New state insurance law seeks to bridge affordability gap for families

Terri Pitre has renewed hope that her 9-year-old son, Ethan, will get the therapy he needs for a chance at a more normal life. Ethan was diagnosed with autism at 2 1/2.

Gov. Bobby Jindal signed into law last week a measure that would mandate insurance coverage of therapy and medication for autism for children through age 17. The new law requires that children with autism receive up to $36,000 in insurance benefits per year, with a lifetime maximum benefit of $144,000.

Although children with autism benefit most from multiple modes of therapy begun in early childhood, Ethan has been receiving only physical therapy and speech therapy. It's all the family can afford. Their insurance company covers a portion of the physical therapy expenses, but has a yearly cap of $900 on speech therapy - only enough for a few months each year. His parents cover the rest themselves.

"Our insurance company and a lot of insurance companies consider that when you have a child diagnosed with autism, they want to categorize it into the mental-health category. Most don't pay mental health very well," Pitre said.

Pitre and other members of the Autism Society of Acadiana had met with state Sen. Donald Cravins Jr., D-Opelousas, earlier this year to make him aware of the plight of Louisiana families that include children with autism.

With state Rep. Franklin Foil, R-Baton Rouge, he subsequently co-authored the bill that would offer some relief to those families. It easily cleared both houses and was placed on Jindal's desk June 17. It goes into effect Jan. 1, 2009.

"I don't think there was a 'no' vote in the Legislature," Cravins said.

Advocates for the insurance mandate told Cravins of applied behavior analysis, better known as ABA, a comprehensive approach to therapy for autistic children, which, ideally, involves training everyone who cares for the child, including parents, teachers and therapists. It is most effective if it's implemented as soon as a child is diagnosed, usually around age 2.

ABA has proven effective in most cases, although there is no cure for the condition.

"There's no treatment that's going to be 100 percent effective," said Vickie Nettles, past president of the Autism Society. "What we want to give is the best opportunity to make progress to whatever degree is possible."

Nettles has incorporated some elements of ABA into the life of her 15-year-old daughter, Catherine. It would have been better if she had had access to a trained ABA therapist, she said. Although she can write, Catherine still doesn't speak beyond one or two-word utterances.

"If we could have afforded something like ABA, she'd be further along than she is, now," Nettles said.

The problem was that ABA is prohibitively expensive for most families and not covered by most insurers in the state.

The situation spoke to Cravins on a deep level.

"As a parent, thinking there might be something out there that could help my children, but I couldn't afford it or the insurance didn't cover it, how frustrating that must be," he said.

Support for the bill was not hard to garner among legislators, Cravins said.

"This is one that crossed all racial and socio-economic lines," he said, adding that the only strong opposition the bill faced came from the Louisiana Association of Business and Industry.

Nettles said she believes LABI opposed the bill because it would force their members to pay for additional health-care premiums.

"We have no comment," LABI spokesperson Brigette Nieland said. "We did oppose the bill, as we oppose most health-care insurance mandates."

The Louisiana Association Health Plans, which represents the insurance industry in the state, had some concerns, but was able to negotiate compromises with the bill's authors.

"We thought it was manageable and it could provide additional benefits to those children and give employers some comfort that the additional premium dollars would be spent effectively," said Gil Dupré, the organization's CEO.

"What Franklin (Foil) and I tried to do was to minimize their opposition," Cravins said. "It would apply only to businesses with 50 or more employees. It's one of the compromises we made, so small businesses wouldn't be hurt by this mandate.

"We were trying to make sure this bill passed."

Other compromises included lowering the proposed age limit from 21 to 17, although Dupré said his group favored an even lower limit, and placing the yearly and lifetime maximums on benefits.

"That could provide benefits at a fairly early age and do it for four solid years," Dupré said.

Another concession to the insurance industry was to require certification of ABA providers through the Behavior Analysis Certification Board, he said.

There are only about 10 ABA therapists in the state, unlike neighboring Texas, which has considerably more, Nettles said, but she hopes that the new law that requires insurance companies to cover their services will attract more of them to Louisiana.

Increased numbers of therapists could result in fewer people who need an elaborate support system later in life.

"Eventually, the parents are not going to be there," Nettles said. "Individuals with autism whose parents are not there will need more government services - group homes, independent living options or supportive employment.

"We want our loved ones with autism to be as independent and functional as possible and not to be reliant on the government."