Growing up, Elizabeth Pode used various kinds of equipment in an effort to aid the symptoms that came along with having cerebral palsy, a group of conditions that affect movement and posture, according to the Mayo Clinic.
Being on her parent’s insurance till age 26, Pode had AFO braces, [Ankle-Foot Orthoses], elective surgeries, night splints and stem treatments at night. Even though she was previously on her parents’ insurance, there were still out-of-pocket costs associated with these treatments.
Since becoming an adult, Pode’s expenses have changed. She used to rely on forearm canes to help her walk, but now she relies on a walker. Pode serves as Assistant Director of Student Engagement and Success, Pepperdine Graziadio Business School at Pepperdine University in California.
“The particular walker that works best for me is not necessarily what my insurance wants to pay for,” she said. “My insurance will pay for one of those kinds that snap and have the tennis balls on them with two wheels.”
A national study by Stony Brook University professor Zachary Morris and his research team found that those with disabilities face a financial “squeeze” when it comes to additional costs for goods and services such as assistive technologies, home modifications, and extra transportation. Pode, like many others, have experienced those added costs in everyday life.
Pode is a pretty active person. She goes to a lot of places, where she needs to carry things and sit. She also needs brakes on her walker, when she is going up or down the hills. The type of walker her insurance covers is difficult for her to use and is not the right fit for her.
Pode prefers a walker from Costco or Amazon, but she has noticed the quality of the product has declined—which makes for more replacements, more often.
“Instead of every five years, it’s probably once every year that I get a new walker,” she said. “I was lucky that this year I was able to just replace the wheel of my walker, as my walker still had its warranty. After the warranty is over, you need to buy a new walker.”
Another expense that Pode has is her service dog, a yellow lab named Edge. Being that he goes with Pode to work, he needs to be bathed more often, which costs more money. Also Pode has vet bills, food expenses, and on occasion needs to buy new equipment for him, such as a leash or a vest. So, the costs can stack up.
“It’s owning a pet, but it’s also owning a piece of medical equipment,” she said.
Briana Raucci discussed the high cost of living for people with disabilities. Photo courtesy: Briana Raucci.
Briana Raucci is another person that has always navigated the disability landscape—having multiple disabilities, including cerebral palsy, epilepsy, endometriosis and ADHD to name a few. Due to having varying disabilities, she is unable to work in a traditional 9-5 full-time role. From Branford, Conn., she works full-time as a freelance film wedding photographer and graphic designer. She believes that her expenses have been very high as a disabled person.
“There’s still a gap,” Raucci says. “We’re expected to have all these extra expenses, while we are not able to work the normal amount an able-bodied person can work.”
This year, Raucci decided to go on Medicaid because the costs of her medications were getting to the point where it was too much to bear, financially. For Raucci, Medicaid covers most of her appointments and medications. A treatment that she believes was very helpful for her was acupuncture—a type of treatment that is not covered and she has to pay out of pocket.
“There’s such a large gap between what you are able to make and what you have to spend,” Raucci says. “Everything is so expensive right now.”
Before she was on Medicaid, Raucci used to have to pay out of pocket for seizure medication for the past 10 years, which was not covered by insurance. She did the math, and found out that the money she was having to spend was enough to buy a house.
For those with disabilities going through similar situations, Raucci has some advice to share.
“Try to remain positive, it’s very difficult especially in this political climate, because we are seeing our rights being stripped away,” Raucci said. “Our current government is trying to make us feel defeated. I think they want us to think there is no way out, so I would say try to hang on to your positivity, try to hang on to hope and don’t let go of that.”
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