Compassionate Allowance - MPS I (Hurler Syndrome)

If you have a child with a serious disability that hinders him or her from normal development and an age appropriate level of independence, you may qualify for Social Security Disability benefits. The specific requirements vary depending on what kind of disability your child has, and the degree of their disability, and the process of filing for Social Security Disability benefits is often rather lengthy (six to eighteen months is common) because the Social Security Administration has a very heavy case load.

One positive step the Social Security Administration has taken towards streamlining the process for those with the most serious types of disability was to enact the Compassionate Allowances Listings. The Compassionate Allowance program specifies several medically verifiable conditions that always meet the conditions for Social Security Disability benefits. Because of this, the SSA does not need to go through the typical, lengthy process in order to determine that people with these conditions qualify for benefits.

The Compassionate Allowance Listings include numerous rare diseases; including several terminal cancers, neurological disorders and dementias. There are several infantile and childhood diseases amongst the listings as well, including MPS I (Hurler Syndrome).

If you or your child has a condition that qualifies for a Compassionate Allowance, you can expect to be approved for Social Security Disability benefits in about three weeks, and to start receiving benefits, including a small amount of back pay dating to the day you made your intent to file known, in the next benefit cycle. Because MPS I always qualifies for disability benefits, the SSA does not need to put you through the normal application process, as long as your medical documentation is in order.

MPS I (Hurler Syndrome) – Condition and Symptoms

MPS I is a mucopolysaccaridosis disease, meaning that it affects the body’s ability to break down sugar chains that are found in mucus and other body fluids. The condition is inherited, and first symptoms may occur at any time from 6 months to 8 years of age. There are several types of mucopolysaccaridosis, but MPS I (also called Hurler Syndrome) is the most severe type.

The body’s inability to break down long chains of sugar molecules leads to an accumulation in the cartilage, blood, bone and connective tissue, which in turn leads to damage in several body organs, most notably the heart. Symptoms of the disease include: spinal abnormalities, clouded corneas, stunted growth, joint disease, deafness, joint stiffness, progressive mental retardation, distinct facial features such as a low set nasal bridge, claw hand and carpal tunnel syndrome. Mobility is often affected due to joint and connective tissue damage caused by MPS I.

There is currently no cure for MPS I. Enzyme replacement therapy and bone marrow transplantation have been tried, with some success in treating the symptoms of the disease. Most treatment currently being used for MPS I focuses on delaying damage to the organs affected and alleviating suffering so the patient can have a better quality of life. Death generally occurs by age ten, usually as a result of heart disease or other pulmonary disorders.

Filing for Social Security Disability with MPS I

When your child has MPS I, they qualify for a Compassionate Allowance. This means that you will not only be approved, but you will be approved quickly and avoid much of the hassle that often accompanies the process of filing for Social Security Disability benefits.

Your main concern when filing for Social Security Disability with any condition that qualifies for a Compassionate Allowance is to make sure that all of the claim paperwork is filled out completely and correctly, providing all necessary medical documentation is included. It can be helpful to communicate with your child’s doctor to let him know that the SSA will be sending requests for information and that these need to be returned as soon as possible, as your ability to collect Social Security Disability benefits depends on this.

Medical documentation required to confirm a diagnosis of MPS I (Hurler’s Syndrome) includes the findings of a clinical exam describing the characteristic features of MPS I. This should include an eye exam, heart exam, respiratory system exam, and spleen and liver laboratory studies. The lab results should show evidence of the genetic mutations characteristic of MPS I and signs of developmental delays.

Your MPS I (Hurler’s Syndrome) Social Security Disability Case

Most people find it helpful to contract a Social Security Disability lawyer when dealing with the SSA. Even though there is no doubt you will qualify for benefits, it’s still a good idea to have a qualified attorney take a look at your claim to make sure everything is in order. Social Security disability lawyers are thoroughly familiar with the SSA disability system and compassionate allowances.

To have a qualified Social Security Disability attorney review your claim with you, fill out the request for a free evaluation of your claim today.