Family Perceptions of Health Care Access for Autistic Young Adults Receiving Disability Services

Abstract

BACKGROUND: Autistic young adults (YAs) often livewith family and presentwith complex health needs. Adultswith developmental disabilities (DDs)who livewith family are the least likely to receive preventive health care comparedwith residents of other settings. No published studies have examined intersectionality between age, race or ethnicity, household income, and health needs in health care access for autistic YA. This study explored health care access among autistic YAs receiving state DD services comparedwith other age and disability groups. METHODS: We analyzed data from the National Core Indicator's Adult Family Survey of families of DD service users ages 18 and older who lived in the respondent's home. We used bivariate analyses and multivariable logistic regression to examine family-reported access to health care providers when needed, the role of sociodemographics, and the complexity of health care needs in predicting consistent care. RESULTS: Approximately 70% of autistic YAs had consistent access to health care when needed, similar to autistic adults but at lower rates than those with other disabilities. Odds of consistent health care access were higher among autistic YAs who were Black or lived in a rural area and lower among those with co-occurring health conditions or who needed extensive personal care support. CONCLUSIONS: Nearly one-third of autistic YAs who lived with family and receive state DD services had difficulty consistently accessing needed health care. Improved surveillance of health care services in this population is needed in addition to innovations in Medicaid waivers, which fund DD services, to address health needs and support families in accessing care.