#EveryoneDeservesCare: JW's Story

July 27, 2022 / #EveryoneDeservesCare

JW describes herself as a normal 35-year-old. She lives with her beloved rescue cat, Callie, and hopes to own her own home someday. “I’m very much like every other adult. I just need a bit of help.” JW is a wheelchair user and has a trach. She qualifies for 12 hours of nursing care and 5 hours of home health aide services every day through the Ohio waiver program. However, JW hasn’t consistently received all the care she qualifies for since 2010.

Her home health aide typically provides between 1 and 3 hours each evening. JW relies on this aide to help her go to the bathroom, eat dinner, and get to bed. While the home health aide provides many critical services for JW, they also play an important role in keeping her company.

JW’s home health agency frequently rotates aides to different homes, which prevents her from building trusting relationships with her aides. A few years ago, JW had an aide steal a significant amount of money from her home, further stressing her ability to build relationships with her aides.

One of the highlights of JW’s care is her nurse. She has been working with JW for 30 years — since she was only 5 years old. But JW cannot rely on her forever, as she will be retiring next May. JW relies heavily on her nurses, especially to maintain her trach. She is afraid of what will happen if she cannot replace her. “If I don’t find more help, I’m going to have to go to a nursing home at the age of 36. I don’t want to do that, mainly because of my health.”

JW fears the widespread diseases that claw their way through the vulnerable inhabitants of nursing homes. She also fears having to give up her cat, who likely cannot go with her to a nursing home. As a counselor, JW has worked with clients in nursing homes. She reflected upon a time she was visiting with a client who had pushed the call button for assistance to use the bathroom. An excessive amount of time passed, and the woman ended up soiling herself while waiting for staff assistance. Moving into a nursing home at the age of 36 would be extremely detrimental to JW’s wellbeing. She is considering moving into the home of a friend, “but then she would be the one ‘stuck’ taking care of me.”

JW knows that change in the direct care workforce will not come over night, but she recognizes some simple solutions to help recruit and retain quality home health aides. It starts by breaking down some of the stigmas about the job. People often show up to care for JW and are shocked that she is not an elderly woman.

“I wish people know that young people need help too sometimes.” She also explained that a lack of knowledge about what the job entails can prevent people from entering the workforce. For example, many people falsely believe that if they are an aide for a client in a wheelchair, that they will be required to pick them up frequently. However, many clients have power lifts. JW recognizes that the misconceptions go both ways. “I wish people would appreciate home health workers more… because this is a tough job.” The most vital need is an increase in pay. One of her aides, whom she really likes, is considering quitting because he isn’t paid enough to support his two children. “I have to constantly worry about that.”

In order to recruit and retain more quality home health aides, JW believes there must be a change in systemic policies. “They (home health aides) need benefits… vacations, sick days, and mental health support.” These types of changes need to come from the top down. “My number one wish is that lawmakers… would know what it’s like. When I was a kid, my parents always told me that people who are in charge of this aren’t affected by disability, so they don’t know what it’s like to have to worry about that stuff. I wish they knew what it was like.” Finally, JW hopes to see support expanded for the families of people with disabilities. “My parents constantly worry about me and what’s going to happen when they die. I would love to see more resources for parents, guardians, and other family members.”

Without intentional change, JW and others like her will continue to lose their freedom, including their ability to live independent and productive lives. JW wants to live like every other adult. “I enjoy doing what every other 35-year-old does. I just need a bit of help.”

#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.

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