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Rett Syndrome (RTT) and Social Security Disability

When applying for Social Security Disability, many applicants must wait a year or more before being approved for disability benefits from the Social Security Administration (SSA). While it only takes an average of three to four months to complete the initial stage of the disability claim process, the majority of Social Security Disability claims are denied at this level. Applicants who are denied must then undergo the extensive disability appeal process in order to obtain the benefits to which they may be entitled.

In many cases, parents who file Social Security Disability claims for children with severe or terminal disabilities feel as though the complex and lengthy disability application and appeal process does not account for the urgency of their particular situations.

Fortunately, the Social Security Administration has recognized the fact that some applicants warrant special consideration when it comes to the processing of a disability claim. As a result, the SSA implemented the Compassionate Allowances program in 2008.

Under the Compassionate Allowances guidelines, certain Social Security Disability applicants are able to qualify for disability benefits in just a few weeks. There are 88 conditions that qualify an applicant for processing under these guidelines, and Rett Syndrome is among them.

If your child has been diagnosed with Rett Syndrome and you are wondering how the condition will affect your child's 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 disability claim is processed according to the SSA's Compassionate Allowances guidelines.

Rett Syndrome (RTT) - Condition and Symptoms

Rett Syndrome, also referred to as RTT, is a neurodevelopmental condition that affects the gray matter of the brain. Unlike most neurodevelopmental conditions, Rett Syndrome generally affects only female children. The condition is usually caused by a mutation of the MECP2 gene, which is located on the X chromosome of a child's DNA. In some cases the disorder may occur due to a mutation of the CDKL5 or FOXG1 genes.

The symptoms of Rett Syndrome can vary from patient to patient depending on the severity of the condition. Common symptoms include small hands, feet, and head, as well as repetitive movements, gastrointestinal disorder, seizures, impaired growth, emotional disorders, impaired verbal skills, and scoliosis. A child born with Rett Syndrome may appear normal at birth, but symptoms usually appear between six and eighteen months of age.

Unfortunately, there is no cure for the disease. Treatment is focused on addressing the symptoms of the condition and making the patient as comfortable as possible. While some of the babies born with Rett Syndrome will live into adulthood, many will not survive beyond infancy. The age of the disease onset and the speed of the progression of the disorder play a large part in the prognosis of a child who is born with the condition.

Filing for Social Security Disability with Rett (RTT) Syndrome

If your child has been diagnosed with Rett Syndrome, the experience can be traumatic, and parents are often forced to leave full-time work activity to meet the needs of a disabled child. If you are worried about the financial hardship this may cause your family, you may take some comfort in the fact that Social Security Disability benefits can help.

When you file your child's disability application, you may assume that your child's claim will be automatically approved by the Social Security Administration. Unfortunately, this will not be the case. You will still have to prove your child's disability to the Social Security Administration in order to receive the benefits you need.

When filling out the disability application forms, make sure that all questions are answered as thoroughly as possible and provide supporting medical documentation along with your child's disability claim. Medical records, lab results, and written statements from your child's treating physicians will help in the processing of your child's Social Security Disability application.

Your Rett Syndrome (RTT) Social Security Disability Case

Even though your child's disability claim is based on a Compassionate Allowances listing, that doesn't mean it will be automatically approved by the Social Security Administration. While it is not common, some Compassionate Allowances claims are denied by the adjudicators who review Social Security Disability files. When this happens, it is usually due to a lack of medical evidence, an improperly completed disability application, or a lack of understanding of the Compassionate Allowances program on the part of the adjudicator reviewing the claim.

To prevent these things from interfering with your child's disability approval, you may want to retain the services of a qualified disability attorney or advocate. When you work with a disability attorney or advocate, the professional you hire will work with you to properly prepare and submit your child's disability claim. He or she will also ensure that the adjudicator reviewing the file understands how your child qualifies for faster approval under the Compassionate Allowances guidelines.

Fortunately, hiring a disability advocate or attorney does not have to cause additional financial hardship. These professionals work on a contingency basis, collecting 25 percent of the back pay that you are awarded by the Social Security Administration (up to a maximum amount of $6,000). If you do not win your disability case, you will not have to pay for the services provided.