NEW 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.

 “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