Caring for Special Needs Kids During the Pandemic
Tips from the American Academy of Pediatrics
COVID-19 is surging with new and even 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, children and youth with special health care needs (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 the risk of COVID transmission and advocate for needed supports and services..
Using layers of protection
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, indoor 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 the 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 airflow 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 the use of face masks for those in close contact with CYSHCN.
Getting Face Masks to Fit
Getting good coverage from a face mask may take extra attention for children with special health care needs who have craniofacial conditions. 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
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.
When in-person appointments are necessary, you and your child (if over the age of two) 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 these accommodations, even if they are no longer offered to the entire practice, if their CYSHCN are not vaccinated, or remains at higher risk.
Check to see if you can receive more than a 30 day supply of medication or nutrition support (and what type of approval is needed or accommodation with the 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 is the preferred goal for all kids. However, high infection 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 might use. Work with your school to understand and enhance safety protocols to promote in-person learning that accommodates all CYSHCN. 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 so they don’t bring illness home. If attending school virtually, children should have the chance to participate in some in-person activities such as outdoor events, when possible. For families experiencing food insecurity, school meals may be able to be picked up in batches or delivered to your home.
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. #
Courtesy of the American Academy of Pediatrics (aap.org).