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PEOPLE FIRST: THE CONSUMERS IN CONSUMER DIRECTION

By: Marisa A. Scala and Thomas Nerney

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" (National Institute of Consumer-Directed Long-Term Services, 1996). 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 an 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 disabilites 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.

People with Physical Disabilities

The very foundation of consumer direction lies in the independent living movement led by individuals with physical disabilities during the 1960s and 1970s who demanded their rights to be full participants in mainstream society and to live independently in their communities. The premise behind the independent living model is that people with disabilities are hindered or impaired by barriers in their environment rather than by their physical or cognitive disabilities. One crucial barrier for people with disabilities has been a lack of appropriate long-term-care services, specifically personal assistance services. (Litvak, Zukas, and Heumann, 1987; Batavia, DeJung, and McKnew, 1991).

More commonly known as home-and community-based services within the field of aging, personal assistance services include assistance with personal care, instrumental activities of daily living, communication, and paramedical needs like administering medication, as well as home modifications, case management and other similar supports, and assistive technologies (Doty, Kasper, and Litvak, 1996). The term personal assistance services has gained more widespread acceptance among younger adults with disabilities because it implies that services can be delivered outside as well as in the home, in schools, and on the job. The term also suggest more of a social, rather than medical, model of service delivery Without argument, one of the most critical needs of younger adults with disabilities in relation to consumer direction and self determination is access to and funding for personal assistance services. Personal assistance services are so critical because they enable individuals with disabilities to lead active, independent lives-that is, to go to work and to school and to participate fully in society. Disability rights advocates and others in the independent living movement have long mistrusted the current long-term care system in the United States because of its reliance on a medical model of service delivery and its bias toward institutional care (Litvak, Zukas, and Heuman, 1987). Instead, they advocate for services in the most integrated settings (as required by the Americans with Disabilities Act) and for service funding that follows the person, rather than the provider, as evidenced by the development of the Medicaid Community Attendant Services and Supports Act, which offers Medicaid-eligible people with disabilities the option of choosing "community attendant services and supports" rather than placement in a long-term care facility (Kafka, 1999).OLDER PEOPLE

While consumer direction has a long history among younger adults with disabilities, it has been much slower in coming to the field of aging services, only gaining prominence within the past several years. The overarching goal of home and community based services in the United States has focused on keeping older people out of nursing homes as the means of promoting independence and autonomy, and the bias of the current system has reflected the assumption that all elders are frail, dependent, and in need of protection. But also mixed in with such assumptions and biases are some very real concerns about balancing autonomy and risk and about quality assurance and fraud and abuse (Scala and Mayberry, 1997).
Despite these concerns, however, consumer direction has expanded within aging services in recent years because of worker shortages, the need to cut rising long-term care cost, and a desire to provide services that are more suited to consumers' individual needs and preferences (Simon-Rusinowitz et al., 1997). A 1996 National Council on Aging survey of state administrators, providers, consumers and caregivers identify 103 consumer-directed programs throughout the United States (Lagoyda et al., 1999). However, in contrast to the independent living movement, the trend toward consumer direction in aging services has been spearheaded by professionals in the field, rather than by consumers.

Several strategies can enhance consumer direction and self-determination among the aging population. One critical support needed for elders in consumer-directed programs is training-training in service responsibilities (e.g., recruiting and hiring workers or quality assurance), self-advocacy, and self-care. (Eustis 1999). It is unreasonable to expect people in such programs to take on theses responsibilities without offering them some information and resources (whether through face-to face or phone interactions or, at the very least, written materials) to prepare them. Also important are what are often called supportive intermediary services, which can offer consumer assistance with their responsibilities, if needed. This help may include assistance with payroll and taxes for workers, care management services, help with recruiting personal assistance, and back ground checks on workers.
Finally, there is a need for flexibility in consumer-directed programs to accommodate issues of surrogacy. Within home-and community-based programs for older adults, many times it is family members who either collaborate with older family members in decision making or who make decision on behalf of older relatives, because of delegation of that authority or because the services recipient has severe cognitive impairments. Programs must be flexible enough to allow for such arrangements.

PEOPLE WITH DEVELOPMENTAL AND COGNITIVE DISABILITIES

The first formal demonstration of self directed supports with population of individuals with cognitive disabilities (mental retardation and acquire brain injury) occurred in an early 1990s project funded through the Robert Wood Johnson Foundation's Building Health Care System initiative and based at Madnadnock Developmental Services, Inc. a regional authority in New Hampshire. At the time, self-direction was not a common term among those with cognitive disabilities. Later, the notion of self-direction or self-determination grew out of a recognition that, no matter the disability, having control over major aspects of one's life was just as important to those with intellectual disabilities as it was for any other person with a disability.

Because the system of typical services to these populations was so dominated by congregate models of care, the four principles of self-determination-freedom, authority, support, and responsibility-were articulated to guide implementation issues. Unlike more typical self-directed supports, the self-determination approach relied on the creation of formal system requirements in order to ensure that individuals with significant cognitive disabilities could also take advantage of the authority and the responsibility that accompany this freedom.
In this vision of self-direction, it is critical that those who need assistance in decision-making indicate the people they trust for this assistance, regarding where they want to live and with whom(Nerney and Crowley, 1994; Nerney and Shumway, 1996). The importance of support networks or "circles" seem crucial to success for many individuals with cognitive disabilities. Members of these circles must be individuals freely chosen by the person with a disability, and they must have a trusting and respectful relationship with that person.

Two relatively innovative assumptions are beginning to undergird the self-determination movement for individuals with cognitive disabilities. One is simply that all people will "have their own place". People with disabilities may indeed choose to live with another person for companionship or to share living expenses, but that is always a freely chosen situation and one susceptible to renegotiations when necessary. The second assumption is that virtually all individuals can work in meaningful employment or produce income through the development of microenterprises. More and more projects across the country are gradually changing the goal from "getting a job" to one of "producing income". This shift emphasizes the idea that there are many ways to both secure employment and start a small business. Within their budgets and with assistance from a variety of sources, individuals can contract directly with employers for coworker support, transportation, and even training. Individual budgets can be used to help secure or pay down the cost of equipment necessary for a small microenterprise.

In order to achieve true self-determination, there are three critical supports that people with cognitive or developmental disabilities need. These are individual budgets, support brokering and fiscal intermediaries Individual budgets. Individual budgets reflect the principles of self-determination when the budget is actually controlled by the person and his or her support circle. Public dollars should be viewed as an ongoing investment in the person's live, and the obligation to be responsible as well as contribute to one's community becomes part of the budget development. These budgets must be individually created by the person with a disability and his or her support circle within the amount of funding allocated to the individual for support and services. This includes the creation of unique line items that reflect the distinct dreams and ambitions of the person with a disability. Budgets must also be flexible; that is, within approved amounts, individuals should be able to move dollars from line item to line item (as well as create new items and eliminate old ones) as long as the essential supports as maintained. Finally, people with disabilities must retain their social support network, even is another organization assumes some legal responsibility to become the employer of record.

Independent support coordination. The linchpin to the success of creative, highly individual budgets and life plans is the function that is variously referred to as independent support coordination, personal agents, or independent brokering. The support coordinator is a person who may help with plan development, assist in organizing the unique resources that a person needs and even assist with ongoing evaluation of these supports. There are many ways that this function can be carried out, from family members to case managers assuming new roles. Several places now allow the person with a disability to select anyone they know and trust and pay the person separately, if necessary. The characteristics of an independent brokering function include independence from service provision, to avoid both the appearance and the reality of conflict of interest, and real authority from the state or publicly sanctioned authority to adequately represent the person with a disability (although again, it should be clear that the person who carries out this function works for the person with a disability).

Fiscal intermediaries.

Fiscal intermediaries are simply organizations, places really, where an individual budget gets parked or banked. The functions carried out by a fiscal intermediary include, but are not limited to, check writing for all bills and personal costs, tax withholding, paying worker's compensation, health insurance, and other tax and benefits that might be appropriate depending on the individual's budget. The fiscal intermediary works for the individual and remains accountable for ensuring compliance with all federal and state laws. Ideally, fiscal intermediaries should keep individual budgets isolated from any other and certainly from traditional provider contracts. They must also have no other duties that conflict with their role and must be independent of service provision. Finally, fiscal intermediaries, to the extent possible, should be generic neighborhood community organizations that enable the person with a disability to create relationships with personnel who work there in regular community settings. The closer this function moves to a "neighborhood bank," the better for the person with a disability.

IMPLICATIONS AND CONCLUSION

Consumer direction and self-determination have gained prominence in recent years in the field of long-term care. We have witnessed increased commitment from funders such as the Robert Wood Johnson Foundation through the Cash and Counseling and Independent Choices initiatives, and even from legislators through the introduction of the Medicaid Community Attendant Services and Supports Act in 1998 more recently, the Supreme Court decision on L.C. & E. W. v. Olmstead has prompted states to examine the issue of consumer direction more closely.

As we examine the histories of three of the populations that have been involved in the movement toward consumer direction and self-determination, it becomes clear that autonomy and control are of paramount importance, no matter what a person's age or disability. It should also be mentioned that the populations described in this article are by no means the only groups involved in and affected by this movement. Youth, families, and people with psychiatric disabilities are also integral parts of this growing contingent.

Lessons for policy makers, program administrators and advocates are implicit in these descriptions as well. First, there is more to consumer direction than simply hiring, firing, and paying one's workers. Consumers must have adequate information about the service systems in which they participate, and as the self-determination movements shows us, they must be given the opportunity, the supports, and the authority to make decisions about their services and how (and by whom) they are provided. Consumers-older and younger-can also play vital roles in monitoring and improving the quality of the services they receive, since they deal with their workers or assistants on a daily basis and are on the frontline when problems occur.

Second, the diversity among consumer populations indicates the need for flexibility in programs. Support programs must respond to needs of individuals, rather than having a "one size fits all" approach to the provision of services. A range of models and supports are needed so that consumers may choose their desired level of responsibility. Some consumers may wish to handle all aspects of service management. Others may wish to deal with a limited number of those responsibilities, or they may want to delegate that responsibility to others whom they trust. Programs must accommodate these consumer preferences as much as possible and must provide training so that consumers of all ages are prepared to handle their authority and chosen responsibilities.

Finally, individualized funding that follows the person, rather than the provider, is long overdue in the world of long-term care. As the experiences of all of the populations described-and indeed, recent legislation and court cases illustrate-consumers must have access to services and supports in the settings of their choice-their homes, schools, and workplaces. It is only when this happens that consumers will be able to exercise true choice, which is the foundation of consumer direction and self-determination.

Marisa A. Scala is a research associate, Institute for the Future of Aging Services, American Association of Homes and Services for the Aging, Washington, D.C.

Tom Nerney is president, Center on Self-Determination, a national technical assistance and training center hosted by Community Living Services, Wayne, Mich.

REFERENCES

Batavia, A. I., DeJung, G., and McKnew, L.B. 1991. "Toward a National Personal Assistance Program: The Independent Living Model of Long-Term Care for Persons with Disabilities." Journal of Health Politics, Policy and Law 16(3): 523-45.
Doty, P., Kasper, J., and Litvak, S. 1996. "Consumer Directed Models of Personal Care: Lessons from Medicaid." Milbank Quarterly 74 (3): 377-409.
Eustis, N.N. 1999. "Strategies to Enhance Consumer Direction and Self-Determination for Seniors." Paper prepared for the 1999 National Leadership Summit on Self-Determination, Consumer Direction and Control, Bethesda, Md.
Kafka, B. 1999. "ADAPT Campaign for Real Choice Self-Determination for People with Disabilities." Paper prepared for the 1999 National Leadership Summit on self-determination- Consumer Direction and Control, Bethesda, Md.
Lagoyda, R., et al. 1999. Survey of State Administrators: Consumer-Directed Home and Community-Based Services. Washington, D.C.: National Council on the Aging.
Litvak, S., Zukas, H., and Heumann, J.E. 1987. Attending to America:
Personal Assistance for Independent Living. Berkeley, Calif.: World Institute on Disability.
National Institute of Consumer-Directed Long-Term Services. 1996. Principles of Consumer-Directed Home and Community Based Services, Washington, D.C.: National Council on the Aging.
Nerney, T., and Crowley, R. 1994. An Affirmation of Community. Durham, N. J.: University of New Hampshire Institute on Disability.
Nerney, T., and Shumway, D. 1996. Beyond Managed Care: Self-Determination for Persons with Developmental Disabilities. Durham, N.H.: University of New Hampshire Institute on Disability.
Scala, M.A., and Mayberry, P.S. 1997. Consumer-Directed Home Services: Issues and Models. Oxford, Ohio: Scripps Gerontology Center.
Simon-Rusinowitz, L., et al. 1997. "Determining Consumer Preferences for a Cash Option: Arkansas Survey Results." Health Care Financing Review 19 (2): 73-96.

Printed with the permission from the authors and Generations

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