Community Integration

As a society, we’ve come a long way in our acceptance and inclusion of individuals with Down syndrome. Let’s contrast two descriptions from Siegfried M. Pueschel, a physician who has devoted his career to working with persons with Down syndrome:

"Only 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:

"Thus, 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.


INSTANT FEEDBACK:
The role of the nurse in the adult’s life varies significantly, depending on the adult’s functional status.
True
False


The key components of community integration for an adult with Down syndrome include the following:

Support 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 individual’s right to self-determination and independence.


INSTANT FEEDBACK:
Nursing assessment of the adult client with Down syndrome should include information about access to quality medical care and reliable transportation.
True
False


Opportunity to make choices: In the past, adults with Down syndrome had decisions made for them, and things done to them. Today we know that it’s more appropriate to encourage the adult to make choices - about food, activities, social interactions, jobs, education. Of course, it’s 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.

INSTANT FEEDBACK:
The empowerment model of decision-making encourages excess dependence on the nurse.
True
False

Interesting, 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 person’s functional status, strengths, weaknesses, and interests can provide valuable input into the employment process.

INSTANT FEEDBACK:
Adults with Down syndrome generally find employment opportunities within a very narrow spectrum of the job market.
True
False


Opportunities 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 individual’s 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.

INSTANT FEEDBACK:
Social activities will be more successful if they are geared to the particular abilities and interests of the adult with Down syndrome.
True
False