Claim Ownership

Author:

Subscribed: 0Played: 0
Share

Description

 Episodes
Reverse
***WARNING***The topics in this episode might not be suitable for everyone. This episode covers the period of time during which one of the twins passes. This is an intense and very raw subject that is addressed directly. Please use your best judgement. Join Steve, Kerry, and Alex as they discuss the events that brought their family into the disability community and eventually led to this very podcast. No matter how your journey with disability began, we all have a story, and we all share certain traumas. We are sharing our story to help others know they're not alone. Our goal is to fight the isolation that seems to soak into the very bones of the disability community. How can our loved ones ever find a community if we cannot build bridges with each other?
Part one of a special miniseries that will be aired on key dates, Navigating Life with Lliam is a walk through of the experiences and circumstances that have defined our own journey and eventually led to Navigating Life as we Know It!
The first look at Navigating Life as we Know It. This is a "special" episode where Steve and Kerry talk a little about what can be expected in upcoming episodes. Support the show
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.Support the show
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.Support the show
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.Support the show
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! Support the show (https://ko-fi.com/nlawki)
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.
Episode 3 - Life together and Changing the WorldMost 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.
Episode 2 - Love and the Audacity of Change 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.
Family, Faith, and the Seed of Self AdvocacyMost 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.
It is not ever comfortable discussion what happens after someone dies. But when it comes to the death of care providing parents conversations need to happen and plans must be made. Legal, financial and Medicaid Planning are important, of course, but living a full life is more than providing these core necessities.  Life as we know it (and aspire to live it) includes meaning, purpose, identity and being “seen” by the members of your family...whether that “family” is the product of biology or personal selection.  This does not happen by accident, especially when one or more members of the family live with intellectual and/or developmental disabilities.  The “how” of inclusion needs to be on the table for discussion before the “when” becomes the present.
When you have a child with a developmental or intellectual disability your life gets complex.  Often it becomes overwhelming.  Navigating a path to find the right resources is essential.  Today's episode is about two Medicaid Waivers that provide valuable supports, The Michigan Waiver for Children and  the Michigan Waiver for Children with Serious Emotional Disorders (SED).  We also cover the basics of Michigan's Children's Special Health Care program.  If you don't live in Michigan, your home state will have very similar programs available.  We also will discuss the value of using an Independent Facilitator for Person Centered Planning.  Everything starts with a good plan, and the trained professionals who facilitate the person centered planning process guides that will help you make the most of the resources available for your child to enjoy a full life to the greatest extent possible!  I hope you enjoy our show!  Please reach out to us with your comments, questions and suggestions by emailing us at contact@NLAWKI.com.
Imagine yourself on a vacation to a country where your native language is not spoken. Let's say Portugal. You do not know how to speak or read Portuguese, but you are given a map to help you get around.... but the map (of course) is printed in Portuguese. You can see the roads and have a vague idea of where you are going, but the map does not tell you what the BEST route is. And you won't know what lies between your current location and your destination because....YOU CAN'T READ PORTUGUESE! If you get lost it will be hard to ask for directions unless you can find someone who speaks your language. Are you feeling a little stressed out? State Medicaid regulations are not written in Portuguese, but amid all the other confusion about benefits, qualifications, forms, releases and assessments that must take place to qualify and receive Medicaid benefits the forest can often get obscured by all the trees. What is the difference between a Habilitation Waiver, a MI Choice Waiver, and a MI Health Link Waiver? Which one is the best fit for you or your loved one...and how do you decide (If you have been given a choice)? How does a Person-Centered Plan determine Medical Necessity for an individual with I/DD. Today's episode will try to answer these and more important questions for you! And if you have any questions that are not addressed, please contact us at contact@NLAWKI.com. We would love to hear from you!
Our show today is “The Different Flavors of Medicaid Waivers” …. but you are also going to hear a lot of discussion about person-centered-planning (PCP) and the proper use of two assessment tools associated with person centered planning process... the Supports Intensity Scale (SIS) and the Psycho-Social Assessment (PSA). Why??  Because assessment tools, person-centered plan and Medicaid Waivers all work together for benefit of the individual at the center of the plan.To help explain how all these planning steps work together, you will hear us use a freight train analogy. The engine is the person-centered plan. It pulls the whole train! The engineer is the person at the center of the plan who determines the train’s route and the cargo in the box cars. The engineer also gets to decide where the train goes and its travel schedule! But…. if the engine does not do its job properly everything behind it is…. sort of…. pointless. The train never leaves the station!Medicaid waivers are a critical component of the person-centered plan because they provide the bridges, switches, and the special side rails necessary for the engine to travel its route and fulfill the engineer’s goals.  All Medicaid waivers provide similar benefits but a few of them provide unique “side rails” that allow an engineer with more challenging circumstances achieve a fully engaged self-determined life! This is information YOU NEED TO KNOW!Today we will speak about the Michigan “State Plan” (aka 1915b), and the MI Habilitation Supports Waiver (Hab Waiver) in addition to the SIS, the PCA and the PCP (what would we ever do without acronyms?)  We hope today’s podcast will help you make the best use of these tools, because it is all about providing engineers the opportunity to live a fully engaged and self-determined life.
Growing up can be hard. Especially the teenage years. And even more so if the teenager in question has social skill deficits. As humans we are all "hard wired" for relationships with other humans. Individuals living with autism often want to develop skills necessary to make and keep friends. They need to learn the skills necessary to navigate various social situations in which they may not feel comfortable. And they also must learn how to manage conflict and rejection. Parents and care providers may feel clueless on how to help teens develop the social skills necessary to engage with neuro-typical peers. But where there is a will.... there is a way! The Social Skills Group at BRAINS in Grand Rapids, MI recently concluded their Social Skills Group summer session based upon a program developed at the Semel Institute for Neuroscience and Human Behavior at UCLA. The Program for the Education and Enrichment of Relational Skills (PEERS®) provides evidence-based social skills treatment to preschoolers, adolescents, and young adults with autism spectrum disorder (ASD), attention deficit/hyperactivity disorder (ADHD), anxiety, depression, and other socio-emotional problems. PEERS® isn't a diagnostic tool. It is a tool kit designed to help individuals develop social skills through didactic lessons and role play demonstrations as well as providing participants opportunities to practice these skills through socialization activities. And IT WORKS! I hope you enjoy today’s presentation! The development of social skills has the power to change and enhance the life experience of everyone who seeks to belong, to be seen, and to engage with the world around them.
I'm probably showing my age...but some of you might remember the routine of "defragging" your computer to allow it to work more quickly and efficiently. It was once described to be as allowing your computer to take some time to put files away and "clean up" it's desk. This was it was able to work better. Well, wouldn't it be nice to defrag your mind on occasion? Just to put away the loose ends and clutter that we tend to accumulate and bog down our brain and sap our energy? Well, you can defrag your mind with a simple process called meditation. It's not a "new age" phenomenon or a fad. As a matter of fact, it's now pretty much mainstream in Western society and is used to improve people’s lives from boardrooms to locker rooms. From grade schools to grad schools. And to help overcome emotional as well as physical pain. There's no costly equipment to buy, no deep philosophical concepts to master and not even any specific right way to do it. Our new series on practicing mindfulness, called The Mindful Minute will help you defrag your mind and hopefully also help you improve your outlook on life, love, work and the common everyday stressors that plague the lives of people living with disabilities and the people they love. I hope you enjoy The Mindful Minute! Be well and be kind, Steve 
"There's no place like home!" In the Wizard of Oz Dorothy said these words and clicked the heels of her ruby slippers three times. Instantly she was transported back to her farm home in Kansas. This makes for an enduring story...but getting into the right home presents a little more of a challenge today. Especially if you live with an intellectual and/or developmental disability. You have many obstacles to contend with, such whether you want a roommate(s), where you will live...house, apartment, condo. Is it better to buy (if the funds are available) or lease? What is the appropriate level of support needed and who will provide supports? How will I fit into the community? Do I want a job or volunteer work to live a full life? Just to name a few. Just about all of these decisions need to be made by the person with disabilities along with their family and other valued advisors. Sound like a lot of work, doesn't it? Well NESTIDD is an organization that has some good news to share with you! When it comes to selecting the right house, at the right location, with all the needed structural modification, that also meets YOUR definition of "affordable" NESTIDD can make the process much easier for everyone! NESTIDD will even mow the lawn, shovel snow, fix the leaking faucet and provide regular home maintenance. Our interview today is with Andrew Parker, a co-founder and CEO of NESTIDD, a Chicago based company serving the disability community with affordable housing options! Andrew has some exciting information to share with us!
Everyone has heard the phrase "forgive and forget."   That isn't always possible, or even advisable.  It is important to remember. To recall emotional pain that has played a destructive role in the course of your life and in your relationships.  With these memories it becomes even more important to forgive, or to ask forgiveness, so you may convert the hidden pain your have experienced in your past from suffering to growth.  A very empathic person, Shannon has accumulated great knowledge and experience in the process of healing emotional pain through forgiveness.  She is eager to share her leanings and experiences by coaching others in the journey from suffering to growth.Follow Shannon's Journey here
Remember Dorothy and the Wizard of Oz? She had an impossible task. First retrieve the broom stick of the Wicked Witch and deliver it to the Wizard of Oz who would grant her wish to return to her home in Kansas. Doesn't life feel like that sometimes? Impossible task? Improbable goals? Flying Monkeys all around you? Attempting to find and secure affordable, community based, appropriately supported housing during a skyrocketing real estate market makes snatching a witch's broom stick look easy, doesn't it? The families with Oasis Community of West Michigan have persisted and learned a few things on their trip down the Yellow Brick Road. Most of all we discovered there is power in numbers and when a growing group of families with diverse talents and skills work together the impossible and improbable become attainable! Today we visit with co-founders Grace Smith, the president of Oasis Community and Lynn Surdock, secretary who, along with "yours truly," set off on the Yellow Brick Road 13 years ago. Just like the Tin Man, The Cowardly Lion, and the Scare Crow you will learn that we all have immense powers to achieve our housing and independence goals.... if you start by believing in the mission and have faith in our own abilities to make it happen!
Comments 
Download from Google Play
Download from App Store