If you or a member of your family has been diagnosed with a serious illness, it can often be difficult to know where to turn. Sorting through a multitude of possible treatment options, arranging for child care, addressing transportation issues, as well as the usual day-to-day responsibilities of life can all begin to feel overwhelming. When it all seems like it’s just too much, it might be comforting to know that Social Security disability insurance (SSDI) benefits may be able to provide a bit of relief.

Children with special needs take more time than most children, and their parents often find it impossible to continue working the kind of hours they had worked before their child was born. Unfortunately, this causes even greater financial strain. Fortunately, children with severe disabilities may qualify for Social Security disability benefits. The financial benefits paid can be used to help offset the extra expense of raising children with special needs. They can also be used to help your family maintain some degree of financial solvency while allowing you to spend more time with your child or to hire the specialized help your child needs.

In most cases, parents who are filing for disability on behalf of their dependent children can expect to spend six months or more working through the disability application process. This is because the requirements for Social Security disability aren’t always completely clear, and adjudicators often need more information regarding your child’s disability before they can make a determination on your case. Most people have to appeal the initial decision at least once before being approved for benefits.

For people who have the most severe, obviously debilitating conditions, the Social Security Administration (SSA) offers the Compassionate Allowance program. Those who qualify for a Compassionate Allowance can bypass most of the application and appeals process and will generally receive approval for benefits within a month of application.

To qualify for a Compassionate Allowance, you or your child must have one of the 88 listed conditions which the SSA currently recognizes as always qualifying for Social Security disability benefits. More conditions are being considered, and the list of Compassionate Allowances conditions is expected to grow.

The conditions approved as Compassionate Allowance listings include several rare diseases, terminal cancers, progressive neurological disorders, and a number of genetic conditions. Some of these are conditions which affect children and infants, such as Patau Syndrome.

Patau Syndrome (Trisomy 13) – Condition and Symptoms

Patau syndrome, also known as Trisomy 13 or Complete Trisomy 13 Syndrome, is an inherited genetic disorder which causes part or all of chromosome 13 to appear as a Trisomy (three times) when it is supposed to appear only twice. This in turn hinders a baby’s development, causing a number of physical and intellectual disabilities.

Typical symptoms associated with Patau syndrome include serious heart defects, spinal cord abnormalities, brain abnormalities, poorly developed eyes (often small), additional toes or fingers, cleft lip, cleft palate, and poorly developed muscle tone. Babies generally fail to thrive (gain weight and grow appropriately), they often have significant feeding problems, and may even stop breathing for elongated periods of time.

All of the symptoms of this disease will be present at birth. Because many of the symptoms are life threatening, it is not unusual for babies with Patau syndrome to die in the first few weeks of their lives, sometimes in the first few days. Fewer than 10% of children with this condition live past their first birthday. When they do, they typically have seizures, stunted growth, and mental retardation.

There is no cure or effective treatment for Patau syndrome. Treatment is on an individual basis, depending on which symptoms are present in any given case.

Filing for Social Security Disability with Patau Syndrome (Trisomy 13)

Since Patau syndrome is included in the Compassionate Allowances listings, you can rest assured that your child qualifies for Social Security disability benefits. Not only does he or she qualify, but you should be approved right away and start receiving your benefits within a month to six weeks after your initial application.

It is very important that the diagnosis and reasons for the diagnosis are clear on all medical documentation. Your medical documentation should include the results of all lab studies which were used in making the diagnosis of Patau syndrome, as well as the results of the clinical examination. This will generally include CT scan or MRI results. Of particular interest to the SSA are the all results of genetic testing which shows the Trisomy of chromosome 13.

Your Patau Syndome (Trisomy 13) Social Security Disability Case

Even though the eventual outcome of your Social Security disability claim is not in doubt, most claimants find it worthwhile to have a Social Security disability lawyer review their claim to make sure that all of the paperwork is in order. A claim can be denied at the initial stage if anything is out of order with the paperwork or if key medical documents are missing.

There is no upfront cost in hiring a disability attorney to help you with your case. They are not paid unless your disability claim is successful. If you are awarded benefits, then your attorney will receive either 25% of your back pay or $6,000, whichever is less.

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.

When you or your child has been diagnosed with a serious disorder it can be very frightening. You may be confused about what to do and where to turn for help. You may have wondered if you would be eligible for disability benefits through the Social Security Administration (SSA). If your disorder is listed as a Compassionate Allowance you can rest assured that you do indeed qualify for disability benefits.

The Compassionate Allowances are a list of rare and severe disorders compiled by the SSA that automatically qualify a person afflicted with such a disorder to receive benefits. Under normal circumstances, applying for benefits is a long process that can take anywhere from three to eighteen months and sometimes longer. Then, even after being approved, you may still have to wait weeks before you are able to start collecting your benefits. The Compassionate Allowances make it so you can go through an expedited process, shrinking the length from months to weeks. Once you are approved, you can start collecting benefits as soon as the next benefit cycle begins. If you are diagnosed with a severe disorder, the SSA recognizes the importance of getting you help sooner rather than later.

Spinocerebellar Ataxia (SCA) – Condition and Symptoms

Spinocerebellar Ataxia (SCA) actually refers to a group of genetic disorders characterized by a gradual increase in difficulty controlling the way a person walks, their speech, and hand and eye movement. If you have SCA, you have progressive brain damage of the areas that help to control these specific movements. Because of this brain damage, the cells that are in charge of these movements atrophy and cause ataxia, or a loss of control. Approximately anywhere from one to four out of every one-hundred thousand people are afflicted with some sort of Spinocerebellar Ataxia.

How quickly the disease progresses is dependent upon the specific gene mutation you have. Also, the earlier you are affected with the disease, the more likely it is to progress rapidly. For instance, with the disorders of SCA1, 2 and 3, it tends to be about 13-15 years before a person is wheelchair dependent, and death often occurs within 20-30 years of diagnosis. On the other hand, SCA6 and SCA11 have a much slower progression, and those with SCA8 usually have what is considered to be a normal lifespan.

At this time, there is no cure for Spinocerebellar Ataxia. There is currently no way to slow its progression. Instead, present treatments deal with relieving the symptoms. Medication can be used to manage problems such as sleeping difficulties and body stiffness. In conjunction, occupational therapy is often used to help the person learn different ways to perform fine motor skills with their disability. This can include everyday activities such as tying shoes and using silverware.

Those who have trouble walking may use canes or walkers, and speech therapy can be used for those with speech difficulties.

Filing for Social Security Disability with Spinocerebellar Ataxia (SCA)

It is bewildering to find out you or a loved one have Spinocerebellar Ataxia. It can be comforting to know that, under the Compassionate Allowances policy, you are automatically qualified to receive disability benefits. This means that the disability application process will be accelerated and that, once approved, you will start to collect your benefits as soon as the next benefits cycle begins. Disability benefits can lessen medical and living expenses for you, particularly if you become unable to work.

While you can feel confident that you will indeed be approved to receive disability benefits if you are diagnosed with Spinocerebellar Ataxia, it is still a wise decision to get in touch with a Social Security disability lawyer. These are professionals who deal exclusively with disability cases. A Social Security disability lawyer has the ability to help you through what can, at times, be an arduous process. Often, a claim becomes delayed or denied because of missing paperwork or incomplete documentation.

When applying for disability with SCA, hereditary Spinocerebellar Ataxia can be proven with molecular genetic testing. However, to show how severe a particular case is, a clinical exam of neurological functioning is necessary. If molecular genetic testing is not available to you, the clinical exam may be adequate. Documents must show that other, treatable possibilities for ataxia have been exhausted.

Your Spinocerebellar Ataxia (SCA) Social Security Disability Case

Although you can feel positive that your Spinocerebellar Ataxia is a Compassionate Allowance and that you will be approved for benefits, it’s always a smart idea to talk to a Social Security disability lawyer. The disability attorney will review your case and counsel you on your options. If anything, it is a good idea to have a lawyer look over your paperwork to make sure everything is in order. Disability attorneys are not paid unless you are awarded disability benefits. If you are awarded benefits, then your attorney will either receive 25% of your back pay or $6,000, whichever is less.

Discovering your child has been born with a rare disorder is especially disconcerting. Extra attention and medical care is often needed, and sometimes parents may have to work fewer hours in order to provide that care. This may cause financial problems for the whole family. Many people are interested in finding out if they can receive disability benefits, but are concerned about how long the process takes and how difficult it sometimes is.

However, the Social Security Administration (SSA) has realized that there are special cases that require a quicker disability application process. Because of this need, the SSA has created the Compassionate Allowance program. The Compassionate Allowances are a list of rare and serious disorders that automatically qualify you or your child for disability benefits. If you have a disease that is considered a Compassionate Allowance, you will also be able to go through a quicker process when applying for disability benefits. Most claimants are approved within a few weeks of applying for disability benefits.

Rett (RTT) Syndrome – Condition and Symptoms

Rett (RTT) Syndrome is a progressive neurologic disorder that affects only girls. Children with this disorder appear normal at birth and show normal mental and motor development until around 6 to 18 months. After this time, their development seems to remain stagnant and then quickly starts to deteriorate. The common trademark of this disease is the loss of purposeful hand use, which is then replaced by repeated stereotyped movements. By 18-24 months, screaming fits and crying that doesn’t respond to normal remedies such as rocking, feeding or changing is common.

Other features of Rett (RTT) Syndrome are panic attacks, autistic-like features, teeth grinding, temporary pauses in breathing, tremors, an abnormally small head and seizures. Seizures occur in about 90% of females affected with this disorder. After the window of quick deterioration the condition remains rather stable. However, many girls will eventually develop hand or foot deformities and abnormal muscle tone as they grow older.

There is no cure for Rett (RTT) Syndrome as of this time. Treatments deal with lessening and managing symptoms, and providing social and psychological support for the family. A large number of females with RTT do survive into adulthood, but are extremely dependent. There is a higher occurrence of sudden and unexplained death in girls with Rett (RTT) Syndrome.

Filing for Social Security Disability with Rett (RTT) Syndrome

If your daughter has been diagnosed with Rett (RTT) Syndrome, she will qualify for Social Security disability benefits under the Compassionate Allowances act. This means that you will be able to go through an expedited process when filing for benefits. Usually, the process takes between 3 to 18 months. With a Compassionate Allowances claim that time is shortened to only a few weeks. Also, under normal circumstances, you may have to wait even longer after being approved before actually collecting any disability benefits. In the expedited process you and your daughter can start to receive benefits almost immediately, generally as soon as the next benefit cycle begins.

While you can be sure that your daughter will be able to receive the help she needs, it is always good practice to seek the services of a Social Security disability lawyer. A disability lawyer will have dealt with similar cases and can help you to navigate through the extensive paperwork. Many times, a case is delayed or denied simply due to out of order paperwork or incorrect documentation.

Every Compassionate Allowances disorder has specific medical documentation that is needed to show proof of the disease. For Rett (RTT) Syndrome, molecular genetic testing showing a sequence analysis of the MECP2 gene on the X-chromosome will identify four-fifths of those afflicted. In addition, clinical findings showing a loss of developmental skills and repetitive motor movements are also indicative of the disease.

Your Rett (RTT) Syndrome Social Security Disability Case

Filing for Social Security disability, even with a Compassionate Allowance, can bring a lot of extra unneeded stress to you and your family. Because of this it’s a great idea to contact a Social Security disability lawyer. They will be able to take a lot of the work off your hands, giving you more time with your daughter and other family. A disability lawyer can also help ensure your case does not get delayed because of disorganized paperwork or missing documents.

Finding out that your new baby has been born with special needs can be very overwhelming. If the disease is particularly severe, you might worry if you will have the financial means to make sure that your child has the best care available.

Under normal circumstances, applying for disability benefits can take as long as three to six months, and then you still have to wait before you can start collecting benefits. Sometimes, however, you just don’t have that kind of time.

It can be startling to visit your doctor for a routine check-up and instead be told you have a serious disease. These diagnoses often pop up out of nowhere, and rarely are we prepared for them. A person often doesn’t know how he or she will afford the medical care, or if they will be able to continue working. Social Security disability benefits offer a way to ease the financial burden. Unfortunately, it usually takes a long time for the application to go through, anywhere between six months to two years.

When you are diagnosed with cancer, your world may be turned upside down. It might be difficult to know who to turn to and what to do. Sometimes you may only have a short time available and don’t want to spend that time worrying about medical bills and general finances. The Social Security Administration (SSA) has recognized the problems facing you and others in similar situations. This is why they have created the Compassionate Allowances. The Compassionate Allowances are a group of rare and serious disorders that automatically qualify a person for SSA disability benefits.

If you are diagnosed with a rare or serious disorder it can be quite scary. It may be difficult to know what to do, what options you have, and even how you will pay for medical and general life expenses. You might be curious whether or not you qualify for disability benefits and, if so, how you go about applying for them. In order to expedite the disability application process for certain individuals, the Social Security Administration (SSA) has created a list of disorders known as the Compassionate Allowances.

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.