by Kacey Poynter doesn’t have to travel far to check in at work. She is a paid caregiver and simply gets out of bed to tend to her 2-year-old son, who sleeps in a portable playpen right next to her.
Sonny was born with a congenital malformation that affected his brain development and requires almost continuous care simply to breathe and eat. Poynter left his call center job when he brought him home from the hospital and has cared for him since then instead of relying on assistants or institutions. The Indiana Medicaid program has paid him for this labor of love.
“Honestly, being able to be here with him and not worry about someone else trying to take care of him has changed my life,” she said.
But her ability to continue caring for him is now in doubt. Indiana’s social services agency has announced plans to end the caregiver program, citing a nearly $1 billion shortfall in the state’s Medicaid budget. By July 1, parents and guardians caring for their children and spouses caring for their partners would have to enroll in a different program for a much lower wage.
The fear, for people like Ms. Poynter, is that they will have no choice but to return to work and seek help for home care amid a growing national shortage of aides and nurses.
During the coronavirus pandemic, states received a huge infusion of federal money — money that is now running out, leaving Indiana and many other states facing difficult decisions about how to plug gaping holes in their budgets.
Panicked Indiana parents who rely on the payments have held weekly demonstrations at the Capitol, some bringing their children. With the state legislative session ending Friday, it’s unclear how the proposed cuts will play out.
Lawmakers point to difficult budget calculations and the blurred line between premium care that deserves payment and the duties all parents owe their children.
“We have a lot of legislators saying, ‘No one should rely on Medicaid to make a living,'” said Kim Dodson, executive director of The Arc of Indiana, a nonprofit advocacy group. “But there are families who have chosen not to work outside the home to care for their loved ones, because there is no one else who can do it and certainly can’t do it as well as them.”
Indiana Lt. Gov. Suzanne Crouch, a Republican running for governor, has call urged the social services agency to postpone cuts and demanded an outside audit of the agency’s finances. “We will be judged by how we care for the most vulnerable among us,” she said in a statement.
About four million Americans with chronic illnesses or disabilities receive home and community-based services paid for by Medicaid, the government’s health insurance program for low-income people. Most are adults, but a growing proportion are children with serious medical conditions who may need specialized services and help with tasks of daily living such as bathing and dressing.
These services, which keep many people out of nursing homes or other institutions, may be provided by nurses or home health aides, but families have always been the backup. In many states, family members can be paid to provide some of that care, but Medicaid programs have generally been more restrictive about paying parents who are thought to be obligated to care for their children by duty and not for money.
During the pandemic, the Biden administration relaxed barriers for parents and guardians to become paid caregivers. Congress increased federal support for Medicaid, in part so states could expand care delivery programs. According to a survey last summer by KFF, formerly known as the Kaiser Family Foundation, 37 states took advantage of the expansion to pay parents and guardians.
Kate McEvoy, executive director of the National Association of Medicaid Directors, said paid programs offered a way to meet family needs and save states money that would otherwise be spent on expensive institutional care. “They want to receive services at home or in the community, and it’s generally less expensive for the Medicaid program,” she said.
Now that federal funding is shrinking, some states are scaling back programs and tightening eligibility, while others are making paid care permanent.
Virginia initially imposed stricter regulations for parents to become paid caregivers, but lawmakers are now considering a bill to eliminate some requirements. Ohio made its caregiving program permanent, but eligible parents or spouses must prove they cannot hire an aide and paid hours are capped at 40 per week.. Iowa and Oregon are asking the Centers for Medicare and Medicaid Services to create new paid programs.
Ms. Poynter has been paid $15 an hour for eight hours of daily personal care, plus health insurance and retirement benefits through a nursing provider, Healing Hands, which contracts with the state and oversees her work.
Sonny is a happy child, who is just beginning to roll over and talk, but is completely dependent on his parents. Each day, Mrs. Poynter slowly feeds him liquid meals through a tube in his stomach, suctions sputum from the breathing hole in his windpipe, and cleans and bandages the openings of his airways and abdomen, as well as changing diapers and other baby routines.
On her phone, she clocks in and out for the hours she’ll be paid for, but the distinction seems arbitrary to her because Sonny is no less dependent on her when she’s gone. Paradoxically, she is required to sign out before administering medications because Medicaid considers that care to be specialized and she is only contracted for personal services. “My brain is in work mode pretty much 24/7,” she said.
Across the state, enrollment in the program and its costs skyrocketed. From March 2022 to February 2024, the number of children with disabilities or traumatic brain injuries who had paid caregivers increased six-fold, from 262 to 1,629, according to Indiana’s social services agency. Driving that growth were costs associated with nursing providers hired to oversee the program. Some providers competed to recruit caregivers, advertising online and offering $1,500 or more in signing bonuses and hundreds of dollars for referrals.
That contributed to skyrocketing spending on pediatric care, to a projected $173 million this year from $2.5 million in 2021.
Melissa Keyes, executive director of Indiana Disability Rights, an independent agency, said the state had dramatically underestimated demand and failed to take steps such as limiting hours that other states had imposed. “They didn’t necessarily have good guardrails about how that program should be managed,” she said.
The state approved nearly half of child care providers to work more than 60 hours a week, and a small proportion were approved to work 24 hours a day.
Indiana didn’t point out the rising spending until late last year, when an updated forecast for Medicaid showed $984 million in the hole. Agency spokeswoman Michele Holtkamp said the care program was just one of several factors in the shortfall, “but it was the most serious.”
State Sen. Ryan Mishler, a Republican who is chairman of the Senate appropriations committee, said that in some cases providers had billed the state more than $200,000 for the care of a single individual. “The whole point of home care is that they say it’s less expensive. But when you get that far, it really isn’t.”
The state’s social services agency maintains that caregivers can enroll in a Medicaid substitute program that it says is just as good. But it pays less, maxing out at about $34,000 a year. In the existing program, Ms. Poynter can earn about $50,000 a year, and other caregivers approved for more than eight hours a day receive substantially higher pay.
State Rep. Edward Clere, a Republican, attributed the outcry to the agency’s limited release of details. “Families are afraid of being told there will be big changes but not having enough information to understand what those changes will mean for them,” he said.
Families in rural areas may be especially hard-pressed to find help to care for their children. Indiana has 26 percent fewer home health aides than the national average, according to AARP.
Lydia Townsend, a service coordinator at Healing Hands who supervises more than 200 caregivers, including Ms. Poynter, said boundaries must be set to prevent any abuse of the system. But she worried the proposed cuts would put families at risk. “They are not going to have shelter and food like they can have now,” she said.
The fallout this year from the federal government’s reduction in Medicaid funding is spreading to many states at a time when their tax revenues are also falling. KFF projects that states’ spending on Medicaid will increase a whopping 17 percent this year.
Alice Burns, associate director of KFF’s program on Medicaid and the uninsured, asked what would be sacrificed if Indiana continued to spend so much on the care program: “Comprehensive services for pregnant women? Dental care for children? What are the services that people will have to do without?”
Poynter isn’t sure what it will do if the cuts are approved, but it ruled out turning to an outsider for help. She will probably take care of Sonny until her husband gets off work and then work night shifts as a waitress or barista. Compared to friends who are her only caregivers, she said she felt lucky.
But nothing could compensate for the time parents would have to spend away from their children, whose lives are precarious and often short.
“Tomorrow is not promised for them,” he said.
