Category segregation

employment first segregation sheltered workshops

A Candid Conversation on Disability Issues

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Recently, for a podcast sponsored by Griffin-Hammis Associates, Cary Griffin and I had a discussion about many facets of our service system. We talked about the resistance to change of sheltered work agencies, the needless persistence of sub-minimum wage, concerns we had about generalized employment training programs being developed for people with autism, flawed social enterprises, and other issues in the employment of people with disabilities. We also talked about what makes us optimistic and where successes with community integration were being found.

I’ve known Cary Griffin for over twenty plus years. He has been an extraordinary consultant and trainer in the disability field, and I have always considered him someone I could bounce ideas off of and get an honest answer. 

Sound interesting? Well, personally, I enjoyed it and found that it helped me clarify some things I feel strongly about. Rather than making some of the same points here, you can get the transcript of the conversation at http://trn-store.com/.
I think it’s an authentic discussion that touches on a lot of things, of which I’m sure some people will have disagreements. But certainly, the disability field is in need to air differing views of the status quo. Why? For starters, we spend an awful lot of taxpayer dollars on services for people with disabilities that, by and large, have had a history of pretty ineffectual, and sometimes alarming outcomes. And we are still labeling people, only now in new ways.

As always, we invite respectful comments – I look forward to reading your reactions.

Have a wonderful holiday season, everyone, and, (wherever you do it!) thanks for all that you do.

conversion segregation segregation supported employment sheltered workshops

The 80-20 Rule and A Call to Freeze Referrals to Sheltered Work

daledileo 4 Comment

The Pareto Principle is a well known economic theory that can be applied to a lot of situations. It goes something like this: about 80% of effectiveness is driven by just 20% of our activity. This distribution has also been found to relate to how a small number of people control 80% of the wealth. Or in business, how 80% of your income comes from just 20% of your customers. (Interestingly, some theories also note how 80% of your life’s problems comes from just 20% of those people you know…)
Whatever the actual percentages per situation, the 80-20 rule is fascinating in what it implies – that often we are involved with things that seem related to our goals, but are really not very significant to achieving them, and in fact can become distractions. We thus confuse being busy with accomplishment. But the Pareto Principle says that unless you are getting the right things done, your ‘busyness’ is just an illusion of progress. It’s the difference between a shotgun that scatters its impact with laser surgery that focuses it where it needs to be.
Let’s apply this to the continuing problem of segregation of people with disabilities. If we consider how little progress we have made with employment rates of people with disabilities, and how few segregated facilities have closed, one should wonder why this is. After all, we have had multi-million dollar system change grants, along with multitudes of conferences, research studies, and training over the years. We have definitely been busy. We’ve had lots of meetings, white papers, and hand-wringing on employment rates.
One problem as I see it is that within all these initiatives, we have not focused on the few that might matter at a systems level. For example, we invest money and time and then teach and promote a myriad of new and creative employment strategies that are applied for far too few people. It’s great to know creative ways to find a vocation; we do need this kind of information. But it’s now been over 30 years since the dawn of supported employment; I think we have enough of what we need by now to get going. Sure, things will progress and we will learn better ways of doing things. But this is like ignoring a burning building to repair the front steps. It’s long past time to prioritize!
I would propose that if you want people to eventually be employed and not spend their days in a segregated facility, you need a basic and realistic policy starting place. That is, you have to stop letting people now entering the adult service system to even gain entry into sheltered workshop services. Simply stop the workshop referrals now, and you at least “freeze” the magnitude of a problem that every day grows larger. 
This is of course just a simplistic step, and no real comprehensive solution, but it is the initial necessary baseline for change. It will take years to completely phase out workshops, and there will be real political and social battles along the way. Like deinstitutionalization, people will complain about losing a service option, albeit one shown ineffective and potentially exploitive. But at least the problem won’t get worse than it already is and thus more difficult. And we won’t be unnecessarily sentencing young people to lifelong segregation needlessly while we spend precious resources on facilities and their related expenses.
Are there other steps within the Pareto Principle that apply? I think there are at least two more as starters. One would be an extension of the non-admission policy toward people who leave the workshop for employment. In other words, if they lose their job, they cannot return to the workshop. And still another would be the phasing out of sub-minimum wage. I will blog further about these in my coming posts and talk more about how to phase out facilities. 
Taken together, we might find that prioritizing our strategies for change might make more sense than continuing a shotgun approach of just promoting everything that seems a bit better than a workshop, then hoping for the best. I’m afraid the evidence has come in on that approach, and it hasn’t worked. 
conversion segregation sheltered workshops

Discarding An Old Narrative: Shine a Light on Indignity

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Some 30 years ago, some new and innovative approaches were developed to help people with disabilities lead better lives. They involved ideas such as normalization, social inclusion, individualized planning, and supported employment and supported living. These concepts were all based on focusing on the individual and not the disability, and each brought new ways of providing support. As the techniques evolved, they got more efficient, and researchers started to document their effectiveness. Their results showed that the outcomes they produced were much better for people – more wages, good jobs, nice homes, and more friends, and they cost no more when implemented properly.
Fast forward to today. A cadre of professionals, but still a minority to be sure, remain committed to implementing these no-longer “new” ideas. Nearly everyone now knows the terms and supports their philosophy. But the talk and the walk are very different. By and large, most services remain stuck in the 1980s. I can walk into almost any community and find most adults with developmental disabilities living in group homes or even larger settings, attending workshops or day programs, and living lives of isolation. Few have jobs or a real home to call their own. Many earn less than minimum wage, if they work at all. We celebrate the minority who have achieved a better life, but too often selectively ignore the large majority who have not.
Occasionally, we do hear in the media about the incidents of institutional abuse, negligence, or workers earning pennies per hour while agency management make six-figure incomes. These cause outrage, and the response is usually to clean up the situation. We then try to tinker with a model that seems by its nature to invite this type of problem. This leads to statements like “our workshop is not like those dirty sweatshops, it’s clean,” or “we have 24-hour video surveillance in the residence..” Hmmm… 
But when are we going to examine the model in its full details? What we don’t hear can be just as disturbing: the adults who sit coloring because the “clean workshop” has little work; or the resident who sits on the couch because the staff just wants to watch TV. These are not headline events, but they are a slow drip of negligence because we know how to do better. I have come upon these kind of things far too often and too recent, and this type of living is unnecessary for anyone.
We are caught in an old narrative. It goes like this: People with disabilities need special places and special programs. They prefer each other’s company. They are too vulnerable to live in the community and are not really productive to be employable. This narrative was codified into law, and policy focused on building specialized facilities. Programs were developed and people were placed into them, based on their label and perceived functioning level. Professionals were trained, many times by entering the system as a staff person, and then learning by watching “how things work here.”
Discarding such a narrative and what it produced isn’t easy – it takes work. First, you have to produce an approach that is doable and based on evidence that it works. This we have done. But then you have to help people to understand the new narrative rationally, emotionally, and philosophically. Then -and this is the deepest challenge – you have to break down the existing codes, restructure the policies, and retrain the professionals, or hire new ones. This involves resetting expectations, and accepting that what we have, even though it’s better than nothing or something even more restrictive, isn’t good enough. The new narrative threatens the old and the economics it produces. Even if research says changing services is by far the better thing to do, people tend to discard or discount information that just doesn’t fit the narrative they have – a well-studied effect called the confirmation bias.
So, there are at least two basic things we must accomplish to change things:
1. Expose the flaws in the old narrative.
2. Continue to present a compelling new narrative.
So far, advocates have only been doing the second option. I’ve been told directly, it’s too disruptive to rock the boat right now. Too disruptive for whom? In my view, not rocking the boat has kept us from enabling any systemic change. Civil rights didn’t come just from talking about a new world of equality. Advocates also had to expose the indignities, inequality, and pervasive inhumanity that was going on every day, in everyday neighborhoods. It was sometimes blatant, and sometimes subtle, but always just as wrong. I welcome your comments.
employability school to work segregation social enterprise

Engineered Employment: An Inadequate Solution for Adult Joblessness and Student Transition

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Dale, come see our great recycling program! Check out our cleaning crew! We run a bakery that our special ed students all work at!

Over the past 30 plus years of providing consultation and training to agencies and schools on the employment of people with disabilities, I have visited employment programs in 49 states and evaluated many program “models.” Most of these revolved around one idea to solve unemployment in that region. This idea was usually based on a single business model – selling muffins, recycling trash (seen hundreds of these!), manufacturing something, producing crafts, running a cleaning business, and the like.

Generally, the agencies are quite proud of their progressiveness. They point out that people are doing real work for real wages. Some businesses even make money (although rare, and usually only because of subsidies). The even have progressive sounding terms for this – affirmative business, social entrepreneurism, or social enterprise. Labeling things to dress them up is something we are good at in disability services.

And, compared to a sheltered workshop or “day treatment,” these kind of engineered employment solutions look good on the surface. But they are deeply flawed on many levels.

When I was the executive director of an agency in the 1980s, I inherited a program that was a functioning restaurant. It purportedly prepared people to go into the food service field. Folks came from all over to tour the facilities and view our “innovative program.” However, my experience with the program was:
1. Only a few people we served were really interested in restaurant work. Fewer got sustainable jobs after their training.
2. The business demanded an enormous amount of our staff time and resources.
3. The local restaurants we were purporting to provide trained labor to also perceived the restaurant as subsidized competition, and rightly so.

Ultimately, I concluded it was mostly a major distraction from our mission of making good matches between all of our workers and businesses or market needs. I decided that if we were going to be involved in business start-ups, it would be those business models that come from the interests of people we served, who would own them themselves with our help. For the few people who wanted restaurant training, we would work with the community college to obtain culinary education or create training opportunities in the existing restaurants in our area.

Ultimately, I found that you have to solve unemployment using a method that was driven by job seeker skills and interests first, then building networks out to the local community to serve it. Engineered businesses wrongly use the reverse approach. They start with a business, presume most everyone they serve will be good at and enjoy the work, and then often compete with the very companies they then try to place people in, when outside placement is even a goal. In many, lifelong employment by people with disabilities is expected there. And so much energy is taken with making the business viable, there is little time left for considering what else people might be better off doing!

Imposing group employment on people to solve their lack of jobs is a generally poor strategy. Running agency-owned businesses distracts your focus on serving the needs of the labor market and focusing on individuals. It restricts employment to only those jobs you have managed to engineer – and too often these are stereotypical jobs like cleaning and recycling garbage. People with disabilities deserve better and broader options. We should not get caught up in our own ideas and models.

A recent example of this came to light in British Columbia, where students with disabilities were seen rummaging through garbage cans at school, in front of their non-disabled peers, to recycle as part of their “transition training.” It illustrates my point. See the article.

The only recent analysis on social enterprise I found was a 2007 field review by the Seedco Policy Center. They concluded: “…we found that non-profits driven to meet a ‘double bottom’ line for customers and clients have far more typically led to frustration and failure, drawing attention and resources away from the organization’s core work — and that even the oft-cited success stories are less cut-and-dried than they appear.” They found a large ultimate failure rate, and noted that non-profits, unlike real businesses, had much more difficulty “letting go.”

I know not all engineered models look like this Vancouver example. And in some low employment regions, engineered employment will look enticing. Many agencies work hard to develop these engineered jobs, and I think these programs are well-meaning. But that doesn’t mean they are a cost-effective use of our government resources. They still involve congregation of people with disabilities, limited choice, and a movement of time and funding away from your prime mission.

Thanks for reading. Feel free to post your comments! The link is below – 

minimum wage segregation

A Turkey Farm Lesson about Group Labor and Sub-Minimum Wage

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Not only is sub-minimum wages for workers with disabilities unfair, one of the effects of such wages and using group labor of people with disabilities is the dehumanizing impact it creates on the workers by those around them. I believe this leads to a higher risk of abuse and exploitation.
In April, 2011, the U.S. Equal Employment Opportunity Commission filed a lawsuit against Texas-based Hill Country Farms, alleging that the company subjected a group of 31 men with intellectual disabilities in Iowa  to severe abuse and discrimination for more than 21 years. The men, whose job was to eviscerate turkeys, were subjected to physical abuse and inhumane working and living conditions. The physical abuse including hitting and kicking the men and forcing them to carry heavy weights as punishment. They were also verbally abused and called ‘retarded’ and ‘dumbass.’ If this rings familiar to recent human rights violations at some institutions, you are right. Institutional life is not just about the size of the program, although larger programs tend to be more regimented; it’s also very much about the relationship between group residents and those around them.
The EEOC complaint alleges that that the owners and staffers of Henry’s Turkey denied the workers lawful wages, paying them only $65 a month for full-time work; restricted their freedom of movement; and forced them to live in deplorable and sub-standard living conditions. Documents were ‘contrived’ so that employees would be paid their monthly $65 regardless of hours worked.
This is clearly a case of incredible abuse and exploitation, and is shocking in its level for today’s world. How could such a thing happen? What hasn’t been widely reported is the history behind the development of this situation and some details of the residents living conditions in Iowa. The original owner of the company, T.H. Johnson, was a rancher in Texas. He started a turkey operation there and began using graduating students of the Abilene State School, which was then an institution for students with disabilities, as low-cost laborers in the sixties. In 1968, he was even award “National Employer of the Year” by the “National Association of Retarded Children.” In the early seventies, the company made an agreement with a turkey plant in Iowa to provide labor. A bunkhouse was used as the resident for the first 15 laborers with disabilities brought to Iowa from Texas. This number fluctuated between 20 and 60, but soon settled at about 30 residents with intellectual disabilities. It wasn’t until a 2009 inspection of the residents’ bunkhouse when conditions came to light. The inspection cited the main fire alarm disabled, fire exits blocked or padlocked, holes in the ceiling, bug infestations, mold – generally deplorable conditions. 
The idea of workers with disabilities as low-cost laborers stems from group employment models and the allowance of sub-minimum wage as applied to a group of people – those with disabilities. Certainly exploitation and abuse can happen anywhere, but something of this magnitude is rare. Group labor approaches and the ability to manipulate wages based on “productivity” simply invites an atmosphere where people can be taken advantage of in ways we have not seen in the US in fifty plus years. There is no reason to allow sub-minimum wages anymore; or group models of employment to solve high unemployment of a particular minority group. 
Let’s end the conditions that led to a run-down bunkhouse for workers who earn a $65 monthly wage for full time work. Now. 
segregation sheltered workshops

Why I Resigned from The Alliance for Full Participation

daledileo 11 Comment
We often compromise in the interest of a final goal – in life and politics you must – but in this instance, well, it was just way over the line for me. For many years now, I have been a strong advocate for ending the segregation of people with disabilities in education, community living, and employment. Despite numerous advances in technology and support strategies, the disability system remains largely segregated and resistant to change.
Last year, I was invited to participate on an Advisory Board for the Alliance for Full Participation (AFP). The AFP is composed of fifteen organizations. The goal of the Alliance states: “adult service providers must work to remove barriers and support individuals in real jobs for real pay” – something I believe in. In my first meeting with the AFP Advisory Board, we recommended that a clear national goal be set, rather than vague wording of “increasing” employment opportunities. This resulted in a revised AFP goal of doubling the employment rate for people with developmental disabilities by 2015.
However, very shortly, an issue arose that tested the AFP’s commitment to its goals. In a December 9, 2010 memo to the Obama Administration from several national agencies (those in bold are AFP members: ACCSES, Easter Seals, Goodwill Industries® International, NISH, The Arc of the United States, and United Cerebral Palsy), several positions were put forth regarding pre-vocational services. The memo lists 13 guiding value statements. 11 of these statements were very supportive of integrated employment. However two of them were very inconsistent:
Value 10: While a priority should exist for competitive, integrated employment, it should be recognized that other valid service outcomes may occur, including paid work in center-based program settings, in accordance with the Fair Labor Standards Act, self-employment, and volunteer (unpaid) work.
Value 12: …Prevocational services provided to individuals may assist them in reaching their optimal level of functioning…
A state should never subject an individual to arbitrary time limits regarding the provision of prevocational services, such as time limits based on the site or location of the prevocational services or by substituting part-time services for full-time services when full-time services are considered necessary and appropriate by the IDT.
There are several problems here. First, if you are committed to changing your services to integrated employment, then sheltered work should NOT be a valid service outcome. Tolerating a two sided service model (center-based training and integrated supports, which are contradictory at their core) is the main issue why segregated services are not declining. In addition, the value noted above in the memo that states that using pre-vocational services to prepare for some “optimal level of functioning” has not a shred of evidence to support it, and in effect the long history and the counter experience of supported employment shows it is a complete waste of time and money. The memo instead states that:
…prevocational services may be “provided in a center-based or other community based program setting to persons who are not expected to join the general work force or participate in a transitional sheltered workshop within one year of service initiation… If compensated, individuals are paid at less than 50 percent of the minimum wage… Services include activities that are not primarily directed at teaching job-specific skills but at underlying habilitative goals (e.g., attention span, motor skills).”
Wrong. To achieve full participation, disability services needs to get rid of segregated, pre-vocational readiness training, period. We also need to end subminimum wages, which are exploiting the work of people with disabilities. Finally, the recommendation to continue to provide pre-vocational training without a time limit has brought us to a national disgrace in which far too many individuals with disabilities have life-long segregation and never experience community employment.
So, we have a situation where some members of an Alliance dedicated to integrated work are advocating goals contrary to mission of the Alliance. After a long discussion by the Advisory group, we recommended that that the Alliance Board request that the three agencies clarify why they have advocated for center-based and pre-vocational employment, given their commitment to the Alliance for Full Participation. A public discourse of this issue is sorely needed. However, the response sent back to the Advisory Board is excerpted below:
Individual AFP organizations, organizational representatives, and advisory committee members should communicate any concerns about positions and actions of individual member organizations to the organizations themselves… AFP’s Board recognizes that each organization, while supporting AFP’s vision and mission, must also support its individual agenda and constituencies, which may lead to inconsistencies… AFP wants to avoid being drawn into a conflict that would put a focus on negative action, rather than the positive focus of its goal.
My resignation immediately followed. Being drawn into a rational discourse of where we disagree is exactly where we need to be. Nearly all agencies have inconsistencies in their current services and goals for the future, and of course these are not limited to AFP members. But the position taken here by some AFP members aren’t minor inconsistencies. Nor are they just inconsistent services during a process of agency change, which would be understandable. They are positions strongly advocated to federal policymakers and diametrically opposed to the stated values and reason of the Alliance. It’s one thing to tolerate inconsistencies as an agency moves toward a goal as part of a change process; quite another for an Alliance member to directly advocate a contradictory goal in a major policy memo to the Obama administration. I don’t believe you can just ignore it.
Focusing just on what you want cannot mean ignoring what you don’t want, especially when 30 years have taught us that our system change in disability services has not occurred by just trying to focus on integrated employment. Indeed, civil rights was not just about promoting integration; it was about calling attention to the unjustness of segregation. There is no difference in the disability movement. There is value in “keeping people at the table,” but not if they remain intransigent over evolving their services. Remember, we are talking about real people left in centers doing meaningless things with no time limits. Real people.
Despite my seemingly intractable position here, I am not advocating a strident message, nor a disrespectful one – just the truth told calmly. You cannot promote segregated, pre-vocational, non-time-limited training facilities and at the same time stand for full participation. While recognizing an alliance of organizations is a precarious and potentially useful thing, it is of little value and limited credibility if it ignores its members advocating opposing concepts. When the AFP decided to turn away an opportunity for such discussion, it might as well have become an Alliance of Sometimes Participation.
The AFP has an opportunity to frame a discussion, but the goal cannot just be to articulate a vision of integration. After almost 30 years of articulating integration, does anyone really believe what the field just needs is more education about it? There is a real urgency here. The longer hypocrisy is shielded, the longer the goal of Full Participation will take. If this is the leading edge for change, it is no wonder we get nowhere – there is just no energy in it. There are plenty of reasonable steps that can occur – highlighting the debate on the web, at the upcoming AFP summit, etc. Instead, the issue has been ditched. On the plus side, this has crystallized the problem quite clearly.
I write this on Martin Luther King Day, who said:
“In the end, we will remember not the words of our enemies, but the silence of our friends.” Friends, I hope we will not again just stand silent.
choice conversion segregation sheltered workshops

The Fallacy of the “Choice Argument”: Most People in Sheltered Workshops Want a Job

daledileo 4 Comment

Despite numerouse national and state policies promoting integrated employment, 76% of adults with intellectual or developmental disabilities are served in facility-based, segregated programs – usually work activity centers or sheltered workshops. Whenever advocates talk about closing a sheltered workshop so the people there can get real jobs, the argument of choice is raised. “But this is where they want to be…” You are taking away their right to chose…”

In a recent article published in the Journal of Vocational Rehabilitation, authors Migliore, Mank, Grossi and Rogan look at whether or not this gap between policy and practice is in part due to the lack of interest of adults with intellectual disabilities and their families for employment outside facility-based programs.

The authors surveyed 210 adults with intellectual disabilities in 19 sheltered workshops, their respective families or caregivers, and staff members in these workshops. They found that 74% of adults with intellectual disabilities, 67% of families, and 66% of staff felt those they serve would prefer employment outside workshops, or at least consider it as an option. The majority of all groups believed that adults with intellectual disabilities can perform outside workshops if support is made available.

The study highlighted the fact that the preference for employment outside of workshops is not associated with the severity of the disability. So, who is restricting choice? Perhaps it is those who insist that employment service dollars be spent on an obsolete model.

Source: Migliore, A., Mank, D., Grossi, T., and Rogan, P. (2007). Integrated employment or sheltered workshops: Preferences of adults with intellectual disabilities, their families, and staff. Journal of Vocational Rehabilitation Vol. 26, No. 1, pp. 5–19.

productivity segregation sheltered workshops

The Fallacy of Low Productivity: Why People with Disabilities Are Relegated to Segregated Facilities at Low Wages

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In a recent class I was facilitating, I again ran into the argument from someone that people with disabilities need sheltered workshops because they are not productive enough to be in the business world. Aside from the moral issue of segregating a whole class of people, let us address this stereotype of non-productiveness.

There is no doubt that some individuals with disabilities are slower in certain tasks, depending on the task and the disability. Of course this statement is also generally true of all people, depending on the task and the skill. The thing about productivity in a sheltered workshop is that it is largely confined to a limited scope of work, typically packaging, assembly, shipping, or some other rather repetitive task. If you happen to be slow on these type of tasks, or make too many mistakes, then you will be judged as not ready for prime time – a real job. The answer by the disability professional is typically then to provide training – year after year after year…

But this is inherently unfair. Productivity is largely related to the match of skill and task, but it is also related to motivation, the sense of belonging, wages, social relationships. self esteem, the assistance and training you get, and other factors.

Alberto might earn pennies a day for his slow pace assembling a business mailing, but at a health club where he welcomes customers and checks their membership cards, he might be at 100% for the employer. That is, with a little help, he does the job he is asked. He likes the work, the people, and it makes him feel good. He also has the supports he needs to succeed. Thus, he is motivated. And, he is good at what the employer needs.

This is productivity. A role for the disability professional, then, is not to pass judgment on who is productive to earn the right to a job, based on pretty invalid information. It is to figure out what the person needs to do and to have to be productive. It means finding the right job match and giving the right supports. Productivity isn’t fixed. Nor is the setting in which it is assessed.

choice segregation sheltered workshops

Does Inclusion Restrict Choice? Or Does It Offer More?

daledileo 1 Comment

I recently received an interesting letter from a gentleman with a disability who states the he feels “very at home among the handicapped.” He wonders why I have such a stress on inclusion. Is that not “cutting off an option?” – that of being with others who also have a disability?

A fair question. I think this notion of inclusion (meaning you are taking my choice to be with other people with disabilities) is a common misperception. Integration for any minority should not eliminate the right for that minority to decide to come together – to live, recreate, socialize, marry, share, or for political advocacy. It isn’t only one way or the other.

What I am opposed to is the forced segregation of people with disabilities. (I realize “forced” is a strong word. People can of course choose to not do anything. But generally, if you want to have an education, a job, or a place to live, your options are forced into segregated ones.)

When confronted, segregation proponents usually offer a defense that boils down to several components, one of which is, well, they like their “own kind.” I remember hearing this argument used to explain why black Americans were made to go to separate schools, or ride in the back of the bus. “They like being together.” Of course people are drawn to others who share a commonality – and that can certainly include having a disability. But that is a sad excuse for restricting equal access.

Civil rights means a level playing field and the absence of imposed segregation. It also means you have more choices and diversity about where you work, whom you socialize with, or who will be your classmate.

Let’s just take the work domain. Right now, if you want to work and you happen to have a disability, for 90% of the population with severe developmental disabilities, that means a sheltered workshop. A place where only other people with developmental disabilities will be. A job match should be about several things, including your interests, skills, and where you can be most productive. A workshop provides none of this –

So does inclusion cut off an option? On the contrary, I believe it opens them up.