#EveryoneDeservesCare: LC's story

July 13, 2022 / #EveryoneDeservesCare

When LC’s daughter was born, doctors told LC that they did not believe her daughter would live.

That was 26 years ago. Now LC describes her daughter as a happy young lady. LC and her family have found a way to live in their community, despite many societal barriers. However, that doesn’t mean the journey has been easy. LC has been fighting for adequate care for her daughter for as long as she can remember. Their family first received a waiver for direct care services when her daughter was 3 years old. When asked what life would be like for her family if they had all the help they needed, LC sighed. “We haven’t had it in so many years, I don’t know what that would look like.”

The lack of care has impacted every part of their family’s life. The daily necessities that most people count on are a struggle for LC and her daughter.

“A lot of people take for granted that they have a 26-year-old, they’re good to go, right? They can go to church. They can go to the store. They can maintain their employment. Those are luxuries for me.”

Earlier this year, LC was forced to quit her job in order to care for her daughter. She could not find enough care workers to maintain her employment hours, but it was not for lack of trying. LC has gone down every avenue to find providers, from the Social Security Administration to Facebook groups. She even took out an ad in the newspaper. Yet, her family only has 22 of the 168 hours in each week covered. Even during those hours, LC explained, her time still revolves around her daughter.

“Even if they’re at school, or go to a program, or whatever, it seems like you’re still working on things for them when they’re not here… still working on making sure her meds are picked up, her laundry is done, making appointments, paying her bills, any number of things that relate to her care… I don’t think people understand if they haven’t walked in our shoes.”

Even a small trip out of the house is a strenuous process for LC’s family. Swinging by the pharmacy requires her to pack up a suction machine, ventilator, diaper bag, and tube feeding equipment. LC must then pull her adult daughter in her wheelchair while also pushing a shopping cart. When deciding all the places they want to go, LC put it plainly. “Either she goes with us, or we don’t go. That could be something as simple as the grocery store or as big as a vacation.”

While LC has experienced the many difficulties of the direct care system, she tries to remain positive. “I wish people understood there’s a great reward in being… (a provider), to actually see the difference you’re making for the individual and their family. Your client isn’t just your client, your client is the whole family.” LC has seen many providers pushed out of the system by things like low wages, the complicated process to become a provider, or lack of training. If society values people with disabilities and their families, LC believes “We must incentivize people to do these jobs.”

#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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