NYC Parents Express Outrage at Gov. Cuomo for Cutting Funding for Homes and Services for Disabled

idd town hall III.jpgNEW YORK, N.Y. – Over 100 parents of developmentally disabled children attended a public hearing with New York State Sen. Bill Perkins and State Assembly Member Robert Rodriguez last week to express their outrage with Gov. Andrew Cuomo for drastically cutting funding to build residential homes and provide critical services for their special needs children.

“I am 58, almost 59 and I have never ever seen in my life the disabled community as disrespected as this government is doing right now,” Tony Philip, who is developmentally disabled himself, told the gathering. “Why can’t he (the governor) do what his father did?, he asked, referring to late Gov. Mario Cuomo.”

Perkins, Rodriguez (both Democrats from Harlem) and parents resolved to take action to pressure the governor to reverse his damaging decision to cease building new residential homes for adults with disabilities, to ensure there is more money in the state budget to provide critical services and to pay workers caring for the disabled living wages to compensate them fairly for what is often extremely challenging work and to reduce extremely high turnover rates among staff.

Idd town hall II.jpg “Parents are aging, and there are those who still have their children at home,” said Elly Rufer, co-founder of NYC FAIR: Family Advocacy Information Resource which sponsored the public hearing #Keeping the Promise. “The New York State legislature must understand that for them the idea of residential placement is now a mirage; it is virtually non-existent…At present the only avenue to residential placement is a crisis. We moms, dads and siblings are worried and very frightened. We fear for their lives. We are that worried about the future of our children.”

Marilyn Jaffe-Ruiz, whose late brother had lived at home with their widowed mother until two weeks before she died of breast cancer, implored the state legislators to do whatever was necessary to increase funding to build residential homes.

“I am here to not just ask, or even politely demand, but to BEG you to increase and enhance funding for the development of residential homes for those with intellectual and other developmental disabilities. Without these safe, secure, loving homes you are rupturing families, leaving them in despair, depriving them of home and a sense of security that their loved ones will be safely cared for when the family is no longer able to. I am asking you to make funding for residential services including facilities for those who are aging and frail, and salary and appropriate levels for staff, the very highest priority as you make budget decisions. We cannot and will not go back to the days of Willowbrook with mass institutionalization and inferior care.”

Parents expressed exasperation over the infuriating bureaucracy involved in the government’s new self-directed care program in which funding is provided for parents or high functioning adults with disabilities to pay for their own services including rent or mortgage payments rather than providing residential placement and other services directly from nonprofit agencies funded by the government.  Parents also expressed outrage that the funding allotted for rent or mortgage payments are way below what is needed to live in New York City.

“Self-direction for our family seemed to be the answer to what we need for our son – we did not want a traditional day program and residential placement – well we know that is just not available now,” said Jackie Ceonzo. “From the minute we started the process it became apparent all was not what it seemed. (My son) Joe’s budget was cut by $20,000 from the initial assessment to the day of the launch – literally from one month to the next as all budgets were just cut across the board … So I ask you would you trust this program as the alternative it has been touted? … Parents are angry. Things have been promised and not delivered all throughout the system.”

Parents complained that countless letters and phone calls to the governor’s office seeking a change in policy went unanswered. The governor’s office could not immediately be reached for comment.

The parents signed a petition Perkins and Rodriguez were planning to present to Gov. Cuomo along with their testimonies. “Everyone in this room tonight has signed this petition asking that you join them in their commitment to ensuring that OPWDD (Office for People with Developmental Disabilities) works toward housing everyone who has a need, providing intense care for those who depend on it, empowers families who care for their loves ones at home, fully funds our not-for-profit agencies who oversee their care, and gives a substantial raise, professionalization and career opportunities to our dedicated direct support professionals,” Perkins said, reading from the petition.

After leading the group in chanting, “Fight for Your Rights,” Perkins told the parents he and Rodriguez were going to make sure whatever petitions they had would be delivered to Gov. Cuomo or Mayor Bill de Blasio and the leaders of the legislature and the New York City Council.

“We’re in a desperation situation … We want to make sure that we do our due diligence in informing our colleagues of the concerns that have been brought to our attention,” Perkins said. “We … have a responsibility to inform them of the efforts that you have so diligently and effectively made to communicate what is happening that should be fixed and that should be improved for the sake of this particular community,” said Perkins.

To view the full hearing click here







carlucciNew York Sen. David Carlucci said Thursday he remains committed to restoring $120 million in budget cuts to nonprofit providers who provide vital services for New Yorkers with developmental disabilities as state legislators continue negotiations with Gov. Andrew Cuomo on his proposed cutback to the Office for People with Developmental Disabilities (OPWDD) despite reaching a tentative budget agreement last night.

“While various components of this budget agreement continue to be ironed out, I continue to remain focused on fully restoring funding to nonprofit providers who service those with developmental disabilities,” Sen. Carlucci said in a statement.  “A $120 million dollar cut to the OPWDD budget is too steep a price to pay, and as Chairman of the Senate Mental Health and Developmental Disabilities Committee I will do everything possible to avoid these devastating cuts.”

Both the Senate and Assembly recently passed budgets restoring the $120 million cut proposed by Gov. Cuomo, which when factoring in matching federal funds, actually constitute a $240 million reduction in services that the developmentally disabled depend upon for their safety, health and well-being. The nonprofit agencies facing a potential six percent cut in their budgets offer medical and clinical services, help developmentally disabled individuals find employment and live independently, and also provide support to families caring for disabled loved ones.



New York Gov. Andrew Cuomo and the New York State Legislature reached a $135 billion tentative budget deal Wednesday night but still left many issues unresolved including whether to implement Gov. Cuomo’s proposed $120 million cut to services for the developmentally disabled.

The office of Sen. David Carlucci, chairman of the Senate Mental Health and Developmental Disabilities Committee, confirmed that no decision had been reached on whether to reverse or reduce the proposed cuts, which could jeopardize the safety, health and well-being of one of New York’s most vulnerable populations.

The NY State Senate and Assembly both passed budgets that restored the proposed $120 million in cuts to the budget of the Office for People with Developmental Disabilities. With matching federal funds at stake, the proposed $120 million reduction actually amounts to a $240 million cutback.

Nearly 15,000 people signed an online petition launched by Sen. Carlucci calling for the full restoration of cuts to OPWDD. A final decision on how much funding will be cut from OPWDD’s budget is now expected by Sunday. Gov. Cuomo reportedly indicated on Wednesday that the cut to OPWDD is likely to be less than the $120 million he proposed.

There is still time to tell Gov. Cuomo and your New York State Senators and Assembly Members to immediately STOP THE CUTS to services for the developmentally disabled!!!



NEW YORK, March 15 – Shouting “Hell No, Cuomo,” and “Governor, Have Some Guts, Restore the Cuts,” several hundred people with developmental disabilities, their family members and the workers who care for them protested outside of Gov. Cuomo’s Manhattan office Friday against his proposed $120 million cut in funding to the nonprofit agencies that provide critical services to one of the state’s most vulnerable populations.

“I think we have to ask why is New York State launching an attack on people with disabilities, State Assembly Member Thomas Abinanti of Westchester County told the protesters. “The budget for the new New York reduces special ed, it blocks access to insurance provisions designed to help people with autism and it diminishes help for people with disabilities all to pay for income tax cuts for the comfortable, tax breaks for business and big subsidies for corporations. It’s not fair, it’s not right and it’s not New York.” State Assembly Member David Weprin also spoke at the rally.


Gov. Cuomo has proposed cutting $120 million or six percent of the state budget allocated to nonprofit organizations that serve people with developmental disabilities. Because state Medicaid dollars are matched by the federal government, New York State’s $120 million cut would mean a total loss of $240 million in the coming fiscal year.

The Democratic majority in the State Assembly and the coalition that controls the State Senate have proposed restoring the full amount of money that the governor is seeking to cut in their own budgets that have already been passed. Organizers of the rally said a final decision on the proposed cuts is expected some time next week. The New York State budget for fiscal 2013-2014 must be passed by the Legislature by April 1.

Caretakers of children and adults with developmental disabilities and employees of the nonprofits that provide the funding to the caretakers expressed serious concern about losing their jobs. “The six percent cut is going to devastate our services, put people at risk and cost jobs, probably even mine” said Tracy Behling, who works for the Young Adult Institute (YAI) as a regional supervisor in Westchester, overseeing the staff and residents of 14 group homes. Medicaidrally3

Gov. Cuomo did not issue a direct response to Friday’s protest but when asked about the proposed cuts at a press conference on Thursday, he said, “We believe the reduction is manageable…the way we want to manage this reduction, which division of budget will do, is we want the reduction to be borne by the administration overhead and executive salaries rather than the cost of the direct care and direct supervision because many of these overheads, I’m telling you can be reduced. Many of the salaries are exorbitant, the corporate expenses are exorbitant and that’s where the reduction should be borne.”

But the nonprofit agencies that provide the services refuted the governor’s allegations, insisting that the $120 million cut would have a devastating impact on all sorts of programs and services that they provide to people with developmental disabilities in New York State. “It’s a disgrace to take away services for our most vulnerable population,” said Donna Long, executive director of the Grace Foundation of New York and the mother of a grown child with autism.

The six percent cut was triggered by a change in how the federal government plans to reimburse New York State for the care of people with developmental disabilities. Washington has alleged that New York has overbilled Medicaid for the institutional care of people with disabilities for over a decade, charging about $4,500 per person per day for people with developmental disabilities in institutional care while much of that care was deinstitutionalized, and much of this federal funding was redirected to other services for the developmentally disabled.

Still, the end result of the six percent cut to the budget of the Office for People with Developmental Disabilities (OPWDD), which provides the funding to the nonprofit agencies that pay the salaries of direct care workers for the developmentally disabled and also offer their clients a vast array of other services including recreational and work programs, is expected to jeopardize the safety, health and well-being of this extremely vulnerable population, protest organizers said.

Tell Gov. Cuomo and your New York State Senators and Assembly Members to immediately STOP THE CUTS to services for the developmentally disabled!!!