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“Who’s in Control?”: Control over community services for people with disabilities

In 1993, Roland Johnson, one of the founders of Self-Advocates Becoming Empowered, gave a famous speech called “Who’s in Control?” In this speech, Johnson talked about how people with disabilities — not our service providers or staff — need to have control over our lives. Medicaid uses quality measures to find out whether someone’s services are good or bad. But how do we measure who is in control?

ASAN talked to a group of self-advocates who get community services. We asked about how we can tell who is in control of their services. Our toolkit “Who’s in Control?”: Control over community services for people with disabilities is the result.

This toolkit answers questions like:

  • What are long-term services and supports?
  • What are institutions? What are home and community-based services?
  • What are quality measures?
  • How do people come up with quality measures?
  • How can we tell who is in control of their community services?
  • What questions should people ask to make sure we stay in control?

“Who’s in Control?” is available in three formats:

  • an Easy Read edition that uses pictures and large text,
  • a Plain Language version without accompanying graphics, and
  • an academic research brief aimed at researchers and professionals.

This toolkit was developed thanks to generous funding by the Community Living Policy Center.

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