Real Talk: Why is it hard to care for patients with disabilities?
Key Takeaways
She was a beautiful 9-year-old girl with cerebral palsy diagnosed at birth who came into my office every month with her mother pushing her wheelchair. Her mother customarily needed diapers, supplies for her home such as a shower chair, nutritional formula, and of course, prescription refills for her daughter’s daily medication.
I would constantly fill out forms, write letters, and plead with her insurance company for pre-authorization. I couldn’t imagine what her mother must go through daily as I constantly fought with the medical system, the same one that employed me.
I was very early in my medical career, and truth be told, I did not have much experience caring for people like this.
Yet, over the years, this young patient and her mother taught me lessons in patience, how to navigate the broken medical system, the disparities individuals with disabilities face, and the lack of training we as doctors have in caring for patients with disabilities.
Shortcomings in training
In medical school, we are not taught how to transfer a disabled patient, make a clinic accessible according to the Americans with Disabilities Act (ADA) standards, or observe the appropriate disability etiquette. Many clinics don’t have accommodations such as accessible exam rooms, scales big enough for wheelchairs, written material in Braille, or translators.
"Our training and education often focus more on rehabilitation efforts to fix the disability instead of learning how to provide the ongoing care and support necessary for this individual to live as they are."
— Kristen Fuller, MD
We are often taught to view a disability as a problem or a bad outcome. No wonder, with this mindset, that individuals with disabilities experience their care as being different from that offered to people who do not have disabling conditions.
Barriers to treatment
A recent survey of 714 practicing US physicians, published in Health Affairs, found that nearly 36% reported knowing little to nothing about their legal responsibilities under the ADA.[]
A prior Health Affairs study, published in February 2021 and based on the same survey, found that just 40.7% of physicians reported being very confident about their ability to provide the same quality of care to patients with disabilities as they did to others.[]
One of the study's lead authors, Dr. Tara Lagu, also conducted focus groups on the disabilities subject with three groups of physicians.[] Various themes emerged.
ADA accommodations
All of the physicians in the focus groups reported dealing with physical barriers that affected their ability to provide appropriate care to persons with disabilities. These included nonadjustable-height exam tables and scales that couldn’t accommodate a person in a wheelchair..
To obtain a patient’s weight, some physicians used workarounds such as sending them to the zoo, supermarket, or a cattle processing plant, where scales were large enough for a wheelchair. None of the physicians said they provided written materials in Braille to their patients, and only a few offered reading materials in large type.
Lack of time
Time was another barrier that emerged from the focus groups. The physicians felt they did not have enough time to properly address their patients’ concerns within a 15-minute allotted time slot. Moreover, electronic medical records do not ask about disabilities or specific accommodations, and as a result, many physicians were caught unaware that patients with certain disabilities would require accommodations in place before their office visit.
Physician attitudes
The focus groups also revealed negative attitudes among some physicians toward patients with disabilities, and some even said that providing care was burdensome. Some physicians said that they denied care to patients with disabilities and discharged them from their practice, stating they were no longer accepting new patients.
Dr. Lagu recounted her own experience with a patient with a disability, in an article in The Atlantic.[] At the time, she was discharging the patient, who was partially paralyzed and used a wheelchair. Despite repeated recommendations in the patient’s discharge notes for an appointment with a specialist, no such appointment ever took place. When Dr. Lagu asked why, the patient’s adult daughter eventually told her that she hadn’t been able to find a specialist willing to see a patient in a wheelchair.
Incredulous, Dr. Lagu started making calls. “I could not find that kind of doctor within 100 miles of her house,” she said, “who would see her unless she came in an ambulance and was transferred to an exam table by EMS—which would have cost her family more than $1,000 out of pocket.”
Be an advocate
Adopt ADA protocols. This means making sure that your office can accommodate patients with disabilities, by doing such things as training your office staff to transfer a patient, setting up an exam room that is wheelchair accessible and has an accessible exam table, and providing a scale large enough for a wheelchair. You may need to provide sign language services when needed.
"Train your office staff to be patient and respectful to patients with disabilities, knowing it may take longer and require a bit more work for their appointments. "
— Kristen Fuller, MD
Schedule more time. Both you and your patients may benefit from a larger appointment time slot so that you can address all of their concerns and yet have some wiggle room for the transport process or addressing complex cases. This is especially true if a patient relies on van transportation, as sometimes these transportation services are late.
Use person-first language. Language matters, especially when talking about people with medical conditions or disabilities. Phrases such as “wheelchair-bound,” “paraplegic,” or “handicapped” are stigmatizing.
The idea of People First Language is to always put the person before the diagnosis. For example, instead of saying “wheelchair-bound,” say “the patient in the wheelchair.” This reaffirms that a diagnosis does not take precedence over any other qualities of the individual, and it reflects knowledge and respect for those with disabilities.
Provide questionnaires before an appointment. Asking patients about their disability and the type of accommodations they may need before their appointment can help the office flow and provide a comfortable and safe setting for these patients. You will then know beforehand to place them in an ADA patient room and to schedule extra time for the visit.