All posts by daledileo

segregation supported employment

Employment First: A Promising Hope, but at Risk of Being Watered Down

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Last month, I had the privilege of speaking at two statewide disability employment conferences, one in New York and one in Minnesota. These events focused on “Employment First.” This concept refers to having employment be the primary expected goal for working-age adults with disabilities in government-funded day services, and for those services to support that realization of that goal.

Those of you who regularly read this blog know that I have articulated the current sad state of segregation and non-work services being provided to the large majority of individuals currently in the disability system. Employment First represents an opportunity to reset priorities back to where they should be – providing people with meaningful and integrated work from the start. But it is important to recognize that this is not a simple problem with an easy prescription.

It is only after we understand the meaning and scope of the needed shift in expectations that we can begin to understand what Employment First really means and how it challenges our current system. The problem that continues to perpetuate a segregated work system is the fact that most individuals with disabilities newly entering the disability service system still continue to enter segregated facilities. About $0.80 of every state and federal rehabilitation dollar spent for day program and employment services in state developmental service systems across the US support segregated services.

Regarding Employment First policies, I believe it is not enough to have meetings, “consensus statements” or “white papers.” These may represent a fair start, but let’s not confuse talking with progress or outcomes. We need legislation, public policy, and funding to change significantly. Otherwise, we water down the promise of Employment First by only paying lip service, with few real consequences for inaction.

Here is the golden nugget that most states cannot bring themselves to – we need to publicly acknowledge that the segregated nature of much of the disability vocational training system to date has failed. It has not only failed to produce good job outcomes for people with disabilities, but also has acted at times as an obstacle to people with disabilities leading fulfilling lives. Facility-based sheltered work has been a barrier by adding stigma to its workers, paying predominantly sub-minimum wages, and wasting time and resources that could be spent in actual employment. In addition, service components of much of disability job training, such as intrusive behavior management, labeling, and other artifacts of the human services system, have created further barriers to job success.

Employment First coverUntil we stop placing people in segregated and/or non-work facilities, the likelihood of systems change, Employment First or not, will be small. I have written a manual that goes into this argument in more detail. It also details the steps needed to make Employment First a Reality. To learn more: https://trn-store.com/employment-first

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. 
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Thoughts on Employment First: Don’t Water it Down!

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Employment First refers to a relatively new movement to change public policy for individuals with disabilities who receive publicly funded day services. Employment First begins as an effort to change the expectations people have about the ability of people with disabilities to work – in policy, in practice, and in person. It refers to having employment be the primary expected goal for working-age adults with disabilities in government-funded day services, and for those services to support that realization of that goal.

Employment First presents a great opportunity, but there is a real concern that new employment initiatives, while well-intentioned, will be developed incompletely and ultimately again will do little to change a largely segregated and entrenched vocational system. That would be a tragedy.

We must avoid having Employment First go through a process of misunderstood implementation, leading to an all-too familiar conclusion about new innovations that are perceived as being attempted and falling short, or “We tried that and it didn’t work…”

TRN has released a new manual on this topic that I authored. Most likely the most challenging point of this manual on Employment First is its position to publicly acknowledge that the segregated nature of much of the disability vocational training system to date has not only failed to produce good job outcomes for people with disabilities, but also has acted at times as an obstacle to people with disabilities leading fulfilling lives. Facility-based sheltered work has been a barrier by adding stigma to its workers, paying predominantly sub-minimum wages, and wasting time and resources that could be spent in actual employment. In addition, service components of much of disability job training, such as intrusive behavior management, labeling, and other artifacts of the human services system, have created further barriers to job success.

Politically, many agencies, including national associations, have tried to focus on growing integrated services as a strategy for change. One noted, “We believe that the best strategy …is to focus on developing more jobs, as well as the programs, services, and supports that people with I/DD need … The employment and services marketplace will evolve accordingly and unwanted employment options will fade from the scene.” (Arc of the US, 2011) Unfortunately, twenty years of employment outcome data has shown that this has not proven sufficient. Segregated facilities are entrenched and growing larger in the numbers of people served every day.

We need to acknowledge that this must change. This begins by recognizing that the segregated, facility-based approach will not simply fade away. There needs to be agency commitments to immediately end new referrals to segregated models and, secondly, put in place strategies to downsize facility-based models over a reasonable time span. These need to be part of Employment First.

choice institutions

Restrict Choice? You Bet!

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Numerous recent comments sent to the US Administration on Developmental Disabilities from the “Voice of the Retarded” have centered on maintaining a range of choice as the main argument against the desegregation of institutions into the community. See (http://www.envision2010.net/others.php) Institutional and sheltered work advocates have long relied on the “choice” argument to support their views. They say ending segregation removes an option for them about how they want their family member’s life to be. They go on to say community-based services can be unsafe and inadequate. 

They have set up a false choice.

It is false because we should never use taxpayer funds to segregate people who have done nothing wrong, whatever disability challenges they pose. Government sets priorities all the time about what choices it will provide its citizens and what it will pay for. There is no inherent right to be housed in an institution at taxpayer cost. If an option has been shown to be ineffective, morally objectionable, and comes at a higher cost than other community-based alternatives, it need not be an available choice. Most everyone agrees that we have a moral obligation to support our citizens with disabilities, but there is nothing implicit in that belief about doing so through an expensive, taxpayer-funded model that takes people out of society and puts them in a simulated society “for their own good” when we have more cost-effective, integrated solutions available.

As important, people don’t need institutions because some community settings offer inadequate support. People don’t need workshops because sometimes a job doesn’t work out. The solution to this is to improve community support to the quality level we know that works from research, not build substitute, artificial communities. 

Society absolutely knows how to properly support people with medical, learning and behavioral challenges without resorting to institutional or segregated placement. It also is time that institutions, an obsolete service model, are finally removed from the menu of choice. A number of states have done so with good evidence to support the improvement in quality of life for people with disabilities. With what we know today about how to support people in community settings, where all of us belong, it is simply wrong to offer segregated options, as the Supreme Court Olmstead decision implies. 
segregation sheltered workshops

Why I Resigned from The Alliance for Full Participation

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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.
institutions

Illinois Nursing Home Residents with Disabilities File Suit

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Five individuals with physical disabilities living in nursing homes have sued Illinois state officials for unnecessary institutionalization as discrimination under the ADA. The lawsuit seeks an order permitting people with disabilities in Cook County, IL, to access services in their own homes or in community-based settings rather than nursing homes. The class-action lawsuit charges that warehousing persons with disabilities in nursing homes segregates them from their own communities. According to the Center for Medicare and Medicaid Services, more than 31,000 people live in nursing homes in Cook County. In six of the ten largest facilities, housing hundreds of people each, the majority of the residents are not elderly.

institutions

On the Road in Iowa and Kansas

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My apologies to my readers for the gap in posting. Since the release of my book, Raymond’s Room, and with the end of the fiscal year, I have been very busy. Right now I am in Kansas, having just arrived from Iowa, where I presented at a statewide Case Management Conference.

I spoke to numerous Iowa professionals who were frustrated with the lack of options for people with disabilities, especially for those who wanted to leave their sheltered workshops. Iowa also still has two institutions for people with developmental disabilities, and a number of large Intermediate Care Facilities (ICF-MRs) to provide housing.

One institution, in Glenwood, where about 400 people now live, was recommended just a few years ago to be shut down by the Iowa Department of Inspections and Appeals following the death of a female resident and several reports of sexual abuse of other residents. The woman, who was blind, had trouble walking, and was supposed to be supervised, fell head-first down a staircase. She died a few weeks later after being hospitalized with multiple neck and rib fractures. The other allegations involve a staff member who is suspected of sexually abusing five residents and bullying coworkers. It is touted by the state as the “first state facility of its type to house ALL of its people in normalized community housing.” Normalized?

The other institution, in Woodward, also has had serious problems. A 45-year-old resident, who had mental retardation and cerebral palsy, suffocated to death due to staff restraint in 2001. The resident had begun kicking, hitting and spitting at staff members. Several responded by putting him into a device that held his wrists to a waist belt. They then held him face-down on the floor for at least 15 minutes. According to official reports, the staff refused to release him even though he began sobbing and repeatedly said he was sorry. It was only at the point where one staff member noticed that resident’s skin was turning dark blue that they turned him over and tried unsuccessfully to revive him. The Des Moines Register reported that the institution had been cited for more than two dozen violations related to restraints.

Both institutions remain open today.

Both are deemed as necessary by Iowa state leadership.

Really? The following states have closed ALL their institutions for people with developmental disabilities:

  • Alaska
  • District of Columbia
  • Hawaii
  • Maine
  • Minnesota
  • New Hampshire
  • New Mexico
  • Rhode Island
  • Vermont
  • West Virginia
  • Labrador has closed all of their institutions
  • for persons with intellectual disabilities.
  • The Province of Ontario is actively preparing
  • to close its last three remaining institutions.

C’mon Iowa. Join the movement to full inclusion. It’s time to leave the last century behind.

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

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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.

employability sheltered workshops supported employment

Employability is a Given, Not Line to Cross

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During a recent training course about supported employment I gave, I found myself in a debate with a manager of an agency over whether people with disabilities should be “presumed employable.” I was most discouraged by this professional’s statement that the “overwhelming majority of these consumers are not employable.” To me, that is the single biggest obstacle people face – the low expectations by others.

Interestingly enough, in the US, current law mandates a presumption of employability. The reauthorized Rehabilitation Act begins with a presumption of ability that people can achieve employment and other rehabilitation goals regardless of the severity of disability, if appropriate services and supports are made available. The concept of employability has been replaced with one of “employment outcome.”

Despite this, I still often find myself debating with others whether the presumption of employability means everyone (as I believe), or just those judged as capable.

Ultimately, it is the belief in what people can achieve, despite the obstacles, that will drive their employment opportunities. And for this to happen, we need to re-think people who have a developmental disability or a mental illness as someone whose life is to never have a decent home or job because of some focus on a belief in a chronic, never-be cured aspect of their lives.

I have been struggling for years to advance the notion that people in sheltered workshops deserve the right to live and work in the community in real jobs and homes with the rest of us. I believe a huge body of research, national outcomes, and our collective experiences have demonstrated that it is more than possible. And my sometimes exasperated reaction to these kinds of debates probably reflect frustration with people in management particularly who dismiss these notions as unrealistic or requiring much more money. I think more money can help, but the reality is the service system already gets a great deal of money, but it is spent unwisely -on buildings, excessive salaries, etc.

Not too long ago, my colleague and long-time friend Bob Lawhead testified before Congress about the wasted spending and poor outcomes of sheltered workshops and day training programs. At the same time, a Congressional investigation found excessive management salaries and deal-making going on in some of these agencies. Can we justify a CEO earning $700,000, when hundred of workers labor in her workshop at sub-minimum wage?

I do not think it is not bad or evil somehow to have been taught that sheltered workshops (or institutions) are needed for a certain percentage of people. 20 years ago I had that belief myself.

But I do think it is wrong to still have that belief after you have been exposed to what is possible today – and that is real jobs and real homes, regardless of disability.

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.