LOMAH Disability Podcast

The LOMAH Podcast is an award winning show that runs topical series deep diving into an issue for 10-12 episodes with interviews from expert guests, including self advocates. Your host, Kim, has a teenage daughter with level 3 non speaking autism who will require 24/7 support the rest of her life. Like many parents, Kim has a lot of important questions. She does not claim to know the answers for her child nor yours but does promise to search for them and share what she is discovering along the way. You will notice a striking difference in the earlier shows compared to the most recent as she has grown and evolved as a result of listening to expert guests and self advocates.

#171 - 40 Years of AAC Use

This last episode in the series is right in step with how all good things should conclude and that is with a bit of fun. You are about to listen in on a conversation with plenty of laughter and bad jokes that I had with a man who has been using AAC since the 80’s and who has been living in his own place with hired supports for 20 years. We travel down memory lane recalling accommodations that thankfully have been replaced with better options but also those that have stood the test of time. About the Guest: Tim Jin Tim Jin is a disability rights advocate with cerebral palsy. He is the Assistant Director of Communication Rights for Disability Voices United, an organization focused on improving education and services for those with developmental disabilities. Jin advocates for improving the accessibility of technology-aided communication for those with speech-related disabilities. Jin has been a member of boards for organizations such as Ability Central Philanthropy, CommunicationFIRST, and the Self-Determination Program Local Advisory Committee for Regional Center of Orange County. Jin has been using an augmentative and alternative communication (AAC) device since elementary school. He graduated from California State University, Long Beach, with a bachelor’s degree in speech communication. To contact Tim regarding AAC training and inclusion for your staff or organization, email tim@jinonline.net This episode is the last in a series focusing on expanding the boundaries often placed around AAC use.

07-12
27:52

#170 - Asserting Authority & Directing Care as an AAC User

AAC users often have to, first, assert authority over their self care staff. Our guest who exclusively communicates via AAC shares tips and tricks she has learned over the years on hiring and training staff. About the Guest Hannah Foley is the Product & Service Development Intern and an Ambassador at PRC-Saltillo, where she develops training and implementation supports for PRC-Saltillo language systems. She also represents PRC-Saltillo at speaking engagements and other events. Hannah presents at school districts across the country on effective inclusion and augmentative and alternative communication (AAC) implementation practices within homes, communities, and schools of those with complex communication needs. She is currently attending the University of Illinois at Chicago to complete her Assistive Technology Certification with a concentration in AAC for education. Hannah aims to pursue a professional career in AAC training and implementation to facilitate collaboration and effective training for implementation of AAC among all members of support teams.

07-05
53:08

#169 - AAC in Medical Settings

Communication between provider and patient is a crucial component of quality care which is why extra thought and planning need to be arranged for augmentative and alternative communicators. About the Guest: Jessica Gormley, Ph.D., CCC-SLP of The Patient-Provider Network Jessica Gormley, PhD, CCC-SLP is an Assistant Professor, Speech-Language Pathologist, Research Coordinator and Interim Director in the Department of Speech-Language Pathology at the UNMC Munroe-Meyer Institute. Dr. Gormley earned a Bachelor of Science degree in Speech and Hearing Handicapped from the State University of New York at Geneseo, a Master of Arts in Speech-Language Pathology from the State University of New York at Geneseo, and a PhD in Communication Sciences and Disorders from Pennsylvania State University. She provides inpatient and outpatient augmentative and alternative communication (AAC) services as well as completes AAC research and program development activities. Her research and clinical interests center upon improving interactions among individuals with complex communication needs, their families, and health care providers through the development and evaluation of AAC tools and trainings. Dr. Gormley is a co-organizer for the Patient-Provider Communication Network along with Tami Altschuler and Rachel Santiago. Dr. Gormley has co-authored several peer-reviewed articles and book chapters on the topics of supporting AAC in acute care, personalization of patient-provider communication, and child-parent-provider communication interactions. Links to Mentioned Content: Patient Provider Communication Network Bimonthly Zoom Call Article on Creating a Culture of Communication Widget Health downloadable resources Patient Provider Communication Network Downloadables Patient’s right to access to communication via the Joint Commission and other policies supporting patient communication Article about system changes in hospitals and other articles on AAC in medical settings

06-28
32:19

#168 - Using The Entire AAC Device

The internet has swung the door wide open for alternative and augmentative communication users, yet often the creative use of these tools is never introduced. It’s time to expand how AAC users maximize devices as well as how to navigate online communities that they now have access to via AAC. About the Guest: Tiffany Joseph Known as Nigh Functioning Autism on instagram, Tiffany has 3 neurodivergent children and is autistic. Tiffany’s ultimate goal is for nonspeaking individuals to all have early access to full communication and inclusion in educational settings from early childhood and beyond. She is an intern at Reach Every Voice, training to be an instructor and communication and regulation partner for nonspeaking or minimally speaking individuals of all ages. In today’s conversation Tiffany will use a combination of spoken voice and AAC voice. This episode is the 4th in a series of 10 focusing on expanding the boundaries often placed around AAC use.

06-21
43:41

#167 - AAC Slang, Slurs, Swearing...and Censorship

Many AAC users are dependent upon others to program language onto their device. Despite what research shows regarding common language in various age groups, it is common practice to censor slang, slurs, and swearing even for adults.   About the Guest: Hali Strickler is an AAC services coordinator for TechOWL at the Institute on Disabilities at Temple University. She received both her Bachelor and Master of Arts in Speech, Language, and Hearing Science from Temple University. Hali is a Pennsylvania and New Jersey licensed and American Speech-Language-Hearing Association certified speech-language pathologist. Links to Mentioned Content: Article - A Child’s Garden of Curses by Kristin L. Jay and Timothy B. Jay Relevant Episodes: #116: Touching of Self and Others from July, 2020 in the Complicated Behaviors Series #77: Your Body, Your Boundaries from June, 2019 in the Health Series This episode is the 3rd in a series of 10 focusing on expanding the boundaries often placed around AAC use.

06-14
44:26

#166 - AAC with Spoken Communication

Brittany Dube is and autistic partial AAC user who shares the stigma she often experiences when choosing AAC over her spoken voice despite how AAC makes her more communicative. Links to Mentioned Content: Etsy has several sellers creating personalized communication boards. Brittany’s came from the seller Coatney Creations. The quote referenced came from an article about partial AAC use in communicators with speech written by Alyssa Hillary Zisk and Elizabeth Dalton. It was published in April, 2018 edition of The Autism in Adulthood Journal. This episode is the 2nd in a series of 10 focusing on expanding the boundaries often placed around AAC use.

06-07
35:27

165 - More Than Requests: Using AAC for Authentic Communication

Often, AAC is used for nothing more than to make requests. While requesting wants and needs is important, AAC can offer much more to complex communicators and those who wish to know them. About the Guest: Kate McLaughlin, M.S., CCC-SLP Kate McLaughlin is a speech-language pathologist specializing in AAC - alternative and augmentative communication for individuals with complex communication needs. She believes that autonomous communication, inclusion, and self-determination are fundamental human rights. She partners with individuals with complex communication needs and their families to support their AAC journey. Kate is a certified member of the American Speech-Language and Hearing Association and holds licensure as a speech language pathologist in the state of Connecticut. She has worked in home, school, and clinic settings with clients of all ages. Kate trains parents and professionals on proven strategies to support their learner’s authentic and autonomous communication. Links to Mentioned Content: Kate’s website, The AAC Coach Follow Kate on Instagram and Facebook Kate’s course “Authentic AAC” Talking Mats Kim’s IG live from May 20, 2022 authentically communicating with Miranda Relevant LOMAH Podcast Episodes : Literacy Series in Season 5: Episodes 131 - 146 from Spring 2021 Episode 148 from September, 2021: Finding Clarity Among So Many Therapy Options

05-31
37:58

164 - AAC Series Intro + A Few Life Updates

The new series will focus on "Doing More With AAC". This episode gives a peek at the topics that will be covered with expert guests, many who are AAC users themselves. The second half shares a few life updates relevant to the LOMAH tagline "Planning the future for our daughter with disabilities and inviting you to fumble through it with us". There has been some great news regarding the next 3 years (Miranda's transition years ages 19-22) as well as an update even closer to home.    

05-24
17:15

#163 - A New Way to Find and Fund Adult Services

Most adult supports are chosen via eligible providers on HCBS waiver lists. However, some states have been toying with a new method that offers more flexibility and choice. In this conversation we explore what families have and have not liked about the newly rolled out Self Determination Program and why our family has decided to move away from provider lists and into this new option of funding supports. About the Guest: Sonni Charness, Founder of Guidelight Group Sonni Bendetson Charness brings over a decade of experience serving teens and adults with developmental disabilities and is an expert in community integration and employment supports. Sonni leads the team at Guidelight Group and also works personally with clients.  Sonni's work on transition-to-adulthood and employment has been published in the Journal of Vocational Rehabilitation and in Research and Practice for Persons with Severe Disabilities. Sonni has been a featured expert on the LOMAH podcast and as a presenter at countless conferences including TASH, the Supported Life Conference, and the Statewide Conference on Self-Determination.  Sonni is a member of the Board of Directors for California APSE, the state chapter of the nation’s leading advocacy organization promoting employment for people with disabilities. Sonni is a Certified Employment Support Professional (CESP), and is trained in Person-Centered Thinking and Independent Facilitation.  Sonni obtained her master's degree in special education at Vanderbilt University, where she specialized in transition-to-adulthood and employment outcomes for students with moderate/severe disabilities. Sonni earned her bachelor's degree in child development from Tufts University. Links to Mentioned Content Sonni on the LOMAH Podcast for the Transition Series - Episode #95 - School to Adult Services: Filling the Gaps Disaability Voices United Self Determination Program Connect Zoom Meetings Presentations on the San Gabriel / Pamona Regional Center YouTube channel presented by Guidelight Group.

03-08
55:15

#162 - Conservatorship vs Supported Decision Making

Conservatorship has long been the route to providing supports to disabled individuals with they turn 18. However, a new option called supported decision is an alternative that supports the person in making their own decisions rather than giving up rights through the conservatorship option. About the Guest: Lauren Butterworth, Esquire PLLC received her Bachelor of Science from Penn State in education and was a teacher prior to returning to school for her law degree. She now owns her own law firm specializing in guardianship, powers of attorney, estate planning, trusts, and educational advocacy. Mentioned Links: Financial Planning Series - LOMAH Podcast episodes 101 - 112 National Resource Center for Supported Decision Making Special Needs Alliance Laurens FaceBook page

03-01
51:45

#161 - 18 Years Later: What We Got Right and What We Would Have Done Differently

Geege Taylor, who you may know from the reality TV show Leave it to Geege, joins Kim for a reflective chat. They both have been parenting autistic children for over 18 years and have a list of things they feel they did really well as well as a few things they would have done differently.    About the Guest: About the Guest: Geege Taylor Geege Taylor is an autism advocate and writer who produces and stars in Leave it to Geege, a reality series on The Lifetime Network. The show celebrates autism and follows the zany adventures of her family, including her 19 year old non speaking son, “Pootie,” along with a lively cast which features three other young adults with autism. She makes her home in Athenns, GA with her children and describes herself as a “happy hermit” who loves to get under blankets, eat junk food, and watch TV. You can connect with Geege on IG @geegetayor or FB @angiegeegedudley Leave it to Geege can be streamed on your cable network, the lifetime app, or at  mylifetime.com To hear Geege discuss dignity and hygiene, scroll LOMAH Podcast episodes from Season 3 and find Episode 78: Dignity and Hygiene from June, 2019.  

02-22
49:28

#160 - Survival Mode

Our family barely survived and is just now emerging from a hard two years that where spiraling into aggression, self injury, and rapid regression for Miranda. It took intention to make it through to the other side as a caregiver. This episode shares some of the struggles and impact they had on Kim's mental and emotional health. Joining and contributing to the conversation is Mary Susan McConnell. Kim and Mary Susan swap caregiving stories and strategies that point to the truth that hard seasons are to be expected in the journey so it is important to have strategies that protect our physical, mental, and emotional health.  Mary Susan's heart beats big for caregivers and she is continually creating and sharing content to help us be our best selves for our kids. She has created a free downloadable book, a podcast, an online corse for entrepreneurs, an online corse to help caregivers reimagine their world, daily words of encouragement delivered to earbuds each morning, downloadables such as a free coloring book, a master folder for the most important caregiving information, and a  list of small things we can do (think twinkle lights!) to bring more joy in the day to day, 1:1 coaching opportunities, and more! Find all of these things at marysusanmcconnell.com

02-15
55:13

#159 - Our Empty Nest Plan: 4 Years Out

We have set a deadline for Miranda to be independent of us, her parents by the age of 22. While she will always require significant care and continual supervision, we have a 5 year plan to phase those supports to others while at the same time honoring her life as a young adult. We are now 4 years out. Listen to the 5 years out episode published January of 2021 before this one where we are 4 years out. The 5 years out episode from last year goes into the details of the overall plan and the why's behind those decisions. This episode shares how things are coming along and what will need to be accomplished this year in order to stay on track.

02-08
25:56

#158 - Life Update & Mini Series Intro

In this first episode of year/season 6, the first 10 minutes lay out what is to come in the new mini series. The last 15 minutes are spent sharing personal situations that have impacted the family.

02-01
28:02

#157 - Therapy Series Recap

The therapy series included 10 interviews challenging us to consider the why and how behind therapy choices. This episode offers snippets from each conversation. Thus concludes our 5th year and 5th season. The LOMAH Podcast will return in January with a life update about the many big changes taking place as we march closer and closer to Miranda's adult years. There is a lot happening! Late January or early February will bring the start of a new series. Be sure you have tapped subscribe and/or follow on your podcast app so those episodes find their way to you. Wishing you the happiest of holidays! 

11-16
23:35

#156 - Therapy From a Client's Perspective

What does therapy look like and feel like from the perspective of the client? A woman in her 20’s who has been in therapy since infancy shares her experiences and observations of how things changed as she aged and what she feels is important during the teen to adult transition years. About the Guest: Hanna Foley Hannah Foley is the Product & Service Development Intern and an Ambassador at PRC-Saltillo, where she develops training and implementation supports for PRC-Saltillo language systems. She also represents PRC-Saltillo at speaking engagements and other events. Hannah presents at school districts across the country on effective inclusion and augmentative and alternative communication (AAC) implementation practices within homes, communities, and schools of those with complex communication needs. She is currently attending the University of Illinois at Chicago to complete her Assistive Technology Certification with a concentration in AAC for education. Hannah aims to pursue a professional career in AAC training and implementation to facilitate collaboration and effective training for implementation of AAC among all members of support teams.

11-09
55:34

#155 - Supporting Families in Rural Settings

Families living in rural and frontier setting may live hours away from the nearest specialist and have a small pool of therapists and providers from which to choose. How can a support system and work force be formed for these families? Links to Mentioned Content: Telehealth and telepractice regulations vary by state. Therapy-focused national associations track these regulations, by state. AOTA State Actions Affecting OT in Response to COVID-19 Virtual School-based Services via Telehealth ASHA Tracking of State Laws and Regulations for Telepractice and Licensure Policy Telepractice Services and Coronavirus/ COVID-19 ----- The National Bureau of Health Workforce  ECHO – Extension for Community Health Outcomes:  Find your state Assistive Technology Program F2Fs  Parent Training and Information Centers (PTIs)  LEND programs  About the Guests: Molly Kimmel, OTR-L & Martin Blair, PhD Molly Kimmel is the Program Director of MonTECH, within the Rural Institute for Inclusive Communities in Missoula, Montana. MonTECH provides technology, support, and services that focus on improving the quality of life for individuals with disabilities across the state. After graduating from Gonzaga University and an early career in adult education, Molly decided to pursue occupational therapy (OT) as an avenue to help adults and children more fully participate in meaningful, necessary, and valuable activities. She received her master’s degree in OT from the University of Washington in 2010 and has practiced at Providence St. Patrick Hospital in Missoula for nearly 11 years. Molly transitioned to the role of Program Director at MonTECH in April of 2020 and has carried the program forward, managing pandemic-related challenges while still meeting the evolving assistive technology needs of Montana families. In addition to her role at MonTECH, Molly is the Montana State Coordinator and OT faculty for URLEND (Utah Regional Leadership and Education in Neurodevelopmental Disabilities), a collaborative and interdisciplinary training program for students and professionals working with children with special health care needs. In April of 2021, Molly was elected as the President of the Montana Occupational Therapy Association. She is passionate about neurodevelopmental rehabilitation, building connections to provide best practices in care, and helping people achieve greater independence in all aspects of life. Understanding a work/life balance is the cornerstone of any good OT, so Molly also spends plenty of time traveling, floating down Montana rivers, and tending her community garden.  Dr. Martin Blair began his career as a special education teacher. Following that experience, he spent the next two decades at Utah’s University Center for Excellence in Developmental Disabilities (UCEDD), the Center for Persons with Disabilities (CPD), as director of the Utah Assistive Technology Program, Chair of Utah’s Interagency Outreach Training Initiative, the policy director of the National Center on Disability and Access to Education, the Associate Director of the Center for Technical Assistance for Excellence in Special Education, and the CPD’s Assistant Director for Policy and Development. In these various roles he has built trusting, collaborative relationships with colleagues from a variety of disciplines in university, community, state and national circles. In 2013, Dr. Blair assumed leadership of the University of Montana Rural Institute for Inclusive Communities, Montana’s UCEDD. Dr. Blair has presented over 60 papers to national and international audiences and authored dozens of professional articles. He has generated nearly $25 million in grant and contract funds to support his efforts. He currently serves as a Co-Chair of the Public Policy Committee of the Association of University Centers on Disability. Dr. Blair’s work is focused on improving the quality of services and supports for individuals with disabilities and their families by working closely with trainees, Center staff, university faculty and administration, state and federal legislators and administration officials, and those who are the primary beneficiaries of the services and supports that he and his colleagues provide.

11-02
48:33

#154 - The ABA Debate

Doctors tell parents of autistic kids not just to do ABA therapy but a lot of ABA therapy and as early as possible.  Meanwhile, autistic self advocates are loudly saying under no circumstances should ABA be a therapy option. Who is right? About the Guest: Brian Middleton, M.Ed, BCBA, LBA Brian Middleton started Bearded Behaviorist as an effort to make understanding behavior fun and interesting. Dedicated to open-source education, Brian is a founding member of the Open-Source Educational Resources special interest group of ABAI. His social media pages and website are dedicated to dissemination of behavior science as well as pushing for inclusion of trauma-informed care standards in Applied Behavior Analysis and other human services. He  is the host of the Oh Behave! Podcast, and open-source licensed podcast. Brian is a proud autistic adult, loving husband, avid lover of sci-fi/fantasy, a “nerd” with something better to do, enjoys the great outdoors, cooking, musicals, puns, spending time with friends and dogs, and making up silly songs. He is also the Chief Creative Officer for Legend Masters LLC, a print and design company. He holds a Masters of Education and a Post-Master Certificate in Applied Behavior Analysis. After being a special education teacher for 7 years, Brian became a BCBA. He is working to make Trauma-informed Care the default approach within the field, and believes the path forward is to own the mistakes the field has made and commit to do better. This episode is part of a 12 episode series in Season 5 rethinking the what, when, where, why, and how of the therapies we choose. 

10-26
47:19

#153 - The Need for Niche Therapy

Complex needs necessitate a more specialized approach toward therapy. Often the “Big 3” of speech, OT, and PT are not specialized enough to address complex needs. This episode takes a look at how niche therapies fold in the The Big 3 and where trends seem to be headed. About the Guest: Laura Hayes, MS, CCC-SLP Laura Hayes is a speech-language pathologist with over 12 years of augmentative communication experience in both school and medical settings.  Laura has presented locally and at state, national, and international conferences such as the Missouri Speech-Hearing Association, ATIA, and the Pediatric Perspectives Conference. She has been published and supported both inpatient pediatric and educational augmentative communication research.  She currently hosts a podcast for her school district titled: “Innovative AAC Solutions”. She loves providing training, implementation resources, and guided direction to help with success using AAC.  She can be followed for more resources and ideas on Instagram @aac_innovations. Links to Mentioned Content: Kim’s conversation w Chris Bugaj on the Talking With Tech Podcast about technology Inclusive Learning 365 book about integrating tech Chickadee AAC Sarah Gregory Rachel Mandell Episode w Jacklyn Googins where she discussed research based approaches to therapy This episode is part of a 12 episode series in Season 5 rethinking the what, when, where, why, and how of the therapies we choose. 

10-19
43:20

#152 - Education and Therapy Customization

If the traditional format of education during the day and therapies in the afternoon are not advancing your objective, you CAN break the mold. Listener turned guest, Jess Fraga is venturing out of the box this year. Rather than slot her twin boys into what is already established with education and therapies she is creatively customizing a day that is focused on how to best meet goals. She shares how her boy’s days are structured, where she found people to help, utilizing resources for funding, and suggested educational materials.   Links to Mentioned Content: Blossom and Root Curriculum Call of the Wild and Free Special Book Episode 108: Finding Disability Financial Resources IEP and homeschooling considerations for each state This episode is part of a 12 episode series in Season 5 rethinking the what, when, where, why, and how of the therapies we choose. 

10-12
42:09

JT Ayers

Kyle Guerin and what Pacific Coast Dental Network are doing with special needs Dentistry is nothing short of remarkable! great interview

07-25 Reply

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