EPISODE · Jun 18, 2026 · 37 MIN
Dysphagia In Developmental Disabilities "They Don't Read the Textbook" with Jen Biener
from Dysphagia Research Bites · host Dysphagia Bites
What does it actually look like to assess swallowing difficulties in an adult who has eaten a certain way their entire life, and whose "textbook" may look nothing like yours? In this episode of Dysphagia Research Bites, Chantelle sits down with Jen Biener, a speech-language pathologist specialising in adults with developmental disabilities, to dig into a Dutch retrospective study on the prevalence and associated factors of swallowing difficulties in adults with intellectual disabilities aged 50 and over — and to unpack what it really means to assess and support this often-overlooked population. In this episode we cover:Why the terminology we use — dysphagia vs. feeding and swallowing difficulties — matters clinically and in research, and why both terms have a place depending on the settingHow to conduct a meaningful mealtime assessment, including the value of observing familiar caregivers feeding the person rather than jumping straight to a formal evaluationWhy mealtime dependency needs to be understood differently in people who have always been dependent for feeding, compared to someone who acquired that dependency after a strokeChoking risk assessment in this population, including the limitations of existing tools and the power of instrumental assessment as a biofeedback toolHow to set people up for success before and during instrumental swallowing studies The importance of clinical language: writing what you observe, not what you assume, and why "did not follow one-step commands" is very different from "cannot follow one-step commands"Assessment tools and approaches Jen recommends, including the Dysphagia Disorder Survey, the Choking Risk Assessment, and the Functional Communication Profile - RevisedWhy there is so little research on adults with intellectual disabilities, and why this population is, in many ways, historically new The publication this episode is based on:Sanders KJV, Elbers RG, Bastiaanse LP, Echteld MA, Evenhuis HM, Festen DAM. Prevalence of swallowing difficulties and associated factors in older people with intellectual disabilities. J Appl Res Intellectual Disability. 2024 May;37(3):e13209. doi: 10.1111/jar.13209. PMID: 38382915: https://pubmed.ncbi.nlm.nih.gov/38382915/ Other resources mentioned in this episode:Dysphagia Disorder Survey (DDS) & Dysphagia Management & Staging Scale: https://sites.google.com/view/dysphagiaorg/the-dysphagia-disorder-surveyChoking Risk Assessment & Pneumonia Risk Assessment: https://pubmed.ncbi.nlm.nih.gov/28822297/Article on mealtime supports for people with ID: https://pubmed.ncbi.nlm.nih.gov/21988217/Functional Communication Profile — Revised: https://www.wpspublish.com/fcp-r-functional-communication-profile-revised For clinical resources and evidence-based dysphagia education beyond the podcast, head to: www.dysphagiabites.com
What this episode covers
What does it actually look like to assess swallowing difficulties in an adult who has eaten a certain way their entire life, and whose "textbook" may look nothing like yours? In this episode of Dysphagia Research Bites, Chantelle sits down with Jen Biener, a speech-language pathologist specialising in adults with developmental disabilities, to dig into a Dutch retrospective study on the prevalence and associated factors of swallowing difficulties in adults with intellectual disabilities aged 50 and over — and to unpack what it really means to assess and support this often-overlooked population. In this episode we cover:Why the terminology we use — dysphagia vs. feeding and swallowing difficulties — matters clinically and in research, and why both terms have a place depending on the settingHow to conduct a meaningful mealtime assessment, including the value of observing familiar caregivers feeding the person rather than jumping straight to a formal evaluationWhy mealtime dependency needs to be understood differently in people who have always been dependent for feeding, compared to someone who acquired that dependency after a strokeChoking risk assessment in this population, including the limitations of existing tools and the power of instrumental assessment as a biofeedback toolHow to set people up for success before and during instrumental swallowing studies The importance of clinical language: writing what you observe, not what you assume, and why "did not follow one-step commands" is very different from "cannot follow one-step commands"Assessment tools and approaches Jen recommends, including the Dysphagia Disorder Survey, the Choking Risk Assessment, and the Functional Communication Profile - RevisedWhy there is so little research on adults with intellectual disabilities, and why this population is, in many ways, historically new The publication this episode is based on:Sanders KJV, Elbers RG, Bastiaanse LP, Echteld MA, Evenhuis HM, Festen DAM. Prevalence of swallowing difficulties and associated factors in older people with intellectual disabilities. J Appl Res Intellectual Disability. 2024 May;37(3):e13209. doi: 10.1111/jar.13209. PMID: 38382915: https://pubmed.ncbi.nlm.nih.gov/38382915/ Other resources mentioned in this episode:Dysphagia Disorder Survey (DDS) & Dysphagia Management & Staging Scale: https://sites.google.com/view/dysphagiaorg/the-dysphagia-disorder-surveyChoking Risk Assessment & Pneumonia Risk Assessment: https://pubmed.ncbi.nlm.nih.gov/28822297/Article on mealtime supports for people with ID: https://pubmed.ncbi.nlm.nih.gov/21988217/Functional Communication Profile — Revised: https://www.wpspublish.com/fcp-r-functional-communication-profile-revised For clinical resources and evidence-based dysphagia education beyond the podcast, head to: www.dysphagiabites.com
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Dysphagia In Developmental Disabilities "They Don't Read the Textbook" with Jen Biener
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