“The Doctor Won’t See You Now:” Part Two: Why Do Barriers to Healthcare for Women with Disabilities Persist?

Medical students receive little, if any, education about how to provide care and treatment to people with disabilities.

Women with disabilities live at the intersection of two main biases:

  1. Nearly 90 percent of people (men and women) hold some sort of gender bias against women, according to the United Nations Development Programme’s Gender Norms Social Index.
  2. “P]reference for people without disability compared to people with disabilities was among the strongest implicit and explicit effects across the social group domain,” according to a study by the American Bar Association (ABA). And although the ABA study was completed in 2007, Harvard researcher Tessa Charlesworth reported in 2022 that prejudice against people with disabilities decreased very little since 2008 and is shifting at such a slow pace that it could take more than 200 years to reach zero bias.

In Part One of this two-part series, we discussed the impact of these two biases on healthcare, the enormity of the issue, and the sometime disastrous consequences for women with disabilities. The American with Disabilities Act, which was passed nearly 34 years ago, was supposed to address and remedy discrimination. Why do so many women with disabilities continue to face substantial barriers to healthcare?

Stereotypes and Stigma

Some of the problems may stem directly from the biases toward women and people with disabilities. “Many participants implied that providing accommodations to care for people with disabilities was burdensome,“ reported a 2022 study in The Journal of Health Affairs, ‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities. “One specialist said about people with disabilities, ‘they can create a big thing out of nothing.’ Another said that people with disabilities ‘are an entitled population.’”

Gender bias can also color physicians’ attitudes toward patients. For example, a 2018 study found that doctors often view men with chronic pain as “brave” or “stoic,” but viewed women with chronic pain as “emotional” or “hysterical.

Another survey, also completed in in 2018, reported that many dentists and physicians believed that women exaggerate their pain, and that women patients were therefore “less likely to receive more aggressive analgesic treatment.”

A Lack of Provider Education

Many physicians also feel they do not have the knowledge necessary to treat people with disabilities. A 2021 study noted that “only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability.”

That’s not surprising, given that medical students receive little, if any, education about how to provide care and treatment to people with disabilities.

Physicians in the Journal of Health study mentioned above reported that they felt they and their staff lacked the knowledge, experience, and skills to care people with disabilities. Some were afraid of hurting patients, especially when it came to helping people transfer onto medical treatment tables.

“Nine times out of ten, the doctor's office is not prepared to assist somebody transfer from their wheelchair to a piece of medical equipment,” says Beth, a wheelchair user from Virginia. To mitigate the issue, she always brings her husband to medical appointments to assist her.

A Shortage of Accessible Facilities and Resources

One hundred percent of the physicians surveyed in The Journal of Health Affairs study reported physical barriers to providing health care for people with disabilities, like inaccessible medical equipment and facilities. An onsite audit of California medical facilities found that just 19.1% of medical offices had accessible examination tables, and only 10.9% had accessible scales.

Accessible communication is also often in short supply. “Barriers to effective communication appear to be a universal problem across disability experiences,” noted he authors of a 2019 study. Physicians surveyed in the study reported they often bypassed ASL interpreters and auxiliary aids when communicating with Deaf people. Few had materials available in formats that were accessible to people who are blind or have low vision, and some noted that adjusting fonts in the electronic medical record was “a battle.”

They also admitted that they rarely spoke directly to people with intellectual disabilities, preferring to speak with caregivers. Glenda from Oregon knows that issue firsthand. “Doctors don't listen because I have autism,” she says, adding that “the doctors don't sometimes take me serious.”

Issues Within the Current Healthcare System

Both physicians and patients with disabilities say that the current structure of the U.S. healthcare system erects other barriers. Physicians cite time constraints as a prime example. “Seeing patients at a 15-minute clip is absolutely ridiculous,” said one physician surveyed in The Journal of Health Affairs study.

Issues with insurance were another problem reported by both doctors and patients, and extend to daily health needs.

Beth says that obtaining durable medical equipment, like the wheelchair she needs for mobility, is one of the biggest medical issues she deals with, and one of the most time-consuming. She has to go through doctors, insurance providers, occupational therapists, and finally service providers before getting a wheelchair. “And since large companies have taken over many of the mom-and-pop shops, those providers have beennarrowed down to about two choices for most people in this country. And that means you are kind of held hostage.”

Beth isn’t alone. According to a recent ALS Focus survey, the prior authorization request process delayed or denied physician-prescribed care for over a third of the study’s participants. Twenty-five percent of respondents in another ALS Focus survey said they paid out of pocket for the cost of their power wheelchair, and fifty percent paid for their own portable ramps.

The insurance issue affects more than mobility equipment. “It's hard to imagine anything more essential to life than the ability to breathe,” said Calaneet Balas, president and CEO of The ALS Association in an International Business Times article. “Yet Medicare Advantage plans are denying hundreds of claims for ventilators to patients with amyotrophic lateral sclerosis, or ALS, as not ‘medically necessary.’”

The Devaluation of Disabled Lives

Invented in the 1970’s and a standard tool since the 1990’s, Quality Adjusted Life Years (QALYs) are measurements used by insurance providers to lower healthcare costs—and they may undervalue treatment that extends or improves the lives of people with disabilities, according to Quality Adjusted Life Years and the Devaluation of Life with A disability, a 2019 report by the National Council on Disability (NCD),

“Negative biases and inaccurate assumptions about the quality of life of a person with a disability are pervasive in U.S. society and can result in the devaluation and disparate treatment of people with disabilities,” the report says, “and in the medical context, these biases can have serious and even deadly consequences.”

Those biases don’t stop with insurance providers. “There was one finding that really popped out at me as the most troubling,” Dr. Lisa Iezzoni, one of the authors of The Journal of Health Affairs study told NPR, “and that was that 82% of doctors think that people with disability have worse quality of life than other people…that might explain why patients tell me that their doctors don't bother to get them out of their wheelchair to do a pap test or recommend a mammogram.”

Hope on the Horizon

Though the reasons behind the barriers are real and varied, they are not intractable. In fact, the U.S. Department of Health and Human Services’ Office for Civil Rights recently finalized Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. The new rule strengthens protections for people with disabilities under Section 504 of the Rehabilitation Act by addressing QALYs, the need for accessible medical equipment and more. We’ll examine this and other hopeful signs in Part Three of the series:  Surmounting the Barriers to Healthcare for Women with Disabilities. 

About The Author: Cindy Brown Is A Fellow With The Loreen Arbus Accessibility Is Fundamental Program, A Fellowship Created With Women’s ENews To Train Women With Disabilities As Professional Journalists So That They May Write, Research And Report On The Most Crucial Issues Impacting The Disabilities Community.