At the end of March last year, I ordered 110 Autism Awareness magnets to signify the 1 in 110 children in America who were said to have autism.
April 2 is World Autism Awareness Day, and as mom to a 17-year-old with the pandemic developmental disorder, I planned to do my part. I'd cover my Honda CR-V with magnets, and in my cross-county trip to work in Commack, thousands of motorists and pedestrians would learn a little about autism.
But as the magnets headed for my home, the Centers for Disease Control announced I wouldn't need all 110. The package arrived at the same time as a newspaper reporting the incidence had grown to 1 in 88.
It was damp when the sun rose that April 2. Blowing warm air into my hand, I read the directions on a bottle of window marker: "Shake vigorously. Press tip onto surface." On my car's rear window, I wrote: "April 2nd is World Autism Day. 88 ribbons for the 1 in 88 children w autism in the U.S." My message was finally legible after I repeated it several times.
I lost count of the honks I heard that morning. My glance was often met with a motorist's smile and thumbs up. At a red light on Commack Road, a scruffy man in a construction vehicle leaned out his window, waved and yelled, "Way to go!"
As the mother to a minimally verbal son, I'm quite literate in body language, and I noticed some voyeurs who thought me crazy. But those are the lucky ones who don't have a daughter, grandson, niece or neighbor with an autism spectrum disorder. Yet. My son was 1 in 10,000 children when he was diagnosed 16 Aprils ago. A recent government survey pegged the incidence of the developmental monster at 1 in 50 schoolchildren.
These children are a growing tsunami heading for the state's Office for People with Developmental Disabilities. Today, their care and treatment are largely paid for and overseen by the state Education Department. But when they "graduate" at age 21, the responsibility shifts to the developmental disabilities office.
Yet the 2013-14 state budget passed last week includes a 4.5 percent reduction in annual funding to all Office for People With Developmental Disabilities agencies: $180 million. Gov. Andrew M. Cuomo had proposed a 6 percent cut. He and Senate and Assembly leaders ignored tens of thousands of affected individuals, families and support staff who rallied and advocated against any reduction.
This 4.5 percent cut follows three years of decreases, during which our representatives in Albany slashed 9 percent from the office's budget, reducing the number of available day programs and placing a near-moratorium on group- home development.
As the Assembly passed the budget, a historic debate took place in its chamber. Assembs. Harvey Weisenberg (D-Long Beach) and Michael Montesano (R-Glen Head), and dozens more, spoke passionately about the devastating impact of these cuts.
Where will these children live and work when they become adults? The state's plan is to support Mom and Dad so their adult children can continue living at home. But Mom and Dad often cannot find staff to come to their home. And these children will long outlive their parents.
The director of one Office for People With Developmental Disabilities agency on Long Island was quoted in a 2011 New York Times story as saying, "Several years ago we would open four to five homes a year. Now we are down to one or two, with none planned beyond next year." Another said that for the first time in 32 years, "there is no money for new homes."
Advocates and parents fear a return to Willowbrook, the ominous Staten Island institution closed by our governor's father in 1987. Perhaps its halls and holding pens will forever remain empty, but without adequate planning and funding for the state disabilities office, there will be a crisis just as atrocious as Willowbrook.
As Mary Fasano, co-chair of the Long Island Family Support Services Advisory Council, said at the council's 2009 legislative breakfast, "No one set out to make Willowbrook the hell hole that it came to be. It was created over time by the slow erosion of funds necessary to care for people with disabilities."
History is repeating itself with another erosion of funds that's picking up momentum. Like the window marker on that chilly April morning, our policy-makers must be shaken vigorously and pressed until the urgency of this message becomes legible.