Understanding Hashimoto's Encephalopathy 2016 Edition:
An Expanded and Updated Guide For Patients, Families, and Caregivers
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APPLYING FOR SOCIAL SECURITY DISABILITY (United States)

Many patients with Hashimoto’s encephalopathy often experience severe neurological impairments, causing them to suffer complete disability. In the United States, the Social Security Administration provides disability benefits for those who cannot work due to “a medical condition that is expected to last at least one year or result in death.”

In our page, “Symptoms”, we talk about few of the initial symptoms that HE/SREAT patients may experience as part of the onset of their illness. After diagnosis and treatment, some of these symptoms may persist or patients may experience additional symptoms or difficulties which effect quality of life and daily function.

The following links provide helpful information for HE/SREAT patients in the United States who have become too disabled to work and wish to seek disability benefits from the Social Security Administration.

This is in no way an exhaustive guide to disability benefits in the U.S., U.K, or Canada.

 

Disability Evaluation Under Social Security
Part I – General Information

Disability Evaluation Under Social Security
14.00 Immune System Disorders – Adult

Disability Evaluation Under Social Security
Part II – Evidentiary Requirements

Disability-Related Publications Available Online from the SSA

Also, this link from Money Saving Expert may be a useful resource for those looking for an easy-to-understand guide to the process.

https://www.moneysavingpro.com/blog/ultimate-guide-to-social-security-disability-benefits/

 

Applying for Disability Assistance (“Personal Independence Payment”) – United Kingdom

On the 8th April 2013, the Personal Independence Payment (PIP) replaced Disability Living Allowance (DLA) for people aged 16 to 64 with a health condition or disability in the United Kingdom.  Anyone over the age of 16 but under the age of 65 will need to apply for PIP instead of DLA.

Gov.uk  states that a new DLA claim can be made if you are claiming for someone under the age of 16 (known as “DLA for Children“) .

You may be able to claim if you are over 65 years of age.

For UK patients diagnosed with HE/SREAT (or other autoimmune “encephalitis” or encephalopathies), you may find additional information and guidance by contacting Citizens Advice via their website or telephone.

 For those in the UK  and Northern Ireland, you may contact Citizens Advice on 03454 04 05 06. Welsh-speaking patients can contact Citizens Advice at 0354 04 05 05. Telephone lines are open from 9 am to 5 pm GMT. Please consult their website, https://www.citizensadvice.org.uk for more information on their hours of operation and additional contact details.

Overview of the PIP system from Gov.UK

Applying for Disability Assistance

(“Pension Plan Disability Benefits”)

– Canada

Canada has a system that may be similar to the Social Security, called “Canada Pension Plan” (CCP). This is a taxable benefit to those who have paid into CCP throughout their working life (much like Social Security) and who are unable to work at any job due to disability. For more information on the terms of CCP, please visit the Disability Benefit page on www.servicecanada.gc.ca.

You can find out more about CCP benefits via the links below.

Disability Benefits – Canada

Sickness Benefits Information

Some additional resources for patients for navigating Social Security Benefits in the United States specific to brain injury or neurological diseases.

 

Last edited by Web Team on July 8th, 2015

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AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.


The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."


Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."


Mark2Cure
Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.


RareConnect.org
"Connecting Rare Disease Patients Globally"


RareDisesases.org
"Alone we are rare. Together we are strong.®"


Contact a Family
"For families with disabled children."


Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.


NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.


HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.