Compassionate Allowance - Sandhoff Disease

Finding out that you or your child has been diagnosed with a severe disorder can be rather frightening. Extra time and attention is necessary, and you may have to quit working to have more time available for your new baby, leading to financial difficulties and stress. The Social Security Administration (SSA) has created what is known as the Compassionate Allowances. The Compassionate Allowances are a collection of rare and serious disorders that automatically qualify you or your child for disability benefits.

Generally, the process of applying for disability benefits can be rather long and tedious. It can take anywhere from three to six months, and often even after being approved you might not be able to start collecting benefits right away. The Compassionate Allowances make it so you can follow an expedited process. On top of that, you can begin receiving your benefits as soon as the next benefit cycle starts. This can be a big help when your child has a very serious disorder. Often, you might not have the time available to spend so long applying for disability benefits. This way, you can rest easier knowing help will be on its way rather quickly.

Sandhoff Disease – Condition and Symptoms

Sandhoff Disease is a rare genetic disorder causing continuing deterioration of the central nervous system. It occurs when there is a defect in the gene HEXB, which creates a deficiency of the enzyme beta-hexosaminidase. The lack of this enzyme causes lipids (fats) to build up in the brain and body organs. Sandhoff Disease usually begins exhibiting symptoms around six months of age. Infants with this disorder initially appear normal, until around three to six months when their development begins to slow and the muscles that are used for movement begin to weaken.

There are many symptoms that can be indicative of Sandhoff Disease: exaggerated reaction to noise, weak motor control, early blindness, continuing mental deterioration, and an abnormally large head and seizures are a handful of these. Parents should also be on the lookout for respiratory problems, cherry-red spots in the eyes, a doll-like facial appearance and quick contractions of the muscles, also known as myoclonus.

Sandhoff Disease does not have a specific recommended treatment. Supportive treatment is necessary in the forms of proper nutrition, hydration and making sure the airways remain open. Anticonvulsants can sometimes help to control or lessen the seizures. Currently, studies are being done using stem cell transplants from umbilical cord blood. Although so far these have not provided a treatment or a cure, scientists are continuing to study and experiment.

The prognosis for those with Sandhoff disease is poor. Children affected with the infantile form of the disorder rarely survive past three months. Death is usually due to a respiratory infection.

Filing for Social Security Disability with Sandhoff Disease

If your child has been diagnosed with Sandhoff Disease, you can feel confident that you will be able to receive disability benefits from the SSA. Since Sandhoff Disease is listed as a Compassionate Allowance, you will also be able to go through an expedited disability application process. This is especially helpful when you need help with finances as soon as possible. Even though you can be sure you and your child will receive the help that you need, it’s still smart to contact a Social Security disability lawyer. The application process can be confusing at times, and a disability lawyer can help you sort through all the paperwork.

People may be surprised to learn that cases are often delayed or denied simply because of out of order paperwork or missing medical documentation. With the help of a disability lawyer, you can be sure that everything is in the right place and the documentation you provide is exactly what’s needed. For Sandhoff Disease, the necessary medical proof is genetic testing showing a mutation of the HEXB gene. However, definitive genetic testing might not be available everywhere. In such a case, other laboratory tests tissue biopsy and molecular cell analysis may be sufficient.

Your Sandhoff Disease Social Security Disability Case

With a new baby, it can be mind-boggling to try to maneuver through a Social Security disability case. It can take time away from what’s most important, which is caring for your little one. Social Security disability lawyer can provide a lot of assistance in this area and improve your chances of avoiding a delay in your case because of incorrect documentation or unorganized paperwork.

Compassionate Allowance - Mantle Cell Lymphoma (MCL)

Most people who need to file a Social Security disability claim need to be prepared to wait for several months before their claim is considered. This is in part because the Social Security Administration (SSA) receives more claims than it can possibly handle in a timely manner and partly because the definition of complete disability by the SSA is very narrow, including only those who are incapable of performing any kind of substantial gainful activity.

Compassionate Allowance - Non-Small Cell Lung Cancer

The Social Security Administration (SSA) recognizes that there are some medical conditions that are so serious that benefits need to be received as quickly as possible in order to provide the most help.

What Are Compassionate Allowances?

To efficiently do this, the Compassionate Allowance listing was created so that individuals with certain disorders can go through an expedited process when applying for benefits, and can receive those benefits that they qualify for sooner rather than later.

Compassionate Allowance - Liver Cancer

For those who live with serious disabilities and are unable to continue working, Social Security disability programs like Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), Medicaid and Medicare provide a safety net, allowing recipients to continue with some measure of financial independence. Most people who make Social Security disability claims need to be prepared to wait several months for a decision on their claim.

Compassionate Allowance - Mucosal Malignant Melanoma

If you find yourself in the unfortunate circumstance of being disabled and unable to work because of an injury or illness, Social Security disability programs such as SSDI, SSI, Medicaid and Medicare exist to help you stay on your feet financially. While they don’t provide the kind of income most of us are accustomed to, they do provide a safety net which can help prevent us from needing to be dependent on others for financial support.

In order to qualify for Social Security disability, you must fit into a very narrow definition of disability. The Social Security Administration (SSA) looks at disability differently than Workers Compensation and most disability insurance programs. To qualify as “disabled” for Social Security purposes, you must have a medically verifiable condition which makes it impossible for you to continue doing any kind of work which you have performed in the past fifteen years. You must also be disabled severely enough that you could not reasonably be expected to be trained for any work which is available to people of your experience, age, and education level.

As you can imagine, determining whether a person is disabled to this degree can take a long time. When you add this to the fact that the SSA deals with millions of claims every year, you get a formula for a long wait before collecting benefits. For most claimants, the total wait ends up being between six and eighteen months.

In some cases, the long process can be avoided, however. If you have one of the conditions which the SSA considers to be so invariably disabling that they always qualify for Social Security disability benefits, you can be approved within as little as three weeks. These conditions, known as Compassionate Allowance Listings, represent the SSA’s acknowledgment that it is their responsibility to quickly help our most severely disabled citizens.

The conditions which qualify for Compassionate Allowances include several rare diseases, progressive neurological disorders, and cancers such as Mucosal Malignant Melanoma.

Mucosal Malignant Melanoma – Condition and Symptoms

Mucosal Malignant Melanoma is an aggressive form of melanoma which originates in the mucus membranes rather than on the skin. In particular, it attacks the mucus membranes which line the digestive, respiratory and genitor-urinary tracts. Alternately, it may present itself in the cerebral meninges or in the eyes. These types of melanomas are very difficult to detect and diagnose in their early stages, and hard to treat in their later stages. Because of this, the vast majority of people diagnosed with Mucosal Malignant Melanomas have a very poor prognosis.

Most often, Mucosal Malignant Melanomas affect people in their 60s and older. The actual survival time with the disease can vary significantly depending on where the melanoma strikes and its stage at the time of discovery. Current treatments involve radiation, chemotherapy and surgery. If the cancer has metastasized, it is not curable.

Filing for Social Security Disability with Mucosal Malignant Melanoma

Mucosal Malignant Melanoma is one of the conditions listed for a Social Security Compassionate Allowance. Because of this, you should have no concern regarding whether or not your claim will be approved. Not only should it be approved, but it should be flagged for a compassionate allowance and approved within a month of your initial filing.

The medical documentation needed for a compassionate allowance for Mucosal Malignant Melanomas is fairly straight forward. Essentially, you need a pathology report showing that you do indeed have Mucosal Malignant Melanoma. There are no additional tests required in most cases, though you will want to make sure that the tests which were performed and their results are fully documented.

Your Mucosal Malignant Melanoma Social Security Disability Case

If you’re not sure what you’re looking for in the medical files (and most people aren’t), you should consider having a Social Security disability attorney evaluate your case and make sure that all of your claim forms and supporting documentation is as it should be. While there’s no question that you qualify for Social Security disability and receive benefits, ensuring that your application is approved the first time through and granted a compassionate allowance helps you start receiving your benefits in a timely manner.

Social Security disability attorneys work on a contingency basis and are not paid unless you are awarded benefits. If your claim is successful, then they receive 25% of the back pay you are awarded or $6,000, whichever is less.

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.

Compassionate Allowance - Niemann-Pick Disease (NPD) - Type A

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.

Niemann-Pick Disease (NPD) - Type A – Condition and Symptoms

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.

Filing for Social Security Disability with Niemann-Pick Disease (NPD) - Type A

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.

Your Niemann-Pick Disease (NPD) - Type A Social Security Disability Case

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.

Compassionate Allowance - Neonatal Adrenoleukodystrophy

There’s nothing more crushing to a parent that learning that their child has a fatal, debilitating disease. Every minute with your child becomes priceless, knowing that you won’t be able to watch him or her grow to adulthood. On top of the emotional toll, having a child with a fatal disease can bring a huge financial burden on a family, especially if the child requires special nursing attention.