STATEN ISLAND, N.Y. — They are among our borough’s most vulnerable.
But efforts to put a strategy in place to house and care for those with developmental disabilities is — at best — in a frustrating holding pattern, with critics pointing at a glaring lack of urgency.
Advocates go so far as to say that Gov. Andrew Cuomo’s failure to provide support for the intellectually and developmentally disabled (I/DD) community is a violation of their civil rights.
Lack of state funding is preventing new services and programs from opening, and causing existing ones to stretch resources extremely thin, prohibiting them from expanding to meet the needs of the ever-growing I/DD community.
“The bubble is going to burst,” said the parent of a 21-year-old son with autism.
The “bubble” that she is referring to is the significant jump in the number of people who were diagnosed with intellectual and developmental disabilities in the late 1990s and, since that time, that bubble keeps on growing.
“We knew that this was going to happen; this was foreseen. It’s been going on for years and we’ve been warning [people] about this for years. More and more children are being diagnosed with [I/DD] but the services — and the funding — are not growing with the community,” she said.
This mother is very familiar with all sides of a critical issue that gets very little exposure: She’s the parent of a child with severe autism and has lived it, but also knows the depth of the policy crisis as a trained social worker.
Because the crisis is so widespread and largely ignored, she asked that her name not be used out of fear her son will lose services they waited to so long to get, in fear of retaliation for speaking out.
“My son was on a wait list for eight years!” she said about the crucial educational program for her son, adding that even her professional “connections” in the field could not help her fast-track the services her son so desperately needed.
“I know people that are still waiting. These places don’t have enough funding,” she said.
PUTTING PRESSURE ON ALBANY
She does not place blame on the borough’s elected officials, who she says have recognized the problems and done what they can — with what little they have — for the community on Staten Island.
The vast policy and funding initiatives that are needed remain in limbo because of a lack of urgency or action in Albany and a languishing study Cuomo promised.
Over several months, efforts to get the governor or the key agency responsible for these services to comment have been met with silence.
Rallies have been popping up across New York state — and across Staten Island – advocating for additional housing, funding, early intervention services and a united call for action by the community as a whole.
The Staten Island Developmental Disabilities Council (SIDDC), in an effort to draw attention to the crises, staged protests across Staten Island, visiting the offices of elected officials, pleading with them to hear their concerns and asking them to put pressure on the governor.
WE INVITED THEM IN
The SIDDC’s Islandwide effort included a stop at the Staten Island Advance.
The advocates asked that the Advance take an in-depth look at their concerns and aid them in their efforts for better services, more funding and an increased awareness of community.
“The families need to keep doing what they’re doing and make noise. Let the governor and the administration know how the lack of action in Albany is affecting them,” said Assemblywoman Nicole Malliotakis (R-Staten Island/Brooklyn).
“[Gov. Cuomo] does respond to public pressure and it’s so important that families keep writing to him and local legislators and let him know that you’re not going to forget come election day. I think that’s something that’s important to communicate,” Malliotakis said.
Malliotakis recently joined the Assembly Minority Task Force on Protecting the Rights of People with Developmental Disabilities, along with Assemblyman Ron Castorina (R-South Shore), and heard the testimonies of families from across the borough.
After holding forums across the state, the task force plans to put together a report with suggestions to aid lawmakers develop real solutions to better serve and support people with I/DD.
“It’s a real issue and that’s exactly why we did this. The idea behind this report is to push it and try to get the attention of the governor,” Malliotakis said.
She said the report will have a number of suggestions to help shape legislation, and though they all won’t get adopted, typically “three or four of the big ones” will.
WHERE WILL THEY LIVE?
Family members, advocates and providers say the governor’s failure to address issues, some of which can be life-threatening, is a direct violation of the Americans with Disabilities Act.
A lawsuit filed in in the Western District of New York against Gov. Cuomo states that the “insufficient availability of appropriate adult residential settings violated the Americans with Disabilities Act and the Rehabilitation Act.”
Kerry Delaney, acting commissioner of the Office for People with Developmental Disabilities (OPWDD), also is named in the federal class action lawsuit.
The lawsuit is referring to the nearly 11,000 individuals in the state of New York who are currently on OPWDD’s residential request list (RRL).
The RRL has been even larger, at around 14,000 individuals, but some were lucky enough to be placed over the last few years.
Although the lawsuit was filed in Buffalo, the lack of residential options for individuals with I/DD stretches through New York state and trickles all the way down to Staten Island.
Of those 11,000, nearly 2,000 people are considered in emergency need of placement and some of them live on Staten Island.
The nearly 9,000 individuals who are not considered of emergent need make up the remainder of the RRL — many of whom also live on Staten Island.
JUST ONE EXAMPLE
One Staten Island family is taking care of their daughter with I/DD. But the daughter is 53-years-old and is being taken care of by parents who are 82 and 79.
Their daughter has been on the residential request list for years.
This past summer, the daughter broke her hip and required surgery and rehab in order to recover. Due to her increased needs, the parents’ age and lack of progress finding a secure residence, her parents made the difficult decision of placing her in a local rehabilitation center.
Over half of the individuals on the RRL are not unlike this family and have caregivers who are 60 or older.
LEGAL LEGACY OF WILLOWBROOK
The infamous Willowbrook State School shut its doors for the last time in September 1987, 13 years after it was renamed the Staten Island Developmental Center.
The repulsive and inhumane conditions discovered at the facility resulted in sweeping legal rulings regarding the treatment of the develomentally disabled across the nation as mandated by the courts and the Willowbook Consent Decree.
One such ruling — the “Olmstead Decison” issued in 1999 by United States Supreme Court — was based on the Americans with Disabilities Act and states that individuals with I/DD have the right to receive state-funded supports and services in the community, as opposed to in institutionalized settings.
The ruling came after a Georgia resident Lois Curtis — and later Elaine Wilson — brought legal action against Tommy Olmstead, who was commissioner of the Georgia Department of Resources at the time.
The lawsuit alleged that the state did not help Lois and Elaine, who both had intellectual and developmental disabilities, receive treatment and support in the community, forcing them to go in and out of mental health hospitals in the state even though their physicians said they were able to live in the community – with proper resources.
“[If] the state’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities,” the High Court stated.
The Supreme Court went on to say that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that person isolated are incapable or unworthy of participating in community life. Historically, confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment.”
FEAR OF GOING BACKWARD
Families are terrified that lack of services, community integration and funding to keep up with the Olmstead decision and other Willowbrook-related rulings will force a return to the time when institutionalized services were the norm and places like the Willowbrook State School were used to “warehouse” the disabled.
It may have been called a school, but Willowbrook was anything but.
Vulnerable adults and children were starved, mistreated, sexually abused and left in rooms or cages for hours, if not days, on end without any attention.
Advance reporter Jane Kurtin began uncovering the questionable practices of Willowbrook in the 1960s, but it wasn’t until ABC-News’ Geraldo Rivera’s expose Willowbrook: The Last Disgrace that Willowbrook and the institutionalization of individuals with I/DD was placed in the national spotlight.
In the years that followed, that glaring light and relentlentless coverage by the Advance and other media led to legal and policy reforms that transformed how those with developmental disabilities are cared for. And a return to such inhumane treatment cannot, and will not, happen.
But with the population at an all time high, and still growing, the question is: How will the state maintain those reforms and provide those in need with the services, housing and care they not only require — by law — but deserve as members of our community?