2018 Roll on Capitol Hill Preview

Since its inception in 2012, Roll on Capitol Hill has served as an annual rally to educate lawmakers about the needs of the SCI/D community and to train the next generation of advocates. This year’s event, held June 24-27, couldn’t come at a more important time with numerous threats looming over our community.

Thankfully, United Spinal’s voice will be stronger than ever, thanks in part to the rapid growth of advocacy efforts at the state and chapter levels.

For a growing number of attendees, advocacy isn’t limited to once a year in Washington, D.C. Rather, the annual event serves as a model that United Spinal chapters across the country are using to advocate for disability policy in their home states.

Accessible Arizona’s first-ever Roll on Arizona’s Capitol was inspired by lessons learned at United Spinal’s Roll on Capitol Hill. Photo by Heather Zvirgzdins/Chaos in Focus Photography.

For people with disabilities, it hasn’t been the best couple of years to follow the national news. With attempts to weaken and dismantle the Affordable Care Act, threats of huge cuts to Medicare and Medicaid, and the House of Representatives passing H.R. 620, it can often feel like the tide is against us.

Yet when you take a closer look at the issues most relevant to our community, there have been just as many recent wins as losses. Yes, Congress tried to repeal the ACA, but disability activists and protestors helped save it. The Centers for Medicare and Medicaid Services put into place a permanent policy that exempts complex power wheelchair components, such as cushions and headrests, from Medicare’s competitive bidding program. The tax overhaul ultimately retained many essential disability programs that had been on the chopping block.

Veterans scored a win during last year’s Roll, when the Accountability and Whistleblower Protection Act, which United Spinal advocated for, was passed and signed into law. This law helps U.S. Department of Veterans Affairs leadership maintain a healthy workforce by removing bad employees more efficiently, which, in turn, helps the agency fulfill its mission effectively.

Many of these successes are direct results of hard work and activism from the disability community. United Spinal’s policy team, headed by Vice President of Government Relations Alexandra Bennewith, has been leading the fight on behalf of the organization. Central to its work has been an effort to grow United Spinal’s community and grassroots advocacy network. Each of the six regions across the country now has an advocacy coordinator, and those coordinators are quickly working toward identifying an advocacy coordinator at each of the 50 chapters across the country.

Brook McCall is the grassroots advocacy manager for United Spinal, focused on growing and setting up the communications channels for this nationwide advocacy network. “There are lot of people in neighboring states or across the country who are doing parallel advocacy work, but people don’t know about it,” she says. “We’re getting that communication line set up so that everyone will know if they’re working on parallel issues, they can connect and learn from one another.”

McCall hopes the network can get more chapters involved in advocacy efforts. “It’s not as daunting as a lot of people think it is. Legislators really want to hear from us,” she says. “I’m just trying to be a spokesperson for getting people involved and taking [away] the fear of the unknown or that it’s going to be a scary experience. We’re just trying to make it as accessible as possible and easy for people to get involved.”

Beyond Washington, D.C.

For a growing number of ROCH attendees, advocacy isn’t limited to once a year in Washington, D.C. Rather, the annual event serves as a model that United Spinal chapters across the country are using to advocate for disability policy in their home states.

Accessible Arizona hosted a Roll on Arizona’s Capitol in January that focused on legislation to increase the number of accessible showers in new multi-unit housing projects. The Greater Atlanta chapter hosted a Rare Disease Day to speak with state legislators about the needs of that community. The Richmond chapter recently got legislation passed that requires Virginia to keep data and a registry of all spinal cord injuries in the state. Members from both Richmond and Atlanta joined up with a group called Warrior Momz to rush the U.S. Capitol in March to demand better access to and insurance coverage for activity-based therapies.

“We kind of just learned how to be a citizen and talk to the policy makers and voice our needs and concerns,” says Sharon Drennan, chapter leader of the Richmond, Virginia, chapter.

Roll on Capitol Hill is where the Richmond, Virginia, chapter learned the skills and gained the confidence to be active and engaged citizens.

The state-level events may all have been advocating for different policies — measures that make sense for individual chapter’s states and communities — but they all share one thing in common: They came about from what organizers have learned attending ROCH. “Last year was my first year that I went, and I had such a great time,” says Gina Schuh, who serves as chapter leader for Accessible Arizona. “I really saw the amount of impact that it can make, and it inspired me to do it on a state level.”

Drennan echoed similar sentiments. “It’s always been inspiring and motivating for me,” Drennan says. “It’s how I learned to be an advocate. If I didn’t have that experience with ROCH, I wouldn’t have the confidence or the know-how to do what I’m doing locally.”

“Because we have United Spinal, we have so many people we can reach out to for help first. There’s no way I would have continued on with what I’ve done if it weren’t for ROCH,” adds Kim Harrison, of the Greater Atlanta chapter of United Spinal. “By the time we were done [at ROCH] we just all had goose bumps from our last meeting because it was so productive. … You just felt like you had moved the whole world in one day by one person taking interest and actually caring about what you’re saying.”

Bennewith and McCall say getting attendees excited about advocacy is one of the biggest goals of ROCH. Thanks to the new advocacy network there is more support than ever to help state leaders advocate on the local level. By being active throughout the year, individuals and chapters can start to build relationships with their local policymakers, to the point where policymakers feel that they can reach out to United Spinal folks for information when they need it.

It’s only by being visible, building relationships and advocating for the things that are essential to our lives that we start to see substantive change. But as anyone who has attended ROCH can validate, advocacy is a lot more accessible and fun than it might seem. As Harrison puts it, “I don’t care what anyone says, one person can make a difference, and you will. You’re gonna love it.”

Policy Priorities

The policy priorities for the 2018 Roll on Capitol Hill are centered on three of the most pressing issues for people with disabilities — travel, healthcare and the ADA.

Air Travel Rights
Sen. Tammy Baldwin (D-WI) and Rep. Jim Langevin (D-RI) are championing air travel rights for people with disabilities with the Air Carrier Access Amendments Act, S. 1318 and H.R. 5004. The bills would:
• Increase penalties for damaged wheelchairs, and allow air travelers to sue in court to recover damages.
• Ensure higher standards for accessibility, safety, and airport and airline employee training.
• Help create a Passengers with Disabilities Bill of Rights along with a federal advisory committee on the air travel needs of passengers with disabilities.

Healthcare — There are a number of healthcare priorities, including:
• Fight against ACA repeal-and-replace efforts, and preserve the prohibition on insurance companies discriminating against people with pre-existing conditions, while advocating to reduce copayments and deductibles for eligible ACA enrollees.
• Advocate for the correct rehabilitative therapy for the SCI/D community.
• Oppose cuts to Medicaid and ensure people with disabilities have the rehabilitative benefits and pharmaceutical and medical equipment coverage they need such as:
• Ensure individuals who use manual wheelchairs have access to needed complex rehab technology — seat cushions, backrests and other essential components — by supporting H.R. 3730, which would make Medicare exempt these items from its competitive bidding program.

ADA — Stop a Senate companion bill to H.R. 620:
• Earlier this year, the U.S. House of Representatives passed H.R. 620, the ADA Education and Reform Act, a measure that would require a person with a disability to give a business a notification letter and wait no less than 120 days before filing a lawsuit when encountering a physical barrier. For it to become law, the Senate would have to pass a companion bill. ROCH attendees will be making sure senators understand how this “notification and cure” provision violates the civil rights of people with disabilities and actually leads to more barriers to public accommodations, not fewer.

• Support the Caring for our Veterans Act, S. 2193, which permits veterans with physical disabilities to continue to have the opportunity to secure care close to home without having to fight VA bureaucracy to receive medical benefits, as they currently do under the VA Choice Program. S. 2193 also outlines improvements to patient safety regarding prescription medications, and continuity between VA and non-VA providers regarding service-connected injuries or illnesses.
• Support HR 4146, the Disabled Veterans Life Insurance Act of 2017, which increases insurance amounts for service-disabled veterans, since no updates have been made since the 1940s.

— Seth McBride