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Medically fragile kids struggle with loss of home health care amid the pandemic

Staff shortages and fear of exposure to COVID-19 can make it hard for families of medically fragile children to manage care at home.
Collage of photos of kids with disabilities
TODAY Illustration / Getty Images / Courtersy Chrystal Crider / Jessica Wolff / Amy Rhoades / Lee Ann Quinn / Noreen Vongrej

Before the pandemic, Chrystal Crider's 7-year-old son Bryan received 16 hours of daily skilled nursing coverage. While there might be an occasional call-out or interruption in services, for the most part Bryan received that care, which was necessary to attend to his extreme medical needs.

COVID-19 changed all of that. Much of Bryan's care has fallen on Crider and her son's father. Since they live separately, each is responsible for his medical care individually when Bryan's with them. Crider said that recently, she herself was unable to seek medical care for an emergency root canal because nurses were not available.

"I was walking around with an infected tooth in my mouth for three weeks," Crider told TODAY Health. One day, she finally got three hours of nursing coverage, but the appointment her dentist offered would have gone too long, and since Bryan can't be left alone, she had to cancel it and come back the following day.

Chrystal Crider with her son, Bryan. Courtesy Chrystal Crider

"I literally walked out of the office crying and praying that I'd make it to the next day," Crider explained. "The dentist even said 'I don't see how you were able to make it as long as you did,' and I just said 'By the grace of God, because I really didn't have any other choice.'"

Crider is just one of millions of parents of medically fragile children who relies on home health care and skilled nursing to keep their children healthy at home. Many medically fragile children are at extreme risk for coronavirus complications, so keeping them out of the hospital is a priority for their parents, but circumstances during the pandemic have resulted in some families choosing to go without nurses or making do with shortages in care.

Fear of coronavirus exposure leads to changes in care

Jessica Wolff's 2-year-old daughter Lily is entitled to 16 hours of in-home skilled nursing, and before the pandemic, Wolff and her husband relied on their night nurses to monitor Lily's ventilator and tracheotomy tube at night while they slept. However, in March, they realized that having nurses in their home put Lily at too much risk.

"The first positive case here appeared, so we made a decision," said Wolff, who lives in Illinois. Lily's nurses at home had also been the nurses in her neonatal intensive care unit. "The second there was a positive case, we didn't feel comfortable having nurses, which really sucked, because not only were they nurses but they were also an extension of our family, you know? They saved our kid's life, so it was really difficult for us to lose them."

Lily Wolff requires round the clock care that her parents are currently performing. Courtesy Jessica Wolff

Since March, Wolff and her husband have managed Lily's round-the-clock care themselves.

"We are still splitting nights," Wolff said. "We trade off so we each usually get about four and a half to five hours of sleep at night ... We have learned to just kind of operate on a different level now. Our bodies are used to five hours of sleep, as much as we hate it."

Not every family can make that choice.

Norren Vongrej, whose 13-year-old son Dylan has a neurological brain disease called Canavan disease that affects him both physically and developmentally, said that there were two circumstances where her son's nurses were exposed to the virus, putting the family at risk. Normally, Dylan has skilled nursing care for 16 hours a day.

"Dylan is at a high risk of infection; him contracting COVID would be very difficult for him. It would probably require a hospital stay, and he's respiratory compromised so it could be life-threatening for him," Vongrej said. "We were biting our nails for two weeks hoping that we all stayed healthy."

Dylan Vongrej, 13, would be extremely susceptible to complications if he contracted coronavirus. Courtesy Noreen Vongrej

Vongrej said that when she tried to limit the amount of specialized therapists that her son saw, she saw his condition worsen in weeks.

"Once the pandemic hit, everything stopped," Vongrej said. "He was getting physical and occupational therapy (at home), which was really important. They are really essential in keeping Dylan's body moving. We had to stop that and do it virtually, but doing therapy virtually for someone who is non-ambulatory doesn't really work. Dylan became very spastic, very rigid, and he began to experience pain."

Amy Rhoades, whose 1-year-old son Liam uses a ventilator and tracheotomy tube to breathe, said that she has had to stop using one nurse who refused to wear a mask or other face coverings. Liam came home from the NICU at the beginning of the coronavirus pandemic and is extremely susceptible to respiratory disease. When he contracted a case of rhinovirus earlier in life, he had to be life-flighted to the nearest hospital, which is more than two hours away.

"It's very scary," said Rhoades. "I cannot have my child that just got out of the hospital not too long ago go back into the hospital. Liam was a twin ... His twin passed away when he was three days old. I always have that fear in the back of my mind, that any little thing could put him at risk."

Amy Rhoades said that if her son contracted coronavirus, he would likely need to be airlifted to the nearest hospital. Courtesy Amy Rhoades

Families struggle with inconsistency

While some families, like the Wolffs, have made the decision to go without care, others are unable to do so because of their child's severe need and their inability to provide comparable care. Crider, Vongrej and Rhoades all said that they considered not using nurses and other medical staff, but would have been overwhelmed trying to manage everything themselves.

However, if a nurse was exposed to the virus or otherwise unable to come to the house, the parents were usually unable to get a replacement and instead had to manage care themselves.

"Before, about 75% of the time we would be restaffed in some form," said Lee Ann Quinn, whose 22-year-old son Zack has Duchenne muscular dystrophy, a progressive neuromuscular disease, and uses a ventilator. "I would say now that it's less than 10 or 5 percent of the time. ... It's always been a little bit tough, but it's worse than we've ever seen it."

The Quinn family with 22-year-old Zack. Courtesy Lee Ann Quinn

Vongrej said that it's much harder to go without coverage now than it was before the pandemic: In instances where a nurse is exposed to the coronavirus, they aren't able to come back for at least two weeks, so her son may go a substantial amount of time without skilled nursing.

"Medically complex parent caregiving is 24/7," Vongrej said. "Not having the help of a nurse or home health aid for a week or two weeks is a big deal. It means you're up, 24 hours a day, you're providing all of their medical care."

Even if substitute nurses are available, they may not be familiar with a family's needs, so it falls on parents to be able to explain their child's unique medical situation.

"We just don't have consistent nursing, so I have to step up and make sure that I'm the consistent person," said Crider. "I take over doing some of the medication and things that I know (nurses) should be doing ... It's easier to just do it myself."

Parents lobby for change

Most of the families interviewed for this story have been lobbying in support of local legislation to increase pay rates for home health care nurses. Rates that can be paid for home health care are frequently set by state agencies or insurance companies, so parents like Crider are pushing for an increase in those rates.

"I'm just hoping and praying that we will see some changes," Crider said. "Hopefully things get better down the road, because right now there's so few nurses that we're just working with what we have."

According to the Bureau of Labor Statistics, median annual pay for aides in the home health care industry is about $25,280, which comes out to about $12.15 per hour. Home health nurses may make more, but it can vary based on area and experience.

Quinn said that she hopes that the coronavirus pandemic will lead to more people realizing the need to "invest in care." The Bureau of Labor Statistics estimates that the overall employment of home health aides and personal care is predicted to grow 34 percent by 2029.

"COVID is not going to disappear in two weeks," Quinn said. "As a country and as a state, the more we're able to provide proper home care for patients like (my son) and other children and adults, the more we're going to be able to keep those people out of hospitals and safe."