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.
The Social Security Administration (SSA) has created a list of severe disabilities called Compassionate Allowances to combat this sort of problem.
The Compassionate Allowances are a group of rare and severe disorders that automatically qualify you or your child to receive disability benefits. The SSA recognizes that certain conditions require immediate attention.
Through the Compassionate Allowances ruling you can go through a quicker disability application process. Instead of months the time is shrunk to weeks.
Often, parents of children with special needs either end up having to work extra hours to help with finances, which leaves less time with their children, or they need to stop working to care for the child and then they are left with little to no money.
With the expedited process for Compassionate Allowance claims, you can make sure you are financially stable.
Spinal Muscular Atrophy (SMA) is one of the 88 conditions that qualify for the Compassionate Allowance program.
Spinal Muscular Atrophy (SMA) – Types 0 and 1 – Condition and Symptoms
All types of Spinal Muscular Atrophy (SMA) are a group of hereditary diseases that cause the muscles in the legs and arms of infants and children to weaken and become atrophied. SMA is caused by a missing or abnormal gene called SMN1, better known as the survival motor neuron gene.
SMN1 produces a protein that is necessary for the proper function of motor neurons. When a baby lacks this protein, the lesser motor neurons in the spinal cord deteriorate and die.
The particular types of Spinal Muscular Atrophy that are the most severe are Types 0 and 1. The types are established by the age of onset. Type 0 is prenatal and Type 1 becomes apparent at birth or within the first few months following.
Babies with these two types have symptoms of floppy arms and legs, weak movements, trouble swallowing, an impaired sucking reflex and difficulty breathing. In general, the legs are usually more impaired than the arms.
At this time there is no cure for SMA. There is also no way to treat the increasing weakness the disease causes. Treatments that are available deal only with lessening the symptoms and preventing complications.
Because children with Spinal Muscular Atrophy Types 0 and 1 have such a short life span, it is not beneficial for them to see an orthopedist. Supportive care is necessary in the forms of feeding tubes and help to the respiratory system.
The prognosis for children with SMA types 0 and 1 is not good. Those with type 0 never achieve any significant motor skills and usually pass away between 0 and 6 months. Children with SMA1 may eventually learn to sit up with support, but little else.
They generally survive about 2 years before needing respiratory support. If support is given they may live slightly longer.
Filing for Social Security Disability with Spinal Muscular Atrophy (SMA) – Types 0 and 1
If your child has been diagnosed with Spinal Muscular Atrophy (SMA) Type 0 or 1, then you can feel confident that he or she will be eligible for Social Security disability benefits. Due to the Compassionate Allowances, you will be able to go through an expedited process when filing for the benefits.
It will only take about a few weeks for the application process and you can begin to collect the disability pay as soon as the next benefit cycle starts. Even though you can be assured your child will receive help through the Compassionate Allowances, it’s still a good idea to contact a Social Security disability lawyer.
They can review your case and make sure you have the proper documentation necessary.
There are specific documents needed when filing for disability with Spinal Muscular Atrophy Types 0 and 1. A clinical evaluation that includes medical and family history as well as a physical exam is necessary, either for the pregnant mother or the newborn.
To confirm the suspected diagnosis, molecular testing of the SMN1 gene is necessary.
Your Spinal Muscular Atrophy (SMA) – Types 0 and 1 Social Security Disability Case
If your child has Type 0 or 1 of Spinal Muscular Atrophy and you are planning to file for Social Security disability it is important to speak with a disability lawyer right away. Often, cases are delayed or denied simply because paperwork is missing or out of order.
An attorney or advocate will be able to make sure that you have the necessary paperwork and medical documentation on file.
Disability attorneys are paid on a contingency basis and are not paid unless you are awarded benefits. If you are awarded benefits, they either receive 25% of the back pay you are awarded or $6,000, whichever is less.
Additional Resources
- Spinal Disabilities List
- How To Apply For Disability Benefits With A Spinal Condition
- How Severe Does My Spinal Condition Have To Be To Get Disability Benefits?
- Compassionate Allowance Initiative
- About Social Security Disability Insurance (SSDI)
- How Severe Does My Ankylosing Spondylitis Have To Be To Get Disability Benefits?
