FVCA Digest-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

Webinar: Accessing Services For CYSHCN, Family Engagement Fact Sheet, & Health Equity

This newsletter was sent December 19, 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.

Parents of children and youth with special health care needs often spend countless hours trying to understand, navigate, and access services. This webinar will discuss research on the service inequalities within educational, medical, and social service systems as well as current policies that are intended to reduce these disparities.

Webinar presenter Sarah Taylor, MSW, PhD is a teacher, scholar, and facilitator with over 20 years of experience in social services and higher education. She’s currently an Associate Professor of Social Work at California State University, East Bay.

To register, click here.

Date: January 24th / 12pm PST

Hosted by: Family Voices of California 

RESOURCES

Trinka & Sam: The Big Fire Coloring Book

Developed in collaboration with the National Child Traumatic Stress Network, this new coloring storybook by Piplo Productions was created to help children talk about their feelings after experiencing a large-scale fire. Trinka & Sam, two mice friends, have helped children discuss natural disasters such as hurricanes, earthquakes, and tornados. This coloring book was created in response to the recent fires in California, Montana, and Oregon. To view the book, click here (English & Spanish).

People Living With Disabilities: Health Equity, Health Disparities, And Health Literacy: Proceedings Of A Workshop

Poor health literacy has many negative consequences for achieving better care, improving the health of the community and the population, providing affordable care, and improving the work life of health care providers. These consequences disproportionately affect those with disabilities and those who experience health disparities. To better understand how health literacy, health equity, and health disparities intersect for individuals living with disabilities, the Roundtable On The Promotion Of Health Equity And The Elimination Of Health Disparities and the Roundtable On Health Literacy jointly sponsored a workshop. This publication summarizes the presentations and discussions from the workshop. To read the report, click here (you must click ‘download as guest’ and enter your email).

Fact Sheet: Engaging Families In Improving The Health Care System For Children With Special Needs

This fact sheet from the Lucile Packard Foundation For Children’s Health outlines the value of family engagement, the barriers that prevent its implementation, and offers recommendations for improvement in California. In order to create a high-quality health care system, the family perspective must be incorporated at all levels — direct care, organizational design and governance, and policymaking. To read the fact sheet, click here.

WEBINARS

Archived Webinar: Medicaid Quality Measurement For Children And Youth With Special Health Care Needs

Hosted by: National Academy Of State Health Policy

Webinar recording and slides here.

December 20: Post-Open Enrollment Issues

Hosted by: Center On Budget And Policy Priorities

More information and registration here.

January 10: Perfect Together: Aligning And Leveraging State Education Agencies And Parent Centers In Shared Work

Hosted by: Family Network On Disabilities

More information and registration here.

January 24: You Shouldn’t Have To Be A Rocket Scientist To Access Services For Kids With Disabilities

Hosted by: Family Voices Of California

More information and registration here.

February 7: Strategies For Teaching Emotional Control To Persons With Autism

Hosted by: Autism Research Institute

More information and registration here.

ARTICLES

GOP Tax Bill Expected To Preserve Medical Expense Deduction

Quick Reference Guide For California’s Federally Qualified Health Centers

Can This Water Park Make Fun More Inclusive?

Complex Child December Edition: Caregivers

Treating Anxiety In Children

Most Pediatric Oncology Professionals Willing To Consider Medical Marijuana, Particularly For Advanced Illness

Jimmy Kimmel Enlists His Infant Son, Billy, To Remind Congress It Needs To Fund Children’s Health Care, STAT

As Zika Babies Become Toddlers, Some Can’t See, Walk Or Talk

The Link Between Older Parents And Autism Is Clear, But They Why Is Not

Research Finds Novel Method Of Handling Premature Births May Improve Outcomes

Trump-Republicans’ Tax Plan, All About Well-Being Of Corporations, Not People

Initiative Aims To Disrupt High Rates Of Preterm Births

The Disabled Flaneur

Families Of Patients Fear GOP Tax Plan Will Slash Drug Development For Rare Diseases

Down Syndrome Families Divided Over Abortion Ban

CYSHCN Immigrant Toolkit, Parent Training Recap, & New Family Engagement Grant

This newsletter was sent December 5, 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.

Tax bill update: the Senate passed detrimental tax legislation early Saturday morning. For information from Families USA on how to stop this bill from becoming law, click here. To read how tax cuts would negatively impact people with disabilities, click here.

Project Leadership is funded by the Lucile Packard Foundation for Children’s Health

Southern California Project Leadership Training-of-Trainers Recap, New Grant Awarded

FVCA facilitated its Project Leadership Training-of-Trainers workshop at the California Endowment Center For Healthy Communities in Los Angeles Nov. 29-30th. The workshop prepares participants to implement the Project Leadership training and mentorship to parents and caregivers of children and youth with special health care needs (CYSHCN). Participants learned best practices for implementing the training as well as potential budgeting and funding options. Fifteen representatives from 10 agencies were in attendance. FVCA has offered this workshop twice annually over the past three years in an effort to expand the Project Leadership training across the state.

Additionally, FVCA was recently awarded a new grant from the Lucile Packard Foundation for Children’s Health to support the position of a Project Leadership Family Engagement Manager who will enhance the ongoing coordination, mentoring, support, and education of the growing network of graduates. To learn more about the Project Leadership program, click here.

A big thank you to the 2018 Health Summit sponsors!

This year’s conference will be held Feb. 26th with legislative visits scheduled the following day. Be sure to register soon as space is limited. Along with panels on Medi-Cal, mental health, and family engagement, FVCA is also partnering with YO! Disabled & Proud to offer a youth track geared toward young adults with disabilities. To register, click here.

RESOURCES

Report: Integrating The Patient And Caregiver Voice Into Serious Illness Care

The National Academy Of Sciences, Engineering, And Medicine has published a proceedings of a workshop report based on discussions held during a public workshop. Panel topics included gaps and solutions for integrating patient, caregiver, and family voices into person-centered care delivery across all ages, diagnoses, and disciplines; addressing health equity, implementing a relationship-centered approach to addressing unique challenges (such as providing team-based perinatal and neonatal care for seriously ill infants and their families); and more. To read the report, click here.

Immigrant Resource Toolkit For Families Of Children With Special Health Care Needs

This toolkit from Family Voices is a collection of documents designed to inform, empower, and assist families of children and youth with special health care needs and the professionals who support them in the event of an emergent immigration situation. Additionally, the toolkit contains supporting documentation that reflects the extent of potential hardship a child with special needs may face if their caregiver is detained or removed. To access the toolkit, click here.

CALL FOR PARTICIPANTS

Researchers At San Jose State University Recruiting For Study, Summer Camp

The Department Of Kinesiology at San Jose State University (SJSU) is looking to better understand how exercise can serve as a form of intervention for children with autism. For more information on the below studies, email Professor Areum Jensen at aruem.jensen@sjsu.edu.

Basic neural mechanism research: this ongoing study seeks to understand the relationship between brain activity and the cardiovascular system in children with autism (any age). The study would take 2.5 hours and be conducted in SJSU’s exercise laboratory.

Spartan Youth Summer Camp: this camp is open to both typically developing children and those with autism (ages 7-13). Activities will center around fun physical activities such as basketball, judo, and table tennis. June 18th – August 10th (Monday – Friday). 9:30am – 2:30pm at the SJSU campus.

WEBINARS

Archived Webinar: Understanding California’s Regional Centers: From Yesterday To Today And Tomorrow

Hosted by: Family Voices Of California

Recording and slides here.

December 12: Universal Accessibility, Emergency Preparedness, And Disaster Response

Hosted by: The Mid-Atlantic ADA Center

More information and registration here.

December 13: Aging And Intellectual/Developmental Disabilities: Planning For Growing Older

Hosted by: The Arc

More information and registration here.

December 14: Preparing For The New Year: Standing On Top Of The (Paper) Mountain

Hosted by: The Johnson Center For Child And Health Development

More information and registration here.

December 19: Value-Based Payment Strategies For Patients With Complex Health And Social Needs

Hosted by: Institute For Healthcare Improvement

More information and registration here.

January 10: Stress and Gastrointestinal Issues In Children With Autism

Hosted by: Autism Research Institute

More information and registration here.

January 24: You Shouldn’t Have To Be A Rocket Scientist To Access Services For Kids With Disabilities

Hosted by: Family Voices Of California

More information and registration here.

January 24: Adaptive Automotive Equipment Options For People With Spinal Cord Injuries

Hosted by: United Spinal Association

More information and registration here.

ARTICLES

Nothing About Us Without Us (Family Voices National blog published in the American Academy Of Pediatrics journal)

CDC Says Developmental Disabilities Are On The Rise

With Teen Mental Health Deteriorating Over Five Years, There’s A Likely Culprit

California Could Lose $2.7 Billion In Kids’ Health Funding – And There’s No Backup Plan

The Damage To Children’s Health Insurance Is Already Being Done

A Week Of Obesity Predictions Paints Dire Health Future For Today’s Kids

For Children With Autism, Zip Code Matters

Family Caregivers/Respite, Health Summit, & Tax Bill Advocacy

This newsletter was sent November 21, 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.

Don’t forget to register for our Nov. 29 webinar, Understanding California’s Regional Centers: From Yesterday To Today And Tomorrow. For more information, click here.

The Family Voices of California 16th annual Health Summit & Legislative Day is quickly approaching! This conference brings together families, providers, policymakers, state agencies, advocates, and more who are eager to improve services and systems of care for children and youth with special health care needs.

Panel topics will cover Medi-Cal updates, mental health, family engagement, California Children’s Services, and more. Additionally, there will be a separate track where youth and young adults with disabilities can learn and network in a parent-free space.

To read the 2017 Health Summit Highlights Report, click here.

To register for the 2018 Health Summit, click here (free for families, $50 suggested donation for professionals). Space is limited. See you there!

November: National Family Caregivers Month

The ARCH National Respite Network has developed a new set of resources, Charting The LifeCourse Respite Tools, to help caregivers understand the meaning of respite, learn from real life examples, and create a respite plan that enhances the lives of all family members. If you’re a family caregiver of a child or adult with a disability, chronic condition, or functional limitation (or a professional who works with family caregivers), you can register for a Dec. 7 webinar to learn how to best utilize these tools.

To browse the new respite toolkit, click here. To register for the informational webinar, click here.

Also seeour Q&A with Sherri, primary caregiver and care coordinator for daughter, Lauren.

STOP THE TAX BILL

Republican legislation aimed at enacting a sweeping $1.5 trillion in tax cuts has passed the House and now awaits a Senate vote after the holiday recess.

This legislation is detrimental to families of children and youth with special health care needs. In order to fund the massive tax cuts, the bill would:

Eliminate the Affordable Care Act individual mandate. This mandate makes it possible to ban health insurance companies from discriminating against people with preexisting conditions and keeps the insurance markets stable and functional.

Eliminate the medical tax break. This tax break allows individuals to deduct medical expenses that exceed 10 percent of their total income and helps families who are struggling to cover the enormous cost of raising a child with a disability.

The overall impact: an estimated 13 million people would lose coverage by 2025.

Call (866) 426-2631 to enter your zip code and get connected to your senators. The message: “Oppose any tax package that creates a deficit or decreases the number of people with health care coverage!”

RESOURCES

Fact Sheet: Addressing Culturally Competent Care For Children With Special Needs

The National Center For Medical Home Implementation has created a fact sheet with practical tips on addressing culturally competent care for children and youth with special health care needs. The fact sheet includes tactics for practices, clinicians, and state and community-based organizations. To read, click here.

Child Neurology Foundation Launches New Transition Of Care Website Section

The Child Neurology Foundation has created a new website section with information on transitioning patients from a child neurologist to an adult neurologist. The resources are for providers and families and include videos, self-assessment forms, plans of care, medical summaries, transfer letter samples, comic books, and more. To browse the new section, click here.

WEBINARS

November 27: Leveraging Medicaid Quality Metrics To Improve Care For Children And Youth With Chronic And Complex Health Care Needs

Hosted by: National Academy For State Health Policy & the Lucile Packard Foundation For Children’s Health

More information and registration here.

November 28: Communicating With Health Care Providers

Hosted by: Autism Research Institute

More information and registration here.

November 28: Crisis Intervention Services For Individuals With Disabilities

Hosted by: American Association On Intellectual And Developmental Disabilities

More information and registration here.

November 28: Demystifying Telehealth

Hosted by: Health Information Technology, Evaluation, And Quality Center

More information and registration here.

November 28: Safe And Effective Pharmacological Tobacco Cessation Supports For Individuals With Behavioral Health Conditions

Hosted by: National Behavioral Health Network For Tobacco & Cancer Control

More information and registration here.

November 29: Understanding California’s Regional Centers: From Yesterday To Today And Tomorrow

Hosted by: Family Voices of California

More information and registration here.

November 30: Pooled Special Needs Trust Planning: What Families Need To Know

Hosted by: United Spinal Association

More information and registration here.

December 6: The Role Of Title V Programs And Value-Based Purchasing For Children And Youth With Special Health Care Needs

Hosted by: The American Academy Of Pediatrics & The Catalyst Center

More information and registration here.

December 14: Preparing For The New Year: Standing On Top Of The (Paper) Mountain

Hosted by: The Johnson Center For Child And Health Development

More information and registration here.

ARTICLES

Resource E-Blast From Family Voices National

New Film Introduces World To Berkeley’s Disability Rights Pioneer Hale Zukas

Almost All Students With Disabilities Are Capable Of Graduating. Here’s Why They Don’t

Ending Medical Tax Break Could Be A ‘Gut Punch’ To The Middle Class

House Tax Plan Would Eliminate Medical Expense Deduction

School-Based Health Centers, Depression, And Suicide Risk Among Adolescents

Changing Lives By Better Recognizing Children With Fetal Alcohol Exposure

 

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