Sarah Smith MA, Jean Hall PhD, Gilbert Gimm PhD, Noelle Kurth MS
Background
While health reform has expanded health insurance coverage for millions of Americans, people with disabilities continue to face numerous barriers to accessing and receiving health care. During the summer of 2017, CHRIL staff at the University of Kansas conducted telephone interviews with a diverse national sample of 22 working-age people with a range of disabilities and coverage types (employer-sponsored, Medicaid, Medicare, marketplace plans and no insurance) to document their experiences with health insurance and obtaining timely access to health care services. During the interviews, participants were asked if they wanted to share any insights or suggestions with policy makers. This brief documents these personal perspectives on barriers to care and suggestions for improving health coverage for Americans with disabilities.
Barriers To Care
Even when working-age adults with disabilities have insurance, they may not be able to access the care they need to remain healthy and active in their communities. Out of pocket costs, limited provider networks and gaps in coverage were all cited as problems by participants. Because people with disabilities often have a complex array of medical needs, even small disruptions in their health care can result in serious exacerbations in their conditions, leading to greater costs in the long run.
“It’s very difficult to get health care and even when you have access to things it doesn’t mean that you can actually afford them or reach them. I have health care being provided, but… if I have to go two hours away in order to get it, that may not be possible, especially if I am working.”
“It’s just horrible to be in a situation where I can’t afford the surgeries that I need and the fact that I can’t get all the prescription medications that I need.”
“Anything outside of basic office visits I have to meet the deductible before they start covering it. I need physical therapy, it’s $275 a visit and then if I meet my deductible it’s $25 or $35 per visit. Last year I spent over half of my income on medical care. That’s why I work, to pay medical bills.”
“If the insurance companies want me to stay healthy and not use their services so much, they have to make it so I can afford the meds, and stay working…If I don’t get the medication, I can’t work, then I’m back on the state paying for everything.”
Health Care Reform
Participants expressed generally positive sentiments about the reforms introduced under the Affordable Care Act (ACA), but some consumers suggested that further policy reform is needed. Others were deeply concerned that beneficial ACA provisions would be repealed.
“Peoples’ health is not something that you should put a price on.”
“Please don’t get rid of [the ACA], because peoples’ lives depend on it. But also can you …do away with it and give us universal health care?”
“If they roll back the ACA, then you’ve got the pre-existing condition exclusions, you’ve got the rescission of policies, you’ve got annual lifetime caps, all those things that we’re protected against now. And then if we have block grants or per-capita caps, less people will be eligible, there will be caps, people will be waitlisted again and it will even affect Medicare, you know? Privatization or vouchers will affect Medicare. So it’s like ‘please don’t change anything!’”
“If [my state] had accepted the [Medicaid] expansion, we would be covered and I would be seeing a doctor and I probably wouldn’t have landed in the ER and almost died.”
“People with disabilities are in desperate need for the subsidized health care from the Affordable Care Act… Preserving many of the important aspects of the Affordable Care Act will save millions of lives.”
Perceptions by Policymakers and the Public
Many participants felt that people with disabilities were not priorities for policymakers and that they are subject to negative perceptions by the public.
“Pre-existing conditions… [are not] a reflection of an individual’s moral character like it has been hinted in some health care debates. Some people say, ‘Well, individuals with more [health care needs] should have to pay more.’ It’s not the same as people with bad driving records having to pay more. People don’t choose to have most of the medical conditions that cause health premiums to go up and that is important to keep in mind.”
“Just because our diseases are rare doesn’t mean we don’t count…We’re not collateral damage in what’s best for the many.”
“I don’t think that disabled people are a priority of policymakers or the general public because the standard of care that we get is pretty substandard and if we were, it would be relatively easy to fix it.”
“To have your citizens’ health as a commodity is not only appalling but should be illegal…Peoples’ health is not something that you should put a price on. That should be something that the government provides for you, because having a live citizen should be a priority.”
“Maybe [the] number one thing then is an attitude change. You’re not dealing with line items on a budget; you’re dealing with what real people need.”
These comments from consumers across the country indicate that, despite improvements under the Affordable Care Act, much work remains to be done to assure that people with disabilities have access to the health care they need and to educate policy makers and the public about the issues identified.
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