Autism and Healthcare Access
By LIDIA WASOWICZ
UPI Senior Science Writer
SAN FRANCISCO, May 18 (UPI) — There is at least one dilemma that confronts virtually every family with an autistic child, at one point or another: the problem of access to needed services.By federal law, public schools must provide appropriate education for youngsters with autism, beginning at age 3, although programs vary by state and some families opt for private treatment, especially when the child is very young.
However, early intensive therapy is so expensive — averaging $33,000 annually, by some estimates — many districts refuse to foot the bill.
In addition, because of a lack of scientific support for certain interventions, parents often find themselves fighting health insurers to grant coverage or suing school systems to provide home-based instruction.
Some moms and dads take up the therapist’s role themselves or train college students — who come at a fraction of the cost of specialists — for the job.
“There’s very vigorous debate about which methods are optimal in a given situation for a given child, but there is virtually no debate any more about the need for intensive intervention, which means expensive intervention,” said Michael O’Hanlon, a senior fellow at The Brookings Institution, one of the oldest research centers in Washington.
“These treatments are simply unaffordable at the intensity that’s necessary to make them work.” added O’Hanlon, noting the out-of-pocket tab for his child’s therapies tallies up to some $75,000 a year.
Dr. Eileen Costello, a pediatrician on the staff of Boston University School of Medicine, said she finds third-party payers so unyieldingly reluctant to cover the bill, she sometimes has to stretch the rules to circumvent them.
“I call my friends that are developmental and behavioral pediatricians and say … ‘I want this kid to get this service. What code do you think I should use?’ And … it’s sort of sneaky, and you feel like you’re breaking the law, and we probably are,” she told an autism conference.
“But … when you’re in an office with a child, and you know he needs a certain service, you’re going to do whatever you can within reason to get that service for that child. But it shouldn’t have to be that way.”
Severe restrictions on service availability are nullifying the hard-earned gains made in physicians’ ability to diagnose the neurodevelopmental disorder early, said Barbara Firestone, president and chief executive officer of the non-profit autism service center The Help Group, based in Sherman Oaks, Calif.
“(A)ccess to intensive early intervention is still very limited in our country,” she said. “Identification without intervention is an incomplete and seriously flawed policy, very deficient.”
There are glimmers of hope, including some promising federal efforts such as the Combating Autism Act of 2006, signed by President Bush last year, which authorizes close to $1 billion over five years for autism research, screening and early detection and treatment.
The Children’s Health Act of 2000 mandated the establishment of an Interagency Autism Coordinating Committee to organize autism-related research, programs and initiatives.
An expert panel convened under the plan to focus solely on services came up with a laundry list of 50 challenges to developing and delivering care to children with autism.
“(The) five that I think are particularly important: That we don’t have professionals who are trained to deliver these interventions; that we have no consistent funding mechanism for treatment; that it varies tremendously by locality; (that there is) no established standard of care; that … we have multiple agencies that are responsible for the care of children with autism, and those agencies don’t coordinate that care very well (leading) to extraordinary variation in how care is organized, financed and delivered,” said panel member David Mandell, assistant professor of psychiatry at the University of Pennsylvania School of Medicine in Philadelphia.
“(I)t’s a new paradigm for thinking about children with these disorders and how we care for them,” he told an autism conference. “Until things change at the federal level, it’s not going to filter down to states and localities and practices so that these treatments can be delivered in a meaningful way.”
