Organization Promotes Self-Determination for People with Disabilities Through Its Regional Affiliates

Building self-determination capacity among people with disabilities

From 1997 to 1999, Self-Advocates Becoming Empowered, a Nashville, Tenn.-based organization promoting greater self-determination for its developmentally disabled members, fostered collaboration among representatives from its nine regional affiliates, allowing them to share lessons learned in promoting self-determination and in using self-determination as a principle to reform state policy.

Key Results:

  • Project staff developed a website which includes links to other pertinent sites, resource materials and an on-line newsletter.
  • Project staff developed, and for approximately two years operated, a toll-free telephone number that helped to update members on ongoing campaigns in various states, including efforts to close state institutions for the developmentally disabled.
  • The organization helped develop training materials called the Self-Advocacy Tool Kit and a video entitled Tools for Building a Self-Advocacy Group, which it provided to the 42 state Self-Advocates Becoming Empowered chapters. Additional copies of the training packet and video are expected to be sold separately to groups such as state developmental disability agencies, local self-advocacy groups and professionals in the field.
  • The grant also funded transportation for some of the organization's 18 regional representatives—two from each of its nine regions—to attend quarterly Self-Advocates Becoming Empowered meetings around the country.
  • Project staff developed leadership skills among self advocates, who used those skills to work with state policy-makers who had received grants from the national program office of the Robert Wood Johnson Foundation's (RWJF) $5-million national program, Self-Determination for Persons with Developmental Disabilities, to help states implement a more cost-effective system while simultaneously allowing families and persons with developmental disabilities more choice in determining the services received.

    The program includes both financial and technical assistance to 18 states that are making significant changes in their Medicaid programs' long-term support systems to accommodate people with developmental disabilities. One of the key goals of the program is to make certain that people with developmental disabilities have a voice in how decisions are made in changing state Medicaid systems, and to empower them to come together and learn from each other.

    Several states used some of their funds from the national program to support self-advocacy groups or pulled out state dollars from other sources to fund these groups, according to the national program director of Self-Determination for Persons with Developmental Disabilities.

SABE also received a three-year grant in October 1999 from the federal Administration on Developmental Disabilities (in the Administration for Children and Families, US Department of Health and Human Services) to assist grassroots leaders from the self-advocacy and family movements in learning how to get more people involved in self-determination at the national level.