***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?Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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!Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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 showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Moving out of a family home is one of life's "exciting, sad, happy, and scary" events. There are so many changes that come with having a place of your own. But...there is also growth and independence. There are new things to discover and experience - for parent care providers and for the young adult who is spreading their wings. Todays story is about Will McAllister and his transition to his own apartment and a new independent life! It is also a story about parental faith and steadfast love in the ability of their son to adapt and blossom in the world. So join us on our magical journey into the mysterious realm of living independently and all the exciting opportunities that it brings Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

We all have two basic needs as human beings.  One is to be authentic, to live our lives in a manner that reflects our true selves.   The other human need is to be accepted within a community.  When these two need conflict, when the community to which we belong does not accept our authentic self, the most common reaction is to "mask" that part of our identity that puts us at risk of being excluded from our association with other community members.  The MDRC mission is to "... cultivate disability pride and strengthen the disability movement by recognizing disability as a natural and beautiful part of human diversity while collaborating to dismantle all forms of oppression."  And while it is not possible for MDRC, or any advocacy organization, to reform the entire world,  they are committed to creating a space for self-discovery, to cultivate community, and to develop pride.  And they have developed an admirable track record in doing so.  Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Many people seem to have a "problematic" relationship with sleep.  We take medications to keep us awake...and we take medications to make us sleep.  But sleep...a GOOD night's sleep, is essential to our psychological and physical  health.  Autism is one of those disabilities that can manifest itself in a broad spectrum of sensory issues...and often the ability to sleep through the night is seriously affected.   Most of us know what it feels like to suffer from sleep deprivation, because if a child is not able to sleep, the odds are that neither are their parents.  zPods® is a company dedicated to creating a solution for this problem.  Co-founder George Bailey explains how zPods® create a calming, comfortable and safe space designed for better sleep.To learn more about zPods® be sure to stop by their websiteSupport the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Individuals with intellectual and/or developmental disabilities (I/DD) and their families often find themselves dealing with complexity and even intentional obfuscation as they navigate the path of Medicaid eligibility and benefits That is why we find it exhilarating when along that path we find individuals with expertise and empathy. I have discovered both those qualities in Marianne Huff. Although Marianne's highest level of expertise is in the mental health arena...the rules governing Medicaid are, with just a few exceptions, the same we deal with in the I/DD world. I have known Marianne for several years. About 5 years ago she provided invaluable information when we found ourselves in a benefit eligibility dispute with our local Community Mental Health organization and were anxiously facing an appeal before an Administrative Judge. Marianne's advice and guidance resulted in a positive outcome for our son Lliam. I believe you will find this episode enlightening and come to realize we also have allies and advocates within the community of professionals working MHAM. They Listen and they Care!Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

"The best laid plans of mice and men often go awry!" is an old and unfortunately true statement. And "best laid plans" often "go awry" for two reasons. 1) poor planning...or no planning, and 2) people don't work collaboratively to create solutions that work for all concerned. Both are a result of human error. And both are avoidable. But we all know that within families and friends differing points of view on how to solve a problem can wreck havoc on the best relationships. And that is most unfortunate, because it is different points of view that often help create the best plans. But that rarely happens without deliberate effort. And when it does happen it is cause for celebration! So...how do you plan for the future anticipating the kerfuflfes that are likely to ocurr? One way is to work with an experienced and compassionate attorney. Someone who knows the "ins and outs" of disability planning and is sensitive to your needs. The other is through a trusted 3rd party who can "step into the gap" before a conflict arises and empower individuals to recognize and solve conflict before it sinks the ship! We hope you enjoy today's episode about creating collaborative trusts as much as we enjoyed creating it for you! Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

Voting is a constitutional right for an overwhelming majority of Americans, but the reality is people with disabilities, racial minorities and economically challenged individuals face far more obstacles to voting than most voters.  Unsubstantiated allegations of mass voter fraud were circulated and amplified after the 2020 presidential election and conspiratorial politicians laid plans for another, more devastating voter fraud scheme.... to suppress voting by mail and drop box through heightened scrutiny, including picture ID voter verification.  These extra requirements on top of the transportation and accessibility challenges already faced by individuals with disabilities have caused tens of thousand of ballots to be disqualified in Texas primary elections held in anticipation of the 2020 midterm elections.  The voter suppression laws sought by many states are nearly identical in nature and very similar to the "Secure the Vote" ballot initiative that was being circulated in Michigan.  Voting is a constitutional right!  No one should ever have to endure an obstacle course challenge to obtain and cast a ballot in America.Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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 showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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 showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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 showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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 showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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.Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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.Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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.Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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.Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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.Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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.Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!

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!Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook page and if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!