Self-Determination in Action: Learning to Make Choices

Down Syndrome News, Vol. 26, No. 4

Self-Determination in Action: Learning to Make Choices
By Christine D. Bremer, Mera Kachgal, and Kris Schoeller

Editor’s note: All people need to have and make choices. That’s what the self-determination movement is all about – making sure that people with disabilities are given the opportunity to make their own choices about how they will live their lives. Like so many things, making good choices is a learned skill. It does not happen without practice. It’s never too late – or early – to start practicing. Whether the people with DS that you care about are transitioning to adulthood or preschool, you can give them the right to decide for themselves what their lives will be like and what they need to do to make their dreams come true. Here’s how.

A self-determined person is one who sets goals, makes decisions, sees options, solves problems, speaks up for himself or herself, understands what supports are needed for success, and knows how to evaluate outcomes. The capabilities needed to become self-determined are most effectively learned through real-world experience, which inherently involves taking risks, making mistakes, and reflecting on outcomes. These experiences help a young person test his or her strengths and limitations and identify appropriate short- and long-term goals.

In addition to real-world experience, youth benefit from open, supportive acknowledgement and discussion of their disability. Too often, families, teachers and other well-intentioned people protect youth with disabilities from making mistakes and avoid discussing the details and potential ramifications of the youth’s disability. Instead, they focus on the positive and steer the youth away from many experiences where there is a potential for failure.

However, in order to direct their own futures, youth need to know themselves and understand how their disability might affect academic learning, relationships, employment, participation in their communities and need for supports. With this knowledge, they are better positioned to develop plans, make decisions and learn from experience. There can be a fine line, however, between experiencing the real world and losing one’s sense of personal empowerment.

Supporting a young person in becoming self-determined is not about simply removing limits and structure. It is, rather, about providing opportunities so a young person can make meaningful decisions about his or her own future. For families, teachers and other adults, supporting self-determination requires being open to new possibilities and taking seriously youths’ dreams for the future.

Promoting Self-Determination in Youth with Disabilities: Tips for Families and Professionals

Promote Choice Making

  • Identify strengths, interests and learning styles;
  • Provide choices about clothing, social activities, family events and methods of learning new information;
  • Hold high expectations for youth;
  • Teach youth about their disability;
  • Involve children and youth in self-determination/self-advocacy; opportunities in school, home and community;
  • Prepare children and youth for school meetings;
  • Speak directly to children and youth;
  • Involve children and youth in educational, medical and family decisions;
  • Allow for mistakes and natural consequences;
  • Listen often to children and youth.

Encourage Exploration of Possibilities

  • Promote exploration of the world every day;
  • Use personal, tactile, visual and auditory methods for exploration;
  • Identify young adult mentors with similar disabilities;
  • Develop personal collages/scrap books based on interests and goals;
  • Involve children and youth in service learning (4H, Americorps, local volunteering).

Promote Reasonable Risk Taking

  • Make choice maps listing risks, benefits and consequences of choice;
  • Build safety nets through family members, friends, schools and others;
  • Develop skills in problem solving;
  • Develop skills in evaluating consequences.

Encourage Problem Solving

  • Teach problem solving skills
  • Allow ownership of challenges and problems;
  • Accept problems as part of healthy development;
  • Hold family meetings to identify problems at home and in the community;
  • Hold class meetings to identify problems in school;
  • Allow children and youth to develop a list of self-identified consequences.

Promote Self-Advocacy

  • Encourage communication and self-representation;
  • Praise all efforts of assertiveness and problem solving;
  • Develop opportunities at home and in school for self-advocacy;
  • Provide opportunities for leadership roles in home and in school;
  • Encourage self-advocates to speak in class;
  • Teach about appropriate accommodation needs;
  • Practice ways to disclose disability and accommodation needs;
  • Create opportunities to speak about the disability in school, home, church, business and community.

Facilitate Development of Self-Esteem

  • Create a sense of belonging within schools and communities;
  • Provide experiences for children and youth to use their talents;
  • Provide opportunities to youth for contributing to their families, schools and communities;
  • Provide opportunities for individuality and independence;
  • Identify caring adult mentors at home, school, church or in the community;
  • Model a sense of self-esteem and self-confidence.

Develop Goal Setting and Planning

  • Teach children and youth family values, priorities and goals;
  • Make posters that reflect values and are age-appropriate;
  • Define what a goal is and demonstrate the steps to reach a goal;
  • Make a road map to mark the short-term identifiers as they work toward a goal;
  • Support children and youth in developing values and goals;
  • Discuss family history and culture – make a family tree;
  • Be flexible in supporting youth to reach their goals; some days they may need much motivation and help; other days they may want to try alone.

Help Youth Understand Their Disabilities

  • Develop a process that is directed by youth for self-identification: Who are you? What do you want? What are your challenges and barriers? What supports do you need?
  • Direct children and youth to write an autobiography;
  • Talk about the youth’s disability;
  • Talk about the youth’s abilities;
  • Involve children and youth in their IEPs;
  • Use good learning style inventories and transition assessments;
  • Identify and utilize support systems for all people.

This information was taken from Self Determination: Supporting Successful Transition by Christine D. Bremer, Mera Kachgal and Kris Schoeller, a National Center on Secondary Education and Transition Research to Practice Brief (Vol. 2, Issue 1) published in April 2003. Download all six pages at www.ncset.org/publications.