Children with disabilities have struggled to receive necessary care, even more than the general public during this difficult time. They have dealt with inaccessibility to needed healthcare and therapy. They’ve also dealt with emotional and mental stress. Understanding the toll of the pandemic lockdown on these children and their families is key, as well as looking for beneficial solutions.
Children With Disabilities Can Be High-Risk COVID-19 Patients
Questions about the reach and enormity of the COVID-19 pandemic emerged as quickly as the virus itself. Experts looked at the impact of the virus on various facets of society. Patients in pediatric rehabilitation were initially overlooked. By examining personal experiences with statistical data, experts exposed the risks these children face. “Some children have significant functional and motor impairments that would make their respiratory system increasingly susceptible to an infection in this area. (They) may not be able to cough with the same force, or may not have the same lung health as individuals without cerebral palsy,“ says Matthew McLaughlin, MD, MS, assistant professor of pediatrics at Children’s Mercy-Kansas City. According to the CDC, “Most children with COVID-19 have mild symptoms or have no symptoms at all.” But it can become a case of life or death for some children with disabilities. A press release from the publisher of the Journal of Pediatric Rehabilitation Medicine shared information on COVID-19 and the pandemic’s impact on children with disabilities. It notes: “Children with disabilities like cerebral palsy (CP) are more vulnerable and are at higher risk for respiratory complications. Some can present with multisystem inflammatory syndrome (MIS-C) and need supportive care.”
Reduced Access to Therapy and Treatment
The impact of the COVID-19 pandemic extends beyond the children with increased susceptibility to the virus. Many rehabilitation centers shut down along with the rest of the world, leaving them without a way to get critical therapy. “Depending on their mobility, they’re at risk for hip subluxation or the hip coming out of the socket,” explains Larissa Pavone, MD, pediatric physiatrist at Marianjoy Rehabilitation Hospital, a part of Northwestern Medicine. Dr. Pavone notes in addition to the increased physical risks, children also had to deal with decreasing endurance, tighter muscles, and potential weight gain. The issues could present even more difficulties for children as they return to their therapeutic routine and physical mobility. “I believe we are just now starting to see some of the long-term physical effects of this, such as increased muscle tone/spasticity, pain, and poorly fitting orthotics/braces," Dr. McLaughlin notes. Procedures that could improve quality of life were also put on hold. “The delay of non-emergent surgeries caused some children with cerebral palsy to suffer while waiting for hospitals to be opened again to perform these operations," Dr. McLaughlin states. Many patients faced delays when trying to get wheelchairs, bathing aids, and other therapeutic equipment. Some insurance companies wanted patients to meet face-to-face with providers before approving equipment; the pandemic lockdown initially halted those meetings.
The Psychological Toll
Children with disabilities often feel ostracized by their peers. The pandemic multiplied that isolation. Without warning, children who found comfort in routine with their therapists and doctors were relegated to not having contact in person. “When those are taken away in person, it’s both the social aspect, seeing someone, and having that connection," says Rachael Benjamin, LCSW and director of Tribeca Maternity. “We’ve underappreciated how vital those relationships were to the kids’ emotional health.” Caregivers have also been impacted. “Parents have had to do more of the therapy exercises with their children, while also trying to do distance learning, manage their household, and for many, work from home," explains Joline E. Brandenburg, MD, pediatric rehabilitation specialist at Mayo Clinic Children’s Center. Parents also had to grapple with the very real possibility of their child becoming sick. Dr. Pavone shares that some of her patients would not leave their homes for an entire year because it didn’t seem safe.
Telehealth to the Rescue
Telehealth has allowed patients to continue to receive healthcare while maintaining an appropriate distance. It’s a practice that has allowed a measure of comfort for children to work own home environment. “With telehealth, we were able to keep the patients who may have been most at risk away from the hospital during a time when it was unsafe for them to be in our outpatient clinics until more was known about the virus itself,” Dr. Brandenburg states. With the inability of face-to-face contact, telehealth has been viewed as a life-saving measure. “I would say that’s a real big positive that’s come out of this pandemic if you’re going to look at a silver lining,” Dr. Pavone says. “It greatly improved the ease of getting access. It’s something I hope we continue to do.”
What Else Can We Do?
Thinking outside of the box is key when working to balance health concerns and mental wellness for a child with disabilities. It’s also important to provide a sense of stability. A schedule can help provide that sense of consistency. Schools and mental health providers may also provide helpful resources. It’s just as important for kids to still enjoy themselves, and have a positive way to relieve stress. “If at all possible, setting aside time where parents can spend 1:1 time just doing something fun with their child—reading a book, playing their child’s favorite game, watching their child’s favorite videos/movies with them, going outside, cooking/baking, or just talking with their child can have a big positive impact on their child’s mental and emotional health,” Dr. Brandenburg advises.
