By: Dennis Z. Kuo, MD, MHS, FAAP & Cara Coleman, JD, MPH
If your child has special health care needs, your family may still be recovering from the delays, cancellations and changes to daily routines and support systems during the COVID-19 pandemic.
Now, as communities relax steps such as masking to protect against COVID-19, you may wonder how best to keep your child or teen with special health care needs safe.
Children and youth with special health care needs have chronic physical, developmental, behavioral or emotional conditions, disabilities and medically complex conditions. These can put them at risk for more severe illness and complications from COVID-19.
It's important to keep speaking up about supports, services and solutions you need for your child and family as we move forward.
Use layers of protection & creative, flexible ways to safely meet needs
The level of community transmission is still the biggest driver of risk for kids with special health care needs. When there are
higher levels of community transmission, more levels of protection should be kept in place. These layers of protection include:
COVID-19 vaccines (and boosters) for all eligible children and adults, especially everyone who has contact with kids with special health care needs. This includes family members, household contacts, health care workers and education workers. Some kids age 5 years and older who got two COVID-19 vaccine doses and have weakened immune systems should get a
third dose of vaccine. Some kids age 12-17 years with weakened immune systems should get additional
All 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.
Masks & other personal protective equipment. Certain children with special health care needs with conditions known to put them at
higher risk for severe illness with SARS-CoV-2 infection, as well as their families and caregivers, may need the type of personal protective equipment used by health care workers, such as N95 respirators and eye protection. Talk with your pediatrician about whether special protective gear may be needed. Keep in mind:
There are very few medical conditions that would prevent children age 2 years and older from wearing
face masks that completely cover the nose and mouth. 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.
Some children with a developmental, emotional or mental health diagnosis may need focused time and creative planning to encourage them to keep wearing a face mask.
social stories to help your child become familiar with masks or slowly build tolerance over time with a wearing schedule. For children who rely on lip reading, people in close contact can use face masks with transparent windows. Additional ways of communicating, such as voice-to-text mobile apps may also be helpful. If your child has a behavioral therapist or occupational therapist, consider asking these professionals to make mask wearing a part of your child's therapeutic goals.
Safer spaces. Avoid the 3 C's: closed spaces, crowded places (inside and out) and close contact. These can spread respiratory droplets and viruses.
Screening tests. COVID screening tests can be a useful tool for care providers who are in close contact with your child and can offer another layer of protection. People who may need to test more often include home care providers, child care providers, teachers and therapists. Partner with your pediatrician to help navigate discussions with care providers about COVID-19 vaccination status and use of face masks.
Hands & surfaces. Hand washing and cleaning surfaces, especially in shared spaces and with shared objects, remains important. This is true not just for COVID, but also for other diseases that are spread readily through direct surface contact. If your child is attending school, therapies or other activities in person, have conversations to make sure surface cleaning and handwashing are part of the process. You can ask what supplies will be available (either from the school or brought by the student).
Continuing layers of protection
Ensure your child can keep using layers of protection they need. Advocate for adequate ventilation in the classroom. Work with your pediatrician and school to create plans that let your child continue to wear masks in their classroom in a way that ensures their safety and does not single them out. Consider including these strategies in their Individualized Education Program (IEP) or 504 plan.
Mask use in the home
A family plan for use of face masks may be helpful in your home. For example:
masking protects children who are not eligible for the vaccine or are too young to wear a mask
during times when exposure risk is elevated
in the setting of high community transmission
and to stop the virus from spreading from others in your home, especially when someone is sick
Have a plan in place if your child gets sick
Ask your pediatrician to help develop a plan in case your child or a household member is exposed, infected or hospitalized with COVID-19. The plan should include information on accessing antiviral treatment or monoclonal antibodies if available and eligible. Families should share this information with their child or teen's school.
Consider telehealth options for clinic and therapy appointments
If your child has regular and multiple provider visits, talk to your pediatrician and specialists to plan out a schedule to regularly check in and review needs. Ask which visits can be done virtually and which need to be in person, as well as what 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 available 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.
Keep in-person instruction the priority for kids with special health care needs
Disruptions to in-person school affects 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.
Your pediatrician can work with you, the school and others in planning how to prioritize safe in-person instruction. Your pediatrician can help explain how schools can continue using multiple layers of protection, keep track of community transmission rates, use testing, masking, ventilation, and other supports to keep all kids learning in person. You can also ask your pediatrician about benefits and risks of in-person, virtual and combinations of learning.
Families can find support about education issues, including IEPs and 504 Plans, through
parent training and information centers. Parents also can review the
Individuals with Disabilities Education Act (IDEA) requirements. Annual updates to your child's IEP are required regardless of their learning or attendance format (virtual, hybrid, in-person). Your child or teen's 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 frequently than once a year – especially since many evaluations and services were disrupted over the past two years.
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. It is important to note that these emotions and reactions are likely affecting children with
cognitive disabilities, as well. Talk to your pediatrician about any concerns, signs, or symptoms related to
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.