A study published in December in Disability and Health Journal found that people with cognitive disabilities, such as autism as well as other intellectual and developmental disabilities, reported significant difficulties in receiving high-quality health care. Adults with autism showed no differences when compared with adults with other cognitive disabilities.
In addition to its findings, this study is noteworthy because past research focused on the perspectives of providers or the types of care received rather than on the reported experiences of patients with cognitive disabilities.
The study found that adults with cognitive disabilities reported lower satisfaction with health care services compared to the general population (7.71 vs. 8.31 on scale from 0 to 10). Researchers used a national sample of more than 22,000 adults with and without cognitive disabilities to analyze patient-reported experiences. Adults with cognitive disabilities were less likely than the general population to report that providers:
These challenges can lead to poorer patient outcomes, as found in a 2009 study.
In September, the National Institutes of Health (NIH) designated people with disabilities as a group with health disparities. “This designation recognizes the importance and need for research advances to improve our understanding of the complexities leading to disparate health outcomes and multilevel interventions,” said Eliseo J. Pérez-Stable, M.D., director of the National Institute on Minority Health and Health Disparities (NIMHD). She said that NIH is in the process of launching a research program to better understand the health disparities faced by people with disabilities who are also part of other populations designated as having health disparities.
NIH is also calling for proposals for research focused on novel and innovative approaches and interventions that address the intersecting impact of disability, race, and ethnicity, and socioeconomic status on healthcare access and health outcomes.
Recent research focused on provider perspectives shows that many are uncomfortable providing care to people with cognitive disabilities. STAT News published an article in December pointing to a 2022 study of physicians treating autistic children that noted they receive little training on how to provide care. A 2021 study surveyed 714 physicians, most located in Massachusetts, and reported that only 40.7% of physicians were very confident about their ability to provide equal quality care to patients with disabilities. Just over half strongly agreed they welcome disabled patients into their practices.
The writer of the STAT opinion piece noted that her autistic brother and their parents have had their own difficulties with the healthcare system. As a medical student, she has found that doctors are not required to take classes on how to care for patients with cognitive disabilities. Schools can find financial resources to offer this training, she wrote, noting that the National Inclusive Curriculum for Health Education offers grants and resources to schools willing to undertake this curricular addition. Only 15% of U.S. medical schools have taken advantage of those grants and resources as of the end of 2023.
“Addressing this problem might include incorporating disability competencies into medical education and should also include policies – for example, enhanced reimbursement – that reflect the increased time and effort that might be needed to ensure that the needs of disabled patients are being met,” said Elizabeth Stone, a faculty member of the Rutgers Center for Health Services Research at the Institute for Health, Health Care Policy and Aging Research and the lead author of the December study.
Along with systemic and policy changes, the research team said that patients can also improve their experiences, primarily by preparing for health appointments in advance and asking for accommodations.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
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