West Virginia's new law extending health care coverage to children with autism may not do what its supporters intended, and a fight is brewing with insurers over pending legislation on the subject.
The law passed last year aims to require public and private insurance to cover treatment for these neurological disorders. It also sets caps based on age: up to $30,000 annually for the first three years — children can be diagnosed as early as 18 months — and then $2,000 monthly until age 18.
Lawmakers who supported the bill and advocates for families of children with autism say the caps were meant for applied behavioral analysis. This therapy is considered crucial, particularly at an early age. Insurance has not covered ABA therapy in West Virginia, forcing parents to pay out-of-pocket or go without. The new law made West Virginia the 25th state to require autism coverage.
Before the 2011 legislation's final passage, earlier versions of the bill described the caps as maximum benefits for applied behavioral analysis. So did the review by the Public Employees Insurance Agency of the potential costs to its coverage plans.
But the final version of the bill instead refers to the maximum benefits "for treatment." The change in language has proved crucial: insurers interpret it to mean all treatment, including drugs as well as speech and other forms of therapy. That would greatly diminish the value of the benefit, as families would reach the annual or monthly cap more quickly.
Supporters argue the change is a typo. They count it among several technical flaws in the new law that legislative staff discovered months after its passage.
Rita Pauley, a lawyer for the Senate Judiciary Committee, brought these to the attention of a joint interim study committee in October.
"It was never intended that the cap would apply to all treatment these kids receive," Pauley said during the October meeting. "It was just for the applied behavioral therapy."
Supporters have rallied behind the proposed fix, drafted by that study committee and introduced last month. Limiting the cap to ABA therapy, the bill was endorsed Thursday by the House Judiciary Committee and advanced to House Finance.
"The intent of the legislation was to have meaningful autism insurance reform," Jill Scarbro-McLaury, a nationally certified ABA analyst, said Thursday. "That intent was not carried out."
Not so, say insurers. Fred Earley is president of Highmark Blue Cross-Blue Shield West Virginia, the state's largest private insurer. The cap is supposed to apply to all autism-related treatment, Earley said Thursday. Insurers agree with making technical corrections, but believe the pending bill wrongly goes beyond that, Earley said.
"We are opposed to modifying the cap mechanism portion of the legislation, which was carefully negotiated and passed last year," Earley said.
The Public Employees Insurance Agency is interpreting the new law the same way, Director Ted Cheatham said Thursday. So are the state-run Children's Health Insurance Program and the insurance commissioner's office, Cheatham said.
"We believe from our attorney that the law that was ultimately passed does indeed state that the cap is for all autism services," Cheatham said.
Cheatham said his agency is not taking a position on the pending bill. But, he believes a new fiscal analysis may be necessary for legislators to review.
"Clearly, there will be a bigger financial impact to the plan," Cheatham said. "(Lawmakers) just need to look at it."
Supporters are also crying foul over Highmark's decision to limit autism-related coverage to treatment provided by an ABA analyst who is also a registered psychologist. There is only one such professional in West Virginia, House Judiciary Vice Chairman Mike Hunt told fellow delegates during a Thursday floor speech.
The father of a child with autism, the Kanawha County Democrat has been a leading advocate of insurance coverage throughout the more than five years that the Legislature has debated the issue. He warned that given the 2011 law's current status, "These children are burning. We're fiddling."
"There's not a single child that's received a single benefit," Hunt said. "It's too late for my son. There are other people's sons that we can still help. There are other people's sons that can still make a difference (with)."
Earley said Highmark is in full compliance with the 2011 law.
The coverage requirement applies to group policies issued or renewed as of Jan. 1. As the plan year for the Public Employees Insurance Agency, begins July 1, its coverage will start then. The new law exempts plans for employers with no more than 25 workers.
The autism spectrum covers an array of neurological disorders marked by problems with communication, behavior and social skills. It is considered one of the most common developmental disabilities in the U.S. The National Institute of Mental Health says it's more prevalent among children than diabetes, spina bifida, or Down syndrome.
The range of conditions includes a severe form called autistic disorder and the much milder Asperger's syndrome. Supporters say early diagnosis and intervention through such evidence-based therapies as ABA can make critical differences.
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