Let Kids (and Adults) Play: Policy Efforts to Expand Access to Recreational Prostheses Gain Momentum

When Maine passed a law in May 2022 requiring insurers to approve claims for recreational prosthetic devices for children under 18, a ripple began spreading across the country. The Maine victory gave rise to a joint policy and advocacy initiative from the American Orthotic Prosthetic Association (AOPA), the National Association for the Advancement of Orthotics and Prosthetics (NAAOP), the Amputee Coalition, and the American Academy of Orthotists and Prosthetists (the Academy) dubbed So Kids Can Move. Advocates in other states quickly took note of the Maine law, called “An Act to Improve Outcomes for Persons With Limb Loss,” and began drafting similar legislation. While the details of each state’s proposed bills differ, the mission is the same: to provide access to the prosthetic devices that allow children to be physically active. Currently, insurance covers only basic everyday-use prostheses for those with limb loss. It does not cover activity prostheses, including those with blades for running or specialized feet or hands. So Kids Can Move is based on the fundamental notion that no single O&P device can replace the vast array of fundamental human movements lost as a result of amputation, disease, or disorder. The O&P EDGE spoke with individuals involved in various areas of this initiative for more insights and an update on the progress of expanding legislation. Collaboration Is Key Support from multiple sources is important to achieve results in moving legislation for increased prosthetic access forward. “This is not something that can be done by any one person or organization alone; the collaboration is key—from the highest level with our national partners to our on-the-ground advocates who are leading the charge,” says Nicole Ver Kuilen, manager of public engagement for AOPA. “AOPA and NAAOP had already been working on a policy and advocacy initiative to define physical activity as medically necessary—then we got wind of Maine, and that set forth an incredible amount of excitement around creating a national movement.” Along with others from AOPA, NAAOP, the Amputee Coalition, and the Academy, Ver Kuilen is helping lead this national movement, and her past experience has been instrumental in its continued progress. Ver Kuilen lost her lower left leg to bone cancer when she was ten years old. After fighting the healthcare system status quo for more than a decade in pursuit of better, more affordable access to athletic prostheses, she became inspired to advocate and engage in political activism around the topic. In 2017, Ver Kuilen embarked on a 1,500-mile triathlon to advocate and educate others on how current insurance laws prevent those with limb loss and limb difference from living full, healthy lives. She completed those miles all on her insurance-mandated prosthesis, built only for walking. Her journey and passion project, Forrest Stump, has since become a nonprofit organization dedicated to promoting equitable access to physical activity for all individuals with disabilities. “This legislation isn’t just about access to technology,” Ver Kuilen says. “It’s about access to the human right to move, and all the physical and mental health benefits that come with physical activity.” In addition to Maine, six states have now introduced similar bipartisan bills: Colorado, New Mexico, Indiana, Arkansas, New Hampshire, and Illinois, where advocacy groups are spearheading efforts on the ground. Oregon and Tennessee have also introduced Insurance Fairness legislation during this year’s session. Although neither include So Kids Can Move’s activity-specific device coverage, those provisions will likely be added in future sessions. Progress in Colorado In March, Colorado broadened its House Bill 23-1136, originally named “So Colorado Kids Can Move,” to include people of all ages. It’s now called “Prosthetic Devices for Recreational Activity.” Colorado’s bill is sponsored by two Democrats and two Republicans, including State Representative David Ortiz (D). Ortiz is a military veteran, disability rights advocate, and the first Colorado lawmaker to use a wheelchair. “Colorado was the first state to pass a bill to pay for the most appropriate medical device for amputees,” says Jeffrey Cain, MD, past chairman of the board of the Amputee Coalition who has bilateral transtibial amputations. Cain played an instrumental role in passing that law, Insurance Fairness for Amputees, known as the Prosthetic Parity Law, in 2001, as well as similar prosthetic access laws in 20 other states. “When I became an amputee, even though I had insurance, I got a bill for my first prosthesis for $8,000 of the total $9,000 it cost—and when I joined a support group, I heard similar stories from everyone there,” Cain says. “Arms and legs are not a luxury.” Cain was also the first-ever adaptive slalom snowboarding gold medal winner in the US National Snowboarding Championship, and he understands the role that proper prostheses play in physical and mental health. “We know that kids with disabilities are 4.5 times less likely to be active,” he says. “Data show how inexpensive this coverage is when spread across the general population—only one to nine cents per person, per month—and how effective it is at getting people back to sports and activities.” Cain says volunteers, advocates, and lobbyists are essential to these efforts. He wants those within the O&P community to get more involved based on the notion that this is not only good for kids and others with limb loss, but it’s also good for their businesses. “We can’t do this without their networks and support,” he adds. Angela Montgomery, CPO, Prosthetic & Orthotic Group, Colorado, is among those in the O&P community getting involved to champion change. “As a CPO in the industry for 20-plus years, I had accepted the status quo of patients having to rely on donations in order to participate in recreational activities,” she says. “With Nicole leading the national movement of this, I decided it was time to get involved to be a change maker.” To create an organized state voice for Colorado, Montgomery founded RMOPC. She worked closely with Ortiz and was thrilled when he agreed to take on the bill. On March 1, Ortiz, Coloradoans with limb loss and difference, and others in the O&P community turned out to the State Capitol for Hill Day to rally and proclaim March 1 as Disability Rights Advocacy Day. “The federal initiative is a marathon, and the state issues are a sprint,” Montgomery says. “March 1 was a launch of our bill to the general public.” In addition to all the forward progress, Montgomery says that Ver Kuilen’s push to change the definition of medical necessity has been paramount to tackling that marathon. “This is truly a human rights and anti-discrimination issue,” Montgomery says. “Here we are in 2023, and most amputees still have to rely on charitable organizations to obtain recreational prostheses. That needs to change—and the fact that we have a bill is a win.” While more than 50 nonprofits exist in the United States to provide donated O&P care help to thousands of people each year, they cannot meet the needs of the more than two million people living with limb loss, and the countless others living with limb difference and mobility impairment. Experts across O&P agree about the benefits of passing this type of legislation from a health and a cost perspective. Not only does greater access to physical activity reduce the risk of disease, depression, and other illnesses, but equipping people with the devices they need also reduces the risk of injury from performing an activity with an inadequate prosthesis. For insurance companies, this extends the life of daily-wear prostheses and increases the time between replacements. “As an athlete, I was breaking my only prosthesis about every six months,” Ver Kuilen says. Cain agrees there are less obvious implications of using an improper prosthesis, particularly for youths. “Using a device that isn’t made for what a person is trying to do becomes a hardship,” he says. “Either you break it and possibly injure yourself, or you won’t be good at the activity—and then you have a kid sitting in the stands instead of participating.” [caption id="attachment_246265" align="alignright" width="300"] Colorado State Representative David Ortiz poses with members of the O&P community at the Hill Day event at the State Capitol March 1. Photograph by Nickie Cole.[/caption] Sharing Resources Streamlining the expansion of this movement is top of mind for all of those involved, and they’re quickly learning and applying that knowledge from state to state. “We are trying to create a blueprint and a model that we can replicate to scale the effort,” Ver Kuilen says. “We’re learning a lot through the process, from being on the ground with both local and high-level advocates and having them share wins and lessons learned.” For Montgomery’s part, she joins monthly calls about national efforts to share Colorado updates and collaborate on lessons learned and how to proactively remove roadblocks that could simplify legislation for other states moving forward. “Hopefully we’ll get to a point where this will be plug and play,” she says. Ver Kuilen initially shadowed Jordan Simpson, who has a transtibial amputation and drove efforts to get the bill passed in Maine, as part of her NAAOP-sponsored Breece fellowship. Simpson became an advocate for better access to prostheses during her time as a social work undergraduate at the University of New England. Simpson worked closely with Rep. Colleen Madigan (D) to draft the bill that was ultimately passed in Maine. While working alongside Simpson, Ver Kuilen started the conversation around changing the definition of medical necessity. Changing that definition is important to Maggie Baumer, JD, Hanger Clinic manager, Massachusetts, who also underwent a transradial amputation. “When I became an amputee, I quickly learned about the definitions of medical necessity, and I had personal experience with being told that the prosthesis that was best for me wasn’t medically necessary, or was ‘cosmetic,”’ she recalls. “When Nicole suggested changing the definition of medical necessity, I was in total agreement.” The next step was defining access to physical activity as a human right. With that foundation in place, and the shared resources and lessons learned by the states making the first inroads, the entire collaborative group is excited about what’s ahead. Following New Mexico’s Lead “After Maine, New Mexico is one of the states that’s taken this the farthest, so we’ve learned a lot from others that are earlier on in the process,” Baumer says. Ver Kuilen and others have been key to progress in New Mexico, which was fast-tracked because of the state’s abbreviated legislative session. She met with a state insurance superintendent and legal team earlier this year to discuss the discriminatory aspects of insurance coverage restrictions. That group agreed with the position that discrimination is a factor in insurance restrictions and expanded the bill to encompass medical accessibility and prohibit unfair trade practices based on the level of disability. By virtue of this, New Mexico could reduce the cost of the bill, which was recently signed into law. Momentum is also building in Oregon, where Ver Kuilen recently met with a group that’s working to introduce an insurance fairness bill next year. In It Together [caption id="attachment_246266" align="alignright" width="263"] Max Scherer, a spokesperson for So Coloradans Can Move, shows his prosthesis to Representative Richard Holtorf. Photograph by Emma Scher.[/caption] The deep-level admiration this group of advocates shares for one another is as palpable as their passion for the So Kids Can Move initiative itself. They’re all quick to give one another credit and kudos for the roles each plays in this important legislation. “All of these groups are collaborating and coming together behind a singular mission to serve our patients and giving them access to the healthiest lives they can live,” Baumer says. In Colorado, Montgomery says she’s witnessed the same. “I love how people and all of the O&P companies in the state of Colorado have come out in support of this,” she says. “We all do this for the same reason: to help people and improve their lives. And real change like this can multiply the effects of helping others so it’s been fun to see this cohesiveness and this incredible synergy of people coming together.” Beyond making kids’ lives better, this legislation has been a shot in the arm for amputee advocacy and the O&P profession. Ver Kuilen’s colleague Sam Miller, who manages state and federal advocacy at AOPA, says he’s excited about the overall momentum this movement has generated. “This is laying the foundation for a core group of advocates that can work on all kinds of initiatives,” he says. “There are so many fields that O&P touches, so if we can grab their attention with this initiative there is endless potential going forward.” Ver Kuilen hopes the achievements and progress around So Kids Can Move will be a powerful catalyst to inspire and reinvigorate the entire O&P profession. “So Kids Can Move is catapulting O&P into the limelight for better education and awareness among policymakers, allowing practitioners to do the work that got them inspired to get into this field in the first place,” she says. “So many of AOPA’s members are experiencing some level of burnout, and what a great way to reignite their passion and ensure they can truly transform lives through orthotic and prosthetic care.” At the time this article was written, the Colorado bill had unanimously passed its first committee hearing with the age limitation amended out and was headed for the state’s appropriations committee. Visit our sister publication, Amplitude, for regular updates on pending legislation at livingwithamplitude.com/amputee-insurance-law-state-by-state-updates . Tara McMeekin is a writer and editor based in Parker, Colorado. Editor’s note: Read more about the New Mexico legislation in “Power to the People” in Amplitude’s May issue. Opening Spread Credits: Left and right: Ladanifer/stock.adobe.com; Center: hedgehog94/stock.adobe.com

Let Kids (and Adults) Play: Policy Efforts to Expand Access to Recreational Prostheses Gain Momentum

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