Thousands of families across New York State were prepared to receive a new insurance benefit for their autistic children, at the beginning of November. But a last-minute mandate added onto New York's new autism law, has prevented that from happening. Families, and their therapists, are frustrated.
It had been a long time coming when New York's Autism Insurance Mandate was signed into law last November.
"This is just – would be absolutely huge for families to be able to tap into this and utilize the insurance coverage," said Lisa Ferri, parent of autistic children.
Now a year later, families like Lisa's, are ready to receive $45,000 of fully-insured autism therapy.
"That is quite a bit money. Too much to wrap my head around!"
But because of a last-minute amendment to the law, passed on Halloween:
"The state is now requiring that you also are a licensed professional," said Denise Rhine, Center for Autism & Related Disorders.
And many certified therapists, are not properly licensed.
"It's very frustrating, because we've had so many families, so excited to start additional services outside of school, or outside what they're already getting for funding," said Rhine.
It's the latest setback for autism advocates, whereas otherwise, progress has mostly made leaps and bounds forward.
"Definitely a lot has changed. There's more resources out there, there's more information out there," Ferri said.
"Education across-the-board about disabilities has been much better, than it has been in the past. Still a big way to go..." said Rhine.
And the gap may be growing. According to the national non-profit "Autism Speaks," now 1 in every 88 children is diagnosed with some form of autism - the fastest-growing developmental disability in the U.S.
But policies catering to autistic individuals, especially in schools, are lagging behind. A recent study found hundreds of autistic children have been injured in the past decade, because they were physical restrained as a disciplinary method. Some even died.
It's why therapists say their service needs to be made more available -- not restricted by the state.
"Most schools do what they can within the school setting. But in any school setting, to be able to get the level of therapy that's discussed in research -- that can't happen," Rhine said.
Times are changing for autism. Now advocates say, the state needs to catch up.