Perpetual Planning Syndrome: Don’t Confuse the Plan with the Action

How often do we see it when we look back at our work year? Task forces created, planning groups assigned, attending meeting after meeting, writing goals and objectives, action plans, giving assignments, and then… and then… We look back, and then look around, and we notice that things are not really that different. It’s the Perpetual Planning Syndrome.

Planning, with all its complexities, still has one purpose. And that is to make the things we DO – the actions we take – for ourselves, our agencies, and others, more efficient, effective and meaningful. That’s because haphazard actions to try to change or create new services can lead to unintentional outcomes that can be wasteful or even harmful.

In fact, the greater the complexity of the action, and the more significant its impact, the more thoughtful planning is needed. For example, transforming an agency from a facility-based model to a customized community-based approach requires thought and sensitivity. You should have clear strategies for engaging stakeholders, stabilizing funding, building your service capacity, and downsizing your reliance on a facility. But should a clear plan take endless meetings and years to accomplish? Not at all.

You don’t need to define every aspect of every possible situation to evolve a service. And a main reason is that each step taken toward your goal will lead to new information. In addition, you will likely experience new and different circumstances than what you anticipated. The longer the timeline goes out, the less valid will be the strategies you are making plans for now.

To start, always have a clear idea of what your ideal end point will look like – this is important so that you just don’t keep chasing new ideas because it’s the latest hot idea. Know your vision then figure out what initial steps you need to take within the first 6 to 12 months that will get you committed to the real innovation and change that meets your mission. Once you accomplish these, review your end goal to be sure it looks the same, and then figure out where you need to go next, based on what you learned and where you are now. Get some advice from people outside your frame of reference, who can dispassionately tell you what is working and what isn’t.

By the same token, this is true on an individual level. For example, if career planning and the Discovery Process does not lead to a quality job for someone, then all the strategizing has been besides the point. Don’t confuse the goal for the tools you use to help get you there. Doing Discovery is not a goal. You are no closer to a job with a Career Plan, unless it is actually used to find a good job match.

The goal is a job, not a plan. Or, for an agency, the goal are people in good jobs and not workshops. Making a plan does not get you started; it’s only a preliminary road map. What gets you started are taking the actions you’ve thought about and then making successful outcomes. Time is important. Many people with disabilities have spent lifetimes without opportunities to experience life in the way most of us take for granted. Excessive planning wastes time, and lives are wasted while professionals meet.

Yes, a road map is useful to get you to where you want to go efficiently, but it’s taking the actual steps that count.

The Two Sides of the Employment First Coin

Like a two-sided coin, the advocacy movement of Employment First has two core linked components. 
The first side is about ending obsolete practices – to phase out the needless segregation, less-than-minimum wages, and limited work tasks given to people with disabilities that make up much of sheltered work. 
The second side is to provide a system that supports, for every individual with a disability, a preference for quality employment services that are individualized. These are services that lead to well-matched jobs to enhance productivity, social success, and wages in community integrated businesses.
The success of both goals are interdependent. Moving people with disabilities out of sheltered workshops does not achieve the goal of a quality life if, after leaving, they remain excluded from typical community life, and instead sit home doing nothing, or be relegated to day programs focusing on non-vocational activities, or fail in poorly-matched and weakly-supported jobs.
And this is what might happen if states close workshops without investing in supported employment services. If states just maintain their supported employment for the small percentage of people receiving those services (about 22% nationally in the US), this will only perpetuate a serious bottleneck to employment people with significant disabilities have faced for the last 30 years. New services must be expanded or incubated to be able to serve more people. 
In addition, the level of quality of such services varies widely from place to place. Far too few agencies are well versed in marketing planning, job analysis and customization, or naturally sustainable job support strategies. A commitment to cutting edge service is a needed investment.
But, as well, ending a segregated approach with demonstrably poor outcomes must be part of the discussion of what needs to change. We cannot just ignore this half of the goal. Many of the large disability service agencies take the position that segregated facilities will just “fade away on their own” (to quote one such position paper) once better employment services are offered. But that is overly simplistic and has proven untrue over time. It will take proactive steps to end the current reliance on sheltered employment as a solution to work for people with disabilities.
If we consider both sides of Employment First, then we must acknowledge three basic conclusions. 
  1. First, change won’t occur until we freeze referrals to sheltered workshops, as is finally now being done in several states. Then there must be an active process to downsize the census over time.
  2. Two, offering quality employment services to many more people requires a large investment in capacity-building. This includes not only core basic training for the new staff that must be hired, but also in-service development to greatly increase the quality of career planning, job development, and job support. Many agencies still only provide rudimentary levels of these skill sets.
  3. And, finally, if established agencies are to successful change their missions and services, they must have access to technical assistance on organizational restructuring. Agency conversion can be complex and fraught with land mines, from family resistance, management restructuring, and the changing of agency mission and staff organization. Agencies taking this leap must be offered support, guidance and the resources necessary for them to succeed.

Sheltered Work Phasing Out in Rhode Island; Will Your State Host the Next Olmstead Investigation?

This week, the US Department of Justice (DOJ) reached a landmark settlement based on the conclusion that the state of RI and the city of Providence failed to provide services to individuals with developmental disabilities in the most integrated setting, and were putting students in a school transition program at risk of unnecessary segregation in sheltered workshop and day program settings. Earlier this year, DOJ had investigated the state for violating the Olmstead decision of the Supreme Court through its day activity services system. They focused on Training Through Placement (TTP), a North Providence agency that had a sheltered workshop with transitioning students from the Birch Vocational Program and other schools.

Under the settlement, individuals in Birch and the TTP workshops will now receive supported employment and integrated day services sufficient to support 40 hours per week. It is expected people will work an average of 20 hours a week and receive competitive wages. According to the agreement, supported employment placements cannot be in sheltered workshops, group enclaves, mobile work crews, time-limited work experiences (internships), or other facility-based day programs.

The 29-page agreement is quite comprehensive, and follows on the heels of another DOJ intervention regarding sheltered workshops in Oregon (see The Good, Bad and Ugly). This now marks two separate states that within the last six months have been pushed, under the Olmstead decision, into finally taking action against their long-standing policies of primarily funding sheltered workshops for day services. Clearly, the issue of day service segregation is finally moving from “wait and see” to civil rights enforcement. 

Let’s look at the Rhode Island situation further. TTP workers with disabilities made an average $1.57 per hour, with one person making as little as 14 cents per hour. The investigation also found that Birch students were generally denied diplomas. Most were paid between 50 cents and $2 per hour, or were not paid at all, regardless of productivity. DOJ noted that the Birch program had been in existence for 25 years, and was a “direct pipeline” for cheap labor for TTP, which had contracts with local companies. The jobs were mostly typical of sheltered workshops, assembling jewelry, bagging, labeling and collating.

Effective March 31, 2014, the State will no longer provide placement or funding for any sheltered workshop or segregated day activity services at TTP. Further, last March, Rhode Island embraced an Employment First policy. Under the new policy, new participants in the state system that provides employment and other daytime services to 3,600 people with developmental disabilities will no longer be placed in sheltered workshops. The sheltered workshops should be completely phased out within the next two to three years.

The next question that should come to mind, if you are running or funding a program in a state chock full of workshops, is “Am I next?” Readers of this blog can examine the case presented for moving away from sheltered employment in other posts here. I also have had this discussion with some of the US DOJ attorneys. It’s time to expand the Employment First movement so that we away from sub-minimum wage, segregation, and limited work options, based on an obsolete model that can leave people open to exploitation. People with disabilities deserve better in every state. Employment First should not just be rhetoric. Take a leadership role now; there is no reason to wait for a lawsuit…

The Good, Bad and Ugly: Trying to End Obsolete Sheltered Work in Oregon

The state of Oregon, like it or not, will have a spotlight shining on it as it plans the future of employment services for people with intellectual/developmental disabilities (ID/DD). Like most states, Oregon spends the large majority of its employment service dollars ($30 million a year) for individuals with disabilities to be in sheltered workshops. In 2012, advocates filed a class action lawsuit challenging Oregon’s failure to provide supported employment services.

Last month, in a startling move, the US Department of Justice (DOJ) announced it had joined the lawsuit, stating, “We are seeking to represent the interests of Oregonians currently working in sheltered workshops and those who are at risk of being placed in sheltered workshops upon their graduation.”

The complaint gave many examples of how people are currently “working” in workshops, such as one where 150 people with disabilities hand sort trash and clean garbage bins, with some earning only 44 cents an hour. The complaint noted that these conditions have persisted for decades, despite repeated reports and plans calling for action for reform. Again, this type of work is not unique to Oregon, and can be found throughout the US.

State Data: The National Report on Employment
Services and Outcomes, ICI, UMass Boston

Also, nearly every state reports integrated employment as only a small part of their day services. A recent article from the Institute on Community Inclusion at UMass Boston concluded that less than one in five people nationally are provided supported employment services, and that “there has not been a meaningful change in the number of people with ID/DD in integrated employment since 2001.”

In response to the complaint and the weight of the DOJ joining, Oregon Governor Kitzhaber issued an Executive Order to stop funding work assessments in sheltered workshops in 2014, and to stop funding sheltered workshops for those coming out of school or not already in one.

The Good

Every service system serves more people each year, yet the percentage of people in the majority service, sheltered work, stays the same. In effect, the numbers of people entering segregated work grows larger than those entering integrated work. In other words, four times as many people enter sheltered work each year as integrated work, making the problem larger and more difficult with time.

The Oregon executive order effectively freezes new placements in sheltered workshops, ending their continued growth. In addition, by eliminating work assessments in workshops, the order acknowledges the work being done there has little to no validity for predicting vocational preference or competence for any individual.

The state also says it will establish and implement a policy that Employment Services shall be evidence-based and individualized. Over the next nine years, the state sets targets to provide job services to 2,000 individuals.

The Bad

The Order considers group employment of eight or less, including crews and enclaves (an antiquated definition of supported employment) to be “integrated employment settings.” Group employment models have serious issues, and are not considered best practices, nor are they individualized as the Order announces services should be. Treating group placements as successful vocational outcomes misses an important point.

The Ugly

Disability Rights Oregon (DRO) immediately noted the planning holes in the Order regarding the future of the workshops in the state. Although “a significant reduction over time of state support of sheltered work” is stated, DRO notes that it provides “no adequate or effective commitment to benchmarks, system outcomes, or re-allocating or re-distributing resources to provide individuals with disabilities access to employment services in integrated settings. In sum, the plan all but assures that the goals for delivering services to individuals in the community are advisory goals and not commitments.”

This means there is little realistic planning for the challenging process to transfer to real community jobs those workers already placed in segregated facilities earning sub-minimum wages. And, according to the benchmarks, probably only a third of those already placed there will have access to employment serves over the next decade. Systems change requires a stronger effort in moving people out of workshops, not just closing the door to get in. It’s like trying to end institutionalization by simply stopping intakes. That’s not really a process, it’s more just a waiting game, and gives up on the residents already there.

Although this Executive Order acknowledges the goal of increasing employment and decreasing segregated work, as the system continues to grow, in all likelihood, most workers still stuck in sheltered facilities will continue to have no other options during their lifetime.

Low Productivity: More of An Excuse than Obstacle to Real Work

Low productivity assumptions

Several issues reside in the heated discussions over the need to change the traditional day service model for people with disabilities. But the defining one relates to competing beliefs about productivity: 

Can individuals with the most significant disabilities be productive in the workplace, such that sub-minimum wage is unnecessary? 

Those in the individualized community employment sector, myself included, believe yes. We use a zero-exclusion model, reject sub-minimum wage (referred to as 14(c), its legislative shorthand), and no group employment. Looking at various US national databases, these efforts represent probably only about 15% of people with developmental disabilities receiving day services.

Those providers in the much larger majority, the traditional day service sector, utilize segregated work centers and sub-minimum wage, and often rely on group employment models such as enclaves or crews. Yet, the functional levels of those they serve do not appear different from those in individualized community employment.
It appears that the loudest argument against ending 14c sub-minimum wage has been that its removal will take away employment opportunities for those with the most severe challenges. For example, on this blog, commenters talk about how, without a workshop or sub-minimum wage, their son or daughter would be left with little to do. And professional lobbyists for agencies providing more traditional services make the same case. In a recent In These Times article, reporter Mike Elk noted that even leading congressional disability advocate Sen. Tom Harkin will not pursue ending sub-minimum wage, stating that he “has heard from a number of advocates for people with disabilities that eliminating the sub-minimum wage option without having a real plan to create sustainable employment alternatives would be detrimental to Americans with disabilities currently working in 14(c) settings.” 
In reality, there is a real plan that has been around for over 30 years. It’s called supported employment. And eliminating 14(c) does not completely reflect what advocates have actually proposed, which is eventually eliminating it by phasing it out. The article then notes a key source of the position of retaining sub-minimum wage was Harkin’s former top disability staffer who now works as a lobbyist for ACCSES, a coalition of providers. He is quoted as saying: 

  • “Would you hire somebody who is working at 30% and not meeting productivity goals?” 
  • “What if somebody is not capable with or without an accommodation of working at a regular job?  Should we force them into a rehabilitation program with no work or sit at home and watch TV?” 
  • “If you eliminated 14(c), you would lose the opportunity for these people to be trained to be employed.”
Examine these statements carefully. What does 30% productivity mean? Where did it come from? As demonstrated in a workshop? On what tasks? With what support? Is this rate set in stone? How reliable is this a predictor of job success in the community?

A number like that put on a person is damaging; it is just an arbitrary label like any other stereotype.

The assertion that removing sub-minimum wage will lead to job loss is not only unproven, but false. This is demonstrated by the many workers across the US with very challenging disabilities who are working at minimum wage or better, yet whose productivity ratings in traditional (segregated) work training settings were extremely low. It also sets up a false choice (i.e., low paid work or none at all). This kind of thinking is only true if you have a narrow (and I would argue obsolete) view of job placement, productivity, and what people are capable of.

Here is the missing piece: The best predictor of job success is not whether we can convince employers to let people work at lower standards for lower wages; it is how well we customize employment and provide job supports to meet productivity demands. It is inherently unfair to close perceived productivity gaps by reducing the wages of those who need money the most, especially when we have other proven tools to enhance productivity. 

Essentially, human service agencies have relied on sub-minimum wage as an entry tool to access jobs (or keep people “busy” in workshops) in situations that are probably not well-matched nor sufficiently supported or accommodated to enhance good productivity. While it might be somewhat understandable, given the pressure on providers to met job goals, it is a poor solution to the chronic history of unemployment of those with disabilities. With better training and using existing job customization tools, sub-minimum wage is not necessary.

The continuing use of sub-minimum wage is actually hindering our ability to promote and provide well-matched employment. It has become an obstacle, first because of its misuse (the ongoing documentation of many instances of low wage exploitation alone should cause it to end). And secondly, because it has caused providers to rely on a “low cost” plea for job placement, rather than investing in the real task of developing the skills job developers need to produce a more productive job situation.

There are likely many, who after reading this, will still not agree, thinking such job matches and supports such as I describe are unrealistic for most. Note that such customized employment is indeed already being accomplished in many places. In a future blog, I will to try to explain more about how to individualize jobs such that productivity can be reached to justify commensurate wages.

Productivity, at first glance, seems to be just a matter of how fast you do what is given to you. But dig deeper, and you see that is more about how well the worker is matched and supported to accomplish something needing to be done. And the answer on succeeding in that, though challenging, is up to the provider’s abilities at customizing, accommodating, carving, training, and more.

Lobbyists for day programs hanging on to sub-minimum wage as an answer for their belief about those “not capable of work” need to rethink the message they are giving. “He has 30% productivity” is no better than any other discriminatory disability stereotype, and it flies in the face of federal law where there is a presumption of employability. And it’s a damn shame that Senator Harkin has accepted it as fact.

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 [fusion_builder_container hundred_percent=”yes” overflow=”visible”][fusion_builder_row][fusion_builder_column type=”1_1″ background_position=”left top” background_color=”” border_size=”” border_color=”” border_style=”solid” spacing=”yes” background_image=”” background_repeat=”no-repeat” padding=”” margin_top=”0px” margin_bottom=”0px” class=”” id=”” animation_type=”” animation_speed=”0.3″ animation_direction=”left” hide_on_mobile=”no” center_content=”no” min_height=”none”][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

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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. 

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…