Maternal and Child Health Research Program

Division of Research, Office of Epidemiology and Research

Advancing Applied MCH Research

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(SDAS) Autism Insurance Policy and Access to Care for Children with Autism: A State Level Analysis

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Project Number: R40 MC 17158-01
Grantee: University of North Carolina at Chapel Hill
Department/Center: Sheps Center for Hlth Svcs Res/Health Affairs
Project Date: 2/1/2010

Final Report


Principal Investigator

Kathleen Thomas, PhD
Research Fellow
CB 7590, Sheps Center for Hlth Svcs Res/Health Affairs, 725 MLK Jr Blvd
Chapel Hill, NC  27599-7590
Phone: Kathleen Thomas (919) 966-3387


  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)


Our proposal addresses MCHB/HRSA's priority interest in autism service systems and infrastructure. The issue of concern is that families with children with autism have a more difficult time finding and paying for services than other families with children with special health care needs. To what extent is state insurance policy on autism associated with better access for children with autism? The proposed study seeks to answer this question through three specific aims: 1. Assess whether access to care for children with autism varies across states, 2. Assess the extent that state characteristics, such as insurance policy on autism, enhance access to care for children with autism, and 3. Indentify the states that have achieved the best access to care for children with autism for future study. Data from the 2005-2006 National Survey of Children with Special Health Care Needs (NSCSHCN) will be augmented with data on state autism insurance policy features to allow an analysis of the association between state autism policy and access to care for families with children with autism compared to families with children with other special health care needs. The NSCSHCN is a complex, multistage sample of children with special health care needs, including autism, representative of the nation as well as each state and the District of Columbia. Multilevel regression will be used to correct for the nonindependence of family-level observations nested within states, and assess the contribution of family and state variables on access to care. This will be the first national study of autism policy tied to outcomes for families. The proposed study can move the field forward in a short timeframe by filling in the big picture of autism state policy impacts. Findings identifying state policies associated with better access to care for children with autism, and those states where the constellation of policies is associated with better access. Findings generate hypotheses for future studies to determine why these policies work. The need to develop our understanding of what insurance policies work for autism is pressing. The Autism Treatment Acceleration Act (ATAA), recently introduced in the US Congress, calls for private insurance coverage of the diagnosis and treatment of autism. The proposed study provides important insights for policy design and future study of access to care for children with autism.


Listed is descending order by year published.

Parish S, Thomas K, Rose R, Kilany M, McConville R. State insurance parity legislation for autism services and family financial burden. Intellect Dev Disabil. 2012 Jun;50(3):190-8.

Parish SL, Thomas KC, Rose R, Kilany M, Shattuck PT. State Medicaid spending and financial burden of families raising children with autism. Intellect Dev Disabil. 2012 Dec;50(6):441-51.

Thomas KC, Parish SL, Rose RA, Kilany M. Access to care for children with autism in the context of state Medicaid reimbursement. Matern Child Health J. 2012; 16: 1636-44.


Autism, Developmental Disabilities, Special Health Care Needs, Insurance Coverage, Access to Health Care

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