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PEF responds to Times Union story about high-needs patients not getting proper care

The Albany Times Union published a story on Sept. 12 with the headline: “State seeks to move severely autistic clients to secure facility.” We wish we could say that was news to us, but it is not. PEF represents thousands of nurses, social workers, and other clinical and treatment professionals at the Office for People With Developmental Disabilities (OPWDD). We have been sounding the alarm for more than a decade about the misguided facility closures and service cuts that have caused the current crisis.

The consequences of our failure to provide adequate care and support for people with the greatest needs are apparent in today’s headlines and newscasts. Some individuals are exploited, some end up in hospital emergency rooms and others end up in jail. The upticks in homelessness and violence taking place everywhere from the New York City subways to the streets of Rochester are happening in part because people have serious treatment needs that are not being met. 

When Gov. Cuomo took office in 2011, he immediately began closing facilities and shifting the burden of care for people with intellectual and developmental disabilities (I/DD) from state agencies like OPWDD to private providers in an effort to cut costs.  We are now seeing the results of this so-called “transformation agenda.” In 2012 there were 2,107 state-operated residential programs with more than 12,000 clients. In 2019 – the last year for which we have data because the state is far from transparent with these statistics — those numbers were 1,593 programs and 8,863 clients. That calculates to more than 3,000 individuals with the most serious treatment needs who do not have residential placements available to them.

And yet the need for such care has not diminished.  PEF learned via a Freedom of Information Law request in Feb. 2021 that OPWDD received 11,770 requests for residential care placement in 2012 and six year later, in 2018, that number was down to just 10,936 requests. Families are seeking care hundreds of miles from home for their loved ones because the state doesn’t have enough beds to care for its own citizens. This is shameful. We have abandoned the most vulnerable New Yorkers in their time of greatest need.

In 2013, the state began closing in-patient intermediate care facilities statewide that reduced by more than 1,300 the beds available to New Yorkers with the most serious treatment needs. There are now just two facilities statewide – in Binghamton and Tupper Lake – able to provide residential care for I/DD patients. Families are forced to either drive hundreds of miles to seek care for their loved ones or send them out of state, with no guarantee the costs will be covered. New York used to be the envy of the nation for its public health safety net.

But this is a crisis of our own making and one we can solve if we all work together. It is our hope that Gov. Hochul and the NYS Legislature will seize this opportunity to reinvest in OPWDD. We need to immediately restore services that were previously provided to individuals with the greatest needs. New Yorkers deserve to receive care in their communities from specialists who can treat and support them.