Different Definitions of Developmental Disability and Implications for Outcomes

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Ne'eman, A. & Clark, H. H. (2025). Different Definitions of Developmental Disability and Implications for Outcomes. JAMA Health Forum, 6(12), e255642. https://doi.org/10.1001/jamahealthforum.2025.5642

Publication date: 19 Dec 2025 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
2
Publication authors identified as autistic
1 / 2 (50.0%)
  1. Ari Ne'eman *
  2. H. H. Clark

Abstract

Importance: Populations identified under varying definitions of developmental disability (DD) differ in notable dimensions. Understanding these crucial differences is necessary when deciding which definition to utilize for policy analysis or service planning. Objective: To examine the distributive implications of 4 different potential definitions of DD using data from the 2023 Survey of Income and Program Participation (SIPP) and the University of Minnesota's Residential Information Systems Project (RISP). Design, Setting, and Participants: Cross-sectional study of the 2023 SIPP in the US general population, including institutionalized persons, using supplemental information from 2019 RISP reports. Analyses used person-level weights, and 95% CIs were logit-transformed. The 4 definitions of DD are based on self-reported medical diagnoses of those who answered affirmatively to at least 1 of 18 disability screener questions. The narrowest definition captures cerebral palsy, intellectual disability, and/or autism diagnoses, while the broadest definition also includes epilepsy, learning disability diagnoses, and/or those identified by the SIPP learning and developmental disability screener question. Main Outcomes and Measures: Outcomes include DD prevalence, utilization of long-term services and supports (LTSS), congregate residential facilities, and income support (Supplemental Security Income/Social Security Disability Insurance), self-reported employment, and impairment characteristics. Results: In the study population of 2535 children and young adults aged 5 to 21 years (1285 [50.7%] males and 1250 [49.3%] females) and 9701 adults aged 22 years or older (4617 [47.6%] males and 5084 [52.4%] females), childhood and young adulthood prevalence of DD ranged from 4.17% (95% CI, 3.41%-5.09%) using the narrowest definition to 15.93% (95% CI, 14.43%-17.55%) using the broadest definition. For adults, DD prevalence varied from 1.24% (95% CI, 1.01%-1.52%) to 8.10% (95% CI, 7.48%-8.77%). Under the narrowest definition, 20.35% (95% CI, 16.67%-24.89%) of children and young adults with DD and 33.05% (95% CI, 26.87%-40.30%) of adults with DD were eligible for LTSS from a state DD agency and 0.98% (95% CI, 0.80%-1.20%) of children and young adults with DD and 9.82% (95% CI, 7.99%-11.98%) of adults with DD were estimated to be residing in a congregate residential setting. As definitions became more comprehensive, employment increased while LTSS eligibility, congregate setting placement, income support receipt (Supplemental Security Income/Social Security Disability Insurance), and functional impairment acuity decreased. Conclusions and Relevance: Results of this cross-sectional study of US children and young adults suggest that definition choice substantially affects DD prevalence estimates and the relevance of identified populations for service provision and community integration. A narrower approach may better capture individuals at greatest risk of segregation and who are most likely to utilize publicly funded DD services.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
22
Total cited references integrated for this publication.
Cited references with an identified autistic author
3 / 22 (13.6%)
Cited author occurrences identified as autistic
4 / 93 (4.3%)
Among occurrences linked to AutiHub author records: 4 / 8 (50.0%). Distinct cited authors identified as autistic: 3 / 91 (3.3%).
Cited author occurrences linked to AutiHub author records
8 / 93 (8.6%)
Distinct linked cited authors: 6 / 91 (6.6%)
Linked cited-author occurrences not identified as autistic
4 / 8 (50.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 4 / 93 (4.3%). Distinct linked cited authors not identified as autistic: 3 / 6 (50.0%).
2 cited bibliography entries could not be fully enriched from DOI metadata.
Crossref: not found (1) · DataCite: not found (1)
  1. David Braddock (2007). Washington rises: Public financial support for intellectual disability in the United States, 1955–2004 . Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 169-177. Wiley.
    Type: Article DOI: 10.1002/mrdd.20150 OpenAlex: https://openalex.org/W2077265906
    Crossref OpenAlex
  2. Sheryl A. Larson , K. Charlie Lakin , Lynda Anderson , Nohoon Kwak Lee , Jeoung Hak Lee , Deborah Anderson (2001). Intentional Communication Elicits Language-Facilitating Maternal Responses in Dyads With Children Who Have Developmental Disabilities . Am J Ment Retard, 106(3), 231.
    Type: Article DOI: 10.1352/0895-8017(2001)106 OpenAlex: https://openalex.org/W2055331785 Crossref: not found DataCite: not found
    Crossref OpenAlex
  3. Coleen A. Boyle , Sheree Boulet , Laura A. Schieve , Robin A. Cohen , Stephen J. Blumberg , Marshalyn Yeargin-Allsopp et al. (2011). Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008 . Pediatrics, 127(6), 1034-1042. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2010-2989 OpenAlex: https://openalex.org/W2126206176
    Crossref OpenAlex
  5. Marc J. Tassé , Susan M. Havercamp , Gloria Krahn , Karrie A. Shogren , Alexandra Bonardi , Minje Kim et al. (2025). About Whom Are We Talking When We Use Intellectual and Developmental Disabilities? JAMA Pediatrics, 179(1), 83. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2024.4552 OpenAlex: https://openalex.org/W4404691218
    Crossref OpenAlex
  6. Alexandra Bonardi , Susan L. Abend , Ari Ne'eman * (2024). Healthcare access and delivery for people with intellectual and developmental disability in the United States: Policy, payment, and practice considerations . Journal of Policy and Practice in Intellectual Disabilities, 21(2). Wiley.
    Type: Article DOI: 10.1111/jppi.12487 OpenAlex: https://openalex.org/W4391359718
    Crossref OpenAlex
  7. Zablotsky (2023). Diagnosed developmental disabilities in children aged 3–17 years: United States, 2019–2021. NCHS Data Brief, (473), 1.
    Type: Other
    Crossref
  8. Wehman (2018). Toward competitive employment for persons with intellectual and developmental disabilities: what progress have we made and where do we need to go. Res Pract Pers Severe Disabl, 43(3), 131.
    Type: Other
    Crossref
  9. DuBois (2025). An observational investigation of unemployment, underemployment, and competitive integrated employment of people with intellectual and developmental disabilities in 2021-2022. Disabil Health J, 18(3S).
    Type: Other
    Crossref
  10. Gettings (2011). Forging a Federal-State Partnership: A History of Federal Developmental Disabilities Policy . Forging a Federal-State Partnership: A History of Federal Developmental Disabilities Policy.
    Type: Other
    Crossref
  11. Shorter (2000). The Kennedy Family and the Story of Mental Retardation . The Kennedy Family and the Story of Mental Retardation.
    Type: Other
    Crossref
  12. (n.d.). Tarjan? G. Interview by Balter MS. UCLA Neuropsychiatric Institute and Hospital: George Tarjan. UCLA Center for Oral History Research. Accessed July 23, 2025. https://oralhistory.library.ucla.edu/catalog/21198-zz0008zj0x
    Type: Other
    Crossref
  13. (n.d.). Larson? SA, Neidorf? J, Pettingell? S, Sowers? M. Long-term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends Through Fiscal Year 2019. University of Minnesota, Institute on Community Integration; 2022.
    Type: Other
    Crossref
  14. (n.d.). Office of the Assistant Secretary for Planning and Evaluation, US Department of Health and Human Services. Improving data infrastructure for patient-centered outcomes research for people with intellectual and developmental disabilities. Published 2022. Accessed July 23, 2025. https://aspe.hhs.gov/sites/default/files/documents/dab8370bf95a35d678e6968de86f9ecd/idd-opportunities.pdf
    Type: Other
    Crossref
  15. (n.d.). US Census Bureau. Survey of Income and Program Participation (SIPP), 2023 data. US Department of Commerce
    Type: Other
    Crossref
  16. (n.d.). 2023. Accessed September 15, 2025. https://www.census.gov/programs-surveys/sipp/data/datasets/2023-data/2023.html
    Type: Other
    Crossref
  17. (n.d.). US Census Bureau. Annual estimates of the resident population by single year of age and sex for the United States: April 1, 2010 to July 1, 2019. US Department of Commerce. 2020. Accessed September 15, 2025. https://www.census.gov/data/datasets/time-series/demo/popest/2010s-national-detail.html
    Type: Other
    Crossref
  18. (n.d.). US Census Bureau. Annual estimates of the resident population by single year of age and sex for the United States: April 1, 2020 to July 1, 2023. US Department of Commerce
    Type: Other
    Crossref
  20. (n.d.). National Core Indicators. In-Person Survey (IPS) data, 2017–2023. Human Services Research Institute and National Association of State Directors of Developmental Disabilities Services; 2022. Accessed under data use agreement. Accessed September 15, 2025. https://idd.nationalcoreindicators.org/in-person-individual/
    Type: Other
    Crossref
  21. (n.d.). Ne’eman? A. Identifying, evaluating and remediating “settings that isolate” in the context of CMS guidance on heightened scrutiny requirements within the HCBS Settings Rule. Community Living Policy Center, Lurie Institute for Disability Policy, Brandeis University. 2020. Accessed July 23, 2025. https://scholarworks.brandeis.edu/esploro/outputs/report/Identifying-Evaluating-and-Remediating--Settings/9924116285101921
    Type: Other
    Crossref
  22. (n.d.). Chronic Conditions Data Warehouse. Other chronic health, mental health, and potentially disabling conditions. CCW Data. Accessed September 15, 2025. https://www2.ccwdata.org/web/guest/condition-categories-other
    Type: Other
    Crossref