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Families, states chart path forward on paid caregiving

End of the COVID-19 public health emergency has many states revisiting waivers that allowed payments to disabled Americans’ parents, relatives

Luke Schiller, of Centennial, Colo., needs around-the-clock care for cerebral palsy, among his other illnesses. Luke’s mother, Amy Wiedeman, says they’ve never been able to hire all the help for which Luke qualifies, so she and her ex-husband take night shifts making sure Luke doesn’t choke or have a seizure.
Luke Schiller, of Centennial, Colo., needs around-the-clock care for cerebral palsy, among his other illnesses. Luke’s mother, Amy Wiedeman, says they’ve never been able to hire all the help for which Luke qualifies, so she and her ex-husband take night shifts making sure Luke doesn’t choke or have a seizure. (RJ Sangosti/Denver Post via Getty Images)

For Paige Hall, a single mother living in Eugene, Ore., getting paid by Medicaid to care for her son James during the pandemic was life-changing. 

She no longer had to worry about finding a reliable, qualified caregiver who could care for James, a nonspeaking 11-year-old with autism and severe drug-resistant epilepsy.

Shortages of home care workers in Eugene had made it nearly impossible for Hall to find help, and the workers who said they were available either didn’t show up to work or were late to their shifts. But with Paige as James’ primary caregiver, his behavior, self-confidence and physical health improved, she said. 

“It was really amazing to see how well my son grew in those two years with myself as the caregiver,” Hall said. 

But Hall’s $24-an-hour payments ended May 11 with the expiration of the declared public health emergency due to COVID-19.

During the declared emergency, federal and state governments were permitted to temporarily waive laws preventing Medicaid payments to “legally responsible individuals” — namely, parents of minor children and spouses providing personal care services like bathing, dressing and feeding to their disabled relatives. 

The change has left thousands of families throughout the country navigating questions and uncertainty as states debate how to move forward, with families hoping for permanent programs that pay them to care for their children and spouses — especially as shortages of direct care workers continue. 

Hall has been unable to work because she has to care for her son full time and can’t find a suitable caregiver. Having a permanent program in Oregon “would mean stability — a more stable and positive environment for my son to grow in,” she said. 

“I myself wouldn’t have to stress and worry about whether or not he’s going to have good, consistent and reliable care,” she said. “I know that I can provide that.”

Oregon

Oregon was one of 39 states that expanded the circumstances in which legally responsible individuals could be paid for caregiving duties during the public health emergency, according to KFF, a health policy research organization.  

Of those states, 20 indicated to KFF that they plan to make those policies permanent in some capacity, though families worry about what the new programs will look like, with potential caps on paid hours and eligibility limits. In 2018, before the COVID-19 pandemic, only five states allowed parents or spouses to receive Medicaid payment for those services, according to KFF.  

“One of the big considerations for states is the fact that [in] the paid professional workforce, we’re seeing ongoing shortages. Families can help really supplement that workforce,” said Lindsey Browning, program director at National Association of Medicaid Directors.

“States are also grappling with — and this is true in almost any Medicaid policy decisions — how you ensure program integrity and protect against any potential fraud,” she said

Shortages of direct care workers, a perennial problem because of low pay and poor benefits, worsened during the pandemic. A focus toward keeping people in their homes, rather than institutions, has increased demand for their services. 

Personal care aides, especially ones that work with children, are particularly hard to find, making the pandemic-era programs that pay parents for that care especially useful, said Nathan Hill, the father of a 14-year-old named Brady, who needs around-the-clock care because of complications from a rare form of brain cancer. 

“I’ve been caring for him for 13 years, and it has always been a struggle to find caregivers,” Hill, of Meridian, Idaho, said. 

Being paid to care for his son also means there is no longer the “revolving door of caregivers that bring in their own baggage,” such as drug use and lack of privacy, he added, and less of a reliance on food stamps and other public assistance programs. 

States that want to continue paying caregivers through Medicaid must submit their proposals to the Centers for Medicare and Medicaid Services for approval by November to avoid gaps in payments to families, the agency told Medicaid directors in early August, although some states, like Oregon, have already ended their temporary programs. 

Several states, including Delaware, Louisiana and New Mexico, have already filed plans with CMS requesting permanent changes allowing parents of minors or spouses to receive payments from Medicaid.  

Others, such as Ohio, Arizona and Virginia, have released drafts and are soliciting input from the public, while states like Idaho, Iowa and Kansas have vowed to pursue permanent policies but have not released details or a timeline. 

In states such as Georgia and South Carolina, the programs will end. 

Hill said it would be easier for everyone if Congress just passed a law allowing parents and other legally responsible caregivers to be paid by Medicaid rather than the federal government approving exceptions on a state-by-state basis. He and a coalition of hundreds of parents from across the country have had meetings with members of Congress, officials at CMS and the White House. 

But so far, members have expressed concerns about the potential high cost estimate from the Congressional Budget Office, which estimates how much legislation would cost the government. Members and advocates have long complained that the CBO doesn’t take into account savings the policies could generate elsewhere. 

“They support the idea. They’re not against the idea. What they’re against is that, ‘OK, this, the cost is not going to work,’” Hill said.

While the Oregon Legislative Assembly is seeking to permanently allow payment to parents of children with “very high” behavioral or medical needs, it is not yet clear when the policy will take effect or who will be eligible for it. 

A bill that passed the legislature in July is not expected to fully fund the need in Oregon. About 440 children received paid care from parents or guardians under the pandemic program, and the bill only includes enough funding for “a couple hundred families” to participate, according to a legislative analysis. The legislation notes that the state Medicaid agency can develop “criteria to limit the number of children eligible to participate in the program.” 

Several states, including Ohio, Virginia and Arizona, want to make their programs permanent but with limitations on the number of hours for which parents and spouses can receive payment.

Ohio

In Ohio, the state is considering a proposal that allows parents of minor children with disabilities to receive payment for a maximum of 40 hours of care per week. A spokesperson for the Ohio Department of Medicaid said the state aims to have the new program begin Jan. 1.  

For Lindsey Sodano of Mason, Ohio, 40 hours per week is far below the number of hours of care her daughter Mimi, a 14-year-old with developmental disabilities, needs. 

“If you have a child like ours, who needs 95 hours [of care per week], and you can only get 40, you’re supposed to try to find a nonrelated person to do the rest,” Sodano said. “But those people just aren’t here. They don’t exist.”

Sodano and her husband, Justin, are currently receiving payment from Ohio Medicaid for 80 hours per week until the temporary provisions expire in November. 

She said she and other Ohio parents in similar situations aren’t counting on the state to continue the program after November, especially because of pushback from county boards that are partially responsible for funding care for people with developmental disabilities. 

Ohio is also considering limiting payments for parents and spouses to circumstances when no alternatives are available. Sodano said that is concerning, because some workers might not be a good fit. 

“We’ll have to figure it out,” she said. “We’ll go back to interviewing person after person after person who turns us down or ghosts us half the time. 

“I guess that’s the next step.”

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