All posts by daledileo

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.

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… 

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.

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 – 

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 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.

• 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.