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

This study used survey data from families of adults who used state DD services. We explored 3 research questions:

1. How do the sociodemographic, health characteristics, and support needs of autistic YAs and autistic adults compare with those of their same-age peers with other MBDDs? How do the sociodemographic and support needs of the family members of autistic YAs and autistic adults compare with the family members of YAs and adults with MBDDs?

2. How do family perceptions of health care differ between families with YAs and autistic adults compared with families of YAs and adults with other MBDDs?

3. What are the associations between family-reported consistency of health care, sociodemographics of autistic individuals and their families, and the complexity of health care needs?

We analyzed data from The National Core Indicators (NCI) Adult Family Survey (AFS). NCI collects and disseminates indicators data for use in improving DD systems performance of member states. The AFS gathers annual input by mail or online format from family members of adult DD service users via a nonprobability sample of those who live at home and use at least 1 direct service in addition to service coordination. Of 46 member states, 12 participated in the 2018 to 2019 AFS. Survey responses were not representative of the state’s entire served population. We examined data for autistic YAs ages 18 to 25 years (n = 700) and autistic adults ages 26 and older (n = 851) per diagnoses reported by the family respondent versus YAs (n = 682) and adults (n = 2514) with other MBDDs (see Table 1 footnote) who did not have autism.

We used “always having access to a health care provider when needed” as a proxy for consistent health care. The dependent variable was assessed with the question, “Can your family member see health professionals when needed? (For example, doctor, dentist, or psychologist).” We also examined family perceptions of whether primary care doctors understood needs related to the family member’s disability.

Independent variables (IVs) characterizing adults were all reported by the respondent and included sex, race or ethnicity, level of education, co-occurring health and psychiatric conditions, means of communication, level of support needed for managing behavior (self-injurious, disruptive, and/or destructive), personal care activities (eg, bathing, dressing, and eating), and daily activities (eg, managing money, shopping, and scheduling), guardianship, and whether the family used self-directed services, such as allowing them to hire or fire support workers and/or control the individual’s budget, which we considered to be an indicator of capability in systems navigation. We included race or ethnicity in our model because of previous evidence of reduced health care access among minoritized autistic individuals.^8,9  IVs characterizing family respondents and their households included level of education, urbanicity, and household income.

The distribution of variables was examined within each group and compared between autistic adults and those with MBDD by using Pearson’s χ² test. Most variables were missing <5% of observations; however, the use of self-directed services was missing 17% of observations and was excluded from multivariable analysis.

We used generalized estimating equation logistic regression models to account for the correlation structure created by sampling within states with varying procedures and differing eligibility criteria. Two final multivariable logistic models examined factors associated with health care access in autistic individuals. IVs were included in the model on the basis of theoretical importance and previous research.

Psychiatric disorders were more common in autistic YAs and adults, as was the reported need for extensive supports of all types, compared with peers with MBDDs (Table 1). Approximately 30% of families of autistic YAs reported they did not receive all services included in the individual’s service plan (Table 2). Nearly one-quarter of families of autistic YAs said they were sometimes or never satisfied with overall services and support, and one-third reported needing help planning for medical care, both significantly higher rates than families of YA with MBDDs.

Approximately 70% of families of autistic YAs reported their family member was always able to see health professionals when needed, similar to families of autistic adults but significantly lower than families of peers with MBDDs. Only 55% of families of autistic YAs felt the primary care doctor understood needs related to their family member’s disability, similar to families of autistic adults, both significantly lower rates than families of MBDD peers.

Black autistic YAs had >3 times higher odds of consistent health care compared with White peers (Table 3). YAs had 65% higher odds of consistent health care if they lived in a rural area and ∼33% lower odds if they had a co-occurring health condition or if they needed extensive supports with personal care. Autistic adults had nearly 40% lower odds of consistent care if they needed extensive supports for challenging behavior and 33% lower odds if they had a psychiatric disorder.

We found that nearly one-third of autistic YAs who lived with family members and received state DD services had difficulty consistently accessing needed health care, which is a higher rate than MBDD peers. This finding echoed previous research that found lower rates of preventive care among DD service users who live with family.¹⁰  State DD services are typically funded through Medicaid Home and Community Based Service (HCBS) waivers. These waivers expand eligibility for needed services and reduce unmet health care needs in autistic children.¹¹  However, it is unclear how HCBS waivers may differentially prioritize, require, or support medical care for adults unless the individual is enrolled in a managed care program that includes physical and behavioral health service packages.

Increased access to health care seen in young, Black autistic individuals may reflect newer Medicaid-managed care models which have sought to increase the use of community-based health services in an effort to decrease high levels of emergency department use and hospitalizations in adults with DD.¹²  States have also initiated campaigns to facilitate transition into HCBS services for students with DDs who are leaving high school at age 21, such as Pennsylvania’s High School Graduate Initiative, avoiding lengthy waitlists for services and supports. Expansion and innovation of HCBS services is critical for reducing gaps in access to care for autistic individuals across their adult years, as is increased training for practitioners.

Lowered odds of consistent care for autistic adults with complex health and behavioral challenges are concerning. Rates of health conditions were higher in adults in our study, signaling the importance of upstream preventive care. Most co-occurring conditions examined in this study are ambulatory care sensitive conditions, which should not result in hospitalization if there is adequate primary care. Yet, emergency department use and hospitalization for ambulatory care sensitive conditions are elevated in autistic adults and adults with MBDDs.¹²  We note that surveillance activities and focus on unequal care could improve if the federal government recognizes people with DDs as a federally designated medically underserved population, as advocated by the American Medical Association.

Unmet service needs and low satisfaction among families of autistic YAs may signal lower-quality care. People with disabilities who live in congregate care settings benefit from regulatory requirements for routine health care, but families may need additional supports to achieve routine health care schedules at home. It is imperative that health providers refer families to state DD services that could help provide care coordination.

This study has several limitations. Findings only generalize to autistic adults who use DD services and do not represent those who do not receive DD services or do not live with family members. The prevalence of co-occurring health conditions was likely underestimated because the AFS did not explore obesity or gastrointestinal issues common in this population. Additionally, there was no measure of overall health or information on the use of specialty care. It is possible that families who use more specialty care may rely less on primary care visits. We were unable to control for insurance type or the potential that individuals under age 26 were insured via their parents’ plans; however, most adult DD service users are funded through HCBS waivers.

AFS

adult family survey

DD

developmental disabilities

HCBS

home and community based services

IV

independent variable

MBDD

mental, behavioral or developmental disabilities

NCI

National Core Indicators

YA

young adult