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 United Spinal Association’s membership division National Spinal Cord Injury Association (NSCIA), is hosting an on-line auction of the “Healing Harp”–a world class Grand Concert Harp built by George Flores — a master harp builder/technician and wheelchair user.
Auction proceeds will benefit people living with spinal cord injuries and disorders (SCI/D) nationwide.
The auction, which will run from March 12-22, was officially announced on February 18 at NSCIA’s Dinner with Friends, at The Lexington House in Hickory Hills, IL (south Chicago suburbs).
Access the harp auction on Ebay (March 12-22).
World renowned professional harpist Merry Miller performed on the Healing Harp and George Flores was on hand to mark the occasion.
Check out the video of Merry’s performance of “It’s a Wonderful World” here.
Flores, an NSCIA member who was paralyzed in a motorcycle accident in 2004, created his 47-string harp with the aid of a stand-up wheelchair that allowed him to build, calibrate, and tune at the highest places of this tall symphonic instrument.
“I thought about the fact that harps are known around the world as being a healing instrument. I thought this would be a great opportunity to bring that same healing power to the world and all people with disabilities, including people with spinal cord injuries and disorders,” said Flores who built the harp with the support of the Venus Harp Company, a world leader in harp manufacturing.
Flores chose NSCIA as the beneficiary of his labor of love due to their support in navigating doctors and helping him successfully advocate for a stand-up wheelchair during his rehabilitation, as well as their ability to help others lead full and independent lives with spinal cord injury or disorder.
“This gift is clearly the most creative and unique donation we have received in our 65 plus year history,” said K. Eric Larson, United Spinal Senior Vice President of Membership and Chapter Services.
“The funds generated through this auction will directly support our mission of enabling people living with spinal cord injury and disease (like George Flores) to achieve the highest possible quality of life,” he added.
The custom-built Venus Aria model Grand Concert Harp in natural finish with hand painted soundboard and handpicked special veneers has a new technology no other harp in the world has, which was implemented in this particular harp. The technology strengthens the overall structure and enhances the acoustic properties of the wood. The Healing Harp is valued at $40,000.
For more information visit www.spinalcord.org/the-healing-harp-auction/.
United Spinal Association’s general counsel Jim Weisman will be featured in a documentary film project entitled “When I Walk” created by Jason DaSilva, a filmmaker chronicling his experience living with primary-progressive MS.
A short clip which includes footage of Jim discussing wheelchair accessible taxis was used in this New York Observer article.
Since graduating from Seton Hall University Law School, Jim has represented disabled people and organizations of disabled people in order to enhance the quality of their lives and to protect and promote their civil rights.
For over 30 years, he has been general counsel for United Spinal Association, where he provides legal assistance in all of their endeavors. In July 1995, he became a founding member of the Board of Directors of the American Association of People with Disabilities and in 2003 was elected Chairman of the Board.
He was key negotiator with members of Congress in drafting and supporting the passage of the Americans with Disabilities Act (ADA).
To learn more about this film project and how you can support it, please visit at www.wheniwalk.com.
At United Spinal Association, we consider every month to be Multiple Sclerosis (MS) Education and Awareness Month. But in the spirit of the MS Foundation’s annual effort to promote a greater understanding of MS, we thought we’d offer members easy access to our recent coverage of MS-specific health, lifestyle, research and opinion in our new bi-monthly membership publication Life in Action.
These links will take you directly to the relevant pages in our digital edition, where you can enlarge the articles by simply clicking on them.
January/February 2012 Issue
Creative Transfers: Tips for a changing body.
MS and Life Insurance: Can you get it?
MS Life: Fitness tips, research news, garden coaching, a Spanish-English resource, and a perspective on when MS runs in the family.
MS Minus the Waterworks:The Interstim implant for bladder control.
Riddle of the Sphinx … MS Style! (Cartoon)
November/December 2011 Issue
Tinkering with MS Theories: What if the Problem is in the Plumbing? Possible implications of chronic cerebrospinal venous insufficiency (CCSVI).
MS Life: A new low-vision product, the Swank Diet, assistive tech experiences, research news, and a perspective on secondary-progressive MS.
September/October 2011 Issue
MS Life: The Baclofen pump, exercise tips, transferring advice, research news, and a perspective on the transition to scooter.
July/August 2011 Issue
Yoga for MS Relief: Research and personal experience.
Seated Yoga: Pose Instructions
Gym Chains: An exercise fan with MS reviews Bally Total Fitness.
MS Life: Fighting fatigue, mindfulness meditation, home access, research news, and a perspective on swimming with dolphins.
Travel: Cruising with MS.
United Spinal Association’s free webinar series empowers advocates to address concerns of disability community at “Roll on Capitol Hill” in Washington, DC this June.
When it comes to impacting our government and legislation, it’s easy to feel powerless and disconnected.
If you think some politicians do not truly understand the daily challenges you face living with a disability, you’re not alone. Are you frustrated because you have a shabby wheelchair that prevents you from living an active and healthy lifestyle? Do current community services and supports fail to address your needs?
Don’t let your health and independence be threatened without a fight.
United Spinal Association’s Public Policy department is hosting a free webinar series providing resources and strategies so you can join our national effort to change policies that affect the disability community. There are many roads to empowerment and making a difference, whether it’s through self-advocacy, community activism, cutting through red tape, or simply understanding legislative lingo and how it pertains to you.
The idea for the webinar series came while planning our upcoming advocacy event in Washington, June 25-26, called Roll on Capitol Hill. This important gathering brings disability leaders from United Spinal Association and its membership division NSCIA to Capitol Hill to create an army of informed, educated advocates that can achieve the changes most sought after by the disability community.
The webinars play a key role in preparing consumer advocates for the Roll on Capitol Hill and with the feedback we receive from webinar participants, we are able to hone in on issues that directly impact the health, independence and quality of life of the people we serve. Your feedback equips our staff with real world experiences, allowing us to bring your specific concerns to Capitol Hill in June, so we can begin addressing them with legislators and policymakers.
Our first webinar took place in January. It highlighted proposed cuts to the Medicaid program at the federal level and how they will endanger critical services and supports from coast-to-coast. If you were unable to attend you can view it here.
Joe Isaacs, United Spinal’s VP of Public Policy was pleased with the turnout for the first webinar. “It shows that many individuals are eager to get off the sidelines and into the fight,” says Isaacs.
“We received many excellent questions from attendees and were gratified by the many compliments that were conveyed about the program’s exceptional value and clarity. Since then, we have responded to each and every question from participants whose insights have further edified our staff’s thinking on policy matters. A real win-win result,” adds Isaacs.
Mark your calendar for our remaining webinars in preparation for Roll on Capitol Hill:
• March 29 – “Eliminating Medicare Restrictions to Essential Services and Equipment: What Can You Do?”
• May 24 – “Disabled and Seeking Employment – Is the government helping you adequately?”
Tom Scott
Web Editor
Medicaid is a lifeline for 9 million Americans with disabilities. Although only 15 percent of Medicaid beneficiaries are people with disabilities, they consume 43 percent of overall Medicaid spending.
For these individuals, Medicaid is the primary public source of funding for long-term services and supports, whether provided in nursing or intermediate care facilities, as home and community-based services or as home health and personal care.
Disability advocates must therefore remain vigilant in opposing efforts that would reduce Medicaid funding, benefits and eligibility, especially at a time when more Americans are experiencing heightened financial challenges and coverage loss in the face of our nation’s economic plight.
Recently, national policymakers have proposed spending caps, fixed federal block grants and other changes that would significantly reduce federal support of Medicaid. These proposals would shift more costs to states, health care providers and beneficiaries least able to absorb them. Dozens of states struggling with their own budgets have already made cuts to provider payments and “optional” benefits important to those with disabilities The changes proposed by some members of Congress will only make matters worse and jeopardize needed services so critical to enabling those with disabilities to maintain daily function and live quality lives.
In this first of three webinars leading to the United Spinal Association’s “Roll on Capitol Hill” public policy conference and advocacy day in Washington, DC on June 25-26, 2012, we discussed: (1) the importance of Medicaid to those with disabilities; (2) the threats the program continues to face amid fiscal challenges; and (3) the messages that must be sent to policymakers to promote changes that improve quality and efficiency of care without diminishing needed services and supports.
Download PDF of the webinar.
View Transcript of the webinar.
 United Spinal’s general counsel, James Weisman, speaks about the cost savings accessible taxis will bring. In late December 2011, Federal District Court Judge for the Southern District of New York, George Daniels issued an order requiring that all street hail permits issued for livery vehicles (in the four boroughs other than Manhattan) will have to be only for accessible vehicles until the City submits a plan to the Judge, which is approved by the Judge and provides “meaningful access” to the livery and yellow cab systems. Moreover, new medallions must be accessible for the yellow cab system which operates in Manhattan.
Several days prior to the issuance of Judge Daniel’s decision Governor Cuomo orchestrated an amendment to a bill which would have allowed the City to issue 2,000 new medallions and raise $1 billion in new revenue. It required all new yellow medallions to be accessible, gave 18,000 of 30,000 livery vehicles the right to purchase street hail permits, provided 20 percent of those permits were for accessible vehicles (these vehicles can be dispatched or hailed unlike yellow cabs which must be hailed). The Governor also required that a plan be developed within a year from the signing of the law, which must be approved by the NYS Department of Transportation, to provide wheelchair access to the City’s taxi system including yellows and liveries.
The City requested that the Judge stay his order pending the outcome of their planned appeal to the US Court of Appeals. Judge Daniels refused to stay the order because it would have permitted the continuation of, what he declared to be, a discriminatory practice in violation of the Americans with Disabilities Act (ADA).
The City appealed both the Judge’s order and the denial of the stay. The appeal of the denial of the stay was argued by Michael Cardozo, the City’s Corporation Counsel. Sid Wolinsky, of Disability Rights Advocates of Berkeley, California, argued on behalf United Spinal. The City conceded that they had no plans to sell either street hail permits for the livery vehicles or new medallions before June 2012.
The Second Circuit Court of Appeals, sitting in Manhattan decided to not stay the Judge’s order but instead to expedite the appeal. Since the City would not be issuing street hail permits for livery cars until June or issuing new medallions until July, Judge Daniel’s injunction remains in place, i.e. new medallions must be accessible and new street hail permits for liveries can only be on accessible cars. The expedited appeal will require briefing to be completed by both parties by the end of March and the appeal to be heard in early April.
We got a Christmas present from Judge Daniel’s in December and hope to receive an Easter present from a three judge panel at the U.S. Court of Appeals.
Meanwhile in Albany, Governor Cuomo has signed the momentous legislation negotiated last December which requires 2,000 new medallions to be placed on accessible yellow cabs and at least 20 percent of street hail liveries to be accessible. Regardless of the City’s success at the Court of Appeals, accessible taxis will become a reality in NYC starting sometime this summer.
James Weisman
General Counsel
United Spinal Association
Check out our Accessibility News Archives for more on this issue and others.
 United Spinal Association’s Accessibility Services program is teaming up with Cornell University’s Northeast ADA Center to host free Americans with Disabilities Act (ADA) training webinars.
In conjunction with the Northeast ADA Center, Accessibility Services will host four live, instructor-led on-line programs that will provide attendees with an overview of the 2010 ADA Standards for Accessible Design.
The webinars focus on the areas where accessibility requirements found in the 2010 Building Code of New York State, New Jersey, Puerto Rico, and the Virgin Islands differ from federal accessibility requirements.
They will highlight the effective dates for the new regulations to ensure that design and building professionals are aware of their obligations under the law. The differences between the 1991 ADAAG and the newly release 2010 ADA Standards for Accessible Design will also be covered.
“United Spinal is a national expert on both local and national accessibility codes. As the Northeast ADA Center is responsible for implementing all parts of the Americans with Disabilities Act, we have expertise in broad application issues for this federal law, as it applies to all titles of the ADA. Partnership with United Spinal allows us to provide ADA Stakeholders in Federal Region II with in-depth analysis of building code issues and how they impact local areas,” says Wendy Strobel Gower, project director for the Northeast ADA Center.
“We hope that the webinar series will help design and building professionals to begin the conversation about accessible design,” adds Gower.
Webinar Dates:
New York State Building Codes–March 9, 1pm-3pm EST (Click Here For Details)
New Jersey Building Codes–March 16, 1pm-3pm EST (Click Here For Details)
Puerto Rico Building Codes–March 23, 1pm-3pm EST (Click Here For Details)
Virgin Islands Building Codes–March 30, 1pm-3pm EST (Click Here For Details)
Who would benefit from these webinars?
• Architects
• Building owners
• Municipal managers
• ADA coordinators
• Disability advocates
• Anyone charged with determining if the built environment complies with ADA Accessibility Requirements.
The webinars will be led by Jennifer Perry, Compliance Specialist at Accessibility Services who has been with the organization since 1998.
Perry’s job is to provide plan review services for accessibility compliance and perform accessibility site assessments to ensure compliance with state and/or federal accessibility requirements. She is an important part of the team of professionals, including certified accessibility specialists, plan examiners, attorneys, architects and code enforcement officials that make Accessibility Services so successful at what they do. Its mission is to exclusively make our built environment accessible and increase awareness about accessibility issues commonly encountered by individuals with disabilities across the country.
For registration, disability accommodations, materials request or any other inquiries related to this event, please click here or contact Katie Steigerwalt at 607.255.8660 or 800.949.4232 or via email at kms342@cornell.edu.
 United Spinal Association’s UsersFirst program recently launched Mobility Map, the only web-based tool of its kind to help consumers navigate the often confusing and complicated process of purchasing the proper wheelchair and mobility equipment.
The Mobility Map provides people with disabilities guidance in getting wheelchairs and other mobility equipment that meets their unique needs. It offers tips on identifying your “wheelchair team” such as physicians and medical equipment suppliers, how to obtain a wheelchair evaluation, and where to find funding.
The easy-to-read map will run timely information about specific policies and legislative issues, as well as provide a forum to take action. It will also feature feedback opportunities on each page so that content can continue to meet the needs of the user.
“The UsersFirst program brings together the voices of consumers, clinicians and wheelchair suppliers while focusing on the empowerment of the consumer,” said UsersFirst executive director Ann Eubank.
“The Mobility Map will play a big role in empowering the consumer because it guides and educates them through the entire service delivery process of seating and wheeled mobility–so that they can take charge in choosing the best equipment to meet their needs,” Eubank added.
As one of United Spinal Association’s newest programs, UsersFirst advocates for greater access to appropriate wheelchairs, mobility scooters and seating systems for people with disabilities.
For more information, please visit www.usersfirst.org.
United Spinal Association’s Able to Travel program showcased its expertise in booking accessible vacations and business trips during the Abilities Expo–which took place February 17-19–in Atlanta, Georgia.
Able to Travel hosted a workshop during Saturday’s Expo festivities, guiding attendees through the process of planning an accessible trip.
During the workshop, Mary Peterson, CTC, who works as Able to Travel’s accessible travel consultant, explained the ins and outs of the Air Carrier Access Act which prohibits commercial airlines from discriminating against passengers with disabilities.
She also delved into the 2010 ADA Standards–federal regulations responsible for increasing accessibility to hotels and other travel destinations.
 Mary Peterson, accessible travel consultant for Able to Travel offers tips to travelers with disabilities during her presentation at the Abilities Expo-Atlanta. Further, Peterson offered up some helpful tips, including info on how to prepare for airport security checkpoints and highlighted important mandates from the Transportation Security Administration (TSA) to be aware of.
“I really enjoy attending the Abilities shows. It gives me the opportunity to help many travelers that have had difficulty planning accessible trips in the past. It feels great to be able to change their perspective on traveling with a disability, especially if they use a wheelchair or have other mobility concerns,” Peterson says.
“It’s also exciting to get a chance to meet past clients in person. Many are so appreciative of the support Able to Travel has offered over the years. And that makes my job so worth it,” she adds.
Much of the material Peterson presented can be found in United Spinal Association’s highly informative booklet on accessible air travel. Download your free copy.
Able to Travel will be hosting workshops at all of this year’s remaining Abilities Expos. For more info, visit www.abilitiesexpo.com.
The policy staff at United Spinal Association is so passionate about June’s first-ever “Roll On Capitol Hill” that the in-house advocates are finishing each other’s sentences.
“We’re hoping to achieve a presence beyond us lobbyists here in D.C.,” says Joseph Isaacs, United Spinal’s vice president for public policy. “After all, legislators want to hear from their constituents — that’s critical …” says Alexandra Bennewith, director of government relations.
“… because that’s who elects and re-elects them — we don’t,” finishes Isaacs.
The Roll On Capitol Hill will bring chapter and support group leaders from United Spinal’s membership division National Spinal Cord Injury Association (NSCIA) to Washington, D.C., to create an army of informed, educated advocates that can achieve the changes most sought after by the disability community.
Day one of the event will focus on trainings and seminars to equip members with the tools to speak to legislators and best impact public policy. On day two, members will have the opportunity to speak directly with legislators and their staffs on Capitol Hill about disability-related issues that concern them. An evening reception will round out the Roll On Capitol Hill with guest speakers to include key legislators.
Isaacs, who has been heading up United Spinal’s Washington, D.C., team since October 2010, explains the importance of introducing legislators to the real people and stories behind the legislation.
“Legislators want to say, ‘Jim so-and-so, a wheelchair user in my district, came to me about how he could save money to support his housing, education and health fees without jeopardizing his other disability and health benefits,’” he says. “Then they can say, ‘I was proud to help pass the Achieving a Better Life Experience (ABLE) Act so he and others like him could put tax-advantaged money aside for his needs and not affect his other benefits.’”
The ABLE Act is one of the current bills that participants in Roll On Capitol Hill may learn about and advocate for in the two-day hands-on training about how to bring your energy and voice to seeking positive public policy for those with SCI/D, whether the subject is threats to Medicaid and Medicare or getting a fairer shake at obtaining employment.
To see if you can wrangle a place at the table, talk to your chapter president. Most transportation and lodging costs for the event will be underwritten by United Spinal for the first two registrants from each chapter or support group. The policy team at United Spinal hopes members who attend will take what they learn at the Washington, D.C., event and share it with others in their local chapters.
“This event is a step forward in galvanizing our own membership and giving them voice, to ensure the dream of the Americans with Disabilities Act is fulfilled, and that advocates are trained to help ensure basic needs such as health care, employment opportunities and transportation are met,” says Isaacs.
“Plus, members can use this event to network with friends and advocates from other states, to learn more about what they are doing that works,” says Bennewith. “All our members need to know what’s at stake and be empowered to do something about it,” she adds.
The Roll On Capitol Hill will take place from June 25-26 at the Mayflower Renaissance Hotel in Washington, D.C. Again, it is open to those who are active in their local NSCIA chapter; if you would like to attend, please see your chapter president. For more information, visit www.unitedspinal.org/events/roll-on-capitol-hill.
Josie Byzek
Advocacy Writer
United Spinal Association
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