Affordable, quality health care has always been a challenge for people with disabilities. But will government-funded health care address these issues—or make them worse?
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Last month, I found myself in a place most people loathe and fear: the hospital. I was on vacation and broke my knee, which landed me in the emergency room, and had me admitted for two nights. While the hospital is no fun for anyone, for people with disabilities like me, hospitals are even scarier and more dangerous because of rampant ableism and practices that negatively affect us. And, as bad as things are now, I fear access to affordable, quality health care may only get worse for disabled people and other marginalized communities.
I have arthrogryposis, which affects my muscles and joints. I have minimal use of my arms and legs, am a power-wheelchair user, and rely on the assistance of others for most daily tasks. Because I have had more than 20 surgeries, I am keenly aware of the subpar health care disabled people often receive both in hospitals and doctors’ offices.
Although the Americans With Disabilities Act of 1990 (ADA) and the Rehabilitation Act of 1973 require that health-care providers be fully accessible to people with disabilities, substantial difficulties remain. Strikingly, a survey of nearly 2,400 primary-care offices in California discovered that less than half of facilities were entirely architecturally accessible (e.g., ramps, elevators, and widened doors) to people with disabilities. Further, only 8 percent of offices had accessible examination tables, and less than 4 percent had accessible weight scales. Research indicates people with disabilities often receive incomplete medical examinations because equipment such as weight scales, examination tables, and mammography equipment are not accessible.
Of course, barriers to accessible health care often go beyond architectural and medical equipment. Programmatic accessibility, which concerns policies and practices that impact the ability of disabled people to receive quality health care, remains a substantial issue. This includes sign language interpreters, Braille, assistance completing paperwork, flexible scheduling, training of health-care providers, and follow-up procedures and referrals.
During my recent hospitalization, I encountered all three types of barriers. I could not park in disability parking—there were so few spots, and all of them were taken. Once inside, the waiting room that lacked space for wheelchair users. I also encountered inaccessible medical equipment, like examination tables that could not adjust in height, and a hospital bed that I could not independently use for positioning because the buttons were out of my reach.
Nurses and doctors asked my visitors questions about me, even though I am fully capable of communicating. The doctor had no understanding of my disability, which was particularly concerning since I injured my knee that has been operated on previously. At one point, a physical therapist visited my room to help me practice “standing”; had they read my record, they’d know I cannot stand or walk.
And then, two social workers, an occupational therapist, and physical therapist barraged me with questions about how I function outside of the hospital, and could barely contain their disbelief when I told them I work full-time, and have an accessible van, modified house, and personal care assistants. These patronizing experiences are far too common for disabled people, but I expect better of health-care providers.
My experiences are not unique or uncommon. As noted by the Centers for Disease Control and Prevention (CDC), people with disabilities experience many health disparities because of lack of accessible health care. In fact, research consistently finds disabled people are less likely than non-disabled people to receive basic primary and preventive care, such as mammograms, dental care, and vision screenings.
And, as horrible as my recent experience was, disabled people who are multiply marginalized face even worse access to health care. According to a 2011 report from the U.S. Department of Health and Human Services’ Office of Minority Health, “Aside from the public health issues that most racial/ethnic minorities face, minorities with disabilities experience additional disparities in health, prejudice, discrimination, economic barriers, and difficulties accessing care as a result of their disability—in effect, they face a ‘double burden.’”
While barriers to access to affordable, quality health care for disabled people is not a new issue, there are reasons to worry that it might get even worse. Since Donald Trump took office, his administration and the GOP writ large have done everything in their power to reduce our access.
Disabled people contended with the GOP’s repeated attempts to repeal the Affordable Care Act (ACA), which would have had led to decreased access to community-based supports and services and lawful discrimination by insurers against people with pre-existing conditions. While attempts to repeal the ACA have been unsuccessful thus far, thanks mainly to disability activists, its fate is far from certain because of an ongoing lawsuit questioning the constitutionality of the ACA, which the Trump administration has decided not to defend the ACA.
But attacks on the ACA are not the only way in which the Trump administration has undermined access to health care for disabled people. In 2018, the U.S. Department of Justice (DOJ) withdrew proposed regulations related to accessible medical equipment and furniture. The administration’s decision to retract rules that would have clarified the responsibilities of health-care providers under the ADA is even troubling because their enforcement of civil-rights laws is abysmal. Not surprisingly, the DOJ is investigating and litigating 60 percent fewer disability-rights cases than the agency did during the Obama administration, according to Vice News. The lack of enforcement of the ADA will undoubtedly result in even more violations by health-care providers.
Greater attention to access to affordable, quality health care for people with disabilities and other marginalized communities is long overdue. Yet, in a rush to correct these issues we must consider all options available. Although some proposed policies, like government-run universal health insurance, may seem like the obvious solution, unintended consequences must be considered, and that requires engagement with those directly affected—including disabled people.
With the 2020 Election in sight, “Medicare for All” has become the rallying call among progressives, with many Democratic presidential primary candidates expressing support of some type of government-run universal health insurance. While there is much to be worked out by policymakers about what a Medicare for All policy would entail exactly, some in the disability community are concerned that their needs may not be fully met. In addition to worries about what types of health-care services (e.g., dental, vision, mental, and reproductive health care) and prescription drugs would be covered by these policies, there are also fears that long-term services and supports and durable medical equipment might not be adequately covered. Fortunately, Democratic policymakers appear to be taking note of these concerns as they move forward with their plans.
Medicare for All, or some equivalent of government-funded universal health insurance, may be precisely what is needed to ensure disabled people have access to affordable, quality health care—but many questions remain. For example, what are the consequences of the government having full control of our health care?
As we witnessed with the ACA, the implementation of policies are directly impacted by which party is in office. While certainly not perfect, the ACA did include many relevant provisions for people with disabilities. Indeed, the ACA prohibited private insurers from discriminating against people with pre-existing conditions, removed limits on health benefits, and expanded Medicaid eligibility.
Yet, a change in power can rather easily undo these successes, as demonstrated by the current administration. What happens if Medicare for All passes and a few years later the GOP regains power? Will people with disabilities be right back where we are now, with decreasing access to health care, or even worse off? Although disability rights were historically a bipartisan issue (the ADA and many other federal disability rights laws were passed by Republican presidents), the tides have unmistakably changed, and we can no longer count on the GOP to support us.
Unquestionably, with power comes the opportunity for access to health care to be protected or significantly diminished. In Illinois, for example, nearly three-in-ten hospitals are run by the Catholic Church. Although abortion is completely legal, research shows the increasing number of Catholic-controlled hospitals has resulted in decreased access to abortions and contraception.
One must also ask what government-funded universal health care means for our privacy. Will the Health Insurance Portability and Accountability Act of 1996 (HIPAA) go out the window? Will the government be able to access intimate details of our lives? And if so, what does that mean?
As a recent Talk Poverty article explains, the Social Security Administration (SSA) is currently considering a policy that would allow the agency to surveil the social media accounts of people who receive disability benefits. It aims to identify people who are fraudulently receiving benefits (it should be noted that SSA reports the incidence of fraud is “a fraction of one percent”). However, the policy, which is a striking invasion of privacy rights, does not consider the variability of disability. People’s symptoms sometimes change day-to-day. Someone could be having a “good day” and post a photo on Facebook. In turn, SSA could deny disabled people needed benefits simply because they didn’t look disabled enough.
If the government has greater access to our private information, will similar policies be implemented to cut down supports for people with disabilities?
If there is a possibility that access to health care for disabled people and other marginalized communities could be at risk of harm depending on who is in office, might it make more sense to push for incremental improvements? Unquestionably greater enforcement of civil rights laws, including the ADA, and increased regulatory control of pharmaceutical and health care companies would alleviate some of the existing issues.
Certainly, Medicare for All, or some type of universal government-funded health insurance, seems like it might be the answer to ensuring access to health care for disabled people and other marginalized communities. And, it very well may be. However, before we throw our full support behind such a policy, we must fully consider what it means. If health care is completely nationalized, what happens to women, people of color, LGBTQ individuals, immigrants, and disabled people if a future GOP-led government can modify it?
Health care is complex and yet critically important. As I was recently reminded, the health-care system remains ill-equipped to support people like me. We must do better. In moves toward greater access to affordable, quality health care, it is crucial that the needs and experiences of disabled people be fully considered.
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