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 see: our 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

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

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?

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

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

This mailing was sent September 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.

Even more detrimental to the disability community than previous Affordable Care Act repeal efforts, the Graham-Cassidy bill threatens to “significantly reduce coverage for people with disabilities, violate their right to live in the community, and undermine decades of state and federal initiatives to rebalance Medicaid spending toward community-based care” (via NHeLP).

To see how the Graham-Cassidy bill would specifically impact California, click here.

The below California Representatives need to hear from you this week to ensure the bill does not pass. Use these talking points to briefly state how the proposed legislation hurts people with disabilities across the board. 

Rep. Jeff Denham (CA-10): (202) 225-4540

Rep. Darrell Issa (CA-49): (202) 225-3906

Rep. Steve Knight (CA-25): (202) 225-1956

Rep. Dana Rohrabacher (CA-48): (202) 225-2415

Rep. Ed Royce (CA-39): (202) 225-4111

Rep. David Valadao (CA-21): (202) 225-4695

Rep. Mimi Walters (CA-45): (202) 225-5611

This mailing was sent September 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.

This newsletter was sent September 12, 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.

September Is Fetal Alcohol Spectrum Disorders Awareness Month

The month of September has been designated as Fetal Alcohol Spectrum Disorders Awareness Month. Both the American Academy Of Pediatrics and the National Organization On Fetal Alcohol Syndrome have released toolkits to help raise awareness, promote surveillance and screening and ensure all affected children receive appropriate and timely interventions. The toolkits also include social media tools and resources for connecting with local events. AAP Toolkit here / NOFAS Toolkit here.

RESOURCES

Phone App Round-Up: Useful Tools For Managing Health Care At Your Fingertips

HydroAssist: allows you to record, store and access your entire hydrocephalus treatment history. Designed for both patients and caregivers. More information here.

Epilepsy Tool Kit: key features include a seizure diary, the ability to export information directly to your doctor and automatic medication reminders. More information here.

Also see: Professionals Epilepsy Manual app.

Spine Screen: this app allows parents to monitor their child’s spine by scanning for abnormal curves. Developed by doctors at Shriners Hospital in Sacramento. More information here.

My Medical ($4.99): this app provides a platform for tracking general health information for your entire family. More information here.

Family Media Plan Creator: This website allows parents to create a personalized family media plan that prioritizes thoughtful media use alongside face-to-face interaction, family time, exercise and downtime. Developed by the American Academy Of Pediatrics. More information here.

Issue Brief: Access To Mental Health Services for Children With Special Health Care Needs

The National Health Law Program recently released a new issue brief discussing findings from a 2016 survey of service providers for children with special health care needs (CSHCN). The survey identified mental health care and counseling as the most difficult services for CSHCN in California to access. The issue brief includes stakeholder input on ways to improve access to mental health services for CSHCN, with a particular focus on legal interventions. To read the issue brief, click here.

OPPORTUNITY FOR INPUT

NICU Parent Symposium Scheduled For Next Month Near Sacramento

The NICU (Neonatal Intensive Care Unit) Family Alliance is hosting a free conference for parents of children who are in, or have been in, the NICU. Attendees will learn about available resources, exchange ideas and meet other parents within the NICU community. The day will feature multiple panel discussions and cover topics such as how to cultivate communication to ensure better care and continuity of care while transitioning your child home. For more information and to register (free), click here.

WEBINARS

September 13: The Children’s Health Insurance Program: What’s Next?

Hosted by: National Conference Of State Legislators

More information and registration here (you must create a free account to register).

September 19: Health Literacy Vs. The Lookup Generation 

Hosted by: The University Of Minnesota

More information and registration here.

September 20: Meaningful Family Engagement From Early Childhood To High School

Hosted by: The National Resource Center For Mental Health Promotion And Youth Violence Prevention

More information and registration here.

September 20: PANDAS And Autism Spectrum Disorder

Hosted by: Autism Research Institute

More information and registration here.

September 22: Navigating Care Choices: How To Help Consumers Shop For Value

Hosted by: The National Institute For Health Care Management Foundation

More information and registration here.

September 26: Aging And Disability: Planning For Growing Older

Hosted by: The Arc

More information and registration here.

September 26: Tantrums, Meltdowns, And Outbursts, Oh My! Strategies For Helping Your Child Cope During Overwhelming Situations

Hosted by: Autism Research Institute

More information and registration here.

September 28: Policing People With Disabilities: A Call For Procedural Justice

Hosted by: The Arc

More information and registration here.

ARTICLES

Complex Child: Organization And Preparation Edition

Babies’ Race Affects Quality Of Care In California Neonatal Intensive Care, Study Says

Google Glass Is Back – As A Tool to Coach Autistic Children, Train Doctors, And More

Harvey Brings Unique Challenges For Those With Disabilities

Feds Award Millions For Autism Research

Blue-Tag Abuse: Disabled-Placard Cheaters Work The Angles

Framing Health Care As A Civil Right

Neonatal Facilities Increasingly Use Donated Breast Milk To Save Premature Babies

AAP: Characteristics Of Children Enrolled In Medicaid With High-Frequency Emergency Department Use

Congress’ Tight Timetable Complicates Renewal Of Children’s Health Plan

Space For Families to Stay Together: New Patient Rooms At Stanford Children’s

Photography: Nathan Phillips | Words: Elana Ford

Our family was blessed with the birth of our son, Gideon, in the spring of 2013. After a blissful two days, his health began to decline. First, he was categorized as failure to thrive when he had trouble eating and gaining weight. At 4 months old, he experienced a sudden loss of all milestones, leaving him seemingly deaf, blind and unable to lift his head. Soon later, mysterious seizures began.

Gideon was eventually diagnosed with West Syndrome, a form of infantile epilepsy with a terrifying prognosis. Medical literature commonly refers to it as ‘the catastrophic diagnosis’ due to the impact it has on quality of life. Gideon has since undergone six brain surgeries as we’ve struggled to control his seizures and remedy the ramifications of injuries sustained during his initial surgery. Unfortunately, parents of children with epilepsy are often forced to choose between two evils: ongoing seizures or an inevitable disability as a result of brain matter removed during surgery.

These photographs document the days before, during and after Gideon’s fourth surgery where a bio-plastic plate was inserted and meshed with his skull to replace a section of bone that was lost to infection one-year prior.

A lot has changed for our family since these photographs were taken. Gideon’s had two more brain surgeries – one for hydrocephalus and one to address the return of his seizures. This latter surgery has been nothing short of miraculous: since he was discharged in May, he’s started talking, making eye contact and rapidly increasing his fine and gross motor skills. Although he’s still g-tube fed, he takes a few less medications each day.

Unfortunately, there have been difficult changes as well. Gideon’s father and I are no longer together and we’re working to co-parent in a system that’s not set up for marital separation.  Also, Lilah has been struggling with her own disability challenges that include an increase in the severity of her eating disorder as well as general anxiety.

Both of my children’s care teams work hard on a daily basis, but a lot of ambiguity remains about what the future holds. For now, we all try to remember that what doesn’t get done today can always be done tomorrow.

This newsletter was sent August 29, 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.

REMINDER: Take our California Children’s Services survey here.

Family Voices of California has created a website section devoted to highlighting the outstanding and ongoing work our Project Leadership graduates are involved in. The Project Leadership program  is a parent advocacy training whose overall goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Graduates have gone on to join family advisory councils, initiate and pass legislation, write op-eds and much more.

To check out Project Leadership In Action, click here.

RESOURCES

Updated Policy: Age For Transition To Adult Care Should Be Based On Individual Needs

The American Academy Of Pediatrics no longer recommends “arbitrary age limits on pediatric health care” and states the age of transition should be left to patients and pediatricians. The policy acknowledges, among other factors, the growing number of children with special health care needs surviving into adulthood whose only access to specialized services is through their pediatricians. To read the policy, click here.

Kidsdata.org Launches ‘Health Status’ Topic

Kidsdata.org houses varying levels of data on the health and well-being of children in communities across California. Their newest topic, ‘health status,’ provides information on whether a child’s health is fair/poor, good or excellent/very good. Results can be viewed for all of California (pictured on right), by individual county, and by race/ethnicity or family income level. For more information, click here.

Related: Use Kidsdata? Take their survey here.

OPPORTUNITY FOR INPUT

Survey Seeks Input From Siblings Of Children With Disabilities

The Center For Family Involvement is interested in learning how to better support siblings of children and youth with disabilities. Survey results will help inform the creation of future resources and projects. To access the questions, click here.

Losing Anthem/Cigna Coverage? Health Access California Wants To Hear From You

Anthem Blue Cross and Cigna will stop offering health insurance for most of the California individual market beginning next year. Coverage through Medicare, Medicaid and employers will remain unchanged. Over 300,000 people will need to switch plans, and some may face problems if currently in the middle of a course of treatment. Health Access California is advocating for continuity of care protections and seeking feedback from consumers who will be impacted by this change. To take the survey, click here.

Rally TOMORROW For AB 279: Regional Center Employee Wage Reimbursement

Assemblymember Chris Holden is organizing a public rally in support of his bill, AB 279, on the south steps of the State Capitol tomorrow at 10 a.m. The bill aims to preserve vital services for people with disabilities as regional centers in some of California’s largest cities are in danger of closing because the state won’t reimburse them for paying employees the locally mandated minimum wage. AB 279 would ensure these service organizations receive employee wage reimbursements. For more information, contact Naima Ford at naima.ford@asm.ca.gov

‘Bounce Out The Stigma’ Epilepsy Basketball Camps In Sacramento, Bay Area

The Epilepsy Foundation of Northern California is hosting two upcoming basketball camps for children with epilepsy 7-17 years old. The camps are four hours long and will be led by “Mighty” Mike Simmel, a former Harlem Wizards player who also has epilepsy. Tuition is $25. For more information on the Sacramento and Bay Area camps, click here.

WEBINARS

Archived Webinar: Medi-Cal Services For Children And Youth With Autism And The Family-Focused Model Of Care

Hosted by: Family Voices Of California

Recording and slides here.

August 31: Celebrating 20 Years Of The Children’s Health Insurance Program (CHIP) And Looking Ahead

Hosted by: National Academy For State Health Policy

More information and registration here.

August 31: Fostering Family Engagement And Leadership In Early Hearing Detection And Intervention (EHDI) Systems

Hosted by: National Center For Hearing Assessment And Management

More information and registration here.

September 5: Promoting Skills To Survive And Thrive In The Teen And Adult Years

Hosted by: Global Down Syndrome Foundation

More information and registration here. ($10)

September 5: Coding For Sickle Cell Disease

Hosted by: American Society Of Hematology

More information and registration here.

September 5: Beyond The Basics: The Impact Of Zika Virus On Vision And Hearing

Hosted by: American Academy Of Pediatrics

More information and registration here.

September 6: Early Childhood Screening And Surveillance

Hosted by: American Academy Of Pediatrics Star Center

More information and registration here.

September 14: What Parents Need To Know About Quality Inclusion For All Children 

Hosted by: Statewide Parent Advocacy Network

More information and registration here.

September 14: The Gut Microbiome And Autism

Hosted by: The Johnson Center For Child And Health Development

More information and registration here.

ARTICLES

Health Care Improvement In Stockton, California: Collaboration, Capacity-Building, And Medicaid Expansion

Target Unveils Clothing For Kids With Special Needs

Probiotic Bacteria Could Protect Newborns From Deadly Infection

Single Mom ‘Fighting So Hard” For Medically Fragile Child

When Those With Autism Age Out, What’s Next?

Children’s Hospital Colorado Preparing 25 New Cancer Trials After “Breakthrough” Law Signed

Bill Proposes Caps On How Long Mentally Incompetent Youth Spend In Juvenile Hall

Telehealth: A “Glimmer Of Hope” On Health Care Front

In-Home Nursing Care Still Lacking For Sick Kids

Mapping Out The Causes Of Suicide In Teenagers And Children

Med-Cal Gets A Bad Rap (response to July Wall Street Journal article)

Kids Find Breathing Room At Asthma Camp

Robotic Exoskeletons Show Promise As Tool to Help Kids With Cerebral Palsy Walk Easier