The Christopher and Dana Reeve Foundation held its first summit in Washington, DC in late February.
The conference brought together people with SCI/D, advocates, researchers, health professionals, family members, caregivers and other stakeholders for two days of workshops, briefings, and presentations about living with SCI/D, the state of research, and information on initiatives of the Reeve Foundation and Paralysis Resource Center (PRC). The work of the Foundation, the PRC and the conference are supported through the Administration on Community Living (ACL) at the Department of Health and Human Services (HHS).
Keynote speakers included Julie Hocker, ACL Commissioner and nominee to head the Department of Labor’s Office of Disability Employment Policy (ODEP), disability rights advocate Emily Ladau, former Senator Tom Harkin, and co-anchor of ABC’s Good Morning America Robin Roberts. In her remarks, Hocker described some of the work ACL has undertaken to change the medical model mindset of the health care community and its challenge grants program to highlight best practices in employment of people with disabilities. Ladau spoke of her efforts to be a self-advocate for accessibility and the value of collaboration rather than confrontation when she encountered disability-barriers in businesses. Sen. Harkin reflected on the work to gain passage of the Americans with Disabilities Act, the progress that has been achieved in its 30-year lifespan, as well as the challenges that remain to fulfill the goal of economic self-sufficiency embodied in the law.
Break-out sessions included presentations on “Building Resilience through Self-Advocacy,” “State of Spinal Cord Injury Research,” “Finding a Good Caregiver,” information about the Reeve Foundation Quality of Life Grants program, preparing for emergencies, and making travel less stressful. At a session on Reeve Foundation advocacy priorities, representatives of the organization reported on their ongoing work to ensure access to insurance coverage for treatments, devices, and rehabilitation for those with paralysis and coalition efforts with organizations such as PVA and others to protect the rights of air travelers with disabilities.
Another session on women living with SCI/D featured Elizabeth Leef, Program Specialist at ACL; Jennifer Sheehy, Acting Assistant Secretary for ODEP; writer and founder of the Great Scuba Adventure, Cody Unser; and Bernadette Mauro, Director at the Reeve Foundation and manager of its Military and Veterans Program. Each woman shared her experiences living with SCI/D, barriers she encountered and solutions she found most effective in overcoming those challenges. A common thread in their comments were ongoing problems in accessing health care from parking and access to health clinics, inaccessible exam tables, and doctors’ lack of understanding physical manifestations of their condition.
Through its Paralysis Resource Center – https://www.christopherreeve.org/living-with-paralysis/about-the-paralysis-resource-center – the Reeve Foundation offers a 400 page resource guide – https://www.christopherreeve.org/living-with-paralysis/free-resources-and-downloads/paralysis-resource-guide – covering a range of topics from SCI/D treatment modalities and therapies, health and wellness tips, information about peer and family supports, rehabilitation professionals, recreation, travel advice, tools and technology, useful resources and basics on disability rights.
One chapter in the guide is devoted to the Reeve Foundation’s Military and Veterans Program, a description of the Military Veterans Program Council and lists of Departments of Defense, VA, and caregiver resources.