Not every train travels on the same track

A recent perspectives piece by Edward R. Matthews that was published by New York Nonprofit Media on Aug. 3, was remarkably disappointing, especially from someone who had worked for the Willowbrook Review Panel.* As the vice chairman of that panel, I had hoped that Ed learned the lessons from Willowbrook, but those lessons do not appear to be apparent in his article.

In Ed’s article he accepts Gov. Andrew Cuomo’s representation that his Medicaid Redesign Team was intended to simply “bring costs more in line” and to enroll each recipient into “managed care plans for all their Medicaid services.” Many years ago the institutional system was eliminated and a new system of small community residential homes and services were forced by the Willowbrook Class Action (1972), the Willowbrook Consent Judgment (1975) and its Willowbrook Review Panel (1975). The prior dual system of funding – which contained (and caused competition between) separate streams for severely and mildly developmentally disabled individuals – was also eliminated. Everyone, including severely and profoundly multiply developmentally disabled handicapped individuals, finally sat at the same table with those who were mildly and moderately developmentally disabled. They were no longer competitors but brothers on the same team. The work performed by the Willowbrook Consent Judgment and its Review Panel was effective. Residents experienced tranquility, higher levels of service and financial benefits for almost 40 years, even after the termination of the Willowbrook Review Panel in 1980, when the state refused to fund its operations.

While the state of New York insists upon taking credit for the miraculous turnaround in the field of the developmentally disabled, it must be noted that New York state opposed and resisted the progress and work of the class action and the review panel, even though it voluntarily participated in the drafting and signing of the consent judgment. Frankly, the state has earned the mistrust it receives from any clear-thinking, fair-minded parent, family member, advocate, litigator or person in the field of developmental disabilities.

It is true that costs have risen greatly, but the state seems to be attacking the hard-fought system of small community residential home services and seeks to move us backwards to the horrific system of institutionalization in “back wards.” Fewer and fewer services are being made available to those who are more severely disabled and therefore appear to have less potential to grow. The nurturing of life seems to lack any importance and the essence and intent of the Olmstead case – which was a Supreme Court decision that worked to provide higher-quality services in smaller residential units – is being twisted and perverted.

Ed’s mentor’s belief that when the train is coming down the track, don’t get in front of it, get on it, sounds cute but is only meant for those who want to be safe. In the old days, we stopped the train, got on the engine and changed the route. Was it risky? Of course it was. Was it worth it? Can anyone believe that it was not? It was well worth it. Following the hijacking of the state’s institutional system through legal means, everyone enjoyed a win-win situation with the exception of one continuing failure. We have never adequately trained or compensated direct-care staff.

To my mind, we require a new hybrid approach to advocacy and success. Agree only to what we want, demand it directly and in writing, be armed with a steel fist inside of a velvet glove and move forward toward our goals. There must be appropriate time limits for each step forward. Ultimately, a new class action may be required – frankly, it is my belief that the time for such an action is now.

Murray Schneps was the vice chairman of the Willowbrook Review Panel appointed by Judge Orrin G. Judd of the United States District Court, Eastern District of New York. He was a trial lawyer, advocate for the developmentally disabled, parent for his daughter, Lara, acting as a named plaintiff on her behalf in the Willowbrook Class Action, an attorney for the Willowbrook Review Panel and an attorney of the named plaintiffs in the Willowbrook Class Action. He recently wrote and published "I See Your Face Before Me," a memoir of his experiences as a parent and advocate for his daughter and all developmentally disabled.

* Willowbrook State School on Staten Island was a residential facility for developmentally disabled children and adults. The Willowbrook Review Panel was  a Federal monitoring group established by the U.S. District Court in 1975 and dismissed from its duties in 1987. According to its administrative history documents, the panel was to  monitor implementation of Consent Decree guidelines at Willowbrook which were intended to set new standards of care for its residents.