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.
The Social Security Administration (SSA) provides a safety net for families in this situation. If your child has a serious disability, you may qualify for Social Security disability benefits called Supplemental Security Income (SSI). Further, if your child’s condition is listed by the SSA as a Compassionate Allowance, you may be able to start receiving benefits right away.
The Compassionate Allowance program was started in 2008 in order to allow claimants with the most serious and clearly debilitating conditions to avoid the necessity of going through the otherwise long claims and appeals process. Most people wait between six months and two years before their claim is ultimately approved. Those who qualify for a compassionate allowance are approved in less than a month, and start to receive benefits in the very next billing cycle in most cases. There are currently 88 distinct conditions which qualify for a Compassionate Allowance, including several childhood and infantile diseases.
When your child has a condition, like Neonatal Adrenoleukodystrophy, which qualifies for a Compassionate Allowance, you automatically qualify for benefits and can expect to start receiving help right away. Notify the SSA immediately of your intent to file a claim for Social Security disability benefits.
Neonatal Adrenoleukodystrophy – Condition and Symptoms
Neonatal Adrenoleukodystrophy is a leukodystrophy disorder which damages the membrane which surrounds the brain’s nerve cells (called the myelin sheath). The disorder also affects the testes and the adrenaline glands. The disease is caused by a genetic mutation of the PEX genes.
Common symptoms of Neonatal Adrenoleukodystrophy include poor eating, high forehead, a broad bridge on the nose, cross-eyed, deformed skin folds, deformed ear lobes, seizures, liver cysts, hypotonia, and effects on bone development. Some other symptoms which may occur with the disorder are hearing loss and deafness, liver problems, hemorrhaging, interior bleeding in the head, and eye problems.
Most children with Neonatal Adrenoleukodystrophy pass away before they turn three years old. Some children with the disorder do learn to talk and walk, while others never reach these milestones.
Treatment is critical for this condition. If it is detected early and treated appropriately, many children can survive to school age. Over three quarters of those who survive the first year can make it to school age if the NALD is non-progressive.
There is no actual cure for the disease, and treatment is designed to deal with the symptoms and to support life. Often, children with this disease need feeding tubes, vitamin supplements, and hearing aids. Therapies for liver dysfunction and seizures are also commonly used to control symptoms.
Filing for Social Security Disability with Neonatal Adrenoleukodystrophy
If your child has Neonatal Adrenoleukodystrophy, you qualify for a compassionate allowance and should be able to start receiving Social Security disability benefits right away, as long as all of your claim forms and medical documentation are clear and correct. In most cases, your benefits will begin within a month of filing.
You should consider working with a Social Security disability attorney, just to make sure that everything is in order. In addition to ensuring that your claim is flagged for a compassionate allowance, a Social Security disability lawyer handle your claim allows you to relax and focus on taking care of your child.
When filing for Social Security disability benefits with Neonatal Adrenoleukodystrophy, you will want to make sure that the medical file contains a full report of the child’s plasma abnormalities, genetic mutations, and a review of his or her clinical history and lab results. It is imperative that a complete exam is included in the file, and that the exam is current.
Your Neonatal Adrenoleukodystrophy Social Security Disability Case
When you contact a Social Security Disability lawyer to handle your compassionate allowance claim, you get the best of both worlds. You are able to ensure that your claim is filed correctly and with all of the supporting documentation which is needed to substantiate your claim. You also get these services at an extremely reasonable price, because attorney disability attorneys work on a contingency basis and are not paid unless your claim is successful. If your claim is approved, your attorney will either receive 25% of your back pay or $6,000, whichever is less.