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

This newsletter was sent Aug. 15, 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.

Reminder: Does your child receive California Children’s Services (CCS) in a county scheduled for transfer to Medi-Cal managed care plans in 2018? Find out more and take our survey here.

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

Family Voices of California will host a webinar on Aug. 23 detailing the available Medi-Cal services for children with autism, the process for getting these services and the proposed family focused model of care. Our webinar presenter is Dr. Clayton Chau, Regional Executive Medical Director at the Mental Health Network, St. Joseph Hoag Health/Providence Health System.

To register for the webinar, click here.

Reminder: Submit Your Project Leadership Training-of-Trainers RFA By September 1

Family Voices of California is extending an invitation to California organizations serving families of children with special needs to send one representative to a two-day Project Leadership Training-of-Trainers workshop in San Francisco (Oct. 2017) or Los Angeles (Nov. 2017).

Project Leadership 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. Funding is provided by the Lucile Packard Foundation for Children’s Health.

Note: Participating organizations will receive a $500 stipend to offset travel cost.

To review the request for application, click here.

To watch the informational webinar, click here.

RESOURCES

Create A Personalized Well-Visit Planner

The Well Visit Planner website allows parents to create custom guides for upcoming well-care appointments that are based on national recommendations. The guides are created by combining key issues and top priorities specific to each family and are intended for use with children 4 months to 6 years old. To begin the questionnaire and create your own well-visit planner, click here.

Pediatric Primary Care-Specialist Interface: A Call For Action

This new article from The Journal of Pediatrics presents key issues related to the primary care and subspecialty interface in the context of the family-centered medical home model. It reviews recent trends in health care delivery that create the imperative for better collaboration between primary and subspecialty medical care for children with complex special needs, as well as acute and chronic conditions. To read the article, click here.

OPPORTUNITY FOR INPUT

Highlight A Promising Practice Or Innovative Model Related To Pediatric Medical Home Implementation

The National Center for Medical Home Implementation (NCMHI) is collecting promising practices and innovative models related to pediatric medical home implementation. All clinicians, practices, family organizations, community-based organizations, state agencies and other stakeholders are encouraged to apply. Applications will be reviewed by a panel and selected entries will be published on NCMHI’s website. For more information, click here.

WEBINARS

August 16: Mental Health Parity: Ensuring Equal Access to Treatment For Children And Youth In California

Hosted by: Family Voices Of California

More information and registration here.

August 16: Success Stories: Implementing Behavioral Health In A Speciality Care Setting

Hosted by: SAMHSA-HRSA Center For Integrated Health Solutions

More information and registration here.

August 16: Introduction To NFSN’s Parent Advisory Committee Training And The Standards Of Quality For Family Strengthening And Support

Hosted by: National Family Support Network

More information and registration here.

August 17: Autism And Developmental Disability Housing In California: An Overview

Hosted by: SF Autism Society

More information and registration here.

August 21: Best Practices For Inclusion

Hosted by: Family Network On Disabilities

More information and registration here.

August 22: Toilet Training: Yes You Can!

Hosted by: Autism Research Institute

More information and registration here.

August 23: Medi-Cal Services For Children With Autism Spectrum Disorder And The Family Focused Model Of Care

Hosted by: Family Voices Of California

More information and registration here.

August 24: Care Coordination Approaches With Children And Youth With Special Health Care Needs And Their Families

Hosted by: Family Voices Of Minnesota

More information and registration here.

Archived Webinar: Advocacy And Wellness

Hosted by: Depression And Bipolar Support Alliance / Click here to watch

ARTICLES 

Complex Child August Edition: Therapies

DHCS Stakeholder Communications Update: August 2017

Why Is Our Existence As Human Beings Still Being Denied?

In Breakthrough, Scientists Edit A Dangerous Mutation From Genes In Human Embryos

Get Ready For The Next Big Health Care Fight. This One’s All About Kids

Report: Disability Remains Underrepresented In Movies

School Nurses Face Challenges Meeting Health Needs Of All Students

Drug Puts A $75,000 ‘Price Tag On Life’

Developmentally Disabled, And Going To College

Nowhere To Turn: California Children With Mental Illness Often End Up In ERs That Aren’t Equipped To Treat Them

Medi-Cal Recipients Still Fear For Their Lives

Can A Simple Diet Help Change These Children’s Lives?

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

Why Were A Little Girl’s Muscles As Weak As Noodles? The Answer Was Unexpected

For Parents Of Children Like Charlie Gard, Learning to ‘Redefine Hope’

What It’s Like To Raise A Child With A Terminal Illness In America

How Medicaid Made The American Dream Possible For Me

By Alison Beier, Eastern Los Angeles Family Resource Center Project Leadership graduate.

This piece is part of Project Leadership In Action, a series highlighting some of the outstanding work our graduates have been involved in.

Children’s Hospital Association held their 13^th annual Speak Now for Kids Family Advocacy Day in Washington, D.C. July 12-13. Our family, which includes 7-year-old Evan who has multiple congenital anomalies, was asked to represent UCLA Mattel Children’s at the event. Much like a Family Voices of California (FVCA) Health Summit & Legislative Day, we were prepped upon arrival for our meetings with legislators the following day. In fact, the entire legislative day mirrored our experience at FVCA’s Health Summit in Sacramento this February.

We were fortunate to meet with Democratic House Leader Nancy Pelosi, California State Senator Kamala Harris, and Congressman Tony Cárdenas (from California’s 29^th congressional district). We also met with staff from Congresswoman Lucille Roybal-Allard’s and Congressman Ted Lieu’s offices.

In our meetings, Evan and I told his story and explained the critical role Medicaid funding plays in our everyday lives. We touched on Regional Center funding and how Evan received speech, physical, and occupational therapies through their Early Intervention Services. We spoke of In-Home Supportive Services (IHSS) as I am Evan’s primary care provider through the program. Through IHSS, I am afforded the opportunity to be with my son 24-hours a day — no one is more attuned to him than myself. There have been specific instances where I, noticing a nuance in his behavior, have been able to get him the care he needs before it becomes a full-blown medical crisis. I believe the IHSS program has saved Evan’s life. In our meetings, we also spoke on the importance of mental health services being available for all, and what life was like before, and after, Evan was accepted into the Medi-Cal program. In short, we’re not bankrupt because we have Medi-Cal, but we easily could have been without it. Additionally, we advocated for the continuation of the Children’s Health Insurance Program (CHIP) funding, which is set to expire late September, and showed our support for the ACE Kids Act, which aims to improve care for children with medical complexity.

I covered most of the heavy stuff while Evan charmed whomever we spoke with.  He was quizzed on his state capitals (he knows them all), personally escorted to the House floor by Leader Pelosi, and then led back to the floor by Rep. Tony Cárdenas where he voted on an issue for the Congressman. At his last meeting of the day, Evan secured Senator Kamala Harris’ vote for his future presidential run and was even featured on her Facebook and Twitter pages later that evening. Everyone we spoke with thanked us for telling Evan’s story and explained that this is the most valuable contribution we can offer to the cause: boots-on-the-ground advocacy is where real change happens. We were told our story was eloquent, impactful, memorable, and we were encouraged to tell it often.

My experience with FVCA Project Leadership empowered me to confidently share our experiences. Having a working knowledge of how legislation is created enabled me to feel comfortable when speaking with our legislators. Learning how to effectively tell our story proved invaluable. Because of Project Leadership and Family Voices of California, Evan and I were fully equipped to be most effective advocates with our time in front of our representatives. We’re honored to have had the pleasure to represent all medically complex kids — a privilege we took to heart. Our time on The Hill was a dream come true. Thank you Family Voices of CA for preparing me for every moment of it.

This newsletter was sent Aug. 1, 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.

RFA Reminder: FVCA is inviting CA organizations serving families of children with special needs to send one representative to a Project Leadership Training-of-Trainers workshop in SF/LA. For more information, click here, and to register for an informational webinar, click here.

Reflections: ‘Disability Community Advocacy Made The Biggest Difference’

After a series of failed attempts to pass health care legislation aiming to dismantle the Affordable Care Act, Senate Republicans tried for a last-ditch effort entitled the Health Care Freedom Act, or ‘skinny repeal,’ on July 28. The bill was defeated 49-51. For an explanation of what the skinny repeal would have done, click here, and to read Family Voices’ statement on the outcome, click here.

This success wouldn’t have been possible without the tireless advocacy of so many who wrote, called, and visited to let Senators know why any bill involving Medi-Cal cuts would be detrimental to children and youth with special health care needs who depend on the program.  

Alison Barkoff, Director of Advocacy at the Center For Public Representation, shared her thoughts on the devoted work of the disability community during the past few months. To read her blog post, click here.

RESOURCES

Updated American Academy Of Pediatrics ‘Principles‘ Aims To Ensure Children Have Affordable Access To Quality Care

Originally published in 2010, the Principles Of Child Health Financing outlines how the design, financing and payment policies of a health care system can ensure children have access to universal coverage with quality, affordable health insurance that covers the full scope of essential pediatric benefits. The updated version now emphasizes that Medicaid and the Children’s Health Insurance Program are hard-won gains for children’s health care and should be upheld in any future legislation. To read the updated policy, click here.

New Tip Sheets On Improving Quality Of Care For Emergency Department Patients With Sickle Cell Disease

The National Center On Birth Defects And Developmental Disabilities has developed two new tip sheets focused on improving the quality of care for patients with sickle cell disease who visit the emergency department — a place where they often experience barriers to care. One tip sheet is for patients, and the other is for doctors.

Pediatric Symptom Checklist To Assess Emotional And Behavioral Problems

The Pediatric Symptom Checklist from Massachusetts General Hospital can be used by parents and pediatricians to assess how 4-16 year-olds are functioning in different settings. The screening can help families recognize potential behavioral problems so that appropriate interventions can be initiated as early as possible. To access the checklist, click here (available in multiple languages).

Related: videos from Talking Is Teaching on fostering social-emotional development in children

OPPORTUNITY FOR INPUT

Survey: Does Your Child Receive California Children’s Services (CCS) In A County Scheduled For Transfer To Medi-Cal Managed Care Plans?

Beginning next year, the Department of Health Care Services (DHCS) will transition kids currently enrolled in CCS in these 21 counties into Medi-Cal managed care plans to better integrate their care.

If your child receives CCS services in one of the above counties, FVCA invites to share your questions and concerns about the planned rollover so that we may assist you in this transition. 

To take our survey, click here (for Spanish, click here). For more information about the Whole Child Model click here, and for county-specific phase-in information click here.

Survey: Kidsdata Seeking Feedback On Website And Resources 

Kidsdata.org, a program of the Lucile Packard Foundation For Children’s Health that provides high-quality data on children in California, has created a survey to help inform their website and outreach activities. The questions should take an estimated 10 minutes to complete, and everyone who participates will be entered in a drawing to win one of five $50 Amazon gift cards. To take the survey, click here.

First 5 Contra Costa To Host Focus Group For African American Families

First 5 Contra Costa will be holding a focus group on Aug. 14 for African American families with young children to learn how the organization can provide better support and programs for this population. The meeting will take place from 6-8 p.m. in Concord. Dinner, child care and a $40 stipend will be provided. To register, call (925) 967-4709.

WEBINARS

August 2: Debunking Achieving A Better Life Experience (ABLE) Myths

Hosted by: National Disability Institute

More information and registration here.

August 3: Project Leadership Training-Of-Trainers RFA Informational Webinar

Hosted by: Family Voices Of California

More information and registration here.

Related: Learn more about Project Leadership Training-Of-Trainers here.

August 3: Autism And Epilepsy

Hosted by: American Autism Association

More information and registration here.

August 3: Integrating Oral Health Into Oregon’s Coordinated Care Model

Hosted by: National Academy For State Health Policy

More information and registration here.

August 7: Use Of Telepsychiatry To Improve Access To Care For Rural Populations

Hosted by: Association Of State And Territorial Health Officials

More information and registration here. 

August 8: Americans With Disabilities Act (ADA) Network Overview

Hosted by: National Information And Referral Support Center

More information and registration here. 

August 16: Mental Health Parity: Ensuring Equal Access To Treatment For Children

Hosted by: Family Voices Of California

More information and registration here.

Related: ‘What Is Mental Health Parity’ Infographic

August 23: Medi-Cal Services For Children With Autism Spectrum Disorder And The Family Focused Model Of Care

Hosted by: Family Voices Of California

More information and registration here.

Archived Webinar: Medicaid Undone? Covering The Safety Net’s New Future

ARTICLES

Disability Advocates Relieved By Failure Of Health Care Bill

Medicaid Is Integral To Children With Complex Health Care Needs

Bay Area Kids With Type 1 Diabetes Seek Funding In D.C.

California Needs Equality When It Comes To Mental Health Care

‘I Am Totally Burned Out’: Patients Watch Health Care Debate With Dread

For Medi-Cal Patients Who Need Specialists Or Mental Health Treatment, Where You Live Will Determine Your Access

‘Social Camouflage’ May Lead To Underdiagnosis Of Autism In Girls

At A Growing Number Of Schools, Sick Kids Can Take A Virtual Trip To The Doctor

For Kids With Cancer, Focusing On Quality Of Life

For Those Who Can Afford Them, Swimming Lessons Can Save The Lives Of Children With Autism

After a series of failed attempts to pass health care legislation aiming to dismantle the Affordable Care Act, Senate Republicans tried for a last-ditch effort entitled the Health Care Freedom Act, or ‘skinny repeal,’ on July 28. The bill was defeated 49-51. For an explanation of what the skinny repeal would have done, click here, and to read Family Voices’ statement on the outcome, click here. This success wouldn’t have been possible without the tireless advocacy of so many who wrote, called, and visited to let Senators know why any bill involving Medi-Cal cuts would be detrimental to children and youth with special health care needs who depend on the program.  

Alison Barkoff, Director of Advocacy at the Center For Public Representation, reflects on the power of the disability community in light of the recent defeat of the skinny repeal. 

With a few hours of sleep after last night’s vote, the significance of our advocacy is just starting to sink in. We stopped what was believed to be inevitable. That alone is amazing. Reflecting on the experience, we’ve also done so much more.

We have shown that advocacy works.

People with disabilities, their families, and allies made their voices heard. We told our stories, met with members of Congress, called, wrote, rallied and protested. We put a face on the harmful impacts of the bill. And as everyone on the Hill has told us, it was the advocacy of the disability community that made the biggest difference.

We have shown that the disability community is a force to be reckoned with.

The disability community didn’t just show up — we led the fight. With ADAPT putting their bodies on the line again and again, the Little Lobbyists going from office to office to literally show whose futures would be capped, and the Arc collecting over one thousand stories in a single weekend — the leadership in the disability community has been amazing.

We have invigorated our disability rights movement and built strong cross-disability coalitions. 

We all came together. So many people — both at the national and state level — said that groups that don’t usually collaborate were working together. We blew up the usual silos and we now have some very strong cross-disability coalitions at the national and state levels we can build off for our next fight and to push our affirmative agenda.

We have educated members of Congress and the public about Medicaid and disability rights.

Just a few months ago, we would go to Hill meetings and staffers didn’t know much about Medicaid, let alone what it meant to people with disabilities. We couldn’t get any attention on the Medicaid cuts and caps that put the lives and liberty of people with disabilities at risk. Now, this has changed. Cuts and caps to Medicaid became the wedge issue in the health care fight. Members of Congress and the public now have a fuller understanding that Medicaid helps adults and children with disabilities live in the community, be part of a family, go to school and have a job. We still have more work to do, but we are so much better positioned for our future fight to protect Medicaid.

We have built relationships with broad grassroots groups.

We have worked together with grassroots groups like MoveOn, Indivisible, FamiliesUSA, and so many others. There is much more for us to do to educate and get them to support the disability agenda, but there are some really great relationships to work from.

We have seen several members of Congress emerge as major disability rights champions.

A number of members of Congress have truly stepped up as champions of disability rights. In particular, Senators Casey, Hassan, Van Hollen and Duckworth have put disability rights front and center in the health care fight (they’re also co-sponsors of the Disability Integration Act). These champions will be important not only as we work to fight against harmful bills, but as we try to move forward the disability rights agenda.

In short, I am truly in awe of our community.  Thank you for the tireless advocacy by each of you to get us to this point.

This newsletter was sent July 18, 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.

Reminder: use our resources to tell legislators why Medi-Cal is critical for children and youth with special health care needs and urge them to preserve Medicaid. Also see: updated crosswalk of bill provisions, summary of findings, and implementation timeline (all via NASHP).

Project Leadership graduate Alison Beier and family were invited to attend Speak Now for Kids’ Family Advocacy Day on behalf of UCLA Mattel Children’s Hospital July 12-13. Each year, families from children’s hospitals across the country travel to Washington, D.C. to meet with their legislators and discuss pressing health care issues. Seven-year-old Evan Beier was born with multiple congenital anomalies, and he and his mom stressed the importance of Medicaid funding, mental health access, In-Home Supportive Services, and more.

To read Alison’s full recap and learn how the Project Leadership program helped shape her focus, click here.

Parent Survey: Rollover Of Select Kids In California Children’s Services Into Medi-Cal Managed Care Plans: How Can We Help You?

If your child receives California Children’s Services (CCS) in one of these 21 counties, Family Voices Of California invites you to share your questions, concerns, and let us know  how we might assist you in the coming year.

No sooner than July 1, 2018, The Department of Health Care Services (DHCS) will begin transitioning kids currently enrolled in CCS in the above 21 counties into Medi-Cal managed care plans.

By implementing this new Whole Child Model, the DHCS hopes to integrate health care for children and youth with special health care needs. To take the survey, click here. For more information about the Whole Child Model click here, and for county-specific phase-in information click here.

RESOURCES

CDC Releases 2016 Chartbook On Long-Term Health Trends

The Centers For Disease Control And Prevention (CDC) has released their 40th annual health trends report that presents an overview of national trends in health statistics. It also contains 141 trend tables organized around four major subject areas: health status and determinants, health care utilization, health care resources, and health care expenditures. To read the report, click here.

New Learning Module: Communicating The Importance Of Developmental Screening

The Association Of Maternal & Child Health Programs (AMCHP) has released a new learning module on the value of developmental screening. It includes four steps to promote early identification, speaker perspectives, and various resources. To view the module, click here.

 OPPORTUNITY FOR INPUT

Public Comment Period For Healthy People 2030 Framework Now Open

Healthy People provides 10-year, science-based national objectives for improving health that reflect input from a diverse group of individuals and organizations. The team is requesting comments on the proposed framework for Healthy People 2030, which refers to its vision, mission, foundational principles, plan of action, and overarching goals. For more information, click here.

Women With Epilepsy Conference To Take Place Saturday In Castro Valley

The Epilepsy Foundation Of Northern California will host its first-ever Bay Area conference this Saturday from 9 a.m – 2 p.m. The ‘Living With Epilepsy’ event is open to all women with epilepsy as well as caregivers, friends, and the public. Cost is $25 per adult, $10 per child (4-12). For more information, click here. 

WEBINARS

Mental Health Parity: Assuring Equal Access To Treatment For Children And Youth In California 

Family Voices Of California will host a webinar on August 16 detailing the necessary strategies to overcome insurance company discrimination. Attendees will learn about federal and state mental health parity laws and how to appeal the denial of insurance coverage. To register and learn more, click here.

July 20: Supporting Title V And Medicaid Collaboration In Pediatric Medical Home Implementation

Hosted by: National Center For Medical Home Implementation, National Academy For State Health Policy, and The Catalyst Center

More information and registration here.

July 20: The Many Faces Of Advocacy

Hosted by: Hemophilia Council Of California

More information and registration here. 

July 20: Allergies And Sublingual Immunotherapy (SILT)

Hosted by: Allergy & Asthma Network and American College Of Allergy Asthma, & Immunology

More information and registration here.

July 26: Medicaid Undone: Covering The Safety Net’s New Future

Hosted by: The Center For Health Journalism

More information and registration here.

July 29: Reducing Risk And Abuse Prevention

Hosted by: Parents Helping Parents

More information and registration here.

August 2: Effects Of Propranolol On Functional Connectivity In Autism

Hosted by: Autism Research Institute

More information and registration here.

August 9: Normal Pressure Hydrocephalus: Treatments And Current Research

Hosted by: Hydrocephalus Association

More information and registration here.

Archived Webinar: Measuring Family Experience Of Care Delivery Integration To Improve Care Delivery

ARTICLES

Little Lobbyists: Stories Of Kids With Complex Medical Needs On Capitol Hill

Families Take Risky Road Trip To Save Their Health Care

Potential Impact Of Health Bill On Home And Community-Based Services Spending 

California Health Care Foundation’s July Newsletter On Medi-Cal/Senate Health Care Bill 

Autism Still Gets Dismissed By Some Doctors, Family Learns In Yearlong Challenge

Increasing The Number Of Doctors With Disabilities Would Improve Medical Care

Doctors With Disabilities: Why They’re Important

Proposed Medicaid Rules Offer Rural Residents Less Access To Specialty Care

Parents Of Ill Children Worry About Return Of ‘Lifetime Limits’ In GOP Health Bill

Medi-Cal Patients Sue State, Claiming Widespread Discrimination 

On Point Radio Audio Recording: Children With Disabilities And The Senate Health Plan

Effort To Shield Disabled From Medicaid Changes Would Leave Many Kids On The Outside

‘Carve-Out’ In Senate Republican Health Care Bill Fails To Protect Children

This Boy’s Care Cost Up To $15,000 A Month. Will The GOP’s Health Plan Cover It? 

Kids In Pro-Trump Rural Areas Have A Lot To Lose If GOP Rolls Back Medicaid

For Many, Medicaid Provides The Only Route To Mental Health Care

Why Americans With Disabilities Fear Medicaid Cuts

This newsletter was sent July 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.

Save Medi-Cal: Contact Your Senators NOW! 

If the proposed Senate bill to repeal and replace the Affordable Care Act passes, more than 5 million California children would be at risk of losing their health coverage. This legislation would drastically restructure California’s Medi-Cal program in a way that would hit children and youth with special health care needs especially hard.

Although the Senate did not vote on the Better Care Reconciliation Act before the holiday recess, they are prepared to return to the bill upon reconvening July 10. Contacting your Senators to explain why Medi-Cal is critical (and encouraging friends in key states to do the same) is invaluable during this crunch time.

For email templates, phone scripts, social media tools, and other advocacy resources click here.

Family Voices Statement On Senate Health Care Bill

Senate Republican Statements On Health Care Bill

CBO: Senate Bill Cuts Medicaid By More Than One-Third By 2036

Roundup: Analyzing The Senate GOP Health Bill

Little-Noticed Medicaid Changes In Senate Health Plan

Disability Advocates Push Back On Health Bill As Vote Looms

For Millions, Life Without Medicaid Services Is No Option

Parents Of Sick Kids Try To Remind Congress What The Health Care Debate Should Be About

RESOURCES

Study: Use Of Sign Language After Cochlear Implant May Slow  Verbal Development

A new study from the American Academy Of Pediatrics used nationwide data to document verbal skills in children with cochlear implants who received different amounts of early sign language exposure. Researchers found 70 percent of children not exposed to sign achieved spoken language similar to their peers with normal hearing, compared to 39 percent of those who were exposed to sign for 3+ years. To read the study, click here.

Related: two new websites for parents of children who are deaf or hard of hearing launched earlier this year. Hear To Learn offers downloadable activities that focus on language, literacy, math, and music. SignIt is a basic online American Sign Language course that’s free for parents of young children who are deaf or hard of hearing. The self-paced curriculum  is ten units and is estimated to take 25-30 hours to complete. 

Session Recordings Now Available From UCEDD Life With Down Syndrome Conference

The University Center For Excellence In Developmental Disabilities hosted their Life With Down Syndrome: Fulfillment, Health, Education, Advocacy, And Inclusion conference in May and have made all session recordings and accompanying handouts available. The 13 presentations cover topics such as genetics and research development, oral placement therapy, teaching reading and writing, dating, conservatorship, and more. To browse the presentations, click here. 

Brief: Increasing The Physical Accessibility Of Health Care Facilities 

A new issue brief from the Centers For Medicare And Medicaid Services discusses examples of federal and state-level efforts to increase the accessibility of health care facilities and offers suggestions for improvement. The information suggests that structural obstacles, inaccessible equipment, and restrictive polices and procedures contribute to the widespread health care disparities experienced by people with disabilities. To read the brief, click here. 

OPPORTUNITY FOR INPUT

Surveys: Emotions Surrounding Diagnosis Of Autism Spectrum Disorder, Improvements For School-Based Services

Researchers at the University Of South Dakota are conducting surveys on behalf of the South Dakota Leadership Education In Neurodevelopmental And Related Disabilities (SD LEND) program. The first survey seeks to understand the wide range of emotions parents experience when their child is first diagnosed with autism. Five random participants will win five $20 Amazon gift cards. The second survey contains questions about school-based services for children with autism and what could be improved. 

Registration Open For Inland Valley Deaf And Hard Of Hearing Family Camp August 11-13

California Hands & Voices is hosting their second annual family camp August 11-13 at Prado Regional Park in Chino. Parents will have the opportunity to attend workshops and discuss concerns related to raising kids with hearing loss while their children participate in a variety of planned activities and campfire events. Weekend cost: $75 (adult), $55 (child). Individual day rates also available. To register, click here.

WEBINARS

Archived Webinar: Coming Of Age In Autism: The Transition To Adulthood

July 6: Preparing For 2018: Overview Of Changes In The Marketplace

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 7: Changes To Special Enrollment Periods (SEPs) And Pre-Enrollment SEP Verification

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 11: Promoting Patient Resilience In Clinical Practice: An Introduction To the Strengthening Families Protective Factors Framework

Hosted by: Connecticut Children’s Medical Center and American Academy Of Pediatrics

More information and registration here.

July 19: Help Prevent Accessible Parking Abuse

Hosted by: United Spinal Association

More information and registration here.

July 25: How Technology Is Empowering Hydrocephalus Patients

Hosted by: Hydrocephalus Association

More information and registration here.

July 25: Focused Ultrasound And Potential New Technologies For Difficult To Control Seizures

Hosted by: Epilepsy Foundation

More information and registration here.

July 27: Expert Series On Addressing Infant Mortality

Hosted by: National Institute For Children’s Health Quality

More information and registration here.

July 27: Feeding Q&A: Beyond The Basics

Hosted by: The Johnson Center For Child Health And Development

More information and registration here.

August 16: Mental Health Parity: Assuring Equal Access To Treatment For Children And Youth In California

Hosted by: Family Voices Of California

More information and registration here.

ARTICLES

Complex Child July Edition: Rare And Interesting Conditions

Survivors Of Childhood Diseases Struggle To Find Care As Adults

In California, 14 Million Reasons to Wonder – And Worry – About GOP Health Care Bill

Their Children Are Dying. So These Families Are Racing To Raise Money for Research No One Else Will Fund

Hoop Dreams: Wheelchair Basketball Is Changing Lives In Afghanistan

Disability Services Threatened Under Proposed Cuts To Medicaid

Stories About Disability Don’t Have To Be Sad

This newsletter was sent June 20, 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.

The Senate may vote on the proposed health care bill (the Better Care Reconciliation Act) before their scheduled recess the beginning of July. Continued advocacy over the duration of the month is critical to ensure the legislation to repeal and replace the Affordable Care Act does not pass. The bill would completely restructure California’s Medi-Cal program by imposing cuts and caps, threatening care for children with special health care needs.

While we know California’s Senators will be voting against the the bill, it’s still important to let them know you strongly support this decision.

If you have friends or family living in the following key states, consider asking them to contact their own Senators (information on how to do so here): Alabama, Alaska, Arizona, Colorado, Georgia, Indiana, Louisiana, Maine, Missouri, Montana, Nebraska, Nevada, Ohio, Pennsylvania, West Virginia, and Wisconsin.

For email templates, phone scripts, social media tools, and other resources to tell Senators why Medi-Cal/Medicaid is essential, click here.

Related

Disability Advocates Fear Impact Of Medicaid Cuts In GOP Health Plan

House ACA Repeal Puts Children With Disabilities And Special Health Care Needs At Severe Risk

Americans Across The Political Spectrum Agree: Cutting, Capping And Restructuring Medicaid Is A Bad Idea (survey results)

RESOURCES

Report: Medicaid In Small Towns And Rural America: A Lifeline For Children, Families, And Communities

A new report from the Georgetown University Center For Children And Families found that individuals living in small towns and rural areas would be hit the hardest by Medicaid cuts. In 14 states including California, more than half the children living in rural areas are enrolled in Medicaid. The report authors acknowledge that kids would be “disproportionately harmed” should changes to the program be made. To read the report, click here.

Related

Cuts To Medicaid Devastating For Rural Area Kids

California’s Rural Counties Benefit Most From Government Health Coverage

Republican Proposal To Repeal ACA And Cut Medicaid Would Harm Rural Towns

Note: The Centers For Medicare & Medicaid Services recently released a new Medicaid final rule that addresses specialty care access standards for people living in small towns and rural counties vs. those living in larger counties. If you think your family might be impacted by the implementation of this rule or you’ve ever had challenges accessing Medi-Cal in your rural area, please contact FVCA by responding to this newsletter or calling (415) 282-7494.

National Autism Indicators Report: Developmental Disability Services And Outcomes In Adulthood

A new report from the A.J. Drexel Autism Institute found that, as demonstrated in years past, state-provided disability services often fail to meet the needs of adults with autism. The annual publication surveyed an estimated 111,000 people diagnosed with autism spectrum disorder during their transitions to adulthood. Many reported they had a difficult time achieving employment, continuing their education, living independently, and were overall dissatisfied with their quality of life. Although individuals used an average of six different state service, the report notes that families end up shouldering much of the care. To read the report, click here.

Related: Many Adults With Autism Struggling Even With Services

2017 Kids Count Data Book: State Trends In Child Well-Being

The Annie E. Casey Foundation has released their annual data book which ranks how American children are faring based on four markers: economic well-being, education, health, and family and community. Each of these markers includes four separate indicators, such as ‘children in poverty’ or ‘low birth-weight babies.’ California’s overall rank was 37 (36 last year), with an economic well-being rank of 46, education of 38, health of 9, and family and community of 42. To read the report, click here, and to read a summarizing article, click here.

OPPORTUNITY FOR INPUT

Conference: Bridging Pathways To Quality Health Care For People With Special Needs

The San Gabriel/Pomona Regional Center, in collaboration with the University Center For Excellence In Developmental Disabilities, is hosting a multidisciplinary conference for health care professionals on August 12 in Pomona, CA. The conference is designed to enhance community knowledge about working with and caring for individuals with special health care needs. For more information, click here.

Funding Opportunity: Models For Enhancing Home And Community-Based Services

The Administration For Community Living (ACL) is looking to support models of home and community-based services (HCBS) that increase integration and independence for people with disabilities. The models must address the development of a system that uses community and state-level partners to monitor safety and identify risk factors for neglect and exploitation. They must also demonstrate evidence-based practices and innovative strategies that seek to improve services for people with disabilities. For more information, click here.

Related ACL webinar (June 28): The Home And Community-Based Services Quality Framework Development

Upcoming Advocacy Trainings On AHCA And Children With Special Health Care Needs

The Children’s Hospital Association is partnering with various organizations to present a series of skill-building workshops on the proposed American Health Care Act (AHCA) and how family, caregivers, and providers of children with special health care needs can best engage with members of Congress to tell their stories:

June 27, 10am-12:30pm at Valley Mountain Regional Center in Stockton. Register here.

June 29, 7pm-9pm at North Los Angeles Regional Center in Santa Clarita. Register: losangeles@scdd.ca.gov or call (818) 543-4631

June 30, 10am-12pm at Hesperia Library in Hesperia . Register here.

Related: The Faces Of Medicaid

Survey: Institute On Disability/UCED Seeks Feedback On Improving Range Of Programs 

The Institute On Disability at the University Of New Hampshire is looking for consumer feedback regarding the scope of their programs and services. To take their satisfaction survey, click here.

WEBINARS

June 21: Rethinking Young Fathers: Policy And Practice Recommendations For Child Welfare Systems

Hosted by: The Center For The Study Of Social Policy

More information and registration here. Accompanying report here.

June 21: Advocacy 101: How To Influence Policies And Improve Lives

Hosted by: Food Allergy Research & Education

More information and registration here.

June 21: Organizing To Protect Health: How Public Health Can Fight Cuts To Medicaid And SNAP

Hosted by: Public Health Awakened

More information and registration here.

June 22: FY2018 Budget

Hosted by: The National Center For Birth Defects And Developmental Disabilities

More information and registration here (replaces the previously scheduled June 12 webinar).

June 22: Potty Time! A Journey To Successful Toilet Training

Hosted by: Down Syndrome Affiliates In Action

More information and registration here ($25).

June 27: Braiding And Blending Funds To Meet Health-Related Social Needs: Lessons From Louisiana And Virginia

Hosted by: The National Academy For State Health Policy

More information and registration here.

June 27: Intro To Fetal Alcohol Spectrum Disorders: The Medical Assistant’s Role

Hosted by: The National Organization On Fetal Alcohol Syndrome

More information and registration here.

June 27: RARE Patient Impact Grant Q&A

Hosted by: Global Genes

More information and registration here.

June 27: Novel Approaches To Public Health

Hosted by: The Public Health Institute

More information and registration here.

June 28: The Home And Community-Based Services Quality Framework Development

Hosted by: The Administration On Community Living

More information and registration here.

ARTICLES

Medi-Cal Cuts Will Eliminate Or Reduce Access To Necessary Services (and the rest of NHelp’s ‘Protect Medi-Cal blog series, found here)

The Myth Of Disability ‘Sob Stories’

I Lost My Voice, But Help Others Find Theirs

On Being Joe’s Mom: Why Inclusion Is Important to This Mother

As She Operated On Babies’ Birth Defects, A Doctor Hid Her Own Diagnosis

California Schools Respond To Students’ Fears Of Trump Immigration Policies

Isabelle Rapin, Who Advanced Concept Of An Autism Spectrum, Dies At 89

Zika In America: One Mother’s Saga

California Nixes Plan To Offer Full Medicaid Benefits To Undocumented Young Adults

Wisconsin Family Stays Together With Help From Medicaid

At Airports, Making Travel Easier For Autistic Passengers

This newsletter was sent June 6, 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.

Reminder: Let your Senators know why Medi-Cal is critical to children and youth with special health care needs & urge them to vote ‘no‘ on the American Health Care Act. Resources here.

NEWS

$80,000 Allocated In Budget To Fund Psychotropic Drug Reviews For Foster Youth

The National Center For Youth Law announced that their campaign to include an additional $80,000 in the state budget for stricter guidelines surrounding foster youth and psychotropic drugs was successful. Over-medicated children can face serious, lifelong health consequences including morbid obesity, diabetes, and cardiovascular damage. If approved by Governor Brown, the $80,000 would ensure foster children are prescribed psychotropic medications within safety thresholds, and that all kids on these drugs would have access to a psychiatric review no matter where they live. As it stands, many counties are not able to provide this third party review due to a shortage of child psychiatrists within California. For more information, click here.

DHCS Releases Final Evaluation Designs For Medi-Cal 2020 Initiatives

The Department Of Health Care Services (DHCS) has submitted final designs to evaluate four programs under California’s Medi-Cal 2020 demonstration for approval by the Centers For Medicare & Medicaid Services (CMS). DHCS developed the final evaluation designs in response to CMS’ comments and stakeholder feedback on draft evaluations. Over the course of the demonstration period, DHCS must specify methods to determine and analyze the impacts of the following programs: the California Children’s Services pilot, the Dental Transformation Initiative, the Global Payment Program, and services for Seniors and Persons with Disabilities. For more information, click here.

RESOURCES

National Title V Children And Youth With Special Health Care Needs Program Profile

The Association Of Maternal & Child Health Programs has released a new report based on a survey of state and territorial agencies that provide services with federal Title V funding. It explores children and youth with special health care needs programs, the roles they play in systems of care, partnerships, financing of care, and emerging issues. To read the report, click here.

AAP Issues Guidance On Pediatrician’s Role In Shared Decision-Making For Children With Disabilities

In a new report from the American Academy Of Pediatrics (AAP), researchers acknowledge the pediatrician’s central role in the many decisions that come forth when raising a child with a disability. The guidance urges pediatricians to ensure information is “exchanged in both directions” between themselves and families. They should also take all values and priorities into account. Stressful health care situations that arise for families of children with disabilities and their care teams can sometimes prevent a decision, and the AAP’s guidance offers information and clinical tools for shared decision-making, or a framework that promotes family and clinical collaboration, that can help all parties arrive at the best treatment plan. To view the guidance, click here, and to read an article summarizing the report, click here.

Related: Pediatricians Pressed To Help Families Of Kids With Disabilities

New AAP Supplement On Current Knowledge, Research Regarding Fragile X Syndrome

A new supplement in this month’s issue of Pediatrics summarizes current knowledge of fragile X syndrome and reinforces the pediatrician’s role in early identification and working with families to improve outcomes and quality of life. It also discusses the importance of genetic testing in attempt to reach an actual diagnosis. To read the supplement, which consists of eight articles, click here, and to read an article summarizing findings, click here. 

OPPORTUNITY FOR INPUT

Rare Disease Research Grants Now Available: Applications Due June 23

The National Organization For Rare Disorders is offering research grants for the study of five specific disorders: alveolar capillary dysplasia with misalignment of the pulmonary veins, appendix cancer and pseudomyxoma peritonei, cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. Initial applications due June 23. For more information, click here.

Youth With Disabilities Encouraged To Join Sacramento’s Disability Action Day

The Disability Action Coalition is hosting its annual Disability Capitol Action Day in Sacramento on June 13, and YO! Disabled & Proud is calling on all youth with disabilties 16-28 years old (and their allies) to participate. Throughout the day, attendees meet with their legislators and discuss key bills. YO! hopes to focus on improving translation services during Individualized Education Plans (SB 354), suicide prevention in K-12 and college (AB 917 and AB 1318), and ensuring that fee waivers continue to aid lower-income students (AB 204). For more information, click here or email Yolanda at yolanda@cfilc.org.

Related: Disability Advocates Protest Medicaid Cuts

WEBINARS

June 12: 2018 Fiscal Year Presidential Budget Review

Hosted by: The National Center On Birth Defects And Developmental Disabilities

More information and registration here.

June 13: Innovative Health Care Financing Strategies For Children And Youth With Special Needs 

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

More information and registration here. Check out the accompanying supplement in Pediatrics, which contains eight articles analyzing value-based purchasing and value-based insurance design in relation to children with special needs. 

June 13: Maximizing Access: Connecting Health Care And Oral Health Care

Hosted by: The Office Of Disease Prevention And Health Promotion

More information and registration here.

June 13: Strength-Based Approaches To Screening Families For Health-Related Social Needs In The Health Care Setting

Hosted by: The Center For The Study Of Social Policy

More information and registration here.

June 15: Measuring Family Experience Of Care Integration To Improve Care Delivery

Hosted by: The Lucile Packard Foundation For Children’s Health and Family Voices

More information and registration here.

June 15: Impact Of Zika On Women And Children: Realities And Recommendations For Public Health Professionals And Clinicians

Hosted by: Boston University School Of Public Health

More information and registration here.

June 20: Achieving Partnership: Integrating Family Engagement In Systems Of Care

Hosted by: The National Center For Medical Home Implementation

More information and registration here.

June 22: Integrating Community Pharmacists Into Complex Care Management Programs

Hosted by: The Center For Health Care Strategies

More information and registration here.

June 24: Abuse Prevention And Reducing The Risk Of Violence

Hosted by: Parents Helping Parents

More information and registration here.

June 27: Autism And Technology

Hosted by: The Autism Research Institute

More information and registration here.

June 29: Bullying Prevention For Individuals With Intellectual And Developmental Disabilities

Hosted by: The University Center For Excellence In Developmental Disabilities

More information and registration here.

ARTICLES

Complex Child June Edition: Education And Learning

Trump Budget Guts Medicaid, Disability Programs

Medicaid And Children With Special Health Care Needs 

After Outage, Ed Department Unveils New IDEA Site

Moms Are Speaking Out For Health Care

Trump’s Budget Takes Aim At My Sweet Son

Dealing With Dyslexia, Starting With One Family’s Battle For A Diagnosis

Surprise For A Mother Who Helped Her Paralyzed Son In Every Class

The High Cost Of Childhood Disruptive Behavior Disorders

Why Parents Of Kids With Special Needs Are Fighting Bathroom Bills

Stark Disparities Persist At Centers Serving Children With Special Needs

Infographic: Medicaid’s Role For Children With Special Health Care Needs

Do Charter Schools Serve Special Needs Kids? The Jury Is Out

A Baby Girl. A Baffling Disease. And The Only Way To Help Her Is To Hurt Her

CDC Annual Summary Observes Decreases In Infant Mortality Rates, Teen Birthrates