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Pa. bill mandates insurance for autism
By Angela Couloumbis
Inquirer Harrisburg Bureau
Jul 24, 2008
HARRISBURG - The signs came early and were, in retrospect, unmistakable.
As early as 9 months old, little Caroline Borgia would spend hours staring at a beam of sunlight, and the way it captured dust motes. Caroline would also wiggle her arms, sometimes contort her face in odd ways that made other people notice.
For Karin Fox, Caroline's mother, the shock of learning her daughter had autism only worsened when she realized health insurance wouldn't cover extensive, and expensive, treatments for the disorder. "It was like a full-time job," Fox, of Narberth, said of figuring out how to pay for Caroline's therapies, "but one that you were never, ever done with."
Fox's story could be told by almost any parent of an autistic child, in any city, in any state across the country.
But a bill just signed into law by Gov. Rendell could soon change that storyline.
Starting next July, the bill will require private insurers to cover diagnosis and treatment of autism spectrum disorders, up to $36,000 annually, for those under 21. That includes coverage for applied behavioral analysis therapy - or treatment focusing on teaching social, verbal and other skills to help shape behavior - which advocates say is essential to treating the disorder.
For treatments above the $36,000 cap, families, regardless of income, can still turn to the state's Medicaid program to fill in the gap. Health plans covering businesses with fewer than 50 employees are exempt from the bill.
Rendell and others who championed the issue believe Pennsylvania's autism-insurance law is among the strongest in the country.
They may be right, many autism advocates say.
Cutting edge With autism diagnoses on the rise nationally - it is estimated that 1 out of every 150 children are diagnosed with the disorder - many states are pushing private insurers to begin shouldering some of the costs of treatment.
But only eight, including Pennsylvania, have enacted laws mandating varying degrees of insurance coverage for diagnosis and treatment, according to Autism Speaks, a national organization dedicated to increasing awareness of the disorder. New Jersey is not among the eight.
"There is definitely a move nationally to usher this type of legislation through," said Nina Wall-Cote, director of the state Department of Public Welfare's bureau of Autism Services. "And Pennsylvania is now on the cutting edge of that."
Still, California's experience with a similar law may serve as a warning to such optimism. That state passed a mental-health parity law in 2000 that required insurers to cover autism and other behavioral disorders. But insurers and families have clashed over what treatments are deemed medically necessary - and require coverage - rather than experimental. Lawsuits have ensued.
In Pennsylvania, supporters maintain the law was written specifically to try to avoid such fights. The state's law spells out specific treatments to be covered, making it harder for insurance companies to argue otherwise.
Philosophical concern But that doesn't address another, more philosophical concern: Why require coverage for autism and not other diseases?
"Because that is the particular patient-advocacy group that has the governor's ear at the moment," said Mark Pauly, a health economist at the Wharton School at the University of Pennsylvania. "The worry, however, is that using that as a mechanism to determine what appropriate coverage should be doesn't seem like the most scientific or systematic or fairest way to make those kinds of determinations."
Michael Piecuch, chief of staff to House Speaker Dennis M. O'Brien, the law's main sponsor and cheerleader, said, "We have to start somewhere . . . and this population has been categorically denied insurance coverage."
Autism is a disorder that inhibits a person's ability to communicate (both verbally and nonverbally) and develop social relationships. Depending on where children are diagnosed on the autism spectrum, the symptoms can range from mild to very severe - although advocates say intervention is necessary on both ends of the spectrum.
There is no cure.
Treatments can cost up to $80,000 a year, and can bankrupt families whose insurance plans either don't cover them or offer limited coverage, advocates say.
Pennsylvania, though, has long drawn notice for its financial support for families with autistic children. Even before the new law, families could, regardless of income, apply for assistance through the state's Medicaid program, run by the Public Welfare Department. The department spends roughly $185 million annually on medical-assistance programs for autistic children under 21.
But a statewide task force assembled by Public Welfare Secretary Estelle Richman in 2003 recommended, among other things, that private insurers begin treating autism as the significant illness it is - and offer comprehensive coverage for children with it.
Because the new law will shift many autistic children off Medicaid and into private insurance plans, the state could save $13 million the first year it goes into effect.
But Pennsylvania's law, Rendell and others said, is not just about cost-shifting.
O'Brien, whose nephew is autistic and who has championed autism causes throughout his legislative career, believes it is about "a social responsibility" to children with the disorder.
One of the reasons he became speaker, O'Brien said, was so that autistic children - he calls them "my kids" - would "go from 3-by-5 cards to 8-by-10 glossies" and would have "a seat at the table."
"I personally was ecstatic," Stacey Groder, whose 10-year-old son, Jared, has autism, said of the bill's passage.
Like Fox, Groder, of Yardley, said she knew early on that something was not right with Jared. At around 16 months, he went from walking and talking on time to forgetting his verbal skills.
After Jared was diagnosed with autism, Groder said, her insurance offered limited coverage for treatments, such as speech therapy. So she and her husband began paying for some of them out of pocket.
"I was tired of fighting with the insurance company," she said.
Today, Groder said, there are people who meet her son and do not realize he has autism. She credits years of therapy for that.
But she knows Jared still faces many challenges. And the new law means she can continue, and even step up, treatments.
That alone, she said, is a comforting thought.
Fox said the idea that she would soon be able to simply present her insurance card to pay for Caroline's therapy was liberating.
Since Caroline was diagnosed with autism just shy of her fourth birthday, Fox said, "life has been devoted to fighting about how to get this coverage and that coverage."
"It's hard. And it's scary. And in the end, it just takes time away I can have with my magnificent and brilliant little girl."
Contact staff writer Angela Couloumbis at 717-787-5934 or acouloumbis@phillynews.com .
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