By Rose Hoban
Finley Thomas is an 11-year-old girl who’s got a morning makeup and skin care routine. She loves Halloween, dressing up, her older brothers and cheering with her squad.
She also uses a wheelchair, has a tracheostomy tube that gets hooked up to a ventilator at night, receives tube feedings for much of her nutrition, and has multiple therapy sessions each week—all the result of a neurological condition she was born with that has recently required a couple of surgeries.
Just don’t tell Finley that any of those things are going to slow her down. When asked what she wants to be when she grows up, she quickly responds “a princess.” Or a makeup artist. Or a hairdresser.
Her mom, Jennifer Thomas, says Finley is her “social butterfly.” In a N.C. Legislative Building atrium in Raleigh on May 12, Finley was surrounded by a cortége of admirers. She chatted and laughed with the adults in her circle.
“Her personality is huge,” Jennifer said. “She does cheerleading, you know, she has friends. We go on adventures. We take her places, parks, play dates, you know, just making sure she’s getting out into the community.”
All this activity is possible through the state’s Medicaid Community Alternatives Program for Children, or CAP/C. The home- and community-based services program provides the Thomas family with round-the-clock nursing care to help with all of Finley’s needs.
The Thomases took part in an advocacy day at the legislature to give lawmakers a better understanding of the kinds of services and personal care that more than 58,000 people receive in various community-based programs that help them stay in their homes with their families.
These services can be expensive. An in-home nurse costs the state’s CAP-C program about $123,965 a year on average. While that number might seem eye-popping, it could cost closer to $200,000 a year for a child like Finley to live in a skilled nursing facility. Then take into account the psychological toll that living in an institution would have on such a gregarious, bubbly little girl. For people with greater needs, the facility costs, on average, could be closer to $311,000 annually.
“Obviously a facility would not be an option for us,” Jennifer said. “She’s so social.”
But the One Big Beautiful Bill Act, (also known as H.R. 1), the federal budget plan passed by Congress last year, contains close to a trillion dollars in cuts to Medicaid over the coming decade.
Passage of the bill sent a chill through families like Finley’s. Their fear is that you can’t slice that kind of money out of the nation’s Medicaid system and expect kids like Finley not to be affected. And while many of those cuts are aimed at ostensibly so-called able-bodied adults who receive benefits on the program, families like the Thomases know that in a challenging budget environment, a cut’s a cut and the services keeping their families intact are at risk.
Wages not keeping up
About 58,000 people in the state rely on Medicaid for nursing or home health aide services that allow them to remain in the community with their families.
One of the challenges, for the Thomases and other families, is that the wages paid through Medicaid to professionals in vital, physically demanding and often emotionally challenging caregiving jobs have not kept up with the wider employment market. Home care aides, the least-skilled care providers, earn, on average, $15.30 an hour. Working at an Amazon warehouse pays about $23 an hour.
“You know, you can work in retail, making more money and less stress,” said Lee Dobson, one of the leaders of BAYADA Hearts for Home Care, an advocacy group that supports families who need care at home.
Home care agencies have more needs than their current workforce can meet. About 20 percent of home care aide positions go unfilled at any given time. “And then the turnover, just churn,” Dobson added, runs between 50 percent and 80 percent. “You’re just always trying to recruit staff.”
Those people who provide Medicaid-reimbursed personal care services received a bump in pay near the end of the pandemic. That helped retention, but advocates are afraid that those dollars could go away as North Carolina’s Medicaid budget will be under increased pressure this budget cycle.
Dobson said several bills have been introduced that would fund all these services, plus supply $120 million to increase salaries for personal care service providers. None of those bills have moved past the introductory stage.
There’s an additional request from advocates to bump up the private duty nursing rate; that would require a $20 million investment. Nonetheless, that wouldn’t get nurses who provide this care up to the pay level that hospitals offer. And it still would be much less than what home care nurses earn in surrounding states.
“I think, fundamentally, what we want this year is we want to make sure that Medicaid gets funded,” Dobson said. She said they want to maintain services, even though they will cost more than they did last year.
“The industry cannot go back to what happened in October,” Dobson said, referring to cuts made to the Medicaid budget last fall when the legislature had not completely funded all of Medicaid’s annual needs.
Despite the steep price tags, Dobson argues that these home-based services save taxpayer dollars. The1991 Americans with Disabilities Act and the subsequent 1999 Supreme Court Olmstead decision affirm the right for people with disabilities to be integrated into the community, but home-based Medicaid services are still optional under federal law.
Dobson said the home care industry estimates that North Carolina will need 186,000 aides by 2028, but will likely be about 22,000 people shy of that number.
It could be even more difficult to keep nurses interested in working in community-based care programs. There’s already a projected shortage of as many as 12,500 nurses by the end of the decade. As demand for their services grows in other parts of the health care system, which traditionally have offered higher pay, the prospect of nurses making $25 to $27 an hour could be a long-term deterrent.
NC Medicaid programs for medically fragile and disabled people
- Community Alternatives Program for Children (CAP/C): available to people younger than 21, provides in-home services for medically fragile children as an alternative to hospital or institutional-based care. Recipients go through a needs assessment and annual updates. 4,125 current recipients.
- Community Alternatives Program for Disabled Adults (CAP/DA): available to adults 18 and older, also provides in-home services for people who are medically fragile and at risk of being institutionalized for their care. The program is intended to supplement, rather than replace paid and family-provided services available in the community (for example, family supports). 9,033 current recipients.
- Community Alternatives Program – Choice (CAP-Choice): Allows the disabled person or their caregiver to act as the “employer of record,” giving them direct control over who provides care and how services are scheduled. The person or their caregiver is responsible for hiring, training, scheduling and supervising their care assistants. 3,566 current recipients.
- Innovations Waiver: The Innovations Waiver allows for enhanced community services, such as job coaching, crisis services, services for caregivers, home modifications and assistive devices, without taking into account family income or other typical Medicaid eligibility requirements. Currently, 11,695 people receive Innovations services, while 20,893 are on a waiting list for the program. The wait time for receiving a slot in the program is as much as 20 years.
- Personal Care Services: Helps people with daily tasks like eating, getting dressed, taking a bath, using the bathroom, etc. Recipients must have a medical condition, disability or cognitive impairment to qualify and be able to demonstrate unmet needs. Currently, 42,059 recipients.
Lifelong needs
Not all recipients of the Community Alternatives Programs are children. Kids with disabilities age, and they become adults with disabilities for whom much of the care continues to fall on their parents.
That’s the story for Janet Schmitt, whose son Kevin is 30 and is profoundly disabled as a result of daily seizures — sometimes more than one.
“He has the mental capacity of an 8-year-old,” Schmitt said. She also said Kevin is on the autism spectrum and has had brain injuries from frequent seizure-related falls.
“We have severe cognitive decline, functioning,” Schmitt said at the advocacy day. “He’s had two brain surgeries. We attempted three others that were not successful.”
“I have gone way above and beyond even some not-so-conventional methods to keep him with us,” Schmitt added. “That’s why we’re here, because he thrives in the home environment. If he were to be taken out of that environment — just like anytime we’re hospitalized with his medication regimen, it’s always mixed up, confused in the hospital. It takes us about three months to rebound from that. Then seizures are manifest even more frequent because it’s a different environment.”
Because Kevin has qualified for Medicaid’s Innovations Waiver, Medicaid pays Schmitt an hourly rate to be Kevin’s caregiver. Medicaid also pays for help from an outside caregiver two days a week. That’s when Schmitt crams in errands like shopping and all of her medical appointments — she was diagnosed with leukemia several years ago.
Part of Schmitt’s “above and beyond” included returning to school when she was 42 to become a nurse so she could better care for Kevin and navigate the health care system. Twenty years later, she’s retired from nursing work and is hoping her husband can retire later this year to help with Kevin’s care.
She’s worried about what happens “after,” especially since her diagnosis and a medical crisis a couple years ago when she was told she had only weeks to live.
“I do honestly think Kevin will outlive me,” she said. “In the event that that does happen, you know the care is gonna fall on my husband, and for one person, you know, it’s a lot, without the assistance and being able to, you know, even have the break.”
No one expects these disabilities
Jennifer Thomas said right now, they’re feeling lucky with the people who care for Finley.
“We’ve had the same nurses for a while. Our night nurse we’ve had for 10 years; she works Friday, Saturday, Sunday, Monday nights,” Jennifer said.
“Then our other night nurse, he’s been with us for seven years, and Sandra’s been with us for four years,” she said, gesturing to the nurse standing in the group surrounding Finley.
That wasn’t easy, though. Jennifer estimated the family cycled through 50 nurses during Finley’s first decade. Even once they found reliable, skillful help, there are still holes.
“Nurses do take vacations. We had times where we’d go a week without having overnight nursing care,” she said. “It was really hard on our older children, you know, it was really hard on us. It was hard on our marriage, it was just hard on any relationships that we have when you’re not sleeping.”
Although some who are unfamiliar with what these families go through still consider home-based care optional, the advocates at the General Assembly hope to persuade legislators that it’s not only necessary, but a cost-saver over institutional care. Medicaid reductions from H.R. 1 will start hitting state budgets in the coming year, compelling lawmakers to make decisions about what to cut.
Thomas and the other advocates believe they have a strong case to make, but other states — Nebraska, Idaho, Colorado and Missouri — are contemplating cutting services, even to those families with profoundly disabled members. Maryland has already decided to move ahead with them.
Thomas and her husband run a small business that employs 20 people, they’ve been able to grow it, even as they’ve had to cope with their family’s medical challenges. Her husband is the business lead, Jennifer is the administrator.
Cutting their Medicaid would affect their ability to be contributing members of society, something she and her husband don’t want to have happen.
“I don’t think anybody expects to have a medical crisis or have a child with disabilities,” she said. “But it happens, and it’s important to have support out there.
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