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’s new toolkit “Who’s in Control?”: Control over community services for people with disabilities explores this question.

For this toolkit, ASAN brought together a group of self-advocates who use home- and community-based services, to discuss how to measure who is in control: the person receiving services, or their staff? “Who’s in Control” explains the common themes in our discussions, and suggests 12 questions that researchers can use to make sure people with disabilities are in control of our own services.

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?

People with disabilities need to be in control of our services — and we need more ways to measure who is in control. We hope researchers will learn from self-advocates when developing measures on this critical topic.

Autistic Self Advocacy Network

PO Box 66122
Washington, DC 20035

 

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