With the passage of Act 62 in July 2008, Pennsylvania appeared primed to become a leader in the treatment of autism, offering parents of autistic children up to $36,000 in annual health insurance benefits.
Autism is a spectrum of neural developmental disorders that impair communication and social behavior. Act 62 promised generous support for families drowning in bills. Ask some parents of autistic children if the mandate's working, and their rage is palpable. They'll show you stacks of unreimbursed bills, and describe thwarted e-mails and calls seeking help from insurance companies and state agencies still determining regulations on an act that went into effect four months ago. "This law was passed to give us options, to avoid bankruptcy getting there," says Karen Misher, the mother of 2-year-old autistic twins. Her monthly bills for her sons are $3,200. So far, she hasn't received a cent in reimbursement from Independence Blue Cross.
This week, Gov. Rendell released the Pennsylvania Autism Census, which projects the number of Pennsylvanians living with autism will increase from 20,000 in 2005 to 25,000 next year, due, in part, to the improvement in diagnostic tools. The report identifies Philadelphia, Montgomery, and Allegheny Counties - the state's most populous - as having the most residents with autism.
Early diagnosis, at 2 years of age or earlier, and aggressive and intensive therapy are critical to developmental progress. "The learning needs to happen 50 weeks a year. These kids, without treatment, have really severe patterns of regression," says Kelly Johnson Donohue, who holds a doctorate in clinical developmental psychology and who has been assisting autistic children since 1993.
Children with autism don't have one therapist, they have a team - beginning with applied behavioral analysts. They don't pattern behavior after adults. They need to be taught to imitate, then communicate. They require speech and occupational therapists.
Misher, an artist and Arcadia University professor, has therapists in her home every day, 16 hours of therapy per week per child. The city provides some assistance, but it's not enough. "If we were to lose city services, or insurance doesn't find a provider solution, the cost could reach as high as $85,000 a year for the two boys," Misher says. That is more than her salary.
Independence Blue Cross, the region's largest insurance provider, has only nine approved agencies offering autism services in Philadelphia, a city of 1.4 million. "If they have experience, they should be able to contract with us," said Richard Snyder, senior vice president of health services at Blue Cross. Snyder said those nine agencies represent 700 providers. One is a school, another is the name of one individual, a third lists only a number, not a name. It seems unlikely the list comprises 700 professionals.
As for behavior specialists, so critical for early intervention, Blue Cross approved only two providers in all of Montgomery and Philadelphia Counties. Snyder conceded that Act 62 "is a very complicated mandate that cuts across very different health issues." He called the legislation "a work in progress," so new that behavior specialists "were completely out of our provider network."
Anna Baumgaertel, a Narberth developmental behavioral pediatrician who worked for a long time at Children's Hospital of Philadelphia, won't take insurance for her work with autistic children. "We don't get reimbursed for the quality of work that we do. Insurance companies are at liberty to determine reimbursement. And it's an insult to these professions."
Donohue has transitioned 33 children to "a best-outcome status," where they no longer fit the criteria for autism and can attend mainstream schools. She's a team leader for other specialists. Donahue meets all the criteria to be an Act 62 behavior specialist. But that's not enough for the Pennsylvania Department of Insurance, which has imposed a license requirement.
"It would take me a year of additional training," says Donahue, who has a doctorate and 16 years of experience. Her work for parents like Misher, who pays $1,600 month, isn't covered by insurance. Among those whose help is covered, many receive little reimbursement. The state is working on behavioral-specialist regulations, but they won't be determined until July 2012.
Legislatures frequently pass mandates ordering insurance companies to cover screening, like mammography, or treatment for illnesses such as diabetes. "Act 62 is very different," said Cindy Fillman, of the state Department of Insurance, who held informational meetings across the state with parents. "This is a function of how different treating autism is from a lot of other illnesses."
During the last 20 months, one Montgomery County father has paid $77,000 out of pocket while making hundreds of calls trying to line up insurance coverage. He asked not to be named. He doesn't want his 3-year-old son stigmatized, he said, a frequent concern of parents. "I think the bill was passed with the best of intentions," he said. "But this is unacceptable. The Pennsylvania Department of Insurance and Blue Cross don't seem to want to pay anyone."
Everything related to autism and Act 62 appears to come with difficulties. "Here you have a complicated statute with a complicated illness and a complicated health-care system," said Robert Field, professor of health management and policy at Drexel University. And the potential payout is large.
"Insurance companies tend to hate mandates," he said. "Most mandates have an organized segment of the health-care professionals moving the work along, like radiologists with mammograms. Here, you don't have a single speciality with political clout."
Caring for an autistic child, getting the attention needed, is a challenge, and costly. Act 62 was passed to alleviate that financial burden. So far, there's been no relief for parents like Karen Misher.
"A year from now, I don't want to look back and say, 'I wish I had done more for my sons.' We've already seen improvement," she said. Alexander makes eye contact. Nathaniel picks up words. "This seems like a law that has no teeth."
Instead of improving Misher's life, and that of her boys, Act 62 - and the promise of all that insurance coverage - has only increased her burdens. Now, day in and day out, instead of spending valuable time with her sons, she must negotiate the shoals of government and insurance bureaucracy.