Health Summit Photos & Videos, A 100-Page Resource Guide, & IDEA Website Input

This newsletter was sent March 28, 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.

Family Voices of California would like to extend a big ‘thank you’ to all the family advocates who took the time to contact their Congressional representatives to voice concerns about the American Health Care Act, a bill which would have fundamentally restructured California’s Medi-Cal program. It was pulled from the House floor on March 24 before it could be voted on. For more information, click here.

At the end of February, Family Voices of California hosted its 15th Annual Health Summit & Legislative Day in Sacramento. Families and professionals from Humboldt to San Diego came together to discuss issues that affect children and youth with special health care needs.

For a full recap, check out our highlights report. To view photos, click here. If you’d like to browse PowerPoint presentations from panelists and watch videos of presenters, click here.

“I felt part of a larger network of people who care about my child and children like her. It felt so good to talk to people who ‘get it.’ I learned strategies to interact with my legislators, and I felt empowered!” — Health Summit attendee.


Exceptional Parent 2017 Resource Guide Now Available: 100+ Pages Of Information

This compendium of resources for the special needs community is published annually by Exceptional Parent and includes a national directory for disability-specific conditions, adaptive recreation organizations, mental health resources, and more. To access the guide, click here.

Report: Over Half Of America’s Doctors Agree Climate Change Harming Kids’ Health

A new report from The Medical Society Consortium On Climate & Health outlines how climate change is negatively impacting our health and taking a greater toll on children and those living with chronic illnesses. Key concerns for kids include higher rates of asthma and allergy attacks due to air pollution, and a strain on mental health. The Consortium, a newly-formed coalition of organizations representing over half of America’s physicians (including the American Academy Of Pediatrics), plans to deliver the report to Congress, the Trump administration, and CEOs of Fortune 500 companies to push for a transition to renewable energy. To read the report, click here.

RelatedDoctors: Climate Change Is Already Making America’s Kids Sicker

Affordable Care Act Toolkit For Self-Advocates From Autistic Self Advocacy Network

This toolkit from the Autistic Self Advocacy Network aims to explain what the Affordable Care Act (ACA) is, and why it matters to people with disabilities. The three-part guide covers how different parts of the ACA have improved health care, what concerns self-advocates have, and a glossary of common terms in plain language. Every section is  screenreader-accessible. To access the toolkit, click here.

Related: VIDEO: Medi-Cal Is Critical For Children And Youth With Special Health Care Needs


Patient-Centered Outcomes Research Inst. Seeking Nominations For Rare Disease Panel

PCORI is looking for a new member to join its advisory panel on rare disease, which aims to bring voices from across the health care community into rare disease research. For more information on how to apply or nominate someone, click here. Deadline: March 31.

Related: National Organization For Rare Disorders 2016 State Report Card

Department Of Education In Need Of User Feedback To Inform Updated IDEA Website

The Office Of Special Education And Rehabilitative Services is looking for input from users of the website as part of their effort to provide updated, easy-to-navigate IDEA resources to children with disabilities and their families, teachers, administrators, advocates, and other stakeholders. To leave website feedback or suggestions, click here.


The National Center For Family/Professional Partnerships in collaboration with the Autistic Self-Advocacy NetworkKids As Self-Advocates, and Youth MOVE is offering a webinar series for youth and young adults focused on leadership development. The next two webinars are set to take place on April 11 (Telling Your Story For A Public Policy) and May 16 (Working With Adult Allies). For more information and to register, click here.

March 29: Childhood Adversity: Data To Help Advocate For Change

Sponsors: California Department Of Public Health and KidsData.Org

More information and registration here.

March 29: Using Evidence To Achieve Effective State Health Policy

Sponsor: National Academy For State Health Policy

More information and registration here.

March 29: David Mandell Explores Healthcare, Education, And Autism

Sponsor: Spectrum

More information and registration here.

March 29: Genetic Testing For Cardiomyopathy Families

Sponsor: Children’s Cardiomyopathy Foundation

More information and registration here.

March 30: Strategies For Improving Law Enforcement Responses To People With Behavioral Health Conditions

Sponsor: Substance Abuse And Mental Health Services Administration

More information and registration here.

March 30: Health Insurance 101 For People With Asthma And Allergies

Sponsor: Asthma And Allergy Foundation Of America

More information and registration here.

April 4: Beyond The Classroom: Strategies For Businesses And Communities To Accommodate, Support, And Encourage Inclusion

Sponsors: Autism Research Institute and Johnson Center For Child And Health Development

More information and registration here.

April 5: Can You See Me Now? Authentic Representation Of People With Disabilities On Television

Sponsor: Diversability

More information and registration here.

April 6: Autism, Electroconvulsive Therapy, And The Treatment Of Our Most Impaired Children

Sponsor: Autism Society SF Bay Area

More information and registration here.

April 12: Maintaining An Active And Healthy Lifestyle

Sponsor: National Hemophilia Foundation

More information and registration here.

April 17: CalABLE Workshop For Service Providers

Sponsor: CalABLE

More information and registration here

April 18: Parents And Privacy: Considerations On The Digital Footprint We Create For Our Children

Sponsor: Autism Research Institute and Johnson Center For Child And Health Development

More information and registration here


Proposed Law Would Require All California Children To Be Screened For Lead (Related: Lead screening fact sheet)

Julia, A Muppet With Autism, Joins The Cast Of ‘Sesame Street’

Driven By High Asthma Rates, Central Valley Tries To Improve Indoor Air Quality

For Gideon, Infection With A Common Virus Caused Rare Birth Defects

Does Illness Help Young Adults Take Charge Of Their Own Health?

My Child Is Fighting A Rare Disease. A ‘Streamlined’ FDA Won’t Help Her

Trump’s ‘Skinny Budget’ Sows Uncertainty For Disability Programs

Nike Improves Shoe Accessibility

Infant Deaths, Stubbornly High In The U.S., Continue A Promising Decline

Cure Me? No Thanks

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