Social Security disability benefits exist to help those who are dealing with a debilitating condition to maintain some degree of financial independence when they cannot continue to work. Many don’t realize that these benefits are also available to children with debilitating conditions, and that the benefits may be used to help offset the additional costs of having a child with special needs.
Children who are deemed to be disabled by the Social Security Administration (SSA)’s standards may be eligible for Supplemental Security Income (SSI), Medicaid and Medicare. The exact types and amount of benefits the child qualifies for are dependant on a number of factors. If you think your child may qualify for Social Security disability benefits, you should apply sooner rather than later, as the amount of back pay you are eligible for can be affected by the date which you file.
Most Social Security disability claimants need to be prepared to spend several months (and sometimes several years) waiting for their claims to be approved. This is because the SSA typically has more claims than it can deal with in a timely manner and because most claims require a significant amount of verification and additional medical information.
Fortunately, the SSA has recognized that some conditions are serious enough that their diagnosis alone is enough to qualify for Social Security disability benefits. Currently, the SSA recognizes 88 such conditions, called Compassionate Allowances. If you or your child has one of the listed conditions, you will be able to avoid most of the headache involved in the Social Security disability claims process.
Generally speaking, those who qualify for a compassionate allowance will automatically be flagged by the SSA based on certain key words or phrases in their medical files. You won’t need to do anything special in order to receive a compassionate allowance. Compassionate allowance claims are approved within a month of the initial application, compared to six to eighteen months which is common for most Social Security disability claims.
The conditions which qualify for Compassionate Allowances consist of terminal cancers, rare diseases, neurological disorders and a number of genetic, infantile disorders. One such disease which qualifies for a compassionate allowance is Infantile Pompe Disease.
Pompe Disease – Condition and Symptoms
Infantile Pompe is a form of Pompe disease which strikes during the first few months of life. Its early symptoms include head lag, poor weight gain, weakness, floppiness, lack of weight gain (failure to thrive) and feeding problems. The cause of this can be any one of over 70 genetic mutations to the GAA gene. The infantile form of the disease is the most severe.
All forms of Pompe disease eliminate or reduce GAA, which the body uses to break down glycogen, a form of sugar which is used for energy. Because the glycogen is not broken down, it accumulates in excessive amounts all over the body, and especially around the skeletal muscles and heart. This causes the heart to become grossly enlarged. It often also causes respiratory problems. In many cases, it also causes the infant’s tongue to become enlarged, which leads to feeding difficulties.
The tests administered to detect this disease are 100% accurate. If your child has been diagnosed with Pompe disease, there is no doubt whatsoever that is what he or she actually has.
There is currently no known cure for Pompe disease, and the prognosis is generally poor. Most children with this condition die during their first year of life. However, there are some potential bright spots on the horizon for those who have this disease. High protein diets have been shown to help respiratory function, enzyme replacement therapy has been shown to decrease baby’s heart size and improve heart functioning and other symptoms, and the FDA has recently approved a new medication (Myozyme) for treatment of Pompe disease.
Filing for Social Security Disability with Pompe Disease
If your baby has been diagnosed with Infantile Pompe Disease, you qualify for a Compassionate Allowance. Because of this, you automatically qualify for Social Security disability benefits. There are other factors involved in determining how much and which types of benefits you qualify for, and you should strongly consider consulting a Social Security disability lawyer to ensure that you receive all of the benefits which your child qualifies for.
Your medical documentation should include the results of the genetic mutation screening which shows the GAA deficiency levels. This is typically done with a blood test. The test is 100% accurate, a fact which generally causes Pompe disease cases to sail through the Compassionate Allowance system very quickly.
Your Pompe Disease Social Security Disability Case
Even though there is no doubt that you qualify for Social Security disability benefits based on the diagnosis, you may find it comforting to have a professional Social Security disability lawyer handle your claim. Doing so will ensure that all paperwork is complete and handled correctly and that you will qualify for a compassionate allowance without further disruption to your lives. Additionally, having a Social Security disability attorney handle your claim saves you time, so you can focus on taking care of your child.