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Self-Determination and Young
Adults: Seeking a State of Mind
by Calvin and Tricia Luker,
Bridges4Kids
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https://www.bridges4kids.org
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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