The clock is ticking on how much support they can expect from anyone else.
For James, turning 21 means he is a year away from “Turning 22,’’ or Chapter 688, the state law that governs what happens when people with disabilities turn 22. From ages 3 to 22, children with special needs receive special education funding from their local city or town. If they are in day or residential schools, there is cost-sharing between the state and local municipality.
At 22, the local school system no longer has any responsibility, no matter how severe the disability. Most children who receive special education move on with their lives as adults and receive no further services. About 5 to 8 percent have impairments and support needs which require assistance as adults. Many of those students are assigned to the Department of Developmental Services.
Referrals to that agency have been going up each year - from 450 in 1984, the year the “Turning 22’’ law was enacted, to more than 700 today. The increase is linked anecdotally to the rise in children with autism, as well as to children who survive infancy with complex medical conditions.
For a while, the state budget allocation for “Turning 22’’ went up, too. It reached $8.5 million in the 2007 fiscal year. In recent years, however, it has been level-funded at $5 million, forcing families to lobby - make that beg - for supplemental budget increases. The line item in the budget Governor Deval Patrick just released for the next fiscal year is $5 million.
The program provides access to employment training, in-home support, and social networking. Allocations are not keeping up with need, said Leo Sarkissian, executive director of The Arc of Massachusetts.
“This is a doorway to the supports they need and the life their parents hope for them,’’ said Sarkissian, whose group is pushing for at least $10 million in “Turning 22’’ funding.
