Approximately 1.2 million children in the United States younger than 21 are affected to some degree by the autism spectrum disorder (ASD), or autism, according to the US Centers for Disease Control and Prevention. That’s roughly one out of every 68 children and the diagnosis rate rises every year.

The best treatment plans start as early as possible and involve medical specialists in various disciplines. Enactment of the Affordable Care Act (ACA), leaves coverage of autism and many other medical issues up to state exchanges to establish the details of coverage if any. This state-based mandate has created gaps that have spurred many parents of autistic children into pushing for coverage that is expanded and streamlined across state borders.

So far, Washington, D.C. and 37 states have passed laws that require some degree of coverage for autism in their individual state exchanges. Coverage isn’t the same in all 37 states plus D.C. and two of those states — Minnesota and Virginia — leave coverage up to private and self-insured plans rather than the state exchange.

Applied behavioral analysis (ABA) is considered by many to be the most effective way to guide autistic children through the behavioral and communication issues characterized by the disorder. Treatment can cost tens of thousands of dollars per year and ABA works best when started in earliest childhood.

Insurance providers are reluctant to offer ABA, saying it will require them to raise premiums for all customers. The ACA itself is another reason insurance providers must raise premiums, according to Susan Pisano, speaking on behalf of the trade association, America’s Health Insurance Plans. Pisano says state mandates simply make coverage more expensive.

It’s the states’ reluctance to include coverage for ASD and the implied certainty of increased premiums that have parents pushing back, according to Judith Ursitti, director of state government relations for the ASD advocacy group, Autism Speaks. “The exchanges are in place and things are starting to percolate with the ACA, so now we’re able to go back and pick up some momentum.”

Some of that momentum includes:

  • New or expanded law or coverage regulations in Kansas, Maine, Maryland, Nebraska, and Utah.
  • Agreement to study the issue in Hawaii, Mississippi, and South Dakota.
  • Consideration of further exploration of ASD coverage in North Carolina.

Under current law in Maine, coverage must be provided until a child reaches age 5. Critics of the law claim it’s discriminatory against poor children of color, as affluent white children are more likely than others to be diagnosed by age 5. The state’s legislative body is debating raising coverage to age 10 but ASD advocates are pushing for increasing the age limit to 21. Many autistic patients struggle with symptoms well into adulthood.

The rate of autism diagnoses has risen by 30% since 2012 and the numbers are expected to climb in coming years. One reason often cited for the growing diagnosis rate is better diagnostic tools as the disorder becomes better understood.

Source: Durkin, Alanna. “Autism families push for better, uniform coverage.” NewsDaily. ScienceDaily, LLC. May 25, 2014. Web. Jun 2, 2014.