LOMAH Disability Podcast

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 [email protected]

This episode is the last in a series focusing on expanding the boundaries often placed around AAC use.

AAC users often have to, first, assert authority over their self care staff. Our guest who exclusively communicates via AAC shares tips and tricks she has learned over the years on hiring and training staff. About the Guest

Hannah Foley is the Product & Service Development Intern and an Ambassador at PRC-Saltillo, where she develops training and implementation supports for PRC-Saltillo language systems. She also represents PRC-Saltillo at speaking engagements and other events. Hannah presents at school districts across the country on effective inclusion and augmentative and alternative communication (AAC) implementation practices within homes, communities, and schools of those with complex communication needs. She is currently attending the University of Illinois at Chicago to complete her Assistive Technology Certification with a concentration in AAC for education. Hannah aims to pursue a professional career in AAC training and implementation to facilitate collaboration and effective training for implementation of AAC among all members of support teams.

Communication between provider and patient is a crucial component of quality care which is why extra thought and planning need to be arranged for augmentative and alternative communicators.

About the Guest: Jessica Gormley, Ph.D., CCC-SLP of The Patient-Provider Network

Jessica Gormley, PhD, CCC-SLP is an Assistant Professor, Speech-Language Pathologist, Research Coordinator and Interim Director in the Department of Speech-Language Pathology at the UNMC Munroe-Meyer Institute. Dr. Gormley earned a Bachelor of Science degree in Speech and Hearing Handicapped from the State University of New York at Geneseo, a Master of Arts in Speech-Language Pathology from the State University of New York at Geneseo, and a PhD in Communication Sciences and Disorders from Pennsylvania State University.

She provides inpatient and outpatient augmentative and alternative communication (AAC) services as well as completes AAC research and program development activities. Her research and clinical interests center upon improving interactions among individuals with complex communication needs, their families, and health care providers through the development and evaluation of AAC tools and trainings.

Dr. Gormley is a co-organizer for the Patient-Provider Communication Network along with Tami Altschuler and Rachel Santiago. Dr. Gormley has co-authored several peer-reviewed articles and book chapters on the topics of supporting AAC in acute care, personalization of patient-provider communication, and child-parent-provider communication interactions.

Links to Mentioned Content:

• Patient Provider Communication Network

• Bimonthly Zoom Call

• Article on Creating a Culture of Communication

• Widget Health downloadable resources

• Patient Provider Communication Network Downloadables

• Patient’s right to access to communication via the Joint Commission and other policies supporting patient communication

• Article about system changes in hospitals and other articles on AAC in medical settings

The internet has swung the door wide open for alternative and augmentative communication users, yet often the creative use of these tools is never introduced. It’s time to expand how AAC users maximize devices as well as how to navigate online communities that they now have access to via AAC.

About the Guest: Tiffany Joseph

Known as Nigh Functioning Autism on instagram, Tiffany has 3 neurodivergent children and is autistic. Tiffany’s ultimate goal is for nonspeaking individuals to all have early access to full communication and inclusion in educational settings from early childhood and beyond. She is an intern at Reach Every Voice, training to be an instructor and communication and regulation partner for nonspeaking or minimally speaking individuals of all ages.

In today’s conversation Tiffany will use a combination of spoken voice and AAC voice.

This episode is the 4th in a series of 10 focusing on expanding the boundaries often placed around AAC use.

Many AAC users are dependent upon others to program language onto their device. Despite what research shows regarding common language in various age groups, it is common practice to censor slang, slurs, and swearing even for adults.

 

About the Guest:

Hali Strickler is an AAC services coordinator for TechOWL at the Institute on Disabilities at Temple University. She received both her Bachelor and Master of Arts in Speech, Language, and Hearing Science from Temple University. Hali is a Pennsylvania and New Jersey licensed and American Speech-Language-Hearing Association certified speech-language pathologist.

Links to Mentioned Content:

• Article - A Child’s Garden of Curses by Kristin L. Jay and Timothy B. Jay

Relevant Episodes:

• #116: Touching of Self and Others from July, 2020 in the Complicated Behaviors Series

• #77: Your Body, Your Boundaries from June, 2019 in the Health Series

This episode is the 3rd in a series of 10 focusing on expanding the boundaries often placed around AAC use.

Brittany Dube is and autistic partial AAC user who shares the stigma she often experiences when choosing AAC over her spoken voice despite how AAC makes her more communicative. Links to Mentioned Content:

• Etsy has several sellers creating personalized communication boards. Brittany’s came from the seller Coatney Creations.

• The quote referenced came from an article about partial AAC use in communicators with speech written by Alyssa Hillary Zisk and Elizabeth Dalton. It was published in April, 2018 edition of The Autism in Adulthood Journal.

This episode is the 2nd in a series of 10 focusing on expanding the boundaries often placed around AAC use.

Often, AAC is used for nothing more than to make requests. While requesting wants and needs is important, AAC can offer much more to complex communicators and those who wish to know them. About the Guest: Kate McLaughlin, M.S., CCC-SLP

Kate McLaughlin is a speech-language pathologist specializing in AAC - alternative and augmentative communication for individuals with complex communication needs.

She believes that autonomous communication, inclusion, and self-determination are fundamental human rights. She partners with individuals with complex communication needs and their families to support their AAC journey.

Kate is a certified member of the American Speech-Language and Hearing Association and holds licensure as a speech language pathologist in the state of Connecticut. She has worked in home, school, and clinic settings with clients of all ages. Kate trains parents and professionals on proven strategies to support their learner’s authentic and autonomous communication.

Links to Mentioned Content:

• Kate’s website, The AAC Coach

• Follow Kate on Instagram and Facebook

• Kate’s course “Authentic AAC”

• Talking Mats

• Kim’s IG live from May 20, 2022 authentically communicating with Miranda

Relevant LOMAH Podcast Episodes :

• Literacy Series in Season 5: Episodes 131 - 146 from Spring 2021

• Episode 148 from September, 2021: Finding Clarity Among So Many Therapy Options

The new series will focus on "Doing More With AAC". This episode gives a peek at the topics that will be covered with expert guests, many who are AAC users themselves.

The second half shares a few life updates relevant to the LOMAH tagline "Planning the future for our daughter with disabilities and inviting you to fumble through it with us". There has been some great news regarding the next 3 years (Miranda's transition years ages 19-22) as well as an update even closer to home.

 

 

Most adult supports are chosen via eligible providers on HCBS waiver lists. However, some states have been toying with a new method that offers more flexibility and choice. In this conversation we explore what families have and have not liked about the newly rolled out Self Determination Program and why our family has decided to move away from provider lists and into this new option of funding supports.

About the Guest: Sonni Charness, Founder of Guidelight Group

Sonni Bendetson Charness brings over a decade of experience serving teens and adults with developmental disabilities and is an expert in community integration and employment supports. Sonni leads the team at Guidelight Group and also works personally with clients. 

Sonni's work on transition-to-adulthood and employment has been published in the Journal of Vocational Rehabilitation and in Research and Practice for Persons with Severe Disabilities. Sonni has been a featured expert on the LOMAH podcast and as a presenter at countless conferences including TASH, the Supported Life Conference, and the Statewide Conference on Self-Determination. 

Sonni is a member of the Board of Directors for California APSE, the state chapter of the nation’s leading advocacy organization promoting employment for people with disabilities. Sonni is a Certified Employment Support Professional (CESP), and is trained in Person-Centered Thinking and Independent Facilitation. 

Sonni obtained her master's degree in special education at Vanderbilt University, where she specialized in transition-to-adulthood and employment outcomes for students with moderate/severe disabilities. Sonni earned her bachelor's degree in child development from Tufts University.

Links to Mentioned Content

• Sonni on the LOMAH Podcast for the Transition Series - Episode #95 - School to Adult Services: Filling the Gaps

• Disaability Voices United

• Self Determination Program Connect Zoom Meetings

• Presentations on the San Gabriel / Pamona Regional Center YouTube channel presented by Guidelight Group.

Conservatorship has long been the route to providing supports to disabled individuals with they turn 18. However, a new option called supported decision is an alternative that supports the person in making their own decisions rather than giving up rights through the conservatorship option.

About the Guest:

Lauren Butterworth, Esquire PLLC received her Bachelor of Science from Penn State in education and was a teacher prior to returning to school for her law degree. She now owns her own law firm specializing in guardianship, powers of attorney, estate planning, trusts, and educational advocacy.

Mentioned Links:

• Financial Planning Series - LOMAH Podcast episodes 101 - 112
• National Resource Center for Supported Decision Making
• Special Needs Alliance
• Laurens FaceBook page