Monday, January 28, 2013

The Problem with Pro-Inclusion but Not Anti-Segregation



I recently gave a speech at a conference, and afterwards was approached by an individual who had a pointed criticism of my talk. "I support your message of inclusion, but why do you have to argue against facilities? Most of us work in these places. They will eventually change and workshops and day programs will just disappear if we do a good job with inclusion."

His point was that we can change things without negativity. We don't need to highlight the problems, just highlight the better solutions. And once we start getting people jobs, better homes, and more community support, more traditional programs will evolve. Agencies will no longer need or use facilities. He concluded his argument, saying that worrying about facilities just takes up too much energy and disrupts the field.

So, can inclusion of people with disabilities be promoted without fighting to end existing segregation?

Sadly, no. And the evidence against "waiting for evolution" is persuasive.

First, think about other social movements. Consider the long struggle for racial equality. Nearly 150 years of effort has demonstrated you cannot obtain civil rights without acting to end segregation. You cannot leave people in their isolated homes, schools, workplaces, and busses, and as we offer opportunities, hope the old paradigms will fade away. They didn't and they don't. It took legislation, civil disobedience, media exposés, demonstrations and more to get closer to inclusion. It took active work against segregation.

It is really no different in any social movement, including the disability field. For instance, the number of institutional residents with intellectual disabilities has declined steadily the last fifty years, but nearly all of this is due to class-action lawsuits. In other disability service areas, segregation actually seems to be increasing. Recent studies have shown steady gains in the use of facility-based work. Also, "non-work" programs have increased dramatically. Despite increases in supported living and employment in terms of pure numbers, the percentage of inclusive programs relative to all services haven't gained at all in the last 15 years, and the gap seems to be widening.

A great illustration of this is supported employment. Segregation has not "evolved away" in vocational services despite 30 years of job placement success of people previously considered unemployable. Serious change will require (yes, require, as in limiting choice) phasing out common practices of today, including sub-minimum wage, facility-services, group employment models, congregate housing, institutionalization, and other obsolete models. 

I think muting criticism of facility-based services is exactly the wrong thing to do, painful as it is to hear. We don't have to belittle agencies or the people who work there. They work hard and are dedicated to their jobs. But we must continue to forcefully speak out against the continued needless segregation of those with disabilities. Too many people verbalize how they are “pro-inclusion,” but then they do nothing to act on segregated programs and practices within their own agencies.  

It's not enough, for example, to say you want "Employment First," without also pointing out the workshops must eventually close. Social change also does require demonstrating a better path and not just griping about what's wrong. But it also must include criticizing ineffective practices that are not working to evolve, and speaking out for justice when it isn't given. Let's stop wasting people's lives now, while waiting for some future fantasy evolution to come. Make change happen today.

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11 Comments:

At January 29, 2013 at 1:24 PM , Blogger suekillam said...

Great, great editorial Dale! I couldn't agree with you more! I am constantly conflicted about sheltered workshops and segregated services and whether we now need specific and focused advocacy to end these services because they SEGREGATE!. As you state....despite the 30+ years of supported employment and job placement successes, segregation has not "evolved away". It is time to not only LIMIT but to END service options that SEGREGATE. No Matter how you slice it...SEGREGATION is WRONG!

 
At January 29, 2013 at 1:32 PM , Blogger hazu said...

If we don't point out the failures and only focus our attentions on the successes, we can create the illusion for ourselves and others that segregation is a thing of the past. All this, while thousands remain captive in ICF/MRs, state-run institutions, nursing homes, sheltered workshops, day habilitation centers and segregated classrooms in mobile home trailers out behind the real school of America. Yeah, illusions are fun, but only truth can set you free.

 
At January 30, 2013 at 12:14 AM , Blogger KodiakDon said...

People with disabilities are considered second class citizens - essentially noncitizens. The Workforce Investment Act makes people with disabilities (as well as many other poor people) subordinate to job creators.

Self-employment and home-based businesses are the most viable alternatives to help people rise out of poverty and we need to start making certain that the system (all the various agencies) are inline with that.

 
At January 31, 2013 at 8:47 AM , Anonymous Steve Savage said...

Thanks for being clear on this issue Dale. 30 years ago I left the management of sheltered workshops because there was such limited movement from them to community employment. Of the six I was involved in then five remain open today. At that rate it will take 300 years for the rest to close. The money, brick and mortar and politics of old support structures have proven to be self sustaining and segregating. People with disabilities can't wait 300 years for real jobs.

Steve Savage

 
At February 1, 2013 at 11:25 AM , Anonymous Anonymous said...

To suggest that "one size fits all" is wrong. The well-intentioned author will accidentally set the disability movement back ages with his outrageous demand that employers hire people with disability who produce at levels substantially less than their co-workers and receive the same wage. Handouts are a thing of the past. Dale, by law Essential Functions of the job can include productivity. This nonsense brings back the horror story of a well-intentioned Lou Brown in Madison who actually encouraged people with disabilities to work in a laundry as volunteers. Thank God Wage and Hour stepped in.

 
At February 5, 2013 at 10:28 AM , Anonymous Anonymous said...

As an aunt of an adult with a disability who has discussed this issue at length with her mother, removing the element of choice of wrong. While employment first is well intended, it will only create the isolation and segregation it's trying to avoid. Like all workers, people with disabilities have a wide range of skills and talents and should have the right to choose what they do and where they do it.

With the right training and support, and the right employer, my niece could successfully work in the community. This is my preference, but what is the reality? Considering the fact that the unemployment rate for people with disabilities is twice that of the regular population, it will be difficult for her to find a community job. Those with disabilities who have jobs work irregular or limited hours, or once they have been hired, they’re among the first let go due to budget cuts. And even though incentives are given to companies that hire people with disabilities, what will happen when those incentives are eliminated?

CRPs offer consistent, regular employment. Maggie worked at at a CRP this past summer. Her mother hesitant, but there weren't a lot of options. And the option readily available – to spend hours at home doing nothing – was not one. At the CRP, Maggie worked in a safe, supportive environment and enjoyed the work. The experience helped us envision a future for Maggie that will perhaps include employment in the community, as well as at a CRP. Her days will have structure and consistency. We felt the weight of anxiety lifting.

But, unfortunately, the growing Employment First movement, while well intended, would basically dictate Maggie finds a job in the community or else be assigned to a day service program with no work opportunities. This doesn’t expand Maggie’s options. It limits them. The abled and their families have choice when looking at their futures. So should Maggie and my family.

As Maggie navigates her way into the working world, she depends on CRPs for a continuum of opportunities that will provide a future for her that is meaningful and productive. Our family depends on it for those same reasons.

Inclusion should be about us all having choices and not being forced into a situation that may not be right.

 
At February 16, 2013 at 9:51 AM , Anonymous Anonymous said...

I love how the "family" of people with disabilities feel they have the right to decide what is right for everyone.

TFB if the "family" is forced into something.

That whole paternalistic "we know best because we're their family" attitude is why we need laws

 
At March 2, 2013 at 1:18 AM , Anonymous Anonymous said...

Sheltered workshops were created by parents, in a time when people with developmental disabilities had NO options. They were ground breaking at the time. But, we have come a long way since then. In the 50's, when "facility based employment" was created, many if not most, people with DD weren't even able to attend school. Their options were beyond limited. Today, our kids are not only educated, but they are often educated among their typical peers. If we are educating our young people with DD, and pushing for inclusive practices in the educational sector, why should we "settle" for a system that was created 50+ years ago to fit into a different era in time? We are in a new age. It is time to embrace how that impacts the future of people with DD. By having sheltered employment facilities in existence, we send a very powerful message to not only families and their loved ones with DD who are feeling desperate, but the community as a whole, and businesses. If we "create" special places for special people, we take away the responsibility that we all have to understand, accept and embrace those who have different abilities than we do.



As a parent, I can say I would rather my child be in a day program volunteering (and thereby giving back to society), then to be working for a $1.50 an hour at a sheltered workshop. It is the ultimate slap in the face. And I find it appalling that our society is okay with it.

And for the record...I am offended by the comment of the previous poster. You may not agree with "parents", but to say that is why we need laws is ridiculous. I will always have what I feel is my child's best interest at heart. Whether someone who doesn't have a child agrees with that or not is irrelevant to me. Live it, then talk at me or us if you will. We ALL have a right to our opinion...including you.

 
At March 7, 2013 at 1:31 AM , Blogger DD Advocates said...


Wow - as a parent of a young adult who needs the supportive community setting of the ICF/ID (The LEAST restrictive environment for him) I am constantly taken aback by those who think that my son and others who may have the same intense support needs are segregated, isolated and not included.

I would love to meet you, introduce you to my son, take you to visit his home and for you to hear what he has to say about it. . You may be very surprised. Please contact me and I will arrange a visit.

The simplistic and ignorant view that Anonymous wrote on February 16, 2013”
“That whole paternalistic "we know best because we're their family" attitude is why we need laws” is offensive and indicates that this person is unaware that we do have laws - see the Washington State Superior Court Guardianship information and also see this link for more information regarding caring for the incapacitated person. http://becausewecare1.com/2013/02/02/incapacitated-person-by-law/ This information may enlighten you regarding the issues more fully.

Yes, in years past, there were many who were placed in the institutions - most should never have been there in the first place. Sheltered workshops that make people sit and does piece work is inhumane and should not be but has anyone really gone into a sheltered workshop such as this in the past 15 years?
If so, I'd like to know where and when. Please contact me so I may visit these too.
There are benefits to "sheltered workshops" and I know the one that my son goes to when he is not in school is totally set up for what he can do and is individualized and he gets paid for the work he does - if he chooses to dance around and listen to music and chat with everyone and does no work - well he doesn't get paid - But then again, he has no concept of that so if one was going to try to make him do "work" to get paid it would entail torture for him and the person whose job it was to be his "job coach"

My definition of community is belonging, participating and contributing and there are many routes to go about this.

The law states that people have choice and we need to honor that choice. For those who are unable to make safe choice themselves, the law has a defined guardianship to address this and in this case the guardian is the one who would make the choice. The guardian acts as the person. This is the law.

 
At April 2, 2013 at 1:38 AM , Blogger kurt black said...

Segregation should be a forgotten word and should exist. In my mind the disabled people that I know are on a level way above me and I have the up most respect for them.

ss disability medford

 
At May 17, 2013 at 12:43 PM , Blogger Griffin-Hammis Associates, LLC said...

Well said Dale.

 

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The Problem with Pro-Inclusion but Not Anti-Segregation



I recently gave a speech at a conference, and afterwards was approached by an individual who had a pointed criticism of my talk. "I support your message of inclusion, but why do you have to argue against facilities? Most of us work in these places. They will eventually change and workshops and day programs will just disappear if we do a good job with inclusion."

His point was that we can change things without negativity. We don't need to highlight the problems, just highlight the better solutions. And once we start getting people jobs, better homes, and more community support, more traditional programs will evolve. Agencies will no longer need or use facilities. He concluded his argument, saying that worrying about facilities just takes up too much energy and disrupts the field.

So, can inclusion of people with disabilities be promoted without fighting to end existing segregation?

Sadly, no. And the evidence against "waiting for evolution" is persuasive.

First, think about other social movements. Consider the long struggle for racial equality. Nearly 150 years of effort has demonstrated you cannot obtain civil rights without acting to end segregation. You cannot leave people in their isolated homes, schools, workplaces, and busses, and as we offer opportunities, hope the old paradigms will fade away. They didn't and they don't. It took legislation, civil disobedience, media exposés, demonstrations and more to get closer to inclusion. It took active work against segregation.

It is really no different in any social movement, including the disability field. For instance, the number of institutional residents with intellectual disabilities has declined steadily the last fifty years, but nearly all of this is due to class-action lawsuits. In other disability service areas, segregation actually seems to be increasing. Recent studies have shown steady gains in the use of facility-based work. Also, "non-work" programs have increased dramatically. Despite increases in supported living and employment in terms of pure numbers, the percentage of inclusive programs relative to all services haven't gained at all in the last 15 years, and the gap seems to be widening.

A great illustration of this is supported employment. Segregation has not "evolved away" in vocational services despite 30 years of job placement success of people previously considered unemployable. Serious change will require (yes, require, as in limiting choice) phasing out common practices of today, including sub-minimum wage, facility-services, group employment models, congregate housing, institutionalization, and other obsolete models. 

I think muting criticism of facility-based services is exactly the wrong thing to do, painful as it is to hear. We don't have to belittle agencies or the people who work there. They work hard and are dedicated to their jobs. But we must continue to forcefully speak out against the continued needless segregation of those with disabilities. Too many people verbalize how they are “pro-inclusion,” but then they do nothing to act on segregated programs and practices within their own agencies.  

It's not enough, for example, to say you want "Employment First," without also pointing out the workshops must eventually close. Social change also does require demonstrating a better path and not just griping about what's wrong. But it also must include criticizing ineffective practices that are not working to evolve, and speaking out for justice when it isn't given. Let's stop wasting people's lives now, while waiting for some future fantasy evolution to come. Make change happen today.

Labels: ,