Compassionate Allowance - Giant Axonal Neuropathy

As a rare, progressive, and ultimately terminal genetic disorder that typically presents in early childhood, Giant Axonal Neuropathy (GAN) is a condition the Social Security Administration (SSA) recognizes as automatically qualified for Social Security Disability (SSD) benefits.

Disability Benefit Programs

Though children can qualify for benefits under the work history of a deceased or disabled parent and can therefore receive Social Security Disability Insurance (SSDI) benefits under certain circumstances, more often than not, it’s the Supplemental Security Income (SSI) program under which children qualify for SSD.

This is because SSI has no work credit requirements. It is designed to pay benefits to any qualifying individual, or any age, including children. SSI is however a need-based program, which means there are financial eligibility rules that must be met in addition to medical criteria.

Specifically, children and their parents or legal guardians must have very limited income and other financial resources available on a monthly basis for paying for their everyday needs and ongoing care. That being said, the SSA only counts certain types of income/resources and even then, only “deems” a portion of them to the child, which essentially means only a percentage is considered available for providing for the child’s needs.

The calculation of countable income/resources is somewhat complex. The only way to know for sure if your child qualifies is to apply for benefits.

Compassionate Allowances

The SSA designates GAN as a Compassionate Allowance (CAL), which means any application filed for the condition is reviewed more quickly and approved with minimal supporting documentation.

CAL designation does not prevent you from having to apply, nor does it get rid of all the documentation requirements for supporting the claim. It simply speeds up the process and limits the need for the extensive medical records and other documentation the SSA typically requires.

Rather than waiting months for a decision, your child’s claim will be reviewed in just a few weeks, and instead of piles and piles of medical records, the SSA requires just a few key pieces.

Required Medical Evidence for Giant Axonal Neuropathy

The essential records the SSA requires include:

  • A thorough medical history and notes from examinations, including descriptions of the features of the disorder, symptoms present, progression of symptoms, and the prognosis.
  • Lab test results documenting the formal diagnosis.
  • Psychological, intellectual, and developmental assessment results, documenting cognitive and intellectual limitations and decline.

The SSA may also review listings within the Blue Book, which is a manual of impairments used for evaluating disability claims:

  • Part A – Section 11.17
  • Part B – Sections 111.02, 111.03, and 111.06

Submitting an Application

Although it will take some time to collect the required medical evidence and complete the SSI application, filing an application can get your child the additional support he or she needs. It is important to understand that SSI applications much be completed in person and this is typically done as an interview at your local SSA office. You can schedule your appointment by calling 1-800-772-1213.

Remember to take copies of your medical records to submit along with the application. This will speed up the review process. Remember also that SSI is a need-based program, which means the SSA requires copies of financial records as well. The Child Disability Starter Kit can help you determine what financial and other documents you will need.