All Diseases

FCC Surveying People with Disabilities about Calling 911

The Federal Communications Commission (FCC) is conducting an online national survey of individuals with disabilities to determine the most effective and efficient methods to access emergency services.

According to the FCC, a new emergency-access system is being developed that will allow people to reach 911 not only by using voice telephones, but text, video and other devices, some of which use the Internet.

'Cloud-Enhanced' Accessibility: Competition Seeks Visionaries

The Federal Communications Commission wants to know: What’s your vision for using “cloud computing” to create new opportunities for people with disabilities?

The FCC is co-sponsoring the competition “Lifted by the Cloud: Visions of Cloud-Enhanced Accessibility,” and asking participants to create short multimedia presentations showing “what could be possible using the computing and communication power now available via the Internet.”

Legislative Briefs: International Rare Disease Day and More

International Rare Disease Day 2011

Monday, February 28, 2011, marks the fourth annual International Rare Disease Day, in which hundreds of patient organizations from more than 40 countries conduct awareness-raising activities around the slogan “Rare but Equal.” The worldwide event is an effort to draw attention to rare diseases and the millions of people who are affected by them — including all those covered by the MDA umbrella. 

Study Seeks to Learn More About Workers with Disabilities

If you’re a person with a disability who also manages to hold down a job, researchers are interested in finding out how you do it.

A new study is looking for people who work outside the home at least 20 hours a week and who also have significant mobility impairments, such as difficulty moving their legs and/or arms.

Despite Objections, Medicare Competitive Bidding Set to Begin

Competitive bidding among Medicare providers of durable medical equipment, prosthetics, orthotics and supplies (DMEPOS) is set to begin January 1 in nine regions of the country, despite sharp criticism of the plan by lawmakers, economists, patient advocates and others.

Under the new procedures, DMEPOS providers must go through a competitive bidding process to win the right to serve Medicare recipients. Medicare pays these providers to serve the medical needs of millions of Americans who use medical supplies at home, including oxygen equipment and power wheelchairs.

Medicaid Changes Expand Access to Home Care

Nearly 3 million disabled and elderly Americans rely on Medicaid to provide home health aides, personal care attendants, group homes, adult day care, meals, transportation and other services that enable them to stay in their homes and communities and out of nursing homes.

New Apprenticeship Program for Personal Care Attendants

A new training opportunity, the Direct Support Professional Registered Apprenticeship Program, will assist direct support professionals (such as hired caregivers and aides) in advancing in this essential field, say the program’s creators, the National Alliance for Direct Support Professionals (NADSP) and the American Network of Community Options and Resources (ANCOR).

MDA Labor Day Telethon Moves to Shorter Format

Sometimes, less is more — and that’s the strategy behind MDA’s decision to shave off more than 15 hours from next year’s Labor Day Telethon broadcast.

The new six-hour Telethon will run during the prime-time viewing hours of 6 p.m. to midnight (Eastern time) on the Sunday of Labor Day weekend, and will include the same time-tested mix of top entertainment, profiles of individuals and families with neuromuscular diseases, check presentations by MDA sponsors and live local segments.

Fly Out 2010 Takes Off

“Sometimes change starts with the little things, like sharing your story with a member of Congress.”

These words, spoken by MDA Health Care Service Coordinator Carolyn McNutt after an August meeting with Arkansas Rep. Mike Ross, succinctly capture the purpose of the MDA Fly Out and make clear why the fledgling program is so successful.

Fly Out 2010 Slideshow

This year's Fly Out was a resounding success, with dozens of MDA families, sponsors and advocates meeting with members of Congress and their staffs in states and districts from coast to coast (and even in Hawaii).

In all of these meetings, which took place in the home districts of more than 30 U.S. senators and representatives throughout August and September, families shared their stories and asked for support for legislation important to the neuromuscular community.

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