2022 ROLL ON CAPITOL HILL RECAP

ROLL RETURNS TO THE HILL

PHOTOS BY GABRIELA ISABEL PHOTOGRAPHY

In June, more than 100 advocates from 29 states and the District of Columbia attended United Spinal Association’s 10th annual Roll on Capitol Hill. After canceling the event in 2020 and hosting a fully virtual event last year due to COVID, leaders were delighted to see wheelchair users rolling through the halls of Congress again, completing more than 150 visits to lobby for the SCI/D community. “It was so nice to reconnect with everyone and see our United Spinal family in person again after three long years,” says Alexandra Bennewith, vice president, government relations at United Spinal.

“Roll on Capitol Hill exemplifies our passion for the empowerment and advancement of people with disabilities. Everyone who has gathered with us — from member advocates to dedicated partners — shares a vision of a future where people with disabilities can live independently and pursue their dreams. And that vision begins here in Washington, as we ensure future generations of wheelchair users have a seat at the table when policies are created that impact our lives,” says Vincenzo Piscopo, president and CEO of United Spinal.

This year, the event highlighted these important issues: • Supporting more funding for SCI Model Systems to ensure that newly injured individuals receive necessary healthcare and services. • Ensuring passage of the Air Carrier Access

Amendments Act and advocating for other protections for travelers with disabilities. • Emphasizing the importance of personal care services to pursuing economic independence and mobility, including elimination of subminimum wages for people with disabilities. • Advocating for Department of Veterans Affairs funding of automobile grants for disabled veterans, that are necessary for community living. • Action on outdated and restrictive federal regulations that prevent wheelchair users from having access to the wheelchair that’s right for them. For updates, subscribe to the United Spinal advocacy newsletter at unitedspinal.org/newsletters.

“I ENCOURAGE MY FELLOW ADVOCATES TO FOLLOW UP, KEEP ATTENDING THESE EVENTS, AND MAKE YOUR VOICE HEARD.”

— ADAM LANE

Top left: Engineer and SCI research advocate Rob Wudlick meets with members of United Spinal’s Corporate Advisory Council during ROCH.

Top right: The mood was joyful at the Congressional Reception. Advocates enjoyed reconnecting and relaxing after a successful day of legislative visits.

Lower left: United States Department of Transportation advisor Kelly Buckland shares a laugh with United Spinal Association board member Monica Wiley.

Lower right: Mississippi chapter leader Johnny McGinn enjoyed his firstever ROCH legislative visits.

Left: “This was my fourth Roll on Capitol Hill,” says Adam Lane, a United Spinal member from Oklahoma. “One of the things I really enjoyed was that my representatives remembered talking to me in the past, so having that rapport makes a huge impact and keeps policymakers engaged with you. I encourage my fellow advocates to follow up, keep attending these events, and make your voice heard.” Top: Brian Denny, a United Spinal member from South Carolina, meets with Rep. Joe Wilson (R-SC).

Above: Kenny Menendez shakes hands with Kansas member Scott Mendenhall while fellow Florida member Al Salvi looks on.

“Wherever you find yourself, in whichever space, you are bringing that disability lens to the conversation,” said Emily Voorde, assistant director, White House Office of Public Engagement, in her keynote address. She is pictured with Vincenzo Piscopo, president and CEO of United Spinal Association.

HOW WE CAN CONTINUE OUR ADVOCACY WORK TOGETHER

Our advocates may have departed Washington, but the Roll on Capitol Hill continues with all of you.

We need to make sure that Congress continues to hear from us on the issues we raised on Capitol Hill in June. One of the most important factors in getting members of Congress to support United Spinal on an issue is hearing from constituents back home via emails and phone calls. Sending messages through our Action Center is easy and can make a big difference.

Take action at unitedspinal.org/ action-center/#roch and stay tuned to find out more about our Virtual Advocacy Day Sep. 13.

— AlexAndrA Bennewith, vice president, government relations, United Spinal Association

RICHARD BAGBY:

From Peer Support to Policy

BY SETH MCBRIDE WITH REPORTING BY HILARY MUEHLBERGER

Richard Bagby was sitting in a packed hotel ballroom with a bunch of people he didn’t know at a conference he wasn’t sure he wanted to be a part of. It was the first Monday morning of United Spinal Association’s 2016 Roll on Capitol Hill. As thenPresident James Weisman started his introductory address, all Bagby could think was, “How long am I going to have to do this? We’re here for six hours?!”

He thought about how he could be back home in Virginia, meeting patients at his local hospital, helping them adjust to life with a spinal cord injury. He could be getting things done instead of sitting around in a hotel. But then he started listening. Weisman talked about the issues they were going to tackle, like legislation to improve communitybased services and provide better access to mobility equipment. This wasn’t about making signs and picketing at the U.S. Capitol. It was about meeting with legislators, having conversations and making logical arguments about concrete policies that could help improve people’s lives. “It kind of clicked for me,” Bagby says.

PUTTING PEOPLE FIRST

Bagby never set out to be an advocate. In fact, he says, “I never labeled myself an advocate until Alex [Bennewith] called me and let me know I’d won Advocate of the Year,” he says. His focus after he was injured was on helping individuals adjust to life with a spinal cord injury. He was injured in 2008 and became friends with a couple of his occupational and physical therapists at rehab. “Early on in my recovery they started asking me to come and chat with some of their clients because they were experiencing some of the same things I had,” he says. “I didn’t realize at the time that I was doing peer mentoring. I was just chatting with people.”

The chats became more regular. “It became apparent that there was a huge need for it that I couldn’t fulfill on my own.” At the same time, United Spinal Association reached out because they didn’t have a chapter in Virginia. Bagby and a woman whose son recently had a spinal cord injury decided to start a chapter. Bagby’s focus was on the peer mentoring program, and he says that everything the chapter does has developed out of that. “We take on issues as they organically present themselves to us via our membership,” he says.

That approach has led to programs as diverse as a ramp-building program to help people get back into their homes after rehab and a massive effort to ensure a new SCI-rehab facility went well beyond ADA compliance, setting a new standard for hospital accessibility.

“Richard has helped build the Virginia chapter into a model for how United Spinal can serve its community,” says Vincenzo Piscopo, president and CEO of United Spinal Association. “The chapter really goes above and beyond to make sure all its members — from the newly injured to longtime wheelchair users — have the tools and support they need to succeed.”

Above: The first time Bagby attended Roll on Capitol Hill in 2016, he didn’t consider himself an advocate. This year, United Spinal Association named him Advocate of the Year (below right).

LESSONS FROM THE ROLL

Bagby had never delved into legislation or government policy before Roll on Capitol Hill. But his initial experiences at ROCH taught him a few things. First, that policy advocacy uses some of the same skills that peer mentoring does. It’s having conversations and educating people — in this case, legislators and staff rather than people with new spinal cord injuries — about the realities of life as a wheelchair user.

Second, most of the policies that they

were advocating for made sense from both a human and a fiscal perspective — they were an easy sell. Once you start comparing wheelchair components to the cost of flap surgery or extended hospital stays, quality cushions and well-fitting wheelchairs don’t seem so expensive. “We’re trying to educate the legislators to spend a penny so they can save a dollar,” says Bagby.

Third, advocacy often works. “We’ve always had at least one piece of legislation that was successful from [ROCH], which is incredibly rewarding,” he says.

But perhaps the most empowering thing about attending ROCH was seeing that there are hundreds of other people passionate about tackling the same issues. “Roll on Capitol Hill embodies all the work that chapters are doing across the country,” he says. “The fellowship and community built around it is worth [attending] in and of itself.” Bagby was able to see and learn from what other chapters leaders were doing in their own communities and take those lessons with him back to Virginia.

TAKING IT HOME

Not all issues that presented themselves to the Virginia chapter were solvable by simple solutions like building ramps. Bagby met a man named Chris in 2019, a high-level quad who had been discharged from rehab. Chris was going to go home, but his family decided they needed a little more time to make their house more accessible. So he went to a skilled nursing facility for what was supposed to be short stay. Chris still isn’t out of the SNF.

He originally had been fitted for a power wheelchair through Numotion, but NuMotion wasn’t able to deliver it to a skilled nursing facility. Virginia Medicaid policies stated that they wouldn’t reimburse complex rehab technology for people living in nursing homes, only for those living in the community. So Turpin wound up in a cheap, ill-fitting Hoveround power wheelchair. “He’s now had flap surgeries, a stroke and multiple hospital stays because he doesn’t have the proper equipment,” says Bagby. “Just yesterday I learned that he had a bilateral amputation because of more sores.”

His experience at Roll on Capitol Hill had shown that taking the issue to the legislature could be successful, but it would also be a ton of work. Megan Murphey, an ATP from Sheltering Arms, the hospital at which Bagby had helped with the design process, heard Chris’s story and convinced Bagby to start the fight. “She had zero advocacy experience,” he says. “But she gets really pissed off when she sees an injustice.”

Fortunately, Bagby and Murphey realized their knowledge was limited — they needed help. “The first thing we did is form a working group,” says Bagby. They recruited people who worked for Numotion, other vendors, local advocacy organizations, people who knew Medicaid coding and rules and who had connections at Virginia’s Department of Medical Assistance, which runs the state’s Medicaid program. “Megan and I became organizers. … We were getting the right people at the table. We only knew a smidgen of what the group needed to know, but these 50 people are each adding their piece. When you put that together, you get a bill, and a successful one.”

In April, Virginia governor Glenn Youngkin signed House Bill 241 into law, which requires Medicaid officials to study and work toward allowing coverage for complex rehab technology to people living in nursing homes. It’s a major step toward making sure that people get the equipment they need, wherever they’re living — a step that likely never would’ve been taken had Bagby not ventured into the ROCH hotel ballroom seven years ago.

What Bagby has learned since then is that he is an advocate, and advocacy, just like everything else in life, is about people. Being successful starts with one skill: “Networking, networking, networking. It’s so beneficial across so many different aspects, especially for folks with spinal cord injuries — whether you’re trying to figure out how to become independent, or you’re trying to make legislative change or societal change. It’s knowing people. And you can’t know people without getting out there and introducing yourself.” “ROLL ON CAPITOL HILL EMBODIES ALL THE WORK THAT CHAPTERS ARE DOING ACROSS THE COUNTRY. THE FELLOWSHIP AND COMMUNITY BUILT AROUND IT IS WORTH ATTENDING IN AND OF ITSELF.”

Vincenzo Piscopo, John McElroy and Bagby celebrate at the 2022 ROCH Congressional Reception.