Pandemic Puts Children With Disabilities at Significant Risk

Dennis Z. Kuo, MD, associate professor of pediatrics and chief of the Division of General Pediatrics, specializes in children with special health needs and says that as COVID-19 spreads throughout the United States, families of children with special needs are already experiencing the consequences.

“These families are really concerned,” Kuo says. “What I’m hearing from them is that as we shut down the country and close schools, kids may lose access to therapies and counseling, which they would normally get through school.”

Kuo is medical director of primary care services at Oishei Children’s Hospital and a physician with UBMD Pediatrics.

“We’re finding, for example, that some specialized feeding formulas that are needed by children who get fed through feeding tubes may be difficult to find,” he says. “We are having to switch their formulas. We were seeing this even before the country started shutting down.”

Children who rely on feeding tubes cannot safely swallow food either due to a congenital condition, blockage in the esophagus or a developmental delay.

There are also reports that inhalers are increasingly difficult to obtain.

Every community has a significant number of children who live at home, Kuo says, in an environment that almost mimics an intensive care unit, thanks to a wealth of sophisticated technologies. These may include feeding tubes, home ventilators and tracheostomy tubes.

One of the most ominous consequences of this pandemic, he says, will be that many trained, round-the-clock caregivers will get sick.

“Many of these children rely on an array of home nurses, but what happens when these nurses get sick with the virus, which many of them will?” Kuo says.

Kuo describes a cascade of difficulties stemming from the shutdown of schools and the restriction of on-site visits at many pediatric clinics, as well as the fact that the income families depend on may be in jeopardy with so many people laid off.

Kuo and his colleagues who treat children with disabilities emphasize that families should make sure they have medications and supplies on hand; they also need to find pharmacies that deliver.

“Most important, they need to make plans for alternate caregivers,” Kuo says, “because many caregivers will probably get sick at some point.”

Many clinics are starting to see children only for non-routine reasons. If children do need to go into a clinic, Kuo says, parents should plan ahead.

“They can work through the physician’s office with case managers to discuss needs and services,” he notes, adding that physician practices need to do the outreach to patients and families.

“If the child needs to go to the clinic, parents need to plan how that visit is going to go,” Kuo says. “It’s about planning the entire visit, from talking with front desk staff who schedule the appointment, to the nurse who does triage, to the person who rooms the patient.”

“I don’t want that child sitting in the waiting room too long. Get them into an exam room, and if the child is sick, they should be isolated. We are working really hard to not expose a child to any illness.”

Kuo notes that the fact many pediatric clinics are now offering telemedicine — the practice of caring for patients remotely — is a positive development that has come out of the crisis.

“Not every child has to be seen in person,” he says. “As we go forward, we will see fewer kids in clinic, and that’s appropriate, doing telemedicine and being selective.”