Choice & Self-Determination for People with Intellectual Disabilities “It is our choices ... that show what we truly are, far more than our abilities.” -J. K. ROWLING, Harry Potter and the Chamber of Secrets Introduction American society values choice and self-determination above many things. As Doug Guess et al. point out, “The opportunity to make choices reflects favorably on one’s perceived independence, dignity, and self-worth.” In the past, services for individuals with disabilities have been provided on a “fix-it” model, which focuses on the person’s limitations and attempts to “fix” them through structured learning objectives devised by service providers rather than by the person him- or herself. Now, we use person-centered planning to provide supports based on the person’s strengths and desires, and the individual’s own choices are central to a successful support plan. What is choice? “Choice is a determinant in personal development ... by my free acts I am making myself.” BERNARD LONERGAN, Understanding and Being Choice is the freedom to consider possibilities and decide what is best for oneself. Choice requires accessible options. For people with severe disabilities, choice-making may require support to make options available and support to communicate decisions. Choice requires the development and communication of preferences. A person making a choice must be able to weigh options based on his or her past experience, present needs, and understanding of future potential consequences. Why is choice so important? “A man has to know he had a choice before he can enjoy what he chose.” KEN KESEY, Sometimes a Great Notion In the past, people with disabilities have been denied choices because of the perception that they were not able to make real choices or understand the consequences of their choices. Those who were allowed to make choices were often given a very limited set of options. Lack of practice in choice-making can easily lead to “learned helplessness,” or the belief that nothing one does makes a difference. If a person is not given options, or if his or her expressed preferences are not honored, the person may begin to believe that his or her actions do not result in any type of consequence. People who experience learned helplessness often demonstrate: passivity negative expectations self-deprecation lack of self-esteem decreased ambition depression Guess, D., Benson, H. A.,& Siegel-Causey, E. (2008). Concepts and issues related to choice making and autonomy among persons with severe disabilities. Research and Practice for Persons with Severe Disabilities, 33 (1-2), 75-81. Overprotection, or a tendency of support staff do to things for the person rather than with the person, can limit the person’s ability to physically develop skills and can keep the person from feeling the pride and sense of accomplishment that comes from doing tasks independently. What are some choices that people should be able to make? “Any time choice is restricted in some way, there is bound to be someone, somewhere, who is deprived of the opportunity to pursue something of personal value.” BARRY SCHWARTZ, The Paradox of Choice Steven J. Taylor lists some important choices people should be able to make: living arrangements (where, and with whom) participation in community activities and associations type of personal assistance and support sexuality and sexual relations where to work medical treatments and interventions meals and mealtime routines bedtime routines leisure routines dress and personal appearance Who is able to make choices? “Ability is of little account without opportunity.” -NAPOLEON BONAPARTE Question: Who is able to make choices? Answer: EVERYONE. From the Rehabilitation Act (originally passed in 1973; amended in 1992): “disability is a natural part of the human experience and in no way diminishes the right of individuals to: a. live independently; b. enjoy self-determination; c. make choices; d. contribute to society; e. pursue meaningful careers; f. enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society.” What is self-determination? “Self-determination is a ten-dollar word for choice—it is another word for freedom—a life filled with rising expectations, dignity, responsibility, and opportunity—a chance to live the American dream.” -BOB WILLIAMS Commissioner, Administration on Developmental Disabilities, U. S. Department of Human Services Self-determination essentially means that a person is able to make both routine and major choices in everyday life. The principles of self-determination outlined by the Natural Resource Center on Supported Living and Choice are: Freedom—the ability to freely choose supports based on one’s needs Authority—the ability to control the funding and planning of one’s own supports Autonomy—the ability to organize resources in a way that best fits one’s needs Responsibility—accountability for the spending of public funds The values supported by self-determination are: Respect – Respect involves recognition that people with disabilities are valuable and capable. Choice—People with disabilities must have access to the same options enjoyed by most people. Ownership—More than just routine decision-making, ownership implies that the person has complete authority over the supports received and the lifestyle lived. Support—All people need some supports to help them make decisions in life; people with disabilities are no different. Opportunity—Opportunity requires the expansion of experiences as well as the ability to take risks and make mistakes. “Self-determination is what life is all about. Without it, you might be alive, but you wouldn’t be living—you would just be existing.” -M. KENNEDY, Self-Determination and Trust: My Experiences and Thoughts The term “self-determination” must be differentiated from the term “self-determination project,” which refers to the political movement toward person-controlled funding and authority over the planning process which is taking place in many American cities. A self-determination project seeks to ensure that each person receiving supports will have full control over his or her funding as well as major decisions such as where and with whom he or she will live, who will provide what type of supports, what medical interventions will be done, and how he or she will earn a living. This type of program focuses on allowing the person full decision-making ability rather than limiting him or her to the narrow choices provided by the “system.” What if the person makes poor choices? “The highest manifestation of life consists in this: that a being governs its own actions. A thing which is always subject to the direction of another is somewhat of a dead thing.” –ST. THOMAS AQUINAS So, what if the person makes “poor” choices? This is a common concern posed by supporters of people with disabilities. For supporters, who are tasked with keeping the individual safe and healthy, it is difficult to imagine standing by and allowing the person with disabilities to make a choice that could potentially harm him. But the fact is, all human beings are allowed to make choices which could result in some harm. This is called “dignity of risk.” All people need to have the chance to make mistakes and to learn that some choices result in unpleasant consequences. All people must learn to take responsibility for their actions and to recognize when their actions might put themselves or others at risk. Therefore, people with disabilities should be afforded the same choices all other people are able to make, and should NOT be afforded the choices that all other people are NOT able to make (i.e. the freedom to commit a crime). Another issue is that denying a person a choice could result in frustration and behaviors that could put the person or others at risk anyway! So we should just let the person get hurt? NO. Steven J. Taylor makes the point that, “choice should never be used to justify neglect, poverty, or the absence of realistic options. People do not choose to go hungry or be homeless.” Supporters should never use “choice” as an excuse to neglect their own responsibilities. Not acceptable statemtents: “I knew she would get hurt, but it was her choice to climb on the roof.” “But he chose to skip work and stay in bed all day!” “She is allergic to peanuts, but we had to let her choose to eat a peanut butter cookie.” How can we support a person in choice-making and self-determination? “Self-determination is not a privilege to be earned or a benefit one bestows on another; it’s an inalienable right of being fully human.” –KATHIE SNOW We do not “give” a person the right to self-determination, but there are many ways we can support a person in self-determination: *listening to the person *believing in the person’s worth *finding information about what has worked for others in order to help the person achieve goals *thinking creatively about how to challenge the person to make the most of life *encouraging—or at least, not discouraging—risk *helping the person learn from his mistakes *helping the person develop skills that can open new opportunities investigating blocks that may have prevented the person from experiencing new things -O’Brien, John. (1998). Focus on Vermont’s Self-Determination Project. Retrieved from thechp.syr.edu/vermont_sd.pdf. How can we encourage choice-making and self-determination for the people we support? “There's small choice in rotten apples.” WILLIAM SHAKESPEARE, The Taming of the Shrew In situations involving learned helplessness, sometimes people need to be encouraged to begin expressing choices. There are many things supporters can do to encourage choice-making for people with disabilities: *identifying age- and ability-appropriate areas where choices and decisions should be made *recognizing a person’s style of expression *honoring the choices a person makes, without exception *providing plenty of broad experiences from which the person may develop preferences *helping the person see the link between expression of preference and predictable outcomes (contingent experiences) Guess, D. Benson, H. A., & Siegel-Causey, E. (2008). Concepts and issues related to choice-making and autonomy among persons with severe disabilities. Research & Practice for Persons with Severe Disabilities, 33 (1-2), 75-81. Conclusion “Taking seriously people’s rights and powers to make individual choices radically challenges our tradition of those who know better making choices for those who have yet to learn.” -HERB LOVETT, Learning to Listen As supporters of people with disabilities, we have a responsibility to help the people we support make choices. It is equally important for each person to make routine choices like what to have for breakfast and to weigh options for larger decisions such as where to live. We may battle the person’s learned helplessness based on past experiences, incredible communication difficulties, and cultural barriers to full participation in the community. But the end result will be the ability of the people we support to live fuller, more meaningful lives—on their own terms. Resources Guess, D. Benson, H. A., & Siegel-Causey, E. (2008). Concepts and issues related to choice-making and autonomy among persons with severe disabilities. Research & Practice for Persons with Severe Disabilities, 33 (1-2), 75-81. Lovett, H. (1996). Learning to listen: Positive approaches and people with difficult behavior. Baltimore: Brookes. National Resource Center on Supported Living and Choice, Center on Human Policy. Fact sheet: Summary of self-determination. Retrieved from www.soeweb.syr.edu/thechp. Nerney, T. Communicating self-determination: Freedom, authority, support and responsibility. Retrieved from www.centerforself-determination.com. Nirje, B. (1972). The right to self-determination. In Wolfensberger, W. Normalization. Toronto: National Institute on Mental Retardation. (pp. 176-193). O’Brien, J. (1998). Focus on Vermont’s self-determination project. Retrieved from thechp.syr.edu/vermont_sd.pdf Perske, R. (1972). The dignity of risk. In Wolfensberger, W. Normalization. Toronto: National Institute on Mental Retardation. (pp. 194-200). Taylor, Steven J. On choice. Retrieved from http://thechp.syr.edu/on_choice.htm. Turnbull, A., & Turnbull, R. (2001). Self-determination for individuals with significant cognitive disabilities and their families. The Association for Persons with Severe Handicaps, 26 (1), 56-62.