Daily Living

Skydiver with CMT

“You take one look out that door … and it’s a long way down.”

In fact it was 14,000 feet down, give or take a foot or two, for Mike Crowe and members of the U.S. Army’s elite Golden Knights precision parachuting team -– a record high for the team in tandem jumping.

Crowe, 59, of Louisville, Ky., dropped from the plane and into the sky linked to Sgt. First Class Mike Elliott, otherwise known as the tandem master.

New Look for Disability.gov

The U.S. Department of Labor (DOL) has reorganized and renamed its Web site that provides information to assist people with disabilities.

Target audiences for the site, www.disability.gov, include not only people with disabilities, but also their families, employers, caregivers, veterans, educators and anyone else seeking disability-related information.

The site is broken down into 10 subject areas:

ALS: Riding for Augie

Many fundraising events for Augie’s Quest (MDA’s aggressive ALS research initiative) tend to be glamorous galas attracting high-profile socialites to genteel settings.

There was nothing genteel about the fundraiser that began June 20 as part of Race Across America (RAAM). It’s one of the toughest endurance events in the world. Cyclists – usually 250 or so, solo or in teams – race 3,000 miles from Oceanside, Calif., to Annapolis, Md. Four-person teams typically cover that distance in five to eight days of nightmarish physical challenge.

Air Travelers Update: Label Issue Drags On

Vent, CPAP and BiPAP users can expect to encounter ongoing obstacles if they plan to fly on commercial airlines in the near future.

Interviews with government and industry representatives show that the special labeling required for such equipment still has not been created, and no one – except the frustrated and angry travelers affected by the ruling – seems to consider it an urgent matter.

The problem

Medicare Wheelchair Benefit Partially Restored

Proposed legislation that would have eliminated a first-month purchase option for power wheelchairs provided by Medicare now has been reworked to retain this option for those who use complex Class 3 power wheelchairs.

MDA Vice President for Advocacy Annie Kennedy credited quick response by MDA advocates with helping sway the House of Representatives Tri-Committee on health care reform, which crafted the Americans Affordable Health Choices Act (H.R. 3200), a proposed package of health care reforms. She noted that most of the people served by MDA use Group 3 power wheelchairs.

CNM, MTM Research: Families Gather

Families affected by muscle diseases known as centronuclear myopathies, including myotubular myopathy, may be interested in attending a conference in Houston July 24-26, either in person or online.

MDA Tweets

Now there’s yet another way to get news from MDA – follow the Association on Twitter, the popular social media tool, through its account, @MDAnews.

Disability Rights Q&A

“Individuals with disabilities are a protected class under civil rights laws, and it is the one protected class that anyone can join, usually involuntarily, at any point in their lives.”

So says attorney Jacquie Brennan, the author of a new guide to disability rights laws, The Disability Law Handbook, that recently was released by the Southwest Disability and Business Technical Assistance Center (DBTAC).

Power Chair Medicare Benefit Threatened

People who receive a power wheelchair through Medicare may lose the option to buy the chair immediately, under a proposed change to Medicare rules being considered by committees dealing with healthcare reform in the U.S. House of Representatives.

The proposed rule change would eliminate the first-month purchase option for power wheelchairs provided by Medicare, requiring all Medicare beneficiaries to wait 13 months before owning their chairs.

Kids' Cool Chair Creation

When a group of Wethersfield (Conn.) High School students was brainstorming ideas for a science project, they looked no further than team member Griffin Latulippe for an idea that vaulted them into the international spotlight.

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