FVLC2021 Banner. A virtual event, 12-5:30pm ET, June 8, 10, and 15. Platinum sponsor: United Healthcare

Join the conversation on social media #FVLC2021

Come join us to share promising practices and celebrate the extraordinary achievements of families and professionals partnering to improve health care for all children, including CYSHCN.  Explore sessions on health equity, supporting families during the pandemic, telehealth, family and youth engagement, organizational development, communication strategies, and impacting policy.

Who should attend: Family and youth leaders, Title V staff, pediatric providers, researchers, and other CYSHCN stakeholders from across the states, territories, and tribal communities.

When:

  • Tuesday, June 8 | 12-5:15pm ET
  • Thursday, June 10 | 12-5:15pm ET
  • Tuesday, June 15 | 12-5:30pm ET

Where: Virtual! Access the conference from your computer, laptop, tablet, or mobile device including general sessions, breakouts, networking, and more.

a photo of two women smiling from the 2019 Family Voices Leadership Conference

Come join us to share promising practices and celebrate the extraordinary achievements of families and professionals partnering to improve health care for all children, including CYSHCN.  Explore sessions on health equity, supporting families during the pandemic, telehealth, family and youth engagement, organizational development, communication strategies, and impacting policy.

Who should attend: Family and youth leaders, Title V staff, pediatric providers, researchers, and other CYSHCN stakeholders from across the states, territories, and tribal communities.

When:

  • Tuesday, June 8 | 12-5:15pm ET
  • Thursday, June 10 | 12-5:15pm ET
  • Tuesday, June 15 | 12-5:30pm ET

Where: Virtual! Access the conference from your computer, laptop, tablet, or mobile device including general sessions, breakouts, networking, and more.

Thank you to our sponsors

Sponsorship Opportunities

Platinum Sponsor

Policy Panel Sponsor

Equity Panel Sponsor

SPAN Parent Advocacy Network Logo

Awards Sponsor

Breakout Session Sponsor

Keynote

Michael D. Warren, MD, MPH, FAAP

Associate Administrator
Maternal and Child Health
Health Resources and Services Administration
U.S. Department of Health and Human Services
Read Dr. Michael Warren's Bio

Dr. Michael Warren is the Associate Administrator of the Maternal and Child Health Bureau (MCHB), part of the U.S. Department of Health and Human Services' Health Resources and Services Administration (HRSA). MCHB’s mission is to improve the health and well-being of America's mothers, children and families. Its Title V Maternal and Child Health Services program serves 92 percent of all pregnant women, 98 percent of infants, and 59 percent of all children, including those with special health care needs.

Before assuming his current role as MCHB’s Associate Administrator, Dr. Warren served in various roles at the Tennessee Department of Health, including Deputy Commissioner for Population Health, Assistant Commissioner for Family Health and Wellness, and Director of Maternal and Child Health. Prior to joining the Department of Health, he served as an Assistant Professor in the Department of Pediatrics at Vanderbilt and as Medical Director in the Governor's Office of Children’s Care Coordination.

Dr. Warren graduated Summa Cum Laude with Honors in Psychology from Wake Forest University and earned his medical degree from the Brody School of Medicine at East Carolina University, where he was inducted into the Alpha Omega Alpha Honor Medical Society. He completed his pediatrics residency, Chief Residency, and fellowship in Academic General Pediatrics at Vanderbilt, where he also obtained a Master’s in Public Health. He is a board-certified pediatrician and a fellow of the American Academy of Pediatrics.

Dr. Warren has served as President for the Association of Maternal and Child Health Programs (AMCHP), the national professional organization for maternal and child health professionals. He was also appointed by the United States Department of Health and Human Services to the Secretary's Advisory Committee on Infant Mortality (SACIM).

Schedule

A graphic version of session titles and times. All information is listed below in the "breakout sessions" section of the page.

Policy Panel

Coming soon.

Health Equity Panel

Please join us for the closing plenary of this year’s Family Voices Leadership Conference! Featuring respected Navajo Nation Council members, elders, and activists who will provide specific examples from Navajo Nation to demonstrate the importance of prioritizing culturally competent models and engaging vulnerable communities on issues of health equity.

Breakout Sessions

Mobilizing Partners During COVID-19: Florida’s Actions to Provide Equitable Healthcare for People with Disabilities and Complex Medical Conditions

June 8, 1:35 - 2:35pm ET

Track: Achieving Health Equity

The COVID-19 pandemic created a national healthcare crisis, especially for the disability and complex care community. State policies to distribute limited medical resources and other health-related inequities led to discrimination against people with disabilities. In many states, disability advocates and family leaders fought to have their voices heard. In contrast, Florida rallied these same groups to develop crisis standards of care, provider training, responses regarding back-to-school concerns, and collaborative mobilization to support Floridians with disabilities.

Presenters:

Shelly Baer, LCSW is director of Leadership Training Initiatives at the Mailman Center for Child Development. Jeffrey Brosco, MD is a clinician-educator who contributes to science by translating evidence-based clinical and organizational practice into ethically optimized public policy. Joe LaBelle is a self-advocate with learning disabilities and ADHD.  Joe is the Director of Programs Impact at Family Network on Disabilities. Bryan Russell is the Program Manager for the Florida Department of Health’s Disability and Health Program where he focuses on adapting and implementing public health interventions for persons with disabilities. Linda Hampton Starnes has spent her life actively involved in the disability community — as a special educator, parent, speaker, and advocate. Linda returned to the workforce as the Statewide Family Leader with Florida’s Department of Health CMS-Title V CYSHCN Office. Currently, she participates in AMCHP’s 2020-21 Leadership Lab, and in the HRSA-funded National Care Coordination Academy.

The Clallam Resilience Project in Washington State

June 10, 1:35-2:35pm ET

Track: Achieving Health Equity

The Clallam Resilience Project in Washington State promotes health equity for youth in underserved, diverse communities. Workshop objectives include introducing the Community Café model, sharing the development of the Resilience Project, and providing tools and products relevant for F2F work. This workshop will be an engaging panel discussion with family leaders and community partners plus each attendee will receive a deck of ACES Resilience cards for use with their family and in their community.

Presenters:

Jill McCormick has been the Program Director with the Washington State F2FHIC at PAVE for the past seven years. Shawnda Hicks. Minnie Whalen. Anne Penn-Charles.

All Hands on Deck: Benefits of an Interprofessional Medical Education Program during COVID-19 Using the ECHO Model

June 15, 12:00 - 1:00pm ET

Track: Achieving Health Equity

Social factors are inextricably tied to health inequities. To address such inequities, collaboration across the full spectrum of the health care, social, and community-based service sectors is necessary. In this session, you will learn from replicable adaptations to the traditional clinical-focused ECHO model to meet the needs of inter-disciplinary participants, including families, to deliver evidence-based models and promising practices that address systems level issues and social determinants of health.

Presenters:

Meg Comeau, MHA is a senior project director at the Center for Innovation in Social Work & Health (CISWH). Cara Coleman is a Program Manager with Family Voices National. Christina Boothby is the Director, Children and Youth with Special Health Care Needs (CYSHCN) Initiatives at the American Academy of Pediatrics (AAP) and the Principal Investigator of the National Resource Center for Patient/Family-Centered Medical Home and the National Coordinating Center for Epilepsy. Amy Shah is the Program Manager for Project ECHO. Bethlyn Vergo Houlihan, MSW, MPH, acts as project director for the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CoIIN to Advance Care for CMC) project. Ben Plant is a Research Assistant for the Children with Medical Complexity Collaborative Innovation and Improvement Network (CMC CoIIN).

“Sharing our Journey”: Video Module Series Interactive Training on Engaging Black and Hispanic Communities to Reduce Service Disparity Access

June 8, 2:55 - 3:55pm ET

Track: Achieving Health Equity

In efforts to increase awareness and access to early intervention for children with disabilities in underserved communities the UCDavis CEDD has formulated a series of video modules using input from community stakeholders. The series provides culturally relevant and culturally sensitive information to engage African American and Hispanic families around disability. In this interactive session, participants across disciplines will engage with the modules to produce action plans to empower underrepresented communities.

Presenters:

Elizabeth Morgan is a graduate student in Human Development at UC Davis doing qualitative autism research and is also the parent of an autistic child. Maribel Hernandez works at the MIND Institute/CEDD in the very important role of providing resources to families and ensuring that resources are culturally and linguistically appropriate.

Quality Improvement in Care Provision for Children with Medical Complexity: What does Transformative Family Partnership Look Like within Interprofessional Teams?

June 10, 2:55 - 3:55pm ET

Track: Achieving Health Equity

The lynchpin of health equity is partnership with people with lived experience, yet this can remain an elusive goal. The Collaborative Improvement and Innovation Network on Children with Medical Complexity has created transformational family partnership within ten interprofessional teams through multi-pronged strategies grounded in equity and accountability, and objective assessment and consensus-based action plans. Family leaders and project directors from Texas and Massachusetts will share experiences in forging family partnership and the impact on outcomes.

Presenters:

Maureen Benschoter, MD is a retired internist and also the mother of a medically complex teen who requires 24 hour nursing care. Rahel Berhane, MD was born in Ethiopia, and came to the USA in 1986 for pediatric residency education. She moved to Austin, TX in 1996. She and her husband have three children. Their middle son has Down syndrome and autism. Sarah K. Perkins is the Family Liaison CMC CoIIN Team Massachusetts Sarah has spent her life navigating the healthcare system as a patient. Judith Palfrey, MD, Principal Investigator CMC CoIIN Team Massachusetts Judith Palfrey is a pediatrician.

Virtual Engagement Tools: How to Reach & Connect Families and Youth During a Pandemic

June 10, 1:35 - 2:35pm ET

Track: Communication Strategies

Much of the work we do these days happens in virtual spaces. Youth and adults of all ages are learning to live, work, and raise children in a virtual world. Learn how P2PNYS is using Text4Caregivers (T4C), a free texting service for caregivers of CYSHCN, to support parents with "caring for the caregiver” messages for moms and dads, in English and Spanish. A youth presenter will share tools for engaging and connecting with youth and young adults who may be struggling to learn and work in remote settings.

Presenters:

Lin Perry is the Family to Family Project Director for Parent to Parent of NYS working out of the South Central Regional Office in Binghamton, NY. Johan Mora Valverde, started in May 2020 as the Youth Coordinator at SPAN Parent Advocacy Network (SPAN).

Valarie Colavecchio.

Family Authorship: Opportunities to Advocate through Publishing

June 8, 1:35 - 2:35pm ET

Track: Communication Strategies

This session will address the modern landscape of publishing and how family leaders can share their voices through written media. We will identify entry-level and step-up opportunities that will help emerging writers build their confidence and their audience. The presenters will share personal experiences with writing for publication and a mentoring example of how to support a family leader through this process.

Presenters:

Lauren Agoratus is the parent of a child with multiple disabilities. Dana Yarbrough is the assistant director of strategic initiatives for the Partnership for People with Disabilities, Virginia's university center for excellence in developmental disabilities located at Virginia Commonwealth University. Clarissa Hoover is the family caregiver of a youth with a health disability and Project Director for the national Family Voices organization.

Empowering Youth Using a Person-Centered Tool to Improve Lives Every.Single.Day

June 8, 1:35 - 2:35pm ET

Track: Engaging Youth Voices

What’s most important and really matters to youth? This session, featuring Texas’ first People Planning Together Peer to Peer Trainer and parent professionals, will show you how Texas is engaging and empowering youth by using the person-centered “One Page Profile.” Whether at school, in a new adult health care setting, hospitalized during the pandemic, or advocating in everyday life, the One Page Profile elevates the youth voice and supports better outcomes.

Presenters:

Shelbi Davenport is a young adult who was given the gift of being told “NO!” Aimee Ortiz-Day joined the Center on Disability and Development at Texas A&M University in 2014. Ivy Goldstein is the State Children with Special Health Care Needs (CSHCN) Health Coordinator with the Maternal and Child Health Title V program at the Texas Department of State Health Services.

Crushing Ableism

June 10, 1:35 - 2:35pm ET

Track: Engaging Youth Voices

Discrimination in favor of non-disabled people is nothing new. For centuries, the world has looked down upon people with disabilities and elevated the importance of those without. In ableist societies, disabled people are considered less valuable, or they are even seen as expendable.     YSHCN representatives from Family Voices’ YASA (Youth as Self-Advocates) project share their thoughts about this age-old challenge and offer ways to crush archaic assumptions in this panel discussion.

Presenters:

Emily Ball lives in Wallingford, Connecticut and graduated from Manchester Community College with a Disability Specialist A.S. degree 3 years ago. Luke Byram is a young adult with Cerebral Palsy who is an advocate for himself and others. Lis Harkins recently received her Associates of Arts degree from Aiken Technical College and an Associates in Criminal Justice.

Are we listening? YEP!  Young Exceptional Perspectives

June 15, 12:00 - 1:00pm ET

Track: Engaging Youth Voices

Exceptional Children’s Assistance Center recognizes the power and value of the voice and ideas of young people. As a result, ECAC launched a Youth Advisory Team (YAT) to help design projects, programs, and resources created by youth with disabilities, for youth with disabilities. Join ECAC staff and YAT members to learn how we work in partnership to coordinate opportunities and trainings that support the interests and personal development of our Youth Advisory Team members

Presenters:

Aimee Combs is the PTI Assistant Manager at Exceptional Children’s Assistance Center in North Carolina and parent to a 23-year old son with autism. William "Billy" Pickens III is an original member of ECAC's Youth Leadership Team. Nicholas Batley is from Mooresville, NC and is 22 years old. He is an Honors graduate of Mooresville High School, class of 2018, and currently attends the Ignite Program in Davidson, a transitional and social skills program for young adults on the Autism Spectrum. Latisha Briggs who goes by her middle name "Abbey" is 16 years old. She is a high student at Weldon STEM High School Career Academies and is an active member of ECAC's Youth Advisory Team

Family Engagement at the Newborn Screening (NBS), Genetics Counseling and Advisory Group Level

June 8, 2:55 - 3:55pm ET

Track: Families & Telehealth

This workshop will provide tips and tools that family leaders can implement to develop a partnership with your states New Born Screening Program; how family leaders can offer support to families during or after a tele health counter and how family leaders can develop and facilitate an advisory group.

Presenters:

Nanfi N. Lubogo of Cromwell, CT serves as Co-Executive Director for PATH Parent to Parent/Family Voices of CT (PATH/FVCT), a statewide parent support network for families of children and youth with special health care needs/disabilities. Carmina Cirioli is Co-Executive Director (2004-present). She is a wife and mother of 3 boys. Her son Carlo is diagnosed with Autism Spectrum Disorder. Debra Ellis, RN, BSN and Project Coordinator for CT Newborn Diagnosis and Treatment Network.

Inflection Points: Finding or Giving Support When Complex Decisions Arise

June 8, 4:15 - 5:15pm ET

Track: Families & Telehealth

Families caring for children with significant medical or developmental needs routinely face complex choices. Research indicates that a parent’s definition of themselves as a “good parent” largely depends on feeling confident in their decisions and that decisional regret can be minimized when families feel supported in their decisions. Through family and provider video interviews, blogs, podcasts, guides and curated learning modules, Courageous Parents Network provides resources to help families better consider the complex choices before them.

Presenters:

Blyth Lord works with families caring for children with life-limiting illness, and with their providers to represent the family’s lived experience. She serves on the board of NTSAD and is co-chair of the American Academy of Pediatrics’ Parent Working Group.  Janet Duncan is a nurse practitioner who worked first with pediatric oncology families and then helped found the pediatric palliative care consult service in Boston working with children with serious/chronic diseases and their families.

Family Voices CARES Act Double Your Money Mini-Grantees

June 10, 4:15 - 5:15pm ET

Track: Families & Telehealth

As part of its 2020 CARES Act Award, Family Voices provided mini-grants to the F2Fs. Hear from 4 of the "double your money" grantees, and the difference the extra $7500 made in supporting families access to telehealth.

Presenters:

Jenn Banna, Yvonne Peterson, Lori Heginbotham, Holly Wheeler

The Florida Family Leader Network: Building capacity of family/youth leaders and Partnerships to improve care for CYSHCN

June 15, 1:20 - 2:20pm ET

Track: Family Engagement at all Levels

Learn about two exciting initiatives that build capacity for family/professional partnerships. The Pediatric Pulmonary Center (PPC) Family Leaders developed a Family/Youth Leader trainee curriculum that can be adapted and taught at all sites that serve CYSHCN. In Florida, the FL Family Leader Network (FFLN), a collaboration between the Florida Title V Children’s Medical Services Office of Children and Youth with Special Healthcare Needs (CYSHCN) and the Maternal and Child Health Bureau (MCHB) funded programs, has created a replicable networking, collaboration, and leadership skills-building model that strengthens family-professional partnerships.

Presenters:

Angela Miney, the parent of a young adult with a chronic health condition, is the Family Partner at the University of Florida Pediatric Pulmonary Center, (UFPPC), a federally funded Maternal and Child Health Bureau (MCHB) program. Linda Hampton Starnes has spent her life actively involved in the disability community — as a special educator, parent, speaker, and advocate. Linda returned to the workforce as the Statewide Family Leader with Florida’s Department of Health CMS-Title V CYSHCN Office. Currently, she participates in AMCHP’s 2020-21 Leadership Lab, and in the HRSA-funded National Care Coordination Academy. Linda Russo received her BA from Auburn University and was a Respiratory Trainee in the University of Alabama at Birmingham (UAB) Pediatric Pulmonary Center (PPC) Maternal and Child Health Program while completing a master’s in health education from UAB. Amanda Sharpe, the spouse of an adult with a chronic respiratory condition, has been the Family Partner at the University of Arizona Pediatric Pulmonary Center (UAPPC) since 2010.

Stories and Relationships from Navajo Family Voices Kinship Homebased Childcare Stipend Project on the Navajo Nation

June 8, 1:35 - 2:35pm ET

Track: Family Engagement at all Levels

With the absence of professional childcare services on the Navajo Nation in New Mexico, families have been self-reliant during prolonged COVID lockdowns and curfews since March 13, 2020. Childcare, wellness, activities and learning so critical for early childhood development must be looked after from within. Josey and Elvira will discuss stories learned and relationships gained from Navajo Family Voices kinship homebased childcare stipend project conducted in Dec 2020/Jan 2021 on the Navajo Nation.

Presenters:

Josey Foo is Executive Director and Co-Founder of Indian Country Grassroots Support, the parent organization for Navajo Family Voices. Elvira Dennison is a Family Mentor with Navajo Family Voices. She is Salt Water clan, born for Many Hogans, and am the parent of two children with extra healthcare needs.

Family Engagement Is Just the Beginning: Sharing Power to Change Systems

June 10, 1:35 - 2:35pm ET

Track: Family Engagement at all Levels

Parents and caregivers with lived experience in children's mental health will share their stories and recommendations on family engagement and sharing power at all levels of programs, organizations, and systems. Stories will address systems change, the impact of the pandemic, and ultimately how to meaningfully share power with people with lived experience. This session will be facilitated and supported by the Wisconsin Office of Children's Mental Health.

Presenters:

Andrea Turtenwald has served Wisconsin youth, parents and families for over nine years. TBD: Co-presenters will be parents and caregivers with a personal connection to children's mental health, child welfare, special healthcare needs, developmental disabilities, and many other experiences.

The Value of Empowering Families as Partners at All Levels

June 8, 2:55 - 3:55pm ET

Track: Family Engagement at all Levels

Join the diverse staff of SPAN Parent Advocacy Network of NJ to hear from them about the importance and examples of, and strategies for, authentic family engagement at all levels across systems and the MCH domains. Leave with concrete strategies and ideas for implementing and improving the focus on family leadership, engagement, and ongoing support within your work.

Deepa Srinivasavaradan is the CDC’s "Learn the Signs. Act Early." Ambassador and the Division for Early Childhood Recommended Practices (aRPy) Ambassador for NJ. Jeannette Mejias promotes family leadership development and partnership, especially for immigrant and bilingual families, at all levels across all systems, improving access to vital services and resources for underserved families statewide. Nicole Pratt is a TA Facilitator on the FV LFPP project, the SPAN Senior Parent-Professional Development Facilitator, and Director of the Empowering Women in Community Leadership for Healthier Families project at SPAN. Kasey Dudley mentors and encourages parents to become strong leaders for their children and families and within their communities.

The National Genetics Education & Family Support Center: Family Engagement on the Genetics Journey

June 15, 12:00 - 1:00pm ET

Track: Family Engagement at all Levels

Staff from the National Genetics Education and Family Support Center will provide an overview of the Center's work, and the roles of the National Coordinating Center and 7 Regional Genetics Networks (RGNs) as part of the Genetics Health Care Delivery System. Mountain States RGN will describe its innovative Genetic Navigators Program and Time 4 Genetics primary care education initiative - two innovative models of family engagement that keep families in the driver's seat of their genetics journey.

Presenters:

Kristi Wees is the Projects Manager for Mountain States Regional Genetics Network (MSRGN) and came to this role as a parent advocate who served as part of the 2012 Consumer Task Force for Baby’s First Test. Molly Martzke brings passion and real-life experience to her role with the National Genetics Education and Family Support Center where she serves as the Senior Program Manager.

State Title V Agency and Family Led Organization Partnerships Increases and Strengthens Intentional Youth and Family Engagement

June 8, 4:15 - 5:15pm ET

Track: Family Engagement at all Levels

As community and state agencies, we get deeply involved in developing policies and guidelines; however, we often forget to speak to the population that these policies affect. What about input from youth and families? Agency and family partnership is vital in making decisions that address unique strengths and needs, especially in a time of crises. This workshop will demonstrate collaborative efforts to successfully engage youth and families in your state programs’ decision-making process.

Presenters:

Kendra Mitchell is the Program Director of Integrated Systems of Services at the Tennessee Department of Health. Jacqueline is the State Title V CYSHCN Section Chief at the Tennessee Department of Health. Kara Adams, Director of Family Voices of Tennessee  Kara came to the Coalition as the director of the Parent to Parent program. Currently, she leads the Family Voices of Tennessee team, overseeing all Family Voices programs and projects. Jama Mohamed is the Youth Program Coordinator for Family Voices of Tennessee.

Involving Youth, Families, and Patients as Research Partners: A Comprehensive Guide to Successful Partnerships

June 10, 2:55 - 3:55pm ET

Track: Family Engagement at all Levels

Youth, Families, and Patients (YFP) should be involved at every level of research as full partners, not just participants; however, often, neither YFP nor researchers have sufficient guidance to equitably and meaningfully work together. This workshop will discuss findings from a comprehensive search of toolkits and frameworks for involving YFP as research partners and explain how a new guide to involvement, funded by the Lucile Packard Foundation for Children's Health, will help both YFP and researchers create relationships that increase the relevance of research to the populations it is meant to help.

Presenters:

Charlene Shelton is program manager for CYSHCNet National Research Network. Clarissa Hoover started advocating for patients, families, and quality healthcare shortly after her daughter's diagnosis with cystic fibrosis in 2005. My name is Toni Hunt Hines. I was born and raised in the South and have a rich sense of family and community. Kalissa Walker is a Colorado native. Growing up on the eastern plains of Colorado Kalissa learned early the importance of helping her neighbors.

The Act Early Response to COVID-19: Families Role in Promoting Early Identification, Fostering Family Resilience, and Improving Outcomes for Families with Young Children

June 10, 4:15 - 5:15pm ET

Track: Family Engagement at all Levels

This workshop is an opportunity to learn about the Act Early Response to support the early identification of young children with developmental disabilities, including autism, and about fostering family resilience during the COVID-19 pandemic. The project includes 43 states and territories. Family leaders in NJ and SD will share how they collaborated on the Act Early/COVID-19 Response Project in their states and additional ways to partner and utilize/adapt the Learn The Signs Act Early resources to support the families.

Presenters:

Danielle Webber, MSW, is a Public Health Program Manager at the Association of University Centers on Disabilities (AUCD). Elizabeth (Betsey) Howe is the AUCD Fellow for the Act Early Response to COVID-19 Project. Lisa Sanderson has served as Project Director for the statewide Family to Family Health Information Center at South Dakota Parent Connection since 2008, also home to the state’s Parent Training Information Center. Deepa Srinivasavaradan is the CDC’s "Learn the Signs. Act Early." Ambassador and the Division for Early Childhood Recommended Practices Ambassador for NJ.

Latino Community of Practice: Family and Community-Based Leaders in Participatory Action

June 15, 2:40 - 3:40pm ET

Track: Family Engagement at all Levels

We will discuss how the LCPR was created to meet the compounded and pressing needs of ever-growing Hispanic/Latinx families with children and youth with disabilities in the state in Georgia. We will discuss past, current, and future services, opportunities, and supports that we co-lead with Hispanic/Latinx family and community-based leaders. This will be inclusive of a portfolio of activities and events that we co-lead for a growing number of Spanish-speaking families.

Presenters:

Brenda Liz (Bren) Muñoz is a former State of Georgia Governor Appointed Council and Executive Committee Member with the Georgia Council on Developmental Disabilities (GCDD), as well as a former Diversity Fellow, and Family Fellow/Trainee with Georgia’s Leadership Education in Neurodevelopmental and related Disabilities (GaLEND) with the Center for Leadership in Disability (CLD), the School of Public Health, at Georgia State University. Mariana Ortiz-Pordilla works as Project Support at the Center for Leadership in Disability, at the School of Public Health, at Georgia State University. Yazi Demera is an undergraduate student at Georgia State University who is pursuing a Bachelor of Science in Education in Elementary Education with a concentration in ESOL.

Your Voice Counts: Preparing Families to Connect Virtually with Decision Makers

June 15, 1:20 - 2:20pm ET

Track: Impacting Policy

Family Voices of WI developed tools to assist families with their visits with state legislators during our Advocacy for Change (AFC) event, a virtual advocacy day. We will share tools and strategies families can use to communicate virtually with decision-makers to impact policy change.

Presenters:

Barbara Katz, Co-Director of Family Voices of WI since 2005, is the parent of three adult sons and has been advocating for her middle son, Ben, since his birth 29 years ago. Lynn Renner, Communications and Information Coordinator since 2009, is the parent of two children. Her transition-aged son has cerebral palsy and epilepsy.

Supported Decision Making in Nevada

June 10, 2:55 - 3:55pm ET

Track: Impacting Policy

The Supported Decision Making in Nevada presentation will showcase the development of supported decision making in Nevada from the passage of its new law, NRS 162C, in 2019 followed by the establishment of the Self-Determination Law Project to the creation of the Supported Decision Making in Nevada multi-media project. The project was developed to educate parents, professionals, and individuals with disabilities about alternatives to guardianship that promote self-advocacy and values personal choice.

Presenters:

Marcia O’Malley is a video specialist and disability advocate. Marcia is also the former Executive Director of Family TIES of Nevada, a State Affiliate of Family Voices, and a Family-to-Family Health Information Center. Diana Rovetti is an energetic mother of five, active in advocacy, volunteering and a leader in educating the community on disabilities issues. Ian Zehner is a strong disabilities advocate. Judge Frances Doherty is the longest serving Family Division judge. Judge Doherty has spoken and trained across Nevada and nationally on issues affecting children, families and vulnerable adults.

Supporting Caregivers During the COVID-19 Pandemic: Results of a Global Survey of Respite Agencies

June 15, 1:20 - 2:20pm ET

Track: Lessons Learned from Pandemic

A total of 239 individuals from 15 different countries responded to a survey designed to understand the global impact of the COVID-19 pandemic on respite care services and identify best practices for supporting caregivers during this time. We will share key lessons learned about the impact of the pandemic on respite and caregiver services, including key challenges, how programs have adapted, new and innovative services that have been created, and helpful resources.

Presenters:

Kim Whitmore, PhD, RN, CPN has more than 15 years of progressive leadership experience working with communities as a home-care nurse manager, private duty nurse, local Health Officer, Policy Section Chief and State Health Plan Officer for the Wisconsin Division of Public Health, educator and research scientist.  Susan Janko Summers, PhD is an educational ethnographer who has studied and written about child maltreatment, infant and early childhood mental health, childhood disabilities, and children and families at risk in the contexts of culture and community. Ms. Jill Kagan is Director of the ARCH National Respite Network and Resource Center.

Small Gift, Big Impact: The Benefit of Developing Community Partnerships to Support Families in Crisis

June 8, 2:55 - 3:55pm ET

Track: Lessons Learned from Pandemic

Understanding social determinants of health provides a framework for recognizing the day-to-day stressors that families who have a child with a chronic health condition experience.   Factor in a nationwide pandemic with increasingly stressed social systems and these struggles are further magnified.  This session will highlight a collaboration between two community organizations and a hospital specialty program to meet the immediate needs of families of children with medical complexity during a time of crisis.

Presenters:

Sha Clark is a licensed clinical social worker employed at the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital in Columbus, Ohio. Mindy Atwood is the CEO and Founder of the nonprofit organization, Patches of Light. Founded in 2000, Patches of Light assists families with children facing catastrophic illness/injury and is based on the personal experiences Mindy faced with her own children’s illnesses; cancer and CHD. Nick Farmer is a graduate of the University of Maryland, holding Bachelor’s and Master’s degrees in Electrical Engineering. Dr. Laurie Glader is a pediatrician who specializes in the care of children with medical complexity.

Programming During a Pandemic: How to Meet the Needs of Families in 2021 and Beyond

June 10, 2:55 - 3:55pm ET

Track: Lessons Learned from Pandemic

Prioritizing training for emergency situations helps families to be more prepared and avoids having to deal with a “crisis-within-a-crisis” when a challenge occurs.  Hear what Ohio is doing and let us share some resources we have gathered to help families be prepared.

Presenters:

Lynne Fogel is a parent of a child with special healthcare needs and works as a Family Support Specialist for Ohio Family to Family Health Information Center.  Kim Mathews has decades of experience serving families of CYSHCN. She is a parent of a CSHCN.

Parent to Parent Support During the Pandemic

June 15, 2:40 - 3:40pm ET

Track: Lessons Learned from Pandemic

COVID-19 has made life extra challenging for families raising children and youth with special health care needs/disabilities (CYSHCN). Learn how Parent to Parent USA organization and the Michigan Family Center for CYSHCN developed new strategies to address the evolving support needs of families during the pandemic.

Presenters:

Ayanna Eggleston is a Parent Consultant for the Family Center for Children and Youth with Special Health Care Needs (Family Center). Lily Brown has experienced firsthand the magic in the match of parent to parent support after her daughter was diagnosed with a rare genetic condition at age 3. Marsha Quinn brings over 20 years of experience in nonprofit marketing and Early Intervention/Part C to Parent to Parent USA’s member organizations.

Building Personal Support Networks for Individuals with Disabilities

June 15, 2:40 - 3:40pm ET

Track: Organizational Development

The best guarantee of a safe and secure future for people with a disability is to have caring relationships in their lives and personal support networks. This workshop is an opportunity to learn about the Texas Network Connections and the Star Raft program, two tested methods for creating circles of support that build connections, companionship, community, continuity, and that reduce isolation, and assist with decision-making for individuals with disabilities.

Presenters:

Denise Sonleitner is the Co-Creator and Lead Facilitator of Texas Network Connections, Texas Parent to Parent’s network facilitation program, which launched in Austin and is expanding to other areas of the state.  Cynda Green has worked with Texas Parent to Parent for 10 years. She currently serves as the Pathways to Adulthood Transition Program Coordinator and as part of the Management Team for TxP2P. David Wetherow and his wife Faye invented the Microboard model, which has been replicated in over 1,500 installations in the US, Canada, Australia and elsewhere.

Serving Families More Effectively Through Collaboration

June 10, 4:15 - 5:15pm ET

Track: Organizational Development

The Covid-19 pandemic required organizations to pivot their work from in-person to virtual overnight, requiring new skills. The healthcare projects at the Federation for Children with Special Needs, work together, but quickly realized this public health emergency required increased and skill- based collaboration to effectively assist and support families and professional partners. Members of the FCSN projects will present their collaborative model to serve families and professionals with comprehensive, relevant, and accurate information.

Presenters:

Pat Cameron, B.S., is the Director of Family TIES (Together in Enhancing Support) at FCSN, a project funded by the MA Department of Public Health. Aceriane Leal is the Portuguese Outreach Specialist for the Federation for Children with Special Needs. Pam Nourse is the Executive Director of the Federation for Children with Special Needs (FCSN) in Massachusetts. Pat Nemia, M.A., P.T. is the Director of Mass Family Voices and the Massachusetts Family to Family Health Information Center projects at the Federation for Children with Special Needs.

The National Family Peer Specialist Certification Affirms The Peer Workforce

June 8, 4:15 - 5:15pm ET

Track: Organizational Development

National certification ensures the ethical and professional practice of family peer support services and the proficiency and competency of family peer support providers. We will review the process and needed competencies to achieve national certification and provide a hands-on approach to training, supervising, and supporting the emerging workforce. The participant will understand what is needed to achieve national certification, the competencies to obtain certification, and the benefits to the workforce and the families served.

Presenters:

Dr. Lynda Gargan serves as the Executive Director for the National Federation of Families (NFF) and Principal Investigator of NFSTAC. Lynda leads the country’s largest national advocacy organization focused solely on supporting the families of children and young adults who experience mental health and/or substance challenges. Dr. Gargan serves as a tireless champion for the mission and vision of the Federation. Under her guidance, the National Federation has fully operationalized the Family Peer Specialist Certification. Gail Cormier, Project Director of the National Family Support Technical Assistance Center (NFSTAC) brings over 25 years of experience providing national and statewide technical assistance and expertise working with families, youth, and young adults. Gail brings over 25 years of experience providing national and statewide technical assistance and expertise working with families, youth and young adults. She is a proven national family leader with both professional and family-lived experience.

New Family Toolkit on Pediatric-to-Adult Health Care Transition

June 8, 4:15 - 5:15pm ET

Track: Transition

Got Transition and its Family Health Care Transition Advisory Group have developed a new toolkit for families to use to guide the transition from pediatric to adult health care as the youth assumes more independence in taking care of their own health and using health services. This workshop will introduce the toolkit and provide an opportunity for attendees to hear directly from parents about their transition experience and use of the toolkit.

Presenters:

Annie Schmidt, MPH is a Health Research/Policy Analyst at The National Alliance to Advance Adolescent Health and Got Transition. Allysa Ware, MSW is a Program Manager with Family Voices.

Transitioning to an Adult Medical Home: What Every Parent Needs to Know

June 10, 4:15 - 5:15pm ET

Track: Transition

Transition to an adult medical home is an important process that seeks to meet the individual healthcare needs of children as they move from childhood to adulthood.  Presenters will discuss strategies for making transition successful and share examples of how they used the evidence-based materials from Got Transition to ensure successful transitions to adult systems of care. This is also an opportunity to learn about a transition training series that was developed and implemented for MCHB  employees and parents, based on a pilot program that utilized a family navigator with the SC Center for Individuals with Intellectual and Disability (CAD).

Presenters:

Sally Baker, BS, M.Ed. Sally began working for Family Connection of SC in June of 2018 as a Family Engagement Manager. Currently, Sally is the Director of Family Engagement at Family Connection of SC, continuing to help serve and support families in the community and around the state. Tracie Hayward, Family-to-Family Manager Family Connection of SC. Elizabeth Allen, LMSW, MSW, Family Engagement Manager, Family Connection of SC

Bonus Content

We received so many wonderful proposals on very relevant topics, and could not fit them all in the three days of workshop sessions.

Everyone who registers for the conference will receive access to additional pre-recorded sessions during the conference!

Achieving Health Equity

Lessons Learned from Diving into Interpretation for Family Training

Parent Navigators in a General Pediatrics Clinic to Facilitate Referrals to Early Intervention and Lenterman Act Services through the California Regional Center System

Communication Strategies

A "One Stop Shop" for Families: Building an Online Resource Repository for Families and Providers

Communication Strategies on Supporting our Families through the Pandemic through Communications

Hit It Out of the Park: Harnessing Our Patient Portal for Easy Family Communication 

Innovative and 'Tried and True' Ways to Reach Families

Engaging Youth Voices

Providing Teen Mentors for Young D/HH Children

Providing Teen Mentors for D/HH Children

Supported Decision-Making: Building a Path to an Independent Life

Families & Telehealth

At the digital table: How to partner with families and young adults when developing telehealth implementation resources for pediatric clinician

Family Engagement to Advance Community Centered Telehealth: Strategies from California

 Helping Families Access Telehealth

Let's Talk Telehealth! What Assistive Technology Can Help and How Can I Get It?

 Pandemic Lessons: Routes to Success Using Telehealth for Developmental Occupational, Physical, and Speech and Language Therapy

Specialized Telemedicine for People with IDD during COVID-19 and Beyond

Family Engagement

Family Engagement Model: Action Across Systems

Family Leadership Resources and Engaging with Your Community

Goals for Children: Helping Families and Children Create Goals

Kansas IEP Mentor Program: Supporting Families at all Levels

Leading with Lived Experience:  North Carolina’s Strategies in Engaging Families and Youth

One Page Profiles Open Doors to Community! Medical, Education, Recreation, and Employment

Person-Centered Approaches to Supporting Families

Impacting Policy

Empowering Home Care Advocates

Lessons Learned from the Pandemic

A Family Navigation Program in South Florida Supporting the Changes in the Needs of Families of Individuals with Disabilities during the COVID-19 Pandemic

A Rosie Place for Children: The 2020 COVID-19 Response and "reach Every Family" initiative

IMPACT WV Patient Navigators: Exploring Additional Challenges Introduced by COVID-19 and the Solutions found in the Process

Pandemic Survival: Power Tools Honed from Life with Autism

Pediatric Hospitalizations: Parents as Partners during the Pandemic

The Ohio Family Network: A Blended Triad of Paradigms to Support Families

Registration

Scholarships available! If interested, please complete the Scholarship Request Form. Contact Lisa Maynes, lmaynes@familyvoices.org with any questions.

Green = flat fee for organization/agency

Blue = per person fee

*Per organization/agency – pay once for any number of staff at your agency/organization.  Each staff person will need to register to gain access to the conference.  The first person will receive a discount code that can be used for subsequent registrations from your organization/agency.

**Family/Youth – includes family/youth leaders from other family organizations and families/youth that are not affiliated with an organization.

Scholarships

Family Voices has limited scholarships available for the 2021 Family Voices Leadership Conference for those who, without financial aid, would not be able to attend.

Family Voices is particularly interested in supporting the participation of a diverse group of family leaders who bring a wide range of life experiences. Our goal is to help build strong, diverse, and supportive communities in order to promote health equity and to improve health care services and policies for children. Thus, scholarship priority will be given to:

  • Family members/family leaders who represent a diverse or underserved population, and
  • New family leaders recommended by the Family Voices Affiliate Organization (FVAO) or the Family-to-Family Health Information Center (F2F).

Other CYSHCN stakeholders may apply.  

Scholarship requests are due by May 22, 2021.  You will be notified by May 28 whether your scholarship request can be fulfilled.

If interested in a scholarship, please complete the Scholarship Request Form. Contact Lisa Maynes, lmaynes@familyvoices.org with any questions.

We look forward to sharing and learning with you!

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