Helpful Phone Apps, Fetal Alcohol Awareness Month, & CHIP Webinar

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.


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 seeProfessionals 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.


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.


September 13: The Children’s Health Insurance Program: What’s Next?

Hosted by: National Conference Of State Legislators

More information and registration here (you must create a free account to register).

September 19: Health Literacy Vs. The Lookup Generation 

Hosted by: The University Of Minnesota

More information and registration here.

September 20: Meaningful Family Engagement From Early Childhood To High School

Hosted by: The National Resource Center For Mental Health Promotion And Youth Violence Prevention

More information and registration here.

September 20: PANDAS And Autism Spectrum Disorder

Hosted by: Autism Research Institute

More information and registration here.

September 22: Navigating Care Choices: How To Help Consumers Shop For Value

Hosted by: The National Institute For Health Care Management Foundation

More information and registration here.

September 26: Aging And Disability: Planning For Growing Older

Hosted by: The Arc

More information and registration here.

September 26: Tantrums, Meltdowns, And Outbursts, Oh My! Strategies For Helping Your Child Cope During Overwhelming Situations

Hosted by: Autism Research Institute

More information and registration here.

September 28: Policing People With Disabilities: A Call For Procedural Justice

Hosted by: The Arc

More information and registration here.


Complex Child: Organization And Preparation Edition

Babies’ Race Affects Quality Of Care In California Neonatal Intensive Care, Study Says

Google Glass Is Back – As A Tool to Coach Autistic Children, Train Doctors, And More

Harvey Brings Unique Challenges For Those With Disabilities

Feds Award Millions For Autism Research

Blue-Tag Abuse: Disabled-Placard Cheaters Work The Angles

Framing Health Care As A Civil Right

Neonatal Facilities Increasingly Use Donated Breast Milk To Save Premature Babies

AAP: Characteristics Of Children Enrolled In Medicaid With High-Frequency Emergency Department Use

Congress’ Tight Timetable Complicates Renewal Of Children’s Health Plan

Space For Families to Stay Together: New Patient Rooms At Stanford Children’s

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