#EveryoneDeservesCare: Cynthia's Story

June 29, 2022 / #EveryoneDeservesCare

Cynthia Fox knows firsthand just how starkly different life is with and without direct care workers, particularly, with and without the independence these workers provide.

She became quadriplegic at age 22 and spent the first 10 years of her life as a disabled woman in a nursing home. Her parents were not equipped to navigate her care, which includes a ventilator, and the only nursing home that would take ventilator patients was half an hour away from her hometown.

“I really thought I was going to die there,” Cynthia says. In many cases, the staff to consumer ratio in nursing homes is just not enough to provide adequate care, especially for those with complex needs.

Things changed when Cynthia met her boyfriend, Steve, and the two decided to move in together.

“When I got to my apartment, I was so unfamiliar with being out of the nursing home and independent living out in the community it was like a whole new world,” Cynthia remembers. “I said to my nurse are you able to wash my hair every day? And she laughed and said, ‘Of course!’ But that was a luxury to me.”

Cynthia and her caregivers quickly found their routine and became like a family, working together like a well-oiled machine. Aside from assisting her with daily living tasks like transferring in and out of bed, eating, bathing, and toileting, her care workers also empowered her to build a life in the community. She got to go shopping, attend family gatherings, she went to her five-year class reunion, took her dogs to training classes, developed crafting hobbies, started volunteering with a dog rescue by helping with their fundraisers, and more.

“It was just like a whole new world. I was on a vacation that didn’t stop,” Cynthia says of life in the community versus in the nursing home.

When Cynthia has the full care that she needs, it requires a team of six to seven caregivers. These days, Cynthia is down to just three nursing assistants and the support of her boyfriend, who is also a nurse. One of her nursing assistants has been with her for 10 years.

While Cynthia’s small but dedicated team is able to provide her care, she worries deeply about the sustainability.

“We’ve all grown to age together,” she says. “I see the toll it’s taken on them physically and mentally. I see that turning me in bed is hard for my aide. Lifting me up out of my wheelchair is difficult for Steve. Every day even if I’m having a good day, or it’s always in the back of mind that somethings going to happen and they’re going to try to put me back in the nursing home. I have this fear every day.”

“Every day I’m afraid that I’m going to get an email from [one of my aides] saying that she’s gonna quit because the pay is not enough,” Cynthia says. “We get along great. We have fun days together. We never get in arguments and I don’t want to lose her, but on the other hand why would she not want to quit? She’s underappreciated in the eyes of Medicaid and I feel terrible for her.”

In Cynthia’s world, direct care workers make life happen. And she strongly believes that this valuable job deserves more appreciation and recognition – increased pay, quarterly incentives, gas cards, and benefits are a few concrete ways she believes society could take those steps.

“[Direct care workers] are my arms and my legs. Without my nursing assistants I would just lay in bed and be a body.”

“I want whoever reads my story to know that I just never, ever, ever want to go back into a nursing home. I won’t have my job. I won’t have my animals. I won’t have my boyfriend. I won’t have my home. I won’t have my livelihood. It will be the death of me. I will do anything and everything I can to not go back in. It’s just not a place for young people to be or people with disabilities.”

“People with disabilities are people, too. We depend on others, but we are just like able bodied people. Sometimes I think that we’re not looked at like we’re worth anything. We’re not trying to drain society, drain money, or drain Medicaid by our care needs. People with disabilities, we can work. We pay taxes, but without the people that are getting us up and helping us become independent, we cannot be members contributing to society.”

#EveryoneDeservesCare shares real stories from disabled Ohioans that have been affected by the Direct Care Workforce Crisis in order to educate the population and those in power to make change on the dire nature of this issue. Direct Care Workers are people who provide home care services, such as certified nurses, home health aides, personal care aides, caregivers and companions. Factors contributing to a lack of care for disabled Ohioans range from low-pay, inadequate incentives to remain in a care field, and lack of sufficient funding for service systems. Due to the impact of the crisis, disabled Ohioans have gone without their basic needs and wants being met for years. Many have either been forced into nursing facilities or other institutions or have endured a lower quality of life and risks to their health and safety.

If you would like to share your story for this series, please visit our webpage at https://bit.ly/3HFz6rz or reach out to our Community Engagement Coordinator, Alexia Kemerling at akemerling@disabilityrightsohio.org.

All stories and information published in this series have been shared with explicit consent.

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