Compassionate Allowances - Dravet Syndrome

Dravet Syndrome is a rare and severe form of genetic epileptic encephalopathy that begins to present with symptoms before the age of one. Children with this condition experience progressively worsening and multiple types of seizures and generally have underdeveloped motor skills and language abilities. They also commonly experience behavioral problems and have difficulty relating to others, in a manner quite similar to autistic children.

As a rare and severe genetic disorder that progressively worsens with time, Dravet Syndrome is a part of the Social Security Administration’s (SSA’s) Compassionate Allowances (CAL) program, which means disability applications filed for the condition are reviewed more quickly and are rarely denied.

CAL Designation and Medical Documentation

Although Dravet Syndrome is a CAL designated condition, you must still fill out an application for Social Security Disability (SSD) benefits and must also thoroughly document, through appropriate medical records, the diagnosis, treatment, and effects of the condition on your child’s everyday life and abilities.

The SSA requires specific medical evidence is present in your child’s records, including:

  • Genetic testing results that show the presence of mutations in the SCNIA gene
  • Lab test results ruling out other causes for the gene mutation and for the seizures
  • EEG results showing abnormalities in brain function
  • Notes of findings from physical examinations, documenting the physical signs of the condition and of seizures, including: tremors, abnormal eye movements, uncontrolled muscle movements, lack of muscle control in the face, mouth, or voluntary muscles responsible for respiration
  • IQ test results or other documentation of intellectual deficits
  • Treatment protocols, including medications and their effects
  • Records of supportive care requirements
  • Hospitalization and emergency intervention documentation
  • Doctor’s notes reporting the physical and cognitive features of the disorder
  • Imaging test results showing any changes in the brain, including PET, MRI, and/or CT scans

Meeting or Matching a listing in the SSA’s Blue Book

Though Dravet Syndrome “automatically” meets the SSA’s medical eligibility rules for SSD benefits, the severity level of the condition must still be proven through thorough medical evidence and other details in your application. To evaluate the severity level of the condition, the SSA uses the following listings in the Blue Book:

Applying for Benefits

Whether applying for benefits on behalf of a minor child with Dravet Syndrome or for an adult with the disorder, you will need to complete the full application process.

For children, an in-person interview at the local SSA office is required. For adults however, you can complete the application online or at the local office. However, you must still ensure that you submit thorough medical records supporting the claim.

If applying in person, be sure to schedule the appointment in advance and to collect as much documentation as possible prior to the appointment.

The initial review of an application usually takes at least four months, but as Dravet Syndrome is a CAL condition, you should anticipate having a decision from the SSA within just a few weeks.

While it is unlikely that the claim would be denied for medical reasons, it is possible. If you receive a denial, you can appeal the decision and having the help of a Social Security advocate or attorney can aid in your efforts.