Sign up to save your podcasts
Or
Share ABCs of Disability Planning
Share to email
Share to Facebook
Share to X
Share to email
Share to Facebook
Share to X
Or
ABCs of Disability Planning
ABCs of Disability Planning episodes
- A Zebra's Guide to Disability Advocacy
Sarah Semnyetzky is the author of "A Zebra's Guide to Disability Advocacy". Focusing specifically on the domains of academia, medical care, and interpersonal relationships and support networks, in the book Sarah focuses on helping disabled individuals and their loved ones navigate their own, diverse journeys.
She explores these topics using her personal and professional experience, and insight into the complexities of the disabled community. She analyzes how these complexities impact our needs as disabled individuals, using step-by-step guidance, detailed explanations, and personal anecdotes to illustrate her points. She also includes a specialized guide for those with ADHD, imparting impactful advice and skill-building techniques to help readers thrive in academia, the workplace, and beyond.
In this episode, I ask her to share what's happened since she published her book. What she's learned, and what, if anything, she would have done differently. My goal is to share the perspective of someone with invisible disabilities and help you see the world from at least one person's point of view.Connect w/ Sarah:
Website: https://scsemnyetzky.wixsite.com/my-siteEmail: [email protected]
Blog: https://sarahofember.wordpress.com/blog/
Phone: (772) 300-4882
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Blog - https://ejorgensenwordpresscom.wordpress.com
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
X (Twitter): @NeedsNavigator
45 min - How will I know? The "impossible choice" - Palliative or Hospice Care
Juli and Chris Henderson have lived through one of the toughest times any parent can face, the loss of their son. In this interview, we have a very candid discussion about what they wish they'd known. The catalyst for this discussion was Juli's blog post "How will I know?".
Dr. Chris Henderson is a Critical Care Intensivist at CHRISTUS Santa Rosa (CSR) Westover Hills Hospital in San Antonio, Texas, and serves as a Member of the South Texas Regional Advisory Council Pandemic Medical Operations Workgroup. He is Board Certified in Critical Care, Pulmonary Medicine, Internal Medicine, and Sleep Medicine. He presently serves as President of Medical Staff at CHRISTUS Santa Rosa Hospitals, President of CSR Family Health Center, and a member of the Board of Directors of the Family Health Center. Additionally, Chris is the Director of Inpatient Services for the program and Chairman of its Clinical Competency Committee and serves as an Adjunct Assistant Professor for the University of Texas Health Science Center at San Antonio (UTHSCSA) Department of Family and Community Medicine. He entered his present position after more than 26 years of service in the United States Air Force Medical Corps, retiring in July 2011 with the rank of Colonel.Juli Henderson is a highly trained vocalist, respected voice teacher and owner of JH Voice Studio, physician’s wife, mother of five adult children, and newly minted grandmother. She grew up moving frequently as a military dependent but has called San Antonio, Texas home for 36 years. The In Our Arms Blog is her passion project, launching in February 2021 to share the story of Robert. As the mother of a child with disabilities who passed at the tender age of eighteen, Juli’s writings give hope to hundreds of readers, including a private Facebook group where members share resources and support. She is extending her impact by her involvement in resource projects such as her recent launch of the In Our Arms “Breathe” candle in collaboration with a purpose-driven brand, School Scents. When not writing or teaching, Juli volunteers in the community on nonprofit boards and speaks in churches and schools about her “Life unexpected".Website: https://www.inourarms.blog/
Facebook: @InOurArmsBlog
Instagram: @inourarmsblog
Link to episode transcript - https://docs.google.com/document/d/1l3GH0VqpUhKbkbG-9FrgYt1nX5ma_0rR/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
Link to Juli's first interview - https://podcasters.spotify.com/pod/show/abcs-disability-planning/episodes/In-Our-Arms-Blog---Juli-Henderson-e1eh8hb
Hospice interview with Carlos Graveran - https://spotifyanchor-web.app.link/e/Vd12e2DeWDb
Five Wishes interview - https://spotifyanchor-web.app.link/e/GwyGY7MeWDb
Introduction to Burial Insurance with Brenda Hager - https://spotifyanchor-web.app.link/e/JCE9jiSeWDb
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Blog - https://ejorgensenwordpresscom.wordpress.com
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
X (Twitter): @NeedsNavigator
58 min - Empowering people and families impacted by Duchenne muscular dystrophy
Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey.
Dan & DMD book - https://amzn.to/3QvfAV8Transcript to the episode: https://docs.google.com/document/d/1uWsfzSjthW_69wVRFUdRCiG_GSz2gqGw/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
Connect to learn more:
Web: https://www.jettfoundation.org/
Email: [email protected]
Facebook: https://www.facebook.com/jettfoundation/?ref=aymt_homepage_panel
IG: @jettfoundation
Parent Project Muscular Dystrophy - https://www.parentprojectmd.org/
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
Twitter: @NeedsNavigator
56 min - Remove barriers and understand what helps your child thrive
BeMe empowers Autistic individuals, their families, and care teams with the tools they need to thrive. BeMe combines medical, behavioral, and environmental factors in an insight-generating app designed specifically to support Autistic children. It was founded by and is comprised of a team very active in Autism care and advocacy. They are an organization including parents and caregivers, domain experts, and Autistic individuals. They know and have lived through many struggles and joys and come from a place of understanding. BeMe.ai is effortless to use, combining wearable technology and a smartphone app to simplify data entry. Their powerful AI, combined with their unique approach to organizing, transforming, and sharing data, allows you to gain new insights into your child’s health, behavior, and overall progress.
Connect to learn more:Website: https://www.beme.ai/
Email: [email protected]
Facebook: https://www.facebook.com/BeMe.aiInc
YouTube:
https://www.youtube.com/@bemeai1689As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Blog - https://ejorgensenwordpresscom.wordpress.com
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
X (Twitter): @NeedsNavigator
41 min - Connecting families affected by disability to recommended businesses
Empowered Together - Connecting families affected by disability to recommended businesses. They envision a world where tools and accommodations are in place for all people to meaningfully access and participate in their communities. While parenting her daughter with a developmental disability, Sarah Spear learned firsthand how isolating that journey can be and that other parents on similar journeys were feeling all alone. She recognized the value of sharing support and knowledge with one another and Empowered Together was born.
Connect to learn more:
Empowered Together (ET) Website: https://empoweredtogether.us/
ET App: https://app.empoweredtogether.us
ET Instagram: https://www.instagram.com/empoweredtogetherco/
ET Twitter: https://mobile.twitter.com/empowered2gethr
ET Facebook: https://www.facebook.com/empowered2gether
ET LinkedIn: https://www.linkedin.com/company/empoweredtogether
ET YouTube: https://www.youtube.com/@empoweredtogether
Sarah’s Twitter: https://twitter.com/SarahSpearIt
Sarah’s LinkedIn: https://www.linkedin.com/in/shine/
Transcript: https://docs.google.com/document/d/1yVKqodMwSw0M6rnL1sH-nMgvhPwqAmod/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
Twitter: @NeedsNavigator
33 min - Videos to teach daily living skills - PICKLE System
Videos to teach daily living skills - PICKLE System
Pickle System's mission is to improve the lives of individuals with autism and developmental disabilities by providing a personal, accessible, and hands-off resource utilizing video models, image-based content, and evidence-based guidance.
Acquisition, maintenance, and generalization of daily living skills may increase independence, quality of life, employment outcomes, and post-school education opportunities for individuals with disabilities. Daily living skills are comprised of three domains - Personal, Domestic, and Community.Connect to learn more:
Web: https://www.picklesystem.com/
Email: [email protected]
FB: https://www.facebook.com/profile.php?id=100093284371069
Transcript: https://docs.google.com/document/d/1jjsypJoveqxoO_J5h7UNcUXaRhtiDK0R/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
Twitter: @NeedsNavigator
---
Send in a voice message: https://podcasters.spotify.com/pod/show/abcs-disability-planning/message
Support this podcast: https://podcasters.spotify.com/pod/show/abcs-disability-planning/support
Get full access to Waypoints at waypoints.substack.com/subscribe40 min - Videos to teach daily living skills - PICKLE System
Videos to teach daily living skills - PICKLE System
Pickle System's mission is to improve the lives of individuals with autism and developmental disabilities by providing a personal, accessible, and hands-off resource utilizing video models, image-based content, and evidence-based guidance.
Acquisition, maintenance, and generalization of daily living skills may increase independence, quality of life, employment outcomes, and post-school education opportunities for individuals with disabilities. Daily living skills are comprised of three domains - Personal, Domestic, and Community.Connect to learn more:
Web: https://www.picklesystem.com/
Email: [email protected]
FB: https://www.facebook.com/profile.php?id=100093284371069
Transcript: https://docs.google.com/document/d/1jjsypJoveqxoO_J5h7UNcUXaRhtiDK0R/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
Twitter: @NeedsNavigator
---Send in a voice message: https://podcasters.spotify.com/pod/show/abcs-disability-planning/messageSupport this podcast: https://podcasters.spotify.com/pod/show/abcs-disability-planning/support40 min - Meet. Support. Advance. Raising awareness of another Rare Disease - TBRS Community
Meet. Support. Advance. Raising awareness of another Rare Disease - TBRS Community
Tatton Brown Rahman Syndrome (TBRS) is a rare genetic disease caused by pathogenic variants (previously called mutations) in the DNMT3A gene and for that reason, it is also called DNMT3A Overgrowth Syndrome.Individuals with TBRS have overgrowth—typically, tall stature, increased weight, and large head circumference (also known as macrocephaly)—mild to severe intellectual disability, and subtle but distinctive facial characteristics.
There are a variety of other symptoms that are also associated with TBRS, such as low muscle tone, behavioral and mental health issues, orthopedic problems, cardiac defects, and autism, but not all individuals have every clinical finding reported, and the syndrome varies considerably in its severity.
As of 2021, roughly 250 people have been diagnosed with TBRS. It is not clear how common the syndrome is, but many more individuals are likely to be diagnosed as whole genome sequencing methods become more accessible. There is currently no cure for TBRS, and clinical care is focused on managing the particular clinical findings in each individual.Episode Transcript: https://docs.google.com/document/d/11ZW665x8eYUYe7Pb1BtYr1r2laITkooz/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
Connect to learn moreWebsite: https://tbrsyndrome.org/
Email: [email protected]
Facebook: https://www.facebook.com/dnmt3aovergrowthsyndrome/
X (formerly Twitter): @TBRSCommunity
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
Twitter: @NeedsNavigator
Resource store (free downloads too) - https://www.teacherspayteachers.com/Store/True-North-Disability-Planning
---
Send in a voice message: https://podcasters.spotify.com/pod/show/abcs-disability-planning/message
Support this podcast: https://podcasters.spotify.com/pod/show/abcs-disability-planning/support
Get full access to Waypoints at waypoints.substack.com/subscribe49 min - Meet. Support. Advance. Raising awareness of another Rare Disease - TBRS Community
Meet. Support. Advance. Raising awareness of another Rare Disease - TBRS Community
Tatton Brown Rahman Syndrome (TBRS) is a rare genetic disease caused by pathogenic variants (previously called mutations) in the DNMT3A gene and for that reason, it is also called DNMT3A Overgrowth Syndrome.Individuals with TBRS have overgrowth—typically, tall stature, increased weight, and large head circumference (also known as macrocephaly)—mild to severe intellectual disability, and subtle but distinctive facial characteristics.
There are a variety of other symptoms that are also associated with TBRS, such as low muscle tone, behavioral and mental health issues, orthopedic problems, cardiac defects, and autism, but not all individuals have every clinical finding reported, and the syndrome varies considerably in its severity.
As of 2021, roughly 250 people have been diagnosed with TBRS. It is not clear how common the syndrome is, but many more individuals are likely to be diagnosed as whole genome sequencing methods become more accessible. There is currently no cure for TBRS, and clinical care is focused on managing the particular clinical findings in each individual.Episode Transcript: https://docs.google.com/document/d/11ZW665x8eYUYe7Pb1BtYr1r2laITkooz/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
Connect to learn moreWebsite: https://tbrsyndrome.org/
Email: [email protected]
Facebook: https://www.facebook.com/dnmt3aovergrowthsyndrome/
X (formerly Twitter): @TBRSCommunity
National Organization of Rare Disease: https://rarediseases.org/
Morgan's Wonderland: https://morganswonderland.com/
Interview with Child Neurology Foundation: https://spotifyanchor-web.app.link/e/6aavsNjXVCb
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
Twitter: @NeedsNavigator
Resource store (free downloads too) - https://www.teacherspayteachers.com/Store/True-North-Disability-Planning
---Send in a voice message: https://podcasters.spotify.com/pod/show/abcs-disability-planning/messageSupport this podcast: https://podcasters.spotify.com/pod/show/abcs-disability-planning/support49 min - Reach. Climb. Go. If you're a wheelchair user get your iBot Personal Mobility Device
Reach. Climb. Go. If you're a wheelchair users get your iBot Personal Mobility Device. One device, with 6 modes. Go beyond powered mobility in this revolutionary power wheelchair.
The world is not as accessible as it should be. The iBOT® PMD provides a unique multi-modal experience in personal mobility. Custom-fit to each user, with an iBOT® PMD the world opens up.From Mobius Mobility's website: If the ATV had a quieter, smarter cousin, its name would be the iBOT® PMD. The iBOT® PMD engages four large drive wheels while automatically keeping the seat level. This allows users to traverse varied terrain, to go beyond typical backyard exploration. Hills and inclines are everywhere. Dirt, mud, gravel, snow – the world is covered with the stuff. Explore it all in an iBOT® PMD.Connect to learn more:Website: http://www.mobiusmobility.com
Phone: 1-833-346-4268
Email: [email protected]
Facebook: @IBOTbyMobiusMobility
IG: mobiusmobility
YouTube: Mobius Mobility
TikTok: mobiusmobility
Episode Transcript: https://docs.google.com/document/d/1kfPdk7asXmJ3Y46inULcOP6kboB6iuXa/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Facebook: @TrueNorthDisabilityPlanning
Twitter: @NeedsNavigator
58 min
About ABCs of Disability Planning
From the publisher's feed
Frequently families like mine don't know what's available to help us, we're too focused on getting through our day-to-day. But even if we had time, we would need to know what to look for. It's my mission to introduce a new organization or individual serving those with disabilities every week.
All views and opinions represented are my own. I am not writing on behalf of Capital Motion or Visible National Trust. Neither Capital Motion nor Visible National Trust endorse or in any other way support this content and podcast. This podcast is wholly owned and operated by me, Eric Jorgensen.