INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities

Publication Date

May 31, 2001

This package--distributed at a national conference held at the Loews L'Enfant Plaza Hotel, Washington, D.C. on June 10-12, 2001--was prepared by the Office of Disability, Aging and Long-Term Care Policy (DALTCP) with the U.S. Department of Health and Human Services (HHS) under Contract #HHS-100-97-0008. Additional funds were provided by the Robert Wood Johnson Foundation, HHS Substance Abuse and Mental Health Administration, HHS Administration on Developmental Disabilities, HHS Centers for Medicare and Medicaid Services, HHS Administration on Aging, and the American Association of Retired Persons. For additional information, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.shtml or contact the ASPE Project Officer, Andreas Frank, at HHS/ASPE/DALTCP, Room 424E, H.H Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. His e-mail address is: Andreas.Frank@hhs.gov.

WELCOME

We are glad that you arrived safely in Washington, D.C. for the conference, and look forward to working closely with you over the next few days.

The conference, Independent Choices: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities, is intended to: (1) present research findings and convey the experiences of existing programs and demonstration projects, and (2) identify future directions for policy development and research and demonstration projects which promote effective and responsible consumer-directed service systems for the elderly and people with disabilities.

The conference will be successful if it achieves the following goals:

Educating a large group of representatives from federal, state, and local governments, associations, advocacy groups, funders, research institutions, consumer-directed providers, and self-advocates on available research evidence regarding consumer-directed programs for the elderly and people with disabilities.
Identifying gaps in the knowledge base that need to be filled if consumer-directed programs are to effectively serve people with long-term care disability-related needs, regardless of age or type of condition.
Stimulating new research to support more efficient and effective strategies for the financing, organization, and delivery of consumer-directed services to the elderly and people with disabilities.

This package contains a detailed agenda, the hotel layout, and a list of participants, participant bios, presentations and handouts. Additionally, restaurant and transportation information has been included to assist you in getting around and enjoying the Washington, D.C. area.

Data in this notebook should not be distributed unless the author personally agrees. The materials are compiled merely for purposes of discussion and debate.

Whereas we have tried to make sure that all information is correct at the time of printing, we understand that there may be additional changes that will need to be made. Please forward corrections to us at our fax number 202-401-7733 so that future copies will be correct.

We hope that you enjoy your time in Washington, D.C. If there is anything that we can do to make your stay more comfortable, please ask for Sharon Leeney or Andreas Frank at the conference Registration Desk.

AGENDA

SUNDAY, JUNE 10, 2001

2:00-6:00pm Registration

6:00-7:00pm Reception

7:00-9:00pm Dinner

Video: "Independent Choices: Cash and Counseling", AR

Speaker: The Honorable Mike Huckabee, Governor of AR (Bio)

MONDAY, JUNE 11, 2001

7:30-8:30am Registration/Continental Breakfast

8:30-9:00am Welcoming Remarks

9:00-10:30am Consumer-Direction/Self-Determination

PANEL 1: "Consumer Direction" and "Self-Determination"--What Do These Terms Mean to Advocates of Home and Community-Based Personal Assistance Services

Video: "The Choice is Yours: A New Option for Personal Care", NJ

Facilitator: Larry Polivka--FL Policy Exchange Center on Aging (Bio)

Andrew Batavia--FL International University (Bio) (2000 Report)

Judi Chamberlin--Center for Psychiatric Rehabilitation, MA (Bio)

Jim Firman--National Council on the Aging, DC

Lynn Friss Feinberg--Family Caregiver Alliance, CA (Bio) (2000 Article) (2000 Report)

Jackie Golden--Inclusion Research Institute, MD

Joe Meadours--Team PC/Kennedy Project, IL

PANEL 2: Consumer-Directed Services: Older, More Recent, and Newly Emerging Approaches

Video: "Your CLASS Options", TX

Facilitator: Larry Polivka--FL Policy Exchange Center on Aging (Bio)

Marc Cohen--LifePlans, MA

Lora Connolly--CA Health and Human Services Agency (Bio)

Mary Faherty--LaCrosse County Human Services Department, WI (Bio)

Tommy Ford--TX Department of Human Services (Bio)

Julia Huddleston--OR Department of Human Services (Presentation)

Kevin Mahoney--Boston College Graduate School of Social Work, MA (Bio) (Presentation) (2000 Article) (2000 Article)

Charles Moseley--University of NH (Bio) (1999 Article) (Report)

Marcia Smith--Evercare, MN (Bio)

10:30-10:45am Break

10:45-11:45am Consumer-Direction/Self-Determination

PANEL 3: Medicaid Beneficiary and Their Family Experiences with Self-Determination and Consumer-Direction

Facilitator: Lee Zacharias--ME Consultant

Doris Dennison--NM Consumer

Alan Garry--FL Consumer

Ken Holden--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

Kendra Holden--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

Meg Kane--National Coalition on Self-Determination, OH (Bio)

Lisa Mangieri--NJ Consumer (Bio)

Bobbie Quilleon--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

William Spencer--CDC and Family Care Council, FL

Tammy Svihla--NJ Consumer

Elsa Torres--FL Care Provider

Grace Wall--FL Consumer

11:45am-1:30pm Lunch

Video: "Independent Choices," the News Hour with Jim Lehrer

Speakers:

Bobby Jindal, Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, DC (Bio)

Ed Sontag, Deputy Chief of Staff, U.S. Department of Health and Human Services, DC

1:30-3:00pm Consumer-Direction/Self-Determination

PANEL 4: Evaluation Research Findings

Facilitator: Pam Doty--ASPE/DALTCP, DC (Bio) (2000 Report) (1996 Report)

Ted Benjamin--UCLA Department of Social Welfare, CA (Bio) (2000 Report)

Valerie Bradley--Human Services Research Institute, MA (Presentation) (1999 Report)

Jean Campbell--University of MO (Bio) (Presentation)

Jim Conroy--Center for Outcome Analysis, PA (Bio) (Presentation)

Jennifer Schore--Mathematica Policy Research, NJ (Bio) (Presentation) (2000 Report)

3:00-3:15pm Break

3:15-4:45pm Consumer-Direction/Self-Determination

PANEL 5: State Program Administrator's Experiences

Moderator: Jean Tuller--Centers for Medicare and Medicaid Services, MD (Bio)

Sandra Barrett--AR Division of Aging and Adult Services (Presentation)

William Ditto--NJ Office on Disability Services (Bio) (Presentation)

Beth McArthur--CT Department of Mental Retardation (Bio) (Presentation)

Kerry Schoolfield--Developmental Disabilities Program, FL

Denise Winslow--UT Division of Services for People with Disabilities

TUESDAY, JUNE 12, 2001

7:30-8:30am Continental Breakfast

8:30-10:45am Intensive Workshops on Selected Topics

WORKSHOP I: Quality Assurance in Consumer-Directed Programs

Robert Applebaum--Scripps Gerontology Center, OH

Hilary Brazzell--FL Department of Children and Families

Bill Coffelt--National Coalition on Self-Determination, CA (Bio)

Robert Gettings--National Association of State Directors of Developmental Disabilities Services, VA (Bio)

Beth Jackson--The MEDSTAT Group, MA

Audrey Karibiyak--FL Consumer

Suzanne Kunkel--Scripps Gerontology Center, OH

Charles Moseley--University of NH (Bio) (1999 Article) (Report)

Elsa Torres--FL Care Provider

WORKSHOP II: Consumer-Employed Workers

Maggie Belton--Personal Assistance Service Council, CA (Bio)

Ted Benjamin--UCLA Department of Social Welfare, CA (Bio) (2000 Report)

Alan Garry--FL Consumer

Ken Holden--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

Kendra Holden--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

Bobbie Quilleon--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

Marilyn Saviola--Independence Care System, NY

Cathie Sullivan--Service Employees International Union, DC (Bio)

Jane Tilly--The Urban Institute, DC (Bio) (2000 Article)

Forest Burns Vick, Jr.--CA Caregiver Resource Center System

WORKSHOP III: The Role of Nursing and Social Work Professionals in Supporting Consumer Direction
Part A: How does being a Consultant or Counselor Differ from being a Case Manager or Service Broker

Tanya Dickens--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

Claudia Hoppe--FL Department of Elder Affairs (Bio)

Donna McDowell--WI Bureau on Aging and Long-Term Care Resources

Tom Reimers--FL Department of Elder Affairs (Bio)

Rhonda Sloan--FL Developmental Disabilities Consumer-Directed Care Project (Bio)

Robin Smith--FL Division of Senior Services

Paula Walsh--Heightened Independence and Progress, NJ

Lee Zacharias--ME Consultant

Part B: Nurse Delegation Options

Cindy Hannum--OR Department of Health Services (Bio)

Laura Hershey--CO Consultant

Beverly Lynch--National Coalition on Self-Determination, KY (Bio)

Lisa Mangieri--NJ Consumer (Bio)

Susan Reinhard--Rutgers University, NJ (Bio)

WORKSHOP IV: Consumer-Directed Fiscal and Supportive Intermediary Services

Lynne Camillo--Internal Revenue Service, DC (Bio)

Paul Carlino--Internal Revenue Service, DC (Bio)

Dennis Fitzgibbons--Alpha One, ME (Bio)

Sue Flanagan--EP&P Consulting, DC (Bio) (Presentation) (2000 Article) (1997 Report)

William Fuller--PAAS, VA (Bio)

Patricia Gittens--FL Consumer

Mike Oxford--Topeka Independent Living Resource Center, KS

David Robar--Granite State Independent Living, NH (Bio)

Sharon Theodore--NY Consumer

WORKSHOP V: Consumer Direction and Managed Care

Mary Faherty--LaCrosse County Human Services Department, WI (Bio)

Rick Jelinek--Evercare, MN (Bio)

Portia McCormack--Independence Care System, NY (Bio)

Mark Meiners--University of MD (Bio)

Pam Parker--MN Senior Health Options

WORKSHOP VI: Meeting the Needs of Diverse Constituencies

Doris Dennison--NM Consumer

Lynn Friss Feinberg--Family Caregiver Alliance, CA (Bio) (2000 Article) (2000 Report)

Julia Huddleston--OR Department of Human Services (Presentation)

Mark Sciegaj--Brandeis University, MA (Bio) (Presentation)

Lori Simon-Rusinowitz--University of MD (Bio) (Presentation) (2000 Article) (2000 Article)

William Spencer--CDC and Family Care Council, FL

Tammy Svihla--NJ Consumer

Grace Wall--FL Consumer

10:45-11:15am Break

11:15am-12:00pm Consumer-Directed Care Models in Other Countries

Speaker: John Halloran, European Social Network, UK (Bio)

12:15-1:45pm Lunch

Speaker--Carl Littlefield, Assistant Secretary and DD Coordinator, FL Department of Children and Families

1:45-3:30pm Consumer-Direction/Self-Determination

PANEL 6: Next Steps/Future Directions for Consumer-Directed Services

Facilitator: Judy Miller Jones--George Washington University, DC (Bio)

Suzanne Crisp--AR Division of Aging and Adult Services

Robert Gettings--National Association of State Directors of Developmental Disabilities Services, VA (Bio)

Chris Gianopoulos--ME Department of Human Services (Bio)

Laura Hershey--CO Consultant

Judith Heumann--Heumann and Associates, DC (Bio)

Beverly Lynch--National Coalition on Self-Determination, KY (Bio)

Glenn Stanton--Centers for Medicare and Medicaid Services, MD (Bio)

Nancy Thaler--PA Department of Public Welfare (Bio)

Maggie Tinsman--IA State Senator (Bio)

3:30-3:45pm Break

3:45-5:00pm Consumer-Direction/Self-Determination

PANEL 7: Consumer-Direction and Self-Determination in Broader Perspective

Facilitator: Judy Miller Jones--George Washington University, DC (Bio)

Lee Bezanson--NH Department of Health and Human Resources (Bio)

Bill Coffelt--National Coalition on Self-Determination, CA (Bio)

Lex Frieden--Institute for Rehabilitation and Research, TX

Thomas Hamilton--Centers for Medicare and Medicaid Services, MD

Cindy Hannum--OR Department of Health Services (Bio)

Don Hruby--Division of Mental Health, IA

Judy Riggs--Alzheimer's Association, DC (Bio)

John Rother--American Association of Retired Persons, DC

5:00pm Adjourn

LIST OF PARTICIPANTS

Mary Adams, Associate Director of Health Services, South Plains Community Action Association, Inc., P.O. Box 94692, Lubbock, TX 79493, Tel: 806-797-6393, Fax: 806-797-6397, E-mail: MCZAdams@aol.com

Robert Applebaum, Professor/Associate Director, Miami University, Scripps Gerontology Center, 396 Upham, Oxford, OH 45056, Tel: 513-529-2914, Fax: 513-529-1476, E-mail: applebra@muohio.edu

Jeanne Argoff, Executive Director, Disability Funders Network, 2529 Kirklyn Street, Falls Church, VA 22043, Tel: 703-560-0099, Fax: 703-560-1151, E-mail: njargoff@aol.com (Bio)

Travis Arneson, South Dakota Developmental Disability Council, 3800 E Highway 34, c/o 500 E Capitol, Pierre, SD 57501, Tel: 605-773-5990, Fax: 605-773-5483, E-mail: arlene.poncelet@state.sd.us (Bio)

Benard Arons, MD, Director, Center for Mental Health Services, Department of Health and Human Services/SAMHSA, 5600 Fishers Lane, Room 17-99, Rockville, MD 20857, E-mail: barons@samhsa.gov (Bio)

Dawn Arsenault, Outreach Coordinator, Green Mountain Self-Advocates, 73 Main Street, Suite 401, Montpelier, VT 05602, Tel: 802-229-2600, Fax: 802-223-2132, E-mail: vpsn@sover.net (Bio)

Michael Auberger, National Organizer, ADAPT, 201 South Cherokee, Denver, CO 80223, Tel: 303-733-9324, Fax: 303-733-6211, E-mail: adaptmwa@home.com

Andrew Bader, Principal, Clarion Consulting Group, 108 Thurston Road, Newton, MA 02464, Tel: 617-527-5082, Fax: 800-840-7714, E-mail: andybader@mediaone.net (Bio)

Sandra Barrett, Assistant Director, Arkansas Division of Aging and Adult Services, P.O. Box 1437, Slot 1412, Little Rock, AR 72203-1437, Tel: 510-682-8531, Fax: 501-682-8155, E-mail: sandra.barrett@mail.state.ar.us (Presentation)

Andrew Batavia, JD, MS, Associate Professor, FL International University, 2845 Prairie Avenue, Miami Beach, FL 33140, Tel: 305-672-1128, E-mail: batavia1957@hotmail.com (Bio) (2000 Report)

Margaret (Maggie) Belton, Board Chair, Personal Assistance Service Council, 4730 Woodman, #405, Sherman Oaks, CA 91423, Tel: 818-206-7008, Fax: 818-206-8000, E-mail: lmbelton@mindspring.com (Bio)

A.E. (Ted) Benjamin, Professor, UCLA, Department of Social Welfare, 3250 Public Policy Building, Los Angeles, CA 90095-1656, Tel: 310-206-6044, Fax: 310-206-7446, E-mail: tedbenj@ucla.edu (Bio) (2000 Report)

Kari Benson, Policy Analyst, Administration on Aging, 300 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-205-0624, Fax: 202-260-1019, E-mail: kari.benson@aoa.gov

Lee Bezanson, Medicaid Director, New Hampshire Department of Health and Human Resources, 120 Pleasant Street, Concord, NH 03301, Tel: 603-271-4348, E-mail: lbezanson@dhhs.state.nh.us (Bio)

Crystal Blyler, PhD, Social Science Analyst, Community Support Program Branch, SAMHSA Center for Mental Health Services, 5600 Fishers Lane, Room 11-C-22, Rockville, MD 20857, Tel: 301-443-3653, Fax: 301-443-0541, E-mail: cblyler@samhsa.gov (Bio)

Gloria Bonali, Chair, South Carolina State Legislative Committee, American Association of Retired Persons, 109 Timberline Drive, Conway, SC 29526-8959, Tel: 843-347-2374, Fax: 843-347-2374, E-mail: bonali@sccoast.net

Valerie Bradley, Human Services Research Institute, 2336 Massachusetts Avenue, Cambridge, MA 02140, Tel: 617-876-0426, Fax: 617-492-7401, E-mail: vbradley@hsri.com (Presentation) (1999 Report)

Hilary Brazzell, Office of Developmental Disabilities, Florida Department of Children and Families, 1317 Winewood Boulevard, Building 3, Room 325, Tallahassee, FL 32399-0700, Fax: 859-922-6456

Jon Brock, Member, CMHS National Advisory Council Subcommittee on Consumer/Survivor Issues, 816 Conroy Road, Birmingham, AL 35222, Tel: 205-591-8520, E-mail: jonbrocknc@aol.com (Bio)

Richard Browdie, Secretary, Pennsylvania Department of Aging, Forum Place, 555 Walnut Street, 5th Floor, Harrisburg, PA 17101-1919, Tel: 717-783-1550, Fax: 717-772-3382, E-mail: rbrodie@state.pa.us (Bio)

Joyce Brown-Moore, Administrative Assistant, ASPE/DALTCP, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-690-6443, Fax: 202-401-7733, E-mail: jbrown-m@osaspe.dhhs.gov

Mandee Buckley, Parent/Self Advocate, Project Leadership, 7366 South Redwood Road, #63, West Jordan, UT 84084, Tel: 801-281-4425, E-mail: Mandeegrt@aol.com

Frank Burns, Director of Planning and Evaluation, Administration on Aging, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-260-3931, Fax: 202-619-0850, E-mail: frank.burns@aoa.gov

Cliff Burt, Program Manager, Georgia Division of Aging Services, 2 Peachtree Street, N.W., Suite 36-385, Atlanta, GA 30303, Tel: 404-657-5336, Fax: 404-657-5285, E-mail: gcburt@dhr.state.ga.us (Bio)

Brian Burwell, Vice President, The MEDSTAT Group, 125 Cambridge Park Drive, Cambridge, MA 02140, Tel: 617-492-9302, Fax: 617-492-9365, E-mail: brian.burwell@medstat.com (Bio)

Donna Calame, Executive Director, San Francisco In-Home Support Services Public Authority, 939 Market Street, Suite 550, San Francisco, CA 94103, Tel: 415-243-4477 x303, Fax: 415-243-4407, E-mail: dcalame@sfihsspa.org

Lynne Camillo, JD, Internal Revenue Service, 1111 Constitution Avenue, Room 5329, Washington, DC 20224, Tel: 202-622-6040, Fax: 202-622-4817 (Bio)

Tina Campanella, Executive Director, ProLerna, 100 West Road, Suite 406, Towson, MD 21204, Tel: 410-583-0060, Fax: 410-583-0063, E-mail: tina818@aol.com

Jean Campbell, PhD, Research Assistant Professor, University of Missouri, Institute of Mental Health, 5400 Arsenal Street, St. Louis, MO 63139, Tel: 314-644-7829, Fax: 314-644-7934, E-mail: campbelj@mimh.edu (Bio) (Presentation)

Anthony Caputo, CPA, Concepts of Independence, Inc., 120 Wall Street, Suite 1010, New York, NY 10005, Tel: 212-293-9999, Fax: 212-293-3040, E-mail: conceptscdpa@earthlink.net (Bio)

Sylvia Caras, PhD, Founder, People Who, 146 Chrystal Terrace 5, Santa Cruz, CA 95060, Tel: 831-426-5335, E-mail: sylvia@peoplewho.org (Bio)

Michael Cardella, Self-Advocate, New York State Self Advocacy Association, 102 Windy Hill Road, Greenwich, NY 12834, Tel: 518-695-4568, Fax: 518-695-3062, E-mail: Barb102@earthlink.net (Bio)

Paul Carlino, JD, Internal Revenue Service, 1111 Constitution Avenue, Room 5329, Washington, DC 20224, Tel: 202-622-6040 (Bio)

George Caruso, 11 Coral Drive, Mercerville, NJ 08619, Tel: 609-587-7760, E-mail: gcaruso11@aol.com

Judi Chamberlin, Senior Training Associate, Center for Psychiatric Rehabilitation, 940 Commonwealth Avenue West, Boston, MA 02215, Tel: 781-777-1154, Fax: 781-777-1154, E-mail: MadPride@aol.com or judicham@bu.edu (Bio)

RoAnne Chaney, MPA, Senior Program Officer, Center for Health Care Strategies, 1009 Lenox Drive, Suite 204, Lawrenceville, NJ 08648, E-mail: roanne@sprynet.com (Bio)

Lisa Chevalier, Policy Analyst, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-205-0671, Fax: 202-260-1019, E-mail: lisa.chevalier@aoa.gov

Henry Claypool, Senior Advisor for Disability Policy, Centers for Medicare and Medicaid Services, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-260-2700, Fax: 202-690-6262, E-mail: hclaypool@cms.hhs.gov

Elizabeth Clemmer, Associate Director, Public Policy Institute, American Association of Retired Persons, 601 E Street, N.W., Washington, DC 20049, Tel: 202-434-3911, Fax: 202-434-6402, E-mail: eclemmer@aarp.org

Alette Coble-Temple, Research Associate II, World Institute on Disability, 510 16th Street, Suite 100, Oakland, CA 94612, Tel: 510-251-4337, Fax: 510-763-4109, E-mail: alette@wid.org

Theodore Cochran, Operating Partner, Aspen Management Group, LLC, 8500 West Markham Road, Suite 200, Little Rock, AR 772205, Tel: 501-217-8123, Fax: 501-217-8125 (Bio)

Bill Coffelt, Co-Chair, The National Coalition on Self-Determination, 2925 Viona Road, Pollock Pines, CA 95726, Tel: 530-647-8246, Fax: 530-647-8246, E-mail: wcoffelt@prodigy.net (Bio)

Darlene Coggins, President, People First of Georgia, Athens, GA 30602, Tel: 706-542-6086, Fax: 706-542-4815, E-mail: dcoggins@arches.uga.edu

Elias Cohen, Executive Director, Community Services System, Inc., 136 Farwood Road, Wynnewood, PA 19096, Tel: 610-896-7157, Fax: 610-658-2183, E-mail: elimarco@snip.net (Bio)

Marc Cohen, LifePlans, Inc., 2 University Office Park, 51 Sawyer Road, Waltham, MA 02154, Tel: 617-893-7600 x250

Diane Coleman, JD, MBA, Executive Director, Progress Center for Independent Living, 7521 Madison Street, Forest Park, IL 60130, Tel: 708-209-1500, Fax: 708-209-1735, E-mail: ndycoleman@aol.com (Bio)

Lou Comer, Senior Analyst, Florida Department of Elder Affairs, 4040 Esplanade Way, Room 2351, Tallahassee, FL 32399-7000, Tel: 850-414-2094, Fax: 850-414-2310, E-mail: comerl@elderaffairs.org

Lora Connolly, MS, Assistant Secretary, CA Health and Human Services Agency, 1600 Ninth Street, Room 460, Sacramento, CA 95814, Tel: 916-654-3301, Fax: 916-654-3343 (Bio)

James Conroy, PhD, Center for Outcome Analysis, 201 Sabine Avenue, Narbeth, PA 19072, Tel: 610-668-9001, Fax: 610-668-9002, E-mail: jconroycoa@aol.com (Bio) (Presentation)

Fred Cowell, Staff Director for Health Policy, Paralyzed Veterans of America, 801 18th Street, N.W., Washington, DC 20006, Tel: 202-416-7602, Fax: 202-331-1657, E-mail: fredc@pva.org

Suzanne Crisp, Assistant Director, Arkansas Division of Aging and Adult Services, P.O. Box 437, Slot 1412, Little Rock, AR 72203-1437, Tel: 501-682-2441, Fax: 501-682-8155, E-mail: suzanne.crisp@mail.state.ar.us

M. Doreen Croser, Executive Director, American Association on Mental Retardation, 444 North Capitol Street, N.W., Suite 846, Washington, DC 20001-1512, Tel: 202-387-1968, Fax: 202-387-2193, E-mail: dcroser@aamr.org (Bio)

Andy Curry, Project Coordinator, San Juan Center for Independence, 504 North Main, Aztec, NM 87410, Tel: 505-334-5805, Fax: 505-334-5528, E-mail: andycurry1@aol.com (Bio)

Adelaide Daskim, Field Coordinator, The Self-Advocacy Project, 44 Stelton Road, Suite 110, Piscataway, NJ 08854, Tel: 732-926-8010, Fax: 732-926-8030, E-mail: arcsap@dandy.net

Paolo del Vecchio, Acting Director, Office of External Liaison, Center for Mental Health Services/SAMHSA, 5600 Fishers Lane, Room 15-99, Rockville, MD 20857, Tel: 301-443-2619, Fax: 301-443-5163

Thom DeLilla, Bureau Chief, Bureau of Brain and Spinal Cord Injury Program, Florida Department of Health, 4052 Bald Cypress Way, BIN C#25, Tallahassee, FL 32399-1744, Tel: 850-245-4045, Fax: 850-921-0499, E-mail: thom_delilla@doh.state.fl.us (Bio)

Doris Dennison, P.O. Box 3874, Yahtahey, NM 87375, Fax: 505-334-5528

Roger Deshaies, Consultant, William M. Mercer, Inc., 3131 East Camelback Road, #300, Phoenix, AZ 85016, Tel: 602-522-6549, Fax: 602-957-9573, E-mail: roger.deshaies@us.wmmercer.com (2001 Report)

Tanya Dickens, Consumer, Florida Developmental Disabilities Consumer-Directed Care Project, 503 West Idlewild Avenue, Tampa, FL 33604, Tel: 813-237-3034, Fax: 813-237-8514, E-mail: sloans_2000@yahoo.com (Bio)

William Ditto, Executive Director, New Jersey Office on Disability Services, 222 South Warren Street, P.O. Box 700, Trenton, NJ 08625-0700, Tel: 609-292-7800, Fax: 609-292-1233, E-mail: wditto@dhs.state.nj.us (Bio) (Presentation)

Virginia Dize, Director, Center for the Advancement of State Community Services Programs, National Association of State Units on Aging, 1225 I Street, N.W., Suite 725, Washington, DC 20005, Tel: 202-898-2578, Fax: 202-898-2583, E-mail: vdize@nasua.org (Bio) (2000 Article)

Pamela Doty, PhD, Senior Analyst, ASPE/DALTCP, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-690-6443, Fax: 202-401-7733, E-mail: pdoty@osaspe.dhhs.gov (Bio) (2000 Report) (1996 Report)

Mary Jean Duckett, Director, Division of Benefits, Coverage and Payment, DEHPG/CMSO, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, S2-14-26, Baltimore, MD 21244-1850, Tel: 410-786-3294, Fax: 410-786-3262, E-mail: mduckett@cms.hhs.gov

Brian M. Duke, Director, Geriatric Regional Initiative, Institute on Aging, University of Pennsylvania Health System, 3615 Chestnut Street, Philadelphia, PA 19104, Tel: 215-573-5105, Fax: 215-573-8684, E-mail: brianmd@mail.med.upenn.edu

Gerald Eggert, PhD, Executive Director, Monroe County Long Term Care Program, Inc., 349 West Commercial Street, Suite 2250, East Rochester, NY 14445, Tel: 716-248-8770, Fax: 716-383-1728, E-mail: GMEggert@aol.com (Bio)

Eileen Elias, MEd, Special Expert, SAMHSA/OA/OPPC, Parklawn Building, 12C-15, 5600 Fishers Lane, Rockville, MD 20857, Tel: 301-443-8742, Fax: 301-594-6159, E-mail: eelia@samhsa.gov

Catherine Ellis, National Coalition for Self-Determination, 453 South Orange Grove Boulevard, #5, Pasadena, CA 91105, Tel: 626-792-3605, Fax: 626-792-4727, E-mail: cathellis@aol.com (Bio)

Deborah Ellis, Program Manager, Independent Choices, Arkansas Division of Aging and Adult Services, P.O. Box 1437, Little Rock, AR 72206, Tel: 501-682-8082, Fax: 501-682-8706, E-mail: debby.ellis@medicaid.state.ar.us (Bio)

Pam Erkel, Consumer Support Options Supervisor, Minnesota Department of Human Services, 444 Lafayette Road, St. Paul, MN 55155-3857, Tel: 651-582-1908, Fax: 651-582-1962, E-mail: pam.erkel@state.mn.us

Nancy Eustis, Associate Dean and Professor, Humphrey Institute of Public Affairs, 301 19th Avenue South, #225, Minneapolis, MN 55455, Tel: 612-625-4534, Fax: 612-625-3513, E-mail: neustis@hhh.umn.edu (2000 Article)

Alan Factor, PhD, Research Assistant Professor/Associate Director, Rehabilitation Research and Training Center on Aging with Developmental Disabilities (M/C 626), University of Illinois at Chicago, 1640 West Roosevelt Road, Chicago, IL 60608-6904, Tel: 312-413-1510, Fax: 312-996-6942, E-mail: afactor@uic.edu (Bio)

Mary Faherty, Long Term Support Manager, LaCrosse County Human Services Department, 300 North 4th Street, LaCrosse, WI 54601, Tel: 608-785-6062, Fax: 608-785-6443, E-mail: faherty.mary@co.la-crosse.wi.us (Bio)

Cindy Farson, Director, Central Ohio Area Agency on Aging, 174 East Long Street, Columbus, OH 43215, Tel: 614-645-3879, Fax: 614-645-3884, E-mail: farson@coaaa.org

Lynn Friss Feinberg, MSW, Director of Research and Information Programs, Family Caregiver Alliance, 690 Market Street, Suite 600, San Francisco, CA 94104, Tel: 415-434-3388, Fax: 415-434-3508, E-mail: lfeinberg@caregiver.org (Bio) (2000 Article) (2000 Report)

James Firman, President and CEO, National Council on the Aging, 409 Third Street, S.W., Washington, DC 20024, Tel: 202-479-6601, Fax: 202-479-6602, E-mail: james.firman@ncoa.org

Dennis Fitzgibbons, Director of Operations, Alpha One, 127 Main Street, South Portland, ME 04106, Tel: 207-767-2189, Fax: 207-799-8346, E-mail: dennis_fitzgibbons@alpha-one.org (Bio)

Susan Flanagan, Senior Consultant, EP&P Consulting, Inc., 1201 Pennsylvania Avenue, N.W., Suite 325, Washington, DC 20004, Tel: 202-628-1134, Fax: 202-628-1140, E-mail: sflanagan@eppconsulting.com (Bio) (Presentation) (2000 Article) (1997 Report)

Lynda Flowers, Senior Policy Analyst, National Academy for State Health Policy, 2021 K Street, N.W., Suite 800, Washington, DC 20006, Tel: 202-293-1808, E-mail: lflowers@nashp.org

John Foley, Executive Director, The Arc of New Mexico, 3655 Carlisle N.E., Albuquerque, NM 87110, Tel: 505-883-4630, Fax: 505-883-5564, E-mail: jfoley@arcnm.com (Bio)

Sandra Foote, Director, Health Insurance Reform Project, George Washington University, 2131 K Street, N.W., Suite 500, Washington, DC 20037, Tel: 202-872-4036, Fax: 202-785-4749, E-mail: smfoote@gwu.edu

Marty Ford, Director of Legal Advocacy, The Arc of the United States, 1730 K Street, N.W., Suite 1212, Washington, DC 20006, Tel: 202-785-3388, Fax: 202-467-4179, E-mail: ford@thearc.org

Tommy Ford, CLASS Unit Manager, TX Department of Human Services, P.O. Box 149030, 701 West 51st Street, Austin, TX 78714-9030, Tel: 512-438-3689, Fax: 512-438-5135, E-mail: tommy.ford@dhs.state.tx.us (Bio)

Janice Fortner, 511 J.K. Street, Searcy, AR 72143, Tel: 501-268-7946, Fax: 501-268-9069, E-mail: cfortner@ipa.net

Wendy Fox-Grage, Senior Policy Specialist, National Conference of State Legislatures, 444 North Capitol Street, N.W., Suite 515, Washington, DC 20001, Tel: 202-624-3572, Fax: 202-737-1069, E-mail: wendy.fox-grage@ncsl.org (Bio)

Andreas Frank, Analyst, ASPE/DALTCP, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-690-6443, Fax: 202-401-7733, E-mail: afrank@osaspe.dhhs.gov

Richard L. Fredrickson, Vice President of Special Needs, AMERIGROUP, 399 Thornall Street, 9th Floor, Edison, NJ 08818, Tel: 732-452-6046, Fax: 732-906-2021, E-mail: rfredric@amerigroupcorp.com (Bio)

Lex Frieden, Senior Vice President, Institute for Rehabilitation and Research, 1333 Moursund, Houston, TX 77030, Tel: 713-797-5283, Fax: 713-799-7095, E-mail: lfrieden@bcm.tme.edu

Elizabeth Fuller, Deputy Director, Office of Senior and Long-Term Care Services, South Carolina Department of Health and Human Services, P.O. Box 8206, Columbia, SC 29202-8206, Tel: 803-898-2501, Fax: 803-898-4515, E-mail: fullerb@dhhs.state.sc.us

William Fuller, LSW, MBA, Consultant, PAAS, 156 Cole Lane, Winchester, VA, 22602, Tel: 804-225-3128, E-mail: buffel@wmfuller.com (Bio)

Suellen Galbraith, Director for Public Policy, American Network of Community Options and Resources, 4200 Evergreen Lane, Suite 315, Annandale, VA 22003, Tel: 703-642-6614, Fax: 703-642-0497, E-mail: suellenancor@radix.net

Robert Gallant, Executive Director, Highland Valley Elder Services, 1320 Riverside Drive, Suite B, Northhampton, MA 01062, Tel: 413-586-2000, Fax: 413-584-7076, E-mail: qll@highlandvalley.org (Bio)

Allan Garry, 10432 Dracat Lane, New Port Ritchey, FL 34654, Tel: 727-845-0975, Fax: 727-847-1698

Raymond Gerke, Self Advocate, WRC, 1251 334th Street, Woodward, IA 50276, Tel: 515-438-3139, Fax: 515-438-3122, E-mail: rgerke@dhs.state.ia.us (Bio)

Robert Gettings, Executive Director, National Association of State Directors of Developmental Disabilities Services, 113 Oronoco Street, Alexandria, VA 22314, Tel: 703-683-4202, Fax: 703-684-1395, E-mail: rgettings@nasddds.org (Bio)

Christine Gianopoulos, Director, Bureau of Elder and Adult Services, Maine Department of Human Services, 11 State House Station, 35 Anthony Avenue, Augusta, ME 04333-0011, Tel: 207-624-5335, Fax: 207-624-5361, E-mail: christine.gianopoulos@state.me.us (Bio)

Rosemary Gibson, Senior Program Officer, Robert Wood Johnson Foundation, College Road East/Route 1, Princeton, NJ 08543, Tel: 609-627-5970, Fax: 609-514-5447, E-mail: rgibson@rwjf.org

Patricia Gittens, 7311 South Sherrill Street, Tampa, FL 33616, Tel: 813-831-2584

Jacqueline Golden, Executive Director, Inclusion Research Institute, 1329 West 41st Street, Baltimore, MD 21211, Tel: 410-467-6015, Fax: 410-467-6015, E-mail: jlgolden@bellatlantic.net

Roselle Gonzales, Policy Analyst, National Governor's Association, Center for Best Practices, 444 North Capitol Street, Suite 267, Washington, DC 20081, Tel: 202-624-5486

Gladys Gonzalez-Ramos, PhD, Associate Professor of Social Work, School of Social Work, New York University, One Washington Square North, Room 309, New York, NY 10012, Tel: 212-998-5932, Fax: 212-995-4836, E-mail: gmgl@nyu.edu (Bio)

Donald Grantt, Program Specialist, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-619-2629, Fax: 202-260-1019, E-mail: donald.grantt@aoa.gov

Rick Greene, Policy Analyst, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-205-2814, Fax: 202-260-1012, E-mail: rick.greene@aoa.gov (Bio)

Mary Guy, Health Insurance Specialist, Centers for Medicare and Medicaid Services, CMSO/DEHPG/DASI, 7500 Security Boulevard, Room S2-14-25, Baltimore, MD 21244-1850, Tel: 410-786-2772, Fax: 410-786-9004, E-mail: mguy@cms.hhs.gov

Patti Hackett, MEd, MCHB/HRTW Consultant, Academy for Educational Development, 3151 Northwest 44th Avenue, #143, Ocala, FL 34482, Tel: 352-207-6808, Fax: 202-549-1111, E-mail: pattihackett@yahoo.com

Gayle Hafner, JD, Staff Attorney and Maryland ADAPT Organizer, Maryland Disability Law Center, 1800 North Charles Street, Suite 400, Baltimore, MD 21201, Tel: 410-727-6352, Fax: 410-666-5080, E-mail: marylandadapt@yahoo.com (Bio)

Ruth Hagestuen, National Program Director, National Parkinson Foundation, 4147 Vincent Avenue South, Minneapolis, MN 55410, Tel: 612-915-9126, Fax: 612-920-5276, E-mail: hagestuenr@aol.com (Bio)

John Halloran, Managing Director, European Social Network, 8 Paston Place, Brighton BN2 1HA United Kingdom, Tel: +44 1273 603546, Fax: +44 1273 670487, E-mail: john.halloran@socialeurope.com (Bio)

Judy Halstead, SC and QI Supervisor, Lincoln-Lancaster County Health Department, 3140 N Street, Lincoln, NE 68510, Tel: 402-441-6705, Fax: 402-441-6707, E-mail: jhalstea@ci.lincoln.ne.us

Thomas Hamilton, Director, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Baltimore, MD 21244, Tel: 410-786-9493, Fax: 410-786-9004, E-mail: thamilton@cms.hhs.gov

Cindy Hannum, Assistant Administrator, Senior and Disabled Services Division, Oregon Department of Health Services, 500 Summer Street, N.E., #E13, Salem, OR 97301-1074, Tel: 503-945-5833, Fax: 503-378-8966, E-mail: Cindy.HANNUM@state.or.us (Bio)

Mary Harahan, Consultant, 1927 Beaver Lane, McLean, VA 22102, Tel: 703-532-1955, Fax: 703-536-1706, E-mail: mfharahan1@aol.com

Melissa Harris, Health Insurance Specialist, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244, Tel: 410-786-3397, Fax: 410-786-3262, E-mail: mharris1@cms.hhs.gov (Bio)

James Head, Jr., Senior Vice President, South Carolina Hospital Association, 101 Medical Circle, West Columbia, SC 29171, Tel: 803-796-3080, Fax: 803-796-2938, E-mail: jhead@scha.org (Bio)

Michael Head, Principal, Head and Associates, P.O. Box 11156, Lansing, MI 48901, Tel: 517-202-9896, Fax: 517-371-2323, E-mail: mjhead0530@aol.com

Leslie Hendrickson, PhD, Assistant Commissioner, New Jersey Department of Health and Senior Services, P.O. Box 722, Trenton, NJ 08625-0722, Tel: 609-588-2611, Fax: 609-588-3499, E-mail: lhendrickson@doh.state.nj.us (Bio)

Mary Beth Hennigan, Attendant Care Manager, Abilities In Motion, 416 Lair Avenue, Reading, PA 19601, Tel: 610-376-0030, Fax: 610-376-0035, E-mail: aimcm@netcarrier.com

Betsy McDonel Herr, PhD, Evaluation Specialist, Center for Mental Health Services/SAMHSA, Parklawn Building, Room 11C-22, 5600 Fishers Lane, Rockville, MD 20857, Tel: 301-594-2197, Fax: 301-443-0541, E-mail: bmcdonel@samhsa.gov

Laura Hershey, Consumer/Consultant, 1466 South Lincoln Street, Denver, CO 80210, Tel: 303-733-8717, Fax: 303-733-9191, E-mail: laurahershey@compuserve.com

Chris Hess, Assistant Director, Milwaukee County Department on Aging, 235 West Galena Street, Milwaukee, WI 53212, Tel: 414-289-6104, Fax: 414-289-8590, E-mail: chess@milwaukeecounty.com (Bio)

Judith Heumann, President, Heumann and Associates, 3133 Connecticut Avenue, N.W., #427, Washington, DC 20008, Tel: 202-332-5497, E-mail: judithheumann@aol.com (Bio)

Nicolette (Nikki) Highsmith, MPA, Director of Policy, Center for Health Care Strategies, 1009 Lenox Drive, Suite 204, Lawrenceville, NJ 08648, Tel: 609-895-8101, Fax: 609-895-9648, E-mail: nh@chcs.org (Bio)

Susan Hill, Division Director, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Mailstop S2-14-26, Baltimore, MD 21244, Tel: 410-786-2754, Fax: 410-786-9004, E-mail: shill@cms.hhs.gov

Claude Holcombe, ADAPT of Connecticut, Hartford, CT, Tel: 860-951-4398

Kendra Holden, Participant, Florida Developmental Disabilities Consumer-Directed Care Project, 9437 Rockrose Drive, Tampa, FL 33647-2813, Tel: 813-973-0374, E-mail: kendraholden@aol.com (Bio)

Kenneth Holden, Participant, Florida Developmental Disabilities Consumer-Directed Care Project, 9437 Rockrose Drive, Tampa, FL 33647-2813, Tel: 813-973-0374, E-mail: bigkenholden@aol.com (Bio)

Claudia Hoppe, Consumer Directed Care Outreach Coordinator, Florida Department of Elder Affairs, 4040 Esplanade Way, Tallahassee, FL 34399-7000, Tel: 813-293-1230, Fax: 813-996-5139, E-mail: Cahoppe@earthlink.net (Bio)

Colleen Horton, Texas Center for Disability Studies, University of Texas, Texas Advocates for Supporting Kids with Disabilities, 2425 Trail of Madrones, Austin, TX 78746, Tel: 512-471-7621, Fax: 512-327-5127, E-mail: colleen.horton@mail.utexas.edu

Don Hruby, Director, Consumer Resources and Outreach Program, Division of Mental Health, Des Moines, IA 50319-0114, Tel: 515-281-7274, Fax: 515-281-4597

Mike Huckabee, Governor of Arkansas, State Capitol, Little Rock, AR 72201, Tel: 501-682-2345, Fax: 501-682-3597, E-mail: info@gov.state.ar.us (Bio)

Julia Huddleston, Manager, Rate Setting and Audit Unit, Senior and Disabled Services Division, Oregon Department of Human Services, 500 Summer Street, N.E., #E18, Salem, OR 97301-1074, Tel: 503-945-6392, Fax: 503-947-5044, E-mail: julia.a.huddleston@state.or.us (Presentation)

Gail Gibson Hunt, Executive Director, National Alliance for Caregiving, 4720 Montgomery Lane, Suite 642, Bethesda, MD 20814, Tel: 301-718-8444, Fax: 301-652-7711, E-mail: gailhunt.nac@erols.com (Bio)

Ed Hutton, Technical Director, Centers for Medicare and Medicaid Services/CMSO, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244, Tel: 410-786-6616, Fax: 410-786-3262, E-mail: ehutton@cms.hhs.gov (Bio)

Iris Hyman, Consumer Affairs Specialist, Center for Mental Health Services/SAMHSA, 5600 Fishers Lane, Room 15-99, Rockville, MD 20857, Tel: 301-443-9864, Fax: 301-443-5163, E-mail: ihyman@samhsa.gov

Beth Jackson, Associate Director, The MEDSTAT Group, 125 Cambridge Park Drive, Cambridge, MA 02140, Tel: 617-492-9326, Fax: 617-492-9365, E-mail: beth.jackson@medstat.com

Patricia Janik, Program Specialist, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-619-1352, Fax: 202-260-1012, E-mail: patricia.janik@aoa.gov (Bio)

Rick Jelinek, Executive Vice President, Business Development, Evercare, 9900 Bren Road East, Minnetonka, MN 55343, Tel: 952-936-6847, Fax: 952-936-6902 (Bio)

Bobby Jindal, Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-690-7858, Fax: 202-690-7383 (Bio)

Catriona Johnson, Director of Public Policy Initiatives, Maryland Developmental Disabilities Council, 300 West Lexington Street, Box 10, Baltimore, MD 21201, Tel: 410-333-3688, Fax: 410-333-3686, E-mail: catrionaj@md-council.org (Bio)

J. Rock Johnson, JD, 1342 South 11th Street, Lincoln, NE 68502-1219, Tel: 402-484-0202, E-mail: jrock10@sprynet.com (Bio)

Judith Miller Jones, Director of National Health Policy Forum, Adjunct Professor for Department of Health Care Sciences, George Washington University, 2131 K Street, N.W., Suite 500, Washington, DC 20037, Tel: 202-872-1390, Fax: 202-862-9837, E-mail: jmjones@gwu.edu (Bio)

Meg Kane, Parent/Advocate, 6813 Dearwester Drive, Cincinnati, OH 45236, Tel: 513-984-3359, Fax: 513-984-1660, E-mail: aileen7@aol.com (Bio)

Audrey Karibiyak, 6060 Northwest 104 Lane, Parkland, FL 33076, Tel: 904-225-0066, Fax: 904-225-0066

Joyce Karr, The Self-Advocacy Project, 44 Stelton Road, Suite 110, Piscataway, NJ 08854, Tel: 732-926-8010, Fax: 732-926-8030, E-mail: arcsap@dandy.net

Judith D. Kasper, Professor, Department of Health Policy and Management, Johns Hopkins University, Bloomberg School of Public Health, 624 North Broadway, Baltimore, MD 21205, Tel: 410-614-4016, Fax: 410-955-0470, E-mail: jkasper@jhsph.edu (Bio) (1996 Report)

Ruth Katz, Acting Deputy Assistant Secretary, ASPE/DALTCP, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-690-6443, Fax: 202-401-7733, E-mail: rkatz@osaspe.dhhs.gov

Sharon Keigher, PhD, Professor of Social Work, School of Social Welfare, University of Wisconsin-Milwaukee, 2400 East Hartford, Milwaukee, WI 53201, Tel: 414-229-4414, Fax: 414-229-5311, E-mail: keigher@uwm.edu

Ann Kempski, Associate Director, Department of Public Policy, AFSCME, 1625 L Street, N.W., Washington, DC 20036, Tel: 202-429-1163, Fax: 202-429-1084, E-mail: akempski@afscme.org

Gavin Kennedy, Analyst, ASPE/DALTCP, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-690-6443, Fax: 202-401-7733, E-mail: gkennedy@osaspe.dhhs.gov

Sandy Khoury, Health Insurance Analyst, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244, Tel: 410-786-8066, Fax: 410-786-3262, E-mail: skhoury@cms.hhs.gov

Kellie Kim-Sung, EdD, Policy Research Analyst, Public Policy Institute, American Association of Retired Persons, 601 E Street, N.W., Washington, DC 20049, Tel: 202-434-2225, E-mail: kellie@cox.rr.com (Bio)

James Knickman, PhD, Vice President of Research and Evaluation, Robert Wood Johnson Foundation, P.O. Box 2316, Princeton, NJ 08540, Tel: 609-627-5959, Fax: 609-627-6415, E-mail: jknickman@rwjf.org (Bio)

Dennis L. Kodner, Senior Vice President of Research and Innovation, Executive Director of the Institute for Applied Gerontology, Metropolitan Jewish Health System, 6323 Seventh Avenue, 3rd Floor, Brooklyn, NY 11220-4711, Tel: 718-630-2550, Fax: 718-630-2559, E-mail: dkodner@iag.mjhs.org (Bio)

Jan Kooistra, 1115 Waivers Specialist and Tribal Relations, Health Care Administration, Minnesota Department of Human Services, 444 Lafayette Road North, St. Paul, MN 55155-3852, Tel: 651-296-1090, Fax: 651-215-9453, E-mail: jan.kooistra@state.mn.us (Bio)

Diana Kubovcik, Client Services Director, Central Ohio Area Agency on Aging, 174 East Long Street, Columbus, OH 43215, Tel: 614-645-7286, Fax: 614-645-3884, E-mail: kubvcik@coaaa.org

Suzanne Kunkel, PhD, Associate Director, Miami University, Scripps Gerontology Center, 396 Upham, Oxford, OH 45056, Tel: 513-529-2914, Fax: 513-529-1476, E-mail: kunkels@muohio.edu

Patrick Liedtka, HCBS Waiver Analyst, Centers for Medicare and Medicaid Services Region III, 150 South Independence Mall West, Suite 216, Philadelphia, PA 19106, Tel: 215-861-4186, Fax: 215-861-4280, E-mail: pliedtka@cms.hhs.gov

Gary Lind, Director of Policy and Planning, New York Office of Mental Retardation and Developmental Disability, 44 Holland Avenue, Albany, NY 12229, Tel: 518-473-9697, Fax: 518-473-0054, E-mail: gary.lind@omr.state.ny.us

Carl Littlefield, Assistant Secretary and DD Coordinator, Florida Department of Children and Families, Developmental Services Program, Building 3, Room 325, 1317 Winewood Boulevard, Tallahassee, FL 32399-0700

Danielle Lloyd, Congressional Fellow, Ways and Means Subcommittee on Health, 239 Cannon Building, Washington, DC 20515, Tel: 202-225-5065, Fax: 202-226-3805, E-mail: danielle.lloyd@mail.house.gov

Ken Lovan, Vice President of Development, ResCare, 10140 Linn Station Road, Louisville, KY 40223-3813, Tel: 502-394-2335, Fax: 502-394-2206, E-mail: Klovan@rescare.com (Bio)

Jane Isaacs Lowe, PhD, Senior Program Officer, Robert Wood Johnson Foundation, Route 1 and College Road East, Princeton, NJ 08543, Tel: 609-627-5786, Fax: 609-514-5409, E-mail: jlowe@rwjf.org (Bio)

Cathy Ludlum, Chair, Community Options Task Force/Olmstead, Connecticut Council of Persons with Disabilities, 46 St. James Street, Suite 16, Manchester, CT 06040, Tel: 860-649-7110, E-mail: cludlum@coopinit.org (Bio)

Beverly Lynch, Parent Advocate, National Coalition on Self-Determination, 2045 Steve Drive, Paducah, KY 42003, Tel: 270-575-3060, E-mail: blynch@apex.net (Bio)

Andrew Mack, Health Insurance Specialist, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244, Tel: 410-786-3005, Fax: 410-786-3262, E-mail: amack@cms.hhs.gov

Elizabeth Mack, Health Insurance Specialist, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244, Tel: 410-786-1282, Fax: 410-786-3262, E-mail: emack@cms.hhs.gov

Kevin J. Mahoney, PhD, Associate Professor, National Project Director for Cash and Counseling Demonstration and Evaluation, Boston College Graduate School of Social Work, McGuinn Hall, Room 306, 140 Commonwealth Avenue, Chestnut Hill, MA 02467, Tel: 617-552-4039, Fax: 617-552-1975, E-mail: kevin.mahoney@bc.edu (Bio) (Presentation) (2000 Article) (2000 Article)

Jenny Manders, PhD, Program Development Coordinator, Institute on Human Development and Disability, University of Georgia, 850 College Station Road, Athens, GA 30602-4806, Tel: 706-542-2418, Fax: 706-542-4815, E-mail: jmanders@arches.uga.edu

Lisa Mangieri, 7 Pinho Avenue, Carteret, NJ 07008, Tel: 732-969-0716, E-mail: lisamangieri@compuserve.com (Bio)

Beth McArthur, Director of Planning and Development, Connecticut Department of Mental Retardation, 460 Capital Avenue, Hartford, CT 06106, Tel: 860-418-6132, Fax: 860-418-6003, E-mail: Beth.McArthur@po.state.ct.us (Bio) (Presentation)

Portia McCormack, Director of Membership Outreach, Independence Care System, 257 Park Avenue South, 2nd Floor, New York, NY 10010-7304, Tel: 212-584-2500, Fax: 212-584-2555, E-mail: mccormack@icsny.org (Bio)

Donna McDowell, Director, Wisconsin Bureau on Aging and Long-Term Care Resources, 1 West Wilson Street, Room 540, P.O. Box 7851, Madison, WI 53707, Tel: 608-266-2536, Fax: 608-267-3203, E-mail: mcdowdb@dhfs.state.wi.us

Joe Meadours, Consumer Information and Service Coordinator, Team PC/Kennedy Project, 310 South Peoria, Suite 201, Chicago, IL 60607, Tel: 312-226-5900, Fax: 312-253-7001

Mark R. Meiners, PhD, Associate Professor and Associate Director, University of Maryland Center on Aging, 1240 HHP Building, College Park, MD 20742, Tel: 301-405-2532, Fax: 301-314-2025, E-mail: mm56@umail.umd.edu (Bio)

Paul Mendelsohn, Customer Liaison for Disability Outreach, Center for Beneficiary Services, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Mail Stop S2-23-02, Baltimore, MD 21224-1850, Tel: 410-786-3213, Fax: 410-786-9665, E-mail: pmendelsohn@cms.hhs.gov

Robert Mollica, Deputy Director, National Academy for State Health Policy, 50 Monument Square, S502, Portland, ME 04101, Tel: 207-874-6524, Fax: 207-874-6527, E-mail: rmollica@nashp.org

Anne Montgomery, Government Accounting Office, 441 G Street, N.W., Mail Stop 5A-14, Washington, DC 20548, E-mail: montgomerya@gao.gov

Gretchen Morley, Program Examiner, Office of Management and Budget, 725 17th Street, N.W., Washington, DC 20503, Tel: 202-395-7827, Fax: 202-395-7840, E-mail: gmorley@omb.eop.gov

Michael Morris, Senior Vice President, Community Options, Inc., 1130 17th Street, N.W., Suite 430, Washington, DC 20036-4641, Tel: 202-721-0120, Fax: 202-721-0124, E-mail: michael.morris@comop.org (Bio)

Charles Moseley, EdD, Director, University of New Hampshire, Institute on Disability, National Program Office on Self-Determination, 7 Leavitt Lane, Suite 101, Durham, NH 03824-3522, Tel: 603-862-4810, Fax: 603-862-0615, E-mail: chas.moseley@unh.edu (Bio) (1999 Article) (Report)

Cindy Moseley, Corporate Operations Manager/Senior Financial Supervisor, Aspen Management Group LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205, Tel: 501-217-8123, Fax: 501-217-8125, E-mail: moseleycindy@aol.com (Bio)

David Murday, Assistant Director for Health Policy, Center for Health Services and Policy Research, University of South Carolina School of Public Health, Columbia, SC 28208, Tel: 803-777-0692, Fax: 803-777-8065, E-mail: murday@sc.edu (Bio)

Christopher Murtaugh, Associate Director, Center for Home Care Policy and Research, Visiting Nurse Service of New York, 5 Penn Plaza, 11th Floor, New York, NY, 10001-1810, Tel: 212-290-5997, Fax: 212-290-3756, E-mail: cmurtaug@vnsny.org (Bio)

Bern Myers, JD, Executive Director, Barrier Free Futures, P.O. Box 4495, Santa Fe, NM 87502, Tel: 505-670-1251, Fax: 505-473-5887, E-mail: barrierfree@qwest.net (Bio)

Juliette Myers, ADAPT of Connecticut, Hartford, CT, Tel: 860-951-4398

Margaret Neal, Professor, Institute on Aging, Portland State University, P.O. Box 751, Portland, OR 97207-0751, Tel: 503-725-5145, Fax: 503-725-5100, E-mail: nealm@pdx.edu

Thomas Nerney, Director, Center for Self-Determination, 35425 Michigan Avenue West, Wayne, MN 48184, Tel: 734-722-6262, Fax: 734-467-7639, E-mail: tomnerney@earthlink.net (Bio) (2000 Article)

Liz Norris, Project Coordinator, Center for Health Services and Policy Research, Institute for Public Affairs, University of South Carolina, Columbia, SC 29208, Tel: 803-576-5618, Fax: 803-777-8065, E-mail: lnorris@iopa.sc.edu

Darlene (Dee) O'Connor, PhD, National Project Director, HCBS Resource Network, Boston College Graduate School of Social Work, Room 401, McGuinn Hall, Chestnut Hill, MA 02467, Tel: 508-867-8884, Fax: 508-867-8885, E-mail: darlene.oconnor@bc.edu (Bio)

Liz Obenmayer, Performance Consultant, Council on Quality and Leadership in Support for People with Disabilities, 100 West Road, Suite 406, Towson, MD 21204, Tel: 410-583-0060, Fax: 410-583-0063, E-mail: lizob@aol.com

Erin Ockunzzi, Legislative Assistant, Rep. Michael Bilirakis, Room 2269, Rayburn Building, Washington, DC 20515, Tel: 202-225-5755, Fax: 202-225-4085, E-mail: erin.ockunzzi@mail.house.gov

Nancy Olson, Project Coordinator, Respite Care Association of Wisconsin, 4614 Fuller Street, Schofield, WI 54476, Tel: 715-355-1522, Fax: 715-355-1522, E-mail: nolsonrn@aol.com (Bio)

Ronald L.G. Osterhout, Executive Director, Personal Assistance Service Council, 4730 Woodman, Suite 405, Sherman Oaks, CA 91423, Tel: 818-206-7006, Fax: 818-206-8000, E-mail: rosterhout@pascla.org (Bio)

Mike Oxford, Executive Director, Topeka Independent Living Resource Center, Inc., 501 Southwest Jackson, Topeka, KS 66603, Tel: 785-233-4572, Fax: 785-233-1561, E-mail: tilrcje@tilrc.org

Sheel Pandya, Policy Research Specialist, Public Policy Institute, American Association of Retired Persons, 601 E Street, N.W., Washington, DC 20049, Tel: 202-434-3865, Fax: 202-434-6402, E-mail: spandya@aarp.org

Jim Parker, Advocacy Projects Coordinator, New Mexico Governor's Committee on Concerns of the Handicapped, Room 117, Lamy Building, 491 Old Santa Fe Trail, Santa Fe, NM 87501, Tel: 505-827-6465, Fax: 505-827-6328, E-mail: 103203.400@compuserve.com (Bio)

Pam Parker, Manager, Minnesota Senior Health Options/DHH, 444 Lafayette Road, St. Paul, MN 55155-3852, Tel: 651-296-2140, Fax: 651-297-3230

Trudy Persky, 604 South Washington Square, Apt. #1602, Philadelphia, PA 29106, Tel: 215-592-8281, Fax: 215-592-6408, E-mail: TrudyPers@aol.com (Bio)

Barbara Phillips, Research Scientist, University of California, San Diego, 3350 La Jolla Village Drive, #111N-1, San Diego, CA 92161, Tel: 858-552-4325, Fax: 858-552-4321, E-mail: bphillips@ucsd.edu (Presentation) (2000 Report)

Russell Pierce, Community Liaison, Nebraska Parent Center, 1941 South 42nd Street, Suite 122, Omaha, NE 68105-2942, Tel: 402-346-0525, Fax: 402-346-5253, E-mail: rpierce@neparentcenter.org

Larry Polivka, PhD, Director, Florida Policy Exchange Center on Aging, USF 30437, 4202 East Fowler Avenue, Tampa, FL 33620-3043, Tel: 813-974-3468, Fax: 813-974-5788, E-mail: lpolivka@admin.usf.edu (Bio)

Elizabeth Priaulx, Community Integration Attorney, National Association of Protection and Advocacy Systems, 900 Second Street, N.E., Suite 211, Washington, DC 20002, Tel: 202-408-9514, Fax: 202-408-9520, E-mail: elizabeth@napas.org

Bobbie Quilleon, Florida Developmental Disabilities Consumer-Directed Care Project, 9437 Rockrose Drive, Tampa, FL 33647-2813, Tel: 813-973-0374, E-mail: bobbiequilleon@aol.com (Bio)

Seth Radus, Senior Legislative Assistant, Rep. Karen L. Thurman, Room 201, Cannon Building, Washington, DC 20515, Tel: 202-225-1002, Fax: 202-225-0329, E-mail: seth.radus@mail.house.gov

Heidi Reester, Medical Analyst, Department of Health and Human Services/ASMB, 200 Independence Avenue, S.W., Room 503H, Washington, DC 20201, Tel: 202-690-7196, Fax: 202-690-7867, E-mail: hreester@os.dhhs.gov

Tom Reimers, Project Director, Consumer-Directed Care Project, Florida Department of Elder Affairs, 4040 Esplanade Way, Room 280H, Tallahassee, FL 32399-7000, Tel: 850-414-2115, Fax: 850-414-2008, E-mail: reimerst@elderaffairs.org (Bio)

Susan Reinhard, PhD, Co-Director, Center for State Health Policy, Rutgers University, 317 George Street, Suite 400, New Brunswick, NJ 08901-2008, Tel: 732-932-3105 x230, Fax: 732-932-0069, E-mail: Sreinhard@cshp.rutgers.edu (Bio)

Judith Riggs, Deputy to the Vice President for Policy, Alzheimer's Association, 1319 F Street, N.W., Suite 710, Washington, DC 20004, Tel: 202-393-7737, Fax: 202-393-2109, E-mail: judith.riggs@alz.org (Bio)

Michael Rious, Senior Legislative Assistant, Rep. Albert R. Wynn, Room 434, Cannon Building, Washington, DC 20515, Tel: 202-225-8699, Fax: 202-225-8714, E-mail: mike.rious@mail.house.gov

David Robar, Public Information Coordinator, Granite State Independent Living, 21 Chenell Drive, P.O. Box 7268, Concord, NH 03302-7268, Tel: 603-228-9680, Fax: 603-225-3304, E-mail: david.robar@gsil.org (Bio)

Jim Rosmarin, Human Services Program Administrator, Ohio Department of Aging, 50 West Broad Street, 9th Floor, Columbus, OH 43215, Tel: 614-466-1220, Fax: 614-466-5741

Lisa Rotegard, Supervisor of Community Supports for Seniors, Minnesota Department of Human Services, 444 Lafayette Road, St. Paul, MN 55155-3844, Tel: 651-297-3829, Fax: 651-296-9797, E-mail: lisa.rotegard@state.mn.us (Bio)

Helen Coburn Roth, Executive Director, OPTIONS for Independence, 1095 North Main, Logan, UT 84341, Tel: 435-753-5353, Fax: 435-753-5390, E-mail: hroth@optionsind.org (Bio)

Marcie Roth, Director of Advocacy and Public Policy, National Council on Independent Living, 1916 Wilson Boulevard, Suite 209, Arlington, VA 22201, Tel: 703-525-3406, Fax: 703-525-3409, E-mail: marcie@ncic.org

John Rother, Director of Legislation and Public Policy, American Association of Retired Persons, 601 E Street, S.W., Washington, DC 20049, Tel: 202-434-2277, Fax: 202-434-3714

Charles Sabatino, Assistant Director, ABA Commission on Legal Problems of the Elderly, 740 15th Street, N.W., Washington, DC 20005, Tel: 202-662-8686, Fax: 202-662-8690, E-mail: sabatinoc@staff.abanet.org (1997 Report)

Marian Saulino, Chief Executive Officer, Community Interactions, Inc., 321 Woodland Avenue, Springfield, PA, Tel: 610-328-9008, Fax: 610-328-4597, E-mail: msaulino@ciinc.org

Paul Saulino, Chief Financial Officer, Community Interactions, Inc., 321 Woodland Avenue, Springfield, PA, Tel: 610-328-9008, Fax: 610-328-4597, E-mail: psaulino@ciinc.org

Marilyn Saviola, Director of Advocacy, Independence Care System, 257 Park Avenue South, 2nd Floor, New York, NY 10010, Tel: 212-584-2587, Fax: 212-584-2555, E-mail: saviola@icsny.org

Carole Schauer, Consumers Affairs Specialist, SAMHSA Center for Mental Health Services, 5600 Fishers Lane, Room 15-99, Rockville, MD 20857, Tel: 301-443-8304, Fax: 301-443-5163, E-mail: cschauer@samhsa.gov

Maggie Scheie-Lurie, Consumer Outreach Coordinator, National Alliance for the Mentally Ill, 2107 Wilson Boulevard, Suite 300, Arlington, VA 22201, Tel: 703-516-7990, Fax: 703-524-7600, E-mail: maggie@nami.org (Bio)

Carolyn Schimanski, Executive Director, Parent to Parent of New York State, 500 Balltown Road, Schenectady, NY 12304, Tel: 518-381-4350, Fax: 518-382-1959, E-mail: parent2par@aol.com

Claudia Schlosberg, Senior Civil Rights Analyst, HHS Office of Civil Rights, 200 Independence Avenue, S.W., Room 506F, Washington, DC 20201, Tel: 202-619-1750, Fax: 202-619-3818, E-mail: claudia.schlosberg@hhs.gov (Bio)

Barbara Schneider, Consultant, Independent Consultant, 173 Warwick Road, Elverson, PA 19520, Tel: 610-286-0120, Fax: 610-913-0520, E-mail: barschneider@earthlink.net

Kerry Schoolfield, Bureau Chief, Developmental Disabilities Program, 1317 Winewood, Building 3, Room 325, Tallahassee, FL 32399, Tel: 850-488-4257, Fax: 850-922-6456

Jennifer Schore, Deputy Project Director, Cash and Counseling Evaluation, Mathematica Policy Research, Inc., P.O. Box 2393, Princeton, NJ 08543, Tel: 609-275-2380, Fax: 609-799-0005, E-mail: jschore@mathematica-mpr.com (Bio) (Presentation) (2000 Report)

Karl Schwarzkopf, PhD, Deputy Director for Community Services, Division of Mental Health, Mental Retardation and Substance Abuse, Georgia Department of Human Resources, 2 Peachtree Street, N.W., Suite 22-108, Atlanta, GA 30303-3142, Tel: 404-463-8929, Fax: 404-657-1137, E-mail: khschwarzkopf@dhr.state.ga.us (Bio)

Mark Sciegaj, Assistant Professor, Heller School, Brandeis University, Mail Stop 035, 415 South Street, Waltham, MA 02454-9110, Tel: 781-736-3935, Fax: 781-736-3864, E-mail: sciegaj@brandeis.edu (Bio) (Presentation)

Linda Shandera, Long Term Care Services Coordination Program Manager, Nebraska Health and Human Services System, P.O. Box 95044, Lincoln, NE 68509-5044, Tel: 402-471-9462, Fax: 402-471-6352, E-mail: linda.shandera@hhss.state.ne.us (Bio)

Vicki Shepard, Vice President, Health Care Global Industry Group, EDS, 333 John Carlyle Street, Alexandria, VA 22314, Tel: 703-837-4840, Fax: 703-836-9762, E-mail: vicki.shepard@eds.com (Bio)

Lori Simon-Rusinowitz, MPH, PhD, Deputy Project Director, Cash and Counseling Demonstration and Evaluation, University of Maryland Center on Aging, 2360 HHP Building, College Park, MD 20742, Tel: 301-405-2548, E-mail: ls119@umail.umd.edu (Bio) (Presentation) (2000 Article) (2000 Article)

Joelle Simpson, Center for Health Care Strategies, Inc., 1009 Lenox Drive, Suite 204, Lawrenceville, NJ 08648, Tel: 609-895-8101, Fax: 609-895-9648, E-mail: nh@chcs.org

Rhonda Sloan, Representative, Florida Developmental Disabilities Consumer-Directed Care Project, 503 West Idlewild Avenue, Tampa, FL 33604, Tel: 803-237-3034, Fax: 813-237-8514, E-mail: sloans_2000@yahoo.com (Bio)

Marcia E. Smith, Chief Executive Officer, Evercare, 9900 Bren Road East, Minnetonka, MN 55343, Tel: 952-936-6847, Fax: 952-936-6902, E-mail: marcia_e_smith@uhc.com (Bio)

Robin Smith, Social Worker/Consultant, Division of Senior Services, 2916 State Road 15, Belle Glade, FL 33430, Tel: 561-992-1047, Fax: 561-992-1011, E-mail: RRSmith@co.palm-beach.fl.us

Shearon Smith, Special Assistant to the Director, Tuskegee University National Center for Bioethics, 1209 Chambliss Street, Tuskegee, AL 36088, Tel: 334-724-4561, Fax: 334-727-7221, E-mail: shercsmith@mindspring.com

Robert Sneirson, Systems Advocate, Boston Center for Independent Living, 95 Berkeley Street, Suite 206, Boston, MA 02116-6264, Tel: 617-338-6665, Fax: 617-338-6661, E-mail: RSneirson@aol.com (Bio)

Ed Sontag, Deputy Chief of Staff, U.S. Department of Health and Human Services, 200 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-690-7431

C. Edgar Spencer, MEd, MSW, Director, Division of Developmental Disabilities/Special Populations, South Carolina Department of Mental Health, P.O. Box 485, Columbia, SC 29202, Tel: 803-898-8579, Fax: 803-898-8347, E-mail: ces64@co.dmh.state.sc.us (Bio)

William Spencer, CDC and Family Care Council, 2106 Two Lakes Road T2, Tampa, FL 33604, Tel: 813-915-9575, E-mail: wrsdjs@aol.com

Marie Squillace, PhD, Senior Researcher, National Council on the Aging, Research and Demonstrations Division, 409 Third Street, S.W., Washington, DC 20024, Tel: 202-479-6639, Fax: 202-479-0735, E-mail: marie.squillace@ncoa.org (Bio)

Tina Standing Soldier, P.O. Box 345, Wanblee, SD 57577 (Bio)

Glenn Stanton, Deputy Director, Disabled and Elderly Health Programs Group, CMS Center for Medicaid and State Operations, 7500 Security Boulevard, S2-14-27, Baltimore, MD 21244, Tel: 410-786-6768, Fax: 410-786-9004, E-mail: Gstanton@cms.hhs.gov (Bio)

Nancy Starnes, Associate Advocacy Director, Paralyzed Veterans of America, 801 18th Street, N.W., Washington, DC 20006, Tel: 202-416-7424, Fax: 202-416-7706, E-mail: Nancys@pva.org

Susan Stoddard, PhD, FAICP, President, InfoUse, 2560 Ninth Street, #216, Berkeley, CA 94710, Tel: 510-549-6520, Fax: 510-549-6512, E-mail: sstoddard@infouse.com (Bio)

Robyn Stone, Executive Director, Institute for the Future of Aging Services, 2519 Connecticut Avenue, N.W., Washington, DC 20008, Tel: 202-508-1206, Fax: 202-783-4266, E-mail: rstone@aahsa.org (2000 Article)

Michael K. Stracener, MSW, LCSW, Executive Director for Independent Choices, Aspen Management Group, LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205, Tel: 501-217-8123, Fax: 501-217-8125, E-mail: mikestracener@aol.com (Bio)

Marilyn Straw, President, Voice of the Retarded, 5005 Newport Drive, Suite 108, Rolling Meadows, IL 60008, Tel: 847-253-6020, Fax: 847-253-6054, E-mail: vor@compuserve.com

Michael J. Sturman, Program Director, Concepts of Independence, Inc., 120 Wall Street, Suite 1010, New York, NY 10005, Tel: 212-293-9999, Fax: 212-293-3040, E-mail: conceptscdpa@earthlink.net (Bio)

Cathie Sullivan, Home Care Policy Analyst, Service Employees International Union, 1313 L Street, N.W., Washington, DC 20005, Tel: 202-898-3275, Fax: 202-898-3348, E-mail: sullivac@seiu.org (Bio)

Tammy Svihla, 11 Central Avenue, High Bridge, NJ 08829, Tel: 908-638-5827, E-mail: taminy@worldnet.com

Nancy R. Thaler, Deputy Secretary for Mental Retardation, Pennsylvania Department of Public Welfare, P.O. Box 2675, Harrisburg, PA 17105-2675, Tel: 717-787-3700, Fax: 717-787-6583, E-mail: nthaler@state.pa.us (Bio)

Sharon Lee Theodore, 2309 Route 71, Spring Lake Heights, NY 07762, Tel: 732-974-3110

Neva Thurston, Chair, Missouri Planning Council for Developmental Disabilities, P.O. Box 687, Jefferson City, MO 65102, Tel: 573-751-8611, Fax: 573-526-2755

Jane Tilly, Senior Research Associate, The Urban Institute, 2100 M Street, N.W., Washington, DC 20037, Tel: 202-261-5651, Fax: 202-223-1149, E-mail: jtilly@ui.urban.org (Bio) (2000 Article)

Maggie Tinsman, Iowa State Senator, 3541 East Kimberly Road, Davenport, IA 52807, Tel: 563-359-3624, Fax: 563-359-6671, E-mail: mtinsma@legis.state.ia.us (Bio)

Karen Topper, Advisor, Green Mountain Self-Advocates, 73 Main Street, Suite 401, Montpelier, VT 05602, Tel: 802-229-2600, Fax: 802-223-2132, E-mail: vpsn@sover.net (Bio)

Elsa Torres, 5318 Parker Street, Zephyr Hills, FL 33540, Tel: 813-779-8029

Jean Tuller, Special Programs Director, Disabled and Elderly Health Programs Group, CMS Center for Medicaid and State Operations, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244-1850, Tel: 410-786-6815, Fax: 410-786-9004, E-mail: jtuller@cms.hhs.gov (Bio)

Theresa Turgeon, Director, Office of Geriatric Services, Maine Department of Mental Health, Mental Retardation and Substance Abuse Services, State House, Station #40, Augusta, ME 04333, Tel: 207-287-4245, Fax: 207-287-4268, E-mail: Theresa.Turgeon@state.me.us (Bio)

John J. Tuskan, Jr., RN, MSN, Captain, U.S. Public Health Service, SAMHSA/Center for Mental Health Services, 5600 Fishers Lane, Room 17C-05, Rockville, MD 20857, Tel: 301-443-1761, Fax: 301-433-7912, E-mail: jtuskan@samhsa.gov (Bio)

Todd Tuten, Legislative Assistant, Rep. Michael Bilirakis, Room 2269, Rayburn Building, Washington, DC 20515, Tel: 202-225-5755, Fax: 202-225-4085, E-mail: todd.tuten@mail.house.gov

Sue Vaeth, Senior Care Manager, Maryland Department of Aging, 301 West Preston Street, Room 1007, Baltimore, MD 21201, Tel: 410-767-1108, Fax: 410-333-7943, E-mail: sjv@mail.ooa.state.md.us (Bio)

Laura Van Tosh, Consultant, Van Tosh Consulting, 1533 West Falkland Lane, #336, Silver Spring, MD 20910, Tel: 301-585-9455, Fax: 301-585-9467, E-mail: Lauravt@aol.com (Bio)

Forest Burns Vick, Jr., Public Policy Consultant, California Caregiver Resource Center System, P.O. Box 160695, Sacramento, CA 95816, Tel: 916-442-7239, Fax: 916-442-7305, E-mail: fburnsvick@worldnet.att.net

Thomas Volkert, Director of Mental Health/Aging Advocacy, Mental Health Association of Southeast Pennsylvania, 1211 Chestnut Street, Philadelphia, PA 19017, Tel: 215-751-1800 x266, Fax: 215-636-6312, E-mail: tvolkert@mhasp.org

Ruth Walden, Family Specialist, Children with Special Health Care Needs Program, New York State Department of Health, ESP-Corning Tower, Room 208, Albany, NY 12237-0618, Tel: 518-474-2001, Fax: 518-474-8762, E-mail: rxw03@health.state.ny.us

Grace Wall, 37821 Parke Street, Zephyr Hills, FL 33541, Tel: 813-788-3649

Paula Walsh, Heightened Independence and Progress, 131 Main Street, Suite 120, Hackensack, NJ 07601, Tel: 201-996-9100, Fax: 201-996-9422, E-mail: ber@hipcil.org

Brenda Wamsley, Executive Director, Center for Aging and Healthcare in West Virginia, Inc., 517 Market Street, Dils Center, Parkersburg, WV 26101, Tel: 304-422-2853, Fax: 304-422-2856, E-mail: bwamsley@citynet.net (Bio)

John Watson, Program Analyst, District of Columbia Office of Human Services, 3001 Veazey Terrace, N.W., #633, Washington, DC 20008, Tel: 202-363-8970, Fax: 202-363-0145, E-mail: jwwatson1@earthlink.net

Sherry Watson, Executive Director, San Juan Center for Independence, 504 North Main, Aztec, NM 87410, Tel: 505-334-5805, Fax: 505-334-5528, E-mail: sjci@fisi.net (Bio)

William West, Administrator, Consumer Directed Attendant Support Program, Colorado Department of Health Care Policy and Financing, 1575 Sherman, 5th Floor, Denver, CO 80203, Tel: 303-866-3358, Fax: 303-866-2573, E-mail: william.west@state.co.us (Bio)

Barbara Wheeler, Director of Adult Disability Programs, University of Southern California, UAP, P.O. Box 54700, MS53, Los Angeles, CA 90054-0700, Tel: 323-671-3829, Fax: 323-671-3835, E-mail: bwheeler@chla.usc.edu

Brad Whitney, MD, Division of Senior Health, Spartanburg Regional Healthcare System, 133 North Howard Avenue, Spartanburg, SC 29356, Tel: 864-560-9519, Fax: 864-457-7131, E-mail: rbwsrmc@aol.com

Gene Whitten-Legé, Administrator, In-Home Attendant Services, 1630 Elgin Street, Houston, TX 77004, Tel: 713-528-6499, Fax: 713-523-8592, E-mail: ihas@swbell.net (Bio)

Pat Whitten-Legé, Owner, In-Home Attendant Services, 1630 Elgin Street, Houston, TX 77004, Tel: 713-528-6499, Fax: 713-523-8592, E-mail: patwl@swbell.net (Bio)

Jane Wiley, Advocacy Representative, American Association of Retired Persons, South Carolina State Office, 1201 Main Street, Suite 1980, Columbia, SC 29201, Tel: 803-748-1231, Fax: 803-748-1288, E-mail: jwiley@aarp.org

Betty Williams, P.O. Box 1091, 104 North 19th Street, Richmond, IN 47375, Tel: 765-935-4319, Fax: 765-935-4319

Bob Williams, Policy Advisor, United Cerebral Palsy Associations, 1601 North Springwood Drive, Silver Spring, MD 20910, Tel: 202-973-7113, E-mail: bwilliams@ucp.org (Bio)

Kristen Parker Wills, Research Associate, Scripps Gerontology Center, Miami University, 396 Upham Hall, Oxford, OH 45056-1879, Tel: 513-529-2914, Fax: 513-529-1476, E-mail: parkerkc@muohio.edu (Bio)

Grace Wilson-Laudun, CDPCS Program Director, Access Alaska, Inc., Independent Living Center, 3901 Taft Street, Suites A&B, Anchorage, AK 99517, Tel: 907-248-4777, Fax: 907-248-0639, E-mail: amazing@pobox.alaska.net (Bio)

Denise Winslow, Division of Services for People with Disabilities, 120 North, 200 West, Suite 411, Salt Lake City, UT 84103, Tel: 801-538-4211, Fax: 801-538-4279, E-mail: dwinslow@hs.state.ut.us

Greg Wintle, Project Director, Kansas Division of Health Care Policy, 5th Floor North, Docking Building, 915 S.W. Harrison, Topeka, KS 66612-0557, Tel: 785-296-3561, Fax: 785-296-0557, E-mail: WGW@srskansas.org (Bio)

Buddy Wise, BSN, RN, Program Administrator/Chief Operations Officer, Independent Choices, Aspen Management Group, LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205 (Bio)

John Wren, Director, Office of Program Development, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201, Tel: 202-260-1702, Fax: 202-260-1019, E-mail: john.wren@aoa.gov (Bio)

Barbara York, LPN, Senior Field Counselor, Independent Choices, Aspen Management Group, LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205, Tel: 501-217-8123, Fax: 501-217-8125, E-mail: e-aspenrehab@earthlink.net (Bio)

B. Lee Zacharias, Consultant, 441 North Pownal Road, New Gloucester, ME 04260, Tel: 207-926-5767, Fax: 207-926-5763

Muriel Zgardowski, President, Concepts of Independence, Inc., 120 Wall Street, Suite 1010, New York, NY 10005, Tel: 212-293-9999, Fax: 212-293-3040, E-mail: murielw23@aol.com (Bio)

BIOGRAPHIES

Jeanne Argoff
Executive Director, Disability Funders Network, 2529 Kirklyn Street, Falls Church, VA 22043
Tel: 703-560-0099, Fax: 703-560-1151, E-mail: njargoff@aol.com
Affiliation: Funder
Jeanne Argoff is Executive Director of the Disability Funders Network (DFN), an association of foundations and corporate giving programs. DFN's mission is to facilitate communication and collaboration between the disability community and organized philanthropy to increase grantmaking that will benefit people with disabilities.

Travis Arneson
South Dakota Developmental Disability Council, 3800 E Highway 34, c/o 500 E Capitol, Pierre, SD 57501
Tel: 605-773-5990, Fax: 605-773-5483, E-mail: arlene.poncelet@state.sd.us
Affiliation: Consumer
Travis Arneson is a graduate of Partners in Policymaking and is currently participating in Project Leadership. He was recently elected to the Protection and Advocacy for Developmental Disabilities (PADD) Board. Mr. Arneson has a degree in computer programming and is married, with a young daughter. He owns rental property and is starting a home health care business.

Benard Arons, MD
Director, Center for Mental Health Services, Department of Health and Human Services/SAMHSA, 5600 Fishers Lane, Room 17-99, Rockville, MD 20857
E-mail: barons@samhsa.gov
Dr. Bernard Arons is the Director, Center for Mental Health Services (CMHS) has led a diverse career focused on the improvement of mental health services. In 1993, Dr. Arons was appointed Director of CMHS, Substance Abuse and Mental Health Services Administration. CMHS is charged with providing national leadership in improving mental health services for all Americans. He worked closely with Surgeon General David Satcher to publish the first-ever Surgeon General's Report on Mental Health, which is enhancing national awareness of mental health issues. Additionally, he worked on a National Strategy for Suicide Prevention, to align researchers, providers, advocates and consumers and develop a prevention plan to reduce suicide in the United States. Dr. Arons practices psychiatry at the Center for Mental Health, Inc., a private, nonprofit clinic in the District of Columbia. He is a clinical professor of psychiatry on the faculty of the Georgetown University School of Medicine. He is a graduate of Oberlin College and the Case Western Reserve University School of Medicine. He regularly delivers presentations and publishes articles on serious mental illness and health care reform, and he has received major awards and other recognition for his work.

Dawn Arsenault
Outreach Coordinator, Green Mountain Self-Advocates, 73 Main Street, Suite 401, Montpelier, VT 05602
Tel: 802-229-2600, Fax: 802-223-2132, E-mail: vpsn@sover.net
Affiliation: Consumer Advocate
Dawn Arsenault used Medicaid waiver money to go to college. The college she attended had the Enhance Program that helps people with developmental disabilities to experience what college life is like. But before starting college, Ms. Arsenault had to stay at her position for five years before the agency would allow her to quit supported employment and use her support money to attend college. Ms. Arsenault graduated with her classmates and earned a certificate of completion. She currently works for Green Mountain Self-Advocates and is also a board member of the Developmental Disabilities Council and the University Affiliated Program.

Andrew Bader
Principal, Clarion Consulting Group, 108 Thurston Road, Newton, MA 02464
Tel: 617-527-5082, Fax: 800-840-7714, E-mail: andybader@mediaone.net
Affiliation: Consultant
Andrew Bader is a consultant to the pilot Consumer Direction program that is sponsored by Highland Valley Elder Services, Inc., and funded by the Massachusetts Executive Office of Elder Affairs. He is also helping to prepare a plan to replicate the pilot across the state. In addition, Mr. Bader was a former Assistant Secretary of Elder Affairs.

Andrew Batavia, JD, MS
Associate Professor, Florida International University, 2845 Prairie Avenue, Miami Beach, FL 33140
Tel: 305-672-1128, E-mail: batavia1957@hotmail.com
Affiliation: Researcher (2000 Report)
Professor Andrew Batavia teaches course in health care policy and law. A former White House Fellow with degrees from Harvard Law School and Stanford Medical School, he has served in several key policy positions in the federal government, including as a senior staff member of the White House Domestic Policy Council, Legislative Assistant to a U.S. Senator; Special Assistant to the U.S. Attorney General; and Executive Director of the National Council on Disability. He has published extensively on long-term care under the independent living model, and has most recently been awarded a Mary E. Switzer Distinguished Research Fellowship to write a book on these issues.

Margaret (Maggie) Belton
Board Chair, Personal Assistance Service Council, 4730 Woodman, #405, Sherman Oaks, CA 91423
Tel: 818-206-7008, Fax: 818-206-8000, E-mail: lmbelton@mindspring.com
Affiliation: Public Authority - In Home Supportive Services (IHSS)
Maggie Belton graduated from Howard University in 1954 with a B.A. degree in Political Science/Sociology. She has a Nursing Diploma from St. Joseph's School of Nursing (1965), and a B.S.R.N. and M.H.A. from Indiana University/Purdue University. She is currently Vice President of the Los Angeles County Area Agency on Aging Advisory Council; Vice Chair on the Committee Concerning Elder Abuse, L.A. County A.A.A. Advisory Council; a member of the Human Services Commission in Pasadena, CA; and has served as a member of various committees/commissions associated with seniors/elders and disabled communities.

A.E. (Ted) Benjamin
Professor, UCLA, Department of Social Welfare, 3250 Public Policy Building, Los Angeles, CA 90095-1656
Tel: 310-206-6044, Fax: 310-206-7446, E-mail: tedbenj@ucla.edu (2000 Report)
Ted Benjamin is presently at UCLA, where he is Professor and Chair in the Department of Social Welfare, School of Public Policy and Social Research. His background is political science and social work, and his interests involve long-term services for people with chronic conditions, particularly comparative access and quality issues. He has performed research across various populations with chronic health conditions in order to understand the potential and basis for unifying rather than segmenting policy responses to related service needs and groups. This research has involved the elderly, younger adults with chronic condition, people infected with HIV, and children with special health needs. His most recent research was supported by the U.S. Department of Health and Human Services, the Robert Wood Johnson Foundation, and the State of California. He is co-author (with Bob Newcomer) of an edited volume entitled Indicators of Chronic Health Conditions, published in 1997 by Johns Hopkins University Press.

Lee Bezanson
Medicaid Director, New Hampshire Department of Health and Human Resources, 120 Pleasant Street, Concord, NH 03301
Tel: 603-271-4348, E-mail: lbezanson@dhhs.state.nh.us
Affiliation: State Government
Lee Bezanson is the New Hampshire Medicaid Director. She has a background in psychiatric nursing and federal civil rights litigation. Ms. Bezanson is currently a member of the National Association of State Medicaid Directors (NASMD) Executive Committee and Chair of the NASMD Long-Term Care Technical Advisory Group (TAG). She is also the Co-Chair of the Resource Network.

Crystal Blyler, PhD
Social Science Analyst, Community Support Program Branch, SAMHSA Center for Mental Health Services, 5600 Fishers Lane, Room 11-C-22, Rockville, MD 20857
Tel: 301-443-3653, Fax: 301-443-0541, E-mail: cblyler@samhsa.gov
Affiliation: Federal Employee
Dr. Crystal Blyler is an Evaluation specialist in the Community Support Program Branch of the Division of Knowledge Development and Systems Change, which works to improve access to and quality of public mental health programs in community settings. Dr. Blyler directs two multi-state evaluation programs: a 5-year evaluation of services that helps mental health consumers find and keep jobs, and a 4-year evaluation of consumer-operated services. She is also involved in a 12-site demonstration program, funded by SAMHSA and the Social Security Administration, that is focused on removing disincentives to work for people with disabilities.

Jon Brock
Member, CMHS National Advisory Council Subcommittee on Consumer/Survivor Issues, 816 Conroy Road, Birmingham, AL 35222
Tel: 205-591-8520, E-mail: jonbrocknc@aol.com
Affiliation: Consumer/Survivor Advocate
Jon Brock holds workshops on issues of parents with a psychiatric history. He initiated Volunteer Access, a consumer-run program in which consumer/survivors work as non-profit agency volunteers, as a way to reenter the community. Jon has participated in efforts to accredit and certify consumer/survivor service providers as a mechanism for community-based groups and individuals to access legitimacy and funding. Traditional mental health policy is redistributive policy. Though accreditation and certification, consumer/survivors can both provide and also access developmental policy approaches to common issues.

Richard Browdie
Secretary, Pennsylvania Department of Aging, Forum Place, 555 Walnut Street, 5th Floor, Harrisburg, PA 17101-1919
Tel: 717-783-1550, Fax: 717-772-3382, E-mail: rbrodie@state.pa.us
Richard Browdie has spent more than 30 years in the development and administration of services to older persons and persons with physical and cognitive disabilities in positions at the local, state and national level. Currently he is the Secretary of the Pennsylvania Department of Aging (PDA), which manages a wide range of services to seniors in Pennsylvania. Through the state's 52 Area Agencies on Aging, PDA functions as the single point of entry for assessment, case management and services for older persons funded by the Commonwealth and the Older Americans Act as PDA also determines clinical eligibility for Medicaid funded nursing home care, SSI personal care supplements, and Medicaid-funded waiver services for the elderly. The department's HCBS system has featured a large Family Care Giver Support Program since 1987, which has acted as a model for the new Part-E of the Older Americans Act. In addition, PDA administers the largest state-sponsored pharmacy assistance program for the elderly in the United States. Based on the successful experience with consumer and family control of services and payments in the Family Caregiver Support Program for more than 10 years, and the growing use of similar methods in other state-funded programs, PDA has been advancing the cause of consumer control and flexibility in reimbursement systems for the last six years. It has become a central principle of PDA's systems development efforts.

Cliff Burt
Program Manager, Georgia Division of Aging Services, 2 Peachtree Street, N.W., Suite 36-385, Atlanta, GA 30303
Tel: 404-657-5336, Fax: 404-657-5285, E-mail: gcburt@dhr.state.ga.us
Affiliation: Funder
Cliff Burt is the Alzheimer's Program Director with the Georgia Division of Aging Services. Mr. Burt's experience includes the administration of an Alzheimer Demonstration Grant, funded by the Administration on Aging, which developed an innovative service model called Mobile Day Care. This model has received national exposure as a replicable program, and a self-directed care voucher program, entitled Legacy Express, enabling caregivers of persons with Alzheimer's Disease greater participation in planning and managing the services they need. Mr. Burt has a bachelor's degree in Social Work from Florida State University, and a master's degree in Public Administration and a Certificate in Gerontology from Georgia State University.

Brian Burwell
Vice President, The MEDSTAT Group, 125 Cambridge Park Drive, Cambridge, MA 02140
Tel: 617-492-9302, Fax: 617-492-9365, E-mail: brian.burwell@medstat.com
Brian Burwell is Vice President and Director of Chronic Care and Disability within the Research and Policy Division of the MEDSTAT Group. During his 17-year tenure with the company, Mr. Burwell has directed over 30 studies for federal and state agencies, with a focus on three areas of health policy: (1) Medicaid coverage policy for SSI recipients; (2) the financing and delivery of long-term care services; (3) managed care models for aged and disabled Medicaid beneficiaries. His Medicaid policy research includes evaluations of Medicaid home and community-based waivers; analyses of utilization and expenditure patterns of children with severe disabilities; studies of Medicaid nursing home spend-down; analyses of Medicaid expenditure trends for long-term care services, impacts of managed care on persons with disabilities, evaluations of managed long-term care programs; evaluations of innovative models for supporting persons with development disabilities in the community; impacts of Medicaid estate planning practices on Medicaid eligibility; and the impact of Medicare legislative changes on Medicaid expenditures. Currently he is also currently the Managing Director of the Resource Network for Home and Community-Based Services, a project jointly funded by ASPE and HCFA (now CMS) to provide technical assistance on the development of home and community-based service systems. He is also currently the Project Director of a major HCFA-sponsored project to develop a national Long-Term Care Consumer Awareness Campaign.

Lynne Camillo, JD
Internal Revenue Service, 1111 Constitution Avenue, Room 5329, Washington, DC 20224
Tel: 202-622-6040, Fax: 202-622-4817
Lynne Camillo has a Juris Doctor degree from Syracuse University College of Law and a Master's of Law in Taxation from Georgetown University Law Center. She has 14 years of experience as a government attorney at both the Department of Labor and the Internal Revenue Service. She currently handles employment tax and fringe benefits issues as an Assistant Branch Chief in the Tax-Exempt and Government Entities Division, Employment Tax Branch 2.

Jean Campbell, PhD
Research Assistant Professor, University of Missouri, Institute of Mental Health, 5400 Arsenal Street, St. Louis, MO 63139
Tel: 314-644-7829, Fax: 314-644-7934, E-mail: campbelj@mimh.edu (Presentation)
Affiliation: Consumer Research
Dr. Jean Campbell is a Research Assistant Professor in Psychiatry at the Missouri Institute of Mental Health in St. Louis, and Director of the Program in Consumer Studies and Training. Dr. Campbell is an internationally known mental health consumer researcher, speaker, and consultant. She leads the effort to define valued outcome domains for service recipients in research and evaluation, and to promote multi-stakeholder approaches. She is presently the Principal Investigator of a coordinating center for a large, multi-site federal research initiative to study the cost-effectiveness of consumer-operated service programs as an adjunct to traditional mental health services.

Anthony Caputo, CPA
Concepts of Independence, Inc., 120 Wall Street, Suite 1010, New York, NY 10005
Tel: 212-293-9999, Fax: 212-293-3040, E-mail: conceptscdpa@earthlink.net
Anthony Caputo is a graduate of Rutgers University with over 20 years of experience in providing auditing and management advisory services to not-for-profit and government entities. He was the engagement partner for hundreds of federal, state and local government audit assignments. Currently, his expertise is working with Medicaid funded home care programs in the City of New York.

Sylvia Caras, PhD
Founder, People Who, 146 Chrystal Terrace 5, Santa Cruz, CA 95060
Tel: 831-426-5335, E-mail: sylvia@peoplewho.org, Web site: http://www.peoplewho.org
Affiliation: Senior with a Disability
Sylvia Caras has been active in electronic support and advocacy since 1993. She is a mental health consumer consultant, especially interested in widely distributing health and rights information, and in developing a networked community of people who experience mood swings, fear, voices and visions.

Michael Cardella
Self-Advocate, New York State Self Advocacy Association, 102 Windy Hill Road, Greenwich, NY 12834
Tel: 518-695-4568, Fax: 518-695-3062, E-mail: Barb102@earthlink.net
Michael Cardella gives presentations on disability awareness and the outcomes of inclusion for the New York State Self Advocacy Association. He is a member of AmeriCorps*VISTA and a 1998 graduate of Schuylerville High School receiving an IEP diploma. Michael is a provocative speaker, doing keynote presentations and workshops to national and local audiences. He is helping to change public misconceptions about people with disabilities. Michael is a participant in Project Leadership, a national training program that brings key self-advocates and parent/family leaders to Washington, DC, as well as New York State Partners in PolicyMaking. He is employed by Home Depot.

Paul Carlino, JD
Internal Revenue Service, 1111 Constitution Avenue, Room 5329, Washington, DC 20224
Tel: 202-622-6040
Paul Carlino has been involved with choreworker issues on behalf of the Internal Revenue Service Office of Chief Counsel since July 2000. Prior to this he served as Attorney-Advisor to Judge Maurice Foley of the United States Tax Court. Mr. Carlino also served as Law Clerk to Judge Peter D. Pizzuto of the New Jersey Tax Court for the 1998-99 term. He attended the William and Mary School of Law in Williamsburg, graduating with a Juris Doctor degree in May 1998.

Judi Chamberlin
Senior Training Associate, Center for Psychiatric Rehabilitation, 940 Commonwealth Avenue West, Boston, MA 02215
Tel: 781-777-1154, Fax: 781-777-1154, E-mail: MadPride@aol.com or judicham@bu.edu
Judi Chamberlin is a psychiatric survivor and an activist since 1971 in the survivor/consumer/ex-patient movement. Ms. Chamberlin is the author of On Our Own: Patient-Controlled Alternatives to the Mental Health System, originally published in 1978, and later republished in Britain, Italy, and Japan. She has also written numerous articles about the movement, self-help, and patients' rights. She is a co-founder of the Ruby Rogers Advocacy and Drop-In Center in Somerville, Massachusetts, one of the earliest member-run self-help centers, which has been operating since 1985. Ms. Chamberlin is affiliated with the Center for Psychiatric Rehabilitation at Boston University, where she has worked on numerous projects concerning self-help and empowerment. She is a co-founder and associate at the National Empowerment Center in Lawrence, Massachusetts, a federally funded technical assistance center that has developed materials on self-help and recovery models. She is a board member of the National Association for Rights Protection and Advocacy (NARPA), the American Association of People with Disabilities (AAPD), Mental Disabilities Rights International (MDRI), and the Center for Public Representation. She also serves on the Massachusetts Mental Health State Planning Council (co-chair), the Statewide Independent Living Council, and the Governor's Special Advisory Commission on Disability Policy, among many other boards and committees. Ms. Chamberlin recently stepped down as the Chair of the Massachusetts Mental Health Protection and Advocacy Advisory Board, on which she continues to serve ex-officio. She is a member of the editorial board of Psychiatric Rehabilitation Journal. She is listed in Who's Who in America, and is profiled in Extraordinary People with Disabilities, a book for young people. She had spoken at conferences and meetings around the world, with appearances in Canada, England, Scotland, Ireland, Iceland, Sweden, Denmark, Norway, Finland, Holland, Portugal, Italy, Austria, Germany, Slovenia, Hungary, Poland, Australia, New Zealand, Japan and Hong Kong. In 1992, Ms. Chamberlin received the Distinguished Service Award of the President of the United States from the President's Committee on Employment of People with Disabilities, and the David J. Vail National Advocacy Award from the Mental Health Association of Minnesota. In 1995, she was the recipient of the N. Neal Pike Prize for Services to People with Disabilities from the Boston University School of Law. In 2000, she was named one of 20 outstanding disability leaders by Access Living, Chicago, and received a Lifetime Achievement Award from the New York Association for Psychosocial Rehabilitation.

RoAnne Chaney, MPA
Senior Program Officer, Center for Health Care Strategies, 1009 Lenox Drive, Suite 204, Lawrenceville, NJ 08648
E-mail: roanne@sprynet.com
RoAnne Chaney was recently hired at the Center for Health Care Strategies as a Senior Program Officer. Her responsibilities are in the areas of Medicaid long-term care, home and community-based services, and consumer involvement. Ms. Chaney has experience in disability and managed care issues in Michigan. Previously, she was the Operations Director for the Michigan Disability Rights Coalition and coordinated Michigan's Assistive Technology systems change project. RoAnne was also the Associate Director of the Ann Arbor Center for Independent Living for 10 years where she and a team developed a collaborative interagency process to assist individuals with a variety of significant disabilities leave nursing home settings to live in the community. She has a B.A. in Social Work and a Master's in Public Administration from Eastern Michigan University.

Theodore (Tod) Cochran
Operating Partner, Aspen Management Group, LLC, 8500 West Markham Road, Suite 200, Little Rock, AR 772205
Tel: 501-217-8123, Fax: 501-217-8125
Affiliation: Counseling and Fiscal Agency
Tod Cochran has a B.A. from Connecticut College and a M.S. in Physical Therapy from Columbia University. He worked from several years at Georgetown University Hospital both in acute care and sports medicine. Mr. Cochran has direct patient care experience in rehabilitation hospitals, nursing homes, and home care. Mr. Cochran served as Clinical Coordinator for a multi-state rehabilitation company before helping to start Aspen Rehab Group LLC in 1997. In 1998, Aspen Rehab Group was awarded IndependentChoices contracts as CFA for 50 of 75 counties in Arkansas. Mr. Cochran set up internal computerized systems for data tracking and management assisted with tax matters for IndependentChoices participants. In 2000, Aspen Rehab Group changed its name to Aspen Management Group, LLC.

Bill Coffelt
Co-Chair (Parent), The National Coalition on Self-Determination, 2925 Viona Road, Pollock Pines, CA 95726
Tel: 530-647-8246, Fax: 530-647-8246, E-mail: wcoffelt@prodigy.net, Web site: http://www.oaksgroup.org
Affiliation: Parent Advocate
Bill Coffelt is a retired widower and father of Bill Jr., a 23-year old man with significant developmental disabilities who has lived in a state institution and currently his own home with 24-hour support. He is co-founder of the Oaks Group, an organization advocating for community options and lead plaintiff in the largest deinstitutionalization lawsuit of its kind, resulting in the reduction of the population of California's state institutions by over 2,000 individuals. Mr. Coffelt's recent activities include promoting self-determination at the federal level, and promotion of the Community Imperative, a declaration asserting the rights of all individuals to community living.

Elias Cohen
Executive Director, Community Services System, Inc., 136 Farwood Road, Wynnewood, PA 19096
Tel: 610-896-7157, Fax: 610-658-2183, E-mail: elimarco@snip.net
Affiliation: Policy Consultant and Attorney-Advocate
Elias Cohen is currently Executive Director of Community Services Systems, Inc., a non-profit agency engaged in the development and production of educational materials and events in human services. He served as Pennsylvania's first Commissioner of Aging for 12 years during which time he was responsible for licensing long-term care facilities and community-based services for the elderly. Prior to coming to Pennsylvania he served as Assistant Commissioner of Mental Health in Indiana. He was the first President and subsequently was a board member of the National Senior Citizens Law Center, and Director of the Project on Law and Aging for the Public Interest Law Center of Philadelphia (PILCOP). As a practicing attorney he has been active in vindicating the rights of developmentally disabled persons to live in community settings. He is the author of over 85 publications, including articles on autonomy and ethics, in journals of law, gerontology, health, social work, long-term care, and public administration. From 1976 to 1981, he served as Editor-in-Chief of The Gerontologist. He has been honored by the State of Pennsylvania and national organizations for his work in aging. In 1984, he was the 20th Anniversary Awardee of the National Association of State Units on Aging, and in 1985 was given the Retirement Research Foundation First Place Media Prize and an American Film Festival Red Ribbon for his video documentary, Alzheimer's Disease: You Are Not Alone. In 1991, he received the Arthur S. Flemming Award for Outstanding National Contributions in Law, Aging and Social Policy from the Joint Conference of the American Bar Association, AARP, the National Senior Citizens Law Center, and the University of Michigan Center for Social Gerontology. His involvement in Self-Determination occurs on two fronts: in developmental disability, he continues to represent both providers of community services and residents in zoning and related cases affecting the right to small community living arrangements in residential areas; in aging, he has been pursuing the paradox of the overwhelming public policy and actual effective choice by the elderly to either elect or consent to nursing home care despite the presence of community-based alternatives, all the while articulating an abhorrence of the nursing home option.

Diane Coleman, JD, MBA
Executive Director, Progress Center for Independent Living, 7521 Madison Street, Forest Park, IL 60130
Tel: 708-209-1500, Fax: 708-209-1735, E-mail: ndycoleman@aol.com
Affiliation: Consumer, Advocate and Provider
Diane Coleman was Co-Director of the Technology Access Center of Middle Tennessee, and served as Policy Analyst for the Tennessee Technology Access Project, funded through the National Institute of Disability and Rehabilitation Research from 1991 through 1995. Since 1996, Ms. Coleman has been the Executive Director of Progress Center, a non-profit non-residential consumer-directed center advocating on behalf of people with disabilities. Since 1997, she has been the director of a Robert Wood Johnson Foundation funded IndependentChoices demonstration project. The project is developing a manual and video to help consumer-directed centers for independent living provide training to home service agencies on consumer direction and assistive technology.

Lora Connolly, MS
Assistant Secretary, California Health and Human Services Agency, 1600 Ninth Street, Room 460, Sacramento, CA 95814
Tel: 916-654-3301, Fax: 916-654-3343, Web site: http://www.chhs.ca.gov
Lora Connolly is an Assistant Secretary at the California Health and Human Services Agency. In this capacity, she serves as advisor to the Secretary and the Governor on aging and long-term care issues. She chairs the Executive Subcommittee of Agency's HHSA Long-Term Care Council, providing leadership in the state's efforts to develop a coordinated, statewide long-term care system. Lora previously served as the Chief of the Office of Long Term Care in the Department of Health Services. Prior to coming to the Department of Health Services, Lora served as a consultant at the Assembly Office of Research for four years. While there, she worked on the development of the California Partnership for Long-Term Care, legislation authorizing the Public Employees Retirement System (PERS) long-term care insurance offering, and other aging and long-term care research issues. Lora holds a Masters of Science in Gerontology with an emphasis in public policy and administration from the University of Southern California. She is a fellow in the University of Minnesota's "Balancing Long Term Care Systems" program and serves on the National Advisory Committee to the Robert Wood Johnson Foundation's "Coming Home" program, which provides state grants to develop affordable, rural assisted living. She has also written numerous articles on long-term care delivery and financing issues.

James Conroy, PhD
Center for Outcome Analysis, 201 Sabine Avenue, Narbeth, PA 19072
Tel: 610-668-9001, Fax: 610-668-9002, E-mail: jconroycoa@aol.com (Presentation)
Dr. James Conroy has been a consultant to 18 federal agencies, and to more than 100 state and local agencies since 1970, and has been Principal Investigator for more than 100 funded grants and contracts. He is the author of more than 250 formal reports in the fields of disabilities, aging, child welfare and other human service fields, including 25 articles in professional journals, 7 book chapters and over 240 formal deliverable research reports to government agencies. Dr. Conroy's work has been publicized on 60 Minutes; the Peter Jennings ABC Evening News; NightLine; Public Television; the Philadelphia Inquirer; the New York Times; the Chicago Tribune; multiple radio interviews; and other media. He considers his work on the outcomes of deinstitutionalization in America to be his definitive contribution toward better lives for people with disabilities. Dr. Conroy has a B.A. from Yale University in Physiological Psychology, and a M.A. in Sociology/Program Evaluation and a Ph.D. in Medical Sociology from Temple University.

M. Doreen Croser
Executive Director, American Association on Mental Retardation, 444 North Capitol Street, N.W., Suite 846, Washington, DC 20001-1512
Tel: 202-387-1968, Fax: 202-387-2193, E-mail: dcroser@aamr.org, Web site: http://www.aamr.org
Affiliation: Association Executive
Doreen Croser has been serving as the first woman Executive Director of AAMR for the last 13 years. Established in 1876, AAMR is a professional organization concerned about improving the quality of life for individuals with disabilities and their families through research, education, training, and public policy initiatives. The Association publishes books, journals and monographs. On the personal level, Ms. Croser became involved in disabilities many years ago when her younger brother John was diagnosed with multiple disabilities including mental retardation. Since that time, she has served in many professional and volunteer capacities, including the Governor's Developmental Disabilities Council in Maryland.

Andy Curry
Project Coordinator, San Juan Center for Independence, 504 North Main, Aztec, NM 87410
Tel: 505-334-5805, Fax: 505-334-5528, E-mail: andycurry1@aol.com
Affiliation: Consumer Advocate/Consumer Directed Personal Care Option Provider
Andy Curry is a native of New Mexico. He is Project Coordinator for the consumer directed personal care option, and an Independent Living Specialist (ILS) for people with disabilities. His duties encompass such activities as: outreach, resource development, information and referral, consumer and attendant training, independent living skills training, consumer and systems advocacy, peer support, intake and assessments. He is President of the Excel Case Management Board of Directors, Vice President of San Juan Partnership Board of Directors, Vice President of The Arc Thriftown Board of Directors, and a Board of Directors member for Navajo United Methodist Center. San Juan Center for Independence is the fiscal intermediary for the Medicaid Consumer-Directed Personal Care Option. Mr. Curry suffered a spinal cord injury 10 years ago, and has been living independently for the last 8 years as a quadriplegic.

Thom DeLilla
Bureau Chief, Bureau of Brain and Spinal Cord Injury Program, Florida Department of Health, 4052 Bald Cypress Way, BIN C#25, Tallahassee, FL 32399-1744
Tel: 850-245-4045, Fax: 850-921-0499, E-mail: thom_delilla@doh.state.fl.us
Affiliation: Direct Care Provider and Consumer Advocate
Thom DeLilla has been actively involved in the disability movement for the past 30 years in various professional capacities. He is currently employed as the Bureau Chief for the Florida Department of Health, Brain and Spinal Cord Injury Program. This is a statewide-coordinated program for individuals who have sustained traumatic brain and/or spinal cord injuries. The goal of the program is to integrate individuals back into the community utilizing all available federal, state, and community resources. The Brain and Spinal Cord Injury Program is also responsible for the administration of a statewide medical/home and community-based waiver for the provision of long-term community-based supports. Mr. DeLilla has been activity involved in the development and implementation of several statewide initiatives to further enhance the provision of community-based services and supports including the Consumer Directed Care Project, the Nursing Home Transition Project and the Personal Care Attendant Pilot Project. Mr. DeLilla obtained his B.S. degree from the University of South Florida, completed extensive postgraduate studies in rehabilitation counseling and public management at Florida State University, and is a Certified Insurance Rehabilitation Specialist and Disability Management Specialist. He has served on numerous boards and committees, and was a former president of the Board of the National Spinal Cord Injury Association and the state representative for the National Organization on Disability. He is a 29-year survivor of a traumatic spinal cord injury and clearly recognizes the obstacles of preventing individuals with disabilities from becoming fully integrated into the mainstream of our society.

Tanya Dickens
Consumer, Florida Developmental Disabilities Consumer-Directed Care Project, 503 West Idlewild Avenue, Tampa, FL 33604
Tel: 813-237-3034, Fax: 813-237-8514, E-mail: sloans_2000@yahoo.com
Affiliation: Consumer
Tanya Dickens is a young woman with a developmental disability. Ms. Dickens attends an adult day program where she does contract work. When not working, she is learning how to use a computer. Above all else, Ms. Dickens's biggest dream is to learn how to read. The Consumer Directed Care Project allows her to choose service providers without restrictions. Ms. Dickens chose her sister who resides in a nearby town to provide respite care for her as needed.

William Ditto
Executive Director, New Jersey Office on Disability Services, 222 South Warren Street, P.O. Box 700, Trenton, NJ 08625-0700
Tel: 609-292-7800, Fax: 609-292-1233, E-mail: wditto@dhs.state.nj.us
Affiliation: State Government Official (Presentation)
William Ditto is the Executive Director of the New Jersey Office on Disability Services. Mr. Ditto has over 20 years of experience in program development and social service administration. He was recruited by the New Jersey Department of Human Services in 1985 to design and implement the Personal Attendant Demonstration Program, a statewide program offering consumer-directed home care services to adults with disabilities. He is the project director for the New Jersey Cash and Counseling Demonstration. Mr. Ditto has an A.A. and B.A. degree from Monmouth College, New Jersey, and a M.S.W. from Rutgers University, where he is currently an adjunct faculty member. Prior to his employment with the state government, Mr. Ditto was supervisor of handicapped services for the Monmouth County (NJ) Board of Social Services, where he began his professional career in 1971. He helped to found the Monmouth County Office for the Disabled. Mr. Ditto's primary professional areas of interest and experience are disability and aging issues, personal care services, consumer-directed services, long-term care services, health care policy and financing, and family support.

Virginia Dize
Director, Center for the Advancement of State Community Services Programs, National Association of State Units on Aging, 1225 I Street, N.W., Suite 725, Washington, DC 20005
Tel: 202-898-2578, Fax: 202-898-2583, E-mail: vdize@nasua.org (2000 Article)
Virginia Dize has more than 20 years experience in long-term care policy development, advocacy, and program management. She is Director of the Center for the Advancement of State Community Service Programs at the National Association of State Units on Aging, providing leadership on long-term care issues to enhance states' capacity to develop comprehensive, integrated service systems responsive to older persons. She directed a Robert Wood Johnson Foundation "IndependentChoices" project under which a consumer direction assessment tool was developed. Eight states successfully used the assessment process as a springboard for developing state-specific consumer direction reforms.

Pamela Doty, PhD
Senior Analyst, ASPE/DALTCP, 200 Independence Avenue, S.W., Washington, DC 20201
Tel: 202-690-6443, Fax: 202-401-7733, E-mail: pdoty@osaspe.dhhs.gov (2000 Report) (1996 Report)
Pamela Doty is a Senior Policy Analyst in the Office of Disability, Aging and Long-Term Care Policy in the Office of the Assistant Secretary for Planning and Evaluation (ASPE), U.S. Department of Health and Human Services. Prior to joining this office in 1987, she was a senior analyst in the Office of Legislation and Policy in the Health Care Financing Administration, a Congressional Fellow at the Office of Technology Assessment, and a Research Associate at the Center for Policy Research in New York City. She received her Ph.D. in Sociology from Columbia University. She is the author of a book and numerous other publications on health and long-term care issues. In recent years, her research has focused primarily on family caregiving, assisted living facilities, Medicaid spend-down in nursing homes, variations in state approaches to home and community-based long-term care services, consumer-directed personal assistance services, private long-term care insurance, and cross-national comparisons of long-term care financing and organization. She is currently the ASPE project officer for the Cash and Counseling Demonstration and Evaluation, which is being co-sponsored by the Robert Wood Johnson Foundation. She is also the ASPE project officer for the Home and Community-Based Resource Network, which is being co-sponsored by the Centers for Medicare and Medicaid Services.

Gerald Eggert, PhD
Executive Director, Monroe County Long Term Care Program, Inc., 349 West Commercial Street, Suite 2250, East Rochester, NY 14445
Tel: 716-248-8770, Fax: 716-383-1728, E-mail: GMEggert@aol.com
Affiliation: Researcher
Gerald Eggert has been conducting HCFA (now CMS) demonstrations with Medicare waivers since 1985. He is the Principal Investigator for A Randomized Trial of Primary and Consumer-Directed Care for People with Chronic Illness (HCFA No.95-C-90467/2-01), which examines the use of a consumer-directed monthly voucher to purchase in-home services for an impaired Medicare population. He is also Principal Investigator for a companion study from the Office of Rural Health Policy, whose objective is to tailor the voucher intervention to a rural environment.

Catherine M. Ellis
National Coalition for Self-Determination, 453 South Orange Grove Boulevard, #5, Pasadena, CA, 91105
Tel: 626-792-3605, Fax: 626-792-4727, E-mail: cathellis@aol.com
Affiliation: Advocate and Trainer
Catherine Ellis is the parent of a developmentally disabled young woman. She has been an advocate and trainer of parents and professionals on the local, state and national levels for 18 years. She is immediate past Chair of the California Developmental Disabilities Area Board 10, and immediate past Vice Chair of the California State Organization of Area Boards. She was a member of the first Project Leadership Class in Washington, DC in 2000, and is a founding member of the National Coalition on Self-Determination.

Deborah K. Ellis
Program Manager, Independent Choices, Arkansas Division of Aging and Adult Services, P.O. Box 1437, Little Rock, AR 72206
Tel: 501-682-8082, Fax: 501-682-8706, E-mail: debby.ellis@medicaid.state.ar.us, Web site: http://www.independentchoices.com
Deborah Ellis began working with the Arkansas Department of Human Services in 1989. For eight years she worked with Medicaid Management Information Systems and then writing Medicaid policy. During this time she helped to design system changes for Arkansas' Family Planning Waiver; created Edit, Audit and Procedure Code Reports for entire Medicaid system. While working with Medicaid she initiated the first Arkansas work groups to submit application for the Robert Wood Johnson Foundation Cash and Counseling Grant. In 1997, she began working with the IndependentChoices Program and does system design, implementation, monitoring, and works with participants and Counseling Fiscal Agent contractors.

Alan Factor, PhD
Research Assistant Professor/Associate Director, Rehabilitation Research and Training Center on Aging with Developmental Disabilities (M/C 626), University of Illinois at Chicago, 1640 West Roosevelt Road, Chicago, IL 60608-6904
Tel: 312-413-1510, Fax: 312-996-6942, E-mail: afactor@uic.edu
Affiliation: Researcher
Alan Factor has conducted national studies of person-centered supports for older adults with developmental disabilities. He collaborated in developing and evaluating Person-Centered Planning for Later Life, which enables adults to actively plan for their later years by teaching aging concepts and choice-making skills and co-authored Guidelines for Promoting Choices and Options in the Community for Older Adults with Developmental Disabilities. Dr. Factor is currently evaluating the Robert Wood Johnson Foundation Independent Choices project to expand consumer-direction in the delivery of agency-based home care services by training older consumers with late-life onset disabilities and home care workers in the independent living philosophy, consumer-direction, and assistive technology.

Mary Faherty
Long Term Support Manager, LaCrosse County Human Services Department, 300 North 4th Street, LaCrosse, WI 54601
Tel: 608-785-6062, Fax: 608-785-6443, E-mail: faherty.mary@co.la-crosse.wi.us
Mary Faherty has worked for the past 25 years in county government within social service departments in Wisconsin. For the last eight years, she has worked in LaCrosse County in long-term support. In April 2000, she became the Director of the Care Management Organization for Family Care in LaCrosse. She is now the Long Term Support Manager for LaCrosse County Department of Human Services.

Lynn Friss Feinberg, MSW
Director of Research and Information Programs, Family Caregiver Alliance, 690 Market Street, Suite 600, San Francisco, CA 94104
Tel: 415-434-3388, Fax: 415-434-3508, E-mail: lfeinberg@caregiver.org (2000 Article) (2000 Report)
Lynn Friss Feinberg is the Director of Research and Information Programs at the San Francisco-based Family Caregiver Alliance (FCA) where she manages the agency's research, policy development, information clearinghouse, and technical assistance programs. She directs the Statewide Resources Consultant contract with the California Department of Mental Health, coordinating the cross-site replication of FCA's model family support program through a statewide system of 11 non-profit Caregiver Resource Centers in California. In addition, she is Co-Principal Investigator of a research study, funded by the Retirement Research Foundation, to examine decision-making and service use in caregiving families over time. Ms. Feinberg has over 20 years experience in the field of aging where she has also served as area agency planner and evaluator, and conducted policy research at the University of California, San Francisco. She is the author or co-author of over 30 publications and has lectured widely on family caregiving, long-term care systems development, and the interface of research and practice. She serves on the Board of Directors of the American Society on Aging (ASA); is a Delegate to the National Council on the Aging's National Institute on Community-Based Long-Term Care; an Associate Editor of The Journal of Mental Health and Aging; and a member of ASA's Generations Editorial Board. She holds a Master's degree in Social Welfare with a specialization in aging from the University of California, Berkeley.

Dennis Fitzgibbons
Director of Operations, Alpha One, 127 Main Street, South Portland, ME 04106
Tel: 207-767-2189, Fax: 207-799-8346, E-mail: dennis_fitzgibbons@alpha-one.org
Affiliation: Consumer Advocate and Service Provider
Dennis Fitzgibbons is the Director of Operations for Alpha One, a nationally recognized Center for Independent Living based in South Portland, Maine. He is the Project Director of Home to the Community, a Robert Wood Johnson Foundation grant to Alpha One that is enabling people with disabilities to move out of Maine nursing homes and re-establish life in the community. Mr. Fitzgibbons has served on numerous long-term care public policy task forces at the state and national level. He has been instrumental in the development and administration of consumer-directed fiscal and supportive intermediary services for people with disabilities of all ages.

Susan Flanagan
Senior Consultant, EP&P Consulting, Inc., 1201 Pennsylvania Avenue, N.W., Suite 325, Washington, DC 20004
Tel: 202-628-1134, Fax: 202-628-1140, E-mail: sflanagan@eppconsulting.com (Presentation) (2000 Article) (1997 Report)
Susan Flanagan is a senior consultant at EP&P Consulting, Inc., in Washington, DC. She has over 19 years experience with long-term care and disability programs, finance and quality assurance on the federal, state and corporate levels. Ms. Flanagan has conducted extensive research on state and Medicaid-funded participant-driven support service programs for persons with disabilities of all ages and the use of various intermediary service organization (ISO) models to facilitate individuals' use of these programs. Her research has resulted in the completion of two reports for the U.S. Department of Health and Human Services' Office of the Assistant Secretary for Planning and Evaluation. They are: Consumer-Directed Attendant Services: How States Address Tax, Legal and Quality Assurance Issues (1994) and Using ISOs to Facilitate the Use of CD-PAS: Key Operational Issues for State Program Administrators (1997) with Pamela S. Green. She has assisted seven states and four county government human service agencies in developing and implementing self-determination projects that use participant-driven support services and intermediary services, and she is a frequent speaker on the topic. Ms. Flanagan is also an Adjunct Assistant Professor in the Health Services Department at the Boston University School of Public Health.

John W. Foley
Executive Director, The Arc of New Mexico, 3655 Carlisle N.E., Albuquerque, NM 87110
Tel: 505-883-4630, Fax: 505-883-5564, E-mail: jfoley@arcnm.com
John Foley is a parent of a 38-year-old daughter with a developmental disability. He has worked for The Arc at local, state, and national levels in organizational and public policy development in Nebraska and New Mexico. He directed a regional service system in Nebraska.

Tommy Ford
CLASS Unit Manager, Texas Department of Human Services, P.O. Box 149030, 701 West 51st Street, Austin, TX 78714-9030
Tel: 512-438-3689, Fax: 512-438-5135, E-mail: tommy.ford@dhs.state.tx.us
Affiliation: Home and Community-Based Medicaid Waiver Program Director
Tommy Ford is a graduate of Baylor University with a B.A. in Secondary Education and an all-level Special Education endorsement with experience as a teacher and Vocational Assessment Coordinator. Mr. Ford was a Regional Director of nursing facilities, ICFs-MR, ICF-MR/RC, and 1915(c) waiver programs for a provider agency in Texas. He served on various state agency committees and on the board of Texas Health Care Association. Mr. Ford has been the Unit Manager of the CLASS program at the Texas Department of Human Services since November. CLASS will initiate the state's Vendor Fiscal Intermediary Option, followed by all other home and community-based programs in Texas.

Wendy Fox-Grage
Senior Policy Specialist, National Conference of State Legislatures, 444 North Capitol Street, N.W., Suite 515, Washington, DC 20001
Tel: 202-624-3572, Fax: 202-737-1069, E-mail: wendy.fox-grage@ncsl.org
Wendy Fox-Grage is a Senior Policy Specialist at the National Conference of State Legislatures (NCSL), a non-profit association that represents state legislators and legislative staff. She has been employed by NCSL (formerly the Intergovernmental Health Policy Project) for six years. In this position, she follows initiatives across the 50 states regarding aging, long-term care, and end-of-life issues. Specifically, she prepares analytic reports on state activities; provides technical assistance; writes articles for the biweekly newsletter; and conducts educational meetings for state legislators and legislative staff.

Richard L. Fredrickson
Vice President of Special Needs, AMERIGROUP, 399 Thornall Street, 9th Floor, Edison, NJ 08818
Tel: 732-452-6046, Fax: 732-906-2021, E-mail: rfredric@amerigroupcorp.com
Affiliation: Healthcare Plan
Rick Fredrickson is responsible for the development and implementation of health care programs for people with disabilities for Amerigroup Corporation. Amerigroup is a public sector only managed care organization serving over 300,000 members in five states. Mr. Fredrickson served in a primary leadership role during the Star Plus, a pilot program for consumers with disabilities in Houston, Texas. This innovative program combined acute health and behavioral health services with home and community supports within an integrated care coordination setting. The program serves over 55,000 consumers. Currently, he is leading Amerigroup's efforts in the roll-out of managed care for people with disabilities in New Jersey. Previously, Mr. Fredrickson served in a leadership capacity with United Healthcare in Miami, Florida, in the nursing home diversion pilot, ElderCare. Additionally, he serves on the board of Easter Seals NJ; the advisory board of the Camden County Disabled Services; and the NJ Aged, Blind and Disabled Task Force. He is an avid advocate of consumer choices and direction in all healthcare and community support decisions. He has authored several position papers and presented on "Advocacy from Within Healthcare Systems" to managed care professional, consumers, and caregivers.

William E. Fuller, LSW, MBA
Consultant, PAAS, 156 Cole Lane, Winchester, VA, 22602
Tel: 804-225-3128, E-mail: buffel@wmfuller.com
William Fuller had polio at age two. He walked with braces and crutches until 1988 when wheelchair technology and general accessibility improved to the point where he could get around in a wheelchair faster than on braces and crutches. Mr. Fuller graduated from West Virginia University in 1973 with a degree in Social Work and began a career with the West Virginia Department of Vocational Rehabilitation. He began as a rehabilitation counselor in 1974 and received a promotion to Administrator of the Elkins, West Virginia, region in 1975. Mr. Fuller left the department in 1980 to pursue his interests in business and opened a hardware store that he operated successfully until 1982 when he accepted an appointment as Director of Finance and Development at Grafton School in Berryville, Virginia, a school for children with autism. While working at Grafton School, Mr. Fuller earned a Master's degree in Business Administration from Shenandoah University where he concentrated in Finance and Information Management. Subsequently, he accepted an appointment as Executive Director of Access Independence, an independent living center serving severely disabled people in the Northern Shenandoah Valley. In 1995, he designed the fiscal intermediary PAS system still in use in Virginia. In 1997, Mr. Fuller opened a consulting firm, Paragon Consulting, working with groups interested in improving independence and choice for people with very serious disabilities. He holds several prestigious awards including the President's Award, the Disabled Businessman of the Year award, and the National Disabled Scholar Award. He is a former wheelchair athlete and nine-time finisher of the Marine Corps Marathon. Mr. Fuller is a Ph.D. candidate in Urban Services at Virginia Commonwealth University. He has published several articles in the field of disability policy and recently completed a Legislative Housing Study for the Virginia General Assembly, Disability Services Commission chaired by Lt. Governor John Hager.

Robert Gallant
Executive Director, Highland Valley Elder Services, 1320 Riverside Drive, Suite B, Northhampton, MA 01062
Tel: 413-586-2000, Fax: 413-584-7076, E-mail: qll@highlandvalley.org
Affiliation: Consumer Advocate
Robert Gallant holds Masters degrees from Middlebury and Columbia University Teachers Colleges. He was President of Center for Understanding Aging and Massachusetts Intergenerational Network, and had a gubernatorial appointment on the Massachusetts Community Service Commission. He is Executive Director of Highland Valley Elder Services, a non-profit Area Agency on Aging, and Home Care Corporation, linking Western Massachusetts elders to resources for Quality Long Living. He is nationally recognized for innovative, empowering and positive approaches to aging, and developed Massachusetts's piloting of Consumer Direction in Community-Based Long Term Care for statewide implementation. Mr. Gallant is a graduate of National Leadership Institute on Aging, and gives presentation on increasing participant and community empowerment.

Raymond Gerke
Self Advocate, WRC, 1251 334th Street, Woodward, IA 50276
Tel: 515-438-3139, Fax: 515-438-3122, E-mail: rgerke@dhs.state.ia.us
Raymond Gerke has worked for WRC since 1977. His positions are Co-Chairperson on the Human Rights Committee, Chairperson for the Environmental Awareness Committee, Committee member of the Equal Employment Opportunity Committee. He is also the main staff support for the Woodward Client Council, offering technical support, training activities in self-advocacy and self-determination, and assists management by bringing issues to the Council for input, arranging for a representative from management to give presentations. He has been associated with several organizations within Iowa over the last 30 years. Including United Cerebral Palsy of Iowa; Arc of Iowa; Arc Dallas County, National Association for Persons in Supported Employment; Iowa Association for Persons in Supported Employment; Legal Services Corporation of Iowa, South Central Region; Mental Health/Developmental Disabilities/Brain Injury Advisory Council for Dallas County; System Change Network; Department of Vocational Rehabilitation Services, Independent Living Advisory Council; Personal Assistant Service/Comprehensive Family Services Council; and Medicaid Infrastructure Grant Workgroup for Personal Attendant Services.

Robert M. Gettings
Executive Director, National Association of State Directors of Developmental Disabilities Services, 113 Oronoco Street, Alexandria, VA 22314
Tel: 703-683-4202, Fax: 703-684-1395, E-mail: rgettings@nasddds.org
Robert Gettings has served as Executive Director of the National Association of State Director of Developmental Disabilities Services since the organization opened its first headquarters office in 1970. In this capacity, he is responsible for representing the interests of the 50 state developmental disabilities agencies in Washington, DC and facilitating communication among the states concerning the most effective means of serving citizens with lifelong disabilities. Prior to joining the Association, Mr. Gettings was on the staff of the President's Committee on Mental Retardation and the National Association for Retarded Children. Mr. Gettings has written and lectured extensively regarding the impact of federal legislative and administrative policy on the delivery of state and local services to persons with mental retardation and other developmental disabilities and is widely recognized as a leading expert in this area. He also helped many states solve a variety of service delivery problems over the years and, consequently, is well-versed in program developments and trends across the country. A Life Member of the American Association on Mental Retardation, he recently was recognized by the National Historic Trust on Mental Retardation as one of 36 major contributors to the mental retardation field during the 20th Century.

Christine S. Gianopoulos
Director, Bureau of Elder and Adult Services, Maine Department of Human Services, 11 State House Station, 35 Anthony Avenue, Augusta, ME 04333-0011
Tel: 207-624-5335, Fax: 207-624-5361, E-mail: christine.gianopoulos@state.me.us
Christine Gianopoulos has been the Director of the Bureau of Elder and Adult Services, Maine's State Unit on Aging, since 1987. The Bureau of Elder and Adult Services administers all state and federally funded programs for elders; the adult Protective and Public Guardianship programs; Medicaid home and community-based care service; the state's long-term care pre-admission assessment services; and the Certificate of Need program for nursing homes. Prior to joining the Bureau, she was a Research Associate at the University of Southern Maine's Edmund Muskie Institute of Public Affairs, specializing in the areas of vocational rehabilitation and independent living. Ms. Gianopoulos has a B.A. in Economics from the University of Pittsburgh and a M.P.A. from Syracuse University. Her professional and community affiliation include serving on the boards of the National Association of State Units on Aging and the Board for the Home and Community-Based Services Resource Network project sponsored by HCFA and ASPE. She is a past President of the NASUA. Closer to home, Ms. Gianopoulos serves on the board of the Rural Community Action Ministry, a local community development agency, as well as the Green Conservation commission.

Gladys Gonzalez-Ramos, PhD
Associate Professor of Social Work, School of Social Work, New York University, One Washington Square North, Room 309, New York, NY 10012
Tel: 212-998-5932, Fax: 212-995-4836, E-mail: gmgl@nyu.edu
Affiliation: Educator and Researcher
Dr. Gladys Gonzalez-Ramos has been involved in program development, service delivery, research, and consultation to the Latino community for the past 20 years. As an experienced mental health practitioner, she has helped to establish and coordinate several mental health programs. More recently, she received private foundation funding to design model services for indigent patients with Parkinson's Disease and their caregivers. Dr. Gonzalez-Ramos is currently co-chairing a national task force for the development of comprehensive services for underserved communities with Parkinson's Disease.

Rick Greene
Policy Analyst, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201
Tel: 202-205-2814, Fax: 202-260-1012, E-mail: rick.greene@aoa.gov
Affiliation: Government
Rick Greene is involved in implementing the National Family Caregiving Support Program and developing health promotion programs for older adults. Prior to joining the Administration on Aging, he was employed by the New Jersey Department of Health and Senior Services for almost 30 years where he administered numerous service programs for older adults and their caregivers.

Gayle M. Hafner, JD
Staff Attorney and Maryland ADAPT Organizer, Maryland Disability Law Center, 1800 North Charles Street, Suite 400, Baltimore, MD 21201
Tel: 410-727-6352, Fax: 410-666-5080, E-mail: marylandadapt@yahoo.com
Gayle Hafner has been disabled for 44 years, a wheelchair user for 35 years, a lawyer for 20, and a disability rights activist for 6 years. For most of her legal career, she has been a children's advocate. Ms. Hafner has successfully represented a child before the U.S. Supreme Court and thousands of children in foster/kinship care reform class actions. She served briefly as a state administrative law judge and advocated on behalf of hundreds of people with low incomes in four different states' programs. As one of the first OSI (Soros)-Baltimore Community Fellows, she helped empower kinship caregivers for children with disabilities to be more effective self-advocates and stronger voices with their children. Ms. Hafner's arrest record, though short, is an important as her advocacy record. She has recently started working with the P&A, MDLC.

Ruth A. Hagestuen, RN, MA
National Program Director, National Parkinson Foundation, 4147 Vincent Avenue South, Minneapolis, MN 55410
Tel: 612-915-9126, Fax: 612-920-5276, E-mail: hagestuenr@aol.com
Affiliation: Developer of Care Initiatives, Community Organizer and Consumer Advocate
Ruth Hagestuen has a strong interest in the development of services designed to reach the whole Parkinson's community, providing resources to achieve the best possible quality of life. Her experience includes 15 years of leadership in a multi-disciplinary team process dedicated to the development of specialized, comprehensive services for persons with Parkinson's Disease. Ms. Hagestuen has recently joined the National Parkinson Foundation and works collaboratively to develop nationwide initiatives through networks of centers, chapters, and other interested partners/funders.

John Halloran
Managing Director, European Social Network, 8 Paston Place, Brighton BN2 1HA United Kingdom
Tel: +44 1273 603546, Fax: +44 1273 670487, E-mail: john.halloran@socialeurope.com
John Halloran is the Managing Director of the European Social Network, which represents 17 national associations of directors of public social welfare. He directs a number of European Commission funded social policy and good practice programs. Mr. Halloran previously worked as a consultant in change management, including research for the Department of Health and the Scottish Office. For 10 years he was a senior manager of public welfare services in the city of Brighton, responsible for residential and community services for the elderly, persons with disabilities, and family and child protection services.

Cindy Hannum
Assistant Administrator, Senior and Disabled Services Division, Oregon Department of Health Services, 500 Summer Street, N.E., #E13, Salem, OR 97301-1074
Tel: 503-945-5833, Fax: 503-378-8966, E-mail: Cindy.HANNUM@state.or.us
Cindy Hannum is the Assistant Administrator of Senior and Disabled Services Division overseeing long-term care quality programs including nursing facility, community-based care, and in-home care standards and programs. Ms. Hannum supervises nursing facility survey and certification, state licensing for all community-based care facilities, such as adult foster home and assisted living, and provider standards for all Medicaid nursing facility and community-based care programs. Ms. Hannum has 25 years experience in social service and long-term care programs for elderly and hold a B.A. degree from the University of Michigan.

Melissa L. Harris
Health Insurance Specialist, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244
Tel: 410-786-3397, Fax: 410-786-3262, E-mail: mharris1@cms.hhs.gov
Affiliation: Government
Melissa Harris has been with the Centers for Medicare and Medicaid Services (formerly the Health Care Financing Administration or HCFA) since 1995, after graduating with a B.S. degree in Accounting from Salisbury State University. She currently works in the Division of Integrated Health Systems, within the Disabled and Elderly Health Programs Group in HCFA's Center for Medicaid and State Operations. Her main responsibilities include Program of All-inclusive Care for the Elderly (PACE) policy and operations, and processing Section 1915(b) managed care waiver and Section 1115 demonstration proposals. Ms. Harris also oversees the management of funds awarded to five states to enhance the services provided to children with life-threatening conditions and their families.

James L. Head, Jr.
Senior Vice President, South Carolina Hospital Association, 101 Medical Circle, West Columbia, SC 29171
Tel: 803-796-3080, Fax: 803-796-2938, E-mail: jhead@scha.org
Affiliation: Researcher
James Head presently serves as Senior Vice President of the South Carolina Hospital Association, where he is responsible for overall coordination of Association activities in the areas of health care finance, managed care, data, and continuum of care. Prior to coming to SCHA in 1979, he worked with Ernst and Whinney for five years as a health care consultant. A native of New York, Mr. Head attended the U.S. Military Academy for two years before receiving his undergraduate degree from Johns Hopkins University in 1972, and a M.B.A. from the Amos Tuck School at Dartmouth College in 1974. He is a Fellow in the American College of Healthcare Executives, a certified member of the American Society of Association Executives, and a Fellow and past National Board member of the Healthcare Financial Management Association.

Leslie Hendrickson, PhD
Assistant Commissioner, New Jersey Department of Health and Senior Services, P.O. Box 722, Trenton, NJ 08625-0722
Tel: 609-588-2611, Fax: 609-588-3499, E-mail: lhendrickson@doh.state.nj.us
Affiliation: State Medicaid Program
Leslie Hendrickson supervises home and community-based Medicaid programs, pre-admission screening, the Community Choice Program, and field office operations in New Jersey. Prior to working with New Jersey, he worked in the Senior and Disabled Services Division of Oregon's Department of Human Resources. In Oregon, Dr. Hendrickson supervised in-home policy, eligibility, General Assistance policy, and provider relations. He has over 15 years of Medicaid experience and holds a Ph.D. in Sociology from the University of Oregon where he specialized in statistics and research methods.

Chris Hess
Assistant Director, Milwaukee County Department on Aging, 235 West Galena Street, Milwaukee, WI 53212
Tel: 414-289-6104, Fax: 414-289-8590, E-mail: chess@milwaukeecounty.com
Affiliation: Administrator
Chris Hess oversees the Milwaukee County Department on Aging's Long Term Support programs. Her department is involved in piloting Family Care, Wisconsin's managed care initiative. Integral to this pilot is a program of Self-Directed Supports (SDS). The Milwaukee SDS model includes utilization of an Advanced Directive for Long Term Support, a curriculum to train elders for self-determination, and a SDS peer-support group.

Judith E. Heumann
President, Heumann and Associates, 3133 Connecticut Avenue, N.W., #427, Washington, DC 20008
Tel: 202-332-5497, E-mail: judithheumann@aol.com
Affiliation: Consultant, Disability Rights
Judith Heumann served in the Clinton Administration's Department of Education as the Assistant Secretary for the Office of Special Education and Rehabilitation Services for the last eight years. Ms. Heumann was responsible for national programs in special education, disability research, vocational rehabilitation and independent living, serving youth and adults with disabilities. She now heads her own consulting firm, Heumann and Associates. She has assisted in legislation such as the Individuals with Disabilities Education Act and the Americans with Disabilities Act. She also helped establish the first public policy research think tank devoted to disability issues, known as the World Institute on Disability. An internationally recognized leader in the disability community, Ms. Heumann is a lifelong civil rights advocate for disadvantaged people.

Nicolette (Nikki) Highsmith, MPA
Director of Policy, Center for Health Care Strategies, 1009 Lenox Drive, Suite 204, Lawrenceville, NJ 08648
Tel: 609-895-8101, Fax: 609-895-9648, E-mail: nh@chcs.org
Nikki Highsmith is Director of Policy at the Center for Health Care Strategies, Inc., and is Director of the State Medicaid/CHIP Purchasing Institute. The State Medicaid/CHIP Purchasing Institute is a program designed to build the purchasing capacity of state Medicaid and SCHIP agencies. She also manages many of the Center's grantmaking and technical assistance activities under the Robert Wood Johnson Foundation's Medicaid Managed Care Program. The Center for Health Care Strategies is a non-profit, policy resource center that promotes high quality care for low income populations and people with chronic illnesses and disabilities. She has significant experience in Medicaid managed care, both as a state purchaser and a federal budget official. Previously, Ms. Highsmith was the Deputy Director of the Medicaid Managed Care Program for the State of Massachusetts were she purchased health care on behalf of 150,000 Medicaid beneficiaries. Ms. Highsmith was also a senior Medicaid analyst at the Office of Management and Budget, Executive Officer of the President in Washington, D.C., where she was responsible for approving Medicaid managed care waivers. She has a bachelor's degree in History from the University of Texas and holds a Master's degree in Public Administration from American University.

Kendra Holden
Participant, Florida Developmental Disabilities Consumer-Directed Care Project, 9437 Rockrose Drive, Tampa, FL 33647-2813
Tel: 813-973-0374, E-mail: kendraholden@aol.com
Affiliation: Consumer
Kendra Holden, a moderately retarded lady, wants to improve her abilities. She volunteered 100 hours at the VA Hospital and helps two days a week at Hunters' Green Elementary with the physically impaired children. Ms. Holden also works at a workshop. She likes choosing her employees. Ms. Holden's father, her companion, taught her to use the computer and signed her up with E-Buddies, a program that provides e-mail friendships. Speaking at the Loyola University E-Buddy Conference was a huge accomplishment for this individual, a diabetic, who required intensive therapy to walk and talk.

Kenneth Holden
Participant, Florida Developmental Disabilities Consumer-Directed Care Project, 9437 Rockrose Drive, Tampa, FL 33647-2813
Tel: 813-973-0374, E-mail: bigkenholden@aol.com
Affiliation: Consumer
Kenneth Holden, a moderately retarded man, is an insulin-dependent diabetic with other health problems. The freedom of choice has provided Mr. Holden with knowledgeable companions. He volunteers with the physically impaired children at Hunters' Green Elementary and works at a workshop. At age six, his father died, leaving him emotionally shattered. With his mother's remarriage, he developed a close relationship with his step-father. His step-father, his companion, taught Mr. Holden how to use the computer to e-mail. Mr. Holden was the first E-Buddy, a program of e-mail friendships and this was shared on the Oprah Winfrey Show recently.

Claudia Hoppe
Consumer Directed Care Outreach Coordinator, Florida Department of Elder Affairs, 4040 Esplanade Way, Tallahassee, FL 34399-7000
Tel: 813-293-1230, Fax: 813-996-5139, E-mail: Cahoppe@earthlink.net
Claudia Hoppe is the Outreach Coordinator for Consumer Directed Care with the Department of Elder Affairs. Ms. Hoppe obtained her degree in the field of Gerontology. She has expertise as a Geriatric Mental Health Counselor; Training Specialist, Case Manager; CDC Consultant; and a professional in the aging and social services professions. Ms. Hoppe worked as a research assistant at the Department of Aging and Mental Health at University of Southern Florida. She was the recipient of a graduate award for her research in "Pain Management in the Elderly" in conjunction with the Senior Adult Oncology Program at the Moffitt Cancer in Tampa, Florida. Her current responsibilities include the oversight of ten outreach specialists for consumer directed care covering 19 counties in the State of Florida.

Mike Huckabee
Governor of Arkansas, State Capitol, Little Rock, AR 72201
Tel: 501-682-2345, Fax: 501-682-3597, E-mail: info@gov.state.ar.us
Mike Huckabee became governor July 15, 1996. As lieutenant governor, he ascended to the office when the previous governor resigned. He became Arkansas' 44th elected governor November 3, 1998. Under Gov. Huckabee's leadership, Arkansas: Created ARKids First, which provides preventive and primary health insurance to children of working parents. Passed welfare reform measures that helped reduce welfare rolls by almost 50%. For the first time in state history saw a major, broad-based tax cut. Passed education reforms that encourage character education in schools, expand the availability of college scholarships, provide for the creation of charter schools and establish a new approach to workforce education. Passed the "Property Taxpayers' Bill of Rights." Passed legislation that simplifies auto registration, previously a time-consuming enterprise. Began the largest road construction project in Arkansas history. Saw to it that all of the tobacco settlement money was devoted to improving the health of Arkansans.

Gail Gibson Hunt
Executive Director, National Alliance for Caregiving, 4720 Montgomery Lane, Suite 642, Bethesda, MD 20814
Tel: 301-718-8444, Fax: 301-652-7711, E-mail: gailhunt.nac@erols.com
Affiliation: Research and Advocacy
Gail Hunt is Executive Director of the National Alliance for Caregiving (NAC), a non-profit organization dedicated to conducting research and developing national programs for family caregivers and the professionals who serve them. Prior to heading NAC, Ms. Hunt was President of her own aging services consulting firm for 14 years. She conducted corporate elder care research for the National Institute on Aging and the Social Security Administration, developed training for caregivers with AARP and the American Occupational Therapy Association, and designed a corporate elder care program for EAP with the Employee Assistance Professional Association. Prior to having her own firm, she was a senior manager in charge of human services for the DC Office of KPMG Peat Marwick. She attended Vassar College and graduated from Columbia University in New York.

Ed Hutton
Technical Director, Centers for Medicare and Medicaid Services/CMSO, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244-1850
Tel: 410-786-6616, Fax: 410-786-3262, E-mail: ehutton@cms.hhs.gov
Affiliation: Researcher/Administrator
Ed Hutton has 10+ years with HCFA (now CMS) designing, administering, and evaluating health services demonstrations. He contributes to Medicare and Medicaid demonstrations, which provide care for families, children, aged, and persons with disabling conditions. His current focus is Section 1115 demonstrations of consumer-directed care and service delivery for the aged and persons with disabling conditions; waiver programs of managed care for long-term care; and permanent provider status for PACE.

Patricia Janik
Program Specialist, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201
Tel: 202-619-1352, Fax: 202-260-1012, E-mail: patricia.janik@aoa.gov
Affiliation: Government Service
Patricia Janik is a program specialist in the Office of State and Community Programs, whose are of concentration is home and community-based long-term care. She works on the new Caregiver program, the Alzheimer's Demonstration Grants to states, and other home and community-based services issues. Prior to this, Ms. Janik worked as a direct service provider.

Rick Jelinek
Executive Vice President, Business Development, Evercare, 9900 Bren Road East, Minnetonka, MN 55343
Tel: 952-936-6847, Fax: 952-936-6902
Rick Jelinek is Executive Vice President at Evercare, a division of UnitedHealth Group. Evercare is a national health care service organization focusing on the well-being of frail, elderly, and chronically ill individuals residing in an institution or within home and community-based settings. Evercare is a risk-based provider of Medicare and Medicaid programs and currently participates in several Medicaid managed long-term care initiatives across the country. Mr. Jelinek received has B.S. in Business Administration from the University of Southern California, and a Master's degree in Health Services Administration and a M.B.A. from the University of Michigan.

Bobby P. Jindal
Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, 200 Independence Avenue, S.W., Washington, DC 20201
Tel: 202-690-7858, Fax: 202-690-7383
Bobby Jindal was sworn-in as the Assistant Secretary for Planning and Evaluation for the Department of Health and Human Services on July 9, 2001. Prior to joining HHS, he was the University of Louisiana System president, one of the largest higher education systems in the nation. During his tenure, Mr. Jindal was instrumental in raising graduation and retention rates, increasing private donations and the number of endowed chair positions. He also implemented the state’s first teacher guarantees and faculty rotation programs. In 1998, Mr. Jindal was named executive director of the National Bipartisan Commission on the Future of Medicare, a panel charged with developing a plan to reform Medicare. He brought with him expertise as Louisiana’s Department of Health and Hospitals Secretary, a position Mr. Jindal held from 1996 to 1998. As Secretary, Mr. Jindal was responsible for a $4 billion budget, and managed to eliminate the department’s $400 million deficit. He began his career as a consultant at McKinsey & Company. Mr. Jindal graduated magna cum laude from Brown University with degrees in biology and public policy. Mr. Jindal, a Rhodes scholar, received his Master’s degree in politics from Oxford University.

Catriona Johnson
Director of Public Policy Initiatives, Maryland Developmental Disabilities Council, 300 West Lexington Street, Box 10, Baltimore, MD 21201
Tel: 410-333-3688, Fax: 410-333-3686, E-mail: catrionaj@md-council.org
Affiliation: Parent, Advocate, Funder
Catriona Johnson is the parent of an 8-year-old with autism and a Partners in Policymaking graduate. She now works professionally in the field developing and implementing systems-change activities in areas of early childhood, education, health, family and individual support services, and housing on behalf of individuals with disabilities. She monitors grants and serves on several task forces and committees, including the Special Education State Advisory Committee; State Interagency Coordinating Council; Developmental Disabilities Administration Family Support Services and Individuals Support Services Task Forces; Task Force on Educating Young Children with Autism; and Home of Your Own Coalition. Ms. Johnson previously worked in areas of violence against women.

J. Rock Johnson, JD
1342 South 11th Street, Lincoln, NE 68502-1219
Tel: 402-484-0202, E-mail: jrock10@sprynet.com
Affiliation: Advocate
J. Rock Johnson's experience includes serving as Director on the Board of the Nebraska Protection and Advocacy Agency; NAMI, National Alliance for the Mentally Ill; and public representative on the behavioral health advisory committee, Joint Commission on the Accreditation of Healthcare Organizations; consultant to the Bazelon Center for Mental Health Law and Psycho-Social Rehabilitation Project in Sarajevo, Bosnia. He served on the Planning Board, Mental Health: A Report of the Surgeon General, and participated in the White House Conference on Mental Health. Mr. Johnson's interests include abolishing restraint use and establishing the concepts of advance directives, consumer-directed research and self-determination as normative for people with mental illnesses.

Judith Miller Jones
Director of National Health Policy Forum, Adjunct Professor for Department of Health Care Sciences, George Washington University, 2131 K Street, N.W., Suite 500, Washington, DC 20037
Tel: 202-872-1390, Fax: 202-862-9837, E-mail: jmjones@gwu.edu
Judith Miller Jones has been Director of the National Health Policy Forum (NHPF) at the George Washington University since its inception in 1972. The Forum is a non-profit educational program providing an informal, nonpartisan, off-the-record setting for congressional staff and federal agency officials to meet with experts from various health care arenas for discussions on a wide range of health policy issues. Over the years, the Forum has developed a unique role and reputation for its in-depth coverage of complex subjects, especially through its conduct of comprehensive site visits and publication of issue briefs and other documents that are highly regarded for their clarity and objectivity. Often referred to as the "institutional memory" of health policy, NHPF has spawned look-alike programs in Europe and a number of states, with many organizations now emulating various of its products and activities. In 1988, Ms. Jones became a member of the National Committee on Vital and Health Statistics and served as its chair from 1991 through 1996. This major advisory body to the Secretary of Health and Human Services addresses a wide variety of data-related issues, including administrative simplification and confidentiality. She is a lecturer at George Washington University, serves as a mentor at the Wharton School's Health Care Management Program, and on occasion consults with nonprofit groups across the country. Previously, Ms. Jones served as Special Assistant in the Office of the Deputy Assistant Secretary for Legislation in the Department of Health, Education and Welfare, and, before that, as Legislative Assistant to the late Sen. Winston L. Prouty (R-VT). Prior to her involvement in government, she worked in education and program management in the private sector.

Meg Kane
Parent/Advocate, 6813 Dearwester Drive, Cincinnati, OH 45236
Tel: 513-984-3359, Fax: 513-984-1660, E-mail: aileen7@aol.com
Affiliation: Parent Advocate
Meg Kane is a parent advocate of a son with developmental disabilities. She received leadership training from Partners in Policymaking and Project Leadership in 2000. For three years, she has been part of a planning task force for the Southwest Ohio Alliance for Direct Support Professionals. In the past, Ms. Kane has participated in Ohio's Governor's Summit on Workforce Shortage for Direct Care staff, and worked as a job coach through the vocational rehabilitation agency, Jewish Vocational Services. She is currently serving on the newly formed Consumer Taskforce for the grants offered through HCFA (now CMS) and is also Vice Co-Chair of the National Coalition on Self-Determination. Ms. Kane graduated from the State University in New York at Albany with a B.S. in Medical Technology.

Judith D. Kasper
Professor, Department of Health Policy and Management, Johns Hopkins University, Bloomberg School of Public Health, 624 North Broadway, Baltimore, MD 21205
Tel: 410-614-4016, Fax: 410-955-0470, E-mail: jkasper@jhsph.edu
Affiliation: Researcher (1996 Report)
Judith Kasper focuses on research related to health policy is disability and long-term care and assessment of needs for care and service provision to physically and mentally disabled people. She has published on the impact of variations in opportunities for consumer-directed care in Medicaid personal care programs (Doty, Kasper, and Litvak, 1996) and is particularly interested in the implications of greater consumer direction for elderly people.

Kellie K. Kim-Sung, EdD
Policy Research Analyst, Public Policy Institute, American Association of Retired Persons, 601 E Street, N.W. Washington, DC 20049
Tel: 202-434-2225, E-mail: kellie@cox.rr.com
Affiliation: Parent, Researcher
Kellie Kim-Sung is the parent of a daughter with developmental disabilities and a researcher. She strongly believes that full participation of individuals with disabilities is not only the right of the people but also enriches our society. Through involvement in The Arc of Northern Virginia and participating in the year 2000 Project Leadership sponsored by the Administration on Developmental Disabilities, Dr. Kim-Sung has gained extensive up-to-date knowledge and understanding of the related policy implementation including self-determination. She tries to share what she has learned with other immigrant parents or caregivers of children or adults with disabilities through a personal web site in Korean language (http://my.netian.com/~rugrats/) so that they can become an educated consumer. Advocating for culturally and linguistically competent service provision for minorities is another area of interest for her.

James R. Knickman, PhD
Vice President of Research and Evaluation, Robert Wood Johnson Foundation, P.O. Box 2316, Princeton, NJ 08540
Tel: 609-627-5959, Fax: 609-627-6415, E-mail: jknickman@rwjf.org
Affiliation: Funder
James Knickman is Vice President for Research and Evaluation at the Robert Wood Johnson Foundation (RWJ), one of the sponsors of the Cash and Counseling Initiative. At RWJ, Dr. Knickman has responsibility for external evaluations of national initiatives supported by the Foundation. He also is active in a range of grantmaking related to long-term care services. He led the team at RWJ that designed the Cash and Counseling Initiative with staff at ASPE and the national program office. Prior to joining the RWJ staff in 1992, Dr. Knickman was on the faculty at New York University where he conducted research on issues related to long-term care finance and delivery.

Dennis L. Kodner
Senior Vice President of Research and Innovation, Executive Director of the Institute for Applied Gerontology, Metropolitan Jewish Health System, 6323 Seventh Avenue, 3rd Floor, Brooklyn, NY 11220-4711
Tel: 718-630-2550, Fax: 718-630-2559, E-mail: dkodner@iag.mjhs.org
Affiliation: Researcher
Dr. Dennis L. Kodner oversees strategic planning and R&D activities at Metropolitan Jewish Health System (MJHS)--a major "continuum of care" health system serving the elderly and other populations with chronic and disabling conditions. In addition, he directs the Institute for Applied Gerontology--which is MJHS's research and education arm--and is on the faculties of New York Medical College, New York University, and Maastricht University, in the Netherlands. Dr. Kodner's research, policy, and practice interests include health services for the elderly and people with disabilities, long-term care financing and delivery, home and community-based services, care management for vulnerable populations, managed care systems, chronic care management, and consumer-directed care. Dr. Kodner was one of the designers of the social health maintenance organization (HMO) demonstration and served as the first Executive Director of Elderplan--the Social HMO sponsored by MJHS. He is also the developer and Principal Investigator of HomeFirst--a new home-centered managed care program for the frail elderly with various consumer-directed features.

Jan Kooistra
1115 Waivers Specialist and Tribal Relations, Health Care Administration, Minnesota Department of Human Services, 444 Lafayette Road North, St. Paul, MN 55155-3852
Tel: 651-296-1090, Fax: 651-215-9453, E-mail: jan.kooistra@state.mn.us
Jan Kooistra has worked for the past 11 years in state government, with a focus on policy development and program planing for people with disabilities. In her current position with the Department of Human Services, she develops and oversees the implementation of 1115 waivers that demonstrate and evaluate consumer-directed service delivery models.

Ken Lovan
Vice President of Development, ResCare, 10140 Linn Station Road, Louisville, KY 40223-3813
Tel: 502-394-2335, Fax: 502-394-2206, E-mail: Klovan@rescare.com
Affiliation: Provider
Ken Lovan has over 25 years of varied experience in the developmental disabilities field. He currently serves as Vice President of Development for ResCare, which is a large multi-state provider. During his 18 years with ResCare, he has worked in a variety of capacities and has participated in ResCare's growth in becoming one of the nation's leading private providers of services to persons with disabilities. Mr. Lovan's current position calls for working closely with national associations, state governments, local and regional boards, and with providers from around the country. As such, he has a unique exposure to and involvement in a vast array of service systems, trends and developments. Mr. Lovan is also working within ResCare to promote systems change and development of consumer-directed services. He also serves on the Board of Directors of ANCOR and is on a newly created "steering committee" for ANCOR's Campaign for Increased Medicaid Funding for Persons with Disabilities.

Jane Isaacs Lowe, PhD
Senior Program Officer, Robert Wood Johnson Foundation, Route 1 and College Road East, Princeton, NJ 08543
Tel: 609-627-5786, Fax: 609-514-5409, E-mail: jlowe@rwjf.org
Jane Isaacs Lowe is a Senior Program Officer at the Robert Wood Johnson Foundation. Before joining RWJF, she was a faculty member in the School of Social Work at the University of Pennsylvania. Prior to working at the university, she worked at Mt. Sinai Medical Center (New York City) where she served as a faculty member in the medical school's Department of Community Medicine and as a hospital social work administrator. Dr. Lowe has extensive experience in clinical social work, community-based health, program planning and interdisciplinary education. She earned her Bachelor's degree in Sociology and Education from Cedar Crest College, her Master's degree in Social Work from Columbia University and her Doctorate in Social Welfare Policy and Planning from Rutgers University.

Cathy Ludlum
Chair, Community Options Task Force/Olmstead, Connecticut Council of Persons with Disabilities, 46 St. James Street, Suite 16, Manchester, CT 06040
Tel: 860-649-7110, E-mail: cludlum@coopinit.org
Affiliation: Person with a Disability, Advocate for Housing and Support
Cathy Ludlum's personal and professional activities focus on the inclusion of people with disabilities in all areas of community life. She incorporates writing, speaking, and facilitation of meetings on the development of individualized support systems and various models of home ownership. Ms. Ludlum was a founder of Co-op Initiatives, a nonprofit housing developer which works to create integrated, mutually supportive communities. She has written several books, including a manual on hiring personal assistants. Ms. Ludlum has been a leader in Connecticut's response to the Olmstead decision. She has been hiring personal assistants since 1988, and has lived in a housing cooperative since 1992.

Beverly Lynch
Parent Advocate, National Coalition on Self-Determination, 2045 Steve Drive, Paducah, KY 42003
Tel: 270-575-3060, E-mail: blynch@apex.net
Affiliation: Parent
Beverly Lynch is a parent of a 10-year old son (Nevada) who has multiple complex disabilities. Nevada lives at home with his parents and is included in the 4th grade class at his neighborhood school. Ms. Lynch currently serves as a consumer representative on the Kentucky Developmental Disabilities Council; parent representative on the Kentucky Commission on Services and Supports for Individuals with Mental Retardation and Other Developmental Disabilities; and parent representative on the Person-Centered Funding subcommittee of the Kentucky Olmstead Plan Committee. Ms. Lynch is founding member of the National Coalition on Self-Determination; a 2000 graduate of Project Leadership; a 1996 graduate of Kentucky Partners in Policymaking; and a supporter of the Community Imperative.

Kevin J. Mahoney, PhD
Associate Professor, National Project Director for Cash and Counseling Demonstration and Evaluation, Boston College Graduate School of Social Work, McGuinn Hall, Room 306, 140 Commonwealth Avenue, Chestnut Hill, MA 02467
Tel: 617-552-4039, Fax: 617-552-1975, E-mail: kevin.mahoney@bc.edu (Presentation) (2000 Article) (2000 Article)
Kevin J. Mahoney is a faculty member at the Boston College Graduate School of Social Work where he serves as Associate Professor as well as National Program Director for the Cash and Counseling Demonstration and Evaluation, a policy-driven evaluation of one of the most unfettered forms of consumer direction of personal assistance services, funded by the Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services. During his 25 year career in gerontology and long-term care, Dr. Mahoney has served in a number of policy making and administrative positions in the state governments of Connecticut and California. Prior to coming to Boston College in 1999, he held academic appointments at Yale University, the University of Connecticut, the University of California-San Francisco and the University of Maryland. From 1978 to 1987, Dr. Mahoney served as Chief of Research and Program Development at the Connecticut Department on Aging where he was responsible for that state's home care programs for the frail elderly. From 1987 to 1995, Dr. Mahoney developed and implemented innovative partnerships between private insurance and Medicaid to finance long-term care--first in the State of Connecticut and then in the State of California. An expert on state government and long-term care innovation, he speaks and writes extensively on consumer-direction, the roles of the public and private sectors in financing long-term care, long-term care insurance and care management. Most recently, Dr. Mahoney became Deputy Director of the Home and Community-Based Services Resource Network established by the U.S. Department of Health and Human Services.

Lisa Mangieri
7 Pinho Avenue, Carteret, NJ 07008
Tel: 732-969-0716, E-mail: lisamangieri@compuserve.com
Lisa Mangieri graduated Ramapo College in New Jersey with a B.A. in Psychology. While she lived on campus, she became a pilot member of the now successful PASP. Ms. Mangieri is a member of the Middlesex County Local Advisory Council on the Personal Assistance Services Program; wrote feature articles (1995-1997) for the Alliance for the Disabled in Action; and Monday Morning Advocacy Network of Middlesex County which gives people with disabilities a role in creating public policy. Additionally as a disabled consumer, she contributes to the Medical Assistance and Health Services Advisory Council which discusses plans for New Jersey Medicaid and the New Jersey Personal Preference Program, which empowers Medicaid consumers.

Beth McArthur
Director of Planning and Development, Connecticut Department of Mental Retardation, 460 Capital Avenue, Hartford, CT 06106
Tel: 860-418-6132, Fax: 860-418-6003, E-mail: Beth.McArthur@po.state.ct.us
Affiliation: State Administrator (Presentation)
Beth McArthur served as one of the state's co-directors for the Robert Wood Johnson Foundation Self-Determination Initiative's 4-year grant that formally ended in January 2001. As Director of Planning and Development in the department's Strategic Leadership Center, she continues to lead the state's effort to shift its traditional service system to one that is self-directed by consumers and families. She has worked for the Department of Mental Retardation for over 20 years, directing and supporting system change initiatives including person-centered planning, positive behavioral supports, and quality improvement.

Portia McCormack
Director of Membership Outreach, Independence Care System, 257 Park Avenue South, 2nd Floor, New York, NY 10010-7304
Tel: 212-584-2500, Fax: 212-584-2555, E-mail: mccormack@icsny.org
Portia McCormack coordinates the marketing and enrollment activities of Independence Care System (ICS), a non-profit, Medicaid managed long-term care plan in New York City. ICS is especially designed to meet the needs of people with physical disabilities who are over the age of 21. ICS provides assistance to people with disabilities to manage their own individual care needs including facilitating access to consumer-directed personal assistance. Ms. McCormack has a Master's degree in Social Work from the Hunter College School of Social Work, and has many years of experience in health care practice and administration. In her previous position as the Corporate Director of Social Work Services for the New York City Health and Hospitals Corporation, Ms. McCormack frequently advocated for the younger disabled population who had difficulty accessing coordinated home and community-based care.

Mark R. Meiners, PhD
Associate Professor and Associate Director, University of Maryland Center on Aging, 1240 HHP Building, College Park, MD 20742
Tel: 301-405-2532, Fax: 301-314-2025, E-mail: mm56@umail.umd.edu, Web site: www.inform.umd.edu/aging
Mark Meiners is Associate Professor and Associate Director for the University of Maryland Center on Aging in College Park. He is the Director of the Robert Wood Johnson Foundation (RWJ) Medicare/Medicaid Integration Program, an initiative designed to help states develop new systems of care that better coordinate acute, post-acute, and long-term care. He is also the Director of RWJ Partnership for Long-Term Care, an innovative state-based long-term care insurance program, and has led this initiative since its beginning in 1987. Dr. Meiners holds a Ph.D. and M.A. in Economics from Georgetown University, and a B.A. from the University of Wisconsin. Dr. Meiners specializes in the areas of aging and health with emphasis on financing and reimbursement issues. He has written numerous publications including articles on nursing home costs, long-term care insurance, and cost of illness analysis. Dr. Meiners is nationally recognized as one of the leading experts on financing and program development in long-term care. His path-breaking research on long-term care insurance has been a major catalyst to the current interest in this topic. He has been voted one of the 100 most influential people in long-term care by McKnight's Long-Term Care News Editorial Advisory Board.

Michael Morris
Senior Vice President, Community Options, Inc., 1130 17th Street, N.W., Suite 430, Washington, DC 20036-4641
Tel: 202-721-0120, Fax: 202-721-0124, E-mail: michael.morris@comop.org
Affiliation: Researcher, Advocate
Michael Morris is the Director of the Center on Innovations established by Community Options, Inc., in 1998 in Washington, D.C. The Center is currently involved in a dozen research and demonstration projects that are regional or national in scope. A common strand among projects is a focus on empowerment and advancing self-sufficiency of individuals with disabilities. Two major projects of the Center is the U.S. Department of Education and NIDRR funded Research and Training Center on Workforce Investment and Employment Policy for Persons with Disabilities and the Administration with Developmental Disabilities funded Project Leadership which is building a nationwide network of parent and self-advocate leaders with advanced knowledge and skills in public policy development at a federal level to advance self-determination. Mr. Morris has over 20 years of experience at a state and federal level in systems change activities focused on problem solving through dialogue with diverse stakeholders; demonstration activities in partnership with government, corporations, communities, individuals with disabilities and families; and training activities to overcome challenges to individual choice and equal opportunity. Mr. Morris has a Juris Doctor degree from Emory University School of Law. He is a former Counsel to the U.S. Senate Subcommittee on the Handicapped and Small Business Committee. He was employed by United Cerebral Palsy Associations for 14 years, first as Director of Government Relations and in his last two years as National Executive Director. In 1981, he came to Washington, D.C. as the first Kennedy Foundation Public Policy Fellow.

Charles Moseley, EdD
Director, University of New Hampshire, Institute on Disability, National Program Office on Self-Determination, 7 Leavitt Lane, Suite 101, Durham, NH 03824-3522
Tel: 603-862-4810, Fax: 603-862-0615, E-mail: chas.moseley@unh.edu
Affiliation: Researcher (1999 Article) (Report)
Charles Moseley is the Director of the National Program Office on Self-Determination at the Institute on Disability and an Adjunct Professor at the University of New Hampshire. As Director of the Self-Determination Project, he manages contracts and provides technical assistance to states, individuals, and people with disabilities on self-directed supports and alternatives to managed care. Prior to working at the National Program Office on Self-Determination, he was the Director of the Vermont Division of Developmental Services where he led the efforts to close the state's institution, transition services for individuals with developmental disabilities to individualized community-based alternatives, and restructure the service delivery system to incorporate principles of self-directed services. Dr. Moseley has consulted nationally and internationally with states and organizations on individualized support alternatives, public policy and the development of effective strategies to change service delivery systems to implement the principles of self-determination. He holds a Doctorate in Special Education from Syracuse University.

Cindy Moseley
Corporate Operations Manager/Senior Financial Supervisor, Aspen Management Group LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205
Tel: 501-217-8123, Fax: 501-217-8125, E-mail: moseleycindy@aol.com
Affiliation: Counseling/Fiscal Agency
Cindy Moseley has served in account management and operations functions in health care for over 13 years. She has served roles in physician practice management, medical financial services and direct customer services to health care consumers in a variety of medical practice settings. In 1998, Ms. Moseley served an instrumental role in the implementation of the first counseling and fiscal agency in the State of Arkansas involved in the IndependentChoices consumer-direction program for personal care. As Senior Financial Supervisor, she continues to oversee the provision of financial services within the counseling/fiscal agency of Aspen Management Group.

David Murday
Assistant Director for Health Policy, Center for Health Services and Policy Research, University of South Carolina School of Public Health, Columbia, SC 28208
Tel: 803-777-0692, Fax: 803-777-8065, E-mail: murday@sc.edu
David Murday is Assistant Director for Health Policy, University of South Carolina (USC) Center for Health Services and Policy Research, and Adjunct Assistant Professor at the USC School of Public Health. His work at the Center includes funded projects working with consumer-directed services for the elderly and providing consultation to the USC State Traumatic Brain Injury Advisory Committee. Before joining the Center in 1995, he spent 10 years as Director of Research for the South Carolina General Assembly's Joint Legislative Health Care Planning and Oversight Committee. The Committee was responsible for monitoring and developing legislative initiatives involving health policy and health financing.

Christopher M. Murtaugh
Associate Director, Center for Home Care Policy and Research, Visiting Nurse Service of New York, 5 Penn Plaza, 11th Floor, New York, NY, 10001-1810
Tel: 212-290-5997, Fax: 212-290-3756, E-mail: cmurtaug@vnsny.org
Affiliation: Researcher
Christopher Murtaugh joined the Research Center at the Visiting Nurse Service of New York in October 1996. At the Center, he is responsible for directing policy relevant studies concerning access to and the cost, quality and outcomes of home and community-based care. Currently, Mr. Murtaugh is conducting research on state financing and delivery systems for home and community-based services and how these impact elders' use of formal and informal home care. Prior to joining the Center, Mr. Murtaugh worked for the Agency for Health Care Policy and Research (now AHRQ) where he was the principal or co-principal investigator for numerous studies of elderly persons with disabilities.

Bern Myers, JD
Executive Director, Barrier Free Futures, Inc., P.O. Box 4495, Santa Fe, NM 87502
Tel: 505-670-1251, Fax: 505-473-5887, E-mail: barrierfree@qwest.net
Affiliation: Consumer Advocate
Bern Myers is the Executive Director of Barrier Free Futures, Inc., which assisted the New Mexico Medicaid division to seek and receive legislative approval and funding for inclusion of the optional coverage for both consumer-directed personal care and for the category of working disabled individuals in the Medicaid program.

Thomas Nerney
Director, Center for Self-Determination, 35425 Michigan Avenue West, Wayne, MN 48184
Tel: 734-722-6262, Fax: 734-467-7639, E-mail: tomnerney@earthlink.net
Affiliation: Director (2000 Article)
Thomas Nerney directs the Center for Self-Determination which includes self advocates, family members, and professionals from around the country who have acquired extensive experience in self-determination from design to implementation. He served as Co-Director of the Robert Wood Johnson Foundation's National Program Office on Self-Determination, and directed RWJ's first pilot on Self-Determination in New Hampshire. Mr. Nerney articulated the theory and implications of self-determination in a series of monographs and papers beginning a decade ago. The Center's work today concentrates on second generation issues in self-determination including pervasive poverty and lack of freedom for individuals with disabilities.

Darlene (Dee) O'Connor, PhD
National Project Director, HCBS Resource Network, Boston College Graduate School of Social Work, Room 401, McGuinn Hall, Chestnut Hill, MA 02467
Tel: 508-867-8884, Fax: 508-867-8885, E-mail: darlene.oconnor@bc.edu
Affiliation: Policy Analyst
Dee O'Connor is Associate Research Professor and National Project Director for the Home and Community-Based Services Resource Network, a collaborative project of ASPE and HCFA (now CMS), administered by the MEDSTAT Group and Boston College. She was previously Director of Health and Long-Term Care Policy for the Connecticut Department of Social Services where she led the state's Olmstead planning efforts.

Nancy Olson
Project Coordinator, Respite Care Association of Wisconsin, 4614 Fuller Street, Schofield, WI 54476
Tel: 877-266-9207, Fax: 715-355-1522, E-mail: nolsonrn@aol.com
Affiliation: Consumer, Consumer Advocate
Nancy Olson is the Project Coordinator for the Respite Care Association of Wisconsin, and also a Registered Nurse and mother of two children with special needs. It was her family's need for community-based services that got her involved in the area of disability services and the unmet needs of other families that keep her involved. Ms. Olson's recent efforts involved working through the maze of interests that coalesced in a statewide respite initiative. Her work involved collaborations with grassroot folks all the way up to the interface with state legislators. After more than two years of concentrated effort, advocacy, education and coalition building, Wisconsin passed its first lifespan respite legislation. Ms. Olson is a member of numerous committees that are addressing ways to streamline and strengthen community-based services for individuals with disabilities and their families in Wisconsin. These committees include: the Children's Long Term Care Redesign Committee, the Legislative Council's Special Committee on Developmental Disabilities, the Survival Coalition, and the Lifespan Respite Care Taskforce. In January 2001, she was among those chosen to participate in the National Project Leadership class of 2001.

Ronald L.G. Osterhout
Executive Director, Personal Assistance Service Council, 4730 Woodman, Suite 405, Sherman Oaks, CA 91423
Tel: 818-206-7006, Fax: 818-206-8000, E-mail: rosterhout@pascla.org
Affiliation: Director, Public Authority
Ronald Osterhout was educated with a BA and MBA in finance/economics coupled with graduate studies in law. He has spent a career in the public and private sectors in the United States and internationally. Mr. Osterhout was Coordinator of Government Affairs for Texaco, served as an auditor for the U.S. Army in Thailand, directed a career management firm as Senior Vice President; held a senior accounting position in the insurance industry, served at the Board level of a major arts organization raising substantial funds and currently holds the position of Executive Director of the Public Authority in Los Angeles County. In that position, he directly oversees the enhancement of the IHSS program. Mr. Osterhout has traveled the world, worked with foreign governments, as well as organizations aiding the disabled.

Jim Parker
Advocacy Projects Coordinator, New Mexico Governor's Committee on Concerns of the Handicapped, Room 117, Lamy Building, 491 Old Santa Fe Trail, Santa Fe, NM 87501
Tel: 505-827-6465, Fax: 505-827-6328, E-mail: 103203.400@compuserve.com
Jim Parker is an advocate for long-term service expansion and improvement in New Mexico and nationally (NCIL PAS subcommittee). He worked to institute State Medicaid Option for Personal Care, which has strong consumer control and direction component; and worked to bring Medicaid "buy-in" for working disabled individual to New Mexico. Mr. Parker is currently working on the 1115 Waiver Committee to combine waiver (excluding developmental disabilities) and nursing home funds under one umbrella; also with a strong consumer control and direction component. Mr. Parker is a long-term ADAPT advocate for MiCASSA and accessible transportation, and a DRACH housing advocate. He worked for two independent living centers (Ability Center, Las Cruces, New Mexico; and Atlantis Community, Denver); City of El Paso, Texas; with 10 years as newspaper reporter/editor. He was a VISTA Volunteer for Coalition of Texans with Disabilities.

Trudy Persky
604 South Washington Square, Apt. #1602, Philadelphia, PA 29106
Tel: 215-592-8281, Fax: 215-592-6408, E-mail: TrudyPers@aol.com
Affiliation: Consumer Advocate
Trudy Persky has experience as a clinical social worker that spans four decades. In addition to founding a Mental Health-Aging Advocacy organization in Philadelphia, she has been a member of the Pennsylvania Mental Health Planning Council advocating for improved elderly mental health care. Currently, Ms. Persky is the co-facilitator of the Mental Health Consumer Council for a SAMHSA project based at the University of Pennsylvania and ten other sites in the nation. She is also Consumer Council Facilitator for the Philadelphia COMHAR Mental Health Council Hispanic Outreach Project. In 1995, Ms. Persky was a member of the White House Conference on Aging Pennsylvania Delegation.

Larry Polivka, PhD
Director, Florida Policy Exchange Center on Aging, USF 30437, 4202 East Fowler Avenue, Tampa, FL 33620-3043
Tel: 813-974-3468, Fax: 813-974-5788, E-mail: lpolivka@admin.usf.edu
Affiliation: Researcher
Larry Polivka has served as Director of the Florida Policy Exchange Center on Aging at the University of South Florida since September 1992. Prior to this, Dr. Polivka worked at the State of Florida's Health and Rehabilitative Services as Assistant Secretary for Aging and Adult Services from August 1989 through September 1992, and as Policy Coordinator for Health and Human Services, Office of Planning and Budget, Executive Office of the Governor from August 1986 through August 1989. The Policy Exchange Center conducts policy analysis and applied research projects designed to generate information for use by state and national policymakers. The major priorities of the Center are health care reform, long-term care, housing and legal/ethical issues. The Center publishes several reports annually, including the bi-annual publication Aging Research and Policy Report. Dr. Polivka is Co-Editor of the Journal of Aging and Identity and the author of several articles on humanities and aging.

Bobbie Quilleon
Florida Developmental Disabilities Consumer-Directed Care Project, 9437 Rockrose Drive, Tampa, FL 33647-2813
Tel: 813-973-0374, E-mail: bobbiequilleon@aol.com
Affiliation: Consumer Advocate
Bobbie Quilleon is the parent of five children, two of who are mentally retarded (Kenneth and Kendra Holden). She has been an advocate for people with mental retardation her entire adult life. A graduate of Texas Woman's University with a degree in English and journalism, Ms. Quilleon has used her writing and speaking skills to promote programs for the mentally retarded. Experiencing constant frustration with lack of med-waiver services, she is excited to participate in the experimental group. Freedom of choice enables her to enhance her children's social skills, build on their self-esteem, and seek programs that rekindle their learning abilities.

Tom Reimers
Project Director, Consumer-Directed Care Project, Florida Department of Elder Affairs, 4040 Esplanade Way, Room 280H, Tallahassee, FL 32399-7000
Tel: 850-414-2115, Fax: 850-414-2008, E-mail: reimerst@elderaffairs.org
Affiliation: RWJ Grantee
Tom Reimers is the Project Director for Florida's Consumer-Directed Care Project, one of the Robert Wood Johnson Foundation's Cash and Counseling research projects. He is employed by the Florida Department of Elder Affairs, Division of Statewide Community-Based Services. Prior to joining the Consumer-Directed Care Project, he was the Coordinator of the agency's Education, Wellness and Volunteers Initiatives. Mr. Reimers has more than 19 years of management experience in state and city government and the private sector. He was previously employed in the recreation management field for 14 years. Born in New York and raised in North Carolina, Mr. Reimers earned a B.A. in Business Management from North Carolina State University in 1981.

Susan Reinhard, PhD
Co-Director, Center for State Health Policy, Rutgers University, 317 George Street, Suite 400, New Brunswick, NJ 08901-2008
Tel: 732-932-3105 x230, Fax: 732-932-0069, E-mail: Sreinhard@cshp.rutgers.edu
Affiliation: Researcher, Policy
Dr. Susan Reinhard is the Co-Director of Health Policy at Rutgers University's Center for State Health Policy. She is also the Executive Director of the Center for Medicare Education in Washington, D.C. Dr. Reinhard investigates and disseminates innovative practices in long-term care, consumer education, workforce, and other critical areas will affect the future of long-term care services. Prior to these appointments, Dr. Reinhard was the Deputy Commissioner of the New Jersey Department of Health and Senior Services, where she supervised quality oversight of long-term care, developed the Community Choice Counseling Program to help people transition from a nursing home to other long-term care options, and secured significant funding to initiate more home care for older adults and people with disabilities. Her background includes clinical care, education, research, policy development, and governmental relations. She holds a Master's degree in Nursing from the University of Cincinnati, and a Ph.D. in Sociology from Rutgers University.

Judith Riggs
Deputy to the Vice President for Policy, Alzheimer's Association, 1319 F Street, N.W., Suite 710, Washington, DC 20004
Tel: 202-393-7737, Fax: 202-393-2109, E-mail: judith.riggs@alz.org
Affiliation: Consumer Advocate
Judith Riggs co-manages the Public Policy Office of the Alzheimer's Association in Washington, D.C., and directs initiatives designed to improve access to and quality of health and long-term care for people with dementia. Since 1988, the Association has been a lead organization in broad-based coalitions to improve financing and delivery of long-term care: first the Long Term Care Campaign and now Citizens for Long Term Care. She is author of numerous articles and publications on Alzheimer's and long-term care, including "The health and long-term care policy challenges of Alzheimer's disease," forthcoming in Aging and Mental Health (2001) 5 (Supplement 1).

David Robar
Public Information Coordinator, Granite State Independent Living, 21 Chenell Drive, P.O. Box 7268, Concord, NH 03302-7268
Tel: 603-228-9680, Fax: 603-225-3304, E-mail: david.robar@gsil.org
Affiliation: Consumer, Consumer Advocate, Direct Care Provider
David Robar is the Public Information Coordinator at Granite State Independent Living (GSIL), New Hampshire's only consumer run, consumer controlled, community-based, cross disability independent living center. GSIL has administered a Personal Care Attendant Program for people with physical disabilities in New Hampshire since 1980. He became a consumer of disabilities services in 1990 when he sustained a spinal cord injury. Since then he has become a strong advocate on disability issues. Most recently he has been involved with the implementation of the Ticket to Work, Work Incentives Improvement Act.

Lisa Rotegard
Supervisor of Community Supports for Seniors, Minnesota Department of Human Services, 444 Lafayette Road, St. Paul, MN 55155-3844
Tel: 651-297-3829, Fax: 651-296-9797, E-mail: lisa.rotegard@state.mn.us
Affiliation: Funder, Developer, Regulator
Lisa Rotegard currently supervises the Community Supports for Seniors unit within the Aging Initiative. This unit oversees policy development and implementation related to delivery and purchase of the home and community-based services programs including the Elderly Waiver, Alternative Care and Pre-Admission Screening and Consultation. Previous to her employment with the State of Minnesota, Ms. Rotegard served as a research scientist and consultant for the Center for Community Services at the University of Minnesota.

Helen Coburn Roth
Executive Director, OPTIONS for Independence, 1095 North Main, Logan, UT 84341
Tel: 435-753-5353, Fax: 435-753-5390, E-mail: hroth@optionsind.org
Affiliation: Consumer Advocate
Helen Roth is a new member of the Home and Community-Based Services Resource Network Board where she is representing older people who have aged with disabilities. She also serves on the Board of the American Association of People with Disabilities, was a long time officer and member of the National Council on Independent Living, and is the immediate past President of the Association for Independent Living of Utah. Over a lifetime of service she has participated in many other activist groups including the League of Women Voters. Ms. Roth has a Master's degree from the Pennsylvania State University and has done extensive graduate work at Harvard University. She is a strong advocate for disability rights, consumer control, and cross disability issues.

Maggie Scheie-Lurie
Consumer Outreach Coordinator, National Alliance for the Mentally Ill, 2107 Wilson Boulevard, Suite 300, Arlington, VA 22201
Tel: 703-516-7990, Fax: 703-524-7600, E-mail: maggie@nami.org
Affiliation: Consumer Advocate
Maggie Scheie-Lurie has worked for the National Alliance for the Mentally Ill (NAMI) for over 16 years, focusing on consumer empowerment programs. Currently, she provides technical assistance to NAMI's Consumer Council, its national network of consumer leaders. Coordinating its activities through the Executive Director's office, the Consumer Council promotes consumer involvement in NAMI policy initiatives, supports implementation of consumer education and support programs, and fosters consumer integration within local and state NAMI organizations. Ms. Scheie-Lurie has helped develop, manage, and provide training in NAMI consumer support and recovery education programs. She also managed NAMI's 800 Helpline for five years.

Claudia Schlosberg
Senior Civil Rights Analyst, HHS Office of Civil Rights, 200 Independence Avenue, S.W., Room 506F, Washington, DC 20201
Tel: 202-619-1750, Fax: 202-619-3818, E-mail: claudia.schlosberg@hhs.gov
Affiliation: Federal Government
Claudia Schlosberg is a senior civil rights analyst and policy advisor with the Office of Civil Rights (OCR). She is responsible for developing federal policy to promote, monitor and enforce compliance with federal civil rights laws that prohibit discrimination based on race, color, national origin and disability in health and welfare programs funded by HHS. She advises the director, provides technical assistance to regional staff and assists in the investigation and resolution of OCR complaints. Ms. Schlosberg has nearly 20 years of experience as an attorney and policy analyst in the fields of health and civil rights. Prior to working for OCR, Ms. Schlosberg staffed the Washington, D.C. Office of the National Health Law Program where she was responsible for promoting access to health care for low-income people through federal legislative and administrative advocacy, policy analysis, litigation, training and technical assistance. Ms. Schlosberg also has worked for the Bazelon Center for Mental Health Law and the American Association of Retired Persons, where her primary responsibilities involved monitoring and promoting the rights of adults and seniors with disabilities to quality health care in the most integrated setting and on investigating individual and systemic complaints regarding quality care in mental hospitals, nursing homes and non-institutional, community-based settings. She has written extensively on health care rights, provided expert consultation to public and private entities, served as an expert witness and court monitor, conducted trainings nationwide on health care and quality and has taught health law and advocacy at the Columbus School of Law of the Catholic University of America. She received her law degree from Antioch School of Law in 1981, and graduated from Union College with a B.A. in History in 1976.

Jennifer Schore
Deputy Project Director, Cash and Counseling Evaluation, Mathematica Policy Research, Inc., P.O. Box 2393, Princeton, NJ 08543
Tel: 609-275-2380, Fax: 609-799-0005, E-mail: jschore@mathematica-mpr.com
Affiliation: Researcher (Presentation) (2000 Report)
Jennifer Schore (M.S., M.S.W.) began her career as a health policy analyst on the Evaluation of the National Long-Term Care Channeling Demonstration, and has been with Mathematica since 1974. Her special interests are delivery systems for home and community-based services for elderly people and people with disabilities, and care coordination for people with chronic illnesses. Ms. Schore is currently Deputy Project Director for the Evaluation of the Cash and Counseling Demonstration, and Co-Principal Investigator for HCFA's Evaluation of Programs of Coordinated Care and Disease Management.

Karl Schwarzkopf, PhD
Deputy Director for Community Services, Division of Mental Health, Mental Retardation and Substance Abuse, Georgia Department of Human Resources, 2 Peachtree Street, N.W., Suite 22-108, Atlanta, GA 30303-3142
Tel: 404-463-8929, Fax: 404-657-1137, E-mail: khschwarzkopf@dhr.state.ga.us
Affiliation: State Agency Staff
Karl Schwarzkopf has a Ph.D. in psychology and is experienced in the areas of disability, aging, and long-term care as a direct service provider, educator, and planner. He has developed and managed programs in almost all areas of health care and human services, including both public and private sector organizations. The main focus of Dr. Schwarzkopf's activities was on increasing community options for individuals in need of support.

Mark Sciegaj
Assistant Professor, Heller School, Brandeis University, Mail Stop 035, 415 South Street, Waltham, MA 02454-9110
Tel: 781-736-3935, Fax: 781-736-3864, E-mail: sciegaj@brandeis.edu
Affiliation: Researcher (Presentation)
Mark Sciegaj is Chairperson of the Heller Graduate School Concentration in Aging and Disability. He is also on the senior staff of both the Schneider Institute for Health and the Starr Center for Mental Retardation. He was the Principal Investigator of a research project, funded by the Robert Wood Johnson Foundation that examined racial/ethnic differences in elder preferences for consumer-directed long-term care and has also examined these differences in elder judgments.

Linda Shandera
Long Term Care Services Coordination Program Manager, Nebraska Health and Human Services System, P.O. Box 95044, Lincoln, NE 68509-5044
Tel: 402-471-9462, Fax: 402-471-6352, E-mail: linda.shandera@hhss.state.ne.us
Linda Shandera is Manager of Nebraska's Services Coordination for Long Term Care System--Elderly, Adults and Children with Disabilities; Children with Special Health Care Needs; Early Intervention, HCBS Waiver. She was past Program Coordinator of HCBS Quality Improvement Process. Ms. Shandera is the Manager of HCBS, CSHCN and EI staff development (Co-Lead with Nebraska Department of Education). She has experience as a Child Protective Services and Adoption Supervisor.

Vicki Shepard
Vice President, Health Care Global Industry Group, EDS, 333 John Carlyle Street, Alexandria, VA 22314
Tel: 703-837-4840, Fax: 703-836-9762, E-mail: vicki.shepard@eds.com
Affiliation: Consumer Advocate, Care Provider
Vicki Shepard has extensive leadership in public and private sectors: presidential appointee at Health and Human Services. She ran state agencies for two California governors. Ms. Shepard's expertise spans health care delivery. social services, aging and long-term care. She maintains close relationship with MIT Age Lab, and is active in professional, volunteer and advocacy organizations. Ms. Shepard also spent ten years as a primary caregiver.

Lori Simon-Rusinowitz, MPH, PhD
Deputy Project Director, Cash and Counseling Demonstration and Evaluation, University of Maryland Center on Aging, 2360 HHP Building, College Park, MD 20742
Tel: 301-405-2548, E-mail: ls119@umail.umd.edu (Presentation) (2000 Article) (2000 Article)
Lori Simon-Rusinowitz is a faculty member in the University of Maryland Department of Public and Community Health and Deputy Director of the Cash and Counseling Demonstration and Evaluation Project in the Center on Aging. Her research focus has been in the field of aging and disability policy issues for the past 14 years. As part of the Cash and Counseling Project, she has overseen a study of consumers' preferences for consumer-directed personal care. She has also conducted research concerning older worker issues. She has published extensively in both areas. Prior to joining the University of Maryland in1992, Dr. Simon-Rusinowitz held positions at the George Washington University National Health Policy Forum and The Gerontological Society of America. Dr. Simon-Rusinowitz earned a PhD in Health Policy at the University of Illinois at Chicago and an MPH from the University of Michigan.

Rhonda Sloan
Representative, Florida Developmental Disabilities Consumer-Directed Care Project, 503 West Idlewild Avenue, Tampa, FL 33604
Tel: 803-237-3034, Fax: 813-237-8514, E-mail: sloans_2000@yahoo.com
Affiliation: Parent/Consumer Advocate
Rhonda Sloan, mother of Tanya Dickens, is a participant in the Consumer-Directed Care Project in Florida. This consumer driven project enables her to have complete control of her daughter's budget and services rendered. An advocate for all people with disabilities, Ms. Sloan has served on the Family Care Council and is on the Board of Directors for the Hillsborough Association for Retarded Citizens. Additionally, she is an Independent Information Coordinator contracted by the Department of Children and Families/Suncoast Region to present informational seminars on the Medicaid waiver in Florida to consumers and consumer families.

Marcia E. Smith
Chief Executive Officer, Evercare, 9900 Bren Road East, Minnetonka, MN 55343
Tel: 952-936-6847, Fax: 952-936-6902, E-mail: marcia_e_smith@uhc.com
Marcia Smith, CEO of Evercare, leads the strategic direction for this unique company that serves the needs of frail and vulnerable individuals in 16 states through contracts with HCFA (now CMS) and state Medicaid programs. Originally focused on providing enhanced medical care to frail elderly living in institutions, Evercare's recent acquisition of Lifemark Corporation created a comprehensive platform to serve the long-term care needs of individuals in community-based settings as well. Ms. Smith's broad-based managed care experience provides a firm foundation for her executive responsibilities at Evercare. Prior to Evercare, she led innovative strategies for evaluating the performance of health care delivery to improve service, cost and quality for United HealthCare's 20-plus owned and managed health plans. She also was instrumental in the introduction and application of the nation's first "Report Card," United HealthCare's tool for measuring health care delivery performance. She holds a B.S.N. from the University of Colorado and M.S.N. with emphasis on long-term care from George Mason University in Virginia.

Robert Sneirson
Systems Advocate, Boston Center for Independent Living, 95 Berkeley Street, Suite 206, Boston, MA 02116-6264
Tel: 617-338-6665, Fax: 617-338-6661, E-mail: RSneirson@aol.com
Affiliation: Consumer Advocate
Robert Sneirson received a B.A. in Political Science from Tufts University in 1989 and an M.A. in Political Science from Boston University in 1993. From 1991-1996, he served on the Massachusetts Developmental Disabilities Council in various positions including a two-year stint as Secretary of the Council. Currently, Mr. Sneirson is Systems Advocate for the Boston Center for Independent Living. He is also the Chairperson of the Disability Policy Consortium, a statewide cross-disability policy development organization, and is a member of the 2000 Project Leadership Class.

C. Edgar Spencer, MEd, MSW
Director, Division of Developmental Disabilities/Special Populations, South Carolina Department of Mental Health, P.O. Box 485, Columbia, SC 29202
Tel: 803-898-8579, Fax: 803-898-8347, E-mail: ces64@co.dmh.state.sc.us
Affiliation: Program Manager
Edgar Spencer holds a Master's degree in Education Administration from the University of South Carolina, and a Master's degree in Social Work from the Virginia Commonwealth University. As the Deputy Commissioner of Addictions, he interfaces facility and local center services with other state and federal systems, expands new services, evaluates ongoing ones, and relates to Probate Judges, 301 Commissions, SCCADA and area hospitals. From 1990 to now, Mr. Spencer has been directly responsible for South Carolina Department of Mental Health division for policy development, human and fiscal elements, programs, critical linkage and evaluation to local service system for the following areas: Hard of Hearing/Deaf; Developmental Disabilities; Community Pharmacy Consultation; Senior Services; Telepsychiatry System; Aiken and Berkeley Mental Health Centers; and Agency Disaster Response Network.

Marie R. Squillace, PhD
Senior Researcher, National Council on the Aging, Research and Demonstrations Division, 409 Third Street, S.W., Washington, DC 20024
Tel: 202-479-6639, Fax: 202-479-0735, E-mail: marie.squillace@ncoa.org
Affiliation: Researcher
Marie Squillace is a Senior Researcher for the National Council on the Aging (NCOA), and Adjunct Researcher for the University of Maryland, Center on Aging. Dr. Squillace is the Principal Investigator for NCOA on a joint NASUA/NCOA project entitled, Mainstreaming Consumer Direction in the Aging Network. This RWJF project begins the second phase of NCOA's and NASUA's efforts to transfer models of consumer-direction from the disability arena into the aging service system and extends prior activities under RWJF's Independent Choices Program. At the University of Maryland, she is currently involved in exploratory research to understand and gauge interest in approaches to consumer-direction in managed care (specifically, plans that provide long-term care benefits under capitation agreements with their state Medicaid agencies). Prior to coming to NCOA in 2000, Dr. Squillace held an academic appointment at the University of Maryland as a Faculty Research Associate. In this position, she was involved in a study of consumers' preferences for consumer-directed personal care to inform the Cash and Counseling Demonstration and Evaluation funded by the Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services.

Tina Standing Soldier
P.O. Box 345, Wanblee, SD 57577
Affiliation: Consumer Advocate
Tina Standing Soldier is a graduate of Partners in Policymaking, and is currently participating in Project Leadership. She is a mother and a grandmother. Her son, Harlan, has multiple disabilities and lives out-of-the-home because of a lack of services in their home community. Ms. Standing Soldier was the recipient of a National Hero Award.

Glenn Stanton
Deputy Director, Disabled and Elderly Health Programs Group, CMS Center for Medicaid and State Operations, 7500 Security Boulevard, S2-14-27, Baltimore, MD 21244
Tel: 410-786-6768, Fax: 410-786-9004, E-mail: Gstanton@cms.hhs.gov
Glenn Stanton has 20 years of service within the public health care sector at the county, state and federal levels, much of that time devoted to assisting persons with disabilities. His experiences have included managing the direct provision of supports and services for persons with disabilities as well as policy development and oversight. In his current role, within HCFA (now CMS), he provides leadership and organizational management for issues related to Medicaid state plan and waiver services directed to older adults and persons with disabilities. Previously, he was the Director for the Bureau of Quality Management and Service Innovation, within the Michigan Department of Community Health. During that time, he was responsible for the development and dissemination of innovative service and support models for persons with disabilities, including consumer-directed services and the development of person-centered planning practice guidelines for persons with mental illness and developmental disabilities. He was also responsible for the quality management system for Michigan's Medicaid specialty services and supports waiver. Prior to joining the State of Michigan, Mr. Stanton served as the Executive Director of a three-county Community Mental Health Service Program in Michigan. This agency managed and provided direct services and supports to persons with mental illness, developmental disabilities or substance abuse conditions.

Susan Stoddard, PhD, FAICP
President, InfoUse, 2560 Ninth Street, #216, Berkeley, CA 94710
Tel: 510-549-6520, Fax: 510-549-6512, E-mail: sstoddard@infouse.com
Affiliation: Researcher/Evaluator
Susan Stoddard evaluated the Rehabilitation Services Administration's "Choice" program, examining the results of expanded consumer choice in vocational rehabilitation, as well as other disability and independent living programs. She has published a series of Chartbooks on Disability, including Work and Disability, and developed the Program Review process of the National Institute on Disability and Rehabilitation Research. Dr. Stoddard collaborated with the University of California at Los Angeles in ASPE's study of the client-directed model of Personal Assistance Services in California's IHSS program. InfoUse is currently developing interactive training for consumer-directed personal assistance services in the NIH SBIR program.

Michael K. Stracener, MSW, LCSW
Executive Director for Independent Choices, Aspen Management Group, LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205
Tel: 501-217-8123, Fax: 501-217-8125, E-mail: mikestracener@aol.com
Affiliation: Counseling Fiscal Agency
Michael Stracener has been a Masters level counselor, social worker, medical case manager and health care manager for 19 years, providing services in the areas of mental health, geriatrics, physical disability, brain trauma and physical rehabilitation. His management roles have included Neuro-Rehabilitation Program Manager, Regional Operations Director for a multi-state rehabilitation company and Founder/Operating Partner of Aspen Management Group, LLC. As Executive Director for the Aspen Management Group Consumer-Directed Services, he established in 1998 the Counseling and Fiscal Agency providing services to the clients of the Arkansas Department of Aging and Adults Services IndependentChoices program, and continues to oversee the operations of the Counseling/Fiscal Agency.

Michael J. Sturman
Program Director, Concepts of Independence, Inc., 120 Wall Street, Suite 1010, New York, NY 10005
Tel: 212-293-9999, Fax: 212-293-3040, E-mail: conceptscdpa@earthlink.net
Michael Sturman has been in the health care field for 30 years, the last 15 years directing programs in the home care industry. Mr. Sturman received his B.A. in Psychology from Brooklyn College, New York, and his M.A. in Counseling and Educational Psychology from the University of Mississippi. He also served as a Commissioned Officer in the U.S. Army. Mr. Sturman is well known in the field of home care as a dedicated and enthusiastic professional committed to advocating for individuals with disabilities, and has recently been appointed to the position of Director of Concepts of Independence, Inc.

Cathie Sullivan
Home Care Policy Analyst, Service Employees International Union, 1313 L Street, N.W., Washington, DC 20005
Tel: 202-898-3275, Fax: 202-898-3348, E-mail: sullivac@seiu.org
Cathie Sullivan is a Home Care Policy Analyst with the Health Care Division at Service Employees International Union (SEIU/AFL-CIO) in Washington, D.C. She is responsible for providing research support for the union and its 175,000 member home care workers. Previously, Ms. Sullivan was Research Director at the National Association for Home Care in Washington, D.C. where she focused on the Medicare home health benefit. Prior to that, she worked as a research analyst at the Brookings Institution with a focus on long-term care financing and delivery. Ms. Sullivan received a Master's degree in Public Administration from New York University in 1992.

Nancy R. Thaler
Deputy Secretary for Mental Retardation, Pennsylvania Department of Public Welfare, P.O. Box 2675, Harrisburg, PA 17105-2675
Tel: 717-787-3700, Fax: 717-787-6583, E-mail: nthaler@state.pa.us
Affiliation: State Administrator
Nancy Thaler has been Deputy Secretary for Mental Retardation in the Pennsylvania Department of Public Welfare since 1992. She served as the Director, Bureau of Community Programs for six years prior to being appointed Deputy Secretary. Before her career in state government, she worked for 16 years in a large non-profit agency in southeastern Pennsylvania, Ken-Crest Services. While with that agency, Ms. Thaler served eight years as a direct care worker, including four years as a house parent and another eight years in administrative positions. As Deputy Secretary for Mental Retardation, she is responsible for the state's services to people with mental retardation, including 1,800 people in state institutions, 75,000 people in the community, and a budget of $1,8 billion.

Jane Tilly
Senior Research Associate, The Urban Institute, 2100 M Street, N.W., Washington, DC 20037
Tel: 202-261-5651, Fax: 202-223-1149, E-mail: jtilly@ui.urban.org
Affiliation: Researcher (2000 Article)
Jane Tilly has 17 years experience in public policy analysis and research related to Medicaid and disability policy. At present, she is conducting research in four areas: (1) Medicaid's role in state home and community services, (2) end-of-life care, (3) pharmaceutical assistance programs, and (4) long-term care workers. She also recently completed research on consumer-directed home and community services at the national and international levels. Before joining the Urban Institute, Dr. Tilly was Associate Director for Long-Term Care Policy Research at AARP. Her work there involved directing a team that conducted research on public benefit programs serving older persons. Her research responsibilities at AARP included consumer-directed services and state long-term care systems.

Maggie Tinsman
Iowa State Senator, 3541 East Kimberly Road, Davenport, IA 52807
Tel: 563-359-3624, Fax: 563-359-6671, E-mail: mtinsma@legis.state.ia.us
Maggie Tinsman, first elected to the Senate in 1988, is the current Chair of the Health and Human Rights Appropriations Subcommittee. She is also the Vice Chair of the Senate Human Resources Committee. Senator Tinsman serves on several health-related boards including the American Lung Association Board of Directors and the Tobacco-Use Control Commission. She is a former commissioner of the Department of Elder Affairs. She has co-sponsored several pieces of legislation to help senior citizens, including helping to establish the Senior Living Trust Fund. Senator Tinsman has worked hard over the last 12 years to eliminate the State tax on Social Security Benefits. She also initiated the allocation of additional funds for heating bill assistance for low-income senior citizens. She has worked to establish housing alternatives for seniors including group-family homes and assisted living homes. Senator Tinsman earned her Bachelor's degree from the University of Colorado and a Master's in Social Work from the University of Iowa.

Karen Topper
Advisor, Green Mountain Self-Advocates, 73 Main Street, Suite 401, Montpelier, VT 05602
Tel: 802-229-2600, Fax: 802-223-2132, E-mail: vpsn@sover.net
Affiliation: Advocate
Karen Topper works as an advisor for Vermont's statewide self-advocacy network. She also supports a SABE board member. For years, Ms. Topper worked providing community services and supporting the inclusion of all students in regular education. She currently works as an advisory to self-advocates.

Jean Tuller
Special Programs Director, Disabled and Elderly Health Programs Group, CMS Center for Medicaid and State Operations, 7500 Security Boulevard, Mail Stop S2-14-26, Baltimore, MD 21244-1850
Tel: 410-786-6815, Fax: 410-786-9004, E-mail: jtuller@cms.hhs.gov
Affiliation: Federal Government
Jean Tuller is the Special Programs Director for the National Program Office on Self-Determination at the University of New Hampshire. She is based in the Center for Medicaid and State Operations at HCFA (now CMS). Her policy analysis responsibilities include self-determination and the impact of the American with Disabilities Act, especially as it has been interpreted in the Olmstead v. L.C. Supreme Court decision. Ms. Tuller previously served as Project Director for the Maryland Self-Determination Initiative, a broad-based systems change effort. She holds a Master's degree in Public Administration from the University of Massachusetts, and graduated from the Senior Executive Management Program of the Kennedy School of Government at Harvard University.

Theresa Turgeon
Director, Office of Geriatric Services, Maine Department of Mental Health, Mental Retardation and Substance Abuse Services, State House, Station #40, Augusta, ME 04333
Tel: 207-287-4245, Fax: 207-287-4268, E-mail: Theresa.Turgeon@state.me.us
Affiliation: State Agency
Theresa Turgeon served as an advocate for several disenfranchised individuals and groups for many years until four years ago, when she became the Director of the Office of Geriatric Services. When she first started, this office worked exclusively with issues related to older persons and mental health. In the past two years, it has expanded its focus to include older persons with disabilities and substance abuse issues.

John J. Tuskan, Jr., RN, MSN
Captain, U.S. Public Health Service, SAMHSA Center for Mental Health Services, 5600 Fishers Lane, Room 17C-05, Rockville, MD 20857
Tel: 301-443-1761, Fax: 301-433-7912, E-mail: jtuskan@samhsa.gov
Affiliation: Funder, Federal Project Officer
John Tuskan is a Senior Program Management Officer in the Center for Mental Health Services (CMHS). He provides mental health technical assistance and consultation to the Office of Refugee Resettlement, and coordinates CMHS planning and funding for faith-based and community organizations.

Sue Vaeth
Senior Care Manager, Maryland Department of Aging, 301 West Preston Street, Room 1007, Baltimore, MD 21201
Tel: 410-767-1108, Fax: 410-333-7943, E-mail: sjv@mail.ooa.state.md.us
Affiliation: Funder
Sue Vaeth manages the Senior Care Program, which provides case management and gapfilling services to frail elderly people. Gapfilling services include personal care, chore, transportation, medications, medical supplies, meals, emergency response systems and adult day care, as well as grants, so families can purchase services on their own.

Laura Van Tosh
Consultant, Van Tosh Consulting, 1533 West Falkland Lane, #336, Silver Spring, MD 20910
Tel: 301-585-9455, Fax: 301-585-9467, E-mail: Lauravt@aol.com
Affiliation: Consumer, Advocate
Laura Van Tosh is an independent consultant and provides expertise in mental health policy development, analysis, and services research to a variety of organizations, including: government agencies; public and private health care organizations; university and research institutions; and national advocacy organizations. Ms. Van Tosh is founder and coordinator of the Mental Health Policy Roundtable--an educational forum funded by the John T. and Catherine T. MacArthur Foundation. The Roundtable is a knowledge-transfer effort designed to exchange information between established leaders in mental health policy with the next cadre of policy leaders in the mental health field. She has a team-oriented work approach and brings her experience to the following areas: behavioral health systems planning and oversight; consumer rights and education; quality assurance; health care reform; and, data and information. She has written extensively on health and mental health care consumer issues such as consumer-operated services, homelessness, quality and accountability, and served as a contributor and peer reviewer on the U.S. Surgeon General's Report on Mental Health. Ms. Van Tosh has been an active member of the mental health community for 15 years and has held various director-level positions in direct service and mental health policy settings. She is involved in her local community and serves on the Maryland State Mental Health Planning Council, the advisory council of the Maryland Disability Law Center, and she is a member of NAMI and On Our Own of Montgomery County. Ms. Van Tosh is a member of the Public Policy Committee of the National Association of State Mental Health Planning and Advisory Councils. She serves a member of the Expert Panel for the National Institute of Mental Health Constituent Outreach and Education Program. Ms. Van Tosh served on the Advisory Panel to the Rosalynn Carter 16th Annual Symposium on Mental Health Policy (2000), and is a former member of the Mental Health Statistics Improvement Program Policy Group. Ms. Van Tosh was awarded the Consumer Advocate Award from the International Association of Psychosocial Rehabilitation Services in 1997 and in 1991, she served on the Federal Task Force on Homelessness and Mental Illness Advisory Committee which issues the report, Outcasts on Mainstreet.

Brenda Wamsley, MSW
Executive Director, Center for Aging and Healthcare in West Virginia, Inc., 517 Market Street, Dils Center, Parkersburg, WV 26101
Tel: 304-422-2853, Fax: 304-422-2856, E-mail: bwamsley@citynet.net
Affiliation: Researcher
Brenda Wamsley is Executive Director of a non-profit agency that specializes in conducting applied research on health and aging policy issues. She is Co-Principal Investigator for A Randomized Trial of Primary and Consumer-Directed Care for People with Chronic Illness, which examines the use of a consumer-directed monthly voucher to purchase in-home services for an impaired Medicare population. Ms. Wamsley is the Principal Investigator for a qualitative analysis entitled Medicare Vouchers for In-Home Care: A viable Policy Option? funded by the Retirement Research Foundation. Both studies are in progress. She is also a doctoral candidate at Case Western Reserve University.

Sherry Watson
Executive Director, San Juan Center for Independence, 504 North Main, Aztec, NM 87410
Tel: 505-334-5805, Fax: 505-334-5528, E-mail: sjci@fisi.net
Affiliation: Consumer Advocate, Consumer-Director Personal Care Option Provider
Sherry Watson is a native of Aztec, New Mexico, and is the Executive Director of San Juan Center for Independence (SJCI). She has worked in the independent living movement for more than 10 years, in outreach, resource and management positions. Ms. Watson has extensive hands-on experience as well, in teaching independent living and self-advocacy skills, and in peer counseling, training and group facilitation. She also served as President of the National Head Injury Association Survivors Council and has served on many board and advisory committees responsible for overseeing independent living and traumatic brain injury activities. Currently, she is President of the New Mexico Protection and Advocacy Board of Directors and Vice President fo the New Mexico Governors Committee on Concerns of the Handicapped Board of Directors. SJCI is the fiscal intermediary for the Medicaid Consumer-Directed Personal Care Option. Ms. Watson graduated from Fort Lewis College and is a survivor of a severe traumatic brain injury.

William F. West
Program Administrator, Consumer Directed Attendant Support Program, Colorado Department of Health Care Policy and Financing, 1575 Sherman, 5th Floor, Denver, CO 80203
Tel: 303-866-3358, Fax: 303-866-2573, E-mail: william.west@state.co.us
Affiliation: State Program Staff, Consumer
Bill West has worked with special populations since 1976, and he has a disability as well. Mr. West has worked in the areas of mental health, independent living, and state rehabilitation. He was a mediator with the Client Assistance Program; and he worked for the Colorado Assistive Technology Project for eight years. Mr. West has been the Administrator for the Consumer-Directed Attendant Support Program within the Colorado Department of Health Care Policy and Financing since 1998. He is also the coordinator for Olmstead planning for the Medicaid agency in Colorado.

Gene Whitten-Legé, LMSW-ACP
Administrator, In-Home Attendant Services, 1630 Elgin Street, Houston, TX 77004
Tel: 713-528-6499, Fax: 713-523-8592, E-mail: ihas@swbell.net
Affiliation: Direct Care Provider
Gene Whitten-Legé is an Administrator and Co-Founder of In-Home Attendant Services (IHAS), which is privately owned and operated by he and his wife, Pat Whitten-Legé. They founded the company in 1996. I-HAS state contracts and three HMOs fund personal assistance services and emergency client services for aged and disabled persons living at home. Mr. Whitten-Legé is a Master's level licensed professional social worker. Following graduation from the University of Texas Graduate School of Social Work, his career began as a child protective service case worker and various management roles with the Texas State Department of Human Services. He served as Executive Director of non-profit human service organizations where he achieved national accreditation. As Executive Director of Houston's Harris County Child Welfare, Mr. Whitten-Legé provided a decade of leadership in program and policy development, public funding, and multi-agency initiatives. He has practiced individual and family psychotherapy privately and with privately funded organizations. For more than another decade, he worked with various home health agencies to develop and implement new programs for aged and disabled persons. Active at the statewide level in the development of programs designed to place more control in the hands of the service recipients, Mr. Whitten-Legé testifies and advocates for social programs at legislative hearings. He is currently named to a committee charged with implementing recent Texas legislation that mandates client-managed services as a consumer option statewide across several state agencies. The committee is developing a prototype model for one of the Medicaid programs that can be customized by other Medicaid programs.

Pat Whitten-Legé, LMSW-AP
Administrator, In-Home Attendant Services, 1630 Elgin Street, Houston, TX 77004, Tel: 713-528-6499, Fax: 713-523-8592, E-mail: patwl@swbell.net
Affiliation: Direct Care Provider
Pat Whitten-Legé is an Administrator and Co-Founder of In-Home Attendant Services (IHAS), which is privately owned and operated by her and her husband, Gene Whitten-Legé. They founded the company in 1996. I-HAS state contracts and three HMOs fund personal assistance services and emergency client services for aged and disabled persons living at home. Ms. Whitten-Legé is a Master's level licensed professional social worker. Following graduation from the University of Texas Graduate School of Social Work, her career began as a child protective service case worker and various management roles with the Texas State Department of Human Services. She served as Executive Director of non-profit human service organizations where she achieved national accreditation. As Executive Director of Crisis Intervention of Houston, a United Way agency, Ms. Whitten-Legé worked extensively with community volunteers and with private and corporate philanthropy. Ms. Whitten-Legé is also experienced in the management of state and federal contracts in the greater Houston area.

Bob Williams
Policy Advisor, United Cerebral Palsy Associations, 1601 North Springwood Drive, Silver Spring, MD 20910
Tel: 202-973-7113, E-mail: bwilliams@ucp.org
Bob Williams served as the Commissioner of the Administration on Developmental Disabilities and then as the Deputy Assistant Secretary for Disability, Aging and Long-Term Care Policy in the U.S. Department of Health and Human Services from 1993-2001. Prior to this, he worked for United Cerebral Palsy Associations (UCPA) on the passage of the Americans with Disabilities Act and the development of personal assistance policy. He also served as the Deputy Director of the Pratt Monitoring Office, which oversaw the closing of Forest Haven. In the spring of 2001, he rejoined the Government Activities Office of UCPA, and also currently serves as the Project Coordinator for the National Council on Disability's Study on the Implementation of the Constitutional Rights of Institutionalized Persons Act.

Kristen Parker Wills
Research Associate, Scripps Gerontology Center, Miami University, 396 Upham Hall, Oxford, OH 45056-1879
Tel: 513-529-2914, Fax: 513-529-1476, E-mail: parkerkc@muohio.edu
Affiliation: Researcher
Kristen Parker Wills is a Research Associate at the Scripps Gerontology Center, where she is involved in several projects involving consumer voice and choice in long-term care. Her long-term care research focuses on the role of the case manager in consumer-directive initiatives in community-based long-term care program; consumer-direction implementation strategies; and training issues. Ms. Wills is currently the content coordinator for an upcoming regional conference sponsored by Scripps Gerontology Center that will feature presentations on consumer education initiatives, consumer satisfaction measures, and evaluations of consumer-directed demonstrations around the nation.

Grace K. Wilson-Laudun
CDPCS Program Director, Access Alaska, Inc., Independent Living Center, 3901 Taft Street, Suites A&B, Anchorage, AK 99517
Tel: 907-248-4777, Fax: 907-248-0639, E-mail: amazing@pobox.alaska.net
Grace Wilson-Laudum received a Bachelor of Social Work degree from the University of Alaska in 1999, and has worked as an Independent Living Specialist and certified Care Coordinator with Access Alaska, Inc. She is currently collaborating with advocates from across the state to develop Alaska's first Consumer-Directed Personal Care Services program. This effort involves the Division of Medical Assistance, the Division of Senior Services, the State Independent Living Council, consumers, personal care assistants, and the Independent Living Centers statewide.

Greg Wintle
Project Director, Kansas Division of Health Care Policy, 5th Floor North, Docking Building, 915 S.W. Harrison, Topeka, KS 66612-0557
Tel: 785-296-3561, Fax: 785-296-0557, E-mail: WGW@srskansas.org
Greg Wintle has assisted Kansans with developmental disabilities in a variety of capacities over the past 16 years. For the past six years, he was the Co-Executive Director of an agency that assists consumers and their families who self-direct their supports. In February 2001, he returned to the State of Kansas as the State Director of the Kansas Self-Determination Project.

Buddy Wise, BSN, RN
Program Administrator/Chief Operations Officer, Independent Choices, Aspen Management Group, LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205
Tel: 501-217-8123, Fax: 501-217-8125, E-mail: e-buddwayne@aol.com
Affiliation: Counseling/Fiscal Agency
Buddy Wise received a Bachelor of Science in Nursing in 1996 from the University of Central Arkansas and since then has provided Registered Nursing services in emergency, critical care, consulting, and management settings. In his role as Program Manager for the Certified Nurse Assistant Training Division of Aspen Management Group, Mr. Wise was responsible for all aspects of operation including the design and implementation of training curriculum meeting state and federal guidelines for personal care services, phlebotomy services and certified nursing assisting. In his current role of Program Administrator/Chief Operations Officer, Mr. Wise manages all activities of the Independent Choices consumer-direction program of Aspen Management Group.

John Wren
Director, Office of Program Development, Administration on Aging, 330 Independence Avenue, S.W., Washington, DC 20201
Tel: 202-260-1702, Fax: 202-260-1019, E-mail: john.wren@aoa.gov
John Wren currently oversees the Administration on Aging's (AoA) discretionary grants program and its interagency policy agenda on home and community-based care. Prior to AoA, Mr. Wren was Vice President of the National Council on the Aging, and directed the National Aging Program at the Pew Charitable Trusts. He also worked for the New York State Office for the Aging as the Deputy for Policy and Program Development. He has an M.P.A. from the Maxwell School at Syracuse University, and received advanced training at Harvard University's Kennedy School of Government.

Barbara York, LPN
Senior Field Counselor, Independent Choices, Aspen Management Group, LLC, 8500 West Markham, Suite 200, Little Rock, AR 72205
Tel: 501-217-8123, Fax: 501-217-8125, E-mail: e-aspenrehab@earthlink.net
Affiliation: Consumer-Direction Counselor
Barb York has been a Licensed Practical Nurse for 7 years, providing nursing services in the hospital, nursing home and physician office setting. In 1998, Ms. York became one of the first nursing professional in the State of Arkansas to provide counseling and training services to individuals participating the Arkansas consumer-direction program: Independent Choices. As a Field Counselor for Aspen Management Group, the Counseling/Fiscal Agency for consumer-direction services in Arkansas, Ms. York assisted in the development of training materials and service systems to assist program participants in achieving self-direction of personal care services. Currently, she serves as the Senior Field Counselor for Aspen Management Group. In this role, Ms. York trains and supervises the Aspen Field Counselor staff, and monitors the quality of field services provided.

Muriel Zgardowski
President, Concepts of Independence, Inc., 120 Wall Street, Suite 1010, New York, NY 10005
Tel: 212-293-9999, Fax: 212-293-3040, E-mail: murielw23@aol.com
Affiliation: Consumer Advocate
Muriel Zgardowski is a retired commercial artist who ambulates by motorized wheelchair and is on life support owing to the fact that she has muscular dystrophy. She has been an advocate for disability rights for more than 30 years, and she is one of the founders of Concepts of Independent.

WASHINGTON AREA INFORMATION

Restaurant Guide

AMERICAN

America Restaurant, 50 Massachusetts Avenue, N.E., Washington, DC 20002, 202-682-9555
HOURS: 11:30am-11:30pm, Sun-Thurs; 11:30am-12:30am, Fri-Sat
ACCESSIBILITY: Handicap Accessible Downstairs
DINNER ENTREES: $8 to $20
LOCATION: Located inside Union Station

Armand's Chicago Pizzeria, 226 Massachusetts Avenue, N.E., Washington, DC 20002, 202-547-6600
HOURS: 11:30am-11:00pm
ACCESSIBILITY: Handicap Accessible Downstairs
DINNER ENTREES: $8 to $15
LOCATION: Closest Metro Stop is Union Station

Capitol City Brewing Company, 2 Massachusetts Avenue, N.E., Washington, DC, 202-842-2337
HOURS: 4:30pm-11:00pm, Sun-Thurs; 4:30pm-12:00am, Fri-Sat
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $11 to $23
LOCATION: Located right across the street from Union Station

Old Ebbitt Grill, 675 15th Street, N.W., Washington, DC 20005, 202-347-4800
HOURS: 7:30am-1:00am, Mon-Fri; 8:00am-1:00am, Sat; 9:30am-1:00am, Sun
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $10 to $25
LOCATION: Closest Metro Stop is Metro Center

The Occidental Grill, 1475 Pennsylvania Avenue, N.W., Washington, DC 20004, 202-783-1475
HOURS: 4:30pm-10:30, Mon-Thurs; 4:30pm-11:00, Fri-Sat; 4:00pm-9:30pm, Sun
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $18 to $33
LOCATION: Closest Metro Stop is Metro Center

Two Quail, 320 Massachusetts Avenue, N.E., Washington, DC 20004, 202-347-4499
HOURS: 5:30pm-10:00pm, Sun-Thurs; 5:30pm-11:00pm, Fri-Sat
ACCESSIBILITY: Not Handicap Accessible
DINNER ENTREES: $15 to $24
LOCATION: Closest Metro Stop is Union Station

GERMAN

Cafe Berlin, 322 Massachusetts Avenue, N.E., Washington, DC 20002, 202-543-7656
HOURS: 11:00am-10:00pm, Mon-Fri; 12:00pm-11:00pm, Sat; 4:00pm-10:00pm, Sun
ACCESSIBILITY: Only the Patio is Handicap Accessible
DINNER ENTREES: $41 to $75
LOCATION: Closest Metro Stop is Union Station

FRENCH

Gerard's Place, 915 15th Street, N.W., Washington, DC 20005, 202-737-4445
HOURS: 5:30pm-9:00pm, Mon-Thurs; 5:30pm-10:00pm, Fri-Sat, Closed Sunday
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $30 to $50
LOCATION: Closest Metro Stop is MacPherson Square

La Colline, 400 North Capitol Street, N.W., Washington, DC 20001, 202-737-0400
HOURS: 6:00pm-10:00pm, Mon-Sat; Closed on Sunday
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $76 to $140
LOCATION: Closest Metro Stop is Union Station

ITALIAN

Galileo, 1110 21st Street, N.W., Washington, DC 20036, 202-293-7191
HOURS: 5:30pm-10:00pm, Sun-Thurs; 5:30pm-10:30pm, Fri-Sat
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $20 to $32
LOCATION: 3½ blocks from Foggy Bottom/Farragut North Metro Stop

I Ricchi, 1220 19th Street, N.W., Washington, DC 20036, 202-835-0459
HOURS: 5:30pm-10:30pm, Mon-Sat; Close Sunday
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $76 to $140
LOCATION: Closest Metro Stop is Dupont Circle

MEXICAN

La Lomita, 1330 Pennsylvania Avenue, S.E., Washington, DC 20003, 202-546-3109
HOURS: 5:00-10:30pm, Mon-Fri; 5:00pm-11:00pm, Sat; 5:00pm-10:00pm Sun
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $10 to $15
LOCATION: Closest Metro Stop is Potomac Avenue

TAPAS

Jaleo, 480 7th Street, N.W., Washington, DC 20004, 202-628-7949
HOURS: 11:30am-10:00pm, Sun-Thurs; 11:30am-12:00am, Fri-Sat
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $10 to $20
LOCATION: Closest Metro Stop is Gallery Place

INDIAN

White Tiger, 301 Massachusetts Avenue, N.E., Washington, DC 20002, 202-546-5900
HOURS: 5:30pm-10:00pm, Sun-Sat
ACCESSIBILITY: Not Handicap Accessible
DINNER ENTREES: $11 to $15
LOCATION: Closest Metro Stop is Union Station

HOTEL DINING

Bis - Hotel George, 15 E Street, N.W., Washington, DC 20001, 202-347-4200
HOURS: 5:30pm-10:30pm
ACCESSIBILITY: Handicap Accessible through the Hotel
DINNER ENTREES: $18 to $25
LOCATION: 1½ Blocks from Union Station Metro Stop

SEAFOOD

McCormick & Schmicks, 1652 K Street, N.W., Washington, DC, 202-861-2233
HOURS: 3:30pm-12:00am, Sun-Sat
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $12 to $25
LOCATION: Closest Metro Stops are Farragut West and Farragut North

SOUTHERN

Georgia Brown's, 950 15th Street, N.W., Washington, DC 20005, 202-393-4499
HOURS: 5:30pm-10:30pm, Sun-Thurs; 5:30pm-11:30pm, Fri-Sat
ACCESSIBILITY: Handicap Accessible
DINNER ENTREES: $15 to $23
LOCATION: Closest Metro Stop is MacPherson Square

Washington, DC Welcomes Physically Challenged Travelers

Washington, D.C. Convention and Visitors Association
1212 New York Avenue, N.W., Suite 600, Washington, DC 20005-3992, 202-789-7000, Fax 202-789-7037

For the physically challenged travelers, Washington, DC is one of the most accessible and welcoming cities in the world. Nearly every museum, hotel, restaurant, shopping mall and public transit system can accommodate travelers with special needs, whether it be wheelchair ramps, menus in braille, telephone numbers for the hearing-impaired or large print brochures.

The following information outlines how physically disabled visitors can make the most of their visit to the "capital city!"

WASHINGTON'S ATTRACTIONS

Some of Washington's more traditional attractions, such as the Lincoln and Jefferson Memorials, have always been equipped to accommodate physically disabled visitors. Both are outfitted with special handicapped parking facilities and elevators to the interior chambers of the memorials. The staff at the Washington Monument keeps a wheelchair on the premises and allows physically disabled visitors a "right of way" policy to bypass waiting lines. In addition, wheelchair patrons may obtain a hand-held periscope to experience the view from the monument.

The National Capital Park Service, which operates all three monuments as well as a host of other national treasures in the Washington area, has made an effort to make its properties accessible to all visitors. For instance, large print information brochures and sign language interpreters are available at certain park sites. For complete information on special services for physically disabled visitors at sites operated by the National Capital Park service call (202)619-7222 or (202)619-7083 (TDD).

The White House, another favorite destination for visitors, is accessible to the physically disabled. A special entrance on Pennsylvania Avenue is reserved for visitors arriving in wheelchairs, and no admission ticket is required. White House tour guides may allow blind visitors to touch some of the articles and furnishings during the tour. For more information, call (202)456-2200 or (202)456-6213 (TDD).

MUSEUMS

The Smithsonian Institution, a magnificent assembly of 15 distinctive museums, (ten of which line the National Mall) also caters to the thousands of disabled travelers who come through their doors. All museum buildings are accessible to wheelchair visitors. With at least two weeks advance request, members of the Smithsonian staff may serve as sign language interpreters or "touch tour" leaders. The Smithsonian also publishes large print, braille and cassette materials for several of its museums. Its monthly calendar of events, which includes information from all its museums, is published in the Friday Washington Post and is made available on audio cassette tape.

"Smithsonian Access," a free publication explaining special resources for disabled visitors, is available in large print, braille, audio cassette and from America OnLine (keyword: Smithsonian). For copies, write Smithsonian Information, SI 153 MRC 010, Washington, DC 20560, or call (202)357-2700 (voice) or (202)357-1729 (TTY).

SHOPPING IN THE CAPITAL

The newer sights, which have given the city a more modern, cosmopolitan atmosphere, also welcome disabled visitors. A beautiful gallery of boutiques and restaurants, The Shops at National Place, is equipped with a wheelchair ramp at one of its entrances, as well as elevators and escalators to accommodate people of limited mobility. Wheelchairs may be obtained at any of the gallery's security offices on each floor as long as you call ahead, (202)662-1250. The Pavilion at the Old Post Office, a colorful collection of eateries, cafes and gift shops, is also equipped with a wheelchair ramp and internal elevators, as is Georgetown Park, an expansive luxury mall in the heart of Georgetown. Union Station is fully accessible, including all AMTRAK facilities.

THEATRES

Many of the larger theatres in town have installed special listening systems for the hearing impaired theatre buff. The John F. Kennedy Center for the Performing Arts installed infrared listening systems in three of its six main theatres. A hearing impaired patron may simply borrow a set of headphones before the performances, sit anywhere in the house, adjust the volume and enjoy. The Kennedy Center provides for its blind patrons by writing and recording special scripts and detailed descriptions of sets and costumes in some shows performed in the Opera House, Eisenhower and Terrace Theatres. "Touch tours" of the Kennedy Center can be arranged for visually-impaired patrons and sign language interpreters can accompany hearing-impaired visitors on their tours. All the theatres within the Center are accessible for patrons arriving in wheelchairs. For further information, call (202)467-4600.

The National Theatre, in the heart of downtown Washington, also provides for its disabled patrons. Once a month, the main house performance is narrated for visually impaired theatre-goers. The National Theatre is the only theatre in the country maintaining a permanent booth near the mezzanine staff by a narrator who describes the show scene-by-scene. To obtain earphones for the narration, or to secure infrared headsets for hearing-impaired patrons, simply see an usher before the performances. The National Theatre also offers a limited number of half-priced tickets for disabled patrons on Tuesday and Wednesday evenings, and for Sunday matinees. For further information, call (202)628-6161.

GETTING AROUND TOWN

As a disabled traveler, the question of how to get around town once you've arrived can be a difficult one. In Washington, the answer is easy--ride Metrorail, Washington's subway system.

The Metrorail system is a comprehensive, modern railway line built above and beneath the city. Each metro station is equipped with an elevator (complete with braille number plates) to reach train platforms. To aid visually-impaired travelors, the driver makes station and on-board announcements of train destinations and stops. And, as an extra measure of safety for hearing-impaired travelers, the Metrorail system warns of an approaching train by pulsating lights along the edge of the platform.

In addition to stations with elevators and trains with wide aisles to accommodate wheelchairs, the Metrorail system offer reduced fares and priority seating. And don't forget the Metrobus system! Certain Metro buses are equipped with state-of-the-art wheelchair lifts. For a free guide that provides information on Metro's bus and rail system for the physically disabled, as well as the elderly (202)635-6434.

For a special tour of Washington and other nearby sites, including Arlington Cemetery and Mt. Vernon, disabled sightseers may ride aboard a Tourmobile Sightseeing tram. Regular Tourmobile trams are easily accessible to the physically impaired tourists, and narrators provide a documentary of each sight. Tourmobile also operates a special air-conditioned van for immobile travelers, complete with a wheelchair lift. Reservations for the van must be made at least 24 hours in advance. For more information, call (202)554-7020.

USEFUL RESOURCES FOR VISUALLY-IMPAIRED TRAVELERS

Washington Ear, Inc., a non-profit organization for the blind, provides a Radio Reading Service for the blind. Patrons may hear newspapers, magazines and books being read, once a specialized radio is obtained from Washington Ear, Inc. (free of charge). Large print and tactile atlases of the Washington metro area and the state of Maryland with audio cassette commentary can be purchased from Washington Ear. These maps outline major streets and highways, building, bodies of water, the DC metro system, and include an extensive index. For more information on the guidebook or the atlases, call (301)681-6636.

Free transportable tactile maps of the Washington Metro system can be obtained from Columbia Lighthouse for the Blind, a non-profit organization, by calling (202)462-2900.

COMPANIES THAT TRANSCRIBE INFORMATION INTO BRAILLE

Columbia Lighthouse for the Blind
202-462-2900 x3005
Contact: Robin Draper

Good Resource for Information:
National Library Service for the Blind & Physically Handicapped
202-707-5100

COMPANIES THAT HAVE INTERPRETERS FOR THE HEARING IMPAIRED

Sign Language Associates
301-946-9710
Contact: Kamille Gillies

Good Resource for Information:
National Information Center on Deafness
202-651-5505

Centralized Interpreter Referral Service
410-243-3800

Partners In Sign
202-638-5630

Bimbaum Interpreting Service
301-587-8885

WHEELCHAIR/SCOOTER RENTAL

Area Access
703-573-2111

Wheaton Party Rental (no scooters)
301-937-7600

Convalescent Aids, Inc.
202-363-9242

Grubbs' Care Pharmacy
202-543-4400

Health Care Concepts (no scooters)
301-568-0600 or 703-750-0914

LNN Oxygen (no scooters)
301-868-8079 or 800-445-1116

New Hampshire Pharmacy & Medical Equipment (no scooters)
202-726-3100

TRANSPORTATION SERVICES FOR THE DISABLED

AA&N Transportation
301-588-6055

Red Top Cab
703-522-3333

Battle's Transportation Inc.
202-462-8658

Safe Transportation
301-445-6168

Elrod Transportation Service
202-829-6721

Ironsides
301-585-1100

Handi Ryde Inc.
703-971-8122

Wheelchair Mobile Transport, Inc.
301-294-0600

PRESENTATIONS

Cash and Counseling: Consumers' Early Experience In Arkansas and New Jersey

Leslie Foster, Randall Brown, Barbara Carlson, Barbara Phillips and Jennifer Schore
Mathematica Policy Research, Inc.

Broad Questions Addressed by Evaluation

Effects of C&C on consumers and their caregivers?
Effects of C&C on public spending?
Who participates in C&C?
How was C&C implemented?

Outcomes for Consumers and Caregivers

Consumers
- Personal assistance services (PAS) used
- Unmet needs and satisfaction with PAS
- Life quality
- Functioning and health
Caregivers
- Assistance they provide
- Well-being

Evaluation Methodology: Random Assignment

Interested consumers sign consent form
Consumers complete baseline telephone survey
MPR randomly assigns consumers to either
1. C&C (treatment group), OR
2. traditional Medicaid PAS (control group)
Regression-adjusted comparisons of outcomes for treatment and control groups provide estimates of C&C effects

ENROLLMENT TARGETS
	AR	NJ	FL	Total
Elderly Adults (age 65+)	1,000	1,000	1,000	3,000
Non-Elderly Adults (age 18-64)	1,000	1,000	1,000	3,000
Children (age <18)	---	---	1,000	1,000
Total	2,000	2,000	3,000	7,000
Totals include treatment and control group members.

Preliminary Descriptive Analysis

Early experience in Arkansas' Independent Choices and New Jersey's Personal Preference programs
- Uses of cash
- Caregivers hired and assistance received
- Satisfaction with program and assistance
Sample: Approximately 200 Early Treatment Group Members
Data: Follow-Up Surveys at 4 or 6 Months and at 9 Months with Early Cohort

ENROLLMENT STATUS
Status at 9 Months	Percent of Respondents
Status at 9 Months	Arkansas	New Jersey
Enrolled	67	76
Ever received cash benefit	65	49
Never received cash benefit	2	27
Disenrolled	33	24
Involuntarily	13	17
Voluntarily	20	7
Number of Respondents	194	240

REASONS FOR DISENROLLING
Reason	Number of Respondents
Reason	Arkansas	New Jersey
Involuntary Disenrollment	23	16
Deceased (died while enrolled)	6	8
Other Reason	17	8
Voluntary Disenrollment	41	22
Problem with Employer Responsibilities	18	8
Problem with Fiscal Responsibilities	8	7
Problem with Program in General or Changed Mind	21	8
Monthly Payment Too Small	12	3
Health and Family Problems	8	1
Disenrollees at 4 or 6 Months	64	38

USE OF PAID CAREGIVERS
Status at 9 Months	Percent of Respondents
Status at 9 Months	Arkansas	New Jersey
Had Paid Caregiver(s) in Last 2 Weeks	92	90
Hired with cash benefit	70	43
Paid for some other way	30	57
Among Clients Who Hired with Cash Benefit
Number of Paid Caregivers
1	61	64
2	25	25
3 or more	14	10
Had Visiting Paid Caregiver(s)	84	74
Had Live-in Paid Caregiver(s)	31	37
Had Paid Caregiver Who Was a Relative	73	71
Overall Respondents (at Home for Last 2 Weeks)	172	223
Respondents Who Hired with Cash Benefit	109	87

HIRING METHODS
	Percent of Respondents
	Arkansas	New Jersey
Family Member	69	63
Friend, Neighbor, or Church Member	20	20
Worker Recommended by Family or Friend	9	12
Former Agency Worker	10	16
Through an Advertisement	4	6
Through an Employment Agency	1	1
Respondents Who Had Hired	123	93

TYPES OF ASSISTANCE FROM PAID CAREGIVERS
Status at 9 Months	Percent of Respondents
Status at 9 Months	Arkansas	New Jersey
Health Care
Taking medicine	64	79
Other routine health care	56	70
Personal Care
Bathing/showering	90	92
Eating	58	76
Household/Community Chores
Light housework	97	100
Transportation	57	52
Respondents Who Hired with Cash Benefit	109	87

USE OF CASH FOR EQUIPMENT AND MODIFICATIONS
Status at 9 Months	Percent of Respondents
	Arkansas		New Jersey
	Performed Activity	Used Cash Benefit	Performed Activity	Used Cash Benefit
Obtained/Repaired Equipment	42	18	41	12
Modified Home	29	12	17	7
Modified Vehicle	4	2	1	0
Number of Cash Recipients	152		135
Equipment may be for meal preparation, housekeeping, personal activities, communication, or personal safety.

USE OF AND SATISFACTION WITH PROGRAM SERVICES
Status at 4 or 6 Months	Percent of Respondents
Status at 4 or 6 Months	Arkansas	New Jersey
Got Help with Cash Management Plan*	75	64
Found Help Useful	93	94
Got Help Recruiting or Hiring**	49	42
Found Help Useful	96	84
Got Help Managing Fiscal Tasks***	84	93
* All Respondents	255	231
** Those Who Tried to Hire	203	166
*** Those Who Received Cash	191	84

SATISFACTION WITH PERSONAL ASSISTANCE
Status at 9 Months	Percent of Respondents
Status at 9 Months	Arkansas	New Jersey
Overall Satisfaction
Satisfied with help with transportation	90	83
Would recommend program to others	93	86
Among Those Who Hired with Cash Benefit:
Satisfied with how caregiver:
Fulfills personal care duties	100	100
Helps with medication/routine health care	100	100
Fulfills duties in house or community	98	99
Satisfied with times of day gets help	98	94
Satisfied with relationship	100	99
Paid caregivers complete tasks always or almost always	81	76
Would have difficulty changing caregiver's schedule	48	49
Overall Respondents	194	240
Respondents Who Hired with Cash Benefit	94	71

Summary

Programs are Working Well, but Some Early Delays in New Jersey
Large Majorities Hire Family Members
Consumers Received Assistance With Wide Range of Activities
Substantial Minorities Used Cash for Home Modifications and Equipment
Large Majorities Use Bookkeeping Services
Consumers Love the Program
- Happy with care received and relationship
- Flexibility
- Control over who gives care and when
Over 85 Percent Would Recommend Program to Others

REPORT SCHEDULE
	Due Dates
	AR	NJ	FL
Implementation Analysis	6/01	10/01	4/02
Survey Outcomes
Use of PAS and quality of care	1/03	3/04	3/04
Informal caregivers/paid workers	1/03	3/04	3/04
Claims Outcomes
Medicaid and Medicare costs	6/03	9/04	9/04
Participation	7/03	10/04	10/04
Cross-state/Cross-topic		1/05
Some staggering of reports will be necessary.

Consumer-Directed Fiscal and Supportive Intermediary Services: An Overview

Susan A. Flanagan, MPH
EP&P Consulting, Inc.

I. Overview

Historically, professional authority has played a dominant role in the social organization of medical care and related human services.
Over the pay decade, the countervailing philosophies, of consumer-direction and self-determination have begun to assert themselves in the health and human services domain.
The philosophy of consumer-direction has developed, in part, from the independent living and disability rights movements. From this philosophy has developed consumer-directed personal assistance service programs.
The philosophy of self-determination has developed from the developmental disability arena. Self-Determination modes of financing and of delivering services emphasize a participant-driven approach and individualized budgeting.
Consumer-directed modes of financing and delivering of support services permit the individual--as opposed to medical or social work professionals--comparatively greater choice and control over all aspects of service provision: hiring/selecting and training workers, defining their duties and work schedule, deciding when and how specific tasks or services are to be performed and discharging workers when appropriate.
Recently, an increasing number of states have begun to apply the principles of consumer-direction to their support service delivery systems for persons with disabilities and chronic conditions of all ages.
Although there is no single service delivery model that encompasses the entire range of consumer-directed support service programs, in general, a service can be considered consumer-directed if the person receiving the service has choice and control over: (1) identifying their service needs and developing their service plan, (2) hiring/selecting their worker(s), (3) setting the terms and conditions of work, (4) managing or purchasing services to manage the administrative responsibilities of an employer, in particular employment taxes and payroll, and (5) supervising, disciplining, and terminating their worker(s) as necessary.
With increased individual choice and control come responsibilities, many of which are imposed by federal, state and county statutes and regulations.
A challenge for states and local governments implementing consumer-directed support service programs is balancing individuals' desire for enhanced choice and control over their services and workers with regulatory compliance, program accountability, liability and program participants' health and safety.
One concept that has emerged from states' experience with consumer-directed support service programs is the intermediary service organization (ISO).
ISOs can provide an array of fiscal and supportive services to public payers, program participants and their representatives and to a limited extent, workers, in order to facilitate the delivery of consumer-directed support services.
The type of ISO services appropriate for an individual depends on his or her ability and desire to perform the required employer tasks for his or her worker(s).
Six ISO models have been identified in the literature (Flanagan and Gree, 1997). They vary in their corporate organizational structure, the types of services provided, administrative costs and the nature of the employer/employee relationship.
This intensive workshop will be to: (1) provide an overview of the types of intermediary service organization (ISO) models currently being used in conjunction with consumer-directed support service programs with a focus on Supportive, Fiscal ISOs, and Agency with Choice ISOs, (2) review issues that states have had to address in implementing consumer-directed support service programs using ISO, and (3) provide "real life" operational information regarding the tasks, benefits and challenges related to operating these entities.

II. Types of Intermediary Service Organizations (ISOs) that Facilitate Individuals' Use of Consumer-Directed Support Service Programs

NEW HAMPSHIRE'S SELF DETERMINATION PROJECT SUMMARY OF INDIVIDUAL OUTCOMES
ISO Model	Operating Entity	Worker's Employer of Record	ISO's Responsibilities
Fiscal Conduit ISO	Government or Vendor	Individual or representative unless they choose to use an agency for the provision of supports.	Disburse public funds via cash or voucher payments to individuals/representatives and related duties (e.g., invoicing state, processing worker time sheets. Providing reports for State and individuals and their representatives.)
Government (IRS Employer Agent) Fiscal ISO	State/County (IRS Rev. Proc. 80-4)	Individual or representative unless they choose to use an agency for the provision of supports.	Per IRS Revenue Proc. 80-4, Fiscal ISOs act as "employer agents" for individuals/representatives for limited purpose of withholding, filing and depositing federal employment taxes. They also invoice the state for public funds manage payroll (including state taxes and insurances) and distribute workers' checks and pay other vendors as required. Some also broker workers' compensation and other insurance policies on behalf of individuals/representatives.
Vendor Fiscal ISO	Vendor (IRS Rev. Proc. 70-6)	Individual or representative unless they choose to use an agency for the provision of supports.	Same as Government model above (also an IRS Employer Agency) except that the vendor entity performs the FI functions in accordance with IRS Revenue Proc. 70-6.
Supportive ISO	Distinct vendor, services provided through other ISO models or independent individuals selected by an individual/rep. or state.	Individual or representative or agency	Provide an array of supportive services to individuals, representatives and, on a limited basis, to workers including: conduct employer skills training, (e.g., employment tax and payroll management), assist with recruitment and hiring regular and relief.
Agency with Choice ISO	Agency (e.g., CIL, Home Health, AAA, or Social Service)	Agency or its subcontracting agency (e.g., CIL, Home Health, AAA, or Social Service Agency)	Invoice State for public funds, process employment documents and criminal background checks on workers, manage all aspect of payroll for individuals/representatives. May also provide supportive services as described above and train and monitor performance.
Spectrum ISO	Agency (e.g., CIL, Home Health, AAA, or Social Service) and subcontracting agencies, if applicable	Individual, representative or agency	Provides Fiscal Conduit, Fiscal Agent, Supportive and Agency with Choice services under the umbrella CD-PAS program either directly to individuals/representatives or through the use of subcontractors.

III. Use of ISO Models by the Level of an Individual's Ability and Desire to Manage the Employer-Related Tasks Associated with Consumer-directed Support Service Programs

unavailable at the time of HTML conversion--will be added at a later date.

IV. What are Fiscal ISOs?

There are three models of Fiscal ISOs: (1) Fiscal Conduit, (2) Government (IRS Employer Agent) Fiscal ISO, and (3) Vendor (IRS Employer Agent) Fiscal Intermediary. In all three models, the individual is the employer of record of his or her worker(s).
Fiscal Conduit ISO. This model is often used by state and local governments to administer consumer-directed support service programs that allow individuals to receive public funds via cash grants or vouchers and pay their workers directly. Either a government entity or a private vendor entity under contract with a government entity can serve as the Fiscal Conduit ISO. The Fiscal Conduit ISO may also: (1) invoice a government entity to obtain individuals public benefits for disbursement, (2) collect and verify workers' time sheets, and (3) generate standardized reports for the government entity with which it has a contract and program participants and their representatives when appropriate.
Under this ISO model, individuals or their representatives are the employer of record of their workers (those not from agencies).
Government (IRS Employer Agent) Fiscal ISO. Under this Fiscal ISO model, a state or local government entity may apply for and receive approval for the IRS (under IRS Revenue Procedure 80-4) to be an employer agent on behalf of individuals for the limited purpose of withholding, filing and depositing workers' employment taxes (e.g., FICA, FUTA/SUTA). These entities also manage state and federal income taxes if required/requested, federal advanced earned income credits, if applicable, withhold, file and deposit state employment taxes (SUTA/disability) and prepare and distribute workers' payroll checks. Fiscal ISO also may broker worker's compensation and/or group health insurance policies, collect and verify worker timesheets, process and pay non-labor related invoices, conduct criminal background checks on prospective workers, assist individuals with verifying workers' citizenship/legal alien status and generate standardized reports for the state/county program agencies, program participants and their representatives, when appropriate.
Under this Fiscal ISO model, a government entity can perform these employer functions and ensure program accountability and tax and labor law compliance without being considered the employer of record of an individual's workers.
The individuals/representatives are the employer of record of their workers (those not from agencies).
Vendor (IRS Employer Agent) Fiscal ISO. Under this Fiscal ISO model, a private or public vendor entity or authority may apply for and be approved by the IRS (under IRS Revenue Procedure 70-6) to act as an employer agent on behalf of individuals for the limited purpose of withholding, filing and depositing workers' employment taxes (e.g., FICA, FUTA/SUTA). These entities also manage state and federal income taxes if required/requested, federal advanced earned income credits, if applicable, withhold, file and deposit state employment taxes (SUTA/disability) and prepare and distribute workers' payroll checks. Fiscal ISO also may broker worker's compensation and/or group health insurance policies, collect and verify worker timesheets, process and pay non-labor related invoices, conduct criminal background checks on prospective workers, assist individuals with verifying workers' citizenship/legal alien status and generate standardized reports for the state/county program agencies, program participants and their representatives, when appropriate.
Under this Fiscal ISO model, a vendor entity can perform these employer functions and ensure program accountability and tax and labor law compliance without being considered the employer of record of an individual's workers.
The individuals/representatives are the employer of record of their workers (those not from agencies).

V. What is a Supportive ISO?

Supportive ISO. Under this model, a private or public vendor or authority or an individual (e.g., an independent case manager, support broker) may provide a variety of support services to individuals and their authorized representative, when applicable, and on a limited basis, to workers. Supportive services can include: conducting individuals' assessments and re-assessments; providing them with employer skills and self-advocacy training; assisting individuals/representatives with the recruitment, screening and hiring of workers including conducting criminal background checks on potential workers, assisting individuals in developing emergency/back-up service plans and accessing workers, developing and maintaining worker registries; arranging training opportunities for workers (on a limited basis); providing case management/counseling services; and monitoring service quality and individuals/representative satisfaction.
Program participants may or may not be the employer of record when accessing services from this type of ISO model.
This ISO model usually operates in conjunction with one of the other ISO models (Fiscal ISO) or as services incorporated into another model (e.g., Agency with Choice ISO or a combination Counseling/Fiscal ISO).

VI. What is an Agency with Choice ISO?

Agency with Choice ISO. This ISO model may include a variety of different types of agencies (e.g., Center for Independent Living, social service agencies such as United Cerebral Palsy and Easter Seals, traditional home health agencies, Area Agencies on Aging, and organizations that are developed specifically to fulfill the role, such as Concepts of Independence in NY or Granite State Independent Living Foundation (GSILF) in NH) that provide support services to individuals in a consumer-directed manner. The agency is the employer of record of the worker while the individual and/or his or her representative is considered the managing employer of the worker. Duties of an Agency with Choice may include: invoicing the state/county for public funds, processing employment documents, conducting criminal background and reference checks, managing all aspects of payroll, providing a variety of support services as described in the Supportive ISO description earlier, providing training for workers and monitoring workers' performance in conjunction with the individual and his or her representative. Individuals and their representatives are often permitted to recruit their workers and refer them to the ISO for processing and discharge them when necessary. Some Agency with Choice ISOs (e.g., Concepts for Independence in NYC and GSILF in NH) allow individuals to train their workers, supervise and evaluate all aspects of their activities and terminate them when necessary.
The services provided and level of consumer-direction afforded to individuals and representatives under the Agency with Choice ISO model can vary significantly depending on the needs of individuals and their representatives, program design, the type of agency involved, and its geographic location (rural vs urban).

VII. What is Spectrum ISO?

Spectrum ISO. This is an operational model where a variety of fiscal and supportive intermediary services are made available to individuals and their representatives under one umbrella ISO. The ISO may choose to provide all of the fiscal and supportive services itself or it may subcontract with other entities to provide some of the services. The individual or representative can choose whether or not to be the employer of record of his or her worker depending on the type of intermediary services they select. This ISO model provides a seamless way for a state/county to provide services that best meet an individual's needs throughout his or her life while enhancing the individual's choice and control.

VIII. ISO Models Operationalized as a Spectrum ISO

unavailable at the time of HTML conversion--will be added at a later date.

IX. What Issues Have States Had to Address In Implementing Consumer-directed Support Service Programs Using ISOs?

States have had to address a number of issues in implementing consumer-directed support service programs using Intermediary Service Organizations (ISOs). These include:
- Determining the size, configuration and characteristics of the target service population
- Selecting the appropriate ISO model(s) for the targeted service population:
  - individuals have varying levels of ability (e.g., cognition) and desire to perform the required employer tasks.
- Determining individuals' and representatives' ability and desire to manage employer-related tasks:
  - Some consumer-directed support service programs provide skills training to individuals/representatives to assist them in participating in the program, and
  - Some consumer-directed support service programs assess individuals' competency in performing the required tasks in order to certify them to participate under certain ISOs (e.g., Fiscal Conduit).
- Defining the role and responsibilities of individuals' representatives in consumer-directed support service programs that use ISOs:
  - a relative versus non-related representative,
  - a representative who is a primary member of the individual's Network of Support versus someone who interacts with the individual on an infrequent basis (e.g., lawyer, legal guardian or person with durable power of attorney), and
  - the role the representative is willing to play (e.g., be the employer of record of the individual's worker(s)).
- Determining the optimal plan for initiating the system (e.g., pilots, phase-in for newly eligible individuals, geographic locations, etc.)
- Defining the role and responsibilities of the ISO(s) and the type of services it will provide:
  - Clearly defining the roles and responsibilities of each type of ISO used, the program agency, the individual and his or her representative and workers and identifying the services to be provided by each ISO type is key for effective program design and implementation.
  - Identifying and resolving any potential areas where there may be conflicts of interest.
- Establishing the budget levels that will be available to the individual for services through the ISO and resolving issues relating to potential surpluses and deficits in individuals' accounts.
- Identifying federal requirements (e.g., labor, tax, insurance) for Fiscal ISOs:
  - Requesting approval to be an IRS Employer Agent and filing the IRS Form 2678 (Government vs Vendor Fiscal ISO) on behalf of individuals/representatives,
  - Filing IRS Forms SS-4 and obtaining a federal employer identification number (EINs) for the entity to be the Fiscal ISO (Government and Vendor Fiscal ISO) and for each individual a Vendor Fiscal ISO represents,
  - Minimum wage and overtime rules per the federal Fair-Labor Standards Act for Domestic Employees
    - Domestic service worker
    - Companionship exemption
    - Live-in help exemption
    - Night help provision
    - Recent DoL proposal to amend the provisions of the Companionship Exemption
  - Federal income tax withholding (optional for domestic employees),
  - Social Security Domestic Reform Amendments (SSDERA) of 1994
    - Filing IRS Forms 940/941 quarterly vs Schedule H annually,
    - Social Security and Medicare withholding (FICA),
    - Federal Unemployment Tax withholding (FUTA),
  - Identifying federal requirements (labor, tax, insurance) for Fiscal ISOs (continued):
    - Depositing rules,
    - Preparation of the IRS Forms W-2 and W-3,
    - Refunding the employer and employee for withheld employment taxes (e.g., FICA) when the worker does not earn the minimum gross wage amount to pay federal employment taxes in a calendar year (i.e., $1,300 in CY 2001 for FICA),
    - Federal Advanced Earned Income Credit, and
    - INS Verification of Citizenship and Legal Alien Status.
  - Identifying local and state-specific requirements (e.g., labor, tax, insurance, worker training and nurse practice act) for Fiscal ISOs:
    - Some states' Departments of Labor do not recognize the companionship and live-in help exemptions,
    - State income tax withholding, filing and depositing may be required even though federal income tax is not,
    - State unemployment tax (SUTA) laws related to withholding, filing and depositing vary by state,
    - Worker's compensation law varies by state,
    - Five states have disability insurance laws (CA, HI, NJ, NY and RI),
    - Some states require that criminal background checks be performed for all persons providing supportive services in the home,
    - Some states have a basic training requirement for all non-licensed personal care workers and may require their activities to be overseen by a health care professional,
    - State nurse practice acts vary by state and can have a significant effect on what a worker may or may not do for an individual in the home, and
    - Some states and counties have specific contracting requirements for service providers.
  - Recruiting entities to bid to be an ISO(s):
    - Currently, ISOs are a new and broadly defined niche market; with a small provider pool that varies significantly in vendors' knowledge of and experience with the required tasks,
    - State and county RFP processes represent a significant amount of time and effort, and
    - Some states have required ISOs to provide a broad range of services and, at times, these requirements can deter vendors from bidding, limiting the selection pool.
  - Selecting an ISO(s) vendor/provider and monitoring its performance:
    - An ideal ISO provider is one that has the required skills and experience and is committed to the philosophy of consumer-direction,
    - States continue to analyze the benefits of having one statewide ISO or a number of regional ISOs. Decisions reflect a number of trade-offs, and
    - Development of clear and concise contracts with measurable performance standards and an effective monitoring system is key to successfully purchasing services from an ISO. States/counties must be able to terminate an ISO contract without undue service interruption for individuals when poor performance occurs.
  - States vary in how they pay ISOs (e.g., total budget amount versus price per transaction performed).
  - States vary on how they operationalize a Fiscal ISO (e.g., issue state contract as adjunct to State's fiscal agent vs Medicaid provider).
  - States vary in whether and how they apply cost-sharing provisions to program participants to cover some/all of the cost of ISO services rendered.
  - States that choose to be the Government (IRS Employer Agent) Fiscal ISO:
    - Find that incorporating the payroll function for workers into the state payroll function extremely problematic; running separate but parallel systems has been found to be more successful,
    - Find that identifying and tracking expenses related to performing the Fiscal ISO function is a challenge, and
    - Find it a challenge to achieve significant cost efficiencies.
  - Claiming federal matching funds for the ISO function:
    - DHHS/HCFA is in the process of finalizing how ISO expenses will be treated for the purpose of claiming FFP.
  - HCFA's Medicaid provider agreement requirement:
    - HCFA requires that Medicaid agencies execute a Medicaid provider agreement with every provider and vendor that receives Medicaid funds,
    - A provider agreement can be brief (1-2 pps). To date, HCFA is in the process of determining what the key components should be. However, the agreement should include an assurance/statement that the worker is capable of performing the required tasks.
  - Identifying and enforcing the criteria that agencies must meet to be an Agency with Choice ISO.
  - Availability of benefits for workers associated with Agency with Choice ISOs.
  - Designing Spectrum ISOs that have the appropriate "fire walls" to eliminate possible conflicts of interest.
  - Addressing individual/representative noncompliance:
    - The majority of support service workers are employees of someone. Rarely are they independent contractors. This can be verified by filing an IRS Form SS-8 to request a ruling from the IRS for a particular worker.
    - The liability for individual/representative non-compliance with filing and paying federal and state employment taxes and insurances rests with the individual/representative. However, taxing authorities (particularly state unemployment) may look to the state when an individual can not pay the back taxes due, since the state is the original source of the public funds. As a result, compliance is important to reduce state and individual liability.
    - In the case of the RWJ Cash and Counseling Demonstration Projects, an individual/representative who is unsuccessful at managing his or her grant funds directly (using the Fiscal Conduit option) may use the Vendor Fiscal ISO option rather than leave the consumer-directed support service program completely.
  - Overall, implementing ISOs represent a significant commitment of time and effort for state program administrators and the entities who wish to operate as ISOs.

Consumer/Survivor Research: A Decade of Learning

Jean Campbell, Ph.D.
Missouri Institute of Mental Health

Research ought to and can enhance consumer choice, power, and knowledge*

*From Consumer/Survivor Mental Health Research & Policy Work Group (1993)

Integrating Diverse Cultures into the Conduct of Research

The failure to include consumers and other culturally diverse groups within services research may

compromise research findings
hinder the ability of service providers and policy-makers to understand consumer needs.

Nothing About Me, Without Me

Adopting the slogan "Nothing about me, without me," mental health consumers and people of color have moved rapidly to be involved in the design and implementation of mental health services research and evaluation.
The growth and acceptance of such partnerships show the potential for progress when different cultures work together in relationships of mutuality and respect.
However, the inclusion of diverse groups within the conduct of research has presented interesting challenges that "expert-driven" models of research have proven inadequate to address.
In particular, the empowerment of mental health consumers in the administration, design, implementation, and analysis activities has necessitated an on-going dialogue between consumers, consumer researchers, and non-consumer researchers to reach common ground regarding issues of
- authority,
- expertise,
- and language.

What Divides Us

It is important to remember that mental health programs, including those that are consumer-operated, function within a political system in which data are often exercised in struggles for influence.
There is no common language or experiences that would naturally bring different constituencies together.
Values and goals that arise from culturally dissimilar experiences, tend to separate people and polarize discussion.

Bridging Differences

Bridging differences between people on a personal level needs to be supported through group activities that promote respect, understanding, and appreciation of the difficulties that collaboration presents.

Towards a Consumer/Survivor Research Agenda
The Well-Being Project: Mental Health Clients Speak for Themselves
(1986-1989)

In 1979 Prager and Tanaka reported to the Ohio Department of Mental Health on the results of involving mental health consumers in evaluation. They concluded: "Representing the consumer's perspective on the meaning of mental illness and the correlates of 'getting better,' the process of client involvement in evaluation design and implementation is not only realistic and feasible; it is, we feel, a professional necessity whose time is overdue."

A Landmark Study

Funded by the California Department of Mental Health Office of Prevention
First consumer research project: Conducted by the California Network of Mental Health Clients
- Jean Campbell, Principal Investigator
- Ron Schraiber, Co-Investigator

Research Question

What promotes or deters the well-being of adults with severe and persistent mental illness in California?

Study Design: Developed, Administered and Analyzed by Mental Health Consumers

State-wide Survey
Qualitative and Quantitative Methods
- focus groups to develop items
- open-ended questions included
- in-depth interviews
- multiple choice, likert scaled items
Triangulation:
- clients (N=331)
- family members (N=53)
- mental health professionals (N=150)
Convenient sample
Consumer surveyors
- face-to-face interviews
- self-administered interviews (mail)
- group interviews

Discovering the Consumer Perspective

Asking New Questions

negative outcomes identified
self-management skills revealed
importance of personhood established
effects of prejudice and discrimination quantified
incongruity of values, perspective, and identified needs between consumers, family members, and mental health professionals found

Findings

40% of mental health clients surveyed felt that "all" or "most of the time" people treated them differently when they found out they have received mental health services.
- like they are violent (16%)
- like a child (21%)
- like they don't know what is in their own best interest (31%)
- like they are incapable of caring for children (20%)
- like they are incapable of holding a job (33%)
More than half of the clients surveyed indicated that they "always" or "most of the time" recognize signs or symptoms of psychiatric problems and that they can take care of these problems before they become severe.
48% indicated that they have avoided treatment due to fear of involuntary commitment.
30% reported that they had "little" or "no" control over the kind of mental health services they receive.

Peer Support Outcomes Protocol
Development of an Evaluation Protocol for Community-Based Peer Support Programs
(1996-2001)

Consumer-operated peer support programs emerged in the 1980s as an alternative to traditional mental health services.
To survive in an era of evidence-based funding, peer support programs need to measure:
- cost,
- effectiveness,
- quality,
- utilization
- and appropriateness of the services they provide.

Purpose of the POPP

The Peer Support Outcomes Protocol Project developed, field-tested, and will soon distribute an evaluation protocol that measures outcomes and satisfaction of community-based peer support programs that are operated by mental health consumers/survivors.

Consumer-Developed Projects

Protocol developed and tested by the Program in Consumer Studies and Training at the Missouri Institute of Mental Health in St. Louis.
Funded by the National Research and Training Center on Psychiatric Disability at the University of Illinois-Chicago.

Outcome Domains

Specific outcome domains organized into individual modules:

Demographics
Employment
Social Support
Well-Being (Recovery, Empowerment & Personhood)
Crime/Violence
Services
Housing/Community Life
Quality of Life
Program Satisfaction
Hospitalizations

Use of the POPP

Assist the consumer self-help field to assess program outcomes
Present service outcomes to public funding authorities and manage-care organizations
Help consumers improve the organization and delivery of peer support programs

Phase One (1996-1997)

National Survey of Data Needs of Peer Support Programs (N=30)
Sorting and ranking of survey items from review of consumer literature and instruments
Instrument development
IRB approval

Phase Two (1997-1998)

Protocol Field-testing
Instrument review and refinement
- organization
- clarity of item wording
- respondent burden
- ease of administration
- consumer sensitivity

Phase Three (1998-2000)

Development of Interviewer Training Manual
Development of Q-by-Q
Psychometric Testing (test N=150; retest=48)
- reliability
- validity

Phase Four (2000-2001)

Tool Kit Development
Knowledge Exchange
Plans for APS (application program services)

Consumer-Operated Service Program (COSP)
Multi-Site Research Initiative
(1998-2002)

Self-Help Research

Numerous research studies show that participation in self-help groups can help people improve the quality of their lives significantly.
Studies show that support groups can reduce the need for medical care and hospitalization.

Consumer Self-Help Research

Found a decline in both symptoms and concomitant psychiatric treatment as a result of participation in consumer-operated services (Galanter, 1988).
Positive changes in perception of self, social functioning, decision-making, and symptomatology linked to participation in consumer-operated services (Carpinello et al., 1992).

Consumer-Operated Service Program Multi-site Research

The Consumer-Operated Service Program (COSP) Multi-site Research Initiative is a federally-funded national effort to discover to what extent consumer-operated programs as an adjunct to traditional mental health services are effective in improving the outcomes of adults with serious mental illness.

Features of COSP

At $20 million, COSP is one of the most significantly funded cooperative agreement in the current CMHS budget
Seven study sites located throughout the U.S. and a Coordinating Center at the Program for Consumer Studies and Training (MIMH)
Over 1850 participants recruited to date
Four years of research supported

Participating Study Sites

Connecticut
Florida
Illinois
Maine
Missouri
Pennsylvania
Tennessee

What is a COSP?

A consumer-operated service is administratively controlled and operated by consumers and emphasizes self-help as its operational approach

Types of Consumer-Operated Services

Drop-in Centers
Educational & Advocacy Training Programs
Peer or Mutual Support Services

Target Population

Study participants are defined as persons age 18 and over who currently or at any time over the past year have had a diagnosable mental, behavioral, or emotional disorder of sufficient duration to meet diagnostic criteria specified within the DSM-IV that has resulted in functional impairment which substantially interferes with or limits one or more major life activities.

COSP Big Six Study Outcomes

Employment
Empowerment
Housing
Service Satisfaction
Social Inclusion
Costs

Research Design

Rigorous Methodology
- Multi-site Design
- Random Assignment
- Experimental
  - Intervention: Consumer-Operated Program + Traditional Mental Health Services
  - Control: Traditional Mental Health Services Only
Logic Model
Common Protocol
Data Collection: Baseline, 4, 8, 12 months
Fidelity/Implementation Assessments, Site Visits, Common Ingredients

Key Operational Values

Consumer Involvement
Consumer Education
Extensive Technical Assistance
Electronic and Interactive Communications
Collaboration
Cultural Competency

Consumer Partnership

SC Consumer Representatives
Consumer Advisory Panel
Site Consumer Advisory Boards
Consumer Researchers
Research Training
- Research Glossary
- Workshops
- Technical Assistance

Building Consumer Trust

Full access to project information
Supportive communication infrastructure
Consensus decision-making
Telling our stories
Use of the language "we," "our" and "us"

A Learning Community

Learning is the core objective and this should guide all decision-making.
Mike English, CMHS

Visit our website

One of the hallmarks of the COSP is the effort made to use technology to facilitate work and disseminate information.

http://www.cstprogram.org

What Is Necessary

In order to accommodate the diverse cultures that are now part of the research environment, it is necessary to pause and encourage critical discourse, and to incubate new relationships and ideas as participatory processes are established.

Looking Within

Consumer/survivor research has offered the opportunity to consumers and professionals to look within, and to "research" in a literal sense the terrain of a priori assumptions about how research should be conducted and by whom.

The Need for Rigor

Scientific rigor in methods and practices must be maintained since the weight of disbelief in public policy will surely demand that researchers push harder for clarity in research designs and data quality.

Conclusion

Ultimately, consumer participation in research will test the proposition that the integration of diverse cultures into the conduct of research ought to and can enhance scientific knowledge that is useful and meaningful for all participant groups.

Demonstrating Self-Determination: An Evaluation of Policy and Implementation Issues

Valerie Bradley and Sarah Taub
Human Services Research Institute

Basics of Self-Determination

People decide what they want
There is support to make decisions
There are real options to choose from
The process is simple and person-centered
With control comes responsibility
An approach, not a model, not a program

Antecedents Include...

Family support programs,
Personal assistance programs
Employment voucher innovations
Cash and counseling programs

It is About Changing Systems...

Shifting authority for decision making to the individual.
Changing the way supports are funded to give people direct control over dollars.
Changing the role of service providers, case managers and support staff.
Putting the person into the center of the relationship between the state and provider organization.

RWJ Sites		Other States On The Move
Arizona	New Hampshire	California
Connecticut	Ohio	Colorado
Florida	Oregon	Idaho
Hawaii	Pennsylvania	Montana
Iowa	Texas	North Carolina
Kansas	Utah	Rhode Island
Maryland	Vermont
Massachusetts	Washington
Michigan	Wisconsin
Minnesota

Purpose of the Assessment

Demonstration projects in 19 states awarded grants by RWJF to the tune of $5M
Common elements and strategies including:
- individually controlled budgets
- supported planning processes
- administration changes to make it work
HSRI examined impact of demonstrations over past three years

Guiding Questions

Did the projects meet their goals?
What actions did the projects take?
What obstacles or constraints were encountered?
What were the results of the actions taken?
What national policy issues must be addressed?

Information Collected

System-level analysis based on logic model
- State and local context (mediating variables)
- Actions taken and new structures put into place (independent variables)
- Outcomes for participants and for the system (dependent variables)
Financial management study of selected states

Year Two Assessment Focus

Actions taken to engage self-advocates in the change process and the roles played by self-advocates nationally
Paths taken to resolve operational and funding riddles
Outcomes associated with systems change and the number of people supported
The extent to which the Demonstrations move beyond a limited "pilot status"
National policy implications

Financial Management Study

Looked at demonstration states using HCBS Waiver funds (KS, MN, MD, MI, UT, VT, WI)
Purpose: to compare traditional methods of financing with consumer-managed arrangements
Document how states are doing this, what works well, and what the challenges are

Components of Financial Management

Fund allocation and authorization of individual spending amounts--how funds are distributed by states to individuals, equitably and in accordance with formal rules
Rate/price setting--processes involved in establishing the amounts to be paid to providers, consumers, and families for various supports
Billing and payment--how invoices are prepared and submitted to payers; how payments are made, monitored, and kept within authorized limits
Employee administration--administrative tasks required of employers
Management information systems--automated systems that support financial and program operations
Resource requirements--are the workloads increasing, decreasing, or staying the same?

What changes are happening?

Funds are flowing through a mediating entity, not directly to consumers
Shift from retrospective payments to prospective rates or "ranges" of costs
Gradual movement away from advance payments and fixed contracts toward "open contracts"

Workload/Resource Issues

Formal risk reserves are not being established--savings immediately applied to urgent needs
Service coordinator workloads are increasing
Shift in employee administration responsibilities from providers to fiscal intermediaries
MIS needs increased--some projects have met these demands with automated systems but others still doing budgets by hand (uneven across states)
"Start-up" workloads are high (for service coordinators, administrators, financial managers, etc.)
Use of committees for budget review and authorization

What challenges lie ahead?

Making waiver funds work for self-directed and/or self-managed supports
Standardizing automated accounting and information systems within states (particularly in county-based states)
Further defining and establishing service coordinator roles and responsibilities
Expanding use of fiscal intermediaries with focus on consumer control

Points of Tension

How do we set personal budgets?
Who does the "broker" really work for?
Do brokers end up with more (not less) authority?
What about existing case managers?
Do we really need a "fiscal intermediary"?
For adults with disabilities, is this a person or family driven approach?
Where does his leave traditional providers?
Won't this cost more, not less?
How do we assure safety and well-being?
Can self-determination exist when another speaks or "stands in" for the person?
Have we made the process of self-determination too detailed with the wrong priorities?
How do we define the idea of want versus need in terms of developing a budget?
How do we ensure equity?

Finding Balance...
unavailable at the time of HTML conversion--will be added at a later date.

Implications for Further Reform

Support advocacy (family support councils, self-advocacy) and create a training network
Build on some "ripe providers"
Explore new service configurations
Build capacity of direct support staff
Encourage competition
Build community capacity
Give disenfranchised communities power over funding (also need competent brokers)
Communication/language is key
Information should go both ways
Have to support people to be present
Create a forum to discuss issues between families and individuals
Consider pooling funds in--especially in disadvantaged/diverse communities

Focus on Self-Advocates

We met with two self-advocates from seven states in Baltimore in October (MI, OR, MD, WI, MA, VT, UT)
We asked about self-determination in their state and what could be done to assure that self-advocates were involved in setting policy.

Self-Advocates Said...

That Self Determination means that...
- I am a person like all people: My life is my own.
- I speak for myself... "Speak Up" "Stick up for myself".
- I make my own choices
- I am the boss of my own life.
- I make my decisions in my own life.
- I do for myself... and not depend on others so much.
- I am a person like all people: My life is my own.
There is an awakening about self determination...
Self advocates are participating on boards, committees and task forces locally and at the state level.
Self advocates are becoming issues based and finding a voice...
States are becoming more flexible in how money is spent
There are problems with the doing.
People don't know what self determination is.
Caseworkers don't allow people to make their own decisions.
Agencies say they believe in self-determination but then don't want to give up the money (or the power)
Agencies don't want to get us the supports we want
People promote self determination but there is an expectation of failure. Agencies "set things up" for it to fail by making it too hard to do.
Professionals or staff not talking directly to us... talking to others instead of us.
We need to define self-determination...
We know the principles but people don't get it...
It's problems with the doing that trips people up

Need and Opportunity

"A service system for [people with disabilities] and others in need of support will have to be a system in constant change. It has to be continuously developed, if the 'customers' are not to be left behind and to become hostages of an outdated way of doing things."
Alfred Dam (undated), Denmark

Elder Preferences for Consumer Directed Community Care: Implications for Policy and Management

Mark Sciegaj, PhD, MPH
Brandeis University
A project funded by the Robert Wood Johnson Foundation

Why This Project

Importance of providing elders with opportunities to make meaningful choices.
Little empirical data on:
- The extent of elder desire to participate in the management and supervision of services
- How decisions/needs might vary by race/ethnicity or gender

Project Objectives

Develop and test measures of elder preferences for consumer direction
- Service Control Scale
- Worker Control Scale
- Decision Control Scale
- Desire for Information Scale
Explore possible sources of variation
- Health/functional status scales
- Service satisfaction scales
- General locus of control scale
- Availability of informal supports
- Age
- Gender
- Race/ethnicity

Project Methods

Survey Development/Translation
Elder Recruitment
Interviewed 731 elders currently receiving care
- 200 Chinese
- 200 African American
- 131 Latino
- 200 White (Western European)

FINDINGS: RACIAL/ETHNIC LIFE SITUATION VARIATION (n=731)
	African American (A)	Chinese (B)	Latino (C)	White (D)
Living Alone***	88%	61%	66%	80%
Health *** (Excellent-Good)	29%	11%	1.5%	22%
Functional Status***	16.83 (B,C)	15.47 (A,D)	13.25 (A,D)	17.22 (B,C)
Age**	77.42 (B,C)	80.07 (A,D)	74.75 (A,D)	77.17 (B,C)
<.01; *<.001

FINDINGS: RACIAL/ETHNIC LIFE ATTITUDE VARIATION (n=731)
	African American (A)	Chinese (B)	Latino (C)	White (D)
Locus of Control***	16.17 (B,C,D)	17.33 (A,C,D)	13.31 (A,B,D)	15.39 (A,B,C)
Service Control***	1.03 (B,C,D)	.26 (A,C,D)	2.44 (A,B,D)	.73 (A,B,C)
Worker Control***	.92 (B,D)	.30 (A,C)	.73 (B,D)	.40 (A,C)
Decision Control**	.72 (B,C,D)	.23 (A,D)	.29 (A,D)	.39 (A,B,C)
<.01; *<.001

New Approach 1: Cash & Counseling Model

In this approach, you will receive a monthly cash payment, along with some information, training, and advice to help you plan and manage your own care services. In this approach you can also get advice and training from a counselor to learn how to locate, hire, train, schedule, and manage your worker. If you choose, you can also learn how to fill out tax forms for the worker and perform other duties of being an employer. Or, you may have an expert fill out tax forms and do the payment part of the job for you.

New Approach 2: Social HMO Model

In this approach, the agency gives you a set budget based on your needs. Together with the agency you decide what services and what schedule you want. In this approach, the agency would then take the responsibility for finding and purchasing the services with you.

New Approach 3: Traditional Care Management Model

After speaking with you, the agency would decide what services and schedule you will get. In this approach, the agency would take the responsibility for choosing, finding and purchasing the services you need.

FINDINGS: RACIAL/ETHNIC PREFERENCES FOR CARE MANAGEMENT MODELS (n=731)
	African American	Chinese	Latino	White
Approach 1: Cash & Counseling	9%	3%	1.5%	8%
Approach 2: SHMO	17.9%	47%	7.7%	16%
Approach 3: Traditional Model	73.1%	50%	88.5%	78.6%

FINDINGS (n=731)
Significant Items	B
Preference for Care Management Model (1=Traditional Model)
Service control	-.3527*
Living alone	.5159*
Chinese	-3.5848***
African American x Worker	-3.894**
Chinese x Locus of Control	.1305*
Latino x Worker	-.9003**
Latino x Service	1.1814***
<.05; <.01; **<.001

FINDINGS (n=731)
Significant Items	B
Cash and Counseling Model vs. SHMO Model (1=Cash and Counseling Model)
Chinese x Living alone	-3.0369*
Decision control	.3060*
<.05; <.01; **<.001

CARE DELIVERY APPROACH COMPONENTS
	Approach 1 (C&C)	Approach 2 (SHMO)	Approach 3 (Traditional)
More Choice	76.2%	76.2%	67.2%
Easier to get help	73.8%	96.4%	97.5%
Easier to get advice	78.6%	92.3%	96.5%
Little worries	50%	87.6%	91.2%
Enough Information	71.4%	91.1%	94.8%

WANT AGENCY PARTICIPATION...
	Cash & Counseling Model (n=42)	SHMO Model (n=169)	Traditional CM Model (n=520)
Schedule	35.7%	72.8%	80%
Recruit Worker	52.4%	80.5%	86%
Hire/Fire Worker	57.1%	74%	78.5%
Train Worker	61.9%	84%	88.3%
Pay Worker	61.9%	85.8%	87.9%

WANT COMPLETE CONTROL OVER...
	Cash & Counseling Model (n=42)	SHMO Model (n=169)	Traditional CM Model (n=520)
Service selection	66%	27.8%	34.2%
Service decisions	69%	27.2%	33.8%
Service schedule	59.7%	19%	31.9%
Recruiting worker	31%	10.7%	9%
Hiring/firing worker	28.6%	10.1%	6.3%
Training worker	31%	8.3%	5%
Paying worker	26.2%	6.5%	2.3%

FINDINGS: RACIAL/ETHNIC PREFERENCES FOR CARE MANAGEMENT COMPONENTS
	African American (n=201)	Chinese (n=200)	Latino (n=131)	White (n=201)	All (n=731)
CASH & COUNSELING
Easier to get help	26%	4%	24%	18%	23%
Less to worry about	23%	4%	26%	8%	18%
SOCIAL HMO
Easier to get help	58%	49%	50%	56%	55%
Less to worry about	35%	47%	37%	31%	34%
TRADITIONAL CARE MANAGEMENT
Easier to get help	88%	51%	96%	88%	90%
Less to worry about	76%	51%	95%	79%	82%

Implications for Policy and Practice I

Heterogeneity within racial/ethnic elder groups
- Programs and services should not make assumptions based on racial/ethnic group membership
Distributing risks for care maintenance and responsibilities
- Programs and services should be flexible in terms of how they structure care management approaches

Implications for Policy and Practice II

Closing the gap between elder preferences and professional judgments
- It is possible for care managers to solicit valid consumer perspectives on care preferences
Service Quality and Consumer Satisfaction
- Addressing consumer preferences may have important and positive implications for quality and satisfaction

Independent Choices: Oregon

Julia Huddleston
Oregon Department of Human Services, Senior and Disabled Services Division

What is Independent Choices?

Financially eligible for waivered services (300% of SSI standard)
At risk of nursing facility placement
Live in 3 count cachement area
Demonstrated stability

Consumers arrange for care and services

Consumers manage

The care and services purchased
The employees providing the care
The payroll for care providers
The budget for services purchased

Medicaid money is paid directly to consumer

Prospective payment
Consumer must meet all obligations of being an employer

Project required Section 1115 waiver

Waiver effective May 1, 2001

Cognitively impaired consumers can participate with surrogate decision makers

Consumers can employ family members including spouses as caregivers or service providers

Consumers self-select into the program

Different populations

Younger adults--original interest
Elderly--as waiver process went on, more "younger old" became interested
- In 1997, project enrollment estimated as 70% younger disabled/30% elderly
- In 2001, enrollment estimated as 60% younger disabled/40% elderly

Surrogate decision makers

Payroll and tax preparation services

Consumers who must use payroll service
Consumers who choose to use the payroll service at their own cost
Pilot site differences
- How far will the hourly wage go?
- Cash amount based on current hourly wage
  - "$8.12 an hour is pretty good money around here."
  - Oh, clients are going to have to pay at least $11 or $12 an hour."
- Will more family members be employed in rural areas?

Employing spouses as caregivers

Who will?
Why?

IndependentChoices: An Experiment in Consumer-Direction

Sandra Barrett
Project Administrator, IndependentChoices

The Choice

An Opportunity to Exchange Agency Personal Care Services for A Monthly Cash Allowance

The Social Marketing

Open Enrollment
Direct Mail
- Letters from the governor
- Letters to participants requesting referrals
- Notes with copies of news clippings
- Letters from participants with information about their experience
Public Service Announcements
- Television
- Radio
News Releases

The Players

18 Years Old or Older
- 71% Age 65 or Older
- 50% White/25% Black/25% Other
- 62% Female
- 75% Live in Rural Area
Receiving Medicaid
Need Personal Care
- New to Continuing Ratio is 33%
Willing to Participate
Able to Make Responsible Care Decisions or Have a Representative Decision-maker
- 43% Use a Representative

Closing the Deal

Request Information
Enter into Database
Telephone Contact by Enrollment Staff
Enrollment Home Visit
Completed Signed Consent Form

Show Me the Money!

Allowance
- Based on Personal Assistance Needs
- Approximately $8.00 per hour
- Average Allowance is $375.00 a month
Uses of Cash
- To meet Personal Care Needs
  - Hire Personal Care Assistant
  - Purchase Items and Services Related to Personal Care

The Pay Off
Attractive Program Features

82% of the Allowance is used to hire a PSA
- Family Member
- Friend/Neighbor
16% of the Allowance is used to Purchase Items Traditionally Unavailable Through Medicaid
- Personal Care Items; Assistive Devices; Health and Safety Items
- 2% is Saved

The Supporting Cast

Counseling
- Training
- Reassessments
- Support Resource
  - Develop Cash Plan/Answer Questions
Bookkeeping
- Accept Cash Allowance
- Disperse Cash According to Plan
- Serve as Fiscal Agent
  - Maintain Employee Files
  - Pay Payroll
  - Withhold/Pay Taxes

The Observations

Participants and family members express a high level of satisfaction with this program.
100% of participants are satisfied with the attendant hired.
80% are satisfied with their lives.
93% would recommend the program to others.
3 out of 4 are age 65 or older.
Most participants have chronic illnesses.
98% know the person being hired as an attendant.
95% are pleased with the attendant they have hired.
No one states that their life is worse since enrolling in IndependentChoices.

The Verdict

Consumer Direction Works
Consumer Direction is Not For Everyone
This Model Will Not Replace the Traditional Model
Respect for Preferences Should Be a Major Consideration in Program Design and Training

IndependentChoices

Debby Ellis, Program Manager
Arkansas Division of Aging and Adult Services, P.O. Box 1437, Slot 1412, Little Rock, AR 72203
Tel: 501-682-2441, E-mail: debby.ellis@mail.state.ar.us, Web site: www.independentchoices.com

New Jersey's Experiences

William Ditto
Executive Director, New Jersey Office on Disability Services

New Jersey's Reasons for Experimenting with Cash & Counseling...

Demographics
- Labor shortages now (& tomorrow)
Dissatisfaction
- Consumer complaints and issues
Empowerment of Consumers
- Increase of Personal Responsibility
Economics
- Prudent Purchasing

Personal Preference: The New Jersey Cash & Counseling Demonstration

Three Major Components:
- Marketing & Enrollment
- Fiscal Intermediary Service Organization
- Independent Contracted Counseling Agencies

The Process of Enrollment
- Consumer Data Form (PCA Agency)
- Verification (State Program Office)
- Letter/Booklet/Telephone Call
- Home Visit/Telephone Interview
- Baseline Interview
- Lottery

Show Me The Money
- Range of Monthly Cash Grants:
  - $282 (5 Hrs/Week) to $2,262 (40 Hrs/Week)
- Average Monthly Grant:
  - $1,300
- NJ Medicaid PCA Hourly Rates:
  - $14.50 Weekday, $16.00 Weekend
- 10% Administrative Deduction (covers FI & Counseling Cost)

Uses of Cash Grant
- Hire Relatives/Friends
- Hire Current Home Care Aide Privately
- Use Agency Services as Private Pay Customer
- Advertise and Hire Workers
- Applicants--Washers, Microwave Ovens, etc.
- Equipment--Comfort & convenience items
- Supplies--not covered by NJ Medicaid
- Purchase Services--Cleaning, Laundry, Errand
- Home Modifications
- Misc.--Taxi fare, out-of-pocket (not to exceed 10%)
- Insurance, Worker Benefits, Background Check

Challenges for New Jersey
- Reaching Target Audience
- Diversity
- Difficulty Finding Workers
- Lack of Consumer Experience
- Agency/Aide Sabotage

Calvin D.

Calvin is 44 years old, sustained a Brain Injury a number of years ago, has seizures and is visually impaired. He lives by himself in an apartment and is able to perform most activities of daily living independently.

Agency Service:
- Calvin was authorized for 9 hours of personal care service per week. Most of the service was intended to assist him with housekeeping and meal preparation.

Amount of Cash Grant:
- Calvin gets only $508.00 per month under the Personal Preference Program. Although his grant is small, Calvin has turned out to be a real "money manager."

Uses of Cash Grant:
- He hired a friend who works for him 9 hours a week and is getting paid $10.00 per hour. He allocates about $25.00 each month for taxi fare so he can do his own shopping and errands. The balance of his grant he has targeted for devices that can help him be more independent. He has already obtained a "talking watch" and a new telephone with extra large numbers. He is planning to buy a microwave oven when he has saved enough in the future. He used part of the grant for insurance for his workers.

Result:
- Calvin is much more independent than he was under the agency model. He has taken responsibility to budget his funds to make himself more self-sufficient.

Mr. & Mrs. R.

He is 94, deaf and has hypertension. His wife is 91 and has Parkinson's and has become confused and disoriented. They live with their daughter, who tries to work full time and also care for her parents at the same time. This family moved to the US from the Philippines.

Agency Service:
- Medicaid authorized 20 hours a week of personal care services for the husband and 40 hours for the wife. The PCA agency was only able to provide about 30 hours a week in total.

Amount of Cash Grant:
- The couple's cash grant is approximately $3,250 per month.

Uses of the Grant:
- The daughter serves as their "representative" in the Personal Preference Program. She hired a friend from the Philippines to come and work as a "live in" and she is paid for about 60 hours a week. Other family members have been hired as "back up" staff if needed. The couple is saving $330.00 per month to build a ramp and to modify a bathroom on the first floor.

Result:
- The daughter has been able to maintain her employment and the couple are receiving care from an individual who speaks their language and is familiar with their culture. The home modifications will allow the couple to make better use of their living space.

Mike L.

Mike L., age 40, sustained a Spinal Cord Injury as a result of a swimming accident while he was in his 20's and he is quadriplegic. He lives by himself in an apartment which his family made barrier-free for him after he returned home from the rehabilitation hospital. At present he is taking courses at a local college.

Agency Service:
- Mike was authorized for 25 hours of personal care service under Medicaid. He was not happy with the aides, most of whom were middle-aged women ("they remind me of my mother!") and frequently he got less than the authorized service. He acknowledges that this was his own fault because of his attitude. Also, because he needs lifting and transferring, many agency aides were not able to meet his needs.

Amount of Cash Grant:
- Mike's current grant is about $1,380 per month.

Uses of Cash Grant:
- Mike has hired three regular employees and one back up person and is currently getting 27 hours a week of care. He pays each of his workers $10.00 per hour which has helped to ensure reliability. He also uses grant funds for medical supplies (not covered by Medicaid) and uses $15.00 each month towards nonmedical transportation costs.

Preferences For Consumer-Directed Services Among Different Consumer Groups: Cash and Counseling Demonstration and Evaluation Early Findings

Lori Simon-Rusinowitz, PhD, Deputy Project Director
Kevin J. Mahoney, PhD, Project Director
University of Maryland Center on Aging

Presentation Purpose

Address preferences for consumer-directed services among different consumer groups
Consumer groups addressed:
- Younger/older consumers
- Different racial/ethnic groups
- Consumers with different levels of disability
- Consumers with cognitive disabilities
- Consumers with a relative/friend to hire as a paid worker

Cash and Counseling Demonstration and Evaluation (CCDE) Data Sources

CCDE Background Research

Determining Consumers' Preferences for a Cash Option: A Three-Part Study
- Part 1: Pre-survey Focus Group Discussions
- Part 2: Telephone Surveys
- Part 3: Post-Survey Focus Group Discussions

CCDE Research with Program Participants

Social marketing/outreach focus groups
Surveys of cash option consumers: Preliminary findings
Case studies of cash option consumers
Quality assurance study

Social Marketing/Outreach Focus Groups

Purpose: To develop outreach strategies to inform personal care consumers and their families about the cash option
Conducted with Florida Departments of Elder Affairs and Developmental Services
Elder Affairs focus group participants: 45 case managers, consultants, and supervisors in four focus groups, October 2000
Developmental Services focus group participants: 24 Family Care Council members, Independent Support Coordinators, and self-advocates in three focus groups, December 2000-March 2001
Conducted by University of Maryland Center on Aging

Case Studies of Arkansas Cash Option Consumer Team Triads

Purpose: to develop "stories" describing the experiences of 27 Arkansas cash option consumers and their relationships with team triad members
In-depth, in-person interviews with consumers, representatives when needed, paid workers, and counselors, March-June 2000
Conducted by University of Maryland, Baltimore County, Department of Sociology and Anthropology

Arkansas Quality Assurance Study

Purpose: To develop an approach to assuring high quality personal care services consistent with consumer-direction principles.
Focus groups with Arkansas cash option consumers, family members, and paid workers, April 2001
Conducted by Scripps Gerontology Center, Miami University

Older/Younger Consumers

CCDE Background Research

Telephone survey (n=2140):
- Interest in the cash option tends to decline with age; however, a high percentage of older consumers were interested.
- Interest peaked in the 30's-50's (about 60% of consumers), about 50% of consumers in the 60's, and about 30-40% of consumers in their 70's-90's were interested in the cash option.

Preference Study Focus Group Findings

Consistent with survey findings, focus group participants indicated various levels of interest in the cash option among younger and older consumers.
- Some consumers of all ages liked the idea of a consumer-directed cash option.
  
  "I think it would be great. WHY? Because I would have the control over who was going to come into my home, and what they were going to do and how they were going to do it." (FL Elder)
  
  "...you're in charge. You're the one that dictates what these people are going to do for your care." (FL Elder)
  
  "This is a great program. It's really good...it puts me in a position of not being beholden and not being under someone else's thumb." (NY Consumer <65)
- Some consumers of all ages disliked the idea of a cash option.
  
  "I think it would be best for us to keep our program like it is. They might not give you enough money to pay for this stuff. Then...you haven't got anything." (FL Elder)
  
  "Already we're dealing with our medication, we're dealing with our doctors, we're dealing with our families...this is just the worst." (NY Consumer <65)

CCDE Research with Program Participants

Preliminary findings show that 73% of 200 Arkansas Demonstration consumers are elderly and 54% of 231 New Jersey Demonstration consumers are elderly.
Case Studies of Arkansas Cash Option Consumer Team Triads:
- Ms. Gwen Fuller, a 69 year old, African-American woman, was able to leave a nursing home and move into her niece's apartment with her cash benefit.
- Her niece moved into a larger apartment and began a home-based business so her aunt could live with her.
- Ms. Fuller's niece is her representative and her grandniece is her paid worker.
- She is surrounded by family.
Social Marking/Outreach Focus Groups:
- Florida Department of Elder Affairs case managers overwhelmingly believe that older persons are not good candidates for the cash option.

Consumers from Different Racial/Ethnic Groups

CCDE Background Research

Telephone survey (n=2140):
- African-American respondents were 1.9 times as likely to be interested in the cash option, and Hispanic consumers were 1.6 times as likely to be interested in the option when compared to Caucasian respondents.
Preference study post-survey focus groups
- When focus group participants were asked why they thought African-American and Hispanic survey respondents showed greater interest in the cash option than Caucasians, consumers and surrogates in all four states cited similar reasons:
- The cultures of African-Americans and Hispanics tend to have strong family networks and emphasize caring for family members
  - ...they are more caring. They got that family value or something. When it comes to sticking together, mostly they are really tight. (NJ African-American Representative)
  - "We're very interested, and our families, we want to have them in our homes. (NJ Hispanic Representative)
- The ability to feel independent and in control would be a source of pride for African and Hispanic participants.
  - "And we've been dependent on the government so long. A program comes along like this, it seems like heaven. Yeah, right." (AR African-American Consumer)
- The cash option could bring much-needed jobs (as personal care workers) to African-Americans and Hispanics.
  - "It would be an income for someone else. ...some want to work and really need to work and can't get a job...So most likely, there are some young ladies out there who would be glad to sit with the elder person, to have an income..." (AR African-American Representative)

CCDE Research with Program Participants

Case Studies of Arkansas Cash Option Consumer Team Triads:
- Mrs. Cynthia Williams, an 85 year old African-American woman, lives with a daughter who is her paid worker.
- Another daughter is her representative.
- They describe their sense of family responsibility in caring for their mother:
- "It's basically a family thing. We just help Momma out. ...she provided for us and let herself go, and now is our time to try to help her as much as we can. ...I can remember times she made sure we had shoes and she was putting cardboard in the bottom of her shoes..."
Arkansas program experience: Arkansas participants are 64% Caucasian (1289/2008) and 33% African-American (667/2008), which is slightly higher enrollment among African-American consumers than expected from the racial composition of Arkansas personal care client population.

Consumers with Different Levels of Disability

CCDE Background Research

Telephone survey (n=2140):
- Consumers classified in the severe range of the ADL scale were 1.5 times as likely to be interested in the cash option as those in either mild or moderate categories of disability.
Preference study focus group findings:
- When asked to explain why consumers with more severe disabilities were more interested in the cash option, focus group participants offered poignant insights.
  - "The more disabled you are, the less disabled you want to be. If you can manage your own care in any degree of normalcy, it helps you to be like the rest of the world." (FL Consumer)
  - "...you have a say so in your life again. You have no control over your life." This way you're working your way up...It gives you a sense of independence that you are somebody, you're not just a number in a file cabinet somewhere. (FL Consumer)
  - ...when you're in a terminal type of disease and you're working real hard to still hold your dignity...to feel a certain amount of pride in yourself..." (FL Elder)

CCDE Research with Program Participants

Surveys of Arkansas Cash Option Consumers: Preliminary Findings
- For the first 200 cash option consumers, more than half reported being in poor health, most with chronic illnesses.
- Many have extreme difficulty with ADL's, leading more than 60% to have paid help with getting out of bed and 90% to have paid help with bathing.
- More than half needed paid help with eating and using the toilet.
Case Studies of Arkansas Cash Option Consumer Team Triads:
- Daniel Gentry, is a 20 year old young man with advanced muscular dystrophy.
- He has a high level of disability and "needs help with just about everything," including a ventilator for breathing and a feeding tube for eating.
- He is intellectually engaged and active in many projects.
- Daniel lives with parents; his mother is his paid worker.
- The cash option has allowed his mother to stop babysitting in their home, which put Daniel's health at risk from illnesses brought into the home.
- It allows her to provide his extensive, complicated care, which is very important as there are very few people with whom she would entrust his care.
- "The biggest thing I'm enjoying is to afford entertainment for him. I can rent him a DVD, I can rent him a movie, we can go to the movies, we can afford to put gas in the motor home to go camping again. The motor home sat there all of last summer...(because they couldn't afford gas)." "We try to have some fun everyday."

Consumers with Cognitive and Developmental Disabilities

CCDE Background Research

Telephone survey findings:
- Florida surrogates for children with developmental disabilities had the highest level of interest among all survey participants--79% (n=399) were interested in the cash option.
- Among Florida adults with developmental disabilities, 45% (n=378) of all consumers were interested in the cash option.
- When Florida surrogates for adults with developmental disabilities were asked about their own interest in the cash option, 45% (n=267) were interested.
- Surrogates' (for adults with developmental disabilities) interest in the cash option is highest among surrogates in their 40's, and decreases as the ages of consumers and surrogates increase. However, almost one half of surrogates in their 60's and over one-third of surrogates in 70's are interested.
Preference study focus group findings
- Of all the pre-survey groups, parents of children with developmental disabilities were by far the most enthusiastic about the cash program.
  - "There's no spontaneity in our lives whatsoever...it would give us much more freedom."
- Parents or representatives of older children with developmental disabilities were less interested in the cash option.
- They explained that parents became "burned out" and may not want to take on the additional responsibilities required by participation in the cash option.
  - "...parents get so fried by the time their kids reach nine, ten years of age, that they want somebody else to do everything..., because you fight with the schools, you fight with the doctors, you fight with the states." (FL Parent of Child with Developmental Disabilities)
- Older representatives were less interested in the program. They discussed retirement, lack of resources and support, and their own health issues as they age to explain this finding.
  - "It's a physical thing. As children get older, obviously we get older. ...you have to say, gee...Can I do this in ten years? Can I do it in five years? (FL Parent of Child with Developmental Disabilities)

CCDE Research with Program Participants

Florida Developmental Services social marketing/outreach focus groups
- When asked to help explain the survey finding that many older parents of adult children with developmental disabilities remain interested in the cash option as they aged, parents of children with developmental disabilities offered this insight.
  - Older parents see younger children as having much more opportunity today than their children had.
  - No matter how old the parents, they want more opportunity for their adult children now.
- A mother of a daughter with developmental disabilities reported "it's horrendous as far as getting providers and it's great to be able to know you can use your family members. You can use your family members. You can use your neighbors. You can use people from church."
- One mother of a son with developmental disabilities was able to visit Vietnam to see family as...she was able to get somebody that she trusted with her son.
Arkansas quality assurance focus groups
- A mother of a daughter with severe developmental disabilities defined quality/satisfaction with the cash option as being able to hire a close friend/nurse to care for daughter.
- This arrangement offers the mother respite. She can save hours to go on vacation with other family members, and her friend can care for her daughter.

Consumers with a family member/friend ready to hire

CCDE Background Research

Telephone survey findings (n=2140):
- When asked reasons for being interested in the cash option, 90-92% of consumers across four states reported that being able to hire your own worker, including a friend or relative, made them interested in this program.
Preference study focus group findings
- While most focus group participants agreed that the option of hiring relatives or friends as their personal care worker was a positive program feature, reactions were mixed about doing so.
- On the positive side:
- Consumers would be able to pay a friend or family member already helping them out with personal care needs.
  - "For once, your family member can actually help you and get paid..." (NJ African-American representative)
- Relatives would know better the special needs, likes and dislikes of the consumer for whom they are caring, and it enables the consumer to pay them for the work they do.
  
  "I'd rather trust someone in the family's that's capable." (NY Caucasian Representative)
  
  "I like the idea of friends and family, because they more or less know what I like and how I like it." (FL Caucasian Consumer)
  
  "...if I had the option to have a family member or a friend come in, it would be a blessing. Because at the same time there are family members who don't have a job and who know my needs and would be able to care for me." (NJ African-American Consumer)
- Hiring a relative or friend would enable consumers to hire someone of the same ethnicity, an important factor for African-Americans and Hispanics.
  
  "Hispanics know how to pick up a fruit or a vegetable...I prefer Hispanic, because of this aspect of it. Because Hispanics, you could say, buy me something, and they know." (NJ Hispanic Elder)
- However, others were more skeptical of hiring family and friends.
  
  "I don't think all family members would be as professional as you would hire someone out from an agency." (FL Elder)
  
  "Money and friends or family never mix." (NY Consumer)

CCDE Research with Program Participants

Cash Option Consumer surveys in Arkansas and New Jersey: Preliminary Findings
- Arkansas consumers almost always hired people they were already close to personally.
- Over three-fourths chose a family member, and another 15% opted for a friend, neighbor, or church member.
- Consumers reported high satisfaction levels with times of day they could get help (95%), the care arrangements they made, and their relationship with their hired worker (100%).
- Three-fourths of the 81 New Jersey clients who hired caregivers hired family members.
- 37% hired friends, neighbors, or church members.
- 27% hired a caregiver recommended by family or friends.
- 27% hired former home care agency workers.
- Case Studies of Arkansas Cash Option Consumer Team Triads:
  - Mrs. Pearl Rose, an 87 year old white woman, lives alone, has several daughters who live close by to provide 24 hour/day care.
  - She has several serious medical problems--she needs to be fed through a feeding tube, she has a blocked heart artery that is inoperable, and she requires breathing treatments four times/day.
  - She is never left alone, even at night.
  - The seriousness of Mrs. Rose's physical problems and the need for constant monitoring require a true sense of devotion on the part of her family.
  - Her daughters have taken care of her for two years as they did their late father.
  - As one daughter explained, "There are four girls and three husbands and it takes all of us and a cousin.
  - That way we take care of it, and we know that she is taken care of."

Conclusions

Conclusions about the Preferences of Different Consumer Groups for Consumer-Directed Services

While younger consumers are more interested in a consumer-directed cash option, many older consumers are interested.
The majority of consumers participating in Arkansas and New Jersey are elderly.
Preference study findings indicate that African-American and Hispanic consumers are more interested in a consumer-directed cash option than Caucasian consumers.
Experience in Arkansas indicates slightly higher enrollment among African-Americans than expected from the racial composition of the eligible Arkansas personal care client population.
Preference study findings and actual program experience indicate high levels of interest among consumers with severe disabilities.
Preference study findings and very initial program experience indicate high levels of interest among families of children and adults with developmental disabilities.
Preference study findings and actual program experience indicate high levels of interest among consumers with family members or friends available to hire as paid workers.

Program Implementation Recommendations

Cash option program features need to be flexible enough to include consumers of all types. Key cash option features that allow this flexibility include:
- representatives for consumers needing help with cash option tasks
- training to help consumers and representatives manage cash option tasks
- bookkeeping services (fiscal intermediary) to assist with payroll tasks
- consultants to help consumers and representatives manage the program and oversee cash management plans
- ability to hire family members/friends as paid workers
- help linking consumers and workers for consumers without family members/friends available as paid workers

Self Determination

Beth McArthur
Connecticut Department of Mental Retardation

What have we accomplished?

Self Determination/Individual Support for over 430 people
Funding of $10.5 million to support individuals
Opportunities for families to utilize the concept to support children and young adults
- 62 children under 18
- 118 young adults 18-25
- 42% of all participants are 25 or younger
Availability of 20 brokers to support individuals and their circles
- 3 additional brokers to be hired by June 30th
Comprehensive training for brokers, private sector and regional staff
Generated great interest among individuals and families
- FY 00/01 biennium added 151 people
- Over 60% of all new development was with Individual Support
Regional pilots for broker selection
Choose regional liaisons
Initiated cooperative ventures with private providers
- 46 traditional private providers support people
- 6 new providers support people
- Creative pilots to transition from traditional services
Established fiscal intermediaries -- individual choice
Created individual automated budgets
Provided people with the option of hiring staff or using providers
Amended the contracts to make money portable
Created a provider director

New Directions

Individual Support and Self Determination is the preferred approach and a new way of "doing business"
Waiting List Initiative: creates the concept of systemic individual funding that is to be self-directed
Expand the availability of brokers through redeployment and research of a parallel private sector model
Create the function of Self Determination Directors
Refine and standardize the concept of portable resources
Seek Medicaid reimbursement for Individual Support
Allow families to access the Connecticut Job Bank
Create individual budgets for all school graduates
Issue protocols for:
- Individual budget development
- Individual Support agreement development
- Individual planning
- Broker selection
- Fiscal Intermediary selection and contract employment management protocols

Remaining Challenges

Is Self Determination linked to the availability of new resources?
How will we have a significant impact on people who wish to leave group residential settings?
How will we develop and sustain circles?
What will we do for people in crisis?
How will we nurture and sustain brokers?
How will we keep person centered planning fresh?
How will we standardize and not overly bureaucratize our approach?
How will we not "drift" as a result of implementation pressures?
How will we utilize the principles for people at some level who live with others?

Self-Determination: The State of the Art in Supporting People with Development Disabilities in the U.S.

James W. Conroy, Ph.D.
Supported by The Robert Wood Johnson Foundation and Monadnock Developmental Services

The Professionals Who Created This Concept Wrote A Proposal

To the largest health care foundation on Earth:
The Robert Wood Johnson Foundation
(RWJ money came from the invention of the Band-Aid and other health products)
They won the grant
The first ever given in developmental disabilities field by that Foundation

The U.S. Had A Well Developed Community Service System in 1993, But Advocates Were Not Satisfied!

Overly restrictive
Overly regulatory
Overly costly
Failure to be flexible
Failure to individualize
Failure to support choice
Failure to support development

A Brief History

1993 Original Proposal to RWJF
1995 Statewide in New Hampshire
1996 RWJF Decision to go National
1997 Grants to 19 States
1998 10 More Planning Grants
1998 National Evaluation Begins
1998 10 More States Join With State Funds
1999 Michigan shows positive results

ROBERT WOOD JOHNSON FOUNDATION SELF DETERMINATION PROJECT PLAN IN THE 18 FUNDED STATES
State	Funding	Years	People
Arizona	200	2	24
Connecticut	200	2	125
Florida	100	2
Hawaii	400	3	125
Iowa	200	2	25
Kansas	400	3	185
Maryland	390	3
Massachusetts	100	2
Michigan	397	3	325
Minnesota	400	3	150
Ohio	395	3	400
Oregon	200	2.5	60
Pennsylvania	100	1.5	105
Texas	395	3	60
Utah	200	2	700
Vermont	400	3	250
Washington	100	1	40
Wisconsin	399	3	90
Totals	4,976		2,687

Sean

Just graduated from high school
Terrible car accident, fell into a coma
Sean's state did not have any nursing homes for head injury
Professionals sent Sean to another state's nursing home

Sean Lived in a Nursing Home

For 4 years
100 miles from his parents
He didn't get much individual attention
And he didn't improve
His care was costing $140,000 per year
No one was happy

Sean's Parents Asked:

Isn't there another way?
How much is all this costing government?
$140,000? Really? You're kidding, right?
If we had control of that money, we would do things very differently.

Local Authorities Asked:

Really? What would you do differently?
That nursing home is the only one around that specializes in head injury.
What could you non-professionals do for Sean?

Sean's Parents Said:

Buy a house (not expensive in Keene)
Adapt the house
Rent out the upstairs
We would hire a nurse to train others
His high school friends and neighbors to work as his attendants
And we would have him close to us
We would adapt a house for him
We would hire his high school friends to work as his attendants
We would hire nurses part time to oversee his care
And we would have him close to us

Local Government Thought This Just Might Make Sense

Courageous local leaders went to state and federal officials
Explained the situation
Asked permission to experiment with putting family in charge of how the money was spent
Courageous state and federal officials agreed to "look the other way" while regulations were being "bent"

Sean Came Home

Government dollars were used to buy a house
And to make it accessible
And to put in special bathroom and a lift
Friends were hired as attendants
They took Sean into town on outings
Family visited frequently, reading to Sean, talking in his presence, and touching him

Outcomes:

Total dollars spent, even with the down payment on the new home and the payments on the mortgage, went down below $70,000
(Even in the first year)
Even lower now
In 1996, Sean began to open his eyes and focus
In 1997, he began to speak
Most of us think that would not have happened in the nursing home--EVER

A Look at a Possible Future--What If:

Institutions were gone, or nearly gone?
And all children had the right to go to their neighborhood schools, no matter what their disabilities?
And most adults lived with relatives with in-home support of whatever kind needed?
And some adults lived in decent community group homes with 24 hour supervision?
But these homes were very, very expensive and people did not like them very much?

Excerpts From the Original Proposal, 1993

For people with severe long term and chronic conditions, specifically developmental disabilities, our service delivery practices are so outmoded, so disenfranchising, and so costly that radical departures must be demonstrated and evaluated immediately. We believe that on average many of these costs can be controlled and in many instances reduced for those in residential, day/employment services.

The Original Concept

Self Determination:
- If people gain control,
- Their lives will improve,
- And costs will decrease.

"If People Gain Control"

Meaning that focus people and their freely chosen allies gain power over life choices
Meaning that professional domination of all life choices diminishes
Meaning more participation in planning process from unpaid people
Meaning, most of all, that INDIVIDUAL BUDGETS are developed via "targeting"

Individual Budgeting

Right now, our systems only have "group budgets"
A facility budget, divided by the number of people
But if we look at what's being spent for a person, we can dream about other ways to use the money

"Their Lives Will Improve"

But we don't necessarily know how
It could be in many areas of quality of life
Or it could be in none
The proper strategy: we must measure as many things as we know we can do well, within resources
And we must collect the perceptions of the participants themselves

"And Costs Will Decrease"

Non-professional control of resources will permit more precise purchasing
Decreased reliance on "one size fits all" mentality
Lessening of "over-service"
Increased utilization of natural and community based supports
Some degree of escape from the traditional human services "vortex" of over-spending and over-controlling

Fear:

How could government possibly turn over power to families?
And to the people with mental disabilities?
Officials are naturally frightened of such a concept.

Elements of Self Determination

Support and encourage choicemaking
Control of resources
- Signoff on service provider invoices
Case managers--->>Personal agents
Person centered planning
De-professionalization
Training, untraining, and retraining

Roots of Self-Determination

Deinstitutionalization
Person-centered planning--O'Brien et al
Supported living, supported employment
Independent living movement
Civil rights movements
Family supports, family-driven
Self-advocacy

Self-Determination in New Hampshire, 1994-1996

45 People
3 years
All kinds of people with all kinds of support
Results began to show up after just 2 years
We studied how planning changed, who had power, how people liked the "new way," and how money was spent

Changes in the Planning Process

Change in the Composition of the Planning Teams:
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An Example of a Change in the Planning Process:

Who makes plans? Who's "in charge"?
"I thanked RWJ and self determination for giving back our lives. Because we lost our lives for those years that Josh was in an institution or a group home. We were just dictated to."
--Jackie - Josh's mother

The Decision Control Inventory: Shifting Power

The DCI Measure
How Decisions are Made in 26 Life Areas
- Examples: Who to live with, What food to buy, What clothes to wear, What to do with personal money, Time and frequency of bathing and/or showering.
- Scale: from 100% paid staff decisions to 100% person and/or unpaid loved ones.
Conservative Estimate of Reliability: .86

Outcomes re: Power:
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Power Shift

This is my place! I bought it! I needed it to be on one floor, and to have a place for my trains. And it does!
Public funds were used to buy a home for David, with Mom's help. That's a radical departure from American practices. An "investment" in David.

Participant Satisfaction and Perceived Quality of Life

Individual Interviews
Increased overall satisfaction ratings
- 7 point increase from Time-1 to Time-2
Perception of large improvements in qualities of life over the past year
- Statistically significant in 8 of 9 areas

Quality of Life Changes From "A Year Ago" to "Now":
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Mike--A Man Living in Michigan

Was living in a group home
Did not like it
"Behavior problems"
What do you like?
My own place.
Who do you like?
My twin sister.

Take the Same Money, And ...

Spend it differently
Mike's twin, Michelle
Wanted to support her brother
But she had to work to make money and have a home
With Mike's money, Michelle was "hired"
Public dollars are now being spent very differently!

Behavioral Development

Adaptive Behavior:
- There were no expectations.
Challenging Behavior:
- There were no expectations.
Productive Behavior:
- There were no expectations.

Behavior Changes From Time-1 to Time-2:
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Mary's Greatest Joy: Cars and Taking Drives

Mary now OWNS this car
Although she can neither drive nor speak
And her former Case Manager now works for her half time
Mary can now get out and go, go, go, whenever she wants to
"Behaviors" have vanished
Power has radically shifted away from professionals, and toward Mary and her most trusted ally

Additional Outcomes

Individualization - increased
Physical Quality - enhanced
Service hours per week - up, but NS
Number of goals in plan - down
Hours of day activities - up
Earnings - up, but NS

Costs, Expenditures, Resources

Could qualities of life be improved while resource utilization decreased?
Could increased individual and non-professional control result in lower resource utilization?
The results supported a clear conclusion.

Public Costs:
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Changes in Individual Costs MDS Self-Determination Project:
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NEW HAMPSHIRE'S SELF DETERMINATION PROJECT SUMMARY OF INDIVIDUAL OUTCOMES
Quality Dimension	Outcome
Self Determination Scale	Large +
Personal Satisfaction Scale from Interview	Large +
Quality of Life Improvement in Past Year	Large +
Relationships with Family	No Change
Relationships with Friends	No Change
Circles fo Friends, Number of Members	Large +
Integration, Outings	Some +
Planning Team, Proportion Invited	Large +
Planning Team, Proportion Unpaid	Large +
Adaptive Behavior	No Change
Challenging Behavior	Large +
Vocational Behavior	Large +
Individualized Practices in the Home	Large +
Physical Quality of the Home	Large +
Minutes of Direct Service Per Day	Some +
Hours of Day Program Activities Per Week	Large +
Earnings Per Week	Some +
Health and Health Care	No Change

Costs	12-15% Lower

Michigan Data: The Only Other Pre-Post Information So Far

Over 750 Time-1 (baseline) PLQs
Now 157 Time-2 PLQs in house
More coming
Matches in baseline data: 112

Where Did People Have A Lot of Power?:
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Where Did People Have Very Little Power?:
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The Top Ten Changes in Power:
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Choice in Context of Freedom

"I used to live in a group home. Every morning I was given a choice of hot or cold cereal. ..... I don't like cereal. Now I have my own place. The only food I have there is stuff I like."

ONE WISH IN 1994	ONE WISH IN 1996
None	More contact with family
None	Meet Garth Brooks, go to Disney world, walk
None	Enjoy better health
None	Friends
None	Hair
None	To go on a plane to FL to see sister, make more $
None	To always be happy and grow into independence
Ham sandwich	More friends
To be finished work	Motorcycle
To be sleeping	Ride a bike, go to Disney with Steve
Bill Clinton	To be healthy, to be safe and alive
Get out of house and go to Keene	(Accomplished)
Go to Disney World	(Accomplished)
To go to California	Would like to visit FL + CA
To live near my parents	Go horseback riding
Vacation in Florida	Good health
Have a brain	Want to have a little boy baby
Get away from Keene housing authority	To meet celebrities, to live in warm climate
Not to have a roommate	To live like royalty, a queen with loyal subjects
A friend	Go visit Maine someday, maybe have more money
That my father was still alive	I'd like to see Richard C.
To be married	To have Keene fully accessible, live in dream house

It's Not Always About Getting More Money

Sometimes, it's just a matter of spending it differently
Just as with institutions, the same money can be spent differently
And lives will improve
Even if you're flat broke, changing your thinking might lead to progress

Rapid Spread: Projects Now Under Way in 37 of our 50 States

Foundations gave 18 large, and 12 small grants to states
7 more states are using their own money
We are now tracking 2,400 people involved in Self-Determination in the U.S.
It's really "taking off"

The Most Critical Factor?
Current Theory: Courage

In the Words of Tolstoi:

"I sit on a man's back, choking him and making him carry me, and yet assure myself and others that I am very very sorry for him and wish to lighten his load by all possible means -- except by getting off his back."

Power Increased

People and their informal (unpaid) allies clearly increased power and control over life choices
But formal (paid) allies also reported perception of increased power
How could both groups increase power?
Was new power created out of thin air?

HANDOUTS

A Descriptive Analysis of Patterns of Informal and Formal Caregiving among Privately Insured and Non-Privately Insured Disabled Elders Living in the Community

LifePlans, Inc., and The Center for Health and Long-Term Care Research
April 1999

ABSTRACT

This research was designed to answer current questions surrounding long-term care insurance. It was also designed to provide basic sociodemographic and service utilization profiles for disabled private long-term care insurance policyholders, and to compare such data and findings to the experiences of non-insured disabled community-dwelling elders. Finally, the authors set out to discuss the implications of such findings on the service delivery system as well as on the design of private and public long-term care programs and policies. This was done by interviewing about 700 community-dwelling long-term care insurance claimants receiving benefits under their policies. Also interviewed were their informal caregivers.

The Executive Summary and Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm

A Right to Personal Assistance Services: "Most Integrated Setting Appropriate" Requirements and the Independent Living Model of Long-Term Care

Andrew I. Batavia
Reprinted from AMERICAN JOURNAL OF LAW & MEDICINE, Volume 27, Number 1, (2000): pp. 17-43
© 2000 by American Society of Law, Medicine & Ethics and the Boston University School of Law. All rights reserved.

INTRODUCTION

The United States is currently entering a period in which the demand for long-term care services is growing at a particularly rapid rate; it is projected that the inflation-adjusted expenditures for long-term care will double between 1993 and 2018. As the population continues to age and become more chronically ill and disabled, the need to expand our long-term care capacity, and the long-term care options available, has become self evident. The question is; HOW WE CAN MEET THIS NEED IN A COST-EFFECTIVE MANNER THAT IS SATISFACTORY TO THE CONSUMER OF SERVICES.

The population of people who need long-term care consists of people who, by virtue of their disabilities (i.e., functional limitations), require significant assistance in basic life activities. Kaye and associates estimate that about 16% of people over age 65 require assistance with their activities of daily living ("ADL"), such as bathing, dressing, and feeding oneself, and/or the instrumental activities of daily living ("IADL"), including household chores, handling money, and shopping. Among the working-age population (ages 18-64), the personal assistance rate rose by 35% during the 1980s to 2.7 percent in 1993. Because both the working-age and elderly disabled populations are growing rapidly, the number of people who require such services is increasing dramatically.

Most people who require long-term care services live in families with very limited income, and receive their personal care under the "informal support model," in which uncompensated services are provided by family members and friends. One study estimates that over 27 million people served as informal caregivers in 1997, providing the economic value of $196 billion in uncompensated services. Such caregivers often must forego economic and personal opportunities due to these responsibilities, and some develop health problems as a result of the physical and emotional burdens. Critics of the informal support model often say that it results in an unhealthy dependence of people with disabilities on family members, and resentment by the family members who are not able to pursue their interests.

The vast majority of funded long-term care services in this country are provided under the "medical model," in which health care workers provide services under the supervision of physicians and nurses. The largest sources of financing for U.S. long-term care are the federal Medicaid program and patient out-of-pocket spending, and the majority of such funding is spent on nursing home and home health services under the medical model. Due to the substantial financial burden imposed on patients who have too many assets to qualify for Medicaid but not enough to pay the enormous costs of institutional long-term care, many of these individuals impoverish themselves until they spend down sufficient assets to become Medicaid-eligible.

One long-term care option that is growing in popularity, particularly among working-age individuals with disabilities and chronic conditions, is consumer-directed personal assistance services under the independent living model of long-term care. Under this model, individuals receive services in their homes from one or more personal assistants who are not trained as health care workers or supervised by health care professionals. Typically, the consumer advertises for assistants in a local newspaper, interviews them, and informs them of the requirements and benefits of the position. The individual receiving the service is considered an autonomous, self-directed consumer (rather than a patient), who hires, trains, supervises and, if necessary, fires his or her personal assistant(s). This independent living model, which gives consumers substantial control over their personal assistance services, may be contrasted with the medical model and the informal support model in which others often control the timing and manner in which services are provided.

Despite significant benefits in terms of consumer autonomy, satisfaction, and improved health and function, the independent living model is not currently available to many individuals who prefer it. This model is used primarily by people with disabilities who are gainfully employed and who pay for the services out-of-pocket, as well as paralyzed veterans and some Medicaid recipients in states that permit payment for long-term care under this model. Most people with disabilities have no choice but to rely entirely on the informal support model or the medical model. In either case, they often have little control of the services upon which they depend.

One powerful legal requirement that is now being used by some individuals with disabilities to gain access to personal assistance services under the independent living model is that long-term care services must be provided in the "most integrated setting appropriate" to the needs of the consumer. This requirement is contained in three federal statutes that impact long-term care in this country--the Developmentally Disabled Assistance and Bill of Rights Act (DDABRA), section 504 of the Rehabilitation Act of 1973 ("the Rehabilitation Act"), and the Americans with Disabilities Act of 1990 (ADA). This article considers these most integrated setting statutory provisions, their interpretation in the Supreme Court decision of Olmstead v. L.C. ex rel. Zimring, and their use as levers for expanding access to consumer-directed long-term care services under the independent living model.

Section II of this article provides further information on the independent living model of long-term care relevant to analyzing how it is affected by most integrated setting requirements. Section III provides background on the Medicaid program and other sponsors of long-term care, including the Medicaid home and community-based waiver program authorized under section 1915(c) of the Social Security Act. Section IV discusses the relationships between the DDABRA, the Rehabilitation Act, and provision of long-term care in the most integrated setting appropriate. Section V considers the ADA and its most integrated setting requirement. Section VI analyzes the Olmstead decision, which has significant implications for long-term care and personal assistance services. Section VII applies the Olmstead decision to other circumstances involving long-term care, including the care of working-age people with physical disabilities who are on Medicaid. Finally, Section VIII presents conclusions on implications of the analysis concerning the independent living model.

This publication can be purchased from American Society of Law, Medicine & Ethics, 765 Commonwealth Avenue, Suite 1634, Boston, MA 02215, Tel: 617-262-4990, Fax: 617-437-7596, Web site: http://www.aslme.org/order

Attitudes Toward Government Policies That Assist Informal Caregivers: The Link Between Personal Troubles and Public Issues

Merril Silverstein, University of Southern California
Tonya M. Parrott, Quinnipiac University
Reprinted from RESEARCH ON AGING, Volume 23, Number 3, Pages 349-374, May 2001, © 2001 Sage Publications, Inc.

INTRODUCTION

With the aging of the population, families are increasingly likely to confront the caregiving needs of their older parents, grandparents, and other disabled relatives. This analysis uses national survey data to examine the preferences of Americans for public programs that directly assist caregivers in their activities. Respondents were asked whether they agreed or disagreed with the following three policies: directly paying caregivers, granting tax credits to caregivers, and requiring that employers grant time off without pay to caregivers. Although only one-third of respondents agreed with the idea of paying caregivers, more than 70 percent supported tax credits, and almost 60 percent supported time off to caregivers. Multiple regression reveals that current caregivers more strongly support all three policies, even when controlling for demographic factors, resources, values toward family responsibility, and political orientation. The results suggest that public policies that marshal informal services in support of dependent relatives will find greater favor because they enable the altruistic impulses of families to be fulfilled.

This publication can be purchased from Sage Publications, Inc., 2455 Teller Road, Thousand Oaks, CA 91320, Tel: 800-583-7243, Fax: 800-583-2665, E-Mail: info@sagepub.com, Web site: http://www.sagepub.com

Autonomy or Abandonment: Changing Perspectives on Delegation

Donna Wagner, Pamela Nadash and Charles Sabatino
July 1997

ABSTRACT

This document describes the highlights of the "Autonomy or Abandonment: Changing Perspectives on Delegation Symposium" and the findings of a state survey on delegation undertaken for the symposium. It also gives an overview of the legal and regulatory issues involved in delegation and provides a backdrop of the factors influencing our approach to delegation and in the country today. It is the hope of the staff of the National Institute on Consumer-Directed Long-Term Services and the Planning Committee for the symposium--representatives of stakeholder groups--that the reader finds this document a valuable resource for their own exploration of the increasingly important issues surrounding delegation and our common concern with enhancing the safety, independence, and autonomy of persons with long-term service needs.

The Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm

Cash and Counseling: Consumer's Early Experiences in Arkansas

Leslie Foster, Randall Brown, Barbara Carlson, Barbara Phillips and Jennifer Schore
October 2000

ABSTRACT

This paper describes the experiences of 194 early clients in the Arkansas Cash and Counseling Demonstration, IndependentChoices. The description is based on the clients’ responses to a telephone survey conducted about nine months after they applied to enter the program and were randomly assigned to the demonstration’s treatment group to receive a monthly cash allowance. After briefly describing the Arkansas project, data and methods used, and client characteristics, this paper discusses client outcomes in four areas: (1) program participation; (2) uses of services, goods, and cash; (3) hiring of caregivers and revision of cash expenditure plans; and (4) satisfaction.

Cash and Counseling: Early Experiences in Arkansas

Mathematica Policy Research, Inc.
Issue Brief: Trends in Consumer Choice, December 2000, Number 1

ABSTRACT

This brief is based on Mathematica's evaluation of Cash and Counseling, a three-state demonstration in' which Medicaid enrollees eligible for personal assistance services and other paid help around the home and community get a monthly cash allowance to purchase these services and related goods, instead of obtaining them through a home care agency. They also receive counseling to help plan their purchases. The three states included in the demonstration are Arkansas, Florida, and New Jersey.

The Full PDF Report available here, or can be ordered from Mathematica Policy Research, Inc., P.O. Box 2393 Princeton, NJ 08543-2393, Fax: 609-799-0005, E-mail: jallen@mathematica-mpr.com, Web site: http://www.mathematica-mpr.com. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report.

Consumer-Directed Models of Personal Care: Lessons from Medicaid

Pamela Doty, Judith Kasper and Simi Litvak
Reprinted from The Milbank Quarterly, Volume 74, Number 3, 1996

ABSTRACT

In this article, the authors compare and contrast alternative approaches to administering programs, financed under the Medicaid personal care services optional (PC Option) benefit, that make attendant services available to low income elderly and disabled persons in need of help with daily living tasks. The analyses address the following issues: (1) By how much do state Medicaid PC Option programs vary in terms of their administrative features that promote greater consumer choice and control or, conversely, in their emphasis on professional oversight and accountability? (2) To what extent have program administrators actively fostered consumer-directed care models? (3) What are the decisionmaking trade-offs in terms of Medicaid PC Option costs per hour of attendant service, coverage for high-need clients, perceived risks to quality, or other liability concerns associated with consumer direction versus professional management of attendant services? (4) To what extent do clients report having greater choice and control over attendant services in some states' Medicaid PC Option programs as compared to others? (5) Does greater client choice and control result in higher client satisfaction with attendant services?

Consumer-Directed Personal Assistance Services: Key Operational Issues for State CD-PAS Programs Using Intermediary Service Organizations

Susan A. Flanagan and Pamela S. Green
October 24, 1997

ABSTRACT

This final report provides practical advice to state program administrators regarding the implementation of consumer-directed personal assistance service (CD-PAS) programs and intermediary service organizations (ISOs). In particular, Chapters III, V, and VI, taken together, constitute an informal manual of advice from which state program administrators can design optimal CD-PAS programs using ISOs which are based on sound, regulatory principles and well-drafted contracts. Overall, this final report assists state program administrators in designing CD-PAS programs with ISOs that: (a) comply with applicable federal tax and labor laws; (b) make available supportive services that some consumers may want or need; and (c) allow for the application and enforcement of any limitation or restrictions on consumer direction that may be required by state laws and regulations.

The Executive Summary or Full PDF Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report.

Coordinated Invitation to Apply for "Systems Change Grants for Community Living": Improving Community Services for Children and Adults of Any Age Who Have a Disability or Long Term Illness

Health Care Financing Administration
CFDA No.93.779, May 17, 2001

EXECUTIVE SUMMARY

The Health Care Financing Administration (HCFA) is inviting proposals from States and others, in partnership with their disability and aging communities, to design and implement effective and enduring improvements in community long term support systems. These systemic changes will be designed to enable children and adults of any age who have a disability or long term illness to:

Live in the most integrated community setting appropriate to their individual support requirements and their preferences;
Exercise meaningful choices about their living environment, the providers of services they receive, the types of supports they use and the manner by which services are provided; and
Obtain quality services in a manner as consistent as possible with their community living preferences and priorities.

Four distinct grant solicitations comprise the "Systems Change for Community Living" grants that are the subject of this coordinated invitation. They are:

"Nursing Facility Transitions" grants: HCFA is making available between $10-$14 million to help States transition eligible individuals from nursing facilities to the community. Two types of grants are offered: State Program grants will be made to support State program initiatives; "Independent Living Partnership" grants will be made to selected Independent Living Centers (ILCs) to promote partnerships between ILCs and States to support nursing facility transitions.
"Community-integrated Personal Assistance Services and Supports" grants: Personal assistance is the most frequently used service that enables people with a disability or long term illness to live in the community. Grants totaling $5-$8 million are available to support States' efforts to improve personal assistance services that are consumer-directed or offer maximum individual control.
"Real Choice Systems Change" grants: The goal is to help design and implement effective and enduring improvements in community long term support systems to enable children and adults of any age who have a disability or long term illness to live and participate in their communities. Approximately $41-$43 million is available in direct grants to States.
"National Technical Assistance Exchange for Community Living" grant: This national technical assistance initiative will provide technical assistance, training, and information to States, consumers, families, and other agencies and organizations. Funding for the technical assistance will range from $4-$5 million.

Grant applications will be due in July 2001. We expect all grant awards to be made prior to October 1, 2001. States will have up to 36 months to expend these funds. Grantees are not required to provide a financial match, but a small non-financial recipient contribution from Grantees and/or a third-party "in-kind" contribution is required.

For more details and news about events relevant to these grant invitations, please periodically consult our web site at http://www.hcfa.gov/medicaid/systemschange.

Timetable
Milestone	Date	Content
"New Tools" Letter	January 10	This letter, addressed to State Medicaid Directors, was intended as an early alert to the new grant opportunities.
"Starter Grants"	Announced February 25; Deadline June 1, 2001	These non-competitive, $50,000 grants available to each State were intended to support consumer task forces, public-private partnerships, and initial planning for the "Systems Change" grants.
Grant Solicitations Issued	May
New Opportunities for Community Living: A Systems Change Conference	May 24 and May 25	This national conference is targeted towards States, consumers, providers, and advocates to share information and ideas on home and community based system initiatives.¹
Letter of Intent to Apply Due	June 8, 2001
Applicant's Teleconference	TBD	Additional information regarding registration for this teleconference will be posted on the HCFA web site at http://www.hcfa.gov/medicaid
Application Due Dates - Technical Assistance Exchange - Nursing Facility Transitions - Community PASS - Real Choice Systems Change	July 16 July 20 July 20 July 20
Grant Period Start Date	Prior to October 1, 2001
1. Information on this conference was previously distributed through the Home and Community Based Services Resource Network. For additional information go to: http://www.hcbs.org.

The Full PDF Report available at http://hcfa.gov/medicaid/systemschange/cfda93-779.pdf, or can be ordered from the HHS Centers for Medicare and Medicaid Services (formerly HCFA), Web site: http://hcfa.gov/medicaid/systemschange. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report.

GENERATIONS--Consumer Direction in Long-Term Care

Reprinted from the Quarterly Journal of the American Society on Aging
Volume 24, Number 3, Fall 2000

Full Journal "Introduction" and introductions/initial sections of each article are included below.

ARTICLES

Introduction

Over the past decade, researchers and policy makers have begun to pay increasing attention to consumer direction in long-term care. A number of factors, including aggressive advocacy on the part of younger people with disabilities, a growing consumer movement in health and long-term care, concerns about the costs of long-term-care services, and the recent shortage of frontline workers, have contributed to this heightened interest in consumer direction.

I have had a long-standing interest in consumer direction as a researcher and policy maker responsible for aging and long-term-care policy in the U.S. Department of Health and Human Services. I was, therefore, delighted when the Generations editorial board asked me to serve as guest editor for a special issue on this topic. The expert contributors to this issue reflect the broad range of policy, practice, and research perspectives that are critical to our understanding of how consumer direction in long-term care evolved, the opportunities, challenges, and limitations of this approach, and future directions for the financing and delivery of long-term care.

Defining Consumer Direction

As policy makers begin to explore the potential and pitfalls of consumer direction in long-term care, it is critical to provide a clear definition of the concept and to identify the parameters of this approach. Consumer direction in long-term care starts with the premise that individuals with long-term-care needs should be empowered to make decisions about the care they receive, including having primary control over the nature of the services and who, when, and how the services are delivered. Consumer direction also assumes that long-term care is predominantly nonmedical, focused on primarily low-tech services and supports that allow individuals with disabilities to function as independently as possible. Thus, the consumer should not be forced to rely on professionals to make key decisions about care and to be "managed" by a formal system.

Consumer direction is not one strategy. It reflects a continuum of approaches based on the level of decision making, control, and autonomy allowed in a particular situation. The cash model is at one end of the consumer-direction continuum. This approach assumes that people know what they need and how to purchase it. Cash benefits tied to level of need or some other criterion provide the long-term-care consumer with the greatest flexibility in using resources to meet particular needs. The consumer decides how to best use the dollars, including purchasing services from a formal vendor, hiring a next-door neighbor to help with activities of daily living, purchasing some type of assistive technology to enhance independence, or modifying the person's own home to make it possible to remain in the community.

Professionally managed service packages are at the other end of the consumer-direction continuum. Most publicly funded home- and community-based care programs, in which beneficiaries have access to a set of prescribed services, fall into this category. Typically, a professional care manager develops a care plan tailored to the needs of a particular client. Even within this approach, however, there is the potential for consumer direction. The extent of consumer direction is determined by the degree to which the client is proactive in the development and ongoing implementation of the care plan and has some control over other decisions related to service delivery.

Approaches reflecting increasing levels of consumer direction lie between these two extremes. Within some programs with service packages, clients have the discretion to hire and fire their own workers and to decide how and when services will be provided. Some programs allow individuals to hire family members as caregivers. Voucher programs fall short of allowing full client discretion through a true cash model, but within some constraints they do afford long-term-care consumers great flexibility in how and where benefits can be used.

To date, researchers and policy makers have considered consumer direction primarily within the context of homecare. In theory, the cash model provides the consumer with the discretion to purchase services in any setting. In reality, the amount of available dollars limits the purchase of facility-based care. At the same time, it would be a mistake to dismiss the potential of consumer direction in congregate settings. The underlying philosophy of assisted living, for example, requires that the resident have significant decision-making authority. Even in the nursing home, it is possible to provide residents with the opportunity to direct their care.

In defining consumer direction, it is important to note that this concept is related to but is not synonymous with consumer choice. With the advent of managed care and Medicare offering (at least in theory) a range of plans as well as a fee-for-service option, the elderly and younger disabled are facing more choices in how they receive their healthcare. Individuals also have choices in long-term care, although the costs of options such as assisted living or intensive homecare may limit accessibility for low- and moderate-income people and their families. Consumer direction, however, focuses more specifically on the degree to which people are proactive in making the decisions about care, including the hiring and firing of workers and the management and oversight of services. It is most appropriate for meeting nonmedical, personal care and other daily living needs that do not require the training, expertise, and judgment of professionals. Furthermore, because long-term care involves the quality of housing and other living arrangements as well as services, consumer direction has the potential for providing flexibility in the ways these needs can be met.

Policy Environment

Consumer-directed approaches to providing long-term care have gained prominence at both the federal and state levels over the past decade. There is, however, much ambivalence toward this concept, particularly the cash option and models that allow care recipients to pay family and friends as formal caregivers. Americans and their policy-making representatives in Washington and across the states embrace a consumer-directed approach when it is presented in the form of a tax deduction or credit for the purchase of private long-term-care insurance or a tax credit to the care recipient or informal caregiver for direct services purchased privately. Using private mechanisms such as the tax code puts dollars in the pockets of individuals and their families and allows them to use broad discretion in how these funds are used. This private form of consumer direction resonates with the rugged individualism of American capitalism and the public's desire to make their own choices with minimal government interference.

On the other hand, when it comes to public programs and public dollars, there is evidence that the "deserving" and "undeserving" are treated differently. Policy makers, who ostensibly reflect the public's view, have no qualms about allowing individuals to exercise full discretion in how they purchase long-term care in the private sector. They are eager, in fact, to reward them through tax breaks and other financial incentives. The guardians of public long-term-care programs, however, are reluctant to offer consumer-directed options to low-income clients. There is tremendous concern about fraud and abuse, particularly where cash might be offered in lieu of a defined service package. It is assumed that at least a proportion of these individuals and their families would either use the funds for non-long-term-care purchases or would be incapable of making prudent decisions. Many policy makers also express grave concerns about paying family members for services that they should be providing for "free." In addition, much of the opposition to consumer direction emerges from concerns about lack of accountability and the inability to adequately protect long-term-care consumers from physical and emotional harm.

It is interesting to note that many Western European countries have pursued consumer-directed long-term care in the public sector through options ranging from caregiver and disability allowances to cash benefit programs based on social insurance. Concerns about fraud and abuse and accountability have not emerged as major deterrents to implementation in these other industrialized societies.

Despite serious reservation, many state policy-makers in the United States are finding consumer direction increasingly appealing for two reasons. First, there is the potential for cost savings. Most programs with a cash option, for example, discount the actual amount paid to the clients relative to the cost of a comparable service package. Savings are also realized through the reduction in administrative costs that would have been accrued in managing a service-package program. Policy makers are also interested in exploring consumer direction because of the growing shortage of frontline workers to deliver long-term care across all settings. Consumer-directed approaches afford much more flexibility in hiring workers (including relatives and friends), thus expanding the potential pool of caregivers. Finally, policy makers are interested in developing programs that address the preferences of their constituents. Consumer-directed long-term care is viewed as a way to empower consumers, affording them more choice and an increased role in making the decisions that directly affect them.

In This Issue

This issue of Generations provides a broad overview of consumer direction in long-term care, reflecting a range of perspectives from diverse stakeholders. Nancy Eustis sets the context for understanding the development of this approach by providing a brief history of this concept. She describes the evolution of consumer direction from its roots in the independent living and self-determination movements catalyzed by younger people with physical and developmental disabilities. She also highlights the ambivalence of the aging advocacy community toward this model but notes that elements of consumer direction have increasingly been present in aging services (e.g., control and autonomy, self-care).

Marshall Kapp notes that the current paradigm shift toward more consumer choice and control regarding the details of home health and personal assistance services implicates a variety of emerging legal issues. His article pays particular attention to the law's likely impact on quality assurance, consumers' rights, and workers' interests under long-term-care delivery and financing models that emphasize consumer direction. He argues that a movement away from extensive command and control regulation toward more emphasis on the role of consumer direction in a competitive long-term-care marketplace does not reduce the importance of the law in delineating and enforcing rights and responsibilities in this arena.

Pam Doty provides important insights into the federal policy perspective on consumer direction in long-term care. She uses her agency's leadership role in developing the Cash and Counseling Demonstration to illustrate how federal interest in this approach evolved over time and to identify some of the key barriers to adoption of this model. Linda Velgouse and Virginia Dize summarize the findings from their survey of state administrators on consumer-directed home- and community-based services. They also describe the development of a self-assessment tool by the National Association of State Units on Aging. As of this writing, ten states have volunteered to use this tool, which includes six broad categories of consumer direction "benchmarks."

Complementing this overview of state consumer-direction initiatives, Lori Simon-Rusinowitz and colleagues present findings from telephone interviews conducted with policy experts from the aging and disability communities. Kevin Mahoney, Kristin Simone, and Lori Simon-Rusinowitz highlight early implementation lessons from the Cash and Counseling Demonstration and Evaluation (ccde), a multistate project funded by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services. ccde offers Medicaid Personal Assistance Services (pas) users, elderly and younger people with disabilities, a cash allowance and support services as an alternative to traditional agency-delivered pas services. As these researchers note, this large-scale demonstration provides a unique opportunity to assess the best approaches to developing an outreach and enrollment strategy, counseling and fiscal intermediary programs, and a system for quality monitoring.

Lynn Friss Feinberg and Claudia Ellano highlight California's Caregiver Resource Center as a model for promoting consumer direction in an agency-driven program for family caregiver support. They note that consumer direction poses challenges to traditional assumptions held by many practitioners who consider that professional intervention is not only appropriate, but required, based on the client's disability, age, or functional status.

Marisa Scala and Tom Nerney underscore the fact that it is people who are at the heart of the movements toward consumer direction and self-determination. These authors discuss four populations that have been involved in the struggle for consumer direction: older adults, younger adults with physical disabilities, people with developmental disabilities, and those with cognitive disabilities.

Mary Ann Wilner discusses the implications of consumer-direction for the frontline worker--the homecare aide or personal-care attendant who is employed directly by the consumer or the consumer's family. She outlines both the advantages and disadvantages of this model for the paraprofessional worker, including the opportunity for more autonomy and control, but also the potential for exploitation and abuse. In this article, Wilner describes the tensions between the needs and preferences of consumers and workers and reviews the role of mechanisms such as fiscal intermediaries, registries, unions, and public authorities in balancing the needs of the care recipient and the caregiver.

Scott Miyake Geron presents an approach to assuring quality of consumer-directed long-term-care programs that is based on the views of consumers and other consumer-derived quality measures as well as more traditional approaches. He discusses the failure of traditional approaches to assuring quality and notes that consumers define quality differently from professionals and other stakeholders. He also outlines the principal challenges to assuring quality.

Aging is a global phenomenon, and we have a lot to learn from the experiences of other countries that have implemented consumer-directed policies and programs to finance and deliver long-term care. Jane Tilly, Joshua Wiener, and Alison Cuellar analyze the experiences of Germany, Austria, the Netherlands, and France and compare them with selected U.S. programs in California, Colorado, Kansas, Maine, Michigan, Oregon, Washington, and Wisconsin. Based on interviews with researchers and key stakeholders in each country and state and an extensive review of the literature, these authors describe the range of program designs, highlight the experiences of beneficiaries, their family caregivers, and their workers, and review emerging issues related to quality of services and the potential for cost containment.

To help readers understand the potential and pitfalls of consumer-directed long-term care in the real world, this issue showcases a number of programs that have implemented elements of this model. Ted Benjamin and Ruth Matthias briefly summarize findings from their study of California's In-Home Supportive Services program, which is large and well established and offers both agency and consumer-directed services. In the latter mode, the state delegates all responsibilities for recruiting, hiring, training, and supervising their worker to the client, with direct state payment to workers for certified hours of care delivered. Sue Flanagan and Pamela Green describe three fiscal intermediary models that are used to help facilitate consumer direction.

Diane Wong describes a rapid-response worker replacement program being implemented by the public authority operating in Alameda County, California. This function is key to enabling individuals to maintain their selected homecare workers and to avoid unnecessary 911 calls or institutionalization and escalating urgent situations. Kathy Dwyer describes the American Indian Choices Project, which is a self-directed method for developing aging program changes that are consistent with the Americans with Disabilities Act and that are respectful of tribal culture and sovereignty. Ruth Rothbart Mayer, Jean Marks, and Ann Berson describe a consumer-directed assistance program for people with cognitive impairment in New York City.

Conclusion

Consumer-direction in long-term care has become part of the lexicon among state and some federal policy-makers. This approach to financing and delivering long-term care was the focus of much attention at the most recent annual National Conference on Home and Community-Based Services. Policy makers, program directors, and researchers struggled with definitions of this concept and how it is being operationalized in programs serving a diversity of people with disabilities. They debated the advantages and disadvantages of this approach and articulated their concerns about consumer and worker protection, quality of care, and accountability. Clearly, consumer direction is not an option for all people with long-term-care needs, but it may prove to be an effective and efficient way to allocate precious resources to an important subset of this population. Although little empirical research has tested the perspectives of stakeholders who support or oppose this model, forthcoming findings from the Cash and Counseling Demonstration and other studies as well as the implementation experiences of ongoing programs may help guide the direction and magnitude of this emerging trend.

A Consumer-Directed Homecare Program that Works for the Cognitively Impaired

(INTRO ONLY)

In 1997, the New York City Chapter of the Alzheimer's Association received a three-year grant from the Robert Wood Johnson Foundation to investigate areas of concern and issues facing those caring for an individual with cognitive impairment within consumer-directed homecare. The overall goal of the program was to demonstrate that consumer-directed care is a suitable care option for people with Alzheimer's disease and their designated caregivers. Although a great deal is understood about consumer-directed homecare for people with physical disabilities, little knowledge exists about the needs of the cognitively impaired individual. The project hoped to address this knowledge gap.

This publication can be purchased from American Society on Aging, 833 Market Street, Suite 511, San Francisco, CA 94103-1824, Tel: 800-537-9728, Fax: 415-974-0300, E-mail: info@asaging.org, Web site: www.generationsjournal.org

A Review of State Initiatives in Consumer-Directed Long-Term Care

(INTRO ONLY)

Starting with the independent living movement of the seventies, consumer direction has gained momentum among consumers, providers, state administrators, and policy makers. The advantages of consumer direction, which include increased satisfaction and quality of life for consumers, are become widely accepted. But while the number of state initiatives and consumer-directed programs has increased, they continue to be a small part of the long-term-care service system, and they remain varied in size, services offered, populations served, and the degree of control provided to consumers.

The differences among programs result at least partially from the range of options encompassed by consumer direction. By definition, consumer direction includes a continuum that ranges from consumers having a role in developing their plan of care to having complete control over services, choice of providers, and payment for services. Differences also stem from the varied levels of commitment and understanding by those who must implement these new programs and from the barriers to consumer direction inherent in the long-term-care service system. These barriers are primarily programmatic, regulatory, and attitudinal--the last of which is most common in aging services.

The National Council on the Aging (NCOA), a national membership organization, is among those who have worked to advance consumer direction. NCOA has developed a definition of consumer direction and criteria for assessing the level of consumer direction offered by programs, collected information on consumer-directed programs, and managed research and demonstration projects. This article reports on NCOA's two most recent efforts to advance consumer direction: findings from the Survey of State Administrators on Consumer-Directed Home and Community-Based Services, and the state initiatives affiliated with the Independent Choices Program.

Comparing Consumer- and Agency-Directed Models: California's In-Home Supportive Services Program

(INTRO ONLY)

Until recently, there has been little research to inform the debate about expanding consumer direction to the elderly and other populations with supportive services needs. Most paid supportive services at home are provided by homecare agencies. Critics of this agency approach argue that clients themselves should be organizing and directing their own home-based services, which are personal and mostly nonmedical and thus amenable to individualized design. This article describes a study funded by the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services that was designed to examine the experiences of clients and providers under different supportive-service arrangements in the home. The study compares service experiences and outcomes for clients in a traditional homecare-agency model with those in a consumer-directed model. The locus of the study is California's In-Home Supportive Services (IHSS) program, a large and well-established program that offers both agency-based and consumer-directed services.

Consumer Direction in Long-Term Care: A Taxonomy of Legal Issues

(INTRO ONLY)

The activities of home health agencies are highly regulated, primarily for the purposes of assuring that the quality of services the agencies provide meets defined minimum levels and protects the rights and interests of service consumers and agency employees. This regulation takes a panoply of forms, including the following: state licensure of agencies and the individual professionals whom agencies employ or with whom they contract; federal Medicare and Medicaid Conditions of Participation, 42 C.F.R. Part 484 and 42 C.F.R. § 440.70(d); peer review organization assessment of compliance with professionally recognized standards of care; tort litigation seeking financial recovery for alleged injury directly caused by professional malpractice; and antifraud and abuse, antitrust, and other laws attempting to control the amount and propriety of financial payments made to home health agencies.

As described in this issue of Generations, various alternative models are evolving in the United States (and elsewhere) seeking to maximize the extent of consumer involvement in formulating and implementing publicly funded long-term-care plans. Under these models, the consumer (or the consumer's surrogate decision maker) may choose to purchase specific healthcare components of an individualized service plan from formal home health agencies or may utilize independent service providers to satisfy healthcare or personal-care needs.

The paradigm shift away from the traditional, highly regulated agency model of publicly supported long-term care toward delivery and financing models within which the consumer is empowered to control the who, what, where, when, and how details of the service plan creates new sets of relationships and raises many new legal concerns about the respective rights and responsibilities of the parties to those relationships. This article presents a brief taxonomy of some of the most salient of these evolving issues.

Consumer-Directed Home- and Community-Based Services Program in Five Countries: Policy Issues for Older People and Government

(INTRO ONLY)

A major innovation in long-term care for older people in the United States and Europe is the development of consumer-directed homecare programs. With government funds, these programs give consumers, rather than homecare agencies, control over who provides services and how these services are delivered. Typically, consumer-directed programs allow the consumer to hire, train, supervise, and fire the homecare worker. In some programs, beneficiaries receive cash payments enabling them to purchase the services they want. In contrast, traditional homecare programs rely on public or private agencies to supply and supervise the workers who serve program beneficiaries.

The empowerment philosophy undergirding consumer-directed homecare has been slow to take hold among programs serving older people because of concerns about whether older people either want to direct or are capable of directing their own services. How to assure quality of care without agency oversight and accountability also has been a major concern.

This article analyzes the development, design, and experience of consumer-directed homecare programs in Austria, Germany, France, the Netherlands, and the United States. The U.S. states included in this study are California, Colorado, Kansas, Maine, Michigan, Oregon, Washington, and Wisconsin. In all of these countries or states, older people can and do participate in consumer-directed programs.

Information for this article comes from two sources. First, we review available quantitative research on program outcomes for beneficiaries, their caregivers, workers, and quality of services from each country. The French and Dutch studies report on demonstration projects that preceded implementation of national programs. Two other Dutch studies surveyed beneficiaries and workers about their experiences several years after implementation of the new national program. Similar surveys of program beneficiaries come from Austria, Germany, and the United States.

Second, we conducted interviews with representatives of government, beneficiaries, unions, and homecare agencies in each country. In total, forty-seven sets of interviews were conducted with government officials and key stakeholders: fourteen with government officials, ten with advocates for younger people with disabilities, six with advocates for older people, ten with homecare agency association staff, and seven with union officials. We asked the people interviewed to share their views of how consumer-directed programs worked in their countries or states.

Consumer-Directed Long-Term-Care Services: Evolving Perspectives and Alliances

(INTRO ONLY)

Young adults with physical disabilities, people of all ages with cognitive impairments, and older people with functional impairments share many of the same needs for services and adaptations. However, the professionals and advocates that have traditionally been aligned with each of these groups have different histories and styles of addressing those needs. They typically differ regarding what they mean when they refer to "consumer direction" and how consumer-directed services should be implemented. For purposes of this essay, consumer direction is defined as choice of services and provider as well as control over how services are provided.

Culturally Appropriate Consumer-Directed Care: The American Indian Choices Project

(INTRO ONLY)

In healthcare and long-term care, American-Indian elders may be among the most neglected and underserved populations in the United States. They face the same health-related problems as the general population, but for them these problems are often magnified by such factors as a longstanding lack of tribal health services--particularly in remote locations--cultural tensions, and lack of information. Of the 2.41 million American Indians, nearly 170,000 are 55 years of age and older. Most do live in remote areas, on one of approximately 275 tribal land areas with populations of less than 10,000 people.

Many have had little formal education, and most live well below the poverty level. According to a recent report by the National Indian Council on Aging, Social Security constitutes the only source of income for 30.2 percent of American Indian elders. Moreover, many elders speak English only as a second language, if at all. This, plus a basic distrust of nontribal agencies and professionals, based on a history of broken promises and treaties, causes many elders to avoid seeking basic services to which they are entitled.

Early Lessons from the Cash and Counseling Demonstration and Evaluation

(INTRO ONLY)

Today, in most states, whether you are an elderly individual or a younger person with disabilities, if you are covered by Medicaid and need assistance to perform major activities of daily living like bathing, dressing, using the toilet, transferring from one place to another, or eating, you will not have much say over who helps you or when they come--never mind what they actually do. For years, people with disabilities have been saying, "If I had more control over my services, my quality of life would improve, and I could meet my needs for the same amount of money or less." The project described in this article is, at its heart, a policy-driven evaluation of this conviction. The Cash and Counseling Demonstration and Evaluation, funded by the Robert Wood Johnson Foundation (RWFJ) and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services, provides a test of one of the most unfettered forms of consumer direction, offering consumers a cash allowance in lieu of agency-delivered services.

Fiscal Intermediaries: Reducing the Burden of Consumer-Directed Support

(INTRO ONLY)

Consumer-directed modes of financing and delivering home- and community-based support services permit consumers--as opposed to medical or social work professionals--to exercise greater control over the services they receive. These modes allow consumers a broader choice of the providers who can render these services and afford the option of being the employer of record of their support service workers. The programs are popular with consumers, and the number of states that have implemented them has grown significantly over the past decade. However, with increased choice and control come increased responsibilities arising from a myriad of state and federal statutes and regulations governing the employer-employee relationship. As the employer of record in many of these programs, the consumer may be responsible for a broad range of tasks, including (1) recruiting, hiring, and training service workers, (2) defining workers' duties and work schedules, (3) supervising workers as to how specific tasks are to be performed, (4) managing payroll, and (5) disciplining and discharging workers as necessary.

Consumers enrolled in consumer-directed support service programs report that managing employment taxes and preparing and issuing payroll checks is one of the most daunting tasks they perform as employer of record and is the task with which they would most like assistance. Initially, state program administrators and consumers attempted to reduce the employer-related burdens associated with these programs by classifying support service workers as independent contractors. This approach failed because the Internal Revenue Service and the U.S. Department of Labor view most support service workers as household employees. The employer of such workers must pay them and report employment and other taxes associated with such employment in accordance with IRS and Department of Labor rules and regulations. Because of these difficulties, fiscal intermediaries of various kinds have emerged in the marketplace over the past decade to assist individuals enrolled in consumer-directed support service programs.

Implementation Issues for Consumer-Directed Programs: A Survey of Policy Experts

(INTRO ONLY)

The aging community's approach to homecare services has been changing during the past decade. While many long-term services for older people remain traditional in nature (i.e., arranged for consumers by professionals with minimal consumer input), an increasing number of community providers and consumers of long-term care support more consumer control and choice within service delivery. This consumer-directed approach to providing homecare services has been spearheaded by the disability community, which refers to these services as personal assistance services.

While many older people might benefit from consumer-directed services, researchers have limited knowledge about implementing such programs for elders. Researchers have only recently begun to address such questions as how many older consumers would prefer consumer-directed services and what consumer characteristics would lead to a choice for more autonomy. These researchers surveyed personal-care consumers to determine their preferences for "cash and counseling," a consumer-directed option that offers a cash allowance and information services to people with disabilities. The cash allowance enables consumers to purchase needed services and products that help maintain their independence. The survey showed that a sizable number of older consumers were interested in this consumer-directed choice, although interest was higher among younger consumers.

As interest in consumer-directed services grows, many additional questions need answers regarding how to adapt a consumer-directed approach to homecare services for older people. This article presents findings from telephone interviews conducted with twenty policy experts from the aging and disability communities. The purpose of the study was to assess implementation issues that arise when adopting a consumer-directed approach to aging services and to inform the design of the Cash and Counseling Demonstration and Evaluation (CCDE), an ongoing demonstration of a consumer-directed program offering a cash benefit (see Mahoney, Simone, and Simon-Rusinowitz, this issue, for a detailed description of the project).

Our research questions attempted to assess interest in adopting a consumer-directed approach to service delivery for the elderly community and to address implementation issues as they relate to consumers, providers, payers, and policy makers. We asked policy experts to address several issues: Do older consumers desire this type of service, and are their wants and needs different from those of their younger counterparts? If so, how? Do older consumers want to become employers of their personal attendants, charged with the responsibilities of hiring, training, managing, and paying their employees? Are these preferences related to age or other consumer characteristics (e.g., degree and type of disability)? How can consumer-directed programs balance the sometimes conflicting goals of maximum consumer independence, quality assurance, and accountability for public funds? How do providers accustomed to being in charge make a shift to consumer direction? In order to facilitate future innovations in healthcare, it is important to examine the key issues in introducing consumer-directed principles into healthcare programs for the aging and disability communities.

The following sections summarize the experts' views about implementing consumer-directed programs and barriers to implementation from four perspectives: those of consumers, providers, payers, and policy makers. We conducted twenty in-depth telephone interviews (averaging seventy-six minutes in length) with policy experts from the aging and disability communities, including program administrators and leaders in home- and community-based services. Their affiliations included universities, federal and state government, non-university research settings, national associations, private consultants, a private foundation, and a health insurance company. The interviews took place over a period of one year, from September 1996 through August 1997.

People First: The Consumers in Consumer Direction

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Much of the discussion of consumer direction and self-determination focuses on issues, models, and policies. Consumer direction as a philosophy emphasizes consumers' capacity to "assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services they receive." As a practice, consumer-direction consists of consumers making decisions and managing delivery of long-term-care services. Self-determination represents a much broader concept related to individuals' overall control of their lives and ability to participate fully in society and rests on four basic principles: (1) freedom to exercise the same rights as other citizens, (2) authority to control the funding needed for services and support, (3) support through the organization of resources as determined by the person with the disability, and (4) responsibility to use public dollars wisely.

However, at the heart of the movements toward consumer direction and self-determination are, of course, people--the individuals with disabilities who are directing and receiving services and support. In this article, we will discuss four populations that have been involved in the struggle toward consumer direction: older adults, younger adults with physical disabilities, people with developmental disabilities, and those with cognitive disabilities. We will focus on the history of each group in the area of consumer direction, strategies, and supports needed to enhance consumer direction in each community, and special issues to consider for each population.

Promoting Consumer Direction for Family Caregiver Support: An Agency-Driven Model

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You probably know someone like Judy Smith, She is 53, married, has two teenage children at home, and has a career as an architect. A year ago, her widowed mother moved into her home after being diagnosed with Parkinson's disease and dementia. At that time, Judy was forced to give up a challenging project in her firm because it would have required her to travel three days a month. Since her mother needed constant care, Judy was no longer able to attend business meetings at night; her days and nights were very demanding and stressful for her and her family because of her caregiving role. She was becoming increasingly exhausted and took an unpaid leave of absence from her job, resulting in considerable financial hardship to her family. Her mother's physician suggested that Judy consider placing her mother in a nursing home--not what she or her mother wanted. The prospect was heartwrenching and an economic nightmare. Fortunately, a friend told her about a Caregiver Resource Center in her community. Over the next four months, the center's family consultant provided Judy with information about the course of the disease and behavior management strategies, arranged for a family meeting to discuss care options, set up a legal consultation with an attorney to consider powers of attorney and other legal matters, held six counseling sessions with Judy to deal with her frustration, confusion, and sense of loss, and offered her several respite care options to consider. Judy elected respite assistance whereby financial support from the Caregiver Resource Center enabled her mother to attend an adult daycare program four days a week. A family friend provided respite relief on Fridays. With this support and respite assistance, Judy was able to return to work and continue caring for her mother at home. She now has more knowledge about Parkinson's disease and dementia, feels more confident in her caregiving role, is better able to deal with her mother's behavioral and functional problems, and is grateful for the respite relief and financial assistance to offset the costs of care. She keeps in touch with the center's family consultant as problems arise or decisions need to be made.

Rapid Response: Development of a Homecare Worker Replacement Service

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Mrs. Y is a 72-year-old woman who lives alone and has limited vision because of her diabetes. One morning Mrs. Y's regularly scheduled homecare worker does not arrive. Mrs. Y becomes concerned because she requires meals and snacks at specific times, and she has not been bathed in a few days. Mrs. Y calls Rapid Response, and a homecare worker arrives within one hour. She discusses with Mrs. Y the tasks that need to be accomplished and proceeds to prepare Mrs. Y's meals, assists with bathing, and picks up needed groceries.

Ms. K has an amputated right leg, the result of an accident. She now lives with a roommate. At 4 a.m., Ms. K attempts to go to the bathroom but becomes trapped between her bed rails. Her roommate is unable to free her, so calls Rapid Response. A Rapid Response homecare worker works with Ms. K and the roommate to free Ms. K from the bed. After calming Ms. K, the homecare worker proceeds to provide personal care, changes the bedding, and does the laundry.

The Federal Role in the Move Toward Consumer Direction

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Since the early 1990s, the Office of Disability, Aging, and Long-Term Care Policy (DALTCP), a division of the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services (DHHS), has made consumer direction in long-term care a major focal point of our policy research agenda. The largest and most visible of its research initiatives on consumer-directed services is the Cash and Counseling Demonstration and Evaluation, a large-scale social experiment designed to explore the possibilities and test the limits of consumer direction in publicly funded (Medicaid) home and community-based services programs. Mahoney and colleagues describe this project in detail in this issue. This article is intended to provide historical perspective on the federal government's involvement in the Cash and Counseling Demonstration and Evaluation as an example of the federal role in consumer direction. Specifically, the article describes how previous research and analysis led to DALTCP's interest in sponsoring this social experiment and shaped our thinking about is purpose and design.

The immediate antecedents of Cash and Counseling can be found in the long-term-care proposals included in President Clinton's 1993 Health Care Reform Plan. However, in a deeper sense, understanding where the idea came from requires situating this project in the context of a research tradition that includes previous and ongoing federally sponsored research on "consumer-direction," interest in learning from foreign models of providing publicly funded home- and community-based services, and reflection on the lessons learned from previous social experiments focusing on home- and community-based "alternatives to institutional care," in particular, the Channeling Demonstration.

Although Cash and Counseling is the centerpiece of DALTCP's research agenda on consumer direction, the project is not ours alone. The design and implementation of the demonstration and its controlled experimental design evaluation would have been impossible had DALTCP, a small research and policy analysis office with limited resources, not been able to enter into and sustain a complex partnership involving a major private philanthropy, multiple federal agencies both within and outside to the Department of Health and Human Services, several states (and multiple agencies within each of those states), two universities, an independent research organization, a major national advocacy group, as well as numerous private consultants.

It is particularly important to acknowledge the key role of the Robert Wood Johnson Foundation in joining us to sponsor Cash and Counseling as well as the RWJF's sponsorship of related research and demonstration projects that have influenced the experiment. Certainly, without the foundation's financial support, there would be no Cash and Counseling Demonstration and Evaluation. Although DALTCP is a cofunder with the RWJF of the rigorous scientific evaluation, the RWJF has provided all of the funding for the demonstration itself; that is, the planning and implementation grants to the participating states as well as funding for oversight, coordination, and technical assistance provided by or through the national program office for Cash and Counseling at the University of Maryland Center on Aging. Kevin Mahoney, national program office director, and Lori Simon-Rusinowitz, deputy director, have provided indispensable day-to-day leadership. We also appreciate the willingness of four states, Arkansas, New York, New Jersey, and Florida, to participate as demonstration sites. Although New York was unable to continue, Arkansas, New Jersey, and Florida have gone the distance from planning to implementation; indeed, Arkansas is approaching completion of the evaluation phase of its demonstration (December 31, 2000).

The cooperation of several other federal agencies in granting "research and demonstration" waivers or exemptions to laws and regulations applying to Medicaid, Supplemental Security Income (SSI), Food Stamps, and other means-tested government benefits also merits recognition. The Health Care Financing Administration approved Medicaid waivers under Section 1115 of the Social Security Act. Waivers were required to permit Medicaid funds that otherwise would have purchased personal care services under the Medicaid state plan (New Jersey, Arkansas) or 1915(c) home- and community-based services (Florida) to be paid out as monthly cash allowances available to beneficiaries instead of as reimbursements to service providers. These "1115" waivers were also necessary to permit Medicaid beneficiaries to use their cash benefits to purchase disability-related goods and services not otherwise covered under Medicaid and to suspend the prohibitions against certain family members (spouses and parents of minor children, whose income and assets are deemed available to Medicaid beneficiaries for purposes of financial eligibility determinations) being paid caregivers.

The Social Security Administration and the U.S. Department of Agriculture also agreed to exempt participants in the treatment group from rules related to means-testing that might otherwise have jeopardized treatment group members' eligibility for cash assistance (SSI) payments and Food Stamps. Both agencies have statutory authority to relax these rules in the interests of research, contingent on impact analyses being performed. Although both agencies were highly willing to cooperate, some time-consuming, detailed work was required to decide exactly what types of information the evaluation needed to collect to determine the demonstration's impact on recipients of SSI and Food Stamps. Less formalized understandings were also reached with the Department of Housing and Urban Development (HUD) and the Department of Education to ensure that cash benefits for disability-related services provided under the Cash and Counseling Demonstration would not adversely affect recipients otherwise eligible for low-income housing or income-related educational and vocational rehabilitation benefits.

In sum, policy research involving social experimentation on a large scale requires a considerable investment not only of finances but in team building and teamwork. Leadership and management of the Cash and Counseling Demonstration and Evaluation--which also has been a team enterprise--require holding firm to the original goals of the research and protecting the scientific integrity of its design and methodology while also negotiating for the project's survival and successful implementation within a socio-political-economic environment that is in constant flux.

The Quality of Consumer-Directed Long-Term Care

(INTRO ONLY)

With most of the purchases that people make or the activities they choose to engage in, we do not worry about the quality of those products or services--that's their own business. We leave it to them to decide whether the car that they drive is safe enough, the home that they live in is clean enough, or the food that they eat is healthy enough. The choices people make are an endless source of gossip and commentary, but most acknowledge that people have the right to make those choices.

The fact that we raise the issue of quality in consumer-directed long-term care highlights what is both obvious and unique about long-term care--that adult users of these services have chronic functional limitations, and those with cognitive impairments are often very different from the apocryphal autonomous, well-informed decision makers assumed by economists and libertarians. Even when a person is assuredly compes mentes but only requires long-term care because of physical disability, the issue of quality emerges, although typically as a poor relation to payer concerns about accountability. The public has maintained an interest in the effectiveness and quality of services because of the high costs of publicly supported homecare, concerns about the safety of consumers, and the potential risks of legal liability.

The philosophy of allowing people to have control and autonomy over their own lives and respecting the choices that people make is not new--it is consistent with basic humanistic values that have been articulated in cultures all over the world for hundreds of years. These ideas have been acknowledged for a long time in the "helping professions" such as social work and nursing, and resonate in the ideas of consumer involvement in services and treatment programs in the case management and homecare literature (e.g., Geron and Chassler, 1994).

But it is also true that consumer-directed care is a reaction to decades of care provided according to the dictates of professionals, with the views of consumers rarely addressed or considered. As consumers, patients, or clients, most of us have experienced the "know-it-all" smugness of bureaucrats and the tyranny of professionals who did not take our views seriously. The advocacy of the independent living movement and other disabled-rights advocates (Batavia, DeJung, and McKnew, 1991) in the United States; positive reports from longstanding programs of direct payment to consumers in France, the Netherlands, Germany, and Austria (Tilly, 1999); and newer demonstrations and state programs in the United States and England (Glendinning et al., 2000) have crystallized these arguments in long-term care, and have brought about a significant rethinking of professional approaches to care for adults with disabilities living in the community.

This article presents an approach to assuring the quality of consumer-directed long-term-care programs that is based primarily on the views of consumers and secondarily on other consumer-derived quality measures, as well as more traditional approaches. The reasons for reliance on this new, consumer-oriented approach are as follows: (1) traditional approaches to quality assurance based on standards set by professionals have not worked in long-term care; (2) consumers define quality differently compared to professionals, caregivers, or other stakeholders; and (3) when consumers are given the opportunity to set their own standards of quality for the types of care that they know best--the nonmedical services such as homecare and personal care--they are more satisfied and achieve better outcomes. Quality assurance approaches based on these principles will not diminish quality concerns about these services, but will change their focus. Quality will still need to be measured according to criteria established by professionals, but these criteria should become subservient to consumer-derived measures of quality. Professionally derived criteria should be reserved primarily for instances in which consumers cannot speak for themselves and where there is no reliable proxy to represent their interests, for "high tech" medical situations in which consumers cannot be expected to have the technical knowledge to judge the appropriateness or quality of care, and to set minimum standards of care.

Toward a Stable and Experienced Caregiving Workforce

(INTRO ONLY)

Recently, my mother received an early morning phone call from her friend, Elaine, who suffers from multiple sclerosis. On this particular morning, Elaine was desperate to find someone to help her get out of bed because her regular homecare worker had unexpectedly cancelled. My mother, almost 78, does not walk well, following a hip fracture, and considers herself fortunate to have found someone to help her with household chores one-half day a week. This woman, Jeanette, a 46-year-old widow from western Africa, came to the United States to live with a brother and find work to support her children back home. One of her children has mental retardation. My mother asked Jeanette if she would be willing to fill in for Elaine's homecare worker for the day. Jeanette confided to my mother her fears that she would harm Elaine, since she did not know how to assist her, that she would end up at the police station if she did harm her, and further, that she might injure herself. Still, she agreed, but she did injure herself trying to help Elaine get out of bed. As a result, Jeanette lost several days of work.

This is not an unusual scenario, and it illustrates many of the complex, interrelated dynamics that make up the business and personal relationships between consumers and paid independent providers who are hired either through the private marketplace or government-subsidized programs. Vulnerable consumers struggle to find reliable caregivers, while compassionate and caring workers lack the support and training they need to provide the quality care consumers deserve. This article addresses the reasons that it is increasingly difficult for consumers to find available and competent workers and the conditions under which many workers are employed in today's homecare market and provides an explanation of several mechanisms that are being used to mediate the needs and desires of workers and consumers.

Going Home

Topeka Independent Living Resource Center
1997

My daughter thinks I ought to live in a nursing home.

Your daughter probably only wants what's best for you. What she hasn't heard is the good news in our state about what's called attendant services.

Attendant services are most of what people get in nursing homes. The new thing that's happened here in Kansas is that attendant services can be available to people in their own homes. People don't have to go to a nursing home any more to get help with the things they do when they live on their own.

Your daughter maybe sees that you need assistance with one or more of the ordinary things people do every day--things like getting dressed, going to the toilet, bathing, eating, getting in and out of bed, paying bills on time, remembering to take your medications, keeping up with housework.

Many people used to go to nursing homes for help like that. Other people had to move in with their families for the same reason.

But I don't want to be a burden.

Today attendant services can be provided in your home by someone who does that for a living, a personal attendant. The attendant answers to you and does things the way you want them done--and always in private.

How much does it cost?

We don't charge you for anything we do. Our services are paid for by the Medicaid program in Kansas.

Who are you?

TILRC stands for Topeka Independent Living Resource Center. We pronounce it Till-Rick. We're a non-profit group, mostly funded by the state and federal governments. The majority of folks who work here are people who have disabilities themselves. They advocate for and provide services to other people with disabilities.

We do lots of different things at TILRC, but one of the most important to us is to help people stay independent and still get the assistance they need.

We help people apply for Medicaid to pay for attendant services directed by the people who use them. We're proud to be able to say that TILRC worked with Kansas government to make this choice available to people in the first place.

Who can I ask about this?

Call your county S.R.S. office, or the Area Agency on Aging. They'll probably tell you what we already know: TILRC has a pretty good reputation for doing what we say we'll do.

Or call us directly. We'll be happy to meet with you, hear about the specifics of your situation, and answer you questions the best we can. Although what we do is fairly complicated, it's not technical.

We work with people all over the state and even beyond. If you're in the Topeka area, you're welcome to come into our offices. But we'd he happy to come to where you are and meet with you. Just say when.

But my home is gone. I have nothing now.

Maybe you're living in a nursing home, or with a relative, and you'd like to have your own place the way you used to. Or maybe you'd like to move in with somebody you know. If you want any of those things, we can make it happen.

Some people we work for don't have a thing of their own left in the world, not a knife or a fork or kitchen table, not a set of sheets or a bed to put them on. Almost everybody has to start out on their own once in life, and some of us have had to do it twice. It takes a lot of figuring out, but we'll be working with you. You won't have to do it alone.

We have some storage lockers where we keep the furniture it takes to get a household started up again. People and companies donate things to us for just this reason. Most of the time, it's not brand new stuff. It's more the kind of thing people get when they first go out on their own. But once you pick it, it's yours. You own it.

We connect people with housing too, whether it's a private home or apartment or a government-subsidized building. We listen to what you'd like, then set things up so you can look over the alternatives and choose for yourself where you want to live.

What if...

You and your relatives are probably worried about very real stuff like what if it's late at night and you can't get into bed by yourself and your attendant doesn't show up?

Everybody needs backup in those situations. Attendant services can be worked out so that you always have backup.

What if...

What if the person working as your personal attendant is somebody that you just don't trust?

In the attendant services program we run, you're the boss. You choose the attendant who works for you. (It can be anyone you want--as long as you aren't married to them. That part is a Medicaid law.) You could hire a friend or a neighbor or even a relative to get paid for doing your attendant services.

If you don't know anyone for the job, you could run an ad or we can give you a list of people you might want to interview. But always you get to choose who works for you.

After you hire somebody, if they don't work out the way you hoped, we'll help you change. You are in charge.

Another what if: What if you're like that woman in the commercial and you fall but you can't get up? Everybody needs to be able to communicate in case of an emergency. Some people depend on portable phones. Other people use a gadget called Lifeline that calls a control center where people are on duty 24 hours a day to help. Other people work out signals with their neighbors. We can let you know the alternatives. You pick what works best for you.

But my family still says I'd be safer in the nursing home.

With all respect, we think its fair for you to tell your family--or whoever else wants to make decisions for you--that this is your life and you make your own choices. They wouldn't let you run their lives, would they?

It's a dignity thing, and we understand a little something about that. The people of TILRC are people with disabilities. It always seems like once you have a disability, people just naturally start telling you want to do.

The people at TILRC believe that even if we need a little help, nobody but us can make our choices. Here's what we're getting at: You are the number one all-time best-respected expert on what you want and need.

It's the principle of the thing. We make sure people follow that simple principle when they deal with us. You might want to do the same.

I use a wheelchair now, and my house isn't set up for that.

Whether you need grab bars by the toilet or a ramp up to your door or a chair in your shower or a wider door to your bedroom, we can help get it in place for you. TILRC people are people with disabilities who work on accessibility issues all the time.

This is the part that's kind of technical: People who are hard of hearing can get a light that flashes when the doorbell rings. People sometimes need computers they can use to talk out loud. We're pretty familiar with lots of those kinds of things. Sometimes we can help people get wheelchairs and walkers and automatic-opening doors. We help people get tape recorders and talking books. When people need help breathing, we help them get portable respirators and backup generators.

We know about Hoyer lifts and ostomy bags and dialysis and orthopedic braces and none of it is any big deal to us. It's normal to us because we deal with it every day of the week.

Whether you need what they call "assistive devices" or "home modifications" or both, we probably know what program will help pay for it so that independence works out for you.

But what am I going to live on?

If you're living in a nursing home now, your Social Security check goes to the nursing home and you get about $30 of it to spend every month. When you live on your own, you get to keep the whole check. The minimum Social Security check is about $480.

Granted, that's not a lot of money. But we know people who are living real well out in the community on that little bit. We will help you set up a life in the community that you can afford.

Thanks to what computers can do these days, you can get your bills paid directly out of your account without writing checks. We can help you set that up. We can also set up direct deposit of your social security check so you don't have to stand in line at the bank every month.

I don't like everybody knowing my business.

Nothing you tell the TILRC person who works with you is anybody else's business. That's confidentiality. It's the law and we guarantee we will abide by it.

We don't write reports about you or assess you or chart your progress or talk about you to anybody else without your permission. We don't do anything about you without you.

It takes a lot of paperwork, dealing with government agencies the way we do to get things that people need. So yes, we'll have a file with all your paperwork in it. But nobody gets into that file without your permission. And nothing gets put into your file that you don't know about.

There may be things you want us to talk about with your doctor or your son or your landlady. If you ever do have a situation like that, we have a paper you can sign where you give us permission to talk to just that one person about that just one thing just that one time. We're very strict about not even talking to each other about you without your permission.

We promise this because we're the same way ourselves: what's private is private and it stays that way. Period.

What if I make a plan with you and then decide I want something different?

If you truly want to live on your own, we can make that happen. You don't have to do it alone. And, like anybody else on earth, you have the right to change your mind about what you want.

Sometimes people stay in touch with us for a long time after we get them set up. Sometimes people say goodbye on the day they get where they're going and they don't call again until something new happens.

Any way you do it is fine with us. We're here and we'll be here if you want or need us again. What we won't do is come poking our nose into your life. That's a promise.

ANSWERS FOR FAMILIES

Almost always, friends and families try to do what is best for a person they love. Attendant services are, for most people, a new idea that maybe sounds a little risky.

We want you to know that people all over the United States have been using attendant services for many years now.

Since we meet new families all the time, we get to hear lots of questions. On the next few pages you'll see some of them and read some of the general answers we give.

Here's something we hear from families all the time:

The hardest thing I ever had to do was put my mother in a nursing home.

For a long time, people were faced with these horrible choices. Either they give up their job and their family life to take care of a relative or else put a person they loved in a nursing home.

Today, thanks to the government of our state, Kansans who are or will be eligible for Medicaid and who need some everyday assistance to survive can get that assistance in their own homes.

If people still want to go to nursing homes, that's fine. If people want to move in with their families and their families want to be the ones to help with everyday stuff, that's fine too. But now there's this other choice. It's called attendant services.

What attendant services amount to is getting most of the assistance a person would get if he or she lived in a nursing home. Attendant services can include things like assistance with getting in and out of bed, with bathing and toileting, with shopping and making meals, with eating, with paying bills on time and taking medications and keeping up with housework, and sometimes also with having a nurse take vital signs and set up the pills to take during a week.

Who pays for all this?

Kansas Medicaid pays attendants to do their work. In almost all cases, the person they do the work for is the boss. Being the boss means setting up the schedule, saying how the work is done, and hiring the person who does it. If your mother can't or doesn't want to do all that, she can do just a part of it and a home health agency will take up the slack.

But my dad already lives in a nursing home.

We can help him get set up, get going, and keep going in a place of his own again. This probably sounds too good to be true, or too expensive. But it's happening for more and more Kansans every year. That's the heart of what we do for a living, and it doesn't cost them or their families a dime.

We want to spread the word about these new services. That's why we made this booklet.

What qualifies you to do this work?

We're the Topeka Independent Living Resource Center (TILRC for short, pronounced Till-Rick). We're a non-profit agency and we've been in business since 1980. We are people with disabilities who provide advocacy and services for people with disabilities.

Our job with the new Kansas Medicaid attendant services program is to get attendant services set up and do whatever else a person wants and needs to have happen so they can live independently.

If the person is not yet in a nursing home, our job is to get them the services they need to help them stay independent. If they're already in a nursing home, we help them get established in the community again.

Kansas Medicaid pays us to do this for you, so it's a free service to you or your relative. Of course there's a catch: For folks with a higher income or savings, the federal government and the state of Kansas limit the amount of money a person can have and still get attendant services through Medicaid.

They require that people who have too much money to be Medicaid-eligible--but still need what Medicaid pays for, like attendant services--do a thing called a "spend-down" or "client obligation." Depending on your personal finances, that can be a little or a lot.

The state actually gets the money from that transaction, but they make us collect it for them. We'll tell you all the details and limitations in plain language any time you want to hear about it.

What we'd rather talk about here is closer to our hearts: how we do our job. See, it's not like we have some special formula or any kind of a one-size-fits-all service. We do whatever it takes to get the job done, from big things like attendant services and housing and home modifications to the little last-minute work to make everything come together at the same time.

There's nothing canned or processed about what we do. It would never fit on a form. We tailor what we do so it's what the person wants and needs to live the life he or she wants to live.

It's not simple. In fact, what we do can get pretty complicated--complicated but not technical. We try to explain it so that the people we're doing it for understand it every step of the way.

We can do just a little for somebody or a whole lot. That's up to the person who gets the services.

The rest of this brochure is written for that person. We hope you'll start from the front and read it through to get an idea of what we do and how we do it.

But my father can't do anything for himself.

One time we helped a man live in the community when everyone said it was hopeless. He had been in coma for pretty much all the years since he got hit by a car, and this man was probably dying by the time we met him and his family.

His family wanted to see that he was treated right and kept comfortable the way anybody should be. We helped get the man moved into a small apartment of his own, near his family so they could come and look in on him whenever they wanted to. But this way they didn't have to give up earning a living and taking care of their kids to take care of him.

We got that man set up with attendant services so the family could be sure that he got his food and his personal needs taken care of. That's where he lived and how he lived until the day he died.

We figure that if we can put together services for someone who really can't do anything for himself at all, we can probably do it for your relative too.

In a situation like that, the person who gets the services isn't in charge of them. Someone in the family takes that role, to make sure things work out right. In all the others ways, it's the same deal.

We'd be happy to work with you and your friend or relative. Just give us a call. We'll come out and meet with you.

This brochure available from Topeka Independent Living Resource Center, 501 S.W. Jackson, Topeka Kansas 66603, Tel: 800-443-2207, E-mail: tilrc2@tilrc.org, Web site: http://www.tilrc.org

IMPACT--Feature Issue on Support Coordination and Self-Determination for Persons with Developmental Disabilities

Published by the Institute on Community Integration, College of Education and Human Development, University of Minnesota
Volume 12, Number 4, Winter 1999/2000

Full Journal "From the Editors" and the first paragraph of each article are included below. The "Resources for Further Information" is also included in full.

ARTICLES:

From the Editor

The topic of this Impact returns to the topic of the first issue published 12 years ago. Although that one focused on what was then called "case management", we noted that terms like "service coordination" and "service integration" were becoming increasingly popular as descriptors of "the complex processes involved in case management."

Today, numerous labels are applied to the direct assistance provided people with developmental disabilities and their families, assistance intended to support them in understanding their full range of service and support options; making decisions that support their values, goals, and needs; and more directly controlling their own lives. In these pages, the authors use a variety of terms (e.g., case manager, service coordinator, support broker) to describe the role of those who are supporting persons with developmental disabilities to live the lives they choose. This variation in language reflects our evolving understanding of support, as well as our diverse service systems. Whatever the label, the important message for readers of this issue is that those who fill that role are a vital element of systems committed to supporting inclusion and self-determination.

A System in Transition: Dane County Moves From Case Managers to Support Brokers

(INTRO ONLY)

Dane County, Wisconsin, has long evaluated the way it delivers case management to its citizens with developmental disabilities. While in the past some people received this service from the county case management unit, most had a case manager who was employed by the agency providing their residential or vocational support. Many, in and out of the system, saw the conflict inherent in this way of delivering support in planning, coordination, and advocacy. People with disabilities did not have a choice about their case manager or the work they wanted the case manager to perform with them and on their behalf.

By Freedom Buoyed: Systems Change in Vermont

(INTRO ONLY)

The dream of freedom buoys the spirits of people around the world as, piece by piece, they dismantle the physical, economic, political, and social walls of oppression and exclusion. This dream of freedom is just beginning to spark in people with developmental disabilities, and it is a spark that individuals concerned with the human and civil rights of all people must fan.

Consumer Empowerment Through Choice: Indiana's Privatized Case Management

(INTRO ONLY)

Until 1990, case management in Indiana was provided only by governments agencies. In that year, Indiana privatized case management within its Medicaid Home and Community-Based Services (HCBS) waiver program for individuals with developmental disabilities. The motivation for privatization was two-fold. First, downsizing the bureaucracy became popular across the country at that time, beginning at the federal level and moving down to local government. Federal, state, and local government began using more and more private contractors in all areas, from pouring concrete to writing sophisticated computer software. A second more specific motivation for privatizing case management was to reduce the caseloads of state case managers, and support a focus on quality rather than quantity in their work.

I'm Not a Case and I Don't Want to Be Managed!"--Supporting Self-Determination

(INTRO ONLY)

People with disabilities historically have had to rely on case managers to assist in planning and coordinating services. The term case manager retains the historical implications of the medical model and its depersonalization of individuals -- thinking of them as occurrences of diseases or conditions (i.e. "cases"). Today, the philosophy and practices associated with self-determination and those of case management are colliding to create and define new roles and responsibilities that are sometimes referred to as support or service coordinators, individual brokers, and other related terms.

From Management to Support: No More "Business as Usual"

(INTRO ONLY)

One of the very best aspects of the field of developmental disabilities is that we reinvent ourselves every few years in response to new knowledge and changing perspectives. How we coordinate services reflects these shifts and changes.

Plotting a Course to Better Service: Self-Determination in Nebraska

(INTRO ONLY)

With the next century on the horizon, Nebraska's developmental disabilities system continues to plot its course to better serve the state's citizens. Our system has come a long way in the past decade to move toward a system in which self-determination is an inherent part of all services and all efforts to support people with developmental disabilities.

Resources for Further Information

The following may be of interest to readers of this issue of Impact. For cost and ordering information on materials, please contact their distributor.

Case Management/Support Coordination

Report of the Services Coordination Implementation Work Team, by the Nebraska Partnership for Health and Human Services. In 1991, the Nebraska Developmental Disabilities Division convened system stakeholders to examine alternatives for comprehensively redesigning the state's case management system. This report describes the full implementation process of Nebraska's redesigned service coordination system, a process that was completed in 1997. The system is state-operated and financed under the TCM option. Available from the office of Carla Lastey, Health and Human Services, Developmental Disabilities System, Lincoln, 402/479-5110.
OMRDD Plan for Service Coordination/Case Management, by the New York State Office of Mental Retardation and Developmental Disabilities. Beginning in 1995, the office embarked on a comprehensive redesign of its case management system to ensure independence of service coordination from direct services, and strengthen consumer empowerment within their services system (among other objectives). This publication is a copy of their plan. Available from the office of Thomas Maul, Commissioner, NYSOMRDD, Albany, 518/473-1997.
Connecticut Department of Mental Retardation Case Management and Quality Assurance Study, by M. Smull and J. Hollahan. In 1996, the Connecticut Department of Mental Retardation contracted with the University of Maryland to conduct a comprehensive review of its case management and quality assurance system. This report contains an analysis of the present system's strengths and weaknesses, and offers suggestions for improving the system, including a vision for case management services and training recommendations. Available from the office of Peter O'Meara, Commissioner, Department of Mental Retardation, Hartford, 860/418-6000.
Case Management for Hawaii's Citizens with Developmental Disabilities: Putting the Pieces Together, by R. Cooper and C. Lasley. In 1996, Hawaii began transitioning to a system of independent state-operated case management, and making the system more attentive to families and consumers. This report, commissioned by the Hawaii Developmental Disabilities Division, contains an analysis of the system and recommendations for improvement. Available from the office of Anita Yuskauskas, Chief, Developmental Disabilities Division, Department of Health, Honolulu, 808/586-5840.
Living Everyday Lives: Support Coordination Training, by the Florida Developmental Services Office and Florida Developmental Disabilities Planning Council. This training manual and other training resources produced by the office provide information about training materials on person-centered planning and support coordination. For more information contact Denise Arnold, Developmental Services Program Office, Florida Department of Children and Families, Tallahassee, 850/ 488-4257.
How to Get People to Work Together, by D. West. Service coordination requires that many people work together, communicate effectively, and resolve conflict. This videotape and accompanying materials are designed for training members of interdisciplinary teams involved in case management and service coordination, and focuses on techniques of effective communication and conflict resolution. Available from Bethesda Lutheran Homes, Watertown, WI, 800/369-4636.
Impact. Feature Issue on Supporting Parents Who Have Cognitive Limitations. Communities and agencies actively engaged in supporting persons with cognitive limitations to be successful in raising their children are profiled in this issue. Available from the Institute on Community Integration, University of Minnesota, 612/624-4512.
Reinventing Quality: The 1998 Sourcebook of Innovative Programs for the Quality Assurance and Quality Improvement of Community Services (http://ici2.coled.umn.edu/rtc), by B. Polister, et al. Produced by the Research and Training Center on Community Living at the University of Minnesota, this sourcebook describes selected programs offering innovative or comprehensive approaches to quality in services for persons with developmental disabilities.
Guide to High Quality Direct Service Personnel Training Resources (http://www.ici2.coled.umn.edu/rtc/dsptr), by A. Hewitt et al. The topical index in this guide to materials for use in training direct service personnel identifies 20 resources under the heading Case Management/Service Coordination. The guidebook was produced by the Research and Training Center on Community Living, and is also available in print from the Publications Office, Institute on Community Integration, University of Minnesota, 612/624-4512.

Self-Determination/Person-Centered Planning

National Program Office on Self-Determination Website (http://www.self-determination.org). A discussion group on independent brokering and support coordination, along with other discussion groups, and publications and resources on self-determination, are included in this Website. It's a Robert Wood Johnson Foundation program.
Responsive Systems Associates (http://soeweb.syr.edu/thechp/rsapub.htm). Responsive Systems Associates (John O'Brien and Connie Lyle O'Brien) produces a variety of materials on self-determination, person-centered planning, innovative services, and community building. Many are available on this Website.
Essential Lifestyle Planning (http://www.allenshea.com). The section of the Website titled Michael Smull and Friends contains information on various aspects of Essential Lifestyle Planning, a simple approach to individual services planning.
PATH Workbook and PATH Training Video, by Inclusion Press and Parashoot Productions. PATH is an eight-step planning tool and problem-solving approach that involves dreaming for the future and ending with an action plan for the present. The workbook is an essential tool for anyone thinking about or using PATH in person-centered planning with individuals, families, or organizations. The training video illustrates the steps of the PATH process with Joe, who has cerebral palsy and is moving from a small institution to his own apartment. Available from Inclusion Press, Toronto, 416/658-5363 or http://inclusion.com.
Impact: Feature Issue on Person-Centered Planning with Youth and Adults Who Have Developmental Disabilities. The values, attitudes, and practices associated with person-centered planning at its best are described in this Impact by a number of leaders in its development and implementation. Available. from the Institute on Community Integration, University of Minnesota, 612/624-4512.

This publication can be purchased from Institute on Community Integration, University of Minnesota, 109 Pattee Hall, 150 Pillsbury Drive S.E., Minneapolis, MN 55455, Tel: 612-624-4512, E-mail: publications@icimail.coled.umn.edu, Web site: http://ici.umn.edu/products/newsletters.html

Self-Determination Changes Everything

(INTRO ONLY)

Winnebago County, Wisconsin, set a goal three years ago to transition from a county that provided traditional developmental disabilities services, to one that incorporates the values, principles, and practices of self-determination. With the help of the Robert Wood Johnson Foundation and the State Bureau of Developmental Disabilities Services, we put together a plan that we, at the time, hoped would be fully implemented by the year 2000.

Support Brokers Are in Our Future

(INTRO ONLY)

The changes that are emerging in systems of support for people with developmental disabilities are part of an evolutionary process that began decades ago. Over this time, the inhumane conditions associated with institutions were exposed; community residential, day and family supports were created; and federal and state legislation supporting the civil rights of people with disabilities was passed. Along the way, ideals like normalization, inclusion, and participation were used to criticize prevailing practices and inform further change. It is as if the closer we think we are to the realization of these ideals, the more they demand of our skills and creativity.

Support Coordination in Florida: An Evolving Story

(INTRO ONLY)

Just as the individuals we serve continue to change and improve their quality of life, the support coordination system in Florida continues to change and improve, evolving into a more person-centered system. It started approximately seven years ago, when Florida first embarked on the concept of independent support coordination. At that time, a traditional case management system existed that was professionally driven and focused on 'fixing" the person rather than building upon the person's talents, abilities, and personal preferences. in 1992, Florida's Medicaid Home and Community-Based Services waiver (HCBS waiver) programs for persons with developmental disabilities was approved for expansion. The person-centered approach to service delivery that was its goal began with the initiation of the independent support coordination design. This article will describe the original design of the system and how the system has evolved.

There's No Place Like Home: Supporting People in Communities in Kansas

(INTRO ONLY)

The Kansas Division of Health Care Policy is committed to providing individuals with developmental disabilities the opportunity to plan person-centered supports, choose among a variety of services and supports, and enjoy full community participation. Consistent with these themes, tremendous changes are occurring related to how people with developmental disabilities receive supports in Kansas. These changes, referred to as the Self-Determination Option, promise to provide the supports that are truly needed and wanted, instead of simply offering what's available.

Thinking About Support Broker Roles

(INTRO ONLY)

As service systems increasingly embrace the principles and practices of self-determination and individual funding, people are looking at the roles of those who have been traditionally known as case managers or service coordinators. The expectations that many had of service coordinators in the late '70s and early '80s have been buried under increasing numbers of people to support and endless paper to complete. As we change from service coordinators to support brokers (or whatever new label is adopted), we have the danger of just changing the labels without changing what happens. Unless the underlying structures are changed, including reducing the volume of paper and the numbers of people each support broker works with, the changes in roles and expectations needed to achieve self-determination are doomed. Real change needs to begin with an understanding of the desired outcomes and then move to developing the structures to support it. We need to begin by asking what do support brokers need to know and do?

Training Future Case Managers: Moving to a Support Approach

(INTRO ONLY)

Case management, as a way of helping people more thoroughly benefit from services, began in the anti-poverty programs of the 1960s, and then moved into the rehabilitation field. It was embraced in developmental disabilities services in the mid to late 1970s as community integration became more popular, as people were less often placed in settings where a single agency was responsible for all aspects of their lives, and as a functional approach to defining developmental disabilities became more widespread. The federal Developmental Disabilities Assistance and Bill of Rights Act of 1978 established the policy rationale for case management by including, as part of the criteria for a developmental disability, that it "Reflects the person's need for a combination and sequence of special interdisciplinary or generic care, treatment or other services which are life-long or of extended duration and...are individually planned and coordinated."

Independence Care System

Independence Care System is a nonprofit organization with one primary goal: to help Medicaid-eligible adults (over 21 years old) with significant disabilities or chronic illnesses live in their homes and communities.* Every effort will be made to keep members in their homes as long as possible.

We understand how difficult it can be for people with disabilities to find the medical expertise and specific long term care services needed to live independently. ICS was created to make this process easier, more focused on individual needs, and more satisfying to the consumer.

Independence Care System recognizes the need for both comprehensive and individualized services, and is prepared to provide them. ICS effectively builds on New York City's existing system of health care and social service providers in developing a specialized program for each of our members.

The most important service Independence Care System provides is the comprehensive and coordinated management of the health and social services you need. Our commitment to you is to develop a program of services that meet your individual health care needs.

We will also work with you to manage services not directly or currently covered in the ICS program--such as physician and hospital care. We can also help you arrange these services it you do not currently have them in place. If you are also a Medicare recipient, your Medicare coverage will not be affected by your membership in ICS.

The following list represents our basic services. If you do not see something on this list that you need, please let us know when we meet with you.

Care coordination
Home care aide services including home health aides, home attendants, and personal assistants
Home health nursing and physical, occupational and speech therapy services
Adult day health care
Medical equipment and supplies, including prosthetics and orthotics
Transportation
Prescription and non-prescription drugs, if ordered by your physician
Podiatry
Dental care
Eye exams, glasses and other vision services
Services and equipment for people with hearing impairment
Home delivery of meals
Social day care
Respiratory therapy
Social and environmental support such as home modifications, linkage to vocational training, and referral to Independent Living Services for skills training, help in setting up an apartment, using accessible transportation, check writing, etc.
Rehabilitation services, including physical therapy, occupational therapy, and speech therapy
PERS (Personal Emergency Response System)
Nursing home care
Nutrition services

If you are now receiving services from a person or program not included in our network of services, we can talk with you about bringing your current provider into our system, or discuss with you the best way for you to make the transition from your current provider to someone in the ICS network.

To receive a list of our current providers, or to find out if one of your providers is already part of our network, contact ICS at 212-584-2500 during regular business hours (9 am to 5 pm).

An integrated network of care...over time.

Independence Care System understands that your needs may change. We can work with you in adjusting services to maximize your independence and comfort.

For as long as you remain a member of ICS, we'll be there for you--whether you are at home, in a hospital, or in a long term care facility. We will spend time with you, listen and learn from you, and work with you to get the services and resources you need.

We want to meet you.

If you are interested in learning more about Independence Care System, and how our services might meet your needs for independence, please call us at 212-584-2500 between 9:00 am and 5:00 pm.

When you call, a member of our intake team will schedule a meeting with you--in your home or somewhere convenient for you--to talk about how the ICS program can help you.

If you are eligible and decide to enroll, your membership in ICS will become effective within two to seven weeks.

If you would like independent information about ICS...and to learn more about the health and long term care services available to people with disabilities, you are encouraged to contact the following organizations:

Bronx Independent Living Services, 3525 Decatur Avenue, Bronx, NY 10467, Phone: 718-515-2800, TTY/TDD: 718-515-2803
Harlem Independent Living Center, 15 West 125th Street, New York, NY 10027, Phone: 212-369-2371, TTY/TDD: 212-369-6475
Center for the Independence of the Disabled in New York, 841 Broadway, New York, NY 10003, Phone: 212-674-2300, TTY/TDD: 212-674-5619
New York City Department for the Aging, Long Term Care Services, 2 Lafayette Street, New York, NY 10013, Phone: 212-442-3086
Alzheimer's Association, 360 Lexington Avenue, Fifth Floor, New York, NY 10017, Phone: 212-983-0700, Web: www.alzheimernyc.org, E-mail: jeanmarks@alz.org

* ICS is a managed long term care plan. Membership is voluntary, and requires Medicaid eligibility and certification that a nursing home level of care is needed. We serve the boroughs of Bronx and Manhattan.

This brochure available from Independence Care System, 257 Park Avenue South, Second Floor, New York, NY 10010-7304, Tel: 212-584-2500, Fax: 212-584-2555, E-mail: info@icsny.org, Web site: www.icsny.org

INDEPENDENCE CARE SYSTEM: A Coordinated Care Program For People With Physical Disabilities

Case Statement
March 2001

INTRODUCTION

Independence Care System (ICS) is a nonprofit organization committed to assisting people with disabilities to live independently. We use the vehicle of a managed long-term care program to coordinate a comprehensive range of services in an integrated, flexible manner. ICS began operation in April 2000 and has approximately 150 members as of March 2001. We intend to enroll approximately 300 people a year for the next three years.

ICS serves Medicaid-eligible individuals over 21 years of age with significant physical disability or chronic illness who reside in New York City. The target population primarily consists of younger adults with disabilities due to severe trauma and/or injury and degenerative neurological and muscular diseases--e.g., spinal cord injury, multiple sclerosis, cerebral palsy and muscular dystrophy.

Physically disabled adults living in the community generally live within severe constraints in terms of available health and social services. They are often viewed as "problem" consumers in the fee-for-service health care system. Most health care providers--from physicians to home care aides--have little training or knowledge about their disabilities. Adults with disabilities often require more time and have more unusual problems than the typical patient or consumer. The implications in daily life of a fragmented system mean that the medical specialist too often cannot obtain consistent rehabilitation services or infusion therapy in the home, or the home health care nurses and aides have little information from the consumer's physician to guide their work.

Further, the mobility needs of severely disabled adults are virtually ignored in this system. Almost every disabled consumer finds it impossible to secure a transportation service that consistently arrives on a timely basis for medical appointments. The consumer whose wheelchair needs maintenance or minor repairs often does not know where to get reliable service or who will pay for it. Yet, access to health care for many people with severe disabilities depends on both an adequate wheelchair and regular transportation.

ICS was established to address these issues. Consumers become members who plan and manage their own health care and social supports in conjunction with care coordinators and service providers. The focus is on coordination of services, identifying gaps in needed services and identifying preferences for services and how they are provided.

ICS was also established to further develop and broaden the impact of the "good jobs/good care" model of paraprofessional home care developed by Cooperative Home Care Associates (CHCA) one of its co-sponsors. ICS will provide a unique opportunity for CHCA to grow to a 1,000-person agency within the next five years.

BACKGROUND

Independence Care System, Inc. (ICS) is a 501(c)(3) nonprofit subsidiary of the Paraprofessional Healthcare Institute (PHI). The Institute is a ten-year-old independent 501(c)(3) nonprofit organization affiliated with Cooperative Home Care Associates (CHCA), a sixteen-year-old worker-owned home health care agency employing approximately 600 African-American and Latina women as home care aides in the Bronx and Harlem. Approximately 70 percent of CHCA's workforce was dependent on public assistance before being trained and employed by CHCA; the majority are single mothers of young children.

Cooperative Home Care Associates is widely recognized as a model for providing both high-quality paraprofessional home care jobs and high-quality services to its elderly and disabled clients. CHCA received the 1992 "Business Enterprise Award" from the Business Enterprise Trust for social responsibility in business, the 1993 "Brookdale Award for Best Practice in Human Resources and Aging" from the Brookdale Center on Aging and the American Society on Aging, and the "1997 Corporate Conscience Award" for employee relations from The Council on Economic Priorities.

In 1991, CHCA sponsored the creation of the Paraprofessional Healthcare Institute (PHI), a 501(c)(3) nonprofit organization to develop new programs and conduct policy analysis consistent with CHCA's "Quality Jobs/Quality Care" mission. PHI was commissioned by the United Hospital Fund in 1994 to articulate this approach in a monograph, "Better Jobs, Better Care: Improving the Health Care Workforce."

PHI and CHCA are now sponsoring the creation of ICS to develop a coordinated system of care for adults with disabilities in New York City. ICS and CHCA combined have the potential for becoming major actors in New York City's long-term care industry. ICS will be highly visible as the payor and coordinator of care for a physically disabled and chronically ill population throughout four of the five boroughs of New York City. CHCA will be a major, integral component of its system of care.

GOAL AND OBJECTIVES

The goal of Independence Care System is to enable people with disabilities of all ages to remain at home, or in the least restrictive setting possible, by coordinating the full range of primary care, acute care and home and community-based services in a comprehensive, flexible manner.

We are the first managed long-term care program in New York State to focus on the needs of the physically disabled. We are also unique in our dual focus on: 1) emphasizing the full participation of disabled consumers in the care planning and management of their own health and social supports; and 2) developing a tailored system of medical and social care for each member, based on the member's preferences and their choice of provider--from physicians to home care aides. This focus, and the values embedded in it, is particularly important to consumers and disability rights advocates.

The development of ICS is especially significant in the context of the Supreme Court's decision in 1999 in Olmstead v. L.C. This decision ruled that the Americans with Disabilities Act prohibits the unnecessary/inappropriate institutionalization of individuals with disabilities in long-term medical facilities. As a result of this decision, the Federal Department of Health and Human Services has recently given guidance to the state explaining new regulations extending Medicaid coverage to more people with disabilities and on how they can apply for grants to improve their long-term care systems and to assist individuals transitioning from institutional to community-based care settings.

Many states, like New York, see managed long-term care organizations as the most desirable type of intermediary organization to be accountable for providing community-based care using Medicaid funds. Yet, state are also confronted with the dilemma that the existing models for managed long-term care, like the PACE program, are designed for an elderly population and not the physically disabled.

There is a clear need for a new model, like ICS, which becomes the mechanism for accountability for: addressing the medical and social needs of the disabled by building on the strengths of the current health and social service system and strengthening existing or developing new services where necessary; respecting and embracing the core values and beliefs of the disabled rights movement; containing overall costs over time; and operating at sufficient scale to service a substantial portion of adults with physical disabilities.

ICS has been developing such a model and we are seeking to be at the forefront of efforts nationally to serve people with disabilities appropriately in the community.

DESCRIPTION OF NEED

ICS serves Medicaid recipients with significant physical disability or chronic illness who are eligible for placement in a nursing home level of care. This population primarily consists of younger adults with significant disabilities typically due to severe trauma and/or injury or degenerative neurological and muscular diseases. There are approximately 18,000 eligible people in New York City.

People with disabilities want to remain at home for as long as possible, to be supported by family, friends and familiar service providers. Severely disabled individuals are exclusively neither acutely nor chronically ill. Instead, their conditions tend to be long-term, often degenerative, with episodic flare-ups that may have an uncertain prognosis. Their concern is much less with "curing" their illness than with managing their illness with maximum dignity and comfort. As a result, the clients require care that recognizes and responds to their very specific needs--care that is delivered in a coordinated, "seamless" manner and that blends both medical and social support services. They also require continuity of care so that both client and family can be supported emotionally and psychologically--not just medically--over extended periods of time.

Adults with significant physical disabilities are often viewed as "problem consumers" in the fee-for-service health care system. Most health care providers--from physicians to home care aides--have little training or knowledge about their disabilities. Their conditions are rarely clinically monitored because they typically receive home care services through the largely custodial personal care/home attendant programs and they often do not have primary care physicians if they are Medicaid beneficiaries.

Instead of primary care providers they tend to rely on the specialty clinics of academic medical centers. These clinics are staffed by medical residents who rotate every six months. As a result, there is no continuity of care or building of knowledge about the consumer/patient over time and often inappropriate referrals are made to other clinicians in the process.

Virtually unattended, adults with disabilities are more vulnerable to acute health problems such as decubitus ulcers, fractured bones, contractures, urinary tract infections, respiratory tract infections and deep vein thrombosis. These problems become serious quickly, often resulting in unscheduled hospitalizations and secondary disabilities and limitations.

Paraprofessional home care is widely regarded by many disabled individuals as their "lifeline" or primary support. Home care aides are the immediate link between client/family care givers and professional service providers, particularly in terms of daily support for self-care and prevention programs, early detection of problems and changes in physical condition. Yet, paraprofessionals are rarely respected, trained or communicated with in a way that recognizes their value.

Further, the mobility needs of disabled adults are virtually ignored in this system. Customized fittings for wheelchairs, for example, are typically done by the durable medical equipment provider in a hospital setting without ever visiting the consumer's home to make sure the chair fits through doors, elevators and hallways. Motorized wheelchairs require routine maintenance and minor repairs but it is extremely difficult to find reliable service providers and to get Medicaid or Medicare to pay for it.

Consumers are typically unable to identify a transportation company which consistently arrives on a timely basis, is appropriately equipped with safety equipment for a variety of wheelchairs and has experienced, sensitive drivers. A single trip will often take an entire day to complete. Yet, access to health and social services for many people with significant disabilities depends on both an adequate wheelchair and regular transportation.

Finally, people with disabilities have limited opportunities for participation in community life--e.g., employment, recreation and sports activities. This is, in part, due to lack of transportation and, in part, a lack of suitable options.

PROGRAM DESCRIPTION

Independence Care System began operation in April, 2000 and has approximately 150 members as of March, 2001. We intend to enroll approximately 300 people a year for the next three years.

ICS serves Medicaid--eligible individuals over 21 years of age with significant physical disability or chronic illness who reside in the Bronx and Manhattan in New York City. We will expand to Brooklyn and Queens in New York City over the next three years. The target population primarily consists of younger adults with disabilities due to severe trauma and/or injury and degenerative neurological and muscular disease--e.g., spinal cord injury, multiple sclerosis, cerebral palsy and muscular dystrophy.

Independence Care's program has five key elements:

Consumer Participation

We are building a new framework for balancing provider and consumer perspectives that emphasizes the full participation of the consumer in care planning and the management of their own health and social supports. The emphasis is on building on their individual strengths and what they can do for themselves in conjunction with identifying their preferences for various services and how they are provided.
Interdisciplinary Care Management

The member is part of an interdisciplinary care management team led by a nurse and a social worker. The focus is on coordination of services and identifying gaps in needed services. We must coordinate care over time, with multiple providers, and across primary, acute and long-term care settings.
Comprehensive Services

We offer a comprehensive range of services and supports that consumer's value. This includes: consumer-directed paraprofessional care; wheelchair repair and maintenance; transportation to medical and social activities; and support groups. We must not only make these services widely available but also allow maximum flexibility in their use.
Focus on Mobility Needs

Our focus on the member's mobility needs ranges from accessibility surveys of site-based providers to providing wheelchair repair and maintenance services. As a large purchaser of transportation services we will require timely and responsive services. We will also provide specialized support for fitting motorized wheelchairs.
Build Knowledge and Skills

We must continuously build knowledge and skills among our providers, our staff and our members about the disabling conditions they are working with and how to effectively work with each other. Training for providers and for consumers must be an ongoing process.

ICS coordinates a wide range of primary, acute and long-term health care providers. The service network builds on the City's existing system of services for the physically disabled. The challenge is to develop a core group of key providers over time, while at the same time, supporting a very broad network. Consumer choice is embedded in ICS' philosophy of supporting consumer-members as the primary managers of their own care. Choices extend to all providers, especially paraprofessionals, and not just to physicians.

We currently offer a benefit plan that includes: care management, home health care, personal care, adult day health care, durable medical equipment, transportation, prescription and non-prescription drugs, podiatry, dentistry, optometry, audiology, home delivered meals, social day care, respiratory therapy, social and environmental support, rehabilitation services and nursing home care. Inpatient and outpatient hospital services, physician services and several other areas are currently excluded from the capitation arrangement; however, all care is coordinated by ICS. Providers bill Medicare directly for Medicare-covered services.

We pay particular attention to five areas: physician services; paraprofessional home care; durable medical equipment; transportation; and fostering opportunities for participation in community life.

ICS is continuously seeking to identify and develop relationships with a sufficient number of physicians who are in accessible settings, knowledgeable about the medical needs and expectations of ICS' members, sensitive in their interactions, and committed to a collaborative, interdisciplinary approach--and will see people, by appointment, at Medicaid rates. We expect these physicians to be able to obtain consultation from other physicians/specialists as required without referring ICS members to clinics. We also will establish simple administrative procedures for transferring useful information, ongoing communication and billing for payment.

ICS is also working to develop a more highly skilled paraprofessional workforce as a critical member of the health care team, not as an appendage. We need home care aides who are: skilled, reliable workers; able to accommodate a wide range of needs from going to school or work to dependence on a ventilator; able to report changes in conditions/compliance with prescribed regimens especially when a person can not see himself or herself; and able to establish good relationships with nurses and social workers who are part of the care team. Members will also choose the organizational form of paraprofessional care they want--i.e., provided by an agency such as Cooperative Home Care Associates, or consumer-directed, such as Concepts of Independence which acts as a fiscal intermediary for personal assistants hired and supervised by consumers.

ICS provides specialized support for fitting motorized wheelchairs. We have also initiated our own wheelchair repair and maintenance service. Initially, we are focusing on using our purchasing power to obtain adequate transportation services but expect that we will need to provide some portion of our transportation needs directly by the third year of operations.

ICS is also working to develop more options for participation in community life for its members. The current options rage from advocacy activities regarding public transportation, trips to recreation or entertainment or sports events, and participation in athletic teams. We are also seeking to arrange for our members to purchase personal computers and be connected to our Website and with each other.

Another potential mechanism for social participation is to create community social centers. Such centers could be informal, safe places where people with disabilities could spend time as they wish. The centers could have some or all of the following functions; café; meeting space; resource library access to computers; educational classes; ICS member training; and support groups.

Finally, ICS is committed to building knowledge and skills among members, staff and providers about the disabling conditions they are dealing with and how to work with each other. We will establish a training institute that will offer a variety of courses or sessions in different community-based locations--e.g., independent living centers, churches, settlement houses. ICS members, staff and providers will serve as instructors.

The ultimate success of the program will depend in large part upon our ability to establish a sense of community among our caregivers and our client members. With this sense of community will come the trust, loyalty and mutual support that provides the basis for long-term organizational development. This is the philosophy that has driven the development of Cooperative Home Care Associates and PHI for the last 16 years.

ORGANIZATIONAL STRUCTURE

The ICS governance structure reflects the broad-based nature of our program. ICS is sponsored jointly by Cooperative Home care Associates (CHCA), a 600-person worker owned home care agency, and the Paraprofessional Healthcare Institute (PHI), a nonprofit affiliate of CHCA. The Presidents of CHCA and PHI represent ICS' co-sponsors. There are two consumer advocates on the Board, which currently consists of the Director of Health Policy Access for Gay Men's Health Crisis and the director of an independent living center. There are three At-Large or public positions which currently consists of a local general manager of Physicians Health Services, a large health maintenance organization; the Vice President for Policy of the United Hospital Fund; and a representative of the NYC Investment Fund, a major financial supporter. The President of ICS is also a Board member.

A Consumer Council consisting of ICS members and representatives of advocacy organizations for people with disabilities has also been established. A Director of Advocacy/Ombudsperson, who is a full-time staff person and a recognized leader in the disabled community, helps facilitate and ensure that consumers have a real and effective voice in the organization.

The senior management team consists of the following:

President
Director of Operations
Chief Financial Officer
Director of Care Management
Medical Director
Director of Clinical Services
Director of Advocacy
Director of Community Outreach

Rick Surpin
Frances Sadler
Jan Saglio
Ann Wyatt
Dr. Peter Connolly
Eileen Hanley
Marilyn Saviola
Portia McCormack

The team has extensive experience in: design and management of long-term care programs and specialized programs (including people with AIDS and hospice care); traditional and specialized managed care organizations; and business development and finance.

FUNDING AND BUDGET

Planning support for ICS totaled approximately $1.5 million and was obtained through grants from the Altman Foundation, the Ford Foundation, the Robert Wood Johnson Foundation, the Charles Stewart Mott Foundation, New York Community Trust, The Pfizer Foundation, the United Hospital Fund and the Public Welfare Foundation.

Start-up financing to date has been obtained through a combination of $2.3 million in grants and $3.75 million in medium and long-term debt. Grants have been obtained from the following sources: the Ford Foundation; the F.B. Heron Foundation; the Charles Stewart Mott Foundation; the Fan Fox and Leslie R. Samuels Foundation; New York Community Trust; and an Anonymous Foundation; United Hospital Fund, and the California Wellness Foundation.

The medium and long-term debt has been obtained from the following sources:

New York City Investment Fund 5 year term loan	$1.8 million
The Ford Foundation 10 year program-related investment	$1.2 million
Nonprofit Facilities Fund 5 year loan for renovations	$600,000
National Cooperative Bank 5 year term loan	$150,000

The debt is used for working capital and for meeting the State's loss reserve requirements.

SUMMARY

Independence Care System will succeed if we are able to build trusting relationships with our members and providers, foster collaborative working relationships which are truly interdisciplinary and enable real participation and choices for members in care planning and management. We must do this in the context of addressing the basic problems that people with physical disabilities face everyday. It is an organizational mission which is simultaneously daunting in its complexity and essential because there is no other organization that we know of that is prepared to undertake these challenges.

This paper available from Independence Care System, 257 Park Avenue South, Second Floor, New York, NY 10010-7304, Tel: 212-584-2500, Fax: 212-584-2555, E-mail: info@icsny.org, Web site: www.icsny.org

Independent CHOICES

Arkansas Department of Human Services
December 2000

Arkansas is one of the first states in the nation to offer disabled and elderly Medicaid clients a cash allowance to purchase their own personal care services. Here's how it's being done...

In December 1998, Arkansas became one of the first states in the nation to fundamentally change the ways in which Americans may receive personal care services through Medicaid. The experimental program is called IndependentChoices, and it may be the key to returning personal freedom to millions of people in Arkansas and across the nation.

In most states, Medicaid is unable to give its clients who need personal care services choices regarding how, when, or by whom those services are delivered. But Arkansas (along with Florida and New Jersey) is pioneering a revolutionary alternative: giving a monthly cash allowance to 1,000 of its Medicaid enrollees who want to make their own decisions about their personal care needs.

The cash allowance does more than help people pay for needed services, it gives them back some freedom and independence. Many people are using the cash to hire family members or friends as their personal care assistants. Others are working with IndependentChoices counselors to identify more creative ways to spend their allowance. For example, a blind man used part of his to purchase a washing machine because he was fearful of going to the Laundromat on his own. And an elderly woman who can't cook for herself bought a microwave so she could easily heat already prepared foods.

Of course, IndependentChoices, which is part of the national Cash & Counseling Demonstration Program sponsored by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services, isn't for everyone. The traditional personal care system works well for many people because they are unable to -- or don't want to -- make decisions about their care. But many others want to make their own decisions -- or at least appoint someone else to do it for them -- and in Arkansas they now have that option.

The bottom line is choice -- Arkansas is giving freedom of choice back to people who never willingly gave it up.

WHY GIVE PEOPLE MORE CHOICE?

Personal care services involve the basic tasks of daily living such as bathing, dressing, grooming, preparing meals, and housekeeping. This kind of daily assistance often is a requirement for people with disabilities, but also is sometimes necessary for older people, who may be physically unable to do things like cook or get in and out of the bathtub on their own.

Most states contract with home care agencies to deliver services to their Medicaid clients at home. The state pays the agency according to the amount of care each person needs, as determined by an assessment. The client may select a personal care agency, but often has no say in who cares for him or when that care is provided.

Most personal care agencies that contract with Medicaid are able to send aides to their clients' homes only during the workday, and only during the week. This means that their clients must receive care when it is available instead of when they actually need it. For many people who need help getting in and out of bed or getting their meals, this means getting up late in the day, having meals at odd times, going to bed before the sun goes down, and going without services on the weekends.

Even though personal care aides help their clients with intimate personal hygiene activities, they usually are strangers to their clients. And a client usually is unable to choose which of the agency's aides comes to her home.

HOW DOES ARKANSAS BENEFIT?

Currently, Arkansas spends 20% of its Medicaid budget to help adults with chronic disabilities get the services they need at home, but many still go without sufficient help. Arkansas is very large but has few cities -- nearly half of its residents live in isolated, rural areas. This creates a difficult challenge for personal care agencies, whose employees must travel long distances between clients' homes. Agencies also are hindered by their inability to hire enough workers -- low unemployment rates have tightened the competition for minimum wage workers like personal care aides.

IndependentChoices is an opportunity to test a new way of helping people in their homes -- a way that may be more flexible, more accessible, and may not cost any more than traditional agency services. And in allowing participants to hire relatives or friends, the program eases the burden on overloaded personal care agencies, which must sometimes place those who contact them for immediate help on a waiting list for services.

ARKANSAS' INDEPENDENTCHOICES PROGRAM

2,000 participants will be enrolled in the demonstration program -- half are being randomly assigned to the "treatment' group, which receives the monthly cash allowance, and half to the "control" group, which continues to receive traditional personal care services from an agency.
Participants will be enrolled in the experimental program for a minimum of two years.
Participants must be 18 years of age or older, already enrolled in Medicaid, and require personal care services. A typical IndependentChoices participant is an elderly, white woman who lives alone in her rural home and has a monthly income of less than $500.
The state provides participants with a monthly cash allowance based on the number of hours of personal care that they require each week, as determined by a medical professional. The average monthly allowance is $350.
Counselors help participants develop a spending plan. These counselors check in with participants on a monthly basis, and are always available to them by phone.
Participants become employers when they hire a personal care aide. Bookkeepers are available to help participants with the paperwork required to pay an employee's wages and withhold taxes.
Counseling and bookkeeping services are provided to participants by a single agency. Depending on where they live, participants are assigned to one of the two agencies that contract with the state to provide these services.
Participants who can not or do not want to make the decisions regarding how to spend their allowance can rely on a representative decisionmaker -- such as a relative or friend -- to help.
The Health Care Financing Administration (HCFA) granted the Arkansas Department of Human Services a demonstration waiver to implement IndependentChoices. HCFA requires IndependentChoices to be "budget neutral," which means it can not cost any more to run the program than it would to have its participants enrolled In traditional services.

Mrs. Lillie Brannon
North Little Rock, Arkansas

When Lillie Brannon was 16, she hitchhiked with her widowed father from her native state of Oklahoma to Arkansas, which has been her home ever since. That was more than 70 years ago. Today, Lillie is 88 and never leaves her home, except to go to the doctor or the hospital. The woman who, at one time or other in her life, worked as a cotton picker, a wood chopper, a peach grader, and a nanny, now can't get around on her own. She can't cook her own meals, can't bathe herself, or get herself into or out of bed. She spends her days in an easy chair in her living room and her nights in bed, assuming she has help moving from one to the other at the beginning and end of each day.

But don't be fooled by Lillie's need for assistance; she still knows how to take care of herself, even if she can't manage it physically. She is every bit as strong-willed and independent as the young girl who took to the road with her dad, which is why she still chooses to live alone in her own apartment. And it's also why she was one of the first people to enroll in IndependentChoices. She likes to tell people: "I've been in four nursing homes, and I've escaped every one of them."

Lillie uses her $662 monthly allowance from IndependentChoices to pay Barbara Ward, a former aide who's become "like a daughter," to visit her daily and help her with getting out of bed, bathing, dressing, preparing meals, and some housekeeping. "Barbara will come any time I call," says Lillie. Barbara averages about six hours a week working for Lillie, but she can only help out in the day time during the week, so Lillie is currently training another personal care aide to assist her around Barbara's schedule. Lillie also pays a family friend to do her grocery shopping once a week and plans to hire her 67-year-old son, David, to help her out a few times a week. And she uses part of her allowance to buy personal care items like facial tissue, bath tissue, and over-the-counter medications.

"I like being able to have a say in who comes here and cares for me," says Lillie. "It's important to get someone -- who's on the ball and can do the job."

The Stoufer Family
Fort Smith, Arkansas

When David and Elva Stoufer got married, they had eight grown children between them. When the youngest of those left home, the Stoufers decided to adopt a child "because life is just more fun with children." But they didn't stop at just one. They adopted three children, each of whom has a disability and must a wheelchair. Michael and Guillermo (or "Memo" as he is called) both have spina bifida, and Lisa was born without arms or legs.

Michael, Memo, and Lisa are all in their early 20s now and -- despite their need for daily personal care -- very independent. All three attend classes at a local junior college and are preparing for careers in the computer field. Michael and Memo play in a wheelchair basketball league. Michael is the funnyman among them ("I'd like to be a stand up comedian, but I can't stand up!"), Memo is quiet and gentle, and Lisa is the honor student, driven to succeed. She has turned her mouth into an asset that makes up for the deficiencies of her body -- she uses it to write, dial the telephone, operate her wheelchair and her computer, and sing. Her singing voice is so lovely that she was invited to perform "Unchained Melody" onstage with The Platters in Branson, Missouri.

"My kids have never asked why God did this to them," says their dad, David.

These are not people who want to live with Mom and Dad for the rest of their lives. But for now, that's what they're doing. AR three are participating in IndependentChoices and they've each hired their mom as their personal care aide. Elva and David have always been the ones to take care of the kids -- even though they both had full-time jobs. Elva worked in a hospital and David was a salesman. IndependentChoices has made it possible for Elva to stay at home with the kids as their full-time employee -- a fact that Michael can't help but tease her about. Every day, Elva helps her three adult children get out of bed, bathe, use the bathroom, and get dressed. She gets their meals for them when they're home and she helps them get to bed at night -- a time-consuming task that is becoming a source of conflict because three 20-something adults usually don't want to go to bed as early as their 60-something mother.

Mr. Scott Ross
Little Rock, Arkansas

Scott Ross is a 42-year-old man who can take care of himself. Of course that's not unusual, but Scott also has physical disabilities. He is blind -- his blue eyes are prostheses. He lost his left leg to amputation and has had a liver transplant. He also has diabetes and heart disease. He needs a little bit of help with some everyday activities, but he'd prefer to hire his own help and make his own choices about who he gives his house key to. These are perfectly reasonable preferences for an independent adult -- preferences that couldn't be accommodated before he enrolled in IndependentChoices.

Scott is appreciative of the flexibility that IndependentChoices offers him. Not only can he hire his own personal care help -- usually friends he trusts -- but he's also been able to use his allowance to make purchases that enhance his ability to live independently. Scott saved part of his allowance to purchase a washing machine for his apartment because he felt vulnerable going to the Laundromat alone at night. He also used his allowance to purchase a bed because he had been sleeping on the floor.

Scott's purchases mean that he has less money left from his $394 monthly allowance to hire his friends to help him with daily personal care activities, but he's found a way to make the money go farther. He used to be employed as a professional massage therapist, so he sometimes barters for his friends' help by trading on his massage skills.

"I feel a lot more comfortable with my friends helping me out," says Scott, who has had some unfortunate experiences with personal care aides taking advantage of his blindness. "It's not good sense for a blind man to hand his keys over to people he doesn't know. And now I can be sure that the things I need to have done are really getting done."

Mrs. Janice Maddox
Pine Bluff, Arkansas

Mrs. Maddox -- whom her loved ones call "Big Momma" -- is 74 years old and requires significant help with her personal care needs. She has diabetes, glaucoma, and has had several major operations and possibly several strokes that have confined her to a wheelchair. She can't do much for herself and must have help getting in and out bed, dressing, bathing, attending to her dietary requirements, taking her medications, and keeping up with the housework. But despite her physical frailty, Mrs. Maddox possesses a tremendous asset: an extensive support network of friends and family that want to help her continue to live independently.

Mrs. Maddox is a widow, but she is surrounded by family. Her many children, grandchildren, great-grandchildren, siblings, and extended family, including neighbors, provide a continual stream of sound and motion for Mrs. Maddox to watch bemusedly from her wheelchair. And when no one is coming or going, the wall of family photos that dominates her living room is a constant presence to keep her company. For five years, Mrs. Maddox received personal care services from aides that were sent to her home by an agency that contracted with Medicaid. Then her daughter read about IndependentChoices in the newspaper. Mrs. Maddox enrolled, but because she isn't comfortable making her own arrangements for care, her oldest daughter, Johnetta Thurman, became her representative decisionmaker.

"There's just something about having family look after her," says Johnetta, who lives in Chicago and travels frequently to Arkansas to make sure her mother's needs are being met. "She doesn't get nearly as many allergic reactions or bed sores now, and I think that's because when it's your own you're looking after, you pay more attention."

Mrs. Maddox' $413 monthly allowance is used to pay her 28-year-old granddaughter, Keisha Long, to spend at least two hours a day, seven days a week attending to Mrs. Maddox' needs. Her allowance is also used to pay her grandson $10 a week to do odd jobs around the house like mow the lawn, make repairs, and bathe Mrs. Maddox' dog, Jazzy J. And the allowance helps pay for over-the-counter medications and toiletries. Johnetta also has put some of the money to more creative use: part of it helped to pay for her mother's new dentures.

DOES INDEPENDENTCHOICES WORK?

IndependentChoices is a bold experiment that may change the way personal care services are provided to people who want to direct their own care. it -- along with the other Cash & Counseling demonstrations in Florida and New Jersey -- seeks to answer some fundamental questions about new ways to deliver personal care services at home to people who need them, including:

Can a cash & counseling program meet the personal care needs of both younger and older people with disabilities?
Can such a program also succeed with elderly Medicaid clients who require home-delivered personal care services to live independently
Can a successful cash & counseling program serve as a model that can be transferred to other states?
What are the implications of a successful cash & counseling program for other populations, such as people with disabilities who are privately insured?

In Arkansas, the answer to the first two questions appears to be "yes." IndependentChoices is being regularly evaluated throughout the demonstration period by Mathematica Policy Research, Inc. Preliminary data and anecdotal evidence indicate that participants and their families are very satisfied with IndependentChoices. A more extensive and conclusive evaluation will be completed at the end of the demonstration period in 2002.

Definitive answers to all four questions are still several years away, but Arkansas has taken that first, giant leap forward into the realm of new possibilities -- a leap that may someday restore some measure of personal freedom and independence to millions of Americans.

For More Information:

IndependentChoices, Division of Aging and Adult Services, Arkansas Department of Human Services, PO Box 1437, Slot 1412, Little Rock, AR 72203-1437, (501) 682-2441, www.independentchoices.com

Cash & Counseling Demonstration Program, University of Maryland Center on Aging, 1240 HHP Building, College Park, MD 20742-2611, (301) 405-2548, www.inform.umd.edu/aging

Arkansas' IndependentChoices program is part of the national Cash & Counseling Demonstration Program, which allows Medicaid clients who require personal care services to purchase those services using a cash allowance. Demonstration programs are also underway in Florida and New Jersey.

The national Cash & Counseling Demonstration program is based at the University of Maryland Center on Aging, and is sponsored by:

Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
and
The Robert Wood Johnson Foundation

In addition, the Health Care Financing Administration granted 1115 Research and Demonstration waivers to Arkansas, Florida, and New Jersey to implement cash & counseling programs and provides those states with continuing oversight.

Credits:

Writing: Teri Larson, Burness Communications
Photographs: Kelly Quinn
Design: Jason Salas Design

This brochure available from Arkansas Department of Human Services, Division of Aging and Adult Services, P.O. Box 1437, Slot 1412, Little Rock, AR 72203-1437, Tel: 501-682-2441, Web site: www.independentchoices.com

Making Hard Choices: Respecting Both Voices

Lynn Friss Feinberg, MSW, Principal Investigator
Family Caregiver Alliance

Carol J. Whitlach, PhD, Co-Principal Investigator
Shandra Tucke, MS, Project Coordinator
The Benjamin Rose Institute
May 2000

EXECUTIVE SUMMARY

Families play a central role in both the decision making and delivery of long-term care to adults with cognitive impairment (e.g., Alzheimer’s disease, stroke, Parkinson’s disease, traumatic brain injury). Losses of cognitive and functional abilities affect the individual and his or her family in profound ways. One of the most difficult problems a family caregiver faces is making decisions in “everyday” long-term care at home for a loved one whose capacity for planning and judgment may be impaired. Often conflicting factors must be weighed: “What is my wife’s potential risk or harm to herself or others?” “How do I weigh her wish not to let anyone in the house to help out, with my need for help because of my increasing exhaustion?” Deciding when to bathe, what to wear, whether to purchase and use support services (e.g., adult day services), or when to accept care from family members are examples of everyday care situations. In practice, it is oftentimes difficult to separate the needs, preferences and best interests of the person with dementia from the needs, preferences and best interests of the family.

This research explored choice and decision making in everyday care for persons with cognitive impairment and their family caregivers. This study differs from previous research on decision making by its focus on: (1) a community-dwelling, cognitively impaired population; (2) the dyad, i.e., the person with cognitive impairment and the family caregiver; and 3) the exploration of values, preferences and decision making for daily care. Given the aging of the population, the concomitant increase in the number of persons with cognitive impairment, the high costs of care, and the trend towards earlier diagnosis and new treatments to delay decline of dementing illnesses, understanding both voices--the person with cognitive impairment and the family caregiver--will advance the state-of-the-art in practice, research and public policy.

Method:

Respondents were 51 persons with cognitive impairment and 51 family caregivers. The respondent pairs or dyads (i.e., adult with cognitive impairment and the family caregiver) were recruited from Family Caregiver Alliance’s (FCA) client lists in the San Francisco Bay Area and outreach to local agencies. To be eligible, family caregivers had to be: (1) the spouse or adult child of the person with cognitive impairment; and (2) the primary caregiver. The person with cognitive impairment (i.e., the care receiver) had to meet the following inclusion criteria: (1) have a confirmed diagnosis from a physician of an adult-onset brain disease/disorder; (2) be living at home (i.e., living in the community rather than an institutional setting); and (3) be mildly to moderately cognitively impaired with scores between 13 to 26 as measured by the Folstein Mini-Mental State Exam (MMSE).

Three in-depth, in-person interviews were conducted per dyad. Experienced and trained research staff interviewed the caregiver and care receiver separately. The interviewing sequence and process was as follows: the person with cognitive impairment was interviewed first. Within one week, the family caregiver was interviewed and the person with cognitive impairment was interviewed a second time. Data collection began in July, 1998 for 10 months through April, 1999 to achieve a final sample of 51 dyads (3 interviews per dyad or 153 total completed interviews).

Sample:

Caregivers (n = 51) were predominantly wives (56.9%) and daughters or daughters in-law (21.5%), followed by husbands (11.8%) and sons (9.8%). Thus, more than two-thirds (68.7%) were spouses and one-third (31.3%) were adult children caring for a parent or parent-in-law. Caregivers were on average 63.5 years (SD = 14.6, range 30-90 years) although over half (51%) were at least 65 years of age or older, and most likely to be female (78.4%). Most caregivers were white (78.4%), married (80.4%) and about one-third were in the labor force employed either full-time (17.6%) or part-time (15.7%). Overall, the educational level of the family caregivers was high, with the large majority having at least some college education (84.3%). Most caregivers (23.5%) reported annual family income between $40,000 and $49,000 a year (1997 dollars). On average caregivers had been caring for their relatives for 3.1 years (SD = 3.4, range 1-23 years) and provided 80 hours of care per week (SD= 50.8, range 7-168 hours).

Care receivers (n = 51) were most typically husbands (58.8%), followed by mothers or mothers-in-law (21.5%), fathers (9.8%) and wives (9.8%). The average age of the care receivers was 75.6 years (SD = 10.0, range 39-89 years) although nearly nine out of ten (88%) were at least 65 years of age. The majority of care receivers were male (68.7%) and married (78.4%). The most commonly diagnosed brain disease/disorder was Alzheimer’s disease (51%) followed by other dementias such as Frontal Lobe, Lewy Body or Vascular dementia (13.7%), stroke (11.8%), non-specific dementia (9.8%), Parkinson’s disease (7.8%), non-degenerative brain disorders such as Anoxia (3.9%) and traumatic brain injury (2%). The average MMSE score of care receivers was 20.8 (SD = 4.06, range 13-26), with two-thirds (67%) considered mildly cognitively impaired (MMSE scores 20-26) and one-third (33%) moderately cognitively impaired (MMSE scores 13-19). Care receivers also had a high educational level with most (68.6%) having at least some college education.

Key Findings:

Are persons with cognitive impairment able to communicate their preferences for the care they are currently receiving or will need in the future?

Persons with cognitive impairment were able to answer questions about demographics, general preferences, and involvement in everyday care with a high degree of reliability (i.e., at two points in time) and validity (i.e., accuracy).
Similar results were found when care receivers were split into three groups based on high, medium and low MMSE scores with very few exceptions.

What is the decision-making process between adults with cognitive impairment and their family caregivers?

Care receivers were able to choose a person, most commonly the family caregiver, to make a variety of decisions for them should they no longer be able to make decisions for themselves in six areas: health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home.
Care receivers reported discussing their daily care wishes more than their nursing home wishes with their family caregivers, yet also felt their caregivers knew their wishes for daily and nursing home care equally well.
Caregivers felt they had discussed the care receiver’s wishes equally for both daily and nursing home care, yet also felt they knew the care receiver’s wishes for daily care better.

How does the availability and use of information and services, as well as the quality and cost of care, facilitate and/or impede family decision making related to the cognitively impaired adults’ everyday care?

The majority of the caregivers (84.3%) reported having used some type of paid service provider since the care receiver had been diagnosed with memory problems.
The three services most utilized by caregivers were information about the care receiver’s illness (65%), caregiver support groups (55%), and help with housework, shopping, laundry or cooking (53%). The three least utilized services were the Internet (14%), education classes for the caregiver (20%), and help with managing financial or legal matters (22%).
Service availability, affordability, and satisfaction were unrelated to the amount of discussion between the caregiver and care receiver about daily care wishes. However, the more satisfied a caregiver was with formal service usage, the less likely s/he was to have discussed nursing home care with care receiver.
Overall, family caregivers reported low levels of financial strain and believed they had enough money at the present time to cover the costs of care. However, more than one-third (38%) of the caregivers either said they had “just enough” or “not enough” money to make ends meet at the end of the month.
Care receivers with family caregivers who had higher financial strain reported feeling that their caregivers did not know their wishes for daily care.
The care receivers’ five top ranked values and preferences in aspects of daily life were related to the environment/safety and family caregiver issues: “Have a comfortable place to live” (Environment/Safety), “Have caregiver be the one to help out” (Family Caregiver issues), “Live in own home” (Environment/Safety), “Feel safe in home, even if it restricts activities” (Environment/Safety), and “Caregiver not put life on hold” (Family Caregiver Issues).
The majority of the persons with cognitive impairment said that it was very important to them to remain at home (78%) and not to live in a nursing home (73%).
Caregivers were fairly inaccurate in their perceptions of the importance of the care receiver’s values and preferences. Significant differences were found for 20 of the 36 values and preferences. Typically when there were significant differences, the care receiver placed greater importance on the item than the caregiver thought they did. For example, persons with cognitive impairment felt that “feel safe in home, even if it restricts activities” was significantly more important than caregivers felt it was to the care receiver.
The highest ranked values and preferences subscale for both the care receiver and the caregiver was Family Caregiver Issues, followed by Environment/Safety.
Care receivers and caregivers were congruent in their responses that the domain of Environment/Social Interactions (e.g., have a comfortable place to live, be with family or friends) was most important and significantly more important than the domain of Autonomy/Self Identity (e.g., do things for self, maintain dignity).

Is there congruence between the preferences of the adult with cognitive impairment and the needs and practices of the caregiver?

Care receivers were asked who they would like to help them (i.e.,family/friends, service providers, no preference) with specific tasks (i.e., shopping and cooking, laundry and housecleaning, getting up and dressing, bathing and toilet care). For all tasks, the care receivers preferred help from family/friends to paid services.
Caregivers were asked whether or not they were using paid help for the specific tasks (i.e., shopping and cooking). For each task, the majority of the caregivers’ needs and practices were congruent with the care receivers’ preferences. Caregivers had not used services when the care receiver preferred help from family/friends. Similarly, the caregivers had used services available in the community when the care receivers preferred help from service providers.
There was no association between how much the dyad had discussed the care receiver’s wishes for daily care and the level of congruence between the care receiver’s preferences and the caregiver’s needs and practices.

When there is a lack of congruence, whose wishes prevail and how does this influence service use patterns?

Care receivers and caregivers were asked to rate the importance of their own and their relative’s best interests when thinking about making daily care decisions in the future. Both the person with cognitive impairment and the family caregiver felt it was more important to consider the best interests of the other member of the dyad above their own best interests.
When all the questions about “best interests” were combined, however, the best interests of the person with cognitive impairment was considered more important than the best interests of the family caregiver.
The more important the care receiver considered his/her own best interests, the better the caregiver knew his/her wishes for daily care. This was particularly apparent in dyads with adult child caregivers. For these dyads, the more importance the care receiver placed on his/her own best interests, the more the adult child knew about their parent’s wishes for daily care.
The more a dyad disagreed on whether or not to use support services, the fewer services the caregiver actually used.

Discussion:

The most salient findings of this study indicate that persons with mild to moderate cognitive impairment are able to: (1) state consistent preferences and choices; (2) provide valid responses to questions about demographics and their own involvement in everyday care; (3) participate in care decisions; and (4) express life long values and wishes regarding care they are currently receiving or will need in the future.

Many of the questions asked of the persons with cognitive impairment requested that they provide the name of the specific person(s) they would like to make decisions for them if they were no longer able in the areas of health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home. The care receivers overwhelmingly preferred to pass decision-making responsibilities on to family members. In almost all cases (93%), the identified person was the family caregiver or another family member.

Results suggest that caregivers and care receivers are discussing the care receiver’s wishes for both daily and nursing home care. However, there are more discussions about daily care, likely because these families are dealing with the day-to-day challenges of caring for a person with mild to moderate cognitive impairment. But as our findings indicate, more frequent discussions do not necessarily translate into a better understanding of or agreement with the care receiver’s preferences for all types of everyday care.

Service availability, affordability and satisfaction with service use were found to be unrelated to the amount of discussion between the caregiver and care receiver about daily care wishes. However, the more satisfied a caregiver was with home and community-based services, the less likely s/he was to have discussed nursing home care with the care receiver. Conversely, if caregivers were unsatisfied with services, they appeared more likely to move to discussions about nursing home placement. Thus, our findings support the importance of an accessible, affordable and quality home and community-based system to meet the long-term care needs of people with chronic degenerative diseases.

Study results reveal the potentially negative effects of financial strain on the dyad’s level of congruence on both knowledge of and agreement with the care receiver’s daily care wishes. Although caregivers reported low levels of financial strain overall and believed they had enough money currently to cover the cost of care, those who experienced higher financial strain were less likely to know the care receiver’s wishes for daily care. Families experiencing the multiple and long-term stressors of caregiving may find that discussions about the care receiver’s daily care wishes are not a priority. Instead, they are worrying about how they are going to get through each day. Care receivers who feel their caregiver is experiencing financial strain may not want to “make matters worse” or more stressful for the caregiver so they do not make their preferences known. Unfortunately, if these issues are not discussed then the dyad will not be able to do advance planning, which, in the long run, could cause increased strain and impoverishment for the family.

Lastly, in this study the MMSE was not found to be a sensitive measure of competency relating to decision making. While the MMSE is widely used to screen for cognitive function, it does not determine decisional capacity. In discussing the interviewing experience with the research interviewers, they felt that some of the care receivers who screened out on the MMSE because of low scores would have been able to participate in this study and express valid and consistent preferences.

Practice Implications:

The study results suggest that persons with early to moderate cognitive impairment may well possess the capacity to express daily preferences for care, and should be encouraged to discuss their values and preferences with their family caregiver. In turn, this would assist family members by helping them to better understand the wishes and preferences of their loved ones earlier in the disease process before they, the family caregivers, inevitably must make difficult and often agonizing day-to-day long-term care decisions.

The findings suggest the need for incorporating a values assessment as part of interventions to improve education and enhance communication between the care receiver and the family caregiver around the issues of daily care preferences at home, as well as residential and nursing home settings. Caregivers do not fully understand the care preferences of their relative and often have inaccurate perceptions of the care receiver’s preferences and choices for everyday care. Thus, it may be helpful in counseling sessions, for example, to enhance the family’s decision-making skills by identifying and encouraging early conversations about the care receivers’ values and preferences for current and future daily living which are mutually acceptable to the family caregiver.

Our findings on values and preferences suggest that the primacy of personal autonomy may not be of critical importance to the person with cognitive impairment. Rather, the reciprocal nature of daily care decisions fosters interdependence within the family. This view of autonomy acknowledges a consumer-directed focus whereby the care receiver decides who they want to make and carry out activities in their place.

The assessment of values and care preferences and discussions about decision making are, practically speaking, difficult and challenging for families to undertake. Yet, ignoring the decision-making process between the caregiver and care receiver, and postponing discussions about the values and preferences of the person with cognitive impairment could have negative consequences for both members of the dyad over time. For many family members, knowing their loved ones’ wishes for daily care could reduce the strain in developing and implementing a plan for future long-term care services.

Policy Implications:

The findings of this study support the policy direction of utilizing a family systems approach whereby the person with cognitive impairment and the family caregiver are considered legitimate “consumers” of long-term care. A family systems approach would expand current practice by assessing: (1) the care receiver’s values and preferences for everyday care, rather than relying solely on information from the “proxy” or “surrogate,” who typically, is the family caregiver; and (2) the family caregiver’s situation, well-being, and need for targeted support services (e.g., respite, counseling).

Long-term care systems development, therefore, should incorporate the concept of family caregiving, rather than focusing exclusively on the care receiver when cognitive impairment is an issue. Few programs adequately address this critical policy area of supporting family caregivers to maintain their own quality of life.

Lastly, in this study, the person with cognitive impairment or “consumer” was able to answer questions that reflected an ability to delegate responsibility for directing aspects of care when he or she is no longer able to do so. In other words, the care receiver was able to make a consumer-directed choice to have a family member acting as a “consumer” on his or her behalf. This is particularly important in home and community-based programs where the goal of practitioners, for example, may be to maintain the well-being of the family caregiver so that they can continue to provide care to the person with cognitive impairment and honor the care receiver’s preferences to live in their own home.

Conclusion:

This study aimed to recognize the roles of both persons with cognitive impairment and their family caregivers with regard to everyday care preferences and decisions. Our research adds to the growing body of evidence that persons with early to moderate cognitive impairment are able to articulate values, preferences and choices for themselves, and be valid and reliable in their responses.

The challenge is to educate policymakers, practitioners and researchers to take into account the views and preferences of the person with cognitive impairment and the needs and situation of the family caregiver. How to balance divergent perspectives will continue to be a challenge for those who work with persons with cognitive impairment and their family caregivers. By recognizing and respecting both voices--the care receiver and caregiver--we can enhance future research and practice, foster the development of consumer direction in long-term care and advance public policy to support caregiving families.

Increased understanding of the preferences of the person with cognitive impairment will improve the decision-making process, lead to more informed decisions, and reduce the strain on family caregivers and associated health costs. It is, after all, family caregivers, who are today and will continue to be in the foreseeable future, the major providers of long-term care and who will, ultimately, be left with the experience of implementing these challenging and difficult everyday care decisions.

The report is available from Family Caregiver Alliance, 690 Market Street, Suite 600, San Francisco, CA 94104, Tel: 415-434-3388, Fax: 415-434-3508, E-mail: info@caregiver.org, Web site: http://www.caregiver.org/publicationsC.html.

Making Self-Determination Work

Charles Moseley, EdD, Co-Director
National Program Office, Self-Determination for People with Developmental Disabilities

In 1996, the Robert Wood Johnson Foundation (RWJ) provided funding to 19 states to develop and implement a new approach to supporting people with developmental disabilities. Entitled "Self-Determination," the concept is based on the premise that control over the services and supports that are offered to people with developmental disabilities should rest with the person receiving those services. State-of-the-art approaches to supporting people with developmental disabilities have long advocated the direct involvement of the individual receiving supports in the development of his or her plan of care. Self-determination takes the next step by placing final authority over the nature, extent and duration of services with the consumer. This approach differs significantly from the funding and decision making structure traditionally employed by state and local agencies responsible for assuring service delivery by including the individual as the primary decision maker in the process.

The overall objective of the RWJ initiative is to change state service delivery systems to actively support, encourage, and enable people to directly control the services they receive and the resources provided on their behalf. For some people receiving services, this change means taking active control over all aspects of their support system; budget, record keeping and supervision of support providers. Others, in contrast, may elect to assume direct control over a part of the supports they receive and may delegate responsibility for other aspects of their program to various individuals or members of their support team. The choice rests with each individual, his or her guardian/family and those he or she has chosen to rely on for assistance. Restructuring a system to enable those receiving support to "have it their way" means changing virtually all of the components of the current system to a greater or lesser extent. Implementation of self-determination, for example, will typically face different challenges for states with traditional, highly centralized systems that allocate funds through regulated rate setting formulae, than it will for states with more decentralized community systems that use comparatively flexible individual funding procedures.

To develop an understanding of the strategies that projects have found to be effective, an e-mail survey was recently sent to the project coordinators of each of the 19 states that received funding. Fourteen of the coordinators responded. The survey asked each person to briefly list five strategies that they used to implement self-determination over the past couple of years that really seemed to work, and five strategies or actions that did not seem to work very well.

Project administrators provided information regarding the approaches they use to cause change; tactics that bring about the intended results and those that are less productive or slow the process. Although the responses vary between states, there are several themes that are consistent in the answers received. The following are listed in order with the most frequently cited listed first.

WHAT WORKS

Effective System Change Strategies:

Project coordinators credit the use of a particular strategy to bring about change as a key factor in the success of their initiatives. Components of successful strategies include:

Project flexibility: Not dictating a specific way to implement. But letting the [local] sites implement based on their own 'readiness' levels and their own resources.
The reliance upon identified staff or contact people to lead the change process.
A one person at a time approach that focuses on individuals rather than programs.
Implementation through pilot projects designed to test new structures, policies or practices before they are brought to the full system. Pilot sites have used the grant to set up lab situations. They then take what they have learned...and change the way they deliver services for everyone at the agency.
Implementation through system-wide reorganization that changes the structure and functioning of the entire developmental disabilities service system to enable people to self-determine. We looked at this initiative not as a pilot or demonstration, but as a new way of doing business, creating a system available to EVERYONE and not only to some in the system.
Conceptualizing change as the development of a long-term capacity to support individuals in their own communities, rather than as a project designed to accomplish short term objectives.
Addressing change from the bottom up and top down by focusing on both the individual and state policy administrators at the same time, from the grassroots to state officials to legislators. Or, as another project coordinator put it, Understanding that in order to promote self-determination for the people served by the system, we also have to promote the self-determination of all who are involved with the system in some way -- staff, family members, providers.
Changing rules and regulations when they got in the way or did not adequately support self-determination.
Consciously communicating a clear sense of purpose, identifying short-term goals and achievements.

Regardless of whether states implemented self-determination through broad based system change initiatives, or more localized pilot projects, coordinators attribute the success to the presence of a planned strategy to bring about change.

Bringing People Together in Coalitions to Advise, Plan, Train and Educate:

Project coordinators stress the importance of developing strong coalitions by combining the efforts of the project staff with those of self advocates, families and providers to jointly address concerns and build common agendas. Key activities mentioned include:

Involving people with disabilities and families in discussions and activities, from the beginning,
Developing new partnerships with providers around self-determination and,
Relying upon integrated groups comprised of representatives of all stakeholders to bring about system change.

One project coordinator put it this way, using these integrated groups, which we have done for virtually every task and process we have addressed through the project, [has been] invaluable in redefining how people see people with disabilities, and each other, and in building the consensus necessary to move the project forward. Another respondent identified the importance of including other groups as partners in the change process, noting that the state director of the Division of Developmental Disabilities Services worked to form a powerful guiding coalition, [developing] bonds between advocacy, provider, families, self-advocates and state folks to push for systems reform. Another project coordinator indicated they involved people with disabilities, families and providers from the beginning by hiring people representing each group to provide training and technical assistance on self-determination and to facilitate the change process. [We have been] using the trilogy model of technical assistance: consumers, families, and providers to provide information, training, problem solving, in system change activities.

Providing Training:

Project coordinators emphasize the importance of training at all levels and at all times during the project as a key feature of the success they experienced. One person put it this way: Train, train, train. At every opportunity and juncture we provide training. Sometimes we repackage the same ideas -- it takes awhile for all of us to get it -- particularly those who are certain they've got it, but don't.

Coordinators note that training is particularly effective when it is inclusive, utilizing presentations and activities that involve stakeholders in all sessions from the beginning. They also emphasize that training is most effective when it is value based, relating the content to the core principles, philosophy and goals of self-determination, and when it demonstrates a commitment to self-determination by utilizing people with disabilities and families as trainers. Some state that they find the use of "external experts" in training particularly effective, while others less so, depending on the nature of the message and the audience (see below). One project coordinator credited the development of an "Educational Tool Box" used by advisory team members and staff to conduct presentations to ten different target groups on the values of self-determination as particularly effective.

Training is seen as important, not only because it offers the opportunity for families, staff and individuals with disabilities to learn new ideas and the issues involved in self-determination, but also because it communicates the expectations of the state regarding change. One project coordinator wrote, People needed to hear what was expected of them in a self-determined system, and needed to hear that they had permission to proceed.

Employing Effective Communication Strategies:

Project coordinators state that their ability to achieve successful project outcomes is significantly strengthened by the use of effective communication strategies, including:

Like talking to like: Coordinators note that information is received more readily and with less resistance when it is communicated by a member of the individual's own group. Providers, for example, are more likely to accept information from other providers; families from other families and self-advocates from other self-advocates. The value of locals communicating with locals, was also stressed as being more effective than having information exclusively come from someone from the state central office, or another community.
Sharing stories across the state: People want to know that they are a part of a broader effort that involves people in different communities. Sharing individual stories of how people in other parts of the state cope with issues, experience success or answer similar questions is described as a particularly effective way of spreading the message of self-determination.
Establishing a sense of urgency: One project director stated they consciously communicated a sense of urgency around their state's efforts to change the system to adopt principles of self-determination through the language of key administrative staff and the pacing of the change process.

Including Self-Determination Principles in Legislation, Regulations, Policy, Planning, and System Redesign Activities:

Many project coordinators identify the importance of including the principles of self-determination by specific reference in statutes, regulations, policies, procedures and planning documents as central to the success of their efforts. Regulatory change was used to ensure people receiving services have the clear authority to control the funds allocated in their behalf, to access the individual supports they need or to ensure a person-centered planning process. One director credits recently passed legislation that charges all agencies to explore the use of Fiscal intermediaries and vouchers to purchase services, such as personal assistance services, respite care, etc., so that people ...will have more control over the services they receive as well as the providers, as having a significant impact on the ability of their project to move ahead.

Effective Financial Strategy:

Several project coordinators identify the presence of a creative and effective financial strategy as another component of the successes they experienced. The development and/or use of an independent financial organization (fiscal intermediary, independent services organization, administrative services organization, etc.) separate from the regular service delivery system is cited as an effective way to enable people to control the resources provided for their support and to provide assistance with accounting, employment and record keeping.

Additional Strategies for Change Identified as Successful Include:

Focus on local communities and issues: Supporting community decision makers to take an active role in local implementation efforts.
Working across organizational boundaries to forge new relationships state departments, agencies and community organizations not typically involved with services for people with developmental disabilities,
Freedom to be flexible and experiment,
Direct involvement of project staff in top level division and department management meetings.

LESSONS LEARNED: THINGS THAT GET IN THE WAY

Many project coordinators point out that the strategies they identified as not working do not represent activities or approaches that failed outright or had not been productive in any way, as much as they are methods that offered only limited success, tactics that needed to be improved upon, or areas that require additional attention. An approach listed by one project as particularly effective, may prove less so for another. For example, while some projects found the changing of regulations to include reference to self-determination to be a successful strategy, others believe the absence of regulations provides them with the freedom to experiment and try out new ideas. Still others, mentioned that some consumers found the absence of regulations unsettling, believing it made the system less predictable and less accountable.

Involve Stakeholders from the Beginning:

Project coordinators stress the importance of involving people with disabilities, providers, families, and others from the beginning as a key to successful implementation. They also note the lack of such involvement to be a key deficit. People state that implementation of their projects was held back when the various constituent groups were not involved in a coordinated fashion from the beginning, when people felt they had been left out of the communication loop, or when they were not directly involved in key planning activities. Providers, in particular, needed to be involved in discussions of system design and planning from the early stages. One coordinator put it this way: attempts at system change which have not involved all the stakeholders have often come back to cause problems later, with those excluded feeling as if something is being done to them, rather than with or for them. She notes that this was especially true of providers.

Getting people together, however, is only half of the battle. Each of the various groups comes to the table with their own agendas. Communication can become challenging when, as one person commented, some don't want to play the game or collaborate with others. Several of those responding to the survey note that it was frequently difficult to help participants and families really took outside the box to new alternatives that might be available and to bring stakeholders to an agreement on key structural and philosophical issues. Finally, coordinators identify the need to learn and respect particular preferences for involvement that exist among the various groups. For example, self-advocates in one state preferred to work locally in their own communities, rather than on a statewide basis.

Develop Effective Communication Strategies:

Several coordinators identify communication as an area that requires considerable attention. Progress goes smoothly when communication between all stakeholders is good, and is hampered or stops altogether when communication breaks down. Coordinators state that it is important to spend enough time with groups to make certain they understand the purpose and goals of the project, and identify the lack of such attention as a barrier to success. As one director put it, communicate, communicate, communicate. Nature abhors a vacuum. If there is not enough correct information, rumors run wild. People feel left out -- like things are being done to them instead of with them. Other project coordinators note that everyone needs to hear the same thing at the same time, that the speakers who are brought in must have credibility with stakeholders and must be able to speak to their audiences in a manner and using terms they understand and accept. One coordinator notes that training does not provide people with vision, and attention needs to be placed on the use of communicators who can inspire people to see the potential of self-determination.

Address the Need to Manage Dual Systems:

Whether sites are implementing self-determination as a pilot project or as a part of a broader system restructuring activity, the process is not being accomplished in isolation. A consistent theme in the responses referred to the difficulty of achieving results while working within the structure of the traditional system with simultaneous, and at times competing, responsibilities to manage both effectively. Project coordinators describe how hard it is to place new approaches into practice within the context of multiple system change activities that are occurring in their states, departmental restructuring, new managed care initiatives, and other day-to-day operational activities that pull time and attention away from their efforts to develop self- determination.

One project coordinator, for example, worried that the success and attractiveness of the pilot project would pose difficulties for the rest of the department as people begin to request supports that redirect control from the traditional system before it is equipped to adequately respond. He was concerned that the department would be "blindsided" by providers or others who have an interest in keeping things the way they are and do not want to change.

Coordinators additionally mentioned that some providers and families are confused and threatened by the lack of regulations regarding self-determination and the acceptance of a new approach that does not have clear expectations regarding roles and responsibilities.

Clearly Define New Roles and Responsibilities:

Self-determination is typically being implemented by changing existing systems, rather than by creating totally new ones. Job descriptions are being re-written as the roles and responsibilities of staff shift to carry out different functions. Problems can occur when the message of change is unclear, when job assignments and responsibilities overlap, when families express reluctance to give up preferred staff, or when providers resist changes in current operating procedures.

Independent service coordination and brokerage is a key component of self- determination. Project coordinators identify the challenge of changing current program structures to carry out new functions, and of moving existing staff to assume new roles. One person described the difficulty of moving forward this way, We believed, and still believe, the people who facilitate person-centered plans and budgets need to be independent of financial, organizational and historical affiliations with the people they are supporting. Providers and our support coordinators have disagreed. Another person notes that [under the self-determination project]...a certain amount of resources are removed from the Area's control, and the service coordinators participating in the project must behave in ways that the supervisory staff may not understand or appreciate. The experience may become alienating for participating service coordinators and the environment has the potential for being a breeding ground far resentment.

Resolve Individual Budgeting and Finance Issues:

Several project coordinators wrote of the challenges involved with the development and large-scale implementation of individual budgets. One director stated, We have not found ways to really put money in the hands of the people we support. We still struggle with what it means, since it is virtually all Medicaid dollars. Another described the difficulty, trying to implement new ways of thinking and doing under a fee for service system. Others responded that the individual budgeting process and outcome turned out to be overwhelming for some people receiving services, and that the project needed to figure out more effective ways to support people through the process. She described the situation this way, I suspect we over-estimated the appeal of actually controlling dollars. For the most part, people seem to just want more individualized stuff. They want their needs met in ways that enhance their lives. In order for them to do that they must control money, understand the rules and regulations, negotiate budgets, all the pieces that go along with S-D. For some people it seems fairly overwhelming. We need further development of the broker/mentor role to take on some of the 'grunt work;' someone who understands how to effectively access the things that people really want and need.

Pay Attention to the Pace of Change:

A theme in the responses of many project directors relates to the pace of change. Everything takes longer than we expect. Its hard work and it takes time. For some it was too fast, particularly given their other duties and responsibilities. For other individuals, however, the process was moving too slow, and they felt the need for more pressure or urgency to move things forward and implement the changes that were being discussed. Others state that they feel implementation was hampered by unrealistic expectations regarding the changes that could actually be accomplished during the time frame. One coordinator wrote, moving with fewer people in the project may have given us more time and energy to systematically move the system change forward more effectively.

Additional Issues:

Project directors identified several other issues that seemed to get in the way of the ability of their program to move forward, including:

The lack of direct support for project staff who were implementing the changes,
Taking too long to respond to questions from stakeholders,
The difficulty of learning how to develop support and interest from providers,
Changing the titles of staff members without changing their roles responsibilities.

SUMMARY

Several themes are reflected in the responses of self-determination project directors who responded to a short e-mail survey. The following strategies are seen as having a positive impact on the change process:

Using an effective methodology to achieve system change from the beginning,
Bringing consumers,,families and providers together in coalitions to advise, plan, train and educate,
Providing training to everyone involved in the change process,
Employing effective communication strategies to get the message across,
Including self-determination principles in legislation, regulation, policy planning and system redesign activities and,
Using an effective financial strategy.

Project coordinators describe a change process that moves forward in a purposeful manner, yet is flexible in order to meet the needs of individual situations. Some strategies are more effective than others at bringing about desired outcomes, and it was frequently difficult for respondents to identify particular activities or tactics that did not work because they do not see the situation in those terms. Accordingly, the following "needs" were identified as key lessons learned:

Involve stakeholders from the beginning,
Develop effective communication strategies,
Address the need to manage dual systems
Clearly define new roles and responsibilities,
Resolve individual budgeting and finance issues and,
Pay attention to the pace of change.

The author appreciates the time and effort project coordinators spent completing the survey and the many follow-up discussions that took place.

This paper available from Charles Moseley, EdD, Director, University of NH, Institute on Disability, National Program Office on Self-Determination, 7 Leavitt Lane, Suite 101, Durham, NH 03824-3522, Tel: 603-862-4810, Fax: 603-862-0615, E-mail: chas.moseley@unh.edu

System Change and Self-Directed Services: Lessons Learned

Roger Deshaies
New Mexico Department of Health
January 22, 2001

These comments and observations may be familiar to you. Your own experiences with organizational development and management of a social services system may have resulted in similar conclusions. The following thoughts and points stem from several forays into system change and some of the lessons I learned, some the hard way. The system change efforts include the closure of a state operated institution for people with mental retardation in Maine (Pineland Center), the closure of a state operated institution in Arizona (the Arizona Training Center in Tucson) and the introduction of consumer self-directed model also in Arizona.

A Vision Statement is important but a Shared Vision is required.

The decision to close Pineland Center was made at a management meeting, proudly announced the day after and then severely criticized for the better part of 18 months. The decision to close the Center was criticized even by organizations and individuals supportive of developing a community-based system. The reason for much of the criticism was that the vision, proudly shared, was developed in isolation from people with disabilities, their families, service providers and others with an interest in the outcome.

The simple lesson is that people impacted by decisions need to be part of the decision making process. They need to develop a sense of ownership with the direction being undertaken.

There will always be individuals and/or groups that will not "sign-on", however while they tend to be loud, they are often few in numbers. Having a shared vision provides a great counter to the boisterous few by demonstrating the community support for the direction of change in the system of support.

The importance of communication cannot be overstated but it is the significance of conversations that really contributes to success.

The rules of effective communication apply, of course, especially the mandate for continuous communications. The importance of clarity, honesty and communicating using multiple media must be part of any strategy.

You can acquire numerous books on communication and effective strategies. A simple lesion, however, is that visibility fosters credibility. While those strategies work and are important, simple conversations with individuals and groups can have a greater impact. But they must be conversations where you are prepared to listen and answer questions both that are asked and implied. What is an implied question? The one often that lurks beneath the apprehension of change is "how will this change affect me?" There is a reluctance to ask such a personal question but it is an issue that significantly impacts on the willingness of people to participant in true system change and redesign.

You need to understand how the change that is being planned impacts on individuals within the organization, their roles, responsibilities and future. What does self-directed services mean to my job if I now currently approve and make those decisions? Will have a job? If I will have a job, what will I do? What are the requirements for the emerging duties that I will have? Will I qualify and can I succeed? Often these questions are not asked but they exist in the minds of many within the organization, even with the managers who are planning the redesign.

There is honesty and then there is honesty!

Within the systems that I have worked, it was not uncommon to hear someone say, "they just did not ask me the right question." Usually some statement was associated with a legislative hearing or an interview with a reporter. This lack of communicating candidly will create a problem in implementing system reform. The motivation for partial statements at times is in deference to hurt feelings, morale, and premature disclosures or to avoid confrontations. Sometimes the reason is that you simply do not know the answer and you try to "dance" through the issue with vague comments. Statements are therefore put through such a spin control that technically you are telling the truth but the omissions or generalities often make the message incomplete at best or at worst disingenuous.

There is a fine line to walk in system change efforts. Research has supported the importance that people place on the belief that management knows what it is doing during a redesign effort. This obligation can sometimes hamper a change effort if key decision-makers internalize a belief that they must have answers to all questions before any action can be taken. Welcome to "analysis paralysis," one of the challenges that must be overcome.

The simple lesson learned is that it is ok to acknowledge that you do not know the answer yet it is never ok to be dishonest. The truth of system change is that we often learn together and openness often leads to trust which is essential to effective leadership. My experience has taught me the following:

You will never have all the details or specifics;
Most of what is learned is learned by doing;
No matter how well planned, change is often messy and somewhat chaotic
No matter how well you plan, something will be missed or will not unfold as planned.

To acknowledge that you are uncertain or do not know an answer does not mean that you are indifferent to the issues or the concerns. That is why it is important to do your homework and be able to articulate clear values and beliefs supported with data and research.

It is important to acknowledge that it some ways the work is "still in progress" and to use the "conversations" you had to demonstrate changes made in the planning and implementation process. It is especially important to demonstrate an understanding of so unintended consequences" and how the implementation will be monitored to avoid such actions. One effective strategy to address concerns regarding unintended consequences is to hold participants harmless. You agree upon a certain threshold, whether its financial or other standards for a time-limited basis. This often removes the uncertainty as a barrier to moving forward.

Making the case for change and instituting a sense of urgency.

Why are you doing this? What is the motivation for change? Do you have a mandate for changing the organization? Why now and why can't we wait?

You must be able to translate the philosophy that governs the values and principles into specific plans on implementation and answers to the questions in the above paragraph.

John Kofter from the Harvard Business School identified in one of his works that the number one reason that organizations fail in the effort at change is internal complacency. One of the tools of internal complacency is the "analysis paralysis" mentioned, where the perceived absence of data leads to filibusters that prevent the organization from moving forward. One of the manifestations of this is the need to revisit past decisions and re-ask questions already addressed.

From my experience the likelihood for this organizational complacency is directly tied to the following:

There is the lack of a crisis situation or other equally problematic event(s);
There is a lack of demanding performance standards with the concomitant lack of accountability for low performance;
There is a lack of demands for change from external stakeholders.

Fundamental Issues, from philosophy to practice:

My experience has led me to conclude that you can divide people into one of three groups whenever you are talking about system change. The first group includes people who have been waiting for you to catch up with them. They have been waiting for the changes and may be a little disappointed that you are not moving as fast as they may want.

The second group includes people who have made up their minds that under no circumstance can they agree with or support what you want to do. Ironically, we spend a considerable of time trying to convert them to "our way of thinking", often at the expense of the third group.

The third group includes people who have not made up their minds. They may find the change desirable yet are apprehensive. This group requires you to convert the philosophy that generated the vision statement, the guiding principles and the mission into concrete and detail-oriented plans.

A simple lesson learned along the way was to spend far less time with dinosaurs and more time with the people wanting and needing assistance in translating a philosophical shift into day-to-day practices.

What are some examples?

Consumer-directed supports require organizational reconfiguration, additional system supports and the elimination of some practices. The core question is whether the organization is ready to make such changes. Some issues to consider:

Just what does 'consumer-directed services' mean in New Mexico; what are the parameters both in terms of services that will be 'directed' and the fiscal limits that will be allowed;
Do you have the infrastructure to support the definition adopted, specifically for participant budgets rather than traditional contracts for services;
Does the organization really have the will to make changes, especially regarding control of fiscal resources;
What is the plan regarding transitioning from program/slot driven" capacity to participant-control;
What if the person with developmental disabilities or their family prefer the existing model of support;
What role will substitute decision-making have and how will this process be monitored;
Can the infrastructure support a shift from a supply centered to a demand centered system
What is the role of fiscal intermediaries, who will provide that function and who will monitor;
How will Medicaid funds be incorporated into a participant budget;

Risk Management. Quality of Care and Quality of Life

Quality Assurance is a central component of any system. Movement towards a self-determination model and consumer-directed support system raises numerous questions specific to what components should make up such a system.

A simple lesson learned is that one of the most fervent challenges is the one that focuses on concerns and allegations that the changes envisioned will come at the expense of people with developmental disabilities' welfare. A common concern is that an institution (e.g., an ICF/MR or a Group Home) provides a level of safety, surveillance and monitoring lacking within supportive living or other alternates. You need to prepare for a response.

Quality of Care and Quality of Life can be seen as opposite points on a continuum of support. Quality of Care centers on health, safety, accidents and other indicators that aid in defining one's overall welfare. Quality of Life centers on friendships, relationships and other indicators that are valued by the person such as freedom to come and go. There is a tension between these points as often rules and regulations that are focused on ensuring Quality of Care set standards and requirements that may comprise one's Quality of Life. Organizations along with all the stakeholders must decide the balance between these points, what are acceptable risks when public funds are used to support an individual.

Jim Conroy's work especially on "valued outcomes" may be worth your time, if you are not familiar.

What are you buying, from capacity to outcomes:

Most contracts for support services center on capacity with requirements for general compliance with an agency's rules, fiscal reporting and similar standards. This approach will not suffice for consumer-directed supports. When resources are placed under the control of people with developmental disabilities and they in turn can choose the intensity and frequency of supports, different system requirements are needed:

The ability to establish an individual rate for each person in need of support;
The ability to ensure that each person has knowledge or access to information needed to make informed decisions;
The ability to design and implement a system of accountability for the use of public funds.

Courage to slay dragons:

Robert Kriegel and David Brandt wrote an excellent book titled Sacred Cows Make The Best Burgers. The essence of their work is that all organizations have procedures and practices that are viewed as untouchable but no longer have any functional purpose within the organization and in fact may be counter to the new direction. Yet they remain often as barriers to the change you wish to implement.

A challenge you face is to actually rid the organization of these barriers. This is easier said than done often because many of the procedures tend to be tied to the image of the organization. Without a change, however, your new procedures may not have a chance, in particular regarding the new policies and procedures that are required for the successful implementation of a self-directed system.

From Leader-driven change to the "Invisible Person".

Everything starts someplace and significant reform such as transitioning to a consumer-driven system requires a champion, someone who will be the point in the initial change effort. The person will explain the reasons for such a transition effort and offer the benefits and the anticipated outcomes; the person will explain the urgency and why this change must happen sooner rather than later; the person will explain the guiding principles and answer the initial questions. Then and most importantly, the leader of the effort must begin transitioning the "ownership" to a broad-based stakeholder group. The ownership must become system-wide. This does not mean that the leader abdicates his/her responsibilities as the "change agent," rather the leader shifts from the foreground to the background. I have described this as an architect who after designing the structure of a house gives the plans to a master builder. The master builder task is to translate the vision of the architect to the reality. Each knows that the original plan may require changes along the way.

Conclusion:

The introduction of a consumer-directed system is not a program and it is not a project. It is a commitment to change how your organization constructs, delivers and monitors supports to people with developmental disabilities. Your challenges are not unique to New Mexico yet the structure of the solutions must be tailored to the cultural values of the organizations and communities that comprise you state.

The purpose of this document is to share some thoughts of lessons learned along the way. I have found some guiding principles helpful:

We tend to believe that what we established will last forever. Institutions were the answer in the early 1900s and when they were viewed as inadequate, the ICF/MR program flourished. Then came the group homes as the new answer to the cost and inadequacies of the ICF/MR program and now we discuss supported living as the preferred option to group homes. The reality is that services and thinking evolve and change. I have learned that experience changes expectations and organizations must adapt to be successful.
There needs to be a strong mandate for change. If it currently does not exist, you need to create it. This is especially true if there is no crisis looming.
Be prudent and smart in selecting the first installment of the any change. Pilots are good if they are well constructed.
You need to build a powerful case for change. Why are you doing this is one of the most frequently asked questions. Your values and philosophy are good foundations for an answer but not completely adequate.
Let the stakeholders in particular the consumers drive the change.
Communicate continuously and engage in true conversations as often as possible.
Reshape your policies and procedures and resist the seductive notion to incorporate consumer directed as another program and option for people with developmental disabilities.
Encourage, support and advocate for open dialogue with all involved.
One of the barriers to change is the reality that new skills may be required on the part of staff. Encourage skill building and acknowledge the level of support that will be offered to ensure success.
Kill old processes that contradict your direction.

This paper available from Roger Deshaies, Consultant, William M. Mercer, Inc., 3131 East Camelback Road, #300, Phoenix, AZ 85016, Tel: 602-522-6549, Fax: 602-957-9573, E-mail: roger.deshaies@us.wmmercer.com

The Robert Wood Johnson Foundation Self-Determination Initiative: Year One Impact Assessment Report

John Agosta

(INTRO ONLY)

Why There's Really No Place Like Home: New Ways of Caring for the Severely Disabled

Joseph P. Shapiro
Reprinted from U.S. NEWS & WORLD REPORT, April 23, 2001, Pages 26-27

(INTRO ONLY)

It felt "almost like somebody died." Carleen Ashley remembers the day her twin sister, Cathy, was sent to live far away. Shortly after the twins' seventh birthday, on a sunny spring day in 1965, Cathy's mother carried the severely disabled girl, in a red-and-white party dress, to the family station wagon. Their mom cradled Cathy in her lap while their dad drove, in near silence, more than 100 miles to a New Hampshire hospital for children with mental retardation.

This publication can be purchased from U.S. News, Speciality Marketing, 450 West 33rd Street, New York, NY 10001, Tel: 800-836-6397, Fax: 602-870-4760, E-mail onlinecatalog@usnews.com, Web site: http://www.usnews.com/usnews/home.htm

Wyoming DOORS: Setting IRAs for HCB Waiver

Gary Smith, Director of Special Projects
National Association of State Directors of Developmental Disabilities Services, Inc., 113 Oronoco Street, Alexandria, VA 22314
February 5, 1999

The NASDDDS Special Studies Initiative...

In November 1998, the NASDDDS Board of Directors launched the Association's Special Studies Initiative. The Initiative's aim is to furnish in-depth information to the Association's member agencies concerning topics that they have identified as especially critical in improving publicly funded services and supports for people with developmental disabilities. Special studies focus areas are selected via membership survey.

Special Study Focus: Individual Resource Allocations

Many state developmental disabilities authorities (SDDAS) are keenly interested in employing Individual Resource Allocations (IRAs) to enable individuals and families to play a more direct role in managing the services and supports they receive. Various SDDA policy aims spark this interest, including:

Enabling individuals and families to assert a stronger role in selecting the services and supports they receive, deciding which agencies or individuals will furnish them, and actively managing their delivery. IRAs are a central feature of self-determination and consumer-directed supports strategies,
Promoting greater flexibility in deploying available dollars on behalf of the individual in order to encourage the best use of limited public dollars; and,
Making dollars "portable" (i.e., tying dollars to the individual rather than particular service agencies or program categories) and, thereby, avoiding the pitfalls associated with "program funding" or "slot-based contracting".

The Robert Wood Johnson Foundation Self-Determination projects that are underway around the nation have played a critical role in spurring SDDA interest in employing IRAs.

Prospectively allocating an overall budget to individuals and families is a substantial departure from conventional state developmental disabilities funding policies and practices. Such policies usually concern determining payment rates for specific services/providers and regulating expenditures by limiting "slots" by program or service category. These policies and practices are regularly criticized as undermining individual choice and creating serious obstacles to tailoring services and supports to individual needs, preferences and circumstances.

IRAs are a different matter altogether. Their use means decoupling dollars from specific service types or community service organizations in favor of setting an overall budget within which the individual or family has considerable discretion in making decisions concerning the services that will best meet their needs and the agencies/individuals who will furnish them. IRAs are a direct way of empowering and engaging individuals and families in deciding how public dollars are used so that the services and supports purchased are relevant and important to them. Since IRAs are tied to a specific individual or family rather than provider or service type, the dollars are portable. Portability is important in creating incentives for service agencies to furnish services and supports that are responsive to each person's preferences.

There are many compelling reasons for SDDAs to employ IRAs. But, the challenge SDDAs face is selecting a method for determining the dollar amount of each person's IRA. However this determination is made, it is important that the method yield fair and equitable results. That is, individuals and families in similar circumstances will have comparable allocations and the dollar amounts reasonably approximate the dollars needed to meet the person's needs. IRA determination methods also must recognize that support needs vary considerably among individuals and such needs are likely to change over time.

In some cases, states and/or localities determine the amount of a person's IRA based on the dollar value of the publicly funded services and supports the person presently is receiving. That is, the budget is what is presently spent on behalf of the individual and the individual may change how these dollars are used. Basing the IRA on current outlays is a pragmatic way for setting a budget mark. However, many SDDAs are seeking more generalized methods, especially with respect to determining IRAs for individuals and families who are new to the service system.

At this juncture, states are exploring various methods for determining IRAs. No single "best practice" has emerged. Since the development of such methods is in its formative stage, the Association's special study will include a series of policy and practice briefs that profile various methods on a case-by-case basis.

WYOMING DOORS: SETTING IRAS FOR HCB WAIVER SERVICES

Introduction

In July 1998, the Wyoming Division of Developmental Disabilities (DDD) implemented its DOORS methodology for determining individual resource allocations (IRAs) for individuals who participate in the state's Medicaid home and community-based (HCB) waiver program for adults with developmental disabilities. In January 1999, the Division extended the use of IRAs to participants in the state's HCB waiver program for children with developmental disabilities.

The DOORS IRAs were developed through statistical analyses of the interplay among consumer characteristics, current services and costs. The DOORS IRA is an individually determined total budget mark within which a person's local/individual planning team develops his or her service plan and HCB waiver services are authorized. There has been broad acceptance of DOORS among stakeholders, especially because IRAs are regarded as having been fairly and equitably determined.

This policy and practice brief describes the development and key features of Wyoming's DOORS IRA determination methodology and how IRAs are employed m Wyoming. It also offers various observations concerning the applicability of the methodology elsewhere.

Background: Wyoming's Developmental Disabilities Service System

Until 1990, Wyoming's community service system for people with developmental disabilities (especially adults) was limited in scope. Most state dollars were earmarked for services at the Wyoming State Training School (WSTS) in Lander, the state's only large public mental retardation facility. Only 200 individuals received state-reimbursed community residential services. Wyoming stood alone among the states in not using federal Medicaid dollars (either by way of the ICF/MR or HCB waiver programs) to underwrite the costs of specialized long-term services and supports for people with developmental disabilities.

As an outgrowth of a lawsuit filed in 1990, state officials agreed to: (a) arrange for community services on behalf of WSTS residents who had been determined to be inappropriately placed at the facility; (b) obtain ICF/MR certification of WSTS; and, (c) take a variety of steps to expand and enhance the quality and availability of community services and supports. In order to finance the expansion of Wyoming's community service system, DDD officials turned to the Medicaid home and community-based waiver program rather than sponsor the development of community ICFs/MR. In 1991, the federal Health Care Financing Administration ( HCFA) approved Wyoming's request to launch an HCB waiver program for adults with developmental disabilities. In 1992, HCFA approved a second HCB waiver program for children and youth (up to age 2l) with developmental disabilities. Since going into effect, both of these waiver programs have played an enormously important role in underwriting the community placement of children and adults from WSTS as well as the expansion of community services for other citizens with developmental disabilities.

Between 1990 and 1996, Wyoming's total systemwide expenditures for developmental disabilities services more than doubled, increasing from approximately $30.0 million to $65.5 million. Between 1988 and the present, the number of WSTS residents has dropped from 374 to 124. In 1998, 672 individuals participated in the adult HCB waiver program at an overall annual cost of $29.3 million; the children's waiver program served 363 children at a cost of $5.1 million. Relative to state population, Wyoming today supports more individuals through its developmental disabilities HCB waiver programs than the vast majority of other states. In 1996, Wyoming ranked fourth among the states in its "fiscal effort" in support of people with developmental disabilities. Since 1990, Wyoming state tax dollar support of community services and supports has nearly quadrupled.

Wyoming's developmental disabilities service system today is vastly different than in 1990. The rapid-paced expansion of Wyoming's community service system in a compressed period of time posed many challenges for state officials and community service organizations alike. Certainly, one of the greatest challenges is that Wyoming is among the most rural of the states.

Development of DOORS

DOORS is the fourth community services funding system that DDD officials have implemented since 1990. During the initial expansion of Wyoming's community service system, the Division managed payments for HCB waiver services by employing conventional rate schedules, overall cost caps, and ad hoc negotiation with provider agencies. However, these funding policies and practices had several unsatisfactory results. DDD officials found themselves engaged in micromanaging the service system from Cheyenne, including conducting close reviews of consumer service plans to ensure cost-effectiveness. This practice, however, was at odds with the central role of the local/individual planning team in developing individual support plans and strategies. Division officials also were concerned that disparities had arisen in payments to community service organizations and that HCB waiver per capita costs were rising too quickly.

These concerns prompted the development of DOORS. Division officials decided that the new funding system should be based on the following principles:

Each person's local/individual planning team should be the primary manager of the dollars available to pay for HCB waiver services and supports. The team should work out the best mix of services and supports to meet the needs of the individual. Only rarely should the Division become involved in decisions concerning the authorization of specific services or second guess team decisions;
The budget mark established for each person should be an overall amount of dollars. The mark should not depend on the exact services selected by the team (because the team should have free rein in working out the best mix of services); nor should it be influenced by which organization(s) currently served or would serve the person (because individuals and families should have free choice among providers). Dollars should be portable. The amount should not change if the person selected another provider. In other words, the mark would be an IRA;
The amount of the IRA would be determined in the same way for all individuals. The method would apply equally to people presently receiving services and individuals new to the system. State officials and stakeholders agreed that funding authorization levels must reflect differences in the needs of individuals and be determined in an evenhanded fashion;
The new system would operate within available funds. In other words, implementation of the new system would be budget neutral.

In short, funding would be reconfigured to firmly place authority and responsibility for managing dollars and services squarely in the hands of the local/individual planning team. Instead of the Division's exercising close oversight of plans to ensure that spending remained within available dollars, the local/individual planning team would have the flexibility to work out the best use of the available dollars. The challenge that confronted DDD officials was how to determine each individual's IRA.

Designing DOORS

Division officials developed the DOORS methodology by conducting in-depth statistical analyses of the current costs of serving the individuals who participate in each HCB waiver program. The aim of this statistical analysis was to develop funding "models" that essentially would reduce or eliminate funding disparities among individuals that had arisen over the years. Statistical methods were used to "normalize" funding levels in each HCB waiver program.

The logic behind the development of DOORS is straightforward, although the underlying statistical methods are complex. Wyoming officials reasoned that the current distribution of resources among HCB waiver participants reflected rational decisions that had taken into account the needs of each individual. While decisionmaking had been carried out more or less consistently over the years, variance had crept into resource allocations. In other words, similarly situated individuals had different resource allocations. If IRAs were to be determined in an evenhanded fashion, this variance would need to be reduced or removed. The process that Wyoming officials followed was to identify factors that, from a policy perspective, should be the principal determinants of resource allocations and recalibrate individual authorizations against such factors. This recalibration process would reduce or eliminate the variances that arose due to other factors. The factors that state officials selected to serve as the basis of the DOORS IRAs were the following:

The HCB waiver services previously authorized for each person. Reflecting such services in the model affirmed that service plans had been developed to address legitimate needs of program participants;
Individual consumer characteristics as measured by the Inventory for Client and Agency Planning (ICAP) instrument. Here the aim was to take into account the characteristics that, on a face validity basis, would affect the intensity of supports that an individual is likely to require;
Economic factors that might affect the costs of serving an individual in one town versus another; and,
Provider agency characteristics that, from an efficiency standpoint, have a bearing on costs.

The goal was to develop a model that would generate IRAs based on the foregoing factors so that the amounts determined would yield the same allocation for similarly situated individuals. To the extent that individuals received different allocations, the difference would stem from the foregoing factors but no others.

It is just as important to point out that various factors were not included in the model. In particular

While the HCB waiver services that a person currently receives are included, their exact location, type and intensity are not. The model does not take into account the size of a person's living arrangement or whether a person may be receiving facility-based or "integrated" day services. The model solely reflects that a person is receiving residential supports, day supports or other types of services. To include the particulars of a person's current services would have worked at cross-purposes with an important principle: it is up to the local/individual planning team to decide on the specific mix of services and supports and how they will be furnished.
Other than provider efficiency measures, the model contains no adjustment for the individual's being served by one provider or another. The model does not calibrate the IRA amount to previous provider-by-provider payments. Not tying the IRA to specific providers and their costs reflects the principle that individuals have free choice of provider. In addition, it is important to keep in mind that DOORS is a system for determining IRAs; it is not a provider agency rate setting tool.

Not including the preceding factors means that they are not allowed to affect the amount of a person's IRA.

The derivation of the DOORS adult and children's models proceeded by applying multiple regression methods to reduce the variance in resource allocations with respect to the factors included in the model. Taking into account the factors that Division officials identified for the model, it was determined that, in the case of adult HCB waiver participants, the factors explained 51 percent of the variance in current resource allocation levels. In other words, there was a significant "residual" or "unexplained" variance in resource allocations that arose from factors other than the ones selected by state officials. Multiple regression methods was used to reduce this residual variance.

The development of the adult model went through nine iterations before it was finalized. In the first iteration, 40 variables were included. Where a consumer characteristic was included but its correlation with costs ran in an unexpected direction (i.e., "face validity" was violated), the variable was thrown out. Other variables also were tossed out to the extent that they did not contribute to reducing the amount of unexplained variance. The statistical methods employed permitted keeping a large number of variables in play all at once in order to continuously weigh the effects of including or excluding one or several variables and pinpoint the variables that would contribute most to the explanation of variance. The final adult models contains 23 variables, including 16 items from the ICAP. The statistical methods employed generate weighting values for each of these variables. In the end, the amount of unexplained variance in resource allocations for the adult waiver was reduced from 49 to 11 percent.

In the case of both the adult and children's DOORS models, the formulas that were developed describe the best statistical "fit" between existing resource allocations and the factors that DDD officials elected to include in the model. In other words, the models statistically describe the resource allocations that would result if all the various factors were taken into account in a consistent fashion for all individuals served. The effect on resource allocations of other factors that were excluded from the models was reduced or eliminated.

Neither of the DOORS models describes the "causes" of differences in the costs of supporting individuals. State officials are quick to point out that "correlation does not imply causality". Explanation of variance methods can be applied to normalize nearly any set of data against any of a wide variety of factors. The statistical analysis that underlies the DOORS models normalized funding on a person-by-person basis against the factors that state officials believed should serve as a legitimate basis for individual resource allocations.

Similarly, the ICAP factors incorporated into each model are not portrayed as "true" determinants of costs. In other words, Wyoming, officials do not argue that they have unearthed the Rosetta Stone that reveals the exact "universal" consumer characteristics that are the root causes behind the costs of serving one individual being higher or lower than another. The factors that are included in each model are those that state officials would expect on a face validity basis to affect costs and which have been determined to contribute the most to reducing the level of unexplained variance in Wyoming's allocations.

It also is important to point out that the ICAP factors included in each model nearly entirely consist of ICAP sub-elements. The aggregate ICAP "service score" is employed in the adult (but not the children's) model as one among a total of sixteen factors. DOORS does not directly translate the ICAP service score into a allocation amount. DOORS does not establish ICAP-based "levels of care" payments. The DOORS IRA amount is uniquely determined for each person, taking into account the factors included in each model. In both the adult and children's models there are non-ICAP factors in each formula. There are differences in the ICAP factors that are included in the children's and adult models, as one intuitively would expect. The children's model includes seven ICAP factors versus the sixteen in the adult model. The adult model includes economic and provider efficiency measures; the children's model does not.

In summary, the DOORS models are based on statistical analysis that normalizes resource allocations by taking into account services that have been determined as needed during service planning, various consumer characteristics and (in the case of the adult model) economic and provider measures to generate resource allocations on a formula basis. The formula ensures such resource allocations will be determined uniformly. The statistical methods aided in sorting out the various factors and assigning proper weights to them.

Operational Features of DOORS

DOORS-generated IRAs are produced in advance of the individual's planning meeting. When the planning team meets, it has the IRA amount in hand. The team's task is to produce a service plan/support strategy within this dollar amount making use of the broad service categories covered in Wyoming's HCB waiver program and other resources/supports that are available. The DOORS method does not dictate the exact services and supports that the team must select. Nor does DOORS include a rate setting methodology for specific providers or service types (see below). The team has an overall amount in hand, works within that amount in selecting services and supports as well as the community organization(s) that will supply them.

The DOORS IRAs are not inflexible "hard" budget limits. DDD has hold back a modest amount of reserve funds to address the needs of individuals when for some reason the IRA amount is not adequate. This reflects a clear understanding that the DOORS IRAs are statistically-based predictions or estimates of resource requirements and, consequently, subject to error. State officials recognize that legitimate problems can crop up in meeting the needs of some individuals within the amount allocated. In addition, DDD officials recognized that the DOORS methodology would not yield reliable IRAs for "outlier" cases. Such cases involve individuals who have very unique service needs that fall outside standard service models and support strategies. The cost of supporting such individuals inherently is difficult to predict and, therefore, cannot be readily described in a "model". In the case of "outliers", funding amounts are determined through "hand work".

As mentioned earlier, DOORS does not include a provider/service rate setting component. Instead, the specific rates paid to providers for billed services are worked out locally between the planning team and the provider (agency or individual). To guard against individuals being charged excessive rates, DDD has established "payment/rate screens".

A concern that arises concerning payment methods that factor in ICAP or similar consumer assessment data is that the assessments will be "gained" in order to generate higher dollar amounts (e.g., the person will be assessed as having more challenges in order to increase funding). In Wyoming, ICAPs are administered independently by state DDD field staff (ten staff members perform this function, although this is not their only responsibility). This is one way to avoid gaming. In addition, the exact ICAP factors that DOORS uses to generate IRAs have been masked. It also is worth pointing out that the factors actually included in each model are among the more concrete sub-elements of the ICAP instrument and thus the most readily verifiable.

The implementation of DOORS is still unfolding. Both the adult and children's models are being phased in as HCB waiver service plans come due for review by local/individual planning teams. Nonetheless, thus far, the results have been encouraging. The volume of cases where decisions are being made in Cheyenne has been reduced dramatically. So far, there have been no appeals of the IRA budget amounts or state decisions regarding requests to change those amounts.

DDD officials also report that DOORS appears to enjoy broad stakeholder acceptance. The system is perceived to be fair and equitable. It informs individuals and families of the amount available in clear terms. It has reduced the suspicion that individuals and families have been treated differently or that some providers have secured more favorable payments than others have. In addition, since DDD officials were able to fully simulate the results of applying the DOORS methodology prior to its implementation, they could identify in advance possible instances where community service organizations might face a significant overall decline in payments once DOORS took effect. They alerted these organizations to this potential problem so that they could begin make necessary operational changes. Wyoming officials decided not to use "circuit breakers" to mitigate the effects of payment changes on provider agencies as a result of the implementation of DOORS.

Wyoming's implementation of the DOORS and the adoption of IRAs is not tied to a formal self-determination initiative. Wyoming does not have an RWJ foundation grant. However, in operation, the IRAs are grounded in the fundamental principles of self-determination and consumer direction.

At this stage, it is still too early to tell what effect Wyoming's use of IRAs is having on per capita costs: namely, whether the flexibility afforded the planning team byway of providing each person an individual budget mark is leading to a reduction in per capita costs overall. The implementation of DOORS is being phased in as individual plans come due for review. Time will tell whether there is a difference in the amount allocated versus the amount actually used. The implementation of DOORS is not tied to a spending reduction plan. However, lower per capita costs would be a welcome result since, for the first time in several years, Wyoming is beginning to experience a waiting list for services and the service system faces flat funding.

It also is too early to tell the extent to which the changeover to IRAs is leading to significant modifications in services and/or the providers that individuals and families are selecting. It has been a long-standing policy in Wyoming that individuals can exercise free choice of provider. DDD officials observe that families with a son or daughter who participates in the children's waiver are more prone to play a proactive role in managing the service plan than many of the families and individuals who receive services via the adult waiver program. This difference may be attributable to the fact that families with children have been involved in early intervention and special education programs. For many individuals served in the adult waiver, the IRA framework is new and both the individuals and their families are feeling their way in this new environment.

Observations

Wyoming's systemwide implementation of DOORS is an important milestone in the use of IRAs in state developmental disabilities service systems. The principles upon which DOORS is based affirm the central role of individuals and families being the primary decision-makers in developing support strategies and making other key decisions. The DOORS IRAs inform individuals and families of the total resources available to them. They place individuals and families in a position of responsibility and authority in crafting support strategies within the funds available.

It is worth pointing out that Wyoming was especially well positioned to make this change. The overall funding available in Wyoming compares favorably to other states. The expansion of the community service system occurred nearly entirely through the HCB waiver program. One outgrowth of this is that the financing of Wyoming's system is more unified than is typical in many other states. Where multiple funding streams are present, they tend to breed disparate payment amounts and hence result in wider variance in per capita costs. When Wyoming's system was in its build out phase, state officials used relatively consistent decision-making rules concerning funding. In combination, these factors eased the implementation of DOORS because state officials did not face the prospect that normalizing the dollars available would result in massive reallocation of resources among consumers.

With respect to the DOORS models themselves and the methodology used in their development, it is important to emphasize their basis in policy. The aim in Wyoming was to normalize resource allocations against factors that had been selected by state officials. The factors that were selected were based on state officials' judgments concerning which among many possible factors should play a role in determining resource allocations. Therefore, the models are policy-based. The models are especially attractive because the factors included have considerable face validity.

The DOORS models are not cost models in the sense that they establish a hard and fast relationship between the factors contained in each model and the costs of supporting a particular individual. Again, correlation does not imply causality. Instead, the DOORS models are "best fit" models. Wyoming officials do not represent that the amounts generated by either model as predictors of the cost of serving an individual anywhere else than in Wyoming. The models are not represented as generating funding amounts that are "adequate" or "appropriate". The amounts calculated are consistent with Wyoming's funding levels and service practices. The fact that Wyoming's overall system funding level has supported the delivery of high quality community services lends confidence that the amounts the models generate is appropriate. Where current funding levels are regarded as especially problematic, there would be vastly less confidence in the amounts generated by the application of a DOORS-like methodology.

It also is important to point out that Wyoming officials were able to construct the DOORS models because the state possessed a comprehensive data base on consumer characteristics (the ICAP has been administered in Wyoming for many years) as well as information concerning current dollar allocations and service use patterns on a person-by-person basis. All this information is computerized and can be analyzed employing PC-based statistical software. To the extent that other states are interested in building models along the same lines as Wyoming, similar information must be available. The methodology is not ICAP-dependent. ICAP data happened to be what Wyoming had in hand to provide a reasonably complete picture of consumer characteristics. The ICAP instrument has known levels of reliability and validity. However, other instruments or sources of information concerning consumer characteristics can provide the necessary data as well.

Lastly, it is worth pointing out that the statistical methods and analysis used in developing DOORS have other possible applications independent of establishing IRAs. For example, the methods may be employed to determine where a state stands with respect to the factors that state officials believe ought to be determinant of resource allocations. The methodology permits measuring the extent to which present allocations deviate from such factors and the effects of reducing such deviations. This type of analysis can be invaluable in evaluating current resource allocations.

For More Information:

Jon Fortune, Adult Services Manager, Division of Developmental Disabilities, WY Department of Health, Herschler Building -- 1st Floor West, 122 W. 25th Street, Cheyenne, WY 82002, Tel: 307-777-6488,E-mail: jfortu@misse.state.wy.us

Jon is happy to share extensive information concerning DOORS and talk with officials in other states interested in conducting a similar analysis.

This paper is available for Jon Fortune, Adult Services Manager, Division of Developmental Disabilities, WY Department of Health, Herschler Building, First Floor West, 122 W. 25th Street, Cheyenne, WY 82002, Tel: 307-777-6488, E-mail: jfortu@misse.state.wy.us, Web site: http://ddd.state.wy.us

Topics

Disability

Populations

People with Disabilities | Older Adults

INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities

WELCOME

SPONSORS

AGENDA

LIST OF PARTICIPANTS

BIOGRAPHIES

WASHINGTON AREA INFORMATION

Restaurant Guide

Washington, DC Welcomes Physically Challenged Travelers

PRESENTATIONS

Cash and Counseling: Consumers' Early Experience In Arkansas and New Jersey

Consumer-Directed Fiscal and Supportive Intermediary Services: An Overview

Consumer/Survivor Research: A Decade of Learning

Demonstrating Self-Determination: An Evaluation of Policy and Implementation Issues

Elder Preferences for Consumer Directed Community Care: Implications for Policy and Management

Independent Choices: Oregon

IndependentChoices: An Experiment in Consumer-Direction

New Jersey's Experiences

Preferences For Consumer-Directed Services Among Different Consumer Groups: Cash and Counseling Demonstration and Evaluation Early Findings

Self Determination

Self-Determination: The State of the Art in Supporting People with Development Disabilities in the U.S.

HANDOUTS

A Descriptive Analysis of Patterns of Informal and Formal Caregiving among Privately Insured and Non-Privately Insured Disabled Elders Living in the Community

A Right to Personal Assistance Services: "Most Integrated Setting Appropriate" Requirements and the Independent Living Model of Long-Term Care

Attitudes Toward Government Policies That Assist Informal Caregivers: The Link Between Personal Troubles and Public Issues

Autonomy or Abandonment: Changing Perspectives on Delegation

Cash and Counseling: Consumer's Early Experiences in Arkansas

Cash and Counseling: Early Experiences in Arkansas

Consumer-Directed Models of Personal Care: Lessons from Medicaid

Consumer-Directed Personal Assistance Services: Key Operational Issues for State CD-PAS Programs Using Intermediary Service Organizations

Coordinated Invitation to Apply for "Systems Change Grants for Community Living": Improving Community Services for Children and Adults of Any Age Who Have a Disability or Long Term Illness

GENERATIONS--Consumer Direction in Long-Term Care

Introduction

A Consumer-Directed Homecare Program that Works for the Cognitively Impaired

A Review of State Initiatives in Consumer-Directed Long-Term Care

Comparing Consumer- and Agency-Directed Models: California's In-Home Supportive Services Program

Consumer Direction in Long-Term Care: A Taxonomy of Legal Issues

Consumer-Directed Home- and Community-Based Services Program in Five Countries: Policy Issues for Older People and Government

Consumer-Directed Long-Term-Care Services: Evolving Perspectives and Alliances

Culturally Appropriate Consumer-Directed Care: The American Indian Choices Project

Early Lessons from the Cash and Counseling Demonstration and Evaluation

Fiscal Intermediaries: Reducing the Burden of Consumer-Directed Support

Implementation Issues for Consumer-Directed Programs: A Survey of Policy Experts

People First: The Consumers in Consumer Direction

Promoting Consumer Direction for Family Caregiver Support: An Agency-Driven Model

Rapid Response: Development of a Homecare Worker Replacement Service

The Federal Role in the Move Toward Consumer Direction

The Quality of Consumer-Directed Long-Term Care

Toward a Stable and Experienced Caregiving Workforce

Going Home

My daughter thinks I ought to live in a nursing home.

But I don't want to be a burden.

How much does it cost?

Who are you?

Who can I ask about this?

But my home is gone. I have nothing now.

What if...

What if...

But my family still says I'd be safer in the nursing home.

I use a wheelchair now, and my house isn't set up for that.

But what am I going to live on?

I don't like everybody knowing my business.

What if I make a plan with you and then decide I want something different?

ANSWERS FOR FAMILIES

IMPACT--Feature Issue on Support Coordination and Self-Determination for Persons with Developmental Disabilities

ARTICLES:

From the Editor

A System in Transition: Dane County Moves From Case Managers to Support Brokers

By Freedom Buoyed: Systems Change in Vermont

Consumer Empowerment Through Choice: Indiana's Privatized Case Management

I'm Not a Case and I Don't Want to Be Managed!"--Supporting Self-Determination

From Management to Support: No More "Business as Usual"

Plotting a Course to Better Service: Self-Determination in Nebraska

Resources for Further Information

Self-Determination Changes Everything

Support Brokers Are in Our Future

Support Coordination in Florida: An Evolving Story

There's No Place Like Home: Supporting People in Communities in Kansas

Thinking About Support Broker Roles

Training Future Case Managers: Moving to a Support Approach

Mrs. Lillie Brannon
North Little Rock, Arkansas

The Stoufer Family
Fort Smith, Arkansas

Mr. Scott Ross
Little Rock, Arkansas

Mrs. Janice Maddox
Pine Bluff, Arkansas