Episode 61: The Dark Side of Dysphagia: Why We Need the Dysphagia Outreach Project with Hillary Cooper, MA, CCC-SLP
If you’ve worked with patients with dysphagia, you’ve probably experienced that feeling of trying to treat a patient who cannot afford dysphagia supplies. Since insurance doesn’t often cover dysphagia supplies such as thickener, adaptive feeding equipment, or therapy tools such as RMST devices, many individuals with dysphagia just go without. In this episode, we will talk to Hillary Cooper about how she had had enough of the madness, decided to take matters into her own hands, and created The Dysphagia Outreach Project.
topics covered:
The impact of managing dysphagia for the community dweller
Limitations of insurance coverage for dysphagia supplies
Encouraging patients and care partners to become advocates.
Dysphagia materials:
the difference between cornstarch thickener and xanthan gum thickener
gel thickener, pre-thickened liquids
nosey cups, 360 rim cups, safe straw, provale cups, adaptive spoons and plates, and blenders.
RMT devices such as the EMST-150
Advocating for at-risk populations: the nuts and bolts of being an effective advocate.
Resources to dig deeper:
Journal Articles:
Langmore's predictors of aspiration pneumonia paper (free download woot! woot!).
Langmore, S., Skarupski, K., Park, P. et al. Predictors of Aspiration Pneumonia in Nursing Home Residents . Dysphagia 17, 298–307 (2002) doi:10.1007/s00455-002-0072-5
The article discussing effects of aspiration of cornstarch thickener versus xanthan gum thickener:
Nativ-Zeltzer, N., Kuhn, M. A., Imai, D. M., Traslavina, R. P., Domer, A. S., Litts, J. K., … Belafsky, P. C. (2018). The effects of aspirated thickened water on survival and pulmonary injury in a rabbit model. Laryngoscope, 128(2), 327–331.
Article talking about increased silent aspiration with thickened liquids, necessitating instrumentation:
Miles, A., McFarlane, M., Scott, S., & Hunting, A. (2018). Cough response to aspiration in thin and thick fluids during FEES in hospitalized patients. INT J LANG COMMUN DISORD, 53(5), 909-918.
*hitting a paywall? Can’t access the research? Try Google Scholar. Click the link in the right hand column for access to the full article, if available.
Additional Resources & Links:
Article regarding Xanthan vs. Starch on Dysphagia Cafe
Dysphagia Outreach Project - learn more on how you can contribute and have an impact!
IDDSI - The International Dysphagia Diet Standardization Initiative - excellent resources available!
www.SLPstuff.com - find some sweet SLP swag, check out this SLP stuff where 100% of profits go to the non-profit!
https://www.northlaswallowsolutions.com/goodies - Hillary’s favorite things.
Thanks for the links, Hillary!!
resources mentioned During the live Q & A
Hillary mentioned this small business run by 2 sisters (one is an SLP!) who provide altered diet food delivery! Here is their facebook page: Coopers on Wheels
And Leigh Ann mentioned this cookbook filled with options for people on altered diets: Beyond the Blender by Simone Howells and Griffith University Master of Speech Pathology Students. Currently it is in metric units (challenging for some of our patients to convert, but they are coming out with a second edition in the future that might include imperial measurements (AKA how we do things in the US)).
And here is a (FREE) dysphagia cookbook made by students at NYU!
Hillary Cooper is a self-proclaimed “dysphagia nerd” who is passionate about sharing her knowledge and passion about dysphagia with other SLPs and our interdisciplinary colleagues. Hillary has extensive experience with pediatrics and adults in a variety of settings, and has found a love for advocacy. She currently owns North Louisiana Swallow Solutions, a mobile FEES company as well as SLPstuff.com, an SLP-themed gift store. Her love of advocating led her to create The Dysphagia Outreach Project, which aims to provide assistance to individuals touched by dysphagia across the lifespan. Hillary has been the guest of multiple podcasts, presented at multiple state conventions and ASHA, and routinely guest lectures at Universities across Louisiana and Texas.
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