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In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Wesley Anderson, Director of Employment and Community Services at the National Association of State Directors of Developmental Disabilities Services (NASDDDS). Live from Salt Lake City, they dive deep into the critical connection between employment and health outcomes for individuals with intellectual and developmental disabilities (IDD). Wesley discusses his work co-leading the State Employment Leadership Network, a collaborative effort with 26 U.S. states aimed at integrating employment across all levels of support systems. Learn how employment isn't just about earning a paycheck—it's a powerful social determinant of health that affects access to food, healthcare, transportation, social inclusion, and overall wellbeing. From dismantling common misconceptions about hiring people with disabilities to explaining how employers can access support services at no cost, Wesley delivers actionable insight for businesses, caregivers, and policymakers alike. He also shares his personal journey into the field and offers three powerful takeaways for anyone looking to make a difference in the IDD community. Whether you're an employer, advocate, support provider, or simply curious about how inclusive employment can shape lives, this episode will expand your understanding and inspire you to act.
In this powerful episode of IDD Health Matters, Dr. Craig Escudé welcomes Kathryn Pears, Chief Operations Officer of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). With over 40 years of experience in the field of dementia, Kathryn shares her personal and professional journey, beginning with her father's early-onset Alzheimer's diagnosis, and how it ultimately led her to advocate for individuals with intellectual disabilities who are aging and at risk for dementia. Kathryn discusses the groundbreaking work of the NTG, including their development of the Early Detection Screen for Dementia (NTG-EDSD)—a free, intuitive tool used nationwide to help caregivers identify subtle changes that could indicate early signs of dementia in people with IDD. She also dives into NTG's national curriculum, which has trained thousands of frontline staff, healthcare professionals, and even law enforcement on how to provide compassionate, effective care for aging individuals with IDD and dementia. From federal advocacy and workforce training to innovative partnerships in Texas aimed at improving emergency responses, Kathryn and the NTG are changing the landscape of aging and dementia care for this often-overlooked population. Tune in to learn three key takeaways from Kathryn's decades of experience: Don't assume behavioral changes equal dementia—rule out treatable conditions first. The heart of quality care is treating others the way you'd want to be treated. You don't need to be an expert—just be informed enough to advocate. Visit www.theNTG.org to access free resources, publications, and tools mentioned in this episode.
In this powerful episode of IDD Health Matters, host Dr. Craig Escudé sits down with Dr. Mike Cummings, Vice Chair of Psychiatry at the University of Buffalo School of Medicine and Medical Director for several psychiatric programs across New York State. Dr. Cummings brings a wealth of experience from leading New York's busiest psychiatric ER to developing innovative programs like START and APEC that provide person-centered psychiatric support for individuals with intellectual and developmental disabilities (IDD). Together, they unpack the challenges of polypharmacy, the importance of understanding behavior as communication, and how to empower families and individuals through education and collaborative care. Dr. Cummings also shares insights into his YouTube series Coffee Talk with Mike and Janelle, which aims to demystify psychiatric care for families and caregivers in the IDD community. From crisis prevention to positive psychology, this episode is a must-listen for healthcare providers, support professionals, and anyone committed to improving the quality of mental health care for people with IDD.
Best Buddies International is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, inclusive living, and family support for individuals with intellectual and developmental disabilities (IDD).Lindsay Jewett is the Director of Mission Advancement for the Rochester Office of Best Buddies. In this episode we discuss why she was drawn to working with individuals with intellectual and developmental disabilities and how her personal mission has evolved over the years. We also spend time discussing the amazing work of the local, national, and international arms of this nonprofit organization.Website: https://www.bestbuddies.org/newyork/Support the show
On this episode of the Special Chronicles Podcast Series: “A Recap of Turin 2025,” Daniel Smrokowski sits down with Shawn Ferguson, the Chief of Global Government Relations at Special Olympics , to explore the mission and impact of the Special Olympics Global Coalition for Inclusion . The Coalition is uniting global leaders, governments, and advocates to drive systemic change for people with intellectual and developmental disabilities (IDD). Together, they are working to create a more inclusive world through sport, education, and social integration. Shawn takes us behind the scenes of this important global initiative, discussing its origin, growth, and the key milestones in the Coalition's journey. We learn about the significance of the Coalition's gathering during the Special Olympics World Winter Games in Turin, Italy, and how it has elevated the mission of inclusion on the world stage. Through Unified Schools® and Unified Sports®, the Coalition is transforming classrooms and communities, making inclusive education and social cohesion a reality. Shawn shares powerful success stories, highlights the importance of financial investment in sustainable change, and explains how public-private partnerships are creating long-term solutions for individuals with IDD. As the Coalition expands, Shawn outlines the challenges they face, how they measure success, and the future of inclusive education and systemic change. He also encourages individuals and organizations to get involved and make a difference. If you're passionate about inclusion and want to learn how we can all contribute to a world where individuals with intellectual disabilities are celebrated and respected, this episode is for you! Topics Covered in This Episode: What is the Special Olympics Global Coalition for Inclusion? The significance of the Coalition's gathering during the Special Olympics World Winter Games in Turin, Italy. Key milestones and global impact of the Coalition. The role of governments, multilateral organizations, civil society, and the private sector in driving inclusion. Success stories and transformative examples from the Coalition's work. The importance of Unified Schools® and Unified Sports® in fostering inclusion. How financial investments are helping to make inclusive education a tangible reality. The role of public-private partnerships in driving sustainable change. Overcoming challenges in advancing systemic change for people with IDD. How the Coalition measures success and evaluates its impact. The future of the Special Olympics Global Coalition for Inclusion and how you can get involved. Listen now to hear Shawn's insights on this transformative global initiative and how you can be part of creating lasting change for individuals with intellectual and developmental disabilities. Episode 770 ShowNotes & Links: SpecialChronicles.com/Podcast770
In this episode of IDD Health Matters, Dr. Craig Escudé is joined by Ricardo Ortega and Babar Nawaz of iCare Manager—an innovative electronic health record (EHR) company revolutionizing care for people with intellectual and developmental disabilities (IDD). Together, they explore how technology can improve efficiency, documentation, and most importantly, the quality of care delivered by providers across 25 states and counting. Ricardo and Babar share their insights into the unique challenges of healthcare in the IDD field, such as state-specific compliance, staffing shortages, and underfunding. Learn how iCare Manager was built from the ground up—with direct input from DSPs, nurses, coordinators, and executives—to create a one-stop, user-friendly solution that empowers providers to spend more time supporting individuals and less time on paperwork. The conversation also looks ahead to the future of healthcare technology, highlighting the exciting (and sometimes scary!) potential of artificial intelligence (AI) in automating assessments, generating personalized care plans, and enhancing service delivery—all while preserving the vital human touch. Topics include: The origin and mission of iCare Manager Addressing compliance across state systems EHR systems built by providers, for providers How AI can improve outcomes and efficiency The importance of person-centered planning and funding in the IDD space Whether you're a provider, administrator, or simply passionate about inclusive healthcare, this episode offers powerful insight into how technology and compassion can go hand-in-hand to support people with IDD.
Emily Kircher-Morris welcomes registered dietician Jackie Silver, who specializes in nutrition for neurodivergent people. They discuss the unique challenges faced by the neurodiversity community, including sensory differences, interoception, and executive functioning barriers that complicate meal planning and nutrition. They also talk about practical strategies to support the neurodivergent people in your life with making good dietary choices. They identify and analyze disordered eating patterns, and discuss the significance of self-compassion in the journey towards better nutrition. TAKEAWAYS Many dietitians overlook the unique needs of neurodivergent clients. Meal planning can be overwhelming for those with executive dysfunction. It's important to work within people's "safe foods." Sensory sensitivities can greatly impact food choices and preferences. Interoception plays a crucial role in recognizing hunger and fullness cues. Mechanical eating can help those with suppressed appetites due to medication. Small, manageable changes can lead to significant improvements in nutrition. Disordered eating patterns are common among neurodivergent people, especially with ADHD. The window will open soon to join the Educator Hub! If you're a teacher, administrator, school counselor, or parent of a neurodivergent student, this community is where you can share, ask questions, and find training that will help you along your journey. Please come join us. Jackie Silver is a NYC-based Registered Dietitian and founder of Jackie Silver Nutrition, a virtual private practice specializing in supporting neurodivergent kids, teens, and adults with ADHD, ASD and IDD. Her practice is neurodiversity-affirming, nonjudgmental, and weight-inclusive. he holds a Master of Health Science in Nutrition Communication from Toronto Metropolitan University and has additional training in mindful eating and sensory-based feeding therapy. Jackie works with clients across New York, Pennsylvania, Connecticut, Massachusetts, Ontario, and beyond, offering support with meal planning, selective eating, digestive health, chronic disease management, and more. In her free time, Jackie enjoys rock climbing, yoga, Pilates, swimming, travel, museums, and spending time with family and friends. BACKGROUND READING Jackie's website, Instagram, Free Grab & Go Foods list, Jackie's meal prep course, Jackie's consultation
Learn how Samantha VanSchoik, VP of Strategic Partnerships at Corporation for Independent Living (CIL), explores the potential development of community housing options in rural communities for individuals with IDD, mental health, recovery, or ABI issues. The visit CIL's website, go to: https://www.cil.org/ To reach Samantha, email her at svanschoick@cil.org.
In this week's episode, John and Cynthia explore the incredible insights and untapped potential of Direct Support Professionals (DSPs). Our conversation will cover: Why DSPs often feel unheard within their organizations and how to change that Practical strategies for breaking down "invisible barriers" between leadership and frontline staff The importance of cultural awareness and diversity in our caregiving workforce Creative ways to show appreciation that truly resonate with different people We'll share actionable tips for creating genuine listening opportunities, whether you're a family member working with DSPs, an organizational leader, or a DSP yourself looking to make your voice heard. Got a story about feeling truly heard and valued in your work supporting people with I/DD? We'd love to hear from you! Email us at Quillopod@myquillo.com. Episode Transcript
In this episode of the Becker's Payer Issues Podcast, Jakob Emerson speaks with Dr. Tracy Gayeski, Chief Health Officer at Catalight, a nonprofit organization dedicated to transforming care for individuals with autism and intellectual and developmental disabilities (I/DD). Dr. Gayeski discusses how Catalight is addressing affordability, individualized care at scale, and social determinants of health—all while preparing for the transformative role AI will play in the next two years. Tune in for a thoughtful exploration of what meaningful, sustainable, and person-centered care really looks like.This episode is sponsored by Catalight.
Welcome to the final episode of Season 10 of Waves of Awareness! We're wrapping up this season with a conversation with the Waves Early Learning leadership team: Gina, Jen and Katie. Our usual co-hosts for this episode are Waves CEO Staci Davis and Waves adult Johnny Sunshine. Johnny shares a few life updates as well as what he's looking forward to this summer. The group then dives into all things Early Learning: why it matters, what referrals look like, some of the best practices they utilize, and a huge milestone Waves Early Learning just hit. Waves considers it a privilege to be able to serve individuals with intellectual and developmental disabilties (IDD) across all seasons of life, and we're excited to highlight the youngest ones this week! Tune in for important information about Early Intervention, some sweet stories from some of our Early Interventionists themselves, and lots of laughs. Be sure to follow us on socials @waves_serves to keep up with the tips our Early Learning team shares every Tuesday! Stay tuned for updated on Season 11 and the amazing guests WOA will be hosting. ______________________________________ To learn more about Waves go to: wavesinc.com For volunteer opportunities with Waves go to: https://wavesinc.com/volunteer/ To watch Waves of Awareness on Youtube go to: https://www.youtube.com/@Waves_of_Awareness To learn about Spread The Positive go to: https://spreadthepositive.net/ To learn more about Waves Early Learning, visit: https://wavesinc.com/early-learning-program/ To view Waves Early Learning Tuesday Tips: https://wavesinc.com/early-learning-program/early-learning-tips/
In this insightful episode of IDD Health Matters, Dr. Craig Escudé is joined by nurse educator Michael Sigelman, who brings a wealth of experience and passion to improving healthcare practices for people with intellectual and developmental disabilities (IDD). Michael shares how his early experiences shaped his career and how he now plays a crucial role in training registered nurses and direct support professionals across his state. Together, they discuss the importance of structured nurse education, the value of trained medication employees (TMEs), and the essential role of accurate documentation in providing consistent and person-centered care. Michael also emphasizes the power of listening, knowing individual baselines, and taking time—three simple yet impactful practices that can vastly improve health outcomes. Through real-world examples, Michael and Dr. Escudé highlight the challenges and opportunities in achieving health equity, the significance of interprofessional collaboration, and the critical need for increased clinical training in IDD care. Whether you're a clinician, DSP, policymaker, or advocate, this episode offers actionable insights into creating a more inclusive, responsive, and informed healthcare system.
Next week is DSP Recognition Week (September 8-14, 2024). In this REPLAY episode from 2023, John and Cynthia sit down with John Raffaele, the Director of Educational Services at NADSP. We discuss DSPs (Direct Support Professionals), who they are, and their impact on the IDD community. Resources mentioned in the episode: NADSP Want to share stories with us? Email us at Quillopod@myquillo.com To learn more about Quillo Connect visit MyQuillo.com
In this episode of IDD Health Matters, Dr. Craig Escudé sits down with long-time advocate and leader Shelly Chandler to explore a lifetime of service and passion in the field of intellectual and developmental disabilities (IDD). From growing up immersed in the world of special education to running provider agencies and leading the Iowa Association of Community Providers for 17 years, Shelly shares how her personal and professional journey continues to influence better health outcomes for individuals with IDD. Recorded live at the Kansas InterHab Conference, this conversation dives into the challenges of bridging communication gaps between providers, healthcare professionals, and managed care organizations—and why learning to "speak the same language" is essential for improving equity in healthcare. Shelly also offers key advice on building human-centered relationships, listening without assumptions, and staying relentless in the pursuit of opportunity and dignity for every person with IDD.
In this episode of Quillo Pod, Cynthia Morraz and John Dickerson shed light on the often-overlooked intersection of mental health and the IDD community during Mental Health Awareness Month. They discuss the persistent stigma surrounding mental health challenges, share personal stories that illustrate the importance of being an ally, and offer practical guidance on supporting those experiencing difficulties. The importance of creating spaces where it's "okay not to be okay," and how small acts of kindness and connection can make a meaningful difference in someone's journey. Resources mentioned in the episode: Call or text the Suicide and Crisis Prevention Line at 988 or visit 988lifeline.org Episode Transcript Want to share stories with us? Email us at Quillopod@myquillo.com To learn more about Quillo Connect, visit MyQuillo.com
In this episode, Tony Stuart, CEO of Friends for Life, shares practical, experience-based strategies for individuals with developmental disabilities looking to increase their waiver hours. With over 20 years in the field, Tony explains why using your current waiver is essential, how to properly document medical and functional changes, and how incident reports can influence approval for more support. He also discusses the importance of realistic hour requests, the value of waiver add-ons, and the role of agency providers in advocating for increased care. Whether you're a provider or someone receiving services, this episode is packed with crucial insights that can help you navigate the waiver process more effectively. Are you or someone you support working to increase waiver hours? Tune in and learn how to advocate for the care and support you deserve.
"The enormity of the challenges we have in front of us right now, in terms of the deficit of housing, just requires all of us to work together." This episode revisits the National Housing Supply Summit in March 2025! In this conversation, Devon Tilly and co-host Dennis Steigerwalt chats with Matt Hoffman and Stephen O'Conner about affordable housing, the new administration, and the White Paper: Federal Policy Opportunities to Expand Housing Supply. Request a copy of the White Paper here: https://housingsupply.us/ Our co-host Dennis is active in all things real estate with a specific focus on innovation in the residential development and homebuilding ecosystems. He is a ULI Residential Neighborhood Product Council member, a Professional Builder 40 under 40 recipient, and an active member of Geek Estate. In his spare time he enjoys big adventures with his wife and sons on the water and in the mountains. Dennis is the president of the Housing Innovation Alliance, a future oriented community for production homebuilding. The Housing Innovation Summit is the best place to get engaged + connected where you'll gather insights + have a voice at each turn. The 2025 Summit is co-hosted by the Mascaro Center for Sustainable Innovation at the University of Pittsburgh. We'll be at Phipps Conservatory in the Oakland neighborhood and hosting Innovation in Action tours around Pittsburgh. Matt Hoffman has spent his career applying his strategy, business development, and innovation skills to solving problems that create growth and opportunity in the public, private, and non-profit sectors. With over 20 years' experience building businesses in the housing and technology sectors, in February 2024 he completed a two-year assignment as the Senior Advisor to the Commissioner of the Public Buildings Service at the General Services Administration (GSA), which oversees the U.S. government's civilian real estate portfolio of more than 365 million square feet. His core focus was the implications of “the future of work” on the office portfolio and transitioning federal buildings to net zero emissions. He helped launch the federal government's Workplace Innovation Lab (WIL) and federal coworking offering (think WeWork just for federal employees). He represented GSA on the White House's housing supply interagency policy council. Based in the Washington, DC area, Matt has a passion for finding housing solutions for the Intellectual and Developmental Disabilities (I/DD) community and currently chairs the real estate finance committee of Benedictine Programs & Services, which helps I/DD children and adults achieve their greatest potential. He is a graduate of Harvard's Kennedy School of Government (MPP) and Brown University (BA). Throughout his distinguished career, Dr. O'Connor has been deeply involved in addressing the multifaceted challenges surrounding the crisis in affordable housing. His long and effective history of advocacy focuses on the promotion of equitable housing opportunities through the development of inclusive communities to enhance the quality of life for diverse populations. With a Ph.D. in Planning and Public Policy, Dr. O'Connor's expertise extends across various sectors within the housing spectrum, including affordable housing finance, housing policy analysis, and land use planning. He is often called upon by governmental agencies, political campaigns, and non-profit organizations to help develop effective policy frameworks and practical interventions to address housing disparities. As an educator, Dr. O'Connor is committed to developing the next generation of housing advocates, developers, and policymakers. He serves as a mentor and a teacher, inspiring students to explore the intersection of housing, social equity, and public policy. His dynamic teaching style and hands-on approach are informed by more than thirty years of housing industry experience. Personally, Dr. O'Connor and his wife, Sandy, have served long tenures with several medical mission charities. In addition, they have founded two 501(c)(3) organizations to raise money for cure-focused medical research. They have two children and two beautiful grandsons. Read James Rouse's book: https://a.co/d/4cVwaKN Read the "Abundance" book: https://a.co/d/1N0kr4e Keep up with the Art of Construction (AOC) podcast on Instagram, Facebook, and LinkedIn! Subscribe to us and leave us a review on Apple Podcasts or Spotify!
Zack Gottsagen is breaking barriers and reshaping Hollywood. In this inspiring video, we explore Zack's groundbreaking journey as an actor with Down syndrome—from his unforgettable leading role in The Peanut Butter Falcon alongside Shia LaBeouf and Dakota Johnson to making history as the first person with Down syndrome to present at the Academy Awards. Zack's story is more than a personal triumph—it's a cultural milestone. He's a powerful example of what happens when talent, determination, and true inclusion come together. By pursuing his dream despite all odds, Zack has shown the world that people with developmental disabilities deserve not only visibility but respect and opportunity in the entertainment industry and beyond. Join us as we celebrate Zack Gottsagen's legacy and the vital message he shares with the world: representation matters.
On this episode of IDD Health Matters, Dr. Craig Escudé sits down with two remarkable nurses—Patty Haberkorn and Deanna Cox—at the Illinois Developmental Disabilities Nurses Conference. With a combined four decades of experience supporting people with intellectual and developmental disabilities (IDD), Patty and Deanna share powerful insights into nursing, advocacy, communication, and the often-overlooked emotional rewards of this career path. Patty, who began her journey as a nurse and now serves as Executive Director at Futures Unlimited, and Deanna, a dedicated nurse who found her calling in DD care after working in long-term care, both reflect on how they "fell into the field" and stayed out of passion. They open up about the gaps in nursing education regarding IDD, the importance of understanding non-verbal communication, and the critical role of baseline behavior in diagnosing health issues. This episode covers: The value of advocacy from nurses and direct support professionals Real-world challenges in educating physicians and gaining respect for individuals with IDD Why knowing a person's baseline behavior is crucial for accurate medical care The emotional connection between care staff and the individuals they support Staffing and funding challenges in the IDD sector—and why passion still keeps them going Whether you're a nurse, DSP, administrator, or someone curious about working in disability services, this conversation offers heartfelt stories and essential wisdom about the importance—and joy—of working in this field.
On this episode of IDD Health Matters, Dr. Craig Escudé sits down with two remarkable nurses—Patty Haberkorn and Deanna Cox—at the Illinois Developmental Disabilities Nurses Conference. With a combined four decades of experience supporting people with intellectual and developmental disabilities (IDD), Patty and Deanna share powerful insights into nursing, advocacy, communication, and the often-overlooked emotional rewards of this career path. Patty, who began her journey as a nurse and now serves as Executive Director at Futures Unlimited, and Deanna, a dedicated nurse who found her calling in DD care after working in long-term care, both reflect on how they "fell into the field" and stayed out of passion. They open up about the gaps in nursing education regarding IDD, the importance of understanding non-verbal communication, and the critical role of baseline behavior in diagnosing health issues. This episode covers: The value of advocacy from nurses and direct support professionals Real-world challenges in educating physicians and gaining respect for individuals with IDD Why knowing a person's baseline behavior is crucial for accurate medical care The emotional connection between care staff and the individuals they support Staffing and funding challenges in the IDD sector—and why passion still keeps them going Whether you're a nurse, DSP, administrator, or someone curious about working in disability services, this conversation offers heartfelt stories and essential wisdom about the importance—and joy—of working in this field.
Jessica Awsumb and Hilary Travers are co-leads at Transition TennesseeTimeline: 2:15 Introduction3:15 Hilary's work at Perkins School of the Blind and what led her to Vanderbilt and transitional planning5:00 Jessica's pathway to transitional training and employment for students with IDD.8:13 How do we prepare for transitions (legal and evidence-based practice), which starts at Age 14 in TN. Key points mentioned: - 4 future goals in transitional planning are: post-secondary education, employment, community involvement, and community living. - A Course of Study (9th to 12th grade) is a selection of classes that are needed and individualized to a student to reach their post-secondary goals.- Annual goal to build competency for life skills.- Transition Services- a coordinated set of outcome-based activities to supplement after-school goals ( assigned to parent or third-party provider). 18:00 Job Exploration- What would you like to do for work? Your areas of interest? Explore the skills needed for the job in the community.21:14 Thinking about employment as a family.23:09 Support of job coaching vs natural supports- team-based approach.28:24 Job experiences and work-based learning: rural vs urban. What are students' skills? What is their motivation? What are their supports? It will influence their experience. Another consideration is full vs part-time, self-employed.32:27 VR for formal supports, faith communities are informal supports (these are non-paid opportunities), the Chamber of Commerce, who know the local businesses, and career fairs. 35:00 CTE courses are based on local community needs assessment, and if they align with students' interests, this is a great way for students to gain job skills. 37: 00 Helpful Resources: https://transitiontn.org/ Empowering Youth with Vision Impairments - free resources
Hannah is flipping vintage, crushing fast fashion, and winning over fans with her “thrift with me” videos. SHOW NOTES: How she took advantage of the Poshmark “Entrepreneurs Fund.” Vintage flips. Champion of the secondhand-first movement. Fast fashion stats that will shock you! The cure for fast fashion. Reselling insights and resources. Her favorite Colorado thrift stores. Why her sourcing and “thrift with me” videos are so popular. Her support of the IDD community.
In this inspiring episode of IDD Health Matters with Dr. Craig Escudé, we welcome Tony Thomas, Executive Director of Welcome House in Cleveland, Ohio. With over 24 years of leadership experience, Tony shares his remarkable journey into the field of intellectual and developmental disabilities (IDD) — from a life-changing family discovery to a lifelong career dedicated to empowering individuals and advancing health equity. Tony discusses how frontline Direct Support Professionals (DSPs) are the heart of the disability services field, his innovative initiatives to improve healthcare access for people with IDD, and how Welcome House is creating clear career pathways for DSPs, including specialized medical support roles. He also talks about the urgent need to address workforce shortages and improve wages for caregivers. If you're passionate about making a difference, building a meaningful career, or learning how true inclusion transforms lives, this episode is packed with wisdom, hope, and practical ideas for the future of IDD services.
In this inspiring episode of IDD Health Matters with Dr. Craig Escudé, we welcome Tony Thomas, Executive Director of Welcome House in Cleveland, Ohio. With over 24 years of leadership experience, Tony shares his remarkable journey into the field of intellectual and developmental disabilities (IDD) — from a life-changing family discovery to a lifelong career dedicated to empowering individuals and advancing health equity. Tony discusses how frontline Direct Support Professionals (DSPs) are the heart of the disability services field, his innovative initiatives to improve healthcare access for people with IDD, and how Welcome House is creating clear career pathways for DSPs, including specialized medical support roles. He also talks about the urgent need to address workforce shortages and improve wages for caregivers. If you're passionate about making a difference, building a meaningful career, or learning how true inclusion transforms lives, this episode is packed with wisdom, hope, and practical ideas for the future of IDD services.
This episode is dedicated to honor the memory of Barb Ziegler, the founder of The Trailhead Community. "We are here to celebrate tonight, the opening of this building...we are not at the end of the trail. We are still working on making the trail longer, stronger, and more connected for more people to help solve the greater problem in this community {independent living for IDD adults}." This episode revisits The Trailhead Community at their building opening and ribbon cutting ceremony. If you hear any background noise or laughter, that's because this episode was recorded LIVE in the lobby of The Trailhead Community building in April 2025! In this conversation, Devon Tilly and co-host Matt McMullen chat with various partners at The Trailhead Community! Featured Guests: At 17, James Harper's stepfather told him, “James, you should find a sales job—you could sell anything!” Fast forward 17 years, and sales became his calling. Over the last 10 years, he has sold over $30 million in B2B marketing services and successfully exited two bootstrapped companies. His expertise and passion lie in helping B2B companies scale through effective outbound sales strategies that deliver results. He believes small businesses are the backbone of the economy, and entrepreneurship is its driving force. His mission is simple: to create opportunities that convert. He helps companies scale by blending sales, marketing, and operational strategy. He doesn't just focus on growth—he makes it sustainable by refining operations, improving team performance, and creating scalable systems. If you're looking to grow smarter, not just harder, he's someone worth connecting with. Jeans Mobley worked as an Office Manager for an accounting firm for several years after college. She realized the accounting world was not the best fit and she decided to leap into the nonprofit world with Trailhead Community. Her degree is in Communication with a minor in Leadership Studies. Communication makes the world go 'round! She is passionate about making Trailhead the model for neuro-inclusive housing and building a community that supports one another's ability to thrive. Jim Shipton was born in the Midwest and raised in Story City, Iowa, the heartland as they call it. He loves being from a small town where you have an opportunity to participate in all aspects of life. Jim played football, basketball, golf and learned to work hard in the farming community. He completed one year of undergraduate civil engineering at Iowa State University before transferring to Colorado State University where he met his future wife and received a Bachelor of Science degree in Landscape Architecture. Upon graduation he and his wife, Denise, moved to the San Diego area for several years, gained valuable experience and his first license in 1992, before moving back to the Denver Metro area. He has been delivering his exceptional services to owners and developers in the western region of the US for the last 35 years. Currently he and his wife live in Littleton where they are trying to figure out how to become empty nesters. Jim enjoys outdoor activities, skiing, golfing, camping and all things Ford Bronco. Halie Behr of Behr Benefits is a force of nature in the auction industry, bringing forth the high energy and electricity to fire up a room and keep everyone engaged all night long. As the proud founder and lead auctioneer of Behr Benefits, Halie has spent the last decade raising millions of dollars for charities all over the U.S. Behr is a three-time champion auctioneer, becoming the first and only in history to win both the International Junior Auctioneering Championship in 2013 and the women's division of the International Auctioneering Championship in 2023, competing against the very best in the industry on the world's largest stage. Halie holds the title of Denver's favorite Fundaneer, bringing an unparalleled sense of enthusiasm and passion to maximize fundraising results at benefit auction events. Click this link to see previous episodes over The Trailhead Community. Keep up with the Art of Construction (AOC) podcast on Instagram, Facebook, and LinkedIn! Subscribe to us and leave us a review on Apple Podcasts or Spotify!
Lesson #10: "Plan For The Life Ahead: High School and Young Adulthood" In this final episode of 10 Lessons, Dr. Rick summarizes the lessons covered throughout the podcast, and speaks with three families about how they each navigated their children on the spectrum through high school and beyond. Other areas of discussion include Diploma vs Certificate, Guardianship, and College. Show Notes Organizations and Support Groups Autistic Self Advocacy Network (ASAN): ASAN is a community organizing, self-advocacy, and public policy advocacy and education organization for autistic youth and adults, run by and for autistic adults. Asperger/Autism Network (AANE): AANE offers support groups for autistic teens, parents, and adults, providing both free and fee-based options, with financial assistance available for some groups. Autism Empowerment: Autism Empowerment works with individuals, families, and professionals to help people with Asperger Syndrome and similar autism spectrum profiles build meaningful, connected lives. Autism Support Center (ASC): ASC services are for families with children or young adults who have a diagnosis of autism spectrum disorder (ASD). Transition to Adulthood and Employment: U.S. Department of Education's Office of Special Education and Rehabilitation Services: This office provides a transition guide to postsecondary education and employment for students and youth with disabilities. Social Security Administration's Youth Resources: This page connects youth and young adults with disabilities to important resources and information to achieve education, career, and life goals. Ticket to Work Program: This program supports career development for Social Security disability beneficiaries age 18 through 64 who want to work. PACER's National Parent Center on Transition and Employment: This center educates parents on several aspects of the transition to adulthood for youth with disabilities, including finding a job, employment supports, and disability rights. The Center for Pursuit: This organization provides customized employment planning and assistance for transitioning youth and adults with intellectual and developmental disabilities (IDD), autism, and other similar conditions. WorkMAP Employment Coaching: AANE offers free WorkMAP coaching for post-high school autistic young adults (between the ages of 18 and 30) with employment-related goals in certain areas. Other Helpful Resources: Autism Resources Miramichi Inc. (ARM): ARM offers helpful free resources to individuals with an Autism Spectrum Disorder, their families, community support workers and professionals throughout Northumberland County. Exceptional Lives: Exceptional Lives offers a free Resource Directory, a searchable online database of disability programs and providers, and free How-to Guides. Know Yourself Series: This series offers free resources (videos, PDFs, worksheets) to support autistic teenagers in understanding what being autistic means to them. Adult Autism Health Resources (AAHR): AAHR has more information on legal matters, common medical conditions, communication strategies and many other topics. Autism Social Space: The National Autistic Society provides Autism Social Space, which is free for Autistic adults to join and provides a safe space to meet like-minded people. Great Reference: Pelicano E, Unsa F, et al (2022) A capabilities approach to understanding and supporting autistic adulthood. Nature Reviews/Psychology. Nov, Vol 1 624-639 https://www.researchgate.net/publication/363286009_A_capabilities_approach_to_understanding_and_supporting_autistic_adulthood/
In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Dr. Alice Bacherini, a postdoctoral research fellow at the University of Perugia in Italy, to explore how psychological research is helping dismantle biases in healthcare for people with intellectual and developmental disabilities (IDD). Dr. Bacherini discusses her groundbreaking work developing tools to measure erroneous assumptions and self-efficacy among physicians when treating individuals with IDD. Together, they dive into how clinician attitudes impact health equity, the role of social dominance orientation in perpetuating stereotypes, and why direct interaction and inclusive communication are essential to better care outcomes. Tune in to hear why IDD-specific training—especially hands-on experiences—can shift perspectives and improve quality of care. Dr. Bacherini also shares where to find her published scale, the Beliefs About Adults with ID (BAAID), and her three key pieces of advice for creating a more inclusive healthcare system. Learn more at: replacingrisk.com Career opportunities with Friends for Life: friendsforliferc.com
In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Dr. Alice Bacherini, a postdoctoral research fellow at the University of Perugia in Italy, to explore how psychological research is helping dismantle biases in healthcare for people with intellectual and developmental disabilities (IDD). Dr. Bacherini discusses her groundbreaking work developing tools to measure erroneous assumptions and self-efficacy among physicians when treating individuals with IDD. Together, they dive into how clinician attitudes impact health equity, the role of social dominance orientation in perpetuating stereotypes, and why direct interaction and inclusive communication are essential to better care outcomes. Tune in to hear why IDD-specific training—especially hands-on experiences—can shift perspectives and improve quality of care. Dr. Bacherini also shares where to find her published scale, the Beliefs About Adults with ID (BAAID), and her three key pieces of advice for creating a more inclusive healthcare system. Learn more at: replacingrisk.com Career opportunities with Friends for Life: friendsforliferc.com
Massachusetts Inclusive Postsecondary Education (MAIPSE) Program at Fitchburg State UniversityThe MAIPSE/PIE Program at Fitchburg State University is a program to support students with intellectual and developmental disabilities (IDD), ages 18-22, in partnership districts in the north-central Worcester County, as well as adults with IDD that are 22+ years of age, that have exited school and are receiving special education services through adult services disability agencies such as DDS or MassAbility. The purpose of MAIPSE is to increase the students' academic and career success by being included in the university's community of learners. My guests, Rebekka Farquharson, Program Coordinator and Mike LaVoie, Program Education Coach as well as student Monue Figeroa speak about the program's key objectives student eligibility the goal to locate paid employment for participating students as well as some fundraising events.For more information about this program you can visit https://www.fitchburgstate.edu/academics/massachusetts-inclusive-postsecondary-education-maipse-program.#healthylivingyogaanita #WLPZ #fitchburgstateuniversity #inclusiveeducation #postsecondaryeducation
Description: Julie Moran, DO, Geriatrician and Intellectual and Developmental Disabilities Consultant at Tewksbury Hospital and Clinical Instructor of Medicine at Harvard Medical School, discusses aging with intellectual and developmental disabilities (I/DD). Interviewer: Bethany Chase, DSW, LSW, CESP, Training & Consultation Specialist at The Boggs Center on Disability and Human Development Click for Full Transcript of Episode 36
In this powerful episode of IDD Health Matters, Dr. Craig Escudé sits down with longtime civil rights attorney, disability advocate, and former Acting Administrator of the Administration for Community Living, Alison Barkoff. Now serving as the Hirsch Health Law and Policy Professor at George Washington University's Milken Institute School of Public Health, Alison shares her personal journey rooted in her experiences as a sibling of a person with an intellectual disability—and how that shaped her life's mission to advance health equity, civil rights, and inclusion for people with intellectual and developmental disabilities (IDD). Together, they explore: The historic update to Section 504 of the Rehabilitation Act—modernizing anti-discrimination protections in healthcare for the first time in nearly 50 years. The hard truths about ableism, medical bias, and discriminatory crisis standards of care exposed during the COVID-19 pandemic. The urgent need to incorporate clinical care curricula into medical and health professional training to eliminate health disparities for people with IDD. The challenges of navigating a fragmented service system—and why it's still worth the fight. Alison also shares her top three calls to action for improving the lives of people with IDD: building personal connections, embracing inclusive healthcare reform, and confronting the systemic complexity with commitment and compassion. If you're a healthcare professional, policymaker, or advocate looking to better understand the intersection of disability rights, healthcare, and public policy—this is an episode you don't want to miss.
In this powerful episode of IDD Health Matters, Dr. Craig Escudé sits down with longtime civil rights attorney, disability advocate, and former Acting Administrator of the Administration for Community Living, Alison Barkoff. Now serving as the Hirsch Health Law and Policy Professor at George Washington University's Milken Institute School of Public Health, Alison shares her personal journey rooted in her experiences as a sibling of a person with an intellectual disability—and how that shaped her life's mission to advance health equity, civil rights, and inclusion for people with intellectual and developmental disabilities (IDD). Together, they explore: The historic update to Section 504 of the Rehabilitation Act—modernizing anti-discrimination protections in healthcare for the first time in nearly 50 years. The hard truths about ableism, medical bias, and discriminatory crisis standards of care exposed during the COVID-19 pandemic. The urgent need to incorporate clinical care curricula into medical and health professional training to eliminate health disparities for people with IDD. The challenges of navigating a fragmented service system—and why it's still worth the fight. Alison also shares her top three calls to action for improving the lives of people with IDD: building personal connections, embracing inclusive healthcare reform, and confronting the systemic complexity with commitment and compassion. If you're a healthcare professional, policymaker, or advocate looking to better understand the intersection of disability rights, healthcare, and public policy—this is an episode you don't want to miss.
Send us a textSummary: Lindsay and I talk about coffee, community, and inclusion.________________________________________________________Sponsor: This show is supported by the Top Five Newsletter. If you want a simple and to-the-point update on Raleigh commercial development you can subscribe to the Top Five. It's free if you want it to be!________________________________________________________Big Take Aways:- The power of a single prompt “What would you do with $50K and a gap year?”- 321 Coffee has shipped product to 50 of 50 states.- How to build more inclusive spaces with “sliders.”- Lindsay's dream collaborations.________________________________________________________About Lindsay: Lindsay Wrege is the co-founder and CEO of 321 Coffee, a coffee shop and roaster based in Raleigh, NC that employs individuals with intellectual and developmental disabilities. Her inclusive staff, featuring people with down syndrome, autism, and other forms of neurodiversity, together are modeling inclusion for others to follow. She started this company in her college dorm room, and it now has 5 locations and employs over 50 adults with IDD. Lindsay believes in the power of using business for social impact.Connect with Lindsay: Website | LinkedIn Mentioned in the show:- Lindsay's speaking website.________________________________________________________Sponsor: This show is supported by the Top Five Newsletter. If you want a simple and to-the-point update on Raleigh commercial development you can subscribe to the Top Five. It's free if you want it to be!Show Notes: Welcome to Dirt NC where we talk all about the places and spaces of North Carolina and the people who make them awesome, I am your host Jed Byrne.Throughout my career in engineering, construction, finance, and development, I have covered just about all sides of the land use ecosystem. This show creates an opportunity for me to share what I have learned with you as well as introduce you to some of my friends, both new and old who are doing transformative work.With each episode of Dirt NC my goal is to make sure you walk away learning something new about land use. I promise to keep it simple and straight to the point.As always, I am grateful that you have chosen to share this time with me! If you have comments/questions/suggestions about Dirt NC or anything land use related you can connect with me on www.oakcitycre.com.Until next time, Thank you!
This episode features Gary, the brother of Jeff, who is currently a recipient of Waves Fairview Day Program. Jeff has been involved with Waves for the past 46 years and Gary shares his experience has been during this time. Listen to Gary shares several stories from their childhood and adult lives as well as the meaningful impact Waves has had on Jeff and on their family as a whole. Alongside Gary are our regular hosts, Waves CEO Staci Davis and Waves adult Johnny Sunshine. To highlight Gary's walk with Waves in Fairview, this episode is recorded at our Fairview Day Program and welcomes our other adult recipients: Hannah, Jimmy, Eric, Roger and Adam. Listen to the whole group ask Gary questions and share their own life updates! Follow along amazing stories as well as some powerful advice from Gary to those facing similar situations and wondering what the future of someone they know with IDD will look like. Prepare to smile, laugh and maybe even shed a tear when you listen to this episode. ________________________________________ To learn more about Waves go to: wavesinc.com For volunteer opportunities with Waves go to: https://wavesinc.com/volunteer/ To watch Waves of Awareness on Youtube go to: https://www.youtube.com/@Waves_of_Awareness To learn about Spread The Positive go to: https://spreadthepositive.net/
Once known around the world as Superman, Christopher Reeve became a true symbol of strength and resilience after a tragic accident in 1995 left him paralyzed from the neck down. Rather than retreat from the public eye, Reeve transformed his adversity into a powerful mission—advocating for spinal cord injury research and championing the rights of people with disabilities. Through the Christopher & Dana Reeve Foundation, he became a leading voice for change, working to improve access to medical care, technology, and independence for millions. His unwavering determination sparked national conversations about inclusion, accessibility, and what it truly means to be a hero. In this video, we reflect on Christopher Reeve's extraordinary journey—his advocacy, public speaking, directing, and continued impact long after his acting career. His famous words still echo: “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Reeve's story reminds us that disability isn't the end—it's the beginning of a new chapter filled with hope, purpose, and lasting legacy.
In this powerful episode of IDD Health Matters, Dr. Craig Escudé sits down with renowned disability advocate Liz Weintraub to explore what true health equity looks like for people with intellectual and developmental disabilities (IDD). Liz, a senior policy specialist at the Association of University Centers on Disabilities (AUCD), brings her lived experience and professional expertise to the conversation—sharing insights on advocacy, accessible healthcare, and the importance of plain language in medical settings. Liz discusses AUCD's national impact through 62 university-based centers across the U.S. and territories, her work on Capitol Hill, and key legislative priorities like ending subminimum wage (14c) and expanding home and community-based services. She also opens up about her own healthcare journey after a diabetes diagnosis, emphasizing the need for clear communication and respect for patient autonomy. Listeners will also learn about Tuesdays with Liz: Disability Policy for All, Liz's YouTube show that makes complex policy issues accessible to everyone. She shares how self-advocacy helped her transition out of institutional care and inspired her to empower others to do the same. Tune in to hear Liz's three essential tips for improving healthcare for people with IDD and why her message of "healthcare for all" is more important than ever.
Why would any leader choose to take on a transformation that requires rethinking how they lead, how their organization functions, and how they learn? In this episode, we dive deeper with Cliff Norman and David Williams, co-authors of Quality as an Organizational Strategy, exploring Chapter 11: “Getting Started.” They share powerful stories, practical steps, and the deep-rooted challenges leaders face when shifting from conventional methods to building true learning organizations grounded in Dr. Deming's philosophy. This conversation highlights why improvement cannot be delegated, why leadership transformation is essential, and how to begin the journey—with clarity, commitment, and courage. TRANSCRIPT 0:00:02.1 Andrew Stotz: My name is Andrew Stotz and I'll be your host as we dive deeper into the teachings of Dr. W. Edwards Deming. Today we are going to continue our conversation with Dave Williams and Cliff Norman about their book Quality as an Organizational Strategy. I found this book fascinating because I think it's addressing something where there's been a bit of a hole and that is how do we think about the strategy of our business? And so we already had our conversation in a prior episode about the overview of the book, but today we're going to be talking about specifically, now this is kind of funny because we're going to be talking about the back of the book and that is chapter 11, getting started. Dave, why don't you take it away? 0:00:53.3 Dave Williams: Well, thanks, Andrew. Thanks for having us back on the Deming podcast. So, as you mentioned, part of the way that the book is laid out is that it describes kind of the foundations that are behind quality as an organizational strategy and begins sort of with an introduction that explains a good bit about how Dr. Deming had this provocation of a need for leaders to transform the way that they approach leading organizations. And part of that was to move not just from process based improvement projects, but to start to think about major systems in the organization and to pursue quality as the overall strategy and create a continuous improvement organization or learning organization. And so the book lays some of the foundation behind the science of improvement or behind profound knowledge that underpin the thinking, walks through quality as an organizational strategy, as a method of five interdependent activities. Then at the end it comes back full circle to say, well, this is great, now you've learned about these theories and methods. But a natural question for any leader would be, how do I get started? And one of the first things that we talk about in that section actually is about why leaders would want to do this transformation. 0:02:30.9 Dave Williams: And this actually came from a conversation that Lloyd and Cliff and I had in 2020 where we were talking about getting on this journey of building the book. And we all kind of recognized that this was really, really hard work. And we were curious or we, we didn't have a good answer of what was our theory about why somebody would deviate from the way in which they work today and embark on a transformational change of the way that they approach leadership, the way that they approach organizations. And actually I ended up going on a journey of interviewing a whole host of leaders who had been influenced by Deming, who had been involved in improvement in healthcare, folks like Dr. Berwick and Paul Batalden and Brent James. I interviewed some folks in the UK and other places, like John Seddon, and asked them, oh and I should Blaine Godfrey, who had been the lead of the Durand Institute, and I posed the question, what causes somebody to want to embark on this change? And many people actually had a hard time articulating it. But the answer that emerged, or actually Blaine Godfrey was the one that kind of framed it the best, I think, for us, was a number of things. 0:03:57.7 Dave Williams: Sometimes it's something like a book like this comes out and people read it and it's interesting and new. Sometimes it's an event happens, a patient safety event or a major accident or something of which causes people to have to change or do something different. Sometimes it's a discouragement with a desire that you know you could do better, but you don't have methods or know how to. So there were a host of things that we listed, and those are some of a sample of them that might invite somebody to say, the way that we're working today is not getting us to the level that we want to. And now we want to embark on something different. And we might look to something like quality as an organizational strategy as a method for us to transform the way that we're working and build on the shoulders of Deming's philosophy and the science of improvement and do it differently. 0:04:56.0 Andrew Stotz: And when I look at the book, you guys are bringing together a lot of different stuff. It's not just a Deming book. It's Deming is a part of this, and that's fascinating. One of the questions I have is when we look at, let's say, a business owner, a business leader is looking for answers, as you said, maybe it's an event, maybe it's a discouragement, maybe it's a feeling like we can do better. Maybe it's just being beaten by competitors. They come to a point where they start looking for answers and they find some fantastic books, authors, ideas, consultants, all this and I think about whether that's Peter Drucker or whether that's the Lean movement or whether that's, let's say Taguchi or something like that is the teachings that you guys are talking about - and I'm going to specifically ask about the teachings of Dr. Deming. Is it more or is it more difficult or less difficult to implement than other books or styles or methods that someone's going to come across? 0:06:08.7 Cliff Norman: I have to quote one of my colleagues here who probably knew about more about Deming than anybody in API or all of us combined, that's Ron Moen, who did, I think it was 88 seminars, four-day seminars with Dr. Deming. Dr. Deming once told him, he said, Ron, I believe you've been to more of these and I've been to. And it's kind of a joke. He had a great sense of humor. But you know, Ron told me the problem with Deming is he's asking us to change. And there's all sorts of things out there that require the management and the leadership, they really don't have to do anything different. And there are several things out there. In fact, Philip Crosby, one of the three gurus during when they launched, he was more the evangelical and had a way of talking to management so that they understood it, which that was his contribution to all that. But when Six Sigma came up and black belts and all that, and Crosby looked at him and says, that's not going to change the system. He said, all you're doing is killing a bear for management, killing a bear for management, and then you'll get a black belt. 0:07:19.9 Cliff Norman: You know, And I thought, wow that's pretty profound. Because the management at that point doesn't have to do anything, just have the black belt ceremony. There's absolutely no change on their part. Where Deming, as Ron says, he's kind of a pain. You've got to learn about variation, you got to learn about Shewhart charts. You've got to be able to put together a family of measures for your organization. You've got to understand your organization's system. You need to understand psychology, you need to understand theory of knowledge and how people learn how they change. And nothing else out there puts that on leaders. And so that was a question that Dave was lending back to. Why would somebody do this to themselves? You know, why would they take on this whole extra thing to learn and all the rest of it. And for the people that I know that have made that, that bridge, the pure joy that they get and the rewards they get from people who are learning and that they're leading and that they're changing and they're able to go to other organizations and repeat this and call them up and say, thank you so much for helping me learn how to be a real leader. 0:08:35.8 Cliff Norman: I mean, that's the reward in it. But it requires a real change on the part of the leader. And I don't know of anything else, Andrew, that actually requires that kind of in depth change. And there was one of our leaders, Joe Balthazar, he had Jane and I do four years in a row with his leadership team, teach them the science of improvement. The same curriculum, same leaders, four years in a row. And the second year I was doing it, I said, don't we need... No, no, Cliff, I want you to do exactly what you did last year. He said, it takes years for people to understand this. And I thought, wow, this is unbelievable. But on the fourth year, the VP of sales walked up to me and he says, I think I figured it out. And I thought, wow. And it does it literally... Because you've got to depart from where you've been and start thinking about how you're going to change and let go of what's made you successful up to this point. And that's hard, that's hard for anybody to do. 0:09:47.2 Cliff Norman: And anybody's been through that four day seminar knows when they crossed that path that all of a sudden they had to say, you know what I've been doing, I can see where I've been, the problem and not the solution. And that's tough for us. That really is tough. And Deming says you have to give up that guilt trip. And once you understand the theory of variation, once you understand systems, once you understand psychology and theory of knowledge, it's time then for you to move on and let go of the guilt. I hope that makes sense. But that's the difficulty in this. 0:10:17.6 Andrew Stotz: It reminds me of two, it made me think about two things. I mean, I was just a 24 year old guy when I attended the seminars that I did, and they weren't even four day. I think they were two-day ones at Quality Enhancement Seminars in, what was it, George Washington, I think. But the point that I remember, as just a young guy who I was, I pretty much admired all these business leaders. And then to see Dr. Deming really nail em to the wall and say it's about you changing. And whether he was saying that directly or whether that he was implying that through the Red Bead experiment or other things, it's about you shaping the system. That really blew me away because I had already read some books and I was pretty excited. And then it also made me think about, let's say there's a really good book, I would say Good to Great by Jim Collins that highlights some things that you can do to succeed and make your business better. And you can just buy that book and hand it to your management team and go, hey, implement what you learned from this book. 0:11:20.8 Andrew Stotz: Whereas with the Deming book, it's like there's just so much more to it. So I guess the answer to this is it is more takes time. There's more thinking going on. And I think that's part of the whole point of what your book does, is to help us map it out. So why don't we go through and think about this and kind of maybe step by step through what is the starting point and how do we go? 0:11:45.4 Cliff Norman: Andrew, I just got to add to what you just said there and go back to Joe Balthazar at Hallmark Building Supplies. He shared with me that, and he's the one that said I want you to do these four year seminars dedicated Deming's idea of Profound knowledge. And he said, Cliff, the day I made it, I knew I'd made it. Is my son Joey spilled his milk. He's about three years old. And he said, I started to do my normal leap across the table and he said I was about mid air. And I thought, oh my, this is what they do. This is part of their system. This is common. And I'm treating this like it's special. And that was so profound for him. And when, when you move beyond the Shewhart chart and you see events in your life around you relative to the theory of variation, common and special cause variation at a deep way like that, that's the kind of transformation you want to see in a leader. And Joe will tell you he's forever grateful for Deming and everything he's learned, and I think that's the reward. But people need to be willing to go on that journey, as Dave was saying. 0:12:53.0 Andrew Stotz: So Dave, why don't you walk us through a little bit of what you guys are teaching in that chapter. 0:13:00.3 Dave Williams: Sure. Well, one of the next steps obviously is if somebody, if a leadership team thinks that they want to go on this journey, there's some considerations they got to think about. As we've already sort of alluded to or touched on, this is a leadership responsibility and a leadership change. And so there's got to be will amongst the leadership team in order to say we want to work together and work hard to do this work. That this is not something that, similar to Cliff's example of say, having black belts, that we can just hand it off, somebody else will do it, and we can just keep going about our business and hope. It's important that leaders spend time recognizing and thinking about the fact that this is going to involve them doing work, doing effort, changing the way that they think, changing the way that they practice. And I like to say it's good hard work. I mean it's going to be something that's deeply rewarding. But it does require them to have that will. And with will then it's going to come time and energy, right? They've got to make the space, they've got to create regular routines and opportunities for them to learn just in terms of content, learn in terms of practice or application and learn in the process of doing the improvement work and doing the change to the way that they work in the organization. 0:14:38.0 Dave Williams: So there's going to be a need to build in that ability. And then a third thing is to ask whether you think this is something that you can do on your own or whether it might be useful to have help. And help may be an internal, a consultant, but likely not to promote consulting it but, but there's a good chance that you're going to need somebody that has both experience in improvement and helping people do results-driven improvement as well as somebody who has experience doing system wide change through a lens like QOS. And, and the advantage of that often is it it gives you as a leadership team to focus in on your job of thinking and looking and learning and allow somebody else to be an external intervener, somebody who comes in and creates some of the support, some of the context, some of the ways that can make it easier for you to step back and look at your organization in a different way. And so many times those are some of the things that should be considered as teams working through it. Cliff, what would you add or improve upon. 0:16:07.3 Cliff Norman: The idea of external help. Deming was pretty black and white about that. I was kind of surprised. I went back and read one of his quotes. He said, "I should mention also the costly fallacy held by many people in management that a consultant must know all about a process in order to work on it. All evidence is exactly the contrary. Competent men in every position, from top management to the humblest worker know all there is to know about their work except how to improve it. Help towards improvement can come only from outside knowledge." And I was reflecting on that today with Jane who's been involved in this for 40 plus years also. I said Jane, when he said that, I think it was accurate because at that time she and I were going to Duran seminars. There's only two books out there with methods. One was Ishikawa's book on Guide to Quality Control. And the other was Feigenbaum's book. And then of course you had Duran's book on The Quality Handbook, which was a nice doorstop. But there wasn't that much knowledge about improvement. And the worst part where Deming was really getting to was there's very few people you'd run into that actually under the Shewhart methods and charts and understand the difference between special and common cause variation. 0:17:27.0 Cliff Norman: And so you had to bring that kind of knowledge in from the outside. And frankly, we've had people go off the rails here. You know, Dr. Deming in the teaching of statistics has identified analytic studies which is focused on looking at data over time and trying to understand that and simple methods and approaches and then what he calls enumerative statistics, which is use of T tests, F tests and all the rest of it, which assumes that under the IDD principle that data is independent and identically distributed. Well, if you have any special causes in the data set, it blows up both of those assumptions and the use of those methods doesn't offer any help in prediction. And as Dr. Deming often said, prediction is the problem. And then go back to Shewhart. And Shewhart said, things in nature are inherently stable, but man-made processes are inherently unstable. So when Dave and I first do a Shewhart chart for a client, we don't expect for it to be stable. We expect for to have special causes. And as Dr. Deming said and also Dr. Juran, that when you get a stable system, that in and of itself is an achievement, that means nobody's messing around with the system anymore. 0:18:43.0 Cliff Norman: And you see this in the simplest things, like in an office, somebody will walk in and they think that their body is the standard for what the internal temperature should be for that room. So then they walk up and they start tampering with the thermostat. And by the end of the day everybody's irritated because we've had so many bodies up there with their standard. Moving the funnel on us here, and just leaving it alone would probably all be better off. But you have to learn that. And I think that's what Dr. Deming was saying, is that that kind of knowledge is going to come from the outside. Now the good news is is that since he wrote that in 1986, we've got a lot of people out there and some of them are in organizations that do understand the Shewhart methods and can understand the difference between common and special cause variation. They do understand the difference between a new and analytic studies and statistics and they can be of help. So the Deming Institute has a room full of these people show up, but they're at their gatherings annually. So we're a lot further along than we were in 1986. 0:19:45.2 Andrew Stotz: Yeah. So let's go through that for just a second. Some considerations you've talked about. You know that it's a leadership change. Right. And you gotta ask yourself, are we ready to work on this? And you know, this is not a hands-off thing. The second thing you talked about is time and energy. Are we ready to make the space for this? We have to have regular meetings. You know, we've gotta really... There's some work involved here. And then the third part you've talked about is outside help. And you mentioned about this story of Joe Balthazar and how he asked you to do the same topic over and over for four years. And imagine if he was telling his team, let's meet and try to implement some of this stuff on our own. Everybody dig into a book and then let's try. It would be very difficult to make that kind of progress compared to bringing an outside person. Which also brings me to the last thing that you said, Cliff, which was the idea that Dr. Deming had mentioned, that you need an outside person to truly change something. Everybody's got the expertise on the inside. 0:20:44.5 Cliff Norman: I appreciate you summarizing that because my job and working with Joe and leadership team, I was meeting with him every month. But what the four years that Jane and I spent were the next levels of his leadership. You know, it wasn't the leadership team. And I'm glad you brought that up because it was the very next level that he wanted exposed to this and the VP of sales that came in, he was new, so he had to be part of this group because he wasn't there originally. And so there was that ongoing... He wanted that next generation that was going to take over for him and the others to really understand this. So I'm glad you summarized that for me to help. 0:21:30.5 Andrew Stotz: Yeah. And I think one of the starting points too, I mean, the body of work, not just this book, but the other books that you guys have been involved in and produced provide a lot of the starting points for this. So there's a lot there. Dave, where do we go after these considerations? And the people say, okay, yeah, leadership says, we want to make this change. We're ready to make some time for it. We're willing to get outside support and help. Where do we go next. 0:21:57.7 Dave Williams: Right. Well, one thing that we typically invite a leadership team to do is to take kind of a self assessment of where they sort of see their baseline in relation to the methods and activities of QOS. So in chapter one of the book, there's actually a table that is 10 different categories. And then each leader takes it independently and they rate their level of agreement with different definitions from 0 to 10. 0 being this really isn't present, and 10 is, I'm very, very far along on this journey that in the book that's out now, there's a summarized table, it's on a page. But actually in the QOS field guide that we're working on publishing this year, there's a much more detailed version that we use in practice that has deeper definitions, but basically it works its way through purpose and leadership and systems thinking and measurement and all the things that are tied into QOS and what... And as I mentioned, we have each individual member of the leadership team take it independently and then we bring those scores together to learn together. 0:23:32.5 Dave Williams: And there's different ways in which you can display it. In the book, we show an example of a leadership team's scatter plot where it shows the rating and then it also shows the standard deviation amongst that exists between the leadership team. It's very, very common for leaders to not be in agreement in terms of their score in each of the different areas. You know what I said, It's a 0 to 10 scale. Typically, in my experience using the tool, people tend to be between a 2 and a 6 and hovering around a 2 or a 4. But it sort of looks like a buckshot or shotgun blast where there's a very... If you were to put dots where everybody scores, where there's variation that exists. And that's good because it's useful for the team to pause and think about why they assess the organization the way that they did. Looking at it through this new lens, where are the places that there's agreement and also where are the places that there's variation? And that helps them to be able to think about the fact that through this process, they're likely to both improve their assessment of the organization, but also increase their agreement about where they are and what they need to do to move forward and what they need to do to improve. 0:25:05.2 Dave Williams: And so that's a useful starting point, gets everybody kind of on the same page, and it's something that we can use at intervals as one of the ways to continually come back and evaluate progress towards the destination of pursuing quality as an organizational strategy. 0:25:23.7 Andrew Stotz: Yeah, I mean, I imagine that self assessment, it helps you too when you work with companies to be able to really understand, okay, here are starting point with this company is really, they just really don't know much about all of this stuff, whereas you'll have some other clients that basically, wow, okay, there's a lot of knowledge here about it, but how's the implementation and all that? So are we ready to change? Are we prepared to devote the time and energy? Are we going to get outside help? And where are we now? What's our starting point that's great to help us understand exactly how you step through it. What comes next? 0:26:03.5 Cliff Norman: Well, in that very first milestone, in that table, is it table three, Dave? Anyway, the very first milestone is to establish formal improvement efforts. And the reason for that is that unless people experience what it takes to develop, test and implement changes in the organizations, they really can't appreciate the structure that comes with quality as an organizational strategy. Because it's very difficult for many organizations to launch three or four improvement efforts and then bring them to fruition. And there's all sorts of stuff that happens. And then you find out very quickly whether you have managers or leaders, and organizations they've brought me in, they say, let's do some leadership training. I said, no, let's just do some improvement and then we'll find out if we have leaders or not. And one group, I won't mention who it was, but they had five people on their leadership team and they had to replace two of them because they found out they couldn't actually manage an improvement effort. And then the CEO was wondering how they actually manage their organization, which they weren't either. And so it's a rather, it's an important test in the front. 0:27:22.2 Cliff Norman: But as Dr. Juran says, it's real important to develop the habit of improvement. And if you don't know what that is, if you've never experienced it, then it's hard to say to people, gee, I need a purpose that aligns my improvement efforts. I need to understand my system so I know where those improvements are going on. I need to build an information system, get information from customers outside, people inside. I need to put together a strategic plan that actually makes improvements on purpose. That's a lot of work. And once you understand how complicated it can get in terms of just doing three or four improvement efforts and then all of a sudden you got a portfolio of 30 to do your strategic plan. Now that needs some structure, that needs some guidance and all the rest of it. But I'll just go back one step further. My own journey. I was sent by Halliburton at Otis Engineering to go see Dr. Deming 1982 in February. And coming back, I had an audience with the president of our organization, Purvis Thrash. And I went on and on about Dr. Deming. He said, Cliff, you know what I'd like to have? I said, what's up, Mr. Thrash? 0:28:27.5 Cliff Norman: He says, if you'll take this 50 million dollar raw material problem and solve this for me, I'll be a happy man and I'll give you all the quality you want. But go take care of that problem for me first and then come back to me and talk about Deming and Juran and anything else you want to talk about. So I put together four or five people and over about three months we solved his 50 million dollar raw material problem. And then he had a meeting of all executives and I was sitting with the managers in the back row and he called me to the front and he says, Cliff, will you sign this card right here? And I says, well Mr. Thrash, what is this? He says, well, I'm giving you authority to sign $50,000 anytime you need it to get all the quality we can stand here at Otis Engineering. One of the vice presidents said, well, I don't have that authority. He said, you didn't save me $50 million. You know, but once that happens, Andrew, once you do that, then you've got people that are willing to help you. And then once that takes place, I can't tell you how important, it allowed me then to bring in Lloyd Provost to help me. 0:29:36.2 Cliff Norman: And they weren't about to pay out money. They didn't like consultants, in fact, they were anti-consultant. But you saved us $50 million. I gave you $50,000. And Lloyd doesn't make that much. So get him in here, do whatever you need to go do. And I just think it's so critical that we have that demonstration project that people understand at the leadership level what we're talking about when we talk about design and redesign of the system. 0:30:00.0 Andrew Stotz: Yeah. I mean, I appreciate in the book you're talking about this concept. I'm not going to call it quick wins, but the idea is we need to get results. You know, this isn't just about talking about stuff so that's one thing that as you just illustrated, that's one point. The second thing you mentioned, is this person a leader or a manager? You know, and I think for the listeners or viewers out there, they're probably... When they heard you say that, they're probably thinking. Okay, wait a minute. Are my team managers or leaders? How do I know? What would you say? What differentiates the two? 0:30:37.2 Cliff Norman: I was fortunate to hang around Dr. Maccabee, as Deming did, and I asked Dr. Maccabee that question. He said, Cliff it's actually pretty easy. He said leaders have followers, and if you have followers, you can be anywhere in the organization, be a leader, but if you don't have followers, you're not a leader. You might be a manager with authority. You're not a leader. 0:31:02.7 Andrew Stotz: Can I ask a little bit more on that? So I'm thinking about my own business, which is a coffee factory, and I have people that are running the business, but I also have people that are running departments like the roasting department. And that area when they're overseeing this and they're doing a very good job and they're keeping things up and all that. How do I understand in a sense you could say, are they followers? Well, not really. They're people working for them and they have a good time and so do I view that person as not necessarily a leader, but more of a manager, or how do I look at it in my own company? 0:31:35.5 Cliff Norman: It could be a manager, which is essential to the organization. And that's another big difference. You see, the leader can't delegate their relationship with the people who are followers. You can't do that any more than a teacher can dedicate her class to a substitute teacher. Anybody that's ever watched that knows that chaos is getting ready to break out here because that teacher has a relationship with those students. She knows them all in a big way. And when the substitute comes in is game time in most classrooms and so forth, the managers have skills and things that they're applying and they can actually delegate those. Like when I was a foreman, I could have somebody come in and take over my department and I say assign all my people tomorrow. And they could do that. Now, in terms of the people that I was leading that saw me as a leader in that department, they didn't have that relationship. 0:32:30.2 Cliff Norman: But management or skills and necessary things to make the organization run like you're talking about, the coffee is not going to get out the door unless I have people with subject matter knowledge and competent managers to make sure that the T's are getting crossed, the I's dotted and the rest of it. But the leadership of the organization that has followers, that's a whole different person. And I think it's important. That could be anywhere in the organization. Like I had at Halliburton, I had a VP of engineering. Everybody went to him, everybody. He had 110 patents. You know, he built that system. He built the whole organization. So the CEO did not have the followers that the VP of engineering had. And it was well earned. It's always earned, too. 0:33:16.7 Andrew Stotz: Yeah. Okay, that's great. Leaders have followers. Leaders cannot delegate their authority. They have a different relationship. 0:33:24.0 Cliff Norman: They can't delegate the relationship. 0:33:25.8 Andrew Stotz: The relationship. Okay. 0:33:27.4 Cliff Norman: Yeah. Very important. 0:33:34.3 Andrew Stotz: So now let's go back to what, where we were. So we were saying some of the considerations. Are we ready to change? Are we prepared to devote the time and energy? Are we ready to get outside help and where are we now? And that self assessment that you talked about helps us to understand what's our starting point. I always tell a joke with my students about this when I talk about. I'd say, imagine you go to London and you're going to go visit your friend and you call your friend up, you say, I've arrived and I'm calling from a phone booth and just tell me how to get there. And the friend says, well, where are you? And you say, I'm not really sure. Well, do you see anything around you? Yeah, well, there's lots of buildings, but I don't really, you know. Well, do you see any names of any streets? No, I don't really see anything. But just tell me how to get there. There's something missing. If we don't know where we are, it's very difficult to get to where we're going. So now we understand where we are. We got that scatter plot that you guys have that you've talked about. Dave, where do we go next? 0:34:26.6 Dave Williams: Well, so Cliff already mentioned one of the fundamentals. And sometimes I think this is something that people struggle with because they want to jump into something new. But one of the best starting points is to focus in on improvement. And there's a number of different reasons for that. So one is that I don't know about you all, but in my experience, if I ask people, like, hey, I want to create some improvement projects and get started on improvement, I always tell people, like, if you remember the old Stephen Covey exercise where he put the rocks and the stones and the sand into a jar and poured water. And like you would do it in different orders. And I'm fascinated that people will stare at the big rocks or the things that are right in front of them, or the things that are on their agenda, or the things that are part of their strategy. And then they'll look to the side and grab some rare event or some extra thing that isn't related to that, but they've always wanted to work on. And where we try to focus people's attention is one, what are you already working on? Can you look through your and ask around, what are the things that are currently in play, projects that exist? And sometimes we won't ask, what improvement projects do you have? Because if you do that, you get a short list. 0:35:51.4 Dave Williams: Those are the things that people defined as an improvement effort, or maybe use some kind of framing to decide it was an improvement project. It may be better to in the beginning of the book, in the first chapter, we talk about different ways that you improve. And there's designing and redesigning a process. There's designing and redesigning a service or a product. There's changing a whole system. And so it can be useful to say, well, what are we doing in these areas? And that may actually create a bigger list of the various things where people are working on something that's about change to the system that may lend itself to be better activated through firing it up as an improvement project. And then, of course, there's a good chance that any organization, especially if they've done some kind of strategic planning, have some strategic objectives or some strategic priorities which they've committed to or already said, these are the things we're going to work on. So kind of crowdsourcing or bringing those together helps us to potentially find the early portfolio of projects without having to look much further, without having to say, what else do you want to work on. 0:37:07.0 Dave Williams: And then if we've got that, if we've got that list, a second thing that we can do is invite people to use the three questions of the model for improvement and reflect on can you answer these three questions? Do you know what you're trying to accomplish? Do you know how a change will result in improvement? Do you know what changes you'll make? What's your theory about how you'll get to improvement? And so having a list of the things that are already present or existing may be one first step. Another second step in the firing up a portfolio of improvement projects is asking the three questions for the model for improvement. And then a third one, if it's an active project is we have a project progress scale that you might use that can help you gauge. So I've got a project where is it on its journey towards achieving its aim or getting results? Those three can help us to sort of get a sense of the work that is at hand and that has already been sort of started in some fashion that is already in progress and maybe to get a sense of the level of definition and the progress that exists. 0:38:22.3 Dave Williams: They may not be the right projects, but that's a good place to start before trying to create new ones. And I'll hand it to you, Andrew. 0:38:30.4 Andrew Stotz: I find that interesting. Both the story that you told Cliff about fix my raw material problem and then, Dave, what you're talking about is as you talk in the book, focus first on improvement. What are we already working on? What's an improvement project we've got? What's a problem we've got? Because a lot of times, let's say in the teachings of Dr. Deming, it's like, no, get your mind right, read this stuff, read this, figure this out, think about this, go to a seminar, talk to other people before you do anything. I feel like that is oftentimes where people get caught is they get caught up in, I need a year to think about this. And can you explain a little bit more about why once we've done our self assessment and we're ready to go, that you focus on improvement rather than the thinking process? 0:39:21.7 Dave Williams: Well, because we want to... Well, one, we know that in order to get results or to get a different result than what we want, we got to change the system that we got. Right. So in order to do that, we've got to do improvement. The other thing is that there's already energy that's being expended here. 0:39:41.4 Andrew Stotz: That's a good point. 0:39:42.7 Dave Williams: The risk that often I find people run into is that they then add other projects that are not strategic into that bucket and take up more energy. I'll tell you an example. I was working with the health system here in the States and we crowdsource just the things that they were calling improvement projects. The health system had 25 active teams that were just the ones that were called out as improvement projects. When we looked at those 25 teams, the vast majority of them were not actually... They had been meeting for months and doing things for quite some time, but they actually weren't doing any changes and, or they've been testing changes for quite some time. So, now just this exercise alone by only asking, what improvement projects do you have? You realize you've got 25 teams that have been resourced or are spending energy or going to meetings or focused on something. They may not be the strategic thing that matters, but that's irrelevant right now. We just know that we already have invested some interest here. The second thing is these folks have been on this journey for quite some time and are not making progress. 0:41:01.7 Dave Williams: So that tells me something about maybe the way that they framed it. Did they charter it well? Did they have the right people in the room or the right team? Did they have the right tools and methods to be able to break down the problem and then figure out what to test and learn? So there may be some difficulty... 0:41:19.4 Andrew Stotz: Or did they even just dissipate their efforts across 25 projects too? Right in their resources, yeah. 0:41:26.1 Dave Williams: Yeah. Or there are overlaps? So there's a number of different factors. There's actually a paper that was published by a health system in the United Kingdom, and it was really interesting. They spent a lot of attention on generating will through training and getting people in the classroom and teaching them about improvement methods. And they fired up all this energy. They had a massive explosion of the number of projects that were started or where somebody went into their software. They had a software platform. Anybody could go and start a project. Well, something like 50% of those projects never actually got to PDSA testing where they changed anything. And then there were a slew of them that were stuck in PDSA testing but never saw any movement in their process measures or their outcome measures. And only a small number actually progressed in achieving their aim. And I asked the Chief Quality Officer about this, and and he admittedly said that it was very exciting that we we're generating will and getting things going, but that alone was only getting them to maybe some early design and some thinking, but they weren't getting them to results. 0:42:34.8 Dave Williams: And I said, well, what about the ones that were getting results? And he said, well, those are actually ones where we've got an improvement advisor who's got some skills and ability and improvement. There are things that are resourced, there are things that were prioritized. And man, when we did all those things, they moved from planning and organizing and thinking to testing changes and moving in a direction of goodness and getting at least results in their process measures, if not their outcome measures. And so in my mind, I was like, I appreciate you're trying to build this sort of culture, but it felt like a lot of burnt energy at the front end with all these teams getting into training and firing up their software and more energy might have been strategic in copying what was getting to results. And I think that's part of what we're trying to get to, is helping people learn. You've got if you don't have a method to figure out strategic projects, let's look at the ones you got. How are they going? Where are people at? And how effective is the capability that you have within your system right now? And the leaders want to be part of that, and they can learn within that to go, oh, wow, this is our current state. 0:43:47.2 Dave Williams: And so maybe we're going to agree to continue on with these projects. Maybe we're going to sunset some of them, but we're going to learn together about how do we get better at getting better, and how do we learn how to move projects forward and not to have them take two years. Let's try to get them down to four or six months, whether that's through scope or execution. But let's get better at getting better. And then as we're building... Developing the early activities of QOS, we'll eventually get to a point where we'll also be able to identify more strategic projects that are going to move us towards our aim or towards our purpose better. And this will help us as we're trying to build the capability to get there. 0:44:32.7 Cliff Norman: You know, Andrew, early on, when Dave went down this path, he said that we got to make sure that somebody's working on improvement. They're actually making changes. And Jane and I were working with a group, and the CEO said they've been meeting a long time. Could you down there and see what they're doing? Because nothing's happening. And we started looking through their agendas and they had everything well documented, and it was all about getting ready to get ready. And then they'd assign the dessert. Who's going to bring the dessert to the next meeting. And Jane looked at him and says this reminds me of something, Cliff. I said, what's that? Can I share my screen? 0:45:10.9 Andrew Stotz: Yeah. Yep, go ahead. 0:45:13.7 Cliff Norman: I may send this to. You may know about it, but this is Dr. Deming's Diary of a Cat. And everyday... 0:45:20.6 Andrew Stotz: It hasn't come up yet. Hold on one second. Hopefully you've got permission now. 0:45:28.6 Cliff Norman: Let me go back and check here. 0:45:33.9 Andrew Stotz: Okay. It looks like it's coming up. One second. 0:45:38.4 Cliff Norman: It said every day is today. There's no theory days of the week. But today I got up some food in a bowl, it was great. Slept some too. Play with yarn, got some food in a bowl, had a good nap, slept, food, yarn, fun. Play with a shoelace. There's a big change right there. Went from yarn to a shoelace. Some people call that a job shop. And ate, slept, had a good day, slept, ate some food, yarn, so forth. So, and the team meeting looked just like that. But there's really no changes going on relative to improvement. So Dr. Deming would often share this into four days seminar to make sure that we weren't involved in the Diary of the Cat, but we were actually doing something useful in terms of making changes in the organization. 0:46:24.4 Andrew Stotz: That's a great one. And it helps us to understand that we could be busy all day long and not improve anything. 0:46:31.8 Cliff Norman: You know, or actually confuse that with improvement. In fact, we have an operational API that my team, we were embarrassed in our first, wait a second, our first improvement guide we wrote. And Dr. Adamir Pente, who's a professor at the university in Brazil, he sent us a note and he said, I know you guys and he said you're real big on operational definitions, but you've written this book on improvement and nowhere have you, you've defined what you mean by improvement. And then he put together a three part definition that there's a design and redesign system, there's system measures and the change is sustainable and lasting and so we put that definition in the second edition. But I was confronted at a university, I won't mention which one it was, but they had 30 Keystone projects for a advanced degree program for nursing and they were convinced they were doing improvement. And when I had them apply that definition, they came up out of the thirty. They only could find two projects out of the 30 where they were actually designing and redesigning the system, which, that's the first thing Dave said are we designing and redesigning and making real changes? And people think just showing up and going through motions and all the rest of it is improvement. No, it means... 0:48:07.8 Dave Williams: Looks like we've lost... 0:48:11.9 Andrew Stotz: We lost you at the last, the last statement you just made. People are going through all this stuff and thinking that they're improving, but they're... 0:48:22.8 Cliff Norman: Yeah, it's showing up and going through motions and you know, having the meetings and making sure we assign who's bringing dessert. But we're not really designing and changing the system. We're not getting measurable changes of improvement. In other words, we haven't tracked the data over time and we can't say that the changes that we've made are going to in fact be sustainable because we haven't known what we've done to the system to deserve a sustainable change. 0:48:51.4 Andrew Stotz: By the way, what a buzzword these days, sustainability, sustainable and all that. And you just think do people really think about how we're building something that's really lasting and sustainable? 0:49:04.8 Cliff Norman: Well, we have a checklist and actually Jane designed it for the first edition and it literally lays out what changes did you make, which processes did you change, what's going to change in the documentation, whose role statements have been changed in the organization because of this change. And once all that's answered on that checklist, which is in the book, then we can... But we're pretty certain that we've created the structure to make it easy for people to do the right thing and hard to do the wrong thing. But unless that structure's changed, probably not much going to happen. 0:49:40.8 Andrew Stotz: Just for the sake of time, because I think we want to wrap up in just a bit. But there's so many stuff, so much stuff that we've been through. But I know there's even more in this chapter, but how would you start to bring this together for the person who is a leader, himself or herself, and they're listening to this and they're thinking, okay, I'm ready to make a change and I'm prepared to devote the time and energy because I see the outcome and I'm open to help, whether that's through the book and other books, whether that's through a consultant, whatever that is. And I can even do a self assessment to some extent and know where our level is, which is very low. We don't know much about this type of stuff and that type of thing. We talked about the first focus on improvement. How do they pull this all together and start moving on it? 0:50:35.0 Dave Williams: There's three things that follow the self assessment. The first one is this focus on doing improvement work and setting up a portfolio of projects. And we just kind of talked about many of the different methods that go into that. And like I said, sometimes that when you say that out loud, leaders don't initially get excited by it because they think they have it. But actually it's a powerful opportunity for you to learn about what's currently going on in the organization and about where this opportunity is to reduce a lot of the noise and a lot of the friction that's getting in the way from you getting to results. The second thing that often happens in parallel is that the leaders need to build a learning system where they're going to be able to learn together both about these projects and what these projects are telling them about their organization, about their culture, about their people, and about their capacity to get results, but also that they can start to be learning about the science of improvement and profound knowledge and the activities of QOS that are going to be part of what they're going to work on developing over the course of the first year or two. 0:51:50.6 Dave Williams: And so that typically is, that's making that space and energy. It's a blend of book learning and application and practical. Trying and looking at things within the organization. It's a very applied approach, but it's an ongoing piece of their discovery. And I often argue that this is a real opportunity for leadership because they're going to be able to see their organization in a way that they haven't seen it before. And when we talk about profound knowledge, they're going to gain this profound understanding and expertise about what they're charged with and what they own and what they want to change in a way that they haven't been able to have it before. And so it's a hard work, but rewarding work. And then third is that typically where the, where we invite people to start is to focus in on the first activity, which is to develop or establish or develop their purpose. When this work was initially framed, not everybody was as... Not everybody had a mission, vision and value statement or a purpose statement that wasn't as common, but today people do. But the difference here, and you'll see this in the chapter on purpose, is that organizations that are pursuing quality as an organizational strategy are organizations that are systems that are built to constantly be trying to match a need that exists out in the world. 0:53:34.7 Dave Williams: And so often a learning for people is to step back and have to reflect on, well, what is the need in which we are creating these products and services to match? And if we're creating these things to match the need, how do we understand what's important, what are the quality characteristics that matter? And then how do we define what our mission is in that context? And being able to say, here's why we exist and the need that we're trying to serve, and in what way? And how do we set a vision for where we want to get into the future and what are the tenants or the practical values that exist in our organization, that we want to define how we work together in terms of building in that way. And so purpose is a big focus. It's that clarity of the need, the clarity of the quality characteristics that it takes to match that need. Understanding what are the products and services that we have. I know that sounds a little trivial, but you'd be stunned how hard it is, especially in service organizations, for people to actually describe what it is that they do, what are the actual services. 0:54:54.3 Dave Williams: They might have the name of the service or the class or the whatever, but to actually say this is what we deliver, and then really think about how do I use this as our organization's sort of North Star, our aim, so that everything else that follows is going to be about building a system that produces the results that we want and produces the services that match that need. So going forward, that's going to be very, very important in instructing the direction and instructing the way in which we're going to work as a community of professional people together. 0:55:30.8 Andrew Stotz: So after self assessment, we're talking about focusing on improvement. We're talking about building a learning system, and we're talking about revisiting or establishing or developing our purpose? 0:55:43.3 Cliff Norman: Yeah, I'll just add to what you just said there, Andrew. There's three basic things that have to happen when we start working. Number one is create the habit of improvement. Start improvement right away. Second thing, Dave just went through some detail on building a system of improvement. And Dave called that a learning system, which I thought was interesting because that's what Dr. Maccabee called it when he saw the five activities. Said, these are really methods for building a learning organization. And he said, I've never really seen them before, but this is what will come out of this, which is the essence of what you want. You want people continually learning, as Dr. Deming said, so they can continually improve. But the third thing that has to happen is we have to develop internal capability for them to carry this on, because we're not going to be around with them. We've never advertised. We don't advertise for clients, and we only get word of mouth. And we're only in there to do those three things, get them started on the habit of improvement, start building the system improvement so they can take it over. 0:56:43.4 Cliff Norman: And the third thing, start developing internal capability so they can continue it on into the future. So those three things basically take off on day one. And depending on the organization, I think this is critical. Dave, you asked this question the other day, if the context is such they've got things in front of them are so bad and so challenging that they just need to work on improvement. That's where we're going to be focused. But now if they can chew gum and walk at the same time, we're going to start building the system of improvement. And the first people I want on those initial teams, I want people on there who are going to be future improvement advisors. And more importantly, they perceive them as future leaders in the organization. I don't want a cadre of a whole bunch of improvement advisors. I want leaders in the future who actually understand the science of improvement, understand these methods, so when they go to the next department, the next organization, they can carry this on. So those three things start improving, start building a system of improvement. And the third thing, start developing internal capability. Those have got to take off almost simultaneously, depending on the situation, of course. 0:57:49.8 Andrew Stotz: Well, on that note, that's quite a discussion. I'm so happy that we can have this to go in a little bit deeper into the work that you guys have done. Again, the book is Quality As an Organizational Strategy. I got mine on Amazon and it sent it to me. But I wonder if you have any last words that you'd like to share about what we've talked about today in relation to getting started. 0:58:18.3 Cliff Norman: So, Dave, why don't you talk a little bit about. Because I think this is critical. We've just finished Andrew, the book that's going to be for the people who actually have to build this system. So Dave, just say a few things about that if you would, because you. 0:58:32.0 Dave Williams: About the field guide? 0:58:33.8 Cliff Norman: Yeah. 0:58:35.5 Dave Williams: Yeah. Well, so when this body of work was first created, there was the content of which you see in this book. And then there were also a lot of exercises and methods and applications and examples that existed as well. And it was a pretty thick binder. We have created two volumes. One, the book that you have, which is the description of the theory and the method and gives you some of the tools. And we're now in the process of pulling together what we call the QOS Field Guide, which is a guide that is supporting people that are going down this journey. It follows the same structure as the book, with the exception of the, the Getting started chapter that we had at the end is now at the beginning. And it walks through in great detail various ways in which you leaders and practitioners can approach getting started and building the capacity and then working through each of the activities. And it's equal in size, I mean, it's about the same thickness. But what we tried to do is to give people really pragmatic things to do. 1:00:01.1 Dave Williams: So there are exercises where people are simulating an idea or a concept or a particular piece. There are what we call QOS applications, which are where you're actually taking the theory or the method and applying it to your own organization. There are case studies and things that have been built that might allow you to practice. There's wonderful examples of just about everything from all, from people that we have worked with over the years across multiple different fields, from my background in emergency services and healthcare to education to manufacturing to elevator companies, all kinds of great stuff. And so that will be helpful as people are trying to think about pursuing this journey and working through that first phase of developing QOS and moving into using it. And we're in the stages of having it done to be available later this year. 1:01:08.6 Andrew Stotz: Exciting. 1:01:09.2 Cliff Norman: We've tried to make it useful, Andrew, that the people have to stay overnight with the management and actually get something done and build it without being run off. That everything is there for them to make sure that they make it successfully. That's the thing we kept in mind as we kept writing this second volume. 1:01:25.2 Andrew Stotz: Yeah, I mean, I would say my experience with your guys's writing is that it's applicable. 1:01:34.1 Dave Williams: Well, Andrew, one thing I was going to add on you mentioned a lot of different examples. There are a lot of books in which people tell you a theory, but they don't tell you how to do it. Or they tell you about their own experience, but they don't actually convey the theory. The Quality as an Organizational Strategy book is laying out the theory and the methods of this approach built on the foundations of the science of improvement and profound knowledge and the Deming philosophy. The QOS Field Guide adds to that by giving you the methods and the tools and the things. It doesn't mean that that by itself you can't just go through like it's some kind of self guided tour and all of a sudden magic happens. There's a lot of work and learning and things that have to go into going through that process. But between these two volumes, a leadership team has the tools and methods that put them in position to be able to make this journey. 1:02:41.4 Andrew Stotz: Right. Well, let's wrap it up there. On behalf of everyone, I appreciate Dave and Cliff. All that you're doing and you're sharing with us and taking the time to do that. So from everyone at the Deming Institute, I want to thank you again for joining this and bringing your discussion on these topics. And for listeners, remember to go to deming.org to continue your journey. And you can find this book, Quality as an Organizational Strategy at Amazon and other booksellers. Are there even booksellers these days? I don't even know. They're mainly online these days. So this is your host, Andrew Stotz, and I'm going to leave you with one of my favorite quotes from Dr. Deming, which is "people are entitled to joy in work."
In this powerful episode of IDD Health Matters, Dr. Craig Escudé sits down with renowned disability advocate Liz Weintraub to explore what true health equity looks like for people with intellectual and developmental disabilities (IDD). Liz, a senior policy specialist at the Association of University Centers on Disabilities (AUCD), brings her lived experience and professional expertise to the conversation—sharing insights on advocacy, accessible healthcare, and the importance of plain language in medical settings. Liz discusses AUCD's national impact through 62 university-based centers across the U.S. and territories, her work on Capitol Hill, and key legislative priorities like ending subminimum wage (14c) and expanding home and community-based services. She also opens up about her own healthcare journey after a diabetes diagnosis, emphasizing the need for clear communication and respect for patient autonomy. Listeners will also learn about Tuesdays with Liz: Disability Policy for All, Liz's YouTube show that makes complex policy issues accessible to everyone. She shares how self-advocacy helped her transition out of institutional care and inspired her to empower others to do the same. Tune in to hear Liz's three essential tips for improving healthcare for people with IDD and why her message of "healthcare for all" is more important than ever.
In this heartfelt and honest episode of the Friends for Life Podcast, Tony Stuart returns to share what it's really like to juggle the responsibilities of being both a dedicated Direct Support Professional (DSP) and a parent. From moments of overwhelming frustration to unexpected joy, Tony gets real about the challenges many DSPs face—especially those who are single parents or working long hours to make ends meet. He opens up about the emotional toll of trying to be present at work while worrying about sick kids at home, the guilt that can creep in, and how essential it is to remember your why—both for your family and for those you support. But it's not all struggle—Tony also shares beautiful stories of bringing his children along to events and how DSP work can actually teach valuable life lessons to the next generation. Whether you're a parent working in the field, an agency leader, or someone considering a career in direct support, this episode is a must-watch. You'll walk away with inspiration, insight, and a deeper appreciation for the unsung heroes who keep showing up, day after day.
In this week's episode, John and Cynthia are joined by Janet Capetty to discuss the impact of wellness in the IDD community. Resources mentioned in the episode: To learn more about Club Wellness Training, visit clubwellnesstraining.com Episode Transcript Want to share stories with us? Email us at Quillopod@myquillo.com To learn more about Quillo Connect visit MyQuillo.com
It's Alcohol Awareness Month. Our guests from the Mississippi Department of Revue, their Director of Public Relations and Communications, Tina Richardson and Riley Nelson, Chief of Enforcement Mississippi Alcoholic Beverage Control. We're talking about liquor sales, laws, taxes, and vendor questions. Oh and it's primary election day!!I love a good website and DOR has one. dor.mo.gov from there you can click on ABC, titles and tags, cannabis – whatever you want answers about.Are you ready to vote today? If not, I've got some assistance for you. Yallvote.ms is the short cut to get tons of election information. They've got a “My Election Day” button to click to see where you vote, see a sample ballot, and see who your current office holders are. If you aren't registered to vote . . . get yourself registered before May 5th so you CAN vote in the General Municipal Election, June 1st.Can alcoholic beverages be sold on election day? According to the FAQ page of the Department of Revenue's ABC section: Sales of alcoholic beverages are not limited or restricted on election days. Local governments cannot restrict the sale of alcoholic beverages by package stores or on-premises ABC permittees on election days. Beer sales on election days may be restricted by a local ordinance.Office of Consumer Services can provide information about services offered by DMH and DMH certified community service providers. Information is available 24 hours a day, 7 days a week by calling the DMH Helpline at 1-877-210-8513. Receive information about mental health, IDD, and substance abuse services available in your area. Hosted on Acast. See acast.com/privacy for more information.
In this inspiring episode of IDD Health Matters, Dr. Craig Escudé is joined by Dr. Ben Warner, a healthcare professional whose unique journey spans from dental practice to medical school—all fueled by a lifelong desire to serve those with the greatest needs. Dr. Warner shares how his early experiences volunteering in hospitals sparked a deep commitment to healthcare and how that commitment evolved from dentistry to medicine. His story is one of resilience, family support, and a calling to provide equitable, compassionate care for individuals with intellectual and developmental disabilities (IDD). Now a board member of the American Academy of Developmental Medicine & Dentistry (AADMD), Dr. Warner discusses his role in advancing the mission of healthcare equity, and how his work has consistently centered around improving access and quality of care for people with complex health needs. Tune in to hear Dr. Warner's three key takeaways for improving healthcare: recognizing that we are all patients, prioritizing care for those with the greatest needs, and embracing the importance of service and cooperation in creating a better healthcare system for all. Learn more about AADMD at aadmd.org and explore tools to enhance health equity at replacingrisk.com. This podcast is a joint production between Friends for Life and IntellectAbility. Visit friendsforliferc.com to explore career opportunities in the IDD field.
In this inspiring episode of IDD Health Matters, Dr. Craig Escudé is joined by Dr. Ben Warner, a healthcare professional whose unique journey spans from dental practice to medical school—all fueled by a lifelong desire to serve those with the greatest needs. Dr. Warner shares how his early experiences volunteering in hospitals sparked a deep commitment to healthcare and how that commitment evolved from dentistry to medicine. His story is one of resilience, family support, and a calling to provide equitable, compassionate care for individuals with intellectual and developmental disabilities (IDD). Now a board member of the American Academy of Developmental Medicine & Dentistry (AADMD), Dr. Warner discusses his role in advancing the mission of healthcare equity, and how his work has consistently centered around improving access and quality of care for people with complex health needs. Tune in to hear Dr. Warner's three key takeaways for improving healthcare: recognizing that we are all patients, prioritizing care for those with the greatest needs, and embracing the importance of service and cooperation in creating a better healthcare system for all. Learn more about AADMD at aadmd.org and explore tools to enhance health equity at replacingrisk.com. This podcast is a joint production between Friends for Life and IntellectAbility. Visit friendsforliferc.com to explore career opportunities in the IDD field.
In this episode of the Friends for Life Podcast, Tony Stewart breaks down everything you need to know about the essential paperwork involved in starting and running an agency provider business in the DD (Developmental Disabilities) world. From policies and procedures to tax documentation, injury reports, training logs, communication methods, and even thank-you cards for your team — Tony dives deep into the practical, real-world knowledge that every provider should know. Whether you're just getting started or looking to level up your operations, this video is packed with valuable tips to help you stay organized, compliant, and ready for success.
Laurie Graham and Victoria White discuss the inclusion of adults with intellectual and developmental disabilities (IDD) in the church. Victoria, an experienced advocate, shares her passion for this issue and the benefits of welcoming this population, such as slowing down and gaining new perspectives.The conversation covers practical steps for churches to reach out and build relationships with the IDD community, as well as the importance of addressing attitudes and misconceptions. The key takeaways highlight the need to recognize the underrepresentation of people with IDD in many congregations and the transformative impact their presence can have.Connect with Victoria White:vwand2@gmail.comwww.disabilityministrynetwork.orgwww.cityhopegr.orgJoin our free Facebook Community: www.facebook.com/groups/smallchurchministryRate, Review, & Follow Laurie on Apple Podcasts"I love Laurie and The Small Church Ministry Podcast!!"
In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Richard Chapman, Assistant Director for Disability Leadership at the Partnership for People with Disabilities in Richmond, Virginia. With a background in mental health counseling and a deep commitment to advancing equity, Richard shares his journey and current work at the intersection of mental health and self-determination for people with intellectual and developmental disabilities (IDD). Richard dives into how increasing self-determination—the ability for individuals to make their own life choices—can lead to better mental health outcomes and an improved quality of life. He discusses his current research, supported by the National Research Consortium on Intellectual Disability and Mental Health, which aims to show a causal relationship between self-determination and reduced psychopathology. Throughout the conversation, Richard highlights the importance of inclusion, cautions against the overuse of polypharmacy, and advocates for restraint-free support systems. He emphasizes that people with IDD not only deserve access to psychotherapy but also thrive when they're empowered to make their own decisions. Don't miss this powerful discussion on redefining support systems, challenging outdated models, and building a more equitable future for people with IDD.
In this episode of the IDD Health Matters Podcast, Dr. Craig Escudé sits down with Eddie Tuduri, a world-class drummer whose career included playing with legends like The Beach Boys, Loggins & Messina, Del Shannon, and Ricky Nelson. But in 1997, a life-altering accident left him paralyzed—an event that ultimately led him to create the Rhythmic Arts Project (TRAP), a groundbreaking program that uses rhythm and percussion to enhance learning, communication, and rehabilitation for individuals with intellectual and developmental disabilities (IDD). Eddie shares his inspiring story of resilience, the impact of music in therapy, and how his passion for drumming transformed into a global movement. He and Dr. Escudé discuss the importance of presuming competence, staying inquisitive, and the power of volunteering in making a meaningful impact on the lives of people with disabilities.
In this episode of IDD Health Matters, Dr. Craig Escudé sits down with Rachel Potts, a dedicated nurse and Director of Nursing for ICF homes, to discuss the challenges and rewards of providing healthcare for individuals with intellectual and developmental disabilities (IDD). Rachel shares her journey into the field, beginning as a school nurse for children with autism, and how she quickly developed a passion for understanding and communicating with non-verbal individuals. Throughout the conversation, Rachel and Dr. Escudé explore the critical need for better training and resources for healthcare professionals, the importance of observation skills in diagnosing health concerns, and the role of direct support professionals (DSPs) in advocating for individuals with IDD. Rachel also shares real-world experiences, including a powerful story about learning to recognize subtle health cues that might otherwise be overlooked. Tune in to learn about the barriers in IDD healthcare, the importance of collaboration between providers, and how simple tools—like augmentative communication apps—can make a big difference. Whether you're a healthcare provider, caregiver, or advocate, this episode offers valuable insights into improving healthcare equity for people with IDD.
Best Buddies: Champions of Disability Inclusion with Anthony Kennedy Shriver In this episode of ‘Pushing Forward with Alycia,' Alycia welcomes Anthony Kennedy Shriver, the founder, chairman, and CEO of Best Buddies International, to honor Best Buddies Month and Spread the Word Day. They discuss the harmful use of the ‘R word,' the growth and impact of Best Buddies since its establishment in 1989, and Anthony's personal inspirations from his family, including his mother, Eunice Kennedy Shriver, and his aunt, Rosemary Kennedy. The conversation highlights the importance of employment, social connections, leadership, and inclusive living for individuals with intellectual and developmental disabilities (IDD). Anthony emphasizes the cultural shift towards inclusion, the powerful role of companies in creating inclusive environments, and Best Buddies' various initiatives, including employment programs, leadership training, and the exciting new launch of a dating app in collaboration with Bumble for people with special abilities. Themes That Shaped the Conversation The True Spirit of America
Join the Behind the Knife Bariatric Surgery Team as they kick off 2025 with a crucial discussion on pediatric and adolescent bariatric surgery. Drs. Matt Martin, Adrian Dan and Katherine Cironi delve into the latest ASMBS guidelines, comparing long-term outcomes of gastric bypass and sleeve gastrectomy in adolescents versus adults. They explore key comorbidities, including type 2 diabetes, hypertension, and orthopedic issues, and emphasize the importance of early intervention. This episode also tackles the complex ethical considerations surrounding surgery in this vulnerable population, including consent, multidisciplinary care, and the evolving role of medical therapies like GLP-1 agonists. Show Hosts: - Matthew Martin - Adrian Dan - Katherine Cironi Learning Objectives: · Identify the current ASMBS guidelines for pediatric and adolescent bariatric surgery, including BMI thresholds and associated comorbidities. · Describe common comorbidities seen in the pediatric population eligible for bariatric surgery, such as type 2 diabetes, hypertension, and orthopedic issues. · Compare and contrast long-term outcomes of bariatric surgery (gastric bypass and sleeve gastrectomy) in adolescents and adults, including remission rates of comorbidities and reoperation rates. · Discuss the importance of a multidisciplinary approach, including psychological and ethical considerations, when evaluating adolescent patients for bariatric surgery. · Explain the ethical framework used in evaluating adolescents for bariatric surgery, including consent/assent, parental involvement, and addressing potential coercion. · Recognize the evolving role of medical management (e.g., GLP-1 agonists) in conjunction with or as an alternative to bariatric surgery in adolescents. Article #1: Inge 2019 – Five-year outcomes of gastric bypass in adolescents as compared with adults https://pubmed.ncbi.nlm.nih.gov/31461610/ - The cumulative effect of sustained severe obesity (BMI >35) from adolescence into adulthood increases the likelihood of diabetes, hypertension, respiratory conditions, kidney dysfunction, walking limitations, and venous edema in legs/feet (when compared to adults that did not report severe obesity in adolescence) - American Society for Metabolic and Bariatric Surgery (ASMBS) guidelines for adolescents who should be considered for bariatric surgery: BMI is ≥35 with a co-morbidity or if they have a BMI ≥40 (class 3 obesity, 140% of the 95th percentile) - This article utilizes the Teen-Longitudinal Assessment of Bariatric Surgery (TEENS LAB) and LABS (adults) databases to evaluate the outcomes of adolescents vs. adults who underwent bariatric surgery Roux-en-Y gastric bypass (2006-2009) - 161 adolescents (13-19 at the time of surgery) with severe obesity (BMI>35) vs 396 adults (25-50 years old at the time of surgery) who have remained obese (BMI>30) since adolescence - Both groups had the gastric bypass procedure as their primary bariatric operation - Both groups had unadjusted similar demographics, however, BMI was higher in adolescence (54) when compared to adults (51) - Results were analyzed using linear mixed and Poisson mixed models to analyze weight and coexisting conditions - After surgery, adolescents were significantly more likely than adults to have remission of type 2 diabetes and hypertension - Increased likelihood of remission of diabetes due to the shorter duration of diabetes, lower baseline glycated Hgb, less use of medications, and increased baseline C-peptide levels - Increased vascular stiffness in adults along with a longer duration of hypertension make the cessation of hypertension less responsive with surgery in adults - No significant difference in percent weight changes between adolescents and adults 5 years after surgery - Both adults and adolescent groups had decreased rates of hypertriglyceridemia and low HDL levels, albeit not significantly different when comparing the two groups - Of note, the rate of abdominal reoperations was significantly higher among adolescents (20%) than among adults (16%) with cholecystectomy representing nearly half the procedures in both groups - Limitations - At baseline, adults had a high prevalence of both diabetes and hypertension - only 14% of adolescents had diabetes vs 31% of adults - Only 30% of adolescents had hypertension vs 61% of adults Article #2: Ryder 2024 – Ten-year outcomes after bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/39476348/ - The goal is to discuss the long-term durability of weight loss and remission of coexisting conditions in adolescents after bariatric surgery - This article utilizes the Teen-Longitudinal Assessment of Bariatric Surgery (TEENS LABS) database to evaluate the 10-year outcomes in adolescents who underwent gastric bypass or sleeve gastrectomy - 260 adolescents with an average age of 17 years old at the time of surgery (ages ranged from 13-19 years old) - 161 adolescents underwent gastric bypass, 99 adolescents underwent sleeve gastrectomy - Results were analyzed using propensity score-adjusted linear and generalized mixed models - At 10 years, the average BMI had decreased significantly with both groups experiencing about a 20% change in BMI on average - To assess comorbidities, both groups were analyzed together - 55% of patients who had DM2 at baseline, were in remission at 10 years - 57% of patients who had HTN at baseline, were in remission at 10 years - 54% of patients who had dyslipidemia at baseline, were in remission at 10 years - Limitations - Neither of these studies compare surgery to medical management. GLP-1s have shown promise for weight loss management but we need more data in terms of long-term outcomes in co-morbidities like diabetes, hypertension, dyslipidemia - Highlighted Outcomes - Metabolic bariatric surgery is quite effective in the adolescent population - Adolescents tend to have weight loss that is similar to that of adults and improved resolution of comorbid conditions (DM2, HTN, dyslipidemia) Article #3: Moore 2020 – Development and application of an ethical framework for pediatric metabolic and bariatric surgery evaluation https://pubmed.ncbi.nlm.nih.gov/33191162/ - The purpose of this paper is to describe the ethical framework that supports the use of metabolic & bariatric surgery (MBS) on the principle of justice, and how providers can conduct a thorough evaluation of patients presenting for these surgeries - Highlights adolescents with intellectual and developmental disabilities (IDD) and preadolescent children who pose more ethical questions before considering surgery - This article utilizes the bariatric surgery center at one children's hospital and the institution's ethics consult service to develop an ethical framework to evaluate pediatric patients seeking bariatric surgery – using the national ASMBS guidelines - This ethical framework utilized 4 central ethical questions 1. Should any patients be automatically excluded from evaluation for MBS? 2. How should it be determined that the benefits of MBS outweigh the risks? 3. How do we ensure the patient fully understands and is capable of cooperating with the surgery and follow-up care? 4. How do we make sure the decision to have surgery is truly voluntary, and not coerced by family or others? - Results: this ethical framework was discussed in depth in two case studies - Overview of framework: an ethical question would arise from the bariatric team they would review & apply the ethical framework. The question is either resolved by the bariatric team OR ethics consult, continue pre-operative workup vs no surgery - Case 1: 17M (BMI 42) with a history of autism spectrum disorder, pre-DM, depression with behavior challenges, HTN, dyslipidemia. Testing at school demonstrates intellectual functioning at a fourth-grade level. Pt lives with mom and 11-year-old sister. Mom endorses food insecurity (on supplemental nutrition assistance benefits) and struggles with her son's large intake of food. 1. Co-morbidities should not be exclusionary, but pt should undergo a comprehensive psychosocial evaluation with attention to family dynamics and support and the patient's decision-making capacity 2. Discuss benefits vs risks. Benefits – decreased progression of DM2, HTN, hyperlipidemia, cardiometabolic dx. Risks – gastric leak, infection, bleeding, dumping syndrome, etc. 3. Can assess decision-making capacity with the surgical team or if need be other teams. In this case, the pt had limited decision-making capacity - His level of understanding remained stable during the pre-op visits, and he gave assent to surgery - The mom identified a second source of support (extended family) - The team talked to both the patient and mother alone and then, together, found that the patient developed an independent desire for surgery, and thus moved forward. - Case 2: 8F (BMI 50) with a history of mod OSA, L slipped capital femoral epiphysis s/p surgical stabilization (6 mos prior). The patient is neurotypical & excels in school, and lives with mom & dad. Referred by mom & dad (mom with a recent history of sleeve gastrectomy). 1. An 8-year-old should not be discriminated against based solely on age, but the patient should be offered more conservative/less invasive options before OR. a. In this case, the family had not yet been offered these nonsurgical approaches (structured weight management program, physical support, dietician) 2. Discuss benefits vs risks. Benefits – preventing progression of hip disease, improvement of OSA, decreased risk of cardiometabolic dx. Risks – anatomic/infectious/nutrition risks 3. Decision-making capacity was assessed. Found that the parents were more advocating for the surgery saying she has a poor quality of life physically and socially. When the patient was separated from her parents, she said she could lose weight if she had healthier foods at home and someone to exercise with. The patient had decision-making capacity & did not assent to surgery. 4. When the ethics team interviewed the patient and parents, the parents had a strong preference toward surgery vs patient was scared of surgery and wanted to try other approaches first a. Decided that the child's dissent outweighed the medical necessity for surgery and that there were conservative treatment options still available to try - Highlighted Outcomes - ASMBS guidelines give us good direction on who qualifies for surgery and emphasize an interdisciplinary approach to decision-making. The decision to pursue surgery should always weigh the benefits and risks and should be made collaboratively with the patient, family, and care team ***SPECIALTY TEAM APPLICATION LINK: https://docs.google.com/forms/d/e/1FAIpQLSdX2a_zsiyaz-NwxKuUUa5cUFolWhOw3945ZRFoRcJR1wjZ4w/viewform?usp=sharing Please visit https://behindtheknife.org to access other high-yield surgical education podcasts, videos and more.
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