Parents whose children are diagnosed with debilitating or deadly diseases face unique challenges, both emotionally and financially. Like any parent, you want your child to have the best care they can possibly have. And, as much as you hope and pray for a cure to whatever ails your child, until a cure is found, you want your child to have the best quality of life possible.
For many parents, this means making tough decisions about whether to continue working or stay home and take care of a child with special needs. Whether you decide to stay home or continue working and hire contract nursing help for times when you need to be at work, this can cause a great deal of financial strain.
Fortunately, children with debilitating conditions which cause them to fail to develop at an age appropriate level are often qualified for Social Security disability benefits. There are many types of disorders, diseases, and other medically verifiable conditions which may qualify your son or daughter for Social Security disability benefits such as SSI, Medicare and Medicaid.
In most cases, you will need to go through the Social Security Disability claims process. This usually takes about 6 months. For those whose claims are denied (and nearly 70% of claims are denied initially), the appeals process can take several more months. In some instances, the appeals process can drag on for several years.
There are some conditions, however, which always meet the Social Security Administration (SSA)’s requirements for disability. These conditions, called Compassionate Allowances, include several rare diseases, cancers, and neurological disorders. They even contain a number of conditions which typically affect infants and children, such as MPS III.
If you or your child has a condition which is on the Compassionate Allowance Listings, you won’t need to worry about the strenuous claims and appeals processes. Instead, your claim will be shuffled to the front, and you can expect an approval within three weeks. Generally, actual benefit payments start the next benefit cycle after approval.
MPS III (Sanfilippo Syndrome) – Condition and Symptoms
MPS III, also called Sanfilippo Syndrome, is a disease which affects the functioning of enzymes which are needed to break down sugar molecules in the body’s mucus and other fluids. Because those with MPS III lack these enzymes (or have malfunctioning enzymes), carbohydrate chains form in their blood and tissues in the body. This results in progressive damage which is permanent and irreparable.
The disease typically begins to show symptoms in children who are between two and six years old. Symptoms include neurological damage, deafness or hearing loss, degeneration of the corneas, hernias, growth of excessive body hair, clawing of the hands, stiffness in the joints, coarse facial features, retardation, respiratory infections, heart disease, and sleep apnea. Because of the loss of cognitive ability, this condition often leads to behavioral problems as well.
Most children with MPS III live to become teenagers, and some even live into early adulthood. Some children with MPS III do pass away at earlier ages. There is no cure for MPS III, nor is there any treatment shown to slow its effects. Most medical treatment currently being employed centers on improving the child’s quality of life, relieving pain and treating the conditions which result from the disease. In some cases, exercise and physical therapy can help hold off joint and mobility problems.
Filing for Social Security Disability with MPS III (Sanfilippo Syndrome)
If you have a child with MPS III, you qualify for a Compassionate Allowance. This means, of course, that you automatically qualify for Social Security disability benefits. It also means that you will receive your benefits much faster than those with less serious (or less obviously disabling) conditions. You should expect to start receiving benefits within a month to six weeks of the time you applied.
You will want to make sure that all of your medical documentation is in order. One of the leading causes of delays in the Social Security disability system is incorrect or incomplete medical documentation. For a child with MPS III, you will want to make sure that the documentation includes the clinical exam which first diagnosed the impairments which led to the diagnosis of MPS III. You should also make sure that the results of all lab tests which were conducted are included. These should show the results of genetic tests as well as enzyme study and urine tests. Finally, make sure that copies of the results of any MRO or CT scan are included.
Your MPS III Social Security Disability Case
Even though there is no question about your eligibility for Social Security disability benefits – after all, your son or daughter qualifies for a compassionate allowance with MPS III – it’s still a good idea to have a Social Security attorney review your case. Not only does this ensure that all of the paperwork is in order, but it also takes a lot of the stress and strain away from you.
