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.