Understanding Health Iniquities Experienced by People with Disabilities
Or: Unpacking the Many Layers of How Health Care Can Fail Disabled People
Image Description: In beige and black a broken symbol of medicine with cracks and missing parts, suggesting the failures of health care to best serve disabled patients.
I think we can all agree that health care is essential. At some point in our lives, we become sick and need treatment. Some of us also have disabilities and chronic illnesses to manage. And when we have both disability and chronic illness, plus an acute health care issue, complexity can increase and complications can ensue.
Although I really like my doctors, I always joke with them: “I hope I don’t see you again soon.” Because, if I visit again too soon (outside of a regular checkup) then I am having a health problem. While I trust my doctors because I picked them carefully, interviewed them on my first visit, and continued to return for ongoing care, I do not have this trust for other health care professionals due to many years of terrible experiences.
In my previous newsletter, I highlighted the several occasions where I had an infection (which is a common problem due to my autoimmune disease and medication that suppresses the immune system), visited urgent care because I could not get into my primary care quickly enough, and was denied treatment.
The worst time this happened I ended up in the emergency room and hospitalized for several days with a skin infection due to undiagnosed psoriasis. Once I was started on antibiotics, the infection cleared up quickly. After I was discharged from the hospital, I was able to visit my dermatologist and he instantly diagnosed the psoriasis and gave me medication to manage it. None of the hospitalists nor the dermatologists who visited me while I was in the hospital could figure this out.
I don’t know if they were blinded by my disability, and so struggled to provide standard and effective treatment. It remains a mystery to me. But during the couple days of my stay (thankfully pre-pandemic as hospital care has worsened since then) I had to have my husband visit and provide care that the nurses did not seem to be qualified and capable to provide, like helping me transfer to my wheelchair, use the bathroom, wash up, and so forth.
During my stay they incorrectly tried to give me insulin and test my blood sugar, when I have never been diagnosed with diabetes. I had to be constantly vigilant about improper care and mistreatment. We all know hospitals are exhausting, with the constant lights, noise, and never-ending stream of strangers entering and even waking patients up. But I experienced an extra level of tension in trying to protect myself from discrimination and bad care while advocating to minimize the length of my stay. I needed to keep my hospitalization as brief as possible to reduce the negative impact on my health and well-being.
While these are just some examples (out of many) from my own experience, I think it’s important to highlight recent research that has underscored the many dangers and embedded ableism that lurk for disabled people requiring necessary health care.
What Do We Know About Health Care Inequities and Impacts?
Only recently has research begun to delve into the experiences of disabled people when seeking health care. There have been a few articles and opinion pieces about the need to improve health data about people with disabilities, including better understanding of disparities, access barriers, and outcomes. As the picture comes into focus, increasingly disturbing findings are unearthed. For example, a recent survey that found 40% of people with disabilities reported unfair treatment in health care settings, including delays in receiving care or not receiving it at all.
Unfortunately, many structural problems with accessing health care were laid bare during the height of the pandemic. People with disabilities were denied care and deprioritized in hospitals, resulting in unnecessary deaths. Disabled people were also deprioritized for vaccines when they became available. People with intellectual and developmental disabilities were six times more likely to die from COVID-19. Disabled people receiving home- and community-based services were also more likely to die from the virus, nearly 27 times the general population. And the pandemic worsened health care inequities already regularly experienced by people with disabilities.
Perhaps even more galling is that the pandemic just exacerbated what was already a bad situation for disabled people in health care. Barriers to preventative health care for people with disabilities, even more specifically those with intellectual and developmental disabilities, already existed. People with physical disabilities already regularly experienced inaccessibility of exam tables and other diagnostic equipment. And although it is only one example, this paper highlights a case study of standards of care not being followed for a woman with intellectual and development disabilities.
While much more research is needed on the specifics of differences in health care for disabled people and the very significant negative outcomes, we have enough understanding that the National Institutes of Health recently recognized disabled people as experiencing health care disparities and are funding research to better understand the issues.
Why Are There Disparities in Health Care?
If you ask me why there are such disparities in health care experienced by disabled people I would say: “same as it ever was.” Meaning that ableism exists everywhere in our society unless we focus on addressing it.
Unfortunately, I would multiply this many times in a health care setting because of the traditional medical model of understanding disability. This way of thinking views disability as needing to be fixed or cured through medical intervention. There is little room for comprehending that a disability may be permanent or lifelong, and therefore require accommodation from the environment or surroundings (or, gasp!: culture and people) for the person to be included. With this frame of reference, people with disabilities and chronic conditions that enter the medical system can upend the regular practices and systems.
This concept of a disabled person being different, requiring accommodations, and living life differently challenges people trained throughout their profession with the medical model as the ever-present background. Recent research found that the overwhelming majority of doctors (82%) held the preconception that people with disabilities had worse quality of life. The same study reported just 57% of doctors strongly agreed that they welcomed disabled patients into their practices and that just 41% were very confident in providing equal quality in care to disabled patients. Conversely, only 18% strongly agree that the health care system often treats disabled patients unfairly. Wrap your heads around those numbers for a moment and contemplate whether disabled people can possibly receive equitable treatment.
Further, a qualitative study that interviewed doctors in small focus groups found:
“Physicians reported feeling overwhelmed by the demands of practicing medicine in general and the requirements of the Americans with Disabilities Act of 1990 specifically; in particular, they felt that they were inadequately reimbursed for accommodations. Some physicians reported that because of these concerns, they attempted to discharge people with disabilities from their practices. Increasing health care access for people with disabilities will require increasing the accessibility of space and the availability of proper equipment, improving the education of clinicians about the care of people with disabilities, and removing structural barriers in the health care delivery system. Our findings also suggest that physicians’ bias and general reluctance to care for people with disabilities play a role in perpetuating the health care disparities they experience.”
It’s also important to note that health care doesn’t stop when we leave the doctor’s office or hospital. People with disabilities (or those recovering from an illness or injury) frequently need access to ongoing treatment, equipment, and care at home or in their community. However, research finds a significant number of disabled people experience delays, insurance denials, or difficulty affording co-pays for medical equipment and other health services. Additional research found difficulty for disabled adults in getting physical therapy services, home health care, and personal services. Health insurance can also be a barrier for approving and affording necessary treatment for chronic conditions and disability health maintenance.
What’s Next?
As you can see, there’s a lot needing to be addressed here. I would argue that inefficient, ineffective, and discriminatory health care experienced by disabled people costs a lot of time and money to all of us. Just one example: I should have been treated for my infection with a cheap course of antibiotics instead of going to the emergency room and being admitted for several (expensive) days at the hospital. This failed approach cost both me, my health insurance, and the health care system time and significant money. It was completely unnecessary and we have a lot of those cases nationwide.
If we could adjust our system to provide non-discriminatory preventive care and necessary equipment to outpatients or in homes, how much money and time would we save as a society? Further: how many lives would we save from terrible outcomes and how much happier would they be?
In the next newsletter, I’ll dig in further on steps we can take to address health care disparities experienced by people with disabilities.
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