Supported Employment for people with Developmental/Intellectual Disabilities

 

I recently participated in a webinar regarding transforming sheltered workshop situations to supported employment.  While I wholly support meaningful employment for all people I had a hard time getting past the judgmental attitude and biases of the presenters of this webinar.

There was much good information regarding difficulties with change, fundraising and gaining support for projects but I do not think that the presenters fully understand some issues of the families and people with intellectual disabilities.

Sheltered workshops are not what these presenters say they are.  They are not warehouses in which people sit and do piece work all day long.  The sheltered workshops that I have seen are actually quite enjoyable and when I have asked the employees if they like they jobs, their faces light up with pride, they happily show me what they are working on and for those who can speak, they answer in words or phrases that indicate their enjoyment of their work experience.

The presenters talked about roadblocks that people have to change.  One that they mentioned was “what are the people going to do during the day?” Supported employment may only be a few hours a week.  If supported employment is going to replace sheltered workshops, one needs to think about what will happen in those other hours.  These presenters did not want to think about those hours since it was not their program and did not seem to realize that if a person is taken out of the sheltered workshop environment and placed into a supported employment situation there would be a huge void in these people’s lives.

 

As with behavior modification techniques one needs to have a replacement behavior in place prior to removing the “offending” behavior.  I would think that in this situation, one would need to have replacement activities in place prior to removing hours of structured time.  This major issue does not seem to be a concern for those who advocate for supported employment.

One often hears about people “volunteering” prior to having a paying job.  What one doesn’t hear is that volunteering for a person who needs 1:1 support is much different than a person without support needs volunteering.  If a person receives 20 hours a month of support – that support is used for either “volunteer” or employment.  It’s not as if the person who needs support can volunteer and fill their time up that way.

What I think that people are missing is that many of these people with high support needs also need support for recreational activities and all activities of daily living.  When support is taken away for a great majority of the time that they had support, who will step in and provide that support?  If there is only money to provide for 20 hours of supported employment/volunteer time a month, where is the support going to come from for the majority of hours outside of the employment/volunteer time?

 

Many of the people who are employed in sheltered workshops need 1:1 support for many activities of daily living.  Many also need frequent interpersonal interaction to keep them focused or on task.  Many also need the support of others to manage their time which includes helping with recreation and other aspects of life which are not “employment.”

Recently I also attended a workshop regarding transitioning to adulthood for people with intellectual disabilities.  The issue of employment came up and a counselor from the Department of Vocational Rehabilitation (DVR) pointed out that when a person with an intellectual disability works they need to have opportunities outside of the job for social and recreational engagement.  This DVR counselor stated that many people with DD lose their jobs due to the fact that they have no other social outlets and start to use the job place for their recreation.

I’m afraid that with the limited hours that a person who has supported employment has with a “coach” puts great limits on the availability of supports for other aspects of the person’s life.  In a sheltered workshop situation, people are able to work in groups with support but do not necessarily need the 1:1 support which they would need in a supported employment situation.  Therefore, the funds for the support person can be spread out and shared with others.  This will enable more people to have employment and activities for more hours a week than if each person had their personal 1:1 supported employment “coach.”

The term “coach” is a little misleading also.  The people with intellectual disabilities who need this high level of support are not people who one would train to do a job, work with them for a set number of hours and then the employee will be trained and able to work independently.  These are people who will need 1:1 support for all hours of their employment for the length of time that they are employed.  This is a life-long disability and most of the people with this high of support need will always need this high of a support need.

I fully expect to hear from many who do not agree with my assessment of the situation.  I’d love to hear from you and hear how these issues that I raise can be overcome.

The issues of supported employment versus sheltered employment are very much like the issues of concern with a continuum of care.  We need to realize that the population of people with intellectual disabilities is heterogeneous.  We need to provide programs that benefit all – no matter what their abilities are.

 

 Below are some comments from people in the community:

 

As more residential centers close and DD centric programs are eliminated it is much easier for DSHS to deny services

The services our tax dollars buy must be used to meet the unique needs of individuals, not all of whom will find employment at Microsoft. Residential services, activity services, all services must fit the needs of individuals not the pipe dreams of DOJ lawyers and bureaucrats in DSHS and the county DD offices just keeping their paychecks, pensions, and power.

Since when are the consultants better at determining our kids futures than the parent/guardians and DSHS case managers, most of whom really do care

I’m right there with you, and having my son in a program that give me 3.5 hours a day for 5 days a week would be fantastic! He doesn’t care at all about getting paid, or about having some kind of employment that those well-intentioned folks you mentioned seem to prize so highly

DSHS has refused to let anyone else into the sheltered program for several years turning away a number of families.  A few KAT clients have found jobs, some moved out of the area and a couple have died.

The reimbursement is not the point, safety and having a purpose are more important

Most of the clients work about a 16 hours a week, 5 days 3.5 hours each day, each has a pathway to independent employment plan, realistic or not.  The Boeing contract provides almost as much as DSHS and allows every Kitsap Applied Technology employee to receive a paycheck each month based on a piece rate, our son’s pay isn’t much but it is better than sitting at home watching Muppet videos.

I am sick and tired of explaining these needs to the well intentioned, altruistic folks who have no special needs kids or have kids that are performing in top 10% of the DD population.

 

 

16 comments on “Supported Employment for people with Developmental/Intellectual Disabilities

  1. I just happened to read in Disability Scoop that “Many Adults with Disabilities do Nothing All Day” Given the trend that is happening, there will be more and more at home (if they even have a home) doing nothing all day.

    http://www.disabilityscoop.com/2012/02/15/study-adults-do-nothing/14994/

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    • Jeanne M. says:

      The reason “it seems as if they have nothing to do” is because most employers (except for places like McDonald’s, Burger King, Wendy’s, etc. maybe) are not willing to give these loyal people a chance to prove their worth. Many of them send out resumes, go on job hunts, search the net, etc. all to NO AVAIL.

      If it is true, which I pray it’s not, that they’re expecting more and more of these individuals to “spend their time at home”, it will most definitely be because sadly, the majority of employers just aren’t interested in hiring those truly worthy of doing the work.

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  2. Donna Martinez says:

    Recommended reading this topic can be found here Segregated and Exploited: The Failure of the Disability Service System to Provide Quality Work
    http://www.ndrn.org/en/component/content/article/24-hompagestories/261-report-finds-exploitation-at-work.html
    By The National Disability Rights Network (NDRN) – the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the Network is the largest provider of legally based advocacy services to people with disabilities in the United States.

    “For decades we have worked to ensure federal laws guarantee the right of people with disabilities to live and work in their chosen communities,” said NDRN executive director Curt Decker. “Yet, our investigation found that many people with disabilities are still being segregated and financially exploited.”

    It is time to move beyond the sheltered work mentality
    The report calls for:

    • Ending segregated employment and the subminimum wage by restricting all federal and state money that is spent on employers who segregate employees with disabilities from the general workforce.
    • Strengthening current and create new tax incentives for employers to hire people with disabilities in integrated workplaces at comparable wages.
    • Increasing labor protections and enforcement of existing law.

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    • “For decades we have worked to ensure federal laws guarantee the right of people with disabilities to live and work in their chosen communities,” EXACTLY!! – I totally believe this and if what I wrote makes you think I don’t, I would encourage you to re-read what I wrote. There is nothing that eliminates choice.

      When misguided altruistic people decide what they think is best without listening, understanding or knowing the situations, the choices are taken away. This is happening yet people don’t criticize this because they think they know best. They don’t.

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  3. Donna Martinez says:

    Another great read! Sheltered Workshops
    http://cirrie.buffalo.edu/encyclopedia/en/article/136/

    Alberto Migliore, Ph.D.
    Research Associate
    Institute for Community Inclusion
    University Massachusetts Boston
    20 Park Plaza, Suite 1300
    Boston, MA02116
    alberto.migliore@umb.edu

    …Finally, some raise concerns about the possible lack of self-determination to which adults with disabilities in sheltered workshops are subjected. An ethnographic study involving 16 adults with disabilities in a sheltered workshop revealed that about a third of participants wanted to work outside the sheltered workshop. Moreover, most of the respondents had very little or no exposure to outside employment to make an informed decision (Dudley and Schatz 1985). Another study involving 275 persons attending three-day centers in Belfast revealed that up to one-third of the participants would have liked to work outside sheltered workshops. These proportions were higher among people who had had previous work experiences in the open labor market (McConkey and Mezza 2001). Similarly, Jordán de Urríes and Verdugo (in press) found that about 40% of the 60 adults with disabilities from 20 sheltered workshops in Spain wanted to leave the program to learn new things and make more money. In yet another study involving 210 adults with developmental disabilities in 19 sheltered workshops in the USA, the majority of adults with disabilities (74 percent), parents and caregivers (67 percent), and staff in the sheltered workshop (65 percent) thought that work outside of the sheltered workshop was the preferred choice or at least an option. Only 14 percent of adults with disabilities and only about one-third of parents and caregivers and staff believed that work outside the sheltered workshop was not the preferred choice (Migliore et al. 2007).

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    • Again, I would point to choice.

      Thank you for your resources, I have also read many of these studies and there are good and bad points to all of them.

      The sheltered workshops often referred to are not what the sheltered workshops around here are like. I believe the sheltered workshops have also undergone a transformation from what people believe they are to what they really are. The same with “institutions.” The people who oppose congregate care often refer to institutions of over 30 years ago. I don’t know any anti continuum of care people who have recently (within the past 5 years) visited one of our ICF/IDs yet they talk as if they are fully aware of the situation. They are not.

      Why does this issue have to mean for one type of service to work, another type of service will see a demise? I believe if we start to institute a system such as that not only services will die but people will. We are already seeing this happen with the rapid deinstitutionalization of some of our most complex vulnerable people. There are not adequate or appropriate supports in the “community” for them and without those supports their lives are in danger. Is this what people want to happen?

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  4. Donna Martinez says:

    BTW… Have been to ICF/MR in the last 5 years (NoVa Training Center in Virginia) to be specific. Glad to say that the Department of Justice has moved enforce their closure. I also sat on a panel forclose to 10 years with many other agencies in VA to help move our state of VA towards more inclusion… you know that bit about the one size and all. Curious that the waiver system is all about waiving ones right to be placed into an institution.

    RICHMOND, Va. (AP) — Virginia will close four of its five institutions for housing the developmentally and intellectually disabled and transition those services to the community under a 10-year, $2 billion settlement the state entered into Thursday with the Department of Justice.

    The settlement, filed with the U.S. District Court in Richmond, ends nearly a year of negotiations with the Justice Department, which determined after a three-year investigation that Virginia violated federal law by needlessly warehousing those people in institutions instead of providing adequate community-based services.

    Of the $2 billion it will take to implement the settlement agreement, $935 million would come from the federal government. Officials hope the money saved by closing the facilities will bring the state’s total cost down to about $340 million over the 10 years.

    Virginia agreed to close the institutions by 2020, leaving open 75 beds at Southeastern Virginia Training Center in Chesapeake. There are currently more than 1,000 people housed at the state’s five facilities.

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    • In the long run I believe people will see that there is not cost savings. Our state has spent at least 4 times over what they expected they would “save” from closing an institution and more will lose services still. It’s a sad state of affairs led by those who do not understand the reality. Much of the data is not based on accurate figures and doesn’t take into account the support needs of the individuals.

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  5. Donna Martinez says:

    THIS JUST IN ON SHELTERED WORKSHOPS:Sheltered Workshops Offer Little Benefit, Studies Find
    http://www.disabilityscoop.com/2012/02/21/sheltered-workshops-benefit/15035/

    By MICHELLE DIAMENT
    February 21, 2012
    Sheltered workshops are significantly more costly, yet no more effective than supported, competitive employment at ensuring job prospects for individuals with disabilities, new research suggests. (http://aut.sagepub.com/content/16/1/87.abstract?etoc)

    Two new studies — one focusing on adults with autism and the other looking at individuals with cognitive disabilities — compared the outcomes of those who started out in sheltered employment with those who did not.

    Segregated work environments are intended to teach those with disabilities job skills so that they can later move into positions with mainstream employers, supporters of the programs say. But the findings of both studies are sharply calling this premise into question.
    In both cases, researchers found that people who spent time in sheltered workshops were no more likely to be employed, but earned less and were more costly to support than their peers who did not start out in segregated environments.

    In the study focusing on adults with autism, researchers report in the journal Autism that those who started in sheltered employment and later moved to competitive work situations earned more than 30 percent less and cost about twice as much to support.

    “Results presented here suggest that individuals with ASD achieve better vocational outcomes if they do not participate in sheltered workshops prior to enrolling in supported employment,” wrote researchers from Kent State University and Virginia Commonwealth University in the study.
    The findings are based on an analysis of vocational rehabilitation records for 430 individuals with autism, half of whom worked in sheltered employment and half of whom did not. The individuals in the two groups were matched with each other based on diagnosis and gender to offer comparable samplings.

    The researchers said that their results mirror those of a second study expected to be published soon in the Journal of Vocational Rehabilitation. That study used similar methods to examine the experiences of nearly 10,000 adults with cognitive disabilities.

    The implications of the findings are significant, the researchers said, noting that currently more than a half million Americans with mental and physical disabilities work in some 7,000 sheltered workshops across the country.

    However, the reasons why those without sheltered workshop experience fared better are not entirely clear.

    “Participating in sheltered workshops diminished the future outcomes achieved once individuals became competitively employed, perhaps because the skills and behaviors individuals learned in sheltered workshops had to be ‘unlearned’ in order for the workers to be successful in the community,” according to the research team that assessed the group with autism.
    Other factors like the severity of an individual’s behavior challenges might also play a role, they said.

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    • When reading this there are several issues that come to mind – the severity and support needs of the person are not even addressed. Maybe the reason they were in a sheltered workshop was due to their higher support needs? The last sentence is telling too “Other factors like the severity of an individual’s behavior challenges might also play a role, they said.”

      I still believe in choice and I do not think is is wise to shut down these workshops for ideology gone awry. Just tonight I gave a presentation to Shoreline City Council. A woman from Parkview Homes gave me their booklet and right in their book it talks about the group home they run and the residents.

      “Vocational programs of two residents have created
      changes in their daily routine. With the closing of
      Northwest Center’s sheltered workshops, two residents
      are going to be laid off. Both will be enrolled into
      Northwest Center’s community employment program,
      which will provide them a job coach and hopefully
      community employment, but the future of their work
      life is unclear. Not only does this change the nature of
      how we care for our residents, but may also affect how
      the household interacts together as now three of six
      residents will be without a day program.”

      http://www.parkviewservices.org/PDF%20Files/AR2011SWeb.pdf

      Is this what the future looks like as more sheltered workshops close? This IS NOT in the best interest of anyone.

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    • There are a few issues regarding the benefits of sheltered workshops that are totally missed in these discussions – that of time management, engagement with others, support for ADL’s and activity. When one looks at the earning potential and how one advances to a supported employment job as the only criteria, one is missing a huge benefit of the sheltered workshops for those with very high support needs and complex needs.

      Supported employment, while a great option for some, does not fit the needs of others. When a person chooses supported employment, they also lose benefits such as community access or day programs to help them with the other hours of their day. For many, this may not be an issue but for many it is. There are some people with a mental and emotional age of about 2 and they don’t care about having a well-paying job – they care more about being with people. Why should these people be denied the services which benefit them better?

      This is why we need a continuum of care. What is happening is sheltered workshops are being closed for supported employment yet there are not enough jobs in supported employment for these people. We are adding to the ranks of the unemployed by doing this. Also, without providing a replacement activity, we are denying these people their rights to quality of life.

      I believe there is a need and a place for sheltered workshops – not as warehouses as many opponents to them think they are but as thriving day programs for those with high support needs.

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    • Carol says:

      I agree. If all you know, and have access to is a sheltered workshop then you will most likely be happy with what you get, but it doesn’t mean you aren’t capable of developing any further as a person, with capabilities, dreams, and ambitions.

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  6. How many people would like to hire a full grown man who throws himself on the ground in a tantrum because he might not get to for for a ride in a car and not get to see the park that he wants to drive by? What about if he decides he doesn’t want to do the work and throws a tantrum? How are these issues addressed in a supported employment situation? How many employers want to hire a person with the emotional stability of a 2 year old? I hate to sound cynical with this but I’m realistic. There is a place for my son but it’s not supported employment. There are many other things that he can do and I do not want those choices taken away from him just for the sake that people with some misguided altruism think he should be able to do these things. I’m also not selling him short – he has early onset dementia with neurodegeneration already prominent on his MRI. Things are not going to get better and I only hope to allow him to make the choices he can. He needs constant support to manage his ADLs and activities – he will never be able to be taught a skill then flourish on his own. Sorry – but that’s the reality of the situation for many of us.

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  7. Carol says:

    I have worked in Community Support for over 12 years, and part of that time was assisting people to find employment. The people that I worked with could be seen as being incapable of having meaningful work by many people, but the fact is that with the right supports from the community agencies, families, and employers they are capable. Yes, there are people who do not benefit from employment..but this is not the majority. If we can make change within the systems then it is a viable option for many people. If we can work toward transforming the systems in place then we can provide the support that people need to be able to fully participate. This doesn’t mean everyone needs to have a job to have a meaningful life, but that there needs to be a system over haul that allows for a variety of support systems to meet people’s needs. I don’t feel that workshops are an answer, but they are a step away from 20 years ago when the majority of people with disabilities were institutionalized and segregated. Reflect on how far change has already occurred for many, having come from being considered as burdens on society to where we are at present. Yes it’s idealistic thinking, but so was Community Living. It is a societal change that needs to once again take place, so that the concept of employment roles for people with disabilities can become common place. It’s a lot of work, and it’s a team effort between all people involved. It isn’t a case of fitting people into boxes, it’s getting out of the box.

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  8. Don Weikle says:

    I have worked in support of people with intellectual disabilities since 1972 being privileged to work with some of the pioneers including Wolf Wolfensberger and Marc Gold. At the base of our movement has been an elementary concept common to all Western societies, free choice. When I began, sheltered workshops were the cutting edge of our field. We were fighting against a dogma that confined people to seclusion either in institutions or hidden away in family homes. I have worked in Sheltered Workshops, been a Job Developer, Job Coach, Supported Living Worker, held many management positions, and am now a CEO.

    I shall never forget the most important lesson I learned in the first weeks of my employment, people with intellectual disabilties are people first and have a right to choose where they live and work. Those choices may not always be the politically correct ones. They may not always be the ones we professionals think are “appropriate.” The choices of where a person lives and works are not ours to make. So the ideological purist who campaigns for the closure of sheltered workshops or group homes is asking the wrong question to begin with. The person should be made aware of all of the choices, and should be given the opportunity to re-learn about those opportunities and about new ones. The right question is, “Where do you want to work/live?” Whether the answer is in a sheltered workshop or a job elsewhere in the community, it is then our job to provide it. It may mean that a person who is capable of working elsewhere in the community works in a sheltered workshop. It may mean that a person with multiple behavior challenges, medical issues, and/or physical challenges will require significant levels of support at the worksite. We now fight a dogma that argues tht “full inclusion” must be the only choice. It is as wrong and hurtful as any of its predecessors. Always, always go back to the person. Always ask the person. It is their choice. It is their life. We do not have time for ideology.

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  9. as a former vocational rehabilitation client my counselor wanted me to work industrial services of guilford a sheltered workshop i told her no thats was back in december 1984 april 28th i took a tour of goodwill industries a week later i started working there i got paid sub minimum wage doing dull boring stuff i assembled spindle adapters for 6 measly cents piece rate pay my counselor judy lock hart told me i would get paid based on productivity she with held information goodwill industries is a sheltered workshop/sweatshop another industrial services it’s time for sheltered workshops to be closed down for good i didn’t have a intellectual or developmental disability vocational rehabiiltaion got information from mental health i plan to seek legal action against goodwill industries vocational rehabilitaion and mental i’m going to get the file marked confidential with the information about and i will destroy that file to goodwill industries and sheltered workshops you’re in violation of state and federal laws the ceo’s need to work for penny wages

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