LOMAH Disability Podcast: Recent Episodes
LOMAH
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.
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.
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.
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
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.
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.
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.
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
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.
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.
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
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.
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
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.
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.
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!
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.
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.
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.
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.
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.
Adulthood often comes with a narrowing of therapeutic options that unfortunately are becoming even more thinned out due to recent policy. In this episode we pick up from a line of thought introduced in episode 150 regarding supports that affirm Neurodiversity and how value is ascribed to disability communities. Ableist lines of thinking are having a catastrophic impact on support services for the most vulnerable. These impacts in policy will be very hard to reverse once implemented and many advocates are unaware that the advocacy movements they are supporting may actually be ableist at the core and incredibly harmful to those we wish to champion
About the Guest: Ashley Kim Weiss Ashley is an entrepreneur and disability advocate who currently serves as the National Coordinator for Together for Choice. She is also the President & CEO of Elevare Community, a non-profit organization whose mission is to create supportive residential communities for adults with intellectual and developmental disabilities. Prior to Elevare, Ashley was the co-founder and Executive Director of Villa de Vida, a non-profit organization building an affordable housing community for adults with developmental disabilities in San Diego. Ashley holds a bachelor’s degree in Finance and Management from the University of Illinois, Chicago, and a Master’s degree in Business Administration from the Claremont Graduate University’s Drucker School of Business.
Ashley joined the show in Season 2 for an in depth conversation on the Fair Labor Laws and HCBS scrutiny. Find that episode in the Advocacy Series, Episode 67: HCBS Waiver, Fair Labor Laws, and Advocating for Choice.
What does it look like to support self injurious behavior in a way that is affirming to the individuals neurotype? Are the approaches being suggested in the neurodivergent affirming therapeutic practices movement just wishful thinking or are they game changers for the many looking for help in this area?
We conclude with a conversation about what self determination truly looks like when considering independent living outcomes and goals.
We highly suggest listening to this episode with a copy of the document created by OT's for Neurodiversity. You can download it for free here. Without the download this conversation will lack the same level of depth and understanding because we refer to the document often without specific descriptions.
About the Guests: Greg Boheler, MSOT and Jacklyn Googins, MSOT Greg is an autistic MOST graduate from UNC Chapel Hill, co-founder of B3 Coffee, and co-founder of OTs for Neurodiversity. Greg leverages his diverse skill set, his divergent way of thinking, and an OT background in his work as a consultant, disability advocate, and a ‘narrative shifter’. A skeptic by nature, Greg believes in the importance of questioning the way things have always been done and challenging ableist assumptions embedded within the OT profession. Learn more about Greg here.
Jacklyn (she/her) graduated from UNC Chapel Hill’s Master’s of Occupational Therapy program in August 2021. Jacklyn is the co-founder of OTs for neurodiversity, a paradigm-shift in social media advocacy platform and the co-founder of B3 Coffee, a nonprofit that provides social and vocational opportunities for people of all abilities. She plans to carve a non-traditional path as an OT interested in inclusive workplace practices, neurodiversity in higher education, and post-secondary transition planning. She identifies as neurodivergent and is dedicated to advancing social justice through her involvement in community-level initiatives.
Links to Mentioned Content: * We highly recommend listening to this episode while referring to this document
* Podcast Episodes #49 & #50 with Erin Sheldon: Person Centered Planning and AAC
* Podcast Episode #39 on Restraint & Seclusion
* Podcast Episode #145 with Jordyn Zimmerman: Thoughts From A NonSpeaking Autistic on Literacy & Communication
* Film about Jordyn Zimmerman -
This is Not About Me
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.
New methods of therapy are beginning to take hold that emphasize neurodivergent affirming practices. What does this even mean and how does it expand or change the scope of traditional therapeutic focus? This is the first of two episodes on the topic.
About the Guest: Jacklyn Googins, MSOT Jacklyn (she/her) graduated from UNC Chapel Hill’s Master’s of Occupational Therapy program in August 2021. Jacklyn is the co-founder of OTs for neurodiversity, a paradigm-shift in social media advocacy platform and the co-founder of B3 Coffee, a nonprofit that provides social and vocational opportunities for people of all abilities. She plans to carve a non-traditional path as an OT interested in inclusive workplace practices, neurodiversity in higher education, and post-secondary transition planning. She identifies as neurodivergent and is dedicated to advancing social justice through her involvement in community-level initiatives.
Mentioned Content: * OT’s for ND Teachers Pay Teachers Site * Neurodiversity-Affirming Versus Ableist Practice with Transition-Aged Clients - Please download this free chart in preparation for part 2 of the conversation happening in Episode 150. * OT’s for ND Facebook Page * OT’s for ND Instagram Page
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.
From the start, referrals and advice and options abound. How do we make smart decisions and put boundaries around therapy so as to choose the best option and know when it’s time to bail.
About the Guest Kimberly Richey is a former librarian, researcher, massage therapist and Rolfer with over 20 years of experience. She is also on a unique parenting journey with her son, Eli, who has disabilities. Kimberly’s goal is to support other parents navigating and advocating for their children with disabilities. She loves a good podcast and ginger kombucha! You can find her @uniqueparentingjourney on IG or at uniqueparenting.co .
Kimberly has offered a free download of the Action Map discussed in the show to help bring clarity to therapy choices.
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.
The most common settings for occupational, physical, and speech therapy are clinics, schools, homes, and in the community. This episode explores the pros and cons of each and introduces the new series where we rethink the what, when, where, why, and how of therapies we choose to use.
About the Guest: Sara Hall, OTR/L Sara Hall is a pediatric occupational therapist and the owner of SOAR Pediatric Therapy, a community-based private practice specializing in unique and tailored therapy services to children of all ages and diagnoses. SOAR’s emphasis is on empowering parents and providing education to parents, caregivers and teachers for effective carryover and to best support children in all environments. With over 20 years experiences, Sara has worked across many settings, including school setting, clinics, home health early intervention, and community-based settings. She specializes in sensory integrative approaches, self-regulation, emotional regulation, reflex integration, and also has certification for completion of STAR Institute Sensory Processing Disorders Level 1 Mentorship and Astronaut Training.
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.
In this final episode of the literacy series, Kim shares how she is implementing into Miranda's literacy instruction what the guests have taught and what she has learned from the book Comprehensive Literacy for All.
Along with specific episode/guest mentions from the series and page references from the book Kim shares:
- How at the beginning of the series it was confusing to understand the way literacy and communication were and were not the same when using a speech generating device.
- What happened when she learned and implemented strategies for emergent rather than conventional stages of literacy development.
- What types of lessons she is using to teach the emergent writing areas of working with words, and writing with full keyboard. What types of lessons are being used to teach the transitional strategies of shared reading, independent reading, word study, and reading comprehension.
- What was the easiest and what has yet to be tried.
The take away is to think of the elements of a comprehensive literacy program (as listed on page 205 of the book) as several buffets. Each buffet has several teaching options. To get started, simply go to the buffet and put something on your plate. When you are ready for more, return and grab more. Give yourself and your learner grace. Just start with one thing. Bite what you can chew. Repeat.
She was denied access to appropriate educational opportunities and a robust communication system for the first 18 years of life. But now, she has a degree in education policy and is a grad student studying curriculum instruction. A self advocate shares what it was like to live with trapped thoughts for 18 years and what was helpful and harmful on her journey toward communication and literacy.
About the Guest: Jordyn Zimmerman, B.Ed. Jordyn is a graduate student of education at Boston College studying Curriculum and Instruction with an emphasis on severe disabilities. Before graduate school, she completed her bachelors degree in education policy at Ohio University, as well as a minor in communication studies, and certificate in law, justice, and culture. She founded the seventh inclusive collegiate cheer team in the nation under Generation Spirit (formally The Sparkle Effect), served on the student senate, and was a finalist for the National Speech and Debate Association Student of the Year. She was a public policy intern for the National Disability Rights Network in Washington DC, and served as mentor, teaching assistant, and art instructor for an autism school for over 3 years.
As a nonspeaking autistic student who was denied access to effective augmentative communication until she was 18 years old, Jordyn has personal experience challenging the educational status quo. An avid advocate, Jordyn is on the board of directors for Communication FIRST and is passionate about ensuring every student is able to access effective communication and exercise their right to a truly inclusive education. Follow Jordyn on twitter and visit her website to learn more about Jordyn, including links to her publications, information on speaking engagements, and media appearances.
Despite what research tells us about time learners need in emergent literacy environments, learners with CVI and significant disabilities are often expected to immediately jump into conventional strategies. This episode shares emergent literacy strategies, specifically in writing, for learners who have difficulty seeing and who have significant physical impairments.
About the Guest: Gretchen Hanser, PhD Dr. Hanser has worked in the field of assistive technology and literacy for students with significant disabilities for over 20 years. She is an educator and an occupational therapist. Her primary focus has been on augmentative and alternative communication and literacy for students with the most significant disabilities. She has worked in a variety of educational settings developing model classrooms, developing school based assistive technology centers, providing teacher and related service provider trainings, participating in assistive technology assessment teams and working directly with students and staff in the classroom. Gretchen has taught university classes and presents nationally and internationally on these subjects. She is currently the Director of Assistive Technology at the International Academy of Hope in New York City.
Links to Mentioned Content * Articles for Closing the Gap * Comprehensive Literacy for All by Karen Erickson and David Koppenhaver * Article by Karen Erickson on what to do everyday with emergent learners (coming soon) * Order of teaching phonological awareness (coming soon) * Teachers Pay Teachers alphabet book * Jane Farrall’s Pinterest page and blog post
If it’s not in the IEP then there is a good chance it won’t be an educational priority. Comprehensive literacy involves several areas of instruction. What should assessments and goals look like when using comprehensive literacy approaches toward literacy?
About the Guest Stephanie Spadorcia is the chair of the Teaching and Learning department, which consists of Early Childhood, Elementary. Middle School, High School, and Special Education programs. Her research and teaching focuses on literacy instruction for students across the disability continuum; assessment of reading and writing; and using technology to support literacy instruction. She has published articles and book chapters, and presents nationally. She is a researcher with the Center for Literacy and Disability Studies at UNC at Chapel Hill, conducting research and development on literacy instruction for students with disabilities. She does work in schools in providing literacy instruction for all students, and the role of assessment in a literacy program. For information on her counseling and coaching services visit www.stephaniespadorciaconsulting.com
This is the 13th episode in a series focusing on the importance of comprehensive literacy approaches for students with significant disabilities.
Bringing all learners, regardless of disability, to a place of literacy is going to require specialized skill sets from the therapy team, leadership from the special education teacher, involvement of para professionals, and follow through at home. This episode offers insight from a public high school education team that have discovered how bring it all together for comprehensive literacy instruction.
About the Guests: Ashley Larisey is a licensed Speech-Language Pathologist and clinical educator. Ashley’s work experiences over the past 11 years include public and private therapeutic day schools, speech/language clinics, and early intervention. Ashley also serves as an adjunct clinical supervisor at Saint Xavier University and teaches a module specific to the use of technology in the field of Speech/Language Pathology. Ashley has extensive experience working with children and adults who use Augmentative and Alternative Communication (AAC) systems, and has presented at local and national conferences on AAC.
Lauren Sheehan is a special education teacher with over thirteen years supporting students with complex communication needs. She has an undergraduate degree in Special Education and Masters Degrees in Curriculum and Instruction and Special Education. She also has a certificate in Assistive Technology. Some of her past settings include private, in-home therapy for young children with Autism and the public school district supporting students with low-incidence disabilities. She is also an adjunct faculty instructor at Saint Xavier University. Her focus continues to specialize in the area of accessing the curriculum for all students, alternative access, supporting AAC users, assistive technology and her new found love and interest in comprehensive literacy instruction. Lauren has presented at Closing the Gap, ATIA, and Illinois State University.
This interview is part of a 15 episode series in season 5 focusing on literacy instruction for students with significant disabilities.
Changes require new ideas and ways of thinking. When considering literacy instruction and the teams responsible, where is the path of least resistance? This episode is a brainstorming session yielding ideas such as whole team vs segmented IEP writing, how to spearhead a comprehensive literacy movement in your school, and how Covid may have introduced models of instruction that bring more consistency to each child’s team.
About the Guest: Christopher R. Bugaj, MA CCC-SLP Joining us is Christopher R. Bugaj, MA CCC‐SLP is a founding member of the Assistive Technology Team for Loudoun County Public Schools. Chris co-hosts the Talking With Tech podcast featuring interviews and conversations about augmentative and alternative communication and has hosted The A.T.TIPSCAST; a multi‐award winning podcast featuring strategies to design educational experiences. Chris is the author of The New Assistive Tech: Make Learning Awesome For All, published by the International Society for Technology in Education (ISTE). Chris is the co-author of Inclusive Learning 365: EdTech Strategies for Every Day of the Year (which is available for pre-order now) and The Practical (and Fun) Guide to Assistive Technology in Public Schools both of which are also published by ISTE. Chris co-authored two chapters for a book published by Brookes Publishing titled Technology Tools for Students with Autism. Chris co‐produces and co‐authors the popular Night Light Stories podcast which features original stories for children of all ages. Chris has presented over 500 live or digital sessions at local, regional, state, national and international events, including TEDx.
This interview is part of a 15 episode series in season 5 focusing on literacy instruction for students with significant disabilities.
Many educators are required by their district to use prepackaged curriculum sets. While these sets are very user friendly, they often do not follow a comprehensive literacy approach to learning and assume reading level equates thinking level. As a result, many learners are either left behind or lack access to age appropriate materials and cognitive concepts.
About the Guest: Don Johnston, M.S. Don didn’t read his first book until the 9th grade after he was inspired by a very special teacher. He learned to make “movies in his mind” which was the key to his learning. This was influential in the visual supports in Readtopia. Don has wanted to bring visual learning to other students his whole life. Now it’s a reality! Don made Readtopia his full-time passion, driving the development forward. He embedded himself in many Readtopia videos, talking directly to students on-location from around the world.
Links to Mentioned Content * Readtopia * In addition to Readtopia, Don and his team have created a variety to literacy materials to support comprehensive literacy instruction including First Author, Snap & Read, CoWriter, Quizbot, and UPar * Download a free copy of Don’s book, Building Wings * For the parent pricing of Readtopia call the office at 847-740-0749
This episode is part of a 15 episode series in season 5 focusing on literacy instruction for students with significant disabilities.
Comprehensive literacy instruction at the emergent stage includes shared reading, predictable chart writing, alphabet and phonological awareness, writing, and self directed reading. Comprehensive literacy instruction at the conventional stage includes reading comprehension, word study, writing, and self directed reading. This episode gives a fly on the wall look at how to put all of these aspects together to support literacy instruction should you have your learner for the entire day, or only at bedtime.
About the Guest: Kim Rankin of Hold My Words Kim is a mother of eight and grandmother of four. Her twenty-eight consecutive years as a homeschool mom has given her opportunity to be a lifelong learner. Most recently, the needs of her youngest child, Nathaniel, has pushed her into the AAC world and given her reason to explore teaching literacy to a complex communicator. She is a frequent online contributor and speaker at events focused on AAC and literacy.
Links to Mentioned Content: * Kim’s website * @holdmywords on Facebook, Instagram, and Pinterest * Comprehensive Literacy for All by Dr. Karen Erickson and Dr. David Koppenhaver * Pictello * Talking AAC conference
This episode is part of a 15 episode series in season 5 focusing on literacy instruction for students with significant disabilities.
Is there a part of you doubting literacy is truly possible for ALL learners regardless of degree of disability? Or, perhaps you are on the other side of the ring trying to convince others that lacking the ability to see, or move extremities, or speak does not exclude literacy possibilities. This conversation addresses common belief barriers and removes them with a new vision from an educator who has experienced the truth that literacy is truly possible for ALL.
About the Guest: Dr. Caroline Musselwhite Dr. Caroline Musselwhite is an assistive technology specialist with more than 45 years of experience working with children and adolescents with significant disabilities in a variety of settings, including Head Start, clinics, developmental day programs, homes, and the public schools. Dr. Musselwhite has written a number of textbooks and “how-to” books on a range of topics, and has also authored many books and software programs for youth with disabilities. She has presented thousands of workshops throughout North and South America, Australia, Europe, and Africa, and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication. Honors include: Foundation Fellowship (West Virginia University), Educator of the Year (ARC, North Carolina), Honors of the Association, (North Carolina Augmentative Communication Association), and DiCarlo Outstanding Clinician Award (North Carolina Speech-Language-Hearing Association), and ISAAC Fellow.
Links to Mentioned Content: * Dr. Musselwhite’s website is filled with information, tips, and tricks, including how to make the page fluffers she mentioned. * Dr. Musselwhite’s Teacher Pay Teachers store where you can download a variety of customized and original educational materials. * The internet is heavily populated with many of Dr. Musselwhite’s webinars. A google search of her name will direct you to dozens of clips. * Literacy for All in Canada * Comprehensive Literacy for All book by Karen Erickson and David Koppenhaver * Readtopia * Episode 50 of the LOMAH Podcast about self determination strategies with complex communication users with Erin Sheldon
This episode is part of a 15 episode series in season 5 focusing on literacy instruction for students with significant disabilities.
Given the right accommodations everyone is capable of reading and writing, even those with the most significant physical disabilities. This is the first of 3 episodes tucked into our 15 episode literacy series that will focus specifically on learners with physical disabilities. Here, we learn of several tools that make literacy instruction accessible and how to choose the best accommodations.
About the Guest: Gretchen Hanser, PhD Dr. Hanser has worked in the field of assistive technology and literacy for students with significant disabilities for over 20 years. She is an educator and an occupational therapist. Her primary focus has been on augmentative and alternative communication and literacy for students with the most significant disabilities. She has worked in a variety of educational settings developing model classrooms, developing school based assistive technology centers, providing teacher and related service provider trainings, participating in assistive technology assessment teams and working directly with students and staff in the classroom. Gretchen has taught university classes and presents nationally and internationally on these subjects. She is currently the Director of Assistive Technology at the International Academy of Hope in New York City.
Links to Mentioned Content * SETT framework * Article found at Closing the Gap * This blog post from Jane Farrell provides examples of several alternative pencils * Another blog post from Jane Farrell * Files for flip charts and eye gaze frames on the Center for Literacy and Disabilities Studies website * Dynamic Learning Maps module on emergent writing * Dr. Hanser’s Teachers Pay Teachers resources (coming soon) * Online books to connect with a switch: Tar Heel Reader, Public Library, Epic Books, Book Flix, and Tumble Books * Readtopia
This episode is part of a 15 episode series in season 5 focusing on literacy instruction for students with significant disabilities.
It is important for learners with disabilities to have ample time in emergent reading and writing skills so as to build a solid platform for conventional literacy strategies. How do you know when that platform is ready to support more complex literacy instruction? This episode answers that question and lays out the areas to focus on when teaching conventional reading strategies, specifically for learners with disabilities.
About the Guest: Dr. Sally Clendon Sally Clendon, PhD is a speech-language therapist with expertise in literacy instruction for children with complex communication and learning needs particularly those who use augmentative and alternative communication (AAC). Sally completed her PhD at the Centre for Literacy and Disability studies at the University of North Carolina at Chapel Hill in 2006. Since then Sally has held academic appointments in Australia and New Zealand. She is currently a Senior Lecturer in Speech and Language Therapy in the Institute of Education at Massey University in Auckland. Sally presents nationally and internationally and has worked consultatively with several schools across New Zealand to implement a comprehensive approach to literacy instruction for their students. Sally looks forward to sharing her passion for literacy and all that she has learned from working alongside teachers and students to ensure that ALL children have access to the communication and learning opportunities they need.
Links to Mentioned Content: * Comprehensive Literacy for All by Karen Erickson and David Koppenhaver - relevant for this episode are chapters 6 (Whole-to-Part Model), Chapter 7 (Comprehension Instruction), and chapter 10 (Making Words) * Making Words by Patricia Cunningham * Emergent Literacy Assessment in Children With Autism Spectrum Disorder Who Have Limited Verbal Communication Skills: A Tutorial * List of on level age appropriate books for older learners - Pinterest page and a list on Jane Farrall's website
This show is part of a 15 episode series in season 5 focusing on literacy instruction for students with significant disabilities.
Learners move through 14 stages of writing as they progress. This episode focuses on the earlier stages of writing and how we can best support learners with disabilities in moving through each while avoiding common mistakes.
About the Guest: Jane Farrall Jane Farrall is a speech pathologist and special educator passionate about literacy, AAC and assistive technology. After 30 years in the disability and assistive technology field, she has lots of practical experience working with people with a range of abilities. Jane has worked as both a therapist and literacy teacher. She has also worked as an assistive technology specialist and is currently working as an independent consultant, running workshops and consulting with schools around Australia. Her consultancy works focuses on implementing AAC and comprehensive literacy for all students.
Links to Mentioned Content: * Jane has two websites that are a dream for anyone interested in deep diving into literacy instruction techniques. At www.janefarrall.com one will find workshops, presentations, online corses, blog posts, resources, and a way to contact Jane should you wish to utilize her consulting services. At www.comprehensiveliteracy.com one will find education on implementing emergent and conventional literacy methods as well as AAC. * Developmental Writing Scale - explanation and examples of each of the 14 levels * The Do’s & Don’ts of Writing
Often learners with disabilities are not provided ample opportunities for emergent literacy skills to solidify. This episode presents 4 questions to identify if our learner needs more time with emergent literacy strategies and several practical applications to build emergent reading skills.
About the Guest
Sofia Benson-Goldberg PhD, CC-SLP works as a research assistant at the Center for Literacy and Disability Studies. Prior to starting her PhD studies, Sofia had her dream clinical job working, with children, teenagers, and young adults with severe physical and cognitive disabilities with complex communication needs at a small private practice in Northern Colorado. Since joining the CLDS, Sofia has been a research assistant on Project Core and Tarheel Shared Reader among other projects. She looks forward to continuing her academic career with a post-doctoral fellowship at the CLDS on Project Open.
Links to Mentioned Content:
- Comprehensive Literacy for All by Karen Erickson and David Koppenhaver
- Shared Reader is a project that uses Tarheel Reader but built in supports for adults to implement shared reading. Especially check out the professional development modules to learn more about how to implement shared reading.
- Project Core was a project aimed at creating supports for teachers/school teams in supporting students with significant cognitive disabilities in accessing communication all day, every day. Professional development modules are free and cover a range of topics regarding communication and emergent literacy routines.
- Tarheel Reader is a free website full of books that can be accessed by a variety of access methods. Thousands of titles, really great for shared reading and independent reading/exploration.
- Dynamic Learning Maps Professional Development
This interview is the 3rd of a 12 in the series focusing on literacy instruction for students with disabilities.
Find Sofia on Instagram @sofia_phd_slp
Find Kim on Instagram @journey2lomah
Literacy instruction has historically used mostly verbal strategies so when learners are non speaking how is literacy supposed to be taught? This episode addresses a common literacy instruction mistake used on learners utilizing speech generating devices.
About the Guest: Tina Moreno, M.A. CCC-SLP is a speech-language pathologist with the Cuyahoga County Board of Developmental Disabilities in Cleveland, Ohio. She earned her undergraduate degree from Kent State University and attained her Master's degree in Speech-Language Pathology from Cleveland State University. At the CCBDD, Tina serves individuals 3 and up in a continuum of settings, including homes, schools, workplaces, community residences and day programs. She evaluates the communication needs of students from preschool through transition years with an emphasis on AAC assessment and implementation, training, and collaborating with educational teams and families. She presents on the topics of AAC and literacy at national conferences. She is inspired to help ensure everyone can communicate, read and write. Tina is mom to Mateo, a 21 year-old AAC user. With her friend Gina Cunningham, she is Co-Director of Camp ALEC, a weeklong, overnight summer camp that focuses on literacy and AAC designed for children with complex communication needs offered in Grand Rapids, MI each summer. There, educators receive intensive training under the direction of Drs. Karen Erickson and David Koppenhaver in evidence-based assessment and instructional strategies in literacy for children with complex communication needs.
Links to Mentioned Content: * Camp ALEC * Comprehensive Literacy for All
This show is part of 12 episodes in season 5 focusing on literacy instruction for students with significant disabilities
The tide is beginning to shift regarding how literacy is approached for students with disabilities, specifically those with complex communication needs. The first step is exploring what we believe to be true about students with disabilities. What are the dangers in assuming literacy is not possible? On the flip side, is assuming competence too simplistic? We will discuss these ideas as well as why access to the entire alphabet is needed, the gateway social media offers, and allowing the necessary time for emergent literacy skills to solidify.
This episode is the second of twelve focusing on literacy instruction for students with significant disabilities.
About the Guest: Rachael M. Langley, MA, CCC-SLP Rachael Langley is a speech-language pathologist working as an Augmentative/Alternative Communication (AAC) Consultant in Michigan. Her 18-year career has focused primarily on supporting students with complex communication needs. A two-time graduate of Michigan State University, Rachael is one of the founders and organizers of the #TalkingAAC Conference, a conference focused specifically on AAC learning. Rachael has presented at local, state, and national conferences. She enjoys creating graphics and other materials related to AAC implementation.
Mentioned: * Comprehensive Literacy for All by Karen Erickson and David Koppenhaver * Talking AAC Conference * Rachael’s Website * Links to sites Rachael recommends:
Project Core
Dynamic Learning Maps Professional Development Models
Literacy for All (Edmonton, Canada)
Relevant Episodes: * Episode 48: Augmentative and Alternative Communication with guest Rachael Langley * Episodes 49&50: Person Centered Planning and AAC with guest Erin Sheldon * Episodes 36 - 46: Safety Series in season 2 * Episode 93: How to Get Assistive Technology into the IEP with guest Lisa Lightner
Find Kim on instagram as @journey2lomah where she often shares in IG stories the application and experimentation of literacy strategies we are learning in these episodes.
The next 12 episodes will focus on what is being discovered regarding literacy instruction for ALL students with disabilities. This first part of this introductory episode explains how to get the most out of the upcoming episodes in this literacy series. The second half of the episode retells the history of Miranda’s literacy instruction and why it has become a priority despite her age.
We recommend purchasing a copy of the book Comprehensive Literacy for All by Karen Erickson and David Koppenhaver as a supplemental resource while listening to this literacy series. We will be referring to it often.
Also recommended is the Talking with Tech Podcast.
Additional resources will accompany each episode so do be sure to take a look at the show notes each week.
Turning 18 is big milestone for all teens. When the teenager requires significant support needs due to disabilities there are additional considerations and things that must be done ahead of time to ensure the person with disabilities is protected and with wanted support services. In this episode we get a to do list and a pep talk to accompany the streamers and balloons.
About the Guest Trudy Marsh Grable is a long-time advocate in the field of disability issues, family support, and services. Trudy conducts person centered thinking programming at Parents Helping Parents, where she has enjoyed a 30-year career. Trudy is also the Executive Director of Journey of Choice, a parent-directed supported living agency, and is the founder of The BFF Project. Trudy is a Credentialed Person Centered Thinking (PCT) Trainer by The Learning Community for Person Centered Practices and utilizes the PCT tools in all aspects of her career and life.
Links to Mentioned Resources * Parents Helping Parents * Parents Helping Parents Facebook Group * State by State SSI Payment Scale * SSA Blue Book list of impairments * HUD
Related Episodes * Legal Rights After 18 - Episode 30 from Season 1 * Special Needs Trusts - Episode 102 from Season 4 * Choosing a Trustee - Episode 103 from Season 4 * Memorandum of Intent - Episode 104 from Season 4 * Life Insurance - Episode 110 from Season 4
We have set a deadline for Miranda to be independent of us, her parents in 5 years, at the age of 22. While she will always require significant care and continual supervision, we have a multi step plan to phase those supports to others while at the same time honoring her life as a young adult. In this episode Tom joins the conversation to share what we will be doing 5 years out, 4 years out, 3 years out, etc to eventually arrive at this big milestone.
Mentioned in this episode: * Guidelight Group * Gilfix & LaPoll
Relevant episodes: * Financial Planning Series: Episodes 101-112 from season 4 * Transition Planning Series: Episodes 86 - 98 from season 3 * Is Technology the Caregiving Solution - Episode 53 from season 2 * Easy Technology Solutions for Individuals with Disabilities - Episode 58 from season 2 * Person Centered Planning - Episode 49 from season 2 * Housing Series: Episodes 11 - 23 from season 1
We are deviating from our typical format of deep diving with expert guests into a topic for a 12 episode series. Rather, we are spending 3 episodes to share 3 things (we hope) that will be happening for Miranda this year. In this episode we discuss our hope that she will return to school.
The last two years have been a mix of public school, homeschool, NPS heartbreak, and Covid. In this episode Kim shares the roller coaster they can't seem to exit. The ride has offered deep disappointments and surprising opportunities.
We pick up the discussion where we left off last year. For the back story refer to episode 99 of The LOMAH Podcast "Advocating FAPE for our Teenage Daughter" as well as episode 111 of The Mama Bear Podcast with Mary Susan McConnell "What's the Plan." Both were published exactly one year ago in January, 2020
2021 Is looking like it might be a big year. In this episode Kim shares three big things on the horizon for Miranda.
Find Kim on Instagram as Journey2Lomah
Kim picked 5 episodes that have had the greatest influence on her approach to disability and future plans.
Listen to this republished episode from season 2 where a new friendship was formed that has continued to present day. While not the topic of this episode, the conversation opened Kim’s eyes to a gaping hole in her circle of friends.
Special Note
The next series will begin late January or early February of 2021. To ensure these episodes find their way to you, tap subscribe on your podcast app and follow @journey2lomah on instagram
This mini series revisits 5 previous published episodes.
The 4th is a republished episode from Season 2 and is without question a unicorn in the line up of over 125 shows.
The LOMAH Podcast has earned a reputation of providing dense information and episodes so packed with resources that many listen to episodes more than once, and often take notes. This republished episode from season 2 is different and yet is Kim’s favorite interview that she has ever done. It was randomly tucked into the technology series (but completely unrelated) thus easy to miss.
Enjoy this unicorn republish of Kim’s favorite interview, ever!
This mini series revisits 5 previous published episodes that have had the greatest influence on Kim's approach to disability and future plans.
The LOMAH Podcast has earned a reputation over 4 seasons, 4 years and 125 episodes of being a resource with high caliber guests providing dense information. Kim learns from the expert guests right alongside listeners.
About this episode:
If you, in any way, have an interest in creating lives of value, choice, and dignity for those with disabilities please listen to this republish of an episode from our advocacy series in season 2. It is one of the most important conversations we have had and focuses on considerations too many in disabilities circles are not even aware of nor taking into account.
Please, listen. Be informed.
This mini series revisits 5 previous published episodes that were game changers for Kim, Miranda, and the family.
The LOMAH Podcast has earned a reputation over 4 seasons, 4 years and 125 episodes of being a resource with high caliber guests providing dense information. Kim learns from the expert guests right alongside listeners.
Kim picked 5 episodes that have had the greatest influence on her approach to disability and future plans.
What Kim learned from the guest in this previously published episode from season 2 hands down made the biggest difference in Miranda’s life and provided techniques for breakthroughs that were years in the making. She directs new listeners who message her to this episode all the time and uses daily what she, herself, learned.
Unfortunately, it was published during the time episodes were kept under 40 minutes and it’s a shame because there was tremendous value in information the guest shared that didn’t make the episode. That information is, however, included on the LOMAH website show notes so do make sure to grab those resources. Click here.
Find examples of Miranda & Kim using what they learned in this episode by following the IG stories @journey2lomah
This mini series revisits 5 previous published episodes that were game changers for Kim.
The LOMAH Podcast has earned a reputation over 4 seasons and 125 episodes of being a resource with high caliber guests providing dense information. Kim learns from the expert guests right alongside listeners.
Kim picked 5 episodes that have had the greatest influence on her approach to disability and future plans. If you follow Kim on instagram at journey2lomah you have seen several times in IG Stories how the topic discussed in this episode from season 2 is now part of Kim and Tom's current 5 year plan to have Miranda successfully living in her own space, at her own address, by the age of 22 despite her significant support needs which will require 24/7 supervision.
The LOMAH Podcast publishes 10 - 12 episodes with expert guests on a single topic creating an in depth topical series. This final episode in the Complicated Behaviors Series provides a quick overview and guest clips from each interview as well as what is coming next.
Episodes in the Complicated Behavior Series Included:
Episode 115 - Moving From What to Why
Episode 116 - Touching of Self and Others
Episode 117 - Vocal and Verbal Stimming
Episode 118 - Motivation and Masking on the Spectrum
Episode 119 - Hyperphagia (Food Obsession)
Episode 120 - Families in Crisis
Episode 121 - Addressing the Disability Advocacy Divide
Episode 122 - Fecal Smearing and Ingesting
Episode 123 - Co-Occurring Conditions and Crisis Intervention
Episode 124 - Medication as a Treatment Tool for Emotional and Behavioral Challenges
Episode 125 - Parenting Support From the Actually Autistic Community
Many diagnosed with autism are eager to come alongside parents to offer support and insight on how our children may be processing the world. In this episode we gain unique perspective from an autistic woman who is also a parent with autistic children. This final episode in our challenging behaviors series finds us coming full circle to the first episode which was about the importance of placing more focus on why a behavior happens over what the behavior is.
Note regarding language - The actually autistic community prefer to be called autistic rather than a person with autism
About the Guest Tiffany Joseph is diagnosed is diagnosed with autism, ADHD, and epilepsy. She is mom to three children, the two oldest are diagnosed with autism and ADHD while the youngest has sensory processing disorder and ADHD. She started the Instagram account nigh.functioning.autism because, as a parent to Disabled kids, she felt like there wasn't enough understanding and empathy for parents' fear of being overwhelmed and systematically disempowered by the system.
On the other hand, she clearly sees that Autistic individuals are consistently talked over and rarely listened to even though they know what help they need and what changes the system needs to make. Tiffany observed that she and her autistic community are often the last to get a say in matters of autism. Tiffany is eager to help parents and providers as she has inside knowledge and experience with being Autistic, Disabled, a parent, and working and being educated in the medical field. She wants parents to be empowered to make the right choices for their kids and loved ones without the guilt and overwhelm that's the norm.
Find Tiffany in Instagram as nigh.functioning.autism
Medicine can be effective in the treatment of emotional and behavioral challenges but finding the right agent and especially the right dose can be tricky and time consuming. This episode covers:
- Determining factors indicating it’s time to consider medication as a treatment tool
- How to tell the medicine working
- Why it takes so long to find the right fit
- The need for markers, tests, or predictors to help choose a pharmaceutical route
- What to expect when starting a medicine
- Comparison of drug classes and options within those classes
- Dosing and the importance of finding the right provider and what to do if the wait list is long
About the Guest Dr. Craig A. Erickson has worked to obtain continuous federal, foundation, internal, and industry funding supporting his and his collaborators' research over the last 10 ten years of his career. He is the inventor or co-inventor on many patents focused on translational treatment development in neurodevelopmental disorders that are held at Cincinnati Children's Hospital Medical Center and at his previous employer the Indiana University School of Medicine. He is considered an international expert in the clinical treatment of fragile X syndrome and has similar expertise in fragile X-specific clinical trial development. Dr. Erickson is additionally an avid teacher of future generations of child psychiatrists has received several teaching awards for his work in physician education. He also enjoys mentoring junior faculty in the behavioral and developmental neuropsychiatry sub-field of child psychiatry.
Specifically in research, he and his colleagues have moved forward several repurposed molecules for study in fragile X syndrome and autism spectrum disorder including work with acamprosate, riluzole, ketamine, D cycloserine, and N acetyl cysteine among other repurposed molecules. He also is working now to move several novel molecules into autism and fragile X-specific study using proprietary compounds abandoned from initially intended use that may hold promise in the disorders which he and his colleagues study.
Clinical Interests: Fragile X syndrome; inpatient neurodevelopmental disorders acute crisis stabilization
Research Interests: Fragile X syndrome; autism spectrum disorders; neurodevelopmental disorders; molecular blood markers; quantitative measurement of pathophysiology in developmental disabilities; translational treatment development; psychiatric services for those with developmental disabilities and severe behavior
Links to Mentioned Content: * Spark Study * Parent’s Medication Guide
This show is part of 12 episodes making up the Complicated Behaviors Series in Season 4.
Recognizing that a new diagnosis or co occurring condition exists in addition to an already existing autism diagnosis can be tricky. Our guest is one of few doctors in the country specializing in identifying and treating cooccurring conditions in autistic patients. She shares insight on identifying and treating cooccruing conditions as well as advice for parents should things escalate to a crisis situation.
About the Guest: Dr. Robin Gabriels, Psy.D. is a licensed clinical psychologist and Professor of Psychiatry at the University of Colorado School of Medicine. Dr. Gabriels has over 30 years’ experience developing intervention programs along with assessing and treating a variety of pediatric and adult populations. Dr. Gabriels established the Neuropsychiatric Special Care program at Children’s Hospital Colorado, one of the few nationally-recognized specialized psychiatric inpatient and day treatment units for children with autism spectrum disorder (ASD) and/or intellectual disabilities. Dr. Gabriels’ research efforts have focused on the ASD population for the past 22 years and for the past 12 years, her research has focused on evaluating the effects of human-animal interactions (HAI) on youth with ASD. Dr. Gabriels conducted the first large-scale NIH-funded randomized controlled trial of Therapeutic Horseback Riding on Children and Adolescents with Autism. In Jan 2020, Dr. Gabriels received a follow-up grant from the Eunice Kennedy Schriver National Institute of Child Health & Human Development of the NIH to evaluate the physiological mechanisms of action relating to the immediate and long-term effects of therapeutic riding in children with ASD and co-existing psychiatric diagnoses.
Dr. Gabriels is a certified trainer for the “gold standard” ASD diagnostic tool, the ADOS (Autism Diagnostic Observation Schedule). She has written articles and book chapters in the fields of autism, asthma, and art therapy, and has lectured and conducted workshops on ASD, both nationally and internationally. She has published two edited books, Autism: From Research to Individualized Practice, (2002) Jessica Kingsley Publishers and Growing Up with Autism:Working with School-Age Children and Adolescents(2007) Guilford Press.
Links to Mentioned Content: * Chapter written by Dr. Gabriels, A Model for Addressing Crisis Behavior in Youth With Autism Spectrum Disorder Within a Functional and Contextual Framework, in The Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions * Assessment considerations upon hospitalization written by Dr. Gabriels and Dr. Siegel, Psychiatric Hospital Treatment of Children with Autism and Serious Behavioral Disturbance * The Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), a research platform of specialized child psychiatry hospital units that serve children and adolescents with autism and developmental disorders. * Iceberg Assessment
This show is part of 12 episodes making up the Complicated Behaviors Series in Season 4
Scatolia and coprophagia, also known as fecal smearing and fecal ingesting are among the least researched areas within the circle of complicated behaviors. Our expert guest shares reasons and solutions for this often unspoken and isolating behavior.
About the Guest:
Kate Reynolds worked for the UK’s NHS for 18 years, seven of which were in HIV/AIDS during the 1990s in and around London. She worked as a senior nurse, trained counsellor and trainer. Both of Kate’s children were on the autism spectrum, one with Asperger syndrome and epilepsy; the other having intellectual disabilities. She has written eleven published books, nine for Jessica Kingsley Publishers including What to Do about Smearing. She is working on a new series of books about sexual health for adults with autism and learning disabilities for Hachette publishers. Kate runs workshops for professionals and parent carers, speaks at national and international conferences, has written numerous articles and is a consultant for schools, other professionals and families. Currently she is engaged in doctoral studies based on her Masters degree.
Link to Mentioned Content: The poo recipe can be found on page 127 of Kate's book.
Related Episodes:
- Episode 116: Touching of Self and Others
- Episode 115: Moving from What to Why
- Episode 77: Your Body Your Boundaries
- Episode 66: Advocating Against the Sexual Assault Epidemic
- Episode 44: Sexual Assault Risk Reduction
- Episode 36: Trauma Indicators
This show is part of a 12 episode series in Season 4 focusing on challenging behaviors.
Disability advocates have made great strides in recent years with headway in inclusion efforts and employment equality. While one segment of the disability community continues the hard work of bringing about needed change and celebrate victories along the way, there is another segment with more significant and debilitating disabilities being agressively silenced. Because policy and research are driven by awarenesses, the silencing of this segment of the disability community has come at the great cost of diminishing programs and supports for those who need them most. Can we come together and honor everyone's reality?
About the Guest: Jill Escher is an autism research philanthropist, president of the National Council on Severe Autism, immediate past president of Autism Society San Francisco Bay Area, a housing provider to adults with developmental disabilities
Related Episodes: * Episode 120: Families in Crisis - Lack of Supports and Nowhere to Go w guest Vance Goforth * Episode 94: Disability Employment - Is It Really Possible for All? with guest Sean Roy of TransCen * Episode 73: Advocacy Series Recap * Episode 72: Finding Your Advocacy Style w guest Michelle Sullivan of Advocate Like a Mother * Episode 71: Political Advocacy - Yes You Can! w guest Laura Hatcher of The Little Lobbyist * Episode 67: HCBS Waiver, Fair Labor Laws & Advocating for Choice w guest Ashley Kim of Together for Choice * Episode 63 & 64: Inclusive Education - Overcoming the Resistance w guest Julie Causton of Inclusive Schooling * Episode 61 & 62: Inclusive Housing & Social Change w guest Micaela Connery of The Kelsey
This episode is one of twelve making up the Complicated Behaviors Series in Season 4.
A family was in crisis. Windows were getting kicked out of moving vehicles. Injuries were mounting on both parent and child. There were dislocated shoulders, eye damage from head butts, and teeth being knocked out from head banging. All experts said treatment was needed ASAP. The problem? There was no where to go.
About the Guest Vance & Kristy Goforth live in East Tennessee with their five children Joshua, Reagan, Emma, Camden and Anna Claire. A graduate of the University of Tennessee at Chattanooga, Vance is employed at a local power utility in the substation and metering department. Vance & Kristy started a advocacy page and support group in 2018 on Facebook; A Voice for Joshua, after facing years of challenges trying to get treatment for their son Joshua’s behavioral disorder. Vance is also a volunteer advocacy ambassador through Autism Speaks for the 3rd congressional district in Tennessee. He also serves on the leadership council for the National Council for Severe Autism.
Links to Mentioned Content * A Voice for Joshua Facebook Page * Family Voices * National Council on Severe Autism * HHS
This show is part of 12 episodes making up the Complicated Behaviors Series in Season 4.
It is with sadness we learned Camp Krem fell victim to the California wildfires this week. For over 60 years Camp Krem celebrated the disability community and it was atop the mountainside camp many came to discover who they were and what they could become.
Today we pause our current series to share and remember what Camp Krem has meant to our family and republish episode 05 where Alex Krem Jr. expresses the ways he has seen campers change and grow. We also learn the legacy behind the 60 plus years of operation now in its third generation.
Bonus: An appearance by Piggie Smalls
We love you Camp Krem!
Hyperphagia is a common characteristic of Prader-Willi Syndrome and is an extreme, unsatisfied, drive to consume food to the point of being life threatening. This episode discusses the best ways to provide food security for those with hyperphagia such as what to put in the IEP, navigating social gatherings, food schedules, and tips for storing food.
About the Guest Jessica Patay is a mother, wife, and advocate/cheerleader for Special Needs Mothers. She has been married to her husband, Chris, for 23 years and they reside in the Palos Verdes area in Southern California. They have two sons and a daughter, all teenagers. Their second son, almost age 17, was born with a rare, medically complex genetic disorder, called Prader-Willi syndrome.
Because Jessica is passionate about serving, mentoring, and inspiring other Special Needs Moms, she launched and leads a non-profit organization called We Are Brave Together. WABT provides resources, respite, support groups, mentoring and inspiration for moms caring for children or adult children, any age, with any diagnosis, disability or challenge. She believes in the power of gathering to empower, strengthen and uplift moms in their unique, diverse and difficult journeys. WABT offers support groups, workshops, retreats and inspirational events. (During this quarantine, WABT is offering weekly Zoom Support Group meetings On Monday nights at 8 pm.) You can find out more at wearebravetogether.com and see their resourceful and inspirational posts on Instagram @wearebravetogether
Jessica Patay has always been a lover of words, ever since 2ndgrade when she declared she wanted to be a famous “arthur.” She has been blogging (infrequently) since 2012 for moms and Special Needs Moms. Her superpower is her honesty in truth-telling from the trenches of Motherhood. She is a three-time alumnus with Expressing Motherhood, a stage show of storytellers and performers all sharing about motherhood.
Mentioned in this Episode * Prader-Willi Foundation California * Prader-Willi Syndrome Association USA * Foundation for Prader-Will Research * We Are Brave Together website, zoom calls/retreats/gatherings, podcast, Facebook Page, Instagram Page
Being autistic can be really hard. Especially when societal norms are working against nuerodiverse acceptance and the common traits associated with autism. This episode looks at how to move beyond the stigma of masking, negativity, obsessions and motivation to use them as advocacy tools for a more neurodiverse culture.
For this episode Kim collected questions from the @journey2lomah instagram community and presented them to Rose Reif, LCMHC, CRC, BC-TMH.
Rose Reif is a Licensed Clinical Mental Health Counselor, a Certified Rehabilitation Counselor, and a Qualified Developmental Disability and Mental Health Professional. She's also Board Certified in providing Telemental Health. Rose supports people with disabilities and the people who love them in her counseling practice in Cary, North Carolina. You can learn more by visiting RoseReif.com
Mentioned in this Episode * Fogg Behavior Model * Transtheoretical Stages of Change Model * Blog Post: Special Needs Parents and Corona Virus Stress * Blog Post: 4 Reasons I Don’t Demand Eye Contact From Autistic Patients
Related Episodes * Episode 90 - Teen to Adult Transition Insights from a Self Advocate * Episode 74 - Caregiver Emotional & Mental Health (w/ Rose Reif) * Episode 70 - Do This Not That: Lessons from a Self Advocate * Episode 61 & 62: Inclusive Housing & Social Change * Episode 54: Virtual Reality Social Cognition Training * Episode 04: The Caregiving, Celebrating Balancing Act
Vocal stimming is among the hardest stimulation to dissect and support, especially when the person is non verbal and unable to communicate the function of the stim. In this episode we look at the behavior through a medical, behavior, and sensory lens with new strategies for each.
About the Guest Moira Peña, BScOT, MOT Reg. (Ont.) is an occupational therapist working at Holland Bloorview Kids Rehabilitation Hospital in Toronto who has dedicated her career to supporting individuals who experience sensory processing challenges. She is an Expert Hub Team member of the ECHO Ontario Autism Program which aims to further develop pediatricians and school psychologists’ skills to screen, diagnose and manage children and youth with ASD in Ontario. She has presented across Canada to parents, teachers, pediatricians, occupational therapists and other allied health care professionals. She holds training credentials from the STAR (Sensory Therapies and Research) Institute Center in Denver, Colorado, USA, and is a Lecturer (Status Appointment) in the Department of Occupational Science and Occupational Therapy at the University of Toronto.
Mentioned in Episode Article on vocal and verbal stimming written by Moira
“Thinking in Pictures” by Temple Grandin
Neglecting to teach sexual boundaries can have devastating consequences. In this episode we discuss the importance of understanding consent and teaching it at a very young age starting with simple displays of affection such as hugs. We learn how to teach public vs private spaces and public vs private behaviors as well as sensory replacements for inappropriate public self touching.
About the Guest: Leah Bauman-Smith is an educator and outreach specialist for Mad Hatter Wellness and Sexuality for All Abilities. She feels strongly that all people deserve equitable sexuality education. Leah is a licensed k-12 special education teacher with a teaching certificate in sexuality education and has taught sexuality education to students in special education for the past 10 years. She believes that all students need to know how to give consent, understand their rights and have opportunities for healthy relationships. Leah is honored to be a part of such an amazing organization that offers services, support and skills to people who are often left out of educational opportunities and experiences.
Mentioned: Sexuality for all Abilities: Teaching and Discussing Sexual Health in Special Education written by Katie Thune, President and Founder of Mad Hatter Wellness
This essential manual helps educators comfortably and knowledgeably bring comprehensive sex education to the special education classroom.
Drawing on firsthand experience and real-world examples, the first half provides background material―including common roadblocks―and tools for how to effectively partner with parents. The second half breaks down the how-tos of implementing a successful sex education program and troubleshoots tricky situations that might come up in the special education classroom.
Written in accessible, person-first language, this guide equips you with best practices for providing students with developmental disabilities with the knowledge and tools to engage in healthy relationships and live full lives as self-advocating sexual beings.
Related Episodes: Episode 77: Your Body, Your Boundaries
Episode 66: Advocating Against the Sexual Assault Epidemic
Episode 44: Sexual Assault Risk Reduction
Self injury, aggression, elopement, scripting, and other behaviors can be complicated to support and move beyond. We hear how one family, with 2 autistic men in their 20’s, learned to shift focus from what the behavior is to why it exists to how to best provide successful support strategies.
About the Guest:
Dr. Tara Regan is the founder and president of the non profit , Autism Grown Up. Autism Grown Up has a website with an extensive library of free downloadable resources and paid downloadable resources that you can start using today as well as a podcast focusing on the transition into adulthood.. Dr. Regan not only has her doctorate in special education but is the sibling to 2 brothers in their 20’s. She is the perfect blend of personal perspective mixed with professional perspective and today she is sharing her observations of challenging behaviors across the first 3 decades of life.
Kim is on Instagram as @journey2lomah
Challenging behaviors are difficult not only in nature but also because there seems to be few avenues of support and suggestions. We hope to change that with this series.
In this episode Kim talks about the pressure she feels to ensure this series is the best one to date and the standards she has set for each episode. She will offer a glimpse into topics that will be covered.
Find Kim on Instagram at @journey2lomah.
The special needs financial planning series included 12 interviews from special needs financial planners and special needs lawyers. This episode offers soundbites from each interview in the series to help you choose which episodes may be of interest.
Episodes in the financial planning series were:
101 - Learning the Lingo
102 - Special Needs Trusts
103 - Choosing and Training the Trustee
104 - Memorandum of Intent
105 - ABLE Accounts
106 - Government Benefits
107 - Finding Resources
108 - Taxes
109 - Multigenerational Planning
110 - Insurance as a Financial Planning Tool
111 - Assets to Consider
112 - Avoiding Common Mishaps
In this episode we cover common mistakes in special needs financial planning and the big question we need to be asking ourselves before making any financial planning move. We go over the difference between a financial planner and financial advisor, discuss what questions to ask when selecting a team, flexible financial planning strategies, and a quick hit list of ideas.
About the Guest Andrew Komarow is a Certified Financial Planner™ (CFP™) and founder of Planning Across the Spectrum. Andrew specializes in helping any self-advocating client or family, with or without autism and intellectual disabilities, achieve financial security. He provides expert guidance for life decisions that are either unknown, not easily accessible, or can be complicated to pilot for someone with special needs. Andrew provides a unique perspective for those with special needs, their caregivers, and their families because he has “walked in their shoes,” having received his autism diagnosis late in life. Andrew is a passionate advocate for autism awareness and has educated himself in everything possible to help the underserved autism community. In addition to his CFP™ designation, Andrew holds a master’s degree in financial services, and is a certified Behavioral Financial Advisor (BFA™), Chartered Special Needs Consultant (ChSNC®), and Associated Estate Planner (AEP®). Andrew sits on the boards for Autism Services & Resources Connecticut, the American College Alumni, and the FOCUS Center for Autism. He is a Connecticut house of representatives Autism Spectrum Disorders Advisory Council appointee and frequently speaks on his own experiences or on various financial and insurance planning topics. Andrew can be reached at andrew@planningacrossthespectrum.com.
This show is the 12th of 12 episodes in a series focusing on Special Needs Financial Planning.
Our guest shares assets to consider when financial planning for a loved one with disabilities. We learn what assets work best in short planning versus long term planning, how to ask for “free money” from our employer, taxation of investments, and some new rulings that could have significant impacts on Special Needs Trusts drafted prior to December of 2019.
Disclosure: This general communication is provided for information purposes only. It is educational in nature and not designed to be a recommendation for any specific product, strategy, plan feature or other purposes.
About the Guest: Darryl Ng is a First Vice President, Portfolio Management Director and Financial Advisor of the Mountain View Group at Morgan Stanley. As a Senior Member at the Mountain View Group, Darryl heads the advanced planning activities for the team. He specializes in the creation and implementation of financial plans, portfolio management, philanthropy, insurance and estate planning for his clients throughout the United States and overseas locations. Throughout his career, Darryl has always been committed to advanced learning and continuous education. He has received a number of important industry designations including the CERTIFIED FINANCIAL PLANNER ™, CHARTERED FINANCIAL CONSULTANT ™, and CERTIFICATION IN LONG TERM CARE ™. As a CHARTERED SPECIAL NEEDS CONSULTANT®, Darryl is one of the few advanced credentialed professionals specializing in the unique considerations in planning for special needs families and caring for loved ones with disabilities. Darryl and The Mountain View Group has been recognized as leader in the financial services arena for many years through numerous local and national publications. Darryl has been featured in 2019 Forbes Magazine “Top Best In State Next Gen Wealth Advisor- California” and 2018 Forbes Magazine “America’s Top Next Gen Wealth Advisors”. In 2015-2018, Barron’s included the Group on its list of the ”Top 120 Financial Advisors in California” and “Top 1,200 Financial Advisors Nationwide”; 2016 On Wall Street Magazine “Top 40 Under 40”; 2016-2018 Financial Times “Top 400 Financial Advisors Nationwide”, and 2018-2019 Forbes Magazine “Best In State Financial Wealth Advisors Northern California”.
Related Episodes: * Episode 102: Special Needs Trusts with guest Kevin Urbatsch, Director of the Academy of Special Needs Planners * Episode 105: ABLE Accounts with Miranda Kennedy, Director of the Able National Resource Center * Episode 106: Taxes with guest Michael C. Walther II CPA/PFS, CFP®, CFA® * Episode 107: Government Benefits with guest Marlene Ulisky, Manager of Disability Benefits at the National Disability Institute. * Episode 108: Disability Financial Resources with guest Penny Canada, CFP and a special needs mom.
This episode is the 11th of a 12 part series focusing on special needs financial planning
Services and supports for adults with disabilities can be expensive so it makes sense to get creative. Using insurance policies as a financial planning tool is an example of the creative use of resources. Our guest gives us the lowdown on the various types of insurance available and how they can be leveraged to maximize assets, especially when a family member has special needs.
About the Guest: Anthony Trias, CFP, RICP
As a CERTIFIED FINANCIAL PLANNER™ professional, Anthony Trias uses his passion for helping others along with financial expertise to provide a personalized approach toward life planning. He has over 10 years in the industry, engaging clients in all levels of financial knowledge, empowering them to make smart, educated decisions. Anthony focuses on retirement planning, investment management, tax and insurance strategies for mid-to-high net worth families and business owners. He is a San Francisco Bay Area native, residing in Marin County. In his free time, he enjoys local adventures with his wife and two young kids. Anthony’s personal hobbies include keeping up with fitness goals, watching UFC and driving in muscle or exotic cars.
Disclosure:
This general communication is provided for information purposes only. It is educational in nature and not designed to be a recommendation for any specific product, strategy, plan feature or other purposes.
This show is the 10th of 12 episodes in a series focusing on Special Needs Financial Planning from Season 4 *Find Kim on Instagram as Journey2Lomah
Assets often are passed from one generation to the next so coordination of financial planning is necessary, especially when a family member with disabilities is in the mix. This episode teaches us how to sync plans across multiple generations to maximize assets as well as what to focus on for each generation.
About the Guest:
Mark Gilfix is an attorney at Gilfix and La Poll associates, an award winning writer, and an up and coming leader in the field of Estate Planning, Elder Law, and Special Needs Planning.
Related Episodes:
This episode is the 9th in a series focusing on Special Needs Financial Planning. The series includes episodes 101 - 113.
Find Kim on Instagram as @Journey2lomah
The estimated lifelong cost of living with a disability is $3 - $4 million dollars. This episode uncovers 35 financial and caregiver support considerations.
Show notes, including the list of 35 considerations can be found at https://www.lomah.org/podcastseason4/108
About the Guest:
Penny is a certified financial planner specializing in helping families with special needs children prepare and plan for the future. Penny’s middle son, born with muscular dystrophy, has been instrumental in illuminating what’s important to her: faith, time with family and friends, good medical care, living a life of one’s choosing, hope, and the ability to fund current and future needs while enjoying life today. Special Needs Planning, involving life planning, resource planning, legal planning and traditional and creative financial planning (such as blending and leveraging of funding sources and effective advocacy) is a specialty practice area for Penny.
SSI and SSDI are widely used government benefits. Our guest has 35+ years with the Social Security Administration and shares tips and tricks of the application process and what to do should the application be denied.
About the Guest:
Marlene Ulisky is a Disability Benefits Expert with the ABLE National Resource Center and a Manager of Financial Empowerment and Disability Benefits at the National Disability Institute.
She retired from the Social Security Administration after a 35+ year career. She was one of 58 Area Work Incentives Coordinators from across the country who developed expertise in SSA employment support programs. After her retirement from SSA she was certified as a Community Partner Work Incentives Counselor through Virginia Commonwealth University, worked for the Florida Office of Vocational Rehabilitation as a Consultant to establish the Partnership Plus Program under the Ticket to Work legislation and was later contracted by SSA to assist them with managing critical integrity workloads. She continues to work as a disability consultant for the State of Florida and for private individuals. She is the proud Aunt of an individual with an intellectual disability and she has helped him to achieve his goals.
***This episode is the 7th of 12 focusing on Special Needs Financial Planning
***Find Kim on Instagram @journey2lomah
With proper documentation, many expenses qualify as medical deductions. Likewise, Special Needs Trusts and ABLE accounts have unique taxation rules. This episode is two in one with the first half covering how to get documentation necessary to cover medical deductions not commonly considered. The second half of the show discusses the taxation of Special Needs Trusts and ABLE accounts as well as the taxation of SSI and SSDI payments.
Show Notes with links to mentioned content at https://www.lomah.org/podcastseason4/105
About the Guest: Michael C. Walther II CPA/PFS, CFP®, CFA® Mike is the founder of Oak Wealth Advisors with a personal mission to “to assist families in their efforts to provide loved ones with special needs with the financial resources and other supports necessary to live their lives to their fullest potential.” He is a frequent presenter at national conferences for professional organizations and non profit as well as a lecturer for universities. Mike is involved in many charities and can be found in print at Business Week, Investment News, The Wall Street Journal, The New York Times, The Washington Post, and others. He has appeared on CNBC, and ABC News. Mike was the first Illinois financial planner admitted into the Academy of Special Needs Planners.
*Find Kim on Instagram @journey2lomah
*Find us on Facebook as LOMAH
ABLE accounts are fairly new on the scene and are unique in their tax benefits, ease of set up, and the financial freedom they offer individuals with disabilities.
Our guest addresses ABLE account myths, informs us what homework needs to be done prior to opening an ABLE account, how ABLE accounts can and can not be used, and how they offer freedom unlike any other financial planning tool.
About the Guest:
Miranda Kennedy is the Director of the ABLE National Resource Center. Miranda’s expertise is in the areas of outreach and education, researching and analyzing policy issues, developing and executing training and implementing promising practices in the areas of youth in transition, workforce development, cross-system service coordination and asset development. From 2006 to 2018 Miranda served as the Director of Training and Senior Technical Advisor for the Disability Employment Initiative and Disability Program Navigator Initiative, contracted by the U.S. Department of Labor, increasing the capacity of the public workforce system to better serve and achieve integrated, competitive employment outcomes for job seekers with disabilities.
Miranda holds a master’s degree in Public Policy from the University of Denver Institute for Public Policy Studies and a Bachelor of Arts in English Literature from the University of Colorado at Boulder. She lives outside of Boulder, Colorado with her two children.
Links to content mentioned can be found at https://www.lomah.org/podcastseason4/105
Find Kim on Instagram @journey2lomah
This episode is the 5th in a series of 12 focusing on Special Needs Financial Planning
Drafting a Special Needs Trust is only the foundation of sound planning. On that foundation are additional documents and steps to take. In this episode we discuss two.
First, the memorandum of intent which gives direction on wishes and day to day care. This episode covers what to put in the memo of intent, ensuring it is easy to find, being bold yet discreet in wishes that others may not like, and why you should not store it in your safe at home.
The second consideration discussed is the importance of funding the trust via retitling to avoid probate.
Show notes for this episode are at https://www.lomah.org/podcastseason4/104
Find Kim on instagram as journey2lomah
About the Guest
Michele P. (Fuller) Urbatsch is the founder of Michigan Law Center, P.L.L.C, and President of Advocacy, Inc., a non-profit organization. Her law practice focuses on advocacy, protection, and asset preservation for persons with disabilities, including working in the following areas of law: elder law, special needs planning, special needs trust administration, and settlement planning.
Michele was recently appointed Special Assistant Attorney General to assist in settlement planning for the Flint Water cases. She is the former Chair of the Elder Law and Disability Rights Section (ELDRS) of the State Bar of Michigan and has leadership positions in several national organizations: Advisory Board Member of the Academy of Special Needs Planners (ASNP) and Michigan Chapter of NAELA Board of Directors. She is also active in the National Academy of Elder Law Attorneys (NAELA), the Michigan Association for Justice, and a regular contributor for the Institute for Continuing Legal Education (ICLE).
Michele is honored to have received the 2018 State Bar of Michigan Unsung Hero Award, given annually to an attorney demonstrating dedication in their practice for the betterment of others. She has also been nominated to the Super Lawyers list for the last several years. Other awards she has received include: American Institute of Legal Counsel 10 Best Elder Law Attorneys 2016-2019, and Distinguished Lawyers 2016-2019 by The Expert Network, given to the top 3% of attorneys in the nation. She was also named the Women-in-Law Elder Law and Special Needs Planning Attorney of the Year by Lawyer’s Monthly Magazine in 2016. Parenting Magazine also named Michele the Top Special Needs Child Advocate in 2013.
Michele and her award-winning special needs attorney and spouse, Kevin Urbatsch, frequently write together. Their publications include: Administering the Michigan Special Needs Trust; the 2nd and 3rd editions of Administering the California Special Needs Trust;and Special Needs Trusts: Protect Your Child’s Financial Future, 6th and 7th Editions, NOLO Press. She is also the author of Saving Grace, an elder law client’s experience, and Finding Peace: a guide for caregivers, to be published in 2020.
Michele and Kevin have also co-authored several nationally published articles, including Traps for the Unwary During Special Needs Trust Administration, in Estates and Trusts Magazine, the Future of Planning for Persons with Disabilities which was published in the Fall 2013 edition of the NAELA Journal, and Pooled Trusts: An Approach to Special Needs Planning for Families of Modest Means, published in the May-June 2013 edition of BiFocal, a Journal of the ABA Commission on Law and Aging. Michele has also contributed to Michigan Bar Journal, Planning for a Person with Disabilities, Considerations when Settling a Lawsuit for an Individual Lacking Capacity or a Minor, and Divorce and Disability: Identifying and Resolving the Unique Issues of a Spouse with Disabilities. In addition to the Michigan State Bar Journal, Michele has contributed to the MAJ Journal, Elder Law Answers, NAELA news, and other publications.
Michele is a frequent presenter for various national and statewide organizations such as ElderCounsel, MassMutual, the American Bar Association, American Association for Justice, Michigan Association for Justice, the Institute of Continuing Legal Education, Michigan Brain Injury Association of Michigan and the Michigan Guardianship Association, among others. She is of council for several non-profit organizations, national and statewide, which administers pooled special needs trusts.
Michele graduated with Honors as a member of the James Madison College at Michigan State University with a Bachelor of Arts in International Relations. Michele then attended American University International Law Masters program and obtained her Juris Doctor from the University of Detroit Mercy School of Law.
The Trustee of a Special Needs Trust has an incredible amount power over the distribution of funds for the individual with disabilities. Not only must they act in the best interests of the beneficiary with special needs but the trustee’s job must be done flawlessly because mistakes could result in the loss of benefits for the person with disabilities.
In this episode we learn how to choose and train the appointed trustee. The show covers 4 qualities a trustee must have, why we should rethink the role of siblings, potential models that can be utilized, and a reason why a special needs trust may not be the best option for some adults with disabilities.
About the Guest: Stephen W. Dale received his JD from Armstrong Law School and his LL.M. in Taxation from Golden Gate University in 2001. The Dale Law Firm was established in 1992 in order to provide quality estate planning to clients by working cooperatively with the clients’ tax, financial and insurance professionals.
Mr. Dale is disability rights advocate whose interest in the disability community began at an early age. He comes from a family of institutional workers that served in California’s State Hospitals and Developmental Centers for over 3 generations. Stephen worked for 17 years as a psychiatric technician in a variety of institutions in California, and later became an intern at the Disability Rights Education and Defense Fund (DREDF) working on disability access cases before starting his own practice focused on drafting and administering special needs trusts.
He serves on the boards of the Arc of California and the Contra Costa County Developmental Disabilities Counsel. He spends much of his time attending disability rights activities, including legislative hearings and serving on boards and committees of disability-rights organizations.
He is also the trustee of the Golden State Pooled Trust which serves beneficiaries in California. Part of his duties is to oversee a series of MCLE programs accredited by the California State Bar, which provides education to attorneys and trustees on a wide variety of disability related subjects focused on quality of life for persons with disabilities.
He is the recipient of the 2010 Theresa Foundation Award and the 2007 NAELA Powley Award. Additionally, Mr. Dale is a long-standing member of the Special Needs Alliance, a national, not for profit organization of attorneys dedicated to the practice of disability and public benefits law.
Related or Mentioned Episodes:
- Safety Series - Episodes 36 - 47
- Legal Rights After the Age of 18 - Episode 30
- Financial Planning Series - Episodes 101 - 113
Find Kim on Instagram as Journey2Lomah
Follow LOMAH on Facebook as LOMAH
Special needs trusts are one of the first things mentioned when beginning to plan financially for a family member with special needs. In this episode we learn why special needs trusts are such powerful tools and the difference between 1st, 3rd, and pooled trusts. We also learn a management strategy that works well for most families, what to look for when choosing a pooled trust, as well as suggested next steps after the completion of creating the trust.
About the Guest:
Kevin Urbatsch is a principal of the special needs and settlement planning law firm, The Urbatsch Law Firm P.C. located in Pleasant Hill, California. Kevin also serves as National Director of the Academy of Special Needs Planners (ASNP), a national organization of special needs and settlement planning professionals. Kevin is a Certified Specialist in Estate Planning, Trust, and Probate Law by the California State Bar Board of Legal Specialization. Kevin is also a fellow of the American College of Trust and Estate Counsel (ACTEC).
In 2013, Parenting Magazine named Kevin as one of the nation’s Top Child Advocates for his work in fighting for the rights of children with special needs. In May 2011, Kevin was presented the NAELA’s Presidential Recognition Award for his work in special needs planning. In each year from 2010 to 2017, Kevin was named a Northern California Superlawyer. In 2009, Kevin was named KRON-TV’s Best of the Bay estate-planning attorney for Northern California.
Kevin is a frequent lecturer to professionals and consumers on special needs and estate planning. He also is the author (or co-author) of several books and treatises.
Kevin has been a member of the California Bar since 1993. He received his law degree from St. Louis University in 1993 and his undergraduate degree from Truman State University in 1988. He began his California law practice as a litigator where he specialized in a variety of matters, including but not limited to elder financial abuse, Americans with Disabilities Act public access cases, and trust and estate litigation.
This show is the 2nd of 12 episodes in a series focusing on Special Needs Financial Planning Find Kim on Instagram as Journey2Lomah
Find LOMAH on Facebook as LOMAH
Special needs financial planning is one of the most important and impactful things we can do in preparing and controlling the future. There are many terms and a lot of intimidating lingo. In this episode we have some fun with the terms and learning them so as to set the foundation for what is to come in the next 12 episodes of the financial planning series.
About the Guest:
Mark Gilfix is an attorney at Gilfix & LaPoll in Palo Alto, California. He is an award winning writer, and an up and coming leader in the fields of Estate Planning, Elder Law, and Special Needs Planning.
He is an increasingly sought-after speaker in the field. He has appeared on television on KTVU Fox 2 and NBC Bay Area and has given multiple client and community seminars in the area of multi-generational and special needs estate planning, he has spoken about planning for younger families with the National Association of Elder Law Attorneys, and he has presented about these topics at the Morgan Center Annual Conference.
He has lead multiple national webinars, both for attorneys and for the general public. He has lead talks about multigenerational special needs planning for the Academy of Special Needs Planners, for the Autism Society, and other leading organizations. Keep up with his presentations by following his Facebook page.
Related Episodes:
- Episode 30: Legal Rights After the Age of 18 for Students with Special Needs
- Episode 100: How and Why We Have Changed
This show is the 1st of 12 episodes in a series focusing on Special Needs Financial Planning Find Kim on Instagram as Journey2Lomah
Kim’s husband, Tom, joins the show for episode 100! The duo discuss respecting the privacy of their family while still on such a public space, the marital roles they have found themselves, and Tom connecting with other dads.
The last half of the show is podcast discussion such as some embarrassing things that have happened with the guests, how things are so much different than they were 100 episodes ago in regards to steps they are taking toward planning the future for their daughter with type 3 autism and which episodes brought changes.
They reveal of the 5 most downloaded shows and the surprising general thread. Hint…3 of the 5 came from the same series. Can you guess which?
The episode will concede with a bonus section of guest updates that is super encouraging and fun to hear.
Find Kim on Instagram as journey2lomah
Find LOMAH on Facebook as LOMAH
We are pausing the normal flow of expert guest interviews to share a bit a personal story about our daughter’s educational journey and current status of establishing FAPE. I’m sharing how we arrived at the realization we needed to make changes and how we might be making the job hard for our lawyer.
The Transition Plan goes into the IEP at the age of 14 or 16. At this time, all IEP goals should point directly to these long term post secondary goals.
Despite the tremendous importance of the Transition Plan, it is often overlooked or approached as a last minute legally required add on.
After a few announcements regarding what is next for the LOMAH Podcast, this episode gives an overview of the 13 episode Transition Planning series. Guests in the series educated us on aspects of the transition plan and tips for how to get our school district on board in creating better post secondary goals as well as providing necessary supports to reach those goals. You will hear an overview of each episode as well as a 60 second clip so you can circle back to those of interest and need.
Episodes in the series are listed below. Click to be directed to valuable resources in the show notes for each episode.
#86 - Transition Planning Series Introduction
#87 - IEP Transition Planning: Is It Working? With guest Dr. Mary Susan McConnell of The Mama Bear Podcast
#88. - Using Assessments to Guide IEP Transition Goals with guest Dr. Mary Morningstar of the Transition Coalition
#89 - Self Determination Strategies for Complex Communication Users with guest Erin Sheldon of Integrated Action for Inclusion
#90 - Teen to Adult Transition Insights from a Self Advocate with guest Melissa Crisp Cooper
#91 - Diploma, Vocational, and Certificate Tracks for Students with Disabilities with guest Ashley Grant of Advocates for Children of New York
#92 - Preparing Students for Specialized College Programs with guest Courtney Dukes of Clemson Life
#93 - How to Get Assistive Technology into the IEP with guest Lisa Lightener of a Day in Our Shoes
#94 - Disability Employment: Is it Really Possible for All with Guest Sean Roy of Transcen
#95 - School to Adult Services: Filling the Gaps with guest Sonni Charness of Guidelight Group
#96 - Interagency Collaboration in IEP Transition Planning with guest Dr. Kelli Crane of the Center for Transition and Career Innovation
#97 - Parent Roles in IEP Transition Planning with guest Dr. Dawn Rowe of East Tennessee State University
*Find Kim on instagram as journey2lomah
Parents often take a significant role in planning the future for their child with disabilities. It is not feasible to take on every role and task so how can parents identify and prioritize their roles in transition planning? What are the most important aspects in which to devote energy and attention?
About the Guest Dawn A. Rowe, PhD, is an Associate Professor in the department of Educational Foundations and Special Education at East Tennessee State University. Her research and scholarship are focused on three main areas of research: evidence-based practices and predictors of postschool success for students with disabilities, life skills interventions (e.g., goal setting, self-management, communication skills), and professional development (e.g., families, in-service and pre-service educators). She has over 20 years’ experience working in the adult service system and as a teacher and transition specialist for youth with disabilities in the public-school system. Dr. Rowe serves as the academic editor for the Council for Exceptional Children’s Research to Practice Journal, TEACHING Exceptional Children. Dr. Rowe’s publications have focused on transition assessment, transition skill instruction for low incidence disabilities, and family engagement.
Links to mentioned content can be found in the show notes at https://www.lomah.org/podcastseason3/97
Kim can be found on instagram as journey2lomah
This show is part of a 13 episode series focusing on the transition plan that goes into the IEP at the age of 14 or 16.
School services end when adult services begin, but there is opportunity for overlap during the teen years to increase chances of a smooth transition via interagency collaboration. How can this opportunity be maximized?
About the Guest: Kelli Crane, Ph.D. is an Assistant Research Professor at the Center for Transition and Career Innovation, University of Maryland, College Park. She bring extensive experience serving in significant leadership roles on research and model demonstration projects funded by the U.S. Department of Education’s Office of Special Education and Rehabilitative Services, the Social Security Administration and the National Institute on Disability, Independent Living, and Rehabilitation Research. Dr. Crane’s research interests include examining programs and practices to improve post-school outcomes for transition age youth with disabilities. Currently, she is co-principal investigator for Maryland PROMISE and co-director on Way2Work Maryland. Both projects, funded by the U.S. Department of Education, are randomized control research trials examining interventions to improve the education and employment outcomes of transition-aged youth with disabilities. She has direct experience working as a transition specialist in an urban school district, a vocational rehabilitation counselor, and job coach.
*This episode is part of a 12 episode series focusing on the Transition Plan in the IEP* Follow Kim's journey with her daughter on Instagram at journey2lomah
When students age out of school services and transition to adult services gaps often emerge. Many of these gaps have simple solutions. What are the gaps and how do we bridge them?
About the Guest: Sonni Charness is the founder of Guidelight Group. She and her team specialize in helping California teens and adults with developmental disabilities and their families plan for and live their their best lives. Sonni has over ten years of professional experience supporting teens and adults with disabilities in their communities, and a Master’s degree in Special Education with an emphasis in transition and employment outcomes for youth with moderate to severe disabilities. Her 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 also serves on the Board of Directors for the California chapter of APSE, a national organization whose mission is to promote access for all people with disabilities to have competitive employment in an inclusive workforce.) You can learn more about Sonni, her team and their work at GuidelightGroup.org.
*Follow our journey on instagram @journey2lomah***
Links Mentioned: * Google Person Centered Thinking Training to search for opportunities in your area * Helen Sanderson Associates - Person Centered Planning Tools * The Learning Community for Person Centered Practices * Google Micheal Smull
Related Episodes: * #94 - Disability Employment: Is it Really Possible for All? * #92 - Preparing Students with Disabilities for Specialized College Programs * Transition Planning Series Episodes 86 - 98
For individuals with differing abilities to have paid employment in community settings, there needs to be a culture that believes they are capable. What hurdles must be overcome to shift perspective?
Our guest discusses 4 key hurdles keeping parents and IEP teams from believing in the possibility of paid employment in a community setting. We acknowledge these hurdles and learn how to clear them. We also learn what to put in the employment section of the transition plan in the IEP to help students move towards paid employment in a community setting.
About the Guest Sean Roy is a Research Associate with TransCen Inc. In this position he works to provide training and technical assistance to states, employment professionals and schools, leading to improved success for individuals with disabilities who are transitioning from school into the workforce and life in the community. Roy is an experienced curriculum developer, writer, trainer and presenter, often being asked to speak to professionals and families about issues of employment, accessing postsecondary education, and promoting family involvement in employment and transition planning. Mr. Roy draws from previous experience as Co-Director of PACER’s National Parent Center on Transition and Employment, as well as being a sibling of an adult with autism.
Links to content mentioned in this episode can be found at www.lomah.org/podcastseason3/94
Follow LOMAH on Instagram at journey2lomah
Related Episodes * Technology Series - Episodes #48 - #59 * Self Determination for Complex Communication Users - Episode #89 * Transition Planning Series Episodes #86 - #98
Assistive technology is an essential lifeline for many students with differing abilities. How do we get it in the IEP and what additional considerations are important? What happens to technology supports after the student ages out of the school system and enters adult services?
This episodes covers: * What does federal IDEA says about assistive technology and how you can use the law in your advocacy efforts to get needed technology into the IEP * How to stay current on new assistive technology trends * Verbiage to use in your request to the school district for an assistive technology evaluation * Additional IEP considerations with assistive technology such as who is responsible for damaged euipment, ensuring proper implementation and training of staff, etc. * What happens to technology devices belonging to the school systems after the student ages out and enters adult programs * Who pays for assistive technology for adults
About the Guest: Lisa Lightner is a sought after and trusted resource for parents navigating the IEP process. She hosts the only IEP focused podcast, called Don’t IEP Alone, and her website, A Day in Our Shoes, receives hundreds of thousands of visits per month. She is a professional special education advocate, a former adult vocational program instructor, and a credentialed lobbyist. She serves on the board of several organizations and has been featured in dozens of mainstream parenting shows and magazines.
Related Episodes: Technology Series: Episodes #48 - #59 in Season 2
Transition Series: Episodes #86 - #98
Clemson University supports one of the first post secondary programs for students with disabilities in the country. There currently are over 200 similar programs across the country and in this episode we use Clemson Life as a framework to give families and IEP teams a vision of a post secondary college program so they can begin considering necessary requirements to qualify for programs such as Clemson Life and thus begin working toward goals in the middle school and high school years.
There are 3 parts to today’s conversation. First we learn about the Clemson Life program. Second we will learn what goals should be going into the 3 federally mandated sections of the IEP Transition Plan to set students up for success in post secondary college programs. We will conclude the conversation looking at the four belief statements of the Clemson Life program and how they are applicable regardless if college is an option for our student.
About The Guest: Courtney Dukes became involved with the Clemson Life program as a Clemson student. She is a certified K-12 special education teacher and is in her 5th year as an employee with the Clemson Life program serving as the freshman teacher.
Follow Clemson Life on Instagram, Facebook, and Twitter
You can find behind the scenes of Kim's journey with her daughter on Instagram as journey2lomah. LOMAH is also on Facebook.
Most students in special education are tracked to age out of the school system without a degree or direct pathway to employment. What if we believe expectations can be higher for our student? What are the options for exiting the school system and where does each option lead? Who is making these choices?
About the Guest Our guest, Ashley Grant is a Supervising Staff Attorney at Advocates for Children of New York, focusing on protecting the rights of middle school and high school students, including students with disabilities, students who are overage and under-credits, and students transitioning out of school. She also coordinates the state-wide Multiple Pathways to a Diploma Coalition and teaches the Special Education Law and Advocacy Field Clinic at Cardozo Law School. Ashley started her career as a special education teacher in Los Angeles. She holds a B.A. in Sociology from the University of California, Los Angeles; a M.A. in Special Education from California State University; and a J.D. from New York University School of Law.
Related Episodes: Episodes 86 - 97: Transition Planning Series
For behind the scenes of Kim's journey planning the future for and with her daughter follow them on Instagram at journey2lomah
We hear a lot and think a lot about the inevitable time of transitioning out of special education school services and into adult services. It has been coined “when the bus stops coming” or “falling off the cliff.’ What does this time of life feel like from the perspective of the person actually going through it? From the perspective of the individual with disabilities?
Self Advocate Melissa Crisp-Cooper shares her journey, gives parents a pep talk, and expresses where challenges still exist in her life 20 years later.
Links to content mentioned on the show can be found at https://www.lomah.org/podcastseason3/90
About the Guest: Melissa Crisp-Cooper is a writer, adventure seeker, and health advocate. She has cerebral palsy, and navigates the world using a purple power wheelchair. Melissa and her husband Owen live in Oakland, CA with two opinionated black cats. Together, Melissa and Owen love to travel, eat good food, and stretch out in their adaptive yoga class.
Related Episodes: Episodes #86-#97 make up the Transition Planning series which focus on creating the post secondary transition plan that goes in the IEP at the age of 14 or 16.
Episode #70: Do This Not That: Lessons from a Self Advocate with Angela West
Episode 25: Think College with Kate Weir
Follow Kim on instagram @journey2lomah for an in depth and behind the scenes look at their journey
Individuals with disabilities have the right to make choices for themselves and for those choices to be honored, but what if it is hard for us to understand what those choices, likes, and dislikes are because of complex communication needs? How do we begin teaching and honoring self determination at a young age?
This episodes explores 3 strategies:
- Verbal Referencing
- Separating what is important to the individual from what is important for the individual
- Reframing likes into social rolls
Links to items mentioned in the show are at https://www.lomah.org/podcastseason3/89
About the Guest:
Erin Sheldon is mom to Maggie, a 16 year old with severe disabilities. Erin earned her master's degree studying how to support our students with complex needs in the regular classroom. She is CEO of Ontario's parent association for school inclusion (www.inclusionontario.ca). She also works for the assistive technology company, AssistiveWare. Erin has authored articles, book chapters, manuals, online professional learning modules, and more.
Related Episodes:
Transition Series - Episodes 86 - 97
Episode 77 : Your Body Your Boundaries
Episode 50: Keeping AAC Person Centered
Episode 49: Self Determination with Complex Communication Needs
Episode 48: Augmentative and Alternative Communication
*Follow Kim on instagram @journey2lomah for an in depth and behind the scenes look at their journey*
When we start considering the future for individuals with differing abilities, the assessment process is an important yet often omitted first step. Ongoing formal and informal assessments, specifically those identifying strengths and interests, should be the drivers of transition IEP goals. How can we encourage school districts to assess and what are the whens, hows, and whos of the process?
Dr. Mary E. Morningstar is faculty in Special Education at Portland State University and Co-Director of the Career and Community Studies program, a fully inclusive transition to postsecondary education for youth with intellectual disability. She directs the Transition Coalition, a national center offering online, hybrid and in-person professional development and resources for secondary special educators and transition practitioners.
Dr. Morningstar teaches us what transition assessment is, when and how is it happening, and who should be performing the assessments.
She gives us counsel on how to prompt the district to initiate a wide range of assessments and tells us exactly what to say in the email we send requesting assessments.
We will be learning 3 things to bring the IEP team that would be seen as supportive and helpful rather than demanding so we are operating as a team.
We are going to learn about observational and situational assessments and why we want to use those and NOT anecdotal observations.
Links to valuable resources mentioned in this episode can be found at https://www.lomah.org/podcastseason3/88
To follow Kim's journey with her daughter, find her on instagram as journey2lomah
Transition planning begins during the teen years and becomes part of the IEP between the ages of 14 - 16. Does the process work? Are we focusing on the right areas?
Mary Susan McConnell, Ed.D, shares results and implications of her research which aimed to answer 3 key questions:
1) Actual Post Secondary IDEA Outcomes
2) Identifying the Most Significant Challenges Upon Leaving the System
3) Parental Input on the Effectiveness of Transition Teams and Suggestions for Improvement
Find Mary Susan on her website, Facebook, and Instagram as Mary Susan McConnell. Find Mary Susan's podcast by searching Mama Bear Podcast. It is the show with the Grizzly Bear.
Find Kim on Instagram as Journey2Lomah
Related LOMAH Podcast Episodes: Episodes 86 - 97: Transition Planning Series
Episode 69: Self Determination with Complex Communication Needs
Episode 49: Person Centered Planning
Episode 31: Transition Planning to Guide IEP Goals
Episode 30: Legal Rights After 18
Episode 25: Think College
Episodes 22 & 23: Housing - 4 Things to Start Doing Now with the Autism Housing Network
Episode 21: The Family Home & ADU Housing Model
Episode 18: Housing: 5 Takeaways
Transition planning sets the stage to get students where they want to be upon aging out of the school system. Depending on the state, transition planning becomes a part of the IEP by the age of 14 or 16. Some school districts take the transition planning process and knock it out of the ballpark. Some school districts barely meet minimum requirements. Regardless of your situation, the more you know, the better you can prepare and advocate for a successful transition into adulthood.
The transition series will include episodes on what the research shows regarding transition, utilizing assessments to drive goals, preparing for special needs college programs, putting technology in the IEP as transition supports, self determination, and the roles of parents.
Follow Kim on Instagram at journey2lomah for behind the scenes of the creation of her daughter's transition plan.
Related Episodes
Episode 69: Self Determination with Complex Communication Needs
Episode 53: Is Technology the Caregiving Solution
Episode 49: Person Centered Planning
Episode 32: High School Time Crunch
Episode 31: Transition Planning to Guide IEP Goals
Episode 30: Legal Rights After 18
Episode 29: College of Adaptive Arts
Episode 28: College and High School - A Student’s Perspective
Episode 26&27: Transition Programs at UC
Episode 25: Think College
The health series included 3 episodes focusing on caregivers and 9 episodes focusing on individuals with special needs. What did you miss? What’s coming next?
*Journey with LOMAH over on instagram @journey2lomah
Episodes in the Health Series:
#74 - Caregiver Emotional & Mental Health
#75 - Obesity in the Disability Community
#76 - Caregiver Physical Health
#77 - Your Body Your Boundaries
#78 - Dignity and Hygiene
#79 - Better Medical Visits for Patients with Special Needs
#80 - Winning Insurance Battles
#81 - When Your Faith Feels Fragile
#82 - Better Dental Exams for Patients with Special Needs
#83 - The Thoughtful Use of Medical Cannabis
#84 - Menstrual Manipulation and The Pelvic Exam
Many women and teens use hormones to manipulate their menstrual cycle and so it makes sense this can also be an option for women with disabilities. What ethical considerations come into play and what options are available? What about the pelvic exam? Is it a recommended procedure for this population? How can it be performed with the utmost dignity for patients with differing abilities?
The first part of the show will cover reasons for menstrual manipulation and the ethics of making that choice. The last half covers options for menstrual manipulation including considerations that may be specific for those with differing abilities. Also discussed is how to support an individual with disabilities through the pelvic exam.
To navigate this territory with us is Dr. Michael Policar. Dr. Pollicar is a Professor Emeritus of Obstetrics, Gynecology and Reproductive Sciences at the University of California, San Francisco, School of Medicine, as well as Clinical Fellow at the National Family Planning and Reproductive Health Association (NFPRHA), where he is an advisor on clinical and reproductive health policy topics. He has served on expert advisory panels of the Centers for Disease Control and the U.S. Office of Population Affairs, contributing to the CDC Medical Eligibility Criteria (MEC) for Contraceptive Use (2016), the CDC Selected Practice Recommendations (SPR) for Contraceptive Use (2016), and Providing Quality Family Planning Services: Recommendations of CDC and the U.S. Office of Population Affairs (2014). He is a member of the Quality/Utilization Advisory Committee of the Partnership Health Plan of California and the California Breast and Cervical Cancer Advisory Council.
Related Episodes
#77: Your Body Your Boundaries - Teaching Sexual Health to Individuals with Special Needs
#79: Better Medical Visits for Patients with Special Needs
#80: Winning Insurance Battles
Find Kim in Instagram at @journey2lomah
***Links to content mentioned in this episode are at www.lomah.org/podcastseason3/84
Cannabis has been used as a medical treatment since ancient times yet still has an attached stigma. Laws are inconsistent from state to state and regulatory gaps with distribution and use exist. How do we responsibly approach this agent as a medical option?
Joining us for the discussion is Dr. David Traver.
Dr. Traver is a board certified pediatrician by The American Board of Pediatrics and an award winning Fellow of The American Academy of Pediatrics. He believes strongly in practicing as a member of a diversified health care team for each patient so he collaborates with many different health care practitioners, both in academic centers as well as in private practice.
Dr. Traver spent two years at Stanford University Medical Center’s Division of Child and Adolescent Psychiatry. There, in The Pervasive Developmental Disorder Neuropsychiatry and ADHD Clinics, he became familiar with the treatment and management of individuals with Autism and ADHD utilizing psychopharmacology. Dr. Traver has been directly involved with autism research for the past fifteen years.
If you are on instagram, find Kim as journey2lomah where she is sharing behind the scenes of their family's journey and partnering with listeners who are doing the same.
There are over 52 million people with disabilities in the U.S. and only 10 percent of dental professionals are prepared to treat them. What is being done about this and is there anything care providers can be doing to better support dental health?
Guest Kyle Guerin is the Executive Director of the Pacific Dental Services Foundation. The Pacific Dental Services Foundation improves oral healthcare to four distinct underserved populations, one of which is patients with special needs. They are leading the charge to make oral healthcare more accessible to people with special needs through training, advocacy and the first dental clinic dedicated to providing care to this underserved population. To date, they have trained over 1500 dentists and have opened a clinic in Arizona.
In this episode, we learn the clinic’s roots are from a dentist, Dr. Jacob Dent, who has a son with autism. Dr. Dent began to take his knowledge and creativity as an autism dad to transform his practice into one that could effectively and creatively treat patients with disabilities.
Kyle then shares tips to finding a dentist who can treat our loved one and how we can, as caregivers, come alongside the dentist prior to the visit to set them up for success.
Related Episodes:
#78 - Dignity & Hygiene
#79 - Better Medical Visits
Find Kim and the LOMAH Podcast on Instagram as journey2lomah
When our faith and beliefs about God take a hit, how should we respond?
Our guest, Diane Dokko Kim is a disability ministry consultant, national speaker, and author of Unbroken Faith: Spiritual Recovery for the Special-Needs Parent. As the mother of children with multiple disabilities including autism and ADHD, her two-fold passions include encouraging families, and equipping local churches into becoming inclusive faith communities.
You host, Kim, has read Diane's book three times and her copy is highlighted, underlined, and has margins filled with ink. Diane and Kim chat about swimming upstream in Christian culture and reaccuring faith struggles they both keep trying to shake. They discuss the structure of the book and why and how Diane choose the format.
Connect with Diane at dianedokkokim.com where she blogs on being, “wrecked, redeemed and repurposed."
Find Kim on Instagram at journey2lomah
When you enter the world of differing abilities you also enter the not so pleasant world of insurance. What are the tips and tricks to ease the pain of this experience and most importantly, get your claim approved?
This episode is one you will want to tag, earmark, and save to revisit again and again. It may require more than one listen to absorb all that you are getting ready to learn about the mystifying and often frustrating world of health insurance.
To demystify the world of denied insurance claims and equip us is Karen Fessel, the executive director and founder of the Mental Health and Autism Insurance Project, a nonprofit with a staff of insurance ninjas talking on insurance companies on behalf of the disability community.
In addition to serving as the executive director of MHAIP, Karen co-moderates the ASDinsurancehelp and ASDMedi-Cal Yahoo users groups. Karen holds a doctorate in public health from UC Berkeley. Her prior work experience includes developing technology assessments and treatment guidelines for the Permanente Medical Group and conducting research projects at the Department of Public Health and UCSF. On the public policy front, Karen co-chaired the autism subcommittee on insurance with the East Bay Autism Regional Task Force and served as a parent advocate on the initial Department of Managed Health Care (DMHC) Autism Advisory Workgroup. She is the proud parent of a 22-year-old son with Asperger's and an 18-year-old daughter.
*Join Kim on Instagram at Journey2Lomah***
Patients with disabilities are often misdiagnosed and sent for diagnostic tests that can not be preformed. Operation House Call is a program that trains the medical field to better treat patients with disabilities.
Operation House Call is part of the curriculum at the Yale School of Nursing, Boston University Medical School, UMass Medical School, Tufts University, and Simmons University. As of May, 2019 Operation House Call is available nationally for medical programs wishing to offer the curriculum.
On the show today is the director of Operation House Call, Maura Sullivan. She is going to share with us the impact the program is having on medical students and nurses who are educated via the 5 components of the curriculum which include an orientation led by self advocates, website courses, a 2 hour immersive visit to the home of a family who has a member with an intellectual or developmental disability, a reflection stage, and feedback from the host family.
In addition to discussing operation house call, Maura shares pending legislation that could have a very positive impact on the medical care the disability community is receiving and she also gives us a few tips and tricks to make our next medical visit run smoothly.
*Kim can be found between episodes on instagram at journey2lomah
Related Episode:
#70 - Do This Not That: Lessons from a Self Advocate
Many individuals with disabilities are dependent on caregivers to present them to society with the dignity they deserve. Some hygiene and care will require creativity, persistence, and continual reminders it matters and our loved one is worth it.
Geege Tayor is widely known in the autism community as a mother who places high standards on the way her son is presented to the world. Geege goes the mile as her son’s dignity surrogate and has several hygiene tips and tricks she has refined over the last 16 years.
The first half of the conversation is a discussion about going the extra mile to ensure our loved ones are presented to the world with dignity and why it matters. The second half covers Geege’s tips and tricks for dental hygiene, fashion, acne, shaving, showering, and haircuts.
Watch Geege and Pootie on their reality TV show by searching Planet Poot on Youtube or on Instagram @geegetaylor
Kim is on Instagram as @journey2lomah
Related Episodes:
#10 Dignity and Disability with Nicole Feeney
Individuals with disabilities are 7 times more likely to be victims of sexual assault, yet they typically are not taught about their bodies nor boundaries for themselves and others. How can we begin these much needed conversations?
To help us navigate this space is Katie Thune. Katie is an educator, author, and advocate for people with disabilities. She has her Teaching License in Health Education, and Special Education K – 12, as well as her MA in Education and worked as a teacher for Saint Paul Public Schools for 12 years. She has done extensive curriculum writing on relationships and sexuality education that can be found, along with other resources, on the website sexualityforallabilities.com
In this episode Katie shares foundational things we can be teaching our loved one such as consent, rules and guidelines around some of the grey areas, public vs private spaces, compliance vs appropriate non compliance, and necessary vs exploitive touch.
Related Episodes:
Episode 69: Self Determination with Complex Communication Needs with guest Karrie Shogren, PhD.
Episode 66: Advocating Against the Sexual Assault Epidemic with guest Julie Neward of Natalie’s Voice
Episode 44: Sexual Assault Risk Reduction with guest Nora Baladerian, PhD, director of the Disability and Abuse Project
As caregivers, we want to be there for our loved ones and we want to be there for many years. Caregiver health is much more important and complicated both physically and emotionally than for the general population. How should we be approaching this important aspect of our role?
Today’s guest, Betsy McNally Laouar not only trains gold medal olympians but is also an autism mom and has been Kim’s personal trainer for over a decade. In this episode Betsy and Kim talk about their complicated journeys toward health and the ways physical fitness is different, and necessary, for caregivers.
Find links to Betsy's best selling books and website on the show notes at www.lomah.org/podcastseason3/76
Related Episodes:
#75 - Physical Fitness in the Special Needs Community
#74 - Caregiver Emotional and Mental Health
Maintaining healthy fitness levels is challenging enough for the general population and can be even more complicated for those with disabilities. What can we do about some of the common barriers so our loved one with special needs is on a path toward health?
To talk to us about fitness in the special needs community is Ryan Lockard, founder and CEO of Specialty Athletic Training. Since its launch in 2012 Specialty Athletic Training has exclusively trained individuals with special needs.
Ryan is going to share with us what his learning curve looked like on making fitness fun for his client and some ideas on how to pay for a trainer using available waiver funding. While Ryan is not a registered dietitian, food is certainly a very large piece of the fitness puzzle and we talk about it and a few things that have brought his clients success.
This is the second episode in a twelve part health series. Topics in the series are: caregiver emotional/mental health, medical cannabis, training physicians to treat special needs patients, hygiene tips and tricks, puberty and body awareness/boundaries, dental exams, pelvic exams and menstrual options, caregiver physical fitness, and caregiver spiritual health.
We know caregiver self care is important but we don’t do it. Why? What is the missing link between knowing what we should be doing and actually doing it?
Rose Reif is the owner of Reif Counseling Services. She is a Licensed Professional Counselor Associate, a Certified Rehabilitation Counselor, and a Qualified Developmental Disability and Mental Health Professional. She is also Board Certified in providing Telemental Health. Her clients are teens and adults with disabilities and caregivers.
In this episode on caregiver mental and emotional health, Kim talks about her own mental and emotional struggles and success the last 15 years as Rose identifies the missing link between knowing the importance of self care and actually taking action.
Links to all items discussed can be found at
Related Episodes:
#51 Aching Joy with Jason Hague
#43 Closet Confessions of a Special Needs Parent
#26 Trauma Indicators in Individuals with Special Needs
The advocacy series ran January 2019 - April 2019. This episode includes a recap and a 60-90 second clip from each episode in the series and 2 things that have changed in the way Kim approaches advocacy as a result of her time speaking with the guests.
Season 3 and a new series will begin mid May 2019 so make sure you have tapped subscribe to ensure these episodes find their way to you once published.
Thank you, guests and listeners, for an amazing Season 2!
You can find us on Instagram as journey2lomah and on Facebook as LOMAH.
What is your advocacy style? Some of us are outspoken and confident while others of us are timid and slow to react. Often advocacy comes with images of anger and confrontation but what if that is not the way we are wired? Can we still be strong advocates?
Michelle Sullivan discusses her advocacy style and journey. There was a time Michelle did not believe her voice had any power but now she is a leader in the disability community bringing change and also empowering others to do the same, all while staying true to her personality and voice. She is the founder of The LIttlest Warrior and host of the Advocate Like a Mother Podcast.
Links to content mentioned in the show can be found at https://www.lomah.org/podcast2/72
“Finding Your Advocacy Style” concludes a 3 month series on advocacy. Episodes in the series include:
-
61 & #62 - Inclusive Housing and Social Change
-
63 & #64 - Inclusive Education: Overcoming the Resistance
-
65 - Inclusion in Faith Based Settings
-
66 - Advocating Against the Sexual Assault Epidemic
-
67 - HCBS Settings Rule, Fair Labor Laws, & Advocating for Choice
-
68 - The Need For Adult Sized Changing Tables
-
69 - Self Determination with Complex Communication Needs
-
70 - Do This Not That: Lessons from a Self Advocate
-
71 - Political Advocacy: Yes You Can
Laura Hatcher is on the leadership team of The Little Lobbyist.
The Little Lobbyists are families of children with complex medical needs and disabilities who seek to educate legislators about our community by showing up in-person with our children (and their trachs, ventilators, oxygen tanks, feeding tubes, wheelchairs, all the stuff) so they can see first-hand who is impacted by laws and programs. Most importantly, they want legislatures to see our kids are just KIDS; who go to school, love to play, and deserve access to the health care, education, and community inclusion they need to grow up to live their best lives. The little lobbyists also seek to educate families with complex medical needs about legislation that impacts us and to empower us to be strong advocates.
In this episode, Laura gives us a pep talk to encourage and equip us to be voices for the disability community.
Links to content mentioned can be found in the shownotes at www.lomah.org/podcast2/71
Related Episodes:
#70 - Do This Not That: Lessons From a Self Advocate with Angela West
#69 - Self Determination with Complex Communication Needs with Dr. Karrie Shogren
#68 - The Need for Adult Sized Changing Tables with Changing Spaces
#67 - HCBS Waiver Settings Rule with Together for Choice
#61 & #62 - Inclusive Housing and Social Change with The Kelsey
How can we best come alongside individuals with differing abilities? Are we unknowingly offensive or even oppressive? Angela West, self advocate, tells us.
Angela is a woman in her 30’s with cerebral palsy. She holds a masters degree, was a Senate Health Education Labor and pensions committee intern, studied at Virginia Partners in Policymaking, and is a former therapeutic recreation activity leader.
Using an augmentative communication device as well as her own voice with an interpreter, Angela answers two questions:
1) What are we unknowingly doing as parents, providers, and supporters of individuals with disabilities that may come across as disrespectful?
2) What types of things did Angela’s parents and supporters do well when she was young to bring her to a place of accomplishment as an adult?
Related Episodes:
Ep. 69: Self Determination with Karrie Shogren from March 2018
Ep. 49 & 50: Person Centered Planning with Erin Sheldon from September 2018
Ep. 28: A Student's Perspective with Jessica from February 2018
Self determination is the process by which one controls his or her own life. Most would agree it is important but does that mean we know how make it a reality for all individuals with disabilities, especially those with complex communication needs?
Karrie Shogren, Ph.D. is a professor at Kansas University in the Department of Special Education, a Senior Scientist in the Life Span Institute, and Director of the Kansas University Center on Developmental Disabilities. Her research focuses on self-determination and systems of support for students with disabilities and she has a specific interest in the contextual factors that impact student outcomes. She has published over 130 articles in peer-reviewed journals, is the author or co-author of 10 books, and is the lead author of the Self Determination Inventory.
The above inventory can be found on the self determination website created by Dr. Shogren and Kansas University which also contains, guides to the self determination learning model, implementation, supplements, ways to break down learning for those w complex communication needs, utilization strategies for inclusive general education settings, and transition planning.
Links to this self determination website and all topics discussed in this episode can be found in the shownotes at https://www.lomah.org/podcast2/69
Related Episodes:
-
31 - Individualized Transition Plan to Guide IEP Goals with Dana Lattin (March 2018). Dana also works at Kansas University and discusses the transition out of the school system into adult services. She provides a variety of transition planning resources.
-
61 & #62 - Inclusive Housing and Social Change (January 2019) with Micaela Connery of The Kelsey. The issue of self determination for those with complex communication needs is discussed as it relates to housing choice.
Changing Spaces is an advocacy movement bringing adult sized changing tables to public bathrooms. When in need of diapering, individuals with disabilities must either be changed on the floor of a public restroom or return home.
In this episode, Christina Abernethy, coordinator of Changing Spaces Pennsylvania, discusses why the need for adult sized changing tables goes beyond hygiene and dignity but also is an inclusion movement. She shares how you, too, can participate in bringing adult sized changing tables to your local community and beyond.
Links to the content discussed in this episode are at https://www.lomah.org/podcast2/68
Ashley Kim is the director and national coordinator of the advocacy coalition Together for Choice. Together for Choice is a 501(c)(3) organization with a mission to unite, to protect, and advance the rights of individuals with intellectual and developmental disabilities to live, work and thrive in a community or setting of their choice.
The conversation covers the complexity of the issues surrounding new HCBS waiver rulings and also the Fair Labor Standards Act. This is a must listen to conversation if you plan on utilizing government funding options for quality of life in adulthood.
Show notes with links to mentioned items in this episode can be found at https://www.lomah.org/podcast2/67
Related Episodes:
Episodes #13 & #14: Campus Model of Housing
Episodes #19 & # 20: Independent Apartment Community Model of Housing
Episode #18: 5 Housing Insights
Episode #23: Creating a Housing Community
Episodes #62 & #62: Inclusive Housing
Individuals with disabilities are 7x more likely to be the victim of sexual assault. After learning of her sister’s abuse our guest, Julie Newart, began an advocacy organization called Natalie’s Voice.
Mission
Natalie’s Voice is a family-driven sexual assault prevention advocacy organization aiming to:
- Raise awareness that people with intellectual and developmental disabilities (I/DD) are highly vulnerable to sexual assault.
- Empower caregivers with effective planning tools.
- Build a community around response so that perpetrators are brought to justice.
Vision
Each and every non-verbal person with intellectual and developmental disabilities will have their voice be heard, by way of loving care providers, through effective planning, adaptive technology, and a cohesive agency response system, in the face of the sexual assault epidemic.
RELATED EPISODES:
#36 - Trauma Indicators for Individuals with Special Needs - Dr. Hoover
#40 - Cameras in Special Needs Classrooms - Dr. Dusty Columbia Embury
#44 - Sexual Assult Risk Reduction - Nora Baladerian, Ph.D
Individuals with differing abilities have much to contribute and our communities are lacking without their presence and influence. This is true in faith based settings as well.
Sandra Peoples is a leading voice and encourager in the special needs community via her online groups, 3 published books, a long running blog. and as a contributor and editor at Key Ministry.
Listen in to this conversation as Sandra and I chat about how important it is for individuals with disabilities to be seen and understood in faith based settings. We follow up with encouragement for families, resources for churches, and nudges for everyone to move forward.
Moving away from segregated and toward an inclusive school environment often is met with resistance or even a lack of self awareness. How can parents, educators, therapists, admins, and those wishing to make changes effectively bring to light areas in need of consideration and also come against resistance to change?
The conversation with Dr. Causton continues in part 2 of Inclusive Education. In part 1 we discussed stages schools move through on the journey to inclusive schooling and also common misconceptions that cause resistance to the idea. In this episode, next steps are given for parents, administrators, and teachers who wish to gather a team and move their school away from segregated settings toward inclusive settings.
The shownotes are packed with amazing (and many free) resources that can be used by teams right away. Find them and everything we discuss at https://www.lomah.org/podcast2/63
Related Episodes:
Episode #57: Pep Talks & Twitter Chats
Episode #56: Accessible Educational Materials
Episode #55: Technology & Teachers
Episode #49: Person Centered Planning
Episode #40: Cameras in Special Needs Classrooms
Episode #34: Non FAPE - 5 Things to Do Before the Next IEP
Episode #31: Individualized Transition Planning to Guide IEP Goals
Episode #25: Think College for Students with Special Needs
Moving from segregated to inclusive school settings is often met with resistance. Does the resistance hold merit and how can educators, students, and parents come against it? What stages do schools pass through when moving toward more inclusive settings?
Dr. Julie Causton, founder and CEO of Inclusive Schooling joins us for a two part episode. Dr. Causton was a Professor in the Inclusive and Special Education Program in the Department of Teaching and Leadership at Syracuse University for the past 14 years. Dr. Causton’s particular areas of expertise are school reform, inclusive teacher training, collaboration, humanistic behavioral supports, lesson planning, and providing invisible adult supports. She also provides independent educational evaluations in due process hearings across the nation relying on her legal knowledge and practical experience.
She is published in over 30 academic journals and has written 6 books for school professionals about inclusive education that are widely read by school teams and teacher education programs across the country. Last year she supported schools in the area of inclusive school reform in twelve states and in several parts of Canada.
Related Episodes: Episode #57: Pep Talks & Twitter Chats
Episode #56: Accessible Educational Materials
Episode #55: Technology & Teachers
Episode #49: Person Centered Planning
Episode #40: Cameras in Special Needs Classrooms
Episode #34: Non FAPE - 5 Things to Do Before the Next IEP
Episode #31: Individualized Transition Planning to Guide IEP Goals
Episode #25: Think College for Students with Special Needs
The conversation continues with Micaela Connery, CEO, and founder of The Kelsey which is a mixed ability/mixed income housing model and social change organization for individuals with and without disabilities.
Part 2 of the interview begins with a conversation about bringing self advocates and other stakeholders to the same table when creating housing solutions. The last half of the conversation begins when Kim poses the question "Does advocating for inclusive models mean advocating against intentional communities?" Micaela shares her thoughts on what is currently a hot topic in disability circles.
Links to items mentioned in the episode can be found at www.lomah.org/podcast2/61
Related Episodes:
- Intentional Communities: The Campus Model on Episodes #13 & #14, Independent Apartment Communities on Episodes #19 & #20
- Peer Advocates on Episodes #49 & #50 (Person Centered Planning)
Micaela Connery is the founder and CEO of a new inclusionary housing development called The Kelsey which is focused on creating an environment of mixed ability and mixed income. The Kelsey aims to be more than a housing development, they aim to be a social change organization expanding inclusion possibilities for individuals with disabilities.
Part 1 of the interview focuses on the logistics of creating The Kelsey and why it is a desirable, yet never before created, model of housing. We are introduced to the term "inclusion natives" and learn why the city of San Jose was chosen as the first Kelsey housing development.
Part 2 is an interesting discussion about how a parents motivation to create housing comes from a different angle and also why, for the future of policy, it is important for inclusionary housing to be an option. The question asked, "Does advocating for inclusionary housing mean advocating against intentional communities/campus models?" led to an interesting discussion. Part 2 of the conversation is the next episode, #62.
Links to The Kelsey and topics discussed in these episodes are at www.lomah.org/podcast2/61
What information will you find on the LOMAH Special Needs Podcast and who is on the other side of your speakers? This quick episode answers these questions.
Show notes with helpful links of each episode can be found on the LOMAH website under the Podcast tab.
In this episode, Kim shares what she learned and is implementing from guests in the technology series. Along with these lessons are clips from each guest so listeners have a quick reference to find episodes of interest.
Additional episode detail from the series and links can be found at https://www.lomah.org/podcast2/59
Episodes in the tech series:
#48 - Augmentative & Alternative Communication
#49 & #50 - Person Centered AAC
#52 - Curated and Reviewed Apps
#53 - Is Technology the Caregiving Solution
#54 - Virtual Reality Social Cognition Training
#55 - Technology & Teachers
#56 - Accessible Educational Materials
#57 - Pep Talks & Twitter Chats
#58 - Easy Technology Solutions
Reasonably priced and easily accessible technology marketed toward able bodied individuals also has the alternative perk of bringing independence and improving quality of life for those with disabilities. Venkat Rao of The Assistive Tech Blog shares several examples in this episode as well as his favorite products just entering the market
Links to mentioned content can be found at https://www.lomah.org/podcast2/58
Related Episodes:
#56: Accessible Educational Materials w/ Luis Perez
#53: Is Technology the Caregiving Solution w/ Simply Home
#52: Curated and Reviewed Apps w/ Bridging Apps
#49 & #50 Person Centered AAC w/ Erin Sheldon
Effectively utilizing assistive technology for individuals with special needs requires more than access to the latest gadgets, apps, and tools. More important is the process leading to the correct gadget, app, and tool.
Mike Marotta is an assistive technology support specialist with an extensive resume spanning 30 years with the special needs population. In this episode, Mike shares the process he uses and gives us the confidence to do so as well. He points us to places our questions can be answered (hint: hashtag!).
Be sure to check out Mike's podcast called Assistive Tech for All.
Links to items mentioned in this episode can be found at https://www.lomah.org/podcast2/57
Accessible Educational Materials make it an exciting and promising time for those with print disabilities. Luis Perez points us to the many available resources.
Luis Perez is the technical assistance specialist at the National Center on Accessible Materials at CAST. He has multiple degrees and publications. He is an Apple distinguished educator, a Google certified educator, president elect of the inclusive learning network, and selected as the 2016 outstanding inclusive educator by the International Society for Technology in Education.
Show notes for this episode include several links and can be found at https://www.lomah.org/podcast2/56
Dr. Stephanie Talalai is a special education teacher at the A. Harry Moore School which is known for its creative utilization of technology for students with special needs and disabilities. Dr. Talalai is largely responsible for this reputation. Several years ago she saw the need to implement more technology so she both created and filled a position within the school to do so. She is a Google Certified Educator and in this episode gives us ways to share, learn, and implement technology into special education settings even when on a tight budget.
Links to mentioned content at https://www.lomah.org/podcast2/55
Related Episodes:
- Secondary and Post Secondary Education Series - Episodes #24 thru #34
- Cameras in Special Education Classrooms - Episode #40
- Lockdown and Crisis Drills in Special Education Classrooms - #46
Social cognition and self advocacy do not always come naturally so may need to be taught. A program at the Center for Brain Health in Dallas Texas called, Charisma, is teaching clients these and other social skills via a game based learning environment. Avatars are created for the client and therapists while real time and customized social situations play out in the virtual world. Therapists are able to offer immediate feedback to the client that research shows carry over into real life social settings.
Tandra Allen, an SLP with the Charisma project, joins us to discuss how the program works and who it is working for.
Shownotes and a video of what the "game" looks like can be found at https://www.lomah.org/podcast2/54
Related Episodes
Episode 28: College & High School, A Student's Perspective
Episode 25: College & High School, Think College
Episode 4: The Caregiving, Celebrating Balancing Act
How is the adult special needs community going to receive adequate supports, maximum independence, and safety with the limited budgets available in most states?
Could technology be the answer?
Jason Ray from Simply Home joins us for a discussion on how homes customized with technological adaptations are providing dignity and independence for those with disabilities while saving service providers and families thousands of dollars.
Links to items mentioned in this episode are at https://www.lomah.org/podcast2/53
Ipads and smartphones have been game changers for individuals with special needs. Device apps are providing an avenue for communication, learning and independence. BUT, there are over 2 million apps to choose from with over 1000 being added to the store every day. How can we possibly keep up with what is available and know if they are applicable?
This conversation with Cristen Reat, cofounder of Bridging Apps, is going to save you time and money by pointing to an up to date, curated, reviewed, and filtered lists of apps. Some of these apps you may never have considered using in the unique ways suggested for an individual with differing abilities.
Links to everything mentioned in the episode can be found on the show notes at https://www.lomah.org/podcast2/52
Related Episodes:
#48-Augmentative & Alternative Communication (communication apps)
Jason Hague, author of Aching Joy joins us to discuss the tension we often experience when feelings of joy are paired with feelings of pain. Should we strive to feel one more than the other? Is that even possible? What about hope? Should we allow it into our lives or is keeping the expectations low our only shot at happiness? Show notes available at https://www.lomah.org/podcast2/51 which include links to Jason's work and also the 2 videos we mention in the episode.
Part 2 of our conversation with Erin Sheldon, CEO of Integration Action for Inclusion, focuses on how to stay person centered with augmentative & alternative communication device users.
Related Episodes:
#49: Person Centered Planning
#48: Augmentative and Alternative Communication
#34 - Non FAPE? 5 Things to Do Before the IEP Meeting
#33 - Homeschooling With a Twist
#29 - College of Adaptive Arts
#28 - College & High School: A Student’s Perspective
Person centered planning is not a system or policy but rather a way of thinking. It asks that we momentarily put aside what is currently offered and focus on what is important to an individual with special needs before thinking about what is important for them to fit in the existing system.
Our guest is Erin Sheldon who is the CEO of Integration Action for Inclusion, an organization supporting and empowering inclusion advocates.
Related Episodes:
#33 - Homeschooling With a Twist
#34- Non-FAPE? 5 Things to Do Before the Next IEP Meeting
#29 - College of Adaptive Arts
#21 - College & High School - A Student's Perspective
Rachael Langley is a speech language pathologist specializing in augmentative and alternative communication (AAC). Rachael talks with us about finding an AAC specialistaided facilitated stimulationcommunication autonomyavoiding prompt dependencyovercoming obstacles parents, teachers, and support staff face in becoming fluent AAC users BONUS MATERIAL IN SHOWNOTESdeveloping literacy skills in nonverbal learnersportable carrying casescompatible AAC software***links to everything mentioned in the show
SHOWNOTES AT www.lomah.org/podcast2/48
In this episode, you will get to hear snippets from each guest in the 12 part safety series and the three big takeaways from the host.
- Know bad things can and do happen.
- Know how to tell if something bad is happening.
- Know what to do.
This episode is a quick listen and one to use if you are just finding the safety series and want to hear from each guest prior to choosing what to listen to next.
The safety series includes episodes #36 - #47
Would your loved one with disabilities have the support necessary to stay safe in the event of an on campus crisis? Are you a special educator? Would you have all you need to keep your students safe?
needs. Combining her background as a special educator and mother to a son with disabilities, Dr. Laura Clarke and her colleague created one of the first and only crisis preparedness models for students with disabilities.
This is an episode you are going to want to share with administrators or anyone responsible for the safety of children with special needs in a crisis situation.
Related Episodes:
#37 Emergency Responder Training
#40 Cameras in the Classroom
Dr. Lauren Moskowitz is known for her work with self-injurious behavior in individuals with special needs. In this episode, she helps us understand why SIB is happening and discusses ABA as a method of treatment.
Links to items discussed at www.lomah.org/podcast2/45
Related Episodes: #36 Trauma Indicators, #37 Emergency Responder Preparation, #39 Restraint & Seclusion
As parents, we need to be aware there is a heightened risk of sexual abuse for our loved ones with disabilities.
Nora Baladerian is the director of the Disability and Abuse Project and the recipient of many distinguished awards. She conducts seminars and training across the country and is often consulted by attorneys litigating cases of assault on a victim with disabilities.
Dr. Baladerian educates us on who the perpetrators are and why they target those with special needs. She teaches us 10 things to do when abuse is suspected, as well as tools to utilize before, during, and after sexual assault.
Links to items mentioned in this episode, including the Risk Reduction book, can be found at www.lomah.org/podcast2/44
The kids were in danger and didn’t even care. This is a raw and real look at how stress impacts our physical and mental capabilities to parent. (Please don’t judge.)
Related Episodes:
-
36 - Trauma Indicators
-
12 - Finding and Hiring Caregivers
-
08 - Vacation or Relocation?
-
07 - Vacation Hacks
-
04 - The Caregiving, Celebrating Balancing Act
What is the connection between autism and epilepsy? Does one cause the other or are other factors at play? When is the first seizure most likely to happen? Are they harmful? Can they be missed? When do we need to call 911?
Our expert guest, Dr. Roberto Tuchman, is chief of the neurology department at Nicklaus Children's Hospital in Miami, Florida. He has explored the autism/epilepsy connection for decades and is a highly sought after resource on the topic.
In Episode 42, Dr. Tuchman shares what he is discovering regarding the autism and epilepsy connection and also speaks to us as a practitioner who has much experience guiding caregivers who have a loved one with autism and/or epilepsy.
Related Episodes: 41 - Assistance Dogs
Have you considered adding an assistance dog to your team of support? Assistance dogs can bring independence, safety, comfort, dignity, companionship, (and cuteness) to the special needs team. The process is quite lengthy and choosing the right organization is important.
Paws with a Cause has been training assistance dogs for those with disabilities since 1979 and is considered one of the best programs in the country. Deb Davis has been working with Paws with a Cause for 25 years and in this episode helps us understand the difference between assistance, service and therapy dogs. She tells us what to look for when choosing an organization including a long list of questions to ask. We learn the red flags that should give us "paws". We also will learn more about what to expect during and after the application process as well as volunteer opportunities.
Links to items discussed in the episode can be found in the show notes. Click here.
We have seen too many stories on the news of cameras and other recording devices documenting poor treatment or abuse of special needs individuals. Would placement of recording devices in the spaces individuals with disabilities are receiving services help protect this vulnerable population? If, yes, then why isn't it being done and how can that change?
Dr. Dusty Columbia Embury of Eastern Kentucky University leads the discussion on the topic from her perspective as a classroom educator, researcher, and mom of a child with special needs.
Content to items discussed in this episode can be found here.
Related Episodes:
#36 - Trauma Indicators of Individuals with Special Needs
#39 - Restraint and Seclusion of Individuals with Special Needs
This episode is a must listen from beginning to end for parents, educators, and providers of individuals with disabilities.
Restraining someone against their will or placing them in an area of seclusion where they can not get out are still widely used methods in the special needs community.
Why?
Today’s episode addresses this question.
Click here for links to content mentioned in this episode.
Wandering and elopement are stressful and scary scenarios that, unfortunately, can end tragically. Emily Diamond, a professor, and researcher at the Wright Institute in Berkeley joins us to provide ways parents can take a proactive approach of putting plans in place so that our loved one with disabilities can be found quickly should he or she go missing.
Click here for links to information mentioned in this episode.
When 911 is called and an individual with special needs is on the scene, it can be at best confusing and at worse fatal. It is important for caregivers and providers to prepare in advance.
Dennis Debbbaudt has spent over 25 years providing training for first responders who may come into contact with individuals who have autism and disabilities. He has since produced over 40 related books, reports and training videos. He has and is creating a training curriculum for departments around the US and globally.
On today's show, Dennis shares with us what we can be doing as parents and/or care providers to prepare for an emergency and the potential interaction of our loved one with special needs and the first responders.
Click here for links to information mentioned in this episode.
Identifying and recovering from trauma can be complicated for our loved one with special needs. There are only a handful of professionals in the country providing therapy for individuals with disabilities who have experienced trauma. Dr. Daniel Hoover of the Kennedy Krieger Institute (a partner of John Hopkins School of Medicine) is one of them. In this episode, he shares 3 red flags indicating trauma may be happening or may have happened and 3 things parents can do in partnering with the doctors to begin the recovery process.
Click here for links to content mentioned in the episode.
Season #1 of the LOMAH podcast has come to an end. Before moving along to season #2, we share lessons from the last year and follow up on past guests.
Shownotes at https://www.lomah.org/podcast/35
Students with special needs are entitled to a fair and appropriate education, commonly called FAPE. Sometimes parents idea of FAPE differ from the school district and can be met with resistance.
In today's episode, we share 5 steps to take before presenting your idea to the IEP team.
We also veer off topic to discuss:
- The importance of being age appropriate with our special needs teens & adults
- Peers and cultivating friendships (for more on this topic listen to episode #06)
Use the show notes or www.lomah.org/podcast/34 to schedule:
- A consultation with Annette
- Book Matteo at a public speaking event
- The link to Matteo's website with his poetry, art, and weekly videos.
Annette Musso began an alternative form of education for her son with autism during the elementary school years that is a twist on homeschooling.
We cover this “homeschooling twist” in two episodes. Episode #33 reveals what it is and how it came to be, and in episode #34 we go into practical tips in partnering with the school district to craft a unique plan for your learner with disabilities.
Links to items mentioned, including Matteo's poetry and books can be found by clicking here or visiting www.lomah.org/podcast/33.
Applied Behavioral Services is a school in the Midwest who, for 20 years, has been working with students that have autism or related disorders. They currently serve over 250 special needs students and 35 school districts per day. In this episode, we will be inspired to blaze trails that do not already exist for our children with special needs. We also talk about the importance of narrowing the focus on goals long before students with disabilities approach "the cliff" of decreased services in adulthood.
Show notes with links to items mentioned in the show can be found here.
Related Episodes: Begin with Episode #24 and work your way up for the series on high school and college education as a tool for transitioning students with special needs into adulthood.
"Falling off the cliff" refers to what happens to young adults with special needs upon exiting the school system and losing services that were once readily available. One of the most important things that can be done to prepare for the shift in services is focus on the Individualized Transition Plan which is a federally mandated document guiding IEP goals beginning at the age of 14 or 16.
Dana Lattin, project coordinator of the Transition Coalition, will talk with us about :
- What we need to be exposing our special needs kids to and thinking about now in order to prepare for the future
- Keeping records of interests and strengths to share with the special education planning team and examples of ways to do this
- Person-centered planning
- The three categories that drive special education transition (from a legal standpoint)
- Assessment tools for educators and parents
- Places to find resources and assessment tools for special needs students
Click here for the show notes containing links to all mentioned content or go to www.lomah.org/podcast/31
At 18, parents no longer have legal access to educational information. IEP consent, requests for assessments, and information from educators are just a few rights that transfer from the parent to the student. Today’s guest, a special needs attorney, offers insight on how to prepare and how to protect the rights of our adult child while at the same time offering supports s/he may still need. Our focus will be on education. The first half of the episode focuses on students with special needs who plan on attending college. The second half of the episode focuses on students with higher support needs who are likely to stay in transitional programs offered by the public school system.
Links to the items we discuss are at www.lomah.org/podcast/30
The College of Adaptive Arts is a new model of education with a commitment to lifelong learning paired with empowering students to creatively transform the way the world views individuals with disabilities. Students have 9 tracks of study in which to choose and over a dozen departments of specialty. While diplomas are earned, there is no exit date which allows lifelong access to education. In this episode, the founding directors share the core beliefs driving the mission of CAA and their vision of a future where this model of education for adults with differing abilities can be found on campuses throughout the country.
Links to the College of Adaptive Arts and topics mentioned in this episode can be found at www.lomah.org/podcast/29
Jessica is a student at the University of Cincinnati’s TAP program. TAP is a college program for students with special needs and/or disabilities discussed in episodes #25 & #27. She shares with us how she became a college student, the challenges she and her family faced the first year, areas she has grown, how the program is preparing her for a dream job, and her social life on campus.
www.lomah.org
The Transition and Access Program (TAP) at the University of Cincinnati is an example of a program offering opportunities for college students with disabilities as discussed in episode #25.
Diane Clouse, director of TAP, answers our tough questions:
- Do the benefits of these programs outweigh the cost?
- When does Vocational Rehabilitation come into the picture?
- Will out of state students loose benefit eligibility from their home state?
- How can college be funded?
Access the show notes with links to items discussed in this episode by visiting www.lomah.org/podcast/26
3 programs for individuals w special needs exist on the campus of the University of Cincinnati collectively known as Advancement and Transition Services (ATS). The 3 programs serve a wide range of ages, from 14 to mid-adulthood, and also a wide range of abilities from minimal supports to high support needs. Christina Carnahan, director of ATS joins us to discuss:
CEES - A program for high school students age 14-21 to develop vocational and social skills for increased independence
IMPACT INNOVATION - A year-round program for adults with higher support needs which focuses on lifelong learning, health & wellness, and vocational exploration.
Christina explains the programs, offers IEP advice, and shares who to call in your area to loop into or begin similar programs.
Shownotes can be found by clicking www.lomah.org/podcast/26
Think College is funded by the US Department of Education as a national coordinator for transition and post-secondary options for students with intellectual disabilities. Cate Weir is the program director of the organization and will discuss college as a transition option for individuals with special needs as well as who is and is not eligible, program curriculum, on campus supports, IEP goals to prepare for college, and where to find resources.
Shownotes with links to resources mentioned in the episode can be found by clicking www.lomah.org/podcast/25
High school and college education for teens and young adults with special needs and/or disabilities will be the focus of the next several episodes. Experts will be answering questions regarding options, supports, and what we should be doing to prepare for the transition from high school to college and/or employment. This introductory episode gives the backstory of why Kim is asking a lot of questions on the topic and 3 action plans for her daughter.
Show notes can be found at www.lomah.org/podcast/24
Desiree Kameka from the Madison House Autism Foundation joins us again this week with inspiring stories of special needs housing communities that have formed and are forming as well as tools for YOU to use should you want to create something similar.
Links to items mentioned in this episode are available on the show notes at www.lomah.org/podcast/22
Desiree Kameka works for the Madison House Autism Foundation where she serves as the director of community engagement and also is the director of a branch of the foundation called the Autism Housing Network. She is the national coordinator for the advocacy group Coalition for Community Choice and she also serves as a host home provider.
Desiree will be with us for episode #22 and #23. In this episode, she shares ways in which we can begin to educate ourselves on housing issues, offers tips for easy advocacy, and encourages us to begin doing 4 things as soon as possible.
The Family Home is the most common housing model for adults with disabilities. Often this model "happens" rather than being chosen and planned. However, intentionally choosing the Family Home Model and putting forth the same amount of planning and work as any other model can make it a highly desirable option. Today we are speaking with John and Susan Nadworny, who have spent several active decades in the special needs world bringing about policy change and creating opportunities for teens and adults with disabilities. John and Susan have chosen the family model and have put in a lot of work to make it an ideal set up for their son with disabilities, themselves, and their neuro-typical adult children.
For links to topics discussed in this episode visit www.lomah.org/podcast/21
This is part 2 of our conversation with Aaron Vorell, the executive director of an IAC called Casa de Amma.
In this episode, we discuss the need for more housing, the IAC symposium, finding a core group to partner with in creating housing, talent necessary on a board of directors, public vs private funding, low income tax credits, and HCBS waivers.
Independent Apartment Communities are a new(ish) housing model for adults with disabilities. IACs are similar to the traditional apartment model in the freedom of choice that comes with living and maintaining one's apartment with or without roommates. The difference, as the name indicates, is the community piece. IAC's are staffed to provide around the clock supports, meaningful social opportunities, and both scheduled and non scheduled social outings and activities. They are a smaller community to call home located within the larger community or town residents are also a part of.
Aaron Vorell is the executive director of one of the first IAC's called Casa de Amma and he also serves on the board of directors for other existing and in development Independent Apartment Communities. He shares his experience and insights with us in Episodes #19 & #20.
We are at the halfway point of our housing model series. Our guests have helped us understand the campus model (Episodes #13), the group home model (Episodes #15), and the host home model (Episode #17). This week we pause and reflect. Thus far, Kim has had 5 a-ha moments.
- Utilize a variety of models rather than just one
- Organizations providing housing need to have business savvy
- The state you live in makes a BIG difference
- Our adult children might do better with another caregiver
- Money matters
Integrated Life Choices is a premier example of successfully executing the host home model for adults with special needs. One of Shanda McClaren's many roles with the company is to pair adults utilizing this model with a host home. In this episode, Shanda shares with us who is best suited for this model, what guardians do and do not give up when utilizing this housing model, how long placement takes, and how to proceed should this be your housing model of choice.
Our interview with Dana Hooper, executive director of Life Services Alternatives, continues. In #16 we address pros and cons of group homes, the importance of choice, and how being treated with respect and dignity can literally be a matter of life or death. Dana gives tips on what to look for when choosing an organization for our loved one and how the process of being placed in a group home works.
We conclude with a discussion on long wait lists and what we can do about it.
Group Homes, also referred to as Community Care Facilities, are residential homes within the community housing a number of unrelated individuals with disabilities and/or special needs.
LOMAH speaks with Dana Hooper, executive director of Life Services Alternative (LSA) in episode #15 & #16. LSA has 11 (soon to be 12) group homes in the Silicon Valley area of California and is considered to be one of the best examples in the country of the group home concept.
In this episode, Dana gives us a peek at the business skills necessary to run quality programs that have longevity and stability. Topics covered include the hiring process, rates, financial strategy, and how decisions are made for the organization.
This is the sequel to episode #13 on the campus model of housing for adults with disabilities. Scott McAvoy of Marbridge shares insights on the complexity of emotions parents face when considering moving their adult children out of the family home, including financial barriers. Also discussed is a unique way Marbridge staff focus on abilities rather than disabilities.
We begin our housing series for adults with disabilities by focusing on the campus model. Marbridge is an exemplary example of the campus model and in the next two episodes, we speak with Scott McAvoy who is the VP of operations. In this episode, we learn how Scott found himself in that role and what it takes to create a community like Marbridge.
If you need a refresher on what the campus model is, listen to minutes 18:30 - 21:30 of episode #11.
Mike is the father of 25-year-old Ben. Through the years, Mike and his wife have applied their experiences with Ben and also their knowledge from the corporate world to create a system of finding, hiring, and keeping quality caregivers for individuals with special needs. Today, Mike shares the beginning stages of the process and a valuable resource to learn more.
If you have a loved one with a disability, you may have begun pondering where s/he will live as an adult. It doesn’t take long to realize there are a variety of options but not an abundance of them. Today we go over the models of care, share a must have resource, and suggest next steps to take in planning housing for your adult with special needs.
Today's guest, Nicole Feeney, wrote an article which spurred passionate debate. She feels caregivers of individuals with disabilities should put forth extra effort to ensure the dignity of those in our care regardless of the extra effort required. But is that true? Shouldn't society just be more accepting? Take a listen and assess which side of the debate you fall.
The Arroya Family has dreams of beginning a farm similar to many currently in existence for adults with special needs. In preparation, they put the family belongings in storage and began an epic road trip to visit 25 farms across the country. Amy Arroya shares with us what they are learning and a simple question serving as the compass for their adventure. Learn what the question is and consider asking it to plan a future for your special needs loved one.
In the last episode, Vacation or Relocation?: Special Needs / Disability Travel, you heard three arguments in favor of travel. While the last episode focused on why go, this episode focuses on what to do upon arrival. Kim tosses out a few vacation hacks that have been helpful for her family. Hopefully, they will be beneficial to you, too!
Vacations can feel more like relocations because the demands we have at home exist regardless of location. Is it worth it to go through the planning and hassle, especially when traveling with someone who has special needs / disabilities?
Episode #6 dives into cultivating friendships for our special needs children, especially as they enter the preteen and teen years. You will walk away with 3 unique nuggets of wisdom & application from our guest, Stacey Martin, who seems to have cracked the friendship formula for her (soon to be) 17-year-old daughter.
Alex Krem, Sr. was the founder of Camping Unlimited. This year marks 60 years of providing camping opportunities for children, teens, and adults with special needs. It is now run by his granddaughter, Christina Krem, along with Katie Giampa
Today, we are chatting with the middle generation, Alex Krem, Jr., about the unique objective of Camping Unlimited as well as his vision to carry things over into long-term living solutions for adults with special needs.
Special needs parents do a lot of caregiving and a lot of advocacy. But, do we do enough celebrating? How do we even know the answer and what happens when the scales are tipping too heavily to one side?
This is where we are headed today BUT just when it seems we have things figured out...a guest will join us to put breaks on the whole thing forcing us to stop and rewind a bit.
Are we expecting too much? Are we expecting too little? Does the team agree on realistic goals? What about your spouse? Is there disagreement over the capabilities of your child? Episode #3 looks at behavior, education, independence, and receptive communication. When is the tendency to overestimate our special needs loved one and when is the tendency to underestimate? How do we know which voice to follow?
At least twice a year, Kim travels across the country via airplane with her special needs daughter. After dozens of flights ranging from nightmarish to dreamy, she has learned a few things.
This episode tosses out 10 tips from the obvious (utilize TSA cares) to the unconventional (choose a seating pattern in an L shape rather than straight across).
If you are about to board the plane with your special needs loved one, this episode should be part of your travel preparations.
Many terms circulate in the special needs circle. When Kim's daughter became a teenager, she started to hear grumblings about what was around the corner.
The terms "aging out" and "falling off of the cliff" were used interchangeably.
- What do these terms mean?
- When does it happen?
- What are parents doing about it?
- What does it mean for our special needs loved ones?