United Spinal Association: Life Where It’s Lived

United Spinal Association’s (www.unitedspinal.org) mission is to improve the quality of life for everyone with a spinal cord injury or disease (SCI/D). The association believes that even with a spinal cord injury or disease, a full, productive and rewarding life is within the reach of anyone with the strength to believe it and the courage to make it happen.

United Spinal started out in 1946 as a support/advocacy group for WWII veterans with paralysis in New York City, who were advocating for civil rights and independence for themselves and their fellow veterans. Since then, the association has grown into the largest nonprofit organization dedicated to helping people living with SCI/D. They are committed to providing active-lifestyle information, peer support and advocacy that empower people to reach their highest potential: professionally, personally and socially, and to ensuring that the built environment doesn’t stand in their way.

In the Roll on Capitol Hill (June 16-19, 2013), United Spinal’s annual legislative advocacy event, members of National Spinal Cord Injury Association, United Spinal Association’s Public Policy team, UsersFirst Advocates and others converge on Washington, DC, to speak directly with legislators whose decisions affect members’ daily independence and quality of life. This year’s fight focuses on ensuring greater access to durable medical equipment and related services; prescription drugs and outpatient therapy; quality health care and community supports and services; competitive integrated employment opportunities; the preservation of disability benefits under Social Security; and civil rights protections.

United Spinal programs

United Spinal’s programs and services enable people living with SCI/D to pursue rewarding careers. They give members the opportunity to discover new hobbies, get more involved in their communities and, for those so inclined, to challenge the status quo through self-advocacy.

  • Travel made easy. Able to Travel addresses the barriers that can keep travelers with disabilities from getting where they want to go. The program meets all the accessibility needs of business and leisure travelers with disabilities, including air travel, transportation, cruises, tours and excursions, hotel accommodations and access to vital medical equipment.
  • Centralizing resources. Spinal Cord Central offers useful resources and an extensive e-library for people with SCI/D, their families and friends, health care professionals, direct service providers and businesses. Visitors can browse on their own or ask for help from information specialists, who understand living with SCI/D and will help them find the resources and solutions they need.
  • Push for more! Government and health insurance company restrictions have too often kept people with disabilities from obtaining the equipment they need. One of United Spinal’s newest programs, Users First, advocates for better access to seating and mobility equipment and rejects the traditional one-size-fits-all approach. UsersFirst ensures people with disabilities have access to equipment that’s right for them.
  • Serving America’s veterans. The VetsFirst program is committed to helping all generations of veterans — including those with post-traumatic stress disorder and traumatic brain injury — and their family members obtain the benefits and services they need and deserve. VetsFirst’s network of National Service Officers provides free assistance, resources and representation for veterans navigating the VA claims process. The program’s call center and online help desk connects with over 2,000 veterans annually. Staff tackles each case individually, taking the time to discuss self-help tips and answer questions on military separation, claims appeals and state benefits.
  • Bringing you up to code. United Spinal’s Accessibility-Services program ensures that the built environment is accessible to all, including those using wheelchairs, canes, walkers and scooters. Our certified specialists, plan examiners, attorneys, architects and code enforcement officials maintain the highest accessibility standards as key consultants on projects such as arenas, sports venues, museums, residential projects and concert halls.
  • It’s all about choices. USA Techguide, United Spinal’s Web hub, shares information on the latest wheelchairs, mobility scooters and assistive technology. The hub has over 50,000 visitors a month and for many of them, the hub is their first stop in buying gear. Online visitors read and submit reviews on wheelchairs, mobility scooters, cushions and standing devices, as well as search for all types of assistive equipment.
  • Ask us. Ask Us enables members and others with disabilities to ask questions using a fast and simple online form. Serving over 5,500 individuals annually, Ask Us makes it easy to obtain information and guidance without having to search the web or make phone calls. Unlike other online support desks that offer automated, knowledgeable staff members are the driving force behind the program, offering timely feedback on disability-related issues.

Community and education

United Spinal helps thousands of wheelchair-users, veterans and people with multiple sclerosis and other spinal cord disorders overcome the daily challenges of living with a disability, as well as extending support to family members and caregivers. After Hurricane Katrina, United Spinal staff stocked an accessible bus with 32 wheelchairs, two hospital beds, a Hoyer lift, and other mobility equipment. They drove it to New Orleans and donated it to a local independent living center that was out of supplies and needed transportation.

The group’s 36,000 members include people of all ages and backgrounds who are driven, independent, and active participants: paralympians, wounded warriors, talented artists, kids with big dreams, proud parents, empowered women, self-advocates, heroes, survivors and accomplished professionals.

The National Spinal Cord Injury Association (NSCIA) is the membership arm of the organization. NSCIA has more than 60 local chapters and support groups nationwide, connecting people with SCI/D to their peers and fostering an expansive grassroots network. The membership program is a lifeline for many people working to regain their independence and live happier lives, whether they are leaving rehab after a spinal cord injury, living with a spinal cord disorder or have spent years of frustration coping with disability.

NSCIA provides guidance and resources on crucial issues, such as employment, affordable housing, transportation, health care, home- and community-based independent living, education, peer support, and leisure and recreation.

Membership is also open to medical and nonmedical professionals, product and service providers, public policy makers and others who are interested in the issues affecting people with SCI/D.

United Spinal has donated more than $52 million for spinal cord research and helped launch Yale University’s Medical School’s Center for Neuroscience and Regeneration Research. Led by dedicated scientists from around the world, the Yale Center continues to improve the treatment and work on a cure for spinal cord injury and disease.

Public policy

The United Spinal Association promotes public policies that advance civil rights and independence for people with disabilities. From the beginning, the association has advocated for people living with SCI/D through state and federal legislation and accessibility litigation in the courts.

United Spinal has written federal legislation critical to the livelihood of people with disabilities, including parts of the Americans with Disabilities Act. Since the ADA’s 1990 enactment, United Spinal has been working to ensure that the promises of the law are kept. Its public policy initiatives also focus on expanding education and employment, ensuring access to public transportation and taxi services, and amending Medicare rules that restrict many individuals to nursing facilities.

Education & awareness

Disability awareness has always been an integral part of United Spinal’s mission and culture. The association works to raise public awareness of often-overlooked disability issues, sharing news and information on key initiatives, life-enhancing events and inspirational members with print and web media outlets nationwide. United Spinal promotes its mission through its websites, social media pages, press releases, magazines and informative publications, events and instructional sessions, public service announcements and e-mail alerts. But the greatest asset in spreading the word has always been United Spinal’s members and supporters.

United Spinal publishes the magazine New Mobility, which is widely recognized as the premier wheelchair lifestyle publication in the world. It focuses on the issues that matter most — jobs, money, love and sex, sports and more. New Mobility has won many awards, including a 2006 Independent Press Award from Utne Reader; a Maggie for best buyer’s guide from the Western Publications Association; an Ozzie for best redesign from Folio: magazine; a DREAM (Disability Rights in Entertainment, Arts & Media) award from the Disability Rights Legal Center; and several EDI awards for Equality, Dignity and Independence from Easter Seals.

Looking ahead

United Spinal is following the rollout of health care reform carefully. The first of three planned webinars about health care reform, “Health Care Reform’s Impact on People with Disabilities: The Road Ahead,” was January 30. Barbara Kornblau delivered a clear and concise account of the Affordable Care Act’s current status and the implications for people with disabilities. United Spinal is sponsoring two additional webinars: “Access to the Medical Equipment You Need” on March 28 and “What You Need to Know About Medicaid” on May 23.

According to Weisman, “People with disabilities, especially NSCIA members, need improved access to rehabilitation and durable medical equipment (DME). Unfortunately, DME issues are going to remain a problem for those who need complex rehab technology regardless of healthcare reform. People should be on the alert for changes in their insurance coverage, stay in contact with their companies and look for ‘navigator’ and ‘client-assistance’ programs being set up pursuant to health care reform mandates. Use these navigators to learn about your coverage. Get in touch with advocacy groups, like ours, when confronted with DME denials. ‘One size does not fit all’ has to be our guiding principle.”