By: Dennis Z. Kuo, MD, MHS, FAAP & Cara Coleman, JD, MPH
Kids with special health care needs should not get left behind in school as the COVID-19 pandemic continues. In fact, even more children and teens may now require extra support due to long-term effects caused by COVID infections.
Children and youth with special health care needs have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions, disabilities and medically complex conditions. They require health and other services beyond the needs of children generally.
Now, as communities relax steps such as masking to protect against COVID, you may wonder how best to keep your child or teen with special health care needs safe in school or child care. Here's what to know as families and children with special health care needs make up for lost time from delays, cancellations and changes to daily routines and support systems.
Keep using layers of protection & creative, flexible ways to safely meet needs
When the community level of COVID is medium or high, more layers of protection should be used, including:
Stay up to date on COVID vaccines and boosters. This includes getting all primary series doses of the vaccine and an updated booster dose. Individuals with certain medical conditions may need additional doses. Everyone eligible should get the vaccine and booster: family members, household contacts, health care workers and education workers who have contact with kids with special health care needs.
Catch up on recommended immunizations. Children and youth with special health care needs also need to stay up to date on all recommended vaccines. The flu shot for everyone age 6 months and older is particularly important during the pandemic to protect kids who are at an increased risk for influenza complications. It is important to recognize the need to stop the spread of all respiratory illnesses.
Use face masks in areas with medium and high community levels and any time spread is more likely—when in close contact, closed spaces, crowded locations and when individuals are unvaccinated. Masks help reduce the risk of infection from the virus. Families and caregivers may consider using face masks, as well. There are very few medical conditions that would prevent children age 2 years and older from wearing face masks. Keep in mind:
The best protection is given by well-fitting N95/K95/KF94 masks, followed by well-fitting surgical/procedure masks.
Getting good coverage from a face mask may take extra attention for a child or teen who has a craniofacial condition. Find tips here to help your child get used to wearing a face mask, and how to get it to fit correctly.
Consider using social stories or a make a wearing schedule to ease your child into wearing a mask. For children who rely on lip reading, people in close contact can use face masks with transparent windows. Other ways to communicate, such as voice-to-text mobile apps may also be helpful. If your child has a behavioral therapist or occupational therapist, consider asking them to make mask wearing a part of your child's therapeutic goals.
Keep hands & surfaces clean. Wash hands and keep surfaces, shared spaces and shared objects clean. This helps prevent all diseases that are spread through direct surface contact. Ask if surface cleaning,
handwashing, and hand sanitizers are part of the process of what supplies will be available (either from the school or brought by the student).
Consider telehealth for clinic & therapy appointments
Talk to your pediatrician and specialists to plan which visits can be done virtually and which need to be in person. Verify that each visit is covered by insurance.
Virtual visits. Your pediatrician, specialists, therapists, and others who care for your child may offer telehealth appointments by phone, Skype, FaceTime, or another telehealth option. Home-based lab draws and diagnostic imaging tests may also be available. There are tools to help children and caregivers who need hearing or vision help participate in virtual visits
In-person appointments. Schedule care planning and health visits and use telehealth when needed. Plan for optimal timing of in-person visits, including vaccinations, such as early appointment times. Ensure safe transportation options for in-person appointments, especially those who rely on public transit. Creative, flexible and responsive accommodations can help meet your child's needs for in-person visits. Health care personnel should honor requests made by families to wear a face mask, even when it is not required.
Keep in-person instruction the priority for kids with special health care needs
Disruptions to in-person school affect learning for children with special health care needs. In-person school should be the priority—including and especially for children with special health care needs.
Work with your pediatrician and school to create plans that ensure your child's safety and does not single them out. Your pediatrician can help explain how schools and child care can continue using multiple layers of protection, keep track of community levels, masking, ventilation, and other supports to keep all kids learning in person.
Include strategies in their Individualized Education Program (IEP) or 504 plan.
For example, masking and air filtration can be requested to protect children and teens with special health care needs—even if the rest of the school has relaxed standards.
Annual IEP updates are required for children who are learning in virtual, hybrid and in-person formats. IEP plans and goals can and should be adjusted as needed. This includes any needs for compensatory education and services—even if this occurs more than once a year—especially since many evaluations and services were disrupted over the past few years.
Families can get support about education issues, including IEPs and 504 Plans here:
Not every child or adult will react in the same way to the stress of the pandemic, but it is likely that everyone is reacting in some way. These emotions and reactions affect children with cognitive disabilities, as well. Talk to your pediatrician about any concerns, signs or symptoms related to mental health.
Families, parents, and caregivers who take care of children with special health care needs are strong and resilient. But to continue taking care of your family, you must make sure that you engage in self-care activities by taking time for yourself, too.
About the authors
Dennis Z. Kuo, MD, MHS, FAAP, is the immediate past chairperson of the AAP Council on Children with Disabilities. He is also the Chief of Developmental and Behavioral Pediatrics at the University of Rochester Medical Center / Golisano Children’s Hospital.
Cara Coleman, JD, MPH, is the immediate past Family Voices liaison to the AAP Council on Children with Disabilities. She is a Policy Consultant with Family Voices and Associate Editor of Family Partnerships at Pediatrics.