In Your Corner: Waiting For An Autism Waiver

By Ryan Elijah

February 17, 2012 Updated Feb 17, 2012 at 8:03 AM EST

Matthew Gibson is a 22-year-old with Severe Autism. He also has obsessive compulsive behavior and has shown signs of Tourette Syndrome. Everything seemed normal with him until he was suddenly diagnosed at two years old. Since then he's not been able to speak and needs 24-hour care.

" the older he gets the more frustrated he is that he can't talk, he's smarter than people realize, he's just trapped in his own body",said Matthew's Mother, Annie Gibson.

The Gibson's have tried countless treatment programs, this summer he started showing nearly 300 behavior problems per month. That's when his parents tried Bethesda Lutheran Home, a Fort Wayne Christian organization that treats adults with disabilities. It's made a drastic difference for Matthew with just a few behavioral issues now.

Currently, he receives a support service waiver that pays for 7.5 hours per week at Bethesda and his parents pay for some additional time. For them to receive 40 hours the family would need a Development Disability or Autism Waiver. The Gibson's applied for one in 2000 and have been waiting ever since.

"we never guessed in a million years we'd wait that long", said Annie.

It turns out, Matthew has plenty of company, numbers provided to INC by the Family and Social Services Administration show over 19,000 people on a waiver waiting list, but that's down slightly from last year.

The state agency cited privacy issues in discussing Matthew's specific case, but told us demand far exceeds available funding. They also said 85 percent of the wait list is receiving some services and through the Division of Disability and Rehabilitative Services (DDRS) they're serving more Hoosiers needing waiver services than at any time in the division's history.

One of the biggest frustrations for families can be the lack of an update on where they stand in the "waiver service line", but the FSSA told us they plan to roll out an online tool at the end of the month to help families determine their status.

The morning we met Matthew, he was going to Bethesda and I was told not to mention that because he gets too excited.
His family says the 1-on-1 interaction has made a world of difference and a local neurologist wrote a letter saying it's best to keep him busy. Autism cases like Matthew's can take an immense toll on parents, but the Gibson's want him at home as opposed to a group home setting, like so many, they're hoping their prayer to the state for help is answered.

"I just pray it goes through and I truly appreciate you trying to help with this". said Annie.

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