MECP2 Duplication Syndrome is a condition the Social Security Administration (SSA) recognizes as qualified for Social Security Disability (SSD) benefits. As a rare genetic disorder that typically presents early in infancy and has severe developmental disability implications, MECP2 Duplication Syndrome is also included in the SSA’s Compassionate Allowances (CAL) program, which guarantees quicker processing of your child’s application for benefits.
CAL Designation
While CAL designation ensures your child’s application will be processed as quickly as possible and virtually guarantees approval as a medically qualified impairment, you must still file an application and present the appropriate medical records to the SSA. It is also important to understand that medically qualifying for benefits is only one aspect of your child’s eligibility. There are also technical or basic eligibility requirements for each of the SSA’s disability programs.
Medical Evidence Requirements
Your child’s medical records must contain certain key pieces of evidence in order for the SSA to find your child medically eligible for benefits. A definitive diagnosis must be proven through standard medical means. Evidence showing the severity level of your child’s MECP2 Duplication Syndrome symptoms must also be present in your child’s records.
Documenting a definitive diagnosis requires:
- Genetic tests that show the duplication of the Xq28 in the MECP2 chromosome
- Physical findings that record the presence of typical symptoms of the syndrome, including:
- Trouble eating or swallowing
- Gastroesophageal reflux
- A failure to thrive
- Abnormalities in muscle tone
- Mental and psychological and/or developmental assessments may also be included in your child’s medical records to document the presence of intellectual and physical developmental delays.
The presence of the duplicate gene is not enough to grant benefits. Cognitive and neurological changes must be documented within your child’s medical records in order for the SSA to find your child medically qualified for benefits.
The SSA may also review several listings within the Blue Book to support the determination of disability for applications filed on the basis of MECP2 Duplication Syndrome. These include:
- Section 111.06 – Motor dysfunction, due to any neurological disorder
- Section 111.07 – Cerebral Palsy
- Section 112.05 – Intellectual disability
SSD Benefit Programs
The SSA has two disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Children can sometimes qualify to receive SSDI as survivor benefits, but more often than not, it is SSI benefits for which they qualify.
It is important to understand that SSI is a need-based program. As such, it pays benefits to qualified disabled adults and children who have significant financial need. It has strict income and financial resource limitations.
Applying for Benefits
To apply for benefits on behalf of a minor child with MECP2 Duplication Syndrome, you must participate in an interview with an SSA representative. The interview will be conducted at your local SSA office and require you make an appointment in advance. You will need to provide your child’s medical history and as many records as possible at the interview. You will also need to give the SSA details on your financial situation. To make an appointment, call the SSA’s main helpline at 1-800-772-1213.
