There is perhaps no news more devastating to a parent than hearing that their child has a debilitating or terminal condition. Life changes quickly when we realize that the time we have left with a precious little one is limited, and that while your child is still alive, they are going to need a lot of extra care.
For many parents of disabled children, the ability to continue working full time is severely compromised, leaving parents with difficult decisions regarding how much time and effort they can commit to working a job versus how much time they can spend directly caring for their child. Even if they do continue to work full time, the costs of child care for children with significant disabilities is often far greater than other parents face.
Fortunately, the Social Security Disability system was set up in part to help parents in these kinds of situations. If your child is qualified for Social Security Disability, you (as their representative) can receive financial help in the form of Social Security Disability payments, which can be used to help defray the added expenses a disability can bring into your home.
Up until 2008, all applicants for Social Security Disability benefits essentially followed the same process. You put in an application, waited three to six months for a determination (which in most cases was initially turned down), then spent another year or longer in the appeals process. Obviously, if you have a disabled child at home who needs your full time attention or the added income to help cover expenses, you can’t afford to wait that long.
Fortunately, the Compassionate Allowances program was started in 2008. This program is designed to help those who have conditions which are automatically considered to qualify for disability benefits to get through the application and screening process much more quickly. In cases where an applicant qualifies for a Compassionate Allowance, the wait time is generally cut from an average of six months to an average of right around three weeks.
Farber's Disease (FD) – Infantile – Condition and Symptoms
Infantile Farber’s disease is one of several childhood diseases and syndromes that qualify for a Compassionate Allowance. It is a lipid storage disease, meaning at it causes excess oils, fatty acids, and other lipids to build up in joints, the nervous system, and other body tissues. In many cases, various other organs (often the kidneys, liver or heart) are also affected.
In most cases, the signs of the disease are apparent in the first weeks of a baby’s life. Typical symptoms include impaired motor ability, impaired mental ability, difficulty swallowing, and lumps or masses under the skin. There are also some signs with a baby’s joints and vocal chords that a doctor will be able to recognize as typical of Farber’s disease.
Often, children with Farber’s disease need a breathing tube. In some cases, liver and spleen problems result from Farber’s disease; and when they do, these symptoms need to be treated separately.
There is no curative treatment of Farber’s disease. At present, all treatment is aimed at controlling the symptoms and relieving pain. While some of the physical symptoms can be treated with some degree of success, there is no treatment or cure for the neurological impairments; both of which are progressive. Most children with Farber’s disease die by age two.
Filing for Social Security Disability with Farber's Disease (FD) – Infantile
When your child has been diagnosed with Farber’s disease, you automatically qualify for Social Security Disability under the Compassionate Allowances program. The most important thing to do when it comes to your application is to make sure that all of the needed supporting documentation accompanies your application.
In particular, you need copies of the lab tests that confirmed that your child has Farber’s disease, including any biopsy or mass spectrometry results. You will also need your doctor’s description of the developmental and/or physical features that led to his diagnosis.
The best way to make sure all of your paperwork is in order is to consult a Social Security Disability attorney. Even more so than your doctor, a skilled Social Security Disability lawyer will know exactly what needs to appear on all of the pertinent documents to make sure that your case is accepted for a Compassionate Allowance.
Your Farber's Disease (FD) – Infantile Social Security Disability Case
Fortunately, your case is not likely to be held up in the Social Security Disability claims and appeals process as long as it’s filed correctly and all of the supporting medical evidence is present. Compassionate Allowance cases are usually settled within a month, and start paying out Social Security Disability benefits immediately thereafter.
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