News & Events

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


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


Deadline Approaching for Grant Inquiries - January 2020

February 12 is the deadline for Letters of Inquiry (LOI) for the Foundation’s next grant cycle. The Lucile Packard Foundation funds programs and projects that will contribute to improving systems of care for children with special health care needs and their families. Read about the application process here.


New Grantmaking Policy: Family Engagement Required - December 2019

One of the priority areas for our Foundation is ensuring that families are involved at all levels of policymaking in the health care systems that serve them. To that end we have implemented a policy requiring that family members have a meaningful role in all our grant-funded activities, and that project budgets include compensation for these roles. Read about the new policy and find suggestions about how various stakeholders can get started on promoting enhanced family engagement.


Feds Seek Information about Family Caregiving Challenges - December 2019

The National Recognize, Assist, Include, Support and Engage Family Caregivers Act (the RAISE Act ) became law in January 2018. It requires the Department of Health and Human Services (HHS) to develop and maintain a national strategy to recognize and support family caregivers, and to organize an Advisory Council to make recommendations. Now, in preparation for the Advisory Council’s initial report to Congress, HHS is providing an opportunity for individuals and organizations to submit information on the challenges faced by caregivers. This information will help guide the development of the national family caregiving strategy. To offer your thoughts, submit this form by February 7, 2020.


Updated Policies on Autism Spectrum Disorder and Developmental Surveillance Screening - December 2019

The Council on Children with Disabilities (COCWD) and the Section on Developmental and Behavioral Pediatrics (SODBP) authored an updated clinical report (Identification, Evaluation, and Management of Children with Autism Spectrum Disorder) on autism spectrum disorder (ASD) recommending the following:

1. Conduct developmental and behavioral surveillance during all well visits with children, developmental screening at the 9-, 18-, and 30-month visits, and standardized screening of patients for ASD at 18 and 24 months of age.
2. Help ensure that children with ASD are provided with evidence-based services to address social, academic and behavioral needs at home and school, with access to appropriate pediatric and mental health care, respite services and leisure activities.
3. Engage with families and youth to plan a transition to the adult system of medical and behavioral care.
4. Inform patients and families about the evidence for interventions, refer families for possible participation in clinical research and refer families to support organizations.
Read the Full Report here and the Executive Summary here

The second report (Promoting Optimal Development: Identifying Infants and Young Children with Developmental Disorders Through Developmental Surveillance and Screening)recommends the following :

1. Physicians should perform developmental surveillance at every well child visit from early childhood through adolescence.
2. Physicians should refer a child to early intervention or preschool special education as well as for complete developmental and medical evaluations when the child is determined to be at risk for a developmental disorder based on screening or surveillance.
3. Standardized developmental screenings should be conducted at the 9-, 18-, and 30-month well-child visits. In addition, physicians should administer a screening for ASD during the 18- and 24-month health supervision visits.
4. Medical providers should identify and address barriers to screening in the medical home -- such as payment, professional education and office workflow -- to achieve universal screening of all children during early childhood.
5. Ongoing investigation into screening and referral rates should continue, with the goal of achieving universal screening of all children.
6. More research should be conducted to increase the evidence base for effectiveness of developmental surveillance and screening tools.
Read the Full Report here

The 2019 - 2020 COCWD Executive Committee includes Dennis Z. Kuo, MD, MHS, FAAP as Chairperson and Christopher Stille, MD, MPH, FAAP as a member!


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!


Eleven abstracts accepted for presentation at PAS (February 2019)
Pediatric Academic Societies (PAS) 2020 Meeting - April 29 - May 6, 2020

This premier international meeting will bring together pediatricians—from generalists and community practitioners to sub-specialty researchers and academics—and other health care providers united by a common mission of improve the health and well-being of children in US and worldwide. Format: State-of-the art plenary sessions, panel discussions, Meet the Professor breakfast sessions, basic-clinical-translational round tables, debates/pro-con discussions, hot topic/topic symposia, industry sponsored symposia, workshops, special interest groups meetings, core curriculum fellows’ series and poster presentations. Click for more!


AMCHP 2020
Association of Maternal and Child Health Programs - March 21 - 24, 2020

The AMCHP Annual Conference is the ideal venue to present your ideas, research, innovative programming, best practices and effective outreach strategies to MCH and other public health practitioners. Our audience includes directors of state programs, federal officials, advocates, family leaders, researchers and health care providers. Click for more!


APHA 2019 conference
2019 APHA Annual Meeting and Expo - November 2, 2019

APHA's Annual Meeting and Expo is the largest and most influential annual gathering of public health professionals. Nearly 13,000 attendees join us each year to present, learn and find inspiration. Click for more!


AAP experiences
AAP Experience National Conference and Exhibition - October 25 - 29, 2019

The AAP National Conference & Exhibition is the premier venue for pediatric health care professionals to come together and share their passion for the health of all children. The meeting draws more than 10,000 professionals and offers over 400 sessions in 70 topic areas from interactive, hands-on workshops to thought-provoking plenary sessions. The 2019 National Conference will feature plenary sessions on front-line topics such as advocacy, interactive media, climate change, physician wellness, substance use and housing security. Click for more!


The Next Steps to Improving Home Health Care for Children with Medical Complexity - October 23, 2019

More children are surviving serious chronic conditions than ever before, which means home health care is essential to supporting their care. Children may need home health care to help with medication administration, respiratory care, or activities of daily living. Recent shortages in home health care providers have led to additional family burden. Addressing workforce issues, from competitive wages and better training, to telemedicine, and alignment with adult-focused care initiatives can help alleviate undue family hardship. Join us for a discussion of potential solutions from the perspectives of parent advocates, home health care providers, pediatricians, and state officials. Featuring CYSHCNet Youth & Family Research Partner: Cara Coleman. 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!


Network Young Investigator, Dr. Ashley Jenkins, receives the 2018 Academic Pediatric Association Young Investigator Award and the Society for General Internal Medicine Founders Award (April 2019)
Network Young Investigator, Dr. Ashley Jenkins, receives the 2018 Academic Pediatric Association Young Investigator Award and the Society for General Internal Medicine Founders Award (April 2019)

Ashley Jenkins, MD is a current Internal Medicine-Pediatrics hospital medicine and research fellow at the Cincinnati Children’s and University of Cincinnati Medical Centers. She is the recipient of the 2018 Academic Pediatric Association Young Investigator award and the Society for General Internal Medicine Founders Award for junior investigators to support work focused on understanding factors associated with timing of transition from pediatric to adult inpatient care for adolescents and young adults with chronic conditions of childhood. Dr. Jenkins is collaborating with the CYSHCNet Secondary Data Center on her work.


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)