Self-Determination for Individuals with Significant Cognitive Disabilities and Their Families

Abstract

We write this article as parents of our 33 year old son, JT, who has significant mental and emotional disabilities, and as professionals the field of developmental and mental health disabilities. We write about self-determination, a value that we practice our own lives and a value that we want JT (and our two daughters) to practice theirs. In short, we want to take control of our lives an independent fashion. We want JT to do likewise and we applaud the way our daughters have done so. But with JT, unlike ourselves and our daughters, taking control, being self-determined, is a curiously lived value. To continue to honor his obvious choice to live in my own we have just purchased a different house for JT (he had been living another home of his own for 11 years) that would enable him to live with primary and weekend housemates who would provide support 24 hours a day, 7 days a week. The house has two separate living areas and is over 3,000 square feet. When we asked JT how much the house cost, he said, $1.00. When we asked him what he thinks about it , he answered, Nice. When we asked him whether he wanted to move back to our family home, he said, No. When we asked him what is necessary to maintain his house good order, he said, Work. Our probes of his meanings were no more revealing than his original answers. Because they reveal so dramatically aspects of his cognitive disability and the functional limitations that attend it, JT's responses provide a context for discussing the role of families supporting the self-determination of individuals with significant cognitive disabilities. The issues are manifold: What does self-determination mean for people whose limitations are like JT's? When, how, and how much can and should families recede quality of life decision making from their children or other members with such disabilities? These and related issues challenge us as parents and as professionals. We write