In the intricate landscape of dysphagia management, Dysphagia Outreach Project plays a crucial role in empowering patients facing swallowing disorders and pediatric feeding disorder (PFD) as well as supporting Speech-Language Pathologists (SLPs) by providing their patients with a resource that can change the trajectory of their treatment. This 501(c)(3) non-profit organization is committed to providing free essential products and patient-centric educational materials to low-income individuals with dysphagia or PFD. In this blog post, we’ll delve into the core initiatives of Dysphagia Outreach Project, highlighting their valuable contributions to patient care.
How did Dysphagia Outreach Project get started?
Dysphagia Outreach Project is the brainchild of Hillary Cooper. While running her private practice from 2016-2018, Hillary noticed that a lot of her home-bound patients struggled with accessing dysphagia supplies due to financial reasons. She began carrying around thickeners, blenders, and adaptive equipment in her car and dispensed them to her patients as needed. Because this became such a common occurrence, she wondered if these patients could access their supplies somewhere else. She searched high and low, reaching out to various traditional food banks and existing nonprofit organizations, but none could assist with this problem. In early 2019, Hillary spoke aloud about her idea at a leadership retreat, and Dysphagia Outreach Project quickly became a reality.
What does Dysphagia Outreach Project do?
The mission of Dysphagia Outreach Project is to provide tangible assistance to low-income individuals with dysphagia and PFD across the lifespan. At the forefront of Dysphagia Outreach Project’s mission is providing essential resources such as thickeners, adaptive feeding instruments, pre-modified foods and beverages, and food preparation equipment to qualified recipients. For some individuals managing dysphagia or PFD, these products are instrumental in optimizing therapeutic interventions, facilitating a safer swallowing experience, improving health outcomes, and reducing the financial impact of dysphagia or PFD.
Addressing Access Disparities:
Dysphagia Outreach Project is committed to bridging the gaps in access to essential dysphagia and PFD management tools that often occur due to financial constraints and insurance limitations. Medicaid covers thickeners in 13 states, private insurance rarely covers thickeners, and Medicare does NOT cover them, which makes the economic impact of dysphagia and PFD quite severe at times, depending on the product the recipient needs.
For low-income families supporting individuals with dysphagia or PFD, this severe financial burden may result in rationing of thickener (decreasing its effectiveness), use of questionable thickeners such as potato flakes or cooking cornstarch, and a reduced ability for families to obtain specialty feeding equipment such as Provale cups or Dr. Brown’s bottles. When dysphagia is poorly managed, some of these patients end up being hospitalized or sick regularly. Dysphagia Outreach Project recipients can receive comprehensive care without compromise by ensuring access to the supplies they need.
What Supplies Does Dysphagia Outreach Project Provide for Qualified Recipients?
- Food/Beverage Thickeners
- SimplyThick EasyMix
- Gelmix
- Purathick
- Clear DysphagiaAide
- Nestle Resource ThickenUp Clear
- Hormel Thick&Easy Clear
- (Note: Dysphagia Outreach Project does not provide cornstarch or modified food starch-based thickeners unless by specific request)
- Therapy Supplies
- EMST150 & EMST75
- Orastretch
- Ark Z-vibe
- Chewy Tubes
- Ark lip blocks
- Specialty items with administrative approval
- Food Preparation Equipment
- Blenders
- Food Processors
- Milk Frothers
- Shaker bottles
- IDDSI Test kits
- Specialty items with administrative approval
- Pre-Modified Foods (when available)
- Hormel Thick & Easy Pureed Meals
- Hormel Thick & Easy Pre-thickened beverages
- Specialty items with administrative approval
- Adaptive Feeding Equipment
- Dr. Brown’s bottles
- Provale Cups
- Maroon spoons (large and small)
- EZPZ plates and utensils
- Nosey cups (1oz, 2oz, & 6oz)
- Honey Bear Cups
- Ark “Sip” cups
- Specialty items with administrative approval
- Oral Care
- Adult and pediatric toothbrushes
- Pediatric fluoride-free toothpaste
- Adult toothpaste
- Suction toothbrushes
Although we currently do not offer the above items, with enough financial resources or corporate partners, we may be able to include coverage for some of these at a future date.
Empowering Patients with Knowledge:
In addition to tangible tools, Dysphagia Outreach Project has begun producing informative and patient-friendly educational materials in addition to tangible tools. These resources empower individuals facing dysphagia with insights into their condition, enhancing their ability to participate in their care journey actively. While these handouts are provided to all recipients free of charge, Dysphagia Outreach Project also offers them in their SHOP for a small donation. To view the Dysphagia Outreach Project resource library, visit www.dysphagiaoutreach.org/shop.
Qualifying For Assistance:
Dysphagia Outreach Project has done its best to make the application process as accessible and simple as possible. They’ve created a free handout (https://www.dysphagiaoutreach.org/shop/p/how-to-apply-for-assistance) to assist potential recipients with gathering the required information to apply. Applications can be submitted at www.dysphagiafoodbank.org/apply and can be quickly completed on a smartphone. For application assistance in languages other than English, please contact team@dysphagiaoutreach.org.
Donate to Make a Positive Change:
Since 2020, Dysphagia Outreach Project has sent recipients over 800 supply shipments with a combined value of over $120,000.00. Each shipment has an average value of about $150.00 and costs about $13.00 to ship to the recipient. The recipient caseload has grown approximately 50% year over year since the inception of the food bank in early 2020.
Dysphagia Outreach Project is 100% volunteer-run and depends on donations from corporate partners and people like YOU to make our mission a reality. By supporting Dysphagia Outreach Project, you contribute to a network that prioritizes the needs of patients in the dysphagia management landscape. Donations enable the organization to continue providing essential tools and educational resources, ultimately benefiting those managing dysphagia.
To financially contribute to the cause, simply text “DYSPHAGIAOUTREACH” to 44321 or visit our SHOP at www.dysphagiaoutreach.org/shop. For volunteer position inquiries, please email team@dysphagiaoutreach.org.
Conclusion
Dysphagia Outreach Project stands as a collaborative force, working to empower patients facing dysphagia and PFD and supporting their journey to improved well-being. Your support, whether through donations or active engagement, amplifies the impact of this organization, ensuring that individuals have the tools and knowledge needed to navigate and manage their dysphagia or PFD effectively. On behalf of those for whom your donations mean the world, we thank you.
Disclaimer
All proceeds from donations go to Dysphagia Outreach Project. Dysphagia Cafe does not and has not received any compensation for this post.
