No help in NYS: A family's battle with Autism

Posted at 4:11 AM, Feb 23, 2016
and last updated 2016-02-23 04:11:07-05

Ten-year-old James Cordone has Autism. Sometimes his behaviors are so severe, his parents spend the day just making sure he doesn't hurt himself.

They have to wear bite protectors as they hold him down, and it takes a number of adults to keep him safe.

"He can be extremely self-injurious. Putting his head through walls, windows, biting himself, biting others, extremely out of control," his mother Debbie explained.

The Cordones are sharing video of James in crisis mode because they want other families to know what they're day-to-day is like.

James goes to school at Autism Services Inc., but when his behavior got so severe, his family had to look elsewhere for help - and here's what they found.

"There is no help here. There is no help in New York State," explained Debbie.

So James, like many kids from Western New York, had to leave the state, ending up at a specialized program in Maryland. The Cordones uprooted their lives and spent eight months getting James intense treatment at Kennedy Krieger in Baltimore. It's something a lot of families can't do.

“How are they going to get the time off from their job? Family medical leave only covers so much in these situations, many times there’s other children at home.” explained Tracy Panzarella, who works at Autism Services. "If we could bring something like that to Western New York, it would be a tremendous asset.”

Right now, James is back home. His parents are implementing the behavior program created for him in Maryland. Helping them is Dr. Michael Cummings and his partner Janelle Rosati.

Crisis situations like what the Cordones faced are nothing new to the pair. They work with about 100 local families who have children with Autism.

“When behaviors are severe, they’re living in a state of crisis 24/7," explained Cummings. “We’re really just touching the top of the iceberg. The need is so overwhelming.  And the need is going to continue going up.”

The Cordones say there needs to be more help, especially help that's closer to Western New York, and not states away, so kids like James can have the most basic things they deserve.

“As long as he’s got some happiness and he smiles again," said Debbie Cordone.