Autism and other autism spectrum disorders (ASD) are complex developmental disorders characterized by repetitive behavior and delayed social interaction and communication. Autism affects approximately 1 in 110 children, with symptoms occurring as early as 18 months of age and continuing throughout the individual's life. Although there is no consensus about the most effective treatments for ASD, studies have shown early intervention to enhance cognitive and adaptive functioning and early educational attainment. Who pays for ASD services, however, is often unclear. There are considerable differences in states'approaches to financing ASD services and supporting programs for children with ASD. Many states have implemented Home and Community Based Services (HCBS) waivers under their Medicaid programs, which expand coverage to children with ASD who might not otherwise qualify for Medicaid or have access to specialized services. There is considerable variation across states, however, in the number of children included and the services offered. In addition, some states have passed legislation requiring private insurers, who traditionally have limited or excluded coverage for individuals with ASD, to cover specific ASD services or to provide coverage at a level on par with other disorders. The challenges in identifying, accessing, navigating and paying for ASD services available in a given community, given the complexity of a child's needs, available services, and these financing arrangements, can place a substantial burden on parents and caregivers of children with ASD. Although previous studies have examined satisfaction with care and the impact of having a child with ASD on parental income and employment, little is known about the effects of state policies regarding coverage and financing of services for children with ASD on these outcomes, or whether these effects differ by race/ethnicity. This study would explore these effects using data from multiple waves of two national surveys of children's health: the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health. Data from these surveys span the period 2001 through 2011, a time when many states implemented Medicaid waiver programs and passed insurance coverage mandates for ASD. We will examine the effects of these policies on access to care, satisfaction and family burden among children with ASD and their families in both publicly and privately insured populations. We will also explore whether characteristics of the waivers (e.g., eligibility criteria, benefit limits, etc.) or of the mandates (e.g., coverage lmits, whether specific services [such as physical therapy, speech therapy or applied behavioral analysis] must be covered, etc.) are associated with changes in access to care, family burden and satisfaction, and whether these effects differ by race/ethnicity. In addition to informing futue Medicaid HCBS waivers and insurance coverage mandates, the results of the study will be instrumental in implementing the Federal Mental Health Parity and Addiction Equity Act and health care reform.

Public Health Relevance

The challenges in identifying, accessing, navigating and paying for ASD services available in a given community, given the complexity of a child's needs, available services, and financing arrangements, can place a substantial burden on parents and caregivers of children with ASD. Although previous studies have examined satisfaction with care and the impact of having a child with ASD on parental income and employment, little is known about the effects of state policies regarding coverage and financing of services for children with ASD on these outcomes, or whether these effects differ by race/ethnicity. This study would explore these effects using data from multiple waves of two national surveys of children's health: the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health.

Agency
National Institute of Health (NIH)
Institute
National Institute of Mental Health (NIMH)
Type
Research Project (R01)
Project #
5R01MH097298-02
Application #
8546442
Study Section
Special Emphasis Panel (ZMH1-ERB-I (05))
Program Officer
Rupp, Agnes
Project Start
2012-09-20
Project End
2015-05-31
Budget Start
2013-06-01
Budget End
2014-05-31
Support Year
2
Fiscal Year
2013
Total Cost
$406,574
Indirect Cost
$66,489
Name
Pennsylvania State University
Department
Public Health & Prev Medicine
Type
Schools of Medicine
DUNS #
129348186
City
Hershey
State
PA
Country
United States
Zip Code
17033