WEBINAR ARCHIVE

2022

COVID-19 Eviction Protections and Fair Housing Rights for People with Disabilities in CA (March 9, 2022)

View Recording and Slides

This webinar will cover the current COVID-19 eviction protections in California, as well as fair housing topics for people with disabilities such as who fair housing laws apply to, what qualifies as a disability, and the process for making reasonable accommodation requests from housing providers.

Presenters:
Naomi Sultan and Kate Bridal from Mental Health Advocacy Services, Inc.

2021

Medi-Cal Basics And Home and Community-Based Services Waivers For Children (June 10, 2021)

View Recording and Slides [English | Spanish | Chinese]

This presentation will discuss the importance of Med-Cal coverage for children with special health care needs and disabilities and describe the Medi-Cal Home and Community-Based Services Waivers that serve this population. We will discuss the basics of Medi-Cal eligibility, the importance of EPSDT (Early & Periodic Screening, Diagnosis and Treatment) protections, and the services available through Medi-Cal waiver programs including the Home and Community Based Alternatives (HCBA) Waiver and the Home and Community-Based Services Waiver for Developmentally Disabled Waiver (DD Waiver).

Presenters:
Elizabeth Zirker is a Managing Attorney with Disability Rights California. She focuses on disability rights, working to increase and strengthen home-and community-based services.

Anna Leach-Proffer is an Associate Managing Attorney with Disability Rights California. Anna is a member of DRC’s Healthcare and Home and Community-Based Services practice group, and advocates on behalf of individuals with disabilities through individual representation, policy advocacy and impact litigation.

Self-Determination is here! Updates on Accessing This Alternative to Regional Center Services (May 13, 2021)

View Recording and Slides [English | Spanish | Chinese]

25 years in the making, and now this June, the Self-Determination program finally becomes available to all California Regional Center clients. A year ago, Chris presented an introduction to the Self-Determination program, a revolutionary change that trades the usual array of services and supports offered, with a wide open budget, and the freedom and autonomy to pay for who and what one wants in their life to support a life of their choosing Learn what’s new in the Self-Determination Program, how to enroll, and why Self-Determination may change you or your loved one’s life. 

Presenters:
Christopher Wecks, Independent Facilitator 

Fair Housing and Tenancy Rights for People with Disabilities During the Covid-19 Pandemic (April 21, 2021)

View Recording and Slides [English | Spanish | Chinese]

Who is protected by fair housing law? How is “disability” defined under fair housing law? Is COVID-19 a disability? What is considered illegal discrimination? What is a reasonable accommodation? Are emotional support animals allowed in no-pets buildings? What if a landlord denies a reasonable accommodation request? How do COVID-19 emergency protections help people with disabilities? And much more.

Presenters:
Naomi Sultan, Supervising Attorney at Mental Health Advocacy Services
Kate Bridal, Staff Attorney at Mental Health Advocacy Services

2020

Demystifying Telehealth: What families of children and youth with special health care needs need to know (November 9, 2020)

View Recording and Slides [English | Spanish | Chinese]

This webinar will create better awareness and understanding about telehealth, how families can use it, its value for children and youth with special health care needs/disabilities and what policies are needed to ensure access and sustainability.

Preparing for a Successful Telehealth Visit [PDF] [English]

Making the Most of Your Telehealth Appointment [PDF] [English | Spanish | Chinese]

Facilitator:
Erin Kelly, Executive Director, Children’s Specialty Care Coalition

Presenters:
Dr. James Marcin, UC Davis
Mei Kwong, Center for Connected Health Policy
Ginger Moyles, Special Needs Parent Advocate
Nancy Netherland, Special Needs Parent Advocate

Education & Mental Health Challenges During COVID-19 For Families of Children with Special Health Care Needs Part 2: Service Provision and Advocating for Your Rights (September 25, 2020)

View Recording and Slides [English | Spanish | Chinese]

The webinar series will address the challenges in education families of children with special health care needs (CSHCN) are facing during the current COVID. Part 2 will address the specific logistical questions that families encounter as they negotiate how best to support the educational development of their children through this time, and will focus on district offerings, service provision, and legal options available to them.

Facilitator:
Alison Stewart, Special Needs Inclusion Project
Presenters:
Lilian Ansari, Special Needs Parent Advocate
Cheryl Theis, DREDF
Suge Lee, Disability Rights CA

Education & Mental Health Challenges During COVID-19 For Families of Children with Special Health Care Needs Part 1: “Choosing peace over choosing to be the perfect parent:” Family Mental Health Challenges (September 21, 2020)

View Recording and Slides [English | Spanish | Chinese]

This webinar series will address the challenges related to distance education and mental health that families of children and youth with special health care needs are facing during the current COVID-19 pandemic. Part 1 will speak to the mental health challenges that both parents and children are facing during this time, and will provide strategies to help families cope under these stressful circumstances.

Facilitator:
Alison Stewart, Special Needs Inclusion Project
Presenters:
Lilian Ansari, Special Needs Parent Advocate
Lindy Joffe, MS/ OTR/L
Dr. Barbara Kalmanson, Ph.D.

CYSHCN Wildfire and Public Safety Power Outage Prep Webinar incl COVID-19 Guidance (June 25, 2020)

View Recording and Slides

Presenters:

Ali Barclay – Family Engagement Manager at Family Voices of California. Presented stories and scenarios from families of CYSHCN impacted by last year’s wildfires and planned power shut offs.

Chris Grant – Founder of PrepIt Forward. Chris discussed how to identify needs of families with CYSHCN and preparation actions they should take with a special focus on the additional challenges created by the COVID pandemic. Chris also shared several simple actions we can take now to prepare ourselves and the families we serve.

Tackling Your Family’s Special Education Needs During COVID-19 Pandemic (April 30, 2020)

View Recording (pw: 3c!&5&#@) and Slides

A panel discussion on navigating the current special education environment from legal, practical, and advocacy perspectives.

Speakers:

  • Piper Paul, Special Education and Family Law Attorney
  • Katie Sacra, Certified deaf-blind intervener, mother of adult with special health care and educational needs
  • Nancy Steele, Educator
  • Elaine Linn, Project Leadership Manager, Family Voices of California

New Advocacy Strategies for Changing Policies (April 27, 2020)

View Recording and Slides

Presented by Family Voices of California for UC Davis MIND Institute LEND program trainees and staff.

This seminar provides an update and “insider’s view” of changes in lawmaking at the state and federal levels during the COVID-19 pandemic. Family Voices of California and staffers representing California Assemblymember James Ramos  and U.S. Senator Kamala Harris share insights and strategies for effective individual advocacy during a time of crisis decision making and beyond.

Speaker:

  • Elaine Linn, Project Leadership Manager, Family Voices of California

What is the Whole Child Model in California? (April 9, 2020)

View Recording and Slides

We invite you to learn about the Whole Child Model including services and supports available to children and youth birth to 21 years old who are covered by both California Children’s Services (CCS) and have full-scope Medi-Cal.

The following counties are part of the Whole Child Model: Del Norte, Humboldt, Lake, Lassen, Marin, Mendocino, Merced, Modoc, Monterey, Napa, Orange, San Luis Obispo, San Mateo, Santa Barbara, Santa Cruz, Shasta, Siskiyou, Solano, Sonoma, Trinity and Yolo.

This webinar is for families and beneficiaries receiving services as part of Whole Child Model, as well as Family Resource Center staff.

Speaker

  • Jacqui Knudsen, Whole Child Model Project Manager, Family Voices of California

Self-Determination: An Alternative to Standard Regional Center Services (February 19, 2020)

View Recording and Slides

What is Self-Determination? Currently, Regional Center client plans (Individualized Program Plans, or IPPs) are written and fulfilled by case workers, using a narrow set of services, and approved vendors. However, under Self-Determination most of this is essentially done away with. Clients are given their own budgets to pay whomever they wish for whichever sets of supports they deem will fulfill their vision of what will make their life fulfilling by writing “Person Centered Plans”.

Find out how choosing to opt-in to Self-Determination, may change you or your loved one’s life.

Speaker:

  • Christopher Wecks is a trained Independent Facilitator in the Self-Determination program.  He’s spent the last 10 years advocating for his daughter and the children of those around him in special education, IHSS, Medi-Cal and Regional Center issues.  He has occasionally involved himself at state level issues, such as the initial CCS redesign process, and his recent participation in the State Superintendent’s “Improving Special Education” transition team, but most of his time is spent locally.  Chris’ Fridays are often spent at the Oncology Ward at UCSF Children’s Oakland, offering resources to families going through brain tumor treatments.  He’s also national peer coach with the Pediatric Brain Tumor Foundation, serving families in a similar capacity.

Fair Housing Protections for Children and Adults with Disabilities (January 8, 2020)

View Recording and Slides

California’s Fair Housing law’s definition of disability; Limitations on any major life activity (includes learning, communicating); Disability-based discrimination in housing; Denial of a reasonable accommodation is housing discrimination; What makes an accommodation reasonable/unreasonable, including: when can verification of disability and/or disability-related needs be required, who can provide verification, what documentation can be required, and a brief update on the new state and local tenancy protections (for people with and without disabilities). There will be time for Q and A.

Speaker:

  • Naomi Sultan is a Supervising Attorney at Mental Health Advocacy Services, Inc. (MHAS), where she leads the housing law program, including the Fair Housing Initiatives Program (FHIP), and represents Medical-Legal Community Partnership (MLCP) clients in housing discrimination matters. Naomi worked as a teacher for children with learning disabilities before embarking on a legal career.

2019

Medi-Cal 101 for Children and Youth with Special Needs (August 29, 2019)

View Recording and Slides

An overview of the Medi-Cal program relating to children and youth with special needs including a Q and A.

Speaker:

  • Dr. Kathryn Smith, RN, MN, DRPH

Getting Help with Medi-Cal In-Home Nursing (June 5, 2019)

View Recording and Slides

This webinar will provide an overview of the I.N. v. Kent lawsuit settlement and explain the rights of families of children who are approved for Medi-Cal in-home nursing under the proposed settlement.
The I.N. v. Kent lawsuit challenged the failure of the Department of Health Care Services (DHCS) to arrange for in-home nursing care the state itself has determined they need.
Under the settlement, DHCS will designate managed health care plans, California Children’s Services (CCS), and/or HCBA Waiver Agencies as case management service providers for class members and will require those providers to help class members obtain in-home nursing.
The Court granted preliminary approval of the settlement and directed DHCS to notify affected families, giving them a chance to weigh in before the Court considers whether the settlement should get final approval. Families whose children are part of the class will receive official notices about the settlement around June 13.

Speaker:

  • William Leiner, Managing Attorney at Disability Rights California and lead counsel in I.N. v. Kent

What is the Whole Child Model? (April 17, 2019)

View Recording and Slides

Speaker:

  • Ali Barclay, Outreach & Education Manager, Family Voices of California

Department of Managed Health Care: Help Center 101 (February 27, 2019)

View Recording and Slides

Do you know someone who is having a problem with their health plan? We have the answers for you! We will present how problems are resolved such as: denied treatments and services; claims, billing and co-payment issues; cancellations of health coverage; complaints about a doctor or plan; doctor or hospital is no longer with your health plan and more.

Speaker:

  • Suzanne Sherinian, Assistant Chief Counsel of the Help Center at the Department of Managed Health Care

2018

The Public Charge Rule What it is and How it will affect Children and Families December 5, 2018)

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Children Now will give an overview of the new proposed Public Charge Rule. Learn about the proposed change to the policy, the rationale & exceptions to the change, the effects of the proposed change and the federal rulemaking & public comment.

Speaker:

  • Emily Reece, Children’s Movement Coordinator and Database Administrator, ChildrenNow
  • Kacey Wulff, Director of The Children’s Movement, ChildrenNow

Current Issues in In-Home Support Services (IHSS), Parent Provider Issues, Assessments, and EVV (November 28, 2018)

View Recording and Slides

Elizabeth Zirker, Disability Rights California, will be presenting on the current issues regarding IHSS, including parent providers issues, assessments, and Electronic Visitation Verification (EVV).

Speaker:

  • Elizabeth Zirker, Managing Attorney of the Healthcare/Home & Community-Based Services Practice Group with Disability Rights California

My Patient Rights Removing Barriers to Treatment and Care (November 14, 2018)

View Recording and Slides

Every day, patients throughout the United States are denied life-saving care or receive outrageous medical bills from out-of-network providers. Fortunately, there is an advocacy tool that can help.
Join Liz Helms, President and CEO of the California Chronic Care Coalition to learn about My Patient Rights (MPR), a one-stop shop for patients to file complaints with their health plans and state regulators to get the care they need and deserve.
My Patient Rights is a website inspired by real patients who have experienced denials, delays, high out-of-pocket costs, out-of-network charges and other barriers to quality, affordable health care. During this webinar, you will learn your rights as a patient, how to file a complaint to get the care you need and how to use My Patient Rights to help advocate for others.

Speaker:

  • Liz Helms, President and CEO of the California Chronic Care Coalition

Using Kidsdata for Action (October 24, 2018)

View Recording and Slides

Severe childhood epilepsies are characterized by a high seizure burden and are often associated with neurodevelopmental delays. When traditional medications fail to control a child’s seizures, families look to alternative treatments to help their children. One of these alternative treatments that has become more widespread over the past year involves the use of a compound from the Cannabis plant, Cannabidiol (CBD). CBD is a non-psychoactive compound that has been shown to have anticonvulsive properties in a number of animal models of epilepsy. There is exciting data about the use of CBD in children with intractable epilepsy and recently an advisory panel at the FDA unanimously voted to recommend approval for CBD to treat seizures in certain forms of childhood epilepsy. The data on CBD for epilepsy is promising, and CBD is being considered as a treatment of other neurologic conditions. 

Speaker:

  • Dr. Lori Turk-Bicacki, Ph.D. is a senior manager for Kidsdata, a program of the Lucile Packard Foundation for Children’s Health. She promotes data-based decision making and action to improve children’s health and well-being, and she contributes to the quality, relevance, and utility of the data and content on kidsdata.org.

An Update on Cannabidiol (CBD) Use in Pediatric Treatment Resistant Epilepsy (July 19, 2018)

View Recording and Slides

Severe childhood epilepsies are characterized by a high seizure burden and are often associated with neurodevelopmental delays. When traditional medications fail to control a child’s seizures, families look to alternative treatments to help their children. One of these alternative treatments that has become more widespread over the past year involves the use of a compound from the Cannabis plant, Cannabidiol (CBD). CBD is a non-psychoactive compound that has been shown to have anticonvulsive properties in a number of animal models of epilepsy. There is exciting data about the use of CBD in children with intractable epilepsy and recently an advisory panel at the FDA unanimously voted to recommend approval for CBD to treat seizures in certain forms of childhood epilepsy. The data on CBD for epilepsy is promising, and CBD is being considered as a treatment of other neurologic conditions. 

Speaker:

  • Brenda E. Porter, MD, PhD is a Professor of Neurology at Stanford University.
    Dr. Porter is a pediatric neurologist with a special interest in pediatric epilepsy. She is director of the pediatric epilepsy division at Lucile Packard Children’s Hospital and Co-director of the Tuberous Sclerosis clinic at Stanford.

Educational Advocacy After Brain Surgery Part 2 (June 6, 2018)

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This presentation is intended to provide information to help parents and professionals advocate for special education programs and services for children and youth after brain surgery. Training topics will include: understanding the Individual Education Program (IEP) process; basic special education rights; referral procedures for special education assessment; parent rights in the IEP process; and effective advocacy techniques. This presentation was conducted by

Speaker:

  • Audrey Vernick, Director of Educational Advocacy and Training at The Brain Recovery Project: Pediatric Epilepsy Surgery Foundation.

Educational Advocacy After Brain Surgery Part 1 (May 30, 2018)

View Recording and Slides

This presentation is intended to provide information to help parents and professionals advocate for special education programs and services for children and youth after brain surgery. Training topics will include: understanding the Individual Education Program (IEP) process; basic special education rights; referral procedures for special education assessment; parent rights in the IEP process; and effective advocacy techniques. This presentation will be conducted by

Speaker:

  • Audrey Vernick, Director of Educational Advocacy and Training at The Brain Recovery Project: Pediatric Epilepsy Surgery Foundation.

Harness the Power of Storytelling for Meaningful Advocacy (February 21, 2018)

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View Handouts

Learn about the impact of parent advocacy at the national level, and the Little Lobbyists movement that has inspired families of children with special health needs to engage and influence Congress. This Webinar also features practical tips and tools to craft your “1-2-minute story” for meaningful interaction with elected officials and other decision makers.

Speakers:

  • Austin Carrigg – Little Lobbyists
  • Donnell Kenworthy – Warmline Family Resource Center,
    Special Grace Ministries, Project Leadership Facilitator
  • Elaine Linn – Family Engagement Manager, Family Voices of California

You Shouldn't Have To Be A Rocket Scientist To Access Services For Kids With Disabilities! (January 24, 2018)

View Recording and Slides

Parents of children and youth with special health care needs often spend countless hours trying to understand, navigate, and access services. This webinar will discuss research on service inequalities within educational, medical, and social service systems as well as current policies that are intended to reduce these disparities.

Webinar presenter Sarah Taylor, MSW, PhD is a teacher, scholar, and facilitator with over 20 years of experience in social services and higher education. She’s More…currently an Associate Professor of Social Work at California State University, East Bay.

As a deep generalist, Dr. Taylor focuses on promoting well-being, building collaboration, and reducing inequities across human service systems. She explores these themes in a variety of contexts, including higher education, mental health, disability, and LGBTQ+ communities. Her experiences as a parent of a child with a disability have informed her work — particularly as related to advocacy, access, and inclusion.

2017

Understanding California’s Regional Centers: From Yesterday to Today and Tomorrow (November 29, 2017)

Video Recording and Slides 

Spanish Recording and Slides

California is home to 21 regional centers throughout the state that serve more than 300,000 individuals with developmental disabilities and their families. This webinar delves into the history of the regional center system, its current status, and issues that will shape the future. Additionally, you’ll learn what sets California’s service system apart from other states as well as how federal funding shapes its operation today.

Webinar presenter Amy Westling is the executive director of the Association of Regional Center Agencies (ARCA) which represents all California regional centers. She’s been with ARCA in various capacities since 2012

Communicating With Your Children: Developmental Disabilities And Sexuality (November 1, 2017)

Video Recording and Slides

Talking with our young and grown children about sexuality can be a difficult task. As parents and guardians, we often worry that discussing sex grants permission. We also hope our children will be safe from harm when they are in relationships. This webinar will help you become more comfortable discussing sex with your child by covering what topics to address and the most effective ways to talk about this sensitive topic.

Our webinar presenter, Katherine McLaughlin, M.Ed, has been an expert on sexuality and developmental disabilities for over 25 years. She teaches sexuality education to people with DD/ID and trains them to be peer sexuality educators. Katherine is the author of an agency and school curriculum: Sexuality Education for People with Developmental Disabilities, and has developed two online courses: one to train professionals, Developmental Disability and Sexuality 101, and one for parents: Talking to Your Kids: Developmental Disabilities and Sexuality.

Supplemental materials:

GULP Newsletter

Retrofitting The Medical Home For Children With Special Health Care Needs (October 25, 2017)

Video Recording and Slides

This webinar outlines the characteristics of the ideal medical home and what steps are needed to strengthen the infrastructure of this conceptual framework. Webinar presenter Mara McGrath, MPH, shares examples of how she’s worked with pediatric practices to bring them along in this continuum. She also explores some of the most perplexing challenges faced by the “ideal” medical home.

Mara McGrath, MPH, has been a health policy analyst for Lucile Packard Children’s Hospital at Stanford for the past 16 years. She currently coordinates the Alameda County Medical Home Project and has worked on promotion of medical homes in four additional counties (Recorded October 25, 2017).

Supplemental materials:

The Alameda County Medical Home Project: Resources For Children With Special Needs and Their Families

Primary Care Referrals For Specialty Mental Health Services (Fax Cover Sheet)

Referral Algorithm For Suspected Or Confirmed Autism (Children 0-3)

Talking With Parents About Child Development Concerns: Tips (English)

Talking With Parents About Child Development Concerns: Tips (Spanish)

Mural Photos: One, Two, Three

Medi-Cal Services For Children And Youth With Autism And The Family-Focused Model Of Care (August 23, 2017)

Video Recording and Slides

This webinar outlines the available Medi-Cal services for children with Autism Spectrum Disorder (ASD), 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 for the Mental Health Network, St Joseph Hoag Health/Providence St Joseph Health System, Southern California Orange County/High Desert Region.

Mental Health Parity: Ensuring Equal Access to Treatment for Children and Youth in California (August 16, 2017)

Video Recording and Slides

The lack of mental health parity in health insurance coverage has been a form of discrimination that persons with mental disabilities have long experienced. Federal and state law requires insurance companies to provide mental health and substance abuse benefits equal to physical health benefits — this is especially critical at a time when the need for children’s services is so great.

In this webinar, you’ll learn more about federal and state mental health parity laws as well as skill and tools to appeal the the denial of insurance coverage.

Our webinar presenter is Nancy Shea, senior attorney at Mental Health Advocacy Services, a public interest law firm in Los Angeles.

Project Leadership Informational Webinar For Prospective Fall 2017 RFA Applicants (August 3, 2017)

Video Recording and Slides

This webinar provides the background of Project Leadership, an overview of the content and components, the results from its first four years and an outline of opportunities for agencies interested in training implementation during Phase IV of the project, including Training-of-Trainers workshops that will be offered in San Francisco and Los Angeles in fall 2017.

2016

Caregiving Youth: A Community-Based Framework For Identifying And Supporting A Hidden Population (November 16, 2016)

Video Recording

Slides: Introduction

Slides: Part 1

Slides: Part 2

Slides: Part 3

Caregiving youth are children who provide significant assistance to relatives or household members who suffer from physical or mental illness, disability, frailties of aging, or substance misuse. Their responsibilities are similar to those of adult caregivers, although the physical and psychological effects of caring at a young age may have a more complex and detrimental influence on development and academic success. Connie Siskowski, RN, PhD, of the American Association for Caregiving Youth established a model in 2006 to identify caregivers through the public school system and support the needs of youth as well as their families. Researchers in Los Angeles have launched an adapted model to assess for sibling caregivers of children with special health care needs. This webinar is intended for families, community health workers and medical professionals, and will provide an overview of an interdisciplinary framework to serve the needs of caregiving youth and their families.

Related video: CNN Heroes Tribute: Connie Siskowski

Related materials: Information about the Caregiving Youth Project / U.S. and international facts about caregiving youthAAP News article on caregiving

Project Leadership Phase IV: Informational Webinar (October 26, 2016)

Video Recording and Slides

This webinar provides the background of Project Leadership, an overview of the content and components, the results from its first three years, and an outline of opportunities for agencies interested in training implementation during Phase VI of the project, including training-of-trainers workshops that will be offered in San Francisco and Los Angeles in January 2017.

Family Protections And Continuity Of Care In The New CCS Whole-Child Model (July 27, 2016)

Video Recording and Slides / Additional Resources

Beginning July 2017, children in select counties will be moved from California Children’s Services to Medi-Cal Managed Care plans. In this webinar, Linda Nguy from Western Center On Law And Poverty and Marilyn Holle from Disability Rights California discuss how to keep your child’s existing providers during this switch, your continuity of care rights, protections, how to file a grievance, how to appeal decisions, and much more.

Movement at the State Capital: Introducing the Senate Select Committee on Children with Special Needs (July 20, 2016)

Video Recording and Slides

This webinar provides an overview of the newly formed Senate Select Committee on Children with Special Needs, chaired by California State Senator Dr. Richard Pan. It summarizes the committee’s leading objectives, recaps key takeaways from the first hearing held Dec. 1, 2015 (read a committee report from this hearing), and outlines the role of family advocates in informing the committee. To watch an introduction video on the Select Committee, click here.

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.

2015

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.

2014

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.

2013

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.

2012

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.

2011

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 (www.pfccpartners.com)

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 www.autismresearch.kaiser.org 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]

Handouts:

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 and  Slides 

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).

2010

Autism And Health Insurance: Making Your Benefits Work For Your Child (December 1, 2010)

Video Recording and Slides 

Karen Fessel of The Autism Health Insurance Project discusses how to make your health benefits work for your child with autism. 

Handouts: 

Department of Managed Health Care Complaint Form

Making Your Benefits Work Information Sheet

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

Video Recording and Slides 

This webinar will help you understand the detailed financial relationships between the programs covered by California Children’s Services and insurance plans.

Understanding Service Delivery Models For Physical And Occupational Therapy: An Overview Of PT And OT Service Models Used by California Children's Services And School Districts (October 6, 2010)

Video Recording and  Slides

This webinar covers 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.

Health Care Connections: A Resource For Understanding And Navigating Health Care For Children And Youth With Special Health Care Needs (September 1, 2010)

Video Recording and  Slides 

This webinar offers a training tool for providing health care to CYSHCN, understanding a health care plan, and working with providers.

Handouts:

Health Care Connections Manual (English, Spanish & Chinese)

Addendum/Updates (March 2010)  •  Update to Manual: P51-55  •  Update to Manual: P56-62

Know Your Health Care Plan

 Denti-cal Information

The Medicaid Waiver Program: A Primer (August 4, 2010)

Video Recording and Slides 

Why would Regional Center staff ask you to enroll in the Medicaid Waiver program? Randy Laya and Suzanne Butler from Regional Center Of Orange County provide the ins and outs of this important program. This webinar covers eligibility criteria, purpose of the program, and institutional deeming for Medi-Cal. 

What Will Health Reform Mean For Children And Youth With Special Health Care Needs? (July 7, 2010)

Video Recording and Slides

This presentation by Edwin Park from the Center For Budget And Policy Priorities examines key coverage provisions included in the recent federal health reform law that would likely benefit children and youth with special health care needs in California. 

Update: Budget And Bills Affecting Children And Youth with Special Health Care Needs (June 2, 2010)

Video Recording and Slides 

Jessica Rothhaar from Health Access California covers the proposed premium increases for Medi-Cal and California Children’s Services, pre-existing condition exclusions and insurance, and upcoming opportunities and strategies to impact the budget.

First 5 And Developmental Services: Building Partnerships For Our Youngest Children (May 5, 2010)

Video Recording and Slides

Sherry Novick from First Five Association Of California discusses recent budget cuts within early start programs and the Department Of Developmental Services. She talks about how to avoid pitting children’s programs against each other, and how Regional Centers and First Five Commissions can all collaborate.

Getting Basic Health Services And Medically-Necessary Treatment From Your Health Plan (April 7, 2010)

Video Recording and Slides 

Lyn Gage and Susan Burger from the Department Of Managed Care discuss how to access help when you have questions about your health plan, and what to do if your requested treatment or service has been denied, delayed, or modified.

The Lanterman Act: Changes In The Law (February 3, 2010)

Video Recording and Slides 

How do the recent cuts to Regional Centers, In-Home Supportive Services, Supplemental Security Income, and Medi-Cal impact services for children and youth with special health care needs? What new information is available? Watch this presentation by Katy Lusson, client’s rights advocate at Disability Rights California.

H1N1: Preparing For The Flu Season (January 6, 2010)

Video Recording and Slides 

Are you overwhelmed or confused by H1N1 information? Would you like to understand how the spread of the flu may impact your family, workplace, and your community? Elisabeth Whitney, program coordinator at SF Card, discusses the impact of H1N1 and what you can do about it. 

2009

Addressing The Multiple Issues In Collecting Race, Ethnicity And Language Data: Rationale, And Promising Practices (December 2, 2009)

Video Recording and Slides 

Vivian Jackson of the National Center For Cultural Competence discusses the rationale and promising practices behind data collection. 

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

Video Recording and Slides 

Tony Anderson, executive director of the ARC Of California, discusses new research in the field.

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

Video Recording and Slides 

Hope Willis, program director of Dietetic Internship at the University Center For Excellence in Developmental Disabilities, talks about pediatric nutrition. 

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

Video Recording and Slides

William Stack, associate director of the Epilepsy Foundation of Northern California, gives a run down of pediatric seizures and prevention. 

Medicaid Waivers Training (July 1st, 2009)

Video Recording and Slides

Kathryn Smith, assistant professor Of clinical pediatrics in the Keck School Of Medicine at the University Of Southern California and the associate director for administration at the University Center For Excellence in Developmental Disabilities discusses various Medicaid waivers. 

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