Tom Pomerantz came again to our agency to bring us some more of his ideas in how to support people with intellectual disabilities. At the same time, I am reading a book along the same lines - Learning to Listen: Positive Approaches and People with Difficult Behavior by Herbert Lovett. Both authors argue very effectively that we are looking at people with disabilities with a worldview that is incorrect. We think of them as children, incapable, and challenging when we should be thinking of them as people like the rest of us. And if they exhibit a behavior that is troublesome to themselves and others, it is not because they have a disability, it is because of the pervasiveness of how we treat them and further because of unmet needs based on the type of life they lead.
I wrote in Game-Changer http://www.blogger.com/blogger.g?blogID=4082941367652166326#editor/target=post;postID=3355530986177311286 that we have to start supporting people completely differently than we historically have. First, though, we have to change our view of people with intellectual disabilities.
Through the years, I have been taught that individuals with intellectual disabilities act out because of their particular deficits. The new way of looking at things is that they act out because the system they are served in is flawed and they don't have opportunities to live the life the rest of us do. They are deficient in being offered a high quality life, not deficient in cognition and communication, and behavior control.
I have been taught for over 20 years that people with intellectual disabilities exhibit problematic behaviors (the new term is "interfering" behaviors, per Tom) for four broad reasons after you have considered whether a medical issue is going on. Attention, Escape, Tangible, and Sensory. We have never changed that theory in all these years, even though it is demeaning to think of people with disabilities as somehow different from others. When they cry, often we think that they might be 'attention-seeking' whereas when I cry, I might just need to talk to a friend.
The new view has us stopping to ask the question, "What is their unmet need right now and how can I help them meet it?" And to stop asking, "How can I get them to stop misbehaving?" This is a huge difference in how we have been supporting people with intellectual disabilities.
Here's an example of how the new view might work. Say you have ten adults with varying degrees of intellectual disabilities in a classroom setting for their day program. This is fairly common that we provide habilitation services in a group setting much like a school. Let's say one of those adults has a difficult time sitting in their chair all day, or is not interested in the activities planned for that day, or is overwhelmed by loud noises, or is thirsty but does not have the skills to express it. How he decides to meet his need is to get up and walk out of the room, looking for relief from his distress. We would then determine that he is exhibiting escape behavior and come up with a plan to help him stay in his room. The plan might involve earning a certificate, offering a glass of water, escorting to an area away from others in order to relax, teaching him to ask to leave the room by some sign or gesture instead of just walking out, asking him to sit down before talking with him, and so on.
Instead of asking, "How can we keep him in the room?" we will now ask, "What does he need?" On the surface, the new question seems easy but this is where we actually have to make some tough, honest decisions. He doesn't just need a drink of water and a break from the noise. It goes deeper. The new questions are: Does he need to go to a small room every day for the rest of his life to learn skills? Does he need to stay in that room for 6 hours everyday and be expected to display quiet, conforming, compliant behavior? Does he have a need for a coffee break and cookie like the rest of do when our energy lags in the middle of the morning or afternoon? Does he need to feel productive, making a contribution to his world? Does he need to have more status in his life?
Could any of us adults spend our day in a classroom setting being told what we are going to learn and do? Could we cope with loud, unpredictable noise and crowding day-after-day for 40 years without being able to find a new career if we wanted? Could we deal with other people (staff) around us drinking soda, coffee, eating fast food while we are told we can't because it's not a healthy choice?
While the individuals at our day program and group homes are treated very well and have wonderful opportunities, it is still not enough because it wouldn't be enough for you or me. Now that we realize this, we can do better.
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