BOISE, ID – A program that lets Idaho parents and spouses serve as paid caregivers is set to end in two months.

The federal Centers for Medicare and Medicaid Services, or CMS, last week approved the Idaho Department of Health and Welfare’s request to end Idaho’s program.

The program, called the Family and Personal Care Services program, allows spouses and parents to be paid caregivers for their family members with disabilities. Nearly 1,200 Idaho children were enrolled in the program in October, a number that has spiked in recent years.

The program was federally approved during the pandemic as a way to reduce COVID’s spread and address a shortage in the typical disability caregiver workforce. In November, Idaho health officials announced plans to seek to end the program, saying fraud and abuse contributed to higher program costs and enrollment levels, the Idaho Capital Sun previously reported. Last month, CMS temporarily extended Idaho’s program, which was set to expire in March.

Disability advocates and families who participate in the family caregiver program worry kids with disabilities couldn’t get the care services they need without the program, the Sun previously reported. Idaho has a shortage of direct care workers, the typical caregivers that work in relatively low-paid, demanding jobs, according to a watchdog report by the Idaho Office of Performance Evaluations.

CMS gave Idaho two months to end the program

In a letter on May 15, CMS approved Idaho’s request to end the family caregiver program within 60 days. After that, Idaho will no longer have the power to pay spouses and parents as disability caregivers.

But broader caregiver services that are usually provided by direct caregivers will remain in Idaho. And families in need of caregiver services have options, Idaho health officials say.

Idaho will keep the family caregiver program in place for the next two months, Idaho Medicaid Deputy Director Juliet Charron at the Department of Health and Welfare told the Sun in an interview Monday.

“We think that’s the right thing to do — to ensure that families have enough time to become aware and to work with their provider agencies,” Charron said.

The next 60 days, she said, will be focused on “communication, connecting families to provider agencies, helping them navigate that, and working through the transition.”

Idaho officials encourage families to reach out to direct care agencies they’ve worked with in the past to see if they have availability, she said.

“CMS determined Idaho’s amendment maintains beneficiary access to needed personal care services through other Medicaid authorities and aligns with the state’s goals of simplifying service delivery and strengthening its oversight of the state Medicaid program,” a CMS spokesperson told the Sun.

Idaho families have other options, health officials say, like using other family members as caregivers

Family members who aren’t spouses and parents of their loved ones in need of caregiver services can become trained to work as caregivers, Charron said. And spouses and parents who served as caregivers under the program ending can still work as caregivers for other families in need, she said.

“If they have another family member, a trusted neighbor, a trusted friend who may want to do this kind of support for the family, that they connect with their provider agency to get that individual signed up and through the trainings,” Charron said.

It just can’t be a “legally responsible individual” like a parent or spouse, she explained, but paid caregivers can be close friends or other family members, like a grandparent, or aunt or uncle.

Idaho health officials are also seeing a rise in the number of direct care workers who provide disability caregiver services, following reimbursement increases from the Legislature, Charron said.

But those options won’t work for families, said Nathan Hill, a disability advocate who is a paid caregiver for his son with disabilities.

Direct care agencies don’t have enough staff to fill in, he told the Sun in an interview Monday. And having parents or spouses care for other kids with disabilities can create fraud, he said.

“Nobody knows my child like me,” Hill said.

And outside caregivers are hard to come by, and often don’t stay long, he said.

Instead of looking to end the family caregiver program, he said Health and Welfare should’ve asked the Idaho Legislature for more funds to run it.

And he said he’s still skeptical of Health and Welfare’s claims of fraud and abuse within the family caregiver program, saying the agency hasn’t produced evidence of substantial amounts of fraud.

Charron, with Health and Welfare, said investigations are ongoing.

“I can’t comment on specifics of ongoing investigations and anything referred to the Attorney General’s Office. But what I can tell you is that investigations are continuing. And we do have identified instances of fraud, waste and abuse that we are addressing through appropriate channels,” she said.

Public comments on Idaho’s attempt to end family caregiver program reflected broader worries

Everyone who submitted public comments on Idaho’s request to end the family caregiver program opposed ending the program, CMS wrote in its letter approving Idaho’s request.

Most public commenters said allowing parents and spouses to become paid caregivers “improved the quality of care for beneficiaries,” CMS wrote.

Nearly a third of public commenters wanted Idaho to continue the family caregiver program “because the income provides financial stability for families,” CMS wrote. “Parents of individuals requiring (caregiver services) described challenges maintaining other types of employment due to inconsistent coverage from traditional (caregivers).”

A quarter of public commenters worried about poor outcomes and possibly losing progress if they were forced to switch from family caregivers to traditional caregivers, CMS wrote.

Idaho Capital Sun is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Idaho Capital Sun maintains editorial independence. Contact Editor Christina Lords for questions: info@idahocapitalsun.com.