As a society, weve come
a long way in our acceptance and inclusion of individuals with Down syndrome.
Lets contrast two descriptions from Siegfried M. Pueschel, a physician who
has devoted his career to working with persons with Down syndrome:
a few decades ago, many youngsters with Down syndrome were viewed as eternal
children. They were
not provided with the opportunity to become responsible
citizens in an accepting society. They were not permitted to unfold their personal
capabilities for independent and productive adult lives." (Pueschel, 2001)
Contrast that picture with
one from today:
individuals with Down syndrome should be allowed to participate in all aspects
of community life. The degree to which they can do so will, of course, depend
on their individual mental and physical abilities. Often, they will need support
from friends, relatives, neighbors, and others who can augment their development
of independence and competence. Effective independence will only be developed
if people with Down syndrome have access to opportunities and options that will
permit them to live life as they desire to do so." (Pueschel, 2001)
Community integration for
an adult with Down syndrome is a highly personal matter, reflecting the interests
and abilities of the individual as well as the public and private resources
that are available in the community. Some adults with Down syndrome live fairly
independent lives, supported by family members or case managers who monitor
important issues like employment, finances, and health. Others are more dependent
on paid staff or family members for the basic activities of daily living. In
all of these settings, nurses play key roles as nurse case managers, direct
care providers, public health nurses, or as employees of public and private
agencies serving adults with disabilities.
role of the nurse in the adults life varies significantly, depending on
the adults functional status.
The key components of community
integration for an adult with Down syndrome include the following:
for basic needs: Adults with Down syndrome have the same basic needs for
food, shelter, and safety as other people do. Access to high-quality medical
care is crucial, especially in light of the many health risks of this population.
And access to good, reliable transportation is necessary so the adult can go
to and from work, social activities, appointments, and other activities. Quite
simply, nurses who work with adults with disabilities can tip the balance between
success and failure in a community setting. By ensuring that the adult has the
basic necessities, nurses affirm the individuals right to self-determination
assessment of the adult client with Down syndrome should include information
about access to quality medical care and reliable transportation.
to make choices: In the past, adults with Down syndrome had decisions made
for them, and things done to them. Today we know that its more appropriate
to encourage the adult to make choices - about food, activities, social interactions,
jobs, education. Of course, its easier to make the decision for an individual
than to teach, support, and coach that person in the decision-making process.
The nurse who works closely with the adult using an empowerment model to guide
effective decision-making will be a valuable asset on the road to independence.
empowerment model of decision-making encourages excess dependence on the nurse.
life-sustaining work in which the adult grows as an individual: Just as adults
with Down syndrome vary greatly in their functional abilities, so do they differ
in the type of work they can perform. Some notable adults, like Chris Burke of
"Life Goes On" fame, are poised public figures. At the other end of
the spectrum, some adults have severe medical, psychiatric, or cognitive issues
that preclude employment. In the middle are the thousands of adults with Down
syndrome who have rich and varied employment opportunities. Nurses who are familiar
with the persons functional status, strengths, weaknesses, and interests
can provide valuable input into the employment process.
with Down syndrome generally find employment opportunities within a very narrow
spectrum of the job market.
for an active social life: Adults with Down syndrome have a range of friendships
just as other adults do. Some have a few close friends to hang out with, while
others need highly-structured outings and activities. Social activities geared
to the individuals abilities and interests will be the most successful.
Nurses working with this population should either have a comprehensive knowledge
of community recreational options, or put the adult in touch with someone who
can provide that linkage.
activities will be more successful if they are geared to the particular abilities
and interests of the adult with Down syndrome.