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

 

Call NOW To Stop The Tax Bill!

Earlier this month, Republican lawmakers introduced partisan legislation aimed at enacting a sweeping $1.5 trillion in tax cuts for businesses and individuals.

In reality, this bill is detrimental for many as it eliminates the Affordable Care Act (ACA) individual mandate. This mandate makes it possible to ban health insurance companies from discriminating against people with preexisting conditions while keeping the insurance markets stable and functional.

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

The House successfully passed the tax overhaul yesterday, and it now awaits a Senate vote. 

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!”

Also see:

Under The G.O.P. Tax Plan, Who Would Win And Lose?

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

Regional Center Webinar, New CYSHCN Website, & Open Enrollment Resources

This newsletter was sent November 7, 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.

Save the date: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26-Feb. 27, 2018 in Sacramento. More information and registration here.

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

Date & Time: Nov. 29 / 12 p.m – 1 p.m.

Hosted by: Family Voices of California

California is home to 21 regional centers throughout the state that serve more than 300,000 individuals with developmental disabilities and their families. This webinar will delve into the history of the regional center system, its current status, and issues that will shape the future. Additionally, attendees will learn what sets California’s service system apart from other states as well as how federal funding shapes its operation today. Webinar presenter Amy Westling is the executive director of the Association Of Regional Center Agencies (ARCA) which represents all California regional centers.

To register, click here.

Having Trouble Finding Nursing? Golden Gate Regional Center Wants To Know

The Health Care Impact Team at Disability Rights California is looking for families who have been impacted by the nursing shortage. If you’ve had trouble finding a nurse for your child through EPSDT or a home health agency, please contact Karis Draggs, the Client’s Rights Advocate at Golden Gate Regional Center. Email: karis.daggs@disabilityrightsca.org

RESOURCES

New Website On National Standards Of Care For Children And Youth With Special Health Care Needs

The Association For Maternal And Child Health Programs has launched a new website devoted to easily navigating the National Standards 2.0, a comprehensive set of system standards that can be used or adapted by various systems and organizations that serve children and youth with special needs. To view the new website, click here, and to watch an introduction video, click here.

CDC Introduces Developmental Milestone Tracker App

The Centers For Disease Control And Prevention has released a free app designed to help parents understand when their kids should be hitting developmental benchmarks. It includes checklists with photos and videos detailing important milestones for kids 2 months to 5 years old as well as information on when to contact a doctor about potential issues. For more information, click here, and to register for a Nov. 29 webinar on how to best use the app, click here.

Children’s Health Insurance Program (CHIP) Renewal Update, Advocacy Resources

On Friday, the House voted to reauthorize federal funding for CHIP for five years and extend community health center funding for two (H.R. 3921). However, advocates are concerned with the House cutting billions from the ACA’s Public Health And Prevention Fund to supply CHIP funding. CHIP reauthorization now requires a 60 member vote in the Senate, and current funding is set to expire early January 2018. Use the below resources to urge Congress to act:

Advocacy resources from Health4AllKids

Advocacy toolkit from the American Academy Of Pediatrics

Related: Children’s Health Bill Clears House As State Struggles To Keep Programs Afloat

OPEN ENROLLMENT INFO

Enrollment for health insurance under the Affordable Care Act is currently open and will close Jan. 31, 2018. The window for signing up is much shorter than in years past, and there will be less on-the-ground assistance to help consumers navigate registration. Here are some helpful resources as you begin to browse the marketplace.

An open enrollment toolkit (from Get America Covered)

A disability guide for health care insurance marketplace navigators (from National Disability Navigator Resource Collaborative)

Topical and population-specific fact sheets (from National Disability Navigator Resource Collaborative)

Facebook live recording on what you need to know for ACA sign up season (from Kaiser Health News)

Five things to know about the ACA in year five (Kaiser Health News)

Slides from a webinar presentation on ACA enrollment (from National Disability Navigator Resource Collaborative)

An interactive map on how premiums are changing in 2018 (from the Kaiser Family Foundation)

2018 health insurance marketplace calculator (from Kaiser Family Foundation)

WEBINARS

Recording: Retrofitting The Medical Home For Children With Special Health Care Needs

Hosted by: Family Voices Of California

Recording and slides here.

Recording: Communicating With Your Kids: Sexuality And Developmental Disabilities

Hosted by: Family Voices Of California

Recording and slides here.

November 9: Medicaid And ABLE: A Look At The Recently Released CMS Guidance

Hosted by: National Disability Institute

More information and registration here.

November 14: Public Health Grand Rounds: Meeting The Challenges Of Measuring And Preventing Maternal Mortality In The United States

Hosted by: Centers For Disease Control And Prevention

More information and registration here.

November 15: Addressing Symptoms Of PANS And Pots Naturally

Hosted by: Autism Research Institute

More information and registration here.

November 16: Serving Children And Youth With Special Health Care Needs In Medicaid Managed Care: Contract Language And The Contracting Process

Hosted by: Association Of Maternal And Child Health Programs and National Academy for State Health Policy

More information and registration here.

November 16: Youth On Changing Culture For Non-Visible Disabilities

Hosted by: Canadian Hard Of Hearing Association

More information and registration here.

November 17: Sudden Unexpected Death In Epilepsy (SUDEP)

Hosted by: Child Neurology Foundation

More information and registration here.

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

More information and registration here.

November 28: Communicating With Health Care Providers

Hosted by: Autism Research Institute

More information and registration here.

ARTICLES

Complex Child November Edition: Emergenices

Trump GOP Tax Bill Will Result In Massive Cuts To Health Care

To Mend A Birth Defect, Surgeons Operate On The Patient Within The Patient

Annual Contributions To ABLE Accounts Increased To $15,000 In 2018

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

Marin Lags Among Counties In Providing Eye Care To Low-Income Children

Sickle Cell Patients Suffer Discrimination, Poor Care, And Shorter Lives

Fighting Chronic Disease Starts With Better Pediatric Care

When Health Reform Resurfaces, Don’t Let Special Needs Children Get Lost In The Shuffle

For My Son With Disabilities, The Joy Of Trick-Or-Treating With A Buddy

Kids’ Allergies, Especially To Peanuts, Are On Rise

Preterm Births Up, Says March Of Dimes

My ‘Orphan Disease’ Has Given Me A New Family

Lead Poisoning Has Decreased, But Disparities Remain

San Jose: A Youth Psych Center At Valley Medical Center?

New CYSHCN Systems of Care Brief, Project Leadership Update, & Medical Home Webinar

This newsletter was sent October 24, 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.

Save the date: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26-Feb. 27, 2018 in Sacramento. More information and registration here.

Project Leadership Training-of-Trainers

Family Voices of California facilitated its Project Leadership Training-of-Trainers Workshop in San Francisco Oct. 11-13. The workshop prepares participants to implement the Project Leadership mentorship training to parents and caregivers of children and youth with special health care needs. Participants learned best practices for implementing the training as well as potential budgeting and funding options. Thirteen representatives from nine agencies were in attendance. For the first time, Family Voices opened the workshop to out-of-state agencies and welcomed participants from Hawaii, Oregon, and Montana. The next Project Leadership Training-of-Trainers workshop will be held Nov. 29-30 in Los Angeles (registration full). To learn more about Project Leadership, click here or email Allison Gray at agray@familyvoicesofca.org.

EVENTS

Lucile Packard Children’s Hospital Stanford To Hold Family-Friendly Open House

The Lucile Packard Children’s Hospital Stanford is running three tours of their new hospital in anticipation of its grand opening. During the 45-minute tours, guides will share highlights of the new space while kids participate in a trick-or-treat adventure. Oct. 27-29 / Palo Alto / times vary. To register, click here

Workshop: Coping With The Diagnosis Of Severe Food Allergies

Food Allergy Research And Education is partnering with Stanford University to host a two hour workshop on the often overlooked aspect of a food allergy diagnosis: the emotional toll. A panel of experts will offer personal and professional experience in supporting parents, families, and children with food allergies. Nov. 8 / Palo Alto / 7-9 p.m. To register, click here.

RESOURCES

Resources And Policy Options: Improving Systems Of Care For Children With Special Health Needs

The National Conference Of State Legislators published a new brief outlining programs, funding options, standards, data, state approaches, and policy options that states have used or may consider to improve systems of care for children and youth with special health care needs (CYSHCN) and their families. Report findings also indicate that families of CYSHCN have a variety of needs that extend beyond financial concerns including assistance navigating services, accessing a medical home, education and training, and/or appointment transportation. To read the report, click here

Study: Black, Hispanic Children With Developmental Delays Less Likely To Receive Early Intervention Services

A new study from the American Academy Of Pediatrics found that fewer than 25 percent of children eligible for early intervention services use them, and that black and Hispanic kids are much less likely to be identified as needing services than white children. Researchers interviewed 22 mothers to explore how maternal health beliefs influenced their decision to seek help for developmental delays. Black and Hispanic mothers often reported feeling pressured into using services rather than perceiving services as beneficial. To read the study, click here.

Report: The New Importance Of Children In America

The Lucile Packard Foundation For Children’s Health (LPFCH) released a new report emphasizing that all children  regardless of gender, ethnicity, geographic residence, or economic background   are critically important to the future sustainability of our economy. The report acknowledges that the aging, retiring Baby Boomer generation combined with low birth rates could create a shortage of children who would otherwise enter the workforce and pay taxes. In addition, the report calls for heavier investment in children in order to maximize their capabilities and future earning power. To read the report, click here, and to listen to a short interview with Dr. David Alexander, CEO of LPFCH about its findings, click here

WEBINARS

October 25: Retrofitting The Medical Home For Children With Special Health Care Needs

Hosted by: Family Voices Of California

More information and registration here.

October 25: Equity In School Funding: A Webinar For Local Community Groups And Education Leaders

Hosted by: Children Now

More information and registration here.

October 26: Positive Psychology, Mindfulness, And Prevention In Children’s Mental Health

Hosted by: Idaho Federation Of Families For Children’s Mental Health

More information and registration here.

October 30: Implementing Trauma-Informed Care Into Organizational Culture And Practice

Hosted by: Center For Health Care Strategies

More information and registration here.

November 1: Communicating With Your Kids: Sexuality And Developmental Disabilities 

Hosted by: Family Voices Of California

More information and registration here.

November 2: Fetal Alcohol Syndrome Disorder Advocacy: Setting The Stage For 2018

Hosted by: National Organization On Fetal Alcohol Syndrome

More information and registration here.

November 7: ADHD: What Is It, Who Has It, And What To Do About It?

Hosted by: Autism Research Institute

More information and registration here.

November 15: Addressing Symptoms Of PANS And POTS Nutritionally

Hosted by: Autism Research Institute

More information and registration here.

ARTICLES

New Blood Pressure Guidelines For Children

Autism Insurance Mandates Boost Access To Care, Study Says

Why Are More American Teenagers Than Ever Suffering From Severe Anxiety?

Tightening The Leash On Fake Service Animals

One Nurse Per 4,000 Pupils = Not The Healthiest Arrangement

Trial Set In LA Disabled Students’ Suit Alleging Community College Blocked Their Education

Target, Tommy Hilfiger Expand Adaptive Clothing Lines

Governor Signs Three Key Bills For Children

Sexuality & Disability Webinar, Transition Resources, & Disaster Preparedness

This newsletter was sent October 10, 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.

Save the date: Family Voices of California’s 16th annual Health Summit & Legislative Day will be held Feb. 26 – Feb. 27, 2018 in Sacramento. More information and registration here.

Communicating With Your Kids: Sexuality And Developmental Disabilities Webinar

Family Voices of California will host a Nov. 1st webinar aimed at helping parents of children with disabilities discuss sexuality. Additionally, attendees will have the opportunity to practice direct communication skills. Our presenter, Katherine McLaughlin, M.Ed, has 25 years of expertise in offering disability and sexuality courses to both parents and professionals. For more information registration, click here.

RESOURCES

New Quiz For Youth, Young Adults: Are You Ready To Transition To Adult Health Care?

In partnership with their National Young Adult Transition Advisory Group, Got Transition has created a transition quiz to assess the readiness levels of youth and young adults who are preparing to move to adult care. The quiz asks about important issues surrounding the transition years and provides guidance on topics such as what legal changes happen at 18 years old and how to sign up for health insurance. To take the quiz, click here.

Other helpful transition resources:

Got Transition’s new systematic review: “Outcome Evidence For Structured Pediatric To Adult Health Care Transition Interventions

The Department Of Health And Human Service’s August report to Congress: “Young Adults And Transitioning Youth With Autism Spectrum Disorder” (related Disability Scoop article here)

Exceptional Parent’s article on transitioning to adult neurological care

The American Academy Of Pediatrics and Got Transition’s new ECHO project to help professionals learn how to better transition youth to adult care

The Department Of Education’s updated “Transition Guide To Postsecondary Education And Employment For Students And Youth With Disabilities

American Red Cross Disaster Preparedness Guide For People With Disabilities

This comprehensive guide was designed to help people with physical, visual, auditory, or cognitive disabilities prepare for natural disasters and their consequences. The handbook contains printable checklists, disaster care plans, disaster kit essentials, and how to complete a personal assessment. To check it out, click here.

Also see:

Seattle Children’s emergency preparedness website section for children with special needs

Tip sheets on coping, stress, and trauma following natural disasters

WEBINARS

October 16: Implementing Trauma-Informed Care In Pediatric And Adult Primary Care Settings

Hosted by: Center For Health Care Strategies

More information and registration here.

October 18: Zika Virus And Your Eyes 

Hosted by: Prevent Blindness

More information and registration here.

Also see: Zika Care Connect, a new website that connects pregnant women, parents, and caregivers of infants/families affected by Zika to specialized care.

October 24: Making The Most Of Financial Assistance To Pay For Therapy And Support

Hosted by: The Johnson Center For Child Health And Development

More information and registration here.

October 24: Family-Centered Care And Conversation Techniques

Hosted by: The STAR Center

More information and registration here.

October 26: Eliminating Restrictive Practices: Alternative Approach To Managing Physically Aggressive Behavior Without Restraint Or Seclusion

Hosted by: SF Autism Society

More information and registration here.

October 27: Exploring A Community-Based Peer-To-Peer Approach To Mental Health And Wellness 

Hosted by: Vermont Family Network

More information and registration here.

November 7: ADHD: What Is It, Who Has It, And What To Do About It?

Hosted by: Autism Research Institute

More information and registration here.

ARTICLES

Nowhere To Go: Young People With Severe Autism Languish In Hospitals

For Foster Parents Of Disabled Children, Money Stays Tight

Learning To Breathe

Arresting Disabled Bodies

Complex Child October Edition: Allergies And Intolerances

Fighting For Breath: Access To Oxygen Therapy Should Not Be A Matter Of Location Or Luck

For Children With Severe Anxiety, Drugs Plus Therapy Help Best

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