Despite Law, Thousands With Autism May Still Be Without Important Behavioral Therapy

Familes hoping to obtain behavioral intervention for loved ones with autism need to check with their insurance as well as the state agencies, called regional centers, that provide assistance to people with developmental disabilities.

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California’s historic move to require insurance companies to cover behavioral interventions for autism could still leave thousands with limited access to the expensive therapy.

Monday, July 2: NBC4 Hosts Experts to Answer Your Questions About Behaviorally Based Treatment for Autism

More: Mandated Coverage for Behavioral Interventions for Autism Begins Sunday

Starting this month, most plans will have to cover the intervention, called applied behavioral analysis and widely believed to be one of the most effective treatments for the autism and other developmental disorders. 

The therapy involves working intensely with a child or adult to break down even the most simple of social and vocational tasks into tiny steps that can be learned by most people.
But even though the goal was to make the intervention available to most Californians through their insurance, many plans will not offer it. That’s because most of the largest employers are exempt from state requirements under a 1970s-era law that was actually meant to protect privately funded pension plans.
The law says that any company that is self-insured – meaning that they pay for the care that their employees through a fund they’ve set up to handle those expenses – are subject to federal regulation, but exempt from many regulations imposed by the states.
Most large employers fall into this category, which means that covering behavioral therapy for autism will be voluntary for them.
Some large companies have decided to comply with the law anyway, said Tammy Pederson, director of insurance for Trumpet Behavioral Health. But many have not.
“There’s starting to be huge pressure on companies to cover this,” Pederson said. “But it’s absolutely voluntary. They do it because the families need it.”
Until now, families have either had to rely on public assistance to pay for the services, or shoulder the cost themselves. Because a behaviorist will work with a child for 25 hours per week or more, the treatment can cost thousands of dollars per month.
To find out if your insurance will cover the therapy, don't just speak to customer service, Pederson suggested. Instead, call and ask for the autism unit. Workers there will be more likely to know if the plan will cover behavioral interventions in compliance with the new law.
If you have difficulty dealing with your health plan, or continue to have questions, you can contact the California Department of Managed Health care, which has an autism advisory task force.
Many families whose insurance will not cover the therapy will be able to receive it through a series of state agencies known as regional centers. These are the same agencies that have been covering it for some children through the public sector.
A list of regional centers statewide can be found by clicking this link, and parents can ask that their loved ones with autism be evaluated for behavioral interventions. The therapy is also available to people with some other developmental disabilities.
But not all people with autistic-like tendencies can get for services from the regional centers, which are overstretched financially and have in recent years been forced to cut back.
Others may find that they do have insurance coverage for the therapy, but that the co-payments put it out of reach anyway.
Pederson, who is working with NBC4 to staff a call-in line for viewers trying to find out more about behavioral therapy and the new law, said it’s important for families facing expensive deductibles and co-payments to go back to their local regional centers to see if they can get financial assistance.
The regional centers, meanwhile, have been told by state lawmakers that it would be illegal for them to fund behavioral services for people who are covered under their insurance.
So thousands of families received notifications in June that they will be dropped from the state-funded program unless they can show that they are not covered.
Even more confusing, each regional center is responsible for implementing its own version of the law, so there is no clear answer to questions about whether there will be help with co-payments, or whether services will be interrupted as children transition from state-provided benefits to private ones.
Phil Bonnet, executive director of the Alta Regional Center in the Sacramento area said it’s important for families to work with their local regional centers to make sure that services for their loved ones are not interrupted or imperiled as the state struggles to figure out who will be covered by private insurance and who will need assistance.
Bonnet said he does not expect families to be unceremoniously thrown out of the system in July simply because the law has changed. Rather, he said, state officials will work with families to ensure a smooth transition.
“We’re not the police, and we’re not great bill collectors,” Bonnet said. “We’re just a bunch of social workers trying to help the kids and the families.”

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