MY FRIEND James Nadworny is turning 21 the classic way, with warm wishes, birthday cake, and a party bus.
Because he has Down syndrome, his passage to adulthood comes with special challenges.
“We can’t believe it has been 21 years,’’ said his mother, Susan. “Every parent must say that as their baby becomes a full-fledged adult - but with James we have had the most incredible journey. He has shown us the very best and the very worst in people. He has opened our hearts and minds to endless possibilities, but the future is scary. We want so much for him to have a full life with friends, a life that brings him joy and an ability to be a contributor to our community through real work and volunteering. Our vision for James’s future is not so different from other parents, just a lot harder to put together.’’
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.
There’s less money today for everything government tries to do, and many believe government should do even less. If that view prevails, it redefines society’s priorities; it also narrows the possibilities for fellow citizens like James. His need for fulfillment is like anyone else’s. It just unfolds in different ways.
I’ve watched him ride a boogie board into large waves, clamber up a lifeguard tower, and then unhappily realize what it takes to get down. The two of us once took a long and winding water slide ride that plopped him underwater, sputtering for air. Reenacting the drama for his parents, he put his hands around his neck and made choking sounds. They still trust me, even if James doesn’t. If we’re on the beach and my daughter is in the ocean, he calls out her name to make sure someone is watching out for her.
Over the years, I’ve watched him grow, learn, and mature. Today, he loves bowling, listening to music, drinking Coke, and fooling around with his iPad. Sometimes he’s frustrated by an inability to communicate and resistant to do what others want him to do. But does that make him so very different from young adults we consider “typical?’’
To live a life in full, he needs a full commitment from the rest of us. Money is part of it. That’s reality.
My birthday wish for him is a happy and productive life and a world willing to pay more than lip service to help him live it.Joan Vennochi can be reached at email@example.com. Follow her on Twitter@Joan_Vennochi.