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 Article of Interest - Self-Determination

Self-Determination and Young Adults: Seeking a State of Mind

by Calvin and Tricia Luker, Bridges4Kids

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Parents of and advocates for children with disabilities know from experience how important it is to prepare their child and to help their child plan for the transition from childhood to adulthood. This transition process to full community inclusion is strongly supported in the special education and vocational service arenas. Self determination – a fundamental right for the child involved in the process – is vital to true community inclusion. Why, then, must we parents, professionals and advocates always present the issue in the worst light possible – guardianship – rather than focusing instead on the child’s right to choose, and to receive services tailored to helping the child maximize his or her decision making skills.

What’s wrong with using the term “guardian” when referring to the decision making aspects of a child’s journey to adulthood? Everybody uses the term and we all know what it means. It’s not really so bad to use it, is it? Well, consider this. Guardianship is presented to parents as the natural mechanism to be used to be sure that they can continue to be involved in the child’s adult life. In truth, guardianship is the imposition of legal restraints on the young adult’s right to make decisions for himself or herself. Using the term “guardian” to introduce decision making issues is not “people first” language. It does not focus attention on the child’s needs, but rather on the parents’ power. The word “guardian” deflects attention away from the need to develop strong self determination skills and directs the focus on the decision making rights of parents and other third parties. The word stresses control, not independence. Even the phrase “alternatives to guardianship” reinforces the concept that third party decision making is to be avoided, rather than emphasizing that the right to self determination and individual decision making capacity must be developed and supported.

As with all children, children with disabilities need to learn real world skills, and need to have the chance to make mistakes and to learn from them. Many transition and vocational education programs focus on building community living skills, like counting money, finding a job, getting to and from work, buying food and budgeting money. These are vital skills to community inclusion, but they are decision making skills as well. Likewise, community support systems and service providers are stressing the need to provide living supports in the client’s most natural or preferred community setting. The system is moving toward total community inclusion.

The term “self determination,” more accurately describes the process that best respects the young adult’s community living aspirations. Self determination focuses on developing skills and supports that preserve and enhance, rather than limit, the young adult’s ability to exercise choice in all facets of his or her daily life. Many options which advance self determination exist, including teaching self advocacy skills, and teaching the young adult how to name patient advocates for medical decision making or how to grant powers of attorney for complex financial needs. Self determination teaches young adults to use the same decision making resources that are available to us all, including professional consultations, the support and feedback of family and friends, access to materials which explain choices in language we can understand, and guidance from appropriate advocacy or support agencies.

Few professionals and advocates now doubt that self determination is possible for most young adults who have disabilities. Guardianships of any type, whether limited or complete, defeat the self determination concept and are the alternatives of last resort. The time has come to emphasize maximizing personal choice by referring to the process of teaching decision making skills to young adults as “developing self determination” skills, rather than shifting the focus to third parties by using the terms “guardianship” or “alternatives to guardianship.”

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