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.
posted on July 1, 2010 - 5:31pm
QUEST Vol. 17, No. 3
The Americans with Disabilities Act turns 20 this July. The landmark legislation is still very much a work in progress. Here’s a look at many things ADA-related, both positive and challenging. ‘Disability’ still not defined

Disability advocates say many more preventative measures are needed

posted on July 1, 2010 - 3:21pm
QUEST Vol. 17, No. 3
In 2008, Kathleen Means, 50, was found dead from multiple stab wounds in her Rockford, Ill., apartment. Means, who had facioscapulohumeral muscular dystrophy (FSHD) and walked with difficulty, had lived alone since she retired in 2006. She was well-liked by her neighbors and former co-workers. Police could not discern a motive. One year later, they said they still had “few leads.”
posted on March 31, 2010 - 11:42am
QUEST Vol. 17, No. 2
Remember your elementary and middle school years? How often did adults ask you what you wanted to be when you grew up or where you wanted to go to college? These early educational years are the perfect time to plant seeds of self-purpose and self-advocacy.

The new health care reform law has many provisions of particular interest to people with disabilities

posted on March 23, 2010 - 1:08pm
The newly signed Patient Protection and Affordable Care Act, a dramatic reform of the health care system, contains numerous benefits for families living with neuromuscular disease.  The legislation, approved this week by both Houses of Congress, has features taking effect over the next several months that have implications for people with disabilities. These include expansion of insurance...

Even in tough times, this self-directed service option is giving Medicaid consumers more flexibility and saving states money

posted on March 12, 2010 - 2:30pm
Cash and Counseling, a government program that gives Medicaid recipients in 15 states direct control over their personal-care spending, has been so successful that a majority of states are now adopting it or similar programs. A new report tells why and how.

Questions and answers about ALS and the upcoming National ALS Registry have been posted online

posted on October 7, 2009 - 5:00pm
The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. A list of frequently asked questions (FAQs) about ALS and the registry can be viewed online at www.cdc.gov/als.    

Invitation-only meeting seeks applicants to help shape national disability policy; apply by Oct. 15

posted on September 10, 2009 - 1:53pm
People with disabilities have an opportunity in 2010 to help develop recommendations that will shape national disability policy and programs for the next decade. The National Summit on Disability Policy, sponsored by the National Council on Disability (NCD), will be held in Washington, D.C., from July 25-27. It’s a by-invitation-only meeting, and people who hope to participate must submit an...