Simple, Respectful, Systems-oriented: Work with people who are MR/DD, Head Injured, or Communications-Impaired

Mary Jeffery Stevens, LPC, LISW

Lilley & Associates

1910 Crown Park Court

olumbus, Ohio 43235(614) 457-8359

The other day a man was signing to me the story of how he fell getting into the shower because his roommate had left water all over. He told me about it several times and in pretty great detail. He went to the hospital because he hit his head and he got medicine for his back. I talked with one of his aides and learned that this had occurred about six weeks ago. The meaning of the story changed.

A young woman who really wants to have sex with her boyfriend talked with me about how she might talk with her "team" of providers about being able to have some time alone with him.

A 30ish man lost his mother. In addition to his grief, he has to cope with moving in with a roommate and a staff of various people. His mom "did everything for me," but now he is expected to do a variety of chores.

A 60-something woman is tired of all the people who tell her what to do. Sometimes she cusses them out or threatens them.

One man who came for counseling had a residential provider who made the initial referral but was not the case manager who could authorize funding. Neither was a direct care worker who could provide behavioral observations or recent history. And none of these three was the guardian who could authorize treatment. These are real situations that hopefully exemplify issues in working with people with cognitive disabilities. The emotions are fairly universal; empathic people easily grasp that. But many other elements of the work are different than traditional crisis intervention or counseling. A more active role is called for. Often people are not able to verbalize the emotions and the worker must help with finding words (or gestures, signs, metaphors) without being overly suggestive. Some moderately to severely impaired people are so eager to please or so confused they will simply echo the last thing you said.

Feelings may prevail while difficulty is present in terms of describing the facts. It may be difficult to locate the person(s) who can tell the whole story. Once they tell the story, it is necessary to ascertain what their role and interests might be. For example, parents might describe their handicapped daughter's behavior in a very different way than her workshop instructor might describe the same behavior.

One of the other characters in the story might in fact turn out to be the focus of the intervention. For example, I work with a woman who is mentally retarded and has a mental illness. Symptoms, including hallucinations, persist despite her medications. Approximately half my time is spent with various staff members coaching them on how to handle her illness. In another situation, I needed to talk with staff and ultimately various administrative people as staff behavior routinely escalated a client's acting out.

Less dramatically, I've had significant others sit in on social skills or anger management groups so they can help keep the client's learning fresh during the week.

With the person, a directive and educational approach is often needed. It is usually necessary to break the problem down into small pieces and to generate simple, fairly immediate solutions. For example, a woman who was sexually assaulted in the past continued very scared. We practiced saying "stop that," then practiced yelling it, then corralled various male colleagues so she could practice yelling at them. Then we did it some more as learning is not automatically generalized across situations and emotional states.

Modeling, shaping, rehearing and reinforcing are behavioral terms that describe many of the interventions with cognitively impaired people.

Not all, though. A humanistic, supportive stance can be extremely healing. Often people with disabilities have been infantalized.. It's important to validate feelings and support expressing them appropriately. Too many times, I've asked a mentally retarded person "When you're mad, is it OK to say words?" and had the response be "No." I's necessary to literally give permission to say certain words, to cry, to withdraw at times.

Finally, advocacy is needed. Disabled people often have families and/or other systems controlling major portions of their lives. Even well-intentioned workers can get caught up in systems issues or resource problems and fail to act in the best interest of the client. Communities may need to be educated and coached to make more resources and better treatment routinely available.