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 complications. This includes children with chronic conditions, disabilities, and those with medically complex conditions. In addition, school and business closings may affect the availability of therapies and supports for these children. The impact is unknown but may be significant and long lasting.
Here are things that parents can do to keep themselves, their families, and their children with special health care needs safe during the COVID-19 outbreak:
Prepare your home
Hand washing is one of the most important ways to keep your child and your family protected 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.
Clinic and therapy appointments
Talk to your pediatrician, specialists, therapists, or anyone else who cares for your child about any upcoming appointments. They can let you know if the appointments need to be delayed. If the decision is made to delay the appointment, be sure you know how to get ahold of your doctor if you have any concerns about your child's health or behavior.
If the appointment is still necessary, there may be changes in how your child will receives services such as getting lab draws in a different location or going to a separate waiting area to be seen. Your doctor may suggest other ways to meet, such as by phone, Skype, FaceTime, or another telehealth option.
For home health care and in-home therapy needs, reach out to the agencies that provide the care to make sure services can continue. You can also look into options such as video calls that allow your child to stay in touch with their physical therapist, for example, to talk about how to keep up their physical therapy activities at home.
Talk to your pediatrician about getting extra medicines or supplies that your child needs, 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.
If your child requires protective masks, please avoid stockpiling them, but make sure you have enough to last for a few weeks. Be sure you have enough nebulizers and airway suctioning as well. If you need assistance with ordering extra supplies, talk with your pediatrician or care coordinator.
School closing and other changes in routine 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.
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.
social 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.
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. Children need information just like adults do. So, talk with your child, acknowledge their fears, and allow them to express their emotions.
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
It is important to note that these feelings and reactions are likely occurring for 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.
Monitor your child's emotional health during this time. Extended time at home and restrictions away from school may cause anxiety and concern. Maintain routines, connect with friends virtually, and take time for your family.
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.