Grant improves wellness, preventive care for developmentally disabled

Tamar Heller, director of UIC Institute on Disability and Human Development. Click on image to download. Photo credit: Jenny Fontaine/UIC

The University of Illinois at Chicago has received a five-year, $4.4 million federal grant to find ways to improve wellness and preventive care for adults with developmental disabilities.

The grant, from the National Institute on Disability and Rehabilitation Research, will fund a unique combination of research, training and education, and health promotion projects at UIC’s Rehabilitation Research and Training Center on Developmental Disabilities and Health.

“A lack of focus on wellness and preventive health has placed people with intellectual and developmental disabilities at greater risk for poor health,” says Tamar Heller, UIC professor of disability and human development, the principal investigator on the grant. “There are a multitude of factors that can be described as a cascade of health disparities.”

Two major health promotion projects are one component of the center’s work:

In its Health Matters program, the center developed a variety of tools to help people with developmental disabilities, including peer mentoring, online resources, and train-the-trainer programs.

“This is the only evidence-based health promotion curriculum for adults with developmental disabilities,” Heller said. The grant, she said, will fund scale-ups in three other states, which are translation of research “focused on getting best practices widely used.”

A second health promotion project, POWERS, uses technology to promote healthy behaviors, such as weight loss. This will be the first time the technology is used in the developmentally disabled population.

The center is five years into a large, long-term epidemiological study of health disparities in this population. The longitudinal study involves nearly 2,000 families that include people with intellectual and developmental disabilities.

The study is examining the relationships between health behaviors and health over a period of years — looking at the relationship between what they’re eating, their exercise, and their access and use of preventive health care — and how each of these behaviors relates to their health status over time.

“It’s a big study and the only one of its kind,” said Heller. National data sets don’t currently include such information.

“People with developmental disabilities have high obesity rates and often don’t get needed preventive care. They often develop chronic conditions earlier.

“Knowing whether some of this may be preventable could have an enormous impact on healthcare costs,” she said.

Managed care’s effect on people with disabilities is another area of research for the center, Heller said.

“States are moving Medicaid recipients into this healthcare model. The Center is developing and validating measures for quality of care for people who have cognitive limitations to help insure that this population gets needed care in the new system.”

Outreach and education at the center extends to every level, Heeler said, from peer-to-peer training, to students, to other health care professionals, and to community leaders and legislators.

“We’re interested in making a difference,” Heller said.

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