The Association of University Centers on Disabilities (AUCD) is looking for personal stories

The Association of University Centers on Disabilities (AUCD) is working with other disability organizations to ensure that long-term services and supports are included in health care reform. One important bill we are advocating for is the Community Choice Act. This would require states to provide Medicaid community-based personal attendant services and supports. It would help correct the institutional bias. It would provide Americans with an equal choice of community-based services. It would also help address waiting lists.

Senator Tom Harkin’s office has asked for assistance. They need personal stories that can help make the case of why long-term services and the Community Choice Act should be included in health care reform. They especially would like stories from the developmental disabilities community.

• Are you caring for a family member or family members who need long-term services?


• Are you an aging caregiver concerned about future services?


• Do you have out-of-pocket expenses for long-term services that are difficult for your family?


• Has providing care impacted your employment?


• Are you on a waiting list for Medicaid home and community-based long-term services?


• How long have you been waiting?


• How long is the waiting list?


• Have you ever had to move or become poor to get the long-term services you need?


• Have you experienced the “institutional bias” in Medicaid?


• Live or at one time lived in an institution or nursing home?


• Only had a choice of nursing home of institutional placement?

There is no set format, but try to keep the stories short (about a page is good). Details are good. Make sure to include your name and what state you live in. They should make the case of why long-term services and the Community Choice Act should be part of health care reform.

We did something similar to this during passage of the Family Opportunity Act. We got a lot of great stories that helped Senator Kennedy’s staff. Please share your stories and help pass on through your Consumer Advisory Councils. Health care reform is moving very quickly so we need stories as soon as possible. Send them to Joe Caldwell at AUCD.