Compassionate Allowance - Niemann-Pick Disease (Type C)

If you or your child suffers from a disabling condition, you may be entitled to Social Security Disability benefits. Unfortunately, for most claimants this means going through a disability claims and appeals process which takes at least three months. It’s not uncommon for a Social Security disability claim to spend a year and a half in appeals, and some claims take several years to settle.

For those who have the most serious and obviously disabling conditions, however, the Social Security Administration (SSA) has a program called Compassionate Allowances which can help you start collecting Social Security disability benefits much faster than if you had to go through the typical process.

Compassionate Allowance Listings are reserved for those conditions which always meet the SSA’s qualifications for disability. Because these conditions always meet the requirements for benefits, the diagnosis in and of itself is sufficient proof of disability, as long as the appropriate testing has taken place and is documented.

Instead of having to wait several months before receiving and answer or benefits, Compassionate Allowance claimants are approved in about three weeks, and start to receive Social Security disability benefits on the next cycle (usually a week or two later). This works out in the best interest of the claimant (who receives needed benefits much sooner) and the SSA (which doesn’t have to waste valuable man hours putting claimants who obviously qualify through a needless procedure).

Niemann-Pick Disease-Type C – Condition and Symptoms

There are five types of Niemann-Pick Disease. Each is a genetic disorder which leads to progressive loss of functioning of the nervous system. The disease is genetic, and caused by mutations in the NPC1 and NPC 2 genes.

The disease can begin to show anytime from infancy through the early adult years. When it occurs in infancy, typical symptoms include jaundice, muscle contractions, involuntary muscular movement, slow weight gain, feeding issues, and other developmental issues. The spleen and liver are typically enlarged, though not as severely as with other forms of Niemann-Pick Disease. Brain damage is usually extensive and is characterized in Type C NPD by the lack of ability to look down or up, problems walking, difficulty swallowing, and loss of sight and hearing. Other common symptoms include seizures, slurred speech, tremors, and dementia.

The life expectancy of those who suffer from Type C NPD varies considerably. Those who begin to show symptoms in the first year of life seldom live to school age. On the other hand, many who develop the condition later in childhood live into their teenage years and some live into their twenties.

There is no cure for Type C Niemann-Pick Disease at this time. At present, treatments being employed are generally used to address the major symptoms such as seizures.

Filing for Social Security Disability with Niemann-Pick Disease, Type C

In most cases of Type C Niemann-Pick disease, a parent or guardian will be filing for Social Security disability benefits on behalf of their child. Because the disease does sometimes strike young adults, however, it is feasible that you could be filing for your own benefits due to Niemann-Pick disease.

If that is the case, you should appoint a representative. Because of the neurological damage which the disease causes, you will eventually need someone to represent you, and it’s best to appoint someone earlier rather than later. It’s also a good idea to consult a Social Security disability lawyer, who can help ensure that your claim is filed properly and with all of the needed medical documentation.

If you are filing on behalf of your child, you may also want to consider consulting a lawyer who is thoroughly familiar with the SSA disability system. Not only is it inexpensive when dealing with compassionate allowance cases, but it saves you a lot of the headache of dealing with the disability benefits system and frees you to spend your time with your child.

Regardless of who files the claim with the SSA, you will need to have everything filled out completely and honestly. You will also need to have supporting medical documentation. This should consist of the lab results which show the characteristic cholesterol storage associated with the disease. It should also include the genetic testing which shows the NPC 1 or 2 mutations. If these are not available, the SSA will generally accept the general laboratory results as long as they are comprehensive and include mental, physical, and neurological findings which led to the diagnosis.

Your Niemann-Pick Disease-Type C Social Security Disability Case

If you or your child has been diagnosed with Type C Niemann-Pick Disease, you will qualify for Social Security disability benefits. Your case, if filed correctly, will be flagged for a compassionate allowance and rubber stamped, allowing you to start receiving benefits in a matter of a few short weeks.

Even though you undoubtedly qualify for benefits, you might consider having a Social Security disability lawyer look over your files, just to make sure everything is in order.