Parents “mad as hell” over proposed developmentally disabled cuts

This year, hundreds came out to the Brooklyn Developmental Disabilities Council Legislative Luncheon at Gargiulo’s Restaurant on Friday, March 1 to voice their concerns and mobilize to fight the proposed cuts to the Office for People with Developmental Disabilities (OPWDD).

According to Governor Andrew Cuomo’s proposed budget, there are $240 million ($120 million from the state plus a matching $120 million from the federal government) in cuts for OPWDD services, specifically non-profits like the Guild for Exceptional Children (GEC) and Life’s WORC. These cuts are related to cuts in federal funding that comes from the Centers for Medicare and Medicaid Services (CMS) which would slash $1.1 billion from total Medicaid funding sent to the state, which includes funding for OPWDD as well as other state agencies.

“We have had years of cuts and increased costs…auditors breathing down our necks…New York Times’ articles that criticize but never celebrate the civil rights movement we brought about,” said Paul Cassone, president of the BDDC and executive director of the GEC. “This makes me mad as hell. Does anyone else feel this way or is it just me?”

Ed Matthews, chief executive officer of United Cerebral Palsy, noted that when the disgraced Willowbrook State School was shut down along with 19 other institutions, 50,000 people with disabilities “entered the community.

“The original intent of New York State was to move into home care,” he said. “Now we are being criticized for doing for 50,000 people what no one else ever did.”

Parents and those living with developmental disabilities spoke about how the cuts would affect them.

“Anyone that has a special needs child knows the incredible gift and calling it is as a parent to care for these children. From birth to adulthood, we are their voices,” said Arlene Rutuelo, a Bay Ridge community activist whose daughter, Danielle, has special needs. “As a parent, I ask you today not to confuse the fiscal issues. Please fight with us for our funding, please measure each entitlement and potential cuts to the person that is cared for and served.”

Rutuelo gave elected officials, including Assemblymember Peter Abbate, Assemblymember Nicole Malliotakis, State Senator Marty Golden and Justin Brannan, chief of staff for Councilmember Vincent Gentile, who attended the luncheon, a calendar made by residents at the Guild.

“Our children really do need you, as never before,” she concluded.

Jerry Smith, who lives in a UCP residence, asked, “What will a budget cut mean for me?”

Courtney Burke, commissioner of OPWDD, answered, “less services. But my hope is that we avoid it altogether.”

Christopher Greif is vice chair of the BDDC and is developmentally disabled. He said that the cuts will “affect the services” he needs “to survive.

“Even though everyone says, ‘Oh don’t worry, Chris can do so much,’ I cannot do everything. I still need help. I need support,” he said. “My mom wants me to be safe, living in a safe place with enough healthy food to eat, medical care, friends, recreation and a well-trained staff that is paid well who will help me to live.”

Dawn Michelle Sorgen uses the YAI Day Habilitation Program, which gives her “an opportunity to learn work skills, socialization and safety,” according to her father. When she is not there, she works with Greif to advocate for the needs of the developmentally disabled.

Sorgen said that the cuts are “confusing. I’m upset and I’m annoyed about it.”

Ernest and Essie Walker both have disabilities but live in an Individual Residential Alternative.

We maintain a fantastic quality of life together. At home, Essie and I are very involved in our community,” he said, adding that they were both residents of Willowbrook. “If these cuts occur, the backbone of our life would be destroyed. I fear that I could remain in bed with only custodial care and, in essence, return to the lives that my wife and I led when we lived in large institutions.

“I do not want to go backwards,” Walker went on. “That is a life that no one should ever live again. We can and should do better in New York State.”

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