Disability worker shortage putting pressure on family caregivers


CHAMPAIGN, Ill. (WCCU) — The Illinois Association of Rehabilitation Facilities (IARF) is calling on Governor J.B. Pritzker’s office to raise the pay of disability workers.

The agency said people have left the industry for less stressful jobs, and it’s causing families to depend on each other to provide care.

That’s the case for Michael Johnson, a Champaign pastor, who was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2021.

The condition has left Michael unable to walk and do the smallest things on his own.

It’s a reality that breaks his heart.

"I had a thought in my head, ‘I’m going to get up and walk to the restroom. I’m going to go outside and get me a big breath of fresh air and come back in,’" Johnson said. "I think about that, because I can’t do that now."

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His wife, Lisa Johnson, is his full-time caregiver.

While she’s honored to support her husband from sunup to sundown, it gets tiring.

"My body tells me, ‘you don’t need to get up. You need to rest,’" Lisa said. "But I have to get up, because I need to take care of him [and] do the things that he needs me to."

An extra set of hands would give her piece of mind.

But IARF President and CEO Josh Evans explained how it’s hard to get families assistance because the pandemic caused many disability workers to leave the field for higher paying jobs, and the state is not funding support agencies.

"So unless they increase their rates, we don’t have the ability to increase the pay on our end," Evans said.

That’s why IARF is asking the governor’s office to raise the state’s budget for disability from a $1.50 per hour increase above minimum wage to $4 per hour.

That would take the state’s budget from $26.5 Million to $44.25 Million.

Even with a pay increase, Evans said there still will be a delay for people like Michael and the 14,933 other people on the state’s waitlist—with some people already waiting for the last few years.

Even when their number is called, they still have a while to wait.

"It could take several weeks or months, " Evans said. "It’s largely determined on what the individual wants and whether or not a provider has the staff to serve people."

In the meantime, Michael sees how Lisa being his caregiver weighs on her sometimes.

"Both of us being down isn’t going to work," Michael said. "We need help. We really need help."

Evans mentioned another hurdle people face is finding someone who specializes in certain conditions like ALS once their number is called off the waiting list.

Meaning if the Johnsons get to the top of the list, there may still not be a caregiver with the training needed for his condition available.

FOX Illinois contacted Governor Pritzker’s Office and it responded with a statement:

The Pritzker administration along with the majority in the General Assembly has implemented a series of investments to adequately fund facilities that provide services for developmentally disabled individuals. These investments will be phased in over a five year period, which began in FY22 with $108.9 million. Since then, the State followed up with $179.6 million in FY23 and a proposed investment in FY24 of $161.3 million. If the Governor’s proposed budget passes the General Assembly this spring with these investments intact, that would mean a $449.8 million investment in the Division of Developmental Disabilities. Individuals with mental illness, intellectual, and developmental disabilities deserve to be treated with dignity and ought to receive the highest quality of care. Under Governor Pritzker, IDHS is standardizing and improving conditions across the care system – while prioritizing community-based solutions to ensure protection for the most vulnerable Illinoisans.

via WRSP https://foxillinois.com

May 11, 2023 at 08:49AM

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