News from NSCIA

Member Launches Crowdfunding Campaign
Kesha Pilot, a 27 year-old Arkansas member and disability advocate, has launched an online crowdfunding campaign to raise money for the 3rd Annual Roll on Capitol Hill.

SavewheelHer Save the Wheelchair campaign aims to raise $15,000 for the legislative advocacy event hosted by United Spinal Association, NSCIA’s parent organization. Roll on Capitol Hill, held June 22-25 this year, addresses issues that impact the health, independence and quality of life of individuals living with spinal cord injury and disorders.

This year advocates will call for, among other issues, passage of HR 492/S. 948, Ensuring Access To Quality Complex Rehabilitation Technology Act of 2013, a bill to establish a benefit to ensure that people with spinal cord injuries and disorders have access to complex rehab technology.

Funds from Pilot’s campaign will cover a portion of the travel, transportation and lodging expenses of the wheelchair users and disability advocates attending ROCH.

Two years ago, just as Pilot was experiencing the joys of being a new mom, she was in a car crash that left her paralyzed from the chest down. Since her injury, she has worked to improve access and create opportunities for people who live with SCI/D and rely on wheelchairs. “Having access to a wheelchair that works for me has enabled me to regain my independence, and at the same time, take on all responsibilities life throws my way, big or small … But many other people living with spinal cord injuries are not as fortunate,” explains Pilot.

Pilot is now on a mission to ensure others have access to necessary customized wheelchairs and mobility equipment so they can live independent and productive lives.

At the top of her agenda is advocating for greater access to complex rehab technology. “I want to build relationships with legislators and work towards finding solutions that help people in chairs out. Having an established group like United Spinal behind me gives me even more credibility,” adds Pilot.

The Save the Wheelchair campaign will run through mid-May. To make a donation in support the Save the Wheelchair campaign, visit igg.me/at/save-the-wheelchair. You can follow the campaign on Facebook: www.facebook.com/savethewheelchair and Twitter: twitter.com/Save_Wheelchair. Help spread the word by using the Hashtag: #savethewheelchair.

United Spinal Introduces Urology Coalition
United Spinal Association recently launched the Urology Coalition to help achieve high quality healthcare for people with disabilities, which will lead to improved health outcomes and increased independence.

The Urology Coalition consists of urological medical technology suppliers and manufacturers, consumer and disability advocates, as well as clinician and physician groups. Its mission is to fight for better consumer access to medical supplies under Medicare, Medicaid and private insurance. It will also closely monitor the Centers for Medicare and Medicaid Services’ DMEPOS Competitive Bidding Program and lobby against expansion of the program to include urological supplies.

Some of the Urology Coalition’s objectives for 2014 include creating a clinical consensus statement on the issues of self-management protocols and improved documentation and standards of care; crafting an issue paper and education materials for use on Capitol Hill and with the Centers for Medicare and Medicaid Services by coalition members and consumer and disability advocates; and developing an educational campaign for the consumer and disability, clinician and physician communities through webinar presentations, articles posted in medical trade and consumer publications as well as national and local media.

For more information, including a list of coalition members, go to www.unitedspinal.org/united-spinal-launches-urology-coalition.

Strengthening SCI/D Peer Support Nationwide
United Spinal Association and The Buoniconti Fund recently teamed up to create a national network of peer support groups called the “Spinal Network” to set higher standards in assisting people living with spinal cord injuries and disorders.

Over 65 support groups across the country have received funding through grants from The Spinal Network for their commitment to improve the lives of people with SCI/D. They are using the grants in a variety of exciting ways, from raising public awareness of SCI/D and hosting valuable events and social outings to arranging transportation for new members to attend group meetings and inviting knowledgeable guest speakers to talk to their groups about overcoming the challenges of living with a disability.

The goal of the Spinal Network is to ensure more peer support groups in cities and towns across the United States are connected to the very best resources to help people with SCI/D maintain independent and active lifestyles. “The Spinal Network partnership between United Spinal, its NSCIA chapters, and the Buoniconti Fund, allows us to coordinate efforts at the grassroots level, and build a much needed national network of peer group support,” says Joe Gaskins, United Spinal’s president and CEO.

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