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.
The Easy Read Edition is split into parts. Each part has its own Words to Know section, and there is also a separate Words to Know part with all of the terms from every section. Click on the title of any of the parts below to download it:
- 0. Title and Focus Group Names
- 1. To Start
- 2. What are LTSS? What are institutions and HCBS?
- 3. What do community services mean to people with disabilities?
- 4. Who decides if community services do a good job or not? How do they decide?
- 5. What quality measures are there to tell who’s in control?
- 6. What did ASAN do to try and come up with quality measures?
- 7. The big question: Are staff actually in control of us?
- 8. What were the themes?
- 9. 12 Questions to ask to see who is in control
- 10. What Next
- 11. Words to Know
- 12. To Learn More
You can also download the entire Easy Read Edition of the toolkit by clicking here.
This toolkit was developed thanks to generous funding by the Community Living Policy Center.