WHAT IS CHOICE REALLY
ABOUT?
BY STEVEN J. TAYLOR
The concept of "choice" is discussed frequently in the field of
developmental disabilities these days. Yet the concept means different things to different
people, and is used to justify radically different 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?
Historically, people with disabilities and their families were offered few, if
any, choices in their lives. Families of children labeled with severe disabilities had two
options: to place their children in institutions or keep them at home with no publicly
funded assistance or education. Adults labeled with severe disabilities could be placed in
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 the
severity of the 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 not mean 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 individuals with funds
to arrange for their services and supports. 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-centered 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 to make choices about their lives. Some
people, however, may be limited in their ability to express their decisions. 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 peoples' 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 lifestyles 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 of the well-being of any person is to be involved in
caring relationships in which people influence each other in noncoercive 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 some times quoted
by proponents of institutions 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 un-limited variety and opportunity to pursue lifestyles based on individual needs
and preferences.
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.
The following bulletins and fact sheets related to CHOICE are 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 HaIl 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 SelfDetermination (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 selfdetermination, and a call for changes in
the system in order for selfdetermination 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 Closure (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 Related to Choice
Advocating Change Together http://www.selfadvocacy.com/
Self Advocates Becoming Empowered http://www.sabeusa.org/
National Program Office on Self.Determination http://www.self-determination.com/
Center on Human Policy http://soeweb.syr.edu/thechp/
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. Questions or comments regarding this article may be directed to Dr.
Taylor by e-mail at <staylor@mailbox.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. HI33A990001. 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. |
