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Brief Paper on Personal, Family and Community Strategies to Enhance Consumer-Direction and Self-Determination

Michael L. Wehmeyer, Ph.D.
Research Associate Professor and Director,
Self-Determination Projects
The Beach Center on Families and Disability,
The University of Kansas

Personal Strategies

What are the key opportunities, skills, information and supports needed by individuals to express self-determination (take control of their lives)?

Self-determination is a term with two primary meanings; as a personal attribute, characteristic, or disposition that refers to having control over one's life and destiny, and in a national, political, or corporate sense referring to the right of people or peoples to self-governance. In both cases, self-determination must be understood in opposition to other-determination. The Arc's efforts to promote self-determination have focused on the meaning of the term as a personal entity and we have engaged in a series of educational efforts to promote the development and acquisition of that characteristic. Self-determined individuals are, within our framework, "causal agents" in their lives. That is, they make or cause things to happen in their lives. Personal self-determination and consumer control are, basically, two sides of the same coin. Young people who leave school better prepared and enabled to set goals, make decisions, solve problems, and self-advocate will, in turn, be more likely to and more capable of taking control over their lives, including exerting greater control in the direction of services or supports from which they might benefit and with which they can achieve self-selected goals.

The emergence of self-determination is lifelong and has three primary components; capacity enhancement, opportunity, and supports/accommodations. Despite rhetoric to the contrary, I see no particular predominance to any one of these components; they are all important if individuals with and without disabilities are to become more self-determined. Napoleon Bonaparte was quoted as saying that ability is of little account without opportunity, and if one doesn't have the opportunity to make choices, participate in decisions, solve problems, and so forth, all the skill or capacity in the world doesn't matter. Similarly, however, if one doesn't have the capacity to benefit from an opportunity, it is likewise a moot point.

There is a reciprocity between building capacity and providing opportunities, in that there are times when the best way to become more self-determined is to simply take control and in the effort learn new and valuable skills, and there are other times in which one would prefer to acquire new skills prior to taking greater control over or responsibility for some aspect of one's life. The interaction between enhanced capacity and increased opportunity leads to more adaptive perceptions and beliefs about oneself and the environments in which one lives, works, plays and learns. This is the basic process involved in the development of self-determination; beginning early in life, indeed at birth, children acquire and develop a variety of skills that enable them to navigate their environments. At the same time, children are provided more, and more sophisticated, opportunities to make choices, solve problems, and so forth. This "reciprocal dance" continues, sometimes with opportunity in the lead and other times with capacity enhancement in the lead, and as children become more capable and have more experiences of success, they become more confident of their capacity, believe that they can act on their environment, and begin to take greater risks. By adolescence, young people are involved in decisions, have a fairly accurate understanding of their strengths and limitations, and begin to exert more control and seek greater autonomy.

This does not imply, in any manner, that one has to have some prerequisite skill level to control one's life and one's destiny. Self-determination means acting in one's life instead of being acted upon, and all people desire greater control and autonomy and can achieve that outcome. The intervening factors for both capacity and opportunity are the design and implementation of individual supports and accommodations. The degree to which individuals with the most significant disabilities are "self-determined" is as much a function of the degree to which supports and accommodations are provided that compensate for limitations in capacity and, likewise, enable people to circumnavigate barriers in opportunity and environment. Such supports will range from assistive technology devices and creative programmatic activities to friends and neighbors, and will be as individual as the person him or herself.

As such, the key actions that need to occur to enhance self-determination and, ultimately, consumer direction and control, involve engaging children early on in the dance of opportunity and capacity enhancement, and being creative and diligent in identifying, designing, and providing supports and accommodations. We have identified a number of critical areas related to capacity enhancement, including teaching students (through instruction and role modeling), how to identify and solve problems, set and attain goals, self-manage and self-regulate their behavior, make decisions, and self-advocate. These are areas in which there are proven instructional techniques and materials that can lead to enhanced capacity for virtually all students. These areas represent a life span approach to promoting self-determination, taking into account students' age and an understanding of the development of these component elements. Children in elementary school are not, developmentally, ready to make independent decisions, and activities to promote self-determination revolve more around understanding consequences of various options available through the choice-making process, identifying and enunciating simple problems, self-evaluating progress toward goals based on preferences, and so forth. As children mature and become young people, they are better equipped to learn to apply their burgeoning choice-making and problem-solving skills to the decision-making process.

In addition to the wide array of relevant instructional activities, there are a variety of opportunities and experiences that will contribute to enhanced self-determination. Early in life children need to be provided opportunities to make choices and experience the outcomes of those choices. This process occurs as part of children's growing knowledge about themselves, their preferences, and their strengths and limitations. The old adage that nothing succeeds like success is true as well, in that children become "psychologically empowered" based on continuing experiences with success. This is particularly true in areas like teaching problem solving, where children should begin learning with solvable problems, and move to more difficult problems only after they have had experiences with successful problem solving. Although efforts to promote self-determination should not be provided only to students receiving their education in inclusive settings, the fact of the matter is that experiences of isolation and segregation breed dependency and stifle self-sufficiency. Children need to have ongoing experiences of integration and the opportunities to develop the friendships and networks that become the ultimate supports and accommodations. Teachers also need to create learning communities in which all children have a voice in and contribute to classroom rules, standards of behavior, and the daily schedule. Opportunities to make choices, solve problems, and make decisions should be infused into the curriculum across all content areas and self-determination should not be marginalized as a discrete content area.

The educational planning and decision-making process provides a unique and powerful vehicle in which to provide experiences that enhance capacity and to enable children and young people to assume control over decisions that impact their lives. Such processes are inevitably goal-oriented, and children and youth need to have the chance to learn to set and track goals. The goal-setting process should include goals and objectives that are developed by the student, and across multiple goal areas students should be enabled to evaluate their progress on goals and to design action plans to achieve that goal.

As previously mentioned, the process of identifying and providing supports and accommodations is a highly individualized process, and it is not feasible to identify such supports outside of a thorough examination of personal preferences, wants, needs, abilities, limitations, values, and so forth. There are, undoubtedly, a number of accommodations, like synthesized communication devices, or supports, like person-centered planning, that will have wide viability for promoting self-determination. Nonetheless, there is no list of supports or accommodations, no matter how innovative, that fits every need and will enable every person to become more self-determined. In some ways we run the risk of limiting the creativity and energy with which we approach the process of identifying supports and accommodations if we identify a stock set of such accommodations.

Most of these issues focus on promoting self-determination for children and youth with disabilities. There are, certainly, many adults who have some of the same needs and have not had the opportunity to learn skills that enable them to exert greater control and to, in fact, simply do so. In such circumstances, one must be cautious of applying models from education to the lives of adults. The role of student is one which has inherent in it a power relationship, with the student under the control of, to some degree, the teacher. To avoid keeping individuals with disabilities in child-like and subservient roles all their lives, it is likely that in the dance between opportunity and capacity enhancement, opportunities to exert and take control may need to lead, with skills development and capacity enhancement following as a part of that opportunity. When capacity enhancement does need to lead, it should be through a self-directed manner. That means that individuals should be provided the opportunity to engage in self-directed learning activities that enable them to acquire new and valuable skills or that they need to be provided the authority to determine, on their own, how they learn a particular new skill.

Perhaps the most important action we can take to support and better enable adults with disabilities to become more self-determined and to take greater control over their lives and destinies is to frequently communicate our belief in them and in their capacity and right to assume the mantle of adulthood. It is often not teaching a skill or providing an opportunity that is the catalyst to change, but instead simply the act of expressing support for and belief in an individual that prompts action. Finally, we need to move from thinking about self-determination as a "disability" issue and move forward with the recognition that this is an important contributor to an enhanced quality of life for all people. Enabling and supporting self-determination is a recognition of the value and worth of all people, and communicates respect and dignity.

Family Strategies

What is the role of families in supporting the self-determination and control of their members? What do families need to be able to support the self-determination and self-direction of their members?

Families are the essential ingredient in promoting self-determination, and efforts that proceed without active family involvement are destined to be less successful than they would otherwise be if there was an active family component. Family members are the earliest models of goal setting, problem solving and decision making strategies, provide the environment in which young children learn, through exploration and trust, that they can influence outcomes in their lives, and remain the primary support mechanism for most people across the life span.
Individuals who become self-determined frequently point to the fact that they received encouragement within their family to strive toward greater self-determination and self-advocacy. Parents and family members can create a supportive environment in which children can test their abilities and limitations. It is important to assist families to help their child develop positive work habits and behaviors, skills to enhance personal self-determination and the self-confidence to succeed. The Arc suggested ten simple steps for families to promote independence and self-determination, and educators could provide information like this to parents:

These illustrate the types of suggestions that can enable parents and family members to focus on self-determination as an outcome pertinent to their son or daughter. Communicating high hopes and expectations may, in fact, be the most important thing we can do to support and enable families to, in turn, enable their son or daughter to become self-determined. Too frequently professionals paint a bleak picture of possible outcomes and, through that pessimism, limit the dreams and aspirations of families and individuals with disabilities. We need to engage with families in the dreaming and visioning process and to remove our personal biases and expectations from the equation. When, in fact, we can approach planning and decision making with a problem solving orientation, we may find that we are better able to support people to achieve outcomes that might, otherwise, be discarded as unrealistic or unattainable.

There is an inevitable tension between the emergence of autonomy and independence on the part of any individual and the needs of his or her family for safety and protection, a tension that may be heightened by the presence of a disabling condition. However, professionals and others are often too quick to assume that legitimate family concerns about such issues are the primary barrier to self-determination, and fail to examine the role they play in maintaining a dependency creating system. If, from the time the child entered early childhood, through adolescence and young adulthood, parents were provided an equal role in making decisions and solving problems that relate to educational planning and implementation, it is likely they would, in turn, be more likely to support their son's or daughter's emerging autonomy. Similarly, if students and adults with disabilities had an equal voice in decisions that impact their lives, families might see the possibilities of promoting self-determination. When self-determination is conceptualized, however, as a specific outcome (e.g., home ownership, etc.), no matter how innovative that outcome some parents will not see self-determination as something attainable by their son or daughter.

Community Strategies

What is the role of community attitudes, treatment and opportunities in supporting self-determination and self-direction?

The community as a place where people live, learn, work and play is a critical contributor to enhanced self-determination, as was discussed previously. Communities that welcome and support all members, provide opportunities to experience control and express preferences, provide opportunities for meaningful vocational and non-vocational activities, provide inclusive educational opportunities and are designed to ensure physical and cognitive access are places in which all people can live self-determined lives. The community as a social and political network is equally important. The normalization movement of the 1970s and the Independent Living movement of the 1980s set the stage, in many ways, for the self-determination movement of the 1990s by changing the way people with disabilities were perceived, indeed changing the broader understanding of the experience of disability, and changed societal expectations of Americans with disabilities from individuals who are pitied and worthy of charity to individuals with equal rights and the capacity to contribute to the greater good and to achieve self-sufficiency. That is why Americans with disabilities, like Robert Williams and Michael Kennedy, emphasize the sense that self-determination means living the American Dream.

In 1972 Bengt Nirje issued a call for self-determination for people with mental retardation. Yet, at that time society and the political structure were not prepared to move on that call. When people with disabilities began, in the early 1990s, to sound the same trumpet, it was within the context of a different perspective of disability. One of the four pillars of disability law in this country is that such policy and practice should support self-determination and self-sufficiency and not dependency and overprotection. While we, as a social community, have come far in changing attitudes and expectations, we have a long way yet to travel.

Recommendations

What are your priority recommendations for promoting the capacities of individuals to express self-determination and for assisting families and communities with supporting them?