Editor's note: For the latest news on COVID-19, visit https://www.aappublications.org/news/2020/01/28/coronavirus.
Being out of school due to the COVID-19 pandemic affects all children, but children and youths with special health care needs (CYSHCN) are having an especially challenging time.
CYSHCN include those with medical problems; physical, learning and intellectual disabilities; speech delay; autism; and behavioral and mental health issues. These children often depend on school for a daily routine and social interaction. To thrive in school, they may require academic support, small classroom setting, school nursing, and physical, occupational, speech and/or mental health/behavioral therapies.
School systems have pivoted rapidly to remote learning, a system that most teachers and therapists had not used or been trained on before the pandemic. Barriers to remote learning include limited school system resources; lack of internet access for families, teachers and therapists; a dearth of laptops/tablets; issues with mail delivery; and language barriers.
The Individuals with Disabilities Education Act mandates that all children, including CYSHCN, receive free appropriate public education in the least restrictive environment. The services a child receives in school are determined by an Individual Education Program (IEP). The IEP is developed based on the parent’s/child’s goals after an evaluation of intellectual and academic levels and speech, fine motor, gross motor and emotional abilities. Based on this evaluation, class placement, therapies, transportation and (by age 16) transition planning are recommended.
Other supports like medication, nursing services, testing accommodations and mobility assistance in school may be provided under Section 504 of the Rehabilitation Act of 1975 rather than an IEP.
Despite schools’ best efforts, it can be challenging to provide the services detailed in a child’s IEP during the pandemic. When services are not being provided, federal law requires compensatory services. According to a recent U.S. Department of Education fact sheet (https://bit.ly/3c6YSDN), the IEP team determines compensatory services for each student. The pediatrician can support families through this process by encouraging them to identify their child’s abilities and strengths before the pandemic and when they return to school.
There also are concerns about whether remote learning will allow children to make sufficient progress in academic, speech, emotional and physical abilities or whether their levels will stagnate or regress. For example, will those with physical disabilities who depend on therapies maintain muscle tone and function and avoid contractures?
Pediatricians are in an excellent position to help families advocate in this difficult time. Many pediatricians are reaching out via telehealth to determine their patients’ health and medication needs. During the visit, pediatricians can ask whether remote learning is occurring, what is working and what is not. Pediatricians can review the IEP to help families understand the services their child should receive. A recent AAP clinical report provides guidance on how to read an IEP (https://bit.ly/2M5oTsw).
In addition, pediatricians should talk with parents about the roles they are being asked to play for which they have no training. Parents/guardians have become part teacher and part therapist while trying to meet the needs of siblings and their jobs. They also may be dealing with illness, their children’s anxiety symptoms, loss of work and the stress of procuring basic household needs safely. Pediatricians can encourage parents to set realistic expectations for themselves and remind them that they are doing enough.
Pediatricians also can help families connect with services children typically get in school but are not receiving, such as physical, occupational or speech therapy, as well as mental health services needed due to social isolation and anxiety.
Depending on parent’s/patient’s wants and goals, summer therapies (most likely virtual) should be encouraged if available. When in-person learning recommences, the school should reassess the child’s status and abilities in partnership with the child and parents. A plan for potential catchup can be developed based on the child’s IEP and the family’s goals, according to the AAP (https://bit.ly/2B8xXL8). Pediatricians can advise and empower families in this process and advocate for their patients’ needs.
To further support families, pediatricians can encourage connections with Parent Training and Information Centers, which assist families in navigating special education systems in their communities. To find parent centers in each state, visit https://www.parentcenterhub.org/find-your-center.
Dr. Davidson is a member of the AAP Council on Children with Disabilities Executive Committee, and Dr. Kuo is chair of the executive committee.