Phoenix Children’s Hospital and the Arizona state Maternal and Child Health (MCH) Title V / Children and Youth with Special Health Care Needs (CYSHCN) program collaborated to adapt and implement content from the curriculum to enhance care coordination for children with medical complexity (CMC) and their families seen at Phoenix Children’s Hospital. The adaptation was very successful, and planning is underway to facilitate additional trainings on shared plans of care and family-professional partnerships with care coordination stakeholders who attend the initial training. Read more.

Our very own Meg Comeau, a long-time CSHCN professional and the Principle Investigator for The Collaborative Improvement and Innovation Network to Advance Care (CoIIN) for Children with Medical Complexities (CMC), suggests that commonly used terms such as “family burden” and “medical complexity” are viewed differently by parents and professionals, with consequent impact on how services are provided. She proposes reconciling those views, with the goal of creating a better system of care. Read more.

Children with medical complexities (CMC) need a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. This article looks at the sociodemographic disparities in the intensity of end-of-life care for CMC and whether or not they are receiving high-quality and goal-concordant care end-of-life care. Read more.

Care Cara Coleman from Family Voices gives insight on how families of children and youth with special health care needs and disabilities play a key role in home- and community-based services for their children. Cara’s blog offers a meaningful perspective on how families are not passive observers in pediatric health care, but active participants in the system. Read more.

This article by our own Cara Coleman was featured in the 2019 Exception Parent-Physician-Patient-People (EP) Guide: Navigating Special Needs Resources. It includes both a poignant, down-to-earth and refreshingly honest approach to the topic, as well as a host of tangible resources, not just for end of life, but for quality of life for CMC and their families.

Pediatricians need to be aware of the potential impact of psychosocial factors on the health and well-being of CSHCN and their families, according to a clinical report from the American Academy of Pediatrics recently published in Pediatrics. The report provides guidance for pediatric providers to facilitate and coordinate care and urges pediatric practices to collaborate with behavioral health providers, schools, social services, and other community agencies that are part of their patient’s life.
Dennis Kuo is a member of the CMC CoIIN National Advisory Committee

This blog post shares practical, insightful suggestions from experts regarding how state Medicaid agencies can better engage patients in the policymaking and implementation process.

This blog post explores what Pay for Success can bring to Medicaid and how it can be integrated into managed care and value-based purchasing.

Researchers in Minnesota recently found that a shortage of home care nursing staff contributed to increased costs and hospital length-of-stay for medically complex children with intensive care needs. Author Rhonda Cady is a member of the Minnesota State Team.