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 agray@familyvoicesofca.org.

EVENTS

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

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.