Press Kit
Public Affairs Department About Our Mission & Services • United Spinal Association is a 501(c)(3) national disability rights and veterans service organization founded in 1946, providing service to thousands of members across the United States. • Approximately 700,000 Americans have spinal cord disabilities as a result of traumatic injury, multiple sclerosis, polio, amyotrophic lateral sclerosis, spina bifida or other diseases. Membership in United Spinal is free and open to any individual with these disabilities, regardless of age. • The mission of United Spinal Association is to provide expertise, create access to resources and strengthen hope, thereby enabling people with spinal cord injuries and disorders (SCI/D) to fulfill their potential as active members of their communities. United Spinal Association’s comprehensive services include: Navigating Benefit Programs––We share over 60 years of experience securing health care and sorting through the often confusing array of benefits available through state and federal agencies such as the Department of Veterans Affairs, the Social Security Administration, Medicare, and Medicaid. We may also represent our members before the Department of Veterans Affairs or the Social Security Administration in the event of claim disputes or appeals. Funding Research––Since our founding in 1946, we have provided over $52 million for spinal cord research and the education of health care professionals. Our financial support helped to launch two of the most respected spinal cord research facilities in the country at Yale University and the James J. Peters Dept. of Veterans Affairs Medical Center in the Bronx, NY. Professional Conferences––We organize and present the largest annual spinal cord disabilities conference in the US, providing state-of-the-art advances in treatments, technology, and best practices for physicians, nurses, psychologists and social workers. Advocating for Civil Rights––We drafted significant portions of the Americans With Disabilities Act (ADA), the Fair Housing Amendments Act and the Air Carrier Access Act. We pioneered accessible transit in NYC, which became a nationwide model for implementing the public bus and rail system provisions of the ADA and we continue to press for the rights of people with disabilities through state and federal legislation, the courts, grass-roots advocacy, and education. Information––Our lively monthly magazine, Action, keeps members informed of legislative and advocacy issues, upcoming adaptive sports events, personal profiles, technology information, women’s issues and activities for kids with spinal cord disabilities. We also distribute over 100,000 specialized publications, such as Disability Etiquette, every year to the general public, the media and disability organizations throughout the country explaining disability issues, veterans affairs, advocacy strategies, and safety concerns. Further, we offer a peer-reviewed medical journal available free to members of our professional associations and by subscription to the general public, The Journal of Spinal Cord Medicine. In addition, we publish Multiple Sclerosis Quarterly Report, and two open access, on-line journals, SCI Psychosocial Process, and SCI Nursing. Grants and Technical Assistance––As funding permits, we offer much-needed grants for improving the accessibility of the homes and apartments of our members with limited incomes and we also provide financial assistance for installing adaptive controls in vehicles, which can make a substantial improvement in the quality of life for our members. We also host a popular and informative web site offering candid evaluations of wheelchairs, both manual and power models, as well as reviews and specifications for a wide variety of adaptive equipment and useful advice for finding the right assistive technology. www.usatechguide.org. Training and consultation––We are the leading organization in the country for training design professionals, architects, engineers, and building inspectors on state and federal accessible building codes; last year we trained more than 4,000 professionals nationwide. We also offer a full-service consulting service for project developers that ensures any new or renovated facility––from a sports arena to a skyscraper––is fully accessible to people with disabilities. www.accessibility-services.com Keeping physically fit––Guided by the belief that the physical and psychological benefits of athletic competition are no different for people with disabilities than they are for the able-bodied, we provide a comprehensive menu of adaptive sports for all age groups. We also co-sponsor wheelchair sports teams with professional franchises such as the New York Yankees, the New Jersey Nets, the Jets and others. These teams compete nationwide in wheelchair basketball, baseball, sled hockey and quad rugby; we also develop and run numerous adaptive sports clinics for children and adults. Staying mobile––Our “Wheelchair Medic” program repairs nearly 2,300 wheelchairs annually and we offer the only program in NYC capable of doing repairs directly at an individual’s home. We also offer wide selection of power and manual wheelchairs, scooters, adaptive sports equipment, and a full line of accessories; we also ship wheelchair parts to our members nationwide. And we regularly distribute refurbished wheelchairs and other durable medical equipment to disabled adults and children in disaster areas and/or third-world countries. www.wheelchairmedic.com Making travel more accessible––With over half a century of experience helping people with spinal cord disabilities get the most out of life, United Spinal has introduced a valuable new service for our members: Able to Travel, a joint venture with Rich Worldwide Travel. We believe that people with disabilities have the same rights to a hassle-fee vacation or business trip as everyone else and our trained, professional agents can locate accessible accommodations and transportation alternatives worldwide. www.abletotravel.org Back to top For thousands of individuals with spinal cord disabilities, the road back to a full and meaningful life has been charted and paved by United Spinal Association. For 60 years we have fought for equal opportunity; we’ve funded hundreds of important research initiatives; we’ve mastered the frustrating tangles of applying for benefits programs at the state and federal level; designed and built accessible facilities in both the public and private sectors and shared our expertise with thousands of architects and designers; we’ve written historic federal legislation expanding the scope of civil rights; repaired, maintained, sold, and donated thousands of wheelchairs and other adaptive equipment; created and nurtured wheelchair sports teams and forged alliances with numerous professional franchises. And, most important of all, we’ve aggressively championed the right of all citizens with disabilities to share in the same American Dream as everyone else. Below are some highlights from our first 60 years. Highlights 1946––Public Law 663 Enacted: One of the first laws we worked for was the VA Automobile Grant, which provided funding to wartime paraplegics and amputees to buy specially adapted vehicles. The fight to have quadriplegics granted the same benefit takes six more years. 1948––Public Law 702 Enacted: Seventy of our members roll into Grand Central Station in New York City and collect signatures supporting an accessible housing bill. Days later, President Truman signs the legislation into law. 1968––Architectural Barriers Act Passed: We lobbied hard to get this legislation enacted and it marked one of the first efforts to ensure equal access to public buildings for Americans with disabilities. 1970––Jim Peters and Life magazine Expose Conditions at Bronx VA: Executive Director Jim Peters convinces editors at Life magazine to expose the deplorable condition of veteran care at the old Bronx VA Medical Center. The cover story in May causes a sensation and within a year the VA establishes a nationwide Spinal Cord Injury Service office in Washington, DC. Several years later, the old Bronx VA hospital is razed and a new facility is constructed with a special emphasis on treating SCI. 1978––Stanford Medical School Endowment: We provide a $260,000 endowment to Stanford University Medical School to establish a professorship in SCI medicine. 1985––Center of Excellence in Neurourology Created: We make a $500,000 grant to Mount Sinai Medical School to research urological complications due to SCI at the new Bronx VA Medical Center. 1986––R*A*M*P Launched: We inaugurate our Residential Accessibility Modification Program to help make member homes and apartments fully accessible. Program includes building ramps, widening doors, retrofitting bathrooms and kitchens and installing lifts and elevators. 1987––Yale Center for Neuroscience Established at West Haven VAMC: In association with the Yale University Medical School, we help create the Center for Neuroscience Regeneration Research at the West Haven, Connecticut, VAMC. 1989––Legal Action Against VA for Castle Point Conditions: We initiated a lawsuit against the Department of Veterans Affairs alleging substandard care for veterans with SCI at the Castle Point, NY, VAMC. The 1994 settlement creates Clinical Practice Guidelines, which promises to elevate SCI care throughout the VA system. 1990––Americans With Disabilities Act of 1990 Signed: President Bush signs the Americans With Disabilities Act into law. This landmark legislation protects the basic civil rights of over 43 million Americans with disabilities. We helped write a significant portion of the Act, which was largely based on a NYC law that we co-wrote. The ADA provides a clear and comprehensive national mandate for elimination of discrimination against individuals with disabilities. 1996––NYC Agrees to 100% Accessible Bus Fleet: A major advocacy program we initiated results in an agreement by New York City to make every bus and many of its subways stations wheelchair accessible. Every month, more than 30,000 riders with disabilities ride the NYC lift-equipped buses and the program becomes a “blueprint” for other US cities. 1999––Congress Adds to VA Health Care Budget: After gathering over 10,000 signatures, we hand-deliver our demands for an increased VA health care budget to Congress and lawmakers add $1.7 billion to the VA appropriation. 2004––United Spinal Association is Formed: We take a bold step into the future by significantly expanding our mission and launching a comprehensive initiative to serve the entire nation and all individuals with spinal cord disabilities. In September, the Bronx VA hospital is formally re-named the James J. Peters Veterans Affairs Medical Center in a dedication ceremony led by Senator Hilary Rodham Clinton and VA Secretary James Nicholson. This long-overdue tribute honors the memory of Jim Peters, United Spinal’s Executive Director and driving force for over 30 years.
Spinal Cord Injury
Multiple Sclerosis
Spina Bifida
Amyotrophic Lateral Sclerosis––Lou Gehrig’s Disease
Secondary Conditions
Employment and Insurance
Sources: National Spinal Cord Injury Statistical Center, University of Alabama at Birmingham; Spina Bifida Association; National MS Society; Christopher Reeve Paralysis Foundation; Russell Research––Status of Persons with Spinal Cord Injury/Disease: Highlights; The ALS Association. Clair Russell Hesselton, President Clair Russell Hesselton has served on the Board of Directors of United Spinal Association since 1993 and is a former vice president and secretary. He was elected president in early 2005. A Marine Corps veteran, Hesselton was injured in 1972 while serving with a security detail. He speaks three languages, holds a PhD on the political and historical development of Zaire, a bachelor’s degree in communications, and a six-year certificate in African development from the Universite´ Catholique de Louvain in Belgium. He’s a former creative director and executive producer for two New York advertising agencies, managed restaurants in Vermont and Lake Placid N.Y., and he’s a former chairman of the Town Board of Selectmen in Marlow, New Hampshire. In addition to being a sponsored player on the International Wheelchair Pro Tennis Tour, he’s the resident tennis professional, coach, and instructor at the Tri City Racquet Club in Latham, N.Y. He has been a veterans’ counselor with the New York State Office of Veterans Affairs, a counselor and continuing education professor at Marist College, and a personnel administrator with the New York State Office of General Services. He’s written numerous feature articles on antiques, co-authored a manuscript on diabetes and renal failure, authored and designed greeting cards from his original watercolor paintings, and created successful copy for television, radio, and print media advertisements. He’s an experienced grant writer, a master scuba diver, an avid skier and kayaker and has lectured widely on disabilities and veterans benefits. Hesselton is also a Seminole Native American. He currently lives in Altamont, New York, outside of Albany. Paul J. Tobin, Executive Director Paul J. Tobin was unanimously appointed Executive Director of United Spinal Association in June 2006. He served as Deputy Executive Director from July 2003 and was a member of the Board of Directors from 1995 to 1996. Tobin, a United States Navy veteran, oversees all strategic operations of the organization and ensures the execution of United Spinal’s mission and vision. In addition to his tour as Deputy Executive Director, Tobin has held a variety of managerial positions, including Hospital Services Officer, Director of Special Projects, and Group Director of Benefit Services. He was promoted to Associate Executive Director of Benefit Services in 1998. A Long Island native, Tobin graduated from Manhattan College with a Bachelor of Science degree in civil engineering in 1991. Upon graduation, Tobin attended the United States Navy Officer Candidate School in Newport, Rhode Island, from which he was commissioned an ensign in November, 1991 and joined the Civil Engineering Officer Corps. With the CEC, Tobin was stationed at the Naval Training Center in Orlando, Florida and the Naval Air Warfare Center in Lakehurst, New Jersey. After sustaining a spinal cord injury in August of 1993, Tobin underwent rehabilitation at the Castle Point (NY) Veterans Affairs Medical Center. Tobin has also pursued a Masters degree in Public Health Administration at Columbia University. Tobin stresses the tradition of service that is the legacy of United Spinal Association and, as Executive Director, urges our membership and individuals with disabilities everywhere to “continually challenge the limitations imposed by attitudes, medical technology, society, and government.” He and his wife Lorraine live in Staten Island, NY, with their son, Connor. |
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