Due to the labor shortage, families with children with disabilities have to take care of the care they need – Advice Eating


VILLA GROVE, Illinois — Paper calendars line a wall inside a home in Villa Grovea small town south of Champaign-Urbana.

The calendars help Meagan Quigley keep track of who’s babysitting her son each day. Her son Morgan has both autism and epilepsy – meaning he’s in need of care almost constantly.

Almost every day is marked with the name of at least one caretaker. Alyssa Mariasy, the started caring for Morgan two months ago, will be performed on several days this week.

At the moment she is one of only two caretakers.

“We’re just trying to make sure he always has someone, but he doesn’t always have someone,” Mariasy said.

Morgan’s mother, Meagan, works multiple jobs, including massage therapy and bookkeeping, averaging about 60 hours a week. She turned to home care after he was kicked out of several daycares as a baby.

Childcare experts said the pandemic has made it difficult for families across the country to find childcare. But for the families of children with disabilities, they said, it’s even harder.

Calendars line the wall of the dining room in Meagan and Morgan’s home in Villa Grove. Each tag is filled with at least one name representing one of Morgan’s caretakers.

Meagan needs workers who can deal with Morgan’s outbursts and protect him when he has a seizure, she said. And if she doesn’t have someone to watch Morgan, she can’t work.

This is the situation she faced when the 2020 pandemic hit.

“I didn’t even know how to pay my bills because I didn’t have any workers at all,” Meagan said. “It’s a terribly stressful situation because as a single mom I have to show up for work because I’m the only breadwinner.”

The pandemic created a nationwide labor shortage, forcing many workers to stay at home or find more secure and less face-to-face jobs. Aaround 10% of childcare workers or 100,000 people, left the industry during the pandemic, according to the University of California at Berkeley.

According to this, there will be almost 4.5 million vacancies in home nursing nationwide in the next ten years Data from the Paraprofessional Healthcare Institute. There will be almost 15,000 job openings for home nursing jobs in Illinois over the next three years. according to the Projection Managing Partnership.

Childcare is Meagan’s biggest expense. It’s more than the cost of her rent, groceries and utilities combined, she said.

She struggles to find workers who stay and work late. TThe constant change of employees doesn’t just bother her, she says. It’s tough for Morgan too.

“Any lack of consistency in his routine leads to more breakdowns and more challenges in regulating his emotions [and] more challenges when he even attends school,” Meagan said.

Underrated and underpaid

IIt’s no secret that care work has never been valued in the United States, said Julie Kashen, senior fellow at The Century Foundation.

Kashen, who studies childcare policy, said the industry has been in crisis for decades. This crisis is rooted in racial injustices, Kashen said.

“During the days of slavery, black women who were enslaved were tasked with caring for children, to the detriment of their own children,” Kashen said. “So it was something that was not only free, but forced labor to do that work.”

A sign at the entrance to the Quigley home alerts visitors that a resident of the home has autism and may not respond to verbal commands. Morgan Quigley, 16, has both autism and epilepsy and requires almost constant care from his mother or a staff carer.

Since then, work in this industry has been underpaid and undervalued.

That’s why it’s no secret to Kashen that nurses today are still underpaid and undervalued.

“People who enjoy working with children [and] who are very good at working with children are moving to Starbucks, where they could make more money and enjoy health benefits,” Kashen said.

The Build Back Better Act — a sweeping infrastructure law introduced by President Biden in 2021 — aimed to reduce childcare costs for families.

biden promised in a speech last fall that no family would spend more than 7% of their income on childcare. According to the bill, many families pay up to 35%.

However, the deed was stalled in the past year after that The US Senate, controlled by Democrats, failed to pass the law.

Often, Kashen said, families pay workers as much as they can. But they still don’t get paid enough to stay in the industry.

“The sad truth is that the people who work in childcare, the early educators, even if the parents pay as much as they can, aren’t paid well,” Kashen said. “So there’s this disconnect because it takes a really lot of money to do this well.”

A deficiency across the board

For parents struggling to find childcare, Brenda Eastham, director of University of Illinois Childcare Resource Services, is there to help. CCRS refers parents to local child care services and provides training for child care providers statewide.

There is a nursing shortage in all central Illinois counties, Eastham said, including Champaign, Douglas, Iroquois, Macon, Piatt and Vermilion.

Her peers across Illinois are struggling to find parents the labor force they need, she said.

“We’re all feeling the bottlenecks, whether it’s Cook County or the southernmost counties,” Eastham said. “It’s a staff shortage across the board.”

The biggest problem is low wages, Eastham said.

“If you can go to McDonald’s and make more than you make as a childcare worker, that’s a no-brainer for me because of the work that involves childcare,” Eastham said.

It is even more difficult for the families of children with disabilities. There is more skill and training that goes into the care of children with disabilities, Eastham said, which may deter many providers.

“Getting a provider to step up to that challenge and provide truly quality care can be a struggle for parents,” Eastham said.

24 hours a day, seven days a week

Back at Villa Grove, Meagan Quigley has to keep hiring because Morgan’s caretakers quit too often or, worse, just don’t show up.

Morgan Quigley, 16, poses with his newly won Special Olympics medals at his Grove mansion. Quigley has both autism and epilepsy and requires almost constant care.

Now she’s saving to be able to pay more when school goes into summer vacation. After all, Morgan needs six more hours of care every day – the hours he used to spend at school.

“For a child with special needs, it’s 24 hours a day, seven days a week,” Meagan said. “Some parents are at least allowed to take a nap. We are not.”

But Morgan is her number one priority and she said she will always make sure he is in good hands. She said she takes it one day at a time.

“You can’t count on kids like mine for the long term,” Meagan said. “You just say, ‘Okay, today we have to do this. today. Great. We got through it today. What are we doing tomorrow?’

“Because if you walk by tomorrow, everything will fall apart.”

Farrah Anderson is a journalist and executive producer at the Illinois Student Newsroom. Follow her on Twitter @farrahsoa.

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