Frontline Initiative Self-Determination

When my son David went into crisis as a teenager with Prader-Willi Syndrome, Essex County Association for Community Living (ECACL), a provider agency, did everything possible to accommodate him in their residential program. He moved to a group home where three others (two men and a woman) with extremely challenging behaviors lived. The woman, who also had Prader-Willi Syndrome, and David caused the bulk of the serious occurrences at the group home. They fought, stole, manipulated, and conned. They were like gasoline and lit matches together.

A year later in 1994, David told us at his annual support meeting that he hated the group home and wanted to move to a house of his own where he could live a quiet life with one roommate. He called it his dream. I called it my nightmare. What we had for him was far from perfect, but we thought it was the best we could ask for a young man like David given his behaviors and his problems with food. I developed a case of “parental what-ifs” —

• What if it doesn’t work out and his spot in the group home is taken?
• What if he and his roommate don’t get along?
• What if he has a blow-out and the lone staff can’t handle him and care for the other fellow too?
• What if the neighbors don’t accept these two individuals? And on and on.

Fortunately, David’s direct support staff listened to him and assured me that it could work for him. Shortly afterwards, I received a call from ECACL inviting me to go househunting for him. The staff was confident and excited about David’s new life and how well it was going to work out. Their confidence and enthusiasm was catchy. I eventually found myself looking forward to his new house and not focusing on the “what ifs.”

ECACL proved to be creative and resourceful in meeting David’s needs. They found him a house where he and a roommate could pay the rent and expenses themselves. They would share an afternoon staff and a sleep-over staff five days a week. During the weekdays they were at their workplaces and each weekend both would go home to their parents. A friend of David had been on the waiting-list for housing, so this was going to work for them, and it was going to save the agency a great deal of staffing cost. David’s dream of having a house became a reality.

David’s primary staff came with him. She was already supporting David on his behaviors. Having developed a kind of Doppler radar, she taught him to leave the situation that made him angry well in advance of a storm and to pound his pillow in anger. Afterwards she taught him to voice his frustration and anger, a technique called “using my words.” It was not an easy feat, but in time he would point his index finger at us all and yell, “I’m pissed off and I am USING MY WORDS!”

This natural approach to supporting David had some setbacks. David learned to play staff at his home and work against us, his parents, and vice versa in an effort to get more from everybody. For example, when he was at our house he would complain that we weren’t feeding him enough...that his day staff gave him “monster portions” and let him rent slasher videos.

Everyone in David’s life (e.g., staff, we) agreed that David should have more control of his life, so we formed a team with him as our captain. Every Tuesday we meet at his house after work to discuss what is on his agenda, give him praise, and deal with the issues. With David at the lead, he communicates his wants and needs and we all are better able to support him. We still hold Tuesday meetings and feel they are the glue that keeps it together. After only three months, he calmed down and has been mellowing and maturing. Disappointments that used to send him into a major blowout now only get a question or two and then a shrug of the shoulders. He is a walking miracle. He is, today, after four years in his house, nearly 23 years-old and a fine young man. He is a well-respected member of his community. Every person is different and needs to be respected and heard. Every person needs to have a peaceful environment to come home to each day. Every person needs wings. I cannot thank David’s frontline staff enough for taking the time to learn about his needs and his strengths and for doing person-centered planning. These professionals were determined and extremely creative in their attempt to help David live his dream. He was not stuffed into a program and expected to fit. Instead, the program reflects his desires and needs — it’s alternative rock, a shaved head, leather jacket and the backwards Newsboy cap, weight lifting, lap swimming, Nike basketball shoes and working extra hard to earn extra money for a train trip, and self-esteem that won’t quit! All this didn’t just happen by accident. It has been encouraged and nurtured by people who care, DSPs, family and friends.