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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… 

Job Customization and the Babbage Principle: It’s Nothing New

Charles Babbage was an inventor who in the mid-1800s first came up with the idea of a programmable computer. His design actually worked when a museum finally assembled it in 1991. He also was accomplished in math and economics, and he described what is now called the Babbage principle, which focuses on the advantages of the division of labor. Babbage described how highly skilled workers, who are usually also more highly paid, often spend parts of their job doing tasks where their skills are not really needed. 

This means an employer is paying for a skill not being used some of the time. He noted that divided labor is more efficient, because you can then reduce production costs by better matching each workers’ skills with what needs to be done. 

This should sound familiar to employment professionals who do job carving or job customization. Many more workers with disabilities can be employed if employers would more specifically match what they need getting done to their labor pool. From the employer point of view, this would be a more efficient, cost-effective way of using labor. From the disability perspective, it should allow a broader range of opportunities for employment. 

But this approach is a radical departure from the way most businesses actually hire. More typically, employers look for job candidates with a broad skill set. And jobs are often defined as a fixed list of tasks for a position, forcing the worker to fit into all the perceived needed duties, regardless of skill, interests, or whether its the best use of his or her time, all done at one set salary level. And because this is the standard business model, it requires convincing employers about the benefits of customizing jobs to individual talents. This thus becomes a marketing challenge. 

Job customization using the Babbage Principle minimizes the need for job seekers with disabilities to compete with non-disabled workers who have a broader range of skills and experiences. Instead, candidates with disabilities are analyzed by their ability to get a task or sets of tasks done at a cost. And because they are pre-screened by disability employment providers (that is, if they have done career planning and “discovery” well), there is an added benefit. Again, job development and marketing must evolve to focus on this strength that disability employment providers can offer.

An important note – safeguards must be in place to ensure that workers with disabilities involved with job customization are not relegated to low-paying tasks only or placed in drudgery work. People with disabilities are often subject to mistaken perceptions, and the Babbage Principle could be misused to set up a new “class” of workers doing low-skill work at low pay just for business efficiency. So customized employment must always be careful in how this principle is applied, or risk further marginalizing workers with disabilities. 

You can learn how to better customize and safeguard job matches through a training presentation on-demand at TRN called Job Customization and Carving.

A Candid Conversation on Disability Issues

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.

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

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. 

Discarding An Old Narrative: Shine a Light on Indignity

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.

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

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 – 

What do People with Disabilities Want for Employment Services?

The statements below are from a white paper produced from a March, 2011 Summit by leaders from the Autistic Self Advocacy Network, the National Youth Leadership Network, Self-Advocates Becoming Empowered, and allies. Including not only Summit proceedings, but a broad range of interviews besides, the authors “…believe that this report and the process that led to it was broadly inclusive and captured many voices typically left out of these discussions.”
Community Living and Employment:  
Whether we work in sheltered workshops, enclaves, or day habilitation centers, vocational segregation of us from people without disabilities does not count as community living. It is not gainful employment if we do not have the opportunity to make money at the same levels as other people who work in our community. We lose an important aspect of community life if we spend our time only around people with disabilities, in day habilitation centers, and are not able to be included in our broader communities. 
We must have opportunities to work in jobs as part of the general work force, among people who do not have disabilities. Opportunities for earning wages and benefits should be the same as everyone else. CMS funding should be used for supported employment and not be used for sheltered workshops or settings paying sub-minimum wage for people with disabilities. CMS community funding should not be used for any segregated settings, including day habilitation centers. 
Anything that segregates us from our communities is not community.
Keeping the Promise: Self Advocates Defining the Meaning of Community Living

Pennies for Pay Must End

Recently, the Green Bay Press Gazette featured an article that reviewed the ongoing debate over the use of subminimum wages for people with disabilities. The publication found over 10,000 Wisconsin citizens with disabilities earn less than minimum wage, ranging as low as 2 cents per hour. The article also reviews a local sheltered workshop where 96% of workers are paid below minimum.

Readers of this blog know my position on this: A legal minimum wage should be for all citizens. For those individuals with disabilities who need support for their productivity, disability professionals must use current employment practices and technology to customize their job and their support. We should not solve hiring and productivity problems on the backs of those who can least afford it – workers with disabilities.

The argument for sub-minimum wage seems to revolve around the need for less-than-minimum-wage in order for people with disabilities to have access to employment, due to their perceived and sometimes actual lower productivity on certain work tasks. But the bigger issue is that the reason many people with disabilities are less productive when compared to a normed sample is that the work they are offered is poorly matched to their interests and capabilities, or they are not provided needed accommodations. Workers with disabilities aren’t always slower by 50%, 80%, or 90% on all work tasks – it depends on the task, the person, the job fit, and the job accommodations.
When there is a gap between performance needed and produced, the first solution is to re-analyze the job and the person’s capabilities and support needs, not reduce the pay. We should work to try to figure out how to obtain work supports and match job tasks so that the employer gets a productive worker. It is not a question of disability, it is a question of support and job matching.
What is interesting in the article are the comments of a local workshop director and some of the posted comments of the article. They express typical criticisms of those of us wanting to remove the sub-minimum wage barrier:

The stereotypes — including sweatshop-like conditions — “just aren’t true,” … pointing to… openness, clean working conditions and the fact that many employees have chosen to continue working for the organization for decades.

This story is about a group of liberals who want to do good but have no idea what harm will come from their inept actions. You really feel that unemploying this sector of the work force is a good idea? You would feel much better if these people were on benefits instead?

People aren’t being forced to work there … they have a choice.

You start raising the expected Wages, too?…….Expect Charity to disappear
Back away, Do-Gooders……….all you’re doing is feverishly paving the road to Hades

This illustrates some assumptions of many of those who manage, fund, or refer people to workshops – that it should be their choice and that without the small pay rate, there would be no employment. These are false assumptions. I discuss the choice argument in other posts. While I believe we need to stop placing people in workshops for a variety of reasons related to unnecessary segregation, I also think that the pay rate can be exploitive, and the work far too constrictive to menial work unrelated to people’s skills and interests.

There is no doubt that some individuals with disabilities are slower in certain tasks, depending on the task, the skills and the disability. Of course this statement is also generally true of all people. The thing about productivity in a sheltered workshop or enclave, or in a poorly matched or supported job, is that, one, it is largely confined to a limited scope of work, typically packaging, assembly, shipping, landscaping, cleaning or some other rather repetitive task. If you happen to be slow on these types of tasks, make too many mistakes, or just plain disinterested, then you will be judged as not ready for a real job. Two, these workplaces are not always the place for maximum creativity in job support, leading to a further performance drag on the worker.
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. For example, some jobs require skills other than speed (e.g., accuracy, good interpersonal skills). Thus, the focus on work rate as the only criteria for wage determination can be inappropriate. Furthermore, the actual methods used for time sampling are often faulty. The conditions under which people are being timed as well as the work environment itself can be unnatural.
Mike might earn pennies a day for his slow pace assembling a business mailing, but at the YMCA where he welcomes customers and checks their membership cards, he might be at 100% productivity for the employer. That is, with a little help, he does the job asked. Success comes from liking the work, the people, and this makes him feel good. He also has the supports needed to succeed. Thus, he is motivated. And, he is good at what the employer needs.
This is real productivity. The law does not allow a disability professional to pass judgment on who is productive to earn the right to a job based on incomplete or invalid information. And nor should it allow anyone to determine that an individual is only qualified to earn pennies an hour. This disability system needs to figure out what a person wants to do, needs to do, and needs 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. Minimum wage should be the minimum – by definition, the lowest you can go. If there is a productivity gap for a particular employee with a disability, let us work with an employer to solve it in some way so that the cost does not come from the worker who is already likely to be living below the poverty level. Special wage certificates are an “easy out” and no real solution to unemployment and underemployment. And the irony is that these often “token wages” are applied to a group of people who are the most in need of income.

On Simulated Communities for People with Disabilities: From Agency Businesses to Gated Disability Neighborhoods

Ah, vacation. I am sitting on a porch in a house in the Great Smoky Mountains, altitude about 4,000 feet, in just about near-perfect weather. My family and friends have enjoyed great food, good company, music, hiking and other pleasures. It makes me consider the nature and value of community. In the disability field, we talk about the community as if it were a single place where one lives, including its various surrounding people, businesses and social groups. But actually, there are multiple communities we all participate in and which sometimes move with us. 
Also, we are constantly evolving, building and deconstructing communities, depending on interests, needs, and locations. When I travel to a new place, like now, a few of my social communities actually come with me, such as friends, family, and my virtual networks. And I also might enter into new communities I discover here, as I bike, hike or play music. I view most of these communities as a significant part of my life. They enable me to interact with people I care about, work colleagues, advocacy groups whose causes I am involved in, or interest groups I enjoy.
One of the characteristics of our disability service system has been to congregate people based on their disability label or perceived need for services, in effect “creating community” for them. This is thought to be advantageous for cost efficiency, as well as in the interests of people with disabilities who are assumed to prefer to be with “their own kind.” But congregation has had several disastrous unintended consequences on the quality of their lives, particularly in terms of impoverishment of their participation in diverse communities. Most importantly, it has resulted in a segregated life experience for people with disabilities, as most still attend special classrooms or schools, live in separate housing – ranging from institutions/nursing homes to groups homes and work, or are “kept active” in separate facilities such workshops or therapy centers. Segregation in turn has had other effects that reduce the quality of life.
In this post, rather than detailing the horrific impact of segregation has meant for people, I want to focus on the misguided efforts some are now making to “correct” segregation. In my travels as a disability consultant, I have observed various initiatives that, in effect, try to simulate integrated communities for people with disabilities. This has included:
  • spending millions of dollars to clean up and rehabilitate segregated facilities such as institutions, nursing homes, or large group homes to be more safe and “home-like.”
  • attempting to create agency-run businesses within non-profit disability agencies, to primarily employ people with disabilities, but also including non-disabled workers as well.
  • “reverse-integrating” sheltered workshops by hiring some individuals without disabilities to work alongside the workers with disabilities, to make them more “business-like.”
  • building new enclosed neighborhoods, sometimes as gated developments, that would be “community housing” for individuals with disabilities.
All of these attempts, and many more, are well-intentioned efforts to either to reduce segregation or help correct existing bad conditions in segregated settings. But they are artificial solutions that are deeply flawed and only deflect from the real needs people have. The argument often is that these steps are closer to real community. Or that they are “better than” what exists now. But this misses the point. It’s like trying to frantically repair a ship doomed to sink. Why not get everyone off the ship and back to where they should be? We should just admit that the very idea of this particular ship was the actual problem.
Creating community is of course possible, but only when people come together for a real reason of interest, location, or shared value. Engineered communities (especially when membership revolves around on a life characteristic such as a disability condition or label) are not nearly as powerful or real as those that arise from natural sources (unless we are talking about advocacy). Artificially simulating community for people with disabilities, especially without their input and informed choice, produces outcomes that fall far short. After a while, conditions, failures, and faults become publicly exposed. We then try to fix the simulated community by making it nicer or better. That just tragically postpones the real and desperately needed solution. 
People with disabilities belong, first of all, in their real and already existing communities – all of them that apply – the “common unity” of location, work, passions, skills, families, religion, and so on. Where we need to focus our resources is to advocate, adjust, and/or support each community when it falls short in welcoming anyone, or preventing full participation, because of their differences.