When a child is diagnosed with a severely debilitating condition, the financial ramifications faced by the family can quickly become overwhelming. In many cases, at least one parent is unable to work due to the needs of the disabled child. In rare cases where both parents are able to continue employment, the cost of qualified care for the child can take a serious financial toll. Fortunately, some of the children who are faced with disabling conditions may qualify for Social Security Disability benefits.
In many cases, Social Security Disability applicants must wait months or even years before their disability payments can begin due to the lengthy and complicated claim and appeal process. The good news is that not all applicants have to undergo the standard disability claim procedures required for most Social Security Disability claims. Applicants who are suffering from severe disabilities may be qualified for faster Social Security Disability approval under the SSA Compassionate Allowances initiative.
The Compassionate Allowances program was introduced by the Social Security Administration in 2008. There are 88 conditions that currently qualify for processing under these guidelines. MPS III, also known as Sanfilippo Syndrome, is one of the conditions that qualify an applicant for faster approval under the Compassionate Allowances listings.
If your child has been diagnosed with MPS III, the following information will help you navigate the Social Security Disability claim process and will shed light on how you can increase your chances of obtaining a quick approval of your child's disability benefits under the Compassionate Allowances guidelines. MPS I (Hurler Syndrome) and MPS II (Hunter Syndrome) are also listed as conditions that qualify for the compassionate allowance program.
Back to topMPS III (Sanfilippo Syndrome) - Condition and Symptoms
There are some genetic disorders that result in a child being deficient in, or simply not having, any of the enzymes that are necessary to break down certain molecules and proteins in the body. These disorders are known as mucopolysaccharidoses, also referred to as MPS. The condition known as MPS III, also referred to as Sanfilippo Syndrome, can be broken down into four different subcategories including Type A, Type B, Type C and Type D. The severity of the condition and the symptoms experienced will depend on which type of MPS III with which a patient is diagnosed.
In Sanfilippo Type A, the person is missing the heparan N-sulfatase enzyme or has an altered form of it. In Sanfilippo Type B, the person does not produce enough of the alpha-N-acetyglucosaminidase enzyme. With Sanfilippo Type C, the individual is unable to produce enough acetyl-CoAlpha-glucosaminide acetyltransferase. With Sanfilippo Type D, the patient is lacking the N-acetylglucosamine 6-sulfatase enzyme.
Unlike most of the other forms of MPS, the symptoms of MPS III do not appear in the first year of a child's life. Instead, the disease usually presents itself between two and six years of age. During the initial stages of childhood, the patient may experience normal growth rates, but the growth will become stunted in later years. The child will also experience deteriorating mental abilities.
While the symptoms of Sanfilippo Syndrome vary from case to case, common symptoms include behavioral problems, coarse facial features, diarrhea, full lips, a heavy uni-brow, sleeping difficulties, stiff joints, and impaired motor skills. If a doctor suspects that a patient has the condition, he or she can preform a variety of tests including blood cultures, echocardiogram, skin fibroblast cultures, and x-rays of the bones.
Unfortunately there is no cure for MPS III, nor is there any standard treatment for the condition. In most cases, treatment will be focused on addressing the symptoms caused by the condition. While the prognosis of Sanfilippo Syndrome cases can vary depending on the severity of the condition, the disorder can directly affect an individual's life span. Although some may live longer, most children born with the condition will survive only into their teenage years.
Back to topFiling for Social Security Disability with MPS III (Sanfilippo Syndrome)
If your child has been diagnosed with MPS III, you should apply for Social Security Disability benefits as soon as possible. The sooner you submit your child's disability claim, the sooner you will be able to receive financial assistance from the Social Security Administration.
When you are completing your child's Social Security Disability application, make sure that you fill it out completely. If you do not fill out the entire application, it may result in a delay or denial of your child's disability benefits. Also make sure that you answer all questions as descriptively as you can. Simple, one-word answers will not help your child's disability claim. Make sure that you answer the questions in such a way that it helps the adjudicator reviewing your file understand the severity of your child's condition.
You will also need to include a complete copy of your child's medical records when submitting a Social Security Disability application on his or her behalf. While the SSA can technically obtain these records on their own, you should include a copy with your claim to ensure that all medical evidence used in the processing of your child's claim is accurate and up to date.
Back to topYour MPS III (Sanfilippo Syndrome) Social Security Disability Case
Many parents assume that their child's disability claim will be automatically approved by the Social Security Administration if the claim is based on a Compassionate Allowances listing. Unfortunately, the fact of the matter is that some Social Security Disability claims that are based on a Compassionate Allowances listing are still denied by the Social Security Administration. Usually this is due to an improperly filed disability claim or a lack of medical evidence. In some cases it is due to a lack of knowledge on the part of the adjudicator reviewing the case.
If you want to increase your chances of obtaining a quick approval of your child's Social Security Disability claim, you should consider retaining the services of a qualified disability advocate or >Social Security attorney. This professional can help you complete your disability application and can work with you to present your claim in a way that will help the adjudicator reviewing your file understand how the condition qualifies for processing under the SSA's Compassionate Allowances guidelines.
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