Expansion of the Affordable Care Act in 2014 improved access to insurance and represented gains in health care for adults with disabilities. But while those gains were documented, what wasn’t known was what challenges still existed in accessing care for that population. A new study from the University of Kansas documents the challenges adults with disabilities still face in accessing health care and offers recommendations to improve care and accessibility.
Researchers in KU’s Institute for Health & Disability Policy Studies conducted interviews with 22 adults with a variety of disabilities and health insurance types about barriers they faced in accessing health care after the expansion of ACA coverage. They found challenges exist in five major areas:
- Information and understanding of coverage
- Out-of-pocket expenses
- Prescription medications
- Provider networks
- Transportation
“We want to make it clear this is not an indictment of the Affordable Care Act. The ACA has expanded coverage for many, but that said, we want to look at what barriers still exist and what can still be improved,” said Jean Hall, institute director and one of the article’s authors.
Co-written by Noelle Kurth and Sarah Smith of KU and Gilbert Gimm of George Mason University, the study is forthcoming in the Disability and Health Journal.
The individuals interviewed provided a sample of American adults from across the U.S. with different types of disabilities and coverage provided by Medicaid, private insurers, the ACA marketplace and other sources.
Nearly all reported trouble accessing information and understanding their coverage. A longstanding problem, the Affordable Care Act didn’t change that for many respondents. Some reported confusion when switching from Medicare or Medicaid to private insurance about which doctors were in their networks or what services were covered. Information could be hard to find, and it was often incorrect. Studies have previously found more than half of private insurers have incorrect or out-of-date information regarding providers on their websites.
Other individuals reported being referred to see specialists, even if they were not part of their plan’s network. That was part of the also longstanding problem of out-of-pocket expenses. Problems existed even when specialists or other services were covered.
“People with disabilities have to see specialists more often, which adds up in out-of-pocket expenses,” Hall said. “That’s an extra burden for people who tend to be in lower-income brackets to begin with.”
In terms of medications, numerous respondents reported not having all of their medications covered, having co-occurring conditions that require different prescribed medications or being prescribed medicines that contraindicate each other. The result of some being covered and not others, or confusion on which were needed, often led to people being forced to choose which medicine to go without or having to pay for needed prescriptions on their own. Appeals processes do exist, but they can take a long time to resolve, which is compounded by going without a medication, Hall said.
Transportation was one of the most frequently reported issues. Numerous respondents reported having to travel long distances to see their doctor. One respondent in Alaska was forced to travel out of the state to find an in-network provider. Others had to take time from work to travel several hours, and others were unable to drive because of their disability, requiring a second person to come with them, all of which added to the time required and financial strain resulting from travel.
“There was one woman who reported she not only had to travel to her doctor but had to pay for parking each time she had an appointment. That may not seem like much, but it adds up and made it hard for her to be able to afford the travel,” Hall said. “And if you need another person to travel with you, either to drive or to provide assistance, that adds to the difficulty.”
The authors make several recommendations for policy to address the issues individuals with disabilities face. While Medicaid is required to cover transportation for people with disabilities for non-emergency visits, several problems still exist. Encouraging insurers to provide travel vouchers could help address the problem, the researchers argue. Requiring insurers to have up-to-date information and either penalizing those who don’t or providing incentives for those who do could help address confusion in coverage, while moving to coverage of medications known to be cost-effective and lowering co-pays and out-of-pocket costs to ensure they are available when needed would help as well, they write.
All of the barriers not only had negative effects on the individuals’ health, access or finances, they also influenced whether they were able to continue working. Being unable to work, earn income and keep insurance can all negatively affect health and well-being as well.
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