CYSHCN Immigrant Toolkit, Parent Training Recap, & New Family Engagement Grant

This newsletter was sent December 5, 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.

Tax bill update: the Senate passed detrimental tax legislation early Saturday morning. For information from Families USA on how to stop this bill from becoming law, click here. To read how tax cuts would negatively impact people with disabilities, click here.

Project Leadership is funded by the Lucile Packard Foundation for Children’s Health

Southern California Project Leadership Training-of-Trainers Recap, New Grant Awarded

FVCA facilitated its Project Leadership Training-of-Trainers workshop at the California Endowment Center For Healthy Communities in Los Angeles Nov. 29-30th. The workshop prepares participants to implement the Project Leadership training and mentorship to parents and caregivers of children and youth with special health care needs (CYSHCN). Participants learned best practices for implementing the training as well as potential budgeting and funding options. Fifteen representatives from 10 agencies were in attendance. FVCA has offered this workshop twice annually over the past three years in an effort to expand the Project Leadership training across the state.

Additionally, FVCA was recently awarded a new grant from the Lucile Packard Foundation for Children’s Health to support the position of a Project Leadership Family Engagement Manager who will enhance the ongoing coordination, mentoring, support, and education of the growing network of graduates. To learn more about the Project Leadership program, click here.

A big thank you to the 2018 Health Summit sponsors!

This year’s conference will be held Feb. 26th with legislative visits scheduled the following day. Be sure to register soon as space is limited. Along with panels on Medi-Cal, mental health, and family engagement, FVCA is also partnering with YO! Disabled & Proud to offer a youth track geared toward young adults with disabilities. To register, click here.


Report: Integrating The Patient And Caregiver Voice Into Serious Illness Care

The National Academy Of Sciences, Engineering, And Medicine has published a proceedings of a workshop report based on discussions held during a public workshop. Panel topics included gaps and solutions for integrating patient, caregiver, and family voices into person-centered care delivery across all ages, diagnoses, and disciplines; addressing health equity, implementing a relationship-centered approach to addressing unique challenges (such as providing team-based perinatal and neonatal care for seriously ill infants and their families); and more. To read the report, click here.

Immigrant Resource Toolkit For Families Of Children With Special Health Care Needs

This toolkit from Family Voices is a collection of documents designed to inform, empower, and assist families of children and youth with special health care needs and the professionals who support them in the event of an emergent immigration situation. Additionally, the toolkit contains supporting documentation that reflects the extent of potential hardship a child with special needs may face if their caregiver is detained or removed. To access the toolkit, click here.


Researchers At San Jose State University Recruiting For Study, Summer Camp

The Department Of Kinesiology at San Jose State University (SJSU) is looking to better understand how exercise can serve as a form of intervention for children with autism. For more information on the below studies, email Professor Areum Jensen at

Basic neural mechanism research: this ongoing study seeks to understand the relationship between brain activity and the cardiovascular system in children with autism (any age). The study would take 2.5 hours and be conducted in SJSU’s exercise laboratory.

Spartan Youth Summer Camp: this camp is open to both typically developing children and those with autism (ages 7-13). Activities will center around fun physical activities such as basketball, judo, and table tennis. June 18th – August 10th (Monday – Friday). 9:30am – 2:30pm at the SJSU campus.


Archived Webinar: Understanding California’s Regional Centers: From Yesterday To Today And Tomorrow

Hosted by: Family Voices Of California

Recording and slides here.

December 12: Universal Accessibility, Emergency Preparedness, And Disaster Response

Hosted by: The Mid-Atlantic ADA Center

More information and registration here.

December 13: Aging And Intellectual/Developmental Disabilities: Planning For Growing Older

Hosted by: The Arc

More information and registration here.

December 14: Preparing For The New Year: Standing On Top Of The (Paper) Mountain

Hosted by: The Johnson Center For Child And Health Development

More information and registration here.

December 19: Value-Based Payment Strategies For Patients With Complex Health And Social Needs

Hosted by: Institute For Healthcare Improvement

More information and registration here.

January 10: Stress and Gastrointestinal Issues In Children With Autism

Hosted by: Autism Research Institute

More information and registration here.

January 24: You Shouldn’t Have To Be A Rocket Scientist To Access Services For Kids With Disabilities

Hosted by: Family Voices Of California

More information and registration here.

January 24: Adaptive Automotive Equipment Options For People With Spinal Cord Injuries

Hosted by: United Spinal Association

More information and registration here.


Nothing About Us Without Us (Family Voices National blog published in the American Academy Of Pediatrics journal)

CDC Says Developmental Disabilities Are On The Rise

With Teen Mental Health Deteriorating Over Five Years, There’s A Likely Culprit

California Could Lose $2.7 Billion In Kids’ Health Funding – And There’s No Backup Plan

The Damage To Children’s Health Insurance Is Already Being Done

A Week Of Obesity Predictions Paints Dire Health Future For Today’s Kids

For Children With Autism, Zip Code Matters

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