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4.1.1 Directing Care & Asking for Assistance |
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Louisiana Statewide Transition Project and Louisiana: Healthy and Ready to Work Fact Sheet Series |
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7/28/99 |
I. WHY IS THIS IMPORTANT?
Many young adults say that they would like to
be independent. However, independence is a very vague goal. If one were to ask
most people to describe what it means to be independent, responses would
probably relate to the idea of self-sufficiency. In reality, very few people
are truly independent. Virtually every person depends on others to assist
and/or support them in at least some daily tasks. Moreover, doing a task
oneself is not always the most efficient way of achieving goals. Therefore,
perhaps independence is not the accurate description of what young
adults hope to achieve. Rather, striving for interdependence will allow
young adults to take an active role in working towards their goals, calling on
the assistance and/or support of others when needed in order to help attain
these goals. This is especially important when young adults require assistance
with hygiene and personal needs. By knowing how to direct their own care, young
adults can exercise more control over their lives.
II. KEY POINTS
There are many skills that young adults who
will be directing their own care will need. First, young adults must know with
which tasks they need assistance and/or support. By conducting a personal needs
assessment, they can identify these tasks and compile information about them to
share with those individuals who will be providing the assistance and/or
support. For each task, the young adults should list the type of
assistance/support required, the level of assistance/support required, and the
amount of time needed to complete each task. By having a clearly defined set of
tasks that is shared ahead of time with the person providing
assistance/support, young adults can avoid confusion or misunderstandings.
Next, the ability to communicate effectively
with others is critical. Young adults must be able to communicate with those
individuals assisting/supporting them in order to get what they need.
Communication must be clear, precise, and assertive. Young adults must take
responsibility for making their needs known and for providing feedback to those
providing assistance and/or support to them. However, expressing needs clearly
is not the only way to effectively communicate. By listening carefully to what
the other person is saying, young adults and those individuals
assisting/supporting them can also avoid possible misunderstandings and
confusion.
Finally, young adults must be comfortable
with themselves in order to direct their own care and/or ask for assistance. It
is not easy to ask for and accept personal care from another person. Mainstream
Magazine (Polette, 1997) asked several people who direct their own care to
offer suggestions to make the process easier. Young adults may find the
following suggestions helpful:
·
Try to be confident and
comfortable with your body. This will take time.
·
Be patient and relaxed.
This will alleviate some of the nervousness that the person providing
assistance or support will feel.
·
Be clear when expressing
needs, but be reassuring at the same time.
·
Try not to have a friend
provide the support or assistance needed with personal needs.
Many young adults hire Personal Care
Attendants (PCAs) to provide support and/or assistance with personal needs. For
more information on PCAs, see the fact sheet 4.2.0 Personal Care Attendants.
III. ROLES/NEXT
STEPS
Student/Young Adults:
The ability to accept assistance and support
from others can give young adults control over their lives. Young adults should
conduct a personal needs assessment in order to identify and define their
personal needs. They should make sure that those supporting them in their
transition to adulthood know about these needs and help plan to get these needs
met.
Communication skills are critical when
directing care and asking for assistance. Only by expressing needs clearly,
listening carefully, and following up afterwards can young adults be sure that
their needs are heard, understood, and acted upon.
Self-advocacy and self-determination skills
can be very helpful when others provide assistance or support with personal
needs. Young adults must learn how to articulate what they want and/or need and
also know how to advocate for themselves to get it. By learning and practicing
self-advocacy and self-determination skills while still in high school, young
adults can gain the experiences needed to exercise maximum control over their
lives.
Families:
Families must realize that most young adults
want to be as self-sufficient as possible. It is important to remember that the
role family members play in care giving will change as the young adult gets
older. Families can help young adults move towards their goal of
self-sufficiency and interdependence by encouraging them to take a more active
role in directing their care and asking for assistance.
Families should encourage self-advocacy.
Families must recognize that young adults need to develop skills that will
enable them to make things happen. By encouraging young adults to speak for
themselves and to make decisions for themselves, families can better support
their sons/daughters reach their goals of self-sufficiency and interdependence.
Families should ensure that personal needs
and hygiene are addressed at meetings during which the transition to adulthood
is discussed. By helping the young adult express future assistance/support
needs to those helping them plan for the transition to adulthood, families can
help assure that appropriate actions are taken to enable him/her to be
self-sufficient and interdependent.
Agencies:
All agency personnel involved in transition
planning should support young adults in their quest to be self-determined and
interdependent. By listening to young adults and respecting their thoughts,
opinions, and dreams, agency personnel can help young adults advocate for
themselves and reach their goals. Local education agencies (LEAs) and adult
agencies can offer self-advocacy/self-determination training to young adults.
These skills are very useful when directing care and asking for assistance.
When requested, all adult agency personnel
should attend Individualized Education Program (IEP) meetings at which transition
to adulthood is discussed. LRS counselors, OCDD personnel, and others have
valuable information about services offered or programs available (including
PCA services) that can help young adults have their personal care needs
addressed.
IV. REFERENCES
Myers,
April M. (1998). Personal Assistance Services [On-line].
New Hampshire Self-Determination Project
(1998). Frequently asked Questions about Self-Determination [On-line].
Available: via the Internet at http://www.state .nh.us/sdp/faqs. html
Polette, Lisa (1997). Private matters: When
you lose control over basic bodily functions, how do you cope with having
someone else helping you? Mainstream Magazine, December 96- January 97
Ed. [On-line]. Available: via the Internet at http://paraquad.org/private.htm
Resolution On Personal Assistance Services
Passed By Participants Of the International Personal Assistance Services
Symposium Sponsored by the world Institute convened September 29 to October 1,
1991 in Oakland, California, USA [On-line] Available: via the Internet at
http://soeweb.syr.edu/thechp/pasres.htm