By: Dennis Z Kuo, MD, MHS, FAAP & Cara Coleman, JD, MPH
COVID-19 is surging with new and more contagious variants, putting children still too young for COVID vaccines at risk for infection. Children and youth with special health care needs (CYSHCN) may be at increased risk for more severe illness and complications. This includes children with chronic physical, developmental, behavioral or emotional conditions, disabilities, and those with medically complex conditions.
During the pandemic, CYSHCN have been especially impacted by delayed and missed appointments, learning, therapies, and routines at school, home, and in the community. It is important for families to know how to minimize risk of COVID transmission and advocate for needed supports and services.
Using layers of protection to reduce risk
Here are some ways parents and caregivers can help themselves, their families, and their children with special health care needs meet their safety, growth, and health care needs during the COVID-19 pandemic:
Especially for children and teens with special health needs, it's important to use different layers of protection together to reduce the risk of spreading COVID-19. The biggest driver of risk for CYSHCN is the level of community transmission. More levels of protection should be in place with higher levels of community transmission. These layers of protection include:
- Immunizations. Children with special health care needs should continue to receive all recommended vaccines. The flu shot is especially important during the COVID-19 pandemic. All children age 12 or older should get the COVID-19 vaccine as soon as they are eligible, and younger teens and children once one is authorized for these age groups. Some adolescents and teens who got two doses of the mRNA COVID vaccines, and have weakened immune systems, can now get a third dose of vaccine. (See, "When can children get the COVID-19 vaccine?")
- Face masks. Nearly all children with special health care needs, age 2 years and older, can safely wear
face masks that securely cover the nose and mouth. There are very few medical conditions that would prevent a child from safely wearing them. If a child is not vaccinated against COVID-19, especially if community transmission is high, face masks should be used in public, indoors spaces at all times, outside when it is difficult to keep a 6-foot distance from others, and in accordance with federal, state, and local guidance. The AAP and the CDC recommend universal use of face masks in schools.
Anyone providing care or therapy for your child should wear a face mask, too, even if vaccinated--especially in closed or crowded spaces. Family members may also want to consider wearing face masks at home to help protect a child or adult at increased risk of severe illness from SARS-CoV-2 infection, especially if their jobs or other responsibilities put them at higher risk of exposure.
- Hands & surfaces.
Hand washing and
cleaning surfaces, especially in shared spaces and with shared objects, are two important ways to help protect your child from COVID-19. Put signs on your front door or on the door to your child's room to remind family members and caregivers to wash their hands often, for at least 20 seconds. Keep plenty of hand soap, tissues, wipes, and
hand sanitizer on hand for everyone in your home to use. Make kits or hand washing stations, if needed. 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 and what supplies will be available (either from the school or brought by the student). These layers of protection can be written into your child's Individualized Education Program (IEP) or 504 plan if needed, with support from your child's pediatrician.
- Safer space. Avoid the 3 Cs: closed spaces, especially those with poor air flow where
physical distancing alone may not be enough; crowded places, inside and outside; and close-contact, especially while singing, exercising and other activities that can raise the spread of respiratory droplets that can carry the SARS-CoV-2, the virus that causes COVID-19.
- Screening. Periodically screening care providers with COVID-19 testing who are in close contact with CYSHCN can offer an additional layer of protection. Examples include home care providers, child care providers, teachers and therapists. Families can partner with their pediatricians to help navigate conversations about COVID-19 vaccination status and use of face masks for those in close contact with CYSHCN.
The right fit & type of face mask for children and youth with special health needs
Getting good coverage from a face mask may take extra attention for children with special health care needs who have craniofacial conditions. 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 developmental, emotional or mental health diagnoses may also need intentional time and creative planning to help them get used to wearing a face mask. For example, families can use
social stories to help their children 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. Face shields are not a substitute for cloth face coverings, but they may provide some extra protection.
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.
Clinic and therapy appointments
If your child with special health care needs 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. When in-person appointments are necessary, you and your child (if over the age of 2) should wear
face masks , with rare exceptions for medical reasons, and be screened for fever and symptoms of COVID-19.
Among other changes to help keep children with special health needs safe, there may be a separate waiting area (including waiting in your vehicle until a room is ready) for your child to be seen. Early appointments, before other patients arrive, may also be an option. Families can partner with their pediatrician and request continuing such accommodations, even if no longer offered to the entire practice, if their CYSHCN not vaccinated or remains at higher risk.
Although COVID-19 and the pandemic is not over, the official "public health emergency" has already or will be ending in your state. This means that the rules around how you access Medicaid, insurance, what is covered, and all kinds of benefits may be changing again. Talk to your pediatrician about assistance with understanding these changes and how they affect care. For example, ask about if you can continue to receive more than a 30 day supply of medication or nutrition support (and what type of approval is needed or accommodation with mode of delivery to your home) or if you can continue to access telehealth. You can also reach out to the family-to-family health information center (Affiliate Archive - Family Voices) in your state to get information about access to Medicaid, and changes to benefits as we emerge from the pandemic.
Many of the supply chain challenges have ended, but be sure that you maintain a sufficient supply of masks, personal protective equipment, sanitizer and cleaning supplies to last a few weeks, without stockpiling, and to support your CYSHCN if they are returning to in-person school. Be sure you have enough nebulizers and airway suctioning as well. If you need assistance with ordering extra supplies or are having trouble finding what you need, talk with your pediatrician or care coordinator.
In-person school with special health needs
In-person school is the preferred goal for all children. However, high COVID-19 rates may disrupt in-person school and impact learning for some CYSHCN, particularly those at increased risk for severe COVID-19. Your pediatrician can help explain the known benefits and risks of attending school in-person, virtual learning, and various combinations schools may be using. Work with your school to understand and enhance safety protocols to promote in-person learning that accommodate all CYSHCN. Discuss the best and safest
school options and needed accommodations with your child's health care providers and educators and work together to develop creative, flexible and responsive accommodations as a way to implement or update
IEP and 504 plans.
If virtual school is the best option for a child at increased risk for severe COVID-19 illness, consider whether siblings should also utilize a remote option. If attending school virtually, children should have the chance to participate in some in-person activities such as outdoor events, if possible. For families experiencing food insecurity, school meals may be able to be picked up in batches or delivered to your home.
Changes in school routines can be stressful, so be sure to talk with your child about why they are staying home and what your daily structure will be during this time. See
Working and Learning from Home During the COVID-19 Outbreak for more details on how to manage these changes.
Coping and staying strong
Families, parents, and caregivers who take care of children with special health care needs are strong and
resilient. While many parts of the country emerge from the pandemic, there is increasing risk with the delta variant along with continued risk for CYHSCN. It can be challenging to not feel angry or stressed as life continues to be limited.
Remember to take
time for yourself as well and engage in self-care activities.
Recognize when you may need a break
Connect with other families virtually, through video chats, social media or texting
Take deep breaths, meditate, and engage in physical activity
Do an activity/hobby you enjoy
As a family, try to come up with creative ideas for how to stay active and healthy. Encourage children to suggest their ideas. Gather outside- to soak in the peace nature provides but also to be in a safer space.
Monitor your child's emotional health during this time, too. Talk with your child about their fears, and let them express their feelings. It is important to note that these emotions and reactions are likely affecting children with
cognitive disabilities, as well.
Not every child or adult will react in the same way to the stress of COVID-19, but it is likely that everyone is reacting in some way. Extended time at home and restrictions away from school may cause anxiety and concern. Maintain routines, connect with friends virtually, and build family time into the schedule.
Talk to your pediatrician about any concerns, signs, or symptoms related to mental health issues. More information about mental health supports during the COVID-19 pandemic are available
Community supports and services
During this time of change and uncertainty, it's even more important to stay connected. Reach out to peer support organizations, such as
Family to Family Health Information Centers, for local information specific to children with special health care needs and disabilities.
physical distancing does not mean that you are alone! But it may mean you'll need help with basic needs such as food or food delivery, ride shares, and getting medications. Reach out to a trusted case manager, friend, family-led or community-based organization, or your pediatrician for help. Some schools may have lunch pickup options. Work with community partners for delivery if needed.
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 General Pediatrics and Interim Chief of Developmental Pediatrics & Rehabilitation at UBMD Pediatrics at the University at Buffalo, State University of New York.
Cara Coleman, JD, MPH, is the immediate past Family Voices liaison to the AAP Council on Children with Disabilities. Cara is a Program Manager at Family Voices and Instructor of Pediatrics at the Virginia Commonwealth University Medical School.