You are here

Perry Syndrome and Social Security Disability

Any application for Social Security Disability (SSD) benefits can take at least three months to be reviewed by the Social Security Administration’s (SSA) Disability Determination Services (DDS) office. The DDS additionally denies benefits for the majority of applicants during the initial review – about 70 percent according to national averages. Those denied benefits must usually undergo a second review and eventually an appeal hearing. This entire process can take a year or longer in most locations, with some applicants waiting as long as two years.

Because people who have very severe disabilities and terminal illnesses don’t have months or years to wait for a decision on their eligibility for SSD benefits, the SSA developed the Compassionate Allowances (CAL) program in 2008, which is a process by which the DDS can expedite the review and approval of claims that are based on specific kinds of disabilities.

Currently, there are 113 disabling conditions which are among the SSA’s CAL list, though an additional 52 were recently approved for inclusion in the program. Perry Syndrome is among them, and is scheduled to become active in the CAL program as of August 13, 2012.

If you’ve received a diagnosis of Perry Syndrome, the information that follows may help you understand how the SSA reviews disability claims for the specific condition. The following information will also provide you some guidelines for seeing a quick and smooth approval of disability benefits under the CAL guidelines of the SSA.

Perry Syndrome – Condition and Symptoms

Perry Syndrome is an exceptionally rare, genetic brain disease, affecting only about fifty individuals worldwide. The disease is progressive in nature and patients usually present symptoms when in their forties or fifties. Symptoms include the development of Parkinson-like muscle movements (Parkinsonism), psychiatric changes, abnormally slow breathing and weight loss.

The earliest signs are usually psychiatric changes and Parkinsonism. Depression, apathy, emotional withdraw from loved ones, and suicidal thoughts are all common. Rapid, unexplained, and significant weight loss can occur early in the disease or may happen later.

Abnormally slow breathing, or hypoventilation, usually happens later in the disease’s progression and often affects patients at night, causing them to wake frequently due to insufficient oxygen. As the disease worsens over time, hypoventilation can cause life threatening results, including a complete and extended lack of oxygen and respiratory failure.

The genetic mutation which causes Perry Syndrome prevents specific brain cells from communicating and from developing. Cells which are cut off eventually die and as the disease progresses, motor control, emotional and psychological function and breathing become more compromised.

Perry Syndrome is a terminal illness, and most diagnosed with it don’t survive more than five years after the onset of symptoms. Daily supportive care is required in the later stages of the disease. Patients need constant monitoring and may require feeding and breathing assistance. There is no way to slow the progression of the illness and treatment instead focuses on supportive care and keeping sufferers as comfortable as possible.

Filing for Social Security Disability with Perry Syndrome

Because the condition is so rare and is new to the SSA’s CAL program, a diagnosis of Perry Syndrome alone does not guarantee you’ll be approved for benefits. Thorough medical records must be presented in any SSD benefits application, even when the claim is filed for a condition which falls under the CAL program.

Your application should include all medical records, including lab and genetic test results as well as statements from the different physicians who’ve treated the condition. The more medical detail you can include in your initial application the more quickly the SSA will typically approve benefits and the less likely you are to need to go through additional reviews or appeals.

Your Perry Syndrome Social Security Disability Case

Though recently approved for inclusion in the Compassionate Allowances program, Perry Syndrome disability claims are not guaranteed for automatic approval for disability benefits. You must still submit a well documented and thorough application. A Social Security Disability attorney can assist you in putting together your claim.

To learn more about the Social Security Compassionate Allowance listings or to discover more about Social Security Disability benefits with a diagnosis of Perry Syndrome, request a free case evaluation today.