Frontline Initiative Communication

Dear Friends—I have Cerebral Palsy. I speak, but it is very (much) trouble. Sometimes people cannot understand me. It is hard, but I keep on trying. I have been like this all of my life. Communication is frustrating, not fun. Doctor visits would be better if I could communicate more. For instance, they gave me a new medication last March, and it made me sleepy all the time. I took it for about five months; I had trouble telling the doctor. Having no way to communicate made it difficult to tell the doctor. — Julia

I first met Julia in the fall of 1989 while doing communication evaluations for an agency that provided supported living opportunities in the community. The result of that evaluation had been a recommendation for an electronic communication device. Julia was bright and persistent in her efforts to communicate, but was dependent on familiar listeners to interpret for her. She had shared her desire to write a book and it was clear that she had much to say. It was almost two years before the recommended device was obtained.

I have feelings just like anybody. I like to be treated like anybody else, like any other adult. Just because my body doesn’t work like “normal” people’s bodies, doesn’t mean that my mind doesn’t either. I think the same things as everybody else does.

To those with communication barriers associated with sensory, motor and/or cognitive differences, simple tasks like telling the doctor how you feel may become impossible. Many individuals with communication barriers are dependent on family and professionals to develop functional communication systems for them. Too often, when systems are not developed, they do not grow and change with the consumer, or they fail to reflect the consumer’s needs, preferences, and abilities.

When I first called Julia to discuss the possibility of co-writing this article, her personal care attendant relayed my message to her. She replied that she would like to be involved and invited me over. I arrived at her door and found that she had been without her communication device for the last six months, and Julia was again relying on staff to interpret for her. Julia knew the agencies and people she needed to contact, but was unable to do so. Without her communication device, she had no way to contact the appropriate people and tell them that she could not communicate— the proverbial Catch 22.

I need to communicate so I can get a job. That’s like a dream. I have to save my money to buy glasses, but may need to buy a power wheel chair. It is hard to do when you have to pay bills and help buy the food and then buy clothes. If it’s not one thing, it’s another.

Julia is not unique. She is more like everyone else than different. Unfortunately, she doesn’t have an easy way to express herself. Everyone communicates in some way. The current strategies and the available technology make effective interaction a possibility for everyone. Age is not a prerequisite for communication, nor are cognitive, sensory or motor abilities. While there are no prerequisites to communication, there are often barriers. It is critical for Direct Support Professionals to recognize the need for consumers to communicate, to provide the opportunities and means by which they can communicate, and to support them in order to maximize the effectiveness of the existing communication. Helping people communicate should be a DSP’s number one priority, because without the ability to communicate, there is no way to provide meaningful supports.