Needless to say, people with disabilities should be treated with the respect they so rightfully deserve, yet some segments of this demographic seem to struggle immensely in securing adequate care. The term "disability" is extremely diverse. Primarily, it refers to a "physical or mental condition that limits a person's movements, senses, or activities." Many are born with a disability; others receive them through injury or a chronic condition, and others develop one as they age.
It is without a doubt an emerging field within public health, seeing as more than one billion of the world population (or 15%) has been diagnosed and is living with some form of disability. And of that 15%, it is estimated that 190 million people or 3.8% aged 15+ years, require extensive healthcare needs and services. Despite this number increasing, people with disabilities continue to be overlooked as new studies suggest that physicians' attitudes and lack of knowledge about how to care for this demographic are to blame for the health care disparities they encounter. "That physicians have negative attitudes about patients with disability wasn't surprising...But the magnitude of physicians' stigmatizing views was very disturbing," said Lisa I. Iezzoni, lead author of the study. The extent of the situation becomes apparent in Lisa Weisinger's case, where she and her husband, both of whom are physicians, struggled to find acceptable medical care for their 26-year-old son Jamie, who has Down syndrome. They eventually had to settle on the Down Syndrome Adult Clinic at Massachusetts General Hospital in Boston, a five-hour trip from their home. This is just the first of many cases as the effect of such prejudice continues to disproportionately place people with disabilities following the rise of the pandemic. Physicians need to wake up and recognize these biases to avoid further inaccurate assumptions about the values of patients with disabilities, which altogether limit their health care options and accelerate their already compromised care.
The lives of people with disabilities by physicians are seen as dismissible and invaluable, leading them to be denied the care they need. Case in point, 71-year-old Lex Frieden was in a car accident and rushed to the ER where it was found that he had a badly broken injured hip. However, years prior, he was in another car accident, which led him to be quadriplegic, meaning he has been unable to walk since 1967. When the doctor observed that he had a broken hip but could not walk, the doctor decided on forgoing fixing the hip of the man who would never walk anyways, leading to years of pain for Frieden and limiting his ability to sit in his wheelchair for hours at a time. This is not the first time this has happened and won't be the last. In fact, the majority of physicians share this view as a survey conducted that more than 80% of U.S. physicians believed people with a significant disability have a worse quality of life than those who are not disabled, clearly emphasizing how physicians perceptions could negatively influence the care of more than 12% of the U.S. population with disabilities. Quite contradictory to the opinions of people with disabilities, as studies show that most don't view their lives as tragic and instead have a good and excellent quality of life. "We wouldn't expect most physicians to say that racial or ethnic minorities have a lower quality of life, yet four-fifths of physicians made that pronouncement about people with disabilities. That shows the erroneous assumptions and a lack of understanding of the lives of people with disability on the part of physicians," said Iezzoni. The same study further surveyed 714 more physicians across specialties who tended to deal with people of disabilities daily. From the results, it was found that only 40.7% felt confident that they could provide people with disabilities with the same quality of care their other patients received. And, no more than 56.5% of doctors said they welcomed people with disabilities into their practices, the majority of which were female, and practiced at medical centers. Despite these results, only 18.1% felt that the healthcare system often treats people with disabilities unfairly. Ironic, seeing as people with disabilities are reportedly twice as likely to perceive healthcare provider skills as inadequate to meet their needs, four times as likely to be treated poorly and three times more likely to be denied care. With that said, every major report that has addressed the poor quality of healthcare for people with disabilities has called for improvements in the training of health professionals, with the Institute of Medicine proclaiming health care providers are ill-equipped to meet the complex medical and psychosocial needs of people with disabilities. These statistics alone speak for themselves as people with disabilities continue to work hard to find understanding doctors, wondering if this time they will be lucky enough with a physician who will understand their problem and make them feel better, not worse.
The worry doesn't stop there as people with disabilities fear they will get lesser treatment during the pandemic based on their previous harsh medical system experiences. Much of this has to do with the public, and many in the medical community, undervaluing their lives, leaving many to be concerned that stereotypes of what life is like living with a disability will be improperly used to exclude people from needed care. Particularly, back in March of 2020, when there was a shortage of ventilators and doctors were forced to decide who lived and who died. State health officials even went as far as drafting rationing plans, excluding some people with significant disabilities from ventilators and other treatment despite them living healthy, full lives just as anybody else. Fast forward to today, and people with disabilities continue to be deprioritized for vaccine eligibility despite many being at a higher risk if they contract COVID-19; with the new evidence suggesting that adults with Down syndrome are three times more likely to die from COVID-19 than the general adult population of the same age, gender and ethnicity. Some countries even altogether failed to include people with disabilities consistently in their response to control the pandemic due to very limited data being collected to separate disability into its own sector, inevitably leading them to have a higher risk of contracting and developing severe symptoms. Ultimately, these disparities long existed for people with disabilities before the pandemic and worsened during the pandemic as others' judgements reflect a bias that their lives hold less value and therefore can be left unprioritized.
Public health faces a critical responsibility to promote health equity for people with disabilities and denormalize them being overlooked and not accommodated. There is an immense amount of concern with patients reporting not being believed by their doctor, receiving particular looks by their healthcare providers due to their disability, and being treated unreasonably differently. Ministries of Health need to pledge towards disability inclusion and recognize people with disabilities as a health disparity population and address this situation considering these interactions are just as important as treating the disease or disability itself. Having this disparity status for this group will allow governments to actively work toward the ultimate goal of ensuring equality in care. That said, for the most part, governments can improve outcomes for people with disabilities by including more training about disability in all levels of medical education, which includes disability cultural competence and etiquette, improving access to quality and affordable health care services, and collecting increased data to be able to include peoples with disabilities as their own sector in public health programs. At the end of the day, it just takes an extra second to treat all patients with the respect they rightly deserve. People with disabilities shouldn't have to justify that they value their lives just as much as anybody else.
Written by Areeba Saleem
Edited by Joyce Qian
References
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