Betsy MacMichael: One-on-one support can be helpful -- or isolating

By Betsy MacMichael : The Herald-Sun
desmac@intrex.net
Jun 5, 2003 : 11:36 pm ET

DURHAM -- Support for people with developmental disabilities usually refers to human support, whether paid direct support workers or buddies at camp or school. Such support can be helpful, or it can hinder the person’s participation in their community.

The good news is that our society welcomes people with disabilities more and more. The bad news is, there are often strings attached: one-on-one support is required. Ask a parent of a disabled child how many times they have heard, "Your child is welcome, if they bring someone." That is a bland way of saying "aide," or "one-on-one," or the most recent term I heard, "chaperone."

A friend made an observation about her teen-age son’s experience in an inclusive public high school. His ever-present adult aide has become an excuse for teachers not to learn how to communicate with him. His support also creates an unintentional barrier between him and the other students. Why would another student offer to push his chair around, when his aide is there, neatly covering that need?

When everything is taken care of, nothing is left to the community’s imagination.

For my daughter, a good direct support worker is one who is not so obviously associated with her. In the long run, they should slowly and deliberately work themselves out of a job. The best direct support staff helps others figure out communication with the disabled person, then moves aside when connection and fun starts happening naturally. They are worth their weight in gold. Unfortunately, sometimes support becomes babysitting in a corner, or leads to mini-classrooms within a classroom.

My daughter Jane has had community support people for a few years, and this has been of great help, especially in supporting her academic progress. During non-school time, she has been attending the type of recreational program where typically an aide is requested. Recently, an amazing head counselor respectfully requested that we let her come alone.

"You want my kid alone?" I wondered silently.

"What about the extra help she needs?" I asked.

"We’ve got it covered," he said. Music to my ears. After a few days of camp without her extra support, Janie unconsciously picked out her own "buddy" among some older campers. The counselor’s strategy now is to help all the children see that Janie doesn’t need to be paired off in a corner with a buddy. Everyone can hang out with everyone.

I will remember this experience, where my daughter was not considered an extra burden, where care and thought helped her be more socially independent.

Since most community programs still depend upon direct support people to accompany people with disabilities, how can we help the direct support workers learn to be more supportive of true inclusion? First of all, they need better training around their role.

For a child with autism, their role may be primarily to facilitate communication and connection.

In the school setting, academic aides can be extremely helpful, but should be part of a long-term goal that enables other kids and teachers to help the child learn.

In the case of direct support staff for adults or teens, they should be culturally as similar to the person with the disability as possible and able to move in and out of the scene naturally and almost invisibly. Sometimes aides develop close ties with their clients. That is counterproductive if they end up being their only friends.

As a career field, direct support work is underpaid and undervalued. It makes retaining well-trained, satisfied people who understand their role and love their job very hard. Changing this would be another way to move toward the type of support people really need.

We hear: "With the right supports, Mary can ...," and "with a buddy, he will gain community access."

We need to be careful that such one-on-one support does not have an opposite effect than is intended. A support worker should be a means to an end, not the end in itself. The most lonely kind of community life would be where someone is surrounded by people on an island of two.

Betsy MacMichael of Durham is a parent and advocate for a daughter with developmental disabilities. She works for First in Families of North Carolina’s New Horizons Project, a nonprofit public education and awareness effort centered on disability issues. She can be reached at 781-3616, ext. 223, or by e-mail at desmac@intrex.net.