Resource eBlast October 2020
for families of children and youth with special health care needs
Partnering in the Pandemic and “Tele-Everything”
How can we partner and “share” in planning and decision making for the care of our children with special health care needs during the pandemic and a “new normal” of physical distancing and “tele-everything?” This eBlast for families shares ideas on ways that children, families, and providers can work together.
American Academy of Pediatrics (AAP) Introduced New Interim Guidance: Caring for Children and Youth with Special Healthcare Needs (CYSHCN) during the COVID-19 Pandemic
CYSHCN are more likely to experience disruptions in health care, education and community life as result of the pandemic, which can affect their development, learning and mental health. These impacts can be even more pronounced due to systemic inequities. What do we do? We work on it together as families, providers and professionals through multilayer risk reduction, coming up with creative, flexible and responsive accommodations and engaging in shared decision making. Let’s roll up our sleeves, talk about it and do some creative planning!
The Interim Guidance Promotes Shared Decision Making (SDM).
This is not a new way of making decisions, but it may not be the way things are done when discussing the care of your child. What is Shared Decision-Making (SDM) and how do you do it?

This clinical report from the AAP promotes SDM as family and provider collaboration, with the ultimate goals of improved health and satisfaction. Often in the discussion of plans of care, for example, there are gaps between the child’s/family’s values, priorities, and understanding of perceived “best choices” and those of the clinician. When conducted well, SDM affords an appropriate balance incorporating voices of all, ultimately supporting both the child/family and provider.
Photo of article heading and boy in wheelchair
This article provides some ways families can help themselves, their families, and their children with special health care needs to meet their safety, growth and health care needs during the COVID-19 outbreak (also available in Spanish).
Return to School During COVID-19…or “Return” in Some Way
Re-sharing this article so that when you have conversations thinking about how things are going, re-evaluating safety, or how to ensure best learning opportunities for any of your children, you have a good lens to start thinking and then start talking… with your partner, child, provider, educators, therapists and so many more (also available in Spanish).
This article offers advice and a look at the challenges building resilience! (Also available in Spanish.)
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