This newsletter was sent September 12, 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.

September Is Fetal Alcohol Spectrum Disorders Awareness Month

The month of September has been designated as Fetal Alcohol Spectrum Disorders Awareness Month. Both the American Academy Of Pediatrics and the National Organization On Fetal Alcohol Syndrome have released toolkits to help raise awareness, promote surveillance and screening and ensure all affected children receive appropriate and timely interventions. The toolkits also include social media tools and resources for connecting with local events. AAP Toolkit here / NOFAS Toolkit here.

RESOURCES

Phone App Round-Up: Useful Tools For Managing Health Care At Your Fingertips

HydroAssist: allows you to record, store and access your entire hydrocephalus treatment history. Designed for both patients and caregivers. More information here.

Epilepsy Tool Kit: key features include a seizure diary, the ability to export information directly to your doctor and automatic medication reminders. More information here.

Also see: Professionals Epilepsy Manual app.

Spine Screen: this app allows parents to monitor their child’s spine by scanning for abnormal curves. Developed by doctors at Shriners Hospital in Sacramento. More information here.

My Medical ($4.99): this app provides a platform for tracking general health information for your entire family. More information here.

Family Media Plan Creator: This website allows parents to create a personalized family media plan that prioritizes thoughtful media use alongside face-to-face interaction, family time, exercise and downtime. Developed by the American Academy Of Pediatrics. More information here.

Issue Brief: Access To Mental Health Services for Children With Special Health Care Needs

The National Health Law Program recently released a new issue brief discussing findings from a 2016 survey of service providers for children with special health care needs (CSHCN). The survey identified mental health care and counseling as the most difficult services for CSHCN in California to access. The issue brief includes stakeholder input on ways to improve access to mental health services for CSHCN, with a particular focus on legal interventions. To read the issue brief, click here.

OPPORTUNITY FOR INPUT

NICU Parent Symposium Scheduled For Next Month Near Sacramento

The NICU (Neonatal Intensive Care Unit) Family Alliance is hosting a free conference for parents of children who are in, or have been in, the NICU. Attendees will learn about available resources, exchange ideas and meet other parents within the NICU community. The day will feature multiple panel discussions and cover topics such as how to cultivate communication to ensure better care and continuity of care while transitioning your child home. For more information and to register (free), click here.