Part of a Whole

My name is Nicolas Steenhout.
I speak, train, and consult about inclusion, accessibility and disability.

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And They Wonder Why People With Disabilities Feel Oppressed?

I was told yesterday that the State of Illinois has cut funding for an important programme for people with disabilities. This programme is known as the "PA Program", or "Home Services Program". This news devastated me, and angered me. My colleagues and I worked so hard to make that programme work.

My friend wrote:

Things are bad here. The governor has completely cut the P.A. program across the state. X is out of a job. I truly feel ill. I feel like all the hard work we did is being shit on as we regress.

And gave me a link to an article: State cuts may force disabled into nursing homes

The PA Program

This programme is vital to many people with disabilities. PA stands for "Personal Assistant". PAs help people with disabilities with tasks of daily living, such as cooking, eating, bathing, dressing, house cleaning, etc. The PA Program funded by the State but run by Centers for Independent Living (CILs) has helped people with disabilities develop the skills to know how to hire & train their own PA, kept a list of available PAs for people with disabilities to access, matched PAs with people who need assistance.

During my 4 yearsas Program Director of Progress CIL, the PA Program was quite active. We recruited individuals who were potentially suitable to be personal assistants, gave them an orientation to PA work, and tracked their information. We also worked with individuals with disabilities to help them develop their own skills at hiring, training, managing, and in general work with peronal assistants. We matched people and did referals. We also provided peer support, an important element of the services offered. Because several of our employees were PA users themselves, they had a real understanding of the needs of people seeking services.

Centers for Independent Living (CIL)

CIL are non-profit, non-residential service and advocacy organisation operated by and for people with disabilities. The majority of these organisations are in the United States (>600 I think), many are in the United Kingdom and other countries as well. For a listing of CILs, please visit IL USA.

Major Staff Cuts

The loss of funding for the PA program means that CILs will have to cut staff. LIFE CIL in Bloomington, IL, will have to let go of one staff. Considering they were starting with 6 employees, losing one is a significant loss. Progress CIL will have to let go of nearly one third (1/3) of their staff! That is a major problem.

Considering that these employees have disabilities themselves, and that there already is an unemployment rate in the United States of approximately 70%, it’s hard to fathom how anyone could see this as a good thing. Of course the PA Program is not about giving people with disabilities employment. But as a side effect, this job losses are devastating.

Impact on People With Disabilities

Without the PA Program, people with disabilities will see their ability to get personal assistants greatly reduced. It is difficult enough as it is with the low wages funded by the State (often lower than one could get working in fast food restaurants). But without the assistance of CIL staff, it will be near on impossible. Progress CIL helped thousands of individuals with PA related matters. With the other 20++ CILs in Illinois, the number of people with disabilities who were able to retain greater independence because of the service will see that level of independence drastically reduce, if not disappear entirely. The choices and self-determination consumers of PA services had will also decrease drastically.

It is not an exageration to say that many of these thousands of people will end up in nursing homes because of the funding cuts to the PA Program. And as I’ve chanted often enough at disability rights protests: "I’d rather go to jail than die in a nursing home".

Life In Nursing Homes

Why would I rather go to jail than die in a nursing home? Because the living conditions in most US nursing homes are beyond horrible. I acknowledge that I am generalising and that some of these institutions are better than others. But I have not seen many "public" nursing homes (as opposed to those where you have to pay tends of thousands of dollars each year) that were decent.

The first thing that struck me the first time I went to visit an inmate in a nursing home was the stench. The entire place smelled of stale piss, with an overlay of strong disinfectant. Then I noticed the hagard and desperate look in most people’s eyes. The staff was overworked and underpaid. They didn’t really care, but if they did, there’s not much they could do to provide the right level of service to every nursing home residents (whom I shall henceforth refer to as "inmates").

When we think of nursing homes, we imagine elderly people. But the last statistic I remember reading out of the US is that 14% of nursing home inmates are below the age of 40. These people are stuck in nursing homes for the simple "crime" of having a disability, and having no resources to live on their own. For instance, not being able to hire and/or fund a personal assistant.

People in nursing homes tend to be on benefits – SSI or SSDI. Their income doesn’t suffice to cover the cost of keeping them in nursing homes. So it is almost entirely taken by the nursing home management. In fact, the benefit payments were made to the nursing home, who then gave the inmates about $30/month for their incidental expenses.

I remember cases where the nursing home management also took people’s identification papers and refused to give them back.

It was a bit like "Hotel California", you knew when you checked in, but you never leave… With all of your income but $30/month disappearing, there is no hope you’ll ever be able to raise the funds required to pay a security deposit and first month’s rent on an appartment. Nor furniture. But that doesn’t really matter, since you couldn’t do so anyway, because your ID papers have been taken by the nursing home. Which means you can’t get a bank account. But that doesn’t really matter either, as the nursing home is receiving the benefits payments and switching that away from them is a bureaucratic nightmare at best.

The nursing home system is firmly biased towards keeping people in. And that in horrible, unlivable conditions.

Related Program: Community Reintegration

One of the programmes that ran paralel with the PA Program was the Community Reintegration Program. This programme actually helped people stuck in nursing homes with things such as first month’s rent, basic furniture, learning the skills to find an appartment and actually move out. Obviously a major aspect of this programme was related to PA work. I remember vividly the success stories, and the lives changed positively. We also ran a similar programme when I was Executive Director of LIFE CIL in Savannah, GA.

It isn’t enough for people to move back in to their community. They must be part of the community. Otherwise they can only increase their sense of isolation. The work CIL staff did, and continue to do, is a key factor to ensure the move is successful.

A Question Of Cost

The really interesting thing here is the comparative costs of paying for someone to be in a nursing home compared to funding the same person to live in their own home in the community with full time PA support. My numbers are outdated, I’m sure, but from what I remember, it cost the State approximately US$45,000/year to keep someone in a nursing home, whereas the annual cost to the State to fund PA Assistance at home is about US$15,000.

You do the math. Why would any legislator keen to balance their budget prefer to give $45K to the nursing home industry when they could use that money to assist 3 people live in the community?

Community Reintegration In New Zealand

New Zealand actually passed legislation a few years ago mandating all institutions for people with disabilities to be closed, and the residents moved into the community. I heard of this when I arrived in New Zealand. At first, I was simply amazed at this "enlightened" step by the NZ government. Coming from having fought for years to help people out, often banging my head against the brick wall of a government’s bureaucracy, this appeared to be a refreshing change.

Alas, things aren’t as good as they appeared. Yes, the last institution shut down last year, and all residents are now in the community. Some are living on their own, some are living with a few other ex-residents. They are IN the community, but rarely are they PART of the community. There’s no real improvement for these individuals. Plus the level of service has dropped in many cases. For example, I am aware of several individuals who have been unable to receive the dental care they required since being shunted out of the institution.

A good idea was enacted, but poorly done. The appropriate resources were not provided for true success

Further, the indiscriminate move of individuals out of institution was cruel in many instances. While I am a firm believer in the right of people to not be locked up in nursing homes and other institutions, I also believe in the right of people to stay there if they so wish! The experience of moving out was traumatic for many people who were institutionalised when they were children, and forced to leave the only place they’ve ever known or thought of as a "home", when they were in their 30’s, or 40’s, or 50’s.

Funding Cuts In New Zealand

There is a wave of funding cuts happening in New Zealand. Some of the most obvious cuts are happening in the health area and in the education area. It seems like the government’s thinking is that if you aren’t a "fully productive" member of the community, you shouldn’t be receiving the level of services those who are employed/employable enjoy.

Of course, this means that people with disabilities and the elderly will be hit harder by these funding cuts. This creates a viscious circle. Without the ability of receiving health services or proper education, people with disabilities are unable to hold a job. Yet if they did receive proper level of support, they could, and would prefer to, work and be a "productive" part of society.

The kind of funding cuts happening in Illinois are but an extension of the kind of attitude that has led to the funding cuts in New Zealand.


The sentence that comes to mind is "Penny wise and pound foolish". Both Illinois and New Zealand governments are ignoring the long term view, focusing on the immediate spending. Each government department is looking at their own little slice of the pie, ignoring what others’ budgets are.

When I injured my shoulder last year, I received some physiotherapy funded by one government agency. Even though my shoulder wasn’t healed, they deemed that I had received enough physiotherapy. Without a fully functioning shoulder, I was not very far from being unable to dress myself, drive myself to work, etc. This means I could have lost my job. Without a job, I would have had to apply for benefits. How shortsighted is it to deny a few hundred $$ expense for a service that helps someone remain employed?

What now?

Advocates will fight as hard as they can. It’s a bit like nailing jell-o to the ceiling. Very difficult, and somewhat pointless. People are likely to lose jobs. More people are likely to be unable to remain independent and will end up in nursing homes.

People with disabilities are being shafted under the guise of saving money. Analysis of such "savings" show that there’s no savings.

And you wonder why we feel oppressed?

5 thoughts on “And They Wonder Why People With Disabilities Feel Oppressed?

  1. This is an excellent critique of all that is wrong over here, so thought-provoking! My only positive thought is that at least we have a voice in people such as yourself. Cheers and thank you!

  2. Gosh, where to start? You made a huge point–in the community but not a PART of community–that’s the huge fall out from the cutting of funds plus the closing of institutional type facilities. No doubt we need to move to community based homes–but boy-oh-boy do we need two things: more funding, and more people who treat people with disabilities as valued, equal people.

    You are so right, the short-sighted cuts in funding really hurt and don’t save us money–they create long term problems that we all have to pay for because we take away independence and access.

    Wish we could cut the pork programs, like the recent grant for $100,000 to “study” the issue of accessible transportation in my county. Screw the study, use the funds to PROVIDE the transportation.

  3. I was the second person that over 10 years ago Progress Center for Independent Living was able to use the Community Reintergration Program to allow me to leave a nursing home and re-enter the community. This program must be allowed to continue.Most of the persons in a nursing home who are medically able to live independently want to do so. This year I was able to asiist with the creation of Public Acts 96-0477 and 96-0650. These two Public Acts if enforced correctly will be of great assistance to individuals with disabilities. Had I been in the nursing home I could not have done this.Persons who re-enter the community from a nursing home not only live in the community but also contribute to the community and appreciate the community accepting them and seeing if they can help them, they do not however need to be pitied.

  4. I was reading a free newspaper in Colorado last week which explained that in order for the Colorado disability programs to be in sync with the US requirements people were going to lose access to the needs that were currently being met and the cost for everyone – including the disability programs and the government would increase. Very sad.

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