Compassionate Allowance - Sanfilippo Syndrome

Sanfilippo Syndrome, which is a subtype of Mucopolysaccaridoses III or MPS III, is automatically medically qualified for Social Security Disability (SSD) benefits, though you must still complete the full application process with the Social Security Administration in order for your child to be approved for benefits.

Supplemental Security Income Benefits

Disability benefits that are available to children are paid through the Supplemental Security Income (SSI) program. SSI is need-based and has no work credit requirements. It is designed to provide financial support to disabled children and adults that have minimal income and other financial resources and who may or may not have the work history to qualify for benefits through the Social Security Administration’s (SSA’s) Social Security Disability Insurance (SSDI) program.

To receive SSI benefits, your child must meet both the medical and financial/technical eligibility rules. Learn more about the income and other financial resource limitations of SSI here:

Compassionate Allowances

Sanfilippo Syndrome is included in the SSA’s Compassionate Allowances (CAL) program, which ensures applications are reviewed as quickly as possible and those applicants have a decision on eligibility within just a few weeks.
The average SSD application takes several months to go through the initial review process. CAL applications require minimal medical evidence and proceed through a rapid review process. This means you will likely have a decision on your child’s claim in less than a month.

Applying for Benefits

As SSI is a need-based program that also requires your child medically qualifies as disabled, the SSA needs to see financial documentation as well as medical records. You will need to provide information on both at the time you apply and the specific information that will be necessary is detailed within the Child Disability Application checklist and the Child Disability Starter Kit.

To apply for benefits for a minor child, an in-person interview if required. The interview will take place at the local SSA office and can be arranged by calling 1-800-772-1213.

Evidence Required

While the CAL designation of your child’s Sanfilippo Syndrome means minimal evidence is necessary to document disability, as the SSA recognizes the inherently disabling nature of this genetic disorder, you must still provide the correct evidence to satisfy eligibility requirements. Specifically, the SSA needs to see:

  • A clinical exam and history report that describes the features of your child’s medical condition and supports the diagnosis of Sanfilippo Syndrome
  • Lab test results that support the diagnosis, which may include any or all of the following:
    • Enzyme studies
    • Imaging scans, including MRIs and/or CTs
    • Urinalysis tests
    • Genetic evaluations