Sometimes even the best accommodations at work aren’t enough to help you keep your job when you have epilepsy. “I can get a job, but I just can't keep it,” said one MyEpilepsyTeam member in regards to unpredictable seizures. Loss of consciousness, convulsive seizures, and the sleepiness that follows many epileptic seizures can be too much to continue working.
When people with epilepsy can no longer work, many in the United States seek Social Security disability benefits. Disability benefits help replace lost income when people with epilepsy have to leave their jobs. “When work caused too much stress that caused my seizures, I knew it was time to apply for disability,” a MyEpilepsyTeam member wrote.
The process of applying for a disability claim can feel intimidating. Filing an appeal for a rejected claim can also prove challenging. Understanding the process ahead of time, including what the U.S. Social Security Administration (SSA) considers to determine disability, can ease the process.
There are two different federal disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). To qualify for either, you must have a disability that limits your ability to work.
Funded through payroll taxes, SSDI gives disability benefits to those who have held full-time jobs in the recent past. If you are approved, you can receive benefits in the sixth month following your disability designation. You will then be eligible for Medicare 24 months after you became disabled.
SSI gives disability benefits to those who are considered low-income; a work history is not a requirement. Once you are approved, you should start to receive benefits in the next month. You may also be eligible for SSI back payments if you became disabled prior to your approval.
In most states, if you qualify for SSI, you are also eligible for Medicaid. In some states and territories — Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands — you will need to apply for Medicaid and SSI separately, though the requirements for both are the same. “Where I live, to receive Medicaid, you have to be working but stay under a certain income,” one MyEpilepsyTeam member shared.
“It is possible to work,” another member said. “But you would have to talk to the Social Security Administration specialist and find out how many hours you can work without getting fined or losing the Social Security benefits.”
Eligibility criteria for SSI recipients varies across states.
Almost every state provides an SSI supplement, with exceptions including Arizona, Mississippi, North Dakota, and West Virginia. The eligibility rules for supplements vary by state.
There is an asset (or “resources”) cap for receiving Supplemental Security Income. Individuals with more than $2,000 of assets and couples with more than $3,000 in assets lose eligibility. The SSA has a list of which resources are considered. Your home, household belongings, and one personal vehicle are not factored into the total.
If you have very limited funds and a work history, you may be eligible to receive SSDI and SSI.
In determining your eligibility for disability benefits, the Social Security Administration will evaluate the following criteria:
People with epilepsy face considerable paperwork when applying for disability benefits. The Social Security Administration offers a checklist of necessary application information. Below is a summary of what you’ll need to provide.
Members of MyEpilepsyTeam shared their application experiences. “If you can't find all the paperwork, [it] helps if you recall where you were hospitalized and when,” one member wrote.
Some MyEpilepsyTeam members faced obstacles in documenting their symptoms. “The SSI people need proof (in person) of your disability. The problem is, seizures are random,” wrote one member.
“My seizures are very controlled, about 3-4 per year, and I don't qualify,” another MyEpilepsyTeam member disclosed.
You can apply for SSDI online if you:
If you don’t meet any of those criteria, you can still apply at a local Social Security office or over the phone.
Processing an application for disability benefits takes an average of three to five months. It can take even longer to get approved.
Most people are not approved the first time they apply. From 2009 through 2018, only 21 percent of applicants were approved on their first attempt. If you are denied the first time, you can appeal the decision. This is a simple process, and your case will be evaluated by someone who did not evaluate your application the first time. Only around 2 percent of these initial appeals were successful from 2009 to 2018.
If necessary, you have the option to file a second appeal. The second appeal includes a hearing by an administrative law judge, trained in disability laws, who will consider all of your evidence.
You may have a disability attorney represent you at this hearing. Some law firms even specialize in disability cases. A MyEpilepsyTeam member recommended enlisting legal counsel early on: “[The appeals process] can take a long time. The only way to get it done quicker is to hire an attorney and stop trying to do it yourself. “
If you are denied at this level, you can ask the Appeals Council to consider and rule on your case. About 8 percent of SSDI claims between 2009 and 2018 were approved during a hearing with an administrative law judge or the Appeals Council.
If your claim is again denied, the final remaining option is a federal court hearing. One MyEpilepsyTeam member had to go this route: “I was denied three times, then went to the federal level, and I got it.”
Waiting for approval of your disability benefits can be stressful. MyEpilepsyTeam members have shared advice on how to cope with the evaluation process and tips on getting approved.
If you’d like to research more about disability benefits in countries outside of the United States, check out these resources, listed by country:
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. More than 109,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.
Have you applied for Social Security disability benefits for epilepsy? Do you have any advice about the process? Comment below or start a conversation on MyEpilepsyTeam.