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Calls to Action

Unmet Medical Needs and Financial Burden

in Families Touched by Autism Spectrum Disorder
September 21, 2009

In a study published in the December 2008 issue of Pediatrics, researchers surveyed families of children with special health care needs and reported significant differences between those families of children with Autism Spectrum Disorders (ASD) and those with other special health care needs. Families of children with special health care needs whose children had autism reported less access to key health care and family services, along with greater financial problems and less overall satisfaction with their child's care.

Using data collected through the National Survey of Children With Special Health Care Needs (CSHCN), researchers compared information reported on children with special health care needs that also had autism to either those that did not have autism or those that had different emotional, developmental or behavioral problems. All families in the survey responded to a series of questions regarding health care experiences, family and financial impact, as well as demographic variables and insurance coverage. The results clearly demonstrated that children with special health care needs with ASD were more likely to have problems with access to care resulting in unmet medical needs. These included difficulty receiving referrals and special health or family support services.

The magnitude of these differences was lessened when compared to children without autism who had emotional, developmental and behavioral problems; however, families of children with ASD still showed a higher increase in unmet needs for specific health care and family support services even in comparison to these families, probably because children with autism often have multiple concurrent health needs. Also, although all of the families surveyed had children with special health care needs, those with ASD were in the unique situation of needing additional income to cover the child's medical expenses and having to provide more time at home. In fact, parents of over half of the children with special health needs with ASD reported having to stop or reduce employment because of the child's needs. Overall, the result was greater financial burden on the families of children that had special health care needs with ASD.

This study is the first to document the unique challenges, financial burdens, and family employment consequences of ASD in the context of other children with special health care needs. While much effort is underway to identify the causes, treatments and cure for autism, this study suggests that major health care reform, including national quality improvement initiatives, is needed for children with emotional, developmental and behavioral problems, especially autism.

Kogan MD, et al. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics. 2008 Dec;122(6):e1149-58.