States Chart Path Forward On Paying Parents As Caregivers

Amy Wiedeman prepares her son Luke Schiller, who has cerebral palsy and other conditions that require 24-hour care, for bedtime at her home in Centennial, Colorado. Wiedeman said she has never been able to hire all the help Luke qualifies for. so she and her ex-husband work “night shifts” to make sure Luke doesn’t choke or have seizures. (RJ Sangosti/The Denver Post/TNS)

WASHINGTON – For Paige Hall, a single mother living in Eugene, Oregon, receiving a Medicaid payment to care for her son James during the pandemic was life-changing.

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

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

Announcement – Continue reading below

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

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

During the declared emergency, the federal and state governments were allowed to temporarily suspend laws that prevented Medicaid payments to “legally responsible individuals,” that is, parents of minor children and spouses who provide personal care services such as bathing, dressing and feed their family members with disabilities.

The change has left thousands of families across the country facing questions and uncertainty as states debate how to move forward, and families wait for permanent programs that pay them to care for their children and spouses, especially as the shortage of direct care workers continues. .

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

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


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

Of those states, 20 told KFF they plan to make those policies permanent in some way, though families are concerned about what the new programs will look like, with possible caps on hours paid and caps on eligibility. 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 are seeing a constant shortage. Families can really help supplement that workforce,” said Lindsey Browning, program director for the National Association of Medicaid Directors.

“States are also grappling with (and this is true of almost all Medicaid policy decisions) how to ensure the integrity of the program and protect against any potential fraud,” he said.

The shortage of direct care workers, a perennial problem due to low wages and poor benefits, worsened during the pandemic. Interest in keeping people in their homes, rather than in institutions, has increased the demand for their services.

Personal care attendants, especially those who work with children, are particularly hard to find, making pandemic-era programs that pay parents for such care especially helpful, said Nathan Hill, a father of one. 14-year-old boy named Brady, who requires 24-hour care due to complications from a rare form of brain cancer.

“I’ve been taking care of him for 13 years and it’s always been hard to find caregivers,” said Hill, of Meridian, Idaho.

Getting paid to care for your child also means no more “revolving doors of caregivers who bring their own baggage,” such as drug use and lack of privacy, she added, and less reliance on food stamps. and other public services. assistance programs.

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

Several states, including Delaware, Louisiana and New Mexico, have already filed plans with CMS requesting permanent changes that would allow parents of minor children or their spouses to receive Medicaid payments.

Others, like Ohio, Arizona and Virginia, have released drafts and are soliciting public input, while states like Idaho, Iowa and Kansas have promised permanent policies but haven’t released details or a timeline.

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

Hill said it would be easier for everyone if Congress simply passed a law allowing parents and other legally responsible caregivers to receive Medicaid payments instead of the federal government passing state-by-state exceptions. He and a coalition of hundreds of parents from across the country have met with members of Congress, CMS officials and the White House.

But so far, members have raised concerns about the possible high cost estimate from the Congressional Budget Office, which estimates how much the legislation would cost the government. Members and advocates have long complained that the CBO fails to take into account the savings that policies could generate elsewhere.

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

While the Oregon Legislature seeks to permanently allow payment to parents of children with “very high” medical or behavioral needs, it is not yet clear when the policy will go into effect or who will be eligible to receive it.

A bill passed by 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 may develop “criteria to limit the number of children eligible to participate in the program.”

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


In Ohio, the state is considering a proposal that allows parents of minor children with disabilities to be paid for up to 40 hours of care per week. A spokesman for the Ohio Department of Medicaid said the state intends for the new program to start on January 1.

For Lindsey Sodano of Mason, Ohio, 40 hours a week is far less than 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 an unrelated person to do the rest,” Sodano said. “But those people are just not here. They do not exist”.

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

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

Ohio is also considering limiting parental and spousal payments to circumstances where alternatives are not available. Sodano said this is worrisome, because some workers might not be a good fit.

“We’ll have to figure it out,” he said. “We will go back to interview person after person who rejects us or cheats on us half the time.

“I guess that’s the next step.”

© 2023 CQ-Roll Call, Inc.
Distributed by Tribune Content Agency, LLC

Read more stories like this. Sign up for Disability Scoop’s free email newsletter to get the latest news on developmental disabilities delivered directly to your inbox.

We will be happy to hear your thoughts

Leave a reply

Compare items
  • Total (0)