Podcasts about Independent living

This episode will focus on vulnerable populations - those who may be at higher risk of exploitation, abuse or violence. VSC Education and Prevention Manager Oliva will discuss three specific groups: children, people with disabilities, and older adults. Each of these populations faces unique risks. By raising awareness and providing these resources, we can all play a role in prevention and support. In the first segment, we will be discussing how to keep children safe online. Guest interviewed will be Detective Hannah Crowe, who works in the Crimes Against Children Unit for the Orlando Police Department. She investigates and helps prevent online crimes targeting minors, ensuring that offenders are held accountable and families have the tools they need to stay safe. In the second segment, we will be discussing individuals with disabilities and how we can empower them and support their independence. Guest interviewed will be NataliaPiedrahita, Program Director for the Center for Independent Living or the CIL. The Center for Independent Living has been breaking down barriers for people with disabilities since 1976 and providing a wide range of services from advocacy and skills training to peer support and community inclusion. In the third segment, we will be discussing how to protect and support older adults – another vulnerable population in our communities. Guest interviewed is Deputy Khayree Pender from the Orange County Sheriff's Office. Deputy Pender has firsthand experience working with senior citizens and their families. He is going to be sharing valuable insights on how we can keep our elders safe. Let's hold space, listen, learn and heal together. Below are hotlines we recommend:VSC Helpline:(407) 500-4325National Sexual Assault Helpline (RAINN): 1-800-656-4673Florida Abuse Hotline: 1-800-962-2873 OR visit myflfamilies.com to report onlineVictim Service Center of Central Florida, Inc.2111 East Michigan Street, Suite 210Orlando, Florida 32806Marketing@VictimServiceCenter.org⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠YouTube⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠TikTok⁠

What are Activities of Daily Living (ADLs)? What about Instrumental Activities of Daily Living (IADLs)? What are the warning signs that someone might need assistance with these daily tasks? How does a senior living community decide which care level a resident needs? What if a resident's needs change and they need different help? What should I do if I notice that my loved one is needing more help with their ADLs and IADLs?Our experts are answering these questions and more. They're sharing specifics about different types of daily tasks like bathing. Plus, offering their best tips and tricks for how to recognize changes with a loved one – and how to talk to them about it.

Episode NotesIn this episode:The biggest misconceptions about assisted living and MedicaidWhy “I'll never put my parent in a home” might do more harm than goodThe financial reality of nursing homes and long-term careHow to recognize early signs it's time for more supportThe power of independent living and nutritional careScott's creation of the Senior Solutions Advisor role and how it's changing the gameReal-world strategies to navigate elder care without guilt or guesswork

Being nosy about others is frowned upon, but being nosy about yourself is important when it comes to your sinuses. Frances Wong has us covered on that front. Thinking of closing your business? Kevin Shaw joins us today to talk about how to wind down your small business the right way—with grace, strategy, and no loose ends. Wendy Porch, Executive Director of the Centre for Independent Living in Toronto, comes on to celebrate 40 years of CILT's role in empowering people with disabilities to live independently. Find Kelly & Company on YouTube!About AMIAMI is a media company that entertains, informs and empowers Canadians with disabilities through three broadcast services — AMI-tv and AMI-audio in English and AMI-télé in French — and streaming platform AMI+. Our vision is to establish AMI as a leader in the offering of accessible content, providing a voice for Canadians with disabilities through authentic storytelling, representation and positive portrayal. To learn more visit AMI.ca and AMItele.ca.Find more great AMI Original Content on AMI+Learn more at AMI.caConnect with Accessible Media Inc. online:X /Twitter @AccessibleMediaInstagram @AccessibleMediaInc / @AMI-audioFacebook at @AccessibleMediaIncTikTok @AccessibleMediaIncEmail feedback@ami.ca

How do we keep up spiritually on our own? Grace, Camille, Holly, and Jillian discuss how on this episode of "The Spot".

Dr. Victor Santiago Pineda as the new Executive Director of CIL!  With his extensive experience as a global advocate for disability rights and his innovative vision, Dr. Pineda is set to lead bThe center for Independent Living into an exhilarating new chapter of empowerment and inclusion.Victor Santiago Pineda was born in Caracas, Venezuela, At the age of two, Pineda was hospitalized with a high fever and for the next five years he demonstrated gradual weakening of his skeletal muscles. By age four, his weakened muscles caused him to fall repeatedly and by age seven, he stopped walking completely. His muscular deterioration would continue and eventually affect his breathing. By the time he was in high school, he needed to use a ventilator at night, and by the time he started his doctoral program in his late-twenties, he required a ventilator twenty-four hours per day.As a child, Pineda was diagnosed with spinal muscular atrophy (SMA-Type II), a form of muscular dystrophy. However, as an adult, he was examined by a neurophysiologist who, with the use of electromyography, determined that there was no evidence to suggest Spinal muscular atrophy. The specific cause of Pineda's muscle weakness was identified as collagenopathy VI, resulting from an extremely common genetic mutation.Pineda attended Corona Del Mar High School in Newport Beach, California, and was selected by his graduating class as a commencement speaker. Upon graduating in 1997, Pineda attended the California Youth Leadership Forum for Students with Disabilities (YLF). As a freshman at the University of California Berkeley, he received specialized support services provided by the Disabled Students Office (DSP) and participated in the Disabled Students Residence Program (DSRP).[citaWhile at UC Berkeley was elected senator for the ASUC student government, defended ethnic studies, with the leadership of Andrew Berk, hehelped resurrect the long dormant Disabled Students Union (DSU). During this time he established the Disability Media Initiative (DMI) and the Pineda Foundation to provide 21st century workforce skills to youth with disabilities. Pineda earned a B.A. in political economy, a B.S. in business administration and, eventually, a master's degree in city and regional planning (MCP) with a concentration in regional economic development. He then accepted an internship in Washington, D.C., where he served as a summer associate at the US Treasury's Department of International Affairs.IPineda was awarded the American Association of People with Disabilities Paul G. Hearne Award.Pineda's "It's About Ability" projectwas honored in Montenegro for the Best Humanitarian Action by UNICEF.Also in 2011, he received the prestigious Mark Bingham Award for Excellence in Achievement by a Young Alumnus/a, Cal Alumni Association for his work in education and human rights.© 2025 Building Abundant Success!!2025 All Rights ReservedJoin Me on ~ iHeart Media @ https://tinyurl.com/iHeartBASSpotify: https://tinyurl.com/yxuy23baAmazon ~ https://tinyurl.com/AmzBAS

On May 20th the New York Association on Independent Living and Caring Majority Rising held a joint press conference, urging the legislature to pass a bill restoring choice in the Consumer Directed Personal Assistance Program. Some argue Governor Kathy Hochul created a monopoly by shuttering some 600 companies, turning the program over to Public Partnerships LLC or PPL. Disabled people who rely on the program, their homecare workers, and advocates are fighting for A.8355/S.9754 to pass, otherwise services will be at risk. Blaise Bryant and Sal Rochelle co-produced this story

Kevin Brucher discusses the various stages of retirement and how to navigate them effectively. He shares personal anecdotes about his long-standing client relationships and emphasizes the importance of planning for living situations in retirement. The conversation also covers financial planning, including the significance of debt management and the peace of mind that comes from eliminating debt. Kevin encourages listeners to engage with their financial advisors and family members to ensure a comfortable retirement experience. The speakers also touch on the significance of tracking expenses and maintaining social connections, as well as the current economic landscape and investment strategies, particularly in cryptocurrencies. Call 800-975-6717. Visit Silver Leaf Financial to learn more.See omnystudio.com/listener for privacy information.

Send us a textMeet Cindy and Christina, speech and physical therapists, who turned their passion to help caregivers and clients stay independent and learn the right way to use adaptive equipment. Check out aecorner.com and their you tube channel!  https://www.youtube.com/@AECornerSupport the show

Live the retirement of your dreams! Sound too good to be true? With a little expert advice from a financial planner you can maximize your savings and have the retirement you dream of.It all starts with a goal. Think about the ways you want to enjoy your life and retirement. A financial planner can work with you to identify the tools and strategies to maximize your savings. You just have to start with the plan and work the plan.Are you interested in learning more from Connie or diving deeper into financial planning topics? Be sure to check out her book, Financial Abundance: Real-Life Stories That Inspire Your Path to Prosperity on Amazon!

Pastor Greg is joined by Pastor Geoff, the Executive Director of SAIL - Supportive Accommodation for Independent Living - and together they discuss Jesus' lesson to the disciples as he washed their feet and how we can go and do likewise in our context today.

Health and wellness are important at every age and exercise is a piece of that. For older adults, fitness can help lead a better and more active life. We're breaking it down to the basics when it comes to fitness tips for older adults, the benefits of exercise and healthy habits, and the long-term impacts of fitness on health. We're covering everything from how frequently and intensely you should exercise to making exercise an enjoyable habit and more. 

James Casey is a disability rights activist from the west of Ireland. He previously worked for the disabled person's organisation ILMI as a policy advisor and prior to this role he worked on the transformative EU Onside Project. He holds a PhD in Critical Disability Studies from the University of Galway, where he was the recipient of a Doctoral Teaching Fellowship and he has presented at UN conferences on behalf of civil society. James, a disabled person, has worked as a lecturer, disability equality consultant and communications advisor in addition to his continued role as a peer reviewer with several international journals.  Prompted by Independent Living Day 2025, Susanne and James discuss what that means in reality and what needs to be delivered by policy makers and Government.   Eurofound - Paths towards independent living and social inclusion in Europe Sage Advocacy - Older Persons in Receipt of Care: Five Human Rights Concerns in Ireland. A Scoping Document    

Disclosures: Dr Taylor has received funding for research from National Institutes of Health, US Department of Agriculture, National Institute on Disability, Independent Living,and Rehabilitation Research, National Cattleman's Beef Association, American Dairy Association Mideast and Abbott Nutrition.What does the future of dietetics look like? We're talking tech, trends, and transforming healthcare with Dr. Christopher Taylor, PhD, RDN, LD, FAND — dietitian, professor, researcher, and national leader in nutrition policy. From where nutrition and dietetics is going, how data translates into practice, and what it means to be a dietitian in a rapidly evolving world.  Dr. Taylor also shares his experience serving on the 2025 Dietary Guidelines Advisory Committee, a dynamic group focused on evaluating and translating science that will shape the world of food and nutrition. This episode was recorded on 4/12/25 and is hosted by Christina M. Rollins, MBA, MS, RDN, LDN, FAND, CNSC.

Occupational therapy has many benefits at every stage of life. For older adults, it can even help maintain independence. Cindy, an occupational therapist, joins us to discuss how OT can help older adults. 

Parent Talkwww.YourHealth.orgwww.SCHomeRx.comwww.thedisruptedpodcast.comwww.experiencinghealthcare.com www.YourHealth.Org

The Japan Branch of Disabled Peoples' International (DPI) has announced that Shoji Nakanishi, a former Chair and long‑serving Standing Committee member of DPI Japan, died on March 26, 2025. Nakanishi founded Japan's first ‘Independent Living Centre' in 1986. Episode Notes: ‘Shoji Nakanishi, Founder of Japan's First Independent Living Centre, Dies Aged 80': https://barrierfreejapan.com/2025/04/06/shoji-nakanishi-founder-of-japans-first-independent-living-centre-dies-aged-80/

Sarah talks autism awareness, upcoming trips with Stone-Hayes Center for Independent Living, numbers served locally, volunteering, and more on the WRAM Morning Show.

In this episode of Focused Healthy Family, Gina and Don Grothoff sit down with Sharon Willis from Ranson Ridge Assisted Living and Memory Care to explore the different levels of care available for aging loved ones. Sharon helps clarify the distinctions between Independent Living, Assisted Living, and Memory Care, offering valuable insights into what each level provides and how families can determine the right fit for their loved ones. We also touch on Skilled Nursing facilities and the important role they play in the continuum of senior care. Whether you're planning ahead or navigating care options right now, this conversation provides helpful guidance and compassionate understanding. Sharon is the Director of Marketing and Admissions with 6 years in healthcare · 3 years Marketing Director at Ranson Ridge Assisted Living & Memory Care · 3 years Managing Director at Right at Home In-home Care & Assistance  and with Entrepreneur           15 years Founder, Director of Operations at Prime Source Educational Services Entrepreneur and accomplished business professional experienced in managing business relations, operations.  Expert at leading a service-oriented organization with a shared mission through outstanding client service, exemplary practices while bringing passion, unparalleled work ethic, collaborative-minded business approach to an organization with a heart for servce.   Member of Board of Directors at LKN Healthcare Networking Forum Mother of grown son Passion for health and wellness Advocate for senior population, including our dementia population #FocusedHealthyFamily #SeniorLiving #AssistedLiving #MemoryCare #IndependentLiving #ElderCareSupport #AgingParents #SkilledNursing #SeniorCareOptions #SeniorLivingCommunity #RansonRidge #NavigatingSeniorCare #SeniorSupportNetwork

You can have your cake and eat it too, fats can be good, diet isn't always best.  Those are just some of the surprising things you'll hear from a registered dietician.  You won't want to miss this in-depth discussion of nutrition information, plus practical tips for anyone in senior living or older adults.{rerelease - episode originally released May 2023} 

Joining us in S4 Episode 5 is Dr Catriona Stewart OBE MCPP where we explore Catriona's own late autism discovery, her lifetime of learning, and her lifetime of work - it's a deeply emotional episode.Catriona founded autistic-led charity SWAN: Scottish Women's Autism Network in 2012, on completion of her PhD research into the experiences of autistic girls, to provide peer support, build on the knowledge-base, and raise levels of understanding. Advisor to a number of high level national enquiries and campaigns, including the 3 year National Autism Project, and the 2 year Independent Review of the Mental Health Act (Scotland) in relation to Autism and Learning Disability, she ran an 18 month Employment Project for Scottish Government, and was an Ambassador to their Improving Understanding of Autism #DifferentMinds campaign, 2019-2023. She was a member of John (Lord) Scott KC's human-rights focused COVID-response Independent Advisory Group to the Scottish Police Authority (SPA) in 2020-21 and has since been a member of the SPA Board, where she is regarded as a Champion for Disability and the Neurominorities. She has delivered numerous papers and plenary presentations, training and workshops, in the UK and abroad. Most recent was the AETAPE bi-annual congress in Cadiz to which she presented on Independent Living for Autistic Adults, the barriers and enablers, from a Human Rights perspective. Her work is focused on community engagement, participatory action research, equality, diversity and inclusion, and Human Rights. It is informed by her research, her years of professional experience and her lived experience as a late-diagnosed autistic woman and mother.To Catriona and all the autistic women who have paved the way before us, the trailblazers who have prepared the ground in this new world for others to follow. We see you and we give you our gratitude for opening the door to this brave new rediscovered world.Explore SWAN Connect with Catherine & Pete⁠⁠⁠Visit Catherine's website ⁠⁠⁠⁠Order Catherine's NEW Book⁠ 'Rediscovered: A Compassionate and Courageous Guide for Late Discovered Autistic Women (and their allies) which was published 21st February 2025 by JKP ⁠⁠⁠⁠Contact ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Catherine Asta⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pete's ⁠⁠⁠⁠⁠Website⁠⁠⁠⁠⁠Follow Pete on ⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠Buy ⁠⁠⁠⁠⁠Untypical⁠⁠⁠⁠⁠Need Post Discovery Support?⁠⁠⁠⁠Join our next 6 week post discovery support circle⁠⁠⁠⁠⁠⁠⁠Join our next 6 week relational space circle⁠⁠⁠⁠⁠⁠Join Catherine's Frequency Circle 1.5 hour Masterclass⁠⁠⁠⁠⁠⁠⁠Join our Late Discovered Club Community⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Explore The Asta Community of Professionals ⁠⁠⁠Support our work3 ways you can support the podcast and the work we do...Become a ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠member⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠or partner and join our growing community.Buy us a ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠coffee.⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Rate & review⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ the show or an episode⁠⁠⁠⁠⁠⁠⁠⁠⁠Read about our 10 Year Plan⁠⁠⁠⁠⁠⁠⁠⁠⁠Thank you to our ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Community Partners ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠who are supporting the work that we are doing.⁠⁠⁠⁠⁠⁠⁠Nordens⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Deborah Bulcock Coaching & Consulting ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠A Tidy Mind⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠The Growth Pod⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Hormones On The Blink ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠About the Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.thelatediscoveredclub.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Founder & Host Catherine AstaPodcast Editor Caty AvaS4 Guest Co-Host Pete WharmbyMusic by⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Allora⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Follow us on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Read more about our impact over the last 2 years ⁠⁠here⁠

The Future of Independent Living for Adults with Developmental Disabilities

Jerry spoke to Lorraine Gordon, manager of Kerry Respite Care about the organisation’s strategic plan.

In this episode, Lindsay DeLong joins Riley Rees to discuss key strategies for aging in place and creating an accessible home. From smart home technology to simple home modifications, Lindsay shares practical tips and disability-friendly hacks to improve safety, mobility, and independent living.In This Episode, we chat about:Why planning for accessibility now is crucial for future independenceHow smart home modifications enhance accessibility and safetyBudget-friendly accessibility modifications to improve daily lifeThe importance of smart safety features in the homeHow AI and voice-controlled Devices Simplify Home ManagementCommunity resources for smart home upgrades and financial assistanceThe role of 3D printing in creating customized adaptive toolsEpisode Resources:Lindsay's Instagram (Instagram)Lindsay's Tiktok (Tiktok)Lindsay's Youtube (Youtube)At-Home Test Kits for Health & Wellness (Shop)Sign up for Tai Chi, Qigong, Meditation, Mindfulness, and Yoga live classes with Prime (get free trial)Thank you so much for tuning in! If you enjoyed the content, we would love it if you took 2 minutes to leave a 5-star review!The Sofia Unfiltered by Sofia Health is for general informational and entertainment purposes only and does not constitute the practice of medicine, nursing, or other professional healthcare services, including the giving of medical advice. No doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have. For any health concerns, users should seek the assistance of their healthcare professionals.

En este episodio hablaremos sobre el caso Texas vs Becerra y como este podría afectar a las personas con diversidad funcional.  Deja tu reseña en Apple Podcast, Audible y Spotify con cinco estrellas. Comparte un screen-shot de este episodio en tus redes sociales y tus chats.  Sígueme en:  Instagram: Diversidad Funcional en Acción  Facebook: Diversidad Funcional en Acción  TikTok: Diversidad Funcional en Acción Suscríbete a este podcast en tu plataforma favorita: Apple Podcast, Spotify, Audible,  y iHeart Radio. Puedes enviarnos tus preguntas y peticiones de temas a diversidadfuncionalenaccion@gmail.com. Recursos:    •   Sitio web de DREDF con explicación del caso Texas v. Becerra y guía de acciones.    •   Alerta de Access Living/NCIL “Save Section 504” con instrucciones para contactar a Fiscales Generales.    •   Página de la NDSS sobre cómo actuar para proteger la Sección 504.    •   Organizaciones nacionales como The Arc, National Council on Independent Living, ADA National Network, etc., que proveen información y apoyo. PREGUNTAS FRECUENTES DE LA SECCIÓN 504 ¡Mantengámonos unidos y atentos! Los derechos alcanzados se defienden día a día.

Freda Uwa grew up in Nygeria. There she attended college securing a bachelor's degree and then went on to do some advance studies as well. She is a trained nurse. She also is a nutrition expert and, as she tells us, she loves to cook.   Five years ago Freda moved to Canada. She spent time as a mental health case manager even before her husband and three boys moved to Canada to join her. As she tells us, while she absolutely loved her time as a case manager, the job was quite taxing on her. She had to handle many cases where she had no one with whom to share her experiences. As we discuss here, not having any opportunity to decompress by talking to a spouse or others is by no means healthy.   Eventually Freda gave up her case management job and, just about a year ago, she assumed the job of Executive Director of Independent Living Canada. This organization oversees 24 independently operated independent living centers which are spread throughout Canada. She has shown that she is ideal for the job due to her leadership and project management training and skills. Freda is the first black leader of IL Canada which has been in existence for 38 years.   Freda gives us lots of insights on leadership and community. I hope you enjoy our time with Freda and that you will take the time to give this episode and Unstoppable Mindset a 5-star rating.       About the Guest:   Freda Uwa is a distinguished leader and advocate in the fields of independent living, accessibility, and mental health. Freda draws from her extensive experience in Canada to drive impactful initiatives and foster inclusive communities.   Currently, Freda serves as the National Executive Director of Independent Living Canada, overseeing 24 Independent Living Centres led by individual Executive Directors across the country. In this role, she made history as the first Black leader in the organization's 38-year history and the first African in Canada to ever lead the sector as National Executive Director.   Freda's notable accomplishments include her work as the Project Manager for the Creating Accessible Events Project for the Government of Canada through Accessible Standards Canada. This role underscores her commitment to ensuring that events across the nation are inclusive and accessible to all individuals, regardless of their abilities.   As the Regional Coordinator for the IDEA Project for Race and Disability Canada, Freda plays a pivotal role in addressing the intersectionality of race and disability, advocating for policies and practices that promote equity and inclusion.Her extensive background in mental health is exemplified by her previous role as a Mental Health and Addictions Case Manager, where she provided critical support and care to individuals facing mental health challenges and substance use issues.   In addition to her leadership and advocacy roles, Freda holds a Canadian Red Seal Endorsement for Skills and Trades, showcasing her dedication to professional excellence and her commitment to fostering skill development and employment opportunities.     Freda Uwa's career is marked by her unwavering dedication to championing the rights and needs of marginalized communities, her innovative approach to project management, and her exceptional leadership in promoting independent living and accessibility. Her work continues to inspire and drive positive change across Canada, Africa and beyond.   Ways to connect with Freda:   IL Canada Facebook Link - https://www.facebook.com/MyIndependentLivingCanada?mibextid=ZbWKwL Freda's LinkedIn - https://www.linkedin.com/in/freda-uwa-7515a235?utm_source=share&utm_campaign=share_via&utm_content=profile&utm_medium=android_app  Freda Instagram (Business page)  - https://www.instagram.com/luluseventsandkitchen?igsh=YW10OWs3ODY5d2Q1   About the Host:   Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.   Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards.   https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/   accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/   https://www.facebook.com/accessibe/       Thanks for listening!   Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below!   Subscribe to the podcast   If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can subscribe in your favorite podcast app. You can also support our podcast through our tip jar https://tips.pinecast.com/jar/unstoppable-mindset .   Leave us an Apple Podcasts review   Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.       Transcription Notes: Michael Hingson ** 00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us.   Michael Hingson ** 01:21 Well, hi everyone, and welcome once again to unstoppable mindset where inclusion, diversity and the unexpected meet, and we do get to talk about inclusion today. And as some of you know who are regular listeners to this podcast, the reason it is inclusion, diversity in the unexpected is it's inclusion because it is. Diversity comes second after inclusion, because if you talk to people about diversity, typically they never talk about disabilities. We get left out of the discussion. And then the unexpected is anything that doesn't have anything to do with inclusion or diversity, which is probably most of the guests that we deal with. But today, we are going to have the honor of speaking to Freda Uwa and Freda is the executive director of independent living Canada, which has responsibility or works with the 24 independent living centers around Canada. And so I'm really looking forward to learning more about that and hearing about it and looking forward to hearing all that Freda has to say. So Freda, we want to welcome you to unstoppable mindset, and we're really glad you're here.   Freda Uwa ** 02:29 Thank you, Michael, thanks for having me. Well, I   Michael Hingson ** 02:33 love to start kind of little bit different than maybe some people do tell us about the early Frida, growing up and all that sort of stuff, anything that that you want us to know, and you don't have to tell us all your secrets, but tell us about the early freedom.   Freda Uwa ** 02:49 Oh, that's fun. Thanks. Michael. Freda, the little girl. Freda i Oh, that's so much fun. Now I think about growing up and all of the memories that that comes with so I I am privileged to have grown in a closely middle class family in Nigeria. I grew up in Nigeria, one of the countries in Africa, and it was fun, right? The bills, just happy go lucky child. I was the one child that had all the breast of energy, and I just loved to laugh. So that was all of that. There was family, faith based activities, and I also had schooling, of course. And went to college, did my nursing, went on to do a BSc in home Science and Management, and with an option in nutrition and dietetics and so all of that was fun. And of course, I enjoyed having to be part of a family that loved to do things together. So that was, that's Freda, oh, the little girl. Frida, yeah,   Michael Hingson ** 04:02 that's the little girl. Frida, well, that works out pretty well. So you have a bachelor's did you go anywhere beyond a bachelor's degree or   Freda Uwa ** 04:11 Yeah, so in Canada, I had, I took a post grad certificate in nursing, leadership and management, and then community mental health certificate as well. So yeah,   Michael Hingson ** 04:23 what that works out pretty well and certainly kept you busy. And what did? What did you do with all that? Once you got your degrees,   Freda Uwa ** 04:33 I evolved. You evolved.   Michael Hingson ** 04:37 You grew up then, huh?   Freda Uwa ** 04:39 Absolutely, absolutely. So there was a lot of growth that came with that, a lot of responsibilities. I moved to Canada, figured out new part and all of that. So there was all of the growth that happened and that forces you to evolve. So the degree, the experience and all of that. So in the short answer is I evolved with that. So yeah. Us.   Michael Hingson ** 05:01 Okay, and so what kind of jobs did you hold   Freda Uwa ** 05:09 all my life? You mean, or you're just asking for a period in my life?   Michael Hingson ** 05:13 Yes, so once college was over, what kind of, what kind of jobs did you actually do then for a while?   Freda Uwa ** 05:19 Okay, so I, I am a registered nurse as well, so I'm right. I have many parts, right? So I did nursing. I also have a business, a food business as well. So I was into events management and catering at the time, and then the core of what I do now, also started in Nigeria, where I led a nonprofit for about four years before moving over to Canada, did some schooling, and then came back to the space that I love, and that's social services around people, supporting people with disabilities and all of that so and that's a pack of all that I did in terms of work.   Michael Hingson ** 06:01 What brought you from Nigeria to Canada?   Freda Uwa ** 06:05 First of all, it was cooling, like I came to experience that other side of education, right? So I came with that flare, and then family moved over, and now I'm here.   Michael Hingson ** 06:19 Well, that works out pretty well we i People won't necessarily see it, but we just have company joining us. My cat has joined us. I see and I'm trying to get her up on the back of our desk chair so that she will hopefully leave us alone. Anyway, there we go. Well, so how long ago did you come over from Nigeria to Canada? I've been in   Freda Uwa ** 06:45 Canada going on five years now. I I moved here at the peak of, not the peak at the beginning of the pandemic. So I came in just as I got into Canada, everywhere was shut down. So I'm like, is this the reality? Is this what it feels like being here? So I was almost locked up right away. So yeah, that's, that's my journey. So it's about going on five years now.   Michael Hingson ** 07:10 Wow. So you've been here a while. So you, you came over here and you, you decided that your passion was really working in the arena of disabilities and and so on. So what? What really caused you to do that? Why did you decide that that's what you really wanted to do with your life?   Freda Uwa ** 07:34 Great question. Michael, so I've always known that I had what I call a greater calling, like I've always wanted to live my purpose in life. I know I did share that. I am a registered nurse in Nigeria, and having all of that, and also business owner in Nigeria, but I find that in all that I did, there was something, there was a missing piece, right? So I needed to, I needed to fill that void and recall that I told you that I grew up in a close knit family setting, so my younger sister that I love today, by the way, she has a disability, and I've been a primary caregiver I had, or I was her primary caregiver for a while, and I also watched my mother struggle through that. At some point, my mother, my mother's life, was almost on hold because she needed to take care of her child. So that, in itself, created the need for me to just fill a void, right? So it was beyond just where, where's the money, right? It was beyond that, and I needed to just leave out my purpose and find a career that would really and genuinely make me happy while I'm touching life in the way that I know how to   Michael Hingson ** 09:05 Yeah, well, and I believe very firmly in the fact that if you're really doing what you like to do, then it isn't really a job. It's it's a whole lot more fun, and it's a whole lot more rewarding. Absolutely,   Freda Uwa ** 09:19 I'm having fun, Michael, I'm having funded. So yes, which   Michael Hingson ** 09:22 is, which is really important to be able to do, what if I can ask, is the disability that your sister has? She's   Freda Uwa ** 09:30 She has intellectual disability. So it's, yeah, so it's all and again, with misdiagnosis and all of that. So that's a whole situation going on, right there. So that's why, that's how I how come I, I'm like, there is a void that needs to be filled, right? So it's all of the complications that comes out from misdiagnosis and her living through that all her life. Yeah, yeah.   Michael Hingson ** 09:54 Now is, is she and your family still in Nigeria, or did they move over here too?   Freda Uwa ** 09:59 I know my my mom and my sister are still in Nigeria. In   Michael Hingson ** 10:04 Nigeria, well, I assume you go back and visit every so often. That's all we have. Yeah, you gotta do that well and and when you can't go back, you've got things like zoom so you can still look at them and talk to them.   Freda Uwa ** 10:18 Absolutely we, we thank God for technology. So it's all of that, yeah,   Michael Hingson ** 10:24 yeah, technology has certainly made a significant difference in the whole art of communications over the past, oh, especially 10 years, but certainly in the last five years, just because of what the pandemic has done and so on, for sure. So how did you end up specifically deciding to get involved with independent living centers, and how did you end up being the executive director of independent living Canada?   Freda Uwa ** 10:55 Oh, interesting. That's a great question. Michael, so I, I, I say this always, my story and journey has always been that of resilience and just a journey of self discovery and awareness. I'll give you, I'll share with you. Michael, right, as I came into Canada in 2020, at the beginning of COVID, I was in, I was in a I was in on a conversation with a friend at the time, and he was sharing an experience, and was speaking to me about somebody, and speaking to me about a newcomer who had come into Canada and was leading an organization like an like an administrator at the time, and this history was about the consequences of mismanagement of some sort. Hm, and he, he let me know that the, the woman got into trouble, and, you know, was relieved of her job and all of that because she didn't do something, right? But while I was listening to that story, a seed was planted in me that, hold on, I've got this experience, I've got this much knowledge, I've got this much abilities, I've got this much skills. Then if a newcomer could transfer all of that here to Canada and do all of this. That means there is space for me somewhere. So it wasn't more so of yes, what you shouldn't do, it's something, it didn't come to me as though, like it's a test for your competence or something. I knew there was, there was a possibility somewhere. So that was when the seed was planted in me. And as soon as I began to look for jobs, I started looking out for the jobs that aligned with what I had done, including my executive executive leadership in Nigeria. And that was how it happened that I was done schooling, and I started looking for opportunities, and I went out to apply for jobs that would speak to my competencies and and the rest that says history. So I we, that's how the seed was planted. I'm like, okay, yeah, there I go, and I'll tell you what happened with my very first interview and Michael, I didn't get called for an interview and Ed role. And I, I'm not sure if you know about the process with executive hiring, it's a lot of steps, like you do the phone the phone interview, you do the writing, you go for, like a first phase, a second phase, and all of that. It was really daunting. And I went through all the phases, and I was feeling really confident and good about it. I actually went through to the last phase where I had to go in person to see the outgoing Ed who was retiring at the time, and kind of like had a meeting slash interview situation that it looked as though I was getting on boarded, but it wasn't, like official. So in my head, I felt that this is it. I'm there, yeah. So I did, I did all of that. I went back home, and a couple of days later I got the email, you know, one of those emails, and I'm like, oh, oh, no. So this is it's that's no way on from here that this is it. I And then like, Oh, thank you for your time and all of that. So we've moved on to XYZ, and you know all of those words, I'm like, oh, in that moment, I didn't feel like, I didn't feel too bad, because I felt like, Oh, this is my first and I got this close, then that's something, right? So yeah, I'm like, okay, that's not too bad. But what happened next was what really got me thinking I continued my job search, right? So a couple of weeks later, I get an email from the same organization asking if I. Still available for the role and for the job. And I was excited again. I'm like, Oh yes, I can. Why not? And then in their response there, they wanted to have a second interview, set of interview. I'm like, hold on, what's going on? I'm like, okay, that's not too bad. I will, I will make myself available for the interview, and I did, and I think we had the next one, and I got really worried. And then after that, I got an email saying the same thing, that they had given the role to somebody else, and that got me angry. Yeah, right. So I needed to know what it was. You name it. Let me what I so I sent out an email to them. I'm like, Oh, hold on. So what's all this? What's, what's, what's going on, let me know why my like, I just needed to know. And then they responded to say that I was over qualified for the role. I'm like, that's, that's, that's a dumb answer, right? So, Hawaii, why would you say that to be now that, now that I'm thinking about it, right? So I took all of that in, and I decided to move on from there and just pick up the lessons. And then went forward with that. So that experience in itself shapes me into the resilience of not just giving up, because I knew I was very close to getting what I wanted right. So I went on from there, and I became an addictions case manager, addictions and mental health case manager, a job that I really, really love. It was so beautiful I had. I had the privilege of going to flying into the isolated reserves in those little, small airplanes and all of that. So I give so many emergency responses, whether it's flawed calls for suicide and all of those mental health work. I really loved that job, but it was so heavy on me, and it was at the time when I was going through a lot in my my own self, like emotionally and my mental health, I was by myself in Canada. At the time, my my family, that my husband and kids were still in Nigeria. So the weight of all of that was too much on me, like there was nothing to decompress to, if you know what I mean, right? So you go, you hear all of these heavy things, and you cannot really process your own feelings. And then I'm also thinking about the same situation, and I'm thinking about, Oh, what's going on? What's my what's what's going on in my head? So I didn't, I didn't, I didn't stay too long on that job. And then I and also I left because it was too much, like I said, even though I loved the job. And then I went on to become the CEO of an Ability Center, which is also supporting individuals with intellectual disabilities. And from there on, was when I, I moved on to il Canada, and I'm loving it. So that's my story of resilience.   Michael Hingson ** 17:59 Yeah, it is really tough when you're you're by yourself, and you don't have anyone to talk to and to share things with, because talking with someone, talking things out, is always important and is always helpful, because it helps you put things in perspective. And when you can't do that, it just bottles up inside of you, and that's that's not good. Mm, hmm,   18:23 absolutely,   Michael Hingson ** 18:26 well, but, but you, you moved on. So how long have you been in il Canada? Now   Freda Uwa ** 18:33 going on one year? Oh, September, yes. So it's just what going on one year in September. So, yeah, feel very new.   Michael Hingson ** 18:42 So tell me a little bit about il Canada and what you do and so on.   Freda Uwa ** 18:47 Okay, so I'll Canada. It's basically a network of independent living centers across the country. It started in, it was it started in it started as a movement a long time ago, in 1986 it was formerly known as Canadian Association of Independent Living Centers, and now now independent living Canada. So it's all about providing a collective voice on the on national issues for all of our member centers and fostering and maintaining partnerships in that regard, building capacity and scaling what we're doing, especially on the national level. So our member centers have the via our foot soldiers in different different communities and different local centers. So we are we've got il member centers in almost across every project, every province in Canada. It's in Saskatchewan, Ontario, you name it, it's everywhere. So IO Canada, it's we thrive on. Four core pillars of service, which would be independent living, skills development, peer support, Networking and Information and all of the resources that we do. So we provide a national voice for all 24 member centers, and they are all run by different executive directors and offering unique needs to their communities,   Michael Hingson ** 20:25 so and so. What you do is, do you do you coordinate services? Do you act as more of a case manager and distribute funds? Or what does IO Canada do for the 24 agencies, right?   Freda Uwa ** 20:43 Great question. So these, like I said, the 24 agencies or centers, are independent of like they are autonomous, like the source funds and all of that, even though we provide some substantial but it is really, they are very independent of what we do, so we are like a collective voice for the member centers on the national level. So that's what IEL Canada does. We there's monthly meetings, there is all of the accreditations that we do and just ensuring that all accredited member centers are operating within our four core pillars of service that promotes independent living for people with cross disabilities.   Michael Hingson ** 21:29 What relationship or how do you interact with organizations like the Canadian National Institute for the Blind and so on.   Freda Uwa ** 21:39 So that in itself. It's it will totally depend on what projects we're working on, right? So it would be project based or research based, right? So we are a national voice for all of our centers. So if, if any of our Centers are partnering, partnering with any individual Association, that is the partnership we're seeking, and we will support and encourage them. But on the national level, it's usually project based or collaboration in terms of research or information, or whatever that looks like, or maybe communities of practice and all of that.   Michael Hingson ** 22:17 Well, how does well, let me rephrase that, what does CNIB do, as opposed to what the independent living centers do? Do you know,   Freda Uwa ** 22:28 again, each independent living center is operating on different like they have, they have tailored made programs for their centers, right? So some people have communities that they have programs that support vision loss or the blind and all the other centers who have programs for youth, employment, housing, transportation. So they are all direct funding to support independent living in terms of managing your resources and other skills. So for in that regard, it would naturally lie with the centers and how they want to collaborate with cnid. So it's for us at the national level. It would mostly be on research or any collaboration on the project, but to actually reach out to the consumers or participants, it will be the independent centers, like the member centers themselves, right?   Michael Hingson ** 23:24 So a CNI be more of a funding agency or, or, well, I know that they do provide services, but I was just trying to understand where the overlap is, or, or how the two types of organizations interact with each other.   Freda Uwa ** 23:39 I'm not familiar with their model, like, I don't know about their model, yeah, but most, what we do with every organization, or most organization is collaboration or partnership, right? So they may have a different funding model for us at IELTS Canada. It's it's center is working on our four core pillars, providing different programs and services within these four populars, and they're at liberty to fill up make these programs to suit their communities.   Michael Hingson ** 24:09 Okay? So they they may work, and they may get some funding from CNIB for specific projects and so on. But I, I understand that you're dealing with being closer to the individual communities where   Freda Uwa ** 24:22 you are. Oh, for sure, that's with the member centers. Yeah, for myself, I am, like the administrative head for the national organization, the National aisle, right,   Michael Hingson ** 24:31 right. Yeah, right. Well, so when, when you've been working and you've you've now been doing some of this for a while, what would be for you a pivotal moment, given our philosophy, or our title, unstoppable mindset, where is a pivotal moment in your life, where you had to really demonstrate resilience? It's an unstoppability.   Freda Uwa ** 25:03 I like that question so much. I I kind of feel like, um, I've had so many of those moments, right? I've had the moment where I had to face the pandemic, pandemic all by myself, without my family here. And I'm like, No, so I have to be here for me. I have to be here for my family as well. So all of those is all of that. It's a part of the package, right? And then I also had the moment where I started on that conversation with my friend that spoke about that lady, and it planted a seed in my heart, like I was there was something for me if I was going to transfer all of my skills from Nigeria. I could do it right and and then again, the next big thing that happened to me was having a meltdown on my job as a as a case manager for mental health and addictions. So all of those moments left me, like you said, with that unstoppable mindset, like growth is not always linear, like you get bumps, you get heat, and then you have to get up and you keep moving. Yeah,   Michael Hingson ** 26:13 yeah, you you've got to make that decision to do that, to make the decision to to move forward. And that's an individual choice, but when you decide to do it and you stick to it, you get such a wonderful feeling of accomplishment, don't you Exactly,   Freda Uwa ** 26:30 exactly, that's, that's, that's, yeah, yeah,   Michael Hingson ** 26:35 which is, which is pretty cool. So you are able to, you know, to move forward and do the things that you do, the things that you got to do. So you're also unusual in another way, in terms of being the first black executive director of independent living Canada and one of the first two black leaders in a lot of different areas and aspects of the whole rehabilitation and independent living environment. Does that get to be a challenge for you, or do you regard that as a plus or what?   Freda Uwa ** 27:15 I think it's both, because it comes with a lot of pressure, for sure, and then there is that feeling of who, what's here, like, am I finding somebody that looks like me, and what's there to learn from? Right? So, who's gone ahead before me, and where's the where is all the mentorship? Where would that come from? Right? But I also find that I've got a lot, a ton of support from my board. Yeah, ever so supportful, self supportive and yeah, so that has helped. So it's a feeling of of there is work to be done, and, of course, a feeling of accomplishment of some sort, but more so that I I've got a bucket to feel with what's been expected, like I need to give back with what's been poured into me, right? So that's all of that, but in one hand, in the one hand, I see that I there is a gap. There is a gap in representation, for sure. I know we talk about inclusion in terms of people with disabilities, and also thinking about building capacity for young leaders and newcomer leaders coming forward, and making sure that they find a mentorship and some form of support to build capacity in leadership. In that regard, because they are usually different, different levels of expectations from a racialized person as a leader and a non racialized person. So it's all of that, all of that pressure for sure, and having to face that, and constantly telling your story or living through barriers, even as a leader, you have constant barriers you keep facing and then kind of rewriting your own story. I would say,   Michael Hingson ** 29:07 now you don't have a disability in any traditional sense, right? I   Freda Uwa ** 29:12 would say undiagnosed, because I don't know. I feel like I know I have something, but it's undiagnosed. So yes,   Michael Hingson ** 29:19 well, there you go. Something, something to figure out, right? Yes,   Freda Uwa ** 29:24 for sure. And I've always said it, it's, it's a continuum, like it's a spectrum. So it's, everybody's just one life event away from a disability, right? So you never know until you until you find out. Well,   Michael Hingson ** 29:37 of course, people have heard me say on this podcast that actually, everyone has a disability. For most of you, it's you're light dependent. You don't do well when there isn't light around for you to see what you're doing. And inventing the electric light bulb kind of led to a cover up of your disability. But it's still there. It's just that it doesn't manifest itself very often. And the reason, I think it's important. Important to take that kind of a view is that all too often, and I'd be interested in your thoughts on this, but all too often, when people think about disability, they think about, well, it's called disability because it's a lack of ability, and it isn't really, but people think less of people who they regard as traditionally having some sort of disability, and the result is that they look down on or think they're better than somebody with a disability. And I adopted the definition that we all have disabilities, they just manifest differently. In order to try to help start to level that playing field and get people to understand that in reality, we all have challenges, and we all have gifts, and we shouldn't look down on anyone just because they don't have some of the gifts that we do.   Freda Uwa ** 30:53 That's a great way to look at it. Michael, I so in recent times in my work, there is this I've heard about social location, this phrase called social location, Michael, I   Michael Hingson ** 31:07 have not heard much about that. I'm not overly familiar with it, so go ahead, I can imagine. But go ahead. Okay,   Freda Uwa ** 31:13 so that's like, exactly where you are on your social map. I would say, just to put it in a clear way, right? So it's all of those identity markers that make you, right? You might think you don't, you have it all here, but in the next high you're you're not as much privileged as the next person. So it's being on different sports in that social map, right? So I could be, let the I could, I could not have a disability that I know, but in some way I'm I'm disadvantaged, right? So it's all of that coming together and realizing that when we when we're seeking for inclusion for all, it's actually all. And the definition of all can be expanded to mean actually every single person, and not just people with stability. It's every single person ensuring, keeping, taking into consideration that you are not always at the top all the time. You could be privileged in so many areas, and then you are disadvantaged in some area. So it's that social location concept that should, that should inform our need to level the playing fields at all time.   Michael Hingson ** 32:31 Yeah, um, unfortunately, all too often, people won't adopt that principle, and they won't adopt that mindset. So they really think that they're better than others. The unemployment rate among persons with disabilities is still very high compared to the general population. It's still in the 50 to 60% range. And it's not because people with disabilities can't work. It's that people who don't happen to have those same disabilities think that people with those disabilities can't work and so as a result, they're never given the opportunity.   Freda Uwa ** 33:11 Yeah, that's a constant struggle, for sure. Yeah, and that's why we do what we do,   Michael Hingson ** 33:16 right, which is very important to do. So you, you, you work as the executive director, is the CEO of the organization. Do you do all the independent living centers, then do a lot of work with consumer organizations and other things in their local areas, so that they keep very close ties to consumers.   Freda Uwa ** 33:44 Oh, for sure, that's the, that's that's the that's the structure of innovative living Canada, right? So il Canada and il member centers are close to the local communities. So all il member centers are community based centers. So they're, they're in the communities and partnering with, partnering with local communities to meet any unmet needs for persons with disabilities. Okay, yeah, so, yeah.   Michael Hingson ** 34:15 So now you're, you're obviously more in an administrative kind of role, but what kind of involvement or or interactions do you have with like consumers and consumer organizations? That's a tricky   Freda Uwa ** 34:29 question, right? So I I've only been here one year. Yeah, I understand. I can speak to the last 11 months, right? So so far with consumer organizations, I am only, only partnered in terms of a project or a research it's still a project or project, right? So whether it's but I feel like that comes from the centers as well, because my the independent living centers. You. Get us involved in partnerships that it's just beyond them, right? So we get partnership partnership, and we need to standing as a national organization to get three or four of our IELTS member centers into that partnership. So that's the level we play. More like we the go between and giving that voice to them. But generally I am more of the administrator than being involved in consumer agencies or organizations, right?   Michael Hingson ** 35:32 Yeah, no, I understand that's I was just wondering if, if, if there is involvement, or how you ever get to interact with them, because I would think that working with consumer organizations in some manner can strengthen what you do as an organization.   Freda Uwa ** 35:51 Yeah, yeah, for sure, we're still, we are open to partnerships, for sure, but it's a process. It's yeah, it's a process, and then for sure, it's what the local centers are needing, and that's what we are doing at the national level, right? So it's, it's a, it's a two way street with the local sense, local member centers. We are nothing without our member centers. So that, yeah, right,   Michael Hingson ** 36:13 right. No, I understand. Well, that's that is still pretty cool, though, and it gives you, it gives you some freedom, and it gives you the ability to look at things from a higher level. But I would assume that it also gives you the opportunity, then to look at how you can work and make a difference in the whole independent living process around Canada.   Freda Uwa ** 36:39 That's for sure. That's for sure. There is work for sure, and that's what we have started doing. So there's a lot of traction happening right now, and just taking one day at a time and reviewing all our partnerships and building other collab partnerships and collaborating in other areas as well. So yeah, I agree. Yeah.   Michael Hingson ** 37:01 Yeah. Now, I didn't say it earlier, but we met through Sheldon Lewis at accessibe. So I guess you have, have you looked at accessibe as a product, and are you working with Sheldon on that sort of thing, or, or, How is accessibe involved with the Independent Living Center movement in Canada, I   Freda Uwa ** 37:21 would say we are currently having that conversation right now. So, yes,   Michael Hingson ** 37:28 well, so, so at this point, you're looking to see where it might fit and and how, how it would work. Yeah.   Freda Uwa ** 37:39 So we're reviewing all of that. We are reviewing the product and going through the board and test running everything. So, yeah, so just reviewing, what, how that works, yeah.   Michael Hingson ** 37:49 So you're actually, so you're actually testing it and looking at it to see what it does and doesn't do and so on.   Freda Uwa ** 37:55 Exactly, yes.   Michael Hingson ** 37:57 What about the whole concept, from your standpoint of Internet access and inclusion, the problem that we see overall is that in our world, maybe 3% of websites have really made an effort to put something on their site to make the website accessible or inclusive, but Most places still haven't done that. How do we change   Freda Uwa ** 38:22 that? I think this is as it's it's still the whole package, about 31 step at a time, and I'm very careful, and I caution against tokenism and just wanting to do something because you want to check up the boxes, right? Yeah, what? What's the intention? Really? Are you really concerned about your consumers, your customers, your clients? Are you really wanting to reach everybody, and everybody, right? So what does that look like for you? So I'm Yeah, it's concerning, for sure, that we have such low percentage of people of websites who are looking into being more accessible and not just checking off one box, right? So, and it's broad, it's really broad because accessibility is it's not just one thing, right? So internet accessibility for sure, it's the next big thing. And at our planned AGM coming up here in September, we are, that's the key, the the main theme of our of our meeting, it's AI and the future of accessibility for all. So, yeah, so that is a good thing that you asked it, because we are looking to build a future where accessibility is second nature to everybody.   Michael Hingson ** 39:51 Someone said something once, and I think is a is a really wonderful thought to have, and that is that we a. All look forward to the day when we are so inclusive that access, or accessibility is a term that we forget and never have to use anymore, because it's just so automatic.   Freda Uwa ** 40:12 I like that. I like that. That's second nature, right? So we don't have to think about it like this is what it is. It's universal. It's a universal design. This is right. Want to see, right? So, and again, like I said, it's not you're not doing it for them. It's not an us, them conversation. It's for all of us, because it's one live event from one disability to the next. So it's creating a world where everybody can thrive, and I empowered to thrive equally, right? Yeah, and   Michael Hingson ** 40:44 I think that is that is so important, and I hope that that day comes sooner than later, but I think it's still a ways off, but I think it is one of those things to really strive for, because as as you and I have both talked about today, everyone has gifts. We all don't have the same gifts, and no one should look down on anyone else just because we're different in some way. And yet, unfortunately, all too often, we do, which is a problem.   Freda Uwa ** 41:20 Yeah, that's right, Michael. And that's, it's really sad how the world has turned humans against humans. And that's, that's not the world we want to see. You know, I'll tell you something that's a renowned writer in Nigeria, Chimamanda dice, she spoke about the evil word for love. IBO is my local dialect, my native tongue, and the evil word for love, love is if unanya And that, what that literally translates to is, I see you, so Michael, if I love you, I see you beyond anything else. I see you beyond your abilities, beyond your color, beyond any other identity marker that defines you. I just see your soul. So sometimes I feel like we African language is not fully the English doesn't do the English language doesn't do justice to the weight of our native tongue, right? So that's love seeing humans, seeing who you are, for who you are, nothing beyond that. So that's really, that's, that's the world I look forward to having, for sure. And   Michael Hingson ** 42:36 it is so important that we all look at each other for who we are because one characteristic doesn't define us, blindness doesn't define me, your being from Nigeria doesn't define you. It's part of your experience, but it doesn't define you, and it shouldn't.   Freda Uwa ** 42:57 Yeah, right, yeah, absolutely, yeah. Then   Michael Hingson ** 43:01 we have politicians, and they're all defined by what they do when we can pick on them. So it's okay, that's a smart move. But, but, but really, you know, it's one characteristic or whatever doesn't define us. It is part of our makeup, but it doesn't define us. And I think that's very important, that we really understand that we are the sum of everything that we do and that we are, and a lot of what we do and what we are comes from the choices that we make. And that's why I really like unstoppable mindset, because it's a podcast that really helps to show people who listen and watch that they are more unstoppable than they think they are, and what we really need to do is to bring that unstoppability out in everyone, and if it comes out in the right way, it also means that we learn how to work more closely with each other. And I think it is important that we start having more of a sense of community throughout the whole world. I   Freda Uwa ** 44:04 like that, Michael and I like your tie into the unstoppable mindset, like it's in the mind. Yeah, the seed is planted in the mind, and that's where it blossoms, and it's all the environment you give to that seed. How are you cultivating your thoughts? How are you, what are you feeding your thoughts with, right? So, how are you accepting values and projecting values and all of that? So it's in the mind. And so once the mindset is unstoppable, you can thrive, you can bloom, you can become, you can be established in every sphere that you choose. So that's, that's, that's the goal, really so, yeah, that's the unstoppable mindset for sure.   Michael Hingson ** 44:45 Yeah, it's very important. And I think that we all usually underestimate ourselves, and we need to work on not doing that. We need. To demand more of ourselves about what we do, and if we do that, and the more of that that we do, we'll find that we can go out of our what people call comfort zones, a whole lot more, and we'll find that we can do a lot more than we think that we can.   Freda Uwa ** 45:17 Yeah, and I like that. And to your point, Michael, I also, I also feel like we also need to give ourselves credits for all of what we've been through. Yeah, keep yourself the the empathy, like, take time, take a break, recharge and come back right. Like I said, growth isn't always linear. Sometimes you need to take those pauses and recognize that you need to stop, recharge and then go for it, right? So just give yourself credit for showing up. That's it. That's enough, right? You've shown up, that's enough. You've done the step one. That's enough. Show yourself some empathy, show yourself love, and that's the way it radiates to people around you, for sure,   Michael Hingson ** 46:02 I like the idea of showing yourself love you should and and I mean that, and I know that you do as well. Mean it in a positive way. It doesn't have anything to do with ego and thinking you're the greatest thing in the world since sliced bread, but it is recognizing who you are and showing yourself as much as anything that that love is also a significant part of or ought to be a significant part of your life.   Freda Uwa ** 46:29 Mm, hmm, yeah, absolutely. And show up for yourself. Show up for yourself. Yeah, you can be so many things to so many people, but how about yourself? Right? Don't show up for yourself and let yourself enjoy you as a person, right?   Michael Hingson ** 46:46 Well, I love to say, I used to say I'm my own worst critic, and I've learned that's not the right thing to say. The right thing to say is I'm my own best teacher, because I'm the only one that can really teach me. And I think that's so important to make things positive. And when something happens, it's not so positive, figure out what the issue is and how to address it, but you, but you can do that. We all can do that. Yes, right? So I think it's so important, and you can do that with   Freda Uwa ** 47:15 love as well, right? Yes, absolutely.   Michael Hingson ** 47:19 That's a good one. So you do a lot of work in managing projects and so on. So what? How did you how did you get to be a good project manager? Because that's part of, obviously, what you do. Was it something you were trained to do? You've picked up on. You have a natural talent for it?   Freda Uwa ** 47:35 Yes. So I've got training in project management. And of course, like it's I did events management back in Nigeria. So it's all of that, that training, the experience and, of course, natural talents to knowing how to manage people and little programs. So that's built into the training that I also had. So yeah, it's all of everything, a bit of everything, I would say,   Michael Hingson ** 47:58 What do you think makes a good leader. That's a toughie, I know. Oh, right, Michael, you   Freda Uwa ** 48:05 don't want to do this.   Michael Hingson ** 48:09 This sounds dangerous.   Freda Uwa ** 48:10 I know, right? So, yeah. So you know what I used to say? I try, I try to make people happy, right? But it's a really difficult job to be a leader, really difficult one. But my concept of leadership is showing people how to follow. So my concept is building leaders right modeling the way for people to follow. So a good leader is a servant leader. They are listening. And you're also wanting to build leaders, and that is giving empowering your following to do as you what you've done. So you're showing them you're doing it, and you're ensuring that you're leaving no one behind. So a good leader is leading and moving her team from behind. That's my That's That's the summary of what I would say. But then that doesn't always mean you're making people happy, because I always tell I say this sometimes, that if you want to make everybody happy, you go sell ice cream, you don't want to take a leadership role, because you you might hurt some people, for sure.   Michael Hingson ** 49:27 Well, I think also it's important to to say that good leaders, and you, you mentioned it, train other people and teach other people how to be leaders. I think one of the most important things, and I always said it to every person I ever hired, was I didn't hire you so I could boss you around my hiring you because you convinced me you could do the job I'm hiring you to do. But what you and I have to do together is to figure out how I can add value and. And enhance what you do. And that's really a tricky and challenging thing, because it isn't necessarily something that, as the official leader, if you will, is is best done by me. It's oftentimes better done by the people I hire who observe me and observe all that goes on around us. And who will come and say, here's how I think I can do better with your help, and here's how I how I think you can add value to what I do. And you know, I've hired a lot of people who can't do that. They can't go there. They're just not used to that kind of model. But I do know that the ones who who understand it and who accept it and who follow through on it, those people do really well, because we learn to compliment each other and their skills and my skills, which are different, but can coalesce together to mean that the sum of the parts, or the whole is greater than the sum of the parts, because we work together.   Freda Uwa ** 51:13 That's right, Michael, that's right. And you've said it right there. Like a good leader is only as good you as a leader, you're only as good as your team, right? So you want to make the team work, right? So, yeah, that's, that's, that's my view on leadership as well. What, what's my team doing, and how am I supporting them to to thrive and become,   Michael Hingson ** 51:36 yeah, yeah, that's, that's really important, and I think that's really a big part of leadership. Certainly, leadership has to motivate and and overall coordinate the efforts of what the team does, but the best leaders also know when to let someone else take the lead because they've got better skills in a particular arena or project than someone someone else does   Freda Uwa ** 52:05 absolutely, yeah, yeah, for sure. So,   Michael Hingson ** 52:09 in addition to being the executive director of independent living Canada, what else do you do? What are your other passions or hobbies, or what other kinds of things do you like to get involved in   Freda Uwa ** 52:22 alright, that's fun. I am a red seal endorsed chef. So I cook. I love to cook. That's my escape. I cook for family. I cook for friends. I'm involved in my local community here in Saskatoon, and my local cultural community. So all of that are the things I do, and more. So I am just about publishing my first book I started a long time ago. And so, yeah, I'm also an author at night. And yeah, so yeah, I'm excited about my book. It's called Jollof life, and I'm excited for sure. Yeah,   Michael Hingson ** 53:04 when will it be published?   Freda Uwa ** 53:09 I don't have a date yet, but I will, I will let you know soon enough.   Michael Hingson ** 53:14 So roughly, when do you think it will be published? Just, I mean, is it six months away, a year or three months or   Freda Uwa ** 53:20 I'm thinking, I'm thinking, six months away. Okay,   Michael Hingson ** 53:24 okay, cool. Well, that's exciting. That's exciting that you're, you're working on a book.   Freda Uwa ** 53:32 So do you know what Jollof is? Michael, no, what is that? Tell me. Let me. Let me coach you. So Jollof is it's a dish in Africa. It's, it's a type of rice that is cooked into my tomato, tomato, tomato broth and meat stock. And it's really, really flavorful. It's red, it's rich, and all of that. It's so good that, like I have, I'm a caterer in Nigeria. I know I need to say that when I was in Nigeria, I was a caterer. So if you go to an event, you must have a stand for Jollof rice. So it's really, it's really that good that there is a saying in Nigeria that any party without Jollof rice is just a meeting, right? There you go. It's, that is that good? So I call Jollof right, the queen of the buffet. So it's, it has to be there. It just has to be there. And it's so relevant that there is an online feud amongst African countries of Who makes the best job, right? So it's, that good, right? So I took that idea and turned that into life. What's what life that is, what makes you so relevant at what you do, and that's why I'm I switched that around to Jollof life, right? Just standing out and being the queen of your life, or the. Of your life and owning that space and just being as relevant and and having to dominate your space. So I cooked through a part of the love, right, while writing that book, and I was expressing myself through the Arabs and the flavors and cooking life through that book. So that's what the book is about.   Michael Hingson ** 55:18 Oh, that's exciting. And it makes sense that that's the title. And I kind of figured maybe that was sort of what it was when you said jolla life. But it makes, makes perfect sense, what's your favorite thing to cook?   Freda Uwa ** 55:32 And now, now that you now that you know, then it's Jollof. Of course. It's chill off.   Michael Hingson ** 55:39 What's your second favorite thing to cook. Oh,   Freda Uwa ** 55:42 pasta. Okay. I kind of feel like, I mean, earlier in my blood, right? So I love to cook pasta. That's   Michael Hingson ** 55:52 pretty cool. Do you make your own pasta from scratch or,   Freda Uwa ** 55:57 Oh, I do. I do, yes. So I Buy store bought ones, but I also make mine from scratch too. Yeah,   Michael Hingson ** 56:03 I bet it tastes better when you make it from scratch though. Oh,   Freda Uwa ** 56:07 it's so good. Michael,   Michael Hingson ** 56:10 that's exciting. Well, and your book is coming. So what other things do you like to do besides independent living and and cooking or nutrition?   Freda Uwa ** 56:22 So, yeah, I'm, I'm involved in my local community, cultural community of women, so we are out dancing sometimes, and, you know, having local events. So that's something else that keeps me busy in the weekend. And I love, I love that I'm still, I'm able to to connect with the my culture here in Canada as well. So yeah, those are the things I love, family. I love spending time with my family. That's I've got men in my house and like that. I teach sometimes, and I say that I live with four men, right? So three of those are my boys, and one is my husband. So I take some time to have the boy time. So I'm also, I'm also, I suck myself in that as well. So I do some boy activities. So I, yeah, so yeah, that's my, my downgrade.   Michael Hingson ** 57:13 But you gotta do some girl activities too.   Freda Uwa ** 57:17 That's, that's when I have my me time. Yeah.   Michael Hingson ** 57:20 What's important to do? And the boys probably go off and do their things too. How old are the boys? Yeah, I've   Freda Uwa ** 57:27 got a 14 year old, an 11 year old and an eight year old.   Michael Hingson ** 57:32 Ah, so are boys? No girls, no,   Freda Uwa ** 57:37 none. Yet,   Michael Hingson ** 57:40 there's another project for you. Oh, Michael,   Freda Uwa ** 57:46 whoopee, yeah,   Michael Hingson ** 57:48 I understand. No, I I appreciate that. It's, it's, that's, it's something, well, you have, you've had a lot of experiences. What do you think, or how do you think your overall life journey has made your mindset what it is.   Freda Uwa ** 58:09 Oh, boy, Michael, is I again, I said I spoke about growing and evolving. So that's the mindset. I am not there yet, like I feel like I'm not there yet. Yeah, I'm still I'm still growing and involved evolving. So it's just not being satisfied or settling for nothing short of the best. I don't like to use the word perfection, but I want to keep going and keep pushing and getting better than my just growing and getting better than yesterday. Yeah,   Michael Hingson ** 58:46 going and growing. And that's that's important. Well, with that in mind, if you had the opportunity to do it, what would you go back and tell your 10 year old younger self? What would you tell that 10 year old Frida, and what and more important, if you told her, would she listen? But anyway, what would you tell her?   Freda Uwa ** 59:08 She was loud. For sure she was loud. I know she'll be. She was hyperactive, so that I know, so I will let her know one step at a time you have made huge progress. You have made huge progress. I am so proud of you. I am indeed living your dreams, and I'm hoping that I have checked off most of the boxes that you've always wanted to do. So that's what I would say to my 10 year old, Frida, and I hope that she listens to that.   Michael Hingson ** 59:46 Yeah, that's the trick, of course, is with any of us is to to get the younger of us, or younger people in general, to listen all too often we just think we know everything, and it's so difficult to get people to step back and. It's one of the things that I think we really, collectively as a society, need to do a lot more of, which is at the end of the day, at the end of every day, step back. Think about what happened. How can you improve what happened? Even the good stuff, but especially the things that didn't necessarily go as you planned. Step back and look at them and adopt a mindset that you want to teach yourself how to do it better, whatever it is that that is that has got to be a way that we can help get others and ourselves to listen more than we tend to do.   Freda Uwa ** 1:00:33 Mm, hmm, yes, for sure, and and looking to give back as well. Like, are you coaching and mentoring people. So, yeah, yeah. So if there are any freedoms out there, you can always reach out to people that would speak and leave seeds in your hearts of greatness, like see the good in every situation. Like I did, see a good in the conversation that I I heard about that lady or that woman at the time. So that is a good in every situation you meet, right? So you pick the seed that you want, you want, and then water it and nurture it to grow and grow, you always find,   Michael Hingson ** 1:01:13 yeah, and I think that we, we can do that. We can do a lot more of that than we tend to do, but I think it's important that we we do our best. And you talked about servant leadership, and it's as much about serving yourself and your soul as it is about being a servant leader to other people. Absolutely. And the thing that we never, well, I won't say we never, but the thing that we don't do nearly as much as we probably could, is listen to our own inner voice that probably has the answers we seek, if we would but learn to listen for them. Mm,   Freda Uwa ** 1:01:45 hmm, absolutely, yeah. And I like I like that to your point, serve yourself too, right? So for seven leaders, serve yourself. Listen to yourself, take those pauses, give yourself credit for all your hard work. And you know, sometimes you get that guilt when you want to spoil yourself. I'm like, Okay, this body made this money, right? So I need to take care of this body. So that's, that's, yeah, that's, that's a way to give yourself some credit, like physical treats, yeah,   Michael Hingson ** 1:02:17 yeah, physical treats. And not necessarily overdoing it, but physical treats and and mental treats too. This this weekend is a holiday in the United States, and I know that I'm going to take some downtime just to to kind of relax. I think it's important that we all do that all too often when people go on vacations. I'm sure it's true up there too, but it's so true down here, they go on a vacation, they go somewhere, they do a lot of hiking and a lot of work, and when they come back from the vacation, they need a vacation because they work so hard.   Freda Uwa ** 1:02:51 Oh yeah, tell me about it.   Michael Hingson ** 1:02:55 And it's it's important for us to learn to rest and let our, let our brains recuperate too. Let our, let our mind recuperate. But, you know, yeah,   Freda Uwa ** 1:03:06 it comes I, I needed that. I needed that for sure. It's a long weekend here in Canada as well. Oh yeah, so I'm just going to unplug and take some downtime and recharge, right? So it's needed for sure. It   Michael Hingson ** 1:03:21 is that's that's good. Well, you know this, this has been a lot of fun to do, and I've, I've enjoyed it, and I want to thank you for being on and I want to thank all of you who are listening to us and watching us. We really appreciate you being here. I hope that you've enjoyed what Frida has had to say, if people want to reach out to you and maybe talk with you in some manner or contact you, how do they do that? Hi.   Freda Uwa ** 1:03:47 Oh, so I'm on Instagram and I'm on LinkedIn, Freda Owa , and   Michael Hingson ** 1:03:53 yeah, is UWA, yes,   Freda Uwa ** 1:03:56 UWA, UWA. So that's Frida or right on LinkedIn. And of course, you can reach out to IO Canada website and ask to speak to me. So, yeah. Well, cool. Well,   Michael Hingson ** 1:04:12 I hope people will do that. I hope that everyone has enjoyed all of all of our discussions and your insights today, if you did enjoy it, we would really appreciate you. Wherever you're listening to us, give us a five star rating. We value your reviews and ratings very highly. If you'd like to reach out to me, you are welcome to do so. I'm easy to find. You can email me at Michael, H, I m, I C, H, A, E, L, H, I at accessibe, A, C, C, E, S, S, I, B, e.com, so I'd love to hear from you. If you know of anyone who you think would be a guest, that we ought to have an unstoppable mindset. Freda to you as well. If you know anyone who ought to be a guest, we want to hear from you. Just before we started this podcast, I received an email from someone who said, I got a great guest. You said, If. I found anyone that I should reach out, and I'm reaching out. I got this great person. So we hope that all of you will will do that, and that you will stick with us, and you'll be back next week to listen to more of or our next episode, more of unstoppable mindset. We really appreciate your time and value the fact that you're here. So once again, Freda, I want to thank you for being here. This has been a lot of fun, and we ought to do it again sometime,   Freda Uwa ** 1:05:28 for sure. Thanks for having me, Michael, and good luck, and very well done. Job with the unstoppable mindset.   **Michael Hingson ** 1:05:40 You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you'll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you're on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you're there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit www.accessibe.com . AccessiBe is spelled a c c e s s i b e. There you can learn all about how you can make your website inclusive for all persons with disabilities and how you can help make the internet fully inclusive by 2025. Thanks again for Listening. Please come back and visit us again next week.

Feb. 28, 2025 - We talk with Alex Thompson and Blaise Bryant of the New York Association on Independent Living about the subminimum wage allowed for people with disabilities, funding in the budget to keep New Yorkers independent, and the controversial transition of a home care program.

Jan. 27, 2025 - By April, the state is scheduled to transition the administration of a popular home care program utilized by more than a quarter of a million New Yorkers. We get an update on the Consumer Directed Personal Assistance Program changes from New York Association on Independent Living Executive Director Lindsay Miller and AIM Independent Living Center CEO René Snyder.

What, you may ask, is TSC. When I first met our guest, Kari Luther Rosbeck, I had the same question. TSC stands for tuberous sclerosis complex. As soon as Kari defined the term for me it struck a nerve close to home for me. My great nephew actually has tuberous sclerosis complex and was first diagnosed with this rare disease when he was but a child. My conversation with Kari was far reaching and quite educational for me as I suspect it will be for you.   TSC affects some fifty-thousands persons in this country and about 1 million around the world. The TSC alliance, founded in 1974, has worked to promote support, research and the dissemination of information about this rare disease.   Kari has been the CEO for many years. She began with the organization in 2001. While her main interest growing up was in being an actress as she says, “living in New York City means that you work while developing an acting career”. In Kari's case, she found another interest which was fundraising and being involved in the nonprofit world.   My conversation with Kari is quite enjoyable and, as I said, quite educational. I am sure you will find much invaluable information in this episode. At the end of our time together Kari will tell us all how we can become involved and help the TCS Alliance. I hope you will find ways to support this effort as what the organization does goes far beyond what you might think.       About the Guest:   Kari Luther Rosbeck, President and CEO, TSC Alliance Kari has made it her life mission to use her 35 years of nonprofit and volunteer management experience to help create a future where everyone with TSC has what they need to live their fullest lives.  She has served as President and CEO since November 2007 and previously held progressive leadership positions with the organization since 2001. Kari is responsible for the overall management and administration of the organization including strategic planning, implementation of organizational strategies and evaluation of results to ensure the TSC Alliance meets its mission. During her tenure, the TSC Alliance established a comprehensive research platform fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. Because of her leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment, including pivotal trials that have led to three FDA-approved drugs specifically for TSC. In 2019, the organization launched a Research Business Plan with the goal to change the course of TSC for those living with it today and for generations to come paired with an aggressive fundraising campaign leading to more than $16 million raised. Since joining the TSC Alliance, the organization has grown from a $2.1 million annual operating budget to $10 million in 2022 and is heralded with top ratings by watchdog organizations. Kari graduated with a BA degree in Theatre from the State University of New York at Albany and upon graduation founded a theatre company with fellow graduates in New York, NY.  After the loss of her first child, Noell, to sudden infant death, she dedicated her career to helping other families. Kari is the proud mother of Trent, Bradey, Wynter and Rhys and grateful to her husband Chris for his unending support. When not working, she enjoys traveling, playing golf and being an avid Minnesota Vikings fan. Read Kari's Profile in Success.   Ways to connect with Kari:   Facebook: https://www.facebook.com/tscalliance; @krosbeck Instagram: https://www.instagram.com/tscalliance; @karirosbeck LinkedIn: https://www.linkedin.com/company/697362/admin/; @kari-luther-rosbeck-ba24805/ X: https://twitter.com/tscalliance; @KariRosbeck Threads: https://www.threads.net/@tscalliance Website: www.tscalliance.org     About the Host:   Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.   Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards.   https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/   accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/   https://www.facebook.com/accessibe/       Thanks for listening!   Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below!   Subscribe to the podcast   If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can subscribe in your favorite podcast app. You can also support our podcast through our tip jar https://tips.pinecast.com/jar/unstoppable-mindset .   Leave us an Apple Podcasts review   Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.       Transcription Notes:   Michael Hingson ** 00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us. . Well, welcome once again to another episode of unstoppable mindset where inclusion, diversity and the unexpected meet, and I bet we get to do a bunch of all of that today. Our guest is Kari Luther rosbeck, and Kari and I met through Sheldon Lewis from accessibe. Sheldon is great at finding folks for us to get to chat with. And when I started learning about Kari, one of the things that I kept reading was a term TSC, and I didn't know what TSC was. So when Kari and I first met, I asked her about TSC, and she said it stands for tubular sclerosis complex, which immediately struck a nerve with me, because I have a great nephew who has tubular sclerosis. And as it turns out, his parents have actually and had actually attended an event where Kari was and then just this past March or April or whenever, and you can correct me, Kari, but they went to another event, and my other niece and nephew, Tracy and Charlie, attended, as I just told, Kari, I'm very jealous they didn't let me come along, but that's okay. I stayed home and slept. But anyway, Kari, I want to welcome you to unstoppable mindset. It's really great that you're here, and I want to thank you for taking the time to be with us. It   Kari Luther Rosbeck ** 02:42 is such an honor. Michael and I love talking with your family, and it was so wonderful to have them with us at comedy for a cure this year. Well, it   Michael Hingson ** 02:53 it was really fun to hear about the event from them, and I'm glad that that they all enjoyed it. And of course, Nick is is a person who deserves all the attention and help all of us can give. He's had tubular sclerosis, been diagnosed with it for quite a while, and is actually, I think, beating some odds, because some people said, Oh, he's not going to last very long, and he's continuing to do well. And just don't ever get him into a conversation about sports and the Dodgers, because he's a Dodger fan, okay,   03:24 as he should be. By the conversation.   Michael Hingson ** 03:28 Well, he is a Dodger fan as he should be. I just want to point that out, yes, yes, for those of us here. Well, Nick, Nick probably   Kari Luther Rosbeck ** 03:36 was, well, when Nick was diagnosed, we had a very different prognosis for TSC back then.   Michael Hingson ** 03:45 Well, yeah, I know, and it's like everything with medicine, we're making a lot of advances. We're learning a lot, and of course, we're paying a lot of attention to these different kinds of issues. I mean, even blindness, we're paying a lot of attention to blindness, and we're slowly getting people it's a very slow process, but we're slowly getting people to recognize blindness isn't the problem. It's our attitudes about blindness that are the problems. And I think that's true with most things, and I think that if people really thought about Nick and and felt, well, he can't do much because of they would recognize he can do a whole lot more than they think he can, 100% which is really important. Well, let's start a little bit about you. And why don't you tell us about the early Kari growing up and all that and how we got where we are, well, thank   Kari Luther Rosbeck ** 04:43 you for the opportunity to do that. My middle name is Lacher. That's also my maiden name. My dad and mom were in education, primarily. My dad also dabbled in some politics. We moved around. Quite a bit when I was a child, I think before seventh grade, or before I was 18, we knew 13 times so that really, you know, you become adaptable because you have to be and inclusive, because you have to be because you're in all of these new environments. From the time I was six years old, I wanted to be an actress. I wrote my own plays, I organized a neighborhood, I think, when I was seven, and we performed a play I wrote. And that's what my degree is in, in theater. And Michael, as you probably know, when I was 27 I had my first child, Noel, who unfortunately passed away from sudden infant death, and it completely changed the rest of my life. From that point forward, I really wanted to do something that impacted families, so they never had to experience the type of grief that I went through at a very somewhat young age. And then from from that point, I took all of the skills that I'd been using in the work life, not theater, because I lived in New York, and you have to work to live, so you could do theater before my then husband and I moved to Minneapolis, but I had always done fundraising. I had always done administration, so I just kind of naturally took in all of those skills, community and grassroots building. I went to work for the American Refugee Committee in Minneapolis, and then from there, worked at international service agencies, which is a workplace giving umbrella organization representing all of the premier international organizations. And my job there, as a regional director was to go into workplaces and give two or three minute presentations and convince people to give to international causes. My favorite was I was pregnant. I had a pregnancy kit, what they would give people in developing the developing world, where you would have a razor blade, a string, a plastic sheet, and that's how they delivered babies. And that was a really effective presentation, as you can imagine. I got to the TSC Alliance because my boss at international service agencies became the CEO of the TSC Alliance in early 2000s and he brought me over to start our volunteer outreach program, build our grassroots movement, and from there, I definitely got involved in fundraising. The admin side was interim CEO, and then CEO,   Michael Hingson ** 07:55 well, gee, so so many questions. Why did you guys move so many times?   Kari Luther Rosbeck ** 08:01 Well, my dad got his PhD and became dean of students at Arkadelphia State University, or Henderson State University in Arkadelphia, rather. And he did great, but he loved politics, and he had the opportunity to become the executive director of the Republican Party of Arkansas when it wasn't cool to be a Republican in Arkansas, and that really was his passion. And from there, he became a he led a congressional campaign for a candidate in Littleton, Colorado, and when that candidate didn't win, he realized that he really needed to have a more stable life for his family. So we moved to Knoxville, Illinois, and he became a vice president at a community college, and from that point forward, that was his his career. We moved to upstate New York. I'm leaving out a few moves just to make it simple. We moved to upstate New York my freshman year in college, where he became a President of Community College there, and then ultimately, he ended back in his hometown, in Mattoon, Charleston, Illinois, where he led the local community college until he retired, and the Student Union at Lakeland College is actually named after my   Michael Hingson ** 09:30 father. Wow. So is he still with us today? He is not.   Kari Luther Rosbeck ** 09:34 He passed away from idiopathic pulmonary fibrosis in 2017   Michael Hingson ** 09:38 Well, that's no fun. How about your mom? She is, she   Kari Luther Rosbeck ** 09:43 still lives in that soon. Yep, she is the matriarch of our family. That's for sure.   Michael Hingson ** 09:50 A lot of moves. Needless to say, I wonder what your father would say about politics today, it started to be different in 2016 and. 2017 but I wonder what he would think about politics in general. Today, I   Kari Luther Rosbeck ** 10:04 am not sure. I have wondered that question a lot. The one thing my dad was always great at, though, was the ability to see balanced viewpoints, and it's something I always loved and respected about my father, and   Michael Hingson ** 10:19 I think that's important. I think people really need to do more of that. And we just, we're not, we're not seeing that, which is really scary. We're not seeing it on so many levels, not just politics. But, you know, we don't get into politics much on unstoppable mindset, because, as I love to tell people, if we do that, I'm an equal opportunity abuser anyway, and and I, and I'm with Mark Twain. Congress is that grand old benevolent asylum for the helpless. So you know?   Kari Luther Rosbeck ** 10:48 Well, I will say this. My dad taught me how to be an advocate from a very young age. Yeah, what it means to not be afraid to use your voice. That's the best thing we can get out of politics, that using your voice for the greater good is one of the most important things that you can do. The   Michael Hingson ** 11:10 thing that I think people are forgetting today is they love to use their voice, but they don't love to use their ears. Yes, which is another thing, but I I hear what you're saying. I joined the National Federation of the Blind, which is the largest blindest consumer organization in the country, and I joined in 1972 when I was a senior in college, and learn from experts about being an advocate. And I think it's really important that we have advocacy. And the value of really good advocates is that they are able to look at all sides of an issue and really make intelligent decisions and also recognize when it's time to maybe change as things evolve in terms of views. And we just don't see any of that today. People say I'm an advocate. Yeah, well, without thinking about it, and without really looking at the options, and without looking at stands, it's just amazing how people, as I said, use their voices, but not their ears today. I agree. Yeah, it's, it's, it's a tough world, and it's, it's a challenge. I read an article about a year ago in the New York Times all about how we're losing the art of real conversation, which is why this podcast is so much fun, because we do get to converse.   Kari Luther Rosbeck ** 12:36 That's right, I I'm so excited to be with you today.   Michael Hingson ** 12:40 Well, so you got into nonprofit, in a sense, pretty early, and you've certainly been involved at reasonable levels for now, 23 years after September 11, I worked at Guide Dogs for the Blind for six and a half years, as well as being a public speaker. But loved working in the nonprofit sector, although I had a lot of fun with some of the nonprofit people, because what I would constantly advocate, if you will, is that development in the nonprofit world is really just no different than sales. Instead of selling and making a profit, in a sense, you're selling to secure donations, but it's still sales. And people would say, Oh no, it's totally different, because nonprofit is just totally different than what you do if you're working with a company and selling for a company. And I'm going, I'm not sure it's that different.   Kari Luther Rosbeck ** 13:40 Well, what I think is that you're selling hope and right? It's all about relationships. But unlike widgets, we have a lot of different programs that have created such progress, hope and support for the tuberous sclerosis complex community. And I really enjoy talking about what those programs help make possible for people like your great nephew, Nick well   Michael Hingson ** 14:12 and and it's important to do that. I The only thing I would say on selling widgets, as opposed to hope, is if you talk to Steve Jobs or Bill Gates, they would say that widgets very well could also be a mechanism to to move toward hope and dreams. And so again, I think it's just, it's it's all using the same techniques, but different things. I tell people now that as a keynote speaker, I think it's a whole lot more fun to sell life and hope and dreams than it is to sell computer hardware.   Kari Luther Rosbeck ** 14:54 But you're right about computer hardware, and for instance, wearables that are. Really making a difference in some of the breakthroughs that we see today. So under percent correct.   Michael Hingson ** 15:05 Well, tell us a little bit about the whole tubular sclerosis complex Alliance, the TSC Alliance, and you got started in it. And what was it like, if you will, back in the day, and it's not a great term, I'm telling you, I I'd love to to have fun with that, but what it used to be like, and what it is now, and what's happening, sure.   Kari Luther Rosbeck ** 15:27 So when I started June 18, 2001 nearly 23 years ago, the organization had about seven employees. Today, we have 23 we in those days, we knew what the genes were in TSC, and soon after I came to work, we discovered how the TSC genes impact the underlying genetic pathway. That was awesome, because that led to some key clinical trials and ultimately an approved drug. What I say about the early days is we were we did a beautiful job of holding people's hands, offering them support, but there were no medications that really directly impacted TSC that were FDA approved,   Michael Hingson ** 16:21 maybe it would help if we actually define what TSC is. Yes, of   Kari Luther Rosbeck ** 16:25 course, let's start with that. Tuberous sclerosis complex is a rare genetic disorder that causes tumors to grow throughout the body, the brain, heart, kidney, liver, lungs. It is the leading genetic cause of epilepsy and one of the leading causes of autism. Epilepsy impacts about 85% of people with TSC autism, about 50% one in 6000 life first will have TSC. TSC impacts about 50,000 Americans and a million people worldwide, and it's variable. No two people are exactly the same, not even identical twins. So people can have mild cognitive impact. They might have moderate or severe. People can have mild cognitive impact, but at some point in their life, perhaps needing a lung transplant. TSC is progressive. So for women of childbearing age, lymph angiolio, myomatosis, or Lam can impact the lungs. We can see kidney growth of tumors in the kidneys that can impact quality of life. So it's variable, and some of our adults live independently. Others require more complex care. It's usually diagnosed in childhood and in infancy, either in utero, where you can see two or more heart tumors in a regular ultrasound. Sometimes you're diagnosed after birth, when a baby begins having seizures. Some people aren't diagnosed till they're teenagers with the appearance of angiofibromas or skin tumors on their face. And occasionally, people are diagnosed when they're adults. They have kids of their own, their children are diagnosed with TSC, and then they are subsequently diagnosed with TSC. So it runs the gamut.   Michael Hingson ** 18:31 So it is something that very much is or can be genetic. It is genetic.   Kari Luther Rosbeck ** 18:38 Yes, it's caused by mutations in one of two genes, TSC one or TSC two, on the ninth or 16th chromosome that controls cell growth and proliferation, which is why you see the appearance of non malignant tumors. And that is what impacts all the organ systems. Yeah,   Michael Hingson ** 19:00 and it is not a fun thing, needless to say, to be around or to have, and it's not something that we have control over. Nick, I know does live with his parents. I don't know whether Nick will ever be able to live independently. He does have seizures and sometimes, and it's not predictable, although he's doing a little bit better job of controlling them with medication, but he'll probably always live with someone. But what a wonderful person to have around. Yes,   Kari Luther Rosbeck ** 19:35 he is definitely enjoyable. And that's, I mean, that's the thing about TSC. We have we have independent adults. We have kids, we have semi dependent adults. We have dependent adults. The one thing about our community and our organization is this is a home for everybody.   Michael Hingson ** 19:58 So when did the. See Alliance actually first begin   Kari Luther Rosbeck ** 20:01 1974 so it started with four moms around a kitchen table in Southern California, and two of those four moms are still in touch with the TSC Alliance. I talked to two of our Founding Moms quite frequently. They are very inspirational. They had this tremendous foresight to think about what the community needed or what they would need in the future. So our organization, the TSC Alliance, we actually have a new vision statement as of this year. So our vision statement is the TSC Alliance wants to create a future where everyone affected by TSC can live their fullest lives, and our mission statement is to improve quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support. What so some of the ways that that we do this, as you know, is to fund and drive research, to empower and support our community, to raise awareness of TSC, because we want to provide the tools and resources and support for those living with TSC, both individuals and caregivers. We want to make sure that as an organization, we are pushing research forward by a research platform that we've helped create through the years, and we want to make sure that people are diagnosed early and receive appropriate care. So it's really important to us to raise awareness in the general public, but also among the professional community.   Michael Hingson ** 21:52 So this is the 50th anniversary of the TSC Alliance. Yes, it is. And I would dare say, based on what you're talking about, there's a lot to celebrate.   Kari Luther Rosbeck ** 22:04 We have so much to celebrate. Michael, there's been so many accomplishments over the years, from the creation of our professional advisory board early on that provided guidance to the organization to today, we have three FDA approved drugs specifically to treat TSC as an organization in 2006 we started the very first natural history database anywhere in the world that still exists today, with over 2700 participants, and that allows us to really understand how TSC progresses through a lifetime, and then we, as an organization, in partnership with a group of our TSC clinics, helped with the first preventative clinical trial for epilepsy in the United States, and that was really to look at Babies with TSC to treat them before the first seizure, to see if we can prevent or delay epilepsy.   Michael Hingson ** 23:07 So So tell me a little bit about the the three different drugs that are available. What? What do they do? Without getting too technical, how do they work, and so on, because, obviously, the tumors are there. And so what do the drugs do to address all of that   Kari Luther Rosbeck ** 23:24 great question, the first approved drug for TSC everolimus is an mTOR inhibitor, mammalian target of rapamycin. So if you remember I talked about the two TSC genes working as a complex to control the genetic underlying genetic pathway. Well, that underlying genetic pathway is mTOR, and there happened to be a class of drugs that was developed to help with organ transplant and anti rejection. Ever roll. This is a synthetic of rapamycin that was found on rap a rap the islands, rap immune island. So what that particular drug has been approved for, and how it works in TSC is to shrink certain types of brain tumors to shrink tumors in the kidneys, and it's also used as adaptive therapy for seizures associated with TSD. So what we know is it is extremely effective, but if you go off the medication, the tumors will grow back. So it's not a cure, but it's moving in the right direction, right second drug that was approved is the first FDA cannabinoid drug, Epidiolex, and that treats seizures associated with TSC. The third approved drug is a topical rapamy. So it treats those skin tumors on the face. I   Michael Hingson ** 25:04 don't know. It's really interesting. Medical science comes up with all these terms that are tongue twisters. How do they do that? You're 100% correct. Oh, it's a fun world. What's on the horizon, what kinds of things are coming that will kind of either enhance what they do or other sorts of medications? Yeah,   Kari Luther Rosbeck ** 25:28 thanks for asking that. So I think for us, in 2019 we put together a really aggressive research, research business plan, and our goal with this was to ultimately the vision change the course of TSC, and so we have a research platform that really helps accelerate drug development. So we fund research grants or young investigators to keep them interested in the field and to generate new ideas. We have a pre clinical consortium where we work with a contract research organization. We've licensed different mouse models that can try drugs for both epilepsy and tumor growth and behaviors, and so that is really built a pipeline of new potential therapies for TSC we also have this clinical research consortium that we work with. We have 74 TSC clinics across the country, of which 17 are centers of excellence, and we're working with our TSC clinics and centers of excellence to when drugs come out of the pre clinical or when companies come to us and they want to institute clinical trials, we will work with them to be in touch with our clinics, to educate our community about what clinical trials are out there, so they know what questions to ask or how to appropriately weigh risk benefit, so that's a really important part of our platform. We also, I mentioned earlier, a natural history database to help us understand how TSC progresses through a lifetime, but also a bio sample repository, so we'll understand why TSC is so different person to person. So with all of those tools working together, what we want to do is ultimately determine how to predict an individual's risk for the many manifestations of TSC so if we knew who was at risk, say, for epilepsy, and we could intervene to delay or prevent epilepsy. Could we do the same with kidney tumors? So that's what I mean about predicting and prevention. We would like to develop biomarkers to help accelerate outcome measures and clinical trials. We would love to have an intervention early on. Remember, I said that we helped start the first preventative clinical trial for epilepsy. You need an intervention to get on the newborn screening panel. If we could be on the newborn screening panel and identify babies early, that is the greatest way to change the course of the disease. Of course, we obviously want to test more compounds in our pre clinical consortium to make sure that we are building that pipeline for new and better drugs in the future, and we definitely want to develop patient reported outcomes. So how does this disease impact quality of life for individuals and families living with it, so that we'll know in the future, if there are different potential treatments, does it impact or improve their quality of life? And the FDA looks at patient reported outcomes quite seriously, so we want to build that for future clinical trials and clinical studies. Finally, one of the biggest unmet needs in TSC is what we call TSC associated neuropsychiatric disorders, or taint This is an umbrella term for brain dysfunction that includes everything from sleep problems to depression, anxiety, aggressive behavior, executive functioning, how people learn. So it is definitely an umbrella term, and almost everybody is impacted by tanned in some way that are living with TSC. So we want to better understand who might be at risk for which parts of tan so that we can intervene and improve quality of life.   Michael Hingson ** 29:55 Something that comes to mind we hear people talking. Think a fair amount today about gene therapy and how all of that might work to cure various diseases and so on. Is there room for that in Tse, since especially it's caused by two specific genes?   Kari Luther Rosbeck ** 30:14 Great question. We actually are working with some gene therapy companies in our pre clinical consortium looking to see if we can intervene that way.   Michael Hingson ** 30:26 It's a few years off, yeah, I can imagine, but it would be an interest if, if it truly can be done, since you're clearly able to tell that there are specific genes that are that are causing this. It's an interesting concept, given the state of science today, to think about whether that could lead to, even if it's not immediate, but later, cures for TSC and other such things, and   Kari Luther Rosbeck ** 30:57 we might start with organ specific gene therapy. For instance, if we had gene therapy early on in the brain, again, thinking about preventing seizures from ever developing, if we were able to implement gene therapy in the kidneys so or lungs so women never develop lamb, that would be a huge breakthrough. Yeah. So thinking about how that might work and how that could impact our community is tremendous,   Michael Hingson ** 31:28 I would think so. And I would think if they are able to do some work in that regard, it would be very revolutionary. And obviously, the more we learn about gene therapy overall, the more it will help with what medical science can do for TSC as well. That's right. So what does the Alliance do for families and individuals? What kinds of specific things do you all do?   Kari Luther Rosbeck ** 31:57 Yeah, we have   32:00 developed 14   Kari Luther Rosbeck ** 32:01 community regions across the country where we work with our volunteers. So they'll in their regions, host community educational meetings, walks, where they bring the community together, which is hugely important offer peer to peer support. So that is on a regional level. On our team, we have support navigators, so people that are available to take calls, emails, texts to really help when people either receive a new diagnosis, will spend a lot of time making sure they get to the right clinics, resources, support systems, or when a new manifestation arises, or if people are having some access to medication or access to care issues, we have a TSC navigator so that is a proactive online tool that people can log into and that will really take them through the journey in a way they want to gain information. So it's really written in in small bites, so that if people want more information, they can dive deeper. That's hugely important for individuals impacted. We have regular webinars, regional conferences, and every four years we hold a World Conference. Well, we will bring in experts from all over the world to cover the many manifestations of TSC so people are informed to make the best decisions for them and their families. They'll also talk about new clinical trials or new research on the horizon, or they're talk about social service tools that are really important for living or guardianship or financial planning, so those things that aren't just medical, but really impact people's lives.   Michael Hingson ** 33:57 So today, what, what do you think? Or how would you describe, sort of the social attitude toward TSC and people with TSC, or is it, is it more manifested in Well, this guy has seizures and so on, so TSC doesn't directly tend to be the thing that society views.   Kari Luther Rosbeck ** 34:22 That's a great question. And because TSC is so variable, I'm going to say to you, it's different person to person. One of the things we did a few years ago was create these little business cards that described what TSC was. So if somebody's out at a restaurant, they might hand it to their waiter or waitress to say, We want you to know that our for instance, our child has TSC and so you understand what you might see as you wait on us. For example, I still think that for those that are more severely in. Acted. I talked about tanned and some folks with more severe behaviors. You know, our society, it's attitude, right? You talked about that in your presentation of diversity to inclusion, we need to be much more understanding when a family is trying to handle a seizure or or behaviors and not pass judgment on that family, let the family handle that situation. So I would just say it's individual to individual, but one of the most amazing experiences, as is at our world conferences, where everybody can just be. And everybody understands that TSC is variable. And you might have a child over here with a seizure dog. You might have an adult group in one corner talking and dancing, but everybody comes together, yeah,   Michael Hingson ** 35:58 yeah. And that's really important to do, and that's you raise a really good point. Obviously, dogs are learning to be better at seizure detection. And I was going to ask about that, because I assume that that certainly can play into helping people who have seizures, who have TSC.   Kari Luther Rosbeck ** 36:18 That is absolutely correct earlier. You asked about what it was like early on, we didn't have a lot of seizure dogs at our early conferences. That's something that really has been happening after, say, 2010 we've definitely seen a lot more seizure dogs be trained and really be helpful to families.   Michael Hingson ** 36:39 Yeah, well, and we have come so far in terms of training dogs to be able to detect seizures and detect so many things. One of my favorite stories, and it's not a seizure detection as such, but one of my favorite stories, is about a Portuguese water dog who was a show dog, but he or she, rather, was also trained to do cancer detection. And the owner, who was very competitive in doing show dog type things, as well as had started a company or a facility to deal with cancer detection, took his dog to the show, to a dog show. And every time the dog got near this one judge, it just laid down. It would not perform, it would not work. And so needless to say, this national champion didn't do very well at that show. And the guy couldn't figure out why. And he got home, and he suddenly realized, oh my gosh, I had taught the dog to lay down whenever it detected cancer, because you don't want to do something dramatic, right? And so he called the woman who was the judge, and he said, Do you have cancer? And she says, No, I don't have anything like that. Then he said, Well, you might go check that out, because and he told her, this was like a Monday when he called her, and Friday she called him back, and she said, I took your advice. And it turns out I have early stage breast cancer. We caught it in time, and it's all because of your dog.   Kari Luther Rosbeck ** 38:04 Oh my gosh, Michael, what an amazing story   Michael Hingson ** 38:10 it is. You know, we we really underestimate our dogs. I know that the first diabetic dog was a dog who who kind of learned it on his own. His person had occasional insulin reactions, and the dog became agitated. And finally, the guy realized, oh my gosh, this dog knows what I'm going to have an insulin reaction. And that led to dogs for diabetics, which is another, of course, sort of same thing that the dogs really can learn to do so many things today.   Kari Luther Rosbeck ** 38:44 Yes, yes, they can.   Michael Hingson ** 38:48 So there's always room for dogs. So we talked, I think, in sort of terms, about your the the whole research platform that you all have developed tell us more about the research platform and what it is and where it's going.   Kari Luther Rosbeck ** 39:06 Well, I definitely talked about all of the tools within our research platform. I think we're certainly taking a deeper dive into all of the tools that that we've developed, when we think about, for instance, our bio sample repository, one of the things we're doing right now is whole genome sequencing. Why? Because we're hoping with whole genome sequencing, we'll understand if there are modifier genes. Are there other things at work that makes some people more severe than other others, and then ultimately, what we'd love to learn is what medications might work best on each individual or personalized medicine, so often in TSC with seizure medications, people end up on a cocktail. We would rather avoid that, right? Wouldn't it be nice to get the medication right the first time? That's really what we are hoping for with our clinical research consortium. Right now, we're doing a couple of quality improvement studies, so one of them is around suit up or sudden, unexpected death from epilepsy, and really understanding the conversations that happen between a physician and a patient or a caregiver, and why aren't those conversations happening in TSC or when are they happening? Because we want to create change so that parents know the risks, or individuals understand the risks, and can they change their behavior to mitigate some of those risks? The other thing that we are doing is we started a reproductive perinatal Health Initiative. This came out of our 2002 world conference because we heard from a bunch of adults that this was a gap for TSC. So TSC is variable. We have some independent adults that may want to start a family someday, but we have no no consensus guide guidance, to guide them in making those decisions. So we put together a group of experts in maternal fetal health, pulmonary nephrology, imaging genetics, to come together to first talk about what are risk stratifications, both for women that are may experiences complications in pregnancy. What are those? What's a risk stratification for each individual? Also, how do we handle perinatal health? How do we care for fetuses of women with TSC, or fetuses where they have been diagnosed with TSC, and what are those recommendations and steps? So that's a real focus for us at our organization, really filling the gaps where those exist. So that's a couple of the things that that I would mention.   Michael Hingson ** 42:16 An interesting question that comes to mind, do you see prejudices or misconceptions that cause difficulties within medical science. And I ask that because I know from a blindness standpoint, so often, when a person goes into an ophthalmologist because they're having eye problems, they go in and the doctor will say, eventually after diagnosis, well, you have retinitis pigmentosa, you're going to go blind. There's nothing I can do, and literally, just walk out of the room without ever dealing with the fact that this person can still be a very normal person. Do you see any of that kind of stuff in the world of TSC so   Kari Luther Rosbeck ** 42:56 early on, less today, but we still hear about it when people are handed the diagnosis of TSC, they it could be very cold. Physicians would say, your child will never walk, they'll never talk, they'll never live a normal life. That's horrible, like you're taking away that hope. And that may not be the case for each individual with TSC, I think some of our families, when their infants begin to have a devastating type of seizure called infantile spasms that can look just like a head nod, sometimes they are misconstrued for indigestion or startle reflex, and They try to get care for their baby, they're told that they're just being paranoid and crazy. It's nothing, but the it's up to the parents right to continue to advocate, because they know something is not right and that that is the right course of action. And then for adults, I think sometimes our adults living with TSC really struggle with adequate care. We've done a really good job of pediatric care specifically for TSC, but as a country, we could do a lot more for those with developmental disabilities, including TSC and providing adequate transition from adult care, these are the places that I see prejudice or roadblocks put up for our families.   Michael Hingson ** 44:33 How do you teach or what do you do to teach parents and adults, especially about being stronger advocates.   Kari Luther Rosbeck ** 44:43 Well, first of all, we tell them to trust their instincts and trust their voice and to not give up if you're hitting a roadblock. One place call us. Maybe there are other other clinical care that we can provide for you. Yeah. If you're having an issue at work, it's really important that you get the right support to advocate for yourself, but to never, ever give up, ever give up.   Michael Hingson ** 45:11 Yeah, that's really, of course, the important part, because ultimately, and I think it's true for most all of us, we know ourselves better than anyone else. And as parents, we know our children better than anyone else, and certainly should never give up and work very hard to be strong advocates to support what their needs are and support them to grow and advance.   Kari Luther Rosbeck ** 45:36 That's exactly correct,   Michael Hingson ** 45:41 and it needs to happen a whole lot more, because all too often, I can imagine hearing people say, well, it's nothing, it's just your it's your imagination. Well, no, it's not, you know, but we see way too much of that kind of thing happening in the world. So it's great that that you're able to do so much. What about in the in the professional world, or in just dealing with people and their lives? What? What kind of things are you able to do to, let's say, help support somebody who wants to go out and get a job?   Kari Luther Rosbeck ** 46:21 Sure? We point them to local resources that might be an expert in that. We also have navigation guides that might help them, that are a supplemental resource to our TSC navigator. We have adult topic calls and adult open forums so that they might also get guidance and advice from their peers that have walked that journey. So those are some of the resources that we will help people who want to get a job   Michael Hingson ** 46:55 do Centers for Independent Living help.   Kari Luther Rosbeck ** 47:00 Are you familiar with those? No, I'm not familiar. Sorry, I'm not familiar. So the   Michael Hingson ** 47:04 CIL system is a system of independent living centers. It really started, I don't know, but I think in Berkeley, it's centers that teach and advocate for the whole concept of being able to live independently, and deals a lot with physical disabilities, and I'm not sure how much the developmental disability world interacts in the CIL it may be a lot more of a physical thing than anything else.   Kari Luther Rosbeck ** 47:32 Well, always great to have new resources that we can share with our community. It's worth   Michael Hingson ** 47:38 exploring Absolutely, because it could very well lead to something that would be helpful, not sure, but it's always worth exploring. The arc is   Kari Luther Rosbeck ** 47:47 another organization I was gonna ask about that frequently. Yes, we've, we've had a partnership with the arc in the past. Many of our community regions obviously work with local arc chapters. It is a partnership that we truly value, and they have a ton of resources that are available for individuals, seeking jobs, seeking Independent Living, seeking so or housing for families. So we don't need to replicate what somebody is already doing. Well, we will partner with that organization,   Michael Hingson ** 48:25 and that makes sense. There's no sense in replicating. It's all about collaborating, which makes a lot more sense to do. Anyway,   Kari Luther Rosbeck ** 48:33 exactly we agree.   Michael Hingson ** 48:36 Well, so what are so, what are your your sort of long term goals from here? Oh,   Kari Luther Rosbeck ** 48:45 long term goals from here? Well, we want to continue to improve quality of life for everyone. We want to make sure that there is adequate transition between childhood and adult in terms of medical care, independent living, or housing or schooling, or whatever that transition may employ, we really want to make sure that we continue the pipeline of new treatments. We want to drive towards a cure. We want to support and empower every family living with TSC. One of the things that we've really been able to do because of advocacy, is to grow the TSC research program at the Department of Defense. So this is a congressionally directed medical research program. There's been an appropriation for TSC since fiscal year, 2002 and cumulatively, 221 million has been appropriated for TSC research. We want to continue to grow that. But on a state level, we've also had some success in growing state funding for. TST clinics in particular states, and for TSC research at those institutes. So over 5.7 5 million have been advocated, have been appropriated from the states of Maryland and Missouri and Michigan and Alabama. So very excited about continuing to grow that that program, as I mentioned, I think getting on the newborn screening panel would be a game changer for TSC, complete game changer. And we want to continue to grow our advocates and grow those that are available as leaders in their communities to offer support to others.   Michael Hingson ** 50:39 So the funding comes through the Department of Defense. Why is that?   Kari Luther Rosbeck ** 50:44 It is a program that is high risk, high reward. You have to have some military relevance. So so for TSC, obviously, our connection to epilepsy and our mass models that are used for developing epilepsy medications, those mass models can also be used to look at traumatic brain injury. So that's a connection. It's high risk, high reward. So understanding the underlying biology of TSC and finding that genetic pathway that I mentioned was one of the hallmark achievements early on of this program. So it's, it's, it is so amazing. The early gene therapy work for TSC started at the TSC research program at the Department of Defense.   Michael Hingson ** 51:33 And I gather you're probably getting a lot of really good support from DOD. So   Kari Luther Rosbeck ** 51:38 it doesn't come to the TSC Alliance, we advocate to make that funding available to researchers around the country. So we think of that as part of our mission for driving research. But we don't see a dime of that. Those dollars, they all go through Fort Detrick and through the Department of the Army, right? The other cool thing, though, Michael is we nominate consumer reviewers, so people that help advocate for these funds also sometimes get a seat at the table to say what research would be meaningful for their lives as a consumer. And that is a really cool, unique thing that happens.   Michael Hingson ** 52:21 Yeah, well, and I was asking about support, I was thinking more of their they're perfectly willing and pleased to be a part of this, and are really open to helping and really contributing to the research, because I would think it would help all the way around 100%   Kari Luther Rosbeck ** 52:40 and the one thing is the TSC Alliance, the DOD and NIH. We all work together so that we're not duplicative. But we have, there was a research strategic plan that was developed out of a workshop at NIH that we all follow as kind of our guiding principle. We all do different things, and we all complement each other. So out of that NIH plan, for instance, a bio sample repository and preclinical consortium was recommended, and recommended that the TSC alliance is the patient advocacy group, be the one that started that and continues to make sure that those resources continue. That's just an example. Obviously, DOD does high risk, high reward. And NIH, you know, the prevent trial that I mentioned, the first preventative trial for epilepsy in United States, was funded by the National Institute of Neurological Disorders and Stroke. We helped educate the community so that people would want to participate.   Michael Hingson ** 53:46 Well, it's, I think, important and relevant to ask, how can people get involved? What can the rest of us all do?   Kari Luther Rosbeck ** 53:54 Oh my gosh, I'm so glad you asked. Well, please go to TSC alliance.org, learn more about the organization. Become a volunteer. Help us. Help us with our walks, help us with our conferences. You can certainly get involved. If you're an individual with TSC and you want to get connected through social media, you can go to Facebook, Instagram, LinkedIn, YouTube, even Tiktok at the SC Alliance, we have very active discussion groups Michael that offer peer to peer support. 24/7 especially on Facebook, it is a private group, and those group of individuals and families have been so supportive for anyone walking this journey, you can call us at 1-800-225-6872, if you need support, you can ask for a support navigator. If you're interested in helping us with fundraising or making a donation, you can ask for our development department. If you want to volunteer, ask for. Community programs, we want all takers, and we're always also happy to talk with any organization, any nonprofit, that's wanting to pull together their programs, seek advice or work as a partner,   Michael Hingson ** 55:15 and what's the phone number? Again? 1-800-225-6872,   Michael Hingson ** 55:24 and the website is TSC   Kari Luther Rosbeck ** 55:26 alliance.org,   Michael Hingson ** 55:29 cool. Well, I've asked lots of questions. Have I left anything out? Any other things that you think we ought to cover? I   Kari Luther Rosbeck ** 55:37 think you did a great job. I would just say if anybody wants to join us at our 50th Anniversary Gala, we'd love to have you. TSD alliance.org, backslash 50 Gala. We will be celebrating october 25 at ciprianis in New York City, and we'd love to have you with us. Ooh, that sounds like it'd be fun. I know you gotta get your family to bring you this time. Well, yeah,   Michael Hingson ** 56:07 if they're going to come, they should, should take me. I'm trying to think, I don't know whether I'll be anywhere near there at the time, but my schedule changes all the time, so it's sort of like everything else you never know. But I will keep that in mind, because it would be fun to come and get to meet you in person. I would love that. Well, I want to thank you for being here with us. This has been, needless to say, very educational and very enjoyable. And of course, as you know, I have the personal stake of a great nephew, but just being able to talk about it, to hear the progress that's being made as, I think, really crucial and really important to be able to let people be aware of and I hope that people who do hear this will get involved, will at least learn more about it. Have you written any books or anything? I have   Kari Luther Rosbeck ** 56:57 not written any books. Oh, we got to get you to work. That's right, you're an inspiration.   Michael Hingson ** 57:04 Well, something to work on. You should? You should write a book about it all. That'd be a new project. It's not that you don't have enough to do, though. That's   Kari Luther Rosbeck ** 57:13 right. Michael, I'm too busy taking care of our community right now, but when I retire, that might be something I think about. Well, there   Michael Hingson ** 57:21 you go. Well, I want to thank you again for being here. This has been, I will say, enjoyable, but it's been most educational. I've learned a lot, and I appreciate your time, and I hope that, as I said, everyone else has as well. So I want to thank you for being here, and anytime in the future you want to come back and talk some more about what's going on and tell us about other new, revolutionary changes and so on. You are always welcome.   Kari Luther Rosbeck ** 57:46 Thank you. Michael, I'd love to come back. Well, thank   Michael Hingson ** 57:50 you again, and let's do it anytime you'd like, Okay, you got it.   **Michael Hingson ** 58:01 You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you'll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you're on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you're there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit www.accessibe.com . AccessiBe is spelled a c c e s s i b e. There you can learn all about how you can make your website inclusive for all persons with disabilities and how you can help make the internet fully inclusive by 2025. Thanks again for Listening. Please come back and visit us again next week.

In this episode of "Next Steps 4 Seniors: Conversations on Aging," host Wendy Jones offers essential tips for family caregivers of elderly loved ones. Drawing from her healthcare experience, Wendy discusses the financial burdens of professional care, the importance of understanding medical diagnoses, and effective medication management. She emphasizes utilizing local resources, creating task lists, and holding family meetings to delegate responsibilities. Wendy also highlights the significance of support groups and recognizing signs of caregiver burnout. The episode aims to educate and support caregivers, reminding them they are not alone in their journey. Have questions or suggestions? Call 248-651-5010 or email hello@nextsteps4seniors.com. For podcast topics or sponsorship opportunities, contact marketing@nextsteps4seniors.com. Don’t forget to subscribe, follow, and share on your favorite podcast platform. Visit NextSteps4Seniors.com to learn more and explore additional resources. Let’s take the next steps together! This episode is proudly sponsored by Aeroflow Urology, a leader in incontinence care solutions. You may be eligible to receive your incontinence supplies at no cost through your insurance, delivered discreetly and directly to your door. Visit aeroflowurology.com/ns4s to learn more. Introduction to Family Caregiving (00:00:06)Wendy introduces the podcast and emphasizes the importance of supporting family caregivers. Understanding Medical Management (00:01:14)Discusses the significance of having the right doctor and understanding medical diagnoses and medications. Locating Local Resources (00:02:17)Encourages caregivers to find local resources and financial assistance available for elderly loved ones. Creating Two Lists (00:03:24)Advises caregivers to make lists of tasks they can and cannot do to better manage responsibilities. Engaging Family and Friends (00:03:24)Suggests holding a meeting with family and friends to delegate caregiving tasks effectively. Finding Support Groups (00:04:19)Stresses the importance of joining support groups for caregivers to share experiences and find help. Recognizing Caregiver Burnout (00:05:38)Identifies signs of caregiver burnout and the importance of seeking help when feeling overwhelmed. Exploring Available Options (00:06:42)Discusses various support options, including adult day centers and senior living communities for caregivers.Support our mission: https://nextsteps4seniors.com/See omnystudio.com/listener for privacy information.

As a special gift to listeners this holiday season here is a rebroadcast from December 15, 2020. Joyce welcomed the late Judith Heumann, internationally recognized leader in the disability rights independent living movement, to the show. Ms. Heumann worked with a wide range of activist organizations (including the Berkeley Center for Independent Living and the American Association of People with Disabilities), NGOs, and governments since the 1970s and contributed greatly to the development of human rights legislation and policy benefiting disabled people. In the show, she discussed her memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” which was published in February 2020.   Judith (Judy) E. Heumann - Judy Heumann was an internationally recognized leader in the disability rights community. She authored her memoir, with Kristen Joiner, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” published by Beacon Press and audio recorded by Ali Stroker, who is the first wheelchair actor to perform on Broadway. Judy was featured on the Trevor Noah show. Judy is featured in “Crip Camp: A Disability Revolution,” a 2020 American award-winning documentary film, directed by James LeBrecht and Nicole Newnham, produced by the Obama Higher Ground Production. Ms. Huemann has been featured in numerous documentaries on the history of the disability rights movement, including “Lives Worth Living” and the “Power of 504.” She delivered a TED talk in the fall of 2016, “Our Fight for Disability Rights and Why We're Not Done Yet.” Her story was also told on Comedy Central's Drunk History in early 2018, in which she was portrayed by Ali Stroker. As Senior Fellow at the Ford Foundation (2017-2019), she wrote “Road Map for Inclusion: Changing the Face of Disability in Media.” She also served on several non-profit boards, including the American Association of People with Disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion, as well as the Human Rights Watch board.

As a special gift to listeners this holiday season here is a rebroadcast from December 15, 2020. Joyce welcomed the late Judith Heumann, internationally recognized leader in the disability rights independent living movement, to the show. Ms. Heumann worked with a wide range of activist organizations (including the Berkeley Center for Independent Living and the American Association of People with Disabilities), NGOs, and governments since the 1970s and contributed greatly to the development of human rights legislation and policy benefiting disabled people. In the show, she discussed her memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” which was published in February 2020.

Christine Nagelhout is a Chicago native who has lived in Colorado for over half of her life, a place she now calls home. She attended University of Northern Colorado for her BA in Kinesiology, minor in Biology and also obtained her certification as a Certified Athletic Trainer. She attended Northern Illinois University for her MS Ed, with emphasis in Sport Management. Her job experience is diverse, including orthopedics, osteopathy, and most recently over 27+ years in outpatient physical therapy as part of the clinical staff. She acquired her Certified Senior Advisor (CSA) designation in 2020 and is the Owner of Transitions Senior Care, LLC.Christine specializes in Senior Placement, advocating for her clients and families as they navigate finding appropriate next level care communities including Independent Living, Assisted Living and Memory Care. She is a female owned business and covers the Denver Metro area for Senior Placement. Christine offers this no-cost service to her clients as well as many vetted resources to support her clients throughout their journey.Christine's personal philosophy is that every person deserves to be treated with dignity and respect, treated the way I want my own family treated.www.TransitionsSeniorCare.comhttps://www.linkedin.com/in/christine-nagelhout-905549124/*********************************************************Judy is the CEO & Founder of the Judy Carlson Financial Group. She helps her clients design, build, and implement fully integrated and coordinated financial plans from today through life expectancy and legacy.She is an Independent Fiduciary and Comprehensive Financial Planner who specializes in Wealth Decumulation Strategies. Judy is a CPA, Investment Advisor Representative, Life and Health Insurance Licensed, and Long-Term Care Certified.Judy's mission is to educate and empower her clients with an all-inclusive financial plan that encourages and motivates them to pursue their lifetime financial goals and dreams.Learn More: https://judycarlson.com/Investment Adviser Representative of and advisory services offered through Royal Fund Management, LLC, an SEC Registered Adviser.The Inspired Impact Podcasthttps://businessinnovatorsradio.com/the-inspired-impact-podcast/Source: https://businessinnovatorsradio.com/the-inspired-impact-podcast-with-judy-carlson-interview-with-christine-nagelhout-senior-placement-specialist-and-owner-of-transitions-senior-care

This week on "Financial Planning: Explained”, host Michael Menninger, CFP is welcomes Heather Esham. Heather is the owner & founder of SILC (Senior Independent Living Companions). SILC provides active and engaging care services to seniors aging in place. In this episode, Heather and Mike discuss options that seniors have when it comes to aging in place on their terms. They also discuss the different types of care as well as affordability and insurance coverage. This is a great episode for anyone that has a loved one who wants to remain independent but could use a little help. For more information on Menninger & Associates Financial Planning visit https://maaplanning.com

I'm so excited to welcome Ginni Ryan, the Vice President of Operations for Revel Communities. At Revel Communities, Ginni is responsible for the operations of the entire portfolio of independent living communities. She has over 25 years of experience in senior living and over the course of her career, Ginni has developed a deep understanding of the needs and desires of the senior population. She uses her experience to design actionable, innovative strategies to help achieve not only company goals but to improve the lives of seniors.  I always love having industry professionals on the show because it helps give that insider view of senior living and today is no different. We're talking about making that move to an independent senior living community the complexities of making the decision and the benefits senior living has to offer.   CLICK HERE for our DOABLE DOWNLOAD with FULL SHOW NOTES   Follow us on INSTAGRAM and YouTube for more doable tips!   Need help finding senior living or care? BECOME A CLIENT TODAY! We can help with your search for senior living & care wherever you live! www.clearpathsls.com     Would you like to share your story and be a guest on our show?  Email us at connect@desperatelyseekingseniorliving.com www.desperatelyseekingseniorliving.com   ————————————— Hit subscribe ✅ and spread the word!

This week, I interviewed Lynda Krueger with Owl Be There Tampa.  Owl Be There isn't a quick referral by zip code resource.  Or a DIY search through Google. Lynda and her associate improve the lives of seniors with wise guidance around senior living and care. Lynda shares the details of what it takes and how she works to find the right place based on client needs, lifestyles, spiritual beliefs, proximity to family and more. Reach Lynda in the Tampa Bay area at Or search nationwide at and click on locations It's always easier (less complicated) when you have a LTC insurance to help pay for needs at this time of life.  Then the fa,ily can focus on what's best rather than what they can afford.  Schedule to ask me for help planning.  

Are you feeling the weight of caring for aging parents while juggling everything else on your plate? You're definitely not alone. So many of us are in this boat, wondering if we're doing enough or if it's time to get extra support. That's why I'm sitting down today with Senior Care Advisor for Pacific Northwest Seniorcare, Lynn Smargis, to find out how to build your caregiving dream team. Lynn, who's encountered the Gen X “sandwich generation” challenge firsthand, shares practical advice on distinguishing between Independent Living, Assisted Living, and Memory Care. She offers a compassionate guide to making confident decisions for loved ones and navigating the often-overwhelming journey of seeking additional support. We also discuss the emotional side of caregiving—overcoming guilt, setting healthy boundaries, and the importance of open family communication to reduce stress. Lynn's straightforward advice on self-care and building a strong support network will resonate with anyone in a caregiving role. This episode is a must-listen for anyone in eldercare. It offers the tools and insights to build your caregiving dream team, from managing expectations to creating a collaborative, supportive environment! Finally, we emphasize the importance of self-care for caregivers. Her approach is about creating a collaborative, supportive environment where everyone thrives. So, if you're navigating eldercare, this episode will give you the tools and insights to build your caregiving dream team! If today's episode hits home and you have questions or want to share your thoughts, send me a DM on Instagram at @heikeyates. I'd love to hear from you! Take Action:  And if you're ready to take charge of your health and build actual, lasting habits, check out the Pursue Your Spark Blueprint. It's my 8-week program designed to help you feel stronger and more energized and finally make yourself a priority. Here is the link to see if you're a good fit for the program. I'd love to have you join us!   Connect with Lynn here: YouTube Facebook Page Instagram LinkedIn    

Join us for the latest episode of the Manager Minute podcast, where host Carol Pankow sits down with the incredible Serina Gilbert, Cheryl Carver, and Peter Pike from Colorado's Pathways to Partnership DIF Grant! In this episode, they dive into their groundbreaking Pathways to Partnership project, a collaborative initiative designed to enhance outcomes for children and youth with disabilities. Discover how they're embedding VR counselors in schools, launching the innovative “Map My Transition” app, and partnering with Centers for Independent Living to create a brighter future. Tune in as the team shares valuable insights, learning experiences they've faced, and what's on the horizon for the grant's second year. Don't miss this inspiring conversation about transforming lives through partnership and innovation! Listen Here   Full Transcript:   {Music} Serina: To support the families that are surrounding these young adults with disabilities, as well, to help them gain the skills to be able to help those students move into competitive, integrated employment.   Peter: The centers for Independent Living are required to deliver core services in one core service is supporting young adults transitioning into high school.   Cheryl: We will actually incorporate those components of the six core skill sets and the age ranges, along with all of those local partners into map my transition.   Serina: Gosh, there's so many things we're doing.   Intro Voice: Manager Minute brought to you by the VRTAC for Quality Management, Conversations powered by VR, one manager at a time, one minute at a time. Here is your host Carol Pankow.   Carol: Well, welcome to the manager minute. Joining me in the studio today are the Tri-Force from Colorado, Serina Gilbert, Cheryl Carver, and Peter Pike, Co-project, directors for Colorado Partnerships for Partnership DIF Grant. So how are things going for you, Serina?   Serina: I'm doing fantastic. I like that word Tri-Force. It feels really, really fancy. It's October here and it's like almost 80 degrees, so I'm happy.   Carol:  Ahh, good for you. You know what? In fact, I had to use a little ChatGPT because I said, well, how could I describe a fearsome threesome? And they gave me all these different things. And I went, I'm going to go Tri-Force. I really liked it.   Serina: So don't tell people your AI secrets. You came up with that all on your own. you did it.   Carol: I know, I know, how about you, Cheryl? You are old hat at this. I got to talk to you a couple years ago, which was super fun. So Cheryl's like the podcast queen now. She's on this twice.   Cheryl: I'm with Serina, though. I liked that word too. I thought it was empowering. I think this is awesome. We're going to have to use that again. Things are going well. Always busy though, you know, and the DIF grant has added to that, but in an awesome way in terms of growing, expanding and learning. So we're excited to be here today.   Carol: Awesome. And Peter, welcome to the podcast. I'm so excited you are on. How are you doing?   Peter: Well, I got to tell you, I'm a little nervous. This is my first time joining a podcast, so I'm not sure how it's going to go, but I appreciate the opportunity. And I'm coming off of two big meetings today, one with the Centers for Independent Living, where we get to get caught up on priority topics, and of course, our Disability Innovation team meeting. We meet on a regular basis. So the timing is great.   Carol: Good. Well, you're all bringing the energy. So that's great. So I just want to do a little quick refresher for our listeners so they understand what the earth we're talking about. So I have been doing different series on the Disability Innovation Fund grants. And this particular grant has to do with the Pathways to Partnership grant that was funded by RSA, and it supports projects aimed at fostering deeper collaboration between agencies. Turning these collaborations into true partnerships, and the projects aim to enhance service delivery by piloting cohesive models that better manage resources, while coordinating efforts to improve outcomes for children and youth with disabilities and their support systems, ultimately facilitating smoother transitions. And Colorado is wrapping up the first year of the grants. So let's dive in and see how things are progressing. All right. So let's get into it Serina, I'm going to kick off with you first. Could you just start by telling our listeners a little bit about yourself and how you got involved in VR?   Serina: Sure. So you already know my name is Serina Gilbert, and I'm currently a program manager under our youth services team with the Division of Voc Rehab here in Colorado. I actually got involved with VR because I was a recipient of VR services way back when, when I was in college, and while I was receiving services, I kind of flipped the script around, I was like, well, what do you do? This looks fun. Like, I want to learn this. So I got my master's and a few years later, here I am. So I've always enjoyed working with youth. That's always been my passion and I'm super excited to even be in this role.   Carol: Awesome. So, Peter, what's your journey to get to VR? Tell us a little bit about you.   Peter: Well, that's a great question. My name is Peter Pike and I work for what's called the Colorado Office of Independent Living Services, which is part of the Division of Vocational Rehabilitation. And I got to tell you, for a couple decades, I actually worked outside of the Division of Vocational Rehabilitation as a vendor and as like a community partner on different grants. And a few years back, Colorado established this Office of Independent Living Services, dedicated to working with nonprofits called the Centers for Independent Living. That's how I got involved with the Division of Vocational Rehabilitation, and I'm also a person with a Non-visible disability. And so this fits very nicely in terms of my philosophy and being part of the Division of Vocational Rehabilitation.   Carol: I love that because you bring a whole other perspective. Having come from that vendor field. So you've got some things going on that can contribute greatly to the agency and this project for sure. And Cheryl, last but not least, you know, it's been two years, but let's tell our listeners again a little bit about you and your journey into VR.   Cheryl: Well, mine is not as direct as Peter's or Serina. Again, my name is Cheryl Carver. I am the second program manager we have here in the state of Colorado under Voc Rehab for our youth services and transition programming. So Serina and I work very closely together. I kind of fell into this by accident, but I have always been in healthcare related fields. I've worked for the independent living centers. I've also worked in assisted living and I worked as a vendor as well with DVR in the mental health sector. After that, I really lucked out and was able to apply for a position. That was 24 years ago and I joined the youth services team 20 years ago, so it's been an indirect path, but once I found my niche, I have loved growing in this position with youth services at the administrative level.   Carol: I love it, you know, no matter which way, if you come in a direct way or lots of people, it's kind of a long and winding road to get into VR. Whatever way you get here, we love the energy you all are bringing, and we think it's great because people are bringing all kinds of different perspectives to the work now. I was super excited about your project when I was reading through RSA's website and looking at the little synopsis, and I'm like, oh, I got to grab the Colorado people first. You're the first in my group on this particular topic, and I understand that your project has multiple components. Can you give our listeners a little overview of the project and what you aim to accomplish? And I think, Serina, you were going to kind of give us the big picture to start out with.   Serina: Yes, it's a very big picture. So I'm sorry. We dreamed really big when we saw this grant posting last spring. We saw a lot of opportunity in our state to maybe help build some capacity and some connectedness throughout the state. So one piece of it is we started out by deciding to build what we're calling interdisciplinary teams. And what that is, is traditionally in Colorado, we don't usually have DVR counselors housed specifically in the school districts. We do have counselors that liaison with the district, but they are not like actually full time there. So we actually just did some hiring, and we'll have a couple of counselors starting in the next few weeks that will be housed directly in the local school districts and embedded with the school transition teams to make sure that services are able to be delivered to the students with disabilities within those districts. Another super exciting part that coincides with that is that there'll be services provided by the Centers for Independent Living, which Peter will talk a little bit more about as well, to make sure that there's a dedicated service provider to be able to help support those teams. And one really big, huge thing that we're really excited about is what's going to be called Map My Transition. And we jokingly call this the You are Here Website. So it's going to be a website and iOS app and an Android app designed for students, their families, educators and service providers and other community agencies within the state of Colorado. And the way that it'll work is we'll start from the student perspective, as the student will create an account on the site, they'll be asked a few questions about where they reside and what their long and short term goals are, and then they'll be presented with customized resources and videos that are specific to what their needs are, and specifically, how to get connected with the agencies that can support them. The super exciting part about that is that that also allows kind of that turnover resistant piece of things, because The educators and the service providers can also see that same list of community providers that are specific to their geographic region. So if somebody leaves a position, the next person can come into that position and get connected on this website and instantly know who their community partners are within their geographic area to connect with.   Carol: I love that app idea though.   Serina: I'm so excited about it.   Carol: Well, you know, when you talk about kids like students, man, they're not. Don't email them. They're not out looking on the internet.   serina: No.   Carol: like their phone is their life. Like they need everything to be direct connect that way. That's how they're going to, you're very smart to go that route.   Serina: Yeah. So we're super excited. Also gosh, there's so many things we're doing also to support the students. We are partnering with our family led organizations to support the families that are surrounding these young adults with disabilities, as well, to help them gain the skills to be able to help those students move into competitive, integrated employment. But then that's not all, I feel like a game show host.   Carol: Do tell more.   Serina: I know, I know. I'll have Cheryl talk a little bit about our interagency transition building as well, because that Map My Transition is also going to support that aspect of what we're doing here in Colorado.   Carol: I think that's cue to you, Cheryl.   Cheryl: I was just going to say, is that my cue? so five years ago, Colorado began an initiative through the National Assistance Center on Transition Coalition, and we began looking around the state to identify where our own gaps and weaknesses were as it pertains to interagency coordination teams. What we discovered were several of the components that Serina has mentioned that we hope to build into Map My Transition. Things like we were having trouble sustaining interagency transition teams, and that was due in large part because of turnover and staff. When interagency transition teams were coming together locally, they placed those responsibilities with an individual instead of their position. And as a result of that, once that person left, there was nobody to continue on with the work. And these interagency transition teams just eventually dissolved. Additionally, they really didn't have any goals that kept them together and gave them a reason for continuing to come together. So we wanted to help the local partners rediscover their interagency transition teams, identify tools that would help bring them together and give them an actual purpose. As a result of that work, what we created was a workbook for all partners that come to the table locally in these interagency transition team efforts, every partner at that table is required to identify within six core skill set areas that we've put together an age range, what services they actually provide. That way, when education is working on developing an IEP, an Individualized Education Program, or other entities sitting around the table like the division of Voc Rehab, developing their individualized plans for employment, we can look and see what areas does this student need to grow in, depending upon their age and their skill gap. With that, then we can pick and choose and strategically work together towards the same goals with that student. So we actually have coordinated student outcomes. We are not duplicating services. The challenge we faced was that the workbook, because we didn't have any backing to help us complete this, is overwhelming and it's difficult to use. And as a result of that, again, this is where Map My Transition comes in. We will actually incorporate those components of the six core skill sets and the age ranges, along with all of those local partners into Map My Transition so it will be easier for all users, whether it is the youth themselves or a family member, or any one of the number of entities that sit around an interagency transition table to be able to go in and see, we know what the students ultimate goals are, and these are the areas we are working on. So let's take a look at and consider what are the choices for the service providers. So I am also extremely excited about Map My Transition, because I think it is going to be fabulous in terms of what we are envisioning to create, as well as to help interagency transition teams accomplish that coordinated student outcome.   Carol: I think that is going to be super replicable across the country, like the work you guys are putting into that, because I know that's one of the things with the DIF grant, they're hoping that some of the things you all create are going to help other states out there. And that particular piece, I think that's fascinating. I think that sounds really cool.   Cheryl: I agree. So with that, we'll take it to the next level, if you will, and continue to enhance, we hope at least. What else would do you want me to kick it back to you, Serina, for apprenticeships or family member training?   Serina: I forgot about our apprenticeship piece because we're just doing so many things. We shot for the moon, right?   Carol: Yes, yes you did. There's like, 20 moving parts on this thing. I'm like, wow.   Serina: Cheryl is correct. One other aspect was to make sure that we're connecting young adults with apprenticeship and pre-apprenticeship opportunities. So we are partnering with our apprenticeship representatives here in Colorado within the Department of Labor and Employment, called Apprenticeship Colorado, and they will be helping the counselors and the interagency teams learn about how to connect with employers for apprenticeships and actually be developing apprenticeships in the areas that we're serving. And then they're also going to create training for us to put on Map My Transition for future reference, but also train our staff on it. I did talk a little bit about the family led organizations in the training, but what we didn't talk a lot about was the Centers for Independent Living Partnerships, and I'd love for Peter to be able to cover that a little bit for us.   Carol: Peter, I know you're passionate about those CILs for sure.   Peter: Yeah, I always love the opportunity to talk about the Centers for Independent Living. And maybe a starting point is to just briefly talk about what is the Center for Independent Living, right? These are nonprofit organizations that actually exist in every state of the Union. And so in Colorado, we have nine centers for independent living that are focused on helping people with disabilities of all ages, any disability type, living as independently as they can. And I want to be clear, that doesn't mean they are residential facilities. These non-profits are not residential facilities. They are non-profits that we have contracts with to support people living independently in the community, and they are a key partner. One of the great things about this grant is there was a requirement that Centers for Independent Living be part of this grant. And so with that, it really accentuates some of the strengths that they have. There are two things that come to mind. Number one is the Centers for Independent Living provide peer support services. What that means is that these organizations have over 50% people with disabilities from the board of directors, all the way down to their entry level staff. And that is key because an emphasis of this program is peer support services. So in their work for this grant, that's what they're going to be doing, is working with young adults in high school, transitioning out of high school to Address and navigate some of the adult issues that come up, whether that be employment, post-secondary education and otherwise. So that's an important strength. The second strength that I believe the Centers for Independent Living offer is that this service system you don't age out of just because you turn 18 doesn't mean, oh no, now there's another program I need to join. As I said earlier, Centers for Independent Living serve all ages of all disability types. So that provides a key continuity of services as folks transition out of high school into what's next. So in addition to that, the Centers for Independent Living will have contracts with the centers for Independent Living, serving on the interagency teams and some of the expectations in terms of the services they're going to be providing are things like benefits, planning services, things like financial literacy. They'll be focused on supporting and educating people on accessing what are called ABLE accounts. Able stands for achieving a Better Life Experience, but it's an opportunity for these young adults to actually increase their assets and resources. In addition to that, they will also be serving as vendors for the Division of Vocational Rehabilitation. And so those are key elements that they'll play in working alongside the interagency transition teams with the school districts, with the Division of Vocational Rehabilitation. So it is a great opportunity for those organizations to really illustrate their strengths and the difference they make in the lives of people with disabilities.   Carol: I love that you are leveraging the Centers for Independent Living, because I think sometimes people I don't know, they're there, but you sort of forget about them as being a resource for more than maybe folks are thinking about. Oh, somebody needs a ramp to get into their house. Let's call the CILs, you know, type of thing. But they have a lot more going for them. And they're strategically positioned throughout your state and in every state. You know, they're all throughout all the geographic areas. So they're excellent partner to leverage. When you're looking at an endeavor like this I think that's smart.   Peter: You know Carol, it also fills one more gap. Like the Centers for Independent Living are required to deliver core services, and one core service is supporting young adults transitioning into high school. So with this particular project, they're actually working with youth in the schools. That's not necessarily part of their core services. So it really complements the opportunity to start the work earlier and support it ongoing even when they're out of high school.   Carol: Yeah, I really like that, Peter, I think that is so great. So I know you guys are you know, you're at the end of year one and you made it. You made it through year one. What kind of learning experiences. And I love it because I'm not going to say what sort of challenges did you have? What learning experiences have you had so far? Cheryl, I think I'm kicking that to you.   Cheryl: You are. So while this is a multi-pronged approach that we are taking, if you will, with several different outcomes for each one, we have encountered challenges that we have had to overcome or lessons we have had to learn along the entire way, starting from the very beginning with communication. Even between this Tri-Force. And I don't think it's a terrible thing to mention. That was one of the things that the grant reviewers brought up how, as three managers, are you going to do this job together? And we were like, we can manage this, we can handle this. We did. We had to learn how to communicate well together. We had to understand one another's styles and figure out what worked best for each of us in order to come together, agree upon things and respect when somebody didn't, and hear them out, even if that was not the direction we were going to go in. Inclusion has been another one. While we put above everything equity and diversity and inclusion. Just because we are the division of Voc Rehab, it's still easy to overlook or forget to give certain audiences the opportunity to have a say in things, especially something this large. And when you're moving forward and you've got deadlines and timelines, having to take a step back and say, wait a minute, did we check with everyone is really, really hard. So fortunately, again, because there's three of us, we always have that one that raises their hand and says, wait a minute, did we do that? So it's good to have that piece there. When we're working with our planning and advisory team or other partners around the table, we are also learning all about marketing and how to go about getting the marketing. We need to message things correctly and deliver that message out there to the communities about things as simple as trainings that we hope to offer to family members in partnership with our parental consortium here in Colorado. We are maintaining, I think maintaining is a good word, maintaining a huge, massive budget and having to be willing to be flexible within that budget. We are given certain parameters to operate within, and we have to go about getting changes approved periodically. But every time we turn around, there's been another new need or a new requirement or oh, wait a minute, we calculated that wrong. So we've got to go back and recalculate it. It has absolutely been, I think, a learning process for all of us. Another area that we have worked very diligently in is just as a state government, where we have had to learn different processes and procedures. Things have taken longer than we expected, having to write reports in certain manners or fill out certain forms. That in and of itself has been a hurdle that we have had to overcome together in regards to learning things.   Carol: You guys are not unique. I mean, I do ask this question of everybody when I'm talking about the DIF grants, just because the learning opportunities you've had this first year, it is really common because there are so many systems and practices and processes within each state. Everybody's got their own little nuances and things. And when it isn't your everyday job to navigate those and you now are co-directing, you know, this Tri-Force and this lovely DIF grant, and you're getting exposed to all these other processes that you didn't know about. It is quite a learning curve just to get through all of that. And once you get it figured out, then you fundamentally go, okay, you know, year two gets easier. It's like, all right, now we figured out all the pieces of the process and it gets better as you go along. So that is common. Everybody, I don't think I've talked to anybody across the country that hasn't had that as well. So I think you guys stated that really nicely. Now I know you all when I got to visit with you a little earlier, you had mentioned that you had this really important realization about your service model and that maybe it doesn't work like you thought it was going to work. When you are conceptualizing something and then you're going to put it into practice. So I don't know. Peter, can you talk a little bit more about that?   Peter: Yes, thanks. I'd be happy to. So as we've been talking, we talk about establishing three pilot sites or three interagency teams. And so we went through a process with our planning and advisory team, came up with a matrix, and we were able to identify three sites. And so we have this vision in this model about how those sites are going to be implemented and moving forward, including the Centers for Independent Living. And so one of the communities where we are working to establish a pilot site is in northwestern Colorado. And the school district that's involved is based out of a rural community, but it's also a mountainous resort community. And so what that means is the cost of living in that particular area actually is pretty high. And there's been articles on it within the city and across the state talking about challenges, just filling some government positions in that community. And so as we were having conversations with that interagency team, particularly the Center for Independent Living, that serves not just that community, but a five county area, they talked about the challenges. If we're going to have a contract with and bringing on a staff because the wage and the affordability for someone to live in the community that they're serving don't align very well. And so we've had to sort of pause and talk with our local partners about, man, what does this need to look like in order to meet the needs of the students and families in that school district, and at the same time, navigate some of these real issues around the cost of living. And so we're taking some extra steps in working with the Center for Independent Living and the school district to identify maybe where do we need to bring in new partners or other partners, or what are alternative ways to deliver the services that are necessary to meet the needs of the youth and families, right? Just because you're living in a resort area doesn't mean everybody is of the same economic class. And so our aim with this project is to make sure we're serving underrepresented communities. And sometimes socioeconomic status is kind of an important factor in that way. And so we have to take more time and understand how best to meet the needs of that community and how it might look different than the other two communities where we're continuing to move forward with all the parts.   Carol: That's a really excellent observation. I know VR has been facing this ever since the pandemic, kind of across the country, especially as people moved, you know, we had like floods of people moving to Florida, people moved into Idaho and different communities. And I know the directors have said, boy, it's impacted the program in different ways because now you have whole communities where they've had this big population move in and all the prices have gone up. And so it's tough even to get counselors and different staff working in these different regions and even to get vendors in those regions because the cost of living is so expensive. So you've got people there who've been there for many years, but yet new people are coming in and you've just got this kind of mire of crazy economic conditions that make it really difficult to navigate all of that for the consumers that are in those areas. So that is a really good realization you had. Now, I know we're on year two like you're three days into year two. You guys, what are your plans for year two? Miss Serina.   Serina: Sound like I'm in trouble.   Carol: Oh, no.   Serina: No, no. We have a lot like we talked about it a little bit earlier where we're hiring the school based rehabilitation counselors. We're well into that. And making sure that they have the training and support that they need to get started with everything. We're super excited because we're in the early stages of planning their kickoff meetings, where we'll be on site with each of the teams and help them, A, get on the same page and like kind of level set everything like so everyone has all the same information. And then one of the bigger pieces is that they all walk away with a tangible plan for how they're going to initially start collaborating and coordinating services with one another. So we're super excited about that. Another thing that I'm really personally excited about, because I'm kind of a marketing and social media dork in a way, is we're going to be coming up with some branding and a way to refer to this grant that resonates with the people that we're serving with students, families, educators, and, you know, the service providers that are working with us. Saying DIF grant, unfortunately, doesn't mean much to the average person. And there's a lot of DIF grants now. I believe they just funded the fifth or sixth round of them. So.   Carol: Oh yeah, and there's like 28 of those or something.   Serina: Yeah.   Carol: so there's a bunch   Serina: There's a lot. So we're super, super excited to get some branding and social media going and things like that to get people excited about what we're doing. Um, what else are we doing? Team what am I missing? Those are some really big things that we're doing.   Carol: Do you have anything cool that you're doing with the branding? Like can you share if there's something little or is it all top secret right now.   Serina: No, we just, thanks to our grant manager, Lauren Riley, and our program assistant, Amy Smith, they found us a marketing agency, and we're going to be meeting with them in the next couple of weeks so that they can talk through kind of what our needs are and things like that, and then they're going to have some focus groups with stakeholders to get their input and see what resonates. So I'm super excited.   Carol: Very cool. Very cool.   Peter: You know, Serina, thanks, sort of opened up an opportunity to talk about family and youth engagement. And one of the opportunities we have with this project is we actually can pay honorariums to young adults and families to participate, particularly on the planning and advisory team. And so we definitely want to hear the voice of the people we're serving and bring them to the table so that as we bring this to life, we have their input from the beginning.   Carol: Yeah, I love that, that's great, you guys, the energy of the three of you, it is super funny. I can feel it like our listeners can't see it. But coming off the zoom screen. Like it is so fun. I think you three complement each other very nicely. Now, I know for our listeners, you know, sometimes people want to reach out to you. I know you're in your initial stages, but sometimes folks just have questions or they're super interested, like Map My Transition, they're gonna be like, when's that going to be ready? Because we want to borrow it like we want all of that. Do you have an email or something you can share with our folks on a way to contact you?   Cheryl: We'd like to direct those questions to our actual grant manager, who is Lauren Riley, and her email address is l a u r e n dot R i l e y at state dot co dot US.   Carol: Excellent. Now that's helpful because otherwise the stuff goes kind of all over. And I do end up hearing back from the different folks we've had podcasts with. They're like, oh, we had some people reach out. So I'm hoping folks will do that. Are you three going to be at the CSVAR conference?   Cheryl: Not the upcoming one.   Carol: Possibly in the spring?   Cheryl: Maybe.   Carol: Yeah, because then people can track you down there as well.   Peter: I'd like to. Next time you talk to Kristen, say, hey, Kristen. Sending Peter to the CSVAR conference?   Carol: I'll put in a plug for you, Peter. That's awesome. Well, you three have been an absolute delight and I really appreciate your time. And I'm hoping I get to check in with you down the road to see how things are going. And I wish you the very best with this project. Have a great day.   Cheryl: Thank you, Carol.   Serina: Thanks so much, Carol.   Outro Voice: Conversations powered by VR, one manager at a time, one minute at a time, brought to you by the VR TAC for Quality Management. Catch all of our podcast episodes by subscribing on Apple Podcasts, Google Podcasts or wherever you listen to podcasts. Thanks for listening!

Moving to a smaller home is a complex process that requires careful planning and tough decisions. But sooner or later, we all need to reduce our possessions, either to fit in a smaller space or so we can comfortably and safely age in place. In episode #228 of The Clutter Fairy Weekly, Gayle Goddard, professional organizer and owner of The Clutter Fairy in Houston, Texas, explains how to plan for a smaller living space and applies downsizing lessons to “right-sizing” the stuff in our cluttered homes.Show notes: https://cfhou.com/tcfw228The Clutter Fairy Weekly is a live webcast and podcast designed to help you clear your clutter and make space in your home and your life for more of what you love. We meet Tuesdays at noon (U.S. Central Time) to answer your decluttering questions and to share organizing tools and techniques, success stories and “ah-hah!” moments, seasonal suggestions, and timeless tips.To participate live in our weekly webcast, join our Meetup group, follow us on Facebook, or subscribe to our mailing list. You can also watch the videos of our webcast on YouTube.Support the show

On October 1st Blaise attended the NYS Disability Rights Employment Awareness Month (DREAM) event. He shares why the dream became a nightmare quite quickly. If you were there what was your experience? Rate, review, and subscribe! Want to learn more about the Technology Related Assistance Program for Individuals with Disabilities? The NY Association on Independent Living is hosting a webinar today from 1-2:00 p.m. eastern. Register here: https://us02web.zoom.us/webinar/register/WN_ZZ8vfJ6dTpmG1UHRd7jUpg Support Blaisin' Access Podcast by contributing to their tip jar: https://tips.pinecast.com/jar/blaisin-access-podcast Send us your feedback online: https://pinecast.com/feedback/blaisin-access-podcast/77061f72-d6f7-40dc-a6b4-6af13794aedfRead transcript

Host Jen Miller speaks with Brian Bowles, the Avon Lake Communication & Technology Department's Senior Production Assistant, about the behind-the-scenes work that goes into creating the Avon Lake Matters podcast. Upcoming events happening in Avon Lake: October 14: Columbus Day - No City Council Meeting October 15, 7:00 PM: Rescheduled City Council Meeting October 18: Curbside Branch Pickup Ends October 19, 10:00 AM: North Coast Rotary Club's Medical Equipment & Supplies Donation Drive at the Clubhouse of Independent Living at Sprenger Health Care's Towne Center October 19, 11:00 AM: Empty Bowls by the Lake Fundraiser at the  Avon Lake High School cafeteria October 21: Curbside Leaf Pickup Begins October 21, 1:00 PM: Avon Lake Historical Society Presents "Women's Roles During the Civil War"  at Avon Lake Public Library's Waugaman Gallery October 21, 7:00 PM: Collective Committee Meeting October 24 & 25, 9:00 AM: Holy Spirit Ladies Guild Garage and Bake Sale at Holy Spirit Parish's Fr. Mosovsky Hall October 25, 7:00 PM: Avon Lake vs. Avon SOUPer Bowl Food Drive at  Avon Lake Memorial Stadium October 26, 3:00 PM: Halloween Trunk or Treat at American Legion Post 211 October 28, 7:00 PM: City Council Meeting October 29: Absentee Ballot Request Deadline October 29: Ward 1 Resident Meeting with Councilman Rob Shahmir at the Avon Lake Public Library October 31, 6:00-7:30 PM: Halloween Trick-or-Treating November 4: Absentee Ballot Postmark Deadline November 5, 6:30 AM-7:30 PM: Election Day For information about these and future events/meetings in Avon Lake, please visit www.AvonLake.org/Events.

Health and Wellness is a hot topic for a reason. No longer are we looking for ideas andsuggestions to get better. We are looking for ways to stay happy, healthy, fulfilled and living anoptimized life. Today's show, filled with a plethora of experts, practitioners, teachers andfacilitators—each with their own expertise in the health and wellness sector—will blow youaway. The ideas shared in this show are ones you won't have heard about before. The quality ofyour lifestyle is no longer in someone else's hands. You can start living and feeling better thanyou've felt in years! The cure for your health and wellness concerns lies in today's episode withthese 9 incredible experts:David Medansky, The Health Guy - https://jadedhealth.comCarol Koppelman, Author of “Do the Necessary. Let the Rest Go To Hell” -https://cpksolutions.comCarroll Patrizi, Lifestyle Coach - https://carrollpatrizi.comEstrellita Gonzalez, Skin Care Expert - dermabrightclinic.comCarol Lange, Nurse Next Door - www.nursenextdoor.comDr. Sonja Jahn, Transformation Specialist - https://drsonjajahn.comJaisri Lambert, Ayurveda Doctor - https://ayurveda-seminars.comSujata Tiwari, Author of “Against All Odds. No Retakes, No manuals. Real Life Lessons.” -https://www.pouroverpores.com/Linda Nardelli, Spiritual Counsellor/Channeler - https://lindanardelli.comIf you were packing for a desert island and could only take one artist or album with you, whatwould it be:David Medansky - Kat StevensCarol Koppelman - Aretha FranklinCarroll Patrizi - Neil YoungEstrellita Gonzalez - U2, Joshua TreeCarol Lange - Keith UrbanDr. Sonja Jahn - DJ Nora, En PureJaisri Lambert, The Anurag Sagar of Kabir (book)Sujata Tiwari - Audioslave, Be YourselfLinda Nardelli – Siddharta, Spirit of Budda Bar

Vessie from The Lodge at Leon Springs talks to us today about a hidden gem of a community halfway between San Antonio and Boerne offering both assisted living and cottage style independent living.  Vessie walks us through common reasons some of her residents have chosen to make the move from a traditional single family home into a community setting.  Join us to see if this type of living might be a good fit for you or your loved one!

Let's explore the critical balance between life skills, independent living, and education for children with disabilities.   The importance of academic learning in building logical and critical thinking, as well as emotional regulation is often ignored or trivialized in the lives of children with a disability.    If your school team is focusing on life skills at the expense of education,   If you find yourself asking what about independece, what about college, this is the right discussion for you!   

Episode Summary: In this episode of The Autism Dad Podcast, host Rob Gorski talks with returning guest Amber Arrington, founder of Autism Savvy. Together, they explore the challenges and successes of helping their adult autistic children transition into independent living, whether through group homes or other arrangements. Rob shares his experience with his son Gavin, while Amber discusses her son Tyson's journey. They cover different living arrangements for adults with autism, ranging from group homes to more independent living, and discuss the emotional and practical aspects of these decisions. This episode is a must-listen for parents preparing their autistic children for adulthood. Key Discussion Points: - Choosing the right living arrangement for adult children with autism - Various options like group homes, residential facilities, and independent living with support - Navigating disability agencies, social security, and guardianship - Emotional hurdles of letting go as a parent Quotes from the Episode: "Assume from the moment your child is born, they'll be an adult someday and will need to exist without you." — Rob Gorski "Thriving looks different for every person. It's important to remember that." — Amber Arrington About Amber Arrington: Amber Arrington is the founder of Autism Savvy and a mother of six, three of whom are autistic. She provides practical advice to help parents navigate the autism journey. Connect with Amber on Instagram @AutismSavvy or visit www.autismsavvy.com. About Rob Gorski: Rob Gorski, known as The Autism Dad, is a blogger, podcast host, and autism advocate. As a father of three autistic children, Rob offers personal insights and support for parents. Connect with Rob at www.theautismdad.com. Listen and Subscribe: Subscribe to The Autism Dad Podcast on Apple Podcasts, Spotify, or Google Podcasts. Please leave a review if you find the episode helpful! This Weeks Sponsors Learn More: Grokkoli Hey parents! Is your child struggling with math? Meet Grokkoli, an AI tutor that helps kids progress multiple grade levels in months. Grokkoli identifies where your child struggles, meets them at their level, and is effective even for kids with learning disabilities, ensuring they get the support they need. Currently supporting K-5 math, Grokkoli is expanding to grow with your child, making it a great alternative to human tutors at a lower cost. Try Grokkoli free for 7 days! Visit grokkoli.com and use code “theautismdad” for 50% off your first month. Learn More: Mightier Mightier helps kids self-regulate emotionally through biofeedback-based video games. Learn more and get a discount at Visit Mightier. Use code “theautismdad22” to save 10%.

On episode #244 of The Author Factor Podcast I am having a conversation with nonfiction book author, Catherine Tyler-Northan. Catherine is the founder of The Tyler Northan Group, an organization focused on dismantling barriers to accessibility for people with disabilities. With 30 years of experience at the Peninsula Center for Independent Living, Kathy brings a wealth of knowledge and dedication to her mission of promoting independence and inclusion.Kathy's book, The Accessibility Revolution, is a must-read for anyone interested in creating inclusive environments. One compelling reason to read her book is its practical approach to accessibility, offering actionable steps that businesses and individuals can implement immediately. Through her book, Kathy aims to start a conversation and encourage real change, making it a vital resource for all.For more details about our short, helpful book publishing program, visit BiteSizedBooks.com.

Get ready to dive deep into the future of Vocational Rehabilitation (VR) with Dr. Joe Ashley and Dr. Bob Schmidt in our latest episode! Joe, the dynamic Project Director of the VR-ROI initiative at George Washington University, teams up with Bob, one of the leading economists and the Project Research Coordinator, to bring you insider knowledge on revamping return on investment models for VR programs. They're on a mission to streamline and elevate how VR agencies operate, helping them become more efficient, effective, and impactful. Their discussion is packed with actionable insights that will empower your agency to sharpen its data collection strategies, ensuring the true value of your services shines through. Plus, learn how to better communicate the VR success story to policymakers and stakeholders! Tune in to discover how you can maximize your VR impact with the latest advancements from the VR-ROI project. Don't miss out!   Listen Here   Full Transcript:   {Music} Joe: We're trying to make sure we have information that the director can use with policymakers, and something for clients and counselors to use to say, yes, this is the kind of services we're looking for.   Bob: The model we develop is based on readily available administrative data.   Joe: It's built on the individual customers and how well they do and what their outcomes are.   Bob: The human capital development, that's what it's all about a lot. Some things just aren't measurable. So when you mentioned financial return on investment, that's what we're talking about.   Joe: If you can't capture it, you're not able to tell the story.   Carol: Yep, if it isn't documented, it didn't happen.   Bob: That's right.   Joe: Yeah.   Intro Voice: Manager Minute brought to you by the VRTAC for Quality Management, Conversations powered by VR, one manager at a time, one minute at a time. Here is your host Carol Pankow.   Carol: Well, welcome to the manager minute. Joining me in the studio today are Dr. Joe Ashley, the project director for the VR Return on Investment project based at the George Washington University, and Dr. Bob Schmidt, one of the five economists working on the project and the project research coordinator. So, Joe, how are things going for you today?   Joe:  Today they are doing really well. Thanks for asking, Carol.   Carol: Nice to hear it, Joe. and Bob, how are you doing?   Bob: I'm doing well as well, at least, as well as Joe is doing.   Carol: That's awesome. Alright, glad to have it guys. Okay, so for our listeners, Joe is my colleague and we got him out of retirement to serve as the project director for this important initiative. And this project is funded by the National Institute on Disability, Independent Living and Rehabilitation Research, also known as NIDILRR. Now, this is the federal government's primary disability research organization and is part of the Administration for Community Living. Now, NIDILRR's mission is to generate new knowledge and to promote its effective use to improve the abilities of individuals with disabilities to perform activities of their choice in the community and to expand society's capacity to provide full opportunities and accommodations for its citizens with disabilities. NIDILRR achieves this mission by funding research, demonstration, training, technical assistance, and related activities to maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities of all ages. They also promote the transfer of, and use and adoption of rehab technology for individuals with disabilities in a timely manner, and also ensure the widespread distribution and usable formats of practical, scientific and technological information. And they do address a wide range of disabilities and impairments across populations of all ages. Now, Joe, I know you have a little disclaimer you wanted to make.   Joe: Yeah, I just want to be sure that people understand that what Bob and I are going to talk about today is our opinion of what return on investment should be, and is not necessarily reflect what NIDILRR is looking at.   Carol: Excellent. Well thanks Joe. Let's dig in. So, Joe, why don't you kick us off and tell us a little bit about yourself and your journey in vocational rehabilitation?   Joe: Carol, I've been in rehabilitation for quite a while. I worked with the Virginia Department for Aging and Rehabilitative Services, the general agency in Virginia, for over 25-27 years, most of the time as an assistant commissioner in a variety of roles. I have a master's in rehabilitation counseling from the University of South Carolina. That sort of got me focused on vocational rehabilitation. And then later I had a Doctorate in rehabilitation from SIU at Carbondale that took me on a path of looking at program evaluation and program development. When I got to Virginia, I was working out of the Woodrow Wilson Rehab Center, now called Wilson Rehabilitation Center, and was working in a program that was collaborative across, it was one of the early transition grants, 1985,and it looked at vocational evaluation as a part of a process to help kids learn what they needed to do. And we were working with students from special education and vocational education in the schools, and vocational rehabilitation, and getting these systems to collaborate to help kids find out what they want to do and to be successful in employment and in life. And I got to where I really enjoyed that kind of collaborative work, and I ended up as an assistant commissioner in the agency, looking at developing innovative new programs as a part of my responsibilities and looking at a lot of the ancillary support services like rehabilitation, engineering and other kinds of things. Through a series of circumstances, I ended up as the director of the field services for four years, where I began to get a good sense of what disabilities needed to be in terms of supports to be successful in employment and being able to live successfully in their communities. In addition to that, what counselors and other staff needed to be able to provide those services to them. And then I got into the job that was my favorite, which was something called grants and special programs, where I did a lot of the Social Security stuff, cost reimbursement, work, incentives specialist advocates. We created a new system there to do fee for service for the work incentive services. We did a lot of work with the workforce agencies. I did all the agreements with that, and then I got to do grants and any of the grants that helped people with disabilities be able to live and work and thrive in their communities were things that we were willing to support. And I got to work with a lot of different funding systems and across a lot of different systems, you know, Special Ed workforce systems, behavioral health, a lot of different groups to help people with disabilities have opportunities. So that's what I really enjoyed. And that's where I came across the late doctor David Dean and then Bob Schmidt as a part of that package with Dean. And it was about telling the VR story. And I got real passionate about how do you tell this story in a way that is going to get people like GAO to pay attention, as well as help directors with policymakers and individuals and counselors help make decisions about what's a good choice for them. So that's really how I got to where we are today with this new grant.   Carol: Very cool Joe. I know we all look to your program in Virginia for kind of the cutting edge stuff that was happening, because you all seem to always have just something cooking.   Joe: Yes.   Carol: It didn't matter what. And especially like the disability work incentive stuff that you were talking about and all of that. Oh gosh. I just think you've done a lot of stellar things there.   Joe: Well thank you. It was fun.   Carol: It's awesome. So, Bob, tell us a little bit about yourself.   Bob: Sure. Happy to. Joe mentioned Doctor David Dean. He was a colleague of mine in the Department of Economics at the University of Richmond. He worked on what he called economics of disability, and he started working on that in graduate school at Rutgers with a faculty member there. And he worked on that. So that was in the 1980s. He came to the University of Richmond, and he got me interested in it because he was an outgoing, gregarious, very bright guy and made friends easily. So he got me involved in this probably early 1990s, and we started working with DARS and several other things at the time with Joe, but also Kirsten Roe. I don't know how many people remember her, but she was instrumental in all the work we did. So this is actually our third grant with NIDILRR. The first one was a demonstration grant. So it's a kind of a proof of concept. Second was implementing it. Now this one is refining it and taking it to the next step. That's what we're trying to do with that. So David got me excited about it. Joe keeps me excited and he keeps me honest.   Carol: That is awesome. Well, I know just being around the director ranks for years and folks talking about return on initiative, it's been a, you know, a hot topic. People chat about it, but I don't know that everybody always really understands it. And I think sometimes people think maybe it's something that it isn't and they aren't very good at explaining it, but everybody wants to do it. So you guys are going to unpack all this for us. Joe, why don't you tell us a little bit about the project and what you're trying to accomplish?   Joe: Well, with this current iteration. It's what NIDILRR calls a field initiated project on their development side, and it's got a ridiculously long title. So I'm just going to say it is about updating and simplifying our return on investment model. That's its main purpose, and it's about helping our agencies understand what they can do to be more efficient and more effective, and take a look at the mix of services that they provide, to be sure that they are getting the most out of the resources they have to help people with disabilities obtain, you know, that probability of employment and upon employment, their earnings. And we're trying to make sure we have information that the director can use with policy makers, that agencies can take a look inside their own services to say, maybe I need more of a particular type of service because I'm getting good outcomes, or maybe I need to tweak a service because it's not getting what I want it to do, and then something for clients and counselors to use to say, yes, this is the kind of services we're looking for. We got four goals, and the first one is just really to update the model. Our previous model was prior to WIOA implementation, so what we hope to be able to do is take a look at the data systems and take a look at the performance indicators that WIOA requires. And we can do a correlation, perhaps with the long term employment to see how well they're correlated. Also take a look at Covid impact. The second goal is about intensity. Our other model is you either got a service or you didn't. And if you got the service then how did it affect employment and earnings? Well, the next logical step according to The Economist and we have five on the project as you mentioned earlier, was what is the intensity of the service. Does that make a difference. So that intensity measure could be hours of work. It could be what it costs to do something. It could be units of service. And taking a look at if that is related to the propensity for employment. The other piece that goes with that is how about internals provided services, what we had before in the system, nobody had good measures of the services their own staff provided. So we're hoping with what we're seeing now and we're working with the two agencies in North Carolina, and they've been extremely helpful and collaborative with us on this process is take a look at the internally provided services and see what impact they have on the employment and earnings side of things. And then we've been told many times our third goal is simplify the model. Right now it takes economists to run it. Well that's not always a good idea for some people. So what we're trying to do is see what econometric models could we put in place to simplify this process so that it's more available to rehab agencies. But you want to make sure it's still rigorous enough to give you a reliable estimate of return on investment. So one of the things we're having with that is many of the folks on the who are listening to the podcast may be aware that we did a data analysis and management capacity survey that CSVRA sent out. Our advisory committee supported, and with that, we got 54 agencies to provide us information on what their data capacity is and what this capacity of their staff is. And then what kind of training they might be interested in. We're still looking at the data from that and we'll have some information on that later. But what we find in this may make a big difference on how simplified the model can be, or whether we need to take a different track to help people be able to implement a new model. And then finally, it's about knowledge translation. And part of that is coming to us like we did a consumer and stakeholder forum with the North Carolina State Rehab councils and some other stakeholders to get input on what they'd like to see, what kinds of information and would this information be helpful to them. And then we're going to have another consumer and stakeholder forum probably next spring to say, here's the model as we have it so far. Does this make sense to you and would this be valuable to you? So those are the big overriding goals that we have for the project.   Carol: I really like that you guys are digging into the capacity that agencies have, you know, with that data analysis, because I'm just thinking definitely, as I've been out across the country that you've got to have and the have nots. I mean, there for sure. are folks, I think of our friends in Texas and they have a lovely team there. Just they have like an amazing...   Joe: Oh yeah, they do.   Carol: ...resource team. And then you've got other folks trying to scrape together kind of a half of a position that can maybe do a little smidge of a little something around the 911.   Joe: they may have a resource like a data system, but they don't have anybody that can run it, or they may have staff with the capacity to do the data system, but they don't have the system. I mean, it's a lot of different variables there.   Bob: I'd like to jump in here just on one thing, which was on the simplified VR model. So the model we've developed, thank God it was by economists, is we're trying to address the question here. The goal of the program is to get people into competitive employment or keep them in competitive employment. If they already came into the program with it, maybe build on that. So there are a lot of things that are correlated with how well you do in the labor market, gender, race, Age, education level. All things are correlated, right? And maybe service provision in the VR program. But we'd like to take it from well, it's correlated, but we don't know exactly how or why. In the same way you can say, well, provision of this specific type of service leads to improvement in the labor market, leads to a greater likelihood of obtaining competitive employment. Now that's a different issue. Now the way you normally do that, the gold standard is a randomized clinical trial, right? Where you take people and you randomly select them and it's double blind. So neither the researcher nor the individual involved in the experiment know who's receiving the treatment, or  who isn't. Well, that's clearly impossible in VR. First of all, it's illegal to deny service to someone who is eligible and for whom you have the money. But secondly, it's impossible. So what you have to do is you have to impose statistical controls somehow. You have to do it through some sort of statistical model. And we've developed one which is state of the science. What state of the science inherently means that not everybody can implement it. So even at some universities, they aren't able to implement this particular model. And so we wanted to ask the question, could we come up with a simplified version of this model, a simpler model that can be used possibly in a VR agency or possibly at a local community college or university, something like that. And they could get similar results. So we wanted to see how could we do it? Is that a possible goal? What do you lose when you do it? Does it do a good enough job, or what kind of qualifiers do you have on it?   Joe: Where are the tradeoffs?   Bob: Yeah, what are the tradeoffs? That's a simpler model we're trying to do.   Carol: Should we talk about the model you developed now? Do you want to talk about it?   Bob: That'd be fine. Sure.   Carol: Let's do it.   Bob: Okay. One of the things is that the model we developed is based on readily available administrative data. What that means is you don't have to run a survey. You don't have to go out and do a very expensive sort of research project to find out what's going on. Instead, we use data from agency's own data system, which they collect to report to the Rehabilitation Services Administration, (RSA). they have really, really very good data. The RSA forces them to collect very good data. In fact, for some of our economists, their eyes just lit up when David told them the kind of data that he was able to access it. Whoa. That's great. So there are two levels. One is you get data from the agency itself, and then they will provide data to us that they provide through the quarterly RSA and nine over 11 report to the RSA. And more than that. So we get much greater detail than that if we know how to use it. If we can identify and know how to learn how to use it. And then secondly, all the agencies have given us access, been able to give us access to unemployment insurance sort of data. So quarterly data on that and what the RSA collects upon closure. They're mandated to follow employment and earnings for four quarters after closure, but we don't think that's long enough, especially since WIOA was passed Workforce Innovation Opportunities Act and changed the mandate to work on transition age, transitioning students with disabilities or providing those sorts of services. Well, if you're going to start working with young people who are just entering the workforce, or you're providing college level education or skilled training services to any age. You can't just follow them for four quarters. I mean, if you're just entering the workforce, you're not going to enter it at the highest levels of the workforce, right? So if you want to know what the real impact is, you have to follow them longer. So with the unemployment insurance agencies, we've been able to get quarterly employment and earnings data from 2 to 3 years before they even applied to the program. That's kind of a baseline. But what are the services do to you? How do things change? Well, that's your baseline three years before application. Then we try to follow them for at least five years after application at least. Now the current one starts in 2018. So the earliest applicants we have from 2018, and then we collect all applicants between 2018 and 2021. So already it's a stretch to get five years of data. But we had to start that recent because we all wasn't fully implemented effectively until 2017, 1819. In fact, the fellow North County says preferably 19 or 2021. But then you don't have, you know, this thing ends in 2025 and you don't have enough data, enough tracking. So that's the first thing, is readily administrative tracking earnings over a long period of time, as long as possible. Another thing is generally the way these things are done or have been looked at is you look at the VR program as a whole. You don't look at by discipline, you look at the agency. These are people who apply for services, and these are people who got to the point where they got a plan or plan for employment services. And then how do they do? We look a little differently. We look at by disability type. First of all, we look at for broad based disabilities folks with a cognitive impairment. And that could be an intellectual disability or a learning disability. Folks with a mental illness. And then also we try to find out how severe that mental illness is. Folks who have a physical impairment and folks who are blind or visually impaired or otherwise visually impaired. So we look at and we estimate those all separately because we think services are assigned differently by disability type on average. And also the disability type affects how you will do in the marketplace, for example. What we found out was for folks with physical impairment, unlike folks who have a cognitive impairment, cognitive impairment might be with you since birth, perhaps. And so therefore you kind of have a steady level of earnings at a certain level. But if you have a physical impairment that often comes on very quickly, very acutely, very quickly. So all of a sudden you see their preapplication Application for earnings pretty good. And then boom there's a big plummet, right? And so then you have to do something different with the track that the pre-application earnings. So that's the second thing. The third thing is that this idea that these folks, we look at the folks who received,, who had a plan and therefore received services, we compare those people who didn't have a plan and didn't receive services. So he received service, he didn't. Or, in economics or the social sciences, you call it a treatment group and a comparison or a control group. Well, we thought you could do a little bit better than that. What we look at is we look at anywhere from 7 to 9 to 10 to 11 different types of services things like diagnosis, medical treatments, college education, training, all those sorts of things. We say, first of all, how is the decision made that you're going to receive this type of service? And then secondly, what impact does it have? So what factors influence the decision to We see what type of services and what impact does that service have in the labor market on gaining and keeping competitive employment. So we look at that. So we look at different types of service. So you can see already it's a much richer type of analysis therefore much more complicated types of analysis. And then the last part is that we built sort of a state of the science model. And that's what makes it complicated for many people to try to implement. And by that we mean that this correlation versus causation. So instead of doing a randomized clinical trial you have to take the data as you receive it. So therefore you kind of build control by saying how do you control for different things that might affect this that you don't observe. Now one of these might be motivation, right? So if you have someone who's particularly highly motivated that will might lead them to both apply to a VR program and a plan, follow through and move on, successfully complete the program, and might also quite separately, whether or not they receive services. It helps them in the labor market, right? Because they're motivated to succeed. So how do you distinguish those things? That's tough. You do randomized clinical trial. You can't because both types people end up in both parts motivated and unmotivated. So we have to impose this controls. And that gets a little complicated. So that's basically the model is then once you're done. So then we get impacts by type of service. We also collect cost of providing those services. Cost of the program. We have those impacts. We let them spit out and say what would happen if they kept getting this benefit level for the next five to 10 to 15 years? And then you have to do some what's called discounting in technical and finance and econ. So you do that and then you say, okay, this is the total gain from that service or actually from all the services combined. And this was the cost. And the difference to that is kind of cost versus benefits, right? Hopefully the benefits exceed the costs, right? And that's how much they've gained because of the service per versus both the. That's essentially what you do. And the other thing about that is we can calculate that for each individual in the sample. So we have individual level returns on investment individual level benefits or effectiveness. And you can then aggregate that up and say okay agency wide. This is what it looks like. The agency's return on investment for a particular disability. That's what their return on investment look for males their females. Any group you want to do you can just do it because we have the individual impacts of it. So that's the model. And we want to see whether a simplified model can get us similar sort of information.   Joe: One of the things, Carol, that I find compelling about the model in particular is something Bob just pointed out, and that is it's built on the individual customers and how well they do in this process and what their outcomes are, and it builds up. So it starts at that individual client level. The other thing, when the economists were developing the model and they were looking at the data of people who went through the system, they observed that there's a lot of variability in the types of services that are provided. So they built the model around that variability of services. So that individual service model, that is VR is what makes the variability work for this model. So it's very much tied to the core tenets of the VR program, that individual services model. And that's where the variability comes from. And that's why it can give us some causation. So I think it's really important to note that it is consistent with how we do services and how we provide what we do. The other thing I will say about The Economist is they have been dedicated to understanding how VR works. They often in the early days when we were going out, they would sit down with the agencies and say, does this make sense to you? And then they would look at the model to see what would make it make more sense in terms of telling how VR works or the outcomes of VR. So they've spent a lot of time trying to understand the system and get knowledgeable about how VR works and what the opportunities are, what the process is, so that what they're modeling is consistent with how we do business. So I think that's a key component.   Carol: I think that's really cool that you said that, Joe, about taking it back to the individualized nature of the program because VR, you know, you think about it in an aggregate, we get this big $4 billion in a lump. And, boy, each person's experience within that is so individualized. It is, you know, whether you're getting this or that, you know, are you getting educational sorts of services and access to training and post-secondary and all kinds of different things? Or are you a person on a different trajectory, and maybe you needed some medical rehabilitation type of stuff going on? You needed something completely different. Like, people have so many ways to mix and match and use the things they specifically need to get where they need to go. You probably can't do it unless you get down to that level. So that is very interesting. Now, Joe, I know we've talked about this in our team a little bit even. And I know you said you wrestled with your group, but this whole notion of return on investment or taxpayer return on investment has been a really interesting topic and is fraught with some issues itself. And I remember coming into Minnesota and the general agency director like taxpayer return on investment, and I was brand new in the program. I'm like, I don't even know what you're talking about right now, but a lot of times you tend to hear it discussed that way. But I know, Joe, you've said there's a lot of issues around this. So what are some of those issues?   Joe: It's an interesting little issue. The very first meeting we had, it was at Carver, and we had a number of people from different agencies and state rehab councils come into a meeting, and we were laying out the first model. And one of the directors at that point said, well, are you doing a taxpayer return on investment? And by that he meant returning Taxes, increase in taxes, receipts going back to the Treasury. And that was his definition of it. That was the first one. And then when we were in North Carolina at the consumer forum that we did the stakeholder and consumer forum, we got the question from some advocates and said it doesn't seem to go away. We always get that question, but the issue is what is the appropriate way to determine the return on investment for a particular type of program. And it was interesting. We got this question so often, even from some of our workforce friends that are the economists said about writing a paper to describe why taxpayer return on investment is not appropriate for a VR type of program. And they submitted it to, I think it was three, maybe four different econ journals, and some of them didn't even send it out for review. They said, this is already settled. It's not appropriate for this kind of program. So the issue is another workforce programs or human capital development. And the purpose of a human capital development type of program is to in our case, find people employment and look at that probability of employment. And then conditional on that earnings, if you've got people in your system and they're entry level, a lot of them are not going to be at the level where they pay any kind of taxes at all for several years. So you really don't have a lot to show when you do taxpayer return on investment in terms of that. Also, one of the things that we noticed when one of the studies that was done is that in some cases, and this is with a particular type of one of the particular disabilities, is the only one they looked at this with when we had some Social Security earnings available data available to us for a short while. Not only do we get people off of Social Security benefits, but we also find people that go on to Social Security benefits from being involved with VR, and that often makes them more stable. So then they can then participate in a VR type of program and be successful. But it's a long, long term process to do that. So in the short term, you're not going to show anything but about as many come on as go off. So you're really not showing that. But if you're doing what the authorizing legislation says you're supposed to do, which is get people employed, let's just take it down to a simple level and then the question becomes, are you efficient and effective in that process? And that's what this particular return on investment model is about. And that is what the economists would say is the appropriate way to look at this. Now they would call this a social welfare type of program is the category they put it in. And then human capital development. But there's other kinds of benefits that accrue to the individual. Because this model, this type of approach looks at it benefits to the individual and to the society in general, which is the individual being employed. And in this case, there are other benefits that we can't observe. Self-confidence would be a good example. Quality of life would be a good example. So in our case, what we're able to observe is how they're interacting in the workplace. And that's really the piece that we can measure. And that's where we're going with this. And the others might be important, but very few places have really figured out how to measure that.   Carol: Well, Joe, I actually I was telling Bob before we hopped on, I said, you know, I threw something in ChatGPT because I was like, all right, VR return on investment. Explain it to me. And ChatGPT it spit out. It talked about financial return on investment, you know, with employment earnings, cost savings. But it was talking about social return on investment, improve quality of life, community contributions. You know people experiencing that enhanced self-esteem, independence, all those things. And then personal return on investment with skill development, career advancement, those kind of things. It was just kind of fun to run it through and go, hey, yeah, because I know you guys have wrestled with like, what are you going to call the thing? Did you come up with like the name, The Thing??   Joe: Yes, it's interesting. I think what we came down with is that we think the vocational rehabilitation return on investment is the name we're going to stick with. And then say, you know, what we have is a human capital development project, and that's how we're measuring it or return on investment. But what we're going to have to do this is so ingrained in the culture of VR that you've got to return taxpayer dollars. Well, that's really not what VR says it's supposed to do. And so how do you get people to understand that that's not the appropriate way to look at the VR program. So we're going to have to do some education. I think about what return on investment is. And I may use your ChatGPT story...   Carol: Yeah.   Joe: To ...tell it.   Carol: Bob, I see you have something you want to jump in with.   Bob: Yes, and I think well, I have several things. One is I think the reason it's so ingrained, I think I might be wrong. Joe can correct me is because agency directors have to testify before the state legislature to get the money they want from the state legislature, right? And say the legislature, at least for a while. I don't know if they're still doing it. They're saying, yeah, but what's the return to the taxpayer on this? Why are we funding this if it's a money losing proposition Well, that's the thought process. But the problem with that is the state legislatures are kind of going against the odds. The federal authorizing legislation, you know, VR dates back to again, Joe can correct me. After World War One, when veterans came back from war and they had some severe physical injuries, and the federal government said, well, let's try to get them services to help them vocationally help them get back to work, get a job, and keep it so that they're effective in the workplace. Well, that thing was incredibly successful. So over time they said, well, this works so well. Can we expand it to other disabilities? Maybe states want to get involved in this as well. So what's happened over time is every one of the 50 states has this kind of co-funded arrangement with the federal government. And the Rehabilitation Services Administration oversees it, where they jointly sponsor these things, and it now covers many disabilities. Some states have more than one agency, one for the blind and visually impaired and one for the general. Other disabilities. So it goes back that far. And the authorizing legislation says is specifically provide services to help the individual gain and maintain competitive employment. And we're back down to the individual with that. It doesn't say to pay for itself to the fed, to repay the state or federal government for those services. So that's one thing. It's not what the metric to do it by. A second thing is, I mean, I never did like the social welfare. I'm an economist who would never call this a social welfare program. First of all, welfare has a negative connotation, even if its denotation is not negative. It's social improvement or anything. But it's really less a social more. As I said, the human capital development, that's what it's all about. And he also mentioned the issue that a lot of some things just aren't measurable. So when you mentioned financial return on investment, that's what we're talking about. Is the agency doing its job of getting people back to competitive employment and leading a better life, and maybe freeing up some of their family work to do other things. There might also be a multiplier effect in the sense that they earn more money, they spend the money. Other people, as a result, earn more money. And economists call that a multiplier effect. So that dollar has more on it. But it wouldn't get measured in this taxpayer return on investment at all.   Carol: Okay, cool. So I know you guys have made some interesting observations in reviewing the data and looking at some of the longitudinal data. What kind of things are you guys seeing?   Joe: My observation is that it concerns me that some people we've  learned recently that some of the states aren't capturing data after the fourth quarter after exit in terms of UI data. I know one state that is capturing going for that after the fourth quarter for their Social Security cases, because it helps them obtain more resources through cost reimbursement. But I think that we're underselling the value of VR when you only do the fourth quarter up to four quarters after exit. And I realize that's a lot more than we used to do. But on the other hand, it's probably not the best way to tell the VR story, because you just don't capture everything. And younger population exacerbates this. You just don't capture it with all the impact of VR can be for an individual over time. So I think that's one of the things I have seen. We had a study we did from a long time ago, from the first since I did with David, Dean and Bob, where we had a program, that transition program, and the students that participated in it were focused on post-secondary opportunities, and they were measured against the counterpart group that went in the VR system of youth. And the other kids typically went to work faster than the participants in this program. But at year six, after application, the perk students took off in terms of their employment, and the other kids just they were still employed and they were doing well. But the perk kids took off with this post-secondary approach, which is what we're being asked to do now. And you really wouldn't have told the story if you only went for five years after application. So those are the kinds of things that I'm concerned about with the longitudinal data.   Carol: Joe, so what about this to with it. You know, like especially blind agencies tend to provide a lot of the services themselves. What kind of problems are there with that and not sort of capturing the data?   Joe: We have seen that as an issue with the 2007 data set. We have in the 2012 data set, we had and our colleagues in the blind agencies were very clear that there were services that they were providing that were critical to successful employment and adjustment, but we didn't have any way to capture it. And so you're, again, you're undervaluing the impact of those agency provided services by not capturing them. And I think that's going to be critical. I think there's some requirements now that they have to be reporting some of this information, but it's a question of whether it's getting into that case management system and it becomes readily available administrative data that can be used to help tell the story of the impact of the great work that these counselors and other kinds of specialists are providing to help people become employed and adjust into their settings. Bob, you want to talk a little bit about what you're seeing in the data?   Bob: Well, yes. And now with the new data set, RSA 911, that quarterly report that all agencies have to provide and again for four quarters after closure that thing now they've made some changes and it's now required whereby types by 32 different service types they report. Did you provide purchase services during the quarter. If so how much did you provide it in-house or was it provided through a comparable benefit, some other external agency and that might have a dollar value attached to it? So we're going to use that data and see what we have. Now of course with any data set. Now I'll tell you purchase service data that's pretty reliable because they need to get their money back, right? They need to get reimbursed. They need to pay the bills. And so they track that through their accounting system very well. But the other things are and had entered often by counselors who are harried and busy and have a lot of other things to do, rather than this bureaucratic kind of form filling out, so it's only as good as the data that are put into it, and we won't know how good that is, but we'll see how much we learn. this way, hopefully we'll learn some things we didn't know.   Joe: What we have been told is that the data is not there for us to capture, and that it undervalues the kind of work that's being done. So we're hoping we can find a way to tell that story, because it sounds pretty important. And then from my personal experience in managing some of these services, I know how hard these folks work and how valuable these services are. But if you can't capture it, you're not able to tell the story.   Carol: Yep. If it isn't documented, it didn't happen.   Joe: Yeah.   Bob: That's right.   Carol: So what are the next steps on the grant and how can we get folks involved? Are you needing people to help with anything, any states or anything we've got?   Joe: North Carolina is, we're working very closely with them and they've been really good to work with. We will be once we get the prototype, I don't know what to call it. The economists are putting together the data system information so that they can begin to apply the new model and that'll be happening hopefully within a couple of months. And then once we've run the model a couple of times, we'll be asking some other people to come in sort of a national audience to take a look and hear what the model is, what it offers to get their feedback on. Yes, that would be useful or that doesn't seem to work for me much. Could you do this other thing? And then we'll also be asking them about. We'll be showing them what we've come up with for the simplified model to see if that version is going to work or if we need to be developing maybe a template RFP for them to use with a local institution that they work with, then they would be able to get the data set. So we're going to be looking at that. We may be asking folks to work with us a little bit on the capacity survey, where it talks about the training that states might be wanting to say, who can provide this kind of service, and would this be valuable to do to increase people's ability capacity? Because there's a lot of data needs out there. And I think if it would help our project, it would probably help a lot of other projects as well.   Carol: So, Joe, are you thinking about that for fall, possibly at CSAVR or something?   Joe: That's November. That should be a time when we would have an opportunity to gather some information. Yeah, because we might be ready for it by then. Of course, that might put a little pressure on the economists, but I don't mind doing that.   Carol: Yeah. Bob's looking like, oh well okay.   Bob: You love doing that, Joe. I mean, one of the things my major professor in graduate school always said, I love working on a research project where I learn something and what Joe said is exactly right. So we would take and vet our results to various agents. We may make a trip to the agency before Covid. We go and we sit down. We go through everything, explain what we're trying to do when we sell. And then they would say, that looks a little wonky or something, or did you do this? And you say, no, we didn't do that. Yeah, we could do that. Let's do it. And then we would revise the model or no, unfortunately we don't have enough information to do it. Could you collect it? You know, that kind of thing. So yeah, we keep learning things and that's what these groups are intended. That's what they're for. For our selfish purposes. That's what we like about them.   Carol: That's excellent, you guys.   Joe: So November would be good, Bob.   Bob: So you say.   Carol: Well, I'm definitely looking forward to seeing what comes out of all of this. And you were saying that the end of the grant then is in 2025.   Joe: August 31st of 25.   Bob: Right.   Carol: All right. That's coming up quick you guys, really quick.   Joe: Oh it is.   Carol: Well, awesome I appreciate you both being on today. I cannot wait to hear more as this unfolds. So thanks for joining me.   Joe: We really appreciate the opportunity.   Bob: Yes we do.   {Music}   Outro Voice: Conversations powered by VR, one manager at a time, one minute at a time, brought to you by the VR TAC for Quality Management. Catch all of our podcast episodes by subscribing on Apple Podcasts, Google Podcasts or wherever you listen to podcasts. Thanks for listening!

On this episode of The Ramp. It. Up! Podcast, avid traveler, and certified travel agent, Spencer Blomquist joins me to talk about traveling and his recovery journey. Planning a vacation can be a hassle and exponentially more so when traveling as a wheelchair user. Spencer specializes in coordinating travel for people with disabilities and shares a few tips during the interview.Ramp. It. Up!  Get to know our Guest Spencer Blomquist is a dedicated disability advocate and accomplished professional in the travel industry. Serving on several prestigious boards, including the Center for Independent Living of Northwest Florida, the NWF Rehab Foundation, and The 7 Project Adaptive Fitness Gym, Spencer is a powerful voice and influential leader in the disability community.As a brand ambassador for ABLE United in Florida, Spencer passionately promotes financial empowerment for people with disabilities. Beyond state-level advocacy, Spencer is actively involved with national disability organizations, tirelessly working to enhance accessibility and inclusivity for all.Since 2018, Spencer has been a certified travel agent with Expedia Cruises, specializing in booking accessible vacations. With a personal understanding of the challenges faced by travelers with disabilities, Spencer brings a unique and empathetic perspective to the industry, ensuring that every journey is not only enjoyable but also accommodating.A C4 quadriplegic since 2008 due to an armed robbery, Spencer has transformed personal adversity into a mission of advocacy and support. Through unwavering commitment and resilience, Spencer has become a beacon of hope and inspiration, demonstrating that obstacles can be overcome with determination and a positive outlook.In all endeavors, Spencer continues to champion the rights and needs of the disability community, striving to create a world where everyone has the opportunity to thrive.Website: https://www.expediacruises.com/en-US/SpencerBlomquist Blog: https://wheelieawesomeadventures.com/Facebook:https://www.facebook.com/spencer.blomquistYouTube: https://www.youtube.com/@WheelieAwesomeAdventuresPhone:  850-293-8548Stay Connected to the PodcastInstagram: https://www.instagram.com/ramp.it.up.podcast/Facebook: https://www.facebook.com/ZoeOnWheelz/YouTube: https://www.youtube.com/channel/UCZAnH8I6sGEf7SJ9OKw8dEAEmail: rampituppodcast@gmail.comWe want to hear from you!Tune in to the Patient Advocacy Voices Podcast todayJoin Sanofi's Eric Racine to meet the unsung heroes leading patient advocacy organizationsListen on: Apple Podcasts SpotifySupport the Show.