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Life in the Fast Lane of Washington, DC: Lessons and Experiences from the 2019 NAAOP Fellows

By Alicia Carver and Susannah Engdahl, PhD

This past summer, the NAAOP fellowship program doubled in size to host two fellows, due largely to the generosity of NAAOP donors. We were both very excited to participate this year, especially with the opportunity to work as a team and learn from each other’s experiences and skill sets. Between Alicia’s prior experience in advocacy and Susannah’s PhD in Biomedical Engineering, we formed a balanced and dynamic team. While the ten-week fellowship flew by in no time, we received an in-depth education in health and disability policy and advocacy, and learned more about continuing on this path in the future.

This summary is intended to provide donors with a first-hand account of our fellowship experience in hopes this vital program will continue to received necessary financial support.

Our Washington-based fellowship policy and advocacy experience included visits with all of the O&P Alliance organizations as well as attendance at the Amputee Coalition Annual Conference.  We embarked on a series of field trips throughout the country to gain exposure to the clinical, business, and state-based advocacy aspects of the O&P profession.  The fellowship gave us a comprehensive understanding of the vital roles and responsibilities that all O&P stakeholders play to improve the lives of people with limb loss and limb difference.

The bulk of our summer was spent learning about O&P policy in the context of broader healthcare and disability issues.  We spent days advocating on Capitol Hill on the Medicare Orthotic and Prosthetic Patient-Centered Care Act, which was being prepared for introduction in the 106th Congress.  These NAAOP-led meetings contributed to the legislative efforts of AOPA, which is spearheading the charge for this legislation, as well as the broader O&P Alliance. We were able to meet with 36 congressional offices and enjoyed an overwhelmingly positive reception. We both enjoyed sharing our personal stories in these meetings, since it helped to humanize the lives of orthotic and prosthetic users. (We had lots of chances to roll up pant legs/shirt sleeves and show off our prostheses!)

We also attended a meeting with key leaders at the Centers for Medicare and Medicaid Services (CMS) to discuss the definition of “orthotics” and argued that newly designed “powered” orthoses should be considered for coverage under the definition of an orthosis, despite a troubling trend at CMS to consider these new technologies as durable medical equipment (DME).  Finally, we met with a senior leader at the National Institutes of Health (NIH) who oversees the O&P research program at that federal agency.  We were inspired by the interest and focus NIH demonstrates toward the scientific advancement of orthotics and prosthetics.

Soon after the fellowship began, we met Peter Thomas, general counsel for the NAAOP, and George Breece, NAAOP Executive Director.  Their mentorship was invaluable to our fellowship experience.  We travelled to Michigan for our first “field trip” of the summer. We had the opportunity to shadow a number of fine practitioners throughout the summer, including at Stokosa Prosthetic Clinic and met members of the Michigan Legislature at the State Capitol building.

At the clinic, we were exposed to the clinical practice of prosthetics and learned about prosthetic billing as well as some of the procedures that the team follows when submitting insurance claims and appealing coverage denials. As individuals with limb loss ourselves, we both have patient experience with coverage denials and it was interesting to learn about coverage denials, appeals and billing issues from the provider perspective. Seeing the behind-the-scenes clinical and technical practice of prosthetics gave us a valuable perspective on O&P patient care.  Our time at the Michigan State Capitol building in Lansing provided a primer on state-based lobbying and illustrated the important link between clinical O&P practice and policy development that impacts O&P practice.

We spent a day with the Board of Certification/Accreditation (BOC) at its headquarters in Owings Mills, Maryland and were warmly welcomed by the entire BOC staff. We learned about the roles each staff member plays within the organization and the team mentality they all embrace. We were led through the process of Facility Accreditation and the important factors in that process.  We were inspired by the profession’s commitment to quality and how the accreditation organizations help the O&P community work together to achieve a unified goal.

We visited the American Academy of Orthotists and Prosthetists (AAOP) and sat in on a weekly staff meeting with their executive team.  We learned how the Academy compiles and maintains educational and research resources, such as the Online Learning Center, the Exam Preparation Seminars, and the Journal of Prosthetics & Orthotics, all of which enable members to stay up to date with new ways to meet patient needs.  As the O&P organization representing individual O&P practitioners, the Academy’s role cannot be overstated.

We then flew to Florida to visit the Gainesville Prosthetics and Orthotics clinic and the OPIE organization.  We learned the history of OPIE and spent the day with members of the OPIE team learning about electronic medical records in the O&P profession. In particular, we heard about the software development cycle, consumer experiences with software implementation, the knowledge-centered customer support system, and the OPIE Choice Network.

We also spent two days touring the Hanger Clinic in Laurel, Maryland and at the National Rehabilitation Hospital in Washington, D.C.  We were able to observe how the prosthetist used patient-reported outcome measures to assess the patient’s current functional status and evaluated the socket fit to determine if a new prosthesis was needed. At the National Rehabilitation Hospital, we saw firsthand how an O&P clinic operates when embedded in a rehabilitation hospital. After sitting-in on a patient visit and observing how modifications are made to a test socket, we toured the facility’s two therapy gyms and learned how the members of the therapy team coordinate with each other to maximize their patients’ functional outcomes.

We also traveled to Iowa to meet with the Orthotic Prosthetic Group of America (OPGA).  We learned how OPGA supports independent O&P practitioners by providing insurance, business management and marketing services, and by offering access to discounted O&P components, materials, and supplies from manufacturers and suppliers.  We also learned more about advocacy from several Iowa state legislators, including a former State Senator and former Iowa House Speaker.

We then met with the American Board for Certification in Orthotics, Prosthetics, and Pedorthics (ABC). They outlined the process for certifying practitioners and accrediting O&P facilities, as well as the role that ABC plays in overseeing these processes. We coupled this trip with a visit to the National Commission on Orthotic and Prosthetic Education (NCOPE), which taught us the role NCOPE currently plays in accrediting orthotic and prosthetic education programs, and in elevating the educational standards for practitioners in training.

We rounded out this trip by visiting the American Orthotic and Prosthetic Association (AOPA) which provided us with in-depth knowledge about AOPA’s collaborative efforts to advance the orthotic and prosthetic profession on behalf of O&P practices, manufacturers and suppliers.  Getting a better understanding of AOPA’s extensive government relations efforts, including the activities of their Political Action Committee, was extremely informative from a policy development standpoint.

Finally, we attended the Amputee Coalition Annual Conference in San Antonio, Texas.  We enjoyed a front row seat learning about new O&P technology and we both participated in several research projects in between sessions. We especially enjoyed the extensive networking opportunities to meet other amputees like ourselves.  The Amputee Coalition was particularly generous in affording us an opportunity to participate in multiple sessions as speakers, participants, and as consumer stakeholders.

As advocates, sharing our stories is one of the most powerful ways we can engage legislators and policymakers at the state and federal levels.  In these meetings, we as prosthetic and orthotic users turn from statistics and people in photographs to people with real needs, underscoring the importance of our message.  Being able to be mobile and live the life we want is a testament to the quality of care that orthotists and prosthetists provide. Our collective voice is the tool that will help us enact the legislation and regulation we need to thrive.

Reflections from Alicia

The fellowship experience has fueled my passion for advocacy and allowed me to look toward avenues that I might never have considered otherwise. I want to work hard and become a leader of the next generation. I have learned how critically important clinical research is, and about the gaps that exist in the O&P field.  We need more research to improve the evidence base of orthotics and prosthetics.  We need more data to help support legislation for the betterment of the entire O&P community. We also need more advocates on Capitol Hill who use orthoses and prostheses who “walk the walk” and serve as a living example of the value of O&P care.

We live using prosthetics and orthotics on a daily basis; our stories are powerful tools in this fight. This fellowship was a once in a lifetime opportunity to immerse myself into Washington D.C. I truly enjoyed the work I did this summer and I wholeheartedly urge others to apply for this opportunity if they have an interest in health policy and advocacy. I sincerely thank all those who contributed financially to make this fellowship a reality.  This past summer has made clear the path I wish to follow: adding to the army of advocates and future leaders in the O&P community.

Reflections from Susannah

This summer has been a fantastic experience and I’m very grateful that I had the chance to participate in the NAAOP Fellowship. I enjoyed being able to talk with so many people who work in diverse areas of the O&P community, in particular, Dr. Alison Cernich, the Director of the National Center for Medical Rehabilitation Research (NCMRR) at NIH. It was helpful to see how all of the policy areas we learned of complement each other—everyone has a different role to play, but their work ultimately comes together to advance patient care. This experience has energized me to look for ways to combine my previous skills as a researcher with my new skills as an advocate when I take the next steps forward in my career. Thank you so much to everyone who made this summer possible. I truly appreciate it!

Thank you to NAAOP, the organizations that hosted us, and, again, to those who supported the fellowship program through financial and in-kind contributions.

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