November is National Family Caregivers Month in the US. According to a new report from AARP, family members caring for loved ones provide an estimated $600 billion in unpaid services each year. They often sacrifice their time, money, and, in many cases, their well-being.
Unfortunately, The Idaho Department of Health and Welfare is requesting federal permission to end a pandemic-era program in which Medicaid paid people to care for disabled family members. The Idaho Department of Health and Welfare, Idaho’s main state government agency in charge of Medicaid, claims that the expenses and enrollment levels for the Family and Personal Care Services program have skyrocketed, blaming program abuse for the increase.
“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.
During the COVID-19 public health emergency, the program let state Medicaid programs to pay “legally responsible individuals,” such as parents and spouses, to care for disabled family members.
Idaho faces a direct care worker shortage according to a 2023 Idaho watchdog agency assessment. The Idaho Legislature could decide the program’s future. Idaho’s part-time state Legislature will resume on January 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 end would not mean the end of personal care services, which are normally provided by direct care workers, Health and Welfare officials said.
Health and Welfare is now implementing additional safeguards for the program’s future, including 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 for processing new requests from two weeks to one month. Health and Welfare officials could not immediately say how much of the fraud discovered was proven or suspected.
In 2021, 546 children were enrolled in the program. By Oct. 29, 2024, 1,178 children had enrolled, which the agency expects to increase to 1,413 by the end of the year. According to Health and Welfare, this is a 75% enrollment increase since 2023, when the federal public health emergency for the COVID-19 pandemic ended.
Since 2022, program costs have roughly doubled “and are not sustainable within the current appropriation if program growth continues,” Adams wrote to legislators. Idaho has spent about $8 million in 2024, which is approximately 90% more than the $4.2 million projected for fiscal year 2025. The program’s increased expenses are just one of numerous factors that have driven the agency over budget, Adams told reporters.
Abuse in the program has contributed to increased participation, Adams wrote to lawmakers, listing suspected and verified abuse types. “We have observed that some parents, spouses, and provider agencies are trading tips on how to seemingly exploit this program,” Adams wrote.
Adams wrote about abuse cases that Health and Welfare identified. They 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; and billing for multiple people at one time.
Health and Welfare recognizes that many families use the program correctly and genuinely require it since they cannot locate direct care workers. Idaho Medicaid Deputy Director Juliet Charron told reporters that the agency will collaborate with families and provider agencies to develop resources and options, including for persons living in rural towns who are unable to find direct care workers to work the hours needed.
Despite the allegations of fraud, for many families, being a paid caregiver is a blessing. When the Public Health Emergency ended last year, many family members were no longer allowed to receive pay for the care they provide. 39 states reported reacting to labor shortages by paying family caregivers during the public health emergency. As of April 2023, only 20 states planed to continue this practice once the public health emergency expired.
Idaho isn’t the only state facing an end or restructuring of paid family caregiver programs. In Indiana, as of July 1, 2024 families had to transition to the structured family caregiving model. Structured Family Caregiving pays caregivers per day based on a three-tiered system that evaluates the Medicaid member. Level one has a daily charge of around $77, level two is over $100, and level three is around $133.
Previously, the attendant care program paid providers approximately $34 per hour, regardless of their estimated need. The providers would then pay a share of that amount to legally responsible individuals.
Erica Hunt, a mother and family caregiver to a medically fragile child, said that being able to provide attendant care as a family caregiver gave her and her family a break after years of navigating complex care without assistance. Her daughter Ella is ventilator dependent and cannot swallow or move. The family has trouble finding nurses who can meet her needs.
In Virginia, people can be paid to provide care to their loved ones. But, they can only be paid for 40 hours of care per week. They must also comply with the use of electronic visit verification or EVV.
If you’re unfamiliar with EVV, it entails using an electronic system to track the hours worked by personal care attendants and other home service providers for the elderly and disabled. This might be a custom device, a smartphone app, or a web-based input form that can be accessed from a computer. When employees log hours, their employers must verify them using EVV.
Kelly Kiser, is a paid caregiver for her disabled daughter. She voiced concern about the limits on the proposal’s public comment forum. She noted that her daughter was approved for 50 hours of caregiver services per week as of last summer.
At the time, Kiser said there was nobody who could care for her daughter for 50 hours a week. She left her job and spent her savings while caring for her daughter.
Paid family caregiver programs are not only economical, but they are also safe. It can be difficult to find a caregiver who works well with your loved one, whom you can trust. Family members know their loved one’s needs better than any stranger.
Even with support, caregivers frequently face negative consequences when caring for someone. Negative effects of caregiving might be physical, economic, psychological, or social. Isolation, greater obligations, job loss, despair, a reduction in physical health, financial pressure, feelings of burden, and stress are some of the potential repercussions.
Millions of vulnerable Americans depend on family members to provide care every day. Family caregivers need support in order to continue providing vital care to their loved ones.
Sources:
Burns, Alice, et al. “Ending the Public Health Emergency for Medicaid Home- and Community-Based Services.” Kaiser Family Foundation, Kaiser Family Foundation, 19 Apr. 2023, https://www.kff.org/policy-watch/ending-the-public-health-emergency-for-medicaid-home-and-community-based-services/.
Carey, Ted. “Caring for a Loved One? AARP Can Help with a Local Online Series This Fall.” AARP, AARP, 6 Nov. 2024, states.aarp.org/massachusetts/caregivingma.
Eubanks, Virginia, and Alexandra Mateescu. “’We Don’t Deserve This’: New App Places U.S Caregivers under Digital Surveillance.” The Guardian, 28 July 2021, http://www.theguardian.com/us-news/2021/jul/28/digital-surveillance-caregivers-artificial-intelligence
McIntyre, Meghan. “New Proposal Aims to Permanently Allow Caregiver Option for Va. Disability Program.” Virginia Mercury, 19 July 2023, http://www.virginiamercury.com/2023/07/19/new-proposal-aims-to-permanently-allow-caregiver-option-for-va-disability-program/.
Fuller, Joseph B., et al. “Hidden Workers: The Case for Caregivers.” Harvard Business School, Harvard University , 3 Oct. 2024, http://www.hbs.edu/managing-the-future-of-work/Pages/default.aspx.
Pfannenstiel, Kyle. “Citing Growing Costs, Idaho Seeks to End Parental Disability Care Worker Program .” Idaho Capital Sun, States Newsroom, 8 Nov. 2024, idahocapitalsun.com/2024/11/08/citing-growing-costs-idaho-seeks-to-end-parental-disability-care-worker-program/.
Ruhman, Abigail. “Families of Medically Complex Children ‘Lost Trust’ in FSSA during Attendant Care Transition.” Indiana Public Media, NPR , 1 July 2024, indianapublicmedia.org/news/families-of-medically-complex-children-lost-trust-in-fssa-during-attendant-care-transition.php.