People with intellectual and developmental disabilities are more likely than others to say that physicians don’t listen to them, spend enough time with them or offer advice that’s easy to understand.
In a new study, researchers examined the experiences of more than 22,000 adults across the nation who participated in the 2021 Medical Expenditure Panel Survey, a federal government survey that asks about people’s experiences with health care.
They found that those with cognitive disabilities including intellectual and developmental disabilities were significantly less satisfied overall with their health care services and had worse experiences with providers. The biggest issues flagged by people with disabilities had to do with provider communication and the amount of time they spent with patients with disabilities, according to the study published recently in the Disability and Health Journal.
While previous studies have primarily looked at access to health care or the perspectives of providers, researchers at Rutgers University said their findings are some of the first to give voice to those with disabilities themselves.
Not only are the communication problems highlighted by people with disabilities frustrating, the researchers said, but they also could lead to bad outcomes.
“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 Rutgers University researcher who led the study.
In addition, the researchers said that adults with cognitive disabilities should do more to prepare for interactions with health care providers, including requesting any accommodations that could improve their experience.
People with disabilities have long struggled to access quality health care and research shows that many physicians are ill-equipped to care for this population in the same way as others.
As a result of the hardships faced, the National Institutes of Health agreed in September to designate people with disabilities as a health disparity population.
Disability advocates have pushed in recent years for a requirement that all medical schools include specific training on treating people with intellectual and developmental disabilities. So far, that effort has been unsuccessful, but the American Medical Association and the American Dental Association committed last year to work on expanding disability training for medical and dental students.