Budget Cuts, Nonprofits, and Developmental Disabilities

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Sliding Back toward Willowbrook?

Several months ago the Cuomo administration announced that budgets for nonprofit agencies serving the developmentally disabled would be cut.
This had led to an outcry from parents, community members, and those who work at these agencies. Recently it was announced that the cuts would be changed.

Although this is helpful, it still leaves most organizations with expenses that would not be covered by incoming monies. And the loss will be substantial.

Crys McCuin, Director of Dutchess ARC, has written a compelling analysis of the situation and reasons explaining both the unfairness of these cuts and the problems they will cause for consumers and families:

“That overspending he [Governor Cuomo] references has built a community-based system of service for individuals with developmental disabilities that is unmatched in the United States. It is often referred to as a ‘Cadillac’ model suggesting we should be ashamed that New York has directed substantial resources in the past 30 years to a group of people who were routinely hidden away, and discarded from our communities. Having been in the system for 40 years, witnessing how individuals were treated years ago, I am not ashamed!

“I know intimately how we have grown and developed. While not always agreeing with the process, like most other nonprofits, I followed the guidance (and, yes, directives) of the Office for People With Developmental Disabilities (OPWDD) in converting service systems to federal Medicaid reimbursement. It has been no secret that the intent was to draw down federal Medicaid to save the state money, and allow for development of community services. Voluntary providers followed OPWDD rules and created a system of community-based support based on those rules and requirement. At that point, we all (New York state included) accepted a moral obligation and responsibility to ensure this system of service demonstrated a level of care which had been sinfully lacking in New York state’s history of service.

“Did it get too big? Is it too expensive? Perhaps so, but today the reality is the reality. Buildings for homes and day programs are mortgaged based on costs and renovations demanded by the state of New York. Thousands of individuals are receiving 24-hour care in most of those homes because it is what they require to be safe, healthy and valued. Many have no family or have aging relatives who are physically or emotionally unable to care for their family member. Ensuring these Medicaid-funded services are ethically provided and billed for requires monitoring, program oversight, responsible finance and compliance staff, and ethical administration. This is the moral obligation that Cuomo inherited when he became governor. It belongs to him. The state cannot shirk this responsibility when so many lives are at stake—and they are at stake! He cannot destroy a system without hurting people who now depend upon it.

“Centers for Medicare & Medicaid Services (CMS) has been involved in determining rates and billing protocols for the last 25 years and from my perspective is equally culpable for this suggested ‘overpayment’; which prompted the payback demand from the federal government. The articles in the Poughkeepsie Journal two years (M. B. Pfeiffer) noted a day rate might have embarrassed some government departments but it was not news. Everyone knew it, and approved it. I share this so you will understand that I, along with the majority of providers in New York state, know and understand the back story that isn’t being discussed publicly. This wasn’t a covert operation; governors knew it, the Department of Health knew it, and CMS knew it. Everyone knew how this money was being utilized.

“Now, because CMS has been chastised by the United States House Committee on Oversight and Government, they are demanding the alleged overpayment back from New York…and the governor’s plan? Take it from the voluntary providers, an action that will decimate critical services to individuals with developmental disabilities in the voluntary sector. My heart tells me that he cannot possibly intend this, but my head suggests that as an intelligent and astute individual Gov. Cuomo understands exactly what he is doing.”

It was forty years ago that Geraldo Rivera produced the landmark-news documentary, Willowbrook: The Last Disgrace. The images of dirt, neglect,
and suffering—within the institutions that were created to offer a safe harbor for the state’s most vulnerable citizens—created a huge outcry that prompted Governor Rockefeller to add planned spending cuts back into the budget.

Rivera included a newsreel of Robert Kennedy, from 1967, calling Willowbrook “a snake pit.” On the show, a farmer was quoted, saying, “I’m a farmer. I take care of my sheep and cattle better than the state takes care of it’s retarded citizens.”

In 1982 ABC News and Rivera produced a follow-up program, “Willowbrook: 10 Years Later.” Whereas this depicted improvements, particularly more personalized care as well as the establishment of smaller group homes in communities, serious problems remained.

One can only hope we are not seeing a regression, a back-sliding of services, which would hurt the most vulnerable citizens. Help AMHF build a more humane society. For coming times, this foundation has more specific plans to help the developmentally disabled, with all the specific emotional traumas faced by social stigmatizing and misunderstanding.

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