COVID Has Major Costs for Medically Fragile Kids—But There May Be an Inexpensive Solution

The COVID-19 pandemic has created a drop in the availability of trained nursing professionals, which has had a huge impact on the families of medically fragile children (MFC). These are children with all manner of chronic conditions, from the cardiovascular to the neurological to the autoimmune. No matter the specifics of an individual child's condition, MFC families are likely to require in-home health aides to come to their homes and perform tasks that would otherwise require a trip to a medical facility. Because of the frequent medical care needed by medically fragile children, these visits can be required weekly, and sometimes even daily, depending on the child's needs—and those costs add up.

With a lack of trained caregivers available, these families are having to make multiple trips to the hospital in order to receive services, or are having to keep their children admitted in hospital settings long after they're able to be discharged, while they wait for in-home health care to become available. This cycle causes physical and emotional strain as well as ever-piling hospital bills in the exact types of families who, even pre-pandemic, go bankrupt simply trying to keep up with the payments of caring for a special needs child.

Then, there's the fact that each time a MFC has to enter back into the health system, their risk of contracting COVID-19 increases. 

When MFC are admitted to the hospital, their ability to return home is often dependent upon in-home care being available, according to Dr. Kurt Sobush, a board-certified pediatrician. "In-home nurses are often in high demand, especially those with pediatric experience," he tells Parents, adding that of that pool, there are even fewer nurses available to work on the transition from hospital to home.

Once in-home care options have been identified, parents and caregivers will need to begin the sometimes months-long process of waiting for them to be trained on the child's diagnosis and equipment. Then there are the personal accommodations that need to be made as parents and caregivers work to find a staffing option that works with their personalities and schedules. "Parents often need to assess their comfort level with three to four different nurses that might work full- or part-time to cover the necessary shifts for their child," Sobush explains, adding that among other issues and delays, the whole process can result in missed work days for family caregivers. 

Those who care for MFC are already at a financial disadvantage. The average American family spends $284,570 on basic care for a child; those with MFC can easily spend triple that when you factor in nursing and hospital care bills, special equipment such as feeding tubes or wheelchairs, and much more. Which means the additional financial hits—including the parent's missed work time as well as the potential wage reductions and/or unemployment that often result from frequent and unexpected absences from work due to a child's health needs—can compound the troubles facing these families. 

As of March 2021, The Bureau of Labor Statistics estimated the unemployment rate to be at six percent, and according to numbers released by the Center for American Progress, work absences due to child care problems have increased dramatically over the past year, reaching an all-time high in October. According to their figures, over 80,000 people were required to miss at least one day of work due to the pandemic, resulting in a 144 percent increase in child care-related absences over the same period in 2019. So if the typical American family is already struggling immensely to juggle work and childcare mid-pandemic, how can those caring for medically fragile children—and experiencing constant missed work days on top of hospital bills and in-home care costs—possibly keep up?

COVID has exacerbated the struggles families with MFC were already facing by further limiting the places parents can be, and further reducing the availability of properly trained professionals. "Furthermore, children with medical complexity are both at risk of COVID-related complications in addition to posing an increased risk of transmission to their care providers," explains Sobush. "This includes hospital settings and homes where in-home nursing is required." And many families have been justifiably fearful of medical settings such as clinics or emergency rooms due to COVID, delaying (and sometimes canceling altogether) routine and nonemergency care. 

Currently, Sobush says they're preparing families to handle the transition home from medical facilities with the thought that in-home nurses may not be available for a given shift due to weather, illness, and so on. "COVID simply amplified that reality, unfortunately," he says. "In that sense, additional training provided to families would empower them in these circumstances beyond those honorable yet difficult tasks they willingly take on already to care for their child." 

Even before COVID, some families, like Gary Turner's, waited on in-home care for years. The Missouri father spent six years visiting his daughter Courtney in the hospital due to a nursing shortage that made providing home care impossible. Turner explains that his daughter's case is complex. "She is on a trach. She can't use the bathroom. She's a tube feeder. She can't walk," he says of his daughter who is also quadriplegic, on a ventilator, and prone to wounds.

During the six years Courtney was in the hospital, Turner lost his job because he would frequently be called to the hospital when they were afraid his daughter wasn't going to make it. "I had a really great job," he tells Parents, adding that they did try to work with him and his family needs in the beginning. 

Eventually, Courtney stabilized, and Turner was able to bring her home. But, "in order for her to come home from the hospital, I had to take courses to help take care of Courtney," he explains. 

Courtney's nurse, Joyce Phillips, LPN (TSHC) said that when she first met the family as part of their care team, she was working with Turner and another nurse. But, shortly after Joyce started helping the family, the other nurse left. "I could tell she was burned out," Joyce remembers. "She ended up leaving…I took on everything alone." Phillips says another nurse came in for a while, but she didn't remain on the case for long. "It was difficult to keep someone here who was experienced and could take care of [Courtney]," she explains. "She has idiosyncrasies that take time to learn."  

And of course, in order for families to hire multiple nurses with the experience and qualifications necessary to care for a medically fragile child, it costs even money those families don't necessarily have on hand to spend.

There's a group in Colorado called Team Select Home Care that is working to solve this problem, and to help prevent parents from going through what Turner went through: by training parents and other caregivers as Certified Nursing Assistants (CNA) and paying them to be caregivers for their family members. Essentially, they're now earning a salary in order to provide necessary care that they were providing for free before. Team Select pays for the families to get trained as CNAs, and then bills Medicaid in order to pay them their salary—for caring for their own loved ones. 

Getting certified is relatively easy, Fred Johnson, Founding Advisor for The Unforgotten Families, tells Parents. "If assessment determines a patient qualifies, Team Select gets a parent or family member wanting to be CNA-enrolled in one of the many schools we partner with," he says. Because each state varies regarding the amount of clinical and classroom hours needed to obtain a license, the length of time spent training will also vary. In Colorado, Johnson says you can expect it to take 80 hours. 

Of course, it's not as easy as signing up for a few classes. Johnson says there can be between 10 days and three months of class time, with a state test to follow within 90 days of completion. "After passing [the] state test, the family CNA member will go through Team Select orientation (half day in office/virtual, currently)." Once that's done, the family member can now officially begin administering daily paid care. Every 60 days, a nurse case manager will do a recertification visit to ensure continuity of care and advise of any changes needed. 

Colorado mom Patricia Jackson became certified as a CNA with Team Select to care for her son, Miquel, who has a complex medical history which includes autism. "Going through the process of becoming a CNA was easier than one might think," she says, adding that she's long been thankful for her CNA certification—but especially over the past 12 months.

"My son has not gone back to school in person, and every activity is taking place at home: remote learning, virtual therapies, appointments and meetings," she says. "I do not want to imagine what life would have been like if I wasn't able to stay home with him." 

The most common challenge preventing this cost-effective and often life-saving solution from becoming commonplace? A majority of states have regulations that prohibit parents from being paid to provide care to their own children. "These regulations," Johnson explains, "were often implemented decades ago for various different reasons, completely unrelated to this specific program for medically fragile children."

He adds that he doesn't believe the primary reason so few states offer this type of program is due to a lack of need, but rather the massive undertaking that a legal change of this magnitude would require; Johnson cites various legislative steps, requirements for changes to the Board of Nursing delegation rules, and the fact that many state's Medicaid agencies are still drowning in COVID challenges. 

Additionally, a lack of awareness of these programs could present its own set of roadblocks. But there is no time like the present—after a pandemic year in which we truly learned the importance of taking care of the most vulnerable among us—for legislators to realize that bankrupting families with ongoing medical care costs (or worse, forcing them to forgo necessary or even lifesaving care simply because they cannot afford it) is not the answer.