All posts by daledileo

This month marks 35 years since the filing of a lawsuit against the infamous Staten Island, NY, institution for people with disabilities, the Willowbrook State School. This action paved the way for ending decades of horrid institutionalized conditions for people with developmental disabilities throughout the United States. How far have we come since then?

In my book, Raymond’s Room: Ending the Segregation of People with Disabilities, I try to show that, today, people with disabilities are still locked away from the rest of society. Perhaps they are not in the squalid conditions of Willowbrook, but they are still living lives apart from us – in institutions, day facilities, residential facilities, and other inventions of the disability industrial complex.

Dr. Mike Wilkins worked as a staff physician at the Willowbrook during the early 1970s. He was fired for his activities to try to make improvements there. The evening of his dismissal, Wilkins used his key to give Geraldo Rivera, a young television reporter, access to the school. Rivera’s film crew documented squalid conditions in understaffed wards. The series, Willowbrook– The Last Disgrace, won a Peabody award. It sparked public outrage that lead to a lawsuit filed on March 17, 1972, and a series of changes that still affect the disability system. From that lawsuit, a consent decree ultimately led to the closing of Willowbook in 1987 and a movement grew to support people with disabilities to live their lives in their communities.

Maybe what we need is another key from an insider. At least, that is what I hope Raymond’s Room can become…

I recently received an interesting letter from a gentleman with a disability who states the he feels “very at home among the handicapped.” He wonders why I have such a stress on inclusion. Is that not “cutting off an option?” – that of being with others who also have a disability?

A fair question. I think this notion of inclusion (meaning you are taking my choice to be with other people with disabilities) is a common misperception. Integration for any minority should not eliminate the right for that minority to decide to come together – to live, recreate, socialize, marry, share, or for political advocacy. It isn’t only one way or the other.

What I am opposed to is the forced segregation of people with disabilities. (I realize “forced” is a strong word. People can of course choose to not do anything. But generally, if you want to have an education, a job, or a place to live, your options are forced into segregated ones.)

When confronted, segregation proponents usually offer a defense that boils down to several components, one of which is, well, they like their “own kind.” I remember hearing this argument used to explain why black Americans were made to go to separate schools, or ride in the back of the bus. “They like being together.” Of course people are drawn to others who share a commonality – and that can certainly include having a disability. But that is a sad excuse for restricting equal access.

Civil rights means a level playing field and the absence of imposed segregation. It also means you have more choices and diversity about where you work, whom you socialize with, or who will be your classmate.

Let’s just take the work domain. Right now, if you want to work and you happen to have a disability, for 90% of the population with severe developmental disabilities, that means a sheltered workshop. A place where only other people with developmental disabilities will be. A job match should be about several things, including your interests, skills, and where you can be most productive. A workshop provides none of this –

So does inclusion cut off an option? On the contrary, I believe it opens them up.

Here is an interesting development concerning the sub-minimum wage issue (see my previous post). Six states enacted measures last year to raise the minimum wage. Two of the six – Ohio and Missouri – included exemptions for workers with disabilities from the minimum wage provisions. The other four – Arizona, Nevada, Colorado and Montana – did not include in their laws any language that would exempt such employees from their new state minimum wage.

Now Arizona Attorney General Terry Goddard has issued an opinion stating that workers with developmental disabilities are not exempt from that state’s new minimum wage that voters approved last November in Proposition 202. The new minimum wage of $6.75 an hour took effect Jan. 1.

Goddard concluded that the “special” minimum wage authorized by the federal Fair Labor Standards Act for workers with disabilities was not incorporated into the language of Proposition 202. Employers in the state previously were allowed to pay a lower minimum wage to individuals with disabilities commensurate with their productivity.

This issue will probably be a battle now. I am on the side of the law as it now stands. Minimum wage should be for everyone – and for those individuals with disabilities who need support for their productivity, let us use what we now know through supported employment 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.

A copy of the opinion can be accessed at http://www.azag.gov/opinions/2007/I07-002.pdf

Arizona state legislators recently held a hearing to review the state’s new minimum-wage law, which provides $6.75 an hour and does not exempt workers with disabilities from minimum wage. The hearing was packed, with advocates for both sides of the issue. In the US, certain workers, including those with disabilities, can be paid less than minimum wage, unless superceded by state law which can provide for a higher minimum wage.

The federal law, called the Fair Labor Standards Act, includes a provision for a special wage for workers with disabilities. Its purpose is purportedly “to prevent the curtailment of employment opportunities.” Wages must be “commensurate with” (equivalent to) those paid to “experienced workers without disabilities employed in the vicinity for essentially the same type, quality, and quantity of work.” The wage must be tied to the workers’ productivity.

Suppose a job entails putting together a package, something the average non-disabled worker in that area does making nine dollars an hour. And suppose that the average worker can produce ten packages in an hour. Then this becomes our standard for any worker in the workshop doing the same kind of task. Except our worker, for whatever reasons related to his or her disability, can produce only one package in an hour. That means the hourly rate will be one-tenth of the norm, or ninety cents an hour.

Again, this is a topic we mention in Raymond’s Room. Workshop advocates defend less than minimum as fair, and in fact I have seen the use of sub-minimum wages as a marketing tool when appealing to employers for work. The appeal goes something like this: you can get your work done and pay only for what it is worth. But the reality is that the offer comes across like this: we have a special deal – workers with disabilities will work at 30% off!

The bigger issue is that the reason many people with disabilities earn so little when compared to a normed sample is that the work is poorly matched to their interests and capabilities. Workers with disabilities aren’t always slower by 50%, 80%, or 90% on all work tasks – it depends on the task, the person, and the job fit. When there is a gap, the first solution is to re-analyze the job, not reduce the pay.

At the Arizona hearing the arguments seem to revolve around the fairness of setting a minimum applicable to all people, versus the need for less than minimum wage in order for people with disabilities to have access to employment, due to their lower productivity. In order to reach a compromise, the state is considering designating workers with disabilities as trainees in a vocational program. Again, to me, this is the wrong solution – creating a special class of worker in order to pay them less.

The solution instead? We should work to try to figure out how to get the work supports and job tasks so that the employer gets a productive worker. It is not a question of disability, it is a question of support and job matching. Here is what I say in the book:

Minimum wage should be the minimum – by definition, the lowest you can go. If there is a productivity gap, let us work with the employer to solve it in some way so that the cost does not come out of the pocket of the person who can least afford it – the worker with a disability.

The future of changing disability segregation is with young people.

One of the most serious concerns I have about the continued segregation of people with disabilities is based on the lack of progress we have made with young adults with severe disabilities leaving school. Far too many “transition plans” still simply recommend sheltered workshops or other day programs, for example. This often is contradicted by families or the students themselves, who rightly feel that a real job should be the outcome of school to adult life.

I still get a number of requests to act as a consultant or an expert witness in such family-school disputes over transition planning or the lack thereof. Unfortunately, I am unable to respond to most of these cases.

In a 2003 study (see National Longitudinal Transition Study), only 15% of youth (13 to 16 years old) with autism, approximately one-fourth of youth with multiple disabilities, deaf-blindness, or orthopedic impairments, and about one-third of youth with mental retardation or visual impairments are employed in a given 1-year period.

Special education needs to do a better job to provide out-of-school work experiences for their students with disabilities, especially those with more challenging disabilities. The older the student gets, the more imperative it is for real world job experience.

One of the things I talk about in Raymond’s Room is how some agencies in the disability industrial complex have lost touch with their mission. This recently came to light again in Minnesota. An AP article from January 21 wrote about the Star Tribune’s investigation of Minnesota Diversified Industries (MDI). MDI plans to layoff 250-300 workers, many of whom are workers with disabilities in their workshop making around minimum wage. At the same time, it seems the MDI management staff (and sometimes spouses) are provided “executive entertainment” including parties, spa vacations, and golf outings. On one trip to a casino, the executive director handed out $100 bills to gamble with.

As I point out in the book, this kind of behavior is not typical of the system, but it is symptomatic of the incoherence of the segregated model and the rules it works under. Segregation leads to powerlessness, and this type of self-indulgence is only one of the more obvious results.

Hi everyone. Wow- writing and releasing Raymond’s Room has been an amazing journey. There is already a lot of information on the web site about who I am and what this book is all about – so I won’t explain all that here. What I would like to share in this blog is how this message of ending the segregation of people with disabilities is being received out in the world and how well we are getting the message out.

This week we sent out about 550 press releases to disability newsletters, newspapers and other media. We will follow that up with a regular mailing to about 850 media. The book is now also posted online on Amazon and Barnes and Noble. We have a press release up in our press room. Readers of this blog should feel free to access anything on the RR web site for distribution.

TRN is a very small publisher, and we can’t hope to advertise in big markets, especially with the minimal profit on this product (we priced it at $15 in the hope of reaching the public). We need to rely on network marketing through our friends and colleagues. We hope that you will read the book and that you will consider mentioning or reviewing it through any outlets you have – via newsletters, your e-mail lists, or writing an article about Raymond’s Room in any appropriate publications you have.

Also, please consider posting a comment online – people do make book buying decisions based on them. on Amazon or Barnes and Noble.

Many people have already sent their endorsements, for which we are exceedingly grateful, and we have posted them on the web or printed them in the book itself. We know not everyone can endorse the book, although that would be great, but as long as you let people know it is available, we will have hope that it will reach those who mght be open to the message and maybe keep someone out of an unnceccsary facility. Please contact Dawn Langton if you need any additional information. A story idea is attached, and further downloadable information, including a cover image, photos, audio and a text interview, is available on the Raymond’s Room website.

Thanks in advance. I really appreciate anything you can do to help this effort.