Benevolent Ableism: When Help Isn’t Helping

If you are unfamiliar with the term “ableism”, it is a word, much like racism, that describes a societal condition that leads to the widespread discrimination and segregation, but in this case focused on those with a disability label.

If ableism describes the culture that subjects people with disabilities to rejection, how do we analyze a service system that tries to help people, but in doing so, ends up reinforcing ablistic values of the culture? This is something I call “benevolent ableism.” when well-meaning people set up programs or services that also segregate or send messages of stigma due to using disability as the defining core of the services, rather than such things as individualism, quality of life, informed choice, and inclusion.

Historically, we have seen benevolent ableism in the development of sheltered workshops, group homes, and day activity programs, which were touted as the alternatives to institutionalization, which itself was considered a benevolent service of its time. Unfortunately, all these models, while offering an option instead of something worse, still kept people from experiencing the kind of life they deserve.

The challenge of benevolent ableism is that those who perpetuate it are well-meaning, caring folks who feel their actions are improving the lives of people with disabilities. But, unfortunately, efforts to help do not automatically equal actual improvement of lives. What are the problems?

1. Helpers Have More Power than their Recipients
Those who help hold all the cards; that is, disability service professionals and not those in need of support, mange the funding, call the shots and make the rules.

2. Helping Programs Arise from Prevailing Disability Service Fashions
Various disability service models have come in vogue over the years, and what is popular often determines what form the help will take. Sometimes what is popular has been poorly researched, if studied at all, and not held to any level of accountability. For example, studies have produced no evidence that time spent in sheltered workshops helps the employability of people with disabilities. In fact, the opposite is true.

3. Helpers Can Succumb to a Rescue Mentality
Those who help, regardless of how well-intentioned their motives, can easily take on the role of savior and protector against all others. This dampens their ability to hear genuine criticism, insulates their approach, and at the same time, places the people being assisted as helpless without their rescuer. The rescuer will often have the individual being helped follow a path that leads to dependency rather that self-sufficiency.

In the end, benevolent ableism is often at the root of what is keeping those who mange models that segregate and isolate people with disabilities from changing what is obsolete. The rescue mentality, the resistance to innovation, and the self-serving “we know what’s best” is ultimately preventing people with disabilities from more individualized supports that could lead to more inclusive lives in our communities.

If the disability field is to support the quality of life for people, we must realize that the concept “quality of life” can be a very elusive and varied goal for each individual. We should all, including those of us who are advocates for change in the existing system, have an openness to hear views that challenge our thinking. After all, if we are to escape benevolent ableism, we could all use a little more humility in our efforts to help.

Thoughts on Group Service Models for People with Disabilities

In my speaking and writing, I often tout the need for services to be individualized, and take issue with the congregate models we generally see from agencies and schools in the forms of group homes, day programs, and classrooms. Often, there is pushback from families and providers. I frequently hear:
– “What’s wrong with letting people socialize with each other?”
– “It’s their choice to be with each other.”
– “I’m
[Jewish, Italian, African-American, etc.] and [live, work, play] with people with my same label.”
Good points, but these arguments miss the mark. They represent a kind of binary thinking (disability groups are bad/good) that is all too common. They oversimplify social grouping, which is a sophisticated sociological phenomena. Understanding how groups function is a key to successful individual community life as well as personal self-worth. 
Groups can provide important social cohesion. This can be very positive for when an individual wants to validate his or her social identity, or share experiences with people who have some commonality. For a repressed minority group, it can be particularly important. A person can establish self-identity and take pride in it. In-group members relate with others who have shared experiences and cultural expression. Group members can form a basis for friendship, and advocacy of the shared commonality. Indeed, many people who are deaf, or who have dwarfism, for example, express strong preferences about living among others with the same life situation for a variety of reasons. And peer support groups for persons with mental illness have been shown to be helpful for group members.
But the difference on making an educated decision to voluntarily join a group for social cohesion, support, or advocacy, versus having a group experience imposed on you is huge, especially in regards to individuals with disabilities. People benefit from having a range of social experiences and participating in groups defined by different gathering reasons, and then being able to make educated choices about how they want to experience their communities. 
There is also an important social perception issue related to disenfranchised groups in which the group members are subject to negative stereotypes. What happens is that when an individual is seen as part of a group, the group commonality becomes prominent and defining. This leads to sociological issues when the commonality is not particularly valued, including prejudice and bias, intergroup hostility, and discrimination.
Group definition plays out in the context of how providers organize services. If you have a certain “functioning level,” or a label such as autism, behavior problem, intellectual disability, etc., your service experience will likely be more defined by that characteristic, rather than by your personal life needs (job, home, etc.). While a “treating-the-problem approach” is common in a medical model, it produces a severely limiting life experience for someone with a disability. They become “boxed in” by perceived and potentially misunderstood disability and support needs in terms of employment, housing, recreation, and more. Not only that, but individuals with disabilities often find themselves surrounded by others with the same disability or “level of function,” limiting access to others who might mentor, model, or perform at a higher level.
Fully understanding how to make good decisions about what groups to be a part of, in what context, and for how much of one’s life is a big decision people must make. Whom do I live with, what kind of work do I do, whom do I have fun with are major questions for us all. What professionals shouldn’t do, though, is track people into pre-made groups as answers to these questions based on their disability label. This ultimately limits the answers to those models that disability professionals have artificially created. 
So, consider the kinds of questions we ask:
  • It’s not: What disability work crew you want to join?; It’s: What kind of job do you prefer?
  • It’s not: What group home you want?; It’s: How do you want to live and with whom? 
  • It’s not: Do you want to go to the mall with other people from your residential placement?; It’s: What do you want to do for fun and with whom?

And remember, if all your previous experiences have been defined by group homes, workshops, crews and enclaves, and all your friendships have developed from group home co-residents placed by others, then saying your current situation is your “preference” is really not choosing at all. When someone understandably selects the only thing they have known, then we have failed to support him or her in understanding all the possibilities.

Workshops: The Burden of Proof is On You

Over the last year, I’ve been in front of numerous audiences to discuss the concept of Employment First and the need to phase out facility-based sheltered workshops. I don’t make the argument lightly. It is a wholesale change of focus for many. It uproots individuals from their comfort zone. It is threatening to agencies and parents. It requires funding and core policy shifts. 

Yet, I have no doubt it is the right thing to do. And not just because it seems right from a value point of view, which it does. The reasons are multiple, and added up they are compelling.
1. Research has unequivocally found that those who attend workshops, when matched to those who don’t, earn less, have more limited vocational experience, and ultimately take longer to find jobs and cost more to serve over time. 
2. Those who experience community employment and sheltered work choose community employment as their preference.
3. Segregation of people with disabilities has proven to make them more open to neglect, abuse, and exploitation.
But regardless, I find that most of those who refuse to make changes to a sheltered work system simply aren’t listening. They don’t want to examine evidence, because they see no need to change what they are comfortable doing. The threat of change, and the likely corresponding difficulties that go with any change, are too troublesome.
But the burden of proof should always rest on those who have put people in environments that deviate from the typical experiences of our communities. We really shouldn’t have to prove community is better. Before placing someone in a workshop (or institution, group home, day habilitation, etc.) that program should first show evidence their outcomes exceed what can be experienced by people with disabilities in a community setting with reasonable-costing support. It’s like prescribing medication. Do the gains outweigh the side effects? Before you take any drug that will have an impact on your health, you would want to know what all its effects will likely be.
The default setting should always be what is typically experienced by community members as it applies to the life of a person with a disability, with reasonable support as needed.
All disability support, programs and interventions are actually accommodations, from a wheelchair to supported employment to sheltered work. The level of deviation from typical life varies in scale with each, as do their outcomes. When a disability program deviates from typical experience, there must be a cost-benefit analysis. That is, weigh the benefits of the intervention against the costs, including price, difficulty, risk of stereotyping and discrimination, and the risk of reducing quality of life and life experience. 
For example, clearly a wheelchair has great benefits in increased mobility and corresponding independence. Compare this to its costs, which is not only its price, but also includes risk of discrimination and false stereotypes of lower intelligence, productivity, and more that people in wheelchairs have wrongly experienced. Despite the risks, most people with mobility needs use a wheelchair and confront the related issues.
But for workshops, the evidence clearly points to community employment as a better cost-benefit result. Maybe in the past, sheltered work showed a better outcome for individuals who would otherwise sit at home and do nothing; but that isn’t, nor should be, the situation today. Sheltered work is not today’s answer to disability unemployment. Disability facilities, the burden of proof lies with you. And there is no evidence there.

The Problem with Pro-Inclusion but Not Anti-Segregation

I recently gave a speech at a conference, and afterwards was approached by an individual who had a pointed criticism of my talk. “I support your message of inclusion, but why do you have to argue against facilities? Most of us work in these places. They will eventually change and workshops and day programs will just disappear if we do a good job with inclusion.”
His point was that we can change things without negativity. We don’t need to highlight the problems, just highlight the better solutions. And once we start getting people jobs, better homes, and more community support, more traditional programs will evolve. Agencies will no longer need or use facilities. He concluded his argument, saying that worrying about facilities just takes up too much energy and disrupts the field.
So, can inclusion of people with disabilities be promoted without fighting to end existing segregation?
Sadly, no. And the evidence against “waiting for evolution” is persuasive.
First, think about other social movements. Consider the long struggle for racial equality. Nearly 150 years of effort has demonstrated you cannot obtain civil rights without acting to end segregation. You cannot leave people in their isolated homes, schools, workplaces, and busses, and as we offer opportunities, hope the old paradigms will fade away. They didn’t and they don’t. It took legislation, civil disobedience, media exposés, demonstrations and more to get closer to inclusion. It took active work against segregation.
It is really no different in any social movement, including the disability field. For instance, the number of institutional residents with intellectual disabilities has declined steadily the last fifty years, but nearly all of this is due to class-action lawsuits. In other disability service areas, segregation actually seems to be increasing. Recent studies have shown steady gains in the use of facility-based work. Also, “non-work” programs have increased dramatically. Despite increases in supported living and employment in terms of pure numbers, the percentage of inclusive programs relative to all services haven’t gained at all in the last 15 years, and the gap seems to be widening.
A great illustration of this is supported employment. Segregation has not “evolved away” in vocational services despite 30 years of job placement success of people previously considered unemployable. Serious change will require (yes, require, as in limiting choice) phasing out common practices of today, including sub-minimum wage, facility-services, group employment models, congregate housing, institutionalization, and other obsolete models. 
I think muting criticism of facility-based services is exactly the wrong thing to do, painful as it is to hear. We don’t have to belittle agencies or the people who work there. They work hard and are dedicated to their jobs. But we must continue to forcefully speak out against the continued needless segregation of those with disabilities. Too many people verbalize how they are “pro-inclusion,” but then they do nothing to act on segregated programs and practices within their own agencies.  
It’s not enough, for example, to say you want “Employment First,” without also pointing out the workshops must eventually close. Social change also does require demonstrating a better path and not just griping about what’s wrong. But it also must include criticizing ineffective practices that are not working to evolve, and speaking out for justice when it isn’t given. Let’s stop wasting people’s lives now, while waiting for some future fantasy evolution to come. Make change happen today.

Attention Workshops: The ADA Integration Mandate Applies to You

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.

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

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
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

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

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. 

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

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.

A Bellwether? Oregon Sued for Reliance on Sheltered Workshops

Last month, UCP Oregon/SW Washington, with the help of Disability Rights Oregon, filed a class action lawsuit challenging Oregon’s failure to provide supported employment services to more than 2,300 of its residents who are segregated in sheltered workshops. The suit says people are “stuck in long-term, dead-end facilities that offer virtually no interaction with non-disabled peers, that do not provide any real pathway to integrated employment and that provide compensation that is well below minimum wage.” 

Readers of this blog know that being stuck in a sheltered workshop is one of the core problems I believe face individuals with developmental disabilities today. One of the plaintiffs, Paula Lane, earned about 40 cents per hour in March, 2010, working on various benchwork tasks. Lane has repeatedly asked for a real job, according to the suit. She “cannot afford to participate in …many community activities.”

This is indeed a case to keep an eye on. It’s the first statewide class action suit against segregated work facilities. Sheltered workshops are not only obsolete, their cost-effectiveness is less than supported employment, and they have been found to actually hinder realizing job outcomes for people with disabilities. The case against continuing to segregate people with disabilities needlessly in day facilities is very strong, and includes not only research outcomes, but violations of civil rights and wasteful spending of government dollars.

Yet sheltered workshops are an entrenched part of the disability industrial complex. Over a half million people are attending them in the US, and states segregate more people every day. The real challenge should be to focus on “how” to change this system rather than “whether.”

Unfortunately, many people, families and professionals among them, believe that some people “need” to be in such a facility. I don’t agree, but I do understand where this perspective comes from. For example, one family posted in response to the lawsuit: “Yes the clients are largely segregated from non-disabled situations where they could not endure ‘normal’ work situations… clients are protected from terrible violations they might endure on the streets or at home.”

Parents will naturally protect a son or daughter’s perceived vulnerability. But we also need to understand that there is no evidence that workers with disabilities are more at risk than those in workshops, and funding facilities to provide needless “safety” comes at a cost – it has been proven to be ineffective for jobs and wages, and it is systematically preventing lots of people from living more meaningful lives. Changing a perception of the need for a segregated building (and thus “protection” from your own community!) is challenging. Workshops are not self-sustaining. They require ongoing tax dollars and the attendance of people with disabilities. Their existence requires people to be there. Money spent on facilities means less money spent on job development and job support for everyone.

Some people defend the segregated system because of the caring people who work at the facilities. For instance, this family noted: “…clients at the sheltered workshop have caring supervision and friendship of workshop staff. Our daughter views her supervisors as loved mentors.” Of course. This happens in some institutions as well. Many years ago I ran an agency with a workshop, and the staff were fabulous. That’s not the point. People are not placed in workshops to be near non-disabled staff mentors who are kind. It’s not that staff aren’t caring, it’s the environment into which we are putting both staff and people, and what we are requiring them to do, and what it actually keeps people with disabilities from achieving.

Moving people out of a system that is currently expanding will require thoughtful planning. Again, we should transition from “whether or not” and start a conversation about “how” right now. Here are six principles to start that discussion:

  1. Freeze new segregated workshop placements. We need to stop growing the problem. 
  2. Set up a “Workshop Firewall” rule to prevent re-entry into a sheltered facility once a person leaves. Too many people use the facility as a safety net, when actually it is a life trap. 
  3. Phase out, using a reasonable timeline, sub-minimum wages. Such wages are based on an outdated and inadequate idea of productivity and job customization. 
  4. Develop a capacity-building initiative in supported employment, both nationally and state-by-state. This would include better training, employment service staff professionalization, and an investment in school-to-work, career development services, and agency collaboration. 
  5. Launch marketing and education efforts to high-priority audiences such as families and employers.
  6. Set national standards requiring each state to collect and report clear service and outcome data on employment supports.   

This is just a beginning outline, but I think you see where I am going. States such as Vermont no longer fund sheltered workshops, so we know others can successfully move in this direction. So keep on eye on Oregon. A lawsuit in one state can start an avalanche across the US and Canada – and one that’s long overdue…