Archives 2012

choice research

The Support Gap: Research to Practice and Back

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Over the years, I have visited many agencies doing their work in the service of people with disabilities. In the process I’ve met many caring staff. But caring, while important, is really far from enough for people with disabilities to succeed. We also need to understand people’s goals and how to help them get there. A big problem we face is what I call the “Support Gap.”
The Support Gap has really two components. 
One relates to the flow from research to practice. It is the difference between what research has already uncovered (what we should know how to do), and what we actually do in the disability field. The size of this gap is striking. Disability thinkers have developed various impressive approaches, even technologies, if you will. We now know so much more about life planning, for example, than 20 years ago. There are a number of books and other resources available on ways to facilitate person-centered planning using various approaches. The same is true about job development and support, community living, environmental modification, assistive technology, positive behavioral support, and so on.
Unfortunately, in a system serving over a million people with developmental disabilities, most providers have not come close to using such state of the art approaches as their standard. It’s not for lack of desire; but funding, turnover, inefficient or unavailable training are too often the case they face.
The second component relates to what research hasn’t studied, or the flow from practice to research. It seems to me that anecdotally and based on studies, we have good reason to believe generally that person-centered, community approaches lead to superior results for people with disabilities. And philosophically, it makes a great deal more sense to focus on individual capacities and desired futures as opposed to deficits and remediation. 
But frankly, there is little quality research to support how best to provide these kind of services. What’s more, we know practically nothing about what specific approaches within the general person-centered paradigm work better, or when or how to use them in certain types of situations, such as in careers, community inclusion, or housing. 
Consider current housing models used for people with disabilities. The variation in cost for different residential homes is huge. Some institutional settings can run upwards of $200,000 US per resident annually, while family support or more individualized supported living costs a fraction of that amount. Even group home costs range widely from state-to-state. 
Even more important than cost, the quality of life experienced in these various settings also varies widely from model to model, including within a model from place to place. Think of it, two different six-person group homes just miles apart can produce wide-ranging outcomes in life experience and cost. 
It should trouble policymakers and taxpayers that so little is known about the outcomes of spending billions of dollars. As a result, the field argues about models on a philosophical level – what is the best approach from a cultural perspective, or whether closing an institution removes “choice,” for instance. We really need to align research and practice more efficiently. Then as we learn the answers, we can begin to align the system to what works best and is most cost-efficient, and at the same time, aligning our supports to be non-discriminatory and socially just.
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Token Inclusion: A Dangerous Perversion

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The concept of diversity as it is applied to including people with disabilities in common community settings is well-understood and embraced by most people in principle. After all, no one wants to be seen as “anti-disability,” and diversity is a highly valued buzz word these days. So, as a concept, inclusion is a nice, progressive idea to almost everyone… except when it requires effort or deep thought about what it truly entails.
I focus a lot of discussion on this blog on the harmful effects of obvious segregation – in institutions, large congregate residences, sheltered workshops, and other facility-based day programs. But what happens when an effort is made to provide inclusive experiences that fall far short?
Unfortunately, what often happens is that such effort disguises the original problem. What passes for inclusion is held up as an example, when in fact it is not inclusive at all, just a bit less segregated. This is dangerous for people with disabilities. It blurs the issue of “true belonging” into an incomplete “solution” that makes people think we have made segregation a thing of the past.
For example, a student with a disability is brought into gym class with other students without disabilities. Be she is not offered an opportunity to participate, and so “helps” the gym teacher, which largely means holding the teacher’s clipboard during class. Or eight workers with disabilities from a sheltered workshop are given space in a business location where they can continue their sheltered work, but are now considered “integrated” because they work at a real business building.
The school then proudly talks about its inclusionary models, and the workshop highlights its integrated supported employment program. But are these examples of real inclusion? No, not at all. This is merely token inclusion, but these examples can make people believe that these types of approaches are useful ways to diminish segregation. One might argue these situations are “better” than where people were. But this is not the issue, nor should it be the standard. It is not even a compromise, as they provide little real benefit and mask the issue of non-belonging as somehow closer to being solved.
Segregation is not just a physical presence apart from others. It also is a social, emotional and psychological distancing. And being “included” does not just mean you are in the same physical space (see photo above). It also means you are participating to the fullest extent possible, in the same manner (with accommodations as needed) and with the same respect, privileges, and dignity as others in the situation. It implies the social role you are offered (i.e., I’m a member of the school choir) is meaningful, and you are a true peer among others in that setting, even if you require support or accommodation for your participation to be meaningful.
Another example of this issue can be found in the recent positive trends of corporate hiring of people with developmental disabilities. Unfortunately, some companies approached this by setting up new locations that are designed to contain a high percentage of jobs filled by workers with disabilities. Their efforts to include people with disabilities in their workforce is laudable, but the technique is flawed. 
If a company is interested in supporting the hiring of a diverse workforce, then why not develop an approach at all your locations for more customized jobs that can support many people with disabilities, and not just one kind of job in a few places. Again, the argument is not whether the people working in concentrated business-owned centers are better off than before. I’m sure they are, if only because being in a workshop is so below the norm of a typical work expectation for anyone. But why replace a tragic solution with one that still congregates people, and also directs workers with disabilities into a small career wedge where a job location matters far more than one’s vocational interests? 
This illustrates the confusion of a faulty approach with an actual solution. The danger then lies in people focusing energy and time in “replicating” this new perceived solution, instead of focusing on developing full inclusion – and that is the real tragedy. We really should stop inventing new “models,” and instead start customizing what is already in our communities so more people can access what all of us want – real jobs, homes, recreation, social opportunities, and more. It doesn’t take more money and effort, just a different attitude.
  
supported employment

Lessons from Down Under

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I am writing this post after providing a week’s worth of training to the staff of NOVA Employment, just outside of Sydney, Australia. This is my second visit to support the work of this agency “down under,” and I have a number of impressions to share.
The organization does not run congregated services; it focuses on job placement. And because placements matter, it does something few American agencies do. NOVA requires staff to make a certain number of employer contacts per week, month, and year. It also sets goals for resulting hires. And it actually keeps track. If you exceed your target, there are financial incentives. If you keep missing your goal, you will be provided more intensive training. And if this isn’t productive, you will likely either be assigned to some other capacity, or ultimately, let go.
If this sounds harsh to US providers, it’s because we still haven’t largely linked job development outcomes, and hence work outcomes, to provider funding in a serious way. It’s been an unfortunate reality that some US disability agencies have been funded year after year, despite poor outcomes and little improvement.
But it’s not like the job developers at NOVA are on their own. There is a significant commitment to staff development and training. Regular and demanding seminars are offered in networking and job development. In addition, (and the reason I am here) is that the management of the agency took a self-critical look at the quality of their post-placement support, and decided it needed to invest in new strategies. The message to staff is clear – it’s not just the number of placements you produce, but the quality of the job match as well.
The result of all this, in addition to valuing staff in other ways, is a productive agency that continually finds well-matched jobs for people with intellectual and developmental disabilities, autism, and psychiatric disabilities.
Those of you who know me know that I’m not easily impressed. And NOVA will readily concede their services are not beyond improvement, but these folks are refreshing in how they are going about their business. The focus is on quality jobs, and self-criticism that leads to self-improvement is welcome. We can learn from this attitude. I certainly have. Despite 20-hour plane rides, jet lag, and a very full schedule, I go home energized.
Congratulations Martin Wren, Anne Goyer, and the staff at NOVA. And thanks for not making me eat that vegemite (phew). Well done, mates. Keep at it.
exploitation

Salary Disparity in Disability Services: The Other 1%

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The Occupy Wall Street movement that began last year was in part to protest economic inequality. A main claim is that large corporations, the “1%,” control the financial system in a way that benefits themselves most of all. Between 1979 and 2007, the incomes of the top 1% of Americans increased 275%. But 60% of those in the middle class had increased income of only 40%, according to the US Congressional Budget Office.
This troubling theme of inequity resonates for many of us who work hard to stay afloat, but I think it also applies to the disability service system. In Oregon, a state review of agency salaries found five top employees at one non-profit earning a total of $1.5 million dollars. This same agency underwent a Dept. of Justice investigation earlier due to the CEO earning over $800,000 in 2004. In New York, the NY Times reported the following: “…
[two management staff] earned close to $1 million a year each as the two top executives running a Medicaid-financed nonprofit organization serving the developmentally disabled. They each had luxury cars paid for with public money. And when their children went to college, they could pass on the tuition bills to their nonprofit group.”
I fully understand that these excesses are not the norm. As a CEO myself in the 1980s, running two different multi-million dollar agencies, I earned between $27,000 and $38,000 annually. And I have nothing against a disability manager who works hard and earns (and deserves) a good income today. But there is a disturbing pattern, especially in large agencies, that demonstrates a huge gap between management, workers, and the wages of people in the workshops they run. We should not tolerate a system that allows, and in some cases encourages, huge wage disparities. Especially pertinent is that many of the workers with disabilities in sheltered workshops run by such agencies earn less than the federal minimum wage. (Currently about 420,000 workers with disabilities earn sub-minimum wage.)
What is a fair salary for those who manage agencies that support people with disabilities? The boards of directors of agencies I have looked at say that it is a function of the size of the agency, its budget, and its complexity. That is fair, but also incomplete. They imply that they could not retain top management talent unless they pay competitive executive level salaries. But what is “competitive?” And to what are we comparing? I think such agencies mistakenly equate the mission and role of management of non-profits with for-profits. Compensation is only a piece of the motivation of those of us who work with and manage resources to support people with disabilities.
Another factor to determine whether disparity exists is to consider two key factors: the front-line staff pay and the pay of the workers with disabilities supported by the agency. ANCOR, the American Network of Community Options and Resources, found that the average wage for private agency direct service staff was just over $10 per hour in 2009, leading to excessive turnover. Of course, staff turnover ultimately compromises services for people with disabilities.
Do you agree this is a problem? And is there a solution? I recommend we take a hard look at how disability resources are being prioritized. 
1. Publicly funded disability agencies need to become transparent in regards to their executive pay and benefits, average staff pay scales, and vocational outcome wages for the people they serve. After all, they are spending mostly tax dollars or charitable funding. This will open up disparities to public scrutiny, which is appropriate for a publicly funded entity.
2. Funding agencies should set clearer parameters for fair wage distributions and also set expectations for flat hierarchies for the agencies with whom they contract. Flat structures place more emphasis on career development as opposed to job promotion. Heavily layered agencies typically spend more money on non-direct services.
3. End sub-minimum wage as a legitimate outcome of vocational services for people with disabilities. Minimum wage should be universal. Really, it is completely outrageous that an agency CEO with a six-figure income will provide a paycheck to the people he or she is pledged to serve for as low as $.22 per hour.

sheltered workshops

Supported Employment and the Higgs Boson

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I have always been a bit of a science geek. I find a sense of understanding about life, and even spirituality, from the deep discoveries we are making in the cosmos, particle physics, and quantum mechanics. And the pace of recent discoveries has been exhilarating. Just a few short years ago, we only knew of the planets in our own solar system. Now the number of identified planets is close to 800. This kind of thing alters the perception of our place in the universe.

What I also love about science is illustrated by the recent confirmation of the Higgs boson, a tiny particle that’s been theorized but never found. Without getting into a technical description, discovering or ruling out the Higgs would alter our fundamental understanding of how things are and how matter, including ourselves, exists. It is a monumental achievement in science.

But before the announcement of the Higgs, like any theory without evidence, there were conflicting scientific opinions. A group of respected physicists doubted the particle would ever be found, and believed that it likely didn’t exist.

But here is what happened. After a good deal of research, the particle was confirmed. So what did the scientists who had a different view do? Did they refuse to accept the results? No. They discarded their own carefully developed theories and embraced the new evidence. Basically they said, “We were wrong; let’s move on in a world where the Higgs exists.”

Now compare this to the evidence facing disability providers regarding segregated employment and sheltered workshops. Researcher Bob Cimera offered this succinct summary of a 2012 study: “…individuals from sheltered workshops earned less ($118.55 versus $137.20 per week), worked fewer hours (22.44 versus 24.78), and cost substantially more to serve ($7,894.63 versus $4,542.65) than peers who did not participate in sheltered workshops prior to become supported employees.”

Put another way, individuals who participate in sheltered workshops prior to becoming employed in the community via supported employment were “worse off than individuals who never participated in sheltered workshops.”

So, unless there is some contradictory evidence, wouldn’t it make sense to start planning a better way to fund day services than sheltered work? Yet, when this is proposed, the protesting roar of established providers has been loud. And it is based on their belief that “many people need a workshop; they are not productive enough to work in mainstream employment.” Well, where is the evidence? So far, all the research says that simply is not true.

Sheltered work doesn’t work – we have found our Higgs boson in the disability field, but most everyone still refuses to accept it.

conversion segregation segregation supported employment sheltered workshops

Attention Workshops: The ADA Integration Mandate Applies to You

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Employment services are included in the integration mandate of the ADA! This recent ruling in Oregon by United States Magistrate Judge Janice Stewart is a huge landmark decision. It should cheer advocates who are working to slow and eventually end the growing numbers of people with disabilities needlessly spending their days in segregated sheltered workshops.

Similar  to many states, most Oregonians with developmental disabilities in vocational services work in sheltered workshops, even though most would prefer to work in a real job. Each year, more are referred to these facilities. Sadly, this includes graduating students with disabilities – who should never need to see the inside of a workshop. This year a lawsuit spearheaded by Disability Rights Oregon was brought on behalf of 2300 individuals with disabilities in that state being needlessly kept away from real job opportunities. The suit charges that the state is violating the ADA by not providing employment services to people with disabilities in the most integrated settings appropriate. Now, the judge in the case has ruled that the plaintiffs can make such a claim under the ADA.

A legal basis for the suit was a previous Supreme Court decision known as Olmstead. Olmstead found that Title II of the ADA requires states to offer services in the most integrated setting possible, including shifting programs from segregated to integrated settings. Up to now, litigation under Olmstead has focused on supporting people in residential institutions to move to community settings. This has been followed by suits about other congregate settings such as nursing homes that claim to be community-based, but really serve as institutions, unnecessarily segregated people as well. Most recently, advocates have used Olmstead to challenge waiting lists and even state budget cuts. But this case is the first specific ruling regarding employment services and the integration mandate of the ADA.

In response to the suit, Oregon filed a Motion to Dismiss the case, saying that employment claims cannot be made under Title II of the ADA and that Olmstead does not apply to employment services. In her ruling, Judge Stewart stated “…this case does not involve ’employment,’ but instead involves the state’s provision (or failure to provide) ‘integrated employment services, including supported employment programs.'” The Judge thus affirmed that employment services is included in the integration referred to in the ADA, and gave the Plaintiffs time to file an amended complaint due to wording problems in the complaint, so further rulings are still to come on the case.

Oregon is just the tip of an iceberg. The state currently spends $30 million a year for individuals with disabilities to be in  sheltered workshops – the lion’s hare of state vocational service dollars. With few exceptions, this is also true nationally. In NY, some estimates are close to a billion dollars spent for segregated day services. Yet, a 2010 study by Oregon’s own agency notes that cumulative costs generated by sheltered employees may be as much as three times higher than the cumulative costs generated by supported employees – $19,388 versus $6,618.”

Even though every state provides supported employment, on average these services represent only one of every five people served. Vastly more money is spent on segregation than on integration. And so far, most vocational service providers have responded by circling the wagons to protect their facilities. Most states do not even have an Olmstead plan related to phasing in more integrated employment services. Very few have any practical plan to reduce the population in sheltered workshops in a thoughtful way over time. Instead, there are vague goals of improving employment outcomes and little supporting funding. It seems that state money just keeps flowing to how and where it was spent previously, so real change never comes.

So maybe the time has finally arrived for us all to recognize the injustice of this. And apparently, it has taken a lawsuit to jump-start it. I say it’s about time.

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A Message from the Future

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Hello friends, my name is Tramus. I have hijacked Dale’s blog to give you a message. I am from the future, the year 2050. If you read Dale’s blog, you must be what you used to call, a “disability service provider.” You probably have a building where people come to learn or work. Or a facility where the state pays you to house people with disabilities. Here’s the thing – I am here to warn you – you will become obsolete.
We found that it was a waste to build walls around people because they were slower, looked or acted differently, or had trouble learning. Turns out that when your goal is to help people who face challenges in life to have a good life, they have to actually be in real life to get anywhere. In our time, we found that we could provide much better assistance to people with “disabilities” (we got rid of that word a while ago) by supporting and opening up their own communities around them. 
Everyone has people they like to be with, things they really like to do, and everyone has something within them that can be productive for a business. Once you recognize that fact, you can help people build a decent home and work life. 
I have to tell you, it amazes me how long people can tolerate spending billions on things that are shown to have poor outcomes. Of course, it was that way with climate change, I guess. By the time there was a consensus, we had to abandon half our coastal cities.
Anyway, here’s my advice. 
Stop protecting your buildings, your programs, your job descriptions, and territory. Protect people’s rights to belong instead.
Stop trying to fix people’s shortcomings to make them community-ready. Assume they are a part of the community and start focusing on what people can do there successfully. 
Let go of your precious budgets tied to programs and buildings. Money should be attached to the people you serve. 
Remember to redefine your goals. No one needs a workshop. People do need help with jobs. No one needs a group home or an institution. People do need help to live in a nice home. Don’t confuse your tools with the goals. The goals are life; you just invented the tools, and they might not work the best. When you use the wrong tool, you sometimes mess up the goal. Ever try to hammer a nail with the back of a screwdriver? 
You have limited resources and you must spend them wisely. Every facility program takes something away from community building. Stop filling the buildings. Instead expand the variety of supports people can tap when they are working, at home, or in their communities. 
If you start now, you can be part of the change. Thanks for listening! I will now return the next regularly scheduled blog back to Dale. 
conversion segregation sheltered workshops

A Response to ACCSES: We Believe NDRN is On the Mark Regarding the Need to End Segregation and Exploitation

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Open Response Letter Regarding ACCSES Response to the National Disability Rights Network (NDRN) Report
Members of the Senate Committee on Health, Education, Labor and Pensions:
In an April 16, 2012 letter to the Senate Committee on Health, Education, Labor and Pensions, ACCSES CEO Terry Farmer writes “strong opposition to the recommendations made by the National Disability Rights Network (NDRN) in its report
[Beyond Segregated and Exploited].” 
My colleague, Laura Owens, APSE president, and I support the NDRN Report and write now to explain why the ACCSES letter in fact demonstrates why the segregation and high unemployment rate of people with disabilities has continued so long.
The NDRN Report cites the highly unnecessary segregated nature of employment services received by people with disabilities, commonly called sheltered work. The report recommends ending such services, along with the obsolete practice of paying individuals sub-minimum wage, which in some cases have been literally pennies per hour. (For example, a Wisconsin survey found workers earning as low as two cents per hour.) The NDRN Report asks for greater promotion of integrated employment and increased labor protections for workers with disabilities. We support these recommendations fully, and we are deeply disappointed that ACCSES would abandon such principles.
Clearly the ACCSES letter illustrates a disturbing gap between what most disability service providers do and providing people with disabilities what they actually want and need, not to mention contemporary research. In January, 2012, a class action lawsuit was filed challenging Oregon’s failure to provide supported employment services to more than 2,300 of its residents who are segregated in sheltered workshops. One of the plaintiffs, Paula Lane, earned about 40 cents per hour. Yet, Lane has repeatedly asked for a real community job at competitive wage. A 2007 study supports the idea that people with disabilities prefer real jobs. Researchers surveyed adults with intellectual disabilities in sheltered workshops, their respective families or caregivers, and staff members in these workshops. They found large majorities of all of these groups, including staff, felt individuals working in sheltered workshops would prefer employment in the community and could perform outside workshops if support was made available.
Despite the fact that the large majority of disability funding goes to segregated services, research has shown no support for the efficacy of those services. One 2012 study showed that individuals who participated in sheltered workshops earned significantly less, and cost nearly two and half times more per person to serve, than their non-sheltered workshop peers. A similar 2011 study found, “…while what individuals learned in sheltered workshops didn’t improve their employability, it did appear to make them more costly to train.”
So, what is the response by the organization said to represent the provider agencies who continue to provide 1960-based services in the face of conflicting evidence? It seems to be to put its collective head in the sand. Rather than acknowledge the problem and talk about ways to manage the phase-out of segregation, and means to promote evidence-based practices, they have chosen to complain that exposing shortcomings is troublesome, saying “Pitting people with disabilities against their disability service providers is a divide and conquer strategy that distorts the widely shared goal of employment for people with disabilities.”
Divide and conquer? Workers with disabilities are already impoverished with the lowest employment rate and income of any minority group in this country. What’s left to conquer? Right now most disability agencies are spending money on programs that do not produce needed outcomes. The ACCSES letter states the NDRN recommendations would “curtail, restrict, and deny employment options, choices, and opportunities.” Remarkably, the evidence shows that this is exactly what the current system has been doing for the last 30 years. Rather than continue the failed policies of the past, let’s commit to the innovative ideas proposed in the NDRN recommendations.
Dale DiLeo, Advocate, Past-President, APSE
Laura A. Owens, Ph.D., Executive Director, APSE

conversion institutions segregation

The Top 5 Reasons Why We Haven’t Yet Ended Disability Segregation

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1. Fear of Change
There is a big, obsolete, but functioning service structure out there, with people in jobs, agencies owning buildings, policies about how to get in and out of them, and billions of dollars to make it work. It’s a giant game of mousetrap, easily able to fail when one part breaks, but there it is. Start changing pieces and the whole structure might come down.
Then, on a smaller scale, are families and the lives of their sons and daughters. Moving away from a workshop, an institution, or even a group home, into a life in the community, can be daunting. The only way to manage this fear is to support, shape, and give things time. People often use the fear of change to defeat things by playing the “they will have nothing then” card. But change shouldn’t close existing systems overnight. It should be planful and make sense over time.
2. The Tendency to Overcomplicate
As far as I can tell, this habit seems to correlate with how many letters come after your name, as in degrees, certifications, or title. We really don’t need more studies, grant proposals, 5-year plans, or task forces. I know policy problems can be complex, but the process and answers are straightforward if we keep the goals clear. The answer is never a paper or a task force; those are just tools that on rare occasions can lead to answers, but generally just produce even more paper or meetings. What is needed is policy directives, a funding change, or a grass roots action that takes things where they need to go. People need good jobs; not programs, training centers, or social enterprises. People need real homes, not residential facilities. 
3. Lack of Leadership
It takes guts to change anything, especially if you are in charge of policy. Most leaders are cautious and politic. This is sensible, but not if it prevents doing what’s right. 
4. Belief that Significant Disabilities are Best Fixed in Buildings
This is simply no longer true, if it ever was. Yet, people still justify sheltered workshops, institutions, day programs,and other facilities as necessary for those with “more severe” disabilities. Even though there is: no… evidence… to… support… facility… services.
5.??? I have about ten more… but, i am going to leave this one for you. Add your fifth obstacle, and any ideas you might have on how to overcome it, by leaving a comment here. 
institutions segregation

Let Me Get This Straight. You Don’t Want the Institution to Close Because You’ll Lose YOUR JOB?

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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.