Innovations in Care

Additional Resources

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.

Disability Rights 

• 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.
• United States Access Board: Federal agency focused on ensuring accessibility for people with disabilities in architecture, transportation, telecommunications and more.

Employment

• 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 Directory of Vocational Rehabilitation Offices: State-operated programs designed to assist people with disabilities in preparing for, securing and maintaining employment.

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.
• Administration for Community Living:: 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.

Independent living

• Home Remodeling and Modifications for People with Special Needs: Learn about your rights as a home owner or tenant when updates are needed to make your living space more accessible.
• 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

• Administration for Community Living: An agency of the U.S. Department of Health and Human Services, the ACL 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.