News and Knowledge

In 2012, OAR awarded a $30,000 one-year grant to Lucy Bilaver, Ph.D., an assistant professor of health administration at Northern Illinois University’s School of Nursing and Health Studies and an affiliated scholar at Chapin Hall at the University of Chicago. The goal of her study was to identify disparities in access to treatment for young children with autism spectrum disorder (ASD) in order to identify targets of intervention to reduce service disparities.

Study Synopsis

The data for study came from the Pre-Elementary Longitudinal Study (PEELS), a six-year longitudinal panel study of children receiving preschool special education services. The data included a nationally representative sample of 3,104 pre-school children, ages 3 to 5, who were followed across five waves of data beginning in the 2003-04 school year. The PEELS data comes from questionnaires completed by parents and teachers regarding services that the children receive both in and out of the school setting.

For the OAR study, Dr. Bilaver used data on 246 children with ASD in the 2003-04, 2004-05, and 2005-06 school years. The majority of children were white (73 percent), 20 percent were Hispanic, and 7 percent were African American. The majority (60 percent) had less severe forms of autism. Nearly all children had health insurance (27 percent public, 49 percent private only, and 21 percent with multiple types of health insurance). The majority of the children lived with two, married parents, and most mothers had at least some postsecondary education. Incomes were distributed fairly evenly along a spectrum, with slightly more families with incomes above $50,000 a year (39 percent). School districts of different sizes and wealth were also fairly evenly represented, with a slight tendency toward larger districts.

Findings

Dr. Bilaver did not find a strong link between parents’ religion, ethnicity, or income level and their use of autism treatments. The exception is educational background: mothers who had at least some college education were more likely to receive these services for their child from both the school system and outside sources. She also found little variation in treatment among health insurance companies.

What the study did reveal was that speech therapy is the most common service sought by parents for pre-school children, with approximately 90 percent of the children in the study receiving speech therapy in the 2003-04 school year, three-quarters of those getting therapy at school.

In contrast, only about 5 percent of the children were receiving behavioral therapy, and only about 1.3 percent of the children were getting that therapy at school.

While the findings point to fairly wide access to services among children with ASD, service use declines with age. By 2005-06, for example, only 75 percent of students were receiving speech therapy. The share of children receiving no services at all increased with time, from 10 percent at the outset of the study to 32 percent three years later.

Policy Implications

Although this study was not designed to explore why service use declines, Dr. Bilaver notes that the complexity and lack of centralized coordination of services may be contributing to this decline, as may the limited funding and confusion among parents and providers over “what works.”

Parents are often on their own to navigate the service options, including primary and specialty health care; early intervention and special education services; social, public health, and home health services; and other community resources such as child care and respite care. They are also on their own to figure out insurance policies, which often have sharp distinctions across policies.

As Dr. Bilaver notes, one solution may be a “medical home” for families seeking services for their children with ASD. Medical homes serve as centralized health care providers that focus on whole-person care and improved access to care, and work to coordinate care across all caregivers and related services, both in the community and in the health care system. Currently, only about one-fourth of children with autism currently receive care through a medical home.

Ultimately, the study reveals what most parents already know: that securing appropriate services for their children is a daunting task. For policymakers and autism organizations, the study illuminates the need to make finding and paying for services less complicated.