I am excited to announce that today I joined the Amputee Coalition team as the new Chief Programs Officer. I cannot imagine an endeavor more aligned with my passions and skillset than this role, at this organization, in service to the limb loss and limb difference community.
My father, a semi-retired prosthetist of 43 years, exposed me to this community at birth. I’ve never known a world without knowing individuals living with limb loss and limb difference. Through my personal and professional experiences I have come to understand many of the challenges facing the limb loss and limb difference community. But perhaps more importantly, I am eager to learn all that I do NOT know in the pursuit of service to this organization and the community it represents.
I have been volunteering with the Amputee Coalition and my local support group for the past 15 years. I attended my first Amputee Coalition conference in Atlanta in 2008 with a group from North Carolina and one of my best friends and former member of the community, David Ostiguy It was at that conference that he discovered a new connection with his community and a new opportunity to shine his incredible light. David has since passed away, having lost his battle to osteosarcoma, the culprit and cause of his multiple amputations over a seven-year cancer journey.
Starting way back with my undergraduate documentary work on body image, experience after experience brought me back to this community. When I started becoming more involved in the management of my family’s prosthetics practice, I had the opportunity to reimagine what a more patient-centric approach to our business could look like and went on to focus my master’s thesis work on the development of what the Amputee Coalition later adopted as its platform for state-level coverage initiatives, InsuranceFairness.org.
It’s been the fulfillment and joy that I have felt through my work over the past six years in service to the O&P business community at the American Orthotic and Prosthetic Association (AOPA), including oversight of advocacy, research, and strategic alliances, management of the Medical Advisory Board, and fervent dedication to lobbying members of Congress for better coverage policies, that have continuously reminded me that I am on the right path.
Now, I am excited to dedicate this next chapter of my career to the Amputee Coalition and the millions of individuals living with limb loss and limb difference that it serves.
The MS Health Law and Strategy program is designed for mid- or senior-career professionals to develop strategy and drive innovation in health. Describe how the MSHLS will contribute to your career objectives. How do you expect this joint degree program to benefit you on a personal and professional level? (500 works max)
As the Director of Health Policy and Strategic Alliances and the in-house lobbyist at the American Orthotic and Prosthetic Association (AOPA), I currently oversee both the advocacy and research portfolios for the organization. I helped design the department I now run under the guiding principle that our policy positions must be supported by the evidence base. It has been my experience that our current healthcare system imposes unnecessary barriers to entry for healthcare technology and arbitrary access challenges for the patients that could most benefit from those advancements.
Since the start of my “official” career in this field in 2008, I’ve witnessed a massive transformation, both for the clinicians delivering healthcare services to patients living with limb loss/difference or limb impairment and the manufacturers of the prosthetic and orthotic devices delivered by those healthcare providers.
I say “official” because I am a second-generation professional working in the Orthotics and Prosthetics field and have been immersed in it all of my life. My father has been a certified prosthetist since before I was born, and I remember fondly the days when attendance at the annual society conferences marked the beginning of our family vacations. In fact, my father attended Prosthetics school at NYU in the early 80s.
Over his 42 years as a prosthetist, he’s seen, and shared with me, exactly how innovation can transform lives. His very first patient wore a wooden prosthetic socket, and he now provides care to patients who have undergone osseointegration surgery and no longer need a traditional socket to successfully ambulate on their prosthetic legs.
Though I am not a clinician providing care to patients, I have built a role for myself in the orthotics and prosthetics field, a role that utilizes the best of my talents and allows me to live a mission-driven, motivated existence with a passion for my purpose. I see the MSHLS program as an opportunity to learn and grow so I can continue to serve this profession to the best of my ability.
What interests me most about this program is the positioning of innovation within the framework of healthcare law and policy fundamentals. I haven’t see any other program in the US that underscores that connection quite like the curriculum offered through this MSHLS. I believe I am the type of candidate that will benefit, specifically, from that balance.
My chosen field sits at the intersection of art and science; it is niche and complex. These factors make it, and the patients it serves, particularly vulnerable to a healthcare system that focuses on service in terms of units rather than value. I am looking forward to gaining new competencies and applying the concepts offered through this program toward efforts to address the challenges facing the orthotics and prosthetics field and the patients it serves now and in the future.
Describe a significant leadership challenge in your life, possibly even a failure. What did you learn and how did this experience shape your professional aspirations?
A significant leadership challenge in my career, thus far, occurred following the acquisition of our family’s prosthetic and orthotic practice, Beacon P&O, in 2015. When we began the process, I was directing our company’s marketing efforts and developing a program to address the access challenges that our patients were facing as a result of inadequate insurance coverage. I had just finished my graduate studies at the UNC Chapel Hill’s School of Journalism and Media and was completing my thesis work on mobilizing patient populations to advocate through online communications platforms. During the program, I realized that my future was in advocacy work, not our family practice.
Over the following year, I assisted my father in every aspect of the due diligence process and facilitated the collaboration necessary to bring us to an offer we were happy to accept. It was the most immersive version of business education possible, with real-world benefits and consequences in its resolution.
Following the acquisition, I was offered the director of operations position for the five-facility organization once owned by my family. Though it had been my intention to leave the company, I accepted the new challenge as another growth opportunity.
After a few months, I realized that the transition was taking a toll on my relationship with my father. We had always met in the middle regarding aspects of our family business; he made decisions about clinical matters and I helped navigate our operational decisions. In this new environment, the line where we used to meet no longer existed. As an example, part of my newly assumed responsibility involved terminating employment of a clinician who had been with the company, and whom I had known, since I was in high school. I found myself entirely lacking the ability to lead effectively through this challenge. The work had grown to be too personal, and I was too emotionally invested.
At this same time, I was receiving recognition for my volunteer work as a Board member for the National Association for the Advancement of Orthotics and Prosthetics (NAAOP), on the Mobility Saves committee for AOPA, as the director of government affairs for the North Carolina Orthotic and Prosthetic Trade Association (NCOPTA), and working with our local amputee support group as a healthcare advocate.
These volunteer roles served to define my strengths as I built my professional identity beyond that of “Eddie White’s daughter.” After ten months under BCP Group ownership, I gave a lengthy notice and began the process of hiring my replacement. I took a leap into the unknown, with no job lined up, but with confidence that I had something to offer the orthotics and prosthetics profession. Shortly after, I landed my dream job at AOPA.
Now, after six years at AOPA, as I explore my next transformation, I find myself poised to take a leap, again. While I remain uncertain as to where I will land, I am confident that I will arrive in that new place a better version of myself.
This post is a direct copy of a paper published for Dr. Vaughn Upshaw’s Principles of Public Health Leadership (PUBH 791)at UNC Gillings School of Global Public Health. I am endlessly grateful for the opportunity to grow as a leader through UNC’s Public Health Leadership program.
As I take stock in how far I’ve come in my career, I would be remiss not to acknowledge the attributes that I believe got me this far. My passion and commitment to cause are the first characteristics that come to mind. Many still compliment me on these attributes today.
I am almost certain that it was solely my enthusiasm for the orthotic and prosthetic profession and the patients we serve that opened so many doors for me over the years, but once those doors were open, I was motivated to take advantage of the opportunities that I was offered.
I also had the good fortune to learn from and be guided by several accomplished mentors who were transformative leaders in the profession, mentors that I continue to learn from today. They created opportunities within their organizations and invited me to tables where other leaders were gathered that I likely would not have not had access to otherwise. I always showed up when invited, and sometimes even when I was not. Peter Thomas, general counsel for the O&P Alliance and a long-time mentor, recently commended me for making the most of the opportunities that have come my way.
I believe in myself and my ability to make a positive impact in this world and I am passionate about working towards goals that are bigger than myself. However, Koh and Jacobson emphasize the need for public health leaders to move beyond passion and to develop skills that are more expansive than those required to run a single organization. In this paper, I will outline my leadership philosophy and goals, and my commitment to personal growth in the pursuit of becoming a more effective public health leader.
Leadership philosophy, guiding principles, and commitments
I strive to be an adaptive and dynamic leader who facilitates the engagement of an inclusive and diverse community of stakeholders to build commitment to and support for the mission of improving patient access to orthotic and prosthetic care. I strive to lead with integrity, to communicate openly and honestly, and to accept responsibility for my actions as I work to develop health policies that reflect the needs of individuals living with limb loss, limb difference, and limb impairment, and the orthotic and prosthetic clinicians providing their care.
As a public health leader, I believe in the guiding principle that health is a human right. I believe that healthcare inequities and health disparities plague members of Black, Brown, and rural communities, and I am committed to working on projects and establishing programs through my organization, and other organizations where I have influence, that will mitigate the harmful practices that have led to and continue to create these inequities.
I am committed to using ethical analysis to determine what actions should be taken and why they should be taken when proposing policies that will impact the members of my organization and/or the patients they serve. Furthermore, I will challenge myself to look beyond my organization and our patient populations to understand the broader societal impacts of actions proposed and taken to mitigate any potentially negative impacts of these decisions.
Finally, I am committed to growing the pipeline of public health leaders in the orthotic and prosthetic profession. The lack of existing, credentialed public health leaders in the field poses challenges to building a shared vision that is guided by public health principles. I believe it is important to increase awareness of public health practice and engage orthotic and prosthetic professionals in opportunities that will foster their growth and create a sustainable pipeline for future public health leaders in this field.
A note about personal integrity and ethical leadership
In my current role as the director of health policy for an association that represents businesses, it could be quite popular for me to take a position that empowers companies over patients, especially when that power dynamic isn’t clearly on display. Companies are, ultimately, the entities that pay the membership dues from which my salary is allocated. To clarify, I have never been put in a situation where I’ve been pressured to act in the best interest of a company over the patients they/we serve, but I recognize the possibility and the importance of using an ethical framework for decision making. The responsibility to make health policy decisions goes far beyond the direct requests and needs of our members; we are working to establish policies that are supported by evidence, both social and scientific, to improve quality of life for our patients.
At times, it can be challenging to get past all the vision statements and espoused idealism of the companies to dig into the potential negative impacts decisions. Policy positions must be assessed critically, to account for the possibility of unintended consequences. While good intentions may be inherent in the policy language that I am responsible for putting forward on behalf of my organization, intention means very little if legislation is passed and rule making results in a negative impact on a member of the community I represent or society at large. Balancing the possibility of unintended consequences with the need to take action is one of the hardest aspects of my job.
Building an inclusive community of diverse stakeholders
The orthotic and prosthetic profession is small and often insular. Recent efforts have been undertaken to expand AOPA’s strategic alliances, to build a more inclusive and diverse group of stakeholders and to promote the healthcare team approach to caring for our patient populations. In addition to expanding my memberships in allied health organizations and volunteering for committees and task forces when possible, AOPA is working to increase the engagement of our volunteer leadership through the engagement of our Medical Advisory Board, which I oversee.
AOPA has also engaged a consultant firm, Calling All Allies, to help the members of our team develop our own leadership practice in diversity, equity and inclusion. This will be instrumental as we continue to work to grow a more racially and ethnically diverse profession and address the health disparities of our Black and Brown patients.
Example: inclusivity and assessing decisions for unintended consequences
Therapy groups bring concerns to Congress regarding the American Orthotic and Prosthetic Associations (AOPA) keystone legislation
Earlier this summer, the American Occupational Therapy Association (AOTA), the American Physical Therapy Association (APTA) and the American Society of Hand Therapists (ASHT) brought concerns about the Medicare Orthotic and Prosthetic Patient-Centered Care Act (HR 1990/S 2556) to the Congressional sponsors of the legislation. HR 1990/S 2556 is the American Orthotic and Prosthetic Association’s keystone legislation and seeks to distinguish the healthcare services required by individuals living with limb loss, limb difference and limb impairment from the commodity-based nature of durable medical equipment provision. The therapists’ concerns focused on the fear of potential unintended consequences associated with the implementation of the law through the regulatory process, specifically that Medicare would regulate the law in a way that would challenge the ability of physical therapists, occupational therapists, and hand therapists to bill for orthotic and prosthetic services.
Despite a call to arms and defensive posturing from some of our organization’s external advisors, I believed it was most important to bring all the stakeholders to the table to determine what could be done collectively to mitigate any negative impacts to therapists and their ability to care for their patients.
Growing leaders in the orthotics and prosthetics profession
Currently, there are not many resources for leadership development within the orthotic and prosthetic profession. There are even less resources for developing volunteer leadership within the associations and organizations representing the field and its patient populations.
In the article titled, “Growing leaders in a professional membership organization,” M.E. Shekleton writes about the work of American Association of Nurse Anesthetists (AANA) to establish pathways for leadership development within the national organization and state-based chapters. The article underscores the importance of committing resources and developing infrastructure that supports leadership development activities, in order to grow leaders in the profession.
The lack of formal pathways for leadership development makes the task of growing leaders difficult within AOPA’s volunteer structure as well as the orthotic and prosthetic profession at large, but these efforts are vital to support and implement the change needed to serve the mission of increasing access to care for orthotic and prosthetic patients.
As a public health leader, I am committed to advocating for the resources necessary to grow public health leadership within my profession. I am committed to helping build and support the programs designed to grow leaders and to teaching and mentoring the next generation of public health leaders that will carry the vision of access to ability forward.
Example: Commitment to growing leaders
The gift of mentoring, Nicole Ver Kuilen—the future of advocacy for ability
It has been the honor of my life to mentor Nicole Ver Kuilen. At the age of 10, Nicole lost her leg to osteosarcoma. At the time, all she wanted to do was play with her friends, like most kids do. She wanted to run on the playground and play in the water, but her insurance company would only cover one prosthetic limb, and it was the most basic, lowest cost model available. It could not be submerged in water and was not safe for her to run on, but the insurance company said that those activities were not medically necessary and therefore she did not “need” a different prosthesis.
Sixteen years later, during her first trip to Capitol Hill to advocate for access to care, Nicole described the true culprit of her disability. She said it was not the fact that she had lost her limb to cancer that made her disabled, but the denial of access to appropriate technology and prosthetic care that kept her from having the ability to live an active life. I recorded a call to action from Nicole to the community that day, and have remained committed to her growth and advancement as a leader ever since. I currently serve on the Board of Directors for Forrest Stump, Nicole’s nonprofit advocacy organization, and continue to provide support and guidance as a mentor, but if I am being honest, in some scenarios, she is the leader and I am the follower.
Just last week, we hosted Nicole as part of the keynote for AOPA’s National Assembly in Boston. She took the stage to share her story and make the case for the importance of advocacy for patient access to ability. She introduced and interviewed former Congressman, Erik Paulson as part of the program. Nicole has, at every turn, reinforced my personal commitment to advocating for policies that recognize the medical necessity of physical activity and support access to activity-specific prostheses. She is my inspiration.
Developing my leadership skills through the mentorship of others
As I described in the previous paragraphs and outlined in the example above, I am personally committed to mentoring as part of an effort to grow leaders in the orthotics and prosthetics profession. I also believe that mentoring others will help me develop my own leadership skills and will challenge me to continue to evolve as a leader by helping me stay informed about the issues facing professionals in the field that are at a different point in their careers. It will also help me continue to improve my communication and teaching skills.
To hold myself accountable for this personal growth goal, I will commit to seeking and engaging in teaching and training opportunities that connect me with individuals that are in early stages in their orthotic and prosthetic careers. Specifically, I will reach out to the educators in the orthotic and prosthetic MS programs to volunteer to guest lecture and serve as a resource for students. When appropriate, and within reason, I will take on mentoring responsibilities for individuals that express engaged interest and a desire to work more closely with me directly.
Becoming a more adaptive, and therefore effective, leader
One thing I could do to be a better leader is to learn to how to switch between leadership styles based on situations and the needs of the individual or community with which I am engaged. I have found that I am most comfortable when I am, “being myself,” but much of the reading assigned in this class discusses the value of being an adaptive leader, one that can navigate situations employee necessary skills to engage particular individuals or groups.
This skill of switching between leadership styles is one that I have observed in other leaders, specifically my mentors Michael Oros and Dave McGill. While I may exhibit this ability in limited situations, I am now more aware of the potential friction that my constant enthusiasm for and espousing of “the dream” may create for individuals who are not motivated by visionary leadership.
My plan to grow my skills in this area and become a more adaptive leader is to develop an inventory of my leadership experiences, noting the individuals and communities for which I am responsible for leading, and documenting an assessment of my effectiveness in each particular situation. Specifically, I will document if the leadership style used was effective and if I think a different type of leadership style would have been more effective. My hope is that with practice, the code switching will become more natural and authentic.
It is my hope that I will always strive to grow, that I will continue to remain committed to being a life-long learner and challenging myself to adapt as a leader and follower. I hope to carry forward my father’s legacy in service to individuals who have lost limbs, experienced limb impairment or were born with limb difference. Most of all, I hope my work makes a difference.
This week I will participate in a ceremony as one of four nominees for the O&P Woman of the Year Award. I am honored to be in the company of the other women who were nominated, and I am grateful to the individuals who believe in my work and service to the O&P profession enough to have nominated me. While this accolade feels premature at this point in my career, I still have so much to do, so much personal growth to undergo, so many goals to achieve and challenges to overcome, I am proud of the accomplishment nonetheless. I am also hopeful that through this recognition, I will be able to use the platform to elevate my advocacy work and inspire others to join the cause of increasing access to ability for all.