Impact of COVID-19 on children with disabilities, caregivers and healthcare providers
Older adults and people with underlying health conditions have been severely impacted by the coronavirus disease 2019 (COVID-19) pandemic. However, researchers are now drawing attention to children with disabilities and their struggling families who have also been disproportionately impacted by COVID-19.
Family caregivers were stretched to the limit because they could not get the therapies, medical supplies, and nursing care that their children needed because the pandemic healthcare providers paused or canceled these vital support services, according to a special issue of Journal of Pediatric Rehabilitation Medicine published in January.
What’s more, children with disabilities who are infected with COVID-19 are at a greater risk of having complications from the disease. For instance, the Mayo Clinic’s Dr. Joline E. Brandenburg said children with pre-existing respiratory disorders, such as cerebral palsy, could experience severe respiratory symptoms. Brandenburg advises families of children with CP to practice CDC guidelines of physical distancing, good hand hygiene, and minimizing trips to public places to reduce the risk of contracting COVID-19.
Not only did the pandemic shine a spotlight on vulnerabilities that exist for children with special needs, but it also brought the existing marginalization of these families to the forefront, according to the comprehensive report. For example, families of children with disabilities are more likely to be poor, of a minority race, and face structural racism and discrimination against people with disabilities. Families also lack access to quality healthcare.
On top of that, families were also more likely to have higher rates of work loss and financially burdened with healthcare costs. According to the report, the phrase, “we are all in this together,” should be modified to, “We are all weathering the storm together, but we are not all in the same boat.”
Report: Families Struggled With Little Support During the Pandemic
As the coronavirus began to spread across the country, more states started issuing shelter-in-place orders that restricted the public’s movements to reduce the spread of COVID-19.
Because of the restrictions, children with disabilities faced many of the same problems older adults faced, such as an inability to have in-person visits with healthcare providers or go to daycare programs that provide family caregivers with a needed break. With routine activities and in-home health care support grounded by COVID-19, parents were left scrambling for help in taking care of their children.
One mother interviewed for the report mentioned that her child has several health conditions, including cerebral palsy, spastic quadriplegia, and severe scoliosis, that require round-the-clock, hands-on care.
Prior to COVID-19, the family had one full-time licensed nurse who visited four days a week and another full-time licensed nurse who visited four nights a week. Besides the nurses, immediate and extended family members filled in all other shifts, the mother said. A third nurse, who had been trained to work day and night shifts, was to start in March 2020.
The full-time nurses, however, expressed concerns about the third nurse who worked part-time at a long-term care facility and at a major hospital that had just set up a COVID-19 unit. So, the mother said at the last minute, she asked the third nurse to delay coming, and paid the individual a bonus, and promised to hold the job open until after the pandemic.
After a shelter-in-place order took effect, the mother said she asked everyone, except immediate family members, not to come over to help out. As a result, the mother spent 12 to 14 hours with her child while her husband did about two-night shifts a week.
Without any direction or practical support from the home care agency on how families could stay safe, the mother said her family wrote their own COVID-19 support plan.
Families of children with disabilities also had to scramble to find additional support when schools, child care centers, and other community resources shut down over COVID-19 concerns. On top of that, families whose children lived in a skilled nursing facility or a community-based group home worried about the risk of the coronavirus spreading throughout the facility. To make matters worse, parents could not visit their children due to facilities limiting visitors, just as senior living facilities banned all non-essential visitors and workers from their residences.
According to the report, families were left with tough decisions of either keeping their children in the facility or moving them back home without the support that they would need to take care of their children.
Report: Children With Disabilities Should Be Included in Crisis Planning
While these families have high rates of unmet needs, researchers view this challenge as an opportunity for improving services to children with disabilities. For instance, families can benefit from telehealth services, which older adults and other patients found valuable during the pandemic. However, access to telehealth services are out of reach for families who do not have what’s needed to access the services, such as a laptop or smartphone with reliable Internet service.
According to the report’s guest editors, Dr. Matthew J. McLaughlin and Dr. Christian J. Vercler, children with disabilities who frequently need different types of care should be the focus of evaluation and intervention to reduce the risk of the negative consequences of COVID-19 and the resulting lockdown restrictions.
McLaughlin is a medical team member at Children’s Mercy Hospital in Kansas City, MO, and Vercler is a pediatric plastic surgeon at the University of Michigan’s C.S. Mott Children’s Hospital in Ann Arbor, MI.
McLaughlin and Vercler further wrote, “The need for more ethical and conscious decisions in the treatment of persons from disabled populations should be recognized and included in future crisis planning.”