There are many stories of success for people with disabilities. For example, the woman who was recently
appointed to the President’s Council on People with Intellectual Disabilities
and the man who achieved his personal goal of working with the Red Sox. There are more common stories like the woman
who grew up in a ward in an institution and now lives in an apartment she
decorated herself with the money she earned working at a local restaurant … or
the young man who no longer takes psychotropic medications or is subjected to
physical restraint because someone listened and designed his services and
supports.
Unfortunately, there are far too many stories about people who are
not leading self-directed lives with services and supports that are flexible
and responsive to their changing circumstances.
Our goal for person-centered supports and services is to support
people to have autonomy and control over their lives. Self-Advocates Becoming Empowered (SABE) has
described it this way "speaking up for our
rights and responsibilities and empowering ourselves to stand up for what we
believe in. This means being able to choose where we work, live, and our
friends; to educate ourselves and others, to work as a team to obtain common
goals; and to develop the skills that enable us to fight for our beliefs, to
advocate for our needs, and to obtain the level of independence that we
desire." (1996)
Sometimes even the most successful organizations are challenged in
everyday practice to meet their mission and values of being person-centered. The use of language and policy can provide
clues to the gaps between vision and practice
Do staff sometimes
explain that their job is to “allow” people to make choices? The word “allow” is not empowering, it is
limiting.
The real intent of person-centered supports and services is to
embrace the fundamental premise that people are capable and willing to make the
best decision for themselves.
Do people sometimes
have behavior support plans to address behaviors that someone else determines
are problematic, defines success and provides reinforcement? Actually,
person-centered behavior supports are in response to behaviors the person
genuinely wants to change and/or are clearly dangerous or interfere with the
opportunities for participation in community life.
Do staff sometimes
identify someone as “my person” or “DD individual”? Person-centered
supports and services recognize that people are unique and valued community members who are in charge of their
own lives.
Consider other organizational practices and whether they are in
line with person-centered values:
- Keys—Who has a key to the person’s home? Who uses the key?
- Money—Does the person have the same access to
their money that most people have? Can
they get their money when they want… or do they have to ask and then wait until
the next day?
- Telephone—Who answers the phone? What do they say when they answer—Hello? Or
the Organization’s name? Who checks the
messages? Who carries the cell phone?
- Food - Who prepares the menu? Who approves the menu? Who changes the menu? Who shops?
- Staff—Who hires the staff? Who trains the staff? Who evaluates the staff?
Being a person-centered organization that
supports people to lead enviable lives is challenging. It requires more than changing language and
practices, but changing language and some common practices is a start to
changing attitudes.
Watch your thoughts; they become words. Watch your words; they become actions. Watch your actions; they become your habits. Watch your habits; they become your character. Watch your character; it becomes your destiny.
- Unknown
Resources
www.disabilityisnatural.com founded by Kathie Snow, this website focuses
on new ways of thinking, language, and common sense.
http://www.rwjf.org/pr/product.jsp?id=17885 Robert Wood Johnson Foundation; Self
Determination for Persons with Developmental Disabilities.
http://www.sabeusa.org/Self Advocates Becoming
Empowered (SABE)is
the self-advocacy organization of the United States.
http://www.normemma.com/nkevbio.htm Norman Kunc and Emma Van der Klift have spent
the last 25 years working to ensure that people with disabilities are able to
take their rightful place in schools, workplaces, and communities.