A decade ago, autism, a developmental disorder that can chronically alter a child’s social interactions, communication and learning skills, and behavior, was a rare and poorly understood disorder. The diagnosis came with few treatment options and poor prognosis for improvement. Children who never learned to speak or care for themselves were sometimes institutionalized.
However, as the number of autism cases increases, so does the recognition that early behavioral intervention is effective in helping many children; some advocates even claim intensive therapy can remove mild autistic symptoms all together. But this therapy does not come without problems, the biggest being cost. Autism is the fastest growing serious developmental disorder and runs the nation over $90 billion dollars a year. According to Autism Speaks, a national non-profit, this amount is expected to double in the next decade. Who will pay for the increasing demand for care?
Insurance Coverage Lacking
Currently, there is no cure for autism. However, behavioral therapy has promise as an effective, if involved, treatment. Amanda Baggs, a twenty-seven year old autistic woman, can’t speak, but she can communicate, given the tools to do so—a video camera and a computer with a synthesized voice that can articulate what’s going on inside her mind. Similarly, Carly Fleischmann, a severely autistic girl, learned to type and speak through a computer after years of intensive therapy.
Even though most clinicians and researchers agree that early, intensive therapy—such as teaching behavioral skills and positive reinforcement—make a big difference in an autistic person’s overall outcome, most private insurance companies don’t cover it. In fact, autism is usually an excluded diagnosis, even though treatments are often covered under other diagnoses.
This results in many parents having to pay for care on their own, which can sometimes involve speech, behavioral, and auditory specialists. In his paper, “The Costs of Autism,” Michael Ganz, Assistant Professor of Society, Human Development, and Health at Harvard School of Public Health, estimates that direct and indirect (such as reduced work hours) costs of caring for an autistic child can run parents between $39,000 to nearly $130,000 a year.
Laws in twenty states now require insurance companies to pay for some autism diagnosis and treatment and autism insurance bills have been recently introduced into the Florida, Connecticut, Mississippi, Arizona, and Illinois state legislatures. This policy, however, comes with significant resistance from health care companies and other advocate groups, who contend that funding for autism takes away coverage for other diseases. Others worry that providing funding for autism care, which is expensive and can last years, increases the cost of insurance for everyone.
Autism advocates hope that insurance coverage will increase the number of children getting early treatment and increase the number of skilled therapists willing to work in autism-related fields.
Medical coverage is one piece of the treatment puzzle. The other is special education, which is also hampered by lack of funds with an escalating need.
The Individuals with Disabilities Education Act (IDEA) is a federal program that ensures children receive appropriate intervention services if they have, or are at risk for, a disability. IDEA coordinates services between healthcare providers, early intervention specialists, and schools. The program is available in all fifty states and covers infants and toddlers in addition to older children.
However, according to the Government Accountability Office (GAO), the number of children diagnosed with autism and served under the IDEA has increased by more than 500 percent in the last decade, calling to question the availability and quality of services. As autistic children may need help from speech therapists, occupational therapists, and special education teachers, the cost per student is necessarily higher. The average expenditure per autism child was estimated to be around $18,000 dollars in 2000; this is two to three times the amount spent on a regular pupil. The GAO reports this is among the highest per pupil expenditure for children receiving special education services in public schools. This makes sense, considering that some behavioral treatments require forty or more hours of one-on-one time per week. With increasing cuts to public education budgets, some schools simply do not have the money to pay for these extra services.
However, as the number of autistic children increase in classrooms, and the benefits of early behavioral intervention become clearer, schools are increasing, as best they can, autism services by training teachers and hiring psychologists.
The cost of autism is likely to increase in the future. For parents, it may helpful to know your child’s educational rights, as they’re covered under the law. Second, check if your state requires insurance companies to cover autism to ensure you’re not being unfairly denied treatment. Finally, the Autism Society of America has a list of important federal funding measures that you can support.