Researchers will study Affordable Care Act's effects on people with disabilities

LAWRENCE — University of Kansas researchers are part of a $2.5 million grant project to examine the Affordable Care Act and its effects on the United States’ largest minority population: individuals with disabilities.

The Collaborative on Health Reform and Independent Living, known as CHRIL, will take a five-year look at the ACA, whether it provides insurance to more individuals, how it affects independent living, employment, access to services, employment and other factors. Funded by the National Institute on Disability, Independent Living and Rehabilitation Research of the U.S. Department of Health and Human Services, the project will focus on translating research into knowledge and advocacy for individuals with disabilities.

“We were interested in looking at the effects of the ACA on several different populations, but especially on people working age, 18 to 64, because they’re typically the ones who rely on employer-provided insurance,” said Jae Kennedy, professor and chair of Washington State University’s Department of Health Policy and Administration and principal investigator of the grant. “People with chronic conditions were previously locked out of the private insurance market.”

Jean Hall, director of the Institute for Health and Disability Policy Studies, a collaboration between the Life Span Institute and the Department of Health Policy and Management at KU Medical Center, and Noelle Kurth, senior research assistant at the LSI, will lead KU’s involvement. They will oversee project 1 of 5, which will examine health insurance outcomes for people with disabilities.

In the first year the KU project will directly assess consumer-reported experiences before and after ACA implementation. To do so, the project will collaborate with the Urban Institute and use data from its Health Reform Monitoring Survey to understand baseline conditions for individuals with disabilities just prior to and shortly after ACA’s implementation. In years two and four, researchers will conduct interviews to more fully document users’ personal experiences. In years three and five, they will conduct a national survey to assess long-term experiences and outcomes.

Through a series of targeted research questions, the program will document the experiences of working-age adults with disabilities in getting and maintaining health insurance and determine the influence of insurance on health care access, community living, employment and integration.

“Using the HRMS data allows us to capture near real-time insights into the ACA experiences of people with disabilities,” Hall said. “Large federal surveys usually have at least a one-year lag between administration and availability of data. That lag is cut to just a few months with the HRMS.”

Additional projects in the collaborative will examine health insurance training and technical assistance needs of Centers of Independent Living, trends in health insurance coverage and health care access for working-age adults with disabilities and costs of health insurance and health care for the same population.

KU researchers will partner with institutional members Washington State University, George Mason University, Independent Living Research Utilization and the Urban Institute.

A major focus of the collaboration will be translating research findings into knowledge relevant constituencies can use. Throughout the five-year project, researchers will prepare a series of webinars, training sessions, fact sheets and presentations on the findings, and how advocates and individuals with disabilities can better navigate the ACA and related services. Researchers will also study how the legislation affects the insurance marketplace and independent living opportunities for working-age individuals with disabilities. For example, researchers will be able to compare results from states that have and have not set up insurance marketplaces and states that have and have not expanded Medicaid.

“The timing, in terms of a natural experiment, of the project is exciting,” Kurth said.“I don’t think anyone has taken a look at the impact of the ACA on this scale, and it is important to study it from the beginning and see how it affects people with disabilities.”

While millions of Americans have gained health insurance through the ACA, there are still approximately 18 million adults age 18 to 64 who are limited or unable to work due to a disability, many of whom don’t have access to employer-based insurance. The same population is much more likely to be in fair to poor health and are more than twice as likely to be below the poverty level, and even though they have less access to care, their average health care expenditures are four to five times higher than individuals without disabilities, CHRIL researchers said.