Fostering Self-Determination among Children and Youth with Disabilities: Learning from Parents

Article excerpt

If you listen in on conversations among professionals, policy makers, or researchers about preparing children and youth well for adulthood, you are bound to hear the word "self-determination" come up quite often. Although self-determination can certainly mean different things to different people, it broadly refers to having the skills and opportunities to steer your own life in ways and directions that matter most to you and promote your well-being. Yet, self-determination is much more than just another special education buzzword. There is emerging research suggesting that children and youth with disabilities who are more self-determined may experience better outcomes during childhood and into adulthood.

As a parent, you may be wondering what you can do to provide your child with the skills, knowledge, and opportunities that will help them become more self-determined as they grow up and approach graduation. Most of the discussion on fostering self-determination has focused on the roles of teachers, service providers, and other professionals. It is certainly true that the instructional and support efforts of schools and agencies in this area are of great importance. However, parents (and other family members) play a pivotal role in encouraging their children with disabilities to become self-determined. What might it look like for parents to support this aspect of their child's development?

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Learning from Parents

We sought to develop and share a practical guide for parents on fostering self-determination that reflected the priorities and innovative practices of families across our state. Therefore, as part of our work at the University of Wisconsin-Madison's Waisman Center, we launched a statewide survey project to answer several questions:

* How important do parents think it is to teach skills that may enhance self-determination?

* How well do their children use these particular skills?

* And what recommendations do they have for other parents of children with disabilities who want to encourage the development of these skills?

We heard back from more than 700 parents and caregivers of children and youth with intellectual disabilities or autism spectrum disorders who were enrolled in 34 different school districts in our state. About 85% of the surveys were completed by mothers, but there was considerable diversity in the characteristics and experiences of their children. For example, their children ranged in ages from 5 to 21, nearly half received services under the special education category of autism, and almost two fifths were eligible for free or reduced-price meals. About one third of their children spent most of their school day in general education classrooms and nearly two thirds "sometimes" or "often" engaged in challenging behaviors.

We were encouraged by the large number of parents who invested their time in this research project. In the remainder of this article, we highlight some of what we learned about fostering self-determination from these parents.

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Parents' Views of Skills That Enhance Self-Determination

Overall, parents told us they considered a variety of skills associated with self-determination to be "somewhat" or "very important" for their children to learn. For example, skills related to choice-making, decision-making, goal-setting, problem-solving, self-advocacy and leadership, self-awareness and self-knowledge, and self-management and self-regulation were highly valued by more than 60% of parents. Although most parents considered these skills to be valuable for their children to learn, less than a quarter of parents said their children performed any of these skills "very well." Learning to be more self-determined is an ongoing process for all children, and it can sometimes be especially challenging for children with autism or intellectual disabilities. …