Compassionate Allowance - Leigh’s Disease

Most people are aware of the fact that you can apply for Social Security disability benefits if you become disabled because of an injury or illness, but many may not realize that you can also apply for Social Security disability benefits if your child has a debilitating condition. Because children with special needs cause parents to incur expenses above and beyond the normal expenses of rearing children, the SSA recognizes the need for disability benefits such as SSI, Medicaid and Medicare to be extended to families who are raising children with significant disabilities.

It can be difficult and time consuming to establish a disability claim for your child, and most claimants should strongly consider retaining a Social Security disability lawyer. A typical Social Security disability claim takes between six and eighteen months from the time of the initial claim until the time when the claim is approved and benefits are paid. For most Social Security disability claimants, there is no way around the tedious claims and appeals process other than to get the best Social Security disability lawyer they can and wait it out.

There is some good news for those who have children with conditions which are clearly debilitating, however. Since 2008, the Social Security Administration (SSA) has recognized a number of conditions, called Compassionate Allowance Listings, which always qualify people for Social Security disability benefits. For those who have these conditions (or have children who do), much of the claims process can be circumvented.

Instead of a year or longer, most Compassionate Allowance claims only take about three weeks before they are approved. This is in large part because the SSA doesn’t need further proof of disability once they have a diagnosis of a qualifying condition. Because the condition is considered to automatically qualify for disability benefits, there is no need for further evaluation and the claim can be approved right away.

Leigh’s Disease – Condition and Symptoms

Leigh’s Disease is an inherited disorder of the neurometabolic system. It mainly affects children’s central nervous system. The disorder is progressive, usually first showing between the ages of 3 months to 2 years old. It is caused by mutations in the child’s DNA caused by lack or deficiency of the pyruvate dehydrogenase enzyme.
These mutations cause interference with the brain’s energy sources and especially affect motor skills and movement. While there are numerous varieties of the disease, they all tend to progress rapidly.

Early symptoms of Leigh’s Disease include poor suckling and loss of motor skills, particularly head control. Other common symptoms include appetite loss, irritability, constant crying and fussiness, seizures, and vomiting. Later, the child will generally experience weakness, poorly developed muscle tone, respiratory problems, and impaired kidney function.

While some children with Leigh’s Disease have managed to survive into their teenage years, most die before the age of seven, even if they only have partial deficiencies. Those with the full spectrum of symptoms typically pass on much sooner. There is no cure for Leigh’s Disease, and most of the treatments currently being used to deal with the symptoms. In some cases, a low carb, high fat diet has been shown to extend length and quality of life.

Filing for Social Security Disability with Leigh’s Disease

When your child has Leigh’s Disease, he or she qualifies for Social Security Disability benefits. Additionally, you qualify for a compassionate allowance, and should be able to avoid a lot of the headache of the normal Social Security disability claims and appeals process, as long as you make sure that everything is in order with your claim.

Your medical files should include, at a minimum, the results of the clinical evaluation which determined that your child has Leigh’s Disease. This should encompass physical symptoms noted, family medical history, a muscle biopsy, genetic test results, blood enzyme test results, and any nerve conduction or electromyography test results.

Your Leigh’s Disease Social Security Disability Case

One word of caution is in order: Don’t assume that because you should be automatically qualified for Social Security Disability benefits that nothing can go wrong in the process. Attention to detail is important when filing a Social Security Disability claim, both from you and from all of the medical professionals who are treating your child.

The best way to make sure that your claim goes directly into a compassionate allowance, as it should, is to have a Social Security disability lawyer handle your claim. Although you have little doubt of being ultimately approved for Social Security disability benefits when your child has Leigh’s Disease, a competent Social Security Disability attorney can make all the difference between receiving benefits a month after you apply or going through several months’ worth of appealing your case.