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Compassionate Allowance - Rett (RTT) Syndrome

Discovering your child has been born with a rare disorder is especially disconcerting. Extra attention and medical care is often needed, and sometimes parents may have to work fewer hours in order to provide that care. This may cause financial problems for the whole family. Many people are interested in finding out if they can receive disability benefits, but are concerned about how long the process takes and how difficult it sometimes is.

However, the Social Security Administration (SSA) has realized that there are special cases that require a quicker disability application process. Because of this need, the SSA has created the Compassionate Allowance program. The Compassionate Allowances are a list of rare and serious disorders that automatically qualify you or your child for disability benefits. If you have a disease that is considered a Compassionate Allowance, you will also be able to go through a quicker process when applying for disability benefits. Most claimants are approved within a few weeks of applying for disability benefits.

Rett (RTT) Syndrome – Condition and Symptoms

Rett (RTT) Syndrome is a progressive neurologic disorder that affects only girls. Children with this disorder appear normal at birth and show normal mental and motor development until around 6 to 18 months. After this time, their development seems to remain stagnant and then quickly starts to deteriorate. The common trademark of this disease is the loss of purposeful hand use, which is then replaced by repeated stereotyped movements. By 18-24 months, screaming fits and crying that doesn’t respond to normal remedies such as rocking, feeding or changing is common.

Other features of Rett (RTT) Syndrome are panic attacks, autistic-like features, teeth grinding, temporary pauses in breathing, tremors, an abnormally small head and seizures. Seizures occur in about 90% of females affected with this disorder. After the window of quick deterioration the condition remains rather stable. However, many girls will eventually develop hand or foot deformities and abnormal muscle tone as they grow older.

There is no cure for Rett (RTT) Syndrome as of this time. Treatments deal with lessening and managing symptoms, and providing social and psychological support for the family. A large number of females with RTT do survive into adulthood, but are extremely dependent. There is a higher occurrence of sudden and unexplained death in girls with Rett (RTT) Syndrome.

Filing for Social Security Disability with Rett (RTT) Syndrome

If your daughter has been diagnosed with Rett (RTT) Syndrome, she will qualify for Social Security disability benefits under the Compassionate Allowances act. This means that you will be able to go through an expedited process when filing for benefits. Usually, the process takes between 3 to 18 months. With a Compassionate Allowances claim that time is shortened to only a few weeks. Also, under normal circumstances, you may have to wait even longer after being approved before actually collecting any disability benefits. In the expedited process you and your daughter can start to receive benefits almost immediately, generally as soon as the next benefit cycle begins.

While you can be sure that your daughter will be able to receive the help she needs, it is always good practice to seek the services of a Social Security disability lawyer. A disability lawyer will have dealt with similar cases and can help you to navigate through the extensive paperwork. Many times, a case is delayed or denied simply due to out of order paperwork or incorrect documentation.

Every Compassionate Allowances disorder has specific medical documentation that is needed to show proof of the disease. For Rett (RTT) Syndrome, molecular genetic testing showing a sequence analysis of the MECP2 gene on the X-chromosome will identify four-fifths of those afflicted. In addition, clinical findings showing a loss of developmental skills and repetitive motor movements are also indicative of the disease.

Your Rett (RTT) Syndrome Social Security Disability Case

Filing for Social Security disability, even with a Compassionate Allowance, can bring a lot of extra unneeded stress to you and your family. Because of this it’s a great idea to contact a Social Security disability lawyer. They will be able to take a lot of the work off your hands, giving you more time with your daughter and other family. A disability lawyer can also help ensure your case does not get delayed because of disorganized paperwork or missing documents.