Community Forum

social security disability and SSI

I am interested in learning about Social Security Disability and/or SSI for people with epilepsy. For a 35 year old with some, but limited work experience, but with the possibility of part-time employment at some point, what are the pros and cons of obtaining disability coverage? Any information about your experience with this coverage would be appreciated.


Hi Peter Bloom,

In order to process the large number of SSDI & SSI claims, the SSA administers SSDI with the help of a five-step procedure that embodies a set of presumptions about disabilities, job availability, and their interrelation. The SSA asks:

Step One: Are you presently working? (If so, you are ineligible.) See 20 CFR § 404.1520(b) (1998).

Step Two: Do you have a “severe impairment,” i.e., one that “significantly limits” your ability to do basic work activities? (If not, you are ineligible.) See §404.1520(c).

Step Three: Does your impairment “mee[t] or equa[l]” an impairment on a specific (and fairly lengthy) SSA list? (If so, you are eligible without more.) See §§404.1520(d), 404.1525, 404.1526.

Step Four: If your impairment does not meet or equal a listed impairment, can you perform your “past relevant work?” (If so, you are ineligible.) See §404.1520(e).

Step Five: If your impairment does not meet or equal a listed impairment and you cannot perform your “past relevant work,” then can you perform other jobs that exist in significant numbers in the national economy? (If not, you are eligible.) See §§404.1520(f ), 404.1560(c).

These steps are listed, and further explained, in the relevant Code of Federal Regulations (CFR) at:

The SSDI & SSI listings in "Appendix 1" more specific to epilepsy are:


Part A: Criteria applicable to individuals age 18 and over and to children under age 18 where criteria are appropriate


A. Epilepsy. In epilepsy, regardless of etiology, degree of impairment will be determined according to type, frequency, duration, and sequelae of seizures. At least one detailed description of a typical seizure is required. Such description includes the presence or absence of aura, tongue bites, sphincter control, injuries associated with the attack, and postictal phenomena. The reporting physician should indicate the extent to which description of seizures reflects his own observations and the source of ancillary information. Testimony of persons other than the claimant is essential for description of type and frequency of seizures if professional observation is not available.

Under 11.02 and 11.03, the criteria can be applied only if the impairment persists despite the fact that the individual is following prescribed antiepileptic treatment. Adherence to prescribed antiepileptic therapy can ordinarily be determined from objective clinical findings in the report of the physician currently providing treatment for epilepsy. Determination of blood levels of phenytoin sodium or other antiepileptic drugs may serve to indicate whether the prescribed medication is being taken. When seizures are occurrring at the frequency stated in 11.02 or 11.03, evalution of the severity of the impairment must include consideration of the serum drug levels. Should serum drug levels appear therapeutically inadequate, consideration should be given as to whether this is caused by individual idiosyncrasy in absorption of metabolism of the drug. Blood drug levels should be evaluated in conjunction with all the other evidence to determine the extent of compliance. When the reported blood drug levels are low, therefore, the information obtained from the treating source should include the physician’s statement as to why the levels are low and the results of any relevant diagnostic studies concerning the blood levels. Where adequate seizure control is obtained only with unusually large doses, the possibility of impairment resulting from the side effects of this medication must be also assessed. Where documentation shows that use of alcohol or drugs affects adherence to prescribed therapy or may play a part in the precipitation of seizures, this must also be considered in the overall assessment of impairment level.


11.01 Category of Impairments, Neurological

11.02 Epilepsy—convulsive epilepsy, (grand mal or psychomotor), documented by detailed description of a typical seizure pattern, including all associated phenomena; occurring more frequently than once a month in spite of at least 3 months of prescribed treatment. With:
A. Daytime episodes (loss of consciousness and convulsive seizures) or
B. Nocturnal episodes manifesting residuals which interfere significantly with activity during the day.

11.03 Epilepsy—nonconvulsive epilepsy (petit mal, psychomotor, or focal), documented by detailed description of a typical seizure pattern, including all associated phenomena; occurring more frequently than once weekly in spite of at least 3 months of prescribed treatment. With alteration of awareness or loss of consciousness and transient postictal manifestations of unconventional behavior or significant interference with activity during the day.

(Appendix 1, and the subsections involving epilepsy on pages 501 & 503, is at: ).

"Step 5" involves much of the concept of "Residual Functioning Capacity", with SSDI & SSI having much the same
descriptions in the CFR:


And for SSI, somewhat more plainly:

With epilepsy and with the anti-epileptic drugs, the co-morbid impairments and drug side-effects (like poor memory, anger, migraines (both painless and painful), etc.) often are more disabling than the epilepsy and seizures themselves. It was my experience with the Social Security Administration that SSDI/SSI considerations tend to try to avoid recognizing these very important elements in disability evaluations, and it is important to cite these elements and their severity at every opportunity during doctor evaluations and the administrative evaluations.

I tried to get a federal job through the Rehab department and court actions, and when I started "exhausting my administrative remedies" with Rehab, and was preparing to file suit in federal court, the SSA canceled my administrative law judge hearing for social security disability determinations, while ruling that I was then indeed disabled by their more strict standards.

I had worked "too much" for drawing SSDI on my parent's social security, but I didn't have enough income earning points for my own social security SSDI, and technicalities over obtaining very old medical records proved frustrating. For SSI, my counted assets were well below the maximum limits, but they deducted a proportion of "household" living expenses (one-third or one-fourth of the federal payment amount?) assumed paid by other people/entities during the administrative disputes & processes. All the $$$$ technicalities are in the CFR too, but finding them and then understanding them is much of a nightmare in itself.



I can't thank you enough for your posting. I am starting the SSDI. With your extensive information, you have shown that I should qualify. 

There are only 2 other things I would like to add. These were suggested to me through Meningioma Momma's website. (yes I am a brain tumor survior. LOL was only given the gift, post-surgically,of life long epelipsy that cost me my job.

1) Documentation- get copies of everthing. Labs, test, dr. notes, surgery notes, etc.

2) Write a brief summary. What your career details, how your disability affects your career & life.



The pros to being on SSD and SSI are:
1. You get some money to support yourself.
2.If your current income is low enough, you can also receive food stamps and medicaid.
3. It enables you to feel a little more independent because you're no longer relying on family or friends for money.

The cons are:
1. Trying to find doctors that take medicaid or medicare.
2. You have to pay for medicare, and medicare doesn't cover as much as regular health plans.
3. You don't get as much money as if you were working, it's just enough to live off of if you watch how it's spent.

Overall, I don't mind being on SSD. It's helped me out a lot.

This article may help:

Social Security Claims — Winning Secrets

Phylis Feiner Johnson

If you have limited work experience, you should apply for SSI since that will not take your work history into account.

Hi Peter,

I have been onn SSDI for about 6 years. The comments by Tadzio are very well documented. As for myself,

I have had epilepsy since 1971. During those years I took medicine (although for about 2 years I took none.)

My seizures are somewhat atypical because of a tumor removal; they are simple partial with TLE qualities. Over the yeras I just continued to live with it. They did affect my work experience. Eventually I took temporary jobs. Over the years I would sometimes get lost going to work, be stressed out on the different jobs and have seizures (sometimes on the job). The side effcets of medicine added negatively.

My points here are:

. It is very very very difficult to get on SSDI. You need all of the documentation as regards records of tests, doctors evaluations, medicines, EEG tests, witness reports and on... It was rather humiliating because it took so long for the doctors reports to agree on everything, since my symptoms had different qualities as to my temporarl lobe.

. The fact that I had held many many jobs, even though of short duration caused them to resist and question. They even telephoned me and had long questions.  It did not matter to them that at least four different friend and professionals told me to apply. The application process took more than 9 months.

. The amount of money I was alllocated was so very very very small that it is impossible to live on.

. I would not dissuade you from applying. Since being on SSDI personally it has reduced my self-esteem very greatly and my ambition. I know that I am allowed to work on a Back to Work ticket (which SSDI hopes you will get off of SSDI as a result), but finding that PT job that pays just $400 per month is hard.

Do apply though since you qualify but keep some of things in mind.

Best wishes,


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