Unmet Need for Therapy Services Among Children with Autism Spectrum Disorder

April 8, 2015

One of the strategic research areas identified by the Maternal and Child Health Bureau is addressing health disparities and service access barriers among children with autism spectrum disorder (ASD). While studies examining access to family centered and specialty care exist for this population, there is less literature specifically addressing barriers to accessing therapy services for children with ASD relative to children with other special health care needs (CSHCN). Nearly 75% of children with ASD are reported to need occupational therapy (OT), physical therapy (PT), and/or speech therapy (ST) services to address functional and communication needs, and referral for these services is recognized by the American Academy of Pediatrics as part of appropriate care management for this population.

Research goals
This HRSA R40 Secondary Data Analysis Study examined population-based differences in need for and access to therapy services in children with ASD as compared to CSHCN across two cross-sectional waves of the National Survey for Children with Special Health Care Needs (NS-CSHCN; Centers for Disease Control & Prevention, National Center for Health Statistics). Utilizing both data waves (2005-2006 and 2009-2010) allowed for the examination of disparities in therapy need and access both before and after major policy and economic changes. Further, this investigation examined family and child characteristics that were associated with access to therapy services to develop a more clear understanding of barriers to and support for access.

Identification of need and unmet need for therapy
Need for therapy services was identified through a question on the survey that queried whether at any time in the past year the child in question had needed OT, PT, or ST ("therapy services"); unmet need was identified by a response of ‘no' when asked if the child had received all needed therapy services.
Child, family, and contextual characteristics
Child characteristics considered in this study included child age, race, ethnicity, and gender, as well as the degree of functional limitation the child experienced. Family characteristics included child insurance status and household poverty level, as well as whether the child received a well-child checkup in the prior year. Metropolitan statistical area was defined as either non-urban or urban, was used as a contextual characteristic.

Consistent with previous research on access among children with ASD, we found that children with ASD were significantly more likely to have an unmet need for therapy services compared to other CSHCN at both survey time points, even after controlling for child and family characteristics. Unique to this study was that the factor associated most with unmet need was not receiving a well-child visit from a pediatrician or other primary care provider in the past year. This finding points to the importance of the primary care practitioner in guiding families toward therapy services, and suggests a need for clear pathways to habilitative care for families of children with ASD.

An unexpected finding was that all children sampled in 2009 had greater odds of not receiving needed therapy services than children sampled in 2005, a finding which needs additional exploration in future data.

Children without health insurance and those with greater functional limitation were more like to not have received needed therapy services. However, children with public insurance, or both public and private insurance, were more likely to have received needed therapy services.
At this time, the research team has submitted results to peer-reviewed journals, and thus findings are to be interpreted cautiously until published.

Implications and future research
Children with ASD who do not see a primary care provider regularly, who demonstrate significant functional limitation, and who lack health insurance may at high risk for not receiving needed therapy services. Pediatricians have an important role to play in assisting families to identify potential support services, including occupational, speech, and physical therapy, that could address a child's functional needs. Future research should aim to identify system-level factors such as state-level variation in insurance mandates, provider density, and care pathways that impact access to therapy services.
This study was supported by grant R40MC26194-01-02 from the Maternal and Child Health Research Program, Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services to Thomas Jefferson University, Philadelphia, PA.

The Principal Investigator, Teal Benevides, PhD, MS, OTR/L, can be contacted at [email protected] Collaborators involved in this study include Henry Carretta, PhD, Shelly J. Lane, PhD, OTR/L, FAOTA, and Roseann C. Schaaf, PhD, OTR/L, FAOTA.