It’s easy for Democrats to become frustrated at the “look at me” antics of Joe Manchin, prima donna senator from West Virginia, as he forces the Biden administration to indulge in a pointless exercise of jumping through hoops for Senate Republicans in hopes of achieving some imaginary bipartisan agreement on the president’s infrastructure bill. But there is a group of Americans who have a far more existential stake in ending Manchin’s self-serving behavior. They are the parents of children with complex disabilities, for whom passage of the infrastructure legislation may mean the difference between life and death.

As reported by The New York Times, part of the fallout from the COVID-19 pandemic was a sudden shortage in home health care professionals, specifically a drastic collapse in the number of home care nurses, including those who had assisted hundreds of thousands of American parents in caring for children with disabilities. 

Pastor Brenda Barnes is vaccinated by nurse Marie St. Jean at Hartford HealthCare St. Vincents Medical Center in Bridgeport, Connecticut on February 26, 2021. - Nine local clergy members were given the Pfizer-BioNTech Covid-19 Vaccine, aiming to educate and inspire their parishioners and minority communities to get vaccinated. (Photo by Joseph Prezioso / AFP) (Photo by JOSEPH PREZIOSO/AFP via Getty Images)
Many former home health care nurses are now administering the COVID-19 vaccine in clinics and hospitals.

Faced with dire, existential issues of their own as the result of the pandemic, many of these low-paid nurses found other, better-paying jobs at hospitals or simply dropped out of the profession altogether. Because theirs is a comparatively thankless field of work, with grueling hours, highly variable working conditions (in addition to dismal pay), and few, if any, benefits, these nurses are not exactly flocking back to work.

The shortage of home nursing care was already part of an alarming trend, particularly for the aging Baby Boomer demographic, prior to the COVID-19 pandemic; the loss of these caregivers as occasioned by the pandemic is expected to push that shortage to crisis levels in the coming years.

From The Times:

“This is as bad as it’s ever been,” said Liz Wise, who works for the nationwide nonprofit Bayada Home Health Care, helping transition young patients from hospitals to homes. Her own daughter needed home-care nursing, so she feels it keenly when patients can’t get the coverage they need. “Disappointing families is enough to keep me up at night.”

A significant portion of the infrastructure legislation now being held hostage by Sen. Manchin’s performative intransigence—specifically, $400 billion over the next 10 years—is dedicated to funding and expanding home health care programs.  Not coincidentally, it is these provisions that Republicans adamantly refuse to agree to, claiming that home health care should not be considered part of the nation’s infrastructure, which they consider limited to physical things such as roads, bridges and airports. If the Republican Party had any intention of agreeing to provide such funding in other legislation, this semantic chicanery might be tolerable. However, as President Joe Biden is acutely aware, the Republican Party—whose only priorities while in power were legislating a massive tax cut for the nation’s wealthiest and killing the Affordable Care Act—will never, ever agree to provide funding that mainly impacts less well-off American citizens.

The Times’ Ted Alcorn, with photography by Brittainy Newman, graphically conveys the fallout caused by this shortage of home care. Desperate parents grapple with the emotional and financial impact of being forced to medically care for their children with no assistance. Many have been forced to take on round-the-clock care regimens, which end up devastating their own lives, wreaking havoc on their ability to stay employed, and putting their helpless children at further risk from inadequate care. While it may not have been his intent, Alcorn’s article could not provide a better, more searing argument for why such care should be considered as part of this nation’s infrastructure. 

As Alcorn explains, because the exorbitant cost of continuous home health care for these children would bankrupt most families, such care is often provided through Medicaid; however Medicaid typically allots only 2% of its federal outlays to such home care (the bulk of its outlays go to hospitals for such care). In addition to the sheer inadequacy of this subsidy, the unwillingness or inability of states to pay more to such workers has resulted in the entire field of home health care (for children as well as adults) paying dismally low wages. This has been exacerbated by the COVID-19 pandemic, as hospitals (who can pay more) have essentially bought back the vast majority of nurses capable of administering such care.

As explained by Alcorn, the extraordinary pay gap between home health care workers and hospital workers who provide the same type of care is a big reason for the critical shortage.

A nurse caring for a medically fragile child at home has the same responsibilities he or she would in a hospital but no medical backup in case of emergency. It’s a high-wire act, and experts say that prevailing wages don’t reflect its difficulty.

Federal guidelines permit state Medicaid programs to cover in-home care for eligible children regardless of their families’ income, since the price of round-the-clock nursing would bankrupt almost anyone. But states generally pay home care nurses at much lower rates than they would for equivalent care in a hospital or other medical center.

The Ann & Richard Lurie Children’s Hospital of Chicago conducted a survey to assess parents’ home health care needs between June and October of last year, as the full force of the COVID-19 pandemic took shape. At that time, over the half of the surveyed parents of chronically disabled, “medically fragile” children had lost home care services. Many of these children had parents desperately attempting to make up the deficiency themselves, tending to children on ventilators, with tracheostomy tubes, and attached to oxygen monitors.

The Maskin-Mead family, from Queens, New York, is profiled in Alcorn’s article. The couple’s seven-year-old son, Henry, was born with spinal muscular atrophy, a neuromuscular disorder that results in the loss of motor neurons and progressive muscle deterioration. He needs monitoring and care on essentially a 24-hour basis. As the pandemic accelerated, the family lost two of their home health nurses, both of whom needed to quarantine. After a brief respite, in which they scrambled to find adequate care, Henry’s parents found themselves with no recourse as agencies ran out of people willing or able to provide this type of care for their son. Both mom and dad were soon forced to trade off staying up during the entire night, monitoring their son. Maskin would then begin his own workweek at 7 AM, at which time he would hand off the duty to his wife. Due to the lack of available care, this routine often stretched into 36-hour sessions of nonstop caring for their son.

The problem has been worse for single parents of such children. A 40-year-old divorced mother from New Jersey named Sarin Morris, also profiled in The Times’ article, has been caring for her neurologically impaired son, 4, throughout the pandemic. Her son, who is on a ventilator, has been prescribed 20 hours of care per day, but nurses are seldom available to do it. Morris has no family available in her area to assist her; on the rare occasions she can find a nurse, she goes to work, earning $13 an hour at Home Depot where she has had to live in constant fear of contracting COVID-19 and bringing it home to her vulnerable son. She has even considered entering nursing school, with a view toward earning some semblance of a living while caring for him, but she simply cannot afford the tuition.

Experts interviewed by Alcorn agree that part of the solution to this problem must involve raising Medicaid and insurance reimbursement rates for home health care providers, to narrow the gap between much higher hospital reimbursement rates, and those to such caregivers who choose to work at peoples’ homes. The COVID-19 relief legislation that passed in March (with zero Republican support) provided a temporary increase in federal funding for state Medicaid home care programs, but that additional funding will expire after one year. Accordingly, President Biden’s infrastructure bill—the same one currently being held up at the insistence of Democratic senators like Manchin—provides nearly $400 billion in funding over 10 years for this exact purpose.

And given the additional, massive expected needs for home health care as the Baby Boomer generation enters its twilight years, researchers interviewed by Alcorn concede even that will not be enough. But further legislation pending in Congress to address this critical shortfall in the nation’s safety net has virtually no chance of passing in the Senate. In the face of Republican opposition, the filibuster remains a tool for Republicans to thwart most Democratic legislation.

So the short-term solution is (for now) the president’s infrastructure bill, currently being stymied by a Republican Senate, whose members for the most part have no conception of what it is like to care for a disabled child. The Republican Party had from the outset decided to make right-wing, Trump-supporting West Virginia Sen. Shelley-Moore Capito their face in these negotiations, and every bad-faith offer she put forth was designed with one result in mind—to fulfill Sen. Minority Leader Mitch McConnell’s expressed goal of stopping the Biden administration “100%.” Now that President Biden has all but declared those talks dead, another group of so-called moderate Republicans has entered the discussion. But they too, in all likelihood, will continue to press their farcical objections to this vital legislation in the the name of bipartisanship. It is difficult to imagine many (or any) Republican senators defying McConnell and voting for a bill that Democrats will certainly have no option to pass but through the reconciliation process to avoid a Republican filibuster.

The end result, then, appears to be little more than a foregone conclusion, no matter which Republicans are involved. The longer Manchin keeps holding up and forcing alterations to the bill with his bipartisan shtick, the longer these desperate families with profoundly disabled children will have to wait for relief. Or perhaps they won’t get any relief at all.

But maybe Manchin can live with that on his conscience. There’s certainly no doubt that his Republican friends can.

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