New Website Section, Updated AAP Transition Info, & Epilepsy Camps

This newsletter was sent August 29, 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.

REMINDER: Take our California Children’s Services survey here.

Family Voices of California has created a website section devoted to highlighting the outstanding and ongoing work our Project Leadership graduates are involved in. The Project Leadership program  is a parent advocacy training whose overall goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Graduates have gone on to join family advisory councils, initiate and pass legislation, write op-eds and much more.

To check out Project Leadership In Action, click here.


Updated Policy: Age For Transition To Adult Care Should Be Based On Individual Needs

The American Academy Of Pediatrics no longer recommends “arbitrary age limits on pediatric health care” and states the age of transition should be left to patients and pediatricians. The policy acknowledges, among other factors, the growing number of children with special health care needs surviving into adulthood whose only access to specialized services is through their pediatricians. To read the policy, click here. Launches ‘Health Status’ Topic houses varying levels of data on the health and well-being of children in communities across California. Their newest topic, ‘health status,’ provides information on whether a child’s health is fair/poor, good or excellent/very good. Results can be viewed for all of California (pictured on right), by individual county, and by race/ethnicity or family income level. For more information, click here.

Related: Use Kidsdata? Take their survey here.


Survey Seeks Input From Siblings Of Children With Disabilities

The Center For Family Involvement is interested in learning how to better support siblings of children and youth with disabilities. Survey results will help inform the creation of future resources and projects. To access the questions, click here.

Losing Anthem/Cigna Coverage? Health Access California Wants To Hear From You

Anthem Blue Cross and Cigna will stop offering health insurance for most of the California individual market beginning next year. Coverage through Medicare, Medicaid and employers will remain unchanged. Over 300,000 people will need to switch plans, and some may face problems if currently in the middle of a course of treatment. Health Access California is advocating for continuity of care protections and seeking feedback from consumers who will be impacted by this change. To take the survey, click here.

Rally TOMORROW For AB 279: Regional Center Employee Wage Reimbursement

Assemblymember Chris Holden is organizing a public rally in support of his bill, AB 279, on the south steps of the State Capitol tomorrow at 10 a.m. The bill aims to preserve vital services for people with disabilities as regional centers in some of California’s largest cities are in danger of closing because the state won’t reimburse them for paying employees the locally mandated minimum wage. AB 279 would ensure these service organizations receive employee wage reimbursements. For more information, contact Naima Ford at

‘Bounce Out The Stigma’ Epilepsy Basketball Camps In Sacramento, Bay Area

The Epilepsy Foundation of Northern California is hosting two upcoming basketball camps for children with epilepsy 7-17 years old. The camps are four hours long and will be led by “Mighty” Mike Simmel, a former Harlem Wizards player who also has epilepsy. Tuition is $25. For more information on the Sacramento and Bay Area camps, click here.


Archived Webinar: Medi-Cal Services For Children And Youth With Autism And The Family-Focused Model Of Care

Hosted by: Family Voices Of California

Recording and slides here.

August 31: Celebrating 20 Years Of The Children’s Health Insurance Program (CHIP) And Looking Ahead

Hosted by: National Academy For State Health Policy

More information and registration here.

August 31: Fostering Family Engagement And Leadership In Early Hearing Detection And Intervention (EHDI) Systems

Hosted by: National Center For Hearing Assessment And Management

More information and registration here.

September 5: Promoting Skills To Survive And Thrive In The Teen And Adult Years

Hosted by: Global Down Syndrome Foundation

More information and registration here. ($10)

September 5: Coding For Sickle Cell Disease

Hosted by: American Society Of Hematology

More information and registration here.

September 5: Beyond The Basics: The Impact Of Zika Virus On Vision And Hearing

Hosted by: American Academy Of Pediatrics

More information and registration here.

September 6: Early Childhood Screening And Surveillance

Hosted by: American Academy Of Pediatrics Star Center

More information and registration here.

September 14: What Parents Need To Know About Quality Inclusion For All Children 

Hosted by: Statewide Parent Advocacy Network

More information and registration here.

September 14: The Gut Microbiome And Autism

Hosted by: The Johnson Center For Child And Health Development

More information and registration here.


Health Care Improvement In Stockton, California: Collaboration, Capacity-Building, And Medicaid Expansion

Target Unveils Clothing For Kids With Special Needs

Probiotic Bacteria Could Protect Newborns From Deadly Infection

Single Mom ‘Fighting So Hard” For Medically Fragile Child

When Those With Autism Age Out, What’s Next?

Children’s Hospital Colorado Preparing 25 New Cancer Trials After “Breakthrough” Law Signed

Bill Proposes Caps On How Long Mentally Incompetent Youth Spend In Juvenile Hall

Telehealth: A “Glimmer Of Hope” On Health Care Front

In-Home Nursing Care Still Lacking For Sick Kids

Mapping Out The Causes Of Suicide In Teenagers And Children

Med-Cal Gets A Bad Rap (response to July Wall Street Journal article)

Kids Find Breathing Room At Asthma Camp

Robotic Exoskeletons Show Promise As Tool to Help Kids With Cerebral Palsy Walk Easier

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