News from NSCIA: June 2014

Third Annual ‘Roll on Capitol Hill’ Approaches

Willis Washington and Jose Hernandez: ready to “Roll” again.

Willis Washington and Jose Hernandez: ready to “Roll” again.

At press time, close to 80 advocates from 24 states, plus the District of Columbia, are registered to attend the third annual Roll on Capitol Hill, June 22-25 in Washington, D.C. Roll on Capitol Hill is United Spinal’s annual legislative advocacy event that addresses issues that impact the health, independence and quality of life of individuals living with spinal cord injuries and disorders. Roll on Capitol Hill is a time when United Spinal Association members and advocates converge on our nation’s capital to speak directly with the legislators who make decisions that affect our daily independence and quality of life.

What’s on tap for this year? Well, after the welcome reception Sunday night and a full-day of speaker presentations and advocacy preparations on Monday, advocates will be ready to spend the day on Tuesday meeting with their legislators and making sure that our voices are heard on the following critical issues — access to Complex Rehab Technology (HR 942/ S 948), the UN Convention on the Rights of Persons with Disabilities, improving access for adapted housing modifications (HAVEN Act); and establishing the ability for individuals with disabilities and their families to save tax-exempt private funds for education, housing, transportation, employment support, assistive technology/personal support services (ABLE Act), among many others.

We will wrap up a full day of meetings on the Hill with our 2014 Congressional Awards Reception. Senator Bob Casey, D-Pa.; Rep. Al Green, D-Texas; and Rep. Cathy McMorris-Rodgers, R-Wash., will be among those recognized for their support of people with disabilities.

United Spinal Works with Google on Self-Driving Car

Alex Bennewith (left) got a first-hand look at Google’s self-driving car.

Alex Bennewith (left) got a first-hand look at Google’s self-driving car.

United Spinal was one of several key stakeholders in the disability community to attend a demonstration of Google’s self-driving car on Apr. 28 in Washington, D.C. The prototype car is equipped with a top-mounted laser that generates a detailed map of the environment around the vehicle and then uses that information in conjunction with real-world maps and Google’s evolving software to autonomously drive the vehicle.

“This is really exciting because the technology has huge potential for users with various functional limitations,” says Alex Bennewith, United Spinal’s vice president for government relations. “In their current form, the vehicles aren’t accessible for wheelchair users, but I look forward to seeing how they can be adapted.”

Google executives detailed their progress and explained their hopes for the project over breakfast at the Willard Hotel, highlighting their assertion that the car will help decrease vehicle accidents due to human error. Attendees, including Bennewith, then got a chance to ride through the streets of Washington, D.C., and on highways in one of two Google cars.

“It was crazy,” reports Bennewith. “It was like I was in a sci-fi movie. There was a woman in the driver’s seat, but she didn’t have her hands on the steering wheel or her feet on any of the pedals. The car did everything itself. There was also a man in the driver’s seat holding a computer that allowed you to see whatever the car saw. There is a manual override feature and there are still some software adjustments that need to be made but I can’t wait to see what upgrades Google makes.”

Google has not announced any firm dates for the next steps in the self-driving car’s development, but United Spinal is excited to be involved.

Video Released to Improve Gas Station Accessibility
United Spinal Association and the Disability Gas Coalition, a national and state level disability rights organization, have released a video of Congresswoman Tammy Duckworth, D-Ill., that highlights her ongoing struggle to get gas at service stations as a double amputee, war veteran heroine and wheelchair user.

The two organizations, which have joined forces to advocate for refueling assistance at the pump for people living with disabilities, are releasing the video as the busy summer driving season approaches. Fifteen million drivers with disabilities in the United States are unable to easily access gas at 159,000 stations nationwide.

“All persons with disabilities, including thousands of returning veterans, understand the difficulty of filling up their tanks at gas stations that are supposedly accessible,” said Rep. Duckworth.

In the video, Rep. Duckworth discusses how currently, Americans with disabilities often have to resort to ineffective and humiliating means of requesting assistance like honking their horn and flashing lights in typically loud and crowded gas stations.

She cautions that the alternative, having the disabled driver exit the vehicle, is either impossible at some gas stations, or dangerous.

“We must do better. The ability to drive independently is key to the American lifestyle. Ensuring that disabled Americans can consistently and safely refuel their vehicles is critical to their ability to live independent and fulfilling lives,” she added.

The Americans with Disabilities Act was passed over 20 years ago, requiring refueling assistance at the pumps when there is more than one employee on duty. Yet for people who use wheelchairs, disabled veterans and other people with disabilities, service remains elusive.

The problem according to the Disability Gas Coalition is that while gas stations are scrupulous about meeting EPA requirements for fuel storage tanks, or about meeting brand requirements for signage and logos, they are often uninformed and do not meet the legal requirement to provide refueling assistance for drivers with disabilities at the pump.

“United Spinal urges all people with disabilities to contact their elected officials and ask for legislation that requires assistance be provided at gas stations,” said James Weisman, United Spinal’s general counsel.

United Spinal is asking the disability community to help spread the word on the lack of gas station access by enlisting state or national organizations to join Disability Gas Coalition.

Individuals can also tweet gas station accessibility issues and include @disabilitygasco or share photos of ineffective signage or videos that document the struggle to get gas on Facebook and by joining the Disability Gas Coalition group.

CRPD: Tell Your Story
United Spinal remains committed to passage of the United Nations Convention on the Rights of Persons with Disabilities. The convention promotes the ideals of the Americans with Disabilities Act around the world.

Senator Tom Harkin, D-Iowa, vowed to continue fighting for United States ratification of the treaty. Senator Harkin has asked for individuals to let him know why the CRPD matters.

Relaying any experiences living, traveling, working or studying abroad and any barriers that were encountered can help senators understand why United States ratification of the treaty is important.

To date, 158 nations have signed the treaty, including the United States, and 143 nations have ratified the CRPD.

Senator Harkin believes that an important part of winning this fight is ensuring that the personal stories of people with disabilities, including disabled veterans, are shared with senators.

United Spinal remains hopeful that with the commitment of leaders in the Senate to move the treaty forward it will be ratified this year. Tell your story at www.harkin.senate.gov/help/crpdstories.cfm

Improve Access to Wheelchair Repair Now
Wheelchair repair is essential to a wheelchair user’s mobility, independence and ability to contribute to and participate in society. However, access to wheelchair repair services is being restricted by Medicare’s policies.

It is critical that wheelchair users have access to a Medicare supplier with trained and experienced service technicians and the infrastructure and inventory to be able to repair the equipment they rely on. Please take a minute to complete this quick online survey about your access to wheelchair repair so we can share the results with Medicare officials and policymakers: www.surveymonkey.com/s/wheelchair-repair.

You can also help by telling Congress that Medicare must improve access to wheelchair repairs now. Use this linked form to easily send an email to your representatives and senators with just the click of a button: http://goo.gl/UrRRmz.

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