• Different types of disability benefits are available for people with epilepsy who qualify.
• Applications for disability depend on your inability to work.
• You may appeal if you are denied disability benefits.

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.

Disability Benefit Programs in the United States

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.

Defining Disability

In determining your eligibility for disability benefits, the Social Security Administration will evaluate the following criteria:

• You are likely ineligible for benefits if you earn $1,260 or more a month. If you earn less, you may still be eligible; the amount you receive may be reduced.
• You must be incapable of performing basic tasks required for most jobs, including standing, walking, lifting, sitting, and remembering. You must not have been able to perform these tasks for at least 12 months.
• You must have a recognized disability. The Social Security Administration provides a Listing of Impairments that prevent working. Epilepsy is on the list, under Neurological Disorders. You can still be eligible even if your specific medical condition isn’t listed.
• You must be unable to perform any work you’ve done previously. A work history is not a prerequisite for receiving SSI.
• You must be unable to engage in what the SSA calls “substantial gainful activity.” The Social Security Administration will consider your diagnosis, age, medical history, education, and work history, as well as any other marketable skills.

Applying for SSDI and SSI

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.

Information About Yourself and Your Family

• Your full legal name, date of birth, and Social Security number
• Full names and dates of birth of your current or previous spouses, and dates of marriage, divorce, or death
• Full names and dates of birth of your children
• Bank account information

Medical Evidence About Your Epilepsy

• The name and contact information for your neurologist and other medical providers who can discuss your condition and the type of seizures you have (e.g., tonic-clonic, absence, complex partial).
• A complete list of medications, both past and present, along with any side effects you’ve experienced from them, as well as results for medical tests such as CT scans, MRI, and EEGs.
• A description of how epilepsy impacts your ability to do activities like shopping, cooking, cleaning, and other tasks of daily living.

Total Employment History

• Earnings from the past year
• Any current employers or ones you have worked for in the past two years
• A complete work history from the last 15 years, including any jobs from before you became disabled
• Whether you are getting or intend to receive workers’ compensation
• Dates of any military service

Documents

• Birth certificate
• Social Security card
• Proof of citizenship
• W-2 or other tax forms from the previous year
• Any medical records about your condition
• Proof of any workers’ compensation you have received

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:

• Have never been married
• Were born in the United States
• Are between 18 and 65
• Are not currently receiving benefits

If you don’t meet any of those criteria, you can still apply at a local Social Security office or over the phone.

Appealing a Disability Application Rejection

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.

• “One of the most important things is to have a lot of documentation. [Document] everything on your condition.”
• “Any doctor that you've seen who knows and has files on your epilepsy, get a copy of it all. They need proof that you have this disorder.”
• “Be sure the doctors explain the diagnosis and how it limits/affects [your ability to work].”
• “You may have to hire a lawyer briefly when you apply; it will just speed things along.”
• “Send a letter when you reapply telling them how much it affects your life in every way.”
• “Keep trying, and tell your neurologist or family doctor — when filling out the papers — everything you can that is going wrong in your life.”

Consider These International Resources

If you’d like to research more about disability benefits in countries outside of the United States, check out these resources, listed by country:

• Australia — Payments for People Living With an Illness, Injury, or Disability
• Canada — Disability Benefits
• Denmark — Disability Pension
• Finland — Disability Pension
• Great Britain — Personal Independence Payment (PIP)
• Iceland — Disability Pension in Iceland
• Ireland — Operational Guidelines: Disability Allowance
• The Netherlands — Invalidity Benefits
• New Zealand — Disability Allowance
• Norway — Disability Benefit
• South Africa — Old Age, Disability, and Survivors
• Sweden, UK — Benefits for People With Disabilities

Get Support From People Who Understand

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.