INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. 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:
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:
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
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:
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:
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:
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:
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: (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:
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:
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:
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:
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:
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 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: (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:
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:, Web site:
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:
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: or
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
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:, Web site:
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:
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:
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:
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: (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:, Web site:
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:
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:
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:
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:
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: (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: (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:
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:
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:, Web site:
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:
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:
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: (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:
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: (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:
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:
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 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:
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:
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:
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:
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:
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 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:
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:
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:
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:
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 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 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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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 ( 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:
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:
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 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:
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:
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:
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:
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: (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:
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:
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:
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:, Web site:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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 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:
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: (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:
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 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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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 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:
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:
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.