WALTON, Ky. — One-year-old Harper McKinney’s medication schedule, written in pink and purple marker on a living-room dry erase board, runs from 8 a.m. to 8 p.m. each day and includes eight different medicines. Below the names and dosages are lists of accompanying medical equipment, some filed under "clean daily" (flex tubing, syringes, bottler and pitcher, nebulizer piece) and others under "toss daily" (catheter, feed bag).
There’s no such thing as a nest egg for a single-income family with a child this sick.
As the United States’ partial government shutdown edged into its 21st day, Harper’s family was weeks deep in panic. Allie McKinney and her daughter rely entirely on the income of her boyfriend, IRS worker Chris Rachford, who has worked without pay since Dec. 22.
Harper was born weighing just over a pound and unable to breathe without a ventilator. She spent the first 302 days of her life at Cincinnati Children’s Hospital. When she was allowed to come home, Allie became her stay-at-home medical caregiver and covering her medical costs became the family's sole financial priority. Rachford's job pays for the things Medicaid doesn't.
“I think I cried for the first three days of it (the shutdown) because I knew we were already so behind,” Allie McKinney said Thursday night.
Rachford and other federal workers will miss their first paycheck of the shutdown Friday as President Donald Trump continues to spar with Democrats over his demand for billions in border wall funding.
The family has no savings due to the cost of Harper's care, and relatives can’t do anything to help, McKinney said. Many of the fees they don’t handle out of pocket are covered by federal programs that could also face interruption if the shutdown were to continue long enough.
WIC, for example, pays for Harper’s special formula.
“I don’t think Trump really understands what’s going on,” McKinney said. “I don’t think he sees what the real people do and his workers do. He just thinks, ‘I’m going to shut it down, and I’m just going to be done with it, and no one’s going to work.’”
Rachford voted for Trump in 2016 but said the shutdown and other recent events have made him regret that decision.
“We’re all scrounging,” he said of his fellow IRS workers. “Everybody’s talking about how they’re going to pay their next rent, how they’re going to pay their next mortgage bill.”
His family has secured extensions from some of its creditors since the shutdown began. Their landlord agreed to let them pay a late fee on their rent.
At this point, McKinney said, they have no choice but to swallow that mounting debt, point others toward their GoFundMe and hope the shutdown ends before the good will of strangers.
“We have no other resources to tap into,” she said. “I don’t know how many months or how much stuff we can get behind before they just say, ‘We can’t help you anymore.’”