Natalie is the definition of irrepressible. She views spinal muscular atrophy, the genetic disease that affects her central nervous system and requires her to use a wheelchair, as just another one of the challenges she thrives on tackling. Natalie runs her own web-design business, is an elite-level power soccer player and travels the world in her spare time.
However, she’s the first to admit that she needs a lot of help.
“Help with all personal care: Dressing, bathing, getting in and out of bed and my wheelchair, going to the bathroom. I also need help with preparing meals, so it’s really important that I have support,” she said.
Shortage of In-Home Healthcare Aides Affects People with Disabilities
Like many CICOA clients, Natalie, 32, struggles to find all the services she needs. In her situation, that means in-home assistance from healthcare aides. In the past few years there has been a shortage of qualified, quality staff, due in part to increased numbers of Central Indiana clients on Medicaid waivers, heightening the demand for aides.
Adding to the problem is an ongoing conflict between client needs and the modern-day healthcare reality. Because Natalie doesn’t want—or need—a caregiver around all day, she only requires short shifts from aides throughout the daytime hours to help with meals and personal care. Home healthcare staff typically prefer the longer shifts. While Natalie does need a longer, overnight shift to help her turn while in bed, that assistance also has been hard to find since aides ideally want to work in the day and closer to their own homes.
To top things off, Natalie’s situation was made even worse by COVID-19.
“The pandemic was rough,” she said. “I lost almost all my care attendants because I was trying to reduce exposure. Thankfully, my aide of 10 years could still come, and my parents don’t live far. My mom would, and still does, come over several times a day to help.
“But it’s been particularly hard to get staffed ever since the pandemic started. In addition to the help I get from CICOA, I use a home health agency to help with my staffing, and they don’t have enough people. My service plan is great, I just need quality, reliable people who will show up,” she said.
Independent Living with a Support System
A typical day for Natalie begins when an aide comes to get her ready in the morning, helps with using the bathroom, getting dressed and preparing breakfast. From there, she starts work on web projects for her varied client base. In the three years that she’s run the business from her home, Natalie has acquired accounts from roofing companies, dentists, mental health professionals, real estate advisors, heating and cooling contractors and lawyers.
”Always something different, which keeps it interesting,” she said.
In the early afternoon, another aide comes to help with a bathroom break and lunch. Natalie continues working for a few more hours before an evening aide comes to help with dinner, the bathroom and usually a shower. These aides are also the individuals who help her clean the house.
Finding Her Passion and Training for the Power Soccer World Cup
On her free evenings, Natalie likes to hang out with her boyfriend and other friends, traveling, going to movies and taking part in outdoor activities as the weather allows.
One of Natalie’s greatest passions is power soccer. She’s a member of the U.S. National Team and resumed training with the squad in April for the next World Cup competition in Australia in 2022.
Natalie has been playing power soccer since 2004.
“After about 10 minutes, I realized this was unlike any of the other sports I tried,” Natalie said. “This was truly independent and allowed me to release my competitive spirit.”
Team USA training requires her to do weekly drills on her own, then the team comes together every other month to work as a group. The training camps consist of three 12-hour days of non-stop soccer.
“The camps are mentally and physically exhausting, but it’s always an honor to play among the best,” Natalie said.
Able to Live a Full and Exciting Life
She is grateful to CICOA for its support.
“I especially appreciate the funds that helped me with vehicle modifications and home renovations. It really lessened the burden for me,” she said.
“I was able to redo my bathroom to make it completely accessible. Previously there was a step to get into my shower so I could never get my shower chair out. It’s beautiful now and so much safer,” Natalie said.
“And I love my care manager. She always makes sure I’m cared for and is on top of anything I might need.”
Natalie always looks for silver linings. In spite of the challenges in finding in-home aides, she approaches each day with confidence and security.
“I am almost fully independent. I drive my own vehicle, live on my own, run my own business and have traveled the world. Just because I’m in a wheelchair doesn’t mean I can’t live a full life,” she said.
Independence has a support system. Your gift to CICOA helps us advocate for seniors and people with disabilities so they can live with independence, dignity and a high quality of life.