A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
Autism spectrum disorder (ASD) is a neurological and developmental disorder that begins early in childhood and lasts throughout a person's life. Children with ASD may receive a variety of services in school and through their health care providers to meet their developmental needs, including speech therapy, occupational therapy, social skills training, and behavioral and mental health services such as applied behavior analysis (ABA). However, many children with ASD may not have had access to these services due to insurance coverage, requiring families to pay for services themselves.
Since 2007, many states have enacted policies that require private health insurers to provide access to ASD-specific interventions, addressing significant barriers and reducing the financial burden on families. However, it is not always clear whether these services should be considered medical or educational and therefore, whether health insurers or school systems should pay for them. Understanding how and where children with ASD used services before these policies went into effect could help state governments to develop policies that ensure families have access to the most effective interventions in the most appropriate settings. One recent NIDILRR-funded study looked at whether and where young children with ASD in different communities were receiving these services prior to policy changes and how that information could offer direction for future policy changes.
The researchers examined data from the Pre-Elementary Education Longitudinal Study (PEELS) that followed a group of children ages 3 to 5 receiving preschool special education services over the course of 6 years from 2003 – 2009. The nationally representative sample data was originally collected through questionnaires sent to parents, teachers, and local educational agencies . For this specific study, the researchers looked at data collected from 2003 to 2006 to determine how many young children with ASD received ASD-specific services before key policies went into effect and what types of services they received. Of the more than 3,100 children followed in the PEELS study, 250 were identified as having ASD. The researchers examined whether these children received speech therapy, occupational therapy, behavior therapy, or mental health services and whether those services were received in school, outside of school, both inside and outside of school, or not at all. Finally, they looked at characteristics such as the age, race, and severity of disability of the children; insurance coverage, marital status, and income and education levels of the families; and size and socioeconomic level of the community.
The researchers found that speech therapy was the most common type of intervention received, while rates of behavioral therapy and mental health services received were substantially lower. Specifically, they found:
- In the 2003-2004 school year, 93% of the children tracked in the study received speech therapy and 77% received this service in school only. By 2005-2006, only 75% of the children in the study received speech therapy and the therapy was more likely to be received both inside and outside of school.
- Sixty-five percent of the children in the study received occupational therapy during one or more school years, primarily at school.
- Less than 6% of the children in the study received behavior therapy in any year and those who did were more likely to receive it outside of school.
- Only 11% of the children in the study received mental health services in any year, and those who did primarily received the services at school.
In general, when the researchers examined the characteristics of the children in the study, they found that children with more severe disabilities were more likely to receive services than those with less severe disabilities. Younger children were also more likely to receive services than older children. Children whose families had incomes above $50k were three times more likely to receive occupational therapy both inside and outside of school. Children whose mothers had some postsecondary education were more likely to receive speech therapy both inside and outside of school compared to those whose mothers had high school educations or less.
According to the authors, prior to the 2007 policy changes, many young children with ASD were likely to receive speech and occupational therapy, primarily in the school setting, but the majority did not receive behavioral therapy or mental health or social work services either inside or outside of school. They noted that this finding is concerning, given that mental health services and behavioral therapies such as early intensive behavioral interventions are the most widely recommended evidence-based treatment for children with ASD. The authors identified several barriers which may have prevented access to these key services: large caseloads for behavioral therapists in schools, lack of training in behavioral therapy among special education teachers, and resistance from private insurers to cover treatments. Insurance barriers have been addressed through state mandates to fund autism services through both private insurers and Medicaid home and community based waivers. Though these mandates vary across states, the authors noted that new data from the 2011 Survey of Pathways to Diagnosis and Services, collected by the National Center for Health Statistics, shows a significant increase in the rates of children with ASD receiving behavioral therapies. However, this new data also shows that more than half of children with ASD may still not receive the therapy they need.
Future research may help to determine whether and how state ASD mandates have improved access to and utilization of services for these families. As the majority of the students tracked in this study received some occupational and speech services in school, the authors suggested that increasing the capacity of schools to provide behavioral and mental health services would give families more options and increase the chance that children with ASD can benefit from those services.. Home-based behavioral services may offer another way to increase access, giving parents and caregivers tools to support their children’s mental and behavioral health.
To Learn More
The NIDILRR-funded project on Autism Services and Supports: Impact on Families Survey has developed a series of briefs for families on advocacy, case management, finances, health services, and informal supports: http://www.towson.edu/cla/departments/familystudies/documents/final_combined_family_briefs.pdf
Learn how insurance mandates are supporting children with ASD and their families: https://www.autismspeaks.org/science/science-news/study-suggests-insurance-mandates-help-close-gaps-autism-care
The Autistic Self-Advocacy Network has toolkits to help families advocate for policy changes: http://autisticadvocacy.org/home/asan-joins-letter-opposing-harmful-mental-health-bill/policy-advocacy-toolkits/
To Learn More About this Study
Bilaver, L.A., Cushing, L.S., and Cutler, A.T. (2016) Prevalence and correlates of educational intervention utilization among children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46, 561-571. This article is available from the NARIC collection under Accession Number J73543.