When you receive a diagnosis like Type A Niemann-Pick Disease for your child, everything changes. Knowing that your child has a disabling and fatal disease makes it all the more important for parents to spend as much time with their child as possible. With the amount of special care needed by children with this and similar conditions, it is often unfeasible to return to working full time and being away from your child.
This, combined with the added expense which the child's special need brings, can cause a real strain on your financial budget. While it may not solve all of the problems, Social Security disability benefits such as Supplemental Security Income (SSI) can make all the difference in the quality of care you are able to give to your precious little one.
Before 2008, everyone had to go through the same basic claims (and often appeals) process, regardless of what kind of disability they (or their children) were dealing with. Even those who were clearly disabled had to wait three to six months before any decision could be rendered. And when the decision did arrive, 70% of the time it was a denial, which requires going through the disability appeals process. In some cases, the appeals process more than one year. If you're faced with raising a child with a terminal disease, the wait times presents a problem.
In 2008, the SSA started the Compassionate Allowances program, which seeks to identify those who have the most clearly disabling conditions and place them in a much faster, more streamlined application process. Those who have a condition which qualifies for a compassionate allowance automatically qualify for Social Security disability benefits, and are typically approved in three to four weeks, and begin receiving Social Security disability benefits right away.
There are several types of Niemann-Pick Disease, each of which is a form of inherited, genetic metabolic disorder affecting such organs as the lungs, liver, spleen, bone marrow, and brain. All forms of the disease produce problems with muscle coordination, brain damage and degeneration, learning difficulties, poor muscle tone, touch sensitivity, spastic behavior, feeding problems, speech impediments (most often slurring), and enlargement of the spleen and liver. Other telltale symptoms include clouded corneas, and a bright red "halo" forming around the retinal center.
Type A Niemann-Pick Disease strikes infants. Additional symptoms of Type A include jaundice and significant brain damage. This is caused by inactivity of enzymes which allows large amounts of a fatty substance called sphingomyelin to build up in all of the body's cells. When the disease is known to be carried in either parents' family history, neonatal tests can be conducted which show whether or not a baby will be struck with the disease.
There is no cure for Type A Niemann-Pick Disease (NPD) currently. At the present, treatments used are geared towards addressing symptoms such as seizures. Most children with NPD Type A die by the age of three.
If your child has been diagnosed with Type A Niemann-Pick Disease, there is help available. While it can never make up for the loss you will experience, Social Security disability benefits can help you give your child the best quality of life possible given the circumstances. With medical benefits through Medicaid or Medicare and financial benefits through SSI, your financial and medical burden can be lifted somewhat.
Because your child has a disease which qualifies for a Compassionate Allowance, you automatically qualify for disability benefits. Many still find it beneficial to have a Social Security disability lawyer handle their claim, but this is more to ensure that the paperwork is filed correctly (so approval will be timely) and that all documentation is complete when first submitted rather than for any fear that the claim might actually be denied.
Whether you file the claim yourself or have a representative help you, you will want to make sure that the medical file includes the results of blood and bone marrow tests which indicate the ASM activity level, as well as the findings related to enlargement of the spleen and liver. You will also want to make sure that all developmental delays are fully documented.
There's no doubt about that you qualify for Social Security Disability when your child is diagnosed with NPD Type A. As with other Compassionate Allowance listings, your child's diagnosis entitles you to avoid a lot of the normal headache of the SSA system.
With that said, though, it's always a good idea to have a Social Security Disability lawyer review your claim to make sure that you have the right documentation on file. Disability attorneys work on a contingency basis and are not paid unless your disability claim is successful.