By: Dennis Z Kuo, MD, MHS, FAAP & Cara Coleman, JD, MPH
COVID-19 continues to spread, 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. School, supports, activities and routines may also be disrupted on an ongoing basis.
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 outbreak:
Using layers of protection to reduce risk
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:
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.
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 virus.
Face coverings. Nearly all children with special health care needs, age 2 years and older, can safely wear masks or
cloth face coverings that securely cover the nose and mouth. There are very few medical conditions that would prevent a child from safely wearing them. Face coverings should be used in public, indoors spaces at all times, and outside when it is difficult to keep a 6-foot distance from others.
Anyone providing care or therapy for your child should wear a cloth face covering, too, especially in closed or crowded spaces. Family members may also want to consider wearing face coverings at home to help protect a child or adult at increased risk of severe illness from SARS-CoV-2 infection, especially if their jobsor other responsibilities put them at increased risk of exposure.
The right fit & type of cloth face covering for children and youth with special health needs
Getting good coverage from a mask or cloth face coverings 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 cloth face covering, 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 mask or cloth face covering. 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 coverings 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.
Screening. Where a good supply of COVID-19 tests is available, periodically screening care providers in close contact with children with special health needs can offer an additional layer of protection. Examples include home care providers, child care providers, teachers and therapists.
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. 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 masks or
cloth face coverings , 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 for your child to be seen. Early appointments, before other patients arrive, may also be an option.
Talk to your pediatrician about getting extra medicines or supplies that your child needs during the pandemic, including any medical technology and nutrition support. If your child is on a special diet or requires a specific type of food (like infant formula, for example) be sure you have enough on hand. Some insurance companies may require special approval to allow you to get a supply of medication beyond 30 days. If this is not possible, see if you can get refills for your child's medications by phone or delivered to your home.
Try to have enough masks or cloth face coverings and other personal protection equipment to last a few weeks, without stockpiling. Be sure you have enough nebulizers and airway suctioning as well. If you need assistance with ordering extra supplies or are having finding what you need, talk with your pediatrician or care coordinator.
In-person school with special health needs
Discuss the best and safest
school options and needed accommodations with your child's health care providers and educators. Your pediatrician can help explain the known benefits and risks of attending school in-person, virtual learning, and various combinations schools may be using. Even if your child's school has already “re-opened, there is always time to work with your doctor and school 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. But it's hard not to feel stressed or anxious in this unprecedented time.
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.
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.
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. Work with your schools to ensure IEPs and 504s are addressed and arrange for home therapies or teletherapies if available. 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 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 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.