United Spinal Association and over 100 member advocates from across the country gathered in Washington, D.C. on June 23-26 for the 8th Annual Roll on Capitol Hill to ensure wheelchair users and all people living with spinal cord injuries and disorders (SCI/D) have a seat at the table in shaping disability policies.
For 8 years, Roll on Capitol Hill — United Spinal’s annual signature policy event — has provided people with SCI/D a channel to hone their advocacy skills and be proactive in fighting for their rights and independence, at both the state and national level.
This year, with approximately 250 Congressional office visits completed in one day and a record turnout of new member advocates, Roll on Capitol Hill attendees advanced key issues in face-to-face meetings with their state representatives, including:
- Promoting universal accessible autonomous or self-driving vehicles that include wheelchairs and wheelchair users;
- Improving access to quality affordable healthcare for people with disabilities and maximizing appropriate rehabilitation outcomes and therapies;
- Improving access to community care for veterans with disabilities
United Spinal was also pleased to welcome many clinicians to Roll on Capitol Hill, who had the opportunity to meet member advocates and staff, as well as learn about our programs and services and ways to possibly collaborate in the future.
“Being a part of the movement. I’ve heard it said, many times, ‘if you aren’t at the table, you’re on the menu.’ It’s so important that we show up and make ourselves seen and heard,” said Erin Michael, Manager, Patient Advocacy and Special Programs at Kennedy Krieger Institute.
“I got into advocacy because of wheelchairs. I specialize in wheelchairs and saw the cuts happening to funding and couldn’t sit back. I needed to be a part of the solution. However, once I started on that path, I saw just how much still work needs to be done across the board. It’s all important,” added Michael.
“I was greatly encouraged by the degree of stakeholder involvement — the commitment I saw from all of the participants: United Spinal staff, healthcare providers, and consumers. I would like to see and plan to encourage more involvement from my colleagues in future ROCH events,” said Matthew E. Davis, Clinical Director, TIRR SCI Medical Program.
“United Spinal organizes advocacy efforts among consumers, and has also been a great collaborator for SCI-specialist healthcare providers. Whenever I spend time talking with United Spinal staff, I learn something new about the services United Spinal provides to people needing guidance. The organization truly fills a gap that would otherwise go unfilled,” added Davis.
On June 24th, attendees participated in the ‘Advocacy Academy’, a full-day of policy briefings from fellow advocates, Federal agency officials along with representatives from automobile manufacturers and coalitions as well as the SCI/D research and assistive technology sectors that focused on pertinent legislative issues impacting the disability community.
Attendees were also provided insight on how to perform successful meetings with their congressional representatives and to utilize the power of their personal stories to demonstrate how specific legislation impacts their lives.
The keynote speaker at the Roll was Finch Fulton, Deputy Assistant Secretary for Transportation Policy, US Department of Transportation, who discussed the agency’s work on new accessible transportation and automated vehicles (AV) guidelines and a renewed focus on both innovation and safety in AV and related accessible technologies.
On the evening of June 25th, United Spinal hosted a Congressional Reception to recognize members of Congress for their outstanding service to people with disabilities and veterans. Honorees included:
- Congressman Brian Mast (R-FL) – 2019 James J. Peters Distinguished Veterans Legislator Award
- Congressman Frank Pallone, Jr. (D-NJ) – 2019 Outstanding Congressional Leadership Award
Congressman Jim Langevin (D-RI), a power wheelchair user who received the organization’s first Roll on Capitol Hill Outstanding Congressional Leadership Award in 2012 for his work to promote productive, independent lives for people with disabilities, also made a guest appearance.
“I want to thank each and everyone of you for showing up and making your voices heard. Your advocacy on Capitol Hill reinforces disability awareness and inclusion. I will do everything I can as your advocate to make sure our visions and goals are realized,” Langevin said.
Kenny Salvini of Washington State and Rob Wudlick of Minnesota also received the 2019 Finn Bullers Advocates of the Year Award for their leadership and long-term commitment to policy and advocacy issues impacting the SCI/D and broader disability community.
“It’s pretty humbling to see 100 people in wheelchairs rolling around Capitol Hill sharing their stories. The greatest benefit for me is meeting the different leaders from across the country. Every time I come it seems I make new friends for life,” said Salvini.
“The greatest benefit from attending the Roll on Capitol Hill was increasing awareness about the importance of advocacy and gaining knowledge that there is an outlet to advocate. As both providers and consumers of healthcare, we as a community often get upset about the disparity in care and what appears to be and is in fact arbitrary rules and laws that affect us. We often get frustrated and angry about injustices, but we do not have an outlet to attempt to correct these inequalities. United Spinal offered me a powerful space to discuss the healthcare problems as they relate to the world of spinal cord injury and just as important, a direction on the state and federal level to change these laws with a group of like-minded individuals.,” said Jeff Berliner, DO, Medical Director of SCI Research, Craig Hospital.
“I believe strongly that people with SCI/D should be afforded the opportunity to have the best outcomes through increased knowledge of spinal cord injury centers at the time of injury. I think it should be the responsibility of the center providing care to give choices of excellence for rehabilitation so people with SCI can be sent to the rehabilitation center that is the right fit for them. On the other hand, an individual that suffered a SCI should not be limited in the amount of rehabilitation that they can receive by arbitrary capitation as predetermined by insurance companies or government payers. I have a strong belief that a person should be seen in the right rehabilitation center, with the right benefits, and to use that facility at the right time, in order to achieve best outcome,” added Berliner.
For more information about the public policies that United Spinal addressed at Roll on Capitol Hill and throughout the year, click here.
United Spinal gratefully acknowledges our 2019 Roll on Capitol Hill sponsors for their support of our members and advocates in making a positive difference in the lives of thousands of individuals living with disabilities.