First-Ever Youth Track At Health Summit, Medical Complexity, & Understanding Trauma

This newsletter was sent November 29, 2016. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Reminder: Our 15th Annual Health Summit & Legislative Day will take place Feb. 27-28, 2017. More information and registration here. Free for families.


Family Voices Of California To Hold First-Ever Youth Track At Upcoming Health Summit & Legislative Day

Family Voices Of California is proud to announce that in addition to our regular Health Summit programming, youth who attend our conference will have the opportunity to participate in a dedicated track for, and led by, youth and young adults with disabilities. The goal of this first-of-its kind session is to educate those in attendance on the aspects of health care that are critical to consider as youth with special needs transition from pediatric to adult care. Youth Organizing! Disabled & Proud, an organization that connects, organizes, and educates youth with disabilities, is working with Family Voices Of California on this session and will help provide panel speakers. Registration for the youth track will be available soon. To register for the regular Health Summit, click here (free for families). 


Report: Recognition And Management Of Medical Complexity

Published in Pediatrics, this report acknowledges that pediatricians, payers, and policymakers should recognize children with medical complexity, or multiple chronic conditions, as a distinct group in research, payment, and policy reform in order to improve care management and reduce cost. The report states that the overarching goals for children with medical complexity are to maximize health, function, development, and family functioning through patient and family-centered care, and to provide proactive care so that critical medical and health events are avoided when possible. To read the report, click here

Ensuring Quality And Accessible Care For Children With Disabilities And Complex Health, Educational Needs: Workshop Proceedings

This publication is a result of the National Academies Of Sciences, Engineering, And Medicine‘s forum on promoting children’s cognitive, affective, and behavioral health. It summarizes a workshop that explored the needs and challenges faced by children with disabilities and complex conditions (and their families). The workshop also covered promising solutions and innovative approaches for improving care and outcomes. To download the publication, click here (select ‘download as guest’ and enter your email address). 


Fact Sheet: Understanding The Effects Of Trauma On Health

This fact sheet from Advancing Trauma-Informed Care, a national initiative led by the Center For Health Care Strategies, examines the causes of trauma and how it can impact childhood health. It also explores the role health care providers can play in helping patients heal, and the kinds of policy changes that can support trauma-informed care implementation. To view the fact sheet, click here.

Related: online module addressing the effects of adverse childhood experiences.


Virtual Systems Of Care Forum For Youth Leaders To Take Place On Dec. 15

Led by Youth M.O.V.E, the Direct Connect National Learning Community For Young Leaders will focus on systems of care in their December virtual forum. The session is geared toward youth who are leading engagement efforts in systems of care, and for those who want to develop professional skills and connect with peers who are using lived experiences to implement system change. To learn more and register, click here

Children With Autism Ages 6-12 Needed For Study On New Behavioral Eyeglass Aid

Researchers at Stanford University’s Wall Lab are looking for children with autism 6-12 years old who receive applied behavior analysis therapy at least twice per year to participate in a study on behavioral eyeglasses that are similar to Google Glass. The Autism Glass Project seeks to provide real-time behavioral cues and therapy sessions for its wearers as they interact with others. To learn more about the recruitment process and how to participate, click here, and to read an overview of the Autism Glass Project, click here.  



Archived Webinar: Caregiving Youth: A Community-Based Framework For Identifying And Supporting A Hidden Population

Watch here.

December 1: Reaching Rural Populations 

Sponsors: Autism Research Institute and Autism Speaks

More information and registration here

December 1: Using Patient Voices To Improve Your Organization

Sponsor: The Center For Care Innovations

More information and registration here

December 1 & 15 (Two-Part Series): Medi-Cal Coverage Of Mild-To-Moderate Mental Health Conditions: The Current Landscape And Opportunities For Improvement

Sponsor: The Center For Health Care Strategies

More information and registration here

December 7: Ask The Nutritionist: Live Q&A

Sponsors: Johnson Center For Child And Health Development and Autism Research Institute

More information and registration here

December 13: Measuring Social Determinants Of Health Among Low-Income Populations: Early Insights From State Initiatives 

Sponsor: The Center for Health Care Strategies

More information and registration here

December 13: Neuroinflammatory Hypotheses Of Depression

Sponsor: The Brain & Behavior Research Foundation

More information and registration here

December 14: Educating First Responders: Working With Individuals With Autism And Their Caregivers

Sponsor: Autism Research Institute

More information and registration here.

December 15: In-Home Supported Services For People With Disabilities

Sponsor: The UCS University Center For Excellence In Developmental Disabilities

More information and registration here

December 15: Election Impact: What To Expect Out Of Washington In 2017

Sponsor: The National Council For Behavioral Health 

More information and registration here

December 16: Anxiety And Autism: What You Need To Know

Sponsor: Johnson Center For Child And Health Development

More information and registration here


Family Fights For Down Syndrome Inclusion

Children’s Hospital Partnership Boosts Care For Sick Kids

The Other Sister: Returning Home To Care For An Autistic Sibling

This Is How We’re Failing Parents Raising Children With Special Needs

Worries About Health Insurance Cross Political Boundaries

My Life With Tourette’s Syndrome

I Know What It’s Like To Care For A Son With Microcephaly. My Child Is 53 Years Old

A Neglected Childhood Illness: Chronic Pain

Health Care Refugees: Family Flees Florida To Save Daughter’s Life

Along The Autism Spectrum, A Path Through Campus Life

Many Insured Children Lack Essential Health Care, Study Finds

Electronic Health Reforms Left Babies Behind

Microcephaly Found In Babies Of Zika-Infected Mothers Months After Birth


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