Hello CHARLENE,

Welcome to CYSHCNet’s first bi-monthly newsletter. Our intent with this publication is to share content that is relevant to network members and our growing number of partners and friends. Our aim is to share our news, and to profile people doing great work that is aligned with our mission of improving health care systems for CYSHCN. 

In this issue, you will find: 

• Network News. The Standards for Compensation for Youth, Family, and Patient Partners is now available in Spanish + links to a recent webinar about the first paper released from the CYSHCNet National Research Agenda.
• Patient Perspectives. Mallory Cyr, MPH, is a member of the CYSHCNet advisory committee and a strong advocate for children and youth with special health care needs. 
• Conferences and Events. This includes the latest information available from our network partners. 
• In the News. Here are stories related to CYSHCN you may have missed. 

If you have news you would like us to include in the next issue, email us!

Network News

The Standards for Compensation for Youth, Family, and Patient Partners is now available in Spanish.

This free resource helps researchers and their family partners understand the levels of support, compensation, and reimbursement families should receive as research partners. The guide offers a version for investigators and a version for research partners, available in English and now also in Spanish. Please share with your network!

“As a parent, it was validation. I not only had a seat at the table, but was considered an equal partner.” ~ Yetta Myrick, Family Partner

Patient Perspective

Mallory Cyr shares her experiences with care transition to help CYSHCN.

“We advocate and advocate and advocate until we break. And that's the truth."~ Mallory Cyr, MPH

Transitioning to adult health care is a vulnerable time for any YSHCN, something Mallory Cyr, MPH can attest to. There are no “magic bullets” to address the myriad of systemic issues medically-complex patients like Mallory face. She hopes her experience can help researchers better understand barriers and design studies to improve outcomes.

For 36 years, Mallory has lived with a rare disease. As a public health professional and advocate, she has embraced her vulnerability and her story to shine light on aspects researchers should consider when measuring outcomes related to transitions.

“I don’t typically talk about this experience because the transition conversation often stays in the pediatric landscape, but we need to start broadening the conversation, involving adult providers.”

Conferences and Events

Information is up-to-date as of January 26, 2022.

• CYSHCNet Annual Meeting: April 19-20 | Save the Date (information coming soon)
• Pediatric Academic Societies (PAS) 2022: April 21-25 | Denver, Colorado | Register
• Association of Maternal & Child Health Programs (AMCHP) 2022 Annual Conference: May 24-26 | Virtual | Register
• AcademyHealth Annual Research Meeting: June 4-7 | Washington DC | Register (opens Feb. 2022)

In the News

• Home Health Care Utilization in Children with Medicaid. Although many children with medical complexity (CMC) use home health care (HHC), little is known about all pediatric HHC utilizers. Our objective was to assess characteristics of pediatric HHC recipients, providers, and payments. Children using HHC are a heterogeneous population who receive it from a variety of providers. Future investigations should explore the role of non-nurse caregivers, particularly with CMC.

• Criminalization of Gender-Affirming Care — Interfering with Essential Treatment for Transgender Children and Adolescents. Arkansas recently passed a law prohibiting the provision of gender-affirming treatment to children and adolescents who have gender dysphoria. This legislation threatens the health and well-being of young people in a variety of ways. For children and youth with special healthcare needs who are also transgender, interference with these services may further compound the challenges they face in meeting their mental and physical health care needs.

• When Women and Children Made the Policy Agenda — The Sheppard–Towner Act, 100 Years Later. This article notes the 100-year anniversary of the Sheppard-Towner Maternity and Infancy Protection Act, which, had it been maintained, could have developed into a maternal and child health care system integrating preventive and social services. Pushback from the American Medical Association and anti-suffragist organizations ultimately led to the discontinuation of the act. This history highlights the historical resistance of the medical profession to relinquishing power and autonomy, and in doing so demonstrates the importance of our continuing efforts to democratize health care research by educating health researchers on the importance of meaningfully involving patients and parents as partners in the work that we do.

• COVID is Driving a Children’s Mental Health Emergency In light of the children’s mental health crisis precipitated and driven by the COVID-19 pandemic, California passed the ACEs Equity Act in October of 2021. This law (the first of its kind) requires any insurance provider covering preventative care and pediatric services to also cover screenings for adverse events. Behavioral health issues are a significant component of CYSHCN health care needs, making this topic and these types of screenings relevant and important.

• Changing Who Has a Seat and Voice at the Table: How the Academic Pediatric Association is Responding to Systemic Racism. This article details the creation of the APA Anti-Racism and Diversity Task Force and the steps that it has taken over the past two years working to integrate anti-racism and social justice into their work. 



• State Laws Aim to Regulate ‘Troubled Teen Industry,’ but Loopholes Remain. Many states are taking steps to regulate the “troubled teen industry,” a term that refers to residential youth treatment programs that offer treatment for teenagers with behavioral and substance use challenges. Some utilize abusive, dangerous, or scientifically unsupported approaches. Behavioral health care needs are special health care needs, and organizations that provide services must benefit and account for the needs of their patients. These regulations seek to ensure quality care for these individuals.

CYSHCNet is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government. Website