LOMAH Disability Podcast

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.

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.

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?

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***

• 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

• #94 - Disability Employment: Is it Really Possible for All?
• #92 - Preparing Students with Disabilities for Specialized College Programs
• Transition Planning Series Episodes 86 - 98

Complex needs necessitate a more specialized approach toward therapy. Often the “Big 3” of speech, OT, and PT are not specialized enough to address complex needs. This episode takes a look at how niche therapies fold in the The Big 3 and where trends seem to be headed.

Laura Hayes is a speech-language pathologist with over 12 years of augmentative communication experience in both school and medical settings.

Laura has presented locally and at state, national, and international conferences such as the Missouri Speech-Hearing Association, ATIA, and the Pediatric Perspectives Conference. She has been published and supported both inpatient pediatric and educational augmentative communication research. She currently hosts a podcast for her school district titled: “Innovative AAC Solutions”. She loves providing training, implementation resources, and guided direction to help with success using AAC. She can be followed for more resources and ideas on Instagram @aac_innovations.

• Kim’s conversation w Chris Bugaj on the Talking With Tech Podcast about technology
• Inclusive Learning 365 book about integrating tech
• Chickadee AAC
• Sarah Gregory
• Rachel Mandell
• Episode w Jacklyn Googins where she discussed research based approaches to therapy

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.

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.

• 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 Trustee of a Special Needs Trust has an incredible amount power over the distribution of funds for the individual with disabilities. Not only must they act in the best interests of the beneficiary with special needs but the trustee’s job must be done flawlessly because mistakes could result in the loss of benefits for the person with disabilities.

In this episode we learn how to choose and train the appointed trustee. The show covers 4 qualities a trustee must have, why we should rethink the role of siblings, potential models that can be utilized, and a reason why a special needs trust may not be the best option for some adults with disabilities.

Stephen W. Dale received his JD from Armstrong Law School and his LL.M. in Taxation from Golden Gate University in 2001. The Dale Law Firm was established in 1992 in order to provide quality estate planning to clients by working cooperatively with the clients’ tax, financial and insurance professionals.

Mr. Dale is disability rights advocate whose interest in the disability community began at an early age. He comes from a family of institutional workers that served in California’s State Hospitals and Developmental Centers for over 3 generations. Stephen worked for 17 years as a psychiatric technician in a variety of institutions in California, and later became an intern at the Disability Rights Education and Defense Fund (DREDF) working on disability access cases before starting his own practice focused on drafting and administering special needs trusts.

He serves on the boards of the Arc of California and the Contra Costa County Developmental Disabilities Counsel. He spends much of his time attending disability rights activities, including legislative hearings and serving on boards and committees of disability-rights organizations.

He is also the trustee of the Golden State Pooled Trust which serves beneficiaries in California. Part of his duties is to oversee a series of MCLE programs accredited by the California State Bar, which provides education to attorneys and trustees on a wide variety of disability related subjects focused on quality of life for persons with disabilities.

He is the recipient of the 2010 Theresa Foundation Award and the 2007 NAELA Powley Award. Additionally, Mr. Dale is a long-standing member of the Special Needs Alliance, a national, not for profit organization of attorneys dedicated to the practice of disability and public benefits law.

Related or Mentioned Episodes:

• Safety Series - Episodes 36 - 47
• Legal Rights After the Age of 18 - Episode 30
• Financial Planning Series - Episodes 101 - 113

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