Kacey Poynter doesn’t have to travel far to get to 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 birth defect that impaired his brain development and required near-continuous care just to breathe and eat. Ms Poynter quit her job at a call center when she brought him home from hospital and has cared for him ever since rather than relying on supports or institutions. Indiana’s Medicaid program paid her for this labor of love.
“It honestly changed my life to be able to be here with him and not worry about someone else trying to take care of him,” she said.
But her ability to continue caring for him is now in doubt. The Indiana Human Services Agency 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 who care for children and spouses who care for their partners should enroll in a different program for much lower pay.
The fear, for people like Ms Poynter, is that they will have no choice but to return to work and seek help with home care amid a growing national labor shortage caregivers and nurses.
During the coronavirus pandemic, states received a huge infusion of federal money — money that is now drying up, leaving Indiana and many other states facing tough choices about how to plug gaping holes in their budgets .
Panicked, Indiana parents who rely on those payments held weekly rallies at the Statehouse, some carrying their children. With the state legislative session ending as soon as Friday, it’s unclear how the proposed cuts will play out.
Lawmakers point to budgetary challenges and the blurred line between the superior care worth paying for and the duties all parents owe to their children.
“Many lawmakers are 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 made the choice not to work outside the home, to care for their loved one, because no one else can do it and certainly can’t do it as well than them.”
Indiana Lieutenant Governor Suzanne Crouch, a Republican running for governor, called the social services agency to postpone the cuts and required an external 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 People with chronic illnesses or disabilities receive home and community-based services funded by Medicaid, the government health insurance program for low-income people. Most are adults, but a growing share are children with serious health problems who may need both skilled services and help with daily tasks like 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 played a supportive role. In many states, relatives may be paid to provide some of this care, but Medicaid programs are generally more restrictive in paying relatives who are believed to be obligated to care for their children. children out of duty rather than for money.
During the pandemic, the Biden administration has eased barriers preventing parents and guardians from becoming paid caregivers. Congress increased federal support for Medicaid, in part so states could expand their care programs. According to an investigation last summer According to 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 fee-for-service programs offer a way to meet families’ needs and save money that might otherwise be spent on expensive institutional care. “They want to be served at home or in the community, and it’s generally less expensive for the Medicaid program,” she said.
Now that federal funding is declining, some states are cutting programs and tightening eligibility requirements, while others are making paid care permanent.
Virginia initially imposed stricter regulations for parents to become paid caregivers, but lawmakers are now considering Bill to lift certain requirements. Ohio made its care program permanent, but eligible parents or spouses must prove they can’t hire help, and paid hours are capped at 40 per week.. Iowa And Oregon call on the Centers for Medicare & Medicaid Services to create new fee-for-service programs.
Ms. Poynter received $15 an hour for eight hours of daily personal care, as well as health insurance and retirement benefits through a nursing provider, Healing Hands, which contracts with the State and supervises its work.
Sonny is a happy child, just starting to turn around and talk, but he is completely dependent on his parents. Every day, Ms. Poynter slowly feeds him liquid meals through a tube placed in his stomach, suctions sputum from the breathing port of his windpipe, and cleans and bandages the openings to his airway and abdomen, in addition to changing diapers and other baby routines.
On her phone, she marks the arrival and departure times for which she will be paid, but the distinction seems arbitrary to her because Sonny is no less dependent on her when she is on leave. Ironically, she is required to clock in before administering medications because Medicaid considers it skilled care and she is only hired for personal services. “My brain is in work mode pretty much 24/7,” she said.
Statewide, enrollment in the program and its costs have soared. From March 2022 to February 2024, the number of children with disabilities or traumatic brain injuries who received paid care increased sixfold, from 262 to 1,629, according to the Indiana Human Services Agency. This growth has been fueled by costs associated with nursing providers contracted to oversee the program. Some providers compete to recruit caregivers, advertise online and offer $1,500 or more in signing bonuses, and hundreds of dollars for referrals.
This has contributed to soaring spending on care for the pediatric population, which is expected to reach $173 million this year, up from $2.5 million in 2021.
Melissa Keyes, executive director of Indiana Disability Rights, an independent agency, said the state has significantly underestimated demand and failed to take steps such as capping business hours that others have mandated. States. “They didn’t necessarily have good safeguards in place for how this program should be managed,” she said.
The state approved nearly half of child caregivers for more than 60 hours a week, and a small portion were allowed to work 24 hours a day.
Indiana only reported the spending increase late last year, when an updated forecast for Medicaid showed there was $984 million in the hole. Michele Holtkamp, an agency representative, said the care program was just one of many factors explaining the shortfall, “but it was the most serious.”
State Sen. Ryan Mishler, a Republican who chairs the Senate Appropriations Committee, said that in a few cases, providers billed the state more than $200,000 for a single person’s care. “The good thing about home care is that they say it’s cheaper. But when it comes to that point, that’s actually not the case.
The state’s social services agency maintains that caregivers can enroll in an alternative Medicaid program that it says is just as effective. But it pays less, maxing out at around $34,000 per year. Under the existing program, Ms. Poynter can earn about $50,000 a year, and other caregivers allowed to work more than eight hours a day are paid much more.
State Rep. Edward Clere, a Republican, blamed the outcry on the agency’s limited release of details. “It’s scary for families to learn there are going to be major changes, but not have enough information to understand what those changes will mean for them,” he said.
Families in rural areas may have particular difficulty finding help to care for their children. Indiana has 26 percent fewer home health aides than the national average, according to AARP.
Lydia Townsend, Healing Hands service co-ordinator who supervises more than 200 carers, including Ms Poynter, said limits should be set to prevent abuse of the system. But she worried the proposed cuts would put families at risk. “They won’t have shelter and food like they can have now,” she said.
This year, the consequences of the federal government’s reduction in Medicaid funding are impacting many states, at a time when their tax revenues are also declining. KFF projects that state spending on Medicaid will increase 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 services will people have to do without?
Ms Poynter is not sure what she will do if the cuts are approved, but she has ruled out turning to a stranger for help. She will likely take care of Sonny until her husband quits his job, then take evening shifts as a waitress or barista. Compared to friends who care for their child alone, she says she feels lucky.
But nothing could compensate for the time that parents would have to spend away from their children, whose lives are precarious and often short.
“Tomorrow is not promised to them,” she said.
