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Pelizaeus-Merzbacher Disease – Connatal Form 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 as well. This entire process can take a year to two years in most locations.

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 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 Connatal 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 – Connatal 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 – Connatal Form – Condition and Symptoms

The Connatal Form of Pelizaeus-Merzbacher Disease (PMD) is the most severe form of the disease. It typically develops early in infancy, just a few weeks following birth, and progresses rapidly, usually resulting in death due to respiratory complications before reaching adolescence. PMD occurs in only about one out of every 400,000 people, and Connatal PMD accounts for about 30 percent of diagnoses. Connatal PMD occurs due to genetic defect that cause issues with the central nervous system.

The Connatal Form of PMD presents in the first few weeks to several months following birth. The initial symptoms are usually nystagmus (jerking, involuntary eye movements), respiratory difficulties, low muscle tone, muscle spasms and seizures.

Later symptoms of the illness include difficulty controlling muscle movements and severe developmental and intellectual disabilities. Children with this form of PDM are rarely able to walk and often have very limited speech abilities.

Subtle signs of neurological abnormalities in the white matter of the brain during MRIs performed before the age of one year are present. Later MRIs show much clearer abnormalities, though the symptoms observable from as early as one week following birth usually lead to a definitive diagnosis.

There is no cure for Connatal PMD, nor is there a single, standard treatment regimen. The symptoms present instead determine the type of treatment required. Medications, like anti-spasticity and seizure drugs are necessary. Physical therapy and other supportive treatments and therapies are crucial. Most focus on keeping the child comfortable and minimizing risks like falls, infections and other incidental and environmental concerns.

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

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

Your application should include all of the various test results, including MRIs and neurological assessments. In addition to these findings, your application for SSD benefits should include statements from all of your physicians, including the doctor who originally suspected a bigger problem as well as those who tested for, diagnosed and treated the condition. If other physicians were consulted on the case, consultation notes or statements from those physicians should also be included in your application.

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 – Connatal Form Social Security Disability Case

While Connatal 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.

When your child is diagnosed with a serious medical condition, the last thing on your mind is the attention to detail necessary for putting together a child disability application. This is exactly where a Social Security lawyer can be of assistance.

A Social Security Disability attorney can help you put together your application and can assist in getting the appropriate documentation collected for satisfying the SSA’s eligibility requirements. He or she can help you through the entire application process and shorten the wait for disability benefits as well.