Self Advocate's Corner: Supporting Our Children to Find their Way in the World: The Push and Pull of Self-Determination

Self-determination is defined as “the right to decide for yourself.” Getting to the point of making your own decisions and having control over your life is a critical part of anyone’s “growing-up” process. During  transition years as young people with disabilities move on to their adult lives after years of protection and guidance by their families and teachers,  typical stresses and strains for anyone during this important point of passage can be even bigger when disability is involved.

John and Connie O’Brien, and Beth Mount, known for their work promoting valued lives and self-determination for people with disabilities through person-centered practices, have noted the importance of five key elements to assure people with disabilities have good lives:

1. Belonging
2. Respect
3. Sharing Ordinary Places
4. Making a Contribution
5. Having Choices and Making Your Own Decisions

(O'Brien, J. & O'Brien, C.L. (2007), A little book about person-centered planning. Toronto: Inclusion Press.)

Beth Mount proposes that individuals wanting to help people with disabilities achieve these five elements in their lives challenge themselves to think big and take risks as they ask themselves the following questions:

1. How can we expand and deepen people’s friendships?
2. How can we increase the presence of a person in local community life?
3. How can we help people have control and choice in life?
4. How can we enhance the reputation people have and increase the number of valued ways people can contribute in community life?
5. How can we assist people to develop competencies?

(Mount, B. (2000). Person-centered planning: Finding directions for change using personal futures planning. Amenia, NY: Capacity Works.)

Melissa is a 26-year-old woman who lives in a small Colorado mountain community where she is well on her way toward self-determination – but she and her mother will tell you that although it’s been rewarding, it has not always been a smooth process.

Melissa lived with her family for her entire life, most recently in their remote high mountain cabin about 15 miles from the small town where Melissa now rents a “one bedroom, one kitchen, one bathroom house”  located in back of another larger home against the mountainside. In the two years since she moved into her own place, Melissa, in addition to having a visit from a donut-hole-eating bear through an open window one summer night, has developed a growing circle of
friends in her community. These friends look out for her, and she enjoys many new opportunities because of the easy access she has to a variety of community places just a short walk from her home. Among the community places Melissa frequents are the Safeway grocery store, the post office, the community recreation center where she swims regularly and works as a volunteer, the coffee shop where she has become friends with the owner, and the public library where she also does volunteer work. Melissa participates in the community garden and had a plot last summer where she grew her own vegetables -- broccoli, “sugar daddy” peas, tomatoes, rosemary, and yellow squash, quite an impressive crop!

Melissa is a lively, expressive, and determined young woman who experiences a developmental disability and has intense medical challenges in her life that still require ongoing attention and for which she had several major surgeries when she was younger.

Melissa had a decent life with her family, but, especially since leaving school at age 21, she did not like living in such an isolated mountain spot. She and her mother were not sure what to do about that, and it caused some friction between them. Her mother knew that Melissa wanted to be her own person, to try her wings and have more in her life, but she felt anxious and powerless about changing things – moving Melissa away without any supports seemed too risky. So any acceptable changes would likely require uprooting the entire family which was not a possibility.

Here is where person-centered practices came into play for Melissa and helped her begin to realize her vision for the future. Because her family still played a key support role in her life, it was important that they stay on board in the planning process so they could continue to uphold their responsibility for assuring that Melissa remained happy, healthy, and safe.

Melissa’s planning process for taking charge of her life began when she signed up for a self-advocacy and leadership course offered by PEAK Parent Center at the beginning of 2009. As part of the course, she enrolled a circle of people who knew and cared about her to help her, and she learned how to speak up to them about her dreams for the future. Eventually she invited these people to participate with her in a PATH planning session later that year. Melissa shared her vision of moving out of her parents’ home and other dreams for her life. Melissa and her circle members listed her strengths, gifts, and interests and then brainstormed new ideas for her future and put the ideas into her step-by-step plan. Later that summer, with the help of her circle members, Melissa moved down the mountain into town and into her own place. Since then, Melissa had another PATH planning session when she felt the need for her circle to regroup to help her to continue to move forward. 

Check out this video, “Melissa on PEAK’s Person-Centered Planning 2010,” where Melissa talks about her experiences over the past few years.

How do Melissa and her mother feel now about the whole process and the big changes in both of their lives as a result? Take a look at this video interview “The Journey to Self-Determination with Melissa and her Mom, Sarah” where they discuss their experiences and changes over the past few years.

There may be some readers who have trouble seeing their own child or student with disabilities in Melissa and her story. Their questions or comments might be:

• “My child can’t live independently – her disability is too severe.”
• “How can we be sure he won’t be put at risk and victimized?”
• “She doesn’t speak and can’t use a communication system, so she can’t really make her own decisions.”
• “He has significant health care and physical support needs, so what would self-determination look like for him?”

Please don’t dismiss the possibilities for your own child! All people have unique lives, situations and stories. We at PEAK have many other success stories of families and individuals who have transcended challenging situations to reach self-determination.

The basic principles are the same no matter how challenging the situation might seem: ALL people need to become self-determined. They need to have their right to decide for themselves upheld by the people who care about them. And, all people need these 5 basic elements present in their lives: belonging, respect, inclusion, contributing, and choices.

Please support your child to assure that the five key elements are present to the fullest extent possible and that his or her potential for a successful life is fully realized!

Do you have questions, ideas or stories of your own to share? Join us in a conversation about the push and pull of the self-determination process on PEAK’s Facebook page. Melissa and her Mom will also be participating.

PEAK Parent Center www.peakparent.org - New Year's Special Edition 2012 SPEAKout Newsletter

Copyright 2012 © by PEAK Parent Center, Inc.  All rights reserved. Permission to reproduce may be obtained from PEAK Parent Center.

Graphic with "Devote yourself to an idea..." included under Creative Commons License by MyThoughts0n.