Uncertainty over ACA future worries autism activists

Advocates for those with autism feel uncertain about what the future will hold if the Affordable Care Act is repealed.

Some very specific mandates related to the disorder were written into the health law.

Some believe that strong state insurance mandates will make a difference.

Habilitative care, which helps someone keep, learn or improve their skills, can be particularly relevant for kids with autism.

“An example would be therapy for a child who isn’t talking at an expected age. They’re not meeting their developmental milestones,” said Suzanne Buchanan, executive director of Autism New Jersey. “And this is in contrast to rehabilitative care, where somebody already had a skill, but lost it, due to an acquired brain injury.”

Before the Affordable Care Act, advocates said, insurers didn’t always cover this kind of care.

In New Jersey, that largely wasn’t the case because the state has had a mandate for several years that requires insurers to cover this kind of care. Many states, including Delaware and Pennsylvania, have similar mandates.

But state law applies only to plans that are regulated by state insurance department. Generally those are individual and small group plans. Most large employers use self-insurance, which is exempt from state regulatory rules.

“If the ACA is repealed, the good news is that these state mandates like the strong ones we have in New Jersey and Delaware will still be in effect,” she said. “But the potential bad news is that advocacy may be needed to prevent the dollar and age caps from coming back.”

One possible change is that a $37,000 annual cap on this kind of care would come back into play.

Some families easily can run up to that cap because some kids with autism need so many hours of therapy and treatment, Buchanan said. And that adds up.