Over 500 people came to the Brooklyn Developmental Disabilities Councils annual legislative brunch on March 9 at Gargiulos Restaurant to discuss how Governor Andrew Cuomos 2012 budget will affect the disabled.
Parents of children with disabilities, voluntary provider agencies, state and government workers and elected officials, including Councilmember Vincent Gentile and Assemblymember Peter Abbate, were in attendance at the legendary Coney Island restaurant.
Although there are no significant cuts for the first time since 2008, changes in the budget will affect the Early Intervention (EI) program, which serves developmentally disabled children from birth to three years old. The program offers both therapeutic and support services for children and their families, including special instruction, vision therapy, nursing and social work services.
If these cuts go through, this will probably be the end of EI, said Helen Reyes of the Guild for Exceptional Children (GEC).
Fred Assenz has a four-and-a-half-year-old daughter, Mercedes, with Down Syndrome who attends pre-school at the GEC. He said that he has received Early Intervention services in his home and the cuts are cost-ineffective. This program is amazing and has helped tremendously, he explained.
Barry Resnick and his son Jeffrey of the Dreamstreet Players Group gave a special presentation. Resnick dreamed of his son living in a fully supervised home with his peers, but it was too expensive.
Since Resnick knew he would never spend money on Jeffreys college education or a car, he and other parents pooled together that money to buy a home that has two fully serviced apartments, housing three people each.
These people will live in this house for the rest of their lives, Resnick said. All are delighted with the result. They are free to pursue lifes goals.
Barbara Cuthel talked about the services her son Matthew receives. Matthew is 25, has autism and epilepsy and needs 24-hour supervised services.
We have to make choices between discretionary spending and necessities, Cuthel said. Developmental disabilities are not illnesses that can be cured; they are lifelong conditions.
Cuthel said that Matthew attended public high school so it was easy for him to integrate, but now she does not know what to do. Its the nightmare of every parent with a child with disabilities who will take care of them? she said. A vacancy at a home doesnt mean anything. People have special needs. I want to make it clear that a one-size home does not fit all.
Paul Cassone, chair of the Brooklyn Developmental Disabilities Council and the executive director of the Guild, echoed the harsh reality. A lot of parents say, I hope my child dies before I do because I wonder what will happen to them, he said.
Amy Fried, who has a 27-year-old son, David, with autism, praised the services she receives. He is in a day habilitation program at HeartShare and attends a recreation program at On Your Mark Agency. The family would not be in the balanced place we are now without the support we receive, she explained, adding that with this assistance, she and her husband can work full-time jobs, shop, do chores and go on dates.
David even goes away to camp for two weeks every summer. My husband and I can stop and smell the roses, Fried said.
Ed Matthews, chief executive of United Cerebral Palsy, discussed the need to take action when it comes to finances. Its not about today, but about tomorrow. There is no money to serve the next generation of people who need something, he said. We can sit back and wait for cuts every year or we can be proactive.
Matthews said that agencies have to find ways to make funds work more efficiently. Its hard but its not impossible, he said. We have to trust each other.