AUCD Network Narratives

Yetta Myrick is a mother of a teenage son on the autism spectrum. She is the founder and president of DC Autism Parents –a non-profit organization. In this episode, Jeiri is joined by Yetta to discuss her role as a mother and advocate, and how she promotes developmental monitoring to get her community the help, they need to access services for their children. Together, Jeiri and Yetta talk about how Yetta’s personal life has influenced and motivated the work she’s doing in advocacy. Yetta also reveals her personal fears and concerns as a mom, and why support is crucial to sustaining the work she does as an advocate. They discuss the harsh realities of dealing with the public’s perception, specifically how this problem unfairly falls on Black and Brown communities. And finally, they wrap this episode up with Yetta’s advice for dismantling racism within our network. Tune in and listen as Yetta promotes resiliency in Black families with young children, especially in the modern climate of the pandemic.This episode was supported in part by an Association of University Centers on Disabilities/Centers for Disease Control and Prevention cooperative agreement (6 NU38OT000280-02-02).Produced by Adode Media; a full-service podcast production agency.

Stephanie Meredith is a lend faculty and letter case medical outreach director. Her roles include creating and disseminating information about genetic conditions and building relationships between national leaders in the disability and medical communities. She is the author of the nationally recommended “Understanding a Down Syndrome Diagnosis”, and co-author of “Diagnosis to: A Pregnant Mother’s Guide to Down Syndrome”, and “Welcoming a Newborn with Down Syndrome: A New Parent’s Guide”. She joins the podcast to share why genetics is such a complex issue in the disability field. She also shares how she infuses her work in genetics with her work in advocacy.Stephanie discusses how she helps clinicians confront ableism and racism in the history of eugenics, why it’s key to having an action plan to bring people together, and what needs to happen to bring together the disability and genetics community. Listen in to hear more about her perspectives on ethics, genetics, and eugenics.This episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

Welcome to another episode of AUCD Network Narratives, the podcast that shares real stories from our members. Home and community-based services(HCBS) are critical for people with disabilities to live the life they choose for themselves. The HCBS Settings Rule ensures that the services people receive in their home are quality and that people with disabilities can direct their own lives. However, many services available today do not live up to the intent of the settings rule, which leaves many individuals underserved and without control over their lives and services. These disparities can lead to people with disabilities having their rights to bodily autonomy taken from them. Enter Blake Perry, along-standing advocate with valuable first-hand experience advocating for Home and Community-Based Services, including in his role as a Community Transition Trainer at the Michigan UCEDD. Perry understands the impact these services can have on an individual, and how improvements to HCBS can make a huge difference in an individual’s life. On today’s episode, we discuss Perry’s background as an advocate, how his lived experience helped inform his current advocacy, and ways to help address disparities in home-based care.This was a powerful and illuminating conversation centered on the right to privacy and the many barriers and disparities that exist in the system, especially for people with disabilities from the LGBTQ+ community and people under guardianship. It is critically important to address these concerns to truly give disabled persons their right to live the life they want to live. Tune in and learn more about HCBS advocacy and how we can help implement quality home and community-based services. Thanks for joining us!This episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

Linguistically responsive services are incredibly important in the development of children. However, cultural awareness is a crucial piece of providing the best and most supportive services for a diverse group of individuals.Dr. Debra Vigil is a professor of speech pathology at the University of Nevada, Reno. She is also a "Learn the Signs. Act Early. Ambassador" to Nevada. Her work includes conducting research in the areas of cultural differences in typically developing children in order to help determine a difference or disorder for diagnostic purposes.She’s also recently published work related to diversity in graduate admission practices in communication disorders. She joins us today to share the way culture impacts service provision and how she prepares speech and language pathologists to practice cultural humility. Dr. Vigil dives into her journey as a speech change pathologist, the biggest obstacle in her line of work, and what cultural humility and competency look like. She also discusses why speech therapy involves the whole family and not just the individual child.Join us for this insightful episode all about cultural humility, impact, and awareness, in the field of linguistically responsive services.This episode was supported in part by an Association of University Centers on Disabilities/Centers for Disease Control and Prevention cooperative agreement (6 NU38OT000280-02-02).Produced by Adode Media; a full-service podcast production agency.

Today, Jeiri is joined by her colleague and LEND director, Jen Smith. Dr. Smith is a clinical psychologist and board-certified behavior analyst, specializing in treating children and adolescents with intellectual and developmental disabilities, including autism spectrum disorder. Dr. Smith oversees the Lend program at Cincinnati Children’s Medical Center in Ohio, and she is also the community outreach coordinator for the Kelly O’Leary Center for Autism Spectrum Disorders. Today, she discusses what the Lend Program Quality Improvement Network is, and how it helps interdisciplinary training and developmental disabilities. She shares the process of writing a paper and the findings that came out of that process. She also discusses the goal of LPQI and the barriers that exist with using it. Dr. Smith discusses how LPQI helps families and self-advocates on their journey, and why programs need the data from LPQI to create stronger, better programs. Tune in to this episode to hear more about LPQI and the benefits of having this data.This podcast episode is provided in partial fulfillment of tasks outlined in a cooperative agreement (#UA5MC11068) between AUCD and the Maternal and Child Health Bureau (MCHB). The contents do not necessarily reflect the views or policies of MCHB, the Health Resources Services Administration, U.S. Department of Health and Human Services, or the U.S. Government. Produced by Adode Media; a full-service podcast production agency.

Being an advocate in any field comes with a set of challenges. No one knows that better than Ida Winters. Ida Winters is a Black mother of three young men with special healthcare needs, one of whom has autism. She’s also a healthcare advocate who facilitates a support group for the autism society of Southern Wisconsin. Ida joins Jeiri for a conversation about how she bridges the gap between families and providers. She shares a behind-the-scenes look at her style of advocacy and how she developed it organically through her own experience with her family. Ida also shares her thoughts on why so many people might struggle with trusting professionals in healthcare, along with her biggest barrier when entering the advocacy arena. Then, Ida shares her challenges as a Black family leader at her center. And finally, she wraps up the episode with her advice for Black and Brown families who want to improve their connection to the community.This episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

In today’s episode, Jeiri is joined by her colleauge, Sabrina Smith. Sabrina Smith is a senior health project coordinator for the Strong Center for Developmental Disabilities. Together, Jeiri and Sabrina co-lead a diversity, equity, and inclusion forum for the developmental-behavioral pediatrics division.During their conversation, Jeiri and Sabrina take you behind the scenes of what their work looks like, the obstacles they face, where they feel a sense of accomplishment, and what their important work means to their center, community, and city. They share how they keep one another motivated and inspired to keep going in this line of work, what they’ve been able to accomplish, and they celebrate the impact of their work on their community and city. Sabrina also shares the progress she sees from their collective work, as well as advice or other centers that are trying to pave the way forward for DEI work.This episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

In today’s episode, Jeiri is joined by Shayla Collins and Maureen Johnson. Shayla Collins is a staff member at AUCD and a wife and mother of two. Maureen Johnson is a program specialist at AUCD and provides technical support to university based interdisciplinary training and research programs. Furthermore, Maureen works on leadership and professional development activities for early career professionals, family advocates, and self advocates through the Emerging Leaders community. She was also selected as an Emerging Leader of Color Fellow at the National Academy of State Health Policy in April of 2022. Shayla kicks off the episode by sharing her journey at AUCD, and Maureen shares her vision for the emerging leader spot. Maureen also shares her experience in the emerging leader space and what she hopes to leave behind as part of her legacy as Shayla shares why her passion as an emerging leader is what she hopes to leave behind. Jeiri, Shayla, and Maureen have a conversation about both their individual advocacy style, their leadership journey, as well as opportunities for leadership development within AUCD.This podcast episode is provided in partial fulfillment of tasks outlined in a cooperative agreement (#UA5MC11068) between AUCD and the Maternal and Child Health Bureau (MCHB). The contents do not necessarily reflect the views or policies of MCHB, the Health Resources Services Administration, U.S. Department of Health and Human Services, or the U.S. Government. Produced by Adode Media; a full-service podcast production agency.

In this episode, we’re joined by none other than Dr. Carol Salas. Dr. Carol Salas is the president of the board of AUCD Puerto Rico. She’s also a doctor in clinical psychology and a graduate of the National Disability Leadership Institute. Currently, she’s a faculty of the Graduate School of Public Health at the University of Puerto Rico. Today, she joins us to discuss the barriers that are in place and why we need to push past them, so everyone has an opportunity to live the life they want to live. We also discuss Dr. Carol Salas’ entry into working in equity, and what those barriers that are in place are, and how we can push past them. Join us for this discussion all about fighting for equity, where equity truly comes from, and how we can preserve our lives in order to survive.This episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

Micah Peace and Beth Grosso are co-researchers at the Center for Start Services at the University of New Hampshire. Micah is also an autistic multiply disabled advocate and community organizer from Louisville Kentucy, and Beth has a background in leadership, training development, qualitative research, and clinical supervision.In today’s episode, Micah and Beth discuss the Truth and Reconciliation Project and how they’ve navigated some of the difficulties of participatory co-researching. They kick off the episode by diving into Micah’s experience participating in the process of research in disability. Beth shares what she has come to learn about research over the years, and what barriers both Micah and Beth face in their line of work. Micah and Beth also share their thoughts and advice on becoming more conscious of your unconscious biases, what their respective motivations are behind their work and research, and what the overarching goal of the Truth and Reconciliation project is.Episode Resources: Engaging Young Adults with IDD-MH and Researchers in Comparative Effectiveness ResearchThis episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

What do equity and employment mean in the realms of economic justice? This is the question that Jeiri seeks to answer in today’s episode. Guiding this conversation is Chisa O’Quinn from Wise, a supported employment training and technical assistance center in Washington state.With over 18 years of experience working with people from diverse communities, Chisa is a supported employment strategist and facilitator who is dedicated to centering equity and belonging. In today’s episode, Chisa shares her style of advocacy, how she keeps motivated in this difficult line of work, and what she has done in the equity space thus far. She also shares how she aims for inclusivity of intersectionality when she’s challenging employment specialists, and why it’s so important for our culture to shift its mindset around topics of empowerment, inclusion, and belonging.From discussions around the shift out of scarcity mindset to how Chisa aims to cultivate and create more opportunities for people within the employment realm, this episode is a deep dive into truly understanding the roles of equity and employment in the fight for economic justice.Episode Resources: Diversity, Equity, and Inclusion Resource Snapshot GuideThis episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

Welcome to season 2 of AUCD Network Narratives - a show that aims to cover a lot of national disability issues while handing the mic over to people to share their stories. Your host, Jeiri Flores, is here to kick off the second season by introducing herself, sharing what her vision for the show is, and sharing her passion for advocacy.In this short but sweet episode, Jeiri shares her background on how she got into advocacy work. She also shares what sustains her in this particular line of work, and why her family is a key piece that keeps her motivated and inspired. Finally, Jeiri shares what this podcast means to the community and her vision for what this podcast can achieve.Whether you’re a new or returning listener, this episode is a great way to connect with our community and our mission to leave a slice of the world a better place. Tune in, get to know Jeiri, and let’s kick of season 2 together.This episode is funded by the Administration for Community Living through technical assistance contract # HHSP75P00121C00057. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

Join Jeiri, as she thanks you for tuning in to Season 1 of the AUCD Network Narratives podcast. Jeiri reflects on what the 1st season has had in stores and what's to come in season 2.AUCD Network has had the pleasure of hearing amazing stories from members and insights on ways we to work together to help advocate and educate the community at large.View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

Representation is essential in advocacy work and the push for legislation. When it comes to autism and disability advocacy, listening, engaging, and understanding the experiences of people of color is crucial to changing the narrative. Elizabeth Morgan joins the show to help us understand the importance of connecting with stories of people of color with disabilities and their families.Elizabeth is an Assistant Professor in Educational Leadership at the University of California, Sacramento, and program coordinator for the CED at the Mind Institute. Her area of research includes early childhood and early intervention services with a specific interest in underrepresented populations.Jeiri and Elizabeth’s conversation explores the ways in which representation matters. Elizabeth explains the importance of bringing pieces of your identity as a person of color into the classroom and curriculum. She also takes us behind the scenes of her thesis, how she dug deep into the conversations surrounding disparities, and why she felt empowered as a Black mother with a learning disability to create an impact by simply being herself. Elizabeth also speaks truth to power, of the dangers of terms and labels. She sparks the conversation of why a careless approach to language can be a huge disservice to people of color and people of color with disabilities.This is an important conversation that highlights the multifaceted nature of advocacy. Tune in as Elizabeth and Jeiri share the importance of highlighting Black and Brown voices, and why we should fight for systems that work for everyone.View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

If you’re anything like Jeiri, you might not be familiar with the term “cultural broker”. That is why Jeiri is joined by Angela West. Angela is a multicultural specialist who serves families and professionals by educating them of the cultural impact on disability and connecting them to resources.Today, Angela is introducing you to what being a cultural broker is like. She talks about her experience being an individual with physical disabilities and the challenges she faces as she bridges the gap between cultural backgrounds and disabilities in communities. Angela also opens up about the impact she’s noticed on communities from her work such as seeing families gain access to resources which change their lives.From her favorite parts of being a cultural broker to the real-life impact that her work has, Angela, shares the important changes she’s set into motion, why she loves working with advocates, and her best advice for those looking at becoming or creating a cultural broker program at their UCEDD.View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

George Gotto has experienced the network from many phases and positions. Today, he is the UCEDD Director of the University of Missouri Kansas City's Institute for Human Development in Kansas City, Missouri. He is trained as a medical anthropologist with an emphasis on community-based research and cross-cultural perspectives on health and discipline.For most of George’s career, he has experienced several positions within the network as he worked as both a trainee and an employee in Arizona, Kansas, and Missouri before taking his role as director. In today’s episode, Jeiri is chatting with George all about his experience growing within the network.Jeiri asks George about his top focus as a director from removing barriers from programs to increasing diversity within the network’s leadership. George shares the obstacles he faces in his pursuit of creating a more equitable process. He talks about the challenges that come with diversifying staff and how working closely with human resources made things easier.If you’re interested in growing within the network, this episode with George is for you. Tune in as George shares his story, what motivates him, how he fell in love with community-based research and the impact that comes from it, and his advice for youths who are working towards being more active. View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

When it comes to creating a  self-advocacy curriculum, teamwork really does make the dream work. It takes a deep and patient understanding of the history and culture of the many walks of life. Jairo Arana joins the AUCD Network Narratives podcast today to share his advice on how we can improve self-advocacy curriculums within our programs.Jairo’s journey in self-advocacy began after being diagnosed late in life with autism and taking a three-day intensive pipeline leadership training program. This sparked his self-advocacy journey which eventually led him to become the full-time clinical program coordinator at the Mailman Center for Child Development. In this episode, Jairo shares his personal story of self-advocacy, leadership, and impact. He opens up about his creative passion for telling stories and the arts. He talks about the importance of seeing diversity and inclusion in his favorite shows and how this has impacted the stories he wants to tell. Jairo takes you behind the scenes of his leadership program and how finding his mentor impacted his work and self-advocacy journey. Listen to Jairo’s story as he shares important stories about self-advocacy, his journey through his late diagnosis, what he would tell his younger self today, and why learning the history, understanding the culture, and teamwork is the way to a more empathetic and inclusive future.View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded partially by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.This podcast episode is provided in partial fulfillment of tasks outlined in a cooperative agreement (#UA5MC11068) between AUCD and the Maternal and Child Health Bureau (MCHB). The contents do not necessarily reflect the views or policies of MCHB, the Health Resources Services Administration, U.S. Department of Health and Human Services, or the U.S. Government.Produced by Adode Media; a full-service podcast production agency.

Did you know that there isn’t a word for “disability” across indigenous languages? Instead, there are different terminologies used amongst indigenous communities. If you’re wondering what inclusivity and advocacy for disabilities in Indigenous cultures look like, this episode is for you.Today, Jeiri sits down with Jim Warne, who is the Director of Community Engagement and Diversity at the University of South Dakota’s Center for Disabilities Oyate’ Circle. The Oyate’ Circle addresses indigenous disability issues for South Dakota’s tribal nations. He is also President of Warrior Society Development, LLC., a consultant with the University of Arizona, and an Emmy nominated filmmaker.In their conversation, Jim shares his motivation and his why behind the Oyate’ Circle and the work that they do. He also talks about the early stages of setting parameters of ADA and the growing pains that came with it. Jim shares what disability and disability advocacy looks like within indigenous communities, and how he has found the strength to pave the way for future generations to come. Tune in as Jim and Jeiri share personal stories about their advocacy,  families, and the legacy they hope to leave behind.View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

When it comes to creating change within our network and communities, it is important to make sure that our resources are culturally and linguistically appropriate. Maribel Hernandez does just that in her important role at the Mind Institute. She was born in Mexico and moved to the United States 26 years ago. Today, she’s a proud mother of 2 sons ages 19 and 21, who are both autistic young adults.In this thoughtful conversation, Jeiri and Maribel discuss the hardest thing Maribel had to learn when she first adapted to this world of service and the new language that came with it. Maribel shares the value and comfort she found in her support group, especially as a Hispanic woman. Together, they discuss a dream situation in which families and individuals will have access to information in a careful step-by-step process after receiving a diagnosis, so they can avoid the anxiety and confusion that Googling can bring.Maribel also shares her experience as a mom and how she empowers her sons to be fully themselves and while finding happiness. She shares ways in which she encourages, celebrates, and supports her sons so they will feel happy and confident. Finally, Maribel shares what fun looks like from her community to her home, especially during the difficult times of the pandemic.This is a heartfelt and thoughtful episode where Maribel shares her knowledge and experience. Tune in and gain an inside look at how she supports her family, community, as well as the legacy she wants to leave for generations to come.View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, the US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.

One of the most important tools to add to your toolbelt as an advocate or a researcher is the power of storytelling. Sharing stories of lived experiences is a powerful tool that can evoke empathy, compassion, and an understanding of different walks of life.Today, Jeiri is joined by Morénike Giwa Onaiwu, an educator, writer, public speaker, parent, global advocate, a professional and disabled non-binary woman of color, and daughter of immigrants. They are also a member of the Autistic Researcher Review Board for the Autism Intervention Research Network on Physical Health (AIR-P) project. She is passionate about human rights, justice, and inclusion with her vast advocacy work related to HIV awareness, gender disability, racial equity, and more. Morénike joins the show today to share their expertise on storytelling, especially when it comes to including lived experiences in research and writing. They share their knowledge on researching and how new researchers can frame their process. Jeiri and Morénike both tell their stories of being a young advocate as a bilingual person of color. They have an important discussion on the need for respectful, affirming, and accurate language and the difference between person-first language versus identity-first language. This is an eye-opening conversation about the immersive power of storytelling and how stories fuel change within advocacy and research. Tune in and get ready to be inspired.View all episodes and transcripts at http://www.aucd.org/podcastThis episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.Produced by Adode Media; a full-service podcast production agency.