Compassionate Allowance - Classic or Infantile Onset Menkes Disease

The Classic or Infantile Onset form of Menkes Disease is approved for rapid review under the Social Security Administration’s (SSA’s) Compassionate Allowances (CAL) program and is “automatically” medically approved for disability benefits. That being said, you must still apply for benefits, provide the SSA medical evidence, and meet the technical/financial criteria in order for your child to receive Social Security Disability (SSD) benefits.

The CAL Program

CAL is a program that is intended to get benefits to those who need them most in as rapid a manner as possible. It ensures applications filed on a CAL designated condition are expedited through the review process.

Rather than waiting four or more months for a decision on your child’s application for SSD, you will have a decision in a matter of weeks and Menkes Disease, in the infantile onset or classic form, is essentially guaranteed to meet the SSA’s medical eligibility requirements, provided you have the appropriate documentation to prove the diagnosis and the severity level of the condition.

The SSA must see certain documentation in your child’s medical records to support the definitive diagnosis of Menkes Disease, classic or infantile onset form, and to substantiate the severity level of your child’s condition.

To prove the diagnosis, the SSA typically needs to see:

  • Blood tests showing low copper and ceruloplasma levels
  • Biopsy results and cultures that document abnormalities in metabolizing copper
  • Menkes abnormalities in the results from hair after examination under an electron microscope
  • Genetic test results showing mutations in the ATP7A gene.

To substantiate the severity level, the following evidence is also required:

  • Clinical history and exam notes that describe the onset of the disease and the features of the illness.
  • CT and/or MRI results showing complications from the disease. These may include:
    • Nerve lesions or atrophy
    • Ruptures or blockages in the arteries
    • Psychological and intellectual exams that document the presence of any developmental or cognitive delays or impairments.

The SSA may also review the listing in the Blue Book for catastrophic congenital disorders that affect multiple body systems, which appears in section 110.08.

Disability Programs from the SSA

Children may, under some circumstances, qualify for survivor benefits under the Social Security Disability Insurance (SSDI) program; however, it is usually the Supplemental Security Income (SSI) program through which minors receive disability benefits.

SSI is a need-based program and as such requires that your son or daughter has very limited income and other resources or assets available with which to pay for everyday needs. Your child’s finances and your own financial data will both be taken into account when determining if he or she is eligible to receive SSI.

Applying for Benefits

Applications for SSD benefits for children must be competed through an in-person interview at the local SSA office. You will need to schedule an interview date in advance and go to the interview prepared to provide the SSA all the required information, in order to avoid delays in the review of your claim. The information you need includes thorough medical records as well as financial data and any school related information, if applicable.