Compassionate Allowance - Marshall-Smith Syndrome

As a very rare genetic disorder for which the exact cause is unknown and no effective treatment exists, Marshall-Smith Syndrome is medically eligible for Social Security Disability (SSD) benefits. As an inherently disabling condition, this syndrome also qualifies for rapid review through the Social Security Administration’s (SSA’s) Compassionate Allowances (CAL) program.

Disability Benefit Programs

While children can, under certain circumstances, qualify for disability benefits under the Social Security Disability Insurance (SSDI) program, Supplemental Security Income (SSI) is the usual program through which kids are able to receive SSD.

Children who do receive SSDI get benefits under the work record of a deceased or disabled parent or guardian, as SSDI is a program designed to pay benefits to disabled workers and in certain instances, their dependents.

SSI on the other hand has no work credit requirements, which is why kids are often able to qualify. It is however a need-based program, which means SSI has strict income/financial resource limitations that must be met before a child can receive benefits.

The SSA must review your financial situation in detail in order to make a determination on your child’s claim. Income and assets or other financial resources are considered during this review. Many children are able to qualify though, because the SSA:

  • Only considers some forms of income/resources as “countable”,
  • AND

  • Only “deems” a portion of those countable finances to the child, which simply means they understand that only a percentage of your income/resources are available to pay for your child’s everyday needs and ongoing care.

You can learn more about SSI financial thresholds here. The calculation for determining eligibility is somewhat complex though, which means applying for benefits is often the only way to know for certain if your child will be eligible for SSI benefits.

Compassionate Allowances

Many of the severe impairments that affect children qualify for consideration under the CAL program, which ensures applications for disability benefits are reviewed as quickly and efficiently as possible. Rather than waiting months for a decision, you have an answer on your child’s application in just a few weeks.

Although the process for CAL conditions is expedited, you must still complete the full application and you must provide the SSA with the appropriate medical evidence.

Required Medical Evidence for Marshall-Smith Syndrome

Minimal medical records are necessary for approval through the CAL program, but there are some key pieces of documentation. These include:

  • A thorough medical history describing the syndrome and its features
  • Genetic testing results showing the mutation in the NF1X gene
  • Imaging results documenting the bone development abnormalities characteristic of the syndrome

Although a decision on your child’s claim for benefits can be made with the previously mentioned documentation alone, disability determination staff may also review information in the SSA’s Blue Book, which is a manual of impairments used in the evaluation of disability claims. Marshall-Smith Syndrome qualifies for benefits under the Growth Impairment listing in Section 100.02.

Submitting an Application

When you apply for SSI, you must do so in person, via an interview with an SSA representative. You can schedule that appointment by calling 1-800-772-1213. You will need financial and medical records to complete the interview and application. The Child Disability Starter Kit helps you understand the records and other documentation you’ll need for the appointment.