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Getting Somewhere:
Transportation and Disability
Misc.
MESSAGE FROM THE CHAIRMAN OF THE BOARD: Improved Visibility
LETTER FROM THE PRESIDENT: Leaders in Transit
LETTERS TO THE EDITOR: July 2007
Make SSDI Work for People with Chronic Illness
LETTER FROM THE EDITOR: Get Together in Orlando
NEWSROOM: July 2007
Compiled by Peggy Hathaway
RESEARCH FRONT: July 2007
Acorda Enrolls First Patient in Phase 3 MS Study
Attacking Lou Gehrig’s Disease From All Angles
Features
Mass Transit Access: We Were There
When it comes to the fight for mass transit for people with disabilities, United Spinal has always been a leading participant.
By James J. Weisman
Air [...]
Much of our work as an organization-and the work of people with disabilities-is about counteracting misconceptions about our abilities.
Being able to get from point A to point B is crucial to the independence of people with disabilities and to reaching our potential as active members of the communities we live in. United Spinal recognized this early on and took Herculean measures to ensure that the needs of our members were taken into account by public transportation authorities, airline companies and transportation providers in general.
You can read about our involvement in making public transportation broadly accessible beginning here. But our work in this area is far from finished.
Make SSDI Work for People with Chronic Illness
I wanted to write to you about the single most important issue (outside of a cure) affecting U.S. citizens who suffer from serious chronically disabling diseases, such as multiple sclerosis.
Two months ago, I launched a grassroots initiative to change the way Social Security Disability benefits are awarded to victims of MS and other chronically disabling illnesses.
My goal is to gather 10,000 signatures within the next year in order to establish credibility at the federal level. I am also in the process of forming a coalition panel of various chronic illness organization leaders, [...]
Recently I was talking to David Politz, 45, an Air Force veteran and United Spinal member from Philadelphia, who was telling me about his plans this summer. After four years in rehab for an accident that resulted in a spinal cord injury, Dave said, “I’m finally going to take a vacation.”
This past spring, Dave was reading an issue of Action when his eye fell on an ad for “wheelchair friendly cruises” from Royal Caribbean and United Spinal’s ABLE to Travel program. (You can see a similar ad on page 15 of this issue.) “Something about it really caught my attention,” Dave [...]
Acorda Enrolls First Patient in Phase 3 MS Study
Acorda Therapeutics recently announced that it has begun a second Phase 3 clinical study of Fampridine-SR in multiple sclerosis (MS), with the randomization of its first patient into the treatment phase of the study. The study is expected to enroll approximately 200 patients at 35 leading MS clinical centers in the United States and Canada. Fifteen centers have been initiated and are in the process of screening subjects for the trial.
The MS-F204 study, which is conducted under a Special Protocol Assessment (SPA) issued by the Food and Drug Administration (FDA), will evaluate [...]
When it comes to the fight for mass transit for people with disabilities, United Spinal has always been a leading participant.
By James J. Weisman
In a ceremony at Grand Central Terminal, New York Gov. Mario Cuomo signs a settlement agreement outlining specific steps to make New York City’s transportation system more accessible to people with disabilities. To Cuomo’s left is James J. Peters, executive director of Eastern Paralyzed Veterans Association, which is now United Spinal.
After successfully pushing to make all New York City buses wheelchair accessible, United Spinal has hosted frequent transit trainings to familiarize bus operators and passengers who [...]
The 1986 Air Carrier Access Act has been updated and expanded to include foreign carriers, but travelers with disabilities still have a responsibility to help keep air travel as accessible as possible.
By Kleo King
The Air Carrier Access Act (ACAA) was enacted into law in 1986 and the implementing regulations were promulgated four years later by the United States Department of Transportation (DOT). A lot has happened in the 21 years since the passing of the legislation.
Significant amendments to the regulations have been added, including requiring level-entry boarding, mechanical lifts or other devices for all aircraft with 19 or more [...]
For those who can’t use accessible mass transportation systems, the ADA requires localities to make available paratransit services. How have they been performing since the ADA became law?
By Terry Moakley
Charles Roman (in chair) is mostly satisfied with the paratransit service he has received. Is he typical or unusual?
In June of 2005, in his letter of transmittal to President Bush of his agency’s comprehensive report-The Current State of Transportation for People with Disabilities in the United States- then-National Council on Disability (NCD) chairperson Lex Frieden wrote, “There have been many advances in America’s transportation systems and services [...]
By Bob Nunn
Dealers mingled at the National Mobility Equipment Dealers Association (NMEDA) show in Tampa, Florida where new products making personal transportation more accessible to drivers with disabilities were exhibited.
When Carol Hawkins needed a rear-entry wheelchair van to transport her 37-year-old daughter, Joella, from Rhode Island to Florida, Hawkins turned to eBay. Joella, who has spina bifida and hydrocephalus, uses a wheelchair too big to fit in a side-entry vehicle.
Late last year, Hawkins paid $13,500 for a used van from someone in Kentucky and immediately noticed problems with the vehicle upon delivery. A discrepancy with the odometer [...]
How does someone with limited resources find an affordable adapted vehicle? Here’s one person’s story…
By Tiffiny Carlson
Note: Some of the terms used in the following article are specific to the state of Minnesota.
Four wheels. We can get them for free from the government if they’re on durable medical equipment, but when it comes to gas-powered four-wheeled vehicles that take us 65 mph on the Interstate (i.e., an adapted vehicle), the government isn’t as interested in giving those away for free.
Most states simply don’t like to fund adapted vehicles for citizens with disabilities. With new vans costing upwards [...]
As warmer weekends and summer vacations draw near, the number of Americans participating in outdoor recreational activities and sports increases. And unfortunately, so do the injuries.
By Celina De León
Never ride without a certified motorcycle helmet and eye protection.
United Spinal Association’s Motorsafe program is a nationwide public awareness campaign promoting safe motoring. The program targets all people who operate automobiles, motorcycles, all-terrain vehicles (ATVs), motorboats, personal watercraft, and snowmobiles. United Spinal’s goal is to share information and knowledge of specific hazards involved in operating these types of equipment and to highlight good practices that will prevent serious injury or even [...]
Terrie L. Price, PhD, president of the American Association of Spinal Cord Injury Psychologists and Social Workers (AASCIPSW), is director of Family Services at the Rehabilitation Institute of Kansas City in Missouri. Recently she made herself available for an interview with Action.
How long have you been a member of AASCIPSW? What roles have you played there before becoming president?
I’ve been a member 10 years and have previously served as Chairperson of the Clinical Practice Committee, and Member at Large and Vice President of the Board.
How did you come to be involved in SCI care?
My area of clinical [...]
By Tamar Asedo Sherman
Before you can apply for a job, even an entry level job, you need a résumé. A prospective employer wants to know right away what you can do to further the goals of her company. Keep in mind that you’ve only got about 20 seconds to capture her attention before she tosses your résumé aside and looks at the next one.
You can dust off your old résumé and use it as a baseline, but you must update it. Don’t panic if it’s been years since your last job. Résumés no longer require a chronological listing of [...]
By Rosemarie Rossetti, PhD
My husband and I are in the final design phase of our new home, the Universal Design Living Laboratory (www.udll.com). As I look at our plans, I see that miles of wires will be concealed within our walls, ceilings, and floors. These will enable us to integrate the home’s various electrical technologies to make the house “smarter.”
More and more these days, homes are including integration technology, allowing the heating, ventilating and air conditioning system (HVAC), lighting, security and home entertainment to be interconnected, thus communicating with each other. When the many systems at work [...]
By John M. Williams
For decades, people have been complaining about the high costs of assistive technology (AT) products. It is a repeated complaint that I hear every time I go to a conference on assistive technology. The voices are loud and angry as they demand, rather than ask, an answer from manufacturers, “Why can’t you lower your prices?”
For decades manufacturers have heard the same irate questions. Contrary to consumers’ believing the manufacturers are gouging them, manufacturers staunchly defend their prices.
By Ed Lash
In the last two columns, we looked at a surprisingly common aspect of multiple sclerosis (MS): the tendency of some people with MS to never perspire, even in warm and humid weather. We discussed some of the relatively serious health issues related to non-perspiration. Now we are going to look at methods to counter this deficit.
Eating and Healing: Traditional Food As Medicine
Edited by Andrea Pieroni and Lisa Leimer Price Haworth Press, Binghamton, New York. Softcover, 406 pages.
Reviewed by Gil C. Allen, MA, MS, PhD, DC
Eating and Healing:Traditional Food As Medicine is a compilation of articles written by various agricultural researchers who have descended on little known human cultural groups in different parts of the world to determine their indigenous knowledge of foods, plants and herbs used for sustenance and medicinal purposes. The book included charts of plants by botanical name and their uses in society, some black and white pictures of [...]
by Kathleen M. Muldoon
July brings to mind my attempt to get a new bicycle during my summer vacation before starting seventh grade. I wasn’t able to do the jobs my friends could, such as walking dogs or mowing lawns, so I had to be more creative. I needed a job I could do at my own pace, and that summer I thought I’d found the ideal situation, advertised on the back page of my comic book.
Sea monkeys are nature’s wonder! They’re the perfect pet. Little to no maintenance. Create instant life when your package of magic crystals arrives containing hundreds [...]
By Tom Scott and Celina De León
United Spinal Association Yankees Assist in Teaching Softball Skills to Youngsters with Disabilities for Derek Jeter’s Turn 2 Foundation
Future Derek Jeters on wheels? Some, perhaps, but all of these New York City kids will surely be healthier after participating in a program the United Spinal Yankees wheelchair softball team conducted with financial support from Derek Jeter’s Turn 2 Foundation.
Members of the United Spinal Association Yankees wheelchair softball team in conjunction with the City of New York Parks & Recreation ran a wheelchair softball clinic for kids ages 8-18 with Derek Jeter’s [...]
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