Invisible Army: Caregivers on the Front Line: Part of an occasional series supported by the Solutions Journalism Network
James Hogan II nearly faltered as the full-time caregiver to his wife and three children—all of whom suffer from varying long COVID-19 symptoms—during a recent grocery store run.
Instead of sticking to his short list, Hogan got confused and bought a week’s worth of food. He too faces lingering fatigue and brain fog 16 months after COVID-19 infected every member of his upstate New York household.
The severity of his mistake hit when he opened the cupboards at home, revealing a fully stocked pantry and fridge. The family could ill afford wasting the extra food after burning through its savings — close to $18,000 — due to their collective pandemic nightmare.
“I’m constantly trying to find the right balance between where long COVID is drawing the line and getting my kids to school,” said Hogan, who shoulders caregiver tasks despite being a 50-year-old disabled military veteran with post-traumatic stress disorder and chronic back pain.
That seemingly endless search for balance also plagues Desiree Chambers, a 52-year-old living alone in Troy, who is battling a lingering cough and serious breathing problems eight months after contracting COVID-19.
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The situation is mirrored in countless families around New York and the nation as home care workers, who are often paid less than fast food workers and receive fewer benefits, leave the field because they can’t pay their bills. Some residents with disabilities sleep in their wheelchairs at night instead of being transferred to a bed, because they’re unsure if they’ll have an aid to get them up in the morning.
After 33 harrowing days in the hospital, Chambers is now making a painstakingly slow recovery at home, with her three adult children initially serving as her around-the-clock unpaid caregivers. She longs for the day when she can return to playing outside at parks with her six grandchildren.
“They kind of understand that some things I can’t do, so they don’t really ask any more,” she said.
In many ways, the unknowns surrounding long COVID-19, including the death of treatments and barriers to accessing support programs, have left Hogan, Chambers and millions of Americans facing the illness trapped in limbo.
“I feel like I’m failing my kids in getting them all the help that they need because we’re all still trying to figure out what we do need,” Hogan said.
NYC program supports long COVID survivors
USA TODAY Network interviewed caregivers, policy makers and advocates, who spoke of the patchwork of efforts aimed at connecting long COVID-19 sufferers, and those who care for them, to health care and government programs.
One of the efforts is in New York City, which launched the Aftercare program in April 2021.
Initially, Aftercare used the city’s formal COVID-19 contact-tracing program, called Test & Trace, to call and text people who reported lingering symptoms. It then grew into its own program, deploying a web of health outreach experts to walk people through their long-term bouts with COVID-19, and connect them with resources based on their specific health and social needs.
Aftercare’s early successes also fueled mounting attention around the issue at the statewide and federal levels recently, despite the fact long COVID-19 still lacks a formal definition. It is generally described as symptoms that linger more than one to three months after a COVID-19 infection.
The group includes people who have severe cases of disease and are still recovering months later, along with those who have milder infection but suffer paralyzing exhaustion, racing heartbeat, unending headaches, mood disorders, lingering loss of smell or other symptoms.
How is the program working?
The Aftercare program has contacted more than 110,000 COVID-19 cases, and referred more than 50,000 New Yorkers to long COVID-19 treatment clinics and other aid.
Similar to the broad range of symptoms facing long COVID sufferers, Aftercare’s website and navigators facilitate links to programs offering everything from mental health services and community support groups to disability claims, health insurance subsidies and paid sick leave for caregivers.
In other words: Aftercare served as a one-stop shop for those seeking government and community support related to long COVID-19.
In March of this year, Aftercare launched an inbound calling hotline, as the city and other levels of government statewide moved to reduce contact-tracing efforts, in part, due to the massive wave of omicron variant infections and increasing vaccination rates that limited the effectiveness of contact tracing.
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As Aftercare’s transition away from contact tracing unfolded, the prospect of reductions in federal COVID-19 funding also threatened to hinder any long-term pandemic-related plans.
State and local health departments also faced challenges in replicating Aftercare’s success so far due to the lack of long COVID-19 treatment clinics in many communities, as well as historically underfunded public health agencies.
Outside of the massive health infrastructure in the New York City area, hospitals and health departments in many other communities lacked the financial resources and staffing to support the cutting-edge medical care and community outreach targeting long COVID-19.
Further, a range of state Office for Aging programs aimed at helping older New Yorkers access in-home caregiver support and related services also failed to efficiently allocate millions of dollars to local affiliates since 2019, despite growing wait lists for help, according to a state Comptroller’s audit in January.
State health officials, however, held a long COVID forum in February, bringing together leaders from health care, social services, and government, with the goal of shaping future policies to improve society’s overall approach to the condition.
The event identified a range of potential government actions — including improving how Medicaid and other health care programs define and treat long COVID-19 in a multi-faceted way. But state officials have yet to announce and implement specific measures linked to the effort.
At the federal level, the Biden administration recently announced a major effort to help Americans with long COVID-19, including providing insurance coverage, expanding support for clinics and enhancing research into the condition. It builds upon $1.15 billion allocated nationally last year to an initiative called RECOVER, which aims to advance understanding of, treat and prevent long COVID-19.
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Backlog of disability claims
Meanwhile, thousands of long COVID-19 sufferers were among nearly 1 million Americans awaiting determinations on federal disability claims earlier this year, a 21% increase from the same time in 2021, according to federal data and advocates. The backlog stemmed in part from in-person services being closed for 17 months amid the pandemic.
“What they’re waiting on is certainly money, which is important to anybody, but in many cases the disability determination can be the path to health care,” said Stacy Cloyd, a policy expert with the National Organization of Social Security Claimants’ Representatives .
Yet for Hogan — whose 42-year-old wife, Rebekah, suffers from debilitating COVID-related brain fog comparable to early onset dementia — even getting started with filing for her federal disability benefits seems like an insurmountable task while he cares for his entire family in Latham, just outside Albany.
“Basically, every day is just survival mode,” he said.
What we know about lingering symptoms:Is long COVID a syndrome or a series of coronavirus complications?
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This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group is supported by the Solutions Journalism Network.
The collaborative’s first series, Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to challenges facing caregivers of older adults.
David Robinson is the state health care reporter for the USA TODAY Network New York. He can be reached firstname.lastname@example.org and followed on Twitter:@DrobinsonLoHud