The COVID-19 pandemic has disproportionately impacted children with disabilities (CWD) in multiple ways.
CWD are more likely to be hospitalized (https://bit.ly/3PKUVc2) and not just with COVID. Other infectious diseases have spread over the past year, resulting in spikes in hospitalizations, often off-cycle from seasonal norms.
The pandemic also disrupted many services that CWD depend on for health, growth, education and wellness. School closures, staffing shortages and family concern of contracting COVID-19 all contributed to disruptions in accessing services. Examples include a child recently diagnosed with autism and severe behavior problems waiting many months to receive appropriate therapies and a child with a new tracheostomy tube whose hospital discharge was delayed due to the unavailability of home care services related to staffing shortages.
While many communities have returned to pre-pandemic routines, this is not an option for many CWD and their families. As a result, numerous children have not made progress or have regressed, and shortages in home and community-based services are making it difficult to catch up.
All pediatricians see CWD in their practices. The following are suggestions on how to help.
Educate families on disease prevention
Much of the discourse regarding infectious disease pertains to people’s personal risks of contracting SARS-CoV-2. However, other viruses such as rhinovirus, respiratory syncytial virus and influenza have made a resurgence and are not following predictable seasonal patterns.
While transmission of SARS-CoV-2 is primarily airborne, many others are spread through fomites. Reminding families to practice hand hygiene, mask while ill and use other preventive techniques, particularly around children with disabilities, may decrease transmission of infections to CWD.
Ensure patients are up to date on immunizations
From routine childhood vaccinations to the COVID-19 vaccine, immunization goes a long way in preventing severe illness. Immunization of the people around the child with a disability also will help protect the child.
As vaccine hesitancy is increasing, it is even more important that children are protected against preventable diseases.
The AAP’s immunization website provides resources, including how to talk to families who are vaccine-hesitant (https://www.aap.org/en/patient-care/immunizations/).
Help families advocate for educational accommodations
In transitioning between remote and in-person learning, individualized education plans (IEPs) may not have been updated, resulting in inadequate accommodations.
Asking families if IEPs have been updated and reviewing IEPs can help start conversations about educational needs and bring awareness to school difficulties (see AAP News article “What to do when school closures interrupt services outlined in IEPs”).
Communicating with schools also can have a positive effect (see below).
Prepare letter templates
If a social or educational concern comes up during a visit, offering to make a phone call or send a letter of support can help a family obtain living accommodations, school services and community resources.
Pediatricians are uniquely suited to understand the risks when a child’s physical and emotional needs are not met and are poised to communicate this to others who may not have this understanding. Examples include sending a letter to the school of a child with hyperacusis who becomes agitated with loud noise or a letter to a landlord advocating for wheelchair access for a child with severe cerebral palsy.
Seek advice from nonphysician colleagues
When grappling with how best to assist a child with medical complexity, it can be helpful to ask a colleague who is a case manager, social worker, psychologist, school nurse, musician or educator to see if they have any ideas.
Many areas have family-to-family health information centers (https://www.familyvoices.org) and parent training and information centers (https://www.parentcenterhub.org/find-your-center/), which can be valuable resources.
The past few years have been difficult for everyone but perhaps none more so than families of CWD. While pediatricians may not be able to fix all the problems families face, they can play a significant role in improving families’ lives and protecting children’s health with compassion, initiative and advocacy.
Dr. Pillai is the liaison from the AAP Section on Pediatric Trainees to the Council on Children with Disabilities. Dr. Kuo is the immediate past chairperson of the Council on Children with Disabilities.
- AAP immunization website
- AAP News article “What to do when school closures interrupt services outlined in IEPs,”
- Information on family-to-family health information centers
- Parent training and information centers by state
- AAP clinical report The Individuals With Disabilities Education Act (IDEA) for Children With Special Educational Needs