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Like many other 6-year-old girls, Scarlotte Sell's excited to start first grade and laughs easily. She loves digging outside for worms and bugs to feed her pet turtle, Carlos, and running in the yard with her dog, Rocky.
Scarlotte also has an extremely rare genetic disorder -- one of three children in the world with her gene mutation -- and requires round-the-clock care to check her gastrostomy tube and catheter. But getting medically trained caretakers when her dad, Brandon Sell, is away from their Adams County home hasn't always been easy.
"Hanover is just not a saturated area," when it comes to skilled nursing, said Sell. "So it's really hard to get (someone) ... Nursing in this area is far and few between."
Demand in this sector is only increasing. Direct Care Workers (DCWs) are "one of the largest-growing job industries that we have here in the nation, and it has been growing across every state," said Mia Haney, the CEO of the Pennsylvania Homecare Association.
As of 2024, DCWs cared for nearly 21,000 children, many like Scarlotte, and roughly 155,000 adults, Haney shared. That count includes adults who are disabled and those who are aging.
"But in Pennsylvania, in particular, we're really starting to see more and more stagnant rates of workers coming into this (field) because our rates are so low that it is actually worth it for them to jump the border," said Haney.
Medicaid reimbursement rates in every neighboring state, from New York to West Virginia, are higher than Pennsylvania, where the average hourly wage for personal assistance services is $20.63. That puts families like the Sells, who live less than ten miles from the Maryland border, in a bind.
The turnover of nurses is hard on Scarlotte, Sell said, because "she gets attached." There was a four-month period when he couldn't find another provider when he almost lost his house because he couldn't work.
"If the compensation isn't fair, they're not going to be attractive," Sell said about home health nursing positions. "If (Scarlotte's nurse)'s getting $25 an hour, she's only going to do $25 an hour work."
Maintaining dignity
Industry lobbyists like Haney emphasize the importance of home health nurses in their communities -- whether caring for children, disabled adults or seniors.
"When people think about home care, they often think about older adults, but home and community-based care serves people across every stage of life," Haney said. "Without that support, many families reach a breaking point, and institutional care often becomes the only option -- a far more costly and less preferred option."
Skilled nursing allows someone to participate in their communities, Haney continued, enabling children to go to school or adults to keep a job without relying solely on family caregivers who are at risk of burning out.
While other states build semi-regular increases for these workers into their system -- similar to how pay for legislators increases annually -- Pennsylvania requires legislative action. That comes roughly every five or so years, Haney estimated, but wasn't included in this year's budget despite outreach efforts.
"But it's not consistent. It's largely dependent on advocacy work, and it's so dependent on our legislature," said Haney. "When we talk to legislators, it's always supportive ... and then when pen gets to paper and we have to find the money for it, we get nothing."
Studies estimate that upwards of $800 million is needed to raise wages, but Haney warns that the number is growing.
"There's not enough money, but we have this huge need, and so we just keep pushing this problem to the next year and it's snowballing," said Haney. "That $809 million that we calculated at the beginning of 2025 is likely a bigger number this year, because every year more and more people are using the program."
Children like Scarlotte make up only a portion of Pennsylvanians who need home health services. Most of those in need of home health services are aging adults, a population that is rapidly growing.
Some clients can be violent, Haney shared, and agencies will distribute keychains to employees that make loud noises and have flashing lights for patients who might be more inclined to attack someone. They're used to startle them, in order to defuse the situation. Others hid their declining health for years, creating "hoarding situations" or neglecting their home upkeep.
Sometimes, there are bedbugs in houses with no cleaning products, she continued.
"And we're going to pay you $13.50 to put yourself in that scenario," Haney said. "How do you ask somebody to do that and maintain your own sense of dignity?"
Part of the community
Brianne McKinsey, a licensed practical nurse, has been Scarlotte's home health nurse for roughly 18 months, providing much-needed consistency that gives Sell flexibility as an HVAC technician. When McKinsey misses a day, it triggers "a domino effect" and Sell then has to cancel his work commitments.
"If I'm not here, he doesn't work," said McKinsey. "If it's a school day, she just misses school."
To minimize disruptions, McKinsey consults a shared calendar displaying Scarlotte's frequent doctor appointments before making her own appointments, scheduling it simultaneously so her commitments don't inconvenience the Sells.
Overnight, another nurse monitors her dialysis and feeding tubes.
The consistency is also important for Scarlotte, who's "very big on routine," shared McKinsey.
McKinsey occasionally uses American Sign Language to communicate with Scarlotte, who uses both a traditional hearing aid and a cochlear implant. The young animal lover enjoys watching McKinsey's livestream of her chicken coop, but is still learning not to hit or bite the people she loves.
They're also working on introducing Scarlotte, who has her father's kidney, to new foods after years of intense acid reflux and vomiting dampened her appetite.
McKinsey -- who's studying to become a registered nurse, which comes with a pay increase -- said a lot of her fellow graduates work in nursing homes that pay "exponentially more," but she enjoys working with kids.
""You go through the stress of nursing school, you get your license and it's almost like a slap in the face that people who are fresh out of high school are working at a gas station making almost what you're making," McKinsey continued.
Haney said agencies leaving the state cited the law reimbursement rate as a key factor, but each departure makes the situation worse and worse.
"There will be more. There are more every single day, and this inaction really has a lot of people wondering if Pennsylvania will ever do what it needs to do," she continued. "We can't wait any longer."
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