Compassionate Allowance - Phelan-McDermid Syndrome

As a rare genetic disorder that can vary widely from one child to the next, Phelan-McDermid Syndrome always produces life-long complications. Many who suffer from it are unable to function independently and require life-long supportive care as well.

The Social Security Administration (SSA) understands the complexity of the disorder and the financial demands of providing appropriate care for an individual that suffers from it.

The inherently disabling nature of the disorder and the severe limitations it imposes have led the SSA to include the condition in its Compassionate Allowances (CAL) program, which ensures applications are reviewed more quickly.

The SSA's Disability Programs

The fact that Phelan-McDermid Syndrome is a CAL condition means you will have a decision on your child's claim within just a few weeks. Minors most often qualify under Supplemental Security Income (SSI), but there are technical eligibility rules that may affect your son or daughter's qualifications for benefits as well.

SSI is a need-based program and your child may or may not meet the strict income and other financial resource or asset limitations.

Although it is possible your child may qualify medically but not financially for SSI, the only way you will know for sure is to apply for benefits. Additionally, while your child may not immediately qualify, he or she may be eligible for SSD benefits if your financial circumstances change.

It is also important to understand that even if a minor child does not meet the technical eligibility rules for SSI, when he or she turns 18, circumstances change, and your child may then be able to receive benefits.

Compassionate Allowance - Phelan-McDermid Syndrome

Medical Evidence

Because Phelan-McDermid Syndrome produces varied signs and symptoms for each person affected, the treatment for the syndrome is symptom specific. In other words, your child's symptoms determine the treatment he or she will need. The type of daily support required also varies from patient to patient.

Details regarding these factors must be included in your child's medical records to show the SSA the extent of the syndrome's effects and the limitations it imposes on your son or daughter's abilities.

The SSA also needs to see specific medical records to make a determination on eligibility. Among these records are:

  • A thorough clinical history that describes the features of syndrome and the extent of your child's limitations
  • Age-appropriate psychological and/or developmental assessments to measure and document any intellectual or mental deficits that may be present.
  • Genetic testing documenting the deletion of the chromosome responsible for the syndrome, including one of the following:
  • Chromosome microarray analysis (CMA)
  • Fluorescent in situ hybridization (FISH)

Applying for Benefits

If you are applying for SSD benefits on behalf of a minor child, you must complete the disability application in your local SSA office. It will be filled out during the course of an in-person interview with an SSA staff member.

If however you are applying for benefits on behalf of an adult with Phelan-McDermid Syndrome, you can apply in the local SSA office or online, via the SSA's digital application process.
In either scenario though, you will need to provide the SSA with:

  • thorough medical records,
  • any school related documents, if appropriate,
  • and financial data related to the applicant.