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Infantile Pompe Disease and Social Security Disability

When applying for Social Security Disability, the majority of applicants must wait more than a year before obtaining the disability benefits to which they are rightfully entitled. While the initial application process for disability benefits only takes three to four months to complete, most applicants are denied during this initial stage. These applicants must then endure the lengthy disability appeal process in order to obtain their Social Security Disability benefits, which is a process that can take more than two years to successfully complete.

Some of the parents who are filing Social Security Disability claims for their severely disabled children feel that the extensive wait times required for disability approval are unreasonable. Fortunately, the Social Security Administration has taken steps to alleviate this issue, and in 2008 implemented the Compassionate Allowances guidelines. Under these guidelines, Social Security Disability applicants who suffer from one of 88 disabling conditions can qualify for disability benefits in just a few weeks. Children who have been diagnosed with Pompe Disease are among the applicants who are entitled to expedited processing of their disability claims.

If your child has been diagnosed with Pompe Disease and you are wondering how the condition affects you’re his or her eligibility for Social Security Disability benefits, the following information will help you understand the disability claim process and how you can ensure that your child's claim for benefits is processed according to the SSA's Compassionate Allowances guidelines.

Infantile Pompe Disease - Condition and Symptoms

Pompe Disease is a rare genetic condition that affects approximately one in every 40,000 live births. The disease is caused by a genetic mutation that results in a deficiency of the alpha-glucosidase enzyme, also known as GAA. The body uses this enzyme to break down stored sugar that the body uses for energy. Because babies who are born with Pompe Disease lack this enzyme, the body accumulates excessive amounts of this sugar, resulting in damage to the heart and skeletal muscles.

The infantile form of Pompe Disease manifests within the first few months of life. While symptoms of the disease vary depending on the severity of the condition, common symptoms associated with infantile Pompe Disease include feeding problems, impaired weight gain, poor muscle tone, respiratory complications, lung infections, heart enlargement, and an enlarged tongue.

If a doctor suspects that a child has been born with infantile Pompe Disease, he or she can order genetic testing to check for common genetic mutations and can also take blood tests to check for GAA enzyme activity. Unfortunately, there is no cure for patients who are diagnosed with Pompe Disease. Instead, treatment will be focused on minimizing the symptoms of the condition and making a patient as comfortable as possible. Enzyme replacement therapy and other newer treatment options may be able to lengthen a child's expected lifespan, most of the babies who are born with the condition will die within the first year of life, usually due to respiratory complications or cardiac failure.

Filing for Social Security Disability with Pompe Disease - Infantile

If your child has received a diagnosis of infantile Pompe Disease, the experience can be traumatic. In many cases, at least one parent will be forced to stop working in order to care for the child full-time. This can cause significant financial hardship for families with disabled children. Fortunately, disability benefits through Social Security may be able to help offset some of the financial burden.

When filing a disability application based on a diagnosis of infantile Pompe Disease, make sure that you properly complete all of the forms required by the Social Security Administration. You should also be very careful when answering the questions asked on the claim forms, being sure to address all questions with carefully thought-out and detailed answers.

Although Pompe Disease is one of the 88 conditions included in the SSA's Compassionate Allowances listings, you will still need to provide the Social Security Administration with as much medical evidence as possible to support your child's disability claim. Medical records, lab results, and treatment histories can all help support your claim for Social Security Disability benefits.

Your Infantile Pompe Disease Social Security Disability Case

Many of the parents who file disability claims based on Compassionate Allowances listings assume that their child's disability benefits will be automatically approved by the Social Security Administration. Unfortunately, the SSA has been known to deny disability claims that are based on Compassionate Allowances listings. When this happens, it is usually due to an improperly submitted disability claim, a lack of medical evidence, or a lack of Compassionate Allowances knowledge on the part of the adjudicator reviewing the file.

While it is not common for Compassionate Allowances disability claims to be denied by the Social Security Administration and these claims do receive priority attention during the appeal process, you should still do everything in your power to obtain an approval of your child's initial disability claim. Retaining the services of a qualified Social Security Disability advocate or attorney may be the best way to do this.

When you hire a disability attorney or advocate, the professional you choose will work with you to ensure that your child's Social Security Disability claim is filed properly and that sufficient medical evidence is provided to the Social Security Administration. Your advocate or attorney can also ensure that your child's claim is presented in such a way that the adjudicator reviewing the file understands how the condition qualifies for processing under the Compassionate Allowances guidelines.