By Steven J. Taylor
The concept of “choice” is frequently discussed in the field of developmental disabilities these days. Yet the concept means different things to different people and is used to justify radically disparate visions of the place of people with developmental disabilities in society. This article presents some thoughts on the concept of choice.
Why is choice important?
Any adult has the right to decide with whom to associate. Some groups have chosen to segregate themselves from the wider society based on religious, ethnic, and other grounds. Some parents choose to send their nondisabled children to boarding schools where they can be with students of similar ethnic, religious, or economic backgrounds. In a democratic society people have the right to choose segregation—to associate with only those persons presumed to be exactly like themselves. But society has no responsibility to subsidize segregation. Public policy toward people with disabilities should support opportunities to make the same choices other people make—nothing more and nothing less.
Historically, people with disabilities and their families were offered few, if any choices over their lives. Families of children with severe disabilities had two options: they could institutionalize their children or keep them at home with no publicly funded assistance or even education. Adults with severe disabilities could be placed at public institutions or live in the community with no services or supports. With the establishment of a federally guaranteed right to education and the expansion of community services, the options available to people with disabilities and their families slowly started to expand. Nevertheless, many people continue to be denied the opportunity to make choices about the most basic aspects of their lives.
What is choice really about?
In my view, choice means that people with disabilities, regardless of severity of disability, should be able to enjoy the same choices and options available to other people in society. A public commitment to choice means that public funds and programs should support people in making these choices and selecting these options. It does notmean that public funds and programs should support lifestyle choices and living conditions other people do not enjoy.
What are some important choices that people should be able to make?
All people should be able to make decisions over various aspects of their lives? For adults, major choices include decisions about
- In which communities and neighborhoods to live.
- Whether to live alone or with others and, in the case of the latter, the specific person or persons with whom to live.
- Friendships and participation in community activities and associations.
- From whom and how to receive personal assistance and support.
- Sexuality and sexual relations.
- Where to work.
- Medical treatment and therapeutic interventions.
Choices about these matters determine the degree to which people can make decisions about day-to-day things such as:
- Meals and mealtime routines.
- Bedtime routines.
- How to spend leisure time.
- Dress and personal appearance.
What public policies and approaches are consistent with choice?
Public policies and service approaches should maximize personal control and choice. The following are some current approaches consistent with this principle:
- Individualized funding. Sometimes referred to as “self-determination” or “cash and counseling,” individualized funding provides for funds for services and supports to be allocated directly to individuals. A fiscal intermediary and service coordinator may be used to assist people in managing funds allocated to them.
- Person-directed personal assistance. Under this approach, people are able to select, hire, supervise, and, if necessary, fire their support staff or personal assistants.
- Person-centered planning. This is a planning approach designed to identify people’s capacities, needs, and desires.
- Home of Your Own. This involves innovative financing schemes to enable people with disabilities to own their own homes as opposed to living in agency operated facilities.
- Family-center support services. For children, in particular, families should control the services offered to them.
Are all people capable of making choices?
All people should be presumed competent of making choices about their lives. Some people, however, may be limited in their ability to express their choices. In these instances, every effort must be made to ascertain their preferences and choices by people who know them well. Surrogates—parents, family members, and guardians—will sometimes need to make decisions on people’s behalf when it is impossible to determine what they want. The choices that surrogates make in such circumstances should be limited to the range of choices and opportunities available to people without disabilities.
What about people who make bad choices?
People with or without disabilities can make bad choices. Some people pursue unhealthy life styles or spend their money poorly. Disability is not a reason for depriving any person from making the same choices other people have the right to make. Nor is disability a reason for supporting people with disabilities to make decisions (e.g., physician assisted suicide) that persons without disabilities are not entitled to make.Family members, friends, and loved ones can and do influence the behavior of others. The strongest safeguard on the well-being of any person is to be involved in caring relationships in which people influence each other in non-coercive and non-manipulative ways.Choice should never be used to justify neglect, poverty, or an absence of realistic options. People do not choose to go hungry or be homeless. To people who might make bad lifestyle or spending decisions, we should be magnanimous.
How has the concept of choice been misused?
Increasingly, choice is used by some individuals and groups as a justification for the continued institutionalization of some people with developmental disabilities. What is usually meant by this is that parents and family members should have the option of deciding where and how their sons and daughters with disabilities should live. Although family members can play an important role in supporting people with developmental disabilities, they are not entitled to substitute their own interests and wishes for those of people with disabilities. The condemnation of institutions by organized self-advocacy groups testifies to the fact that people with developmental disabilities do not wish to be put away.The phrase “one size fits all” is sometimes quoted by proponents of institution to characterize the policy of community inclusion. Yet it is the institution—with well-documented patterns of “block treatment” and rigidity of routines—that epitomizes “one size fits all.” In the community, there is unlimited variety and opportunities to pursue life styles based on individual needs and preferences.
BULLETINS AND FACT SHEETS RELATED TO CHOICE AVAILABLE FROM THE CENTER ON HUMAN POLICY:
Policy Bulletin on Safeguards (1993) addresses how safety can be increased by strengthening community and improving the assistance people receive. It also discusses the paradox of regulations. (18 pages)
Fact Sheet on Self-Advocacy (1999) by Mair Hall briefly defines what self-advocacy is, provides a brief history of the Self-Advocacy/People First Movement, and includes a brief list of resources. (2 pages)
Fact Sheet: Summary of Self-Determination (1998) by Michael J. Kennedy and Lori Lewin summarizes what self-determination is and is not, the principles of self-determination, the values supported by self-determination, and a call for changes in the system in order for self-determination to truly succeed. (2 pages)
Fact Sheet: In Support of Families and Their Children (2000) by Nancy Rosenau discusses why children belong in families and how to assure families for all children. (2 pages)
Feature Issue on Institution Closures (Winter 1995/96) edited by Mary F. Hayden, K. Charlie Lakin, and Steve Taylor contains national information as well as a variety of articles on closing institutions written from the perspectives of self-advocates, professionals, parents, researchers, and policy makers. This bulletin was published through the Impact series of the Institute on Community Integration at the University of Minnesota in cooperation with the Center on Human Policy.
Fact Sheet: What is “Permanency”? (2000) by Nancy Rosenau describes the importance of permanency for children and discusses strategies to support and implement it. (2 pages)
Fact Sheet: The Community Imperative (2000) In 1979, the Center on Human Policy at Syracuse University wrote The Community Imperative, a declaration supporting the right of all people with disabilities to community living. The Center has reissued The Community Imperative in 2000 and invites endorsements from individuals and organizations.
Internet Resources Relevant to Choice
Advocating Change Together – http://www.selfadvocacy.com/
Self Advocates Becoming Empowered – http://www.sabeusa.org/
National Self-Determination Program Office – http://www.self-determination.org/
National Home of Your Own Alliance – http://alliance.unh.edu/
Institute on Community Integration, University of Minnesota – http://ici.umn.edu/
Steven J. Taylor, Ph.D. is Director of the Center on Human Policy at Syracuse University (email: staylo01@syr.edu).
Preparation of this article was supported in part by the National Resource Center on Supported Living and Choice, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133A990001. Members of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position of NIDRR and no endorsement should be inferred. Thanks to John O’Brien, Dick Jacobs, and Bonnie Shoultz for comments on a previous draft, and to Rachael Zubal for technical support.