Advocacy Tools

FVCA seeks to ensure that the voices of families of children with special health care needs are heard at both the State and Federal level when policies, votes, and decisions are made.

We encourage families, professionals, advocates and all those interested in the well being of children with special health care needs to write or talk to their elected officials about the policies and decisions affecting their children.

Who Are Your Elected Officials?

Find out who your elected Federal and State officials are and how to contact them by simply entering your zip code here.

Tips For Writing to Legislators


Advocacy & Policy Resources

Here are some websites that offer information on policy development and/or legislative initiatives concerning children:

The Legislative page of AMCHP (The Association of Maternal and Child Health Programs) tracks and analyzes emerging policy issues such such as Medicaid reform, bio-terrorism, and welfare re-authorization.

Focus on Children Now has information on policies affecting children in California.

The Children’s Defense Fund’s mission is “Leave No Child Behind.” The site offers lots of information and links to other sites.

Families USA provides lots of information on children’s health issues from various sources. View Legislative alerts in their Action Center portal.

On the Family Voices National website, look at the “Advocates Corner” or click on “Policy” to get current information on proposed Federal legislation and policies affecting children.

Health Access California is a statewide health care consumer advocacy coalition of over 200 organizations working for the goal of quality, affordable health care for all Californians.

Disability Rights CA works to advocate, educate, investigate and litigate in order to advance and protect the rights of Californians with disabilities.

The Disability Rights Education and Defense Fund is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.

The National Health Law Program has lots of information on health policy. Click on “Children’s Health” to view issues concerning children’s health policies.

The Henry J. Kaiser Family Foundation provides information on and analysis of health issues, including Medicaid and SCHIP.

The Children’s Specialty Care Coalition is a non-profit association dedicated to educating and advocating for access to quality healthcare for California’s children with special healthcare needs.

Project Leadership

FVCA Project Leadership aims to equip families with the skills and tools necessary to partner and engage in all levels of public policy advocacy on behalf of children with special health care needs. The Project Leadership curriculum introduces parents and caregivers to the nuts and bolts of advocacy in a seven-session training series. The program is funded through a grant from the Lucile Packard Foundation for Children’s Health.

Project Leadership Training Manual

FVCA grants permission for the printing and implementation of the Project Leadership curriculum as long as FVCA is given credit. This curriculum is intended for use as a seven-session training series, or chapters can be used for individual training workshops. If you are using an individual chapter, please present chapter 0 prior to beginning the chapter session.

Introduction: What Is Project Leadership? Acknowledgements, Council Members, Notes for Facilitator, Table of Contents

Chapter 0: Pre-Training

Chapter 1: Knowing the Past to Change the Future: History and Purpose of Advocacy

Chapter 2: Rules of the Road: Systems, Laws, and Entitlements

Chapter 3: Becoming a Mover and Shaker: Working with Decision-Makers for Change

Chapter 4: Playing Well with Others: Enhancing Communication

Chapter 5: Telling Your Story: Developing and Presenting Stories to Others

Chapter 6: Ways You Can Serve: Participating on Decision Making Bodies

Chapter 7: Solidifying Partnerships: Connecting with Local Change Makers


Project Leadership: Effecting Change, One Parent at a Time

Families of children and youth with special health care needs have had significant real-world experiences that could help make health care policies and administration more family-centered and culturally competent. However, many lack the training and experience to make their voices heard. FVCA’s Project Leadership program was designed to increase the capacity of families to partner in the development and oversight of services, systems, and programs upon which they and their children depend. Project Leadership features a comprehensive training curriculum, paired with mentoring and support, that prepares families to build partnerships with professionals and engage in public policy advocacy on behalf of children and youth with special health care needs. An independent evaluation found that program graduates from diverse backgrounds showed significant improvement in leadership skills and more confidence in their ability to advocate. In the project’s first two years, 79 parents completed the training and began actively participating on a variety of committees and planning bodies. In addition, they gave testimony at state and local hearings and were covered by the media.

Read the report: Project Leadership: Effecting Change, One Parent at at Time



Family Participation In Discharge Planning: Voices Of Patients, Parents, And Adcoates (June 9, 2016)

Video Recording

This lecture with Boston Children’s Hosptial focused on understanding and improving the family experience of discharge.

Legislative Day Advocacy Training 101 (March 4, 2016)

Video Recording

This webinar provides an outline for effectively speaking to legislators and advocating for your child with special health care needs.


FVCA Project Leadership Year 3

Video Recording [wmv] • Slides [ppt]

This webinar provides the background of Project Leadership, an overview of the content and components, the results from its first two years, and an outline of opportunities for agencies interested in training implementation during Year 3 of the project, including a train-the-trainers workshop.

Panelists: Allison Gray, Emelyn Lacayo, Kausha King, Michele Byrnes

Resilience, Coffee, and Community: How Parents Advocate for Children with Special Needs (June 17, 2015)

Recording [mp4] • Slides [ppt]

In this interactive lecture and discussion, Sarah Taylor, MSW, PhD, shared insights from her personal journey in advocating for her 8-year-old super-kid with fragile x syndrome, as well as the experiences of over 300 parents who participated in a study about how they advocate for their own children and others at personal, organizational, community, and policy levels.

Guest presenter: Sarah Taylor, MSW, PhD is an Assistant Professor of Social Work at CSU East Bay. She has presented at numerous national, state, and local conferences and has published in a variety of academic journals.


Medi-Cal and Coverage for Behavioral Health Treatment for Autism (December 3, 2014)

Video Recording [wmv] • Slides [pdf]

Kristin Jacobson, President and Founder of Autism Deserves Equal Coverage Foundation, presents on the new autism treatment coverage benefits under Medi-Cal. This is an introductory Webinar and is appropriate for families interested in accessing services through Medi-Cal as well as staff from family resource centers interested in learning about the benefit so they can help families in their catchment area. Information will be provided on eligibility for services and how to access services and will be relevant for individuals currently receiving BHT through regional centers, regional center clients who are not receiving BHT, and families who are not regional center clients. There will also be information about using the benefit as a primary insurance or as a secondary insurance to cover cost sharing for a private plan. Finally there will be some information for providers interested in becoming Medi-Cal BHT providers.

Tools & Resources from Family Voices to Help You in Your Work with Families of CYSHCN (November 5, 2014)

Video Recording [wmv]  •  Slides [pdf]

Please join us to learn from the experts at national Family Voices about all the fantastic resources available to you to help you in your work with families of children and youth with special health care needs.

Presenters: Bev Baker, Co-Director Family Voices and the National Center for Family and Professional Partnerships; Nora Wells, Co-Director Family Voices and the National Center for Family and Professional Partnerships; Leslie Carroll, Director of IMPACT; Peggy Curran, Consultant to Family Voices.

Our Children Eat Differently: Raising a Child with a Feeding Tube (October 29, 2014)

Video Recording [wmv]  •  Slides (Parent Perspective) [pdf]  •  Slides (Doctor Perspective) [pdf]

Tens of thousands of children in the U.S. depend on feeding tubes to receive the nutrition they need to grow and thrive. Dr. William Berquist, Professor of Pediatrics in Gastroenterology at Lucile Packard Children’s Hospital at Stanford, will focus on the history of feeding tubes, their benefits for children with a range of medical conditions, and the pros and cons of different types of feeding tubes. Michele Byrnes will discuss her perspective as a parent raising a child with a feeding tube and share the resources she’s gathered since her son was diagnosed with failure to thrive as a newborn four years ago.

Presenters: Dr. William Berquist, Pediatric Gastroenterologist, Lucile Packard Children’s Hospital; Michele Byrnes, Mother of a child with a feeding tube and graduate of FVCA Project Leadership Program.

A Conversation about Telehealth and Children with Special Health Care Needs (October 8, 2014)

Video Recording [wmv]  •  Slides [pdf]

What telehealth is; how telehealth can be used to improve access to and coordination of care for children with special health care needs; how Family Resource Centers and others advocates for children can help identify barriers and solutions to wider adoption of telehealth to meet the needs of children with special health care needs.

Presenters: Jacob Vigil, Program Associate, The Children’s Partnership; Mei Kwong, Senior Policy Associate, Center for Connected Health Policy; Project Director, The National Telehealth Policy Resource Center; James Marcin, MD, MPH, Professor, Pediatric Critical Care, UC Davis Children’s Hospital.

Introduction to Medi-Cal Administrative Activities (MAA) (October 1, 2014)

Video Recording [wmv] •  Slides [ppt]

This is the perfect webinar for all Family Resource Centers and their staff.  MAA is an opportunity to leverage public dollars that you are using to do outreach for health services, Covered California, and Medi-Cal. It is a federal reimbursement program for activities you are already doing to get children and families into health services, to coordinate those health services, and to plan to ensure we have the necessary health services for our community.

Presenter:  Gretchen Schroeder, Consultant, HealthReach.

California Children’s Services (CCS) – The Nuts and Bolts of the Program (September 10 2014)

Video Recording[wmv]

Slides:Kathi Smith – “California Children’s Services” [pdf]  •  Kausha King – “ CCS – What Do Parents Say” [pdf]  •  Laurie A. Soman – “CCS: The Nation’s First Program for Children with Special Health Care Needs” [pdf]  •  Mary Doyle – “Nurse Case Management Redesign Project:  Los Angeles County CCS” [pdf]

Please join our CCS panel of experts to learn the nuts and bolts of the CCS program including how California created the first public program for children with special health care needs, how CCS works for CSHCN, innovative strategies for improving the program, what parents think about CCS, and potential changes to CCS over the next few years.

Sickle Cell Disease: Myths and Realities (August 6, 2014)

Video Recording [wmv]  •  Slides [pdf]

Learn about the physical, psychological and social aspects of Sickle Cell Disease as well as treatments and outcomes. Learn how to advocate as a caregiver, a patient with sickle cell disease or as a provider so that emergency department visits are more “successful.”

Presenters: Marsha Treadwell, PhD, Director, Northern California, Network of Care for Sickle Cell Disease; Wanda Williams, Chairperson, Sickle Cell Community Advisory Council.


Diabetes Type 1 - how does it happen, how do we manage it? (September 11, 2013)

Video Recording [wmv]  •  Slides [pdf]

Dr. Saleh Adi will be presenting on Type 1 Diabetes to explain the diagnosis, how it happens and the current treatment available.

Presenter: Dr. Saleh Adi, Clinical Professor of Pediatrics, Director, Madison Clinic for Pediatric Diabetes Benioff Children’s Hospital, UCSF

Healthy Families Transition to Medi-Cal (August 21, 2013)

Video Recording [wmv]  •  Slides [pdf]

This webinar will increase understanding and awareness of the Healthy Families transition to Medi-Cal, service coverage for the children, continuity of care, and adequacy of provider network.

Presenter: Jane Ogle, Deputy Director, CA Department of Health Care Services

Bridging the Gap: Transition from Pediatric to Adult Care for Young Adults with Childhood Onset Chronic Illness (August 14, 2013)

Video Recording [wmv]  •  Slides [pptx]

Researchers from the Stanford Clinical Excellence Research Center will be sharing their transition model and want to hear your thoughts! Their model is focused on the hazardous and unnecessarily costly transition of care for teens and young adults with complex chronic illnesses as they move from the pediatric to the adult health care system.  Their new care model for transition is based on their research which includes extensive conversations with parents, young people, and a wide variety of health care providers.  They are currently in the process of identifying pilot sites to implement the model and evaluate its effectiveness.

Private Insurance Coverage under California’s Affordable Care Act (Covered California) (July 3, 2013)

Video Recording [wmv]  •  Slides [ppt]

Peggy McManus, President of the National Alliance to Advance Adolescent Health, will be discussing her latest research on the benefits and cost sharing requirements under the new California Health Exchange affecting children and youth with special health care needs. Peggy’s research on this topic was funded by the Lucile Packard Foundation for Children’s Health.

Home and Community Based Waivers (Nursing and Institutional Deeming) (June 5, 2013)

Video Recording [wmv]  •  Medicaid Waivers slides [ppt]  •  HCBS Waivers slides [ppt]

This one hour webinar will review home and community based waivers:  how waivers work, who is eligible, what services are received, waiting lists.

Presenters: Kathryn Smith, RN, Dr.PH, Associate Director of Administration, USC UCEDD at CHLA; Elissa Gershon, Senior Attorney, Disability Rights California

Regional Centers and Insurance Companies –Who pays for what services (May 29, 2013)

Video Recording [wmv]

Slides: Katie Hornberger: “The History of SB 946” [pptx]  •  Amy Westling: “Regional Center Response to SB 946” [pptx]

This webinar will review California’s Autism Insurance Mandate – Who is the payer of first resort to cover necessary treatments for children with autism or PDD?

Presenters:  Amy Westling, Senior Policy Analyst at Association Regional Center Agencies (ARCA), Katie Hornberger, Director, Office of Clients’ Rights Advocacy, Disability Rights California, and Janice Milligan, Director of Health Net of California. 

In Home Support Services (IHSS)(May 22, 2013)

Video Recording [wmv]  •  Slides [ppt]

This webinar will cover a brief overview of IHSS, developments in the Oster v. Lightbourne case, recent changes and developments in the IHSS program, and where families may go for help.

Presenter: Maria Fernanda Iriarte, Managing Attorney, Disability Rights California

Educationally Related Mental Health Services (May 15, 2013)

Video Recording [wmv]  •  Slides [ppt]

This one hour webinar helps parents and advocates understand current special education law related to mental health services for students with disabilities.  Parents learn strategies to assist them in advocating for appropriate mental health services for their children.

Presenter: Maggie Roberts from Disability Rights California (DRC)

The Affordable Care Act and Exchange – What are the Specifics? (April 4, 2013)

Video Recording [wmv]  •  Slides [ppt]

On April 3rd, 2013, Lisa Chan-Sawin presented the Affordable Care Act and Exchange Webinar.  Lisa spoke of the specifics of the ACA which included an overview , the timeline of provisions impacting Children Health Benefit Exchanges, California’s implementation of the ACA, pediatric coverage and the uncertain future of the ACA.

Lisa is the Director of Policy & Operations at Harbage Consulting. She has expertise in health insurance regulation, public coverage programs, delivery system transformation and health IT policy, including telehealth and data exchange. 

Getting the Most Out of Your Health Insurance (March 6, 2013)

Video Recording [wmv]

Kristin Jacobson,  President of Autism Deserves Equal Coverage (ADEC) and Member DMHC Autism Advisory Task Force  for SB 946, discussed how the health coverage landscape is changing quickly with the implementation of President Obama’s Affordable Care Act and new state mandates. Insurers in many cases are required to cover behavioral treatment like Applied Behavior Analysis, speech therapy, occupational therapy and other treatments. We learned how to get the most from your health insurance in this informative webinar for families of children with autism and other behavioral disabilities.


What You Need to Know about Changes to MediCal and Healthy Families for Children with Special Health Care Needs (November 7, 2012)

Video Recording [wmv]  •  Slides [ppt]

This webinar presented the important changes in access to health and mental health services that will affect children with special health care needs who have health insurance through MediCal and Healthy Families programs. These are issues that families need to know, since they may impact your child’s services.

Presented by Dr. Renee Wachtel, Developmental-Behavioral Pediatrician. Dr. Wachtel has been caring for children with developmental disabilities and behavioral issues for many years, and serves as chair of the American Academy of Pediatrics (Chapter 1) Committee on Developmental and Behavioral Pediatrics and chair of the Bay Area Autism Consortium.

Educationally Related Occupational & Physical Therapy Services (October 3, 2012)

Video Recording [wmv] •  Slides [ppt]

Learn how educationally related therapy is different from medically related therapy, and how to ask for these therapies from the school district if you feel a child needs them. Learn when an evaluation by a school therapist is warranted and what kinds of skills and activities a school based therapist may be able to provide. Carol Cohen, Family Health Liaison, Family Resource Network (FRN Alameda County) and Pat Louie from Alameda County California Children’s Services (CCS) will discuss these topics as well as how CCS provides medically necessary therapy and how this therapy should be documented in a child’s Individualized Education Plan (IEP).

CCS Medical Therapy Program Means Test - The Pros and Cons (May 2, 2012)

Changes to Medi-Cal and IHSS (Jan 4, 2012)

Slides [ppt]

60 minute webinar overview of changes to Medi-cal and IHSS due to California budget cuts. Dr. Smith will discusses how the state trigger cuts may impact those systems and what we can do now to have a positive impact.

Presenter:Dr. Kathryn Smith has over 35 years experience caring for children with special health care needs, including those with neurodevelopmental disabilities. At Children’s Hospital Los Angeles (CHLA), she serves as the senior Autism Treatment Network site coordinator, nurse care manager in the Boone Fetter autism clinic, co-director of the Spina Bifida Center, associate director for administration at the University Center for Excellence in Developmental Disabilities at CHLA, and policy concentration leader within the Leadership Education in Neurodevelopmental Disabilities (LEND) training program at the UCEDD. She has a strong interest in child health policy, quality improvement and research in these areas.


The Autism Insurance Coverage Act: What Does it Mean for Families? (December 2011)

Video Recording [wmv]

Are you curious about what the passage of the Autism Insurance Coverage Act means to your family or the families that you serve? Please join us for a free 60 minute webinar overview of the Act and the implications for families in California. What can we do to be proactive? What do we do if there are challenges in accessing our insurance coverage? Kristin is the founder of Autism Deserves Equal Coverage and was the principal advocate involved with the drafting and passage of SB 946, representing the Alliance of California Autism Organizations. Sally works with Kristin as an advocate. This webinar will cover the vision behind the Act, how it came to be and the changes that we can expect in California.

Presenters: Sally Brammell, Kristin Jacobson

Medi-Cal 101: Covering the Basics (August 2011)

Video Recording [wmv]  •  Slides [pdf]

This webinar will highlight Medi-Cal basics. What services does Medi-Cal provide in California? This webinar will provide information on Medi-Cal eligibility, services provided by Medi-Cal and Institutional Deeming. The webinar will include an opportunity to ask questions. Featured presenters: Kathryn Smith, RN, MN

Children With Pre-Existing Conditions: Connecting Kids with Coverage in California (July 2011)

Video Recording [wmv]  •  Slides [pdf]

Handout: Children with Pre-Existing Conditions – Fact Sheet [pdf]

This webinar will highlight health insurance issues and options for children with pre-existing health conditions in California. Using state and county data, outreach resources from the 100% Campaign, and organizing efforts to improve the lives of children, this webinar will the describe: (1) the existing need for and barriers to coverage, (2) new opportunities to connect uninsured kids with pre-existing health conditions to coverage, and (3) ways to further inform policymakers about the importance of children’s coverage. The webinar will culminate in an interactive discussion about how to improve coverage for children with pre-existing conditions and best tailor outreach efforts to have the greatest impact on this population of children.

Presenters: Mike Odeh, Health Policy Associate, Children Now

Developing and Integrating Patient and Advisory Councils (May 4, 2011)

Video Recording [wmv]  •  Slides [ppt]

Handouts: Example 1  •  Example 2

Covers how patients and families can work together with healthcare organizations to improve care for children and youth with special health care needs. This webinar is for both families and health care organizations—whether you are a family member of a hospital who wants to get more involved and provide input into patient care or a healthcare organization who would like to engage families. Learn how to start, sustain and provide training to Advisory Councils or find out if your health care organization already has one.

Presenter: Libby Hoy, Founder, Patient and Family Center Care Partners (

The Importance and Benefit of Participating in Autism Research: Perspectives of a Leading Scientist and Parents of Children with Autism (April 6, 2011)

Video Recording [wmv]  •  Slides [ppt]

Handouts: Overview of Autism Research Program  •  Flyers for Autism Research Program (in English and Spanish)  •  Autism Recurrence Fact Sheet  •  Thimerosal Fact Sheet

This presentation was in honor of Autism Awareness Month and featured Dr. Lisa Croen, Senior Research Scientist and Director of the Autism Research Program at Kaiser Permanente Division of Research and parents of children with autism spectrum disorders (ASD). It presents the state of autism research, two high profile, national studies, SEED and EARLI, and the importance of families participating in autism research. Topics covered include: how researchers are seeking to discover the genetic and environmental risk factors for ASD and how families can contribute to science by participating in one of these studies.

Please visit the Autism Research Program website to view videos and and new materials including the 2nd Edition of the Autism Parent Handbook.

Presenters: Lisa Croen, PhD,Director Autism Research Program and Senior Research Scientist, Division of Research, Kaiser Permanente; Vanessa Wallace, Mother of 4 children with an autism spectrum disorder; Member Autism Research Program Community Advisory Board.

Health Care Reform:What it means for children and youth with special health care needs (February 2nd, 2011)

Video Recording [wmv] •  Slides [ppt]


How health care reform benefits children/youth with special health care needs, federal actions to implement the reform law, and what can be expected in the future. REMEMBER: You Have Protections if Your Child is Denied Coverage. Remember, the health care law means that no child should be denied insurance for health reasons. If your child is denied coverage for any reason, call the state health insurance hotline at 1-888-466-2219 or visit the website.

Presenter: Janis Guerney, Family Voices National

Improving Access for Children with Epilepsy (January 5, 2011)

Video Recording [wmv]  •  Slides [ppt]

HANDOUTS: Seizure Description Tool  •  California Policy Brief  •  Teacher’s Guide  •  Epilepsy Parent Resource Guide  •  Epilepsy Parent Resource Guide (Chinese)  •  Epilepsy Parent Resource Guide (Farsi)  •  Medication Substitution Sheet  •  Medication Substition Sheet (Spanish)  •  Epilepsy Seizure Access Plan

Project Access is a four-state collaboration that addresses improved access to health care services for children with epilepsy or seizure disorders in rural areas. This project brings together Children’s Hospital Los Angeles with a number of University Centers for Excellence in Developmental Disabilities (UCEDDs) and family-focused community nonprofits (including Epilepsy Foundation Affiliates and Family Voices).

Presenters: Cary Kreutzer, USC UCEDD, Children’s Hospital Los Angeles; Bill Stack, Epilepsy Foundation Northern California


Autism and Health Insurance: Making your benefits work for your child (December 1, 2010)

Video Recording [wmv]  •  Slides [pdf]

Handouts: Department of Managed Health Care Complaint Form  •  Making Your Benefits Work Information Sheet

Presenters: Karen Fessel, Dr PH, Executive Director and Founder, The Autism Health Insurance Project; Feda Almaliti, Autism Health Advocates

Navigating California Children's Services: The Financial Process & Health Insurance Plans (November 3, 2010)

Video Recording [wmv]  •  Slides [ppt]

This webinar helps you understand the detailed financial relationships between the programs covered by California Children Services and insurance plans.

Presenters: Sue Johnson and Terry Enns (Alameda County California Children Services)

Understanding Service Delivery Models for Physical and Occupational Therapy: an Overview of PT and OT Service Models Used by California Children Services and School Districts (October 2010)

Video Recording [wmv]  •  Slides [ppt]

This webinar covered the continuum of service delivery models used to provide physical and occupational therapy to students, the focus of each model and how teachers and peers may participate in these services.

Presenters: Diane Storman, Patti Palomar, Nancy Lavine and Melissa Haider.

Health Care Connections: A Resource for Understanding and Navigating Health Care for Children and Youth with Special Health Care Needs (September 2010)

Video Recording [wmv] •  Slides [pdf]

Handouts:  Health Care Connections Manual (English, Spanish & Chinese)  •  “Know Your Health Care Plan” Handout  •  Addendum/Updates (March 2010)  •  Update to Manual: P51-55  •  Update to Manual: P56-62  •  Denti-cal Information

A training tool to understand core values for providing health care to CSHCN, various health care services for CSHCN, understanding a health care plan, working with providers and advocating in health care systems, and resources and information regarding health care for CSHCN.

Presenters: Juno Duenas and Mara McGrath

The Medicaid Waiver Program: a Primer

Video Recording [wmv] •  Slides [ppt]

Why would Regional Center staff ask you or a family you are assisting to enroll in the Medicaid Waiver program? Learn the ins and outs of this important program for individuals receiving regional center services. This webinar covers: Eligibility criteria; Purpose of the Medicaid Waiver Program; and Institutional Deeming for Medi-Cal.

Presenters: Randy Laya and Suzanne Butler, Regional Center of Orange County

What Will Health Reform Mean for California's Children and Youth with Special Health Care Needs?

Video Recording [wmv] •  Slides [ppt]

This presentation examines key coverage provisions included in the recently federal health reform law that would likely benefit children and youth with special health care needs in California. Edwin’s recommended resources for up-to-date information on HCR:, Center for Budget and Policy Priorities, Kaiser Family Foundation, Health Access.

Presenter: Edwin Park, Center for Budget and Policy Priorities

What Can We Do? Updated on Budget and Bills Affecting Children and Youth with Special Health Care Needs (CYSHCN)

Video Recording [wmv] •  Slides [ppt]

Topics covered: *Governor’s proposed premium increases for Medi-Cal and CCS *Health Care Reform: status of pre-existing condition exclusions and insurance for youth with special health care needs *Upcoming Opportunities & Strategies to Impact Budget.

Presenter: Jessica Rothhaar, Health Access

First 5 and Developmental Services: Building Partnerships for Our Youngest Children

Video Recording [wmv] •  Slides [ppt]

Recent budget cuts and budget battles over early start programs and the Department of Developmental Services; how to avoid pitting children’s programs against each other; How Regional Centers and First Five Commissions can collaborate together.

Presenter: Sherry Novick, First Five Association of California

Getting Basic Health Services and Medically-Necessary Treatment from Your Health Plan

Video Recording [wmv]  •  Slides [ppt]

How the Department of Managed Health Care’s Help Center can help you with health plan problems or questions. How you can file a complaint to resolve a problem. What to do if your requested treatment or service has been denied, delayed, or modified. Presented by Lyn Gage and Susan Burger, Department of Managed Health Care

Lanterman Act: Changes in the Law

Video Recording [wmv] •  Slides [ppt]

How do the recent cuts to Regional Center, In Home Support Services, SSI, and Medi-Cal impact services? What new information is available?

Presenter: Katy Lusson, Client’s Rights Advocate, Disability Rights California

H1N1: Preparing for the Flu Season (January 6, 2010)

Video Recording [wmv] •  Slides [ppt]

Are you overwhelmed or confused by information about H1N1? Would you like understand how the spread of H1N1 may impact your family….your workplace….your community? Would you like to know what you can do about it?

Presenter: Elisabeth Whitney, SF Card


Addressing the Multiple Issues in Collecting Race, Ethnicity and Language Data: Rationale, and Promising Practices (December 2, 2009)

Video Recording [wmv] •  Slides [ppt]

Presenter: Vivian Jackson, National Center for Cultural Competence

Impacting Legislators: Discuss New Research (November 4, 2009)

Video Recording [wmv] •  Slides [ppt]

Presenter: Tony Anderson, Executive Director, The ARC of California

Nutrition: The Big Picture (Eating, Pooping and Growing) (October 7th, 2009)

Video Recording [wmv] •  Slides [ppt]

Presenter: Hope Willis (MA, RD, CSP, UCEDD, Director, Dietetic Internship)

Epilepsy 101 and Epilepsy and Seizure Disorders Resource Guide (August 5, 2009)

Video Recording [wmv] •  Slides [ppt]

Presenter: William Stack, Associate Director of the Epilepsy Foundation of Northern California.

Medicaid Waivers Training (July 1st, 2009)

Video Recording [wmv]  •  Slides [ppt]

Presenter: Kathryn Smith, RN, Assistant Professor of Clinical Pediatrics in the Keck School of Medicine at the University of Southern California and the Associate Director for Administration at USC University Center for Excellence in Developmental Disabilities at Childrens Hospital Los Angeles.

CCS Redesign Changes, Transition Resources, & Assemb. Thurmond On ICC

This newsletter was sent May 17, 2016. 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.


Assemb. Tony Thurmond Appointed To State Interagency Coordinating Council On Early Intervention

Governor Brown announced the appointment of Assemblymember Tony Thurmond to the State Interagency Coordinating Council (ICC) On Early Intervention in a May 11 press release. Comprised of parents of children with disabilities, early intervention service providers, health care professionals, and state agency representatives, the ICC encourages a family-centered approach, interagency collaboration, and provides advice and assistance to the Department Of Developmental Services. Assemblymember Thurmond has proven to be a strong champion for children and youth with special health care needs (CYSHCN) and fills a legislative position on the ICC that has been empty for nearly a decade. To read more about the ICC, click here.


Amendments Made To SB 586, California Children’s Services Redesign Bill

Senate Bill 586 addresses the future of California Children’s Services (CCS) and the proposed plan to transition some children currently covered by CCS into managed care. Amendments to the bill were much in line with statewide advocates’ recommended principles and deal with processes and protections that ensure CYSHCN are given the best systems of care possible. All further amendments to the bill will be addressed in the policy bill process. To read the revised version of the bill, click here.

Governor Brown Passes State Budget, Revisions Include Modest Spending Increases

On May 13, Governor Brown released California’s 2016-2017 revised budget plan. Although it contains minimal spending increases, the budget does implement several proposals aimed at improving economic stability, including funding for Medi-Cal and services for people with developmental disabilities. A large revision allows for resources to cover the thousands of undocumented children who are now eligible for Medi-Cal. To read highlights from the revised budget, click here.

How The Final Managed Care Rule Applies To Children And Youth With Special Health Care Needs

The Centers For Medicare And Medicaid Services (CMS) recently published its final rule which updates managed care guidelines. According to preliminary analysis from the National Academy For State Health Policy (NASHP), the rule gives states significant flexibility in making changes designed to modernize Medicaid and Children’s Health Insurance Programs while improving quality of care. As for how the rule applies to CYSHCN, states retain the ability to enroll some or all of their CYSHCN in managed care, and states that mandatorily enroll these children will need to ensure their families have the option to change health plans. To read a blog post from NASHP on how the final rule further applies to CYSHCN, click here, and to check out a list of upcoming CMS webinars on the final rule, click here.

Senator Lara Stops In San Francisco On Statewide Tour To Promote Enrollment In New Medi-Cal Expansion For Undocumented Children

Joined by various elected leaders and community partners, Senator Ricardo Lara gave a press conference on May 12 at the Mission Neighborhood Health Center in San Francisco. As part of his seven-stop outreach and enrollment “#Health4AllKids” tour, Senator Lara and advocates provided insight to attendees and families on the new expansion, which officially went into effect yesterday. An estimated 170,000 are now eligible for health care. To read more about the enrollment tour and new law, click here.



Are You Prepared For An Emergency? Create A Short Video To Help Inspire Other Families Of CYSHCN To Think About Disaster Planning And Win $100

Preparing for an emergency is especially critical for families of CYSHCN. In order to spread disaster preparedness awareness, Family Voices National is running a video contest in hopes of spotlighting real stories that show how emergencies can impact families of CYSHCN. Accepted videos will win $100. Submissions can be simple cell phone stories ranging from 1.5-3 minutes in length, and videos must be submitted by May 31. For more information, click here.

Support AB 2004: Hearing Aids For Minors

On May 4, the California Assembly Health Committee voted in favor of AB 2004, sending the bill to the Assembly Appropriations Committee. AB 2004 requires that health care service plan contracts or health insurance polices renewed on or after January 1, 2017 cover hearing aids for enrolled minors. As the bill is being reviewed by the Appropriations Committee, it’s important that they hear from families about why they support AB 2004 and how it would impact them. To show that you’re behind the bill, consider writing a letter of support. You can find a sample letterhere. Email your letter to Lisa Murawski, the appropriations consultant for the bill, and Nardos Girma, assistant to author Assemblymember Richard Bloom. To read more about AB 2004, click here.


Publication: Designing Systems That Work For Children With Complex Health Care Needs

The Lucile Packard Foundation For Children’s Health led a December symposium titled “Designing Systems That Work For Children With Complex Health Care Needs” aimed at discussing issues such as care coordination, national health policy, self-management support, and financing. To read the proceedings from the symposium that elaborate on potential solutions and ongoing issues in systems of care, click here.

Accessible Technology Resource Page Added To Website

Addressing enforcement, technical assistance, regulations, and technology initiatives, this new section of is a hub for all things assistive technology (AT). Among other things, you can access sample letters to help covered entities understand their ADA obligations with regard to AT, access a catalogue for accessibility best practices, and browse federal initiatives. To view the page, click here.


New Condition-Specific Transition Toolkits Available From The American Association Of Pediatrics And Got Transition

In order to address the gap that occurs between pediatric and adult health care, the American Association Of Pediatrics released six new condition-specific toolkits modeled after Got Transition’s Six Core Elements Of Health Care Transition. Toolkit topics include: general internal medicine for adults with developmental and physical disabilities, cardiology, endocrinology, hematology, nephrology and rheumatology (gastroenterology coming soon). To access the toolkits, click here.

Join The Lucile Packard Foundation For Children’s Health Newsletter!

Published twice a month, this newsletter provides excellent resources for families of CYSHCN. To sign up and also view past issues of the network newsletter, click here.


May 18: The Relationship Between Fetal Alcohol Spectrum Disorders And Attention-Deficit Hyperactive Disorder

Sponsor: National Organization On Fetal Alcohol Syndrome

More information and registration here.

May 19: Reducing Stress In Children With Learning And Attention Differences

Sponsor: Learning Ally

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

May 23: Medical Home: Patient Centered Communication

Sponsors: The Johns Hopkins School Of Medicine and the New-York Mid Atlantic Consortium For Genetic And Newborn Screening Services

More information and registration here.

May 24: The Disability Integration Act And Why It Matters To You

Sponsor: United Spinal Association

More information and registration here.

May 25: Coordinating Care For Kids: School Nurses Linking With The Medical Home

Sponsor: National Center For Medical Home Implementation

More information and registration here.

May 26: Coding For Chronic And Transition Care Management And Pediatrics

Sponsors: The Lucile Packard Foundation For Children’s Health and the American Academy Of Pediatrics

More information and registration here.

May 26: Becoming ABLE Ready: Choosing The Right Program For You

Sponsor: National Disability Institute

More information and registration here.

May 31: Changing Relationships: How To Foster Effective Communication With Patients And Families

Sponsor: National Center For Medical Home Implementation

More information and registration here.

June 14: Emerging Treatments In Sickle Cell Disease

Sponsor: California Sickle Cell Resources

More information and registration here.


June 25-28: Spina Bifida Association—41st Annual National Conference, Bloomington, MN

For more details, click here.

November 10-13: The National Federation For Children’s Mental Health—27th Annual Conference, Phoenix, AX

Further details, including a call for presentation proposals, will be available in the next two weeks. Visit FFCMH’s website to find out more.


When Pregnant Women Get Flu Shots, Babies Are Healthier


In our last newsletter, we incorrectly stated that Daniel Weintraub was the editor of California Healthline. He is the editor of the California Health Report.

Select Committee on CYSHCN Update & Care Coordination

This newsletter was sent April 8, 2016. 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.


CDC: No Change In Autism Prevalence, Children Not Receiving Early Evaluations

While the estimated percentage of children with autism still remains high, the CDC reports there has been no change in the prevalence of reported diagnoses. They also note that children with autism are not receiving comprehensive developmental evaluations as early as they could be. To read a summary of the CDC’s key findings, click here.

Second Meeting Of Senate Select Committee On Children And Youth With Special Health Care Needs

The Select Committee, chaired by Senator Dr. Richard Pan, met for a second time on April 5 to discuss the barriers and challenges of interagency care coordination. Often, a child’s care map extends far and wide to include an immediate and external network. The committee’s goal is to break down silos of care so that children with special health care needs can have easier access to their support systems. To listen to or watch a recording of the meeting, click here.

CCS Redesign: State Rebuffed, Won’t Move Fragile Kids To Managed Care—For Now

After hearing testimony from families and providers, the Assembly budget subcommittee voted to hold off on phase one of the Department of Health Care Service’s proposal to transition nearly 20% of children with disabilities to managed care. The bill was voted on on March 14 and unanimously rejected. It has now been added to the Governor’s proposed budget. Read more in the California Healthline article here.

Family Voices of California: 14th Annual Health Summit & Legislative Day

fist bump

We’d like to extend our heartfelt gratitude to all families, advocates, professionals, speakers, and sponsors that made this year’s Health Summit extremely successful! The conference took place on March 14 and over 138 people attended. Highlights included a keynote by Senator Dr. Richard Pan on the formation of the Senate Select Committee On Children And Youth With Special Health Care Needs, panel discussions on Medi-Cal Managed Care, the future of California Children’s Services programs, and mental health. The following day, 57 family members made over 25 legislative appointments at the Capitol. To see photos from the conference, click here, and to check out a list of our generous sponsors click here. A highlights report will be made available soon.

Family Voices Brings Project Leadership Training To AMCHP Conference April 6-9

Family Voices of California Project Leadership State Liaison Allison Gray traveled to Washington, D.C. to attend the Association of Maternal and Child Health Programs annual conference where she gave a poster presentation on Project Leadership, a parent advocacy training program developed by Family Voices of California council members. The title of her presentation was “Effecting Health Care Policy Change, One Parent at a Time.” Project Leadership is designed to help family members develop the skills and tools they need to partner at all levels of decision making and engage in public policy advocacy activities in California on behalf of children and youth with special health care needs.

Family Voices National: 2016 Leadership Conference

Over 150 family representatives from all 50 states attended the Family Voices National conference on March 30-31. This year’s theme was “Expanding Our Reach, Impacting The Future” and workshops ranged in topic from system changes at the local, state, and national level as well as recruiting adult and youth leaders and developing “value add” partnerships. For a look at the full conference brochure, click here.


April 13: Take Action On Care Coordination

This webinar will feature a parent’s perspective, along with real-life examples from a provider and a payer, on how to develop effective local care coordination systems. It’s designed as a first step in building a national movement to promote care coordination policies and payment options that better serve children, families, and care providers. The discussion will center around the report, The Care Coordination Conundrum And Children And Youth With Special Health Care Needs, a summary of which can be ready here. To register, click here.

April 20: Approaches To Community Access, Participation, And Engagement For Children With Developmental Disabilities And Their Families

Led by Roger Ideishi, this webinar will address all things accessibility. For children with developmental disabilities, accessibility demands more than exposure and presence in the community. It should take into consideration opportunities that foster meaningful connections with the experience and create links to the physical, social, and cultural aspects of the environment. To register, click here.

April 21: Parents Taking Action: Empowering Latina Mothers of Children with Autism Spectrum Disorder

Despite the fact that Latino children are one of the fastest growing autism spectrum disorder populations, they are one of the most underserved groups with respect to diagnostic services, health care, and specialty autism services. This webinar will discuss the development of a culturally-based approach to addressing information needs of Latino parents. To register, click here.

April 28: The Rules Of Sex For People With Developmental Disabilities

A clinical psychologist specializing in sexuality and people with developmental disabilities, Nora Baladerian will discuss the do’s and dont’s of sex, different kinds of sexuality, possible outcomes of having sex, and when, where, and whom it’s okay to have sex with. To register, click here. 


The Road To Recovery: Supporting Children With Developmental Disabilities Who’ve Experienced Trauma


This toolkit for providers offers information on supporting a child’s well-being, happiness, and recovery through a trauma-informed practice. To download, click here (you must create a profile).

What Families Need To Know About Changes In Special Enrollment Periods

This tip sheet provides information on two major policy changes related to special enrollment periods in the marketplace. You’ll be able to quickly review a list of qualifiers that have been eliminated and added. To download, click here.

Getting And Keeping Health Care Coverage For Low-Income Californians: A Guide For Advocates

Organized by the Western Center For Law And Poverty, this guide provides advocates with the relevant statutes, regulations, and guidance needed to help their clients access health care coverage. To download, click here.


CCS Medical Directors Tackle Thorny Issues” 

“Bill Seeks Benefits For Caregivers”

More Sickle Cell Patients Survive, But Care Is Hard To Find For Adults

“Tiny Opioid Patients Need Help Easing Into Life

New Model For Meeting The Needs Of The Most Fragile Children

Program Helps Families Address Developmental Concerns”  

Hillary Clinton Takes A Stand Against ‘Subminimum Wage’ For People With Disabilities

President’s Task Force Aims To Help End Discrimination In Mental Health Coverage

What Happens When The Online Bully Is A Child With Special Needs

A Day With A Sixth-Grader: How One School Supports a High-Needs Student” 

Student Suspensions In California Charter Schools Follow Familiar, Troubling Patterns

Like Us!
Follow Us!
Email Us!