Legislation and Policy

MDA families eager for research breakthroughs take active roles to accelerate therapy development and spread awareness of MDA's mission

posted on July 14, 2015 - 3:19pm
Children and adults living with neuromuscular diseases are not only awaiting progress in the search for treatments and cures; they are directly supporting and advancing that progress in real and significant ways.

Provisions for more home- and community-based services are taking effect, but states may need a push to implement them

posted on November 24, 2010 - 2:14pm
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.

MDA families, clinicians and advocates met with lawmakers and staff in 27 states; more meetings planned throughout the year

posted on October 4, 2010 - 5:35pm
“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.

Photos of MDA families, sponsors and advocates who met with policymakers to share stories and gather support in August & September 2010

posted on October 4, 2010 - 5:26pm
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...

Uncle Sam seeks advice about improving hiring regulations for people with disabilities, and offers info about making health care facilities accessible

posted on August 6, 2010 - 3:51pm
Two federal agencies are seeking to improve conditions for people with disabilities, in one case by strengthening federal hiring regulations, and in the other by making health care facilities more accessible to people with mobility problems. Improving employment The U.S. Department of Labor, through its Office of Federal Contract Compliance Programs (OFCCP), is inviting public comments on ways to...

Members of the MDA community share their thoughts about the Americans with Disabilities Act and its impact on their lives

posted on July 26, 2010 - 11:48am
The Americans with Disabilities Act — the ADA — turned 20 on July 26, 2010. How has this landmark civil rights legislation affected your daily life? Have you experienced discrimination in employment, in access or in attitude? What are some of the best changes that have occurred thanks to the ADA — and where do we still need to improve?

In recognition of this landmark legislation, MDA has pulled together a variety of articles by and for people with neuromuscular diseases

posted on July 26, 2010 - 10:55am
Two decades ago, on July 26, 1990, President George H.W. Bush signed into law the landmark civil rights legislation called the Americans with Disabilities Act, intended to eliminate barriers for people with disabilities. Two decades later, daily life has become much more accessible and fairer in many ways, not only for people with disabilities but for everybody. And yet — in physical...

Victor Pineda travels the world promoting 'inclusive societies' for young people with disabilities (video)

posted on July 13, 2010 - 5:36pm
Life has been a whirlwind of activity for Victor Pineda lately.  The 31-year-old bachelor got married the first week in July.  He earns his Ph.D. in government planning around the first of August. But these momentous events are almost insignificant compared to the rest of his typical schedule. In 2005 Pineda created the Victor Pineda Foundation (VPF) and today it commands most of his...