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Disability Community Helps in Haiti
As money, supplies and personnel flow in from around the world to aid victims of the Jan. 12 earthquake in Haiti, a number of U.S. disability organizations are working to make sure that disabled Haitians are not forgotten.
According to Paul Timmons of Portlight Strategies, the situation in Port-au-Prince has produced an outpouring of support within the disability community unlike any seen before in the wake of a natural disaster. “We’ve seen an explosion of grass-roots interest [in Haiti] among people with disabilities in this country,” Timmons says. Based in Stone Mountain, Ga., Portlight provides support to people with disabilities and other underserved communities affected by disasters. In the aftermath of the quake, Portlight has concentrated on supplying disabled Haitians, “as quickly as possible,” with much-needed durable medical equipment, principally walkers, crutches and wheelchairs. When asked how people with disabilities can continue their support for Haiti relief efforts even after the immediate emergency has passed, Timmons responds, “In the short term, keep sending money ... In the long term, we have an opportunity to build — or rebuild — a dynamic advocacy community both here and in Haiti. People with disabilities are more visible now than they used to be.” In addition to Portlight, the Danville, Calif.-based Wheelchair Foundation is spearheading the “Plane to Haiti” mission, with the goal of supplying the country with doctors, support staff and over three tons of medical supplies and equipment. More information about the mission can be found at www.planetohaiti.org. Also, Joni and Friends, a Christian ministry founded by Joni Eareckson Tada, is partnering with churches and other organizations on the ground in Haiti to provide walkers, crutches and both adult and pediatric wheelchairs. To learn more about these efforts, go to www.joniandfriends.org. 
Teddy Pendergrass: 1950-2010
The music world lost one of its greats Jan. 13 when R&B legend Teddy Pendergrass passed away at age 59 following complications from colon cancer surgery.
 Although Pendergrass was not generally thought of as a “disabled musician,” the media coverage of his death did take note of his successful efforts to rebuild his musical career after sustaining a spinal cord injury in 1982. He returned to the recording studio a year after his injury, performed at Live Aid in 1985 and resumed touring, in a limited capacity, in 1997. Later, he served on the board of the National Spinal Cord Injury Association and founded the Teddy Pendergrass Alliance, a nonprofit advocacy group for people with SCIs. Says New Mobility editor Tim Gilmer, who interviewed Pendergrass for NM’s April 2002 cover story, “Most of the news stories I’ve read about his life and death say that he was at his peak at the time of his injury. But what they don’t say is how hard he worked to produce Grammy-nominated albums and songs after his accident. He will always be remembered as one of the all-time great R&B soul singers.”
Access: Zipcar
When Rosemarie Ciotti’s ancient adapted van gave up the ghost in 2008, she thought she’d found a solution to her transportation needs in Zipcar — a subscription-based car-sharing service. “I live on top of a Metro station and there are at least 12 different Zipcars parked outside my condo building,” says Ciotti, of Alexandria, Va. When she inquired about subscribing for a car with hand controls, however, “they told me they don’t offer the option of hand controls and had no plans to do so.”
 Thanks to a settlement reached in September with the D.C.-based Equal Rights Center, Zipcar and another car-sharing service, Flexcar, now offer vehicles with hand controls. “Car-sharing is an exciting new transportation solution,” said Don Kahl of the ERC, “and this agreement will ensure that it is available to all qualified customers.”
Emergency Planning Includes Disabled
In a settlement announced Jan. 21, the City of Oakland, Calif., agreed to adopt an emergency plan that takes into account the needs of people with disabilities.
“We would like to commend the City of Oakland for its model emergency plan announced today,” said Sid Wolinsky of Disability Rights Advocates, which represented the plaintiffs in the suit filed in 2007. “We believe the Oakland settlement can act as a roadmap for municipalities across California to ensure the safety of all residents, including those with disabilities.” In the last 25 years the city has experienced eight federally-declared disasters, including the 1989 Loma Prieta earthquake, the 1991 Oakland Hills firestorm and severe winter storms in 1997 and 1998. Under the terms of the settlement, Oakland has developed a new emergency plan that identifies at least 20 accessible emergency shelters; staffs shelters with a “functional needs coordinator” responsible for assisting people with disabilities; upgrades the city’s emergency notification system to accommodate mobility, visual and hearing impairments; and creates a geographic information system designed to help first responders locate people who may need accessible transportation. Judith Smith, an Oakland resident who is a wheelchair user, expressed satisfaction with the agreement. “Prior to the settlement, I feared that I would be stranded in my home during a disaster or turned away from a shelter because of my wheelchair. I am relieved that an emergency plan exists for people with disabilities.”
Power Chairs Must Be Rented Before Purchasing
As a health care reform bill nears the finish line in Congress, it looks as if a key provision for power chair users has fallen by the wayside.
Currently, Medicare beneficiaries requiring power chairs are allowed to purchase the chair the first month they are prescribed it. Under the health care bills proposed in Congress, this "first-month purchase option" is being eliminated, and power chairs users under Medicare will have to rent their chairs for 13 months before they have a chance to buy it.
"The concern is that if a person is renting a power wheelchair, they will not have all the adjustments and other things that are needed to individualize a wheelchair — cushions and whatnot," says Andrew Morris, director of legislation for Spinal Cord Advocates, a joint project of the United Spinal and National Spinal Cord Injury Associations. "Not having the appropriate fittings could lead to secondary conditions — that will hurt the consumer and cost Medicare more to treat than if it had paid for the power wheelchair in first month."
Originally, a so-called "clawback" amendment to the bill would have continued to allow consumers to purchase power chairs, with the difference between the rental and purchase prices refunded to Medicare if it turned out the chair was not needed long-term. This amendment, however, was rejected after the Congressional Budget Office estimated that it would save less money than eliminating the first-month purchase option entirely. "We strongly disagree with this [estimate]," Morris says.
Morris urges consumers to contact their elected representatives and demand that the clawback amendment be included in the final bill, but he also adds, "Right now it's back to square one and we are running out of time."
As part of its own advocacy efforts on behalf of DME users, New Mobility is continuing to search for qualified wheelchair users to tell their stories — about difficulties getting the equipment they need — on Capitol Hill as part of April's CELA (Continuing Education and Legislative Advocacy) conference. More than 150 applications have been received for review so far. Anyone interested in participating can apply to be flown to Washington, DC, at CELA's expense; see the application here.
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