Social Security Disability and Lupus: What You Should Know

One of the potential challenges of living with lupus is maintaining a successful work life. Fatigue, pain, and other symptoms can make it difficult to make it through a typical workday. The Social Security Administration (SSA) offers financial assistance to those who meet their legal definition of "disability." This is a strict definition -- it means that you are "unable to do any substantial work because of your medical condition." In 2004, this income could not exceed $840 per month. Also, your medical condition must have lasted - or have been expected to last - at least one year, or until the time of your death as a result of your condition. If you feel that you cannot maintain substantial employment, it is important to understand the potential benefits, what the process involves, and where you can get the help you need to make those benefits a reality.

First, it is important to note that the system is designed for those with long term disabilities. Secondly, when the SSA uses the word disability, they are referring to those for whom there is no form of work they could possibly manage. This does not include those for whom it's impossible to manage a job held prior to the disability. Both of these realities can make it difficult to prove a disability claim due to lupus, because the symptoms can vary so greatly in type and severity. 

Who can receive Social Security payments?

Persons over 65 with the required work history automatically qualify for Social Security retirement. Those under 65 may receive either Social Security Disability Insurance (SSDI, often referred to as SSD or disability) or Supplemental Security Income (SSI).

SSD:  This program is for blind and disabled workers under age 65, their disabled surviving spouses, and disabled children under the age of 22. The amount of the payment is based on previous work history; in order to receive disability payments, a person must have worked 5 of the last 10 years. People who receive SSD are also entitled to Medicare after two years. This can be very difficult for people, as they have clear medical needs and must find a way to pay for medical services for those two years. SSD awards range from $617 to $1800 per month (as of the date of this presentation).

SSI:  Payments are made based on a person's income (not their work history) for those who fit the same legal definition of disability as for SSD. Medicaid coverage begins immediately. It is important to know that Medicaid benefits are often enhanced by individual states, so actual benefits vary from state to state. SSI awards can be up to $617 per month (as of the date of this presentation).

Necessary Information When Applying For SSD

What they need from your doctor:

The SSD application process involves a strong commitment from your doctor, who must submit all of the following patient information. If you are able to obtain a letter from your doctor, it will be helpful to go to your local Social Security office with this letter in-hand. You may also want to bring your social security card with you.

1. Name and Address
2. Medical History
3. Employment History (the doctor must report - to the best of his or her knowledge - the last date the patient was employed and the emotional/physical demands of the patient's duties)
4. Diagnosis, including onset date and cumulative effects
5. All test results, including labs, MRIs, x-rays, etc.
6. Course of treatment: past, present and future
7. Subjective complaints, such as pain
8. Duration of condition (must be 12 months or more)
9. Strength of medications: side effects are important to report, as they can inhibit working ability. Examples are dizziness and nausea.
10. Functional limitations, such as standing, walking, bending, lifting, stooping, lifting, climbing stairs, tolerating stress, etc.
11. Ability of the patient, in the doctor's opinion, to engage in any substantial, gainful employment, defined by the Social Security Administration as being able to earn $530 per month (as of the date of the presentation).

When the doctor submits this information, s/he must include his or her own qualifications as well. These include:

1. Place of practice
2. Specialty
3. Subspecialty
4. Board Certification
5. Academic positions (if any)

The doctor's part in the process is substantial. For those comfortable using the Internet, the information for your SSD application can be submitted via an online form at http://www.ssa.gov/. The site also has answers to many frequently asked questions.

A transcript is then sent to the doctor for his or her signature to verify that the information is correct. You may find it helpful to review a sample doctor's report to get an idea of what the Social Security Administration is looking for. It is important to communicate with your doctor about your disability application because his or her support can make all the difference. A detailed and factual letter written by the doctor to supplement the required information often works in the patient's favor.

What they need from you:

1. Social security number
2. Birth Certificate
3. Proof of Age
4. Names and Address of any institution where you have received treatments, including hospitals and clinics
5. Medications and Dosages
6. Medical Records
7. Lab Tests and Results
8. Employment history including the company's name and address, supervisor's phone number, the nature of your work, and W-2 forms
9. Dates of Prior Marriages
10. Bank Accounts and Automatic Deposit Records

For SSI, you must include all of the above, plus:

1. Value of home
2. Mortgage or lease information
3. Landlord's name
4. Payroll slips
5. Insurance policies
6. Car registration
7. Burial funds
8. Loans, stocks, bonds, and investments
9. Proof of citizenship or Non-citizen status.

Who Decides if a Disability Claim is Approved, and Why Might I Be Denied?

A team of reviewers make up the Disability Determination Services (DDS). This group includes Medical Doctors, Psychologists, and other consultant examination groups.  First-round applicants for Lupus are denied at a rate of 70%. That statistic remains the same for the second round as well. The DDS looks at more than just your medical information -- age and education weigh in heavily as well. For example, someone who is young and has a college education may be presumed to be able to find work, even with medical limitations.    

There is a listing of the factors used to determine disability under the Social Security Administration. This listing is sometimes referred to as the "Blue Book." Lupus has its own listing, which is 14.02 under "Immune System Disorders".

The DDS may seek information beyond what is on the application from your doctor. This is often a good sign, because it means there is enough information in your application to make them consider your case worthy of further inspection.

If you are denied, you may appeal the ruling. Hold on to your denial letter! This spells out the reason(s) your case was denied and can help you build an appeal. If you have been denied, you should respond within 60 days. The sooner, the better! After the second denial, the case goes before an Administrative Law Judge.

At this stage, it is important to have legal representation. Having an attorney may increase your chances of a favorable ruling. Attorneys are typically paid at a rate of 25% of the back pay you will receive if you win your case. It is also important to make sure you hire a lawyer who is familiar with social security law.

The importance of having an advocate - including doctors and social workers familiar with the process - cannot be overstated. In the beginning, make an appointment with your local social security office. Most workers there are very helpful during the initial stages of application. They will go over the application with you and help you understand the process.   

A Note Regarding the Americans with Disabilities Act vs. Social Security Disability

If you are struggling to maintain work because your employer is not adhering to the Americans with Disabilities Act, these are not grounds for receiving payments from social security. You have rights in the workplace that may help you maintain employment with the proper accommodations. (See our HSS Website article on this topic, Your Legal Rights if Disabled by Arthritis, by Kim Lem. Link to article located in the Related Articles section in the right-hand column), and refer to http://www.ada.gov/ for more information.

After SSD: CDR Reviews and Going Back to Work

Once you have been approved for disability, you can be subject to Continuing Disability Reviews (CDR). The frequency of these reviews may depend on how effective they expect continued treatments to be. Remember that their desire is to have you work if you are able. If a CDR finds that you are no longer disabled, you have 10 days to submit an appeal. Unlike your original application, you have a chance to meet with the panel reviewing your case during this appeal.  

You may decide that you want to go back to work. You are allowed a nine-month Trial Work Period (TWP). The nine months do not have to be consecutive.  During this time, your benefits will not be taken away. If the trial is successful, you may work for a 36 month period and maintain your eligibility. You will no longer receive benefits during this time, but if you find that your flares are reoccurring and you cannot maintain your work, your benefits will be reinstated without the need to reapply. Regulations may always change, so be sure that you have current information concerning this topic.

SSA offers an Employment Support Representative (ESR) to those wishing to return to work. Many people do want to work if at all possible. This program offers training and job placement support to make the transition back into the work force easier and more successful.

Additional Information

Applying for disability is never easy. The complicated nature of Lupus can make it even more difficult. The Social Security Administration's web page, http://www.ssa.gov/, offers excellent up-to-date information on all of its programs. You can also call the Social Security Administration toll free at 800.772.1213. Ask your doctor if he or she is familiar with the process and if they have any recommendations for finding assistance. The Social Work Department at your hospital may be able to help as well.

The Social Security Administration's "Blue Book"

Americans with Disabilities Act:  http://www.ada.gov/

Disability Workbook for Social Security Applicants (sixth edition, rev. March 2005), by Douglas M. Smith, Esq.

Learn more about the SLE Workshop, a free support and education group held monthly as HSS.