Monday, March 19, 2007

Autism Updates

There is a good deal of new news on the autism spectrum front. There is info on childhood autism, as well as some medical professionals developing some insight on autism, based upon new technology such as YouTube.

New York State is also on the ball-- in response to pressure from parents and advocates. The New York State Office of Mental Health held hearings on Autism Spectrum disorders last week. The room was so packed, the stories and testimonies so vivid, that the hearings have been extended. In addition, a proposal, Johnathan's Law, was presented. This is a bill (for access to care information) is based upon the tragedy of a young man with autism who was killed by personal 'care' attendants. ( I have attached the story below.)

Here are other hyperlinks:

Jonathan Carey's parents testify at Senate hearing
Updated: 3/6/2007 7:17 AMBy: Ryan Peterson, Capital News 9

Michael Carey said, "We're talking corruption, serious corruption. Webelieve someone had political connections somewhere. This is disgusting,and it's got to stop."Jonathan Carey was severely autistic and could not speak. But the 13-year-old's voice was heard loud and clear as his parents, Michael and Lisa, testified before the Senate Committee on Mental Health and Developmental Disabilities. Lisa Carey said, "Our battle for changes to the current mental healthcare system began long ago. In 2004, our son Jonathan, then 11 years old, was abused and neglected at the Anderson School in Dutchess County.The family is proposing "Jonathan's Law," which calls for stifferpenalties for those who endanger the welfare of the disabled and willprovide parents and guardians access to all records pertaining to their children. At the Anderson School, the Careys discovered their son living in deplorable conditions and learned of a drastic change in his care program -- both of which, the family said, they would have known about with better access to Jonathan's records.

Lisa Carey said, "The withholding of records from families allows state agencies to conceal the evidence of abuse, neglect and broken laws,which have been established to protect our most vulnerable population.This must be stopped immediately."Senator Thomas Libous of Binghamton said, "Right now we've learned that this state does a miserable job with children with autism and has to do a better job."Jonathan died while in the care of two aides at a different center --O.D. Heck Developmental Center in Schenectady County. Police said thatan illegal restraint was used on Jonathan by a state aide. Even worse, according to police, was that the aides didn't realize something waswrong until 90 minutes later, when it was too late.

Governor Spitzer's nominee for commissioner of the Office of Mental Retardation and Developmental Disabilities said things will change underher watch. Acting Commissioner Diana Jones Ritter said, "I cannot defend theactions that occurred prior to me. But I can assure you that mydirection to my staff will be to listen carefully and respond adequately. I'll give you the commitment that our doors will be open and we will look for ways to provide information to parents."Legislators said Jonathan's Law is a priority and they hope to have adraft ready for a vote within the next two weeks. The Assembly meets to discuss the state's handling of autistic children on Thursday.


mcewen said...

I'm glad his parents are there to speak for him.
A small point - I think that the 'secrecy' issue stems in some instances from the fact that some parents have to relinquish custody of their children to become guardians of the State in order to qualify for services - no idea what percentage that might be. I appreciate that the 'terminology' here, differs from country to country and State to State, but the underlying principle is the same.
Best wishes

Future Doc Wilson said...

Thanks for the perspective.