Disparities in Transition Planning for Youth With Autism Spectrum Disorder

Cheak-Zamora, Nancy C.; Yang, Xuejing; Farmer, Janet E.; Clark, Mary

doi:10.1542/peds.2012-1572

Cited by 120Adolescent and Pediatric HealthcareAutism Spectrum Disorder ResearchChild and Adolescent Health

Disparities in Transition Planning for Youth With Autism Spectrum Disorder

Cheak-Zamora, Nancy C., Yang, Xuejing, Farmer, Janet E., Clark, Mary·2013·Pediatrics

DOI 10.1542/peds.2012-1572

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Abstract

OBJECTIVE: Little is known about accessibility to health care transition (HCT) services for youth with autism spectrum disorder (ASD). This study expands our understanding by examining the receipt of HCT services in youth with ASD compared with youth with other special health care needs (OSHCN). METHODS: We used the 2005–2006 National Survey of Children with Special Health Care Needs to examine receipt of HCT services for youth (aged 12–17 years) with ASD and youth with OSHCN. Logistic regression analyses explored whether individual, family, or health system factors were associated with receipt of HCT services for youth with ASD. RESULTS: Whereas half of youth with OSHCN received HCT services, less than a quarter of youth with ASD did. Only 14% of youth with ASD had a discussion with their pediatrician about transitioning to an adult provider, less than a quarter had a discussion about health insurance retention, and just under half discussed adult health care needs or were encouraged to take on appropriate responsibility. Logistic regression analyses indicated that having a developmental disability or multiple health conditions in addition to ASD and quality of health care were strong predictors of HCT, whereas demographic and family variables accounted for little variance. CONCLUSIONS: Youth with ASD experience disparities in access to HCT services. Youth with comorbid conditions are at greatest risk for poor access to HCT services and increased quality of care has a positive effect. Research is needed to understand barriers to care and develop policy and practice guidelines tailored for youth with ASD.

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Healthcare transition services have been difficult to scale; one study found that only one-fifth of autistic youth received healthcare transition services.
“However, HCT services have been dif fi cult to scale -one study found that only one- fi fth of autistic youth received HCT services -and many youths with ASD face challenges accessing healthcare.”
From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [73]

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Authors: Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M.
Affiliations: Departments of Health Sciences and
Public Health Program, and
University of Missouri (US)
Corresponding author: Clark, Mary
ORCID: Farmer, Janet E.
Venue: Pediatrics
Publisher: American Academy of Pediatrics (AAP)
Published: 2013-03-01
Volume: 131
Issue: 3
Pages: 447-454
ISSN: 0031-4005 (ISSN-L)
1098-4275
DOI: 10.1542/peds.2012-1572
OpenAlex: W2167298162
Cited by: 120
References: 40
Citations by year: 2026: 4 · 2025: 6 · 2024: 6 · 2023: 7 · 2022: 13 · 2021: 14 · 2020: 24 · 2019: 6 · 2018: 10 · 2017: 8 · 2016: 6 · 2015: 7 · 2014: 6 · 2013: 3
FWCI: 16.80
Type: journal article
Language: en
Open access: closed
Locations: PEDIATRICS (publishedVersion)
PubMed (publishedVersion)
Funders: U.S. Public Health Service (H6MMC11059)
Topics: Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
Keywords: autism spectrum disorder, care transitions, transition planning, youth with special health care needs, health care disparities, health care access, transition to adult care, comorbidities, developmental disabilities, quality of care, National Survey of Children with Special Health Care Needs
MeSH terms: Adolescent, Child, Child Development Disorders, Pervasive, Continuity of Patient Care, Cross-Sectional Studies, Female, Health Services Accessibility, Humans, Male, Health Care Surveys, Needs Assessment, Healthcare Disparities

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Disparities in Transition Planning for Youth With Autism Spectrum Disorder

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