by William Van Ornum, Ph.D. on
Since part of the mission of AMHF is to keep continual focus on the mental-health needs of the developmentally disabled, a recent article deserves our attention.
On June 5, 2011, the New York Times reported that Jonathan Carey, a thirteen-year-old boy who has autism, was asphyxiated and died in the back of a NYS-owned van from the program in which Jonathan was enrolled. The employee who asphyxiated Jonathan had a documented criminal history, and also was charged in one alleged incidence of abuse with Jonathan himself. Jonathan was a “consumer” (the word used in the past decade or so to describe residents) of the O. D. Heck Developmental Center, one of nine large institutions for the developmentally disabled in New York State.
Disconcertingly, as we are nearly 45 years past Robert F. Kennedy’s description of New York State’s large institutions as “a snake pit,” and nearly 40 years since Geraldo Rivera brought the abuses of Willowbrook to national attention, the Empire State now finds itself under scrutiny, again, for alleged abuse and maltreatment of the most vulnerable citizens under its care.
The Times alleges that those who administer New York State’s large institutions for the developmentally disabled have tolerated physical and psychological abuse, knowingly hired unqualified workers, ignored complaints from whistle-blowers, and failed to credibly investigate abuse and neglect occurring on their watch.
One employee is quoted:
“I’ve never seen any outfit run the way this place is,” said Jim Lynch, a direct-care worker in Brooklyn. “You report stuff, and then you get retaliated against. They want everything kept quiet. People that are outspoken attract the heat. I don’t know who to talk to when I see a problem. Nothing ever gets done.”
Appropriately, the Times notes that the problems depicted in the nine large New York centers may not be reflective of the state’s smaller community group homes nor of programs run by private agencies. Yet keeping this in mind, Jonathan’s family is quoted saying they had to take him out of a private program due to withholding of food and other interventions not in their son’s treatment plan. And just several days ago, the director of a small program in Kingston, New York, was indicted for theft of nearly $200,000 from residents in a scheme that involved regular skimming of large amounts of money from each person’s paycheck.
Although it may be tempting to recall Geraldo Rivera’s appropriation of Edward R. Murrow’s classic line, “on some stories, there is no other side,” we see this most recent article in the Times as a starting point, a conversation starter, to examine the complexity of caring for the developmentally disabled. There is no excuse for abuse, but at the same time, to prevent further occurrences, ongoing input from people of goodwill, within and outside of the system, is needed.
For example, it is incredibly difficult to recruit and keep direct-care workers in most agencies. The pay is low, there is little chance for promotion, there are night hours and shift changes, and the work is dangerous: perhaps even riskier than being a police or corrections officer. Some of the developmentally disabled, particularly when there is also a serious psychiatric diagnosis, display out-of-control behaviors that remain despite medication, behavior therapy, and a consistent environment. (One agency we know of has a certification program for direct-care workers, one where they can advance in professional recognition and salary. This is a highly promising development.)
But while noting this, another aspect of the Times piece is the huge amount of federal money, including Medicaid funds, going into the NYS system. Where is the money going? Perhaps it is being used in the other community programs run by the state. But here, it seems a more transparent fiscal accounting procedure is in order.
It would be unfortunate if the public were to form negative judgments concerning other agencies apart from the nine large state centers that the Times is examining. There are many outstanding private and public agencies serving the developmentally disabled across the country, many with active boards of directors that include parents of the individuals in treatment. Having these parents on the boards is often one of the best measures of quality assurance in an agency program, and one wonders about the role of parents, especially in being aware of and following up on “special incidents” (i.e., abuse, deaths) in the program the Times is covering.
In a sense, the Times is writing about a “single-payer health system” when describing the nine large New York developmental centers. Is bureaucratic abuse more likely here than in smaller systems with more direct accountability such as through boards of directors that include parents? The relevance to a system of national health care is direct, unsettling, and provocative.
We promise to watch for other developments in this story, and hope that print, radio, and television media (as well as the considerable power of the blogsphere) devote their resources to continuous exploration. The integrity and quality of a nation is in proportion to how it treats its most vulnerable citizens. We hope not to be disappointed in our country’s response to what is raised by these New York Times articles.