For any individual, self-determination and self-direction are key components of living an engaged community life rich in experience and social capital. Regardless of the labels assigned to a person, they can and must be engaged in determining their own life course. Often people with intellectual and developmental disabilities (IDD) benefit from targeted support to ensure that their desires for life in the community are met in balance with meeting their needs.
What is self-determination?
Self-determination is having the degree of control a person desires. This may not always mean exercising full control over all decisions. For example, one may choose to exercise full control over what music to listen to and who to have as friends, but choose to share control with their doctor regarding health care decisions, and voluntarily give up control over financial decisions to a family member or trusted staff person, because they don't want the responsibility that comes with them. It is important to recognize and honor the degree of control and choice than a person desires. Self-determination is about being in charge but is not necessarily the same thing as self-sufficiency or independence. It means making your own choices, learning to effectively solve problems, and taking control and responsibility for one's life. Practicing self-determination also means one experiences the consequences of making choices.
Historically, many individuals with IDD have been denied their right to self-determination. They have not had the opportunity or the supports to make choices and decisions about important aspects of their lives. Instead, they have often been overprotected and involuntarily segregated, with others making decisions about key elements of their lives. For many, the absence of the dignity of risk and opportunities to make choices has impeded people with IDD from exercising their right of self-determination and has inhibited their ability to become contributing, valued, and respected members of their communities, living lives of their own choosing.
People with IDD have the same right to self-determination as all people and are entitled to the freedom, authority, and supports to exercise control over the things in life that are important to them, to the degree that they desire. This right to self-determination exists regardless of guardianship status.
People exercise self-determination within the context of relationships with other persons, groups of other individuals, or systems; it does not lie within the person, but rather is a result of a dynamic, transactional relationship between the individual and their environment. People with intensive support needs, but who have a large amount of social capital, are therefore often able to exercise higher levels of self-determination than those who have significantly lower support needs but who are not as rich in social capital.
Family members, friends, and other allies play a critical role in promoting self-determination by providing supports and working collaboratively to achieve the individual’s goals. They should understand, recognize, and promote the rights and responsibilities of self-determination and respect the limitations on their own authority. Service providers, educators, and substitute decision-makers must recognize and respect the individual’s right to self-determination and the limitations on their authority.
What is self-direction?
Within the disability policy arena, self-direction refers to an approach to delivering home and community-based services (HCBS) that allow eligible individuals to directly control a range of services and supports—with the assistance of representatives of their choice—based on their own preferences and needs. The central goal of self-direction is to maximize an individual’s opportunities to live independently in the most integrated community-based setting of his or her choice. In contrast to traditional approaches that rely on the service provider to coordinate and deliver necessary supports, self-directed strategies shift control over resources and staffing to the individual, allowing each person to determine the role that the provider will play in his or her life. From the person’s point of view, it means going about one’s life and being able to incorporate services into the flow of daily activities. Depending on the program context, self-direction sometimes is referred to as “consumer-direction” or “participant-direction.”
In a self-directed program model, a considerable degree of authority is transferred to the participant and, in some instances, a family member who is selected or legally authorized to represent the participant. This approach is in sharp contrast to a traditional service delivery model where decision-making and managerial authority is assigned to professionals who may be state employees, state contractors, or service providers. In this sense, self-direction marks a major paradigm shift in the delivery of publicly funded HCBS.