#EveryoneDeservesCare: Luke and Heather

August 25, 2022 / #EveryoneDeservesCare

While many of our #EverybodyDeservesCare stories highlight the impact of the direct care workforce shortage on disabled adults, Medicaid-funded waivers that provide home and community based services have no age requirements. People of all ages benefit from these essential services.

For Luke, a 7-year-old boy with autism, direct care workers can help him work on social and behavioral skills, take him on outings in the community, and assist him with personal care needs like eating, bathing, dressing, and toileting.

Luke has two loving parents who are able to provide the majority of his care, but both his parents need to work to support their family, and because Luke needs 24/7 attention, additional support from direct care workers is crucial to his safety, well-being, growth, and happiness.

Heather, Luke’s mom, shares that the process of getting Luke the care he needs has been strenuous and is an ongoing fight.

Originally, Luke was only allocated 5 hours of care per week. While any support is helpful, finding an agency that was willing to send an aide out for such limited hours was impossible. The low pay, difficult process of getting a case set up, and the high-skill level of work required to provide his care, meant that a case that can only supply 5 hours a week simply wasn’t worth it to many provider agencies – especially with the added system pressure of the shortage of workers.

Even if Luke was able to get his 5 hours of care consistently covered, Heather feels it wouldn’t be enough. Heather’s relentless advocacy has increased Luke’s care to 10 hours per week, but she feels frustrated that the officials who are determining what Luke needs are not the people that know him best.

“The people that are making these decisions, they’re not living in our shoes every day,” she says. “Right now I’m doing the evening shift at work. Before I go to work, I drop Luke off at my husband’s office. So he’s spending 4 hours in an office while my husband’s trying to work. He is getting into the trashcan and having meltdowns, so it’s causing stress for both of them. Luke doesn’t need to be in an office. He needs to be going to the park like a little boy should.”

Heather shares that Luke loves to be outside.

“He’s just as happy playing with sticks and stones than any toy,” she says, laughing. “He also loves horses and playing in water. And he’s a master at puzzles, and he can work a tablet or phone like no other. It’s amazing.”

One common – and harmful – misconception Heather has faced is the idea that Homemaker/Personal Care (HPC) services are just “free babysitting” for parents.

“I’d like to see someone find me a babysitter that’s qualified to care for Luke,” Heather challenges.

Heather feels that the idea that direct care workers are just babysitters is insulting both to the families and people that need this care and to the skilled workers who provide it.

Having the support to get Luke out into the community is something Heather is particularly adamant about. For kids with autism, early exposure to new experiences and lots of practice is essential to helping them build strong foundations. While she and her husband do take him on outings, they both work full time, have other children to care for, household chores to manage, and so they just aren’t able to dedicate as much time to these experiences as Luke needs.

“Just like any other kid, Luke can feel when there is stress or tension at home,” Heather says, “if we had help [from direct care workers], it would lessen that stress and Luke would only benefit.”

Heather’s advocacy for Luke – from pushing for him to receive services, to searching for direct care workers, to ensuring he receives support in school – is hours and hours of work on top of her job as a nurse and as a mother to three kids.

“It’s like learning a foreign language,” Heather says of navigating the complex service systems. “It’s intimidating, but we love him to death and just want what’s best for him.”

#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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