Resources to help those who have AE/HE
**These are merely suggestions and not guaranteed resources**
RESOURCES FOR THOSE WITH AN AE
We can all use ideas and resources to help make living with autoimmune encephalitis easier in a lot of ways. We
have asked our community to suggest ideas.
If you have a resource that you would like to share please contact us!
Private Organizations
Provides free medical flights to specialized care and second opinions for children. “To provide free commercial flights to those in need of life-changing medical care, not found in their local communities.”
Meal Train helps to organize meals for a friend after birth, surgery, or illness.
"One out of every five Americans lives with a disability. The Dreamscape Foundation is actively working to ensure that anyone who lives with this struggle is provided with the tools and resources needed to meet their educational, employment, and independent living goals. We use the legal framework of the Americans with Disabilities Act to build the scope of our work while diving more deeply into achieving the following goals."
Center For Independant Living (CIL)
CIL: A consumer controlled, community based, cross-disability, non residential private nonprofit agency that is designed and operated within a local community by individuals with disabilities and provides an array of independent living services.
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A minimum of 51% of a CIL staff is persons with disabilities who provide, at a minimum, the following core services:
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Information & referral
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Independent living skills training
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Individual and systems advocacy
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Peer counseling
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Transition assistance from nursing homes and other institutions to community-based residences
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Assisting individuals to avoid institutional placement
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Transition of youth with significant disabilities after completion of secondary education to postsecondary life.
Founded in 1981, Mobility International USA (MIUSA) is a disability-led non-profit organization headquartered in Eugene, Oregon, USA advancing disability rights and leadership globally.® By implementing innovative programs, we are building bridges to create a new era where people with disabilities will take their rightful place in the world community. MIUSA is a cross-disability organization serving people with a broad range of disabilities.
Medical ID Bracelets
"In an emergency, communicating details of your medical conditions, medications, and allergies may be hindered by the severity of an injury you have sustained. First responders may have found you in an unresponsive or confused state. A medical ID is a simple and effective way to communicate vital information to paramedics or EMTs. Medical IDs can speak for you in emergency situations where you could feel distressed, confused, or become unconscious, incapacitated, and unable to advocate for your own health."
Service & Therapy Dogs
NEADS Service Dogs For Children
NEADS has two Service Dog programs for children. Our Social Dog program is for children ages 8-16 with autism or other developmental disabilities. Our Facilitated Service Dog program is for children ages 12 and up with physical disabilities. Read about the programs below, and then contact us to start the application process.
An Assistance Dog helps someone with a disability complete essential tasks so they can increase independence and improve their quality of life. By helping open doors, pick up objects, pull a wheelchair or alert them to sounds, barriers are broken down. The Assistance Dog acts as a constant companion and makes a person more approachable, allowing them to gain confidence while bringing peace of mind to their loved ones.
Paws With A Cause breeds and custom-trains Assistance Dogs for people with physical disabilities, hearing loss, seizures and autism.
A service dog is trained to assist individuals with disabilities so that they are more able to participate in day to day activities. Service dogs can bring a sense of freedom to their partners 24 hours per day, 365 days per year. A person partnered with a service dog has full public access rights as granted by federal law (The Americans With Disabilities Act), which allows them to take their dog into all public facilities. That way, service dogs are never separated from their human partners!
ATD provides testing, certification, registration, support, and insurance for members who volunteer with dogs to visit hospitals, special needs centers, schools, nursing homes, and other facilities. We’re a network of caring volunteers who are willing to share our special canines to bring smiles and joy to people, young and old alike.
Whether you and your dog are looking to become a certified therapy team or your facility would like to start a therapy dog program, Alliance of Therapy Dogs (ATD) is your #1 choice for pet therapy.
What is Therapy Dogs International? Therapy Dogs International (TDI®) is a volunteer organization dedicated to regulating, testing and registration of
therapy dogs and their volunteer handlers for the purpose of visiting nursing homes, hospitals, other institutions and wherever else therapy dogs are needed.
Government Organizations
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. NCD is comprised of a team of Presidential and Congressional appointees, an Executive Director appointed by the Chair, and a full-time professional staff.
Government Disability Program (Federal and State)
If you have a disability, learn how government programs and services can help you with daily life.
US Department of Health and Human Services
The mission of the U.S. Department of Health and Human Services (HHS) is to enhance the health and well-being of all Americans, by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.
Independant Living Research Utilization
ILRU is a national center for information, training, research, and technical assistance in independent living. ILRU staff--a majority of whom are people with disabilities--serve independent living centers, statewide independent living councils, state and federal rehabilitation agencies, consumer organizations, educational institutions, medical facilities, and other organizations involved in the field, both nationally and internationally.
Pill Organizing
Pill organizer: AUVON iMedassist Weekly AM/PM Pill Box
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. NCD is comprised of a team of Presidential and Congressional appointees, an Executive Director appointed by the Chair, and a full-time professional staff.
MedCenter Monthly Medication Organizer
Helps to organize your pills and when to take them
Mood Tracking App
Bearable Symptom and Mood Tracking App
Available at the apple.com store
Noise Reducing Ear Plugs
Eargasm High Fidelity Earplugs
Available on Amazon. Cut out excess sound from everyday life and your favorite activities.
Infusion Apparel
Shirts designed by an oncology nurse working alongside of her patients in a treatment center. Patients were complaining of uncomfortable clothing during their treatments due to the difficulty of accessing their ports
Made with dual zippers, works for the left and right side. Covered zippers that protect your skin. Easy care, wash and wear
Inspired Comforts Dialysis Port Access Pullover Hoodie with Two Way Arm Zips
Men and Women, 100% Cotton, Zipper closure, Specially designed to provide easy arm dialysis access while maintaining elegance and privacy. Soft and comfortable 100% cotton material, ideal for those cold moments during treatment and for cold hospital environments, Two way. Zips allow for easy access to ports anywhere on the arms.
Inspired Comforts Dialysis Port Access Pullover Hoodie with Two Way Arm Zips
Men and Women, 100% Cotton, Zipper closure, Specially designed to provide easy arm dialysis access while maintaining elegance and privacy. Soft and comfortable 100% cotton material, ideal for those cold moments during treatment and for cold hospital environments, Two way. Zips allow for easy access to ports anywhere on the arms.
Cotton Blend, Snaps closure, Tumble dry low, STYLISH DESIGN, COMFORTABLE PATIENT CLOTHING. Ideal for post-surgery, wearing a sling for a cast, chemotherapy, physical therapy, dialysis, or sports injuries like rotator cuff surgery.
DISCREET EASY SNAPS TO DRESS AND UNDRESS WITH EASE, for port access and medical treatments. Hidden openings with easy snaps allow to go through many medical procedures without removing your clothes. No velcro, hard to close buttons or uncomfortable zippers.
Dialysis & Shoulder Surgery Recovery Full Sleeve Shirt with Shoulder & Arm Snaps
Unisex, Snaps closure, Discreet and easy access to arms and shoulders via hidden snaps
Designed for dialysis, shoulder surgery recovery and IV or drain access post surgery, Maintain privacy and style while also remaining warm and comfortable, Lightweight snaps and 100% cotton material ensures a comfortable fit, one size up recommended in case of bandages or swelling, Unisex sizing suitable for men and women, womens sizes run one size smaller than listed.
Inspired Comforts Dialysis Port Access Pullover Hoodie with Two Way Arm Zips
Unisex, 100% Cotton, Zipper closure, Specially designed to provide easy arm dialysis access while maintaining elegance and privacy
Soft and comfortable 100% cotton material, ideal for those cold moments during treatment and for cold hospital environments
Two way Zips allow for easy access to ports anywhere on the arms, Carefuly placed cloth layers ensure no zip on skin contact