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:


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


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)


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.


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?

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