Of the many definitions of self-determination, the authors here prefer Michael Kennedy's: "Self-determination is different for each person, depending on the person's circumstances and what his or her disabilities are." Linked with self-determination are the concepts of education and individual rights, all simple, but difficult in application for complicated people in real-life complex situations.
Part of the complexity stems from interpreting, guessing, and hypothesizing what an individual with severe disabilities attempts to communicate. Self-determination goes hand-in-hand with communication, because communication allows people to make choices, seek information, form relationships, and make decisions known.
Even people without disabilities have communication problems. One person may request something, but the other gives them something else because the first person should know better or thinks the first should want an alternative. Or one person interprets a message to mean something else. True communication requires one person with sensitivity and understanding to understand the other and respond so that the message sender is satisfied that she or he is understood. It also is based on people who share meanings based on experiences.
Many people with severe disabilities depend on another's interpretation and willingness to listen. If a support person tries to listen and uncover opportunities in daily life for choice making, then self-determination is increased, However, if the person with severe disability does not want to change from dependency, then she or he is only making responses to please. There are also individuals who lack interesting routines and activities and may have little to communicate or communicate frustration in problem behavior.
Methods to improve communication include facilitated communication, preference assessments, and positive behavior supports. Facilitated communication uses a communication partner to interpret what a person with severe disabilities means as she or he types on a keyboard or points to symbols. Some believe facilitated communication has opened up new communication channels; others question how valid the communication is. Research supports both claims.
Choice and preference assessments help determine an individual's likes and dislikes. This helps them figure out rewards that can be added to an individual's life and ways to change the environment to increases satisfaction. Choices also can be used to increase goals that go along with self-determination.
Positive behavior support, yet another communication method, rewards positive behavior and concentrates more on what sets off the challenging behavior rather than the behavior's consequences. It also emphasizes building skills in inclusive settings and analyzing why a person uses challenging behavior through functional assessments. When the reasons for the behavior are charted in the assessment and understood, then a tailored support plan is determined and put in action. Self-determination is part of positive behavior support.
Although these methods aid self-determination, they do not ensure it. The authors remind that we live in an interdependent society and people with severe disabilities need to be independent within this interdependence. In conclusion, the authors write: "We as professionals have become glib in discussing self-determination. We use the right words and take the politically correct postures. However, we need to go further, much further. We need to undertake a critical self-examination to ensure that not only do we say the right things, but that we believe them, and not only that we believe them, but we are truly and effectively putting them into practice." #104
Brown, F., Gothelf, C. R., Guess, D., & Lehr, D. H. (1998). Self-determination for individuals with the most severe disabilities: Moving beyond the chimera. The Journal for the Association for Persons With Severe Handicaps 23(1), 17-26.
Keyword: Self-determination
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