The New York State Advocacy and Resource Center has started a statewide campaign called “It Matters To Me” to highlight concerns those with developmental disabilities have regarding looming cuts to programs and services.
This week the Clinton County Chapter of the New York ARC held a town hall meeting to discuss the issues and potential ramifications. Executive Director Theresa Garrow has been with the agency for 30 years. “In the past we’ve been able to absorb, reorganize, do whatever we could do so that changes didn’t really impact families. Unfortunately we’re at a crossroads now where the changes that are coming about within the system are not something that we can absorb.”
Cuts and a cap to respite services, access to workforce and vocational programs and low support staff wages are among the concerns that developmental disability advocates say are putting services at risk.
115th Assembly District Representative Janet Duprey has worn an Autism Speaks pin every day for over 14 years. She clarified that many problems with funding services are due to a U.S. Supreme Court decision. “The Olmstead decision said that all services for developmentally disabled adults must be integrated in everything. In work settings, in residential, in the least offensive, in the least intrusive setting available. The state has still not received directives from the federal government as to what to do. You don’t have directions from OPWDD because OPWDD doesn’t have it from the federal government.”
Many families are anxious about what services will be available.
Gerry Shadrick of Saranac has grandchildren with autism. “I have 3 grandsons with autism. Two are in a facility now out in the western part of the state. I have 3 great-nephews that also have autism. These boys are going to need a place to live at some point. They should have thought about this years ago when autism became so prevalent. But unfortunately they didn’t. We did! But they didn’t.”
Twenty-two-year-old Tony Pulsifer is severely autistic but ARC programs are helping him, according to his parents Terri and Tim, who plan to fight any cuts. “He’s made great strides over the last few years through a lot of the services that have been provided us, through the day hab services, through the respite services, the socialization. He’s non-verbal but he speaks to us in his body language. It’s just very obvious as parents to witness the growth that he’s experienced and to make cuts would be devastating. The percentages that they’re talking about would be absolutely devastating.”
Save our Services of Essex County coordinator Jane Martin doubts leaders in Albany truly understand the plight of those with developmental disabilities. “The biggest risks are that some of these disable people are going to be homeless. And if they don’t have a residence to move into and their parents die, there’s going to be no one to take care of them. That’s one of the terrifying things that the parents are going through.”
According to the New York State Advocacy and Resource Center there are more than 100,000 people with developmental disabilities statewide. The group is coordinating the ‘It Matters to Me’ campaign and has already mailed video postcards to all state legislators.
