So Every BODY Can Move Keeps Moving Forward

When Nicole Ver Kuilen was ten years old , she had a transtibial amputation on her left leg after being diagnosed with osteosarcoma. The little girl growing up in Minnesota didn’t know that her amputation would eventually set her on a course that would define her life’s work. Fast forward to 2017, after facing years of insurance denials for proper and applicable prosthetic devices, Ver Kuilen quit her job to complete a 1,500-mile ultramarathon and prosthetics awareness campaign she called Forrest Stump. Ver Kuilen completed the trek down the Pacific Coast Highway wearing a prosthesis that was meant only for walking. The journey was meant to call attention to the discriminatory and outdated health insurance policies that restrict physical activity for children and adults with amputations by denying appropriate prosthetic care. “I was compelled to do this from my own personal experience of being denied access since age ten and wanting to raise awareness for our entire community,” Ver Kuilen says. However, it wasn’t until Ver Kuilen moved to Washington DC in 2018 to complete the National Association for the Advancement of Orthotics and Prosthetics (NAAOP) Breece Fellowship that her activism truly began. “It’s where I had the opportunity to learn more about policy and advocacy work in the context of O&P,” she says. After realizing that little was being done on the issue within O&P or in the broader disability and rehabilitation community, Ver Kuilen founded Forrest Stump as a nonprofit advocacy organization with the mission to promote equitable access to physical activity for individuals with disabilities. “I spent the next few years working toward finding a solution to the problem and refining the framing of the issue,” she says. The nonprofit launched a disabilities rights campaign in 2020 on the 30th anniversary of the Americans with Disabilities Act called #WeJustFeltLikeRunning, translating the cause into a policy paper, petition, and a call to action for Congress titled The Rights of Americans With Disabilities to Exercise. [caption id="attachment_264333" align="alignright" width="357"] Nicole Ver Kuilen and Kyle Stepp share a deep commitment to fighting for systemic change in the disability community.[/caption] “Over 630 individuals across the country participated, and we garnered nearly 10,000 signatures on our petition,” Ver Kuilen says. “We then met with over 30 congressional offices to discuss federal policy solutions presented in our policy paper.” While Forrest Stump received incredible support from these offices, she says, tackling this issue from a federal perspective was not only a lofty goal, but the pathway was not particularly clear. As part of the campaign, the American Orthotic and Prosthetic Association (AOPA) accepted a proposal from NAAOP to define physical activity as medically necessary as a policy priority of the O&P profession, says Ver Kuilen, who began working for AOPA in 2022 as its manager of public engagement to start defining this policy priority for O&P. In 2022, roughly one year prior to the launch of AOPA’s legislative efforts, Maine had passed a law requiring health insurance policies regulated by the state to consider the recreational needs of people under 18 when a decision is made about what prostheses will be covered. The law, An Act To Improve Outcomes for Persons with Limb Loss, states that insurance providers must consider “a prosthetic device determined by the enrollee’s provider…to be the most appropriate model that meets the medical needs of the enrollee for recreational purposes, as applicable, to maximize the enrollee’s ability to ambulate, run, bike, and swim, and to maximize upper-limb function.” Jordan Simpson, who has congenital amputations, was the impetus to the Maine law’s development and passage. Her insurance provider denied coverage for a running prosthesis when Simpson was a child saying it was not medically necessary. “[Jordan] cited Forrest Stump in her efforts and our team consulted with her during that time,” Ver Kuilen says. “When I learned of Maine’s [law] passing I knew we had found the solution—to pursue a state-based strategy [rather than the federal one]. I then pitched the campaign concept of So Kids Can Move to NAAOP/AOPA as a pilot campaign for us to start working on this issue and expand on the groundwork Forrest Stump and Jordan had laid.” Four states followed Maine’s footsteps and enacted legislation the following year, while expanding the movement to include all ages. “As we recruited a coalition of over 38 states, we then decided to rebrand to So Every BODY Can Move (SEBCM),” says Ver Kuilen, who became the Amputee Coalition’s director of impact campaigns and SEBCM lead last fall. It Takes a Village The adage “it takes a village” couldn’t be truer in the SEBCM realm, agree the experts interviewed for this article. Nathan Kapa, CP, president, Bremer Prosthetic Design, Michigan, and NAAOP president, has witnessed the initiative’s transformation from an initial idea into the So Kids Can Move campaign and ultimately into the current broader movement. “This evolution has been remarkable, and I have been engaged in supporting its expansion and impact from the very beginning,” he says. For Kapa, movement and exercise have always been central to his personal well-being, physically and psychologically. “As a clinician, I have seen firsthand the detrimental effects when individuals face barriers to movement following limb loss, whether due to financial, systemic, or policy-related obstacles,” says Kapa, who in addition to being a full-time clinician and the owner of multiple prosthetics clinics, has been actively engaged in governmental affairs for most of his career. “When I first learned about SEBCM, I immediately recognized it as a powerful mechanism to channel my passion for movement and my commitment to patient advocacy into something far-reaching.” Teri Kuffel, JD, vice president, Arise O&P, Minnesota, and interim executive director for AOPA, first became involved with the Minnesota Society of Orthotists, Prosthetists & Pedorthists (MSOPP) more than 15 years ago, when the organization introduced the state’s first prosthetic parity bill, which was later changed to the O&P Insurance Fairness Bill. In 2024, MSOPP worked with Minnesota-based nonprofit Wiggle Your Toes and the state’s O&P community to introduce a new version of the legislation, the Minnesota Improved Access to O&P Care Bill, that added showering and bathing devices as well as recreational devices to the insurance fairness mandate. “It was an immediate and obvious decision to jump on the SEBCM bandwagon and continue the work Minnesota had started more than 15 years ago,” Kuffel says. “It is because of the initial success of the SEBCM movement in 2023 that Minnesota decided to introduce its legislation in May 2024, and it passed.” Minnesota’s Improved Access to O&P Care Act took effect in January. “We are now in the implementation stage and working to help educate our extended O&P community about the new coverages available to those with Minnesota-regulated commercial and public insurance plans,” Kuffel says. Angela Montgomery, CPO, owner of Prosthetic & Orthotic Group, Colorado, got involved in advocacy after learning about Forrest Stump through a meeting with Ver Kuilen in 2018 when she participated in one of the University of Colorado’s prosthetics studies. “She inspired me and planted a seed about changing a system instead of just complaining that it doesn’t work,” Montgomery says. “Then in the summer of 2022, I read about Jordan Simpson and again I was inspired by a girl who had actually changed the system.” As a result, Montgomery formed a local coalition and introduced a bill to Colorado legislators in 2022. “My mother was a health and physical education teacher, and my father was an attorney. For as long as I can remember, I was taught the importance of movement and justice from both of them,” says Montgomery, who as a heptathlete found her way into O&P. “Practicing in Boulder over the past 20 years and supporting prosthetic research at [the University of Colorado] has given me so much exposure to running-specific prosthetics and the barriers to accessing these devices. All of these things culminated in my desire to be a part of the change.” Kyle Stepp shares a similar journey with Ver Kuilen, when osteosarcoma was found in his left leg at 14 years old. Initially, Stepp’s surgeons recommended a limb salvage procedure. “This left me with mobility impairments and required me to wear orthotics due to foot drop,” says Stepp, who had his leg amputated in 2020 after a mountain bike accident caused the limb salvage to be irreparable. Stepp’s journey with SEBCM started in 2021 when his prosthetist introduced him to Ver Kuilen. “At the time I was in the middle of a brutal fight with my insurance just to get my first prosthetic knee, endless denials and months of frustration trying to access something as basic as walking,” remembers Stepp, a native of New Mexico. The moment Ver Kuilen and Stepp met there was an “undeniable spark,” says Stepp. “Not just because our personal stories as cancer survivors, athletes, and experiences navigating the healthcare system were similar, but because we both shared a deep commitment to fighting for systemic change in the disability community.” When Stepp got involved with SEBCM, New Mexico did not have any insurance fairness laws in place for O&P care. “We knew this legislation had to be comprehensive,” he says. With a state that only has a 60-day legislative session, Stepp and his coalition went all in—knocking on every legislator’s door, collaborating with senators and representatives on both sides of the aisle, meeting with insurance lobbyists, and forging a partnership with the New Mexico Superintendent of Insurance. That relentless advocacy led to the unanimous passage of HB 131, making New Mexico the first state to create O&P coverage for physical activity for people of all ages, says Stepp, who is serving in an expanded role nationally as the strategic partnerships lead for SEBCM. Overcoming Challenges Though legislation has passed in eight states at the time of this writing, it hasn’t come without its share of challenges, particularly from insurers. Colorado technically enacted its legislation in January, but implementation has been met with confusion. “We [had] run into complications around what insurance plans would be required to follow this law,” says Montgomery. The Colorado Department of Insurance (DOI) initially claimed that they received communication from the federal Health and Human Services (HHS) stating the Colorado bill would defray costs to the state, and therefore the DOI would not enforce the new legislation in the state-managed individual and small market insurance plans. The Colorado coalition fought back, Montgomery says. “We asked to see the letter from HHS, and when they couldn’t provide any proof of communication, we completed a Colorado Open Records Act request and met with the DOI to discuss the findings,” she says. “This pushback and the voices from our base forced the DOI to reevaluate their stance and their legal obligation to follow the bill language if they did not have proof of opposition from HHS.” The Colorado DOI did release a new bulletin in late March as a result of Colorado coalition’s advocacy efforts, which now includes all plans, and as a result, Colorado won’t have to defray the costs, Ver Kuilen says. Kuffel says that although Minnesota’s SEBCM legislation was introduced and passed in a single session, the Minnesota Commerce Department requires that a fiscal-type report be generated for any legislation that involves an insurance mandate. “Although we did not feel that the results of the report were an accurate assessment of the utilization and costs of O&P devices in Minnesota, we were powerless and could not change it,” says Kuffel, who added that the state’s Office of the Revisor of Statutes also changed some of the bill’s language to include cost defrayalor the insurance companies. “Although that is a cost-sharing program to benefit the process, it was not in our original bill, and we had no control over the addition of the same into the bill language,” she says. In March, the SEBCM delegation in Minnesota learned that the state’s first recreational prosthetic device went through the delivery and payment process, Kuffel says. “We are looking forward to celebrating more successes and providing individuals with O&P devices that will help restore their mobility and improve their lives,” she says. Overcoming Challenges, Continued By comparison to Minnesota and Colorado, implementation of New Mexico’s legislation has gone smoothly. Stepp says the biggest hurdle New Mexico faced was education. “Helping lawmakers, regulatory bodies, and even the opposition understand the real impact of inadequate insurance coverage for O&P care was our biggest challenge. Many people, including decision-makers, had no idea how often individuals were denied devices they needed to live active, independent lives.” The New Mexico SEBCM coalition built relationships, Stepp says. “We didn’t just push policy, we brought real people into the conversation. When you have a mother explaining how her child was told no by insurance to the running blade needed to play at recess with her friends or an athlete sharing how they were forced to stop doing what they love because they couldn’t access the right prosthesis, it’s impossible to ignore.” In addition to working closely with the New Mexico insurance superintendent, Stepp says they also engaged with a group often viewed as the opposition: insurance companies. “Instead of treating them as an adversary, we brought them to the table. By focusing on education, storytelling, and coalition building, we shifted perspectives and created an undeniable momentum for change,” he says. “This wasn’t just about passing a bill. It was about changing the conversation around mobility access in New Mexico, and that’s exactly what we did.” In Michigan, SEBCM is in the early stages of its legislative process. “We are awaiting a draft of our bill and actively working to educate legislators and key stakeholders on the importance of this initiative,” says Kapa, who is the state’s lead for SEBCM. “Our focus is on securing sponsors who will champion this bill through the legislative process.” Eight and Counting Georgia’s House of Representatives passed SEBCM legislation in March. Kim Schofield, a democratic state representative working on the bill, was ecstatic. “With the passage of the So Every BODY Can Move HB 87 legislation, I affirm that every body—no matter its shape, ability, or size—deserves dignity, inclusion, and the freedom to move through the world without barriers by ensuringccess to orthotic and prosthetic care. To me this is more than just policy, it’s a declaration of humanity and a commitment to mobility for all,” Schofield says. To date 12 states have introduced legislation. An additional bill in New Jersey was rolled over from last year, and one resolution was introduced earlier this year in Hawaii. In total, over the past two years, SEBCM has seen 22 states introduce legislation, representing 41 bills, which is an unprecedented amount of policy work for O&P, Ver Kuilen says. “What typically takes a decade, we’ve seen in just two years,” she says. “As one O&P industry leader shared with us, ‘You have created the most engaged group in my 50 years in O&P.’” What has made the SEBCM movement so successful in a relatively short period of time? Our experts agree that nearly everyone sees its benefit. “It’s bipartisan, almost no one sees a downside,” Montgomery says. “Of all the bills that lawmakers have to fight over, this bill honestly feels like a breath of fresh air and the reason why these people want to become politicians in the first place—to make positive changes in people’s lives.” Stepp says the movement’s success comes down to three key things: it’s community-driven, has a collaborative culture, and uses a national advocacy model that empowers change at every level. “SEBCM’s success isn’t just about passing laws,” he says. “It’s about creating a lasting shift in how mobility access, healthcare, and disability rights are viewed in this country. And that’s why we’re seeing real, tangible change happen.” The success of SEBCM can be attributed to its deeply patient-centered mission and the unwavering dedication of the individuals leading this movement, Kapa says. “Strong grassroots efforts have played a critical role in mobilizing support, as has the well-organized structure behind the initiative,” he says. “SEBCM resonates with a broad audience, from patients and caregivers to clinicians and policymakers, making it a compelling and unifying cause.” 28 by ’28 While state-based legislation is crucial due to the complexities of insurance coverage in the United States, Kapa believes a national initiative is necessary to ensure equitable access to care across all states. “A federal framework would help prevent disparities in coverage and ensure that all individuals—regardless of where they live—can benefit from the mobility-enhancing care that SEBCM seeks to provide,” he says. And in an effort to pursue federal reform, SEBCM is working toward a goal of enacting the legislation in 28 states by the Los Angeles Paralympic Games in 2028. “SEBCM can be a catalyst for the next wave of monumental disability rights reform in the United States, serving as an American With Disabilities Act 2.0,” Ver Kuilen says. Its national advocacy model has been a game-changer, our experts agree. “We’ve built an infrastructure that connects states across the country, providing advocates with the coaching, mentorship, resources, and tools they need to successfully push for legislative change,” Stepp says. “I’d love to see SEBCM not only reach our goal of passing legislation in 28 states by the 2028 Paralympics Games but also lay the foundation for a federal bill that transforms access to healthcare and physical activity, not just for the limb loss and limb difference community, but for the entire disability community.” Betta Ferrendelli can be contacted at betta@opedge.com . All photographs by Heather Swanson.

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