New CYSHCN Systems of Care Brief, Project Leadership Update, & Medical Home Webinar

This newsletter was sent October 24, 2017. 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.

Save the date: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26-Feb. 27, 2018 in Sacramento. More information and registration here.

Project Leadership Training-of-Trainers

Family Voices of California facilitated its Project Leadership Training-of-Trainers Workshop in San Francisco Oct. 11-13. The workshop prepares participants to implement the Project Leadership mentorship training to parents and caregivers of children and youth with special health care needs. Participants learned best practices for implementing the training as well as potential budgeting and funding options. Thirteen representatives from nine agencies were in attendance. For the first time, Family Voices opened the workshop to out-of-state agencies and welcomed participants from Hawaii, Oregon, and Montana. The next Project Leadership Training-of-Trainers workshop will be held Nov. 29-30 in Los Angeles (registration full). To learn more about Project Leadership, click here or email Allison Gray at


Lucile Packard Children’s Hospital Stanford To Hold Family-Friendly Open House

The Lucile Packard Children’s Hospital Stanford is running three tours of their new hospital in anticipation of its grand opening. During the 45-minute tours, guides will share highlights of the new space while kids participate in a trick-or-treat adventure. Oct. 27-29 / Palo Alto / times vary. To register, click here

Workshop: Coping With The Diagnosis Of Severe Food Allergies

Food Allergy Research And Education is partnering with Stanford University to host a two hour workshop on the often overlooked aspect of a food allergy diagnosis: the emotional toll. A panel of experts will offer personal and professional experience in supporting parents, families, and children with food allergies. Nov. 8 / Palo Alto / 7-9 p.m. To register, click here.


Resources And Policy Options: Improving Systems Of Care For Children With Special Health Needs

The National Conference Of State Legislators published a new brief outlining programs, funding options, standards, data, state approaches, and policy options that states have used or may consider to improve systems of care for children and youth with special health care needs (CYSHCN) and their families. Report findings also indicate that families of CYSHCN have a variety of needs that extend beyond financial concerns including assistance navigating services, accessing a medical home, education and training, and/or appointment transportation. To read the report, click here

Study: Black, Hispanic Children With Developmental Delays Less Likely To Receive Early Intervention Services

A new study from the American Academy Of Pediatrics found that fewer than 25 percent of children eligible for early intervention services use them, and that black and Hispanic kids are much less likely to be identified as needing services than white children. Researchers interviewed 22 mothers to explore how maternal health beliefs influenced their decision to seek help for developmental delays. Black and Hispanic mothers often reported feeling pressured into using services rather than perceiving services as beneficial. To read the study, click here.

Report: The New Importance Of Children In America

The Lucile Packard Foundation For Children’s Health (LPFCH) released a new report emphasizing that all children  regardless of gender, ethnicity, geographic residence, or economic background   are critically important to the future sustainability of our economy. The report acknowledges that the aging, retiring Baby Boomer generation combined with low birth rates could create a shortage of children who would otherwise enter the workforce and pay taxes. In addition, the report calls for heavier investment in children in order to maximize their capabilities and future earning power. To read the report, click here, and to listen to a short interview with Dr. David Alexander, CEO of LPFCH about its findings, click here


October 25: Retrofitting The Medical Home For Children With Special Health Care Needs

Hosted by: Family Voices Of California

More information and registration here.

October 25: Equity In School Funding: A Webinar For Local Community Groups And Education Leaders

Hosted by: Children Now

More information and registration here.

October 26: Positive Psychology, Mindfulness, And Prevention In Children’s Mental Health

Hosted by: Idaho Federation Of Families For Children’s Mental Health

More information and registration here.

October 30: Implementing Trauma-Informed Care Into Organizational Culture And Practice

Hosted by: Center For Health Care Strategies

More information and registration here.

November 1: Communicating With Your Kids: Sexuality And Developmental Disabilities 

Hosted by: Family Voices Of California

More information and registration here.

November 2: Fetal Alcohol Syndrome Disorder Advocacy: Setting The Stage For 2018

Hosted by: National Organization On Fetal Alcohol Syndrome

More information and registration here.

November 7: ADHD: What Is It, Who Has It, And What To Do About It?

Hosted by: Autism Research Institute

More information and registration here.

November 15: Addressing Symptoms Of PANS And POTS Nutritionally

Hosted by: Autism Research Institute

More information and registration here.


New Blood Pressure Guidelines For Children

Autism Insurance Mandates Boost Access To Care, Study Says

Why Are More American Teenagers Than Ever Suffering From Severe Anxiety?

Tightening The Leash On Fake Service Animals

One Nurse Per 4,000 Pupils = Not The Healthiest Arrangement

Trial Set In LA Disabled Students’ Suit Alleging Community College Blocked Their Education

Target, Tommy Hilfiger Expand Adaptive Clothing Lines

Governor Signs Three Key Bills For Children

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