A Washington State University researcher will lead a $2.5 million examination of the federal Affordable Care Act's impact on what may be the largest group in need of its services: people with disabilities.
"Their service needs are different and their health needs are more intensive," said Jae Kennedy, professor and chair of WSU Spokane's Department of Health Policy and Administration. "There's a lot of reasons why this is an important population to study and make sure that the legislation is living up to its promise."
While many of them reject the term, people with disabilities have been called the nation's largest minority. Some 57 million Americans have a disability, by the U.S. Census' definition. More to the point, said Kennedy, "Disability affects nearly all of us at some point in our lives, usually towards the end but often earlier."
More than 18 million working-age Americans have health conditions that limit or prevent them from working, cutting them off from employer-based health insurance. Before the ACA, high costs, exclusions for pre-existing conditions and other barriers made the individual private insurance market inaccessible, forcing many onto public health insurance like Medicare and Medicaid. In a long-running Catch 22, those programs have in turn kept many from returning to work, said Kennedy.
He noted that a lack of health insurance threatens the mental, physical and economic well-being of all Americans. But the problem is worse for adults with disabilities, he said. They have more limited resources and higher healthcare needs.
Two out of three lacking insurance routinely put off getting medical care to save money, worsening their health. Nearly 3 million people with disabilities were uninsured in 2013, the year before the ACA was fully implemented.
In a 2012 perspective article for the New England Journal of Medicine, Kennedy and Elizabeth Blodgett, a WSU research scientist, said the act has several reforms that could help. Extending parents' health insurance coverage to children up to age 26 could encourage young adults to enter the workforce. Eliminating lifetime caps on insurance payouts could make private insurance more attractive, and removing exclusions for pre-existing conditions could open the private market to many with chronic illness and disability.
But Kennedy also sees possible problems, like the effect of cost-containment on essential services and support to help people make choices. People with cognitive issues could have difficulty making decisions on plans, costs and coverage. Preliminary findings show insurance rates have dropped in the wake of the act, but it's unclear if they have dropped for people with disabilities as well, he said.
Kennedy will serve as the principal investigator of the five-year project, which is funded by the National Institute on Disability, Independent Living and Rehabilitation Research, an arm of the U.S. Department of Health and Human Services. He and Blodgett will work with researchers at the University of Kansas, George Mason University and the Independent Living Research Utilization program at TIRR Memorial Hermann Hospital to track changes in health insurance coverage, health care access, use and cost for working-age adults with disabilities.
Kennedy has been involved with disability issues since the late 1980s when he answered a newspaper ad for a job at the World Institute on Disability.
"In the first interview, I was the only person who wasn't in a wheelchair," he said.
He was hired by two of the institute's co-founders, Judy Heumann and Ed Roberts. The first student with severe disabilities to attend the University of California, Berkeley, Roberts went on to launch the Independent Living movement, which fights to give people with disabilities the life choices they have long been denied by employers, government agencies, health care providers and society at large.
"The disability movement is saying, 'You work for us, you doctors, you nurses, you rehabilitation counselors," said Kennedy. "'You are trying to help us live our lives to the best of our abilities but you're not in charge of it. You can't tell me what I can and can't do.' "
The ACA, he said, has aspects of care coordination and care management that "could potentially erode some of the freedoms that some people with disabilities currently enjoy. There's reason to be skeptical. A lot of other so-called reforms haven't benefited important segments of the disability community."
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