Tuesday, October 23, 2007

Forced "Fun"

My last job was working in what is commonly called an ATE. This stands for Alternative To Employment. These programs provide recreational, social, and inclusive opportunities for people with severe developmental disabilities. Generally an individual will attend an ATE for 20 to 25 hours per week. It’s usually a Monday through Friday schedule during the day. At our site we would usually have 10 people in the morning, and another 10 in the afternoon. There were four of us working with them.

When I wrote “severe” disabilities, that is a very accurate description of the folks we worked with. Many had very little expressive or receptive communication skills. Many were incontinent and needed to be changed each day while they were with us. Many needed to be fed their snack, as they were unable to feed themselves. Many used wheelchairs or needed help with mobility. These are people who require a lot of assistance with most things non disabled people take for granted.

The idea is that folks attending ATEs have chosen to go there. Yearly they have meetings where case managers, residential providers, family (sometimes), vocational providers, and rarely a friend or advocate, get together with the person to figure out what they should do for the next 12 months. Employment is always discussed in these meetings. If a person’s disability is profound enough to keep them from having a job, they are offered a spot in an ATE program. and if they are able to communicate that they don’t want to work, they may also opt for an ATE.

The problem is that there are some folks who are unable to work, and don’t want to attend an ATE. These people are usually the ones I mentioned who have very little communication skills. They don’t get to choose if they WANT to attend an ATE, they are assigned one. Where I worked we put a lot of thought and energy into showing our folks a good time, while being mindful of health and safety issues. We had a fun site. There was always music playing, games being played, arts and crafts being done, people coming and going into the community, and laughter in the air. Unfortunately, some of our folks obviously didn’t want to be there in spite of our efforts.

In the morning there were 3 people who consistently demonstrated through their actions that they’d rather be somewhere else. One would tear at his clothes with his teeth and would often cry and wale. He is unable to talk, sign, or even gesture to communicate. We all knew he didn’t like it. Another man would come in the door extremely angry. He’d pace around clapping his hands hard, hissing, knocking things off tables, and clearly showing his displeasure. He too lacks communication ability, and we knew he would be happier elsewhere. A 3rd guy would scream, spit, and stomp his feet in a tantrum. You guessed it... low communication, and we had to assume he didn’t want to come in. In the afternoon we had a woman who would scream daily. The only thing that might or might not keep her from doing this was playing loud classical music right next to her. That would usually work for a short while, but she’d always make her point that she didn’t want to be there by screaming. Of course it was her only communication.

Why were these folks there if they were showing that they didn’t want to be? There isn’t a simple answer to that question. There are actually a few different reasons:

1.) Group homes and foster homes often can’t afford the number of staff it would take to allow a person to hang out at home. In Oregon they are woefully underfunded. Generally, each person who lives in these homes gets out of the house 5 days per week to work or attend an ATE. It’s a staffing problem.
2.) Contracts. Vocational agencies depend on these folks attending their ATEs to keep their businesses afloat. If people stop coming, they lose money. If they lose enough money they go belly up. It’s a business problem.
3.) Misplaced values. There are some great human beings working with people who have developmental disabilities. However; there are people on all levels, from direct care, to management, to directors, to DHS who would actually serve these folks best if they left the field. They see these folks as a commodity, in place to ensure livings can be made, and careers can be grown. It’s a mindset problem.

What to do; what to do... I think the place to start is by getting people to truly understand that it’s wrong headed (as well as unethical) to make a person do something they don’t want in order to preserve a system that doesn’t work anyway. The people in a position of negotiation with funders need to demand more money for these residential programs so they can afford the staff they need. Vocational programs need to expand and become more viable in the community. In this way, they can truly provide quality services without fearing implosion due to money concerns. People need to recognize that folks with disabilities’ civil and human rights are not really being protected in this state, and it’s time to make sure they are.

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