FVCA Diges-May 2018

This newsletter was sent May. 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.

Please join us for these free Webinars hosted by Family Voices of California.
Educational Advocacy After Brain Surgery Part 1
May 30, 2018 12:00 PM PDT

Register here:  https://register.gotowebinar.com/register/5657071278090414082]

Educational Advocacy After Brain Surgery Part 2
June 6, 2018 12:00 PM PDT

Register here: https://register.gotowebinar.com/register/6771045882500817409

These presentations are intended to provide information to help parents and professionals understand the impact on a child’s brain after injury or surgery and how to advocate for special education programs and services for those children and youth. Training topics will include: function of each brain lobe/region, impact of brain injury on functional outcomes,  understanding the Individual Education Program (IEP) process; basic special education rights; referral procedures for special education assessment; parent rights in the IEP process; and effective advocacy techniques.

Webinar Presenter: Audrey Vernick, Director of Educational Advocacy and Training at The Brain Recovery Project: Pediatric Epilepsy Surgery Foundation.


New Lucile Packard Foundation for Children’s Health report regarding children in California with special health care needs enduring delays in securing the much needed medical equipment and supplies.  This report examines the administrative barriers that are behind these chronic delays, and offers recommendations for what can be done to address them.

Read the full report and a fact sheet outlining its recommendations.

Also See: Special Needs Children Often Left Waiting for Medical Equipment, Report Says


2018 HEALTH SUMMIT

Read highlights of this year’s Health Summit


Pediatric Cancer Bill Cleared by Congress

On May 22, the House passed S. 292, the Childhood Cancer STAR Act, by a voice vote. The bill had already passed the Senate by unanimous consent. The legislation is intended to advance research on, surveillance of, and treatments for pediatric cancer. The bill now goes to the president for his signature. See this press release from the House Committee on Energy & Commerce.

OPPORTUNITIES

PREPARE TO VOTE!

The Lanterman Coalition interviews Gubernatorial Candidates.

POLICY—CONVENE AND LEARN

Thursday, June 7 (Sacramento) – Disability Capitol Action Day in downtown Sacramento.

TRAINING/INFORMATION – Meetings, Conferences, Webinars

Friday, August 3 (Davis)– MIND Summer Institute on Neurodevelopmental Disorders. Family Scholarships available. 

Saturday, August 4 (Hawyard)– Congreso Familiar conference (in Spanish!). 

15th National Conference on Hydrocephalus, Orange County, California | June 28-30, 2018

Disability Rights California Events

RESEARCH

Help improve state and workplace policies for family caregivers in California by completing this brief survey.
Link to survey in Spanish

RESOURCES

According to the American Academy of Pediatrics (AAP), dental care is the most common unmet need among  children with special needs:

Teach Good Oral Hygiene To Your Child With Special Needs

Proven Strategies for positive behavior support,including real-life video examples:

Support your children’s behavior at home

WEBINARS

May 31st- Developmental Screenings in Medicaid and CHIP: Federal Progress, State Opportunities

May 30th- Webinar Series for Youth Self-Advocates: Leadership is a Journey

May 31st,June 28th- Got Transition Webinar Series — Health Care Transition for Title V Care Coordinators
June 6th- A Conversation on Meaningful Family Engagement, from Clinical Care to Health Policy

ARTICLES

Four Takeaways From Trump’s Plan To Rescind CHIP Funding

Feds Release New Stats On Restraint And Seclusion In Schools

UC San Diego to use controversial marijuana compound to treat severe autism

Clovis High freshman finds connection to girls basketball team

Inclusion sucks!

Homelessness and people with severe disabilities

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