Family Engagement Grant, Autism & Melatonin, & A Blueprint For Children

This newsletter was sent October 4, 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.


FVCA Project Leadership Program Awarded 2-Year Grant To Continue Family Advocacy

We’re thrilled to share FVCA has been awarded a grant from Lucile Packard Foundation For Children’s Health to continue Project Leadership, our advocacy training program that equips families with skills to engage in all levels of public policy on behalf of children and youth with special health care needs. Project Leadership will transition into its fourth year, continuing expansion of statewide trainings as well as ongoing mentorship and support to graduates in their advocacy and leadership roles. To learn more about Project Leadership goals, click here.


Governor Brown Signs SB 586, California Children’s Services Redesign Bill, Into Law

SB 586 (Hernandez) impacts thousands of children in California with special health care needs who will be transitioning into Medi-Cal managed care plans no sooner than July 2017 under the Department Of Health Care Services’ Whole-Child Model. The state hopes this model will streamline care, and SB 586 ensures children will be protected. Governor Brown signed the bill on Sept. 25.

Related: Gov. Brown Signs Bill Allowing Fragile Children To Keep Doctors For 1 Year

Related: Sen. Hernandez’s press release announcing passage of SB 586

Registration Open For 15th Annual FVCA Health Summit & Legislative Day, Feb 27-28

Our annual Health Summit & Legislative Day brings together families, youth, providers, policymakers, advocates, and other stakeholders to identify the issues that affect children and youth with special health care needs. Join us in Sacramento for panel presentations on California Children’s Services, mental health, and more. Build relationships with families and professionals, and learn how to address legislators to implement change. Free for families, $50 suggested donation for professionals. To register, click here, and to view photos from this year, click here


State Seeks Public Comment On Plan To Evaluate Two California Children’s Services Pilots

The Department Of Health Care Services‘ proposal for evaluating two CCS pilot programs, Health Plan Of San Mateo and Rady Children’s, is available for public comment until Oct. 19. The draft proposals are under review by the Centers For Medicare & Medicaid Services, and results of the pilots could carry weight for the future structure of CCS. To learn more and provide comment, click here.


California Ranks #6 In United Cerebral Palsy’s 2016 “Case For Inclusion” Report

In United Cerebral Palsy‘s 2016 “Case For Inclusion” report, California ranks #6 (same as last year) for overall service for people with disabilities and their families. In addition, the state is one of only 15 offering family support to keep individuals with disabilities living at home, and we meet a “top-performing” 90% home-like setting standard. To read the full report and see how other states ranked, click here.


New School-Based Asthma Management Program From The American Academy Of Allergy, Asthma, And Immunology

Seeking to standardize recommendations for school-based asthma management, this program provides useful resources and includes an individualized asthma action plan. Emphasis is placed on care coordination between families, clinicians, and school nurses to improve outcomes. To learn more and read the full report, click here.

Blueprint For Children: How The Next President Can Build A Foundation For A Healthy Future

A new report from the American Academy Of Pediatrics provides recommendations for the next administration on improving the health and well-being of our kids—several of which relate to children and youth with special health care needs. A suggested policy agenda is divided into four subsections: healthy children, secure families, strong communities, and leading nation. In addition, there are separate recommendations for specific federal agencies and departments. To read the report, click here


Melatonin And Sleep Problems In Autism Spectrum Disorder: A Guide For Parents

This toolkit from Autism Speaks provides parents with introductory information on melatonin, a common supplement prescribed by doctors to help improve sleep quality in children with autism. The guide explains why melatonin is prescribed, its associated risks, how you can tell if it’s working, and more. To download the toolkit, click here


Individuals With Neurofibromatosis Type 1 Needed For Online Survey Participation

Researchers at the Indiana University School Of Medicine are recruiting individuals ages 5-25 (and their parents) for a study to develop a health-related quality of life instrument for NF1 to better understand and measure how the disease affects patient well-being. Participants must answer online surveys and will be given a $10 gift card for their time. For more information, email research associate Kavitha Nutakki at or call 317-278-0534.


October 5: Advocating For Your Child With Autism

Sponsor: SPARK

More information and registration here

October 6: Supporting People With Disabilities To Identify Appropriate Housing

Sponsor: The Arc

More information and registration here.

October 6: Parents’ And Students’ Rights In Special Education

Sponsor: The Johnson Center For Child Health And Development

More information and registration here.

October 10: Rights And Responsibilities As A Parent Of A Child With Disabilities

Sponsor: Family Network On Disabilities

More information and registration here

October 11: Population Health–Why It Matters 

Sponsor: Children’s Hospital Association

More information and registration here.

October 12: Income And Health Inequalities And Their Relationship To Population Health Delivery Systems–Research In Process

Sponsor: Systems For Action

More information and registration here

October 12: Idiopathic Pulmonary Fibrosis: Progression And What To Expect

Sponsor: Pulmonary Fibrosis Foundation

More information and registration here

October 12: Environmental Toxins And Autism Spectrum Disorder

Sponsor: Autism Research Institute

More information and registration here.

October 13: Emergency Evacuation Planning For People With Disabilities

Sponsor: ADA National Network

More information and registration here

October 13: Roles Of Families And Skills For Serving On Groups That Make Decisions

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

October 14: Epilepsy And Autism Seen Through The Brain

Sponsor: Autism Speaks

More information and registration here.

October 18: How To Reach And Engage With Hispanic Communities

Sponsor: Child Trends

More information and registration here.

October 19: Prophylaxis, Teens, And Adherence

Sponsor: National Hemophilia Foundation

More information and registration here.


How The ACA Is Helping Children With Special Needs And Their Families

Report: Voters With Disabilities Are Treated Like “Second-Class Citizens” At The Polls

Complex Child’s October Edition: Accessibility

East Texas Children Lose Therapy Services In Budget Cut Fallout  

Governor Signs Bills To Curb Psych Drugs To California Foster Youth

For Non-English Speaking Families, Getting Health Help At School Proves Elusive

FDA Approves First Drug To Treat Rare Form Of Muscular Dystrophy

What’s ALD? A New Genetic Test Will Identify California Newborns With Disease

Young Boy’s Struggle To Survive Sparked Widespread Push For Drugs For Terminally Ill

When Should Children Take Part In Medical Decisions?

In Mental Health Care, Are We Treating The Symptom But Not The Cause?

With Little Funding And Lots Of Effort, Communities Find Ways To Combat Childhood Trauma

Medicaid Transition Causes Hardship

Texas Supreme Court Allows Medicaid Cuts To Children’s Therapy to Proceed

Children’s Mental Health Directors Face Challenges, Study Finds

Opioid Epidemic’s Youngest Victims Are A Growing Group, New Data Shows

How High Blood Pressure May Hurt Children’s Brains

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