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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

daledileo 3 Comment

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.
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.