What Self-Determination Is and What it Is Not
||Self-Determination is NOT a model or a
program with a predetermined menu of available services and a set way of
||Self-Determination IS a process that
differs from person to person according to what each individual determines is
necessary and desirable to create a satisfying and personally meaningful life.
Persons with disabilities no longer have to receive services as determined by
the traditional model. They are free to “order off the menu”
including those services they desire to be provided in ways that meet their
||While traditional programs are “person
centered,” Self-Determination is person directed. It acknowledges the
rights of people with disabilities to take charge of and responsibility for
their lives. In Self-Determination, the individual, not the service system,
decides where he or she will live, and
with whom; what type of services he or she requires, and who will provide them;
how he or she will spend his or her time, which may include the type of
vocational and/or educational opportunities he or she wishes to engage in, and
how he or she will relate to the community, which may include joining in
community events, taking part in civic groups, and developing and maintaining
relationships with others in the community.
The Principals of Self-Determination
||Freedom - The ability for persons with freely
chosen person and/or friends to plan a life with necessary support rather than
purchase a program.
||Authority - The ability for a person with a
disability (with a social support network or circle if needed) to control a
certain sum of dollars in order to purchase services.
||Autonomy - The arranging of resources and
personnel - both formal and informal - that will assist an individual with a
disability to live a life in the community rich in community affiliations.
||Responsibility - The acceptance of a valued role
in a person’s community through competitive employment, organizational
affiliations, spiritual development, and general caring of others in the
community, as well as accountability for spending public dollars in ways that
are life-enhancing for persons with disabilities. (From: Thomas
Nerney and Donald Shumway, Beyond Managed Care: Self- Determination for Persons
with Disabilities, September, 1996.)
Values Supported By Self-Determination
||Respect - Self-Determination, by its nature,
recognizes that persons with disabilities are valuable, capable persons who
deserve to be treated with respect. Respect is more than politeness and paying
lip service. It is acknowledging the individual's value as a person, seeing his
or her strengths and abilities, granting him or her the same consideration we
each desire, and holding him her in esteem.
||Choice - Choice is central to
Self-Determination. Many times people with disabilities have very limited
choices. They often cannot choose very important aspect of their lives, such as
where they live, with whom, how they will spend their time and their money, and
sometimes even what they eat. At other times, selections are limited. For
instance, individuals may be able to choose who their roommate will be, but not
whether or not they will have one. True choice is being able to pick from the
same wide variety of lifestyles, goals, and individual preferences most people
|| Ownership - Self-Determination not only
supports person with disabilities having more choices in their lives, but
ownership of their lives. Ownership implies more than just decision making. It
means that the individual is the final and total authority-the boss. While most
people are supported in the decision-making process by a circle of support,
Self-Determination give the person the final say. Ownership give him or her
control over his or her life and services. He or she may hire, manage, and if
necessary fire those who provide services. It also give him or her control over
the management of his or her financial affairs. Ownership also mean that the
individual accepts the responsibility for his or her actions and decisions,
including spending public monies conservatively.
||Support - Support is a keystone to making
Self-Determination work. Most people have some type of a support network in
their lives which they turn to when they must make an important decision or
take a step forward in their lives. Persons with disabilities are no different.
However, before Self-Determination, those person who helped establish goals and
devise plans are mostly paid workers who in many instances were assigned rather
than chosen. In Self-Determination the individual selects and invites each
member of his or her circle of support. They can be family members, friends,
people from the community-anyone that the person desires. Most importantly,
they are people with whom the individual has or wishes to build a trusting
|| Opportunity - Many persons with disabilities
have had only limited opportunities to experience many aspects of life.
Self-Determination expands those opportunities allowing and encouraging
individuals to explore the possibilities that are present in their communities.
Since they are able to spend their funds in ways that they now choose, they are
able to take part in events and activities that previously were unavailable.
When someone has had limited experience, it may be difficult for others to
allow him or her to take risks. However, opportunity also includes the ability
to take risks, to make mistakes and to grow from them.
Self-Determination Call for a System Shift
If Self-Determination is going to
be successful, it requires that those who supply services and fund them make
certain changes in both the way they think about persons with disabilities and
the way they serve them. Without a shift in the service system, no philosophy
can truly support person with disabilities become self-determinating
individuals. In order for this to happen, the system must shift
- From seeing persons with disabilities as having
limitation that prevent them from participating fully in life to seeing them as
valuable citizens who have many talents, strengths and abilities to contribute
to their communities.
- From seeing persons with disabilities as service
recipients to individuals with rights and entitlements.
- From providing person-centered services to supporting
- From systemic and agency control of financial resources
to individual control.
- From control to empowerment.
A Final Thought
“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” (Kennedy,
“Self-Determination and Trust” My Experiences and Thoughts.” p.
Michael Kennedy & Lori Lewis, Staff Associates, Center on Human Policy, 805
S. Crounse Ave, Syracuse, NY 13205