Forward, Not Back

As New Jersey prepares to close two developmental centers–a huge undertaking that is the key to improving the lives of those who live there and the lives of more than 40,000 others in New Jersey with intellectual and developmental disabilities– — let’s not get sidetracked by old arguments and delays. We need to keep looking forward and keep our collective eyes on the ball, the success of this endeavor. We already have the blueprints to do this in the many institutions for people with developmental disabilities that have been closed across the country, including this state’s North Princeton DC. We are also informed by the ongoing studies that were done tracking residents from there over the years since that closure. The North Princeton closure was a model for success in how to close a large institution for people with developmental disabilities. Outcomes for former residents were closely monitored. Savings were directed back into the community infrastructure. By and large the residents and families that had worried about the change–unquestionably legitimate concerns given the magnitude of the initiative– were satisfied, often very pleased, with the results. These are all documented facts. In fact, that closure was so successful, a task force to end the waiting list in 10 years was, commissioned by the Legislature within a year of the closure and recommended three additional developmental centers between 1998 and 2008 patterned after the North Princeton experience. Many of us will remember what happened to that plan to end the waiting list. For those who don’t, it was shelved and ignored because of arguments, delaying tactics and politics similar to those that have bubbled up around the initial proposal to close Vineland and, now, the Totowa and Woodbridge closures. The North Princeton closure was heavily debated beforehand, watched closely throughout the closure, and followed up extensively. In addition, as mentioned above, national and international studies have been ongoing about institutional closures and outcomes. A 2009 review of the literature on deinstitutionalization of people with developmental disabilities by Raymond A. Lemay, Services to Children and Adults Plantagenet, Ontario found that, while there are valid concerns about an “underperformance by community-based services,”… “On the whole, the data are compelling: People, irrespective of their degree of disability, are apt to do better in the community on most measures and do no worse when it comes to challenging behaviours (sic).” The review further concludes that the studies reviewed found institutions were a dying model and that the trend away from them was unlikely to change. “Very simply, the institution cannot replace the community in providing individuals—including those with developmental and serious psychiatric disabilities—with the opportunities for the good life. There are no compelling client-related arguments left for keeping people with cognitive limitations, and possibly people with psychiatric disabilities, away from their families and communities.” Deinstitutionalization of People with Developmental Disabilities: A Review of the Literature Raymond A. Lemay, Services to Children and Adults, Plantagenet, Ontario, Canadian Journal of Community Mental Health, Vol. 28, No. 1, Spring 2009. We know what we have to do. We have to move forward with plans to reduce New Jersey’s reliance of developmental centers. We have to do it so the people who live there are moved safely and appropriately. We have to honor and support the workers who provide direct care and support to individuals with disabilities with appropriate compensation and job security so these skilled professionals and the people they serve can flourish in the community. We have to use these closures to help shore up the state’s community services by dedicating any freed up resources toward that end. Finally, we need to collectively tackle the one area of most concern cited in the studies above—any “under performance” in community services. This is where those concerned voices —if truly raised in the interest of people with developmental disabilities, which I believe they are by and large— should sing out. Adequate resources, oversight and quality assurance, increased input from those receiving community services and their families, training and support, health care, employment, recreation, these are the kinds of issues we all need to be watch dogging and advocating for. The way forward is pretty clear and, rest assured, given the magnitude of the challenges ahead there will much to critique. But Hail Mary passes at this point designed to slow down or stop the process are not productive. There’s always a different twist or spin that can be put on any issue. Look at the worldwide climate change debate. Despite overwhelming evidence as to the need to move forward with some actions to curb its effects, continued debate and “study” have muddied the waters and bogged it to a standstill. That happened here already between 1998 and the current effort. We can’t afford further delay.