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Citing growing costs, Idaho seeks to end parental disability care worker program

Idaho State Capitol building
Photo by Otto Kitsinger
Idaho State Capitol building

The Idaho Department of Health and Welfare is seeking federal approval to end a pandemic-era program that let Medicaid pay family members to care for people with disabilities.

Idaho’s largest state government agency that runs Medicaid, the Idaho Department of Health and Welfare, says the costs and enrollment levels for the Family and Personal Care Services program have risen sharply, alleging that abuse of the program contributed to rising costs.

“It is our hope that program advocates and participants can work with the Legislature to determine which safeguards are appropriate to resolve the troubling issues we are seeing on the ground, recognizing the need for additional staff capacity if labor-intensive safeguards are selected,” agency director Alex Adams wrote in a letter to lawmakers on Nov. 4, which he shared with journalists Thursday.

Adams told reporters Thursday that in the letter, he sought to flag program issues and give the Legislature lead time to “determine what parameters are most appropriate.”

What’s next for the program?

If the federal Centers for Medicare and Medicaid Services (CMS) approves, Idaho’s program could end Jan. 31, 2025. That’s ahead of when Idaho’s federal approval for the program was set to expire in March.

The program — approved during the COVID-19 pandemic as a way to prevent COVID spread and address a direct care workforce shortage — let state Medicaid programs pay “legally responsible individuals,” such as parents and spouses, to care for people with disabilities.

Idaho has a shortage of direct care workers, a 2023 Idaho watchdog agency report found.

The Idaho Legislature could determine the future of the program. Idaho’s part-time state Legislature will reconvene Jan. 6 for the 2025 legislative session.

“Early termination will allow the Department to pause enrolling new applicants, and therefore ensure the Legislature has maximum flexibility to determine the appropriate path forward and proper legislative authorization,” Adams wrote in the letter to lawmakers.

The program’s termination wouldn’t signal a broader end to personal care services, which are typically provided by direct care workers, Health and Welfare officials said.

Now, Health and Welfare is now putting in place additional safeguards for the program’s remaining future that include four-times-a-year oversight forms for provider agencies; internal reviews of assessments by family members who serve as paid caregivers; and extending the timeframe to process new requests from two weeks to one month.

Health and Welfare officials couldn’t immediately provide an estimate on how much of the fraud the agency identified was confirmed or suspected.

Program enrollment, costs grew amid abuse, Idaho Health and and Welfare says

Dating back to 2015, figures provided by the Idaho Department of Health and Welfare indicate that around 500 or fewer children were enrolled in personal care services.

In 2021, children’s enrollment in the program grew to 546.

By Oct. 29, 2024, 1,178 children were enrolled — which the department anticipates would grow to 1,413 by the end of the year. Health and Welfare says that represents a 75% enrollment increase since 2023, when the federal public health emergency for the COVID pandemic ended.

Since 2022, program costs have nearly quadrupled “and are not sustainable within the current appropriation if the program growth continues,” Adams wrote to lawmakers. Idaho has spent nearly $8 million so far in 2024, about 90% over the $4.2 million budgeted in fiscal year 2025.

The program’s rising costs have been one of several things that has pushed the agency over budget, Adams told reporters.

“While expenditures are based on authorized hours of services that are approved by clinical staff, we are aware of many inappropriate attempts to increase the number of authorized hours by families,” Adams wrote to lawmakers. “… As stewards of taxpayer dollars and in our role in overseeing this entitlement program serving vulnerable children and adults, we cannot continue to operate a program with such high rates of suspected and known fraud, waste and abuse and potential health and safety issues for participants.”

Abuse in the program has, in part, driven growing enrollment, Adams wrote to lawmakers, detailing suspected and confirmed abuse types.

“We have observed that some parents, spouses, and provider agencies are trading tips on how to seemingly exploit this program,” he wrote.

Adams wrote abuse cases that Health and Welfare identified included:

  • Sharing ways to manipulate the state’s medical assessment “to maximize authorized hours of service” that Medicaid pays;
  • Sharing starting pay rates for provider agencies that led some program participants to switch agencies “exclusively to maximize the household’s income;” 
  • Performing other activities, like driving for a ride share company, while participants claimed to care for kids; and
  • Billing twice or three times for multiple kids at the same time, even when the program only lets providers care for one person at a time.

But if a family or household is “perpetuating fraud,” Adams wrote, “any recovery of funds would be from the (direct care) agency that technically employs the parent/spouse, thereby weakening Idaho’s already tenuous network of direct care agencies.”

Health and Welfare to work with families, providers on needs

Health and Welfare acknowledges that many families use the program right and actually need it since they can’t find direct care workers, Adams wrote.

The agency will work with families and provider agencies on resources and options, including for people who live in rural communities and can’t find direct care staffers to work the hours they need, Idaho Medicaid Deputy Director Juliet Charron told reporters.

“The volume of confirmed and suspected cases of fraud and abuse (is) very concerning,” Charron told reporters Thursday.

But, she said, “This is not at all us saying that all families are using the benefit inappropriately. And we want to support families who are in need.”

Adams also wrote the agency has worked to boost Idaho’s direct care workforce, saying the agency has seen the workforce grow 10% in the past two years.

“We feel confident that we’re going to be able to work with families to get the hours that they need, to get the coverage that they need. And it will be us — our staff — and provider agencies working to make sure that families do have the staffing,” Charron told reporters.

How was the program created?

The federal CMS agency temporarily allowed family members to be reimbursed as caregivers during the pandemic, Adams wrote to lawmakers. Before then, “legally responsible individuals” weren’t allowed to be paid personal care aids, which was against federal law and Idaho administrative rule, according to Adams’ letter.

But if Idaho sought to renew Health and Welfare’s waiver allowing family members to serve as paid caregivers, the Idaho Legislature would need to act, Adams wrote. He wrote that’s because of a new Idaho law that required legislative approval for Medicaid waivers.

“While the law attempted to grandfather in already-implemented waivers, the (program’s) rapidly escalating cost … complicates the read of the statutory authority,” Adams wrote, saying it appears that the program’s renewal “will require prior authorization from the Legislature.”

But given the suspected program’s abuse that Health and Welfare identified, Adams wrote that “the legislature should consider any additional statutory provisions outlining the safeguards the legislature envisions to protect scarce taxpayer dollars and ensure services are directed to those truly in need.”

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This story was originally published by Idaho Capital Sun.