United Spinal Association and over 150 wheelchair users, clinicians, partners and disability advocates from 35 states, gathered in Washington, D.C. on June 11-14 for the 6th Annual Roll on Capitol Hill to discuss improving disability policies with key congressional leaders.
Roll on Capitol Hill is United Spinal Association’s annual signature policy event that highlights advocacy priorities for its membership and the broader disability community to ensure wheelchair users and all people with disabilities are included in policy debates impacting their health, independence, and quality of life.
“With a new administration, we face both challenges and opportunities on a range of public policy issues from civil rights to healthcare and community living to transportation and employment,” said James Weisman, United Spinal Association’s president and CEO.
“We must ensure that our rights, access to healthcare and appropriate equipment and independence are not diminished,” added Weisman.
“While every issue seems to have a partisan spin, people with disabilities have traditionally enjoyed bipartisan interest in their issues. We’re here to tell policymakers from boith sides of the aisle about our populations’ needs, articulate our rights, and request their support,” stated Weisman.
During Roll on Capitol Hill, attendees took part in over 200 Congressional office visits, meeting face-to-face with their representatives and other key legislators to personally discuss their unique challenges living with a disability and to advocate for:
- Protection of health care benefits and services for the Spinal Cord Injury & Disease (SCI/D) community, such as pushing back against all efforts to remove our community’s consumer protections for health care coverage, and pre-existing conditions, including fighting back against Medicaid cuts and fighting to preserve coverage for habilitation and rehabilitation services and devices
- Improved access to complex rehab technology that our community and wheelchair users rely on to live active and healthy lifestyles.
- Ensuring people with disabilities and wheelchair users are not barred from entering public accommodations at the federal and state levels.
- Strengthening the provision of home- and community-based services and supports so that individuals can live and participate in their communities.
- Enhancing employment services for disabled veterans utilizing Department of Veterans Affairs’ (VA) vocational rehabilitation and employment benefits program.
- Supporting VA accountability legislation which would enable VA to manage workforce issues effectively to improve healthcare access.
Roll on Capitol Hill attendees, many of whom have joined United Spinal in DC for consecutive years, praised the event’s value in empowering indviduals living with disabilities to advocate for improved rights and become leaders within their communities.
“Even if I only improve the life of one individual it is worth it. Roll on Capitol Hill gives me my voice back,” said Earl Powdrell, 64, an aerospace engineer, brain stem stroke survivor, and United Spinal member from Texas.
“Roll on Capitol Hill has given me the skills to go to any state and sit with an official, not only to share my perspectives, but build a solution through positive dialogue,” added Andrea Dalzell, 29, MS. Wheelchair New York 2015 who is currently pursuing a degree in Nursing.
On June 12, Roll on Capitol Hill attendees participated in a full day of policy briefings from advocates, agency officials and Capitol Hill staffers that focused on pertinent legislative issues impacting the disability community.
United Spinal’s policy team kicked off the day with an advocacy training session to provide attendees insight on how to perform a successful Capitol Hill visit with their congressional representatives. The main takeaway was for advocates to share their personal stories to demonstrate how specific legislation impacts their life.
“Just sharing your story in person can have an enormous impact on Congressional staffers and representatives,” said Alex Bennewith, MPA, Vice President, Government Relations at United Spinal.
“Having the opportunity to meet face-to-face with your representatives to describe, for instance, why certain wheelchairs are vital to joining the workforce or how the lack of long-term services and supports interferes with your ability to be a part of your community, really helps get your point across,” she added.
Other presenters included Cindy Cai, PhD, Co-Project Director, MSKTC Model Systems Knowledge Translation Center (MSKTC), who discussed the work of the Center to meet the needs of individuals with spinal cord injury and other conditions. MSKTC works closely with researchers in the 14 Spinal Cord Injury (SCI) Model Systems to develop resources for people living with SCI and their supporters.
A panel discussion on technology, transportation and empoyment supports was led by officials from the Office of Disability Employment Policy, Department of Labor, including Deputy Assistant Secretary Jennifer Sheehy.
Don Clayback, Executive Director, National Coalition for Assistive and Rehab Technology (CRT) provided an update on Complex Rehab Technology (CRT) legislation along with Jose Hernandez, Program Specialist, United Spinal Association and Rick Hayden, President, United Spinal’s Southern California Chapter. CRT, or medically necessary individually configured manual and power wheelchair systems, adaptive seating systems, alternative positioning systems, and other mobility devices is used by individuals with disabilities and chronic conditions, who have medical conditions significantly different from those experienced by the traditional elderly population in Medicare.
Stephanie Woodward, Esq. Director of Advocacy, Center for Disability Rights offered attendees suggestions on how they could help promote the passage of the Disability Integration Act, which protects the individual’s right to a real choice in how and where people with disabilities receive long-term services and supports and Gina Schuh, advocate from Arizona, updated attendees on how to fight back against threats to the Americans with Disabilities Act.
United Spinal’s VetsFirst program also held an additional component to the Roll to address issues facing the community of veterans living with disabilities, which the organization has served since it’s founding in 1946. Educational sessions highlighted accountability at the Department of Veterans Affairs and vocational rehabilitation opportunities.
On the evening of June 13, United Spinal hosted a Congressional Awards Reception to recognize members of Congress for their outstanding service to people with disabilities and veterans, including:
- Sen. Elizabeth Warren (D-MA) – 2017 James J. Peters Disability Rights Champion Award for her for her leadership role in advocating for the needs and rights of people with disabilities.
- Rep. Phil Roe (R-TN) – 2017 VetsFirst Congressional Bronze Star Award for his leadership in championing accountability at the U.S Department of Veterans Affairs on behalf of all veterans to ensure they receive the benefits and services they have earned.
- Rep. Lee Zeldin (R-NY) – 2017 Junius A. Kellogg Congressional Outstanding Leadership Award for his commitment and dedication in advancing the quality of life of people with disabilities as it relates to CRT.
“Your advocacy on complex rehab technology and personal stories about how your wheelchair empowers you to live needs to be told to every member of the House of Representatives and Senate,” said Zeldin.
“I am proud to be fighting alongside all of you for policies like the Disability Integration Act and those that address other disability issues. I want to express my gratitude for the work you’ve done today and every day. Hearing your stories is incredibly important,” said Warren in a prepared statement.
United Spinal also honored disability advocates who have shown advocacy leadership and dedication to, and success in, state and/or federal policy issue or issues impacting the SCI/D or broader disability community. This year Frances M. Ozur Cole, President, United Spinal’s New Mexico Chapter received the 2017 Finn Bullers Advocate of the Year Award and Jenn Wolff, formerly United Spinal’s Advocacy Alliance Manager, received the 2017 Grassroots Advocacy Award for their dedicated work to ensure the full integration, independence, and civil rights of people with disabilities.
For more information about the public policies that United Spinal addresses at Roll on Capitol Hill and throughout the year, please visit unitedspinal.org/action-center/policy-priorities/, vetsfirst.org/core-beliefs/.
United Spinal gratefully acknowledges our 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.