Sexuality & Disability Webinar, Transition Resources, & Disaster Preparedness

This newsletter was sent October 10, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

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

Communicating With Your Kids: Sexuality And Developmental Disabilities Webinar

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

RESOURCES

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

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

Other helpful transition resources:

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

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

Exceptional Parent’s article on transitioning to adult neurological care

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

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

American Red Cross Disaster Preparedness Guide For People With Disabilities

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

Also see:

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

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

WEBINARS

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

Hosted by: Center For Health Care Strategies

More information and registration here.

October 18: Zika Virus And Your Eyes 

Hosted by: Prevent Blindness

More information and registration here.

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

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

Hosted by: The Johnson Center For Child Health And Development

More information and registration here.

October 24: Family-Centered Care And Conversation Techniques

Hosted by: The STAR Center

More information and registration here.

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

Hosted by: SF Autism Society

More information and registration here.

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

Hosted by: Vermont Family Network

More information and registration here.

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

Hosted by: Autism Research Institute

More information and registration here.

ARTICLES

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

For Foster Parents Of Disabled Children, Money Stays Tight

Learning To Breathe

Arresting Disabled Bodies

Complex Child October Edition: Allergies And Intolerances

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

For Children With Severe Anxiety, Drugs Plus Therapy Help Best

No Graham-Cassidy! Call CA Reps. NOW!

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

Medi-Cal At Risk Again In Graham-Cassidy Bill

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.

Senate Republicans have introduced the Graham-Cassidy bill as a last-ditch effort to repeal the Affordable Care Act before the budget reconciliation deadline at the end of the month.
 
Even more detrimental to the disability community than the failed Better Care Reconciliation Act, 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).
 
For the top 10 threats to people with disabilities under the proposed bill, click here, and to read an analysis of its fiscal impact click here.
 
It’s critical that we ACT NOW on this tight deadline and encourage Senators to vote no on the Graham-Cassidy bill. For talking points and a contact list of key Senators, click here. Consider reaching out to these individuals yourself and asking anyone you know in these pivotal states to do the same.
 

Helpful Phone Apps, Fetal Alcohol Awareness Month, & CHIP Webinar

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.

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 seeProfessionals 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

The Catastrophic Diagnosis: A Photo Essay

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.

New Website Section, Updated AAP Transition Info, & Epilepsy Camps

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

Autism & Medi-Cal, Well-Visit Planners, & Promising Medical Home Practices

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

 

 

Project Leadership In Action: D.C. Advocacy

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 13th 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 29th 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.

The Power Of Disability Advocacy, Sickle Cell & The ER, & CCS Survey

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.

Alison Barkoff, Director of Advocacy at the Center For Public Representation

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).

Relatedvideos 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

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 hereThis 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.

Alison Barkoff, Director of Advocacy at the Center For Public Representation

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.

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