Benefits For Pelizaeus-Merzbacher Disease

Most people who apply for Social Security Disability Insurance (SSD) benefits will spend at least four months waiting for their application to be reviewed by the Disability Determination Services (DDS) office. The DDS is the agency which examines disability claims under the Social Security Administration’s (SSA) guidelines for a qualifying disability.

For a number of reasons, the DDS finds the majority of applications ineligible for SSD, with the national average denial rate being about 70 percent. This means most applicants must undergo a second review and may eventually need to attend an appeal hearing, if their claim is denied the second time around. This entire process can take a year or more to complete, and some applicants wait as long as two years for a final decision from the SSA.

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 launched the Compassionate Allowances (CAL) program in 2008. Under the guidelines of CAL, the DDS can expedite the review and approval of claims which are based on specific kinds of disabilities.

Currently, there are 113 disabling conditions which are among the SSA’s CAL list. An additional 52 were recently approved for the list, including the Classic Form of Pelizaeus-Merzbacher Disease, which will become an active condition in the CAL program as of August 13, 2012.

If you’ve received a diagnosis of Pelizaeus-Merzbacher Disease – Classic Form, 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.

Pelizaeus-Merzbacher Disease – Classic Form – Condition and Symptoms

The Classic Form of Pelizaeus-Merzbacher Disease (PMD) is the least severe form but does develop in infancy. PMD occurs in only about one out of every 400,000 people, and Classic PMD is the most common form of the disease, accounting for about 70 percent of diagnoses. Classic PMD occurs due to genetic defect that cause issues with the central nervous system.

The Classic Form of PMD presents in the first few months following birth. The initial symptoms are usually nystagmus (jerking, involuntary eye movements) and low muscle tone which typically progresses quickly into frequent muscle spasms.

Later signs of the illness include difficulty controlling muscle movements, impaired speech, developmental disability, and intellectual deficits. Though children with this condition may learn to walk with assistance and support devises and to speak clearly, movement is still difficult and speech is usually very slow.

An MRI performed around the age of one year will show clear abnormalities in the white matter of the brain. MRIs performed early in infancy show more subtle deficits which may be missed by physicians with less experience dealing with rare infantile neurological diseases. The signs of Classic PMD are usually present in the first few months following birth, but the condition is commonly misdiagnosed as cerebral palsy.

There is no cure for Classic PMD, nor is there a single, standard treatment regimen. Individual symptoms and symptom severity instead dictate treatment required, which may include anti-spasticity and anti-seizure medications, physical therapy, and the use of orthopedic support devises. Speech therapy may also be needed. While daily support is often necessary, infants with the Classic Form of Pelizaeus-Merzbacher Disease can live well into their 60s or 70s.

Filing for Social Security Disability with Pelizaeus-Merzbacher Disease – Classic Form

When applying for disability benefits with any diagnosis, you must include substantial medical documentation in your claim. In the case of Classic Form PMD applications, this includes documentation of diagnosis, treatment and current condition.

The various test results, including MRIs and neurological assessments should also be in your application. In addition to all of these findings, your application for SSD benefits should include statements from all of your doctors, including the physician who originally suspected a bigger problem as well as those who diagnosed and have treated the condition.

The more detailed the documentation you’re able to have in your initial application for disability benefits, the less likely you’ll experience delays in getting the SSD payments to which you may be entitled.

Your Pelizaeus-Merzbacher Disease – Classic Form Social Security Disability Case

While Classic Pelizaeus-Merzbacher Disease is approved by the SSA for expedited claims processing under the CAL program, the diagnosis alone is not enough to prove eligibility for benefits. You must still substantiate the diagnosis and overall condition. A Social Security Disability attorney can assist you in putting together your application and getting the appropriate documentation for proving disability.

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