Illinois struggles to help get kids with complex medical needs in-home nursing care
CHICAGO (CBS) – Nicholas Rizo spent months in a hospital crib waiting for a home care nurse to take his case so he could make memories with his brothers at their house in west suburban Montgomery.
"We were able to bring him home in October," said Kathleen Flynn, the clinical director at Aveanna Healthcare, a nursing agency that looked for someone to help the Rizo family.
Flynn said they were "so excited" when the Rizos found some help on their own by circulating flyers.
"A family can post all of the little, intricate details about their child on Facebook that a company cannot do," Flynn said.
Nicholas' family also shared a website with CBS 2. They didn't have full nursing coverage as of the airing of this story, so the hunt continued.
Sarah Weston's mother, Amy, has also been constantly recruiting.
Her pitch: "Want to come work for a really cute little 7-year-old? Because we've got lots of openings."
Illinois' Department of Healthcare and Family Services said it would pay for Sarah to receive in-home shift nursing. She's allotted 16 hours a day of care by a registered nurse, her mom said.
But it's her mom who winds up covering most of those hours without pay.
For a family like the Westons, whose home is filled with several boxes and bins of all the medical supplies Sarah uses, being shorted on in-home help is nothing new.
"We had families reaching out to us who were saying, 'I just don't have my nursing shifts filled,'" said Carrie Chapman, an attorney with Legal Council for Health Justice.
Chapman helped exhausted parents file a class action lawsuit against the Illinois Department of Healthcare and Family Services in 2015.
"Under the federal Medicaid Act, the state needs to ensure that these kids get care and to ensure that the kids are not at risk of institutionalization, and we allege that the state was failing to meet its obligation," Chapman said.
The lawsuit ended with a 2019 agreement in which the state did not admit fault but pledged to revise "processes for providing in-home nursing services."
The agreement also required progress reports. CBS 2 obtained them through an open records request and found that between April 2020 and April 2023, home care families' satisfaction rate with staffing steadily dropped.
What increased was the percentage of cases marked "no nurse applicants."
It's a trend the state appeared to be aware of, telling CBS 2 it's committed to helping kids like Sarah Weston.
One of the state's solutions to the staffing shortage was rate increases for in-home nurses. A $9-an-hour bump went into effect on Jan. 1 of this year.
"It has been kind of a common theme with us families that it's disappointing," said Amy Weston.
It's disappointing because the rate increase that brought registered nurses to $54 an hour doesn't all wind up in the caregiver's pockets. Part of the pay flows back to nursing agencies that staff cases.
"When you do get a rate increase, it covers everything," Flynn said. "It covers the training that goes into it. It covers the recruiting. It covers the supervisors."
CBS 2 reached out to more than 60 Illinois nursing agencies that provide care for medically complex children to ask what they're offering new hires with the new rate in effect. Only a few responded and said $40 an hour, not $54, is the best they can do. A $14 gap helps the agencies break even.
"I understand they have overhead costs," Amy Weston said. "I understand that they have to be able to keep their business afloat."
Still, the Westons, Rizos, and hundreds of other families are asking that the state begin to restrict the amount of money that nursing agencies can take so more goes home with the home care providers.
For now, the data show why parents are exhausted from filling in as nurses, not unlike the sentiment that spurred a lawsuit almost 10 years ago.
CBS 2 never heard back on a request for a sit-down interview with the new director of the Illinois Department of Healthcare and Family Services, but a spokesperson detailed some improvements in the works.
"The Department is deeply committed to serving the Medicaid population. And while labor market challenges during the pandemic have created strain across the health care system, the Department is continuing to identify solutions to address ongoing capacity issues, including implementing recent rate increases, among other improvements," a department spokesperson wrote in an email.
Some of those improvements include the NurseNet Portal, which "will allow nursing agencies to post nurse availability for families and care coordinators to see, as well as allow families to post shifts they need filled." CBS 2 was told it is not operational just yet.
The state also pointed to its involvement in a quarterly Family Advisory Council to hear feedback directly from families served by the program.
As for the parents' suggestion of limiting the amount of money nursing agencies can take from reimbursement rates, the HFS spokesperson said, "Part of the proposed federal Centers for Medicare and Medicaid Services (CMS) Access Rule requires states to adopt a mandatory 80% pass-through to workers. The Illinois Department of Healthcare and Family Services (HFS) is closely following the rule and is supportive of any requirement that passes funds on to direct service workers."
The state said it supports a federal proposal to implement a minimum hourly rate for caregivers.
To learn more about the daily struggles faced by families like the Rizos and Westons, check out the first part of this story.
