Even under ideal circumstances, parenting can sometimes be a difficult and stressful job. These stressors can be exponentially compounded when a child is diagnosed with a chronic medical condition. Trying to juggle the child’s medical needs along with earning a living, providing care for other children in the home, and finding time for adequate self-care can sometimes seem like an overwhelming mountain to climb. Fortunately, Supplemental Security Income (SSI) may help provide some financial relief.
Usually, the process of applying for and obtaining Social Security disability benefits is long and drawn-out. Luckily, the Social Security Administration (SSA) has created the Compassionate Allowances program to help defuse some of the stress associated with certain medical conditions and the aftermath of their diagnoses. The Compassionate Allowances program expedites the application process, providing a shortcut past the typical application-denial-appeal process so that benefits can be quickly distributed to those who need them most.
As is usually the case when dealing with government agencies, response times are slow and the required documentation can be extensive and intimidating. However, if you or your child has been diagnosed with a disease or condition that has been determined to fit the criteria for Compassionate Allowances, the application process will be severely expedited. Tay Sachs Disease (TSD) is one of the conditions that qualify for a Compassionate Allowance.
Tay Sachs Disease (Infantile Type) - Condition and Symptoms
Infantile Tay Sachs Disease is a rare, inherited disorder that results in the progressive destruction of nerve cells in the central nervous system. This destruction occurs as a result of the absence of a key enzyme that acts as a catalyst to assist in the breakdown of ganglioside, a chemical found in nerve tissue. As a result, gangliosides build up in tissues and nerve cells in the brain. TSD results from mutations in the HEXA gene, and the infantile type is the most common form.
Children with TSD usually appear to be developing normally during their early infancy, but development begins to slow, typically around 6 months of age. At this time, typical developmental milestones such as sitting, turning over, crawling, etc. may not be met or these skills may be lost if they have been previously acquired as the muscles used for these skills begin to weaken. Affected children may also display an exaggerated startle reflex. As the illness progresses, children with TSD may have seizures, loss of hearing and vision, diminished intellectual development and paralysis. Other signs and symptoms of the disease include: hearing loss, decreased eye contact, muscle weakness, mental and social delays, loss of cognitive and intellectual skills, dementia, exaggerated startle response, irritability, motor difficulties, seizures and diminished physical development. Often, red spots will develop behind the retina and are associated with a progressive loss of visual acuity.
TSD is considered to be incurable and there is no known treatment. Symptoms are managed on an individual basis. Some medications may help to control seizures. Additional nutritional support, possibly by way of a feeding tube or intravenous fluids may also be necessary.
Filing for Social Security Disability with Tay Sachs Disease (Infantile Type)
A child diagnosed with Tay Sachs Disease, Infantile Type will automatically qualify for Social Security Disability benefits, because the SSA has determined that it fits the criteria for a Compassionate Allowance. If there is any good news to be found in the diagnosis, it is that the application process for disability benefits is significantly streamlined, allowing you and your child to begin receiving much-needed financial assistance much sooner than would have previously been possible. Provided that you have obtained the proper necessary documentation, you can expect the process to take approximately three weeks, after which you can begin receiving disability benefits.
Even though Tay Sachs Disease, Infantile Type meets the criteria for a Compassionate Allowance, it would still be highly advisable to seek out the assistance of a Social Security disability lawyer. An experienced disability lawyer will be able to review your application and make sure that you have the necessary documents in order to get your family the help you need. The assistance of an experienced professional will allow you to get through the entire process with a minimum of difficulty and will ultimately allow you to focus on the most important task at hand, caring for your child.
When filing for disability for a child with Tay Sachs Disease, Infantile Type, it is essential to have genetic testing or enzyme analysis to confirm the diagnosis.
Your Tay Sachs Disease (Infantile Type) Social Security Disability Case
If you are facing the heart-wrenching reality of a diagnosis of Tay Sachs Disease, Infantile Type, you can rest assured that your child will qualify to receive disability benefits from the SSA. However, it would still be very wise to have an experienced Social Security disability lawyer in your corner. A professional who is familiar with the process and its potential pitfalls, will be able to help you navigate the particulars of your case in order to prevent delays that could result from documentation errors or omissions.