Students shed light on independent living with a disability


Cindy Om

Source: Centers for Disease Control and Prevention

By Elyssa Kaufman, Staff writer

Stephanie Gallo wakes up every day and completes her morning routine not once, but twice. The second time is with Maddie Stark, senior in Business, who has Spinal Muscular Atrophy (SMA).

Stark requires a personal assistant in order to live on campus. Through working together, Gallo and Stark have created a bond that goes beyond any normal morning routine.

Stark requires a power wheelchair to get around campus due to SMA, a muscle weakening disease. Her personal assistant, Gallo, is available during the day or at night to ensure Stark can live comfortably on campus.

The Disability and Health Data System reported that 3.6 percent, or about 11.5 million people, had a self-care disability in 2014 out of 318.9 million people in the U.S. It was reported that around 380 thousand out of 12.8 million people in Illinois had self-care disability. The data for the Champaign area was not reported.

The DHDS defined self-care disability as a disability leading to a difficulty in tasks such as dressing or bathing on a day-to-day basis.

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Gallo decided to become a PA on campus to provide training for a future career in the medical field.

In order to apply for physician assistant school after college, Gallo said she needs to have a certain number of hours in “patient contact.” Working as a PA for a student with disabilities on campus was an opportunity to fulfill her requirement.

“It is a great opportunity because, first of all, it is one-on-one patient contact, and it’s pretty flexible as far as times,” Gallo said.

Stark said her PAs help her with activities of daily living, including dressing, bathing, transferring, eating, etc. Stark works with different PAs about five to seven hours a day. These hours are broken up throughout the day into morning, lunch, dinner, bed and overnight shifts.

“I am not able to walk so PAs need to be able to lift me to transfer me from different places,” Stark said. “My muscles are also very weak due to my disease, so lifting my arms and legs is very difficult and I need assistance.”

During the night, Stark requires assistance when turning and changing positions.

Gallo typically works an overnight shift when she’s with Stark. This means arriving around 11 p.m. and staying the night on the couch in Stark’s apartment. Through a monitor, Stark can call Gallo for help.

“I can help her rotate positions in bed or take her to the bathroom in the middle of the night — then I’m just there for anything that might come up for her,” Gallo said.

The night shift is just one of the shifts Gallo tends to work. She said there are other PA shifts she can take on that involve bathing or helping with a morning routine. This involves waking Stark up, assisting with transferring her in or out of the chair, washing her face, brushing her teeth and getting her dressed.

Gallo said Stark is very understanding of her schedule. She said that because she is working for just one other person, between the two of them, they communicate pretty often. Gallo also coordinates with other PAs to adjust shifts.

“It works out really well, and it’s an awesome job to have while you’re also a student on campus,” Gallo said.

Gallo first discovered the PA job when a friend recommended working for Stark. Gallo then shadowed her friend while she completed a shift with Stark, giving her the opportunity to meet Stark.

There is actually no training, which Gallo said surprised her when first applying. Gallo did have her Certified Nurses Assistant (CNA) certification before becoming a PA, which she believes helped her in the process.

“I learned some things in the (CNA) certification class with regards to proper lifting techniques, and I was familiarized with working with patients,” Gallo said.

Gallo said PAs can be helpful even without training because the person they work for is able to communicate his or her needs.

“The lack of training or certification, in this case, I don’t think it affects the quality of care that PAs can provide. I was glad to have a little extra training because it helped ease my transition.” said Gallo.

Gallo explained Stark can guide her through the process of her everyday tasks. For example, Stark reminds Gallo to check the wheels on her wheelchair before going out for the day.

“Verbally, she can tell you what your next step is, how to do something, how to lift her,” Gallo said. “She can remind you of things you might forget.”

Gallo said because she views her schedule as flexible, she can help Stark at different times and is sometimes randomized. Gallo makes it clear that Stark can call her or other PAs throughout the day as well.

“We are always willing, if we can or are not in class, to go over and help out,” Gallo said. “She’s dependent on our schedules and so just knowing that we are able to maybe make that easier for her, we are being as accommodating as possible.”

Making the schedules work is vital for Stark because she said without Gallo and her other PAs, she would not be able to even get out of bed.

Stark said the PAs are an extremely important component in her daily life.

Stark and Gallo’s relationship is special because they have become friends, which is not always the case, according to Stark. She has had both positive and negative experiences while working with her PAs.

“Most of the PAs I have are really personable people, and we end up talking through the whole shift,” she said. “Since PAs get to know you very intimately, due to the nature of the tasks, it’s nice to just have conversations with them about random things.”

Stark said that while she does get to know her PAs on a personal level, she has also had issues when hiring the right PA for her needs. She explained this has led to a more negative experience.

“One instance I remember was a few years ago, and the problem that happened was the PA was not honest about her abilities to assist me when I interviewed her,” Stark said. “She was not able to safely transfer me and then she informed me that she had a bad back.”

Stark said this caused her to lose trust in her PA, which is important in a relationship with a PA. Luckily, Gallo and Stark have the trust needed for their PA-student relationship to work.

“I would say anytime I’m there with Stark it’s like we are hanging out,” Gallo said. “It’s more of a friendship bond, and while we are spending time together, we happen to be doing activities like brushing her teeth or something like that.”

Gallo said within the first ten minutes she arrives to meet Stark, the two are catching up and talking. They watch television together, and Gallo said it’s a very enjoyable job.

Gallo also said she thinks everyone who is a PA enjoys the profession because PAs build strong relationships with the students they work with and visa versa.

While working with Stark, along with other students with disabilities on campus, Gallo has seen and heard about the issues these students face. When you are not in a wheelchair, you do not think about these issues that might occur.

“It really helps me gain the perspective of someone who has a different situation than I do,” Gallo said.

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