In the past decade, the field of developmental disabilities has witnessed the emergence of innovative and responsive approaches to supporting people in the community. Family support, supported living, person-directed support services, supported work, and home ownership have become realities for an increasing number of people and their families. Yet public policies and funding mechanisms have often limited the development of these effective forms of assistance. Major sources of funding for developmental disability services have discouraged the development of flexible services and have only recently been used by some states to fund more responsive supports. New health care policies–most notably, the concept of “managed care”–will present new challenges and opportunities.

Managed care refers to administrative controls over the use and costs of services. Managed care approaches are increasingly used to coordinate the delivery of health-related services and short-term medical care. In medicine and health care policy, opinions about managed care remain divided. Some observers believe that managed care holds promise for resolving quality and access problems and controlling the spiralling costs of medical and related services. Others have expressed concerns that managed care shifts decision-making from the local level to remote and impersonal organizations, creates significant access problems for persons with complex and significant needs, and contains inadequate consumer safeguards.

Since many states are moving rapidly to enroll people with developmental disabilities in managed care plans for long-term services and since this approach is largely untested in this area, it is imperative to define the principles and values that must underlie managed care in developmental disabilities.

Whereas:

• Families of children with developmental disabilities should receive the services necessary to maintain their sons and daughters at home.
• Families of children with developmental disabilities should have maximum choice over the nature and types of home and community-based services provided to them.
• People with developmental disabilities should be able to exercise the same degree of choice about where and with whom to live as nondisabled persons in American society.
• Adults with developmental disabilities–with the support of guardians, in exceptional circumstances–should be able to select the agencies or individuals from whom they will receive support.
• Adults with developmental disabilities should receive supports and services based on their individual preferences and choices.
• People with developmental disabilities should have the same opportunities as other American citizens to have homes of their own, meaningful work, and fulfilling personal life styles.

and Whereas:

• People with developmental disabilities, family members, and advocates must be centrally involved in decision-making and planning regarding the administration of services.
• Decisions regarding services and support for specific adults and children with developmental disabilities, or their families, should be made as close as possible to the people being served and, specifically, in the communities in which they live.
• Unmet needs for services for people with developmental disabilities and their families exist in virtually every state and community.
• Neither public bureaucracies nor large private corporations have demonstrated widespread success in administering local services responsive to individual needs.
• Operators of congregate settings and agency facilities have not produced evidence to demonstrate their cost-effectiveness or superiority in the quality and responsiveness of their services.
• People with developmental disabilities and their families are not commodities, and organizations must not be permitted to realize unreasonable benefits from addressing their needs.
• The effectiveness of managed care or health care organizations in administering long-term supports and services for people with developmental disabilities and their families has not been demonstrated.

Therefore, we, as representatives of associations or as individuals, endorse the following principles if and when managed care is implemented:

• Managed care must not be used to limit the supports and services people with developmental disabilities need to live successfully in the community.
• Managed care should discourage placement in congregate facilities and encourage services that support people with developmental disabilities to live in their own homes and to participate in the everyday life of their communities as citizens, workers, and students.
• Managed care must be administered in a manner that permits decisions regarding allowable services to be made in local communities and by people knowledgeable about and chosen by the specific individuals to be served.
• Among the options available through managed care must be subsidies and individual financing options that enable people with developmental disabilities or their families to purchase services from either certified agencies, generic service providers, or private individuals.
• People with developmental disabilities and their families must have access to due process protections and responsive consumer safeguards to challenge decisions regarding allowable services.
• Funding for services under managed care must be sufficient to support people with the most intensive needs to live in the community.
• Cost savings realized through the more efficient administration of services must be committed, first, to addressing unmet needs for long-term support of people with developmental disabilities and their families.
• Managed care organizations must be evaluated by their interest in and commitment to the communities they serve and their sensitivity to the racial and cultural heritage of members of those communities.
• People with developmental disabilities, their family members, and advocates must be involved in all planning and decision-making regarding the implementation of managed care.
• Proponents of managed care must demonstrate the benefits of this approach in terms of accessibility, quality, and responsiveness of services and the achievement of cost-containment goals.

Developed by the Center on Human Policy at Syracuse University, Putting People First, a national project funded by the Robert Wood Johnson Foundation and the Institute on Disability at the University of New Hampshire, and Responsive Systems Associates, 1996. Please feel free to reproduce this statement.