At NMD United, we strongly believe in the old adage that “knowledge is power.” To that end, we have put together a list of valuable online resources to assist people with neuromuscular conditions. Collectively, the core members of NMD United have used these websites and have found them helpful. Organizing and presenting these materials will be an ongoing project of our organization. If you have additional resources that you would like to suggest, please feel free to drop us a line.
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Griffin-Hammis Associates, LLC – A full service consultancy specializing in developing communities of economic cooperation and self-employment opportunities for people with disabilities.
Social Security Considerations for Small Business Owners with Disabilities – An introduction to self-employment for individuals receiving SSI/SSDI by Cary Griffin and David Hammis.
Making Self-Employment Work for People with Disabilities – A guide to starting and maintaining your own small businesses by Cary Griffin and David Hammis. A guide to employment supports for persons with disabilities under SSI/SSDI programs.
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Vocational Rehab Self-employment Q&A – A fact sheet accessing resources to support self-employment outcomes.
The Threshold Test for Section 1619(b) Eligibility – Information about SSA’s “threshold” concept to measure whether an individual has sufficient earnings to replace SSI cash benefits, Medicaid benefits, and publicly-funded personal or attendant care that would be lost due to his/her earnings.
Individualized Threshold Calculation – How to calculate your individualized threshold to determine continued eligibility for SSA’s 1619(b).
SSI Mobile Wage Reporting – A free Supplemental Security Income (SSI) Mobile Wage Reporting Application to report monthly wages.
Olmstead Rights – Includes information on Medicaid Waiver Long-term care services, and Consumer Directed Care.
Florida Long-Term Care Programs – Includes information on Medicaid Waiver Long-term care services, and Consumer Directed Care.
Advocacy 101 – Challenging an Agency’s Denial or Reduction of Your Medicaid Services – Explains the steps required to challenge a denial or reduction of a Medicaid State Plan or Medicaid Waiver service.
Self-Employment & Supported Self-Employment Handbook – A guide from the State of Florida’s Division of Vocational Rehabilitation.
Medicaid Waiver Programs in Ohio – General information about waiver programs provided by Disability Rights Ohio.
Ohio Rehabilitation/Opportunities for Ohioans with Disabilities – Offering assistance in the workplace, finding a job, reaching educational goals, personal care and other services that promote independence.
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AAPD (American Association of People with Disabilities) – A website offering resources, support and promotion of equal opportunity for people with disabilities.
ADAPT – A grassroots disability rights organization made up of activists fighting for disability inclusion.
National Organization on Disability – Non-profit that promotes inclusion of people with disabilities.
Families of SMA (FSMA) – Non-Profit offering research funding, opportunities and support for families of people with SMA.
Parent Project Muscular Dystrophy – Non-profit to advance and advocate for research and services into the needs of people with Duchenne MD.
FSH Society – Advocacy and support network for people with Facioscapulohumeral Muscular Dystrophy.
Muscular Dystrophy Family Fund – Advocates and educates on issues relating to MD. Also has offered funding for adaptive equipment and home modifications. Primarily helps those in Indiana, but if resources allow, willing to help outside the state.
John Kerr Foundation – The John Kerr Foundation is dedicated to meeting the needs of persons with Muscular Dystrophy (MD). It also has a Life-Enhancing Summer Retreat for young adults with MD.
Smart Ass Cripple – A great blog for laughs with a few lessons thrown in. Authored by Mike Ervin, a man with Spinal Muscular Atrophy.
Special Needs Trust – A guide to setting up a supplemental or special needs trust for a person with a disability in order to avoid jeopardizing government benefits.
Disability.gov – The federal government website for comprehensive information on disability programs and services in communities nationwide.
G3ict – The Global Initiative for Inclusive Information and Communication Technologies is an Advocacy Initiative of the UN GAID, the United Nations Global Alliance for ICT and Development.
WebAIM – One of the leading providers of web accessibility expertise internationally.
National Council on Disability – NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
World Institute on Disability (WID) – An internationally recognized public policy center seeking to eliminate barriers to full social integration and increase employment, economic security and health care for persons with disabilities.
The AbleGamers Foundation – The AbleGamers Foundation aims to improve the overall quality of life for those with disabilities through the power of video games.
Easy Does It Emergency Services, City of Berkeley – Easy Does It Emergency Services provides assistance to the elderly and individuals with disabilities living independently in the City of Berkeley.
Disability Benefits 101 – Tools and information on employment, health coverage, and benefits for Arizona, California, Michigan, Minnesota, Missouri, and New Jersey.
The Job Accommodation Network (JAN) – The leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues.
Adaptive Driving Mobility Guide – Mobility / Adapted Driving Guide from the Texas Talking Book Program Disability Information & Referral Center
Thomas – In the spirit of Thomas Jefferson, legislative information from the Library of Congress
Independent Living Research Utilization – ILRU, founded in 1977, has a long history of providing research, education and consultation in the areas of independent living, the Americans with Disabilities Act, home and community-based services and health issues for people with disabilities.
National Council on Independent Living (NCIL) – NCIL advances independent living and the rights of people with disabilities through consumer-driven advocacy.
National Disability Rights Network (NRDN) – NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.
ILUSA – News and political information of interest to people with disabilities.
Disability Rights Education & Defense Fund (DREDF) – DREDF is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.
Disability Rights Advocates (DRA) – DRA is one of the leading non-profit disability rights legal centers in the nation.
Bookshare – The world’s largest online library of accessible reading materials for people with print disabilities.
TeleStik reacher – Portable reach that allows you to retrieve hard-to-reach items without requiring significant grip strength or dexterity.
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Wheelchair Ramps – Carries wheelchair and scooter ramps for loading your scooter or wheel chair into a vehicle, threshold ramps, and modular ramps for access to homes and buildings.
Long Term Care Supports Report – A comprehensive approach to long-term services and supports from the Long-Term Care Commission.
The ROHO Group – ROHO seat cushions and other medical products conform to each user’s individual body shape and continuously self-adjust with every movement, enhancing blood flow and supporting posture.
The Mobility Resource Blog – Topics include stories about individuals with disabilities and interesting finds in the world of assistive technology.
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No Muscles No Limits Forum – A great forum created by folks on the Living with MD Facebook page.
** Forum linked above seems outdated**