LOMAH Disability Podcast (LOMAH)

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.

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.

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

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.

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.

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.

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.

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.

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.

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

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

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

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

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

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.

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.

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.

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

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? 

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.

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

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

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

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.

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!

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

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

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.

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

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:

1. Raise awareness that people with intellectual and developmental disabilities (I/DD) are highly vulnerable to sexual assault.

2. Empower caregivers with effective planning tools.

3. 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

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. 

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

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

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

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 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

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

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.

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.

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

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.

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

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

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

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. 

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

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 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.

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

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.

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.

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***

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

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

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

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?

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

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

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

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 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

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 

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

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.

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

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.

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

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.  

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

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.

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

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. 

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

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

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.

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. 

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.

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

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. 

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

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.

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

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

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.

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

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• 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.

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

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

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. 

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

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.

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***

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.

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

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.

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

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

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

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

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

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