Getting Disability for Stiff Person Syndrome

Stiff person syndrome (SPS) is a debilitating neurological disorder that causes intermittent muscle stiffness in the limbs (arms and legs) and torso. The disorder affects both men and women, but is twice as prevalent among women.

While there is no cure for SPS, its symptoms can be moderated with a combination of medications. However, even with treatment sufferers are at risk for serious falls. Sufferers also have an increased sensitivity to sounds, touch, and stress, all of which can trigger muscle spasms. Many people with SPS become homebound because everyday sounds such as car horns and loud voices can trigger muscle spasms that place the individual in danger of injury.

Compassionate Allowance

Because of the serious nature of some conditions, the Social Security Administration (SSA) has established a list of illnesses that are eligible for an immediate approval of benefits. These are called Compassionate Allowances (CAL); SPS is one of the conditions eligible for a compassionate allowance.

SPS has alternate names under the SSA's compassionate allowances list, all of which are eligible for immediate benefits:

• Stiff Man Syndrome
• Stiffperson's Syndrome
• Moersch-Woltmann Syndrome
• Moersch-Woltman Condition
• SMS
• Stiff Baby Syndrome
• Focal Stiff Person Syndrome
• Stiff Limb Syndrome
• Jerking Stiff Person Syndrome
• Progressive Encephalomyelitis with Rigidity and Myoclonus, and
• PERM.

What Medical Evidence Do I Need?

When you apply for disability due to your SPS, you must supply the SSA with the following medical evidence:

• complete medical records from physicians that treat you for your SPS
• complete medical records from any facilities where you have received treatment for your SPS
• any records that document the progression of the disease
• copies of electromyography reports (EMG)
• anti-glutamic acid decarboxylase antibody testing results (this is the most important antibody test you need)
• antipancreatic islet cell and anti-amphiphysin antibody testing results, and
• lumbar puncture results.

The more medical evidence you provide with your initial application, the faster you will be approved. It is also helpful to see a neurologist. If you have neurological symptoms that are getting progressively worse, you have a better chance of getting disability benefits for stiff person disease.

Do I Need to File a Special Application?

You do not need to file a special application if you have a compassionate allowance condition. However, if you have a CAL, it's helpful to advise your field office in person when you first apply. Although the SSA should identify your SPS as a CAL, it doesn't always happen.

If you are applying for Social Security Disability insurance benefits (SSDI), you can apply online at the SSA's website, or at your local field office. However, if you are applying for Supplemental Security Income (SSI), you must apply in person at your local field office.

If you have other medical conditions, be sure to list them on your disability application, even if alone they aren't severe enough to qualify for disability benefits. For instance, stiff person syndrome is sometimes found in people who suffer from diabetes, breast cancer, epilepsy, thyroiditis, or pernicious anemia. A combination of severe and non-severe conditions can sometimes lead Social Security to grant disability benefits.

How Long Will It Take Me to Get Benefits?

Claims based on non-CAL conditions can take months or even years to decide. However, if you have a CAL such as SPS, the SSA will try to approve your claim as quickly as possible (sometimes in just weeks). However, there are factors that can slow down the approval time:

• whether the SSA has received enough medical records to support an approval
• whether the SSA decides to send you for a consultative examination (CE), and
• whether your claim is selected at random for a quality assurance review.

For more information, please read our articles on CEs and quality assurance reviews.

Do I Still Have to Prove That I am Disabled?

Even if you have been diagnosed with SPS, you must still meet the SSA's basic requirements for disability: your medical condition must prevent you from working at the substantial gainful activity level (approximately $1,500 per month), and your condition must have lasted, or be expected to last, at least 12 consecutive months.

Contact a Disability Attorney

If you have questions about whether your SPS qualifies you for automatic benefits under the compassionate allowance program, it may be helpful to speak to an experienced disability attorney.