Controversy continues regarding efforts around the country to close large state-run institutions for people with developmental disabilities. Many of these recent closure announcements have more to do with excessive costs (which are absurdly high) in tough budget times, combined with an ongoing inability to end serious abuse and neglect, as reported in the media in various locations.Both of those issues are of course serious instigators for institutional closure, but they are really symptoms of the true problem. The most compelling issue by far is that the support that can be provided at such facilities is inadequate, segregated from our society, and obsolete, when compared to the life quality and individualized support that can be offered in small, local community settings. The associated costs and abuse and negligence at institutions are outgrowths of a model that is badly flawed. No amount of video monitoring, quality assurance controls, new or rebuilt structures, or other measures can fix the fundamental problem.
In response, some families fall back on the “choice” argument (“we should have the option of knowing what’s best for our child, including institutionalization…”), which I can empathize with, but have discussed elsewhere in this blog as not being a sound argument. Others talk about the impact moving out would have on individuals. This is, of course, important, and the experiences in other states must be used to learn how to minimize any negative impact.
Also, there must be a community support system to move to that is functional and effective. None of this is easy, but all these issues are solvable, and don’t change the need for closure. We know this because a dozen other states have accomplished full state-wide closure reasonably successfully. There remain problems in some community settings to be sure, but they are a different set of problems on smaller scales with more individualized solutions.
But I want to put that complex discussion aside for a moment, and focus on the reactions of one key group to announcements of planned institutional closure – the employees who work there. This is the institutional staff; state employees, who, I’m sure, are caring people. Despite their compassion, they naturally view a facility closure through one lens, that of personal job loss.
As a result, their employee unions have reacted to announcements of intentions to close a facility with protest rallies. They have released scary statements regarding the huge economic impact their job loss will have on local communities. They are doing their mission to protect jobs, thus working hard to stop plans for moving people out and closing the center. Yet, there is a bigger picture – let’s consider this for a moment.
Certainly a significant job loss in any community is cause for concern. There would need to be steps taken to support transfers into other public sector positions, and provide for re-training and job placement. Job downsizing should come in stages whenever possible. But let’s get this straight. Public sector job loss is not the core priority when deciding whether an institution should close, nor should it be. What should be central at all times is what is the best we can do for those people living in institutions.
Unfortunately, state governments don’t always seem to weigh these factors in this way. In NJ, a task force is now reportedly reviewing closure plans based on several concerns. One is “the economic impact on the community in which the developmental center is located if that center were to close.” A second is “projected repair and maintenance costs of the center.”
These are considerations for planning how to do the closure, not for whether there should be one. That decision should be based firmly on one thing, and one thing only: What is best for the people that live there. Job security just does not stand equal to that. And in any informed discussion of service design, the evidence for quality service all points to community life with customized support.
If you ignore this central fact, and then untangle the arguments, what you have left is a group of vulnerable people kept in an unnecessary, obsolete, and potential harmful environment, so those who work there can continue in their jobs. How is this different from keeping people hostage to maintain a local economy?
Not only that, spending on institutions comes at a cost; this is taxpayer money that could be spent on improving and expanding needed community-based disability services, now burdened with wait lists, understaffed, and with inadequate training. If you were to set your spending priorities from scratch, there is nothing, and I mean nothing, that supports spending money on keeping people in facilities rather than supporting them in the community.
Yet, in Illinois, the state union, AFSCME, is fighting hard to prevent the Jacksonville Developmental Center from closing, sending letters to lawmakers and holding public protests.
In NJ, the announcement of the planned closure of the Vineland Center has caused a storm of controversy and protests (see above photo) from public union officials and workers.
In one NJ news report, a union official “pointed out that the elimination of over 1,400 jobs in a county with rampant unemployment would bring local businesses and the entire community down.” That statement was followed by the comment, “We’re not here just to collect a paycheck, we’re here because we care.”
I’m sure that union official truly believes that. But for it to be meaningful, one should do some research into what we have learned these last twenty years about serving people in non-segregated environments. That pairing of “we care” with “job loss” implies those issues are partners.
But if you really cared about what’s best for the people you supposedly work for, than you’d be protesting their continued needless isolation from society, not your paycheck.
Anonymous
The direct-care Union workers at a state-operated developmental in Ohio are about protecting their jobs and not one of our most vulernable citizens. When Ohio had two developmental centers close around 2005, two groups of people protested the loudest– the Union and the parents of the individuals.
I, at the time being newly employed at a developmental center, will have to admit I sided with the protesters. I was a family-member advocate (raised with an uncle with Down Syndrome that had been more like a brother to me). I easily fell for the protesters cries about the governor closing DCs and not having any consideration for those that depended on the services for their care— how heartless and cruel to prey on the needs of the vulnerable….those dirty politicians!
And well, I must admit, where else could I make 93K a year in a small town in Ohio? A state job with great pay and benefits! I felt I had hit the lotto– I was doing what I felt was my “calling” and almost making a 6 figure salary (heck- with step-raises I would soon be at 6 figures).
So, I attended the town hall meetings where the Union and family members gathered to get a message to our community that it simply could not afford to close our center (2 closures in our state had been enough)). I advocated for the people I felt were being victimized by the system (the voiceless and vulnerable) and for a job that I felt was my dream job and “calling”. Life was good.
However, I now realize it wasn’t what I thought it was– after working 4 years at the center, I learned I had been “duped”.
Yes- indeed– the voiceless and vulnerable were being “victimized” by the system– but not in the manner I had thought. They were being “victimized” because they were being imprisoned in a dysfucntional and corrupt system so people could keep jobs. Abuse and neglect was “covered-up”– people in highly paid administrative jobs like I was did not dare jeopardize their jobs. And the Union was like the Mafia– you didn’t betray the “brotherhood”. It was about protecting jobs. If you were a direct-care Union worker and you “ratted” on a “brother” and reported abuse and neglect, your coworkers made your life hell until you were forced to quit or management would get rid of you (an easy task when direct-care were initially hired on an intermittent basis and without Union protection– a way to test “loyality” to the system).
If abuse and neglect did get reported and the Union worker was terminated, the worker would often file a grievance with their Union and would often have their job reinstated– with back-pay and full benefits and senority reinstated– all to make the worker “whole” again. But how was the individual that suffered the abuse and/or neglect ever made “whole” again? They were forced to have the reinstated worker provide their care– a huge cost not only to the taxpayer paying for the reinstatemnt, but for the “victim” of the abuse and/or neglect to be forced to have the same person provide their care again.
I could go on and on…but I think I’ve made my point. If you don’t know what really goes on in these places– the parents, guardians and/or public– you would automatically side with the Union protesters and feel like the government doesn’t care about the poor and the voiceless and vulnerable. But if you know what I know and experienced what I did inside one, you know it’s really about protecting jobs and the economy…and at a HUGE cost– the cost of human lives.