Autism in Alabama: ‘We need insurance reform’

March 08--Paul Nichols would like to know if he should move out of state in order to receive the care he needs for a daughter who has autism.

Speaking at a public hearing before the House Insurance Committee on Wednesday, he said it is recommended that his daughter receive up to 30 to 40 hours a week of applied behavioral analysis therapy, which would cost $57,000 a year.

And with insurance companies in Alabama not required to cover the therapy prescribed for the developmental disorder, Nichols, of Talladega, asked: "Who has that income to spend? Do I move my family to another state that has insurance reform?"

Alabama is one of five states that does not require the insurance coverage, and on Wednesday, proponents of HB 284 -- the Autism Insurance Bill -- asked the state to follow suit and have a law that requires insurance companies to cover ABA therapy for autism.

Idaho, Wyoming, North Dakota and Tennessee also don't have autism insurance requirements. There was no vote on the bill on Wednesday.

"It impacts our families in the state of Alabama in two ways," said Bama Hager, program and policy director with the Autism Society of Alabama, and whose 17-year-old son has autism. "One way is that in our state, ABA therapy is not covered by insurance, so there are fewer ABA therapists in the state of Alabama. So it's hard to find a provider.

"ABA therapy runs anywhere from $90 to $120 an hour, so it can be exorbitant for families to pay for that out of pocket for years and years of therapy. It could be prescribed to have the therapy anywhere from two hours a week to 40 hours a week, depending on a child's challenges and what the family chooses to focus on. There are board certified behavioral analysts, they are the therapists that conduct behavior therapy."

Nationwide, increasing numbers of private insurance companies and other employee benefit plans are covering autism therapies. Yet many insurance companies continue to refuse coverage for applied behavior analysis, which is considered the standard of care for autism treatment, on the basis that it is "experimental" or "educational," according to Autism Speaks, which is working to change state insurance laws to require private health insurance policies to cover the diagnosis and treatment of autism spectrum disorders.

One in 68 are affected by autism in the United States, with as many as 45,000 individuals affected by autism in Alabama.

HB 284 would require health benefit plans to cover the treatment of Autism Spectrum Disorder for all insureds under certain insurance plans and contracts. It would require the department of insurance to file an annual report with the Legislature on the costs of providing treatment for Autism Spectrum Disorder.

"Autism is a growing population," said the bill's author, Rep. Jim Patterson. "We've got to find out what's causing this to increase. The base of all this is some form of insurance and some coverage for it. I think in the long run, this would save the state a ton of money ... and over time, I think this effort would give tremendous improvement in the health of our children.

"A lot of people are counting on this bill."

Currently, Nichols and his family can afford 24 hours of therapy a month for his daughter. The family can't afford the $1,000 to $1,200 week for the therapy recommended for her.

"She's not getting much therapy," he said. "We have seen some improvements. But due to the cost and not being able to get the hours that she needs, she can't get what she needs to have a productive life. My little girl is my world. Absolutely my world, and I just don't think it's fair that she can't have a chance to have a productive life because of the state we live in. It's just not right."

Nichols said all of his personal finances are used, and questions his next step.

"What am I supposed to do?" he asked the committee. "Where do I take her? Do I take the tax dollars out of this state, the state I've lived in my whole life? Or do I not take her anywhere, and she has no chance. I don't understand, and I'm asking you all for help. It kills me. It really does. It makes no sense to me why a 4-year-old, who has done nothing to anybody in this state, can't get the help that she deserves.

"We need insurance reform in this state. There's nothing else I can do."

The Autism Society of Alabama launched #AutismMatters in a social media campaign to not only bring attention to the fact Alabama is one of five states that does not provide insurance coverage, but also to get legislators to make a change.

The economic burden associated with autism is substantial, with families experiencing financial strain, said Shea Self, co-owner of Bridges Behavioral Therapy and Consulting in Florence, and who is a board certified behavioral analyst. Families pay for "around the clock" care, specialty schools and therapies not covered by insurance, special equipment if a child is non-verbal, and also individualized activities such as swim lessons.

"Alabama insurance policies are not required to cover ABA, leaving families to carry this burden," she said. "Many children who are not given access to proven therapeutic approaches like ABA, will require admittance into a state-operated mental health facility and the average cost of this is $150,000 for a child per year.

"Our children are worth the ABA therapy and the insurance coverage. They deserve the right to be given therapy that could change their life."

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