BACKGROUND

Autistic young adults (YAs) often live with family and present with complex health needs. Adults with developmental disabilities (DDs) who live with family are the least likely to receive preventive health care compared with 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 compared with 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.

What’s Known on This Subject

Autistic young adults often live with family and present with complex health needs. Adults with developmental disabilities, such as autism, who live with family are the least likely to receive preventive health care compared with residents of other settings.

What This Study Adds

Nearly one-third of autistic young adults receiving disability services and living at home had difficulty accessing health care (lower than peers with other disabilities). Odds of access were lower among those who had co-occurring health conditions or needed personal care.

Preventive health care services are vital for autistic young adults (YAs) given frequent co-occurring health and psychiatric conditions and early mortality.1,2  Few national datasets, however, allow for disability-specific surveillance of health care within populations of adults with mental, behavioral, or developmental disabilities (MBDDs), including autism.3  Family members of individuals with disabilities are a valuable source of health data; however, there is little published research regarding family perceptions on health care for autistic adults.

Approximately 87% of autistic YAs live with family, which is a higher rate than their peers with other types of disabilities.4  Adults with developmental disabilities (DDs) who live with family are the least likely to receive preventive health care visits compared with adults with DDs in other settings.5  Families often must navigate service systems on their own with inadequate health care transition planning and difficulty locating health professionals who understand autism.6,7 

Overall, there is limited understanding of health care experiences of autistic YAs who reside with family and receive state DD services. No published studies have examined the intersectionality between age, gender, race or ethnicity, household income, and health care needs in regard to health care access for this group. Among a cross-disability group of DD service users, African American and Hispanic adults were more likely to live with family and less likely to have an annual physical examination, whereas older age and a higher degree of intellectual disability predicted receipt of physicals.5 

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.

TABLE 1

Sociodemographics, Health Conditions, and Support Needs of DD Service Users Who Live in the Family Home by Age and Disability Type

YAs 18–25 yAdults ≥ 26 y
Autism, n (%)MBDD,an (%)PAutism, n (%)MBDD,an (%)P
Sex   <.001   <.001 
 Male 501 (73.0) 366 (54.1)  583 (69.1) 1303 (52.4)  
 Female 185 (27.0) 311 (45.9)  261 (30.9) 1185 (47.6)  
Race   .54   .036 
 White 516 (77.6) 507 (78.0)  617 (75.0) 1902 (79.3)  
 Black/African American 93 (14.0) 98 (15.1)  138 (16.8) 329 (13.7)  
 Other or multiple 56 (8.4) 45 (6.9)  68 (8.3) 169 (7.0)  
 Hispanic or Latino 44 (6.4) 49 (7.3) .52 37 (4.4) 114 (4.6) .82 
Highest level of education   .29   .023 
 In high school 112 (16.4) 100 (15.1)  0 (0.0) 2 (0.1)  
 Less than high school 48 (7.0) 44 (6.6)  119 (14.4) 439 (18.6)  
 High school certificate, no diploma or GED 209 (30.6) 232 (35.0)  337 (40.8) 848 (36.0)  
 High school diploma or GED 226 (33.1) 222 (33.5)  281 (34.1) 790 (33.5)  
 Postsecondary 87 (12.8) 65 (9.8)  88 (10.7) 276 (11.7)  
Co-occurring MBDD       
 Intellectual disability 414 (59.1) 502 (73.6) <.001 552 (64.9) 1876 (74.6) <.001 
 Mood or psychiatric disorder 238 (34.0) 127 (18.6) <.001 280 (32.9) 529 (21.0) <.001 
 Seizure disorder/neurologic 162 (23.0) 238 (34.9) <.001 262 (30.8) 793 (31.5) .68 
 Visual or hearing impairment 50 (7.1) 128 (18.8) <.001 84 (9.9) 427 (17.0) <.001 
 Health conditions       
 High blood pressure 50 (7.1) 128 (18.8) .02 120 (31.6) 456 (30.9) .79 
 High cholesterol 34 (14.5) 31 (9.6) .076 113 (29.7) 410 (27.8) .44 
 Oral health or dental problems 31 (13.2) 31 (9.6) .18 55 (14.5) 187 (12.7) .35 
 Diabetes 29 (12.4) 16 (5.0) .002 65 (17.1) 289 (19.6) .28 
 Cardiovascular disease 25 (10.7) 56 (17.4) .027 38 (10.0) 164 (11.1) .54 
Communication   .074   <.001 
 Spoken 487 (71.5) 492 (74.7)  612 (73.3) 1951 (79.8)  
 Gestures/body language 140 (20.6) 105 (15.9)  165 (19.8) 355 (14.5)  
 Other 54 (7.9) 62 (9.4)  58 (6.9) 140 (5.7)  
Supports needs: behavior   <.001   <.001 
 None 220 (32.4) 397 (59.8)  312 (37.3) 1588 (64.9)  
 Some 276 (40.6) 177 (26.7)  324 (38.7) 612 (25.0)  
 Extensive 184 (27.1) 90 (13.6)  201 (24.0) 246 (10.1)  
Support needs: personal care   .025   .097 
 None 145 (21.1) 132 (19.5)  199 (23.6) 678 (27.3)  
 Some 276 (40.2) 234 (34.6)  322 (38.2) 911 (36.7)  
 Extensive 266 (38.7) 310 (45.9)  323 (38.3) 891 (35.9)  
Support needs: daily activities   .78   .007 
 None 25 (3.6) 29 (4.3)  34 (4.0) 126 (5.1)  
 Some 110 (16.0) 103 (15.3)  159 (18.8) 572 (23.2)  
 Extensive 551 (80.3) 543 (80.4)  653 (77.2) 1763 (71.6)  
Guardianship   .24   <.001 
 None 195 (28.9) 176 (27.1)  231 (28.9) 760 (32.5)  
 Limited guardianship 82 (12.1) 61 (9.4)  58 (7.3) 255 (10.9)  
 Full guardianship 374 (55.4) 392 (60.3)  477 (59.8) 1256 (53.7)  
 Guardian but level unknown 24 (3.6) 21 (3.2)  32 (4.0) 66 (2.8)  
 Self-directed services 303 (50.3) 272 (46.7) .22 315 (44.6) 869 (42.5) .33 
YAs 18–25 yAdults ≥ 26 y
Autism, n (%)MBDD,an (%)PAutism, n (%)MBDD,an (%)P
Sex   <.001   <.001 
 Male 501 (73.0) 366 (54.1)  583 (69.1) 1303 (52.4)  
 Female 185 (27.0) 311 (45.9)  261 (30.9) 1185 (47.6)  
Race   .54   .036 
 White 516 (77.6) 507 (78.0)  617 (75.0) 1902 (79.3)  
 Black/African American 93 (14.0) 98 (15.1)  138 (16.8) 329 (13.7)  
 Other or multiple 56 (8.4) 45 (6.9)  68 (8.3) 169 (7.0)  
 Hispanic or Latino 44 (6.4) 49 (7.3) .52 37 (4.4) 114 (4.6) .82 
Highest level of education   .29   .023 
 In high school 112 (16.4) 100 (15.1)  0 (0.0) 2 (0.1)  
 Less than high school 48 (7.0) 44 (6.6)  119 (14.4) 439 (18.6)  
 High school certificate, no diploma or GED 209 (30.6) 232 (35.0)  337 (40.8) 848 (36.0)  
 High school diploma or GED 226 (33.1) 222 (33.5)  281 (34.1) 790 (33.5)  
 Postsecondary 87 (12.8) 65 (9.8)  88 (10.7) 276 (11.7)  
Co-occurring MBDD       
 Intellectual disability 414 (59.1) 502 (73.6) <.001 552 (64.9) 1876 (74.6) <.001 
 Mood or psychiatric disorder 238 (34.0) 127 (18.6) <.001 280 (32.9) 529 (21.0) <.001 
 Seizure disorder/neurologic 162 (23.0) 238 (34.9) <.001 262 (30.8) 793 (31.5) .68 
 Visual or hearing impairment 50 (7.1) 128 (18.8) <.001 84 (9.9) 427 (17.0) <.001 
 Health conditions       
 High blood pressure 50 (7.1) 128 (18.8) .02 120 (31.6) 456 (30.9) .79 
 High cholesterol 34 (14.5) 31 (9.6) .076 113 (29.7) 410 (27.8) .44 
 Oral health or dental problems 31 (13.2) 31 (9.6) .18 55 (14.5) 187 (12.7) .35 
 Diabetes 29 (12.4) 16 (5.0) .002 65 (17.1) 289 (19.6) .28 
 Cardiovascular disease 25 (10.7) 56 (17.4) .027 38 (10.0) 164 (11.1) .54 
Communication   .074   <.001 
 Spoken 487 (71.5) 492 (74.7)  612 (73.3) 1951 (79.8)  
 Gestures/body language 140 (20.6) 105 (15.9)  165 (19.8) 355 (14.5)  
 Other 54 (7.9) 62 (9.4)  58 (6.9) 140 (5.7)  
Supports needs: behavior   <.001   <.001 
 None 220 (32.4) 397 (59.8)  312 (37.3) 1588 (64.9)  
 Some 276 (40.6) 177 (26.7)  324 (38.7) 612 (25.0)  
 Extensive 184 (27.1) 90 (13.6)  201 (24.0) 246 (10.1)  
Support needs: personal care   .025   .097 
 None 145 (21.1) 132 (19.5)  199 (23.6) 678 (27.3)  
 Some 276 (40.2) 234 (34.6)  322 (38.2) 911 (36.7)  
 Extensive 266 (38.7) 310 (45.9)  323 (38.3) 891 (35.9)  
Support needs: daily activities   .78   .007 
 None 25 (3.6) 29 (4.3)  34 (4.0) 126 (5.1)  
 Some 110 (16.0) 103 (15.3)  159 (18.8) 572 (23.2)  
 Extensive 551 (80.3) 543 (80.4)  653 (77.2) 1763 (71.6)  
Guardianship   .24   <.001 
 None 195 (28.9) 176 (27.1)  231 (28.9) 760 (32.5)  
 Limited guardianship 82 (12.1) 61 (9.4)  58 (7.3) 255 (10.9)  
 Full guardianship 374 (55.4) 392 (60.3)  477 (59.8) 1256 (53.7)  
 Guardian but level unknown 24 (3.6) 21 (3.2)  32 (4.0) 66 (2.8)  
 Self-directed services 303 (50.3) 272 (46.7) .22 315 (44.6) 869 (42.5) .33 

Data source: NCI Adult Family Survey 2018–2019 States: AZ, GA, LA, MD, MN, MO, NC, OH, OK, PA, UT, VA.

a

MBDD group included adults with intellectual disability, mood illness or psychiatric disorder, cerebral palsy, limited or no vision, severe or profound hearing loss, brain injury, seizure disorder or neurologic problem, chemical dependency, Down Syndrome, Prader-Willi Syndrome, fetal alcohol spectrum disorder, and other. The MBDD group excluded persons with co-occurring 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.

TABLE 2

Sociodemographics, Support Needs and Perceptions of Family Members of DD Service Users Who Live at Home by Age of Service Users and Disability Type

YAs 18–25 yAdults ≥ 26 y
Autism, n (%)MBDD,an (%)PAutism, n (%)MBDD,an (%)P
Level of education   .696   <.001 
 No high school diploma/GED 31 (4.5) 34 (5.1)  35 (4.2) 168 (6.8)  
 High school diploma/GED 124 (17.9) 133 (20.0)  168 (20.3) 740 (30.1)  
 Vocational school or certificate 51 (7.4) 49 (7.4)  51 (6.2) 177 (7.2)  
 Other postsecondary education 487 (70.3) 449 (67.5)  575 (69.4) 1372 (55.8)  
Geography   .019   .002 
 Urban or suburban 489 (71.1) 433 (65.1)  582 (70.7) 1581 (64.8)  
 Rural 199 (28.9) 232 (34.9)  241 (29.3) 860 (35.2)  
Household taxable income in past year, $   .077   <.001 
 25 000 or less 120 (17.5) 139 (20.9)  193 (23.5) 784 (32.7)  
 25 001–50 000 117 (17.1) 113 (17.0)  156 (19.0) 458 (19.1)  
 50 001–75 000 95 (13.9) 110 (16.5)  116 (14.1) 292 (12.2)  
 > 75 000 238 (34.7) 187 (28.1)  181 (22.1) 330 (13.8)  
 Prefer not to say 115 (16.8) 117 (17.6)  174 (21.2) 536 (22.3)  
Family reports getting needed supports and services 425 (69.2) 446 (74.0) .067 542 (74.3) 1752 (81.1) <.001 
Family is satisfied with the services/supports the family member receives   .003   .002 
 Always 176 (26.0) 215 (32.7)  272 (33.0) 930 (38.4)  
 Usually 335 (49.4) 323 (49.2)  406 (49.2) 1162 (48.0)  
 Sometimes/never 167 (24.6) 119 (18.1)  147 (17.8) 330 (13.6)  
Family needs help planning for family member’s medical issues 178 (33.7) 116 (24.7) .002 196 (33.1) 407 (30.1) .19 
Family feels doctor understands needs related to the disability   .034   <.001 
 Always 368 (55.4) 415 (62.4)  871 (57.9) 2055 (65.9)  
 Usually 224 (33.7) 200 (30.1)  488 (32.4) 900 (28.9)  
 Sometimes/never 60 (9.0) 44 (6.6)  126 (8.4) 137 (4.4)  
Family believes loved one can see health professionals when needed   .024   <.001 
 Always 476 (69.5) 514 (75.9)  1085 (70.5) 2513 (79.5)  
 Usually 176 (25.7) 141 (20.8)  378 (24.6) 560 (17.7)  
 Sometimes/never 33 (4.8) 22 (3.2)  75 (4.9) 88 (2.8)  
YAs 18–25 yAdults ≥ 26 y
Autism, n (%)MBDD,an (%)PAutism, n (%)MBDD,an (%)P
Level of education   .696   <.001 
 No high school diploma/GED 31 (4.5) 34 (5.1)  35 (4.2) 168 (6.8)  
 High school diploma/GED 124 (17.9) 133 (20.0)  168 (20.3) 740 (30.1)  
 Vocational school or certificate 51 (7.4) 49 (7.4)  51 (6.2) 177 (7.2)  
 Other postsecondary education 487 (70.3) 449 (67.5)  575 (69.4) 1372 (55.8)  
Geography   .019   .002 
 Urban or suburban 489 (71.1) 433 (65.1)  582 (70.7) 1581 (64.8)  
 Rural 199 (28.9) 232 (34.9)  241 (29.3) 860 (35.2)  
Household taxable income in past year, $   .077   <.001 
 25 000 or less 120 (17.5) 139 (20.9)  193 (23.5) 784 (32.7)  
 25 001–50 000 117 (17.1) 113 (17.0)  156 (19.0) 458 (19.1)  
 50 001–75 000 95 (13.9) 110 (16.5)  116 (14.1) 292 (12.2)  
 > 75 000 238 (34.7) 187 (28.1)  181 (22.1) 330 (13.8)  
 Prefer not to say 115 (16.8) 117 (17.6)  174 (21.2) 536 (22.3)  
Family reports getting needed supports and services 425 (69.2) 446 (74.0) .067 542 (74.3) 1752 (81.1) <.001 
Family is satisfied with the services/supports the family member receives   .003   .002 
 Always 176 (26.0) 215 (32.7)  272 (33.0) 930 (38.4)  
 Usually 335 (49.4) 323 (49.2)  406 (49.2) 1162 (48.0)  
 Sometimes/never 167 (24.6) 119 (18.1)  147 (17.8) 330 (13.6)  
Family needs help planning for family member’s medical issues 178 (33.7) 116 (24.7) .002 196 (33.1) 407 (30.1) .19 
Family feels doctor understands needs related to the disability   .034   <.001 
 Always 368 (55.4) 415 (62.4)  871 (57.9) 2055 (65.9)  
 Usually 224 (33.7) 200 (30.1)  488 (32.4) 900 (28.9)  
 Sometimes/never 60 (9.0) 44 (6.6)  126 (8.4) 137 (4.4)  
Family believes loved one can see health professionals when needed   .024   <.001 
 Always 476 (69.5) 514 (75.9)  1085 (70.5) 2513 (79.5)  
 Usually 176 (25.7) 141 (20.8)  378 (24.6) 560 (17.7)  
 Sometimes/never 33 (4.8) 22 (3.2)  75 (4.9) 88 (2.8)  

Data source: NCI Adult Family Survey 2018–2019 States: AZ, GA, LA, MD, MN, MO, NC, OH, OK, PA, UT, VA.

a

MBDD group included adults with intellectual disability, mood illness or psychiatric disorder, cerebral palsy, limited or no vision, severe or profound hearing loss, brain injury, seizure disorder or neurologic problem, chemical dependency, Down Syndrome, Prader-Willi Syndrome, fetal alcohol spectrum disorder, and other. The MBDD group excluded persons with co-occurring autism.

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.

TABLE 3

Relationship Between Sociodemographic Factors of Autistic DD Service Users and Their Families, Complexity of Health Care Needs of the Service User, and Family-Reported Access to Health Care

YAs 18–25 yAdults ≥ 26 y
OR95% CIOR95% CI
Sociodemographics of service user     
 Race — — — — 
 White — — 
 Black/African American 3.27*** 1.71–6.25 0.8 0.51–1.25 
 Other 0.92 0.49–1.74 1.14 0.61–2.11 
 Hispanic 0.80 0.27–2.37 0.83 0.32–2.13 
Sociodemographics of family/household     
 Family member has high school education or less 1.05 0.66–1.66 1.23 0.81–1.87 
 Family lives in a rural area 1.65* 1.10–2.45 1.11 0.77–1.60 
Household income     
 ≤ 25 000 — — 
 25 001–50 000 1.04 0.55–1.95 0.84 0.51–1.39 
 50 001–75 000 0.91 0.48–1.75 0.87 0.50–1.51 
 > 75 000 1.53 0.87–2.69 1.22 0.73–2.04 
 Prefer not to say 1.66 0.88–3.16 1.00 0.60–1.65 
Complexity of health care needs of service user     
 Has intellectual disability 1.40 0.96–2.04 0.98 0.68–1.41 
 Has mood or psychiatric disorder 1.17 0.79–1.73 0.67* 0.47–0.96 
 Has at least 1 co-occurring chronic physical health conditiona 0.67* 0.45–0.99 1.12 0.84–1.48 
 Extensive need for support with challenging behavior 0.80 0.51–1.24 0.62* 0.42–0.93 
 Extensive need for support with personal care 0.66* 0.44–1.00 0.95 0.65–1.37 
YAs 18–25 yAdults ≥ 26 y
OR95% CIOR95% CI
Sociodemographics of service user     
 Race — — — — 
 White — — 
 Black/African American 3.27*** 1.71–6.25 0.8 0.51–1.25 
 Other 0.92 0.49–1.74 1.14 0.61–2.11 
 Hispanic 0.80 0.27–2.37 0.83 0.32–2.13 
Sociodemographics of family/household     
 Family member has high school education or less 1.05 0.66–1.66 1.23 0.81–1.87 
 Family lives in a rural area 1.65* 1.10–2.45 1.11 0.77–1.60 
Household income     
 ≤ 25 000 — — 
 25 001–50 000 1.04 0.55–1.95 0.84 0.51–1.39 
 50 001–75 000 0.91 0.48–1.75 0.87 0.50–1.51 
 > 75 000 1.53 0.87–2.69 1.22 0.73–2.04 
 Prefer not to say 1.66 0.88–3.16 1.00 0.60–1.65 
Complexity of health care needs of service user     
 Has intellectual disability 1.40 0.96–2.04 0.98 0.68–1.41 
 Has mood or psychiatric disorder 1.17 0.79–1.73 0.67* 0.47–0.96 
 Has at least 1 co-occurring chronic physical health conditiona 0.67* 0.45–0.99 1.12 0.84–1.48 
 Extensive need for support with challenging behavior 0.80 0.51–1.24 0.62* 0.42–0.93 
 Extensive need for support with personal care 0.66* 0.44–1.00 0.95 0.65–1.37 

Logistic regression using generalized estimating equations to control for clustering within states. CI, confidence interval; OR, odds ratio; —, not applicable.

a

Co-occurring health conditions include cardiovascular disease, cancer, high blood pressure, high cholesterol, dysphagia (difficulty swallowing), pressure ulcers, Alzheimer’s disease or other dementia, oral health problems, sleep apnea, or other health conditions not listed.

*

P < .05;

**

P < .01;

***

P < .001.

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.

Ms Roux conceptualized and designed the study, drafted the manuscript, and finalized the manuscript; Ms Rast conducted initial analyses and contributed to the methods and manuscript revisions; Dr Shea contributed content expertise for interpretation and discussion of the findings and contributed to revisions; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: This project is supported by the Health Resources and Services Administration of the US Department of Health and Human Services under cooperative agreement UT2MC39440, Autism Intervention Research Network on Physical Health and UJ2MC31073, Maternal and Child Health-Autism Transitions Research Project. The information, content, and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by Health Resources and Services Administration, US Department of Health and Human Services, or the US Government.

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

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Competing Interests

CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose.