How to Get On A self-advocacy guide for anyone who is homebound or bedbound in the US. Special focus on folks with Myalgic Encephalomyelitis (sometimes called “Chronic Fatigue Syndrome”). If you are not lucky enough to have ME or CFS, you are still welcome to use this guide. Enjoy! 💛 💚 💝 🍭
Suggestions from Dysautonomia International
"Financial Assistance Resource Directory" "The Reflex Sympathetic Dystrophy Syndrome Association has an excellent comprehensive Financial Assistance Resource Directory for persons with chronic medical conditions. It includes information on federal, state, faith-based and non-profit resources available to disabled persons in the United States."
"National Financial Resource Directory" "U.S. residents can obtain information on financial resources available for various health conditions, prescription co-pay assistance, assistance with housing and nutrition, scholarships for students with disabilities and more."
"Social Security Disability Tips" "This flyer provides tips from the National Organization os Society Security Claimants Representatives. You can also find more helpful information on their website, including a hotline to call for a referral to an attorney who has experience in social security claims."
"Patient Advocacy Tips" "Dysautonomia International volunteers have compiled these tips for patients. You can teach yourself to be a better advocate for yourself. After all, who cares about YOU more than YOU?"
"Patient Advocate Foundation" "Persons with life threatening or chronic illnesses can obtain free assistance from experienced patient advocates. They offer information regarding co-pay assistance, resources for uninsured or underinsured patients, dealing with insurance denials, COBRA coverage, Family Medical Leave Act, disability accommodations and more."
"Know Your Rights" "This legal guide was developed by the National Multiple Sclerosis Society, but most of the material is just as relevant to people living with dysautonomia as it is to people living with Multiple Sclerosis. The guide covers Social Security Disability, employment accommodations under the American's with Disabilities Act, family law matters and more."
"Crisis Hotlines" "Living with a dysautonomia and other chronic illnesses can cause emotional strain on individuals and families. If you are in crisis, please reach out for help. There are many people who want to help you."
The information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice. ME International is a 501(c)(3) nonprofit and is listed as a nonprofit corporation with the state of Colorado.
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