Navigating Live as we Know It seeks to build an educational and entertaining way to help the people around those with Special Needs better find the way to live their best, most self-determined life possible, and how to manage the challenges of the systems
55. An Anecdotal Field Guide for The Rest of Us
In this new book, Tracee offers you the tips she remembers, stories of adversity and success, to document her personal battles with self and others in a position to grant or deny life-saving tools, equipment, and the access to freedom we all hold dear but often take for granted. The author encourages all of us to use the Field Notes daily to meet success and navigate each one of life’s seemingly impossible hurdles. Topics in the book include: employment, mental health, education, family, physical health, travel, recreation, emergency preparedness, housing, and more, throughout the lens of that elephant in the room, the things no one addresses as you live a life because we to are trying to figure it all out and many of us keep the cliff notes to ourselves. How will you do any of this despite disability? It won’t be easy, but you’ll make it. Who is this book for? Anyone who could use some encouragement and real, candid talk about live with disability. Use this book to start to answering all those things that worry us but we don’t want to confront. Make a plan with this book for long-term challenges and navigating the “No’s” in life. Find what you need that no one wants to tell you, with a special section called The Parent to Disabled Child Manifesto. This book is for us all but especially anyone working with and/or raising children and young adults with disabilities, direct support, self advocates, special needs teachers, and the practitioners, caregivers, uncles/aunts and any member of society still ignorant in their thinking about the contributions and capabilities of Americans with disabilities. Sound advice through personal experience can make all the difference in the world.
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54. Vitalxchange - The Uber of Diability Resources
If you set out to climb the Himalayas it would be wise to hire a sherpa. Why, you ask? Because the climb may be treacherous and your mistakes very costly! A sherpa has been on the path many times and knows how to climb to the top with positive results. How much do you want to leave to chance? The same may be said about navigating the challenges and obstacles ever present for people with disabilities. Legal planning, financial planning, benefits planning, educational programs, work incentives (and disincentives), IEPs, Person Centered Planning, Medicaid Waivers, Social Security Disability, affordable and accessible housing, transportation.... All these added together make that Himalayan climb look like a walk in the park! If you need help, you may find Vitalxchange is the answer...or your sherpa! Vitalxchange has created a world where parents and providers caring for special needs children can partner to help children thrive.
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53. A Deep Dive into Courage
There is a gulf between changing a world and changing THE world, and the difference is the people who help build the steam needed to bring about true and lasting change to the way a society approaches a topic.
Earlier this season we discussed the life and advocacy of Bill Rush and some of the people around him on his quest for a life on his terms. We had a chance in the followup to talk with a contemporary of his, John McGill, who offered insight into the changing of the disability landscape on a local level - attending university.
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52. Advocacy and Education for Independence
Affordable, accessible housing, transportation and internet availability are serious issues for people with disabilities in just about every state in the USA. It is especially problematic in rural areas. As if these challenges weren't enough, the crew of the Disability Resource Network in Huntsville Alabama opened for business during the early days of the COVID-19 pandemic. For some, quarantine and social distancing would have been the straw that broke the poor camel's back. For Davina Patterson, Katie Toro and Deshon Washington it was just another bump in the road to success. This "new kid on the block" Center for Independent Living was strong out of the gate. They leveraged technology in the best way they could and partnered with other local and regional non-profits to create awareness of the services they provide. And Davina, Katie and Deshon have exhibited a contagious enthusiasm and optimism...all IN SPITE of these challenges. Or maybe we should say BECAUSE of the challenges they face! We are proud to bring you their story!
If you'd like to know more about this episodes guests, please check out their website HERE!
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51. It's BROKEN - Let's Fix It: Support the NADSP
Imagine engaging an architect to create plans for the perfect house to fill all your needs.... You are excited about turning this dream into a reality…but then discovering there is no one to do the excavation for the foundation. Also, there is only one carpenter to work on the frame...and that craftsman can only work 12 hours a week on your project. There is a shortage of plumbers...so you will have to make do with an outhouse until one is available. And an electrician? Sorry...only one is available, and she can work on your house for only a few hours a week. How will your house ever get built? But wait! It gets worse! You see, in the previous example we are merely talking about inconveniences affecting a construction project. The worst case is...you cannot move to your dream house anytime soon. But what if instead of a carpenter, an excavator a plumber and electrician we are talking about Direct Service Professionals needed to help you get out of bed in the morning because your disability prevents you from doing so yourself? What if there is no DSP to help you bathe, dress, or transport you to work? What if there is no one available to help you into bed tonight? Now "inconvenience" becomes "existential,” and you are faced with a huge obstacle to…just living! This is where hundreds of thousands of Americans living with disability find themselves today. They are in desperate need of help, and there is an extreme shortage of individuals trained and qualified to provide that assistance. Our conversation today is with Joseph MacBeth President and CEO of the National Alliance of Direct Service Professionals (NADSP). Joe has worked in the field of intellectual and developmental disabilities since 1983 – beginning as a Direct Support Professional. We will hear what his organization is doing on the state and national scene to help alleviate the DSP Crisis.
50. Faith Love & Courage Pt 3
Episode 3 - Life together and Changing the World
Most movements for social change are identified with a few prominent and well-known leaders. For instance, people like Martin Luther King, John F Kennedy, and Robert Kennedy, among others, are associated with the Civil Rights movement in the USA. Nelson Mandela is a name synonymous with the abolition of apartheid in South Africa. The truth is…these individuals provided a voice and a face to the movement, but without the thousands who heard them and actively responded to their cries for equality and equity for all human beings, nothing would have been accomplished. Largely unknown are the names of those individuals who actually brought about change by their activism and advocacy.
William Rush (Bill) is one of those committed individuals who responded to the call of equality and equity for all who live with disabilities. Bill was never satisfied to just obtain the assistance he needed personally to live independently and move about the community without obstacles blocking his participation. He had a strong motivation to change the world for all those living with disabilities “in a world not made for them.”
The story of Bill and Christine is told in their book Our Life Our Way. The following three podcast episodes draw on the experiences and advocacy skills developed by Bill and Chris as they fought for a life together in a world filled with physical and societal challenges unique to the disabled. Bill and Chris have much to teach all of us! We hope their story and their struggles both motivate and support you in your own journey for inclusion.