Freedom for All Includes Those with Disabilities

National leadership summit on self-determination, consumer direction, and consumer control among people with disabilities

In 1999, the Center on Self-Determination of the Oregon Institute on Disability and Development at Oregon Health Sciences University, Portland, supported a 120-person summit conference.

The conference aimed to develop a national consensus agenda to advance self-determination and consumer direction among people with disabilities of all ages, ethnic backgrounds, and disabilities.

Current policy and research initiatives involving self-determination describe their goals variously as autonomy, independent living, consumer direction, and consumer control. However, there has been no consensus on how the concept is defined among people with different disabilities and among various age and ethnic groups.

Key Results

  • The summit took place October 22–23, 1999 in Bethesda, Md. Supported by 15 organizations and agencies (see the Appendix for a list of sponsors), the summit was organized as an activity of the Alliance for Self-Determination, a cross-disability coalition of leaders focused on research, policy, and training in self-determination.

    Representatives of key federal agencies, including the Health Care Financing Administration (HCFA) — which administers Medicare and Medicaid — and the Presidential Task Force on the Employment of Persons with Disabilities, also attended.
  • Twenty-one brief papers that were commissioned for the summit summarized current knowledge related to the objectives and identified draft recommendations. The summit included brief presentations, roundtable discussions, and a large group deliberation on the draft recommendations. The participants formed a consensus on several issues related to self-determination:
    • Self-determination is a basic human and civil right for all, involving real choice and control.
    • People of all ages have the right to rich experiences, learning opportunities, and freely given relationships.
    • Individuals with disabilities should run their own lives and control their own money, services, and assistance.
    • Roles of individuals and family members must be clarified, and self-determination must include economic justice, including a living wage and access to capital.
  • Conference participants drafted principles of self-determination: freedom, authority, support, responsibility, and individual-family self-determination partnerships.

    Summit leaders developed the following recommendations and action steps:
    • Define common principles of self-determination. Summit attendees agreed on the need to adopt a vision of self-determination that takes all points of view into account and is based on principles of freedom, authority, support, and responsibility, including no forced treatment.
    • Advance self-determination in public policy. Leaders agreed on the importance of participating in the political process, building coalitions, developing leaders, and initiating laws.

      They recommended review of existing statutes, funding policies, and procedures based on self-determination principles. They also urged HCFA to eliminate discrepancies in Medicaid policies as they apply to:
      • Self-determination, including increased access to personal assistance services for all disability groups.
      • Enabling people to control the dollars necessary for their support.
      • Supporting policies that fund people (not programs) and end institutional bias and promote community-based services.
    • Disseminate the principles and practices of self-determination. Summit participants recommended various ways to develop strategies for advancing self-determination. They also agreed on the need to conduct a public education self-determination campaign, with materials for families and curricula in schools.
  • The organizers posted summit documents on the Oregon Health Sciences University Center on Self-Determination Web site, including summary proceedings, commissioned papers summarizing current knowledge on self-determination, and an overview of the key issues and recommendations arising from the summit.

    Organizers distributed these materials to more than 200 people, including participants, agency representatives, and congressional aides. Many disabilities organizations published articles on the summit.
  • Following the summit, organizers disseminated a pamphlet that summarized the meeting's issues and recommendations and put forth draft principles for self-determination and for building partnerships among individuals and families. Workgroups convened by teleconference and are generating products related to specific conference action steps. The summit increased (by 20) the number of organizations in the Alliance for Self-Determination.

Funding

The Robert Wood Johnson Foundation (RWJF) funded the conference with a grant of $29,989 between May 1999 and February 2000.

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