Litmus
Test for Measuring Quality of Life
"People on the Go",
a consumer advocacy group for individuals with mental retardation, has developed
a list of questions that they call the litmus test for measuring the quality of
life. These questions can provide a valuable framework for the nurse working with
adults with Down syndrome, and should be used whenever new community services,
options, or resources are presented to the adult:
- Did you ask me?
- Can I change my mind?
- Can I say ‘no’
and still receive services?
- Will I be safe?
- Is my health protected?
- Do I have privacy?
- Are my rights, dignity,
and individuality respected?
- Am I spending time the
way I choose and with the people I choose?
- Can you give me what
you promise?
- Will you help me learn
how to be a part of the community?
- Are you providing me
the opportunities that support my choices?
- Does the service make
sense?
- Can I get the service
if I move?
- Would I want it?
- Does the service increase
my opportunities?
- Does the service help
me look good to others? (Kiernan, 1995, p. 285)
Instant
Feedback:
Before offering a service or other resource to the adult
with Down syndrome, the nurse should consider the questions in the litmus test
for quality of life.
Another
organization, The Arc, defines themselves as "The National Organization
of and for people with mental retardation and related developmental disabilities
and their families."
You can download their free documents very easily; just fill in their short
form and then click to download. Just a few topics include: aging with mental
retardation, The Americans with Disabilities Act, voting, sexuality, employment,
and finances.
The first
document on their list "10-10" is a four page checklist developed
by family members and professionals to help people determine if their family
is receiving quality supports. It includes a definition of family support and
tips for working with professionals.