As 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:
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:
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 jobs or other responsibilities put them at increased risk of exposure.
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.
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 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.
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.
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.
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 over age 16 should get the COVID-19 vaccine as soon as they are eligible, and younger teens and children once one is approved for these age groups.
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.
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.
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.
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.
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.
During this time of change and uncertainty, it's even more important to stay connected. Reach out to peer support organizations for local information specific to children with special health care needs and disabilities.
Remember, 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.