News & Events

News, Events, Webinars & Conference Information from Across Our Network


To Keep Their Son Alive, They Sleep in Shifts. And Hope a Nurse Shows Up: Network Members Quoted in New York Times Article on Nursing Shortages - June, 2021

Network members Carolyn Foster M.D., Eddie Simpser, M.D., Cara Coleman, J.D. were quoted in a recent New York Times article discussing the impact of pandemic-driven nursing shortages on parents of children with intensive special needs. Hundreds of thousands of children in the United States require intensive home-care nursing services. Pay gaps and insufficient support for in-home nurses have been exacerbated by the COVID-19 pandemic, contributing to shortages of in-home nurses. This in turn places major strains on caregivers of children with complex medical needs. Click here to read the full article


An Almost Complete List of Services Used by Families and Children with Special Health Care Needs - January 2020

Children with chronic and complex health conditions require a wide array of health care and other services. A new list out of the Lucile Packard Foundation developed by Edward L. Schor, MD classifies services that may be useful to children with special health care needs and their families. This list details family, health, community services and more! Click here to see the full list


Family Burden and Medical Complexity: Wrestling with the Meaning and Impact of Commonly Used Terms - January 2020

Meg Comeau, MHA, a parent of a young adult with special needs and a professional in the CSHCN field, suggests that terms such as “family burden” and “medical complexity” are viewed differently by parents and professionals. This difference can impact on how services are provided. She proposes reconciling those views, with the goal of creating a better system of care in this new brief. Read the full brief here