Patients with Disabilities: An Unmet Need

Physicians may be technically ADA-compliant, but that doesn’t mean they are meeting the needs of their patients with disabilities.

May 2024 – The Journal of Healthcare Contracting

The law says that providers must ensure full and equal access to their healthcare services and facilities. Federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act of 1990 and the ADA Amendments Act of 2008, as well as the 2010 Patient Protection and Affordable Care Act, prohibit discrimination against Americans with disabilities. But the letter of the law isn’t enough.

“Physicians may be technically ADA-compliant, but that doesn’t mean they are meeting the needs of their patients [with disabilities],” says Carolyn Foster, M.D., MS, assistant professor of advanced general pediatrics and primary care at Northwestern University Feinberg School of Medicine. “The ADA is an incredible law; it is civil rights legislation for people with disabilities, and with it comes specific regulations around space and equipment. But depending on the person’s individual disability and needs, this may not be sufficient.”

What is a disability?

According to the Centers for Disease Control and Prevention, a disability is any condition of the body or mind that makes it more difficult for a person to do certain activities and interact with the world around them. Overall, there are about 42.5 million Americans with disabilities, making up 13% of the civilian noninstitutionalized population, according to U.S. Census Bureau data from 2021.

“There are multiple models of disability – the medical model, social model and neurodiversity models among them,” says Clarissa Kripke, M.D., AAFP, clinical professor of family and community medicine at the UCSF School of Medicine. “Each has a place and time. The key is to use the right model for the right situation.” Dr. Kripke directs the Office of Developmental Primary Care at UCSF, a program dedicated to improving outcomes for people with developmental disabilities across the lifespan with an emphasis on adolescents and adults.

“The medical model is at its best when someone was “normal” to begin with, meaning their traits and characteristics fit into the statistical norm on a bell curve,” she says. “Then something happens – they get sick or hurt – and we have a pill or procedure to restore them to normal. For example, if someone has normal vision and develops a cataract, we can restore their vision by doing a simple surgery. If someone falls and breaks their leg, we can take them to surgery and they can walk again.

“The social model is very useful when the goal isn’t to change a person’s function, but to enable them to participate by improving adaptive equipment or the environment. For example, suppose I want to be a doctor and I have a mobility disorder. If my medical school welcomes people with disabilities, holds classes in a room with a wheelchair ramp and provides a lift transport to rotations, I can meet all the requirements of my training. However, if my school decides that doctors who use wheelchairs are unfit, or creates barriers for me and other disabled staff and patients, such as heavy doors, stairs, or exam tables and scales we can’t use, I wouldn’t be able to become a doctor.”

A third model – the neurodiversity model – “is an acceptance model that focuses on what people are good at and on their gifts and interests rather than their limitations. [T]he goal is to help the person maximize their potential and make their best contribution by focusing on their strengths and what they can contribute rather than solely on what resources or accommodations they need. For example, Stephen Hawking both needed total assistance for all his basic activities of daily living and made profound contributions to understanding the universe.”

The good news, says Dr. Kripke, is that “there is more awareness in the general population about neurodiversity and the contributions that people with disabilities make, and that has translated into more awareness in the medical profession. That is especially true among younger doctors who had the benefit of going to school with people with disabilities, and with the assumptions that disability is part of the human experience, a valued part of human diversity, and that reasonable accommodations and inclusion are required by law.”

Barriers for patients

Barriers exist in many physician offices today, including insufficient physical and communication accommodations; knowledge, experience, and skills; structural barriers; and attitudes toward people with disabilities, according to a 2022 article in Health Affairs titled “’I Am Not The Doctor For You: Attitudes About Caring for People With Disabilities.”

In a study, physicians repeatedly raised the issue of limited time with patients as a barrier to providing high-quality care to people with disabilities, according to the authors. “A rural-practicing primary care physician said, ‘It’s hard to individualize what you need to do and make sure they understand, and take care of their needs, in a 15-minute appointment.’” One specialist told the researchers that people with disabilities are “a disruption to clinic flow.”

The physicians in the study also raised concerns about scheduling and the ability to document the need for accommodations in the electronic health record, and difficulty coordinating care with families of people with disabilities, particularly when family members were not local or were unable to attend appointments. “Physicians frequently stated that their clinical settings failed to provide adequate expertise or administrative support needed to care for people with disabilities.”

Authors of a study in BMJ Open studied self-reported barriers to primary care access by autistic adults compared with non-autistic adults. They found that the following circumstances did lead to adverse outcomes:

  • Difficulty using the telephone to book an appointment.
  • Challenges with the waiting room environment.
  • Difficulty planning an appointment in advance.
  • Needing a support person to attend appointments.
  • Not feeling understood.
  • The inability to see a known or preferred doctor.
  • Waiting to see a doctor.

Much of the deficits in communication stem from the delay in the patient’s onset of speech, poor understanding of the words being spoken to them, and the inability to use speech appropriately in social situations, which can lead to failure answering questions or using an improper tone of voice, wrote pediatrics researchers in a 2019 article in Frontiers in Pediatrics.

“In addition, children with ASD [Autism Spectrum Disorder] often have difficulty interpreting sounds or visual information, which may lead to a decrease or lack of response to normal social cues, further hindering the formation of relationships with others,” they wrote. “These children typically have a difficult time adjusting to new surroundings and stimuli, often favoring their everyday, predictable routines. Even with these common characteristics, managing children with ASD, particularly when they are ill, can be difficult, as no two children present the same way.”

A new approach

Physicians can’t control all these factors, but they can control and modify their approach and attitude toward patients with disabilities. And some are doing just that.

Doctors in medicine have some of the worst aspects of ableism, says Dr. Foster, referring to what has been defined as discrimination of and social prejudice against people with disabilities. “In medicine we are taught to be corrective. We see disability as something to be fixed, rather than focusing on function.

“One of our jobs as physicians is to assess not only developmental disability, but also health literacy,” she says. “My approach is, ‘Tell me your understanding of your condition and your understanding of what I’m asking you to do for your health.’ If there is a deficit, I work with the patient and family to fill it. Physicians should be doing this anyway. But this is where ableism may come in. Some doctors make assumptions, like, ‘This person can’t do what I’m asking.’ But we shouldn’t assume people with a disability can’t participate in their own healthcare.”

“The medical profession has a long way to go to improve clinical skills to better serve patients with intellectual, cognitive, psychiatric and physical disabilities,’ says Dr. Kripke. “Unfortunately, very few medical schools offer training in care of people with disabilities. This will improve as we develop more training and admit more health professionals with disabilities into clinical training. It will also improve as we include people with disabilities in community-based research programs where people with disabilities work with academics to conduct research that is relevant to the community. Patient advisory councils can help medical centers and practices understand the user experience of being a patient.”

Medical schools are attempting to address the gaps in medical education regarding how to serve patients with intellectual and developmental disabilities. For example, on their two-week elective rotation, medical students at UCSF teach a class on a health topic to people with I/DD, says Dr. Kripke. This helps people with I/DD learn about health, while health providers learn to partner effectively and communicate with people with complex disabilities. In Ohio, The Ohio State University College of Medicine offers training on I/DD that includes interacting with community volunteers, home visits and assignments to disability-related sites in the community.

“The practice of medicine changes slowly,” says Dr. Kripke. “Far more work is required.”

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