A Process We All Need to Understand

As the state gears up to close Woodbridge and North Jersey developmental centers we are again moving through an emotional and important part of that process. Media representatives, the general public and those lawmakers that don’t work on these kinds of issues regularly initially will be hearing about this process through concerned stories from family members, staff and residents of those two facilities about the negative effects these closures will have. Two articles in the New Jersey Spotlight are recent examples. http://www.njspotlight.com/stories/13/02/12/doing-the-right-thing-for-new-jersey-s-most-vulnerable-population/ http://www.njspotlight.com/stories/13/02/13/anxieties-arguments-about-where-profoundly-disabled-will-live/ Those concerns here are understandable and compelling. Nobody likes change initially, especially if it is a major change such as this, with extra uncertainties and anxieties because it was unexpected. Unfortunately, most big public policy decisions—ones that are the result of lengthy discussion, review, thoughtful calculation and changes in understanding, as in this case, about the best ways to serve the most people—have varying immediate effects on smaller numbers of individuals who were likely not to have been a part of that process and who feel like they are bearing the brunt of the load. In to some ways they are, in the short term. Long term though, experience has shown that their part of the load eases quite quickly, as the wide spread benefits became more and more evident. We must do this. It is the right thing. And it has to happen. The current system of aging centers and underfunded community homes is unsustainable. That’s just a fact. It is also a fact that former developmental center residents who are able to express their preference have alomost universally affirmed that they would rather live in same kinds of homes the rest of us live in, given the chance for that option and given the right supports to make it work. Why would their peers who have more difficulties communicating their preferences feel any different? Their families also have overwhelmingly suppored community-based homes once the transition had been made. It has been the trend nationwide for over forty years. The question has never been, in all the years we’ve delayed coming to grips with closing developmental centers here in New Jersey, if we should, but how we should. These are all facts. Facts we in the field have been discussing and re-discussing all these many years. It was discussed during the successful closure of North Princeton Developmental Center in the late 1990’s. It was discussed in the numerous articles I worked on during that process and follow up, where opponents of the closure came to embrace it. Families once voicing their emotional anxieties before the closure became champions later. Outcomes for individuals who moved were mostly favorable and often significantly so. But those individuals, those families, the media at that time and the public that were exposed to it all went through the process. And we need to do that again. Most, if not all, of the families of people living at Woodbridge and North Jersey have not yet been a part of any process around closing a large facility for people with developmental disabilities. They’ve been involved in their own lives, meeting their own day to day challenges. They need to go through a process and we need to help. The same is true for media representatives new to the issues, public officials who are unfamiliar with most of the details and a general public that simply wants their government to make sure people with developmental disabilities are not victimized or treated badly, get the supports they need and that all this is done in a way that responsibly spends the public funds necessary to accomplish that. While closing developmental centers, expanding more community options for those currently living there and bolstering the community supports system for everyone have been dominant themes inside the NJ beltway, if you will, most people believe that the developmental center system is fine. They believe that people with developmental disabilities have the same type of community-based system that people with mental illnesses were discharged to some years ago, with less than satisfactory results. They believe that a large institution with hundreds of staff is safer and provides more comprehensive oversight than smaller, community based options. They believe that initiatives such as these, the closure of big facilities and lots of staff, have to be to save money to plug other holes in the budget They don’t know that hundreds of thousands of people with all levels of developmental disabilities have successfully moved from institutions to community-based homes over the past forty years because those living arrangements have been proven to be better. They don’t know that the North Princeton closure was an unqualified success, finding community homes for most of the 500-plus residents there, winning over nearly all the family members who had expressed public objections to the closure, supporting all those who moved while still saving 10 million dollars that was invested in the community infrastructure to the benefit of all, and that those positive outcomes have lasted. They don’t know that community homes for people with developmental disabilities are not boarding homes, but are set up to be long-term, stable living options. They don’t know, by and large, that there are hundreds, thousands even, families and professionals providing supports for people with severe and profound developmental disabilities living in homes withing their communities where they belong. These are also facts. Helping people to be better informed is a crucial part of the process. Information must be accurate. There needs to be a recognition that there is a big difference between emotional concerns, as understandable as they may be, and the facts. In forging public policy it is the solid, fact-based data that must rule. It is in implementing those policies that we must give proper due to people’s anxieties and concerns. That is the process. It is good that New Jersey Spotlight is shining its light on this issue. If they want to be accurate, balanced and more helpful to their readers and the citizines of New Jersey, especially those developmental center parents stuggling to come to grips with change, they should talk to some families from the state’s Family Support movement. They need to explore why these families would never choose a developmental center for their son or daughter. These families desperately need the additional infrastructure investments to the state’s community supports system that the closure of these two facilities can bring. Many of them have sons and daughters with as serious and profound developmental disabilities as any developmental center resident but who recognize that however severe and profound the disability, their loved ones and others with similar levels of disability deserve a home—and no matter how you slice it an institution, however well run, managed and staffed, is not a home. It is an institution. Spotlight and other media outlets that cover the closure are to be applauded for taking the time to give this important topic the attnetion it deserves. But I would encourage them to do their homework. As a journalist I realize that interesting personal interviews–whether it’s DC families, Family Support families, advocates, union reps or public officials–are compelling, and easy. However, there is an important back story here. Over the forty years that the country has moved from the institutional model to community homes there have been a lot of stories written and a ton of data generated. For starters, Web search the North Princeton Developmental Center closure archives. Look into the experience of other states that have closed most or all of their centers. Contact the National Association of State Directors of Developmental Disabilities Services (NASDDDS)—here I’ll help you out http://www.nasddds.org/index.shtml . Ask them about the trends and the experiences of other states. Do some reading. Take a little time. It’ll pay off big time, for you as journalists and for thousands of individuals, families, lawmakers and readers who, contrary to popular belief, are not looking for just a story, they’re hoping for solutions.