Select Committee on CYSHCN Update & Care Coordination

This newsletter was sent April 8, 2016. 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.


CDC: No Change In Autism Prevalence, Children Not Receiving Early Evaluations

While the estimated percentage of children with autism still remains high, the CDC reports there has been no change in the prevalence of reported diagnoses. They also note that children with autism are not receiving comprehensive developmental evaluations as early as they could be. To read a summary of the CDC’s key findings, click here.

Second Meeting Of Senate Select Committee On Children And Youth With Special Health Care Needs

The Select Committee, chaired by Senator Dr. Richard Pan, met for a second time on April 5 to discuss the barriers and challenges of interagency care coordination. Often, a child’s care map extends far and wide to include an immediate and external network. The committee’s goal is to break down silos of care so that children with special health care needs can have easier access to their support systems. To listen to or watch a recording of the meeting, click here.

CCS Redesign: State Rebuffed, Won’t Move Fragile Kids To Managed Care—For Now

After hearing testimony from families and providers, the Assembly budget subcommittee voted to hold off on phase one of the Department of Health Care Service’s proposal to transition nearly 20% of children with disabilities to managed care. The bill was voted on on March 14 and unanimously rejected. It has now been added to the Governor’s proposed budget. Read more in the California Healthline article here.

Family Voices of California: 14th Annual Health Summit & Legislative Day

fist bump

We’d like to extend our heartfelt gratitude to all families, advocates, professionals, speakers, and sponsors that made this year’s Health Summit extremely successful! The conference took place on March 14 and over 138 people attended. Highlights included a keynote by Senator Dr. Richard Pan on the formation of the Senate Select Committee On Children And Youth With Special Health Care Needs, panel discussions on Medi-Cal Managed Care, the future of California Children’s Services programs, and mental health. The following day, 57 family members made over 25 legislative appointments at the Capitol. To see photos from the conference, click here, and to check out a list of our generous sponsors click here. A highlights report will be made available soon.

Family Voices Brings Project Leadership Training To AMCHP Conference April 6-9

Family Voices of California Project Leadership State Liaison Allison Gray traveled to Washington, D.C. to attend the Association of Maternal and Child Health Programs annual conference where she gave a poster presentation on Project Leadership, a parent advocacy training program developed by Family Voices of California council members. The title of her presentation was “Effecting Health Care Policy Change, One Parent at a Time.” Project Leadership is designed to help family members develop the skills and tools they need to partner at all levels of decision making and engage in public policy advocacy activities in California on behalf of children and youth with special health care needs.

Family Voices National: 2016 Leadership Conference

Over 150 family representatives from all 50 states attended the Family Voices National conference on March 30-31. This year’s theme was “Expanding Our Reach, Impacting The Future” and workshops ranged in topic from system changes at the local, state, and national level as well as recruiting adult and youth leaders and developing “value add” partnerships. For a look at the full conference brochure, click here.


April 13: Take Action On Care Coordination

This webinar will feature a parent’s perspective, along with real-life examples from a provider and a payer, on how to develop effective local care coordination systems. It’s designed as a first step in building a national movement to promote care coordination policies and payment options that better serve children, families, and care providers. The discussion will center around the report, The Care Coordination Conundrum And Children And Youth With Special Health Care Needs, a summary of which can be ready here. To register, click here.

April 20: Approaches To Community Access, Participation, And Engagement For Children With Developmental Disabilities And Their Families

Led by Roger Ideishi, this webinar will address all things accessibility. For children with developmental disabilities, accessibility demands more than exposure and presence in the community. It should take into consideration opportunities that foster meaningful connections with the experience and create links to the physical, social, and cultural aspects of the environment. To register, click here.

April 21: Parents Taking Action: Empowering Latina Mothers of Children with Autism Spectrum Disorder

Despite the fact that Latino children are one of the fastest growing autism spectrum disorder populations, they are one of the most underserved groups with respect to diagnostic services, health care, and specialty autism services. This webinar will discuss the development of a culturally-based approach to addressing information needs of Latino parents. To register, click here.

April 28: The Rules Of Sex For People With Developmental Disabilities

A clinical psychologist specializing in sexuality and people with developmental disabilities, Nora Baladerian will discuss the do’s and dont’s of sex, different kinds of sexuality, possible outcomes of having sex, and when, where, and whom it’s okay to have sex with. To register, click here. 


The Road To Recovery: Supporting Children With Developmental Disabilities Who’ve Experienced Trauma


This toolkit for providers offers information on supporting a child’s well-being, happiness, and recovery through a trauma-informed practice. To download, click here (you must create a profile).

What Families Need To Know About Changes In Special Enrollment Periods

This tip sheet provides information on two major policy changes related to special enrollment periods in the marketplace. You’ll be able to quickly review a list of qualifiers that have been eliminated and added. To download, click here.

Getting And Keeping Health Care Coverage For Low-Income Californians: A Guide For Advocates

Organized by the Western Center For Law And Poverty, this guide provides advocates with the relevant statutes, regulations, and guidance needed to help their clients access health care coverage. To download, click here.


CCS Medical Directors Tackle Thorny Issues” 

“Bill Seeks Benefits For Caregivers”

More Sickle Cell Patients Survive, But Care Is Hard To Find For Adults

“Tiny Opioid Patients Need Help Easing Into Life

New Model For Meeting The Needs Of The Most Fragile Children

Program Helps Families Address Developmental Concerns”  

Hillary Clinton Takes A Stand Against ‘Subminimum Wage’ For People With Disabilities

President’s Task Force Aims To Help End Discrimination In Mental Health Coverage

What Happens When The Online Bully Is A Child With Special Needs

A Day With A Sixth-Grader: How One School Supports a High-Needs Student” 

Student Suspensions In California Charter Schools Follow Familiar, Troubling Patterns

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