Access, Quality and Financial Implications of the Transitions of Children with Autism

Kathleen Thomas, Ph.D., Principal Investigator

A growing foundation of evidence indicates that families of children with autism experience problems of access, financial burden and difficulties paying for health care and autism services, but little evidence positions these experiences in time as they relate to critical childhood milestones. There is some evidence that childhood transitions, into, through and out of school, are associated with increased family and child turmoil. Pinning down when episodes of difficulties with access and financial burden are likely to occur over the trajectory of childhood may inform development of policies that effectively improve access to care for these children.

The proposed study builds on our earlier research that identifies state-level Medicaid and private insurance strategies to improve access and reduce financial burden (Parish et al., 2011a; Parish et al., 2011b; Thomas, 2011). The proposed study will determine when families are most at risk of problems accessing care for their child and most at risk of incurring financial burden, to best target effective policy strategies.

The goal of this study is to determine the access to care and financial implications of transitions of children with autism through the following aims:

1. To compile a rich source of data on children with autism and their families (n≈400) by pooling national panel data over time that describe service use and quality, expenditures and family finances, and that the investigators have used extensively;
2. To conduct multivariate analyses to examine the static and time-variant child and family factors that are associated with difficulties with access to care and financial burden; and
3. To map out the trajectory of difficulties with access, quality and financial burden for families with a child with autism over the course of childhood in order to inform development of interventions that improve access to care for these children by targeting interventions to times of greatest need.

This study makes strategic use of existing national data to compile a rich source of data on children with autism and their families. The compiled data will be unique in their combination of national representativeness, timeliness, health care expenditures and quality, financial detail and two-year timeframe. Findings will provide a map of the trajectory of difficulties in access, quality and financial burden for families with a child with autism over the course of childhood in order to inform policies that promote access to care for these children. These findings have particular relevance for underserved populations whose networks of support maybe more tenuous and susceptible to limited access and burden. Findings address Healthy People 2020 objectives regarding access to care (AHS6), the quality of care received (AHS7), and children’s receipt of mental health services (MHMD6) in particular (USDHHS, 2011).