If You Can’t Stand Up, Stand Out!

Written By: Cory Woodard
August 6, 2010

It is two days before I am supposed to move into my apartment and begin my third year of college at the University of West Georgia, but that may not be happening now as of yesterday. I have been looking forward to beginning this year and have had my classes picked out for months, tuning my schedule down to the perfect one. I even have plans to audition for the theatre department mid-August. The problem is not the tuition finances or other circumstances that normal college students may encounter- the problem is that I need a caregiver because I am in a wheelchair and cannot take care of myself without daily assistance.

I have Spinal Muscular Atrophy, which is a form of Muscular Dystrophy. This disease prohibits me from walking and makes my muscles much weaker than the average person’s. On a daily basis I need help showering, transferring to my wheelchair, driving to and from campus, cooking meals, taking medications every night and even turning in bed throughout the night to alleviate pressure sores. As one can see, this is a lot of work and would require a 24-hour service from a caregiver.

As mentioned, this is my third year of college. For the first two years I had personal caregivers that I knew previous to beginning school. During my first year I attended The George Washington University in Washington, DC and my best friend since kindergarten decided to move to DC with me and be my caregiver. Once that year was over, after much contemplation, I decided to transfer to West Georgia since it would be closer to my family and I could use my insurance in Georgia, whereas I could not in DC. My body was also acclimated to the Georgia weather and seemed to handle it much better than it did in Washington, DC. So for my second year I had a different caregiver, but one that I did know as well. That caregiver chose not to return for my third year so I decided that I would go with an agency that provided home-health services instead of relying on another individual.

For people with disabilities there is a service known as Vocational Rehabilitation that provides funding to caregivers and overall, helps disabled students attend college. I used Vocational Rehabilitation for the first two years and they were a great help. They paid for my personal caregivers, the caregiver’s housing and for their food in a monthly stipend check. I really cannot emphasize how much this helped me be able to attend college.

In preparation for the upcoming school year I had a meeting with my local counselor at Vocational Rehabilitation toward the end of June. My counselor assured me that they would be paying Robin’s Nest (a caregiving agency near my university) ten dollars per hour, twenty-four hours a day, every day of the week. My mother, who was also at this meeting, and myself felt confident and ready to prepare for the move-in.

At this first meeting even my counselor’s supervisor from the Atlanta office was on speaker-phone with us to discuss everything. My mother and I repeatedly made sure that they would pay the agency the amount specified for a twenty-four hour period.

So in the following weeks my mother and I met with Robin’s Nest to meet the caregivers that would be tending to me, signed year-long leases for my apartment near the university and I even befriended my soon-to-be caregivers on Facebook. I was completely set and excited to start the new year until my mother received an email on August 5th, three days before move-in.

The email from my local Vocational Rehabilitation counselor stated:

I have spoke with [the boss in Atlanta] and she is okay with the pay rate, however, she only wants to pay each attendant for 8 hours based on the fact that Cory will be in class part of the day when the morning person is there and he will be sleeping some of the time when the evening person is there.

Basically the email is saying that they will only pay for eight hours per day, whereas I was previously told that they would cover twenty-four hours per day. Immediately my mother called the supervisor to find out why the situation had now changed from what we previously discussed.

During the conversation, the supervisor reinforced that they would only pay for eight hours of service because I would be in class for part of the day shift and I would be sleeping part of the night shift, so it would be pointless to pay someone to sleep she said. The fact is, however, that I do indeed need twenty-four hour care. While I am in class, what if I need to use the restroom? When I am asleep at night, who is going to roll me over when I need to be turned? The caregiver would still be working during the night. The supervisor said that she understood this and she wanted to hire an agency for twenty-four hour care, but only wanted to pay for eight hours of service.

As one can assume, no person in their right mind is going to work and not get paid for it, and that is exactly what Vocational Rehabilitation is wanting – free service. Well, wouldn’t we all like to have that?

I do appreciate all that Vocational Rehabilitation has done in the past, but the fact is, they promised me something and then took it away right before I was scheduled to move in. Now my mother and I are stuck between funding that agency ourselves (which is impossible) or me staying at home this semester/year and taking online classes. Even if I did the latter option however, I would need to have a caregiver at home since my mother works full-time and that is not available either. My mother has always told me “If you can’t stand up, stand out!”, but in this circumstance it is difficult to “stand” at all.