Racial and Ethnic Disparities in Perceived Barriers to Health Care Among U.S. Adults With Intellectual and Developmental Disabilities.
Black and Latinx adults with IDD most often skip care because they don't trust providers and don't know where to go, not because of insurance or distance.
01Research in Context
What this study did
Wang et al. (2021) asked U.S. adults with intellectual or developmental disabilities what keeps them from seeing doctors.
They sorted answers by race and ethnicity to see which problems were shared and which were unique.
What they found
Black and Latinx adults most often said, 'I don't trust the system' and 'I don't know where to go.'
White adults most often said, 'The clinic is too far' and 'My insurance won't pay.'
Everyone, regardless of race, worried about cost.
How this fits with other research
Arana et al. (2019) saw the opposite pattern for breast-cancer screening: Hispanic and Black women with ID had higher mammography rates than White peers. The two studies look different but measure different things—one counts actual visits, the other counts reported barriers. High barriers do not always equal low use; trust issues may be overcome by strong outreach programs.
van Herwaarden et al. (2020) interviewed providers and listed eight culture-specific hurdles, such as family communication gaps and agency rules. Their list helps explain why Black and Latinx clients in Henan's study cite 'not knowing where to go'—agency paperwork and language mismatches can hide the front door.
Older UK data from Horner-Johnson et al. (2002) and Tsakanikos et al. (2010) already showed minority adults with ID receiving fewer psychiatric and respite services. Henan's 2021 U.S. survey updates those findings with a focus on everyday healthcare and shows the gap has not closed in two decades.
Why it matters
If your caseload includes Black or Latinx adults with IDD, start by mapping trustworthy clinics and explaining in plain language how to book an appointment. Pair the list with a short social story or visual schedule that names the bus route, the check-in desk, and the clinician's face. This single step can cut through the top two barriers—distrust and not knowing where to go—before cost or distance even come up.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Create a one-page 'where to go' map that shows clinic name, photo of the entrance, bus line, and phone number; review it with each Black or Latinx adult client this week.
02At a glance
03Original abstract
Barriers to health care access can greatly affect one's health status. Research shows that U.S. adults with intellectual and developmental disabilities (IDD) have poor health and face barriers such as long waits for appointments. However, whether barriers differ by race and ethnicity has not been examined. We conducted a secondary data analysis using the 2002-2011 Medical Expenditure Panel Survey dataset, and compared perceived barriers of community-living U.S. adults with IDD in three racial and ethnic groups (White, Black, and Latinx). Specifically, we examined the top reasons for not having usual source of care, delaying or foregoing medical care. For Black and Latinx adults with IDD, the most-mentioned reasons for not having usual source of care, delaying or foregoing medical care were "don't like/don't trust doctors," "don't use doctors," and "don't know where to get care." In comparison, the White adults with IDD group's biggest perceived barriers were location and insurance related. All groups cited that being unable to afford care was a top reason for delaying or foregoing care. Policies/interventions to improve health care access in racial/ethnic minorities with IDD must first address the topic of developing trust between patients and the health professions. Insurance and the rising costs of care are also key areas that need attention.
Intellectual and developmental disabilities, 2021 · doi:10.1352/1934-9556-59.1.84