MCH Bridges: The Official AMCHP Podcast

October is Down Syndrome Awareness Month. In this episode of MCH Bridges, guest host and Lettercase Program Director Dr. Stephanie Meredith reviews some of the findings from her recent study focused on the experiences of parents receiving a prenatal diagnosis of Down syndrome. Dr. Meredith approaches her research as the mother of a 24-year-old son with Down syndrome. Additionally, listeners will gain insight from a recent project aimed at improving support for Black and Hispanic new and expectant parents of children with Down syndrome. Throughout the episode, Dr. Meredith uplifts the lived experiences of guest speakers Ayah Ibrahim and Tatiana Salinas, two mothers of children with Down syndrome, and emphasizes the importance and real-world impact of their diagnosis experiences. You will also hear from Katie Stoll, providing the perspective of a healthcare professional and leader of the Genetic Support Foundation on how to best support clinicians and families who receive care.  Tune in to witness an important conversation between our guest host and speakers as they delve into what advocates and healthcare professionals can do to reduce emotional harm and disability bias and, instead, empower parents with information and support during this critical time. Disclaimer: The views presented in this podcast are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. Resources:  Lettercase Lettercase PCORI Resources Genetic Support Foundation The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing by Meredith et al. Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race by Krell et al. Healthcare experiences of patients with Down syndrome from primarily Spanish-speaking households by Chung et al. Parent-reported genetic counselor adherence to the NSGC practice resource for communicating a potential prenatal diagnosis: Impact on the Down syndrome diagnosis experience by Ijaz et al. Massachusetts Down Syndrome Congress National Parents First Call Center Down Syndrome Diagnosis Network American Academy of Pediatrics (AAP) Down Syndrome Guidelines Practice guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome: recommendations of the national society of genetic counselors by Sheets et al. National Down Syndrome Congress Clinic List Jack’s Basket 

This episode dives into the world of care mapping, as a continued conversation from a skills-building session at the 2024 AMCHP Annual Conference. Care mapping serves as a powerful tool to help families and professionals coordinate and enhance support and care for children and youth with special health care needs. By visualizing the complex network of care, these maps improve communication and foster a shared understanding among all involved. This episode also explores innovative uses of care mapping, including how it can aid youth in articulating their mental health needs.  Tune in to join our guest speakers in discovering how care mapping can transform the way we approach and manage health care for children, families, and beyond!   Resources: Care Mapping: A How-To Guide for Patients and Families (Boston Children’s Hospital)  Integrated Care at Boston Children’s Hospital: Care Mapping  Care Maps (Parent Education & Advocacy Leadership Center)  Care Mapping: A How-To Guide for Professionals (Boston Children’s Hospital)  Maternal death and pregnancy-related death (March of Dimes)  Racial Disparities in Maternal and Infant Health: Current Status and Efforts to Address Them (KKF) Safer Childbirth Cities Maternal Health Learning & Innovation Center Merck for Mothers 

Our new MCH Bridges podcast episode addresses the critical importance of planning for and responding to the needs of women, children, and families, particularly those requiring complex care, during public health emergencies. The efforts described in this episode reflect the panelists' personal and professional experiences advocating for and implementing a state-level policy change to do just this. Tune in now to this detailed discussion about what it takes to implement a policy change aimed at ensuring that children with the most complex health care needs are less vulnerable to the impact of natural disasters and other emergencies. This example demonstrates how family advocates and staff from multiple state agencies partnered to create an amendment for the Medically Fragile Technology Dependent Medicaid Waiver that enabled critical power generators to be purchased with the use of waiver service funds.  This episode is a part of AMCHP’s Building Resilience from Lived Experience anthology.ResourcesBuilding Resilience from Lived Experience: AMCHP’s Collection of Public Health Emergency Preparedness and Response Stories  Home Generator Information for MFTD Waiver Families (University of Illinois Chicago's DSCC) Public Health Emergency Preparedness and Response Checklist for Maternal and Infant Health (AMCHP, Centers for Disease Control and Prevention)   Prepared4ALL: Whole Community Inclusive Emergency Planning (Association of University Centers on Disabilities) Find a Family-to-Family Health Information Center (F2F) or Family Voices Affiliate Organization (FVAO) Parent to Parent USA 

Our newest MCH Bridges and What the Health?! crossover episode, led by AMCHP’s Youth Voice Amplified (YVA) committee, talks about the food insecurity crisis in the United States from a systems and lived experience point of view, and how these perspectives impact each other. This episode shares an overview of the state of food insecurity in this country, a background of different terms in the food justice space, and the inequities that present challenges for many in our communities. You will also hear about the importance of empowering communities and understanding solutions to accessing nourishing foods they connect with to create positive health outcomes.  Tune in now to listen and learn from guest host Amber Woodside and speakers Serena Sakkal and Bennett K., who share their experiences and insights on how to restore the connection between food and joy. Disclaimer: This episode deals with topics of food insecurity, food banks, poverty, childhood trauma, nutrition, and systems of discrimination. Please prioritize your mental health and consider if you're ready to listen to this episode. If you or your family are experiencing acute food insecurity, you can dial 211 to be connected to a local confidential referral service in order to find assistance. If you or someone you know is struggling with an eating disorder or food-related trauma responses, you can contact the Alliance for Eating Disorders Awareness Helpline at 1-866-662-1235. Resources:  AMCHP’s Food Security Topic Page Pueblo Food Project  Eating Disorder Hotlines Healthcare Without Harm – Connecting Food-Insecure Individuals to Resources Feeding America – How We Measure Hunger USDA Facts & Statistics Food Empowerment Project

According to the Kaiser Family Foundation’s Medicaid Enrollment and Unwinding Tracker, as of February 1, over 16.4 million Medicaid and CHIP enrollees nationwide have been disenrolled and lost their coverage. Over 70% of people are losing coverage because of paperwork reasons, such as missing notices from the state Medicaid office and an inability to produce wage statements. Out of the states reporting age breakouts, children accounted for 38% of Medicaid disenrollments. Our latest MCH Bridges episode highlights the human experiences of what these alarming statistics mean for families across the country and emphasizes the role of leaders in maternal and child health (MCH) during this ongoing issue. Guest host Atyya Chaudhry dives into the stories of those with lived experience of losing Medicaid coverage and what organizations like the Florida Health Justice Project are doing to make an impact. Tune in to these important conversations with our guests Janis Fay and Alison Yager, who share their experiences and insight, as well as action steps that MCH advocates and individuals who are experiencing coverage loss can take.Resources: AMCHP Resource Library: Promoting MCH Coverage Children with Medical Handicaps (referenced in the episode) Lily’s Story & Christina’s Story (referenced in the episode) AMCHP Blog Post: The Medicaid Unwinding Process at the Halfway Mark: How Can MCH Advocates Address the Current Challenges to Ensure Continuity of Coverage for Children and Families?AMCHP Blog Post: MCH Advocates are Alarmed About the Rapid Loss of Child and Family Coverage in the Medicaid Redetermination Process Florida Health Justice Project - Medicaid | The Lived Experience: Unwinding the Continuous Coverage Requirement

November is National Youth Homelessness Awareness Month. Severe weather, extreme temperatures, and natural disasters present vastly increased challenges for homeless communities. Listen to our latest MCH Bridges and What the Health?! crossover episode, led by AMCHP’s Youth Voice Amplified (YVA) committee, to learn about how climate change is directly affecting people experiencing homelessness. You’ll hear from guest hosts Mitra Kashani, environmental public health scientist, and Lisa Brooks, expert in the homelessness system, as they share what homelessness can look like from an individual and systems-level perspective – confronting common misconceptions, emphasizing the impacts of climate change on marginalized and rural communities, and highlighting the opportunities to address this issue by partnering with and centering people with lived experience.  Tune in now to listen to guest host Amber Woodside and speakers Lisa and Mitra as they share their lived experiences and professional insights. In addition, as we enter into this season of giving and gratitude, consider ways you might be able to give back to your community members experiencing homelessness, especially youth. Disclaimer: This episode discusses topics of climate change, natural disasters, loss, death, discrimination, and homelessness. Please prioritize your mental health and consider if you are ready to listen to this episode. If you or someone you know is experiencing suicidal thoughts or a crisis, please call the Suicide and Crisis Lifeline by dialing 988. You can also sign up to join virtual sharing and listening sessions for people experiencing climate anxiety at www.climateawakening.org. Additionally, the findings and conclusions in this podcast shared by Mitra Kashani are those of the speaker and do not necessarily represent the views of the Centers for Disease Control and Prevention.Resources: YVA Resource Kit Study From Abt Projects: Thousands of Additional Deaths Each Year Due to Climate Change-Induced Heat Report: Climate Change and the Los Angeles’ Homelessness Response System SAMHSA Homelessness Programs & Resources  HHS Homelessness Programs & Resources Guide: Make a Homeless Care Package That Actually Helps Assemble Care Kits for the Homeless 

Listen to this MCH Bridges episode to hear three members of The Adolescent Champion Teen Advisory Council (TAC TAC), Melanie Avila, Fanta Guindo, and Yeina Han, share what adolescent and young adult mental health looks like in their communities, what they have experienced, and what needs to change. This episode talks about important concepts like positive youth development, youth-friendly services, and culturally competent care. It also identifies strategies for addressing barriers to youth seeking and accessing mental health services. This episode discusses mental health issues and mentions suicide. If you or someone you know is experiencing suicidal thoughts or a crisis, please dial 988 immediately to call the Suicide Prevention Lifeline or text HOME to the Crisis Text Line at 741741. Additionally, the National Maternal Mental Health Hotline provides support before, during, and after pregnancy. Call or text 1-833-9-HELP4MOMS (1-833-943-5746). TTY users can use a preferred relay service or dial 711 and then 988 or 1-833-943-5746. Both services are free, confidential, and available 24/7. Resources:·      AMCHP’s Adolescent Health Current Initiatives·       Adolescent Health Initiative·       The Adolescent Champion Teen Advisory Council (TAC TAC)·       Emerging Topical Issues in Adolescent and Young Adult Mental Health (AMCHP Learning Module)·       Innovation in Mental Health Service Delivery (AMCHP Learning Module) ·       Integration of Mental Health into Primary Care for Adolescents and Young Adults (AMCHP Learning Module)·       MCH Workforce Capacity and Skillsets for Improving Mental Health Care Systems for AYAs (AMCHP Learning Module) ·       Screen to Intervene (AMCHP’s blog dedicated to Adolescent & Young Adult Mental Health)

In this MCH Bridges, we talk with AMCHP’s State Public Health Autism Resource Center’s (SPHARC) Autistic Faculty about the Autistic experience in a world that is centered around neurotypical people. You’ll hear from Autistic Faculty members Dave Caudel, Morénike Giwa Onaiwu, and Haley Moss about neurodiversity, ways that Autistic and non-Autistic people are similar and how we are all connected as humans, and what celebrating autistic joy means to them. Resources: Frist Center for Autism and Innovation   Morénike Giwa Onaiwu’s information and frequently asked questions page   Morenike Giwa Onaiwu resources page  Haley Moss’ website   SPHARC team (SPHARC@amchp.org) and SPHARC website   Autistic Self-Advocacy Network   Autistic Representation Database  Autistic Archive  Autistic Community and the Neurodiversity Movement 

This bonus episode captures the experience of attending the AMCHP Annual Conference from a variety of perspectives. As past attendees, our guest speakers shared what they learned, some pro tips for taking advantage of conference opportunities, and why it's important that we encourage and support youth and young adults, family leaders, community-rooted organizations, tribal government representatives, and students and early career professionals to attend the AMCHP Annual Conference. You’ll hear from Katherine Harvey, representing the perspective of a young adult leader, and Dana Yarbrough, a family leader and proud parent of a daughter with disabilities and special healthcare needs. You will also hear from Quatia (Q) Osorio, doula and founder of Our Journ3i, and Xenia Mendez, alumna of our Graduate Student Epidemiology Program (GSEP) representing students and early career professionals. Conference links (updated)Register for AMCHP 2024Visit our conference platform Explore the conference theme Support CBOs, tribal entity representatives, family leaders, and youth at AMCHP 2024 Resources  Center for Family Involvement Parent to Parent USA  Family to Family Health Information Centers  Our Journ3i, LLC 

This interview episode highlights the journeys of Kimarie and Dalecia as they found their passion and purpose in helping lactating persons achieve their breastfeeding goals. Intertwining lived experience and the desire to make a difference, you will hear how Dalecia and Kimarie found their calling in breastfeeding work. You will learn about how breastfeeding has been a healing journey and a way to reconnect with our past. You will also hear about the ongoing challenges in accessing adequate and culturally appropriate breastfeeding, especially for black and brown communities. Guests: Dr. Kimarie Bugg, Chief Empowerment Office and Change Leader, Reaching Our Sisters Everywhere, Inc. (ROSE)Dalecia Young, Founder and Full Spectrum Doula, Due North Support Services Resources: Reaching Our Sisters Everywhere, Inc (ROSE)La Leche League Centers for Disease Control and Prevention Breastfeeding Resources Library American Academy of Pediatrics Breastfeeding Resources WIC Breastfeeding Support