View Full Version : Why is it so hard to get disability for Lupus?

09-21-2006, 11:40 AM
I used to be a school teacher before a major injury. But when I worked, (and believe you me, there were plenty of days that I went into school sick as a dog) there were plenty of days that I just couldn't go in. Every year, the principal would cry and say that I was one of the best teachers they'd ever met, but they couldn't renew my contract due to the absences. This happened in the last 4 schools I worked for, before my accident.
How do the rest of you cope on the job? Is anyone on disability? What is involved with getting a disability rating? I think my doctor would be very supportive, but I am unsure how to go about this. Thanks to all who reply, and God Bless.

09-21-2006, 02:49 PM
Are you interested in applying for social security disability, or are you eligible for some type of short or long-term disability through your employer or a private policy? If you are applying for some type of private disability policy, then your eligibility would depend on that policy's criteria and requirements.

If you are interested in applying for Social Security Disability, it is a federally funded program run by the Social Security Administration. You may be eligible for SSD if you have worked and paid into the Social Security system for a certain number of quarters (the 3-month periods used to report taxes and income) - and if you have a disabling medical condition which prevents or is likely to prevent you from working for at least a year. Some people think this means you have to be off work for a year before you can apply for SSD, but this isn't true. The disabling condition just has to be serious enough to prevent you from working for at least a year.

If you haven't worked enough to qualify for SSD, you may be eligible for SSI, which is a different program based on income and medical need. The income guidelines vary from state to state, and are generally pretty strict. People with certain medical conditions may qualify for SSI automatically.

You can pick up the applications for both SSD and SSI at your local Social Security office, or go the SS website at sss.gov/disability. These forms are very detailed, so you will probably need to have copies of your medical records from all your doctors in order to fill them out. it's important to know beforehand whether or not your doctor will support your claim. Note that there is really no such thing as a "disability rating" for purposes of SSD - this only applies in worker's compensation or civil negligence cases. For purposes of SSD, you are either disabled from working, or not disabled - there is no middle ground.

Under the Social Security Act, "disability" means "inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months." Basically, this means you are unable to do any kind of work 8 hours per day, etc. - not just the type of job you normally do. If there is any job in the competitive market which you could do 20-40 hours per week, then for SSD purposes you aren't disabled. These standards are relaxed somewhat for people over 50, or people with no job skills other than manual labor. That is why younger and better educated people often have difficulty getting SSD.

After you file a Social Security disability claim, the case is sent to a disability examiner at the Disability Determination agency in your state. This individual, working with a doctor, makes the initial decision on the claim. If the claim is denied and you request reconsideration, the case is then sent to another disability examiner at the Disability Determination agency, where it goes through much the same process. If a claim is denied at reconsideration, you may then request a hearing. At this point, the case is sent to an Administrative Law Judge who works for Social Security. The Administrative Law Judge makes an independent decision upon the claim. During the process, the SSA may make their decision "on the record" based on the documents and evidence you have sumbitted, or they may request a "consultative exam" by a doctor. If you doctor is willing and has the appropriate medical qualifications, he can be your consultative physician.

The SSA's medical decisions are based on the SSA "Blue Book" - Disability Evaluation Under Social Security - which is available in hard copy form and on-line. If your medical condition is a listed impairment in the blue book - you may automatically be determined disabled. If you have several medical conditions which are not disabling individually, but the combined effect is disabling - you may qualify under a "combination of impairments" determination. This is why it's important to list all your medical problems and symptoms when you apply.

Lupus is listed in the blue book as 14.02, systemic lupus erythmatosus, under the category of immune system impairments. However, the lupus listing is also different from most other listings because it refers mainly to other listings, so you have to do a lot of cross-referencing

Here's how the listing actually reads:
14.02 Systemic lupus erythematosus. Documented as described in 14.00B1, with:

A. One of the following:

1. Joint involvement, as described under the criteria in 1.00; or

2. Muscle involvement, as described under the criteria in 14.05; or

3. Ocular involvement, as described under the criteria in 2.00ff; or

4. Respiratory involvement, as described under the criteria in 3.00ff; or

5. Cardiovascular involvement, as described under the criteria in 4.00ff or 14.04D; or

6. Digestive involvement, as described under the criteria in 5.00ff; or

7. Renal involvement, as described under the criteria in 6.00ff; or

8. Hematologic involvement, as described under the criteria in 7.00ff; or

9. Skin involvement, as described under the criteria in 8.00ff; or

10. Neurological involvement, as described under the criteria in I 1.00ff, or

11. Mental involvement, as described under the criteria in 12.00ff.


B. Lesser involvement of two or more organs/body systems listed in paragraph A, with significant, documented, constitutional symptoms and signs of severe fatigue, fever, malaise, and weight loss. At least one of the organs/body systems must be involved to at least a moderate level of severity.

The lupus listing allows for a wide range of discretion on the part of disability examiners and judges. As paragraph A states, a claimant with a properly documented lupus diagnosis can be awarded benefits on the basis of satisfying certain body system-specific criteria. However, a disability claimant can also be awarded benefits via the criteria specified in paragraph B.

Paragraph B of the lupus listing allows a bit of "wiggle room" for claimants who are unable to meet the exact criteria for any one body system. However, paragraph B also "ups the ante" by requiring that medical documentation be shown for 2 body systems (as opposed to just one body system in paragraph A). This is part of the reason why establishing lupus as a disabling condition is so complicated.

There are a couple of books about applying for disability designed just for lupus patients - you might want to purchase one or the other, but I hope I've answered the basic questions.

09-21-2006, 05:33 PM
Can I be your new best friend. Wow. You just answered so many of my questions, and so distinctly...and in layman's terms. I am now officially putting you in for Sainthood. Thank you! I'll keep you posted.

09-25-2006, 06:47 AM
I think we need a group to go to Congress and talk about this. It's ridiculous the red tape we must go through in the condition we are in.

09-25-2006, 07:08 AM
that will supposedly streamline the process and eliminate at least some of the red tape - these rules are already in effect for the Boston Region of the SSA, which is a six state area of New England, but theydon't go on effect in the rest of the country until sometime next year. So I guess we will have to wait and see if they actually improve the process!