HARDEEVILLE, S.C. — Every day during what seems like an endless quarantine, Judith Persutti assigns herself a chore. So far she’s washed the curtains and dusted the miniblinds in the little country house where she is sheltering in place with her oldest granddaughter.
Stop to rest when the fatigue sets in. Lie down when the pain becomes too much.
And, of course, check the mail.
She’s waited more than a month for a letter to come from the state’s Medicaid agency telling her whether she will be reinstated on the federal-state health insurance program for low-income families or individuals who are aged, blind or disabled.
Now, with South Carolina — like states throughout the nation — suddenly consumed by an unprecedented crisis that has the country’s health and wealth in a vise grip, Persutti wonders if her letter will ever come. The safety net is already severely strained, and she realizes the tangled bureaucracy handling her appeal now is scrambling on so many urgent fronts that resolving individual problems is likely to get pushed to the bottom of the pile.
“Medicaid is stalling in hopes I catch the virus,” she quipped in a recent text message, her gallows humor not lost to the stress of the pandemic.
In the span of a few weeks, the 64-year-old, whose grandchildren occasionally call her “nanosaurus,” has gone from barely thinking about COVID-19 — or really even knowing what it was — to losing sleep over yet another threat to her health.
She has osteoarthritis and fibromyalgia, hypertension and asthma. She’s supposed to take a mix of prescription medications for pain, inflammation, blood pressure and anxiety, but she can’t afford them all.
She squeezes by on $739 a month in Social Security and an additional $149 in food stamps; her platinum-gray hair has grown into a bob because she can no longer spare the price of upkeep on a beloved pixie cut. And the pain from squatting, standing or walking for long periods has made it impossible for her to hold a job.
There was a brief moment in the fall when the state gave her Medicaid, saying she qualified based on her disabilities and low income. It lasted a month. Then, the state took it away with little explanation other than it had made a mistake.
Determined to fight the decision, she appealed, traveling about two and half hours to the state capital, Columbia, to prove that she is disabled to a hearing officer at an administrative proceeding. It was just before the global pandemic erupted in the U.S., spreading fear of the novel contagion as far as Persutti’s one-stoplight town.
Persutti is one of the country’s 28 million uninsured adults, many with chronic illnesses that make them particularly vulnerable to the dangers of COVID-19. The Affordable Care Act was meant to give access to insurance to all Americans. But 14 states, including South Carolina, have declined to expand Medicaid qualifications under Obamacare. And even for those who seem to qualify, like Persutti, actually getting and maintaining Medicaid can be a byzantine, frustrating, even futile process.
Now, isolated with her 27-year-old granddaughter Karlie, she knows that her age and chronic health conditions make her especially vulnerable to a virus that has no cure, antiviral drug or vaccine. And without Medicaid, she faces it all with no health insurance.
Persutti must have gone through eight drafts of her testimony the night before her hearing to appeal the state’s termination of her Medicaid coverage. Sitting in her bedroom sanctuary, with windows overlooking a backyard near the Savannah River that often fills with grazing deer, she crossed through lines, ripped out notebook pages and tossed them aside. How to describe the ways chronic pain has forced her to modify her life?
Finally, she arrived at a summary and wrote it into a purple-and-white floral notebook:
Although I possess the skills to work in an office setting, I’m unable to sit or stand for any length of time due to the pain in my hips and knees from the osteoarthritis. I also have fibromyalgia, which being so unpredictable, as to when a flare up will hit, I cannot commit to a set schedule. I have been prescribed medication. But I cannot drive, let alone stay focused on the job while taking it. So it’s like a Catch-22 situation.
The coronavirus was only a distant rumble as she prepared for the hearing, something then seeming to affect only faraway places like China and Italy. Folks in her town, a largely rural area a short drive from the luxury resorts of Hilton Head Island, were barely noticing. President Donald Trump, who visited the state the night before the first-in-the-south Democratic presidential primary, was still calling the disease “a hoax” stirred up by political rivals and a distrustful news media.
Persutti watched a conservative wave sweeping Columbia, touting work requirements that would make it harder to get Medicaid, which cost about $7.7 billion in 2019 — or about 17% of its budget — in a state that has historically taken a harsh view toward public benefits. And it bothers Persutti, who is white, that at times it seems “different races other than just white ones, plain white ones, Caucasian ... are targeted.” About 46% of the state’s Medicaid recipients are black, 40% are white and 9% are Hispanic.
South Carolina recently received approval from the Trump administration to impose work requirements on nondisabled adult Medicaid recipients, a change the state estimated would reduce the rolls by as many as 7,100 recipients.
Other states were doing the same; 10 received federal approval, though court injunctions paused implementation in most of them.
And in the midst of all that, Persutti needed to convince South Carolina’s health agency to add her back to the rolls, that stripping her coverage after only a month was unjustified.
For years, Persutti had worked two jobs at once, raising her daughters alone. Her days started before sunrise when she’d make dinner, put it in the refrigerator, then bike to her customer service job at a carpet cleaning company. At shift’s end, she’d bike to a supermarket deli, work until 10 p.m., and then pedal home, where she often collapsed fully clothed across the bed.
“I look back on it, and I don’t know how I did it. I never rested. Never,” she said.
Then she worked for 16 years for a friend’s cab company — first as a driver, then as a dispatcher — until sitting for 12-hour shifts became untenable.
“I remember the last night I dispatched,” she recalled. Her leg hurt so bad she had to be helped to her car. “I told them, don’t ask me anymore.”
She retired, and her long quest to secure Medicaid began soon after. She first applied in July 2018. It took the state nine months to begin vetting her application and an additional six months to approve her.
While she briefly had coverage, she began making the doctors appointments to get caught up on some tests and procedures. Then, a letter dated Nov. 26 arrived around Thanksgiving abruptly canceling her coverage. The explanation: “You do not meet the rules of age or disability.”
The letter mentioned her constitutional right to appeal. The Supreme Court in 1970 ruled that state and federal governments can not deprive anyone of public benefits without giving them the opportunity to adjudicate their case at a fair hearing.
The Trump administration has cited the right to a hearing as one of the “guardrails” protecting “vulnerable” Medicaid beneficiaries while moving to save money by making it harder to enroll. In November, CMS Administrator Seema Verma said imposing work requirements would help beneficiaries live “a life that knows the dignity of a job.” Now, amid the COVID-19 outbreak, the administration loosened Medicaid rules allowing states to respond more freely to the crisis, and new federal laws say states can’t kick someone off Medicaid or make enrollment more difficult (such as by imposing work requirements) until the public health emergency designation ends. So anyone who was enrolled in South Carolina’s Medicaid as of March 18 gets to keep it for now, according to the state.
To “help stop the spread of COVID-19” while still fulfilling “its critical public health mission,” South Carolina’s Department of Health and Human Services said in a statement Tuesday that it’s closed local eligibility offices to walk-ins but is maintaining normal business hours and opened its call center on Saturday so people can “complete any action they would” normally do in person over the phone or online or through the mail.
The state said it is trying to make provisions to continue hearings and appeals to ensure “the civil rights of our members ... during this period of important social distancing” but did not answer questions about the status of pending cases.
Persutti appealed South Carolina’s rejection, but most people on Medicaid in the state — and elsewhere — never do. Just over 1 million people are on Medicaid in South Carolina, a state that processes applications and eligibility reviews by the tens of thousands annually. Last year, according to the state, 3,711 appeals were requested but only 101 hearings were held. It’s an eligibility and appeals system whose own employees have criticized it as being error-filled and opaque, creating delays for people needing coverage. Too many hands touch a single case file, said a 2017 report, and each time a file is given to a different employee, the chance of error increases. The result, the report said, is that “some clients are receiving benefits they are not qualified for and some are not receiving benefits when they should be.”
South Carolina’s DHHS said late last month that it’s dedicated to an “environment of continuous improvement.” And partly as a result of the feedback from state Medicaid managers studying various parts of the system, the agency has opened three new processing centers and created a team to review eligibility determinations.
Persutti no longer drives, so her daughter and Karlie took her to the hearing, where she used a walker to step into the Jefferson Square government building. At the time, the interstate to Columbia still bustled and people were unaware of what was about to hit.
Persutti imagined her hearing taking place in a formal courtroom before a panel of “old men smoking stogies.” Instead, she and Karlie faced Colleen Clark, the presiding hearing officer, and Jan Easton, who represented the state, in an unremarkable 11th-floor conference room with a box of tissues on the table.
The hearing took about an hour. And the language at times — many times — was so dense, technical and jargon-filled that Clark often stopped to translate it into something comprehensible.
Clark’s questions probed Persutti’s thick medical file, including at least two different medical evaluations done at different times that reached different conclusions about her ability to return to work. “I can’t give you a reason” why, Easton said of the discrepancy.
As for Persutti: What’s an average day like? (Unpredictable.) How many bad days in a month? (At least 10.) Was the walker you are using prescribed by a doctor? (No.) Pain medications? (Yes.) Are they controlled substances? (Some.) Did you sign for them? (Yes.)
“I do have a question,” Karlie interjected. “She was sent an acceptance letter, and then a month later it was overturned.”
Clark said the agency “accidentally approved you.” She called it “a processing error in your favor.”
As the hearing wrapped up, Clark said it might take a while to reach a decision and a letter would be sent to her home, typically in 30 days although there’s no set time frame.
Persutti returned to Hardeeville hopeful and started watching her mailbox as the world abruptly shifted.
It’s hard for Persutti to feel optimistic as time passes — and not just because of COVID-19.
Three days after her Medicaid hearing, a letter came from the South Carolina Department of Social Services saying the state gave her too much in food stamps last year, overpaying her by about $42 a month and demanding its money back.
It took a week of phone calls and paperwork to sort out the miscalculation so that she did not have to repay it.
Then came a phone call from her doctor’s office, which has a sliding pay scale for uninsured patients like Persutti.
The doctor wanted to make sure she was up to date with her prescriptions and cautioned her to stay inside.
But she still hasn’t heard from Medicaid.
And right now, she wonders if she ever will.
Kirsten Berg contributed reporting.