Below are a list of handouts provided at the National Symposium. Found will be the abstract, introduction, executive summary and/or full report (and a link to another site) depending on the Internet availability or release approval. At the end of each "handout" is information about where a hard copy can be obtained.
LifePlans, Inc., and The Center for Health and
Long-Term Care Research
April 1999
This research was designed to answer current questions surrounding long-term care insurance. It was also designed to provide basic sociodemographic and service utilization profiles for disabled private long-term care insurance policyholders, and to compare such data and findings to the experiences of non-insured disabled community-dwelling elders. Finally, the authors set out to discuss the implications of such findings on the service delivery system as well as on the design of private and public long-term care programs and policies. This was done by interviewing about 700 community-dwelling long-term care insurance claimants receiving benefits under their policies. Also interviewed were their informal caregivers.
| The Executive Summary and Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Andrew I. Batavia
Reprinted from AMERICAN JOURNAL
OF LAW & MEDICINE, Volume 27, Number 1, (2000): pp. 17-43
© 2000 by
American Society of Law, Medicine & Ethics and the Boston University School
of Law. All rights reserved.
The United States is currently entering a period in which the demand for long-term care services is growing at a particularly rapid rate; it is projected that the inflation-adjusted expenditures for long-term care will double between 1993 and 2018. As the population continues to age and become more chronically ill and disabled, the need to expand our long-term care capacity, and the long-term care options available, has become self evident. The question is; HOW WE CAN MEET THIS NEED IN A COST-EFFECTIVE MANNER THAT IS SATISFACTORY TO THE CONSUMER OF SERVICES.
The population of people who need long-term care consists of people who, by virtue of their disabilities (i.e., functional limitations), require significant assistance in basic life activities. Kaye and associates estimate that about 16% of people over age 65 require assistance with their activities of daily living ("ADL"), such as bathing, dressing, and feeding oneself, and/or the instrumental activities of daily living ("IADL"), including household chores, handling money, and shopping. Among the working-age population (ages 18-64), the personal assistance rate rose by 35% during the 1980s to 2.7 percent in 1993. Because both the working-age and elderly disabled populations are growing rapidly, the number of people who require such services is increasing dramatically.
Most people who require long-term care services live in families with very limited income, and receive their personal care under the "informal support model," in which uncompensated services are provided by family members and friends. One study estimates that over 27 million people served as informal caregivers in 1997, providing the economic value of $196 billion in uncompensated services. Such caregivers often must forego economic and personal opportunities due to these responsibilities, and some develop health problems as a result of the physical and emotional burdens. Critics of the informal support model often say that it results in an unhealthy dependence of people with disabilities on family members, and resentment by the family members who are not able to pursue their interests.
The vast majority of funded long-term care services in this country are provided under the "medical model," in which health care workers provide services under the supervision of physicians and nurses. The largest sources of financing for U.S. long-term care are the federal Medicaid program and patient out-of-pocket spending, and the majority of such funding is spent on nursing home and home health services under the medical model. Due to the substantial financial burden imposed on patients who have too many assets to qualify for Medicaid but not enough to pay the enormous costs of institutional long-term care, many of these individuals impoverish themselves until they spend down sufficient assets to become Medicaid-eligible.
One long-term care option that is growing in popularity, particularly among working-age individuals with disabilities and chronic conditions, is consumer-directed personal assistance services under the independent living model of long-term care. Under this model, individuals receive services in their homes from one or more personal assistants who are not trained as health care workers or supervised by health care professionals. Typically, the consumer advertises for assistants in a local newspaper, interviews them, and informs them of the requirements and benefits of the position. The individual receiving the service is considered an autonomous, self-directed consumer (rather than a patient), who hires, trains, supervises and, if necessary, fires his or her personal assistant(s). This independent living model, which gives consumers substantial control over their personal assistance services, may be contrasted with the medical model and the informal support model in which others often control the timing and manner in which services are provided.
Despite significant benefits in terms of consumer autonomy, satisfaction, and improved health and function, the independent living model is not currently available to many individuals who prefer it. This model is used primarily by people with disabilities who are gainfully employed and who pay for the services out-of-pocket, as well as paralyzed veterans and some Medicaid recipients in states that permit payment for long-term care under this model. Most people with disabilities have no choice but to rely entirely on the informal support model or the medical model. In either case, they often have little control of the services upon which they depend.
One powerful legal requirement that is now being used by some individuals with disabilities to gain access to personal assistance services under the independent living model is that long-term care services must be provided in the "most integrated setting appropriate" to the needs of the consumer. This requirement is contained in three federal statutes that impact long-term care in this country--the Developmentally Disabled Assistance and Bill of Rights Act (DDABRA), section 504 of the Rehabilitation Act of 1973 ("the Rehabilitation Act"), and the Americans with Disabilities Act of 1990 (ADA). This article considers these most integrated setting statutory provisions, their interpretation in the Supreme Court decision of Olmstead v. L.C. ex rel. Zimring, and their use as levers for expanding access to consumer-directed long-term care services under the independent living model.
Section II of this article provides further information on the independent living model of long-term care relevant to analyzing how it is affected by most integrated setting requirements. Section III provides background on the Medicaid program and other sponsors of long-term care, including the Medicaid home and community-based waiver program authorized under section 1915(c) of the Social Security Act. Section IV discusses the relationships between the DDABRA, the Rehabilitation Act, and provision of long-term care in the most integrated setting appropriate. Section V considers the ADA and its most integrated setting requirement. Section VI analyzes the Olmstead decision, which has significant implications for long-term care and personal assistance services. Section VII applies the Olmstead decision to other circumstances involving long-term care, including the care of working-age people with physical disabilities who are on Medicaid. Finally, Section VIII presents conclusions on implications of the analysis concerning the independent living model.
| This publication can be purchased from American Society of Law, Medicine & Ethics, 765 Commonwealth Avenue, Suite 1634, Boston, MA 02215, Tel: 617-262-4990, Fax: 617-437-7596, Web site: http://www.aslme.org/order |
Merril Silverstein, University of Southern
California
Tonya M. Parrott, Quinnipiac University
Reprinted from
RESEARCH ON AGING, Volume 23, Number 3, Pages 349-374, May 2001, © 2001
Sage Publications, Inc.
With the aging of the population, families are increasingly likely to confront the caregiving needs of their older parents, grandparents, and other disabled relatives. This analysis uses national survey data to examine the preferences of Americans for public programs that directly assist caregivers in their activities. Respondents were asked whether they agreed or disagreed with the following three policies: directly paying caregivers, granting tax credits to caregivers, and requiring that employers grant time off without pay to caregivers. Although only one-third of respondents agreed with the idea of paying caregivers, more than 70 percent supported tax credits, and almost 60 percent supported time off to caregivers. Multiple regression reveals that current caregivers more strongly support all three policies, even when controlling for demographic factors, resources, values toward family responsibility, and political orientation. The results suggest that public policies that marshal informal services in support of dependent relatives will find greater favor because they enable the altruistic impulses of families to be fulfilled.
| This publication can be purchased from Sage Publications, Inc., 2455 Teller Road, Thousand Oaks, CA 91320, Tel: 800-583-7243, Fax: 800-583-2665, E-Mail: info@sagepub.com, Web site: http://www.sagepub.com |
Donna Wagner, Pamela Nadash and Charles Sabatino
July 1997
This document describes the highlights of the "Autonomy or Abandonment: Changing Perspectives on Delegation Symposium" and the findings of a state survey on delegation undertaken for the symposium. It also gives an overview of the legal and regulatory issues involved in delegation and provides a backdrop of the factors influencing our approach to delegation and in the country today. It is the hope of the staff of the National Institute on Consumer-Directed Long-Term Services and the Planning Committee for the symposium--representatives of stakeholder groups--that the reader finds this document a valuable resource for their own exploration of the increasingly important issues surrounding delegation and our common concern with enhancing the safety, independence, and autonomy of persons with long-term service needs.
| The Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Leslie Foster, Randall Brown, Barbara Carlson, Barbara
Phillips and Jennifer Schore
October 2000
This paper describes the experiences of 194 early clients in the Arkansas Cash and Counseling Demonstration, IndependentChoices. The description is based on the clients’ responses to a telephone survey conducted about nine months after they applied to enter the program and were randomly assigned to the demonstration’s treatment group to receive a monthly cash allowance. After briefly describing the Arkansas project, data and methods used, and client characteristics, this paper discusses client outcomes in four areas: (1) program participation; (2) uses of services, goods, and cash; (3) hiring of caregivers and revision of cash expenditure plans; and (4) satisfaction.
| The Executive Summary and Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Mathematica Policy Research, Inc.
Issue Brief:
Trends in Consumer Choice, December 2000, Number 1
This brief is based on Mathematica's evaluation of Cash and Counseling, a three-state demonstration in' which Medicaid enrollees eligible for personal assistance services and other paid help around the home and community get a monthly cash allowance to purchase these services and related goods, instead of obtaining them through a home care agency. They also receive counseling to help plan their purchases. The three states included in the demonstration are Arkansas, Florida, and New Jersey.
| The Full PDF Report available here, or can be ordered from Mathematica Policy Research, Inc., P.O. Box 2393 Princeton, NJ 08543-2393, Fax: 609-799-0005, E-mail: jallen@mathematica-mpr.com, Web site: http://www.mathematica-mpr.com. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report. |
Pamela Doty, Judith Kasper and Simi
Litvak
Reprinted from The Milbank Quarterly, Volume 74, Number 3,
1996
In this article, the authors compare and contrast alternative approaches to administering programs, financed under the Medicaid personal care services optional (PC Option) benefit, that make attendant services available to low income elderly and disabled persons in need of help with daily living tasks. The analyses address the following issues: (1) By how much do state Medicaid PC Option programs vary in terms of their administrative features that promote greater consumer choice and control or, conversely, in their emphasis on professional oversight and accountability? (2) To what extent have program administrators actively fostered consumer-directed care models? (3) What are the decisionmaking trade-offs in terms of Medicaid PC Option costs per hour of attendant service, coverage for high-need clients, perceived risks to quality, or other liability concerns associated with consumer direction versus professional management of attendant services? (4) To what extent do clients report having greater choice and control over attendant services in some states' Medicaid PC Option programs as compared to others? (5) Does greater client choice and control result in higher client satisfaction with attendant services?
| The Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Susan A. Flanagan and Pamela S. Green
October 24,
1997
This final report provides practical advice to state program administrators regarding the implementation of consumer-directed personal assistance service (CD-PAS) programs and intermediary service organizations (ISOs). In particular, Chapters III, V, and VI, taken together, constitute an informal manual of advice from which state program administrators can design optimal CD-PAS programs using ISOs which are based on sound, regulatory principles and well-drafted contracts. Overall, this final report assists state program administrators in designing CD-PAS programs with ISOs that: (a) comply with applicable federal tax and labor laws; (b) make available supportive services that some consumers may want or need; and (c) allow for the application and enforcement of any limitation or restrictions on consumer direction that may be required by state laws and regulations.
| The Executive Summary or Full PDF Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report. |
Health Care Financing Administration
CFDA
No.93.779, May 17, 2001
The Health Care Financing Administration (HCFA) is inviting proposals from States and others, in partnership with their disability and aging communities, to design and implement effective and enduring improvements in community long term support systems. These systemic changes will be designed to enable children and adults of any age who have a disability or long term illness to:
Four distinct grant solicitations comprise the "Systems Change for Community Living" grants that are the subject of this coordinated invitation. They are:
"Nursing Facility Transitions" grants: HCFA is making available between $10-$14 million to help States transition eligible individuals from nursing facilities to the community. Two types of grants are offered: State Program grants will be made to support State program initiatives; "Independent Living Partnership" grants will be made to selected Independent Living Centers (ILCs) to promote partnerships between ILCs and States to support nursing facility transitions.
"Community-integrated Personal Assistance Services and Supports" grants: Personal assistance is the most frequently used service that enables people with a disability or long term illness to live in the community. Grants totaling $5-$8 million are available to support States' efforts to improve personal assistance services that are consumer-directed or offer maximum individual control.
"Real Choice Systems Change" grants: The goal is to help design and implement effective and enduring improvements in community long term support systems to enable children and adults of any age who have a disability or long term illness to live and participate in their communities. Approximately $41-$43 million is available in direct grants to States.
"National Technical Assistance Exchange for Community Living" grant: This national technical assistance initiative will provide technical assistance, training, and information to States, consumers, families, and other agencies and organizations. Funding for the technical assistance will range from $4-$5 million.
Grant applications will be due in July 2001. We expect all grant awards to be made prior to October 1, 2001. States will have up to 36 months to expend these funds. Grantees are not required to provide a financial match, but a small non-financial recipient contribution from Grantees and/or a third-party "in-kind" contribution is required.
For more details and news about events relevant to these grant invitations, please periodically consult our web site at http://www.hcfa.gov/medicaid/systemschange.
| Timetable | ||
|---|---|---|
| Milestone | Date | Content |
| "New Tools" Letter | January 10 | This letter, addressed to State Medicaid Directors, was intended as an early alert to the new grant opportunities. |
| "Starter Grants" | Announced February 25; Deadline June 1, 2001 | These non-competitive, $50,000 grants available to each State were intended to support consumer task forces, public-private partnerships, and initial planning for the "Systems Change" grants. |
| Grant Solicitations Issued | May | |
| New Opportunities for Community Living: A Systems Change Conference | May 24 and May 25 | This national conference is targeted towards States, consumers, providers, and advocates to share information and ideas on home and community based system initiatives.1 |
| Letter of Intent to Apply Due | June 8, 2001 | |
| Applicant's Teleconference | TBD | Additional information regarding registration for this teleconference will be posted on the HCFA web site at http://www.hcfa.gov/medicaid |
| Application Due Dates - Technical Assistance Exchange - Nursing Facility Transitions - Community PASS - Real Choice Systems Change |
July 16 July 20 July 20 July 20 |
|
| Grant Period Start Date | Prior to October 1, 2001 | |
| 1. Information on this conference was previously distributed through the Home and Community Based Services Resource Network. For additional information go to: http://www.hcbs.org. | ||
| The Full PDF Report available here, or can be ordered from the HHS Centers for Medicare and Medicaid Services (formerly HCFA), Web site: http://hcfa.gov/medicaid/systemschange. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report. |
Reprinted from the Quarterly Journal of the American
Society on Aging
Volume 24, Number 3, Fall 2000
Full Journal "Introduction" and introductions/initial sections of each article are included below.
Introduction
Robyn I.
Stone
Over the past decade, researchers and policy makers have begun to pay increasing attention to consumer direction in long-term care. A number of factors, including aggressive advocacy on the part of younger people with disabilities, a growing consumer movement in health and long-term care, concerns about the costs of long-term-care services, and the recent shortage of frontline workers, have contributed to this heightened interest in consumer direction.
I have had a long-standing interest in consumer direction as a researcher and policy maker responsible for aging and long-term-care policy in the U.S. Department of Health and Human Services. I was, therefore, delighted when the Generations editorial board asked me to serve as guest editor for a special issue on this topic. The expert contributors to this issue reflect the broad range of policy, practice, and research perspectives that are critical to our understanding of how consumer direction in long-term care evolved, the opportunities, challenges, and limitations of this approach, and future directions for the financing and delivery of long-term care.
Defining Consumer Direction
As policy makers begin to explore the potential and pitfalls of consumer direction in long-term care, it is critical to provide a clear definition of the concept and to identify the parameters of this approach. Consumer direction in long-term care starts with the premise that individuals with long-term-care needs should be empowered to make decisions about the care they receive, including having primary control over the nature of the services and who, when, and how the services are delivered. Consumer direction also assumes that long-term care is predominantly nonmedical, focused on primarily low-tech services and supports that allow individuals with disabilities to function as independently as possible. Thus, the consumer should not be forced to rely on professionals to make key decisions about care and to be "managed" by a formal system.
Consumer direction is not one strategy. It reflects a continuum of approaches based on the level of decision making, control, and autonomy allowed in a particular situation. The cash model is at one end of the consumer-direction continuum. This approach assumes that people know what they need and how to purchase it. Cash benefits tied to level of need or some other criterion provide the long-term-care consumer with the greatest flexibility in using resources to meet particular needs. The consumer decides how to best use the dollars, including purchasing services from a formal vendor, hiring a next-door neighbor to help with activities of daily living, purchasing some type of assistive technology to enhance independence, or modifying the person's own home to make it possible to remain in the community.
Professionally managed service packages are at the other end of the consumer-direction continuum. Most publicly funded home- and community-based care programs, in which beneficiaries have access to a set of prescribed services, fall into this category. Typically, a professional care manager develops a care plan tailored to the needs of a particular client. Even within this approach, however, there is the potential for consumer direction. The extent of consumer direction is determined by the degree to which the client is proactive in the development and ongoing implementation of the care plan and has some control over other decisions related to service delivery.
Approaches reflecting increasing levels of consumer direction lie between these two extremes. Within some programs with service packages, clients have the discretion to hire and fire their own workers and to decide how and when services will be provided. Some programs allow individuals to hire family members as caregivers. Voucher programs fall short of allowing full client discretion through a true cash model, but within some constraints they do afford long-term-care consumers great flexibility in how and where benefits can be used.
To date, researchers and policy makers have considered consumer direction primarily within the context of homecare. In theory, the cash model provides the consumer with the discretion to purchase services in any setting. In reality, the amount of available dollars limits the purchase of facility-based care. At the same time, it would be a mistake to dismiss the potential of consumer direction in congregate settings. The underlying philosophy of assisted living, for example, requires that the resident have significant decision-making authority. Even in the nursing home, it is possible to provide residents with the opportunity to direct their care.
In defining consumer direction, it is important to note that this concept is related to but is not synonymous with consumer choice. With the advent of managed care and Medicare offering (at least in theory) a range of plans as well as a fee-for-service option, the elderly and younger disabled are facing more choices in how they receive their healthcare. Individuals also have choices in long-term care, although the costs of options such as assisted living or intensive homecare may limit accessibility for low- and moderate-income people and their families. Consumer direction, however, focuses more specifically on the degree to which people are proactive in making the decisions about care, including the hiring and firing of workers and the management and oversight of services. It is most appropriate for meeting nonmedical, personal care and other daily living needs that do not require the training, expertise, and judgment of professionals. Furthermore, because long-term care involves the quality of housing and other living arrangements as well as services, consumer direction has the potential for providing flexibility in the ways these needs can be met.
Policy Environment
Consumer-directed approaches to providing long-term care have gained prominence at both the federal and state levels over the past decade. There is, however, much ambivalence toward this concept, particularly the cash option and models that allow care recipients to pay family and friends as formal caregivers. Americans and their policy-making representatives in Washington and across the states embrace a consumer-directed approach when it is presented in the form of a tax deduction or credit for the purchase of private long-term-care insurance or a tax credit to the care recipient or informal caregiver for direct services purchased privately. Using private mechanisms such as the tax code puts dollars in the pockets of individuals and their families and allows them to use broad discretion in how these funds are used. This private form of consumer direction resonates with the rugged individualism of American capitalism and the public's desire to make their own choices with minimal government interference.
On the other hand, when it comes to public programs and public dollars, there is evidence that the "deserving" and "undeserving" are treated differently. Policy makers, who ostensibly reflect the public's view, have no qualms about allowing individuals to exercise full discretion in how they purchase long-term care in the private sector. They are eager, in fact, to reward them through tax breaks and other financial incentives. The guardians of public long-term-care programs, however, are reluctant to offer consumer-directed options to low-income clients. There is tremendous concern about fraud and abuse, particularly where cash might be offered in lieu of a defined service package. It is assumed that at least a proportion of these individuals and their families would either use the funds for non-long-term-care purchases or would be incapable of making prudent decisions. Many policy makers also express grave concerns about paying family members for services that they should be providing for "free." In addition, much of the opposition to consumer direction emerges from concerns about lack of accountability and the inability to adequately protect long-term-care consumers from physical and emotional harm.
It is interesting to note that many Western European countries have pursued consumer-directed long-term care in the public sector through options ranging from caregiver and disability allowances to cash benefit programs based on social insurance. Concerns about fraud and abuse and accountability have not emerged as major deterrents to implementation in these other industrialized societies.
Despite serious reservation, many state policy-makers in the United States are finding consumer direction increasingly appealing for two reasons. First, there is the potential for cost savings. Most programs with a cash option, for example, discount the actual amount paid to the clients relative to the cost of a comparable service package. Savings are also realized through the reduction in administrative costs that would have been accrued in managing a service-package program. Policy makers are also interested in exploring consumer direction because of the growing shortage of frontline workers to deliver long-term care across all settings. Consumer-directed approaches afford much more flexibility in hiring workers (including relatives and friends), thus expanding the potential pool of caregivers. Finally, policy makers are interested in developing programs that address the preferences of their constituents. Consumer-directed long-term care is viewed as a way to empower consumers, affording them more choice and an increased role in making the decisions that directly affect them.
In This Issue
This issue of Generations provides a broad overview of consumer direction in long-term care, reflecting a range of perspectives from diverse stakeholders. Nancy Eustis sets the context for understanding the development of this approach by providing a brief history of this concept. She describes the evolution of consumer direction from its roots in the independent living and self-determination movements catalyzed by younger people with physical and developmental disabilities. She also highlights the ambivalence of the aging advocacy community toward this model but notes that elements of consumer direction have increasingly been present in aging services (e.g., control and autonomy, self-care).
Marshall Kapp notes that the current paradigm shift toward more consumer choice and control regarding the details of home health and personal assistance services implicates a variety of emerging legal issues. His article pays particular attention to the law's likely impact on quality assurance, consumers' rights, and workers' interests under long-term-care delivery and financing models that emphasize consumer direction. He argues that a movement away from extensive command and control regulation toward more emphasis on the role of consumer direction in a competitive long-term-care marketplace does not reduce the importance of the law in delineating and enforcing rights and responsibilities in this arena.
Pam Doty provides important insights into the federal policy perspective on consumer direction in long-term care. She uses her agency's leadership role in developing the Cash and Counseling Demonstration to illustrate how federal interest in this approach evolved over time and to identify some of the key barriers to adoption of this model. Linda Velgouse and Virginia Dize summarize the findings from their survey of state administrators on consumer-directed home- and community-based services. They also describe the development of a self-assessment tool by the National Association of State Units on Aging. As of this writing, ten states have volunteered to use this tool, which includes six broad categories of consumer direction "benchmarks."
Complementing this overview of state consumer-direction initiatives, Lori Simon-Rusinowitz and colleagues present findings from telephone interviews conducted with policy experts from the aging and disability communities. Kevin Mahoney, Kristin Simone, and Lori Simon-Rusinowitz highlight early implementation lessons from the Cash and Counseling Demonstration and Evaluation (ccde), a multistate project funded by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services. ccde offers Medicaid Personal Assistance Services (pas) users, elderly and younger people with disabilities, a cash allowance and support services as an alternative to traditional agency-delivered pas services. As these researchers note, this large-scale demonstration provides a unique opportunity to assess the best approaches to developing an outreach and enrollment strategy, counseling and fiscal intermediary programs, and a system for quality monitoring.
Lynn Friss Feinberg and Claudia Ellano highlight California's Caregiver Resource Center as a model for promoting consumer direction in an agency-driven program for family caregiver support. They note that consumer direction poses challenges to traditional assumptions held by many practitioners who consider that professional intervention is not only appropriate, but required, based on the client's disability, age, or functional status.
Marisa Scala and Tom Nerney underscore the fact that it is people who are at the heart of the movements toward consumer direction and self-determination. These authors discuss four populations that have been involved in the struggle for consumer direction: older adults, younger adults with physical disabilities, people with developmental disabilities, and those with cognitive disabilities.
Mary Ann Wilner discusses the implications of consumer-direction for the frontline worker--the homecare aide or personal-care attendant who is employed directly by the consumer or the consumer's family. She outlines both the advantages and disadvantages of this model for the paraprofessional worker, including the opportunity for more autonomy and control, but also the potential for exploitation and abuse. In this article, Wilner describes the tensions between the needs and preferences of consumers and workers and reviews the role of mechanisms such as fiscal intermediaries, registries, unions, and public authorities in balancing the needs of the care recipient and the caregiver.
Scott Miyake Geron presents an approach to assuring quality of consumer-directed long-term-care programs that is based on the views of consumers and other consumer-derived quality measures as well as more traditional approaches. He discusses the failure of traditional approaches to assuring quality and notes that consumers define quality differently from professionals and other stakeholders. He also outlines the principal challenges to assuring quality.
Aging is a global phenomenon, and we have a lot to learn from the experiences of other countries that have implemented consumer-directed policies and programs to finance and deliver long-term care. Jane Tilly, Joshua Wiener, and Alison Cuellar analyze the experiences of Germany, Austria, the Netherlands, and France and compare them with selected U.S. programs in California, Colorado, Kansas, Maine, Michigan, Oregon, Washington, and Wisconsin. Based on interviews with researchers and key stakeholders in each country and state and an extensive review of the literature, these authors describe the range of program designs, highlight the experiences of beneficiaries, their family caregivers, and their workers, and review emerging issues related to quality of services and the potential for cost containment.
To help readers understand the potential and pitfalls of consumer-directed long-term care in the real world, this issue showcases a number of programs that have implemented elements of this model. Ted Benjamin and Ruth Matthias briefly summarize findings from their study of California's In-Home Supportive Services program, which is large and well established and offers both agency and consumer-directed services. In the latter mode, the state delegates all responsibilities for recruiting, hiring, training, and supervising their worker to the client, with direct state payment to workers for certified hours of care delivered. Sue Flanagan and Pamela Green describe three fiscal intermediary models that are used to help facilitate consumer direction.
Diane Wong describes a rapid-response worker replacement program being implemented by the public authority operating in Alameda County, California. This function is key to enabling individuals to maintain their selected homecare workers and to avoid unnecessary 911 calls or institutionalization and escalating urgent situations. Kathy Dwyer describes the American Indian Choices Project, which is a self-directed method for developing aging program changes that are consistent with the Americans with Disabilities Act and that are respectful of tribal culture and sovereignty. Ruth Rothbart Mayer, Jean Marks, and Ann Berson describe a consumer-directed assistance program for people with cognitive impairment in New York City.
Conclusion
Consumer-direction in long-term care has become part of the lexicon among state and some federal policy-makers. This approach to financing and delivering long-term care was the focus of much attention at the most recent annual National Conference on Home and Community-Based Services. Policy makers, program directors, and researchers struggled with definitions of this concept and how it is being operationalized in programs serving a diversity of people with disabilities. They debated the advantages and disadvantages of this approach and articulated their concerns about consumer and worker protection, quality of care, and accountability. Clearly, consumer direction is not an option for all people with long-term-care needs, but it may prove to be an effective and efficient way to allocate precious resources to an important subset of this population. Although little empirical research has tested the perspectives of stakeholders who support or oppose this model, forthcoming findings from the Cash and Counseling Demonstration and other studies as well as the implementation experiences of ongoing programs may help guide the direction and magnitude of this emerging trend.
Consumer-Directed Long-Term-Care
Services: Evolving Perspectives and Alliances
Nancy N. Eustis
(INTRO ONLY)
Young adults with physical disabilities, people of all ages with cognitive impairments, and older people with functional impairments share many of the same needs for services and adaptations. However, the professionals and advocates that have traditionally been aligned with each of these groups have different histories and styles of addressing those needs. They typically differ regarding what they mean when they refer to "consumer direction" and how consumer-directed services should be implemented. For purposes of this essay, consumer direction is defined as choice of services and provider as well as control over how services are provided.
Consumer Direction in Long-Term
Care: A Taxonomy of Legal Issues
Marshall B. Kapp
(INTRO ONLY)
The activities of home health agencies are highly regulated, primarily for the purposes of assuring that the quality of services the agencies provide meets defined minimum levels and protects the rights and interests of service consumers and agency employees. This regulation takes a panoply of forms, including the following: state licensure of agencies and the individual professionals whom agencies employ or with whom they contract; federal Medicare and Medicaid Conditions of Participation, 42 C.F.R. Part 484 and 42 C.F.R. § 440.70(d); peer review organization assessment of compliance with professionally recognized standards of care; tort litigation seeking financial recovery for alleged injury directly caused by professional malpractice; and antifraud and abuse, antitrust, and other laws attempting to control the amount and propriety of financial payments made to home health agencies.
As described in this issue of Generations, various alternative models are evolving in the United States (and elsewhere) seeking to maximize the extent of consumer involvement in formulating and implementing publicly funded long-term-care plans. Under these models, the consumer (or the consumer's surrogate decision maker) may choose to purchase specific healthcare components of an individualized service plan from formal home health agencies or may utilize independent service providers to satisfy healthcare or personal-care needs.
The paradigm shift away from the traditional, highly regulated agency model of publicly supported long-term care toward delivery and financing models within which the consumer is empowered to control the who, what, where, when, and how details of the service plan creates new sets of relationships and raises many new legal concerns about the respective rights and responsibilities of the parties to those relationships. This article presents a brief taxonomy of some of the most salient of these evolving issues.
The Federal Role in the Move Toward
Consumer Direction
Pamela Doty
(INTRO ONLY)
Since the early 1990s, the Office of Disability, Aging, and Long-Term Care Policy (DALTCP), a division of the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services (DHHS), has made consumer direction in long-term care a major focal point of our policy research agenda. The largest and most visible of its research initiatives on consumer-directed services is the Cash and Counseling Demonstration and Evaluation, a large-scale social experiment designed to explore the possibilities and test the limits of consumer direction in publicly funded (Medicaid) home and community-based services programs. Mahoney and colleagues describe this project in detail in this issue. This article is intended to provide historical perspective on the federal government's involvement in the Cash and Counseling Demonstration and Evaluation as an example of the federal role in consumer direction. Specifically, the article describes how previous research and analysis led to DALTCP's interest in sponsoring this social experiment and shaped our thinking about is purpose and design.
The immediate antecedents of Cash and Counseling can be found in the long-term-care proposals included in President Clinton's 1993 Health Care Reform Plan. However, in a deeper sense, understanding where the idea came from requires situating this project in the context of a research tradition that includes previous and ongoing federally sponsored research on "consumer-direction," interest in learning from foreign models of providing publicly funded home- and community-based services, and reflection on the lessons learned from previous social experiments focusing on home- and community-based "alternatives to institutional care," in particular, the Channeling Demonstration.
Although Cash and Counseling is the centerpiece of DALTCP's research agenda on consumer direction, the project is not ours alone. The design and implementation of the demonstration and its controlled experimental design evaluation would have been impossible had DALTCP, a small research and policy analysis office with limited resources, not been able to enter into and sustain a complex partnership involving a major private philanthropy, multiple federal agencies both within and outside to the Department of Health and Human Services, several states (and multiple agencies within each of those states), two universities, an independent research organization, a major national advocacy group, as well as numerous private consultants.
It is particularly important to acknowledge the key role of the Robert Wood Johnson Foundation in joining us to sponsor Cash and Counseling as well as the RWJF's sponsorship of related research and demonstration projects that have influenced the experiment. Certainly, without the foundation's financial support, there would be no Cash and Counseling Demonstration and Evaluation. Although DALTCP is a cofunder with the RWJF of the rigorous scientific evaluation, the RWJF has provided all of the funding for the demonstration itself; that is, the planning and implementation grants to the participating states as well as funding for oversight, coordination, and technical assistance provided by or through the national program office for Cash and Counseling at the University of Maryland Center on Aging. Kevin Mahoney, national program office director, and Lori Simon-Rusinowitz, deputy director, have provided indispensable day-to-day leadership. We also appreciate the willingness of four states, Arkansas, New York, New Jersey, and Florida, to participate as demonstration sites. Although New York was unable to continue, Arkansas, New Jersey, and Florida have gone the distance from planning to implementation; indeed, Arkansas is approaching completion of the evaluation phase of its demonstration (December 31, 2000).
The cooperation of several other federal agencies in granting "research and demonstration" waivers or exemptions to laws and regulations applying to Medicaid, Supplemental Security Income (SSI), Food Stamps, and other means-tested government benefits also merits recognition. The Health Care Financing Administration approved Medicaid waivers under Section 1115 of the Social Security Act. Waivers were required to permit Medicaid funds that otherwise would have purchased personal care services under the Medicaid state plan (New Jersey, Arkansas) or 1915(c) home- and community-based services (Florida) to be paid out as monthly cash allowances available to beneficiaries instead of as reimbursements to service providers. These "1115" waivers were also necessary to permit Medicaid beneficiaries to use their cash benefits to purchase disability-related goods and services not otherwise covered under Medicaid and to suspend the prohibitions against certain family members (spouses and parents of minor children, whose income and assets are deemed available to Medicaid beneficiaries for purposes of financial eligibility determinations) being paid caregivers.
The Social Security Administration and the U.S. Department of Agriculture also agreed to exempt participants in the treatment group from rules related to means-testing that might otherwise have jeopardized treatment group members' eligibility for cash assistance (SSI) payments and Food Stamps. Both agencies have statutory authority to relax these rules in the interests of research, contingent on impact analyses being performed. Although both agencies were highly willing to cooperate, some time-consuming, detailed work was required to decide exactly what types of information the evaluation needed to collect to determine the demonstration's impact on recipients of SSI and Food Stamps. Less formalized understandings were also reached with the Department of Housing and Urban Development (HUD) and the Department of Education to ensure that cash benefits for disability-related services provided under the Cash and Counseling Demonstration would not adversely affect recipients otherwise eligible for low-income housing or income-related educational and vocational rehabilitation benefits.
In sum, policy research involving social experimentation on a large scale requires a considerable investment not only of finances but in team building and teamwork. Leadership and management of the Cash and Counseling Demonstration and Evaluation--which also has been a team enterprise--require holding firm to the original goals of the research and protecting the scientific integrity of its design and methodology while also negotiating for the project's survival and successful implementation within a socio-political-economic environment that is in constant flux.
A Review of State Initiatives
in Consumer-Directed Long-Term Care
Linda Velgouse and Virginia
Dize
(INTRO ONLY)
Starting with the independent living movement of the seventies, consumer direction has gained momentum among consumers, providers, state administrators, and policy makers. The advantages of consumer direction, which include increased satisfaction and quality of life for consumers, are become widely accepted. But while the number of state initiatives and consumer-directed programs has increased, they continue to be a small part of the long-term-care service system, and they remain varied in size, services offered, populations served, and the degree of control provided to consumers.
The differences among programs result at least partially from the range of options encompassed by consumer direction. By definition, consumer direction includes a continuum that ranges from consumers having a role in developing their plan of care to having complete control over services, choice of providers, and payment for services. Differences also stem from the varied levels of commitment and understanding by those who must implement these new programs and from the barriers to consumer direction inherent in the long-term-care service system. These barriers are primarily programmatic, regulatory, and attitudinal--the last of which is most common in aging services.
The National Council on the Aging (NCOA), a national membership organization, is among those who have worked to advance consumer direction. NCOA has developed a definition of consumer direction and criteria for assessing the level of consumer direction offered by programs, collected information on consumer-directed programs, and managed research and demonstration projects. This article reports on NCOA's two most recent efforts to advance consumer direction: findings from the Survey of State Administrators on Consumer-Directed Home and Community-Based Services, and the state initiatives affiliated with the Independent Choices Program.
Implementation Issues for
Consumer-Directed Programs: A Survey of Policy Experts
Lori
Simon-Rusinowitz, Anne Marie Bochmiak, Kevin J. Mahoney, Lori N. Marks and
Dunya Hecht
(INTRO ONLY)
The aging community's approach to homecare services has been changing during the past decade. While many long-term services for older people remain traditional in nature (i.e., arranged for consumers by professionals with minimal consumer input), an increasing number of community providers and consumers of long-term care support more consumer control and choice within service delivery. This consumer-directed approach to providing homecare services has been spearheaded by the disability community, which refers to these services as personal assistance services.
While many older people might benefit from consumer-directed services, researchers have limited knowledge about implementing such programs for elders. Researchers have only recently begun to address such questions as how many older consumers would prefer consumer-directed services and what consumer characteristics would lead to a choice for more autonomy. These researchers surveyed personal-care consumers to determine their preferences for "cash and counseling," a consumer-directed option that offers a cash allowance and information services to people with disabilities. The cash allowance enables consumers to purchase needed services and products that help maintain their independence. The survey showed that a sizable number of older consumers were interested in this consumer-directed choice, although interest was higher among younger consumers.
As interest in consumer-directed services grows, many additional questions need answers regarding how to adapt a consumer-directed approach to homecare services for older people. This article presents findings from telephone interviews conducted with twenty policy experts from the aging and disability communities. The purpose of the study was to assess implementation issues that arise when adopting a consumer-directed approach to aging services and to inform the design of the Cash and Counseling Demonstration and Evaluation (CCDE), an ongoing demonstration of a consumer-directed program offering a cash benefit (see Mahoney, Simone, and Simon-Rusinowitz, this issue, for a detailed description of the project).
Our research questions attempted to assess interest in adopting a consumer-directed approach to service delivery for the elderly community and to address implementation issues as they relate to consumers, providers, payers, and policy makers. We asked policy experts to address several issues: Do older consumers desire this type of service, and are their wants and needs different from those of their younger counterparts? If so, how? Do older consumers want to become employers of their personal attendants, charged with the responsibilities of hiring, training, managing, and paying their employees? Are these preferences related to age or other consumer characteristics (e.g., degree and type of disability)? How can consumer-directed programs balance the sometimes conflicting goals of maximum consumer independence, quality assurance, and accountability for public funds? How do providers accustomed to being in charge make a shift to consumer direction? In order to facilitate future innovations in healthcare, it is important to examine the key issues in introducing consumer-directed principles into healthcare programs for the aging and disability communities.
The following sections summarize the experts' views about implementing consumer-directed programs and barriers to implementation from four perspectives: those of consumers, providers, payers, and policy makers. We conducted twenty in-depth telephone interviews (averaging seventy-six minutes in length) with policy experts from the aging and disability communities, including program administrators and leaders in home- and community-based services. Their affiliations included universities, federal and state government, non-university research settings, national associations, private consultants, a private foundation, and a health insurance company. The interviews took place over a period of one year, from September 1996 through August 1997.
Early Lessons from the Cash and
Counseling Demonstration and Evaluation
Kevin J. Mahoney, Kristin
Simone and Lori Simon-Rusinowitz
(INTRO ONLY)
Today, in most states, whether you are an elderly individual or a younger person with disabilities, if you are covered by Medicaid and need assistance to perform major activities of daily living like bathing, dressing, using the toilet, transferring from one place to another, or eating, you will not have much say over who helps you or when they come--never mind what they actually do. For years, people with disabilities have been saying, "If I had more control over my services, my quality of life would improve, and I could meet my needs for the same amount of money or less." The project described in this article is, at its heart, a policy-driven evaluation of this conviction. The Cash and Counseling Demonstration and Evaluation, funded by the Robert Wood Johnson Foundation (RWFJ) and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services, provides a test of one of the most unfettered forms of consumer direction, offering consumers a cash allowance in lieu of agency-delivered services.
Promoting Consumer Direction
for Family Caregiver Support: An Agency-Driven Model
Lynn Friss
Feinberg and Claudia Ellano
(INTRO ONLY)
You probably know someone like Judy Smith, She is 53, married, has two teenage children at home, and has a career as an architect. A year ago, her widowed mother moved into her home after being diagnosed with Parkinson's disease and dementia. At that time, Judy was forced to give up a challenging project in her firm because it would have required her to travel three days a month. Since her mother needed constant care, Judy was no longer able to attend business meetings at night; her days and nights were very demanding and stressful for her and her family because of her caregiving role. She was becoming increasingly exhausted and took an unpaid leave of absence from her job, resulting in considerable financial hardship to her family. Her mother's physician suggested that Judy consider placing her mother in a nursing home--not what she or her mother wanted. The prospect was heartwrenching and an economic nightmare. Fortunately, a friend told her about a Caregiver Resource Center in her community. Over the next four months, the center's family consultant provided Judy with information about the course of the disease and behavior management strategies, arranged for a family meeting to discuss care options, set up a legal consultation with an attorney to consider powers of attorney and other legal matters, held six counseling sessions with Judy to deal with her frustration, confusion, and sense of loss, and offered her several respite care options to consider. Judy elected respite assistance whereby financial support from the Caregiver Resource Center enabled her mother to attend an adult daycare program four days a week. A family friend provided respite relief on Fridays. With this support and respite assistance, Judy was able to return to work and continue caring for her mother at home. She now has more knowledge about Parkinson's disease and dementia, feels more confident in her caregiving role, is better able to deal with her mother's behavioral and functional problems, and is grateful for the respite relief and financial assistance to offset the costs of care. She keeps in touch with the center's family consultant as problems arise or decisions need to be made.
People First: The Consumers in
Consumer Direction
Marisa A. Scala and Tom Nerney
(INTRO ONLY)
Much of the discussion of consumer direction and self-determination focuses on issues, models, and policies. Consumer direction as a philosophy emphasizes consumers' capacity to "assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services they receive." As a practice, consumer-direction consists of consumers making decisions and managing delivery of long-term-care services. Self-determination represents a much broader concept related to individuals' overall control of their lives and ability to participate fully in society and rests on four basic principles: (1) freedom to exercise the same rights as other citizens, (2) authority to control the funding needed for services and support, (3) support through the organization of resources as determined by the person with the disability, and (4) responsibility to use public dollars wisely.
However, at the heart of the movements toward consumer direction and self-determination are, of course, people--the individuals with disabilities who are directing and receiving services and support. In this article, we will discuss four populations that have been involved in the struggle toward consumer direction: older adults, younger adults with physical disabilities, people with developmental disabilities, and those with cognitive disabilities. We will focus on the history of each group in the area of consumer direction, strategies, and supports needed to enhance consumer direction in each community, and special issues to consider for each population.
Toward a Stable and Experienced
Caregiving Workforce
Mary Ann Wilner
(INTRO ONLY)
Recently, my mother received an early morning phone call from her friend, Elaine, who suffers from multiple sclerosis. On this particular morning, Elaine was desperate to find someone to help her get out of bed because her regular homecare worker had unexpectedly cancelled. My mother, almost 78, does not walk well, following a hip fracture, and considers herself fortunate to have found someone to help her with household chores one-half day a week. This woman, Jeanette, a 46-year-old widow from western Africa, came to the United States to live with a brother and find work to support her children back home. One of her children has mental retardation. My mother asked Jeanette if she would be willing to fill in for Elaine's homecare worker for the day. Jeanette confided to my mother her fears that she would harm Elaine, since she did not know how to assist her, that she would end up at the police station if she did harm her, and further, that she might injure herself. Still, she agreed, but she did injure herself trying to help Elaine get out of bed. As a result, Jeanette lost several days of work.
This is not an unusual scenario, and it illustrates many of the complex, interrelated dynamics that make up the business and personal relationships between consumers and paid independent providers who are hired either through the private marketplace or government-subsidized programs. Vulnerable consumers struggle to find reliable caregivers, while compassionate and caring workers lack the support and training they need to provide the quality care consumers deserve. This article addresses the reasons that it is increasingly difficult for consumers to find available and competent workers and the conditions under which many workers are employed in today's homecare market and provides an explanation of several mechanisms that are being used to mediate the needs and desires of workers and consumers.
The Quality of Consumer-Directed
Long-Term Care
Scott Miyake Geron
(INTRO ONLY)
With most of the purchases that people make or the activities they choose to engage in, we do not worry about the quality of those products or services--that's their own business. We leave it to them to decide whether the car that they drive is safe enough, the home that they live in is clean enough, or the food that they eat is healthy enough. The choices people make are an endless source of gossip and commentary, but most acknowledge that people have the right to make those choices.
The fact that we raise the issue of quality in consumer-directed long-term care highlights what is both obvious and unique about long-term care--that adult users of these services have chronic functional limitations, and those with cognitive impairments are often very different from the apocryphal autonomous, well-informed decision makers assumed by economists and libertarians. Even when a person is assuredly compes mentes but only requires long-term care because of physical disability, the issue of quality emerges, although typically as a poor relation to payer concerns about accountability. The public has maintained an interest in the effectiveness and quality of services because of the high costs of publicly supported homecare, concerns about the safety of consumers, and the potential risks of legal liability.
The philosophy of allowing people to have control and autonomy over their own lives and respecting the choices that people make is not new--it is consistent with basic humanistic values that have been articulated in cultures all over the world for hundreds of years. These ideas have been acknowledged for a long time in the "helping professions" such as social work and nursing, and resonate in the ideas of consumer involvement in services and treatment programs in the case management and homecare literature (e.g., Geron and Chassler, 1994).
But it is also true that consumer-directed care is a reaction to decades of care provided according to the dictates of professionals, with the views of consumers rarely addressed or considered. As consumers, patients, or clients, most of us have experienced the "know-it-all" smugness of bureaucrats and the tyranny of professionals who did not take our views seriously. The advocacy of the independent living movement and other disabled-rights advocates (Batavia, DeJung, and McKnew, 1991) in the United States; positive reports from longstanding programs of direct payment to consumers in France, the Netherlands, Germany, and Austria (Tilly, 1999); and newer demonstrations and state programs in the United States and England (Glendinning et al., 2000) have crystallized these arguments in long-term care, and have brought about a significant rethinking of professional approaches to care for adults with disabilities living in the community.
This article presents an approach to assuring the quality of consumer-directed long-term-care programs that is based primarily on the views of consumers and secondarily on other consumer-derived quality measures, as well as more traditional approaches. The reasons for reliance on this new, consumer-oriented approach are as follows: (1) traditional approaches to quality assurance based on standards set by professionals have not worked in long-term care; (2) consumers define quality differently compared to professionals, caregivers, or other stakeholders; and (3) when consumers are given the opportunity to set their own standards of quality for the types of care that they know best--the nonmedical services such as homecare and personal care--they are more satisfied and achieve better outcomes. Quality assurance approaches based on these principles will not diminish quality concerns about these services, but will change their focus. Quality will still need to be measured according to criteria established by professionals, but these criteria should become subservient to consumer-derived measures of quality. Professionally derived criteria should be reserved primarily for instances in which consumers cannot speak for themselves and where there is no reliable proxy to represent their interests, for "high tech" medical situations in which consumers cannot be expected to have the technical knowledge to judge the appropriateness or quality of care, and to set minimum standards of care.
Consumer-Directed Home- and
Community-Based Services Program in Five Countries: Policy Issues for Older
People and Government
Jane Tilly, Joshua M. Wiener and Alison Evans
Cuellar
(INTRO ONLY)
A major innovation in long-term care for older people in the United States and Europe is the development of consumer-directed homecare programs. With government funds, these programs give consumers, rather than homecare agencies, control over who provides services and how these services are delivered. Typically, consumer-directed programs allow the consumer to hire, train, supervise, and fire the homecare worker. In some programs, beneficiaries receive cash payments enabling them to purchase the services they want. In contrast, traditional homecare programs rely on public or private agencies to supply and supervise the workers who serve program beneficiaries.
The empowerment philosophy undergirding consumer-directed homecare has been slow to take hold among programs serving older people because of concerns about whether older people either want to direct or are capable of directing their own services. How to assure quality of care without agency oversight and accountability also has been a major concern.
This article analyzes the development, design, and experience of consumer-directed homecare programs in Austria, Germany, France, the Netherlands, and the United States. The U.S. states included in this study are California, Colorado, Kansas, Maine, Michigan, Oregon, Washington, and Wisconsin. In all of these countries or states, older people can and do participate in consumer-directed programs.
Information for this article comes from two sources. First, we review available quantitative research on program outcomes for beneficiaries, their caregivers, workers, and quality of services from each country. The French and Dutch studies report on demonstration projects that preceded implementation of national programs. Two other Dutch studies surveyed beneficiaries and workers about their experiences several years after implementation of the new national program. Similar surveys of program beneficiaries come from Austria, Germany, and the United States.
Second, we conducted interviews with representatives of government, beneficiaries, unions, and homecare agencies in each country. In total, forty-seven sets of interviews were conducted with government officials and key stakeholders: fourteen with government officials, ten with advocates for younger people with disabilities, six with advocates for older people, ten with homecare agency association staff, and seven with union officials. We asked the people interviewed to share their views of how consumer-directed programs worked in their countries or states.
Comparing Consumer- and
Agency-Directed Models: California's In-Home Supportive Services
Program
A.E. Benjamin and Ruth E. Matthias
(INTRO ONLY)
Until recently, there has been little research to inform the debate about expanding consumer direction to the elderly and other populations with supportive services needs. Most paid supportive services at home are provided by homecare agencies. Critics of this agency approach argue that clients themselves should be organizing and directing their own home-based services, which are personal and mostly nonmedical and thus amenable to individualized design. This article describes a study funded by the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services that was designed to examine the experiences of clients and providers under different supportive-service arrangements in the home. The study compares service experiences and outcomes for clients in a traditional homecare-agency model with those in a consumer-directed model. The locus of the study is California's In-Home Supportive Services (IHSS) program, a large and well-established program that offers both agency-based and consumer-directed services.
Rapid Response: Development of a
Homecare Worker Replacement Service
Diane Wong
(INTRO ONLY)
Mrs. Y is a 72-year-old woman who lives alone and has limited vision because of her diabetes. One morning Mrs. Y's regularly scheduled homecare worker does not arrive. Mrs. Y becomes concerned because she requires meals and snacks at specific times, and she has not been bathed in a few days. Mrs. Y calls Rapid Response, and a homecare worker arrives within one hour. She discusses with Mrs. Y the tasks that need to be accomplished and proceeds to prepare Mrs. Y's meals, assists with bathing, and picks up needed groceries.
Ms. K has an amputated right leg, the result of an accident. She now lives with a roommate. At 4 a.m., Ms. K attempts to go to the bathroom but becomes trapped between her bed rails. Her roommate is unable to free her, so calls Rapid Response. A Rapid Response homecare worker works with Ms. K and the roommate to free Ms. K from the bed. After calming Ms. K, the homecare worker proceeds to provide personal care, changes the bedding, and does the laundry.
Culturally Appropriate
Consumer-Directed Care: The American Indian Choices Project
Kathy
Dwyer
(INTRO ONLY)
In healthcare and long-term care, American-Indian elders may be among the most neglected and underserved populations in the United States. They face the same health-related problems as the general population, but for them these problems are often magnified by such factors as a longstanding lack of tribal health services--particularly in remote locations--cultural tensions, and lack of information. Of the 2.41 million American Indians, nearly 170,000 are 55 years of age and older. Most do live in remote areas, on one of approximately 275 tribal land areas with populations of less than 10,000 people.
Many have had little formal education, and most live well below the poverty level. According to a recent report by the National Indian Council on Aging, Social Security constitutes the only source of income for 30.2 percent of American Indian elders. Moreover, many elders speak English only as a second language, if at all. This, plus a basic distrust of nontribal agencies and professionals, based on a history of broken promises and treaties, causes many elders to avoid seeking basic services to which they are entitled.
Fiscal Intermediaries: Reducing
the Burden of Consumer-Directed Support
Susan A. Flanagan and Pamela
S. Green
(INTRO ONLY)
Consumer-directed modes of financing and delivering home- and community-based support services permit consumers--as opposed to medical or social work professionals--to exercise greater control over the services they receive. These modes allow consumers a broader choice of the providers who can render these services and afford the option of being the employer of record of their support service workers. The programs are popular with consumers, and the number of states that have implemented them has grown significantly over the past decade. However, with increased choice and control come increased responsibilities arising from a myriad of state and federal statutes and regulations governing the employer-employee relationship. As the employer of record in many of these programs, the consumer may be responsible for a broad range of tasks, including (1) recruiting, hiring, and training service workers, (2) defining workers' duties and work schedules, (3) supervising workers as to how specific tasks are to be performed, (4) managing payroll, and (5) disciplining and discharging workers as necessary.
Consumers enrolled in consumer-directed support service programs report that managing employment taxes and preparing and issuing payroll checks is one of the most daunting tasks they perform as employer of record and is the task with which they would most like assistance. Initially, state program administrators and consumers attempted to reduce the employer-related burdens associated with these programs by classifying support service workers as independent contractors. This approach failed because the Internal Revenue Service and the U.S. Department of Labor view most support service workers as household employees. The employer of such workers must pay them and report employment and other taxes associated with such employment in accordance with IRS and Department of Labor rules and regulations. Because of these difficulties, fiscal intermediaries of various kinds have emerged in the marketplace over the past decade to assist individuals enrolled in consumer-directed support service programs.
A Consumer-Directed Homecare
Program that Works for the Cognitively Impaired
Ruth Rothhart Mayer,
Ann Berson and Jean Marks
(INTRO ONLY)
In 1997, the New York City Chapter of the Alzheimer's Association received a three-year grant from the Robert Wood Johnson Foundation to investigate areas of concern and issues facing those caring for an individual with cognitive impairment within consumer-directed homecare. The overall goal of the program was to demonstrate that consumer-directed care is a suitable care option for people with Alzheimer's disease and their designated caregivers. Although a great deal is understood about consumer-directed homecare for people with physical disabilities, little knowledge exists about the needs of the cognitively impaired individual. The project hoped to address this knowledge gap.
| This publication can be purchased from American Society on Aging, 833 Market Street, Suite 511, San Francisco, CA 94103-1824, Tel: 800-537-9728, Fax: 415-974-0300, E-mail: info@asaging.org, Web site: www.generationsjournal.org |
Topeka Independent Living Resource
Center
1997
Your daughter probably only wants what's best for you. What she hasn't heard is the good news in our state about what's called attendant services.
Attendant services are most of what people get in nursing homes. The new thing that's happened here in Kansas is that attendant services can be available to people in their own homes. People don't have to go to a nursing home any more to get help with the things they do when they live on their own.
Your daughter maybe sees that you need assistance with one or more of the ordinary things people do every day--things like getting dressed, going to the toilet, bathing, eating, getting in and out of bed, paying bills on time, remembering to take your medications, keeping up with housework.
Many people used to go to nursing homes for help like that. Other people had to move in with their families for the same reason.
Today attendant services can be provided in your home by someone who does that for a living, a personal attendant. The attendant answers to you and does things the way you want them done--and always in private.
We don't charge you for anything we do. Our services are paid for by the Medicaid program in Kansas.
TILRC stands for Topeka Independent Living Resource Center. We pronounce it Till-Rick. We're a non-profit group, mostly funded by the state and federal governments. The majority of folks who work here are people who have disabilities themselves. They advocate for and provide services to other people with disabilities.
We do lots of different things at TILRC, but one of the most important to us is to help people stay independent and still get the assistance they need.
We help people apply for Medicaid to pay for attendant services directed by the people who use them. We're proud to be able to say that TILRC worked with Kansas government to make this choice available to people in the first place.
Call your county S.R.S. office, or the Area Agency on Aging. They'll probably tell you what we already know: TILRC has a pretty good reputation for doing what we say we'll do.
Or call us directly. We'll be happy to meet with you, hear about the specifics of your situation, and answer you questions the best we can. Although what we do is fairly complicated, it's not technical.
We work with people all over the state and even beyond. If you're in the Topeka area, you're welcome to come into our offices. But we'd he happy to come to where you are and meet with you. Just say when.
Maybe you're living in a nursing home, or with a relative, and you'd like to have your own place the way you used to. Or maybe you'd like to move in with somebody you know. If you want any of those things, we can make it happen.
Some people we work for don't have a thing of their own left in the world, not a knife or a fork or kitchen table, not a set of sheets or a bed to put them on. Almost everybody has to start out on their own once in life, and some of us have had to do it twice. It takes a lot of figuring out, but we'll be working with you. You won't have to do it alone.
We have some storage lockers where we keep the furniture it takes to get a household started up again. People and companies donate things to us for just this reason. Most of the time, it's not brand new stuff. It's more the kind of thing people get when they first go out on their own. But once you pick it, it's yours. You own it.
We connect people with housing too, whether it's a private home or apartment or a government-subsidized building. We listen to what you'd like, then set things up so you can look over the alternatives and choose for yourself where you want to live.
You and your relatives are probably worried about very real stuff like what if it's late at night and you can't get into bed by yourself and your attendant doesn't show up?
Everybody needs backup in those situations. Attendant services can be worked out so that you always have backup.
What if the person working as your personal attendant is somebody that you just don't trust?
In the attendant services program we run, you're the boss. You choose the attendant who works for you. (It can be anyone you want--as long as you aren't married to them. That part is a Medicaid law.) You could hire a friend or a neighbor or even a relative to get paid for doing your attendant services.
If you don't know anyone for the job, you could run an ad or we can give you a list of people you might want to interview. But always you get to choose who works for you.
After you hire somebody, if they don't work out the way you hoped, we'll help you change. You are in charge.
Another what if: What if you're like that woman in the commercial and you fall but you can't get up? Everybody needs to be able to communicate in case of an emergency. Some people depend on portable phones. Other people use a gadget called Lifeline that calls a control center where people are on duty 24 hours a day to help. Other people work out signals with their neighbors. We can let you know the alternatives. You pick what works best for you.
With all respect, we think its fair for you to tell your family--or whoever else wants to make decisions for you--that this is your life and you make your own choices. They wouldn't let you run their lives, would they?
It's a dignity thing, and we understand a little something about that. The people of TILRC are people with disabilities. It always seems like once you have a disability, people just naturally start telling you want to do.
The people at TILRC believe that even if we need a little help, nobody but us can make our choices. Here's what we're getting at: You are the number one all-time best-respected expert on what you want and need.
It's the principle of the thing. We make sure people follow that simple principle when they deal with us. You might want to do the same.
Whether you need grab bars by the toilet or a ramp up to your door or a chair in your shower or a wider door to your bedroom, we can help get it in place for you. TILRC people are people with disabilities who work on accessibility issues all the time.
This is the part that's kind of technical: People who are hard of hearing can get a light that flashes when the doorbell rings. People sometimes need computers they can use to talk out loud. We're pretty familiar with lots of those kinds of things. Sometimes we can help people get wheelchairs and walkers and automatic-opening doors. We help people get tape recorders and talking books. When people need help breathing, we help them get portable respirators and backup generators.
We know about Hoyer lifts and ostomy bags and dialysis and orthopedic braces and none of it is any big deal to us. It's normal to us because we deal with it every day of the week.
Whether you need what they call "assistive devices" or "home modifications" or both, we probably know what program will help pay for it so that independence works out for you.
If you're living in a nursing home now, your Social Security check goes to the nursing home and you get about $30 of it to spend every month. When you live on your own, you get to keep the whole check. The minimum Social Security check is about $480.
Granted, that's not a lot of money. But we know people who are living real well out in the community on that little bit. We will help you set up a life in the community that you can afford.
Thanks to what computers can do these days, you can get your bills paid directly out of your account without writing checks. We can help you set that up. We can also set up direct deposit of your social security check so you don't have to stand in line at the bank every month.
Nothing you tell the TILRC person who works with you is anybody else's business. That's confidentiality. It's the law and we guarantee we will abide by it.
We don't write reports about you or assess you or chart your progress or talk about you to anybody else without your permission. We don't do anything about you without you.
It takes a lot of paperwork, dealing with government agencies the way we do to get things that people need. So yes, we'll have a file with all your paperwork in it. But nobody gets into that file without your permission. And nothing gets put into your file that you don't know about.
There may be things you want us to talk about with your doctor or your son or your landlady. If you ever do have a situation like that, we have a paper you can sign where you give us permission to talk to just that one person about that just one thing just that one time. We're very strict about not even talking to each other about you without your permission.
We promise this because we're the same way ourselves: what's private is private and it stays that way. Period.
If you truly want to live on your own, we can make that happen. You don't have to do it alone. And, like anybody else on earth, you have the right to change your mind about what you want.
Sometimes people stay in touch with us for a long time after we get them set up. Sometimes people say goodbye on the day they get where they're going and they don't call again until something new happens.
Any way you do it is fine with us. We're here and we'll be here if you want or need us again. What we won't do is come poking our nose into your life. That's a promise.
Almost always, friends and families try to do what is best for a person they love. Attendant services are, for most people, a new idea that maybe sounds a little risky.
We want you to know that people all over the United States have been using attendant services for many years now.
Since we meet new families all the time, we get to hear lots of questions. On the next few pages you'll see some of them and read some of the general answers we give.
Here's something we hear from families all the time:
The hardest thing I ever had to do was put my mother in a nursing home.
For a long time, people were faced with these horrible choices. Either they give up their job and their family life to take care of a relative or else put a person they loved in a nursing home.
Today, thanks to the government of our state, Kansans who are or will be eligible for Medicaid and who need some everyday assistance to survive can get that assistance in their own homes.
If people still want to go to nursing homes, that's fine. If people want to move in with their families and their families want to be the ones to help with everyday stuff, that's fine too. But now there's this other choice. It's called attendant services.
What attendant services amount to is getting most of the assistance a person would get if he or she lived in a nursing home. Attendant services can include things like assistance with getting in and out of bed, with bathing and toileting, with shopping and making meals, with eating, with paying bills on time and taking medications and keeping up with housework, and sometimes also with having a nurse take vital signs and set up the pills to take during a week.
Who pays for all this?
Kansas Medicaid pays attendants to do their work. In almost all cases, the person they do the work for is the boss. Being the boss means setting up the schedule, saying how the work is done, and hiring the person who does it. If your mother can't or doesn't want to do all that, she can do just a part of it and a home health agency will take up the slack.
But my dad already lives in a nursing home.
We can help him get set up, get going, and keep going in a place of his own again. This probably sounds too good to be true, or too expensive. But it's happening for more and more Kansans every year. That's the heart of what we do for a living, and it doesn't cost them or their families a dime.
We want to spread the word about these new services. That's why we made this booklet.
What qualifies you to do this work?
We're the Topeka Independent Living Resource Center (TILRC for short, pronounced Till-Rick). We're a non-profit agency and we've been in business since 1980. We are people with disabilities who provide advocacy and services for people with disabilities.
Our job with the new Kansas Medicaid attendant services program is to get attendant services set up and do whatever else a person wants and needs to have happen so they can live independently.
If the person is not yet in a nursing home, our job is to get them the services they need to help them stay independent. If they're already in a nursing home, we help them get established in the community again.
Kansas Medicaid pays us to do this for you, so it's a free service to you or your relative. Of course there's a catch: For folks with a higher income or savings, the federal government and the state of Kansas limit the amount of money a person can have and still get attendant services through Medicaid.
They require that people who have too much money to be Medicaid-eligible--but still need what Medicaid pays for, like attendant services--do a thing called a "spend-down" or "client obligation." Depending on your personal finances, that can be a little or a lot.
The state actually gets the money from that transaction, but they make us collect it for them. We'll tell you all the details and limitations in plain language any time you want to hear about it.
What we'd rather talk about here is closer to our hearts: how we do our job. See, it's not like we have some special formula or any kind of a one-size-fits-all service. We do whatever it takes to get the job done, from big things like attendant services and housing and home modifications to the little last-minute work to make everything come together at the same time.
There's nothing canned or processed about what we do. It would never fit on a form. We tailor what we do so it's what the person wants and needs to live the life he or she wants to live.
It's not simple. In fact, what we do can get pretty complicated--complicated but not technical. We try to explain it so that the people we're doing it for understand it every step of the way.
We can do just a little for somebody or a whole lot. That's up to the person who gets the services.
The rest of this brochure is written for that person. We hope you'll start from the front and read it through to get an idea of what we do and how we do it.
But my father can't do anything for himself.
One time we helped a man live in the community when everyone said it was hopeless. He had been in coma for pretty much all the years since he got hit by a car, and this man was probably dying by the time we met him and his family.
His family wanted to see that he was treated right and kept comfortable the way anybody should be. We helped get the man moved into a small apartment of his own, near his family so they could come and look in on him whenever they wanted to. But this way they didn't have to give up earning a living and taking care of their kids to take care of him.
We got that man set up with attendant services so the family could be sure that he got his food and his personal needs taken care of. That's where he lived and how he lived until the day he died.
We figure that if we can put together services for someone who really can't do anything for himself at all, we can probably do it for your relative too.
In a situation like that, the person who gets the services isn't in charge of them. Someone in the family takes that role, to make sure things work out right. In all the others ways, it's the same deal.
We'd be happy to work with you and your friend or relative. Just give us a call. We'll come out and meet with you.
| This brochure available from Topeka Independent Living Resource Center, 501 S.W. Jackson, Topeka Kansas 66603, Tel: 800-443-2207, E-mail: tilrc2@tilrc.org, Web site: http://www.tilrc.org |
Published by the Institute on Community Integration,
College of Education and Human Development, University of Minnesota
Volume
12, Number 4, Winter 1999/2000
Full Journal "From the Editors" and the first paragraph of each article are included below. The "Resources for Further Information" is also included in full.
The topic of this Impact returns to the topic of the first issue published 12 years ago. Although that one focused on what was then called "case management", we noted that terms like "service coordination" and "service integration" were becoming increasingly popular as descriptors of "the complex processes involved in case management."
Today, numerous labels are applied to the direct assistance provided people with developmental disabilities and their families, assistance intended to support them in understanding their full range of service and support options; making decisions that support their values, goals, and needs; and more directly controlling their own lives. In these pages, the authors use a variety of terms (e.g., case manager, service coordinator, support broker) to describe the role of those who are supporting persons with developmental disabilities to live the lives they choose. This variation in language reflects our evolving understanding of support, as well as our diverse service systems. Whatever the label, the important message for readers of this issue is that those who fill that role are a vital element of systems committed to supporting inclusion and self-determination.
I'm Not a Case and I Don't Want
to Be Managed!"--Supporting Self-Determination
Charles Moseley
(INTRO ONLY)
People with disabilities historically have had to rely on case managers to assist in planning and coordinating services. The term case manager retains the historical implications of the medical model and its depersonalization of individuals -- thinking of them as occurrences of diseases or conditions (i.e. "cases"). Today, the philosophy and practices associated with self-determination and those of case management are colliding to create and define new roles and responsibilities that are sometimes referred to as support or service coordinators, individual brokers, and other related terms.
From Management to Support: No
More "Business as Usual"
Robin Cooper
(INTRO ONLY)
One of the very best aspects of the field of developmental disabilities is that we reinvent ourselves every few years in response to new knowledge and changing perspectives. How we coordinate services reflects these shifts and changes.
Support Brokers Are in Our
Future
John Agosta
(INTRO ONLY)
The changes that are emerging in systems of support for people with developmental disabilities are part of an evolutionary process that began decades ago. Over this time, the inhumane conditions associated with institutions were exposed; community residential, day and family supports were created; and federal and state legislation supporting the civil rights of people with disabilities was passed. Along the way, ideals like normalization, inclusion, and participation were used to criticize prevailing practices and inform further change. It is as if the closer we think we are to the realization of these ideals, the more they demand of our skills and creativity.
Thinking About Support Broker
Roles
Michael W. Smull
(INTRO ONLY)
As service systems increasingly embrace the principles and practices of self-determination and individual funding, people are looking at the roles of those who have been traditionally known as case managers or service coordinators. The expectations that many had of service coordinators in the late '70s and early '80s have been buried under increasing numbers of people to support and endless paper to complete. As we change from service coordinators to support brokers (or whatever new label is adopted), we have the danger of just changing the labels without changing what happens. Unless the underlying structures are changed, including reducing the volume of paper and the numbers of people each support broker works with, the changes in roles and expectations needed to achieve self-determination are doomed. Real change needs to begin with an understanding of the desired outcomes and then move to developing the structures to support it. We need to begin by asking what do support brokers need to know and do?
Training Future Case Managers:
Moving to a Support Approach
Deborah M. Spitalnik
(INTRO ONLY)
Case management, as a way of helping people more thoroughly benefit from services, began in the anti-poverty programs of the 1960s, and then moved into the rehabilitation field. It was embraced in developmental disabilities services in the mid to late 1970s as community integration became more popular, as people were less often placed in settings where a single agency was responsible for all aspects of their lives, and as a functional approach to defining developmental disabilities became more widespread. The federal Developmental Disabilities Assistance and Bill of Rights Act of 1978 established the policy rationale for case management by including, as part of the criteria for a developmental disability, that it "Reflects the person's need for a combination and sequence of special interdisciplinary or generic care, treatment or other services which are life-long or of extended duration and...are individually planned and coordinated."
Self-Determination Changes
Everything
Ken Stoffel
(INTRO ONLY)
Winnebago County, Wisconsin, set a goal three years ago to transition from a county that provided traditional developmental disabilities services, to one that incorporates the values, principles, and practices of self-determination. With the help of the Robert Wood Johnson Foundation and the State Bureau of Developmental Disabilities Services, we put together a plan that we, at the time, hoped would be fully implemented by the year 2000.
A System in Transition: Dane
County Moves From Case Managers to Support Brokers
Wendy Stockstad
Hecht
(INTRO ONLY)
Dane County, Wisconsin, has long evaluated the way it delivers case management to its citizens with developmental disabilities. While in the past some people received this service from the county case management unit, most had a case manager who was employed by the agency providing their residential or vocational support. Many, in and out of the system, saw the conflict inherent in this way of delivering support in planning, coordination, and advocacy. People with disabilities did not have a choice about their case manager or the work they wanted the case manager to perform with them and on their behalf.
By Freedom Buoyed: Systems Change
in Vermont
Theresa A.M. Wood
(INTRO ONLY)
The dream of freedom buoys the spirits of people around the world as, piece by piece, they dismantle the physical, economic, political, and social walls of oppression and exclusion. This dream of freedom is just beginning to spark in people with developmental disabilities, and it is a spark that individuals concerned with the human and civil rights of all people must fan.
Support Coordination in Florida:
An Evolving Story
Denise Arnold
(INTRO ONLY)
Just as the individuals we serve continue to change and improve their quality of life, the support coordination system in Florida continues to change and improve, evolving into a more person-centered system. It started approximately seven years ago, when Florida first embarked on the concept of independent support coordination. At that time, a traditional case management system existed that was professionally driven and focused on 'fixing" the person rather than building upon the person's talents, abilities, and personal preferences. in 1992, Florida's Medicaid Home and Community-Based Services waiver (HCBS waiver) programs for persons with developmental disabilities was approved for expansion. The person-centered approach to service delivery that was its goal began with the initiation of the independent support coordination design. This article will describe the original design of the system and how the system has evolved.
There's No Place Like Home:
Supporting People in Communities in Kansas
Sharon L. Johnson and
Roxie Namey
(INTRO ONLY)
The Kansas Division of Health Care Policy is committed to providing individuals with developmental disabilities the opportunity to plan person-centered supports, choose among a variety of services and supports, and enjoy full community participation. Consistent with these themes, tremendous changes are occurring related to how people with developmental disabilities receive supports in Kansas. These changes, referred to as the Self-Determination Option, promise to provide the supports that are truly needed and wanted, instead of simply offering what's available.
Plotting a Course to Better
Service: Self-Determination in Nebraska
Carla Lasley
(INTRO ONLY)
With the next century on the horizon, Nebraska's developmental disabilities system continues to plot its course to better serve the state's citizens. Our system has come a long way in the past decade to move toward a system in which self-determination is an inherent part of all services and all efforts to support people with developmental disabilities.
Consumer Empowerment Through
Choice: Indiana's Privatized Case Management
Kathyleen E. Thompkins
and Holly Lambert Fuller
(INTRO ONLY)
Until 1990, case management in Indiana was provided only by governments agencies. In that year, Indiana privatized case management within its Medicaid Home and Community-Based Services (HCBS) waiver program for individuals with developmental disabilities. The motivation for privatization was two-fold. First, downsizing the bureaucracy became popular across the country at that time, beginning at the federal level and moving down to local government. Federal, state, and local government began using more and more private contractors in all areas, from pouring concrete to writing sophisticated computer software. A second more specific motivation for privatizing case management was to reduce the caseloads of state case managers, and support a focus on quality rather than quantity in their work.
Resources for Further Information
The following may be of interest to readers of this issue of Impact. For cost and ordering information on materials, please contact their distributor.
Case Management/Support Coordination
Report of the Services Coordination Implementation Work Team, by the Nebraska Partnership for Health and Human Services. In 1991, the Nebraska Developmental Disabilities Division convened system stakeholders to examine alternatives for comprehensively redesigning the state's case management system. This report describes the full implementation process of Nebraska's redesigned service coordination system, a process that was completed in 1997. The system is state-operated and financed under the TCM option. Available from the office of Carla Lastey, Health and Human Services, Developmental Disabilities System, Lincoln, 402/479-5110.
OMRDD Plan for Service Coordination/Case Management, by the New York State Office of Mental Retardation and Developmental Disabilities. Beginning in 1995, the office embarked on a comprehensive redesign of its case management system to ensure independence of service coordination from direct services, and strengthen consumer empowerment within their services system (among other objectives). This publication is a copy of their plan. Available from the office of Thomas Maul, Commissioner, NYSOMRDD, Albany, 518/473-1997.
Connecticut Department of Mental Retardation Case Management and Quality Assurance Study, by M. Smull and J. Hollahan. In 1996, the Connecticut Department of Mental Retardation contracted with the University of Maryland to conduct a comprehensive review of its case management and quality assurance system. This report contains an analysis of the present system's strengths and weaknesses, and offers suggestions for improving the system, including a vision for case management services and training recommendations. Available from the office of Peter O'Meara, Commissioner, Department of Mental Retardation, Hartford, 860/418-6000.
Case Management for Hawaii's Citizens with Developmental Disabilities: Putting the Pieces Together, by R. Cooper and C. Lasley. In 1996, Hawaii began transitioning to a system of independent state-operated case management, and making the system more attentive to families and consumers. This report, commissioned by the Hawaii Developmental Disabilities Division, contains an analysis of the system and recommendations for improvement. Available from the office of Anita Yuskauskas, Chief, Developmental Disabilities Division, Department of Health, Honolulu, 808/586-5840.
Living Everyday Lives: Support Coordination Training, by the Florida Developmental Services Office and Florida Developmental Disabilities Planning Council. This training manual and other training resources produced by the office provide information about training materials on person-centered planning and support coordination. For more information contact Denise Arnold, Developmental Services Program Office, Florida Department of Children and Families, Tallahassee, 850/ 488-4257.
How to Get People to Work Together, by D. West. Service coordination requires that many people work together, communicate effectively, and resolve conflict. This videotape and accompanying materials are designed for training members of interdisciplinary teams involved in case management and service coordination, and focuses on techniques of effective communication and conflict resolution. Available from Bethesda Lutheran Homes, Watertown, WI, 800/369-4636.
Impact. Feature Issue on Supporting Parents Who Have Cognitive Limitations. Communities and agencies actively engaged in supporting persons with cognitive limitations to be successful in raising their children are profiled in this issue. Available from the Institute on Community Integration, University of Minnesota, 612/624-4512.
Reinventing Quality: The 1998 Sourcebook of Innovative Programs for the Quality Assurance and Quality Improvement of Community Services (http://ici2.coled.umn.edu/rtc), by B. Polister, et al. Produced by the Research and Training Center on Community Living at the University of Minnesota, this sourcebook describes selected programs offering innovative or comprehensive approaches to quality in services for persons with developmental disabilities.
Guide to High Quality Direct Service Personnel Training Resources (www.ici2.coled.umn.edu/rtc/dsptr), by A. Hewitt et al. The topical index in this guide to materials for use in training direct service personnel identifies 20 resources under the heading Case Management/Service Coordination. The guidebook was produced by the Research and Training Center on Community Living, and is also available in print from the Publications Office, Institute on Community Integration, University of Minnesota, 612/624-4512.
Self-Determination/Person-Centered Planning
National Program Office on Self-Determination Website (www. self-determination.org). A discussion group on independent brokering and support coordination, along with other discussion groups, and publications and resources on self-determination, are included in this Website. It's a Robert Wood Johnson Foundation program.
Responsive Systems Associates (http://soeweb.syr.edu/thechp/rsapub.htm). Responsive Systems Associates (John O'Brien and Connie Lyle O'Brien) produces a variety of materials on self-determination, person-centered planning, innovative services, and community building. Many are available on this Website.
Essential Lifestyle Planning (http://www.allenshea.com). The section of the Website titled Michael Smull and Friends contains information on various aspects of Essential Lifestyle Planning, a simple approach to individual services planning.
PATH Workbook and PATH Training Video, by Inclusion Press and Parashoot Productions. PATH is an eight-step planning tool and problem-solving approach that involves dreaming for the future and ending with an action plan for the present. The workbook is an essential tool for anyone thinking about or using PATH in person-centered planning with individuals, families, or organizations. The training video illustrates the steps of the PATH process with Joe, who has cerebral palsy and is moving from a small institution to his own apartment. Available from Inclusion Press, Toronto, 416/658-5363 or http://inclusion.com.
Impact: Feature Issue on Person-Centered Planning with Youth and Adults Who Have Developmental Disabilities. The values, attitudes, and practices associated with person-centered planning at its best are described in this Impact by a number of leaders in its development and implementation. Available. from the Institute on Community Integration, University of Minnesota, 612/624-4512.
| This publication can be purchased from Institute on Community Integration, University of Minnesota, 109 Pattee Hall, 150 Pillsbury Drive S.E., Minneapolis, MN 55455, Tel: 612-624-4512, E-mail: publications@icimail.coled.umn.edu, Web site: http://ici.umn.edu/products/newsletters.html |
Independence Care System
Independence Care System is a nonprofit organization with one primary goal: to help Medicaid-eligible adults (over 21 years old) with significant disabilities or chronic illnesses live in their homes and communities.* Every effort will be made to keep members in their homes as long as possible.
We understand how difficult it can be for people with disabilities to find the medical expertise and specific long term care services needed to live independently. ICS was created to make this process easier, more focused on individual needs, and more satisfying to the consumer.
Independence Care System recognizes the need for both comprehensive and individualized services, and is prepared to provide them. ICS effectively builds on New York City's existing system of health care and social service providers in developing a specialized program for each of our members.
The most important service Independence Care System provides is the comprehensive and coordinated management of the health and social services you need. Our commitment to you is to develop a program of services that meet your individual health care needs.
We will also work with you to manage services not directly or currently covered in the ICS program--such as physician and hospital care. We can also help you arrange these services it you do not currently have them in place. If you are also a Medicare recipient, your Medicare coverage will not be affected by your membership in ICS.
The following list represents our basic services. If you do not see something on this list that you need, please let us know when we meet with you.
If you are now receiving services from a person or program not included in our network of services, we can talk with you about bringing your current provider into our system, or discuss with you the best way for you to make the transition from your current provider to someone in the ICS network.
To receive a list of our current providers, or to find out if one of your providers is already part of our network, contact ICS at 212-584-2500 during regular business hours (9 am to 5 pm).
Independence Care System understands that your needs may change. We can work with you in adjusting services to maximize your independence and comfort.
For as long as you remain a member of ICS, we'll be there for you--whether you are at home, in a hospital, or in a long term care facility. We will spend time with you, listen and learn from you, and work with you to get the services and resources you need.
If you are interested in learning more about Independence Care System, and how our services might meet your needs for independence, please call us at 212-584-2500 between 9:00 am and 5:00 pm.
When you call, a member of our intake team will schedule a meeting with you--in your home or somewhere convenient for you--to talk about how the ICS program can help you.
If you are eligible and decide to enroll, your membership in ICS will become effective within two to seven weeks.
If you would like independent information about ICS...and to learn more about the health and long term care services available to people with disabilities, you are encouraged to contact the following organizations:
* ICS is a managed long term care plan. Membership is voluntary, and requires Medicaid eligibility and certification that a nursing home level of care is needed. We serve the boroughs of Bronx and Manhattan.
| This brochure available from Independence Care System, 257 Park Avenue South, Second Floor, New York, NY 10010-7304, Tel: 212-584-2500, Fax: 212-584-2555, E-mail: info@icsny.org, Web site: www.icsny.org |
Case Statement
March 2001
Independence Care System (ICS) is a nonprofit organization committed to assisting people with disabilities to live independently. We use the vehicle of a managed long-term care program to coordinate a comprehensive range of services in an integrated, flexible manner. ICS began operation in April 2000 and has approximately 150 members as of March 2001. We intend to enroll approximately 300 people a year for the next three years.
ICS serves Medicaid-eligible individuals over 21 years of age with significant physical disability or chronic illness who reside in New York City. The target population primarily consists of younger adults with disabilities due to severe trauma and/or injury and degenerative neurological and muscular diseases--e.g., spinal cord injury, multiple sclerosis, cerebral palsy and muscular dystrophy.
Physically disabled adults living in the community generally live within severe constraints in terms of available health and social services. They are often viewed as "problem" consumers in the fee-for-service health care system. Most health care providers--from physicians to home care aides--have little training or knowledge about their disabilities. Adults with disabilities often require more time and have more unusual problems than the typical patient or consumer. The implications in daily life of a fragmented system mean that the medical specialist too often cannot obtain consistent rehabilitation services or infusion therapy in the home, or the home health care nurses and aides have little information from the consumer's physician to guide their work.
Further, the mobility needs of severely disabled adults are virtually ignored in this system. Almost every disabled consumer finds it impossible to secure a transportation service that consistently arrives on a timely basis for medical appointments. The consumer whose wheelchair needs maintenance or minor repairs often does not know where to get reliable service or who will pay for it. Yet, access to health care for many people with severe disabilities depends on both an adequate wheelchair and regular transportation.
ICS was established to address these issues. Consumers become members who plan and manage their own health care and social supports in conjunction with care coordinators and service providers. The focus is on coordination of services, identifying gaps in needed services and identifying preferences for services and how they are provided.
ICS was also established to further develop and broaden the impact of the "good jobs/good care" model of paraprofessional home care developed by Cooperative Home Care Associates (CHCA) one of its co-sponsors. ICS will provide a unique opportunity for CHCA to grow to a 1,000-person agency within the next five years.
Independence Care System, Inc. (ICS) is a 501(c)(3) nonprofit subsidiary of the Paraprofessional Healthcare Institute (PHI). The Institute is a ten-year-old independent 501(c)(3) nonprofit organization affiliated with Cooperative Home Care Associates (CHCA), a sixteen-year-old worker-owned home health care agency employing approximately 600 African-American and Latina women as home care aides in the Bronx and Harlem. Approximately 70 percent of CHCA's workforce was dependent on public assistance before being trained and employed by CHCA; the majority are single mothers of young children.
Cooperative Home Care Associates is widely recognized as a model for providing both high-quality paraprofessional home care jobs and high-quality services to its elderly and disabled clients. CHCA received the 1992 "Business Enterprise Award" from the Business Enterprise Trust for social responsibility in business, the 1993 "Brookdale Award for Best Practice in Human Resources and Aging" from the Brookdale Center on Aging and the American Society on Aging, and the "1997 Corporate Conscience Award" for employee relations from The Council on Economic Priorities.
In 1991, CHCA sponsored the creation of the Paraprofessional Healthcare Institute (PHI), a 501(c)(3) nonprofit organization to develop new programs and conduct policy analysis consistent with CHCA's "Quality Jobs/Quality Care" mission. PHI was commissioned by the United Hospital Fund in 1994 to articulate this approach in a monograph, "Better Jobs, Better Care: Improving the Health Care Workforce."
PHI and CHCA are now sponsoring the creation of ICS to develop a coordinated system of care for adults with disabilities in New York City. ICS and CHCA combined have the potential for becoming major actors in New York City's long-term care industry. ICS will be highly visible as the payor and coordinator of care for a physically disabled and chronically ill population throughout four of the five boroughs of New York City. CHCA will be a major, integral component of its system of care.
The goal of Independence Care System is to enable people with disabilities of all ages to remain at home, or in the least restrictive setting possible, by coordinating the full range of primary care, acute care and home and community-based services in a comprehensive, flexible manner.
We are the first managed long-term care program in New York State to focus on the needs of the physically disabled. We are also unique in our dual focus on: 1) emphasizing the full participation of disabled consumers in the care planning and management of their own health and social supports; and 2) developing a tailored system of medical and social care for each member, based on the member's preferences and their choice of provider--from physicians to home care aides. This focus, and the values embedded in it, is particularly important to consumers and disability rights advocates.
The development of ICS is especially significant in the context of the Supreme Court's decision in 1999 in Olmstead v. L.C. This decision ruled that the Americans with Disabilities Act prohibits the unnecessary/inappropriate institutionalization of individuals with disabilities in long-term medical facilities. As a result of this decision, the Federal Department of Health and Human Services has recently given guidance to the state explaining new regulations extending Medicaid coverage to more people with disabilities and on how they can apply for grants to improve their long-term care systems and to assist individuals transitioning from institutional to community-based care settings.
Many states, like New York, see managed long-term care organizations as the most desirable type of intermediary organization to be accountable for providing community-based care using Medicaid funds. Yet, state are also confronted with the dilemma that the existing models for managed long-term care, like the PACE program, are designed for an elderly population and not the physically disabled.
There is a clear need for a new model, like ICS, which becomes the mechanism for accountability for: addressing the medical and social needs of the disabled by building on the strengths of the current health and social service system and strengthening existing or developing new services where necessary; respecting and embracing the core values and beliefs of the disabled rights movement; containing overall costs over time; and operating at sufficient scale to service a substantial portion of adults with physical disabilities.
ICS has been developing such a model and we are seeking to be at the forefront of efforts nationally to serve people with disabilities appropriately in the community.
ICS serves Medicaid recipients with significant physical disability or chronic illness who are eligible for placement in a nursing home level of care. This population primarily consists of younger adults with significant disabilities typically due to severe trauma and/or injury or degenerative neurological and muscular diseases. There are approximately 18,000 eligible people in New York City.
People with disabilities want to remain at home for as long as possible, to be supported by family, friends and familiar service providers. Severely disabled individuals are exclusively neither acutely nor chronically ill. Instead, their conditions tend to be long-term, often degenerative, with episodic flare-ups that may have an uncertain prognosis. Their concern is much less with "curing" their illness than with managing their illness with maximum dignity and comfort. As a result, the clients require care that recognizes and responds to their very specific needs--care that is delivered in a coordinated, "seamless" manner and that blends both medical and social support services. They also require continuity of care so that both client and family can be supported emotionally and psychologically--not just medically--over extended periods of time.
Adults with significant physical disabilities are often viewed as "problem consumers" in the fee-for-service health care system. Most health care providers--from physicians to home care aides--have little training or knowledge about their disabilities. Their conditions are rarely clinically monitored because they typically receive home care services through the largely custodial personal care/home attendant programs and they often do not have primary care physicians if they are Medicaid beneficiaries.
Instead of primary care providers they tend to rely on the specialty clinics of academic medical centers. These clinics are staffed by medical residents who rotate every six months. As a result, there is no continuity of care or building of knowledge about the consumer/patient over time and often inappropriate referrals are made to other clinicians in the process.
Virtually unattended, adults with disabilities are more vulnerable to acute health problems such as decubitus ulcers, fractured bones, contractures, urinary tract infections, respiratory tract infections and deep vein thrombosis. These problems become serious quickly, often resulting in unscheduled hospitalizations and secondary disabilities and limitations.
Paraprofessional home care is widely regarded by many disabled individuals as their "lifeline" or primary support. Home care aides are the immediate link between client/family care givers and professional service providers, particularly in terms of daily support for self-care and prevention programs, early detection of problems and changes in physical condition. Yet, paraprofessionals are rarely respected, trained or communicated with in a way that recognizes their value.
Further, the mobility needs of disabled adults are virtually ignored in this system. Customized fittings for wheelchairs, for example, are typically done by the durable medical equipment provider in a hospital setting without ever visiting the consumer's home to make sure the chair fits through doors, elevators and hallways. Motorized wheelchairs require routine maintenance and minor repairs but it is extremely difficult to find reliable service providers and to get Medicaid or Medicare to pay for it.
Consumers are typically unable to identify a transportation company which consistently arrives on a timely basis, is appropriately equipped with safety equipment for a variety of wheelchairs and has experienced, sensitive drivers. A single trip will often take an entire day to complete. Yet, access to health and social services for many people with significant disabilities depends on both an adequate wheelchair and regular transportation.
Finally, people with disabilities have limited opportunities for participation in community life--e.g., employment, recreation and sports activities. This is, in part, due to lack of transportation and, in part, a lack of suitable options.
Independence Care System began operation in April, 2000 and has approximately 150 members as of March, 2001. We intend to enroll approximately 300 people a year for the next three years.
ICS serves Medicaid--eligible individuals over 21 years of age with significant physical disability or chronic illness who reside in the Bronx and Manhattan in New York City. We will expand to Brooklyn and Queens in New York City over the next three years. The target population primarily consists of younger adults with disabilities due to severe trauma and/or injury and degenerative neurological and muscular disease--e.g., spinal cord injury, multiple sclerosis, cerebral palsy and muscular dystrophy.
Independence Care's program has five key elements:
Consumer Participation
We are building a new framework for balancing provider and consumer perspectives that emphasizes the full participation of the consumer in care planning and the management of their own health and social supports. The emphasis is on building on their individual strengths and what they can do for themselves in conjunction with identifying their preferences for various services and how they are provided.
Interdisciplinary Care Management
The member is part of an interdisciplinary care management team led by a nurse and a social worker. The focus is on coordination of services and identifying gaps in needed services. We must coordinate care over time, with multiple providers, and across primary, acute and long-term care settings.
Comprehensive Services
We offer a comprehensive range of services and supports that consumer's value. This includes: consumer-directed paraprofessional care; wheelchair repair and maintenance; transportation to medical and social activities; and support groups. We must not only make these services widely available but also allow maximum flexibility in their use.
Focus on Mobility Needs
Our focus on the member's mobility needs ranges from accessibility surveys of site-based providers to providing wheelchair repair and maintenance services. As a large purchaser of transportation services we will require timely and responsive services. We will also provide specialized support for fitting motorized wheelchairs.
Build Knowledge and Skills
We must continuously build knowledge and skills among our providers, our staff and our members about the disabling conditions they are working with and how to effectively work with each other. Training for providers and for consumers must be an ongoing process.
ICS coordinates a wide range of primary, acute and long-term health care providers. The service network builds on the City's existing system of services for the physically disabled. The challenge is to develop a core group of key providers over time, while at the same time, supporting a very broad network. Consumer choice is embedded in ICS' philosophy of supporting consumer-members as the primary managers of their own care. Choices extend to all providers, especially paraprofessionals, and not just to physicians.
We currently offer a benefit plan that includes: care management, home health care, personal care, adult day health care, durable medical equipment, transportation, prescription and non-prescription drugs, podiatry, dentistry, optometry, audiology, home delivered meals, social day care, respiratory therapy, social and environmental support, rehabilitation services and nursing home care. Inpatient and outpatient hospital services, physician services and several other areas are currently excluded from the capitation arrangement; however, all care is coordinated by ICS. Providers bill Medicare directly for Medicare-covered services.
We pay particular attention to five areas: physician services; paraprofessional home care; durable medical equipment; transportation; and fostering opportunities for participation in community life.
ICS is continuously seeking to identify and develop relationships with a sufficient number of physicians who are in accessible settings, knowledgeable about the medical needs and expectations of ICS' members, sensitive in their interactions, and committed to a collaborative, interdisciplinary approach--and will see people, by appointment, at Medicaid rates. We expect these physicians to be able to obtain consultation from other physicians/specialists as required without referring ICS members to clinics. We also will establish simple administrative procedures for transferring useful information, ongoing communication and billing for payment.
ICS is also working to develop a more highly skilled paraprofessional workforce as a critical member of the health care team, not as an appendage. We need home care aides who are: skilled, reliable workers; able to accommodate a wide range of needs from going to school or work to dependence on a ventilator; able to report changes in conditions/compliance with prescribed regimens especially when a person can not see himself or herself; and able to establish good relationships with nurses and social workers who are part of the care team. Members will also choose the organizational form of paraprofessional care they want--i.e., provided by an agency such as Cooperative Home Care Associates, or consumer-directed, such as Concepts of Independence which acts as a fiscal intermediary for personal assistants hired and supervised by consumers.
ICS provides specialized support for fitting motorized wheelchairs. We have also initiated our own wheelchair repair and maintenance service. Initially, we are focusing on using our purchasing power to obtain adequate transportation services but expect that we will need to provide some portion of our transportation needs directly by the third year of operations.
ICS is also working to develop more options for participation in community life for its members. The current options rage from advocacy activities regarding public transportation, trips to recreation or entertainment or sports events, and participation in athletic teams. We are also seeking to arrange for our members to purchase personal computers and be connected to our Website and with each other.
Another potential mechanism for social participation is to create community social centers. Such centers could be informal, safe places where people with disabilities could spend time as they wish. The centers could have some or all of the following functions; café; meeting space; resource library access to computers; educational classes; ICS member training; and support groups.
Finally, ICS is committed to building knowledge and skills among members, staff and providers about the disabling conditions they are dealing with and how to work with each other. We will establish a training institute that will offer a variety of courses or sessions in different community-based locations--e.g., independent living centers, churches, settlement houses. ICS members, staff and providers will serve as instructors.
The ultimate success of the program will depend in large part upon our ability to establish a sense of community among our caregivers and our client members. With this sense of community will come the trust, loyalty and mutual support that provides the basis for long-term organizational development. This is the philosophy that has driven the development of Cooperative Home Care Associates and PHI for the last 16 years.
The ICS governance structure reflects the broad-based nature of our program. ICS is sponsored jointly by Cooperative Home care Associates (CHCA), a 600-person worker owned home care agency, and the Paraprofessional Healthcare Institute (PHI), a nonprofit affiliate of CHCA. The Presidents of CHCA and PHI represent ICS' co-sponsors. There are two consumer advocates on the Board, which currently consists of the Director of Health Policy Access for Gay Men's Health Crisis and the director of an independent living center. There are three At-Large or public positions which currently consists of a local general manager of Physicians Health Services, a large health maintenance organization; the Vice President for Policy of the United Hospital Fund; and a representative of the NYC Investment Fund, a major financial supporter. The President of ICS is also a Board member.
A Consumer Council consisting of ICS members and representatives of advocacy organizations for people with disabilities has also been established. A Director of Advocacy/Ombudsperson, who is a full-time staff person and a recognized leader in the disabled community, helps facilitate and ensure that consumers have a real and effective voice in the organization.
The senior management team consists of the following:
| President Director of Operations Chief Financial Officer Director of Care Management Medical Director Director of Clinical Services Director of Advocacy Director of Community Outreach |
Rick Surpin Frances Sadler Jan Saglio Ann Wyatt Dr. Peter Connolly Eileen Hanley Marilyn Saviola Portia McCormack |
The team has extensive experience in: design and management of long-term care programs and specialized programs (including people with AIDS and hospice care); traditional and specialized managed care organizations; and business development and finance.
Planning support for ICS totaled approximately $1.5 million and was obtained through grants from the Altman Foundation, the Ford Foundation, the Robert Wood Johnson Foundation, the Charles Stewart Mott Foundation, New York Community Trust, The Pfizer Foundation, the United Hospital Fund and the Public Welfare Foundation.
Start-up financing to date has been obtained through a combination of $2.3 million in grants and $3.75 million in medium and long-term debt. Grants have been obtained from the following sources: the Ford Foundation; the F.B. Heron Foundation; the Charles Stewart Mott Foundation; the Fan Fox and Leslie R. Samuels Foundation; New York Community Trust; and an Anonymous Foundation; United Hospital Fund, and the California Wellness Foundation.
The medium and long-term debt has been obtained from the following sources:
| New York City Investment
Fund 5 year term loan |
$1.8 million |
|---|---|
| The Ford
Foundation 10 year program-related investment |
$1.2 million |
| Nonprofit Facilities
Fund 5 year loan for renovations |
$600,000 |
| National Cooperative
Bank 5 year term loan |
$150,000 |
The debt is used for working capital and for meeting the State's loss reserve requirements.
Independence Care System will succeed if we are able to build trusting relationships with our members and providers, foster collaborative working relationships which are truly interdisciplinary and enable real participation and choices for members in care planning and management. We must do this in the context of addressing the basic problems that people with physical disabilities face everyday. It is an organizational mission which is simultaneously daunting in its complexity and essential because there is no other organization that we know of that is prepared to undertake these challenges.
| This paper available from Independence Care System, 257 Park Avenue South, Second Floor, New York, NY 10010-7304, Tel: 212-584-2500, Fax: 212-584-2555, E-mail: info@icsny.org, Web site: www.icsny.org |
Arkansas Department of Human Services
December
2000
Arkansas is one of the first states in the nation to offer disabled and elderly Medicaid clients a cash allowance to purchase their own personal care services. Here's how it's being done...
In December 1998, Arkansas became one of the first states in the nation to fundamentally change the ways in which Americans may receive personal care services through Medicaid. The experimental program is called IndependentChoices, and it may be the key to returning personal freedom to millions of people in Arkansas and across the nation.
In most states, Medicaid is unable to give its clients who need personal care services choices regarding how, when, or by whom those services are delivered. But Arkansas (along with Florida and New Jersey) is pioneering a revolutionary alternative: giving a monthly cash allowance to 1,000 of its Medicaid enrollees who want to make their own decisions about their personal care needs.
The cash allowance does more than help people pay for needed services, it gives them back some freedom and independence. Many people are using the cash to hire family members or friends as their personal care assistants. Others are working with IndependentChoices counselors to identify more creative ways to spend their allowance. For example, a blind man used part of his to purchase a washing machine because he was fearful of going to the Laundromat on his own. And an elderly woman who can't cook for herself bought a microwave so she could easily heat already prepared foods.
Of course, IndependentChoices, which is part of the national Cash & Counseling Demonstration Program sponsored by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services, isn't for everyone. The traditional personal care system works well for many people because they are unable to -- or don't want to -- make decisions about their care. But many others want to make their own decisions -- or at least appoint someone else to do it for them -- and in Arkansas they now have that option.
The bottom line is choice -- Arkansas is giving freedom of choice back to people who never willingly gave it up.
Personal care services involve the basic tasks of daily living such as bathing, dressing, grooming, preparing meals, and housekeeping. This kind of daily assistance often is a requirement for people with disabilities, but also is sometimes necessary for older people, who may be physically unable to do things like cook or get in and out of the bathtub on their own.
Most states contract with home care agencies to deliver services to their Medicaid clients at home. The state pays the agency according to the amount of care each person needs, as determined by an assessment. The client may select a personal care agency, but often has no say in who cares for him or when that care is provided.
Most personal care agencies that contract with Medicaid are able to send aides to their clients' homes only during the workday, and only during the week. This means that their clients must receive care when it is available instead of when they actually need it. For many people who need help getting in and out of bed or getting their meals, this means getting up late in the day, having meals at odd times, going to bed before the sun goes down, and going without services on the weekends.
Even though personal care aides help their clients with intimate personal hygiene activities, they usually are strangers to their clients. And a client usually is unable to choose which of the agency's aides comes to her home.
Currently, Arkansas spends 20% of its Medicaid budget to help adults with chronic disabilities get the services they need at home, but many still go without sufficient help. Arkansas is very large but has few cities -- nearly half of its residents live in isolated, rural areas. This creates a difficult challenge for personal care agencies, whose employees must travel long distances between clients' homes. Agencies also are hindered by their inability to hire enough workers -- low unemployment rates have tightened the competition for minimum wage workers like personal care aides.
IndependentChoices is an opportunity to test a new way of helping people in their homes -- a way that may be more flexible, more accessible, and may not cost any more than traditional agency services. And in allowing participants to hire relatives or friends, the program eases the burden on overloaded personal care agencies, which must sometimes place those who contact them for immediate help on a waiting list for services.
2,000 participants will be enrolled in the demonstration program -- half are being randomly assigned to the "treatment' group, which receives the monthly cash allowance, and half to the "control" group, which continues to receive traditional personal care services from an agency.
Participants will be enrolled in the experimental program for a minimum of two years.
Participants must be 18 years of age or older, already enrolled in Medicaid, and require personal care services. A typical IndependentChoices participant is an elderly, white woman who lives alone in her rural home and has a monthly income of less than $500.
The state provides participants with a monthly cash allowance based on the number of hours of personal care that they require each week, as determined by a medical professional. The average monthly allowance is $350.
Counselors help participants develop a spending plan. These counselors check in with participants on a monthly basis, and are always available to them by phone.
Participants become employers when they hire a personal care aide. Bookkeepers are available to help participants with the paperwork required to pay an employee's wages and withhold taxes.
Counseling and bookkeeping services are provided to participants by a single agency. Depending on where they live, participants are assigned to one of the two agencies that contract with the state to provide these services.
Participants who can not or do not want to make the decisions regarding how to spend their allowance can rely on a representative decisionmaker -- such as a relative or friend -- to help.
The Health Care Financing Administration (HCFA) granted the Arkansas Department of Human Services a demonstration waiver to implement IndependentChoices. HCFA requires IndependentChoices to be "budget neutral," which means it can not cost any more to run the program than it would to have its participants enrolled In traditional services.
When Lillie Brannon was 16, she hitchhiked with her widowed father from her native state of Oklahoma to Arkansas, which has been her home ever since. That was more than 70 years ago. Today, Lillie is 88 and never leaves her home, except to go to the doctor or the hospital. The woman who, at one time or other in her life, worked as a cotton picker, a wood chopper, a peach grader, and a nanny, now can't get around on her own. She can't cook her own meals, can't bathe herself, or get herself into or out of bed. She spends her days in an easy chair in her living room and her nights in bed, assuming she has help moving from one to the other at the beginning and end of each day.
But don't be fooled by Lillie's need for assistance; she still knows how to take care of herself, even if she can't manage it physically. She is every bit as strong-willed and independent as the young girl who took to the road with her dad, which is why she still chooses to live alone in her own apartment. And it's also why she was one of the first people to enroll in IndependentChoices. She likes to tell people: "I've been in four nursing homes, and I've escaped every one of them."
Lillie uses her $662 monthly allowance from IndependentChoices to pay Barbara Ward, a former aide who's become "like a daughter," to visit her daily and help her with getting out of bed, bathing, dressing, preparing meals, and some housekeeping. "Barbara will come any time I call," says Lillie. Barbara averages about six hours a week working for Lillie, but she can only help out in the day time during the week, so Lillie is currently training another personal care aide to assist her around Barbara's schedule. Lillie also pays a family friend to do her grocery shopping once a week and plans to hire her 67-year-old son, David, to help her out a few times a week. And she uses part of her allowance to buy personal care items like facial tissue, bath tissue, and over-the-counter medications.
"I like being able to have a say in who comes here and cares for me," says Lillie. "It's important to get someone -- who's on the ball and can do the job."
When David and Elva Stoufer got married, they had eight grown children between them. When the youngest of those left home, the Stoufers decided to adopt a child "because life is just more fun with children." But they didn't stop at just one. They adopted three children, each of whom has a disability and must a wheelchair. Michael and Guillermo (or "Memo" as he is called) both have spina bifida, and Lisa was born without arms or legs.
Michael, Memo, and Lisa are all in their early 20s now and -- despite their need for daily personal care -- very independent. All three attend classes at a local junior college and are preparing for careers in the computer field. Michael and Memo play in a wheelchair basketball league. Michael is the funnyman among them ("I'd like to be a stand up comedian, but I can't stand up!"), Memo is quiet and gentle, and Lisa is the honor student, driven to succeed. She has turned her mouth into an asset that makes up for the deficiencies of her body -- she uses it to write, dial the telephone, operate her wheelchair and her computer, and sing. Her singing voice is so lovely that she was invited to perform "Unchained Melody" onstage with The Platters in Branson, Missouri.
"My kids have never asked why God did this to them," says their dad, David.
These are not people who want to live with Mom and Dad for the rest of their lives. But for now, that's what they're doing. AR three are participating in IndependentChoices and they've each hired their mom as their personal care aide. Elva and David have always been the ones to take care of the kids -- even though they both had full-time jobs. Elva worked in a hospital and David was a salesman. IndependentChoices has made it possible for Elva to stay at home with the kids as their full-time employee -- a fact that Michael can't help but tease her about. Every day, Elva helps her three adult children get out of bed, bathe, use the bathroom, and get dressed. She gets their meals for them when they're home and she helps them get to bed at night -- a time-consuming task that is becoming a source of conflict because three 20-something adults usually don't want to go to bed as early as their 60-something mother.
Scott Ross is a 42-year-old man who can take care of himself. Of course that's not unusual, but Scott also has physical disabilities. He is blind -- his blue eyes are prostheses. He lost his left leg to amputation and has had a liver transplant. He also has diabetes and heart disease. He needs a little bit of help with some everyday activities, but he'd prefer to hire his own help and make his own choices about who he gives his house key to. These are perfectly reasonable preferences for an independent adult -- preferences that couldn't be accommodated before he enrolled in IndependentChoices.
Scott is appreciative of the flexibility that IndependentChoices offers him. Not only can he hire his own personal care help -- usually friends he trusts -- but he's also been able to use his allowance to make purchases that enhance his ability to live independently. Scott saved part of his allowance to purchase a washing machine for his apartment because he felt vulnerable going to the Laundromat alone at night. He also used his allowance to purchase a bed because he had been sleeping on the floor.
Scott's purchases mean that he has less money left from his $394 monthly allowance to hire his friends to help him with daily personal care activities, but he's found a way to make the money go farther. He used to be employed as a professional massage therapist, so he sometimes barters for his friends' help by trading on his massage skills.
"I feel a lot more comfortable with my friends helping me out," says Scott, who has had some unfortunate experiences with personal care aides taking advantage of his blindness. "It's not good sense for a blind man to hand his keys over to people he doesn't know. And now I can be sure that the things I need to have done are really getting done."
Mrs. Maddox -- whom her loved ones call "Big Momma" -- is 74 years old and requires significant help with her personal care needs. She has diabetes, glaucoma, and has had several major operations and possibly several strokes that have confined her to a wheelchair. She can't do much for herself and must have help getting in and out bed, dressing, bathing, attending to her dietary requirements, taking her medications, and keeping up with the housework. But despite her physical frailty, Mrs. Maddox possesses a tremendous asset: an extensive support network of friends and family that want to help her continue to live independently.
Mrs. Maddox is a widow, but she is surrounded by family. Her many children, grandchildren, great-grandchildren, siblings, and extended family, including neighbors, provide a continual stream of sound and motion for Mrs. Maddox to watch bemusedly from her wheelchair. And when no one is coming or going, the wall of family photos that dominates her living room is a constant presence to keep her company. For five years, Mrs. Maddox received personal care services from aides that were sent to her home by an agency that contracted with Medicaid. Then her daughter read about IndependentChoices in the newspaper. Mrs. Maddox enrolled, but because she isn't comfortable making her own arrangements for care, her oldest daughter, Johnetta Thurman, became her representative decisionmaker.
"There's just something about having family look after her," says Johnetta, who lives in Chicago and travels frequently to Arkansas to make sure her mother's needs are being met. "She doesn't get nearly as many allergic reactions or bed sores now, and I think that's because when it's your own you're looking after, you pay more attention."
Mrs. Maddox' $413 monthly allowance is used to pay her 28-year-old granddaughter, Keisha Long, to spend at least two hours a day, seven days a week attending to Mrs. Maddox' needs. Her allowance is also used to pay her grandson $10 a week to do odd jobs around the house like mow the lawn, make repairs, and bathe Mrs. Maddox' dog, Jazzy J. And the allowance helps pay for over-the-counter medications and toiletries. Johnetta also has put some of the money to more creative use: part of it helped to pay for her mother's new dentures.
IndependentChoices is a bold experiment that may change the way personal care services are provided to people who want to direct their own care. it -- along with the other Cash & Counseling demonstrations in Florida and New Jersey -- seeks to answer some fundamental questions about new ways to deliver personal care services at home to people who need them, including:
Can a cash & counseling program meet the personal care needs of both younger and older people with disabilities?
Can such a program also succeed with elderly Medicaid clients who require home-delivered personal care services to live independently
Can a successful cash & counseling program serve as a model that can be transferred to other states?
What are the implications of a successful cash & counseling program for other populations, such as people with disabilities who are privately insured?
In Arkansas, the answer to the first two questions appears to be "yes." IndependentChoices is being regularly evaluated throughout the demonstration period by Mathematica Policy Research, Inc. Preliminary data and anecdotal evidence indicate that participants and their families are very satisfied with IndependentChoices. A more extensive and conclusive evaluation will be completed at the end of the demonstration period in 2002.
Definitive answers to all four questions are still several years away, but Arkansas has taken that first, giant leap forward into the realm of new possibilities -- a leap that may someday restore some measure of personal freedom and independence to millions of Americans.
For More Information:
IndependentChoices, Division of Aging and Adult Services, Arkansas Department of Human Services, PO Box 1437, Slot 1412, Little Rock, AR 72203-1437, (501) 682-2441, www.independentchoices.com
Cash & Counseling Demonstration Program, University of Maryland Center on Aging, 1240 HHP Building, College Park, MD 20742-2611, (301) 405-2548, www.inform.umd.edu/aging
Arkansas' IndependentChoices program is part of the national Cash & Counseling Demonstration Program, which allows Medicaid clients who require personal care services to purchase those services using a cash allowance. Demonstration programs are also underway in Florida and New Jersey.
The national Cash & Counseling Demonstration program is based at the University of Maryland Center on Aging, and is sponsored by:
Office of the Assistant Secretary for Planning and Evaluation, U.S.
Department of Health and Human Services
and
The Robert Wood Johnson
Foundation
In addition, the Health Care Financing Administration granted 1115 Research and Demonstration waivers to Arkansas, Florida, and New Jersey to implement cash & counseling programs and provides those states with continuing oversight.
Credits:
Writing: Teri Larson, Burness Communications
Photographs: Kelly
Quinn
Design: Jason Salas Design
| This brochure available from Arkansas Department of Human Services, Division of Aging and Adult Services, P.O. Box 1437, Slot 1412, Little Rock, AR 72203-1437, Tel: 501-682-2441, Web site: www.independentchoices.com |
Lynn Friss Feinberg, MSW, Principal
Investigator
Family Caregiver Alliance
Carol J. Whitlach, PhD,
Co-Principal Investigator
Shandra Tucke, MS, Project Coordinator
The
Benjamin Rose Institute
May 2000
Families play a central role in both the decision making and delivery of long-term care to adults with cognitive impairment (e.g., Alzheimer’s disease, stroke, Parkinson’s disease, traumatic brain injury). Losses of cognitive and functional abilities affect the individual and his or her family in profound ways. One of the most difficult problems a family caregiver faces is making decisions in “everyday” long-term care at home for a loved one whose capacity for planning and judgment may be impaired. Often conflicting factors must be weighed: “What is my wife’s potential risk or harm to herself or others?” “How do I weigh her wish not to let anyone in the house to help out, with my need for help because of my increasing exhaustion?” Deciding when to bathe, what to wear, whether to purchase and use support services (e.g., adult day services), or when to accept care from family members are examples of everyday care situations. In practice, it is oftentimes difficult to separate the needs, preferences and best interests of the person with dementia from the needs, preferences and best interests of the family.
This research explored choice and decision making in everyday care for persons with cognitive impairment and their family caregivers. This study differs from previous research on decision making by its focus on: (1) a community-dwelling, cognitively impaired population; (2) the dyad, i.e., the person with cognitive impairment and the family caregiver; and 3) the exploration of values, preferences and decision making for daily care. Given the aging of the population, the concomitant increase in the number of persons with cognitive impairment, the high costs of care, and the trend towards earlier diagnosis and new treatments to delay decline of dementing illnesses, understanding both voices--the person with cognitive impairment and the family caregiver--will advance the state-of-the-art in practice, research and public policy.
Method:
Respondents were 51 persons with cognitive impairment and 51 family caregivers. The respondent pairs or dyads (i.e., adult with cognitive impairment and the family caregiver) were recruited from Family Caregiver Alliance’s (FCA) client lists in the San Francisco Bay Area and outreach to local agencies. To be eligible, family caregivers had to be: (1) the spouse or adult child of the person with cognitive impairment; and (2) the primary caregiver. The person with cognitive impairment (i.e., the care receiver) had to meet the following inclusion criteria: (1) have a confirmed diagnosis from a physician of an adult-onset brain disease/disorder; (2) be living at home (i.e., living in the community rather than an institutional setting); and (3) be mildly to moderately cognitively impaired with scores between 13 to 26 as measured by the Folstein Mini-Mental State Exam (MMSE).
Three in-depth, in-person interviews were conducted per dyad. Experienced and trained research staff interviewed the caregiver and care receiver separately. The interviewing sequence and process was as follows: the person with cognitive impairment was interviewed first. Within one week, the family caregiver was interviewed and the person with cognitive impairment was interviewed a second time. Data collection began in July, 1998 for 10 months through April, 1999 to achieve a final sample of 51 dyads (3 interviews per dyad or 153 total completed interviews).
Sample:
Caregivers (n = 51) were predominantly wives (56.9%) and daughters or daughters in-law (21.5%), followed by husbands (11.8%) and sons (9.8%). Thus, more than two-thirds (68.7%) were spouses and one-third (31.3%) were adult children caring for a parent or parent-in-law. Caregivers were on average 63.5 years (SD = 14.6, range 30-90 years) although over half (51%) were at least 65 years of age or older, and most likely to be female (78.4%). Most caregivers were white (78.4%), married (80.4%) and about one-third were in the labor force employed either full-time (17.6%) or part-time (15.7%). Overall, the educational level of the family caregivers was high, with the large majority having at least some college education (84.3%). Most caregivers (23.5%) reported annual family income between $40,000 and $49,000 a year (1997 dollars). On average caregivers had been caring for their relatives for 3.1 years (SD = 3.4, range 1-23 years) and provided 80 hours of care per week (SD= 50.8, range 7-168 hours).
Care receivers (n = 51) were most typically husbands (58.8%), followed by mothers or mothers-in-law (21.5%), fathers (9.8%) and wives (9.8%). The average age of the care receivers was 75.6 years (SD = 10.0, range 39-89 years) although nearly nine out of ten (88%) were at least 65 years of age. The majority of care receivers were male (68.7%) and married (78.4%). The most commonly diagnosed brain disease/disorder was Alzheimer’s disease (51%) followed by other dementias such as Frontal Lobe, Lewy Body or Vascular dementia (13.7%), stroke (11.8%), non-specific dementia (9.8%), Parkinson’s disease (7.8%), non-degenerative brain disorders such as Anoxia (3.9%) and traumatic brain injury (2%). The average MMSE score of care receivers was 20.8 (SD = 4.06, range 13-26), with two-thirds (67%) considered mildly cognitively impaired (MMSE scores 20-26) and one-third (33%) moderately cognitively impaired (MMSE scores 13-19). Care receivers also had a high educational level with most (68.6%) having at least some college education.
Key Findings:
Are persons with cognitive impairment able to communicate their preferences for the care they are currently receiving or will need in the future?
Persons with cognitive impairment were able to answer questions about demographics, general preferences, and involvement in everyday care with a high degree of reliability (i.e., at two points in time) and validity (i.e., accuracy).
Similar results were found when care receivers were split into three groups based on high, medium and low MMSE scores with very few exceptions.
What is the decision-making process between adults with cognitive impairment and their family caregivers?
Care receivers were able to choose a person, most commonly the family caregiver, to make a variety of decisions for them should they no longer be able to make decisions for themselves in six areas: health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home.
Care receivers reported discussing their daily care wishes more than their nursing home wishes with their family caregivers, yet also felt their caregivers knew their wishes for daily and nursing home care equally well.
Caregivers felt they had discussed the care receiver’s wishes equally for both daily and nursing home care, yet also felt they knew the care receiver’s wishes for daily care better.
How does the availability and use of information and services, as well as the quality and cost of care, facilitate and/or impede family decision making related to the cognitively impaired adults’ everyday care?
The majority of the caregivers (84.3%) reported having used some type of paid service provider since the care receiver had been diagnosed with memory problems.
The three services most utilized by caregivers were information about the care receiver’s illness (65%), caregiver support groups (55%), and help with housework, shopping, laundry or cooking (53%). The three least utilized services were the Internet (14%), education classes for the caregiver (20%), and help with managing financial or legal matters (22%).
Service availability, affordability, and satisfaction were unrelated to the amount of discussion between the caregiver and care receiver about daily care wishes. However, the more satisfied a caregiver was with formal service usage, the less likely s/he was to have discussed nursing home care with care receiver.
Overall, family caregivers reported low levels of financial strain and believed they had enough money at the present time to cover the costs of care. However, more than one-third (38%) of the caregivers either said they had “just enough” or “not enough” money to make ends meet at the end of the month.
Care receivers with family caregivers who had higher financial strain reported feeling that their caregivers did not know their wishes for daily care.
The care receivers’ five top ranked values and preferences in aspects of daily life were related to the environment/safety and family caregiver issues: “Have a comfortable place to live” (Environment/Safety), “Have caregiver be the one to help out” (Family Caregiver issues), “Live in own home” (Environment/Safety), “Feel safe in home, even if it restricts activities” (Environment/Safety), and “Caregiver not put life on hold” (Family Caregiver Issues).
The majority of the persons with cognitive impairment said that it was very important to them to remain at home (78%) and not to live in a nursing home (73%).
Caregivers were fairly inaccurate in their perceptions of the importance of the care receiver’s values and preferences. Significant differences were found for 20 of the 36 values and preferences. Typically when there were significant differences, the care receiver placed greater importance on the item than the caregiver thought they did. For example, persons with cognitive impairment felt that “feel safe in home, even if it restricts activities” was significantly more important than caregivers felt it was to the care receiver.
The highest ranked values and preferences subscale for both the care receiver and the caregiver was Family Caregiver Issues, followed by Environment/Safety.
Care receivers and caregivers were congruent in their responses that the domain of Environment/Social Interactions (e.g., have a comfortable place to live, be with family or friends) was most important and significantly more important than the domain of Autonomy/Self Identity (e.g., do things for self, maintain dignity).
Is there congruence between the preferences of the adult with cognitive impairment and the needs and practices of the caregiver?
Care receivers were asked who they would like to help them (i.e.,family/friends, service providers, no preference) with specific tasks (i.e., shopping and cooking, laundry and housecleaning, getting up and dressing, bathing and toilet care). For all tasks, the care receivers preferred help from family/friends to paid services.
Caregivers were asked whether or not they were using paid help for the specific tasks (i.e., shopping and cooking). For each task, the majority of the caregivers’ needs and practices were congruent with the care receivers’ preferences. Caregivers had not used services when the care receiver preferred help from family/friends. Similarly, the caregivers had used services available in the community when the care receivers preferred help from service providers.
There was no association between how much the dyad had discussed the care receiver’s wishes for daily care and the level of congruence between the care receiver’s preferences and the caregiver’s needs and practices.
When there is a lack of congruence, whose wishes prevail and how does this influence service use patterns?
Care receivers and caregivers were asked to rate the importance of their own and their relative’s best interests when thinking about making daily care decisions in the future. Both the person with cognitive impairment and the family caregiver felt it was more important to consider the best interests of the other member of the dyad above their own best interests.
When all the questions about “best interests” were combined, however, the best interests of the person with cognitive impairment was considered more important than the best interests of the family caregiver.
The more important the care receiver considered his/her own best interests, the better the caregiver knew his/her wishes for daily care. This was particularly apparent in dyads with adult child caregivers. For these dyads, the more importance the care receiver placed on his/her own best interests, the more the adult child knew about their parent’s wishes for daily care.
The more a dyad disagreed on whether or not to use support services, the fewer services the caregiver actually used.
Discussion:
The most salient findings of this study indicate that persons with mild to moderate cognitive impairment are able to: (1) state consistent preferences and choices; (2) provide valid responses to questions about demographics and their own involvement in everyday care; (3) participate in care decisions; and (4) express life long values and wishes regarding care they are currently receiving or will need in the future.
Many of the questions asked of the persons with cognitive impairment requested that they provide the name of the specific person(s) they would like to make decisions for them if they were no longer able in the areas of health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home. The care receivers overwhelmingly preferred to pass decision-making responsibilities on to family members. In almost all cases (93%), the identified person was the family caregiver or another family member.
Results suggest that caregivers and care receivers are discussing the care receiver’s wishes for both daily and nursing home care. However, there are more discussions about daily care, likely because these families are dealing with the day-to-day challenges of caring for a person with mild to moderate cognitive impairment. But as our findings indicate, more frequent discussions do not necessarily translate into a better understanding of or agreement with the care receiver’s preferences for all types of everyday care.
Service availability, affordability and satisfaction with service use were found to be unrelated to the amount of discussion between the caregiver and care receiver about daily care wishes. However, the more satisfied a caregiver was with home and community-based services, the less likely s/he was to have discussed nursing home care with the care receiver. Conversely, if caregivers were unsatisfied with services, they appeared more likely to move to discussions about nursing home placement. Thus, our findings support the importance of an accessible, affordable and quality home and community-based system to meet the long-term care needs of people with chronic degenerative diseases.
Study results reveal the potentially negative effects of financial strain on the dyad’s level of congruence on both knowledge of and agreement with the care receiver’s daily care wishes. Although caregivers reported low levels of financial strain overall and believed they had enough money currently to cover the cost of care, those who experienced higher financial strain were less likely to know the care receiver’s wishes for daily care. Families experiencing the multiple and long-term stressors of caregiving may find that discussions about the care receiver’s daily care wishes are not a priority. Instead, they are worrying about how they are going to get through each day. Care receivers who feel their caregiver is experiencing financial strain may not want to “make matters worse” or more stressful for the caregiver so they do not make their preferences known. Unfortunately, if these issues are not discussed then the dyad will not be able to do advance planning, which, in the long run, could cause increased strain and impoverishment for the family.
Lastly, in this study the MMSE was not found to be a sensitive measure of competency relating to decision making. While the MMSE is widely used to screen for cognitive function, it does not determine decisional capacity. In discussing the interviewing experience with the research interviewers, they felt that some of the care receivers who screened out on the MMSE because of low scores would have been able to participate in this study and express valid and consistent preferences.
Practice Implications:
The study results suggest that persons with early to moderate cognitive impairment may well possess the capacity to express daily preferences for care, and should be encouraged to discuss their values and preferences with their family caregiver. In turn, this would assist family members by helping them to better understand the wishes and preferences of their loved ones earlier in the disease process before they, the family caregivers, inevitably must make difficult and often agonizing day-to-day long-term care decisions.
The findings suggest the need for incorporating a values assessment as part of interventions to improve education and enhance communication between the care receiver and the family caregiver around the issues of daily care preferences at home, as well as residential and nursing home settings. Caregivers do not fully understand the care preferences of their relative and often have inaccurate perceptions of the care receiver’s preferences and choices for everyday care. Thus, it may be helpful in counseling sessions, for example, to enhance the family’s decision-making skills by identifying and encouraging early conversations about the care receivers’ values and preferences for current and future daily living which are mutually acceptable to the family caregiver.
Our findings on values and preferences suggest that the primacy of personal autonomy may not be of critical importance to the person with cognitive impairment. Rather, the reciprocal nature of daily care decisions fosters interdependence within the family. This view of autonomy acknowledges a consumer-directed focus whereby the care receiver decides who they want to make and carry out activities in their place.
The assessment of values and care preferences and discussions about decision making are, practically speaking, difficult and challenging for families to undertake. Yet, ignoring the decision-making process between the caregiver and care receiver, and postponing discussions about the values and preferences of the person with cognitive impairment could have negative consequences for both members of the dyad over time. For many family members, knowing their loved ones’ wishes for daily care could reduce the strain in developing and implementing a plan for future long-term care services.
Policy Implications:
The findings of this study support the policy direction of utilizing a family systems approach whereby the person with cognitive impairment and the family caregiver are considered legitimate “consumers” of long-term care. A family systems approach would expand current practice by assessing: (1) the care receiver’s values and preferences for everyday care, rather than relying solely on information from the “proxy” or “surrogate,” who typically, is the family caregiver; and (2) the family caregiver’s situation, well-being, and need for targeted support services (e.g., respite, counseling).
Long-term care systems development, therefore, should incorporate the concept of family caregiving, rather than focusing exclusively on the care receiver when cognitive impairment is an issue. Few programs adequately address this critical policy area of supporting family caregivers to maintain their own quality of life.
Lastly, in this study, the person with cognitive impairment or “consumer” was able to answer questions that reflected an ability to delegate responsibility for directing aspects of care when he or she is no longer able to do so. In other words, the care receiver was able to make a consumer-directed choice to have a family member acting as a “consumer” on his or her behalf. This is particularly important in home and community-based programs where the goal of practitioners, for example, may be to maintain the well-being of the family caregiver so that they can continue to provide care to the person with cognitive impairment and honor the care receiver’s preferences to live in their own home.
Conclusion:
This study aimed to recognize the roles of both persons with cognitive impairment and their family caregivers with regard to everyday care preferences and decisions. Our research adds to the growing body of evidence that persons with early to moderate cognitive impairment are able to articulate values, preferences and choices for themselves, and be valid and reliable in their responses.
The challenge is to educate policymakers, practitioners and researchers to take into account the views and preferences of the person with cognitive impairment and the needs and situation of the family caregiver. How to balance divergent perspectives will continue to be a challenge for those who work with persons with cognitive impairment and their family caregivers. By recognizing and respecting both voices--the care receiver and caregiver--we can enhance future research and practice, foster the development of consumer direction in long-term care and advance public policy to support caregiving families.
Increased understanding of the preferences of the person with cognitive impairment will improve the decision-making process, lead to more informed decisions, and reduce the strain on family caregivers and associated health costs. It is, after all, family caregivers, who are today and will continue to be in the foreseeable future, the major providers of long-term care and who will, ultimately, be left with the experience of implementing these challenging and difficult everyday care decisions.
| The report is available from Family Caregiver Alliance, 690 Market Street, Suite 600, San Francisco, CA 94104, Tel: 415-434-3388, Fax: 415-434-3508, E-mail: info@caregiver.org, Web site: http://www.caregiver.org/publicationsC.html. |
Charles Moseley, EdD, Co-Director
National Program
Office, Self-Determination for People with Developmental Disabilities
In 1996, the Robert Wood Johnson Foundation (RWJ) provided funding to 19 states to develop and implement a new approach to supporting people with developmental disabilities. Entitled "Self-Determination," the concept is based on the premise that control over the services and supports that are offered to people with developmental disabilities should rest with the person receiving those services. State-of-the-art approaches to supporting people with developmental disabilities have long advocated the direct involvement of the individual receiving supports in the development of his or her plan of care. Self-determination takes the next step by placing final authority over the nature, extent and duration of services with the consumer. This approach differs significantly from the funding and decision making structure traditionally employed by state and local agencies responsible for assuring service delivery by including the individual as the primary decision maker in the process.
The overall objective of the RWJ initiative is to change state service delivery systems to actively support, encourage, and enable people to directly control the services they receive and the resources provided on their behalf. For some people receiving services, this change means taking active control over all aspects of their support system; budget, record keeping and supervision of support providers. Others, in contrast, may elect to assume direct control over a part of the supports they receive and may delegate responsibility for other aspects of their program to various individuals or members of their support team. The choice rests with each individual, his or her guardian/family and those he or she has chosen to rely on for assistance. Restructuring a system to enable those receiving support to "have it their way" means changing virtually all of the components of the current system to a greater or lesser extent. Implementation of self-determination, for example, will typically face different challenges for states with traditional, highly centralized systems that allocate funds through regulated rate setting formulae, than it will for states with more decentralized community systems that use comparatively flexible individual funding procedures.
To develop an understanding of the strategies that projects have found to be effective, an e-mail survey was recently sent to the project coordinators of each of the 19 states that received funding. Fourteen of the coordinators responded. The survey asked each person to briefly list five strategies that they used to implement self-determination over the past couple of years that really seemed to work, and five strategies or actions that did not seem to work very well.
Project administrators provided information regarding the approaches they use to cause change; tactics that bring about the intended results and those that are less productive or slow the process. Although the responses vary between states, there are several themes that are consistent in the answers received. The following are listed in order with the most frequently cited listed first.
Effective System Change Strategies:
Project coordinators credit the use of a particular strategy to bring about change as a key factor in the success of their initiatives. Components of successful strategies include:
Regardless of whether states implemented self-determination through broad based system change initiatives, or more localized pilot projects, coordinators attribute the success to the presence of a planned strategy to bring about change.
Bringing People Together in Coalitions to Advise, Plan, Train and Educate:
Project coordinators stress the importance of developing strong coalitions by combining the efforts of the project staff with those of self advocates, families and providers to jointly address concerns and build common agendas. Key activities mentioned include:
One project coordinator put it this way, using these integrated groups, which we have done for virtually every task and process we have addressed through the project, [has been] invaluable in redefining how people see people with disabilities, and each other, and in building the consensus necessary to move the project forward. Another respondent identified the importance of including other groups as partners in the change process, noting that the state director of the Division of Developmental Disabilities Services worked to form a powerful guiding coalition, [developing] bonds between advocacy, provider, families, self-advocates and state folks to push for systems reform. Another project coordinator indicated they involved people with disabilities, families and providers from the beginning by hiring people representing each group to provide training and technical assistance on self-determination and to facilitate the change process. [We have been] using the trilogy model of technical assistance: consumers, families, and providers to provide information, training, problem solving, in system change activities.
Providing Training:
Project coordinators emphasize the importance of training at all levels and at all times during the project as a key feature of the success they experienced. One person put it this way: Train, train, train. At every opportunity and juncture we provide training. Sometimes we repackage the same ideas -- it takes awhile for all of us to get it -- particularly those who are certain they've got it, but don't.
Coordinators note that training is particularly effective when it is inclusive, utilizing presentations and activities that involve stakeholders in all sessions from the beginning. They also emphasize that training is most effective when it is value based, relating the content to the core principles, philosophy and goals of self-determination, and when it demonstrates a commitment to self-determination by utilizing people with disabilities and families as trainers. Some state that they find the use of "external experts" in training particularly effective, while others less so, depending on the nature of the message and the audience (see below). One project coordinator credited the development of an "Educational Tool Box" used by advisory team members and staff to conduct presentations to ten different target groups on the values of self-determination as particularly effective.
Training is seen as important, not only because it offers the opportunity for families, staff and individuals with disabilities to learn new ideas and the issues involved in self-determination, but also because it communicates the expectations of the state regarding change. One project coordinator wrote, People needed to hear what was expected of them in a self-determined system, and needed to hear that they had permission to proceed.
Employing Effective Communication Strategies:
Project coordinators state that their ability to achieve successful project outcomes is significantly strengthened by the use of effective communication strategies, including:
Including Self-Determination Principles in Legislation, Regulations, Policy, Planning, and System Redesign Activities:
Many project coordinators identify the importance of including the principles of self-determination by specific reference in statutes, regulations, policies, procedures and planning documents as central to the success of their efforts. Regulatory change was used to ensure people receiving services have the clear authority to control the funds allocated in their behalf, to access the individual supports they need or to ensure a person-centered planning process. One director credits recently passed legislation that charges all agencies to explore the use of Fiscal intermediaries and vouchers to purchase services, such as personal assistance services, respite care, etc., so that people ...will have more control over the services they receive as well as the providers, as having a significant impact on the ability of their project to move ahead.
Effective Financial Strategy:
Several project coordinators identify the presence of a creative and effective financial strategy as another component of the successes they experienced. The development and/or use of an independent financial organization (fiscal intermediary, independent services organization, administrative services organization, etc.) separate from the regular service delivery system is cited as an effective way to enable people to control the resources provided for their support and to provide assistance with accounting, employment and record keeping.
Additional Strategies for Change Identified as Successful Include:
Many project coordinators point out that the strategies they identified as not working do not represent activities or approaches that failed outright or had not been productive in any way, as much as they are methods that offered only limited success, tactics that needed to be improved upon, or areas that require additional attention. An approach listed by one project as particularly effective, may prove less so for another. For example, while some projects found the changing of regulations to include reference to self-determination to be a successful strategy, others believe the absence of regulations provides them with the freedom to experiment and try out new ideas. Still others, mentioned that some consumers found the absence of regulations unsettling, believing it made the system less predictable and less accountable.
Involve Stakeholders from the Beginning:
Project coordinators stress the importance of involving people with disabilities, providers, families, and others from the beginning as a key to successful implementation. They also note the lack of such involvement to be a key deficit. People state that implementation of their projects was held back when the various constituent groups were not involved in a coordinated fashion from the beginning, when people felt they had been left out of the communication loop, or when they were not directly involved in key planning activities. Providers, in particular, needed to be involved in discussions of system design and planning from the early stages. One coordinator put it this way: attempts at system change which have not involved all the stakeholders have often come back to cause problems later, with those excluded feeling as if something is being done to them, rather than with or for them. She notes that this was especially true of providers.
Getting people together, however, is only half of the battle. Each of the various groups comes to the table with their own agendas. Communication can become challenging when, as one person commented, some don't want to play the game or collaborate with others. Several of those responding to the survey note that it was frequently difficult to help participants and families really took outside the box to new alternatives that might be available and to bring stakeholders to an agreement on key structural and philosophical issues. Finally, coordinators identify the need to learn and respect particular preferences for involvement that exist among the various groups. For example, self-advocates in one state preferred to work locally in their own communities, rather than on a statewide basis.
Develop Effective Communication Strategies:
Several coordinators identify communication as an area that requires considerable attention. Progress goes smoothly when communication between all stakeholders is good, and is hampered or stops altogether when communication breaks down. Coordinators state that it is important to spend enough time with groups to make certain they understand the purpose and goals of the project, and identify the lack of such attention as a barrier to success. As one director put it, communicate, communicate, communicate. Nature abhors a vacuum. If there is not enough correct information, rumors run wild. People feel left out -- like things are being done to them instead of with them. Other project coordinators note that everyone needs to hear the same thing at the same time, that the speakers who are brought in must have credibility with stakeholders and must be able to speak to their audiences in a manner and using terms they understand and accept. One coordinator notes that training does not provide people with vision, and attention needs to be placed on the use of communicators who can inspire people to see the potential of self-determination.
Address the Need to Manage Dual Systems:
Whether sites are implementing self-determination as a pilot project or as a part of a broader system restructuring activity, the process is not being accomplished in isolation. A consistent theme in the responses referred to the difficulty of achieving results while working within the structure of the traditional system with simultaneous, and at times competing, responsibilities to manage both effectively. Project coordinators describe how hard it is to place new approaches into practice within the context of multiple system change activities that are occurring in their states, departmental restructuring, new managed care initiatives, and other day-to-day operational activities that pull time and attention away from their efforts to develop self- determination.
One project coordinator, for example, worried that the success and attractiveness of the pilot project would pose difficulties for the rest of the department as people begin to request supports that redirect control from the traditional system before it is equipped to adequately respond. He was concerned that the department would be "blindsided" by providers or others who have an interest in keeping things the way they are and do not want to change.
Coordinators additionally mentioned that some providers and families are confused and threatened by the lack of regulations regarding self-determination and the acceptance of a new approach that does not have clear expectations regarding roles and responsibilities.
Clearly Define New Roles and Responsibilities:
Self-determination is typically being implemented by changing existing systems, rather than by creating totally new ones. Job descriptions are being re-written as the roles and responsibilities of staff shift to carry out different functions. Problems can occur when the message of change is unclear, when job assignments and responsibilities overlap, when families express reluctance to give up preferred staff, or when providers resist changes in current operating procedures.
Independent service coordination and brokerage is a key component of self- determination. Project coordinators identify the challenge of changing current program structures to carry out new functions, and of moving existing staff to assume new roles. One person described the difficulty of moving forward this way, We believed, and still believe, the people who facilitate person-centered plans and budgets need to be independent of financial, organizational and historical affiliations with the people they are supporting. Providers and our support coordinators have disagreed. Another person notes that [under the self-determination project]...a certain amount of resources are removed from the Area's control, and the service coordinators participating in the project must behave in ways that the supervisory staff may not understand or appreciate. The experience may become alienating for participating service coordinators and the environment has the potential for being a breeding ground far resentment.
Resolve Individual Budgeting and Finance Issues:
Several project coordinators wrote of the challenges involved with the development and large-scale implementation of individual budgets. One director stated, We have not found ways to really put money in the hands of the people we support. We still struggle with what it means, since it is virtually all Medicaid dollars. Another described the difficulty, trying to implement new ways of thinking and doing under a fee for service system. Others responded that the individual budgeting process and outcome turned out to be overwhelming for some people receiving services, and that the project needed to figure out more effective ways to support people through the process. She described the situation this way, I suspect we over-estimated the appeal of actually controlling dollars. For the most part, people seem to just want more individualized stuff. They want their needs met in ways that enhance their lives. In order for them to do that they must control money, understand the rules and regulations, negotiate budgets, all the pieces that go along with S-D. For some people it seems fairly overwhelming. We need further development of the broker/mentor role to take on some of the 'grunt work;' someone who understands how to effectively access the things that people really want and need.
Pay Attention to the Pace of Change:
A theme in the responses of many project directors relates to the pace of change. Everything takes longer than we expect. Its hard work and it takes time. For some it was too fast, particularly given their other duties and responsibilities. For other individuals, however, the process was moving too slow, and they felt the need for more pressure or urgency to move things forward and implement the changes that were being discussed. Others state that they feel implementation was hampered by unrealistic expectations regarding the changes that could actually be accomplished during the time frame. One coordinator wrote, moving with fewer people in the project may have given us more time and energy to systematically move the system change forward more effectively.
Additional Issues:
Project directors identified several other issues that seemed to get in the way of the ability of their program to move forward, including:
Several themes are reflected in the responses of self-determination project directors who responded to a short e-mail survey. The following strategies are seen as having a positive impact on the change process:
Project coordinators describe a change process that moves forward in a purposeful manner, yet is flexible in order to meet the needs of individual situations. Some strategies are more effective than others at bringing about desired outcomes, and it was frequently difficult for respondents to identify particular activities or tactics that did not work because they do not see the situation in those terms. Accordingly, the following "needs" were identified as key lessons learned:
The author appreciates the time and effort project coordinators spent completing the survey and the many follow-up discussions that took place.
| This paper available from Charles Moseley, EdD, Director, University of NH, Institute on Disability, National Program Office on Self-Determination, 7 Leavitt Lane, Suite 101, Durham, NH 03824-3522, Tel: 603-862-4810, Fax: 603-862-0615, E-mail: chas.moseley@unh.edu |
Roger Deshaies
New Mexico Department of
Health
January 22, 2001
These comments and observations may be familiar to you. Your own experiences with organizational development and management of a social services system may have resulted in similar conclusions. The following thoughts and points stem from several forays into system change and some of the lessons I learned, some the hard way. The system change efforts include the closure of a state operated institution for people with mental retardation in Maine (Pineland Center), the closure of a state operated institution in Arizona (the Arizona Training Center in Tucson) and the introduction of consumer self-directed model also in Arizona.
A Vision Statement is important but a Shared Vision is required.
The decision to close Pineland Center was made at a management meeting, proudly announced the day after and then severely criticized for the better part of 18 months. The decision to close the Center was criticized even by organizations and individuals supportive of developing a community-based system. The reason for much of the criticism was that the vision, proudly shared, was developed in isolation from people with disabilities, their families, service providers and others with an interest in the outcome.
The simple lesson is that people impacted by decisions need to be part of the decision making process. They need to develop a sense of ownership with the direction being undertaken.
There will always be individuals and/or groups that will not "sign-on", however while they tend to be loud, they are often few in numbers. Having a shared vision provides a great counter to the boisterous few by demonstrating the community support for the direction of change in the system of support.
The importance of communication cannot be overstated but it is the significance of conversations that really contributes to success.
The rules of effective communication apply, of course, especially the mandate for continuous communications. The importance of clarity, honesty and communicating using multiple media must be part of any strategy.
You can acquire numerous books on communication and effective strategies. A simple lesion, however, is that visibility fosters credibility. While those strategies work and are important, simple conversations with individuals and groups can have a greater impact. But they must be conversations where you are prepared to listen and answer questions both that are asked and implied. What is an implied question? The one often that lurks beneath the apprehension of change is "how will this change affect me?" There is a reluctance to ask such a personal question but it is an issue that significantly impacts on the willingness of people to participant in true system change and redesign.
You need to understand how the change that is being planned impacts on individuals within the organization, their roles, responsibilities and future. What does self-directed services mean to my job if I now currently approve and make those decisions? Will have a job? If I will have a job, what will I do? What are the requirements for the emerging duties that I will have? Will I qualify and can I succeed? Often these questions are not asked but they exist in the minds of many within the organization, even with the managers who are planning the redesign.
There is honesty and then there is honesty!
Within the systems that I have worked, it was not uncommon to hear someone say, "they just did not ask me the right question." Usually some statement was associated with a legislative hearing or an interview with a reporter. This lack of communicating candidly will create a problem in implementing system reform. The motivation for partial statements at times is in deference to hurt feelings, morale, and premature disclosures or to avoid confrontations. Sometimes the reason is that you simply do not know the answer and you try to "dance" through the issue with vague comments. Statements are therefore put through such a spin control that technically you are telling the truth but the omissions or generalities often make the message incomplete at best or at worst disingenuous.
There is a fine line to walk in system change efforts. Research has supported the importance that people place on the belief that management knows what it is doing during a redesign effort. This obligation can sometimes hamper a change effort if key decision-makers internalize a belief that they must have answers to all questions before any action can be taken. Welcome to "analysis paralysis," one of the challenges that must be overcome.
The simple lesson learned is that it is ok to acknowledge that you do not know the answer yet it is never ok to be dishonest. The truth of system change is that we often learn together and openness often leads to trust which is essential to effective leadership. My experience has taught me the following:
To acknowledge that you are uncertain or do not know an answer does not mean that you are indifferent to the issues or the concerns. That is why it is important to do your homework and be able to articulate clear values and beliefs supported with data and research.
It is important to acknowledge that it some ways the work is "still in progress" and to use the "conversations" you had to demonstrate changes made in the planning and implementation process. It is especially important to demonstrate an understanding of so unintended consequences" and how the implementation will be monitored to avoid such actions. One effective strategy to address concerns regarding unintended consequences is to hold participants harmless. You agree upon a certain threshold, whether its financial or other standards for a time-limited basis. This often removes the uncertainty as a barrier to moving forward.
Making the case for change and instituting a sense of urgency.
Why are you doing this? What is the motivation for change? Do you have a mandate for changing the organization? Why now and why can't we wait?
You must be able to translate the philosophy that governs the values and principles into specific plans on implementation and answers to the questions in the above paragraph.
John Kofter from the Harvard Business School identified in one of his works that the number one reason that organizations fail in the effort at change is internal complacency. One of the tools of internal complacency is the "analysis paralysis" mentioned, where the perceived absence of data leads to filibusters that prevent the organization from moving forward. One of the manifestations of this is the need to revisit past decisions and re-ask questions already addressed.
From my experience the likelihood for this organizational complacency is directly tied to the following:
Fundamental Issues, from philosophy to practice:
My experience has led me to conclude that you can divide people into one of three groups whenever you are talking about system change. The first group includes people who have been waiting for you to catch up with them. They have been waiting for the changes and may be a little disappointed that you are not moving as fast as they may want.
The second group includes people who have made up their minds that under no circumstance can they agree with or support what you want to do. Ironically, we spend a considerable of time trying to convert them to "our way of thinking", often at the expense of the third group.
The third group includes people who have not made up their minds. They may find the change desirable yet are apprehensive. This group requires you to convert the philosophy that generated the vision statement, the guiding principles and the mission into concrete and detail-oriented plans.
A simple lesson learned along the way was to spend far less time with dinosaurs and more time with the people wanting and needing assistance in translating a philosophical shift into day-to-day practices.
What are some examples?
Consumer-directed supports require organizational reconfiguration, additional system supports and the elimination of some practices. The core question is whether the organization is ready to make such changes. Some issues to consider:
Risk Management. Quality of Care and Quality of Life
Quality Assurance is a central component of any system. Movement towards a self-determination model and consumer-directed support system raises numerous questions specific to what components should make up such a system.
A simple lesson learned is that one of the most fervent challenges is the one that focuses on concerns and allegations that the changes envisioned will come at the expense of people with developmental disabilities' welfare. A common concern is that an institution (e.g., an ICF/MR or a Group Home) provides a level of safety, surveillance and monitoring lacking within supportive living or other alternates. You need to prepare for a response.
Quality of Care and Quality of Life can be seen as opposite points on a continuum of support. Quality of Care centers on health, safety, accidents and other indicators that aid in defining one's overall welfare. Quality of Life centers on friendships, relationships and other indicators that are valued by the person such as freedom to come and go. There is a tension between these points as often rules and regulations that are focused on ensuring Quality of Care set standards and requirements that may comprise one's Quality of Life. Organizations along with all the stakeholders must decide the balance between these points, what are acceptable risks when public funds are used to support an individual.
Jim Conroy's work especially on "valued outcomes" may be worth your time, if you are not familiar.
What are you buying, from capacity to outcomes:
Most contracts for support services center on capacity with requirements for general compliance with an agency's rules, fiscal reporting and similar standards. This approach will not suffice for consumer-directed supports. When resources are placed under the control of people with developmental disabilities and they in turn can choose the intensity and frequency of supports, different system requirements are needed:
Courage to slay dragons:
Robert Kriegel and David Brandt wrote an excellent book titled Sacred Cows Make The Best Burgers. The essence of their work is that all organizations have procedures and practices that are viewed as untouchable but no longer have any functional purpose within the organization and in fact may be counter to the new direction. Yet they remain often as barriers to the change you wish to implement.
A challenge you face is to actually rid the organization of these barriers. This is easier said than done often because many of the procedures tend to be tied to the image of the organization. Without a change, however, your new procedures may not have a chance, in particular regarding the new policies and procedures that are required for the successful implementation of a self-directed system.
From Leader-driven change to the "Invisible Person".
Everything starts someplace and significant reform such as transitioning to a consumer-driven system requires a champion, someone who will be the point in the initial change effort. The person will explain the reasons for such a transition effort and offer the benefits and the anticipated outcomes; the person will explain the urgency and why this change must happen sooner rather than later; the person will explain the guiding principles and answer the initial questions. Then and most importantly, the leader of the effort must begin transitioning the "ownership" to a broad-based stakeholder group. The ownership must become system-wide. This does not mean that the leader abdicates his/her responsibilities as the "change agent," rather the leader shifts from the foreground to the background. I have described this as an architect who after designing the structure of a house gives the plans to a master builder. The master builder task is to translate the vision of the architect to the reality. Each knows that the original plan may require changes along the way.
Conclusion:
The introduction of a consumer-directed system is not a program and it is not a project. It is a commitment to change how your organization constructs, delivers and monitors supports to people with developmental disabilities. Your challenges are not unique to New Mexico yet the structure of the solutions must be tailored to the cultural values of the organizations and communities that comprise you state.
The purpose of this document is to share some thoughts of lessons learned along the way. I have found some guiding principles helpful:
| This paper available from Roger Deshaies, Consultant, William M. Mercer, Inc., 3131 East Camelback Road, #300, Phoenix, AZ 85016, Tel: 602-522-6549, Fax: 602-957-9573, E-mail: roger.deshaies@us.wmmercer.com |
John Agosta, Valerie Bradley, Sarah Taub, Kerri Melda,
Marianne Taylor, Madeleine Kimmich, Alyssa Semple and Rhonda Kelsch
Human
Services Research Institute
July 1999
The changes that are emerging in systems of support for people with developmental disabilities are part of a trajectory of reform that began decades ago. These reforms have encompassed the exposure of the inhumane conditions associated with institutions, the creation of alternative residential and day supports in the community, the passage of significant federal and state legislation supporting legal and civil rights of people with disabilities, and the provision of supports to families in the interests of maintaining children with disabilities in their communities. As each component of reform has taken root, the power of ideas like normalization, inclusion, and participation to criticize practice and to -inform further change has increased. It is as if the closer we think we are to the realization of these ideals, the more they demand of our skills and creativity.
In the most recent manifestation of change, these ideals have lead many in the field to question the almost total control that public funders and providers have over the life choices of individuals with developmental disabilities and their families. In this system, funds are allocated to providers and people with disabilities and their families have little or no say as to which providers are to supply services or what the configuration of those services should be. Changing this imbalance of power and control is at the heart of the ideal of self-determination. A recent definition of this transformative notion is as follows:
Self-determination is a national movement to redesign long-term care for individuals with developmental disabilities that eschews traditional program model and facility placement approaches. . . Self-determination insists that public dollars be seen as an investment in the lives of people with disabilities. Public dollars need to be used strategically to support existing family and community relationships as well as help create them where they do not now exist (Nemey, 1998).
Another-definition that also captures this shift in influence and control is:
...[in self-determination], systems are structured so that service recipients influence policy, and individuals have the freedom and authority to determine the substance and texture of their own lives, including control over the resources allocated for personal services or support (Agosta, 1998).
To bring about a system that respects notions of self-determination, changes are required in both formal bureaucratic structures (e.g., funding, quality assurance) and in the attitudes and capabilities of providers, service brokers, monitors, families and people with disabilities. To facilitate these comprehensive changes, the Robert Wood Johnson Foundation established the Self-determination Demonstrations.
The Robert Wood Johnson Foundation is supporting a range of demonstration activities around the country to explore ways in which people with developmental disabilities can self-determine the supports they receive. The Foundation has allocated $4,976,341 million to support projects in 19 states. Allocations for each project range from $400,000 for a 3-year period, to $200,000 for a 2-year period and $1 00,000 for a 1-year period. Additionally, the Foundation granted $740,000 to New Hampshire for a four year, statewide self-determination effort.
The goal of the self-determination demonstrations is to make the choices, preferences, and individual gifts of people with developmental disabilities the most powerful influences on the system. This requires a transfer of control over resources to the person receiving services. To achieve this overall aim, the 19 self-determination projects are--in one form or another--attempting to put into place the following components:
Individually controlled budgets that can be allocated and dispersed given an agreed upon person-centered supports plan.
Means to ensure that people with disabilities receive the assistance necessary to identify and obtain necessary supports, and
Mechanisms to provide needed administrative support to assure that the systems work efficiently and effectively (e.g., to complete associated paperwork, maintain a satisfactory audit trail, disperse funding, or provide ample oversight).
Because the changes anticipated in the Foundation's initiative represent major alterations in the existing approach to providing services, the ability to document the process of implementation as well as the outcomes for individuals is crucial for others to gain a practical understanding of the self-determination approach. The purpose of this study--an impact assessment of the demonstrations--is to document important process, cost and policy variables associated with the demonstrations.
Five Recent Trends And Implications For the Demonstrations
As suggested earlier, regardless of the Foundation's initiative, the service system continues to evolve in face of a variety of irreducible pressures. While the nature and magnitude of these pressures are not easily quantified, we understood that each could either have a positive or hindering effect on the RWJ Demonstrations, or no effect at all. Agosta (1997) describes five such pressures:
The push for continued changes In the service system to promote community Integration and self- determination.
The RWJ Demonstrations may be viewed as part of an ongoing change process beginning with the exposure of the dehumanizing conditions in institutions. Over the past 30 years, the field has shifted away from a reliance on facility-based or congregate service approaches. In their place, approaches to promote community integration and person-centered supports are have gained favor.
However, until recently, professional judgment was still more influential in decisions about the character of services and supports than were the choices and preferences of service recipients. In addition, the choices available to people with disabilities were restricted to the residential and vocational slots available. Emerging practice, however, suggests that people with developmental disabilities must play leading roles in determining the substance of their lives, and that relevant and preferred supports should be provided as needed. Moving past traditional professional, or industry-dominated approaches, the field is struggling to become more responsive to the demands of service recipients -- to promote and honor self-determined lives.
At the core of this concept is the belief that individuals must have the authority and resources to plan their own futures, negotiate for funds, and direct the use of an allocated amount of money (Barrs at al., l995; Nemey & Shumway, 1996; Agosta & Kimmich, 1997). Such reforms will inevitably change the structure of the service system.
The growing demand for developmental disabilities services and the presence of service "wait lists."
America is graying. Due to advances in medical care, people are living longer and that includes people with disabilities. In addition, the parents of many adults with disabilities are growing too old to continue to provide care at home. Middle aged baby boomers that had children with disabilities are finding that their children are now aging into the adult system. Consequently, the pressures placed on the long-term supports system for adults with disabilities can only grow over the next several years.
Prouty and Lakin (1999) estimate that in June 1998 there were 61,373 individuals who were on wait lists for residential services. They conclude that: States "would need to expand their current residential services capacity by 17.6% to create residential services for all the people presently on waiting lists for them. This does not include growth in specific types of services needed to serve persons wishing to move from one type of residential setting to another (e.g., a large facility to a community residence)" (p. 78). In addition, these estimates do not address the thousands others who may be waiting for daytime vocational services (e.g., supported employment).
Echoing such research, a National Arc study concludes that..the nationwide shortfall of community support services has reached crisis proportions for people with mental retardation and their families. The Arc's report examines state-by-state data-regarding the status of requests for critical residential day/vocational and other community support services. According to the report, more than 218,000 requests for support remain unanswered for people with mental retardation and their families (Arc, 1997).
Despite encouraging events where "new money" is allocated to state developmental disability authorities to accommodate portions of the wait list (e.g, as in MA, MT, NC, LA, OR and NJ), the field must face up to the sobering challenge it faces. These numbers--and accompanying personal stories--reflect a growing problem for policy makers.
Continued pressure to contain the growth of Medicaid spending.
Medicaid was created in 1965 to help states pay the medical bills of low-income individuals. Today, Medicaid has three service domains: a health insurance program for low income individuals, a long-term care program for seniors and people with disabilities, and a specialized service program for people with developmental disabilities or mental illness (Congressional Research Services, 1993). The costs of Medicaid services nationally are split between the federal government and the states. The percentage of costs borne by the federal government varies from state to state, but the national average is 57% federal and 43% state.
Medicaid financing is especially important to the developmental disabilities field. Today, about 76% of what states spend on long-term services and supports (excluding acute health care) for people with developmental disabilities is paid by state and federal Medicaid dollars, at a cost of over $22 billion annually (Braddock et During 1977-1988, total federal-state Medicaid spending for individuals with developmental disabilities grew by 1 6% annually in real economic terms, declining to about 9% annually from 1988-1992 and holding steady at an estimated growth rate of 9.5% for 1996 (Braddock and Hemp 1996).
During the 1990s, there was enormous pressure building within the federal government to contain Medicaid costs (which coincided with the spike in waiting lists noted above). Medicaid spending increased by 22.4% from 1988-1992 and 9.5% from 1992-1995 (Holahan & Uska, 1996). At the time, increases like these stirred interest for significant Medicaid reform. Since then, however, growth rates have dropped (3.2% in 1995-96). The lower rates coupled with a strong national economy imply lower annual costs and reduced pressure for Medicaid reform, at least at the federal level.
Stateside politics, however, are not so clear. Strong state economies have eased some concern over spending. Indeed, several states are operating with budget surpluses. Yet, competition for resources remains great within state budgets. From a state perspective, in 1970 Medicaid spending amounted to about 4% of state budgets, but by 1995 the proportion had nearly quintupled to l9% (NASBO, 1996). And this trend is predicted to continue on through the year 2002 (Wharton Economic Forecasting Associates, 1995). This poses enormous problems for state policy makers, who must juggle competing demands, such as education, corrections and transportation. When Medicaid takes up more of the budget, then less is left for other important functions. As a result, with or without federal action, governors and legislatures have made holding down Medicaid spending a top priority.
The potential use of "managed care strategies" to administer social service systems.
The term "managed care" refers to strategies that reduce costs and maximize the value of services by controlling spending and service use. Typically, managed care arrangements involve the enrollment of individuals in a managed care organization (MCO), where the MCO has contractual agreements with a payer and providers to assure delivery of services to the enrollees. In essence, the MCO is a risk-bearing entity which receives a fixed payment to assure that a set of people get the services they need as specified in the managed care plan.
During the mid 1990's there was growing interest nationally over the use of managed care strategies to contain spending for health care and other social services, including developmental disabilities. Indeed, managed care strategies are now routinely used to administer Medicaid health and behavioral health care systems, and have entered the child welfare field.
Developmental disability systems, however, have typically not been asked to participate in managed care arrangements. And, as the decade concludes, the "managed care scare" of the mid-1990s has subsided. Yet in some states (e.g., MD, MI, WI, PA) the prospect of systems reform based in managed care was quite real and continues to play a role in state decision-making.
More than that, the underlying appeal and potential utility of certain managed care strategies have not evaporated. Indeed, as states work to integrate the concept of self-determination into their systems, selected managed care strategies are being put to work. These include concepts such as capitation, risk management and service substitution (Agosta & Keisch, 1999).
The emerging re-structuring of the developmental disabilities provider industry.
While there is no ground swell for provider restructuring yet apparent in the developmental disabilities field, there are clear signs of change:
With increasing frequency, multi-state service providers are accelerating their entry into developmental disabilities service markets. These types of organizations have existed for many years and have contributed to the development of the present service system. Over the past few years, however, some have gained the capital (e.g., through association with much larger health oriented organizations) to aggressively expand their base, either through outright purchase of provider businesses or by contract with a state or local payer.
Providers in several states are pursuing efforts to organize as formal service networks. Such networking could result in: (a) increased administrative efficiencies, (b) enhanced and consolidated capacity to deliver direct services, and (c) a formal organization for future payers (e.g., government or people with disabilities) to negotiate and contract with. In addition, because small or niche (e.g., supported employment only) providers may have difficulty competing with larger organizations in a more competitive market, networking may be desirable for such providers because of the added size and safety a coordinated network can bring.
Are trends like these good or bad for the developmental disabilities field? It's hard to say, yet the trends are easily observed from state to state and are working to reshape the industry.
These five trends have and will have an influence on the conduct of the self- determination initiatives. Specifically, in those states where there has been substantial momentum toward inclusion and person-centered practices, the projects have a distinct foundation on which to build and the presence of a mind-set and language from which to draw. The pressures of the mounting wait list present another somewhat more unpredictable element in the calculus surrounding the self-determination initiative. In Maryland and Oregon, for instance, the tide of self-determination has risen significantly because of the large infusion of resources as part of a related wait list reform. While this collateral initiative has helped accelerate the diffusion of self-determination practices around the state, it is still not clear whether the pressure to distribute the windfall of wait list funds will take precedence over the need to create self-determined futures one person at a time.
The pressure to contain Medicaid costs and the subsequent exploration of managed care alternatives to fee for service and "grant in aid" funding presents planners and advocates in some states (e.g., Vermont, Wisconsin and Michigan) with the opportunity to turn adversity into possibility. That is to offer policy makers an alternative to the models that dominate behavioral health care through the marriage of self-det6rinination with selected managed care constructs such as capitation, risk management and service substitution.
Finally, the pressures generated by changes in the "provider marketplace" are by no means uniformly distributed nationally, and do not immediately impede or facilitate the implementation of self-determination. It does seem inevitable, however, that an initiative premised significantly on choice will at some point butt up against the increasing consolidation of corporate provider auspices.
An assessment of the impact of sel-determination activities should address three distinct goals:
To assess whether particular projects reach the goals outlined in their proposals;
To document the changes that take place at the state and local level, as well as the constraints and obstacles encountered (e.g., provider performance, staffing, regulatory and statutory issues, etc.), and the relevant national policy issues;
To assess whether self-determination approaches result in increased choice and control among project participants, and the creation of individual supports.
This impact assessment report focuses on the first two goals noted above. Actions and outcomes related to the third goal on project participants are being examined by the Center on Outcome Analysis (COA). In addition, project costs and their relation to impacts on individuals is being investigated collaboratively by COA and HSRI.
To assess the progress made by the demonstration projects to achieve these goals, information was collected to address five fundamental questions:
What were the goals, implementation strategy and/or planned outcomes of each project?
What actions did the projects actually take to achieve their goals?
What actions went smoothly and well?
What obstacles or constraints were encountered?
What were the results of the actions taken?
An important key to the impact analysis has been to ensure that the impacts that are emerging are in fact a reflection of the key components of self-determination rather than some other intervention or construct. Comparing outcomes to process and theory provides a means of validating the consistency between the program "theory" and the actual intervention that was implemented.
The first step in the impact analysis process was to articulate the underlying assumptions that give an activity its momentum and credibility. In the case of the self-determination projects, it is assumed that a system in which individuals with developmental disabilities and their families are given control over resources and the ability to make choices about the nature of their supports, is more cost effective and responsive than conventional service systems. It is further assumed that such a model should lead to proximal outcomes that include more individually tailored supports, and the use of a broader array of natural and generic as well as specialized supports. The ultimate outcomes should include the realization of individual choices and aspirations, more cost effective services, higher individual satisfaction, and improved consumer participation and inclusion in communities. The initiative also anticipates changes in state systems (quality assurance, resource allocation, Medicaid policy, etc.) designed to allow consumer choice.
The next step was to enumerate the structural elements that will make the theory take shape in practice. Such ingredients may include--depending on the state or local area--an agent or service broker, person-centered planning approaches, flexible funding, self advocacy training and organizing, and so forth. With respect to the success of each individual project, project staff sought to document the particular implementation details. For instance, did funding mechanisms change, were fiscal intermediaries put into place, were participants given access to independent support brokers?
Further, those elements that were hypothesized to be associated with successful outcomes (e.g., training, technical assistance, leadership, and client characteristics) were also documented in order to understand the context within which the implementation of self-determination efforts is going forward. Given that the Foundation anticipates changes at the state level, it was also important to document key variables in the state context including extent of institutionalization, historical use of Medicaid waiver, level of support among key policy makers, and provider configuration.
Finally, the methodology provides a means to link the results of the client outcome information generated in the separate evaluation -- as well as the quantitative cost data -- with the qualitative information catalogued at the site and state level.
This report documents all activities associated with the Year One Impact Assessment and the resulting findings. The remainder of the report is organized as follows:
Chapter 2 -- Study Methods -- This chapter provides an overview of the assessment methods that were applied to complete this phase of the television.
Chapter 3 -- State Summaries -- This chapter includes brief descriptions of the initial objectives and implementation strategies of each state project.
Chapter 4 -- Findings: Mediating Factors -- The demonstrations did not unfold in isolation, but within an already active systems context. This chapter describes several of the mediating factors at work in state systems.
Chapter 5 -- Findings: What Was Done -- This chapter describes the "independent variables" or discrete actions taken by states to promote in success.
Chapter 6 -- Findings: First Year Progress -- This chapter presents findings related to the site demonstrations' "dependent variables" or the outcomes, overall analysis of the goals set by the sites and the progress made toward these goals.
Chapter 7 -- Observations and Concluding Remarks -- This chapter describes the facilitating factors and obstacles that were encountered by the projects. Additionally, it offers final summary observations and conclusions regarding project findings.
| This paper available from The Robert Wood Johnson Foundation, Route One and College Road East, P.O. Box 2316, Princeton, NJ 08543-2316 Tel: 609-243-5869, Web site: http://rwjf.org |
Joseph P. Shapiro
Reprinted from U.S. NEWS &
WORLD REPORT, April 23, 2001, Pages 26-27
(INTRO ONLY)
It felt "almost like somebody died." Carleen Ashley remembers the day her twin sister, Cathy, was sent to live far away. Shortly after the twins' seventh birthday, on a sunny spring day in 1965, Cathy's mother carried the severely disabled girl, in a red-and-white party dress, to the family station wagon. Their mom cradled Cathy in her lap while their dad drove, in near silence, more than 100 miles to a New Hampshire hospital for children with mental retardation.
| This publication can be purchased from U.S. News, Speciality Marketing, 450 West 33rd Street, New York, NY 10001, Tel: 800-836-6397, Fax: 602-870-4760, E-mail onlinecatalog@usnews.com, Web site: http://www.usnews.com/usnews/home.htm |
Gary Smith, Director of Special Projects
National
Association of State Directors of Developmental Disabilities Services, Inc.,
113 Oronoco Street, Alexandria, VA 22314
February 5, 1999
The NASDDDS Special Studies Initiative...
In November 1998, the NASDDDS Board of Directors launched the Association's Special Studies Initiative. The Initiative's aim is to furnish in-depth information to the Association's member agencies concerning topics that they have identified as especially critical in improving publicly funded services and supports for people with developmental disabilities. Special studies focus areas are selected via membership survey.
Special Study Focus: Individual Resource Allocations
Many state developmental disabilities authorities (SDDAS) are keenly interested in employing Individual Resource Allocations (IRAs) to enable individuals and families to play a more direct role in managing the services and supports they receive. Various SDDA policy aims spark this interest, including:
Enabling individuals and families to assert a stronger role in selecting the services and supports they receive, deciding which agencies or individuals will furnish them, and actively managing their delivery. IRAs are a central feature of self-determination and consumer-directed supports strategies,
Promoting greater flexibility in deploying available dollars on behalf of the individual in order to encourage the best use of limited public dollars; and,
Making dollars "portable" (i.e., tying dollars to the individual rather than particular service agencies or program categories) and, thereby, avoiding the pitfalls associated with "program funding" or "slot-based contracting".
The Robert Wood Johnson Foundation Self-Determination projects that are underway around the nation have played a critical role in spurring SDDA interest in employing IRAs.
Prospectively allocating an overall budget to individuals and families is a substantial departure from conventional state developmental disabilities funding policies and practices. Such policies usually concern determining payment rates for specific services/providers and regulating expenditures by limiting "slots" by program or service category. These policies and practices are regularly criticized as undermining individual choice and creating serious obstacles to tailoring services and supports to individual needs, preferences and circumstances.
IRAs are a different matter altogether. Their use means decoupling dollars from specific service types or community service organizations in favor of setting an overall budget within which the individual or family has considerable discretion in making decisions concerning the services that will best meet their needs and the agencies/individuals who will furnish them. IRAs are a direct way of empowering and engaging individuals and families in deciding how public dollars are used so that the services and supports purchased are relevant and important to them. Since IRAs are tied to a specific individual or family rather than provider or service type, the dollars are portable. Portability is important in creating incentives for service agencies to furnish services and supports that are responsive to each person's preferences.
There are many compelling reasons for SDDAs to employ IRAs. But, the challenge SDDAs face is selecting a method for determining the dollar amount of each person's IRA. However this determination is made, it is important that the method yield fair and equitable results. That is, individuals and families in similar circumstances will have comparable allocations and the dollar amounts reasonably approximate the dollars needed to meet the person's needs. IRA determination methods also must recognize that support needs vary considerably among individuals and such needs are likely to change over time.
In some cases, states and/or localities determine the amount of a person's IRA based on the dollar value of the publicly funded services and supports the person presently is receiving. That is, the budget is what is presently spent on behalf of the individual and the individual may change how these dollars are used. Basing the IRA on current outlays is a pragmatic way for setting a budget mark. However, many SDDAs are seeking more generalized methods, especially with respect to determining IRAs for individuals and families who are new to the service system.
At this juncture, states are exploring various methods for determining IRAs. No single "best practice" has emerged. Since the development of such methods is in its formative stage, the Association's special study will include a series of policy and practice briefs that profile various methods on a case-by-case basis.
Introduction
In July 1998, the Wyoming Division of Developmental Disabilities (DDD) implemented its DOORS methodology for determining individual resource allocations (IRAs) for individuals who participate in the state's Medicaid home and community-based (HCB) waiver program for adults with developmental disabilities. In January 1999, the Division extended the use of IRAs to participants in the state's HCB waiver program for children with developmental disabilities.
The DOORS IRAs were developed through statistical analyses of the interplay among consumer characteristics, current services and costs. The DOORS IRA is an individually determined total budget mark within which a person's local/individual planning team develops his or her service plan and HCB waiver services are authorized. There has been broad acceptance of DOORS among stakeholders, especially because IRAs are regarded as having been fairly and equitably determined.
This policy and practice brief describes the development and key features of Wyoming's DOORS IRA determination methodology and how IRAs are employed m Wyoming. It also offers various observations concerning the applicability of the methodology elsewhere.
Background: Wyoming's Developmental Disabilities Service System
Until 1990, Wyoming's community service system for people with developmental disabilities (especially adults) was limited in scope. Most state dollars were earmarked for services at the Wyoming State Training School (WSTS) in Lander, the state's only large public mental retardation facility. Only 200 individuals received state-reimbursed community residential services. Wyoming stood alone among the states in not using federal Medicaid dollars (either by way of the ICF/MR or HCB waiver programs) to underwrite the costs of specialized long-term services and supports for people with developmental disabilities.
As an outgrowth of a lawsuit filed in 1990, state officials agreed to: (a) arrange for community services on behalf of WSTS residents who had been determined to be inappropriately placed at the facility; (b) obtain ICF/MR certification of WSTS; and, (c) take a variety of steps to expand and enhance the quality and availability of community services and supports. In order to finance the expansion of Wyoming's community service system, DDD officials turned to the Medicaid home and community-based waiver program rather than sponsor the development of community ICFs/MR. In 1991, the federal Health Care Financing Administration ( HCFA) approved Wyoming's request to launch an HCB waiver program for adults with developmental disabilities. In 1992, HCFA approved a second HCB waiver program for children and youth (up to age 2l) with developmental disabilities. Since going into effect, both of these waiver programs have played an enormously important role in underwriting the community placement of children and adults from WSTS as well as the expansion of community services for other citizens with developmental disabilities.
Between 1990 and 1996, Wyoming's total systemwide expenditures for developmental disabilities services more than doubled, increasing from approximately $30.0 million to $65.5 million. Between 1988 and the present, the number of WSTS residents has dropped from 374 to 124. In 1998, 672 individuals participated in the adult HCB waiver program at an overall annual cost of $29.3 million; the children's waiver program served 363 children at a cost of $5.1 million. Relative to state population, Wyoming today supports more individuals through its developmental disabilities HCB waiver programs than the vast majority of other states. In 1996, Wyoming ranked fourth among the states in its "fiscal effort" in support of people with developmental disabilities. Since 1990, Wyoming state tax dollar support of community services and supports has nearly quadrupled.
Wyoming's developmental disabilities service system today is vastly different than in 1990. The rapid-paced expansion of Wyoming's community service system in a compressed period of time posed many challenges for state officials and community service organizations alike. Certainly, one of the greatest challenges is that Wyoming is among the most rural of the states.
Development of DOORS
DOORS is the fourth community services funding system that DDD officials have implemented since 1990. During the initial expansion of Wyoming's community service system, the Division managed payments for HCB waiver services by employing conventional rate schedules, overall cost caps, and ad hoc negotiation with provider agencies. However, these funding policies and practices had several unsatisfactory results. DDD officials found themselves engaged in micromanaging the service system from Cheyenne, including conducting close reviews of consumer service plans to ensure cost-effectiveness. This practice, however, was at odds with the central role of the local/individual planning team in developing individual support plans and strategies. Division officials also were concerned that disparities had arisen in payments to community service organizations and that HCB waiver per capita costs were rising too quickly.
These concerns prompted the development of DOORS. Division officials decided that the new funding system should be based on the following principles:
Each person's local/individual planning team should be the primary manager of the dollars available to pay for HCB waiver services and supports. The team should work out the best mix of services and supports to meet the needs of the individual. Only rarely should the Division become involved in decisions concerning the authorization of specific services or second guess team decisions;
The budget mark established for each person should be an overall amount of dollars. The mark should not depend on the exact services selected by the team (because the team should have free rein in working out the best mix of services); nor should it be influenced by which organization(s) currently served or would serve the person (because individuals and families should have free choice among providers). Dollars should be portable. The amount should not change if the person selected another provider. In other words, the mark would be an IRA;
The amount of the IRA would be determined in the same way for all individuals. The method would apply equally to people presently receiving services and individuals new to the system. State officials and stakeholders agreed that funding authorization levels must reflect differences in the needs of individuals and be determined in an evenhanded fashion;
The new system would operate within available funds. In other words, implementation of the new system would be budget neutral.
In short, funding would be reconfigured to firmly place authority and responsibility for managing dollars and services squarely in the hands of the local/individual planning team. Instead of the Division's exercising close oversight of plans to ensure that spending remained within available dollars, the local/individual planning team would have the flexibility to work out the best use of the available dollars. The challenge that confronted DDD officials was how to determine each individual's IRA.
Designing DOORS
Division officials developed the DOORS methodology by conducting in-depth statistical analyses of the current costs of serving the individuals who participate in each HCB waiver program. The aim of this statistical analysis was to develop funding "models" that essentially would reduce or eliminate funding disparities among individuals that had arisen over the years. Statistical methods were used to "normalize" funding levels in each HCB waiver program.
The logic behind the development of DOORS is straightforward, although the underlying statistical methods are complex. Wyoming officials reasoned that the current distribution of resources among HCB waiver participants reflected rational decisions that had taken into account the needs of each individual. While decisionmaking had been carried out more or less consistently over the years, variance had crept into resource allocations. In other words, similarly situated individuals had different resource allocations. If IRAs were to be determined in an evenhanded fashion, this variance would need to be reduced or removed. The process that Wyoming officials followed was to identify factors that, from a policy perspective, should be the principal determinants of resource allocations and recalibrate individual authorizations against such factors. This recalibration process would reduce or eliminate the variances that arose due to other factors. The factors that state officials selected to serve as the basis of the DOORS IRAs were the following:
The HCB waiver services previously authorized for each person. Reflecting such services in the model affirmed that service plans had been developed to address legitimate needs of program participants;
Individual consumer characteristics as measured by the Inventory for Client and Agency Planning (ICAP) instrument. Here the aim was to take into account the characteristics that, on a face validity basis, would affect the intensity of supports that an individual is likely to require;
Economic factors that might affect the costs of serving an individual in one town versus another; and,
Provider agency characteristics that, from an efficiency standpoint, have a bearing on costs.
The goal was to develop a model that would generate IRAs based on the foregoing factors so that the amounts determined would yield the same allocation for similarly situated individuals. To the extent that individuals received different allocations, the difference would stem from the foregoing factors but no others.
It is just as important to point out that various factors were not included in the model. In particular
While the HCB waiver services that a person currently receives are included, their exact location, type and intensity are not. The model does not take into account the size of a person's living arrangement or whether a person may be receiving facility-based or "integrated" day services. The model solely reflects that a person is receiving residential supports, day supports or other types of services. To include the particulars of a person's current services would have worked at cross-purposes with an important principle: it is up to the local/individual planning team to decide on the specific mix of services and supports and how they will be furnished.
Other than provider efficiency measures, the model contains no adjustment for the individual's being served by one provider or another. The model does not calibrate the IRA amount to previous provider-by-provider payments. Not tying the IRA to specific providers and their costs reflects the principle that individuals have free choice of provider. In addition, it is important to keep in mind that DOORS is a system for determining IRAs; it is not a provider agency rate setting tool.
Not including the preceding factors means that they are not allowed to affect the amount of a person's IRA.
The derivation of the DOORS adult and children's models proceeded by applying multiple regression methods to reduce the variance in resource allocations with respect to the factors included in the model. Taking into account the factors that Division officials identified for the model, it was determined that, in the case of adult HCB waiver participants, the factors explained 51 percent of the variance in current resource allocation levels. In other words, there was a significant "residual" or "unexplained" variance in resource allocations that arose from factors other than the ones selected by state officials. Multiple regression methods was used to reduce this residual variance.
The development of the adult model went through nine iterations before it was finalized. In the first iteration, 40 variables were included. Where a consumer characteristic was included but its correlation with costs ran in an unexpected direction (i.e., "face validity" was violated), the variable was thrown out. Other variables also were tossed out to the extent that they did not contribute to reducing the amount of unexplained variance. The statistical methods employed permitted keeping a large number of variables in play all at once in order to continuously weigh the effects of including or excluding one or several variables and pinpoint the variables that would contribute most to the explanation of variance. The final adult models contains 23 variables, including 16 items from the ICAP. The statistical methods employed generate weighting values for each of these variables. In the end, the amount of unexplained variance in resource allocations for the adult waiver was reduced from 49 to 11 percent.
In the case of both the adult and children's DOORS models, the formulas that were developed describe the best statistical "fit" between existing resource allocations and the factors that DDD officials elected to include in the model. In other words, the models statistically describe the resource allocations that would result if all the various factors were taken into account in a consistent fashion for all individuals served. The effect on resource allocations of other factors that were excluded from the models was reduced or eliminated.
Neither of the DOORS models describes the "causes" of differences in the costs of supporting individuals. State officials are quick to point out that "correlation does not imply causality". Explanation of variance methods can be applied to normalize nearly any set of data against any of a wide variety of factors. The statistical analysis that underlies the DOORS models normalized funding on a person-by-person basis against the factors that state officials believed should serve as a legitimate basis for individual resource allocations.
Similarly, the ICAP factors incorporated into each model are not portrayed as "true" determinants of costs. In other words, Wyoming, officials do not argue that they have unearthed the Rosetta Stone that reveals the exact "universal" consumer characteristics that are the root causes behind the costs of serving one individual being higher or lower than another. The factors that are included in each model are those that state officials would expect on a face validity basis to affect costs and which have been determined to contribute the most to reducing the level of unexplained variance in Wyoming's allocations.
It also is important to point out that the ICAP factors included in each model nearly entirely consist of ICAP sub-elements. The aggregate ICAP "service score" is employed in the adult (but not the children's) model as one among a total of sixteen factors. DOORS does not directly translate the ICAP service score into a allocation amount. DOORS does not establish ICAP-based "levels of care" payments. The DOORS IRA amount is uniquely determined for each person, taking into account the factors included in each model. In both the adult and children's models there are non-ICAP factors in each formula. There are differences in the ICAP factors that are included in the children's and adult models, as one intuitively would expect. The children's model includes seven ICAP factors versus the sixteen in the adult model. The adult model includes economic and provider efficiency measures; the children's model does not.
In summary, the DOORS models are based on statistical analysis that normalizes resource allocations by taking into account services that have been determined as needed during service planning, various consumer characteristics and (in the case of the adult model) economic and provider measures to generate resource allocations on a formula basis. The formula ensures such resource allocations will be determined uniformly. The statistical methods aided in sorting out the various factors and assigning proper weights to them.
Operational Features of DOORS
DOORS-generated IRAs are produced in advance of the individual's planning meeting. When the planning team meets, it has the IRA amount in hand. The team's task is to produce a service plan/support strategy within this dollar amount making use of the broad service categories covered in Wyoming's HCB waiver program and other resources/supports that are available. The DOORS method does not dictate the exact services and supports that the team must select. Nor does DOORS include a rate setting methodology for specific providers or service types (see below). The team has an overall amount in hand, works within that amount in selecting services and supports as well as the community organization(s) that will supply them.
The DOORS IRAs are not inflexible "hard" budget limits. DDD has hold back a modest amount of reserve funds to address the needs of individuals when for some reason the IRA amount is not adequate. This reflects a clear understanding that the DOORS IRAs are statistically-based predictions or estimates of resource requirements and, consequently, subject to error. State officials recognize that legitimate problems can crop up in meeting the needs of some individuals within the amount allocated. In addition, DDD officials recognized that the DOORS methodology would not yield reliable IRAs for "outlier" cases. Such cases involve individuals who have very unique service needs that fall outside standard service models and support strategies. The cost of supporting such individuals inherently is difficult to predict and, therefore, cannot be readily described in a "model". In the case of "outliers", funding amounts are determined through "hand work".
As mentioned earlier, DOORS does not include a provider/service rate setting component. Instead, the specific rates paid to providers for billed services are worked out locally between the planning team and the provider (agency or individual). To guard against individuals being charged excessive rates, DDD has established "payment/rate screens".
A concern that arises concerning payment methods that factor in ICAP or similar consumer assessment data is that the assessments will be "gained" in order to generate higher dollar amounts (e.g., the person will be assessed as having more challenges in order to increase funding). In Wyoming, ICAPs are administered independently by state DDD field staff (ten staff members perform this function, although this is not their only responsibility). This is one way to avoid gaming. In addition, the exact ICAP factors that DOORS uses to generate IRAs have been masked. It also is worth pointing out that the factors actually included in each model are among the more concrete sub-elements of the ICAP instrument and thus the most readily verifiable.
The implementation of DOORS is still unfolding. Both the adult and children's models are being phased in as HCB waiver service plans come due for review by local/individual planning teams. Nonetheless, thus far, the results have been encouraging. The volume of cases where decisions are being made in Cheyenne has been reduced dramatically. So far, there have been no appeals of the IRA budget amounts or state decisions regarding requests to change those amounts.
DDD officials also report that DOORS appears to enjoy broad stakeholder acceptance. The system is perceived to be fair and equitable. It informs individuals and families of the amount available in clear terms. It has reduced the suspicion that individuals and families have been treated differently or that some providers have secured more favorable payments than others have. In addition, since DDD officials were able to fully simulate the results of applying the DOORS methodology prior to its implementation, they could identify in advance possible instances where community service organizations might face a significant overall decline in payments once DOORS took effect. They alerted these organizations to this potential problem so that they could begin make necessary operational changes. Wyoming officials decided not to use "circuit breakers" to mitigate the effects of payment changes on provider agencies as a result of the implementation of DOORS.
Wyoming's implementation of the DOORS and the adoption of IRAs is not tied to a formal self-determination initiative. Wyoming does not have an RWJ foundation grant. However, in operation, the IRAs are grounded in the fundamental principles of self-determination and consumer direction.
At this stage, it is still too early to tell what effect Wyoming's use of IRAs is having on per capita costs: namely, whether the flexibility afforded the planning team byway of providing each person an individual budget mark is leading to a reduction in per capita costs overall. The implementation of DOORS is being phased in as individual plans come due for review. Time will tell whether there is a difference in the amount allocated versus the amount actually used. The implementation of DOORS is not tied to a spending reduction plan. However, lower per capita costs would be a welcome result since, for the first time in several years, Wyoming is beginning to experience a waiting list for services and the service system faces flat funding.
It also is too early to tell the extent to which the changeover to IRAs is leading to significant modifications in services and/or the providers that individuals and families are selecting. It has been a long-standing policy in Wyoming that individuals can exercise free choice of provider. DDD officials observe that families with a son or daughter who participates in the children's waiver are more prone to play a proactive role in managing the service plan than many of the families and individuals who receive services via the adult waiver program. This difference may be attributable to the fact that families with children have been involved in early intervention and special education programs. For many individuals served in the adult waiver, the IRA framework is new and both the individuals and their families are feeling their way in this new environment.
Observations
Wyoming's systemwide implementation of DOORS is an important milestone in the use of IRAs in state developmental disabilities service systems. The principles upon which DOORS is based affirm the central role of individuals and families being the primary decision-makers in developing support strategies and making other key decisions. The DOORS IRAs inform individuals and families of the total resources available to them. They place individuals and families in a position of responsibility and authority in crafting support strategies within the funds available.
It is worth pointing out that Wyoming was especially well positioned to make this change. The overall funding available in Wyoming compares favorably to other states. The expansion of the community service system occurred nearly entirely through the HCB waiver program. One outgrowth of this is that the financing of Wyoming's system is more unified than is typical in many other states. Where multiple funding streams are present, they tend to breed disparate payment amounts and hence result in wider variance in per capita costs. When Wyoming's system was in its build out phase, state officials used relatively consistent decision-making rules concerning funding. In combination, these factors eased the implementation of DOORS because state officials did not face the prospect that normalizing the dollars available would result in massive reallocation of resources among consumers.
With respect to the DOORS models themselves and the methodology used in their development, it is important to emphasize their basis in policy. The aim in Wyoming was to normalize resource allocations against factors that had been selected by state officials. The factors that were selected were based on state officials' judgments concerning which among many possible factors should play a role in determining resource allocations. Therefore, the models are policy-based. The models are especially attractive because the factors included have considerable face validity.
The DOORS models are not cost models in the sense that they establish a hard and fast relationship between the factors contained in each model and the costs of supporting a particular individual. Again, correlation does not imply causality. Instead, the DOORS models are "best fit" models. Wyoming officials do not represent that the amounts generated by either model as predictors of the cost of serving an individual anywhere else than in Wyoming. The models are not represented as generating funding amounts that are "adequate" or "appropriate". The amounts calculated are consistent with Wyoming's funding levels and service practices. The fact that Wyoming's overall system funding level has supported the delivery of high quality community services lends confidence that the amounts the models generate is appropriate. Where current funding levels are regarded as especially problematic, there would be vastly less confidence in the amounts generated by the application of a DOORS-like methodology.
It also is important to point out that Wyoming officials were able to construct the DOORS models because the state possessed a comprehensive data base on consumer characteristics (the ICAP has been administered in Wyoming for many years) as well as information concerning current dollar allocations and service use patterns on a person-by-person basis. All this information is computerized and can be analyzed employing PC-based statistical software. To the extent that other states are interested in building models along the same lines as Wyoming, similar information must be available. The methodology is not ICAP-dependent. ICAP data happened to be what Wyoming had in hand to provide a reasonably complete picture of consumer characteristics. The ICAP instrument has known levels of reliability and validity. However, other instruments or sources of information concerning consumer characteristics can provide the necessary data as well.
Lastly, it is worth pointing out that the statistical methods and analysis used in developing DOORS have other possible applications independent of establishing IRAs. For example, the methods may be employed to determine where a state stands with respect to the factors that state officials believe ought to be determinant of resource allocations. The methodology permits measuring the extent to which present allocations deviate from such factors and the effects of reducing such deviations. This type of analysis can be invaluable in evaluating current resource allocations.
For More Information:
Jon Fortune, Adult Services Manager, Division of Developmental Disabilities, WY Department of Health, Herschler Building -- 1st Floor West, 122 W. 25th Street, Cheyenne, WY 82002, Tel: 307-777-6488,E-mail: jfortu@misse.state.wy.us
Jon is happy to share extensive information concerning DOORS and talk with officials in other states interested in conducting a similar analysis.
| This paper is available for Jon Fortune, Adult Services Manager, Division of Developmental Disabilities, WY Department of Health, Herschler Building, First Floor West, 122 W. 25th Street, Cheyenne, WY 82002, Tel: 307-777-6488, E-mail: jfortu@misse.state.wy.us, Web site: http://ddd.state.wy.us |
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