By Scott Brinton
Giangregorio's 8-year-old son Nicholas has autism, a brain development disorder characterized by repetitive behavior and an inability to communicate. Despite intensive therapy as a child, Nicholas is "non-verbal," meaning he cannot speak.
His father held a news conference with a host of lawmakers to call on the state Legislature and Gov. David Paterson to pass a measure that would require insurance carriers to cover the cost of treatment for the one in roughly 155 state residents now diagnosed with autism.
Giangregorio emotionally spoke of the hundreds, even thousands, of parents who must burn through their 401K savings or take second mortgages on their homes in order to afford supplemental treatments for their autistic children beyond those offered in the public schools. Autism, he noted, is not covered as a medical condition by private insurers. Giangregorio and his wife, Alison, have spent more than $85,000 on treatments for Nicholas.
"In the case of a child with autism," he said, "doing without care or diluting care could mean the loss of critical opportunities."
State Sen. Charles Fuschillo Jr., a Republican from Merrick, organized the news conference with Assemblymen David McDonough and Thomas McKevitt, both Republicans, Assemblyman Harvey Weisenberg, a Democrat, and Sen. Craig Johnson, a Democrat.
"Many parents who have children with autism face a choice that no parent should ever have to make: face financial ruin or stop getting treatments for their child," Fuschillo said. "Requiring insurance coverage for medically prescribed treatments and care for children with autism will ensure that parents can get their children the health care they need without having to lose everything they own in order to do it."
Two bills -- one in the Senate, sponsored by Fuschillo, and the other in the Assembly, sponsored by Weisenberg -- would require insurance companies to cover autism treatments. Each house must pass its own version of the measure before a unified bill can be agreed on. Then Paterson must sign off on it. Fuschillo said he hopes to pass the legislation into law by June.
Weisenberg, a 20-year veteran of the Legislature who has a special-needs child who has not spoken in 50 years, said he expects a tough fight to get the measure approved. The insurance industry, he predicted, will converge on Albany to defeat the bills.
"Nothing is easy ... We're going to have a terribly tough time in the Assembly," Weisenberg said from the capitol. "You have [the insurance] industry working against you. We need the public's support." He called on people to write to their state lawmakers in support of the effort to get autism covered.
"Let them know how important this bill is," Weisenberg said. "This is something that has to be."
Treatments that would be covered under the proposed law include medications, speech therapy, occupational therapy, physical therapy, applied behavioral analysis, counseling, and psychiatric and psychological care.
"Right now, parents who have children with autism must pay tens of thousands of dollars out of their owns pockets just to get medical treatment for their child," McDonough said. "We need this legislation to make sure that these families can get the care they need without having to put their financial future at stake."
Fuschillo said he first became interested in the autism issue more than a decade ago, when he was executive director of the Education and Assistance Corporation, a nonprofit human service agency. A colleague, Robyn Schneider, had twin boys with autism. Schneider eventually left the EAC to help found the Genesis School in Plainview, in part because she could not find a Long Island school using applied behavioral analysis, or ABA, as an autism treatment. ABA, she believes, is the best treatment method, defining problematic behaviors through direct observation and outlining a step-by-step plan for changing those behaviors.
Schneider's sons, Alex and Jamie, are now 18, and she is weighing group home options for them when they get a little older. Nicholas Giangregorio, meanwhile, is now a student at the Genesis School.
Early intervention, Schneider said, is critical in helping autistic children grow into productive adults. With time, patience and one-on-one attention, they can learn to speak, and even hold simple jobs. There are students at Genesis, she said, who work at T.J. Maxx and Home Depot stocking shelves, for example.
"Every moment is really a learning opportunity" for children with autism," Schneider said. "The simplest thing -- tying your shoe -- has to be taught."
She said New York must begin to address the autism crisis, or it will eventually overwhelm the state. "There is a tidal wave coming," she said. When her children were young, the autism rate was estimated at 1 in 10,000, she said. Now it's down to 1 in 155, in part because diagnosis has improved, but also because more and more babies are born with autism. No one is sure why.
Schneider said she wonders what will happen in the future when group homes are overrun with autistic adults. What, she said, will the state do then?
McDonough said that autism was underreported in the media and misunderstood by the public until recent years. "It's taken a long time for people to understand what autism is," he said.
Comments about this story? SBrinton@liherald.com or (516) 569-4000 ext. 203.
