The Spina Bifida Association (SBA) is proud to have launched a new initiative aimed at expanding access to care and minimizing health disparities for adults with Spina Bifida. SBA’s partnership with Project ECHO (Extension for Community Healthcare Outcomes) creates a tele-mentoring setting to facilitate case-based learning and real-time access to subject matter experts. Spina Bifida Adult Care ECHO participants will not only gain knowledge but establish a professional network for continued support, learning, and the exchange of ideas. The Spina Bifida Adult Care ECHO is part of SBA’s larger initiative to connect, teach, and mentor healthcare professionals to improve care for adults with Spina Bifida.
The Centers for Disease Control and Prevention (CDC) estimates that each year 1 in 2,758 babies, or 1,500 babies, are born with Spina Bifida. As a result of research, new treatments, surgeries, and federal policies requiring that every child, including those with disabilities, has access to quality care, 60% of the estimated 166,000 people living with Spina Bifida are adults. However, healthcare resources continue to be focused primarily on children. Adults living with Spina Bifida have limited access to quality, specialty care resulting in poorer health and quality of life, inappropriate use of emergency departments, and life-threatening complications.
The Spina Bifida Association is working to change this. Using the ECHO (Extension for Community Healthcare Outcomes) model, healthcare providers from across the country will learn from top Spina Bifida specialists. As more healthcare professionals learn new skills and competencies related to the care of adults with Spina Bifida, access to quality care will expand. Adults with Spina Bifida will receive treatment close to home, from their trusted provider, much more quickly, conveniently, and less expensively than traveling for care.
Participation in the inaugural Spina Bifida Adult Care Echo is complimentary. “We believe this initiative will not only distribute knowledge and best practices, but it will also spur impactful discussion and help pave the way for real change,” said Sara Struwe, President & CEO of the Spina Bifida Association. “This is one way we can help address the very real and dangerous adult care crisis being experienced by adults living with Spina Bifida.”Click to download the Spina Bifida Adult Care flyer.