Help Through Services and Support
Upon learning you've been diagnosed with a neuromuscular disorder, understanding where to begin once the diagnosis is confirmed can be challenging. The following categories can provide valuable links to services and resources at the national and local levels.
- Administration for Children and Families: An agency of the U.S. Department of Health and Human Services, ACF provides information about programs for people with disabilities, including education, energy assistance, health insurance for children and much more.
- Americans with Disabilities Act: Find information and technical assistance pertaining to the Americans with Disabilities Act.
- Americans with Disabilities Act Enforcement: A status report is available from the U.S. Department of Justice.
- United States Access Board: Federal agency focused on ensuring accessibility for people with disabilities in architecture, transportation, telecommunications and more.
- Disability.gov: Search for practical information about securing employment, job accommodations, employment rights of people with disabilities and much more.
- Job Accommodation Network: A service of the U.S. Department of Labor’s Office of Disability Employment Policy that offers comprehensive resources for workplace accommodations.
- Office of Disability Employment Policy: An agency of the U.S. Department of Labor
- State Vocational Rehabilitation Programs: State-operated programs designed to assist people with disabilities in preparing for, securing and maintaining employment.
- ChairDex: This independent website offers information about types of wheelchairs, maintenance and resources for people who use wheelchairs.
- Rehabilitation Engineering and Assistive Technology Society of North America (RESNA): Focused on technology and disability, RESNA promotes research and development of assistive technology, education, advocacy and the provision of assistive technology devices for people with disabilities.
- State Assistive Technology Centers: State Assistive Technology Centers work to increase independence for people with disabilities through assistive technology solutions. Services available typically vary by state, and may include equipment exchange programs, low-interest loan opportunities, information about funding resources, training and technical assistance, and more.
- State Directory of Vocational Rehabilitation Offices: Site provides a list of vocational rehabilitation providers (and includes a list of state protection and advocacy offices). Vocational rehabilitation programs focus on helping people with disabilities becoming economically independent through meaningful and gainful employment. This is done through a wide range of services that vary from state to state. In many states,assistance with durable medical equipment is available.
- Wheelchair Net: Created by the RERC on Wheeled Mobility at the University of Pittsburgh, this site contains tons of information on purchasing and using a wheelchair.
- Wheelchair Resource: This website contains articles and resource listings with information about finding, purchasing and owning a wheelchair.
- NMEDA: NMEDA provides adaptive transportation solutions for you, your family or caregivers. Through the use of mobility equipment, NMEDA Dealer Members provide independence and the ability to get behind the wheel. With equipment installed by a dealer who participates in NMEDA’s Quality Assurance Program (QAP™), a wheelchair accessible or modified van, truck or car can provide the assurance you need to feel confident and secure on the road once more.
Government benefits for people with disabilities
- BenefitsCheckUp: Developed by the National Council on Aging, this site connects older adults with information about a wide range of benefits programs, including assistance with prescription drugs, health care, rent, utilities, transportation and more.
- Disability.gov: A federal website providing quick and easy access to information and resources designed to help people with disabilities lead full and independent lives.
- Social Security Administration: The official website of the Social Security Administration (SSA).
- Social Security Disability Insurance: SSDI provides benefits to individuals with disabilities (and certain family members) who have worked long enough and paid Social Security taxes. Find the SSA office serving your area.
- Supplemental Security Income: SSI pays benefits to adults with disabilities who have never worked and who have minimal financial assets. Find the SSA office serving your area.
- U.S. Administration on Aging: Through its Eldercare Locator, this agency helps individuals find local resources that can help older people and their families access home and community-based services such as transportation, meals, home care, caregiver support services and more.
- Centers for Independent Living: Private, nonprofit agencies offering services aimed at maximizing the independence of people with disabilities. Services vary by location, but often include independent living skills training, as well as information and referral.
- National Council on Independent Living: NCIL advances independent living and rights of people with disabilities through consumer-driven advocacy. NCIL’s website contains a wide range of helpful resources.
Publicly funded medical benefits
- Agency on Aging: An agency of the U.S. Department of Health and Human Services, the AOA works nationally and through local departments on aging to empower and educate older adults and their families to make informed decisions, as well as to effectively access all services available through federal, state and community-based programs.
- Centers for Medicare and Medicaid Services
- Department of Veteran Affairs: If you’re a U.S. military veteran, learn about medical benefits for which you may be eligible.
- Medicaid: State-administered programs designed to ensure that certain low-income individuals receive the health care they need. Each state sets its own guidelines for eligibility and covered benefits.
- Medicare.gov: The official U.S. site for people eligible for and/or covered by Medicare.
- Medicare Rights Center: A national, nonprofit organization working to help individuals navigate the complexities of Medicare through Web-based education, Medicare counselors, e-newsletters and resource referral.
- Medicare Savings Program: Learn about state programs that help Medicare beneficiaries with limited income and resources save money on Medicare premiums, deductibles and/or co-pays.
- State Health Insurance Counseling and Assistance Programs (SHIPs): State offices provide information about choosing Medicare plans, understanding your Medicare bills, how to appeal Medicare decisions and more.
- State Pharmacy Assistance Programs (SPAP): Many states have SPAPs that help eligible individuals pay for prescription medications based on financial need, age or medical condition. Each SPAP establishes its own eligibility and coverage criteria. To learn about the SPAP in your state, contact your State Health Insurance Assistance Program.
While there are many challenges that come with learning you've been diagnosed with a neuromuscular disorder, understanding where to begin once the diagnosis is confirmed can be a major obstacle. For those individuals who are newly diagnosed, the following resources, listed by state, can provide a valuable connection to getting the services and resources they desperately need. This directory was created to provide those we serve with access to state-specific resources such as advocacy, education, disability, development, employment and mental health, just to name a few.
- State agencies and organizations — may include state resources such as rehabilitation services, vocational rehabilitation agency, department of education, official state website and state senators/representatives
- Organizations especially for parents — resources for Parent Training and Information Centers
- Other disability-related resources — state agencies and organizations such as independent living centers
Please be sure to report inaccurate information to ResourceCenter@mdausa.org.
Here are some other helpful resources:
- Air Travelers Hotline: Sponsored by the U.S. Department of Transportation to provide general information about rights of air travelers with disabilities and assist air travelers with disability-related issues.
- Department of Motor Vehicles: Contact your state's Department of Motor Vehicles to obtain a permit to park in designated accessible parking spots, which will help you avoid fatigue from having to traverse long distances in parking lots.
- Disability.gov: Find information on accessible transportation services for people with disabilities.
- Easter Seals Project ACTION: Project ACTION was created to promote universal access to transportation for people with disabilities under federal law and beyond by partnering with transportation providers, the disability community and others through the provision of training, technical assistance, applied research, outreach and communication.
- Transportation Security Administration: Learn about air travel security procedures for people with disabilities and medical conditions.
- Your MDA Care Center
- Young Adult Programs
- Find Support
- Neuromuscular Disease Registry
- Quest Magazine
- The Affordable Care Act