Amputee Activism: Speaking Out for Amputee Rights

Healthcare reform has gone through several iterations over the years, including many of the provisions in the Affordable Care Act (ACA), which went into effect January 1, 2014. Amputees must understand the various laws and stipulations—and how they affect the rights of amputees and people with disabilities—to be able to advocate for themselves.

Fight for What’s Right

One piece of current legislation negatively affecting amputees is the “one limb per lifetime” restriction in New York State’s health benefits package. By this rule, New York residents are allowed only one prosthesis per limb per lifetime, including replacement parts. The ACA is supposed to prohibit yearly or lifetime caps on essential health benefits (EHBs). This applies to the EHB package, which affects all private plans under the ACA. 

Daniel Bastian, CP, co-founder of Progressive O&P, became the unofficial leader of the charge to overturn this legislation when he found that the prosthetic care he was providing to his patients was being denied by their insurance plans. He began the fight with the New York legislature to help his patients and other amputees in the state, including himself.

Bastian didn’t intend to become an activist. He says that his above-knee amputation, which he underwent 35 years ago due to cancer, was the best decision he ever made. “It got me back to being active,” he says. It also led him to quit his job at IBM to become a prosthetist and, in 2000, open Progressive O&P with his business partner, Sal Martella.

“As far as becoming a lobbyist, it’s certainly not something I wanted to do or enjoy doing. But nobody was really doing anything in New York State,” he says. And now that he’s started working on the problem, he’s not going to quit until there is a permanent solution.

“I was going to do whatever I could to get this fixed, and talk to as many people as possible, and get this law changed,” Bastian said. “Aside from breaking the law, it’s just morally and ethically wrong.”

Restore What Was Taken

Tami Stanley

Bastian is not the first amputee to fight for insurance coverage. Tami Stanley had been a softball player for the Orem, Utah, city team for years when a slide to base shattered her lower right leg. The five fractures resulted in several years of surgeries, infections, three years in a wheelchair, and eventually the amputation of her leg below the knee in 2004.

Adjusting to life as an amputee was difficult for Stanley because she was used to an active lifestyle. “It was hard for me to imagine that life could be as productive physically as it was before, [but] it has been,” she says. “You learn to live life in a different way.”

However, when Stanley first tried to get a prosthesis, she was denied due to insurance restrictions. Although she had two commercial insurance plans, she received her prosthesis through Medicare. “[The insurance companies] had spent close to $1.25 million in medical care and surgeries to try to save my limb, and eventually to amputate it, but then didn’t want to [pay] $18,000 to restore what had been taken,” she says. This discrepancy in coverage fueled Stanley’s determination.

She took the issue to government officials in Utah. She fought against insurance lobbyists to convince the assemblymen and senators that amputees deserve coverage for the prosthetic devices that will get them back to productive, independent lives. “This was the right thing to do,” she says.

In 2010—after four years of Stanley’s persistence and hard work—Utah signed into law Fair Insurance for Amputees, which states that all Utah residents with individual or small-employer health plans are eligible for prosthetic coverage that is equal to the coverage that Medicare provides.

“It had been downsized a little bit from the initial bill filed, but it was a good bill,” Stanley says.

Use Your Voice

Not everyone can become a citizen lobbyist like Stanley and Bastian. Not everyone can donate the amount of time and determination necessary to push back on the government. But everyone can do something.

One place to start for those who want their voices to be heard would be to contact their state and federal legislators and tell them the problem and the action they’d like the officials to take. It shows the officials that their constituents are worried about an issue that needs to be looked into and resolved. Elected officials care about the issues affecting their constituents.

“If there is an issue that is morally right, you need to fight for it. Citizens can have a voice, you just have to know the avenues that you can take,” Stanley says. “It’s a simple thing to do. I found that does have a big impact.”

To try to overturn the “one limb per lifetime” provision in New York, Bastian worked with a number of organizations and people like Peter W. Thomas, JD, principal with Power Pyles Sutter & Verville, Washington, and a bilateral below-knee amputee since 1974. Thomas also serves as the general counsel for the National Association for the Advancement of Orthotics and Prosthetics (NAAOP) and counsel for the O&P Alliance.

While Bastian worked with New York legislators in the Assembly and Senate, Thomas and NAAOP President David McGill, also a New York resident and amputee, helped strategize, draft the underlying arguments, and provide support. Thomas also helped push the issue in Washington, working with officials at the Department of Health and Human Services to try to develop federal pressure on the state to fix the problem. His message: This is an “egregious provision” that is “out of sync with the [ACA] and needs to be corrected in the 2016 plan year.”

As of press time, the petition that Bastian set up on his website, onelimbforlife.com, had amassed more than 15,500 signatures in just two months. And shortly prior to the June 1 deadline for changes to the 2016 plan year, it was announced that the previous restriction will be removed from New York’s benchmark plan. Beginning January 1, 2016, the plan will “include coverage for the cost of repair and replacement of external prosthetic devices for both adults and children,” according to the executive director of the state’s health insurance exchange.

Empower Amputees

Two organizations that led the campaign to overturn the health insurance provision in New York were the NAAOP and the Amputee Coalition, a nonprofit organization created to empower amputees through education, support, and advocacy.

“We are hoping to go state-by-state to improve prosthetic coverage over the years,” Thomas says. “And we’ll never be safe. There’ll always be a time when they cut some benefit, or say no mechanical enhancements, no deluxe items, no convenience items. There’ll always be insurance plans that try to cut O&P care in order to save money. So the amputee community needs to remain vigilant and band together; join the Amputee Coalition or work with NAAOP; do whatever they can at their own state level to understand what the state is doing and to hold people’s feet to the fire.

“No pun intended.”

By Stephanie Zultanky

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