Compassionate Allowance - Coffin-Lowry Syndrome

Males who have this rare genetic disorder typically experience more pronounced and severe symptoms, while females may have mild to severe effects from Coffin-Lowry Syndrome (CLS). Whether severe or mild, Coffin-Lowry can qualify a child or an adult for Social Security Disability (SSD) benefits.

Applications filed for the more severe forms of the syndrome are earmarked for rapid review and approval through the Social Security Administration's (SSA's) Compassionate Allowances (CAL) program, while all other applications based on the diagnosis are processed instead through the standard disability claims procedures.

Compassionate Allowances

The most severe cases of Coffin-Lowry qualify for expedited review under the CAL program. This doesn't eliminate:

  • the need for completing the full application
  • OR

  • supporting your claim with thorough medical records.

What CAL-designation does however is:

  • minimize the evidence necessary for proving disability
  • AND

  • shorten the wait for a decision on the claim.

The average disability claim takes several months to go through the first review and may even then be denied. CAL conditions are rarely denied benefits and you will likely have a decision in just a few weeks.

Required Medical Evidence for Coffin-Lowry Syndrome

The minimum evidence required for CAL review includes:

  • A thorough clinical history, with exam notes that describe the full involvement of the condition, including physical features, structural abnormalities, and any organs affected.
  • Genetic test results showing the mutation in the genes responsible for CLS.
  • Psychological tests and development assessments documenting developmental delays and intellectual deficits.

These same items are essential for a claim filed for less severe CLS that is reviewed under the SSA's standard procedures rather than expedited through the CAL program. Additionally, SSA disability determinations staff may consult the listings in 12.05, 112.05, and 110.08 of the Blue Book, which is a manual of impairments and the evidence necessary for proving disability with each.

You can find the Blue Book; however, even in most non-CAL Coffin-Lowry cases, the evidence listed above is sufficient for proving the claim.

Submitting an Application

  • If you are applying for benefits for a minor child or submitting an application for SSI, you must do so in person, via a personal interview with an SSA representative. This is typically completed at the local SSA office and can be arranged by calling 1-800-772-1213.
  • If you are applying for SSDI benefits, the application can be filled out and submitting online, via the SSA's website, though you will still need to follow up with the local office to provide them copies of medical records and other supporting documentation.

While it is unlikely a Coffin-Lawry Syndrome claim for disability benefits will be denied based on medical reasons, it is still possible. Consulting with a Social Security advocate or attorney before filing your claim can be helpful. Their assistance can be invaluable if you do receive a denial notice and need to file an appeal.