News & Events

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

A defining feature of children’s health in the US is the tremendous disparity by race and ethnicity, under-cutting the goal of providing all children with equal opportunities for success. The October 2020 issue of Health Affairs explores children’s health and provides a road map for future improvement.

Please join us on Wednesday, October 21, when Health Affairs Editor-in-Chief Alan Weil hosts a panel of authors to discuss their scholarly contributions to the issue.  His special guest will be Mayra Alvarez, President of The Children’s Partnership.

Date:     Wednesday, October 21, 2020
Time:    2:00 p.m. – 3:30 p.m. (Eastern)
Place:    Online meeting details to be shared with registrants in advance of the event

Register Here


White House releases their budget proposal. What impact could this have on CYSHCN families?

On Feb. 10, President Trump released his administration's fiscal year 2021 budget proposal op-line points from the President's budget proposal:

  • Increase funding to the Title V Maternal and Child Health Services Block Grant (MCH Block Grant) by $73 million.
    Proposed funding cuts to Maternal Child Health Programs :
  • Autism and other developmental disorders ($52.3 million in FY 19);
  • Emergency medical services for children ($22.3 million in FY 19);
  • Heritable disorders ($17.9 million in FY 19); and
  • Sickle cell disease treatment ($5.2 million in FY 19).
  • Read the full proposal here


What Does the Coronavirus Disease 2019 (COVID-19) Mean for Families?

Anew viral illness called coronavirus disease 2019 (COVID-19) was discovered in China in December 2019. Lessons learned from China and similar viral diseases can help families prepare for spread in the US. How children in the US will be affected is still mostly unknown. So far, proportionately fewer children have gotten sick in China, and the effects on them have mostly been mild. It is important for families to prepare for spread in the US. Read the full brief here


NIH-funded effort may help people with intellectual disability participate in clinical studies

The NIH Toolbox Cognitive Battery — an assessment of cognitive functioning for adults and children participating in neuroscience research —c an be adapted to people with intellectual disabilities by modifying some test components and making accommodations for the test-takers’ disabilities, according to researchers funded by the National Institutes of Health. The adaptations ensure that the battery can be used to assess the cognitive ability of people with intellectual disabilities who have a mental age of 5 years and above, providing objective measures that could be used in a wide variety of studies. Read the full article here


The Future of Pediatrics: Redefining Chronic Care - January 2020

Edward Schor, MD, a member of the CYSHCNet advisory committee, publishes a brief with the Lucile Packard Foundation suggesting pediatric care re-envisions what it means to provide chronic care. Schor suggests changes to pediatric care that can more effectively meet the needs of patients with chronic conditions. Read the full brief here


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

Our First External Grant! - October 2019

The Lucile Packard Foundation approved our grant proposal for the national research agenda supplement! Huge thanks to everyone who made this happen and to the writing groups whose work will make the agenda come to life. Thanks, of course to the Foundation and their generosity!


Colorado and Boston Hospitals Lead National Network to Improve Health of Children and Youth with Special Needs - July 2019

A new research network for children and youth with special health care needs (CYSHCNet), led by researchers at the University of Colorado School of Medicine, Children’s Hospital Colorado and Boston Children’s Hospital, will lead, promote and coordinate national research activities to improve their systems of care. Funded through the U.S. Department of Health and Human Services, the Health Resources and Services Administration (HRSA), the Maternal and Child Health Bureau, the 11-site research network will lead, coordinate and promote health systems research for CYSHCN. The network’s work will strengthen the base of evidence related to key components of a comprehensive, high-quality system of care for CYSHCN. It will respond to a need among CYSHCN and their families for evidence about how best to deliver and coordinate care for their conditions. Click for more!


Dr. Jamie Feinstein interviewed by Popular Science Magazine for his work on opioid prescribing to CYSHCN
Dr. Jamie Feinstein interviewed by Popular Science Magazine for his work on opioid prescribing to CYSHCN (May 2019)

Dr. Feinstein and his colleagues’ study on opioid prescriptions for children and youth with special health care needs has been published in the journal Pediatrics. The findings show that opioid exposure in CYSHCN is common, especially with multiple chronic condition and polypharmacy. Dr. Feinstein anticipates that this study will inform opioid prescribing guidelines and policies for CYSHCN at the hospital and governmental levels. To ensure the safety of opioid use in CYSHCN, the development of evidence-based opioid prescribing guidelines is paramount, including best practices for follow-up evaluation. Dr. Feinstein was interviewed by Popular Science magazine about his study. Click for more!


Eleven abstracts accepted for presentation at PAS (February 2019)
Eleven abstracts accepted for presentation at PAS (February 2019)

Eleven abstracts were accepted for poster or platform presentation at PAS by network researchers. The projects include:

Variation in Hospitalization Rates Following Emergency Department Visits in Children with Medical Complexity (Ryan Coller, poster)

Health System Research Priorities for U.S. Children and Youth with Special Health Care Needs: Expert Perspectives (Ryan Coller, platform)

Chronic Medication Use in Children Insured by Medicaid: A Multi-State Retrospective Cohort Study (Jamie Feinstein, poster)

Re-Designed Perioperative Care for Children with Medical Complexity Undergoing Spinal Fusion for Scoliosis (Jay Berry, poster)

Shared Surgical Decision Making for Children with Medical Complexity: Parent Advice on Considering Spinal Fusion (Jay Berry, platform)

Health Insurance Regulation and Impact on Children: Evidence vs. Fiction (Morgan Crossman & Olivia Lindly, poster)

Medical Trauma and Resilience for Children with Special Healthcare Needs: Child and Parent Perspectives on Coping with Inflammatory Bowel Disease (Molly Easterlin, poster)

Child and Parent Perspectives on the Acceptability of Virtual Reality to Mitigate Medical Trauma in a Pediatric Infusion Center (Molly Easterlin, platform)

Characteristics and outcomes of emergency department visits in a comprehensive care program for children with medical complexity (Henry Zapata, platform)

Transition of Hospital Type Use for Adolescents and Young Adults who have Complex Chronic Conditions (Ashley Jenkins, platform)

Healthcare Utilization and Spending for Children with Mental Health Conditions in Medicaid (Stephanie Doupnik, poster)