Why should I care about the Olmstead Act?

I write this piece with a very fearful heart that is also angry and sad. Many people don’t know or understand the significance of the Olmstead Act, so let me break it down so you can understand.

The Olmstead Act is a law that was passed just 27 short years ago. It was written hand in hand with the Americans with Disabilities Act (ADA). It states that people with any disabilities are no longer forced to live in what we now call developmental centers, but back in the day, it was called asylums, state schools such as Willowbrook State School. (Go research the video of Willowbrook, the last great disgrace on YouTube. Then you will understand our fears better.) And that people were now allowed to live in communities with support from agencies like ARCs or Lexingtons. It created more jobs and saved the state/country money.

” The Supreme Court held that people with disabilities have a qualified right to receive state-funded supports and services in the community rather than institutions when the following three-part test is met:

1. The person’s treatment professionals determine that community supports are appropriate;
2. The person does not object to living in the community, and
3. The provision of services in the community would be a reasonable accommodation when balanced against the needs of those of other similarly situated individuals with disabilities.”

This very law said that people with disabilities have the right to live and be seen in the communities. As a person who has a disability, this has shaped my life, but now, here we are many moons later, and we are once again being “pushed back” into a broken and quite scary system. It shows that individuals with disabilities are still not and possibly will never be seen as human beings or equal, at least to some people.

If this changes, this will not be a “simple” setback; it will be a catastrophic death sentence. Science has shown that people in community-based settings live longer and more productive lives. Another question we need to think about is this: if all the people with disabilities are placed in one setting, are they getting what they need as individuals, or are they getting the bare minimum of what everyone thinks we need? Are they giving everyone the same support, or are they giving support that each person needs?

Let me give you a picture of what I’m talking about. My needs: I have epilepsy. It keeps me from driving. My seizures are triggered by stress and temperatures and flashing lights. So, red flashing stop lights can and have caused me issues. As well as the temperatures, if I have to walk in it. So if they “force” me to move into their “community” for us. Will I still get the ride I need to appointments and be able to run errands when I need them? Or will I have to wait for the day when they take everyone out for shopping or see their doctors and not my own? And let’s say Lucy’s needs are significantly different challenges and needs. Lucy needs around-the-clock care and needs help with feeding tubes and everyday functions. Will the treatments or supports be what I need SEPARATELY from what Lucy needs? Or everyone gets the same level of support; nothing is separated or personalized. We decided what we feel you should have and what support you will get. You all take showers on this day, you eat the same dinners, no exceptions, etc. Sounds more like control than care. (and a quick reminder that we have already been through this many times in history)

But we are also missing another piece. Employment. The staff that works with us works for each person’s needs and has MANY skills, not just nursing/health skills. (Not judging any role, they are all important) But are they going to keep the direct staff who may not be able to pass meds or have no medical backgrounds? Most likely no. If everything gets the same basic level of services, then why do we need specialized staff? Again, this has happened before. Here in New York, we had several, and one of them was named Willowbrook.

Right now, it’s just “in the talks,” but we have seen that in our government before. The fact is, there are people who twist laws, money, and language to get the outcome they want. In this case its to take the disabled community and make us more handicap then our disability actually is. Power is knowledge, and now you know what is really at stake, so what are you going to do about it?