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Thursday, February 10, 2022

Deinstitutionalization, Insurance, and Prevalance

In The Politics of Autism, I discuss evaluationdiagnosis, and the uncertainty of prevalence estimates.

Rachel Burr Gerrard at STAT:
As the deinstitutionalization movement took off, many children who would have been diagnosed with mental retardation were instead diagnosed with autism, not because the diagnosis was more accurate but because its treatment was preferable. As autism diagnoses increased, diagnoses of mental retardation and other learning disabilities decreased. More diagnoses and more patient advocacy led to more money dedicated to autism therapy and research, which in turn led to even more diagnoses. This trend has continued today as the number of psychiatric beds continues to decrease and parent advocacy groups successfully lobby to raise billions for autism research.

Another powerful factor behind the rise in autism rates is the passing of insurance mandates. Since 2001, all 50 states have instituted mandates requiring non-self-funded private insurance plans to cover behavioral therapies for autism. These mandates can save families up to $50,000 a year on treatment. The prevalence of autism increased an average of 10% directly following a state’s mandate implementation and 18% after a mandate had been place for a few years.

Insurance mandates increase autism rates because, in borderline cases, practitioners and parents push for a diagnosis that ensures a child receives coverage for the help the child and family need. The families of children with developmental disorders other than autism must often rely on broad laws such as the Individuals with Disabilities Education Act (IDEA), which vaguely states that each child must receive a “free and appropriate public education in the least restrictive environment.” IDEA’s implementation is underfunded by Congress and largely depends on each state’s interpretation of it. With such limited options for children with special needs, it makes sense that caring practitioners might push for a diagnosis that guarantees children receive the help they need.