Learning how to improve health empowers people with disabilities

Maria* was critically injured in an act of domestic violence. Bradley,* a veteran, returned from Iraq with spinal cord and traumatic brain injuries.

Both turned to their local Center for Independent Living (CIL) for help navigating the world. Nonprofit CILs provide advocacy and services for people with disabilities, who are considered “consumers” of those services.

Through their CIL Maria and Bradley joined a research intervention conducted by the Research and Training Center on Independent Living called Health Access for Independent Living (HAIL) funded by the National Institute on Disability, Independent Living and Rehabilitation Research.

“HAIL addresses the fact that people with disabilities are often less healthy than people without disabilities and more likely to have a chronic condition like diabetes,” said Jean Ann Summers, research professor. “People with disabilities can be healthy, though, if they have equal access to health information and health- promoting activities.”

“The goal of HAIL is to empower consumers by giving them knowledge and skills to manage their own health and health care,” said Dot Nary, assistant research professor. “Since CILs are trusted advisors for people with disabilities, they are a perfect partner for our work.”

The HAIL team of Summers, Nary, Aruna Subramaniam and Alice Zhang built an online database that provides users with options for treating common health problems, plus information on skills

for managing one’s health care, such as talking to a doctor (see hail.ku.edu). Then the research team trained CIL staff members to use the HAIL process with consumers who learned to set short- and long-term health goals.

For the participants in this pilot project, HAIL netted measurable results. Maria reached her goal of standing brie y and dressing herself. Bradley reduced his use of pain medications and exercised more. The experience empowered another consumer to say, “HAIL gave me the motivation. Now if I feel I’ve hit a plateau, I have the con dence to go back and nd new ideas.”

Just as important, CIL staff members who took part in the research were able to integrate health information into the support they already provide consumers. A staff member from the Three Rivers CIL in Wamego, Kansas commented, “This is going to go well with people with disabilities who will want to stay home instead of entering an institution.”