Compassionate Allowances - Fryns Syndrome

As a rare genetic disorder that is usually fatal in early infancy, and which causes severe physical and intellectual impairments in those children who do survive, Fryns Syndrome automatically qualifies for Social Security Disability (SSD) benefits. You must however still submit an application and provide the Social Security Administration (SSA) with appropriate medical documentation.

Supplemental Security Income

Children most often qualify for disability benefits through the SSA’s Supplemental Security Income (SSI) program. This is a need-based program that sets strict income and other financial resource limitations as part of its basic eligibility criteria. Since you are responsible for providing for your child, a portion of your income and resources will also be considered when the SSA determines whether or not your son or daughter meets the SSI financial rules for eligibility.

Compassionate Allowances

Fryns Syndrome is part of the SSA’s Compassionate Allowances (CAL) program. CAL designation expedites claims filed for certain conditions in order to get benefits to those who need them most in the timeliest manner possible. Although CAL designed conditions are known disabilities and therefore automatically medically qualified for benefits, you must still support your son or daughters claim with the right medical records to avoid any delays in the process.

Medical Evidence and Required Documentation

The SSA is obligated to document key criteria for every application approved for benefits. This means there are certain pieces of information they must be able to verify before they can approve any claim, even those filed on CAL designated conditions like Fryns Syndrome.

The minimum evidence that your child’s application and medical records must contain includes:

  • A thorough clinical history that documents signs and symptoms consistent with the diagnosis of Fryns Syndrome , as there is no genetic test for making the diagnosis
  • Heart, lung, and kidney function tests to document any impairment in these body systems
  • In older children, intellectual and psychological testing is required

The specific tests that the SSA typically wants to see include:

  • Chest and abdominal x-rays
  • Ultrasounds of the cranium
  • Echocardiogram results
  • An ultrasound of the kidneys

The report of physical findings may include any or all of the following, based on the signs present in your child:

  • A hernia in the diaphragm at birth that required emergency surgery
  • The facial features characteristic of infants with Fryns Syndrome
  • Kidney dysplasia
  • Cloudy corneas
  • An underdeveloped heart
  • Underdeveloped fingers and toes
  • Brain abnormities
  • Abnormalities in the urinary and/or gastrointestinal systems

Applying for Benefits

While it is unusual that CAL conditions are denied for medical reasons, it is possible for CAL claims to be delayed due to a lack of sufficient medical records. Keep this in mind when preparing to file for disability benefits for your son or daughter. Collect as many records as you can prior to starting the application.

When applying for benefits for a minor child, you must schedule an appointment and complete the application via an interview at your local SSA office.