The National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) funded a study which examined barriers to health care by race. We share a summary of the study’s findings below to help our members as they seek to offer culturally competent supports to people with intellectual / developmental disabilities. Links to the full research can be found here.
“Based on past research, people with intellectual and developmental disabilities (IDD), in particular, may face significant barriers to healthcare access. Examples of barriers they encounter may include unaffordable cost, lack of providers trained in the healthcare needs of people with IDD, and long waiting times for appointments due, in part, to that lack of trained providers. Additional barriers to healthcare access may exist for individuals in ethnic and racial minority groups with IDD. However, there’s no known prior research done to investigate barriers to healthcare access in this specific population. In a recent NIDILRR-funded study, researchers looked at healthcare data for individuals with IDD living in the community. The researchers wanted to know whether people with IDD who were Latinx, White (Non-Latinx), and Black (Non-Latinx) experienced different barriers to healthcare access.
The researchers found the following results:
The percentage of individuals with a usual source of care was similar for all three groups: 84% for Black, 83% for White, and 77% for Latinx.
Individuals who were Black or Latinx cited not liking or trusting doctors and not using doctors or opting to treat themselves among their top reasons for not having a usual source of care. Individuals who were White cited recently moving or lack of health insurance as their top reasons. The White individuals did not mention not liking or trusting doctors as a reason.
Among those who chose to forego needed care, inability to afford care was the top reason for all three groups. However, a higher percentage of Black and Latinx individuals cited this reason than White individuals. Black and Latinx individuals also cited problems getting to a provider’s office and not knowing where to get care. White individuals cited problems with providers accepting their insurance or lack of coverage for costs.
Among those who delayed needed care, inability to afford care was the top reason for all three groups and all three groups also cited problems getting to a doctor’s office. Black and Latinx individuals also cited lack of time and not knowing where to get care. White individuals cited lack of insurance coverage as another reason for delaying care.
The authors noted that while the three groups were comparable with each other regarding having and not having a usual source of care, their reasons for lacking a usual place of care were different among the groups. In addition, while factors such as lack of affordability and lack of transportation or knowledge of where to get care led to delayed care in the White group, the same factors led many Black and Latinx individuals to forego care altogether. The authors suggested this may lead to additional preventable health problems in those two groups.
The authors noted that prior research regarding access to healthcare for adults with IDD may have assumed that they all faced similar challenges with accessing healthcare, regardless of other factors such as race and ethnicity. However, this current study may challenge that notion and highlight the need for future research to address barriers to healthcare access for adults with IDD in diverse communities.”
Additional read: Members who advocate on health equity issues might find this Centers for Medicare and Medicaid Services webinar, titled “The Road to Equity: Examining Structural Racism in Health Care,” of interest. Scroll down on this page to find links to the webinar and supplemental materials.
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