Illinois Nursing Home Residents with Disabilities File Suit

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.

On the Road in Iowa and Kansas

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.

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

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 is a Given, Not Line to Cross

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.

The Fallacy of Low Productivity: Why People with Disabilities Are Relegated to Segregated Facilities at Low Wages

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.

35 Year Anniversary of the Lawsuit that Helped Close Willowbrook

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...

Does Inclusion Restrict Choice? Or Does It Offer More?

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.