Age and Disability Odyssey
Conference
by Julia Socha
I attended the Building Together:
the 2005 Age and Disabilities Odyssey Conference through a scholarship
registration from the Department of Human Services and Courage Center.
My vacation leave from work was reaching the maximum level for use
or lose (again), and with no vacation for the Socha family in sight,
I decided to take some time off for professional development. When
I saw the The 2005 Age and Disabilities Odyssey Conference program
and found out about available scholarships to attend, I knew this
was an opportunity right up my alley. The conference was hosted in
beautiful Duluth and covered topics that I was already in the process
of exploring; it would give me the chance to do something very worthwhile
with my vacation leave.
Professionally, I coordinate
the Institute on Community Integration’s
Community Advisory Council. The subject matter that would be presented
was exactly what I was looking for as I begin to design topics related
to aging and disability for our Council.
Personally, I have wanted to know what I have to look forward to
as a person living with a disability and aging (some days more rapidly
than others)! In addition, my family has also become aware of the
need for total family involvement in coordinating resources and support
for a family member who has a chronic health condition/disability.
My uncle was among many folks who were able to move out of a nursing
home facility with assistance from the Metropolitan Center for Independent
Living. He had a period of time where his health was declining, his
muscle spasms were increasing (he has quadriplegia), and changes
were taking place with his kidney function. None of us ever imagined
that he would spend any time in a nursing home. We always imagined
that the PCA services he received would be enough to sustain his
recovery after he was discharged from the hospital. We anticipated
his needing an increase in service hours only.
Unfortunately, he could
not secure regular and consistent support in his home. As a family,
we tried to reassure him that the nursing home recovery period
would only be temporary. It lasted much longer than anyone anticipated.
He lost the apartment he had been living in due to his length of
stay in the nursing home. The folks at the nursing home were fabulous,
and the care was very good, but it simply was not his “choice” to live there. He made his needs
and wants known while in the nursing home. And the staff and others
listened, although they didn’t always know what to do to get
a process started. He kept talking, they kept listening, and a plan
developed. He now lives in an adult home setting with others who
are active like he is and who have the same goal—to live the
best life possible. He has also just accomplished getting his very
first accessible van with a ramp.
By attending the Age
and Disability Conference, I learned how our process of family
support could have been easier and more organized. The Families
as Caregivers session on how to recognize key signs of when a “family meeting” is necessary showed me thatwe
could have done much more to keep everyone on the “same page” and
organized in the division of assignments to ensure follow up could
be easily done. Sometimes it became an issue of “who was on
first—and who was doing what!” At times our planning
process was “mass chaos” and it did not need to be that
way.
Another excellent presentation
at the conference was on Telehealth. The title itself excited me
as I enjoy any process that can make managing healthcare easier
and more practical for the consumer. In this session I learned
some very valuable information on how Telehealth technology saves
money. Equipment is installed in a consumer’s
home that makes it possible to have many tests done, reviewed, and
discussed by phone with a nurse coordinator, who then communicates
with the primary care doctors and attending physicians.
This has become a very cost-effective way to avoid the numerous
visits of private duty nurses, who would have to come almost daily
to do monitoring that can be easily done by phone. Not only is this
an awesome use of technology for rural settings where transportation
to and from hospitals, clinics, and other health care locations can
be costly and difficult, but it is also a cost-saving measure overall.
Research has shown that individuals can recover more quickly in their
own home setting. This is one very unique way of speeding up the
recovery process and staying under daily observation.
I was also reminded about services and supports that are available
as a last resort when other options may not be available. One of
these is the Consumer Support Grant. I had forgotten all about this
as an option when waiver eligibility is not possible or when spaces
for waiver allocations do not exist. This was a very valuable reminder
for me.
One concern I have (and
that I have started to research) is how youth with disabilities
in the foster-care systems are faring when oftentimes some of these
grants and programs are stated as not being available to them under
the eligibility requirements. I have been made very aware of the
need to look into these issues further and to really find out how
families who are providing foster-care support to individuals with
disabilities are being affected—either
positively or not-so-positively—and what we can all to do enact
systems change to help these families.
As a result of attending
the conference, I feel I will be much better prepared as a consumer
and as a person who will hopefully be able to assist others find
needed sources of support when the time comes—and
needs arise. I can look forward to my life as an “older adult” and
be assured that people are thinking and planning for the support
needs for all of us in the future.
The conference also very quickly made me aware how valuable it could
be to align our disability community with the aging population. We
can join forces and assist one another in advocating for needs that
have yet to be met.
I (as well as many others) look forward to the conference again
next year.
Julia is a Community Program Associate with the Institute on Community
Integration (UCEDD) at the University of Minnesota.
