Advocacy Resources

Government Resources

Whether your most recent exposure to government was in a fourth-grade history class or a doctorate level policy course, you can effectively advocate for yourself and your community by accessing the right tools. The following resources are provided to further empower you. Remember ... Your most powerful resource is your personal experience, and elected officials are put in office to represent the concerns and issues that matter most to you.

For questions about any of the listings, please contact your local MDA office or email MDA’s national Advocacy office at advocacy@mdausa.org.

	Access Board
ADA Enforcement — Department of Justice Status Report	Administration on Developmental Disabilities
American Red Cross — Emergency Shelter Information App	Americans with Disabilities Act (ADA)
Angel Flight	Centers for Medicare and Medicaid Services
Disability.gov	Equal Rights Center
Genetic Information Nondiscrimination Act Help (GINA)	GettingHired.com (employment resource specifically for job candidates with disabilities)
Going to Work: A Guide to Social Security Benefits and Employment for Young People with Disabilities Resource Guide	Institute for Educational Leadership
Job Accommodation Network	Legislative Glossary
Medicare Rights Center	National Resource Directory
Office of Special Education and Rehabilitative Services (OSERS)	Paralyzed Veterans of America
Partnership Plus Toolkit (Ticket to Work)	Patient AirLift Services
Social Security Disability Guidebook	State Representatives Locator
The Affordable Care Act’s Prevention and Public Health Fund in Your State	The Washington Center for Internships and Academic Seminars (federal government internships)
THOMAS — Library of Congress	Ticket to Work Program (from Social Security)
Ticket to Work Service Provider Directory	Transportation Security Administration’s Tips for Travelers with Disabilities and Medical Conditions
U.S. Department of Education	U.S. House of Representatives
U.S. Senate	Workforce Recruitment Program (from the Department of Labor)
Your Congress — Your Health (from Research!America)

School Advocacy

The following materials and resources are intended to be used as tools to help you ensure that your child's school experience is as rigorous and supportive as possible. If you are facing a legal matter, contact your local MDA clinic social worker, state department of education or state disability law center.

For additional information about accommodations for specific neuromuscular diseases, or to arrange for classroom presentations (or presentations for faculty members) by MDA staff, please contact your local MDA office.

Association on Higher Education and Disability	MDA Campus Accessibility Checklist
U.S. Department of Education	National Center on Secondary Education and Transition
National Dissemination Center for Children with Disabilities	Office of Special Education and Rehabilitative Services (OSERS)
Peterson's College Planning Timeline	Think College

MDA on the Record

Coalition Letter of Support to Congress regarding extension of the Therapeutic Discovery Project Tax Credit - December 14, 2011

Download

Quest and ALSN articles

Resource Roundup: IEP and 504 Plans — April 1, 2011
Desktop Invention Helps Students Succeed — October 1, 2011
Read Any Good E-Books Lately? — March 31, 2010
Buddy Up: MDA's Educational Advocacy Initiative Is Your School Partner — March 31, 2010
As If High School Weren't Tough Enough ... — July 1, 2009
Did Someone Say 'Recess'? — July 1, 2009
504 Plans: What Parents Should Know — April 1, 2009
Getting Creative with Adaptive P.E. — April 1, 2009
IEP Resources for Assistive Technology and Learning Disorders — March 1, 2008
How to Get Your Child's School to Provide Assistive Technology or Help with Learning Disabilities — March 1, 2008
Building the IEP Puzzle — March 1, 2007
Friendships Matter: A New IDEA — March 1, 2005
Friendships Matter: Building IEPs that Build Social Relationships — March 1, 2005
Law Requires Mediation in Special Ed Disputes — March 1, 2005
Homebound Programs: Two stories — February 1, 2002
Homeschooling: Two stories — February 1, 2002
Learning at Home — February 1, 2002
Joseph’s IEP — January 1, 1997

Webinars

MDA offers webinars on a variety of topics that are of importance to the MDA community. These webinars are led by individuals affected by neuromuscular disease and/or other experts in the subject matter. Some webinars are disease-specific in nature, but many feature information that’s applicable to everyone in the MDA community.

Genetic Counseling	Dating and Disability
The Genetic Information Nondiscrimination Act in Action	Educational Advocacy for Educational Professionals Educational Advocacy for Educational Professionals
Educational Advocacy for MDA Families Educational Advocacy for MDA Families Follow-Up Q&A	The Road to College – A GPS for Students with Disabilities "The Road to College" Follow-Up Q&A (PDF)
Traveling with Ease: Travel Tips and Tools for Travelers with Disabilities	National ALS Registry Update - Physicians
National ALS Registry Update - Families	Knowing Your Rights
That's How We Roll: Living Independently with a Neuromuscular Disease	ALS Research Update
ALS Medical Management	ALS Advocacy Town Hall