SSA Disability Neurodegeneration with Brain Iron Accumulation

As a rare genetic disorder, Neurodegeneration with Brain Iron Accumulation (NBIA) is among the conditions the Social Security Administration (SSA) recognizes as automatically meeting the medical criteria to receive disability benefits. This ensures your child’s application Social Security Disability (SSD) benefits will be reviewed more quickly, but it does not mean automatic approval. You must still complete the application and provide the SSA with the appropriate medical records to satisfy evidentiary requirements.

Supplemental Security Income Benefits

The Supplemental Security Income (SSI) program is that under which children most commonly qualify for SSD. SSI is a need-based program, which means there are financial eligibility criteria as well as medical eligibility rules. If your child suffer from type 1 or 2 NBIA, then he or she meets the medical criteria for benefits, but the SSA will also need to review medical records as well as financial data to determine if your child is eligible to receive SSI.

When you apply for benefits for your son or daughter, you must meet with an SSA representative for an in-person interview. The representative will use the information you provide to fill out your child’s application during that interview. You must have an appointment to fill out your child’s application and you can schedule that appointment by calling 1-800-772-1213.

Compassionate Allowances

NBIA is included in the SSA’s Compassionate Allowances (CAL) program. CAL designation expedites the review and approval of disability applications filed for certain conditions. It does not however eliminate the need for medical evidence in your son or daughter’s application, but it will get you an eligibility decision more quickly. Most disability applications take at least four months for a decision, but you should have a decision on your child’s application in just a few weeks thanks to the CAL program.

Medical Evidence Required

Genetic tests exist for NBIA but they are not widely accessible nor are they affordable for most parents. Instead, NBIA is usually diagnosed through neurological testing and clinical evaluation. The SSA knows the disease is severely disabling and progressive, and that the diagnosis of the disease is usually made without genetic testing. Other evidence is therefore needed to prove the diagnosis. That evidence includes:

  • Physical findings and a family and clinical history that show the cluster of symptoms consistent with NBIA.
  • Neurological examination findings that support the diagnosis and to rule out other conditions that cause similar symptoms.
  • Imaging exam findings that accomplish the same, including specifically MRI results.

Preparing for the Interview

While it is virtually guaranteed that a CAL designated condition like Neurodegeneration with Brain Iron Accumulation, Type 1 and 2 will be found medically eligible for benefits, your child’s medical records must contain the appropriate evidence in order to avoid delays in the process.

To ensure your application is reviewed as quickly as possible, collect as many of your child’s medical records as possible before the interview and submit those copies to the SSA at the time that you apply. The same is true for providing accurate and thorough financial data to the SSA during the interview as well.