Compassionate Allowance - Hallervorden-Spatz Disease

As a rare genetic disorder, Hallervorden-Spatz disease is among the conditions the Social Security Administration (SSA) recognizes as automatically meeting the medical criteria for receiving disability benefits. This means that your child’s application for disability benefits will be reviewed more quickly, but it does not mean automatic approval for benefits. You must still complete the application process and ensure that there are appropriate medical records for satisfying the SSA’s evidentiary requirements.

Supplemental Security Income Benefits

Children typically receive benefits under the SSA’s Supplemental Security Income (SSI) program. Application for benefits on behalf of a minor child means the SSA must review:

  • your child’s medical records,
  • disability application,
  • and your financial records as well, because SSI is a need-based program.

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 fill out your child’s application during that interview, utilizing the information you provide.

Children’s disability applications are completed by appointment only. To schedule your appointment, you should call 1-800-772-1213.

Compassionate Allowances

Hallervorden-Spatz disease is a condition that 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. It is only intended to get you an eligibility decision more quickly. Most disability applications take at least four months for a decision to be made. CAL applications often get reviewed in just a few weeks.

Medical Evidence Required

There is a genetic test for Hallervorden-Spatz disease, and if you are able to have this test completed, it can significantly decrease the required medical evidence your child’s application for benefits must contain. This is because the SSA knows the disease is severely disabling and progressive in nature.

The genetic test however is not widely available, which means your child’s records may need to include other evidence to confirm the diagnosis.

Additionally, some cases of Hallervorden-Spatz disease are not caused by a mutation in a single gene, which means the PANK2 test that is often utilized to confirm the diagnosis may not prove your child has Hallervorden-Spatz disease.

These facts mean other evidence may be necessary to prove the diagnosis in your child’s disability application. Other required documentation may include:

  • Physical findings showing the cluster of symptoms consistent with the diagnosis
  • AND

  • Neurological exams and imaging tests to support physical findings and to rule out other conditions that cause similar symptoms.

What to Expect

Though applicants with Hallervorden-Spatz disease are rarely denied benefits, a lack of appropriate medical records or other details in your child’s application can delay the review and approval process.

Collect as many of your child’s records as possible before applying and submit those records when you do apply. This will get you a decision more quickly.