Compassionate Allowance - Roberts Syndrome

If your child has Roberts Syndrome, then he or she is medically qualified for Social Security Disability (SSD) benefits through the Supplemental Security Income (SSI) program. However, your child must also meet the technical eligibility rules in order to receive SSI benefits. Additionally, appropriate medical evidence must be submitted to the SSA, along with the standard application for SSD benefits, before your child can be approved for benefits.

SSI Benefits and Children

Disability benefits for children are almost always paid through SSI. Your son or daughter must meet the medical eligibility rules, but must also qualify financially to receive benefits as well. SSI is a need-based program, which means your child must have limited income and other financial sources available to pay for his or her everyday needs in order to get SSI benefits.

Expedited Review as a Compassionate Allowance

Roberts Syndrome is among the conditions the SSA has approved for expedited review as part of the Compassionate Allowances (CAL) program. Rather than waiting four or more months for a decision on your child’s claim, you will know if benefits are granted within just a few weeks.

The CAL program ensures you will have an answer as soon as possible, but you must still meet the SSA’s medical evidence requirements in order to prevent delays in processing. If any required information is missing, the SSA will request more details before your child’s application can be approved.

Medical Evidence Needed

The effects of Roberts Syndrome vary from one child to the next, but the SSA needs to see all of the clinical findings related to your child’s signs and symptoms. The complications your child experiences will determine what evidence the SSA needs to see. That evidence may include any or all of the following:

  • Detailed descriptions and clinical features of the birth defects and malformations present
  • Heart, bladder, kidney, and lung function tests
  • Imaging exams to show organ formation abnormalities
  • Genetic testing to show mutation in the ESCO2 gene
  • Intelligence and/or psychological evaluations to document development or intellectual deficits

The SSA maintains a manual known as the Blue Book which contains listings of medical conditions. There is no specific listing for Roberts Syndrome, but there are several listings the SSA may review when looking at your son or daughter’s medical records:

  • Sections 1.02A or B or 101.02A or B – for joint contractures
  • Section 100.02 – growth impairments
  • Section 1.05 or 101.05 – for malformations of the hands, feet, arms, or legs

Applying for Benefits

To apply for disability benefits on behalf of your son or daughter, you must complete an interview with the SSA. This is usually done at your local SSA office, and you will need to make an appointment in order to avoid delays.

Be sure to take along your child’s medical records and your financial data. You will need all that information when filling out the application. You will also want to provide the SSA copies of these documents.