As the most severe form of a debilitating and rare genetic disorder, Usher Syndrome, Type I is automatically medically qualified for disability benefits from the Social Security Administration (SSA). Applications filed with this diagnosis are also processed more quickly and require a minimal amount of medical evidence to substantiate the claim for benefits. That being said, you must still complete the full application and provide the SSA with specific medical documentation.
The Compassionate Allowances (CAL) program is what allows Usher Syndrome, Type 1 applications to be processed so quickly. This program is designed to expedite claims filed for known, inherently disabling conditions, thereby ensuring you will have a decision on your child’s eligibility for Social Security Disability (SSD) benefits within just a few weeks rather than waiting several months for the application to be reviewed.
Children do not qualify for Social Security Disability Insurance (SSDI) benefits, as this program has a work history or work credit requirement that makes it only available to disabled workers that have paid Social Security taxes.
Minor children are however able to technically or financially qualify to receive disability benefits through the Supplemental Security Income (SSI) program, which is a need-based program that takes income and assets or financial resources into account when determining eligibility. Learn more about the income and other financial limits the SSA has set for SSI here:
The Application Process
When you apply for benefits for a child with Usher Syndrome, Type I, you must schedule an appointment for an interview at your local SSA office and can do so by calling 1-800-772-1213. The interview will be conducted by an SSA representative that will utilize the information you provide to complete your child’s application for benefits.
At the time you schedule your appointment, the SSA will send out a Child Disability Starter Kit. This kit gives you information on the SSI program and about the kinds of medical and financial documentation you will need in applying for benefits.
The SSA requires a minimal amount of medical evidence in reviewing CAL applications. For Usher Syndrome, Type I, that evidence must include:
- A complete medical history that includes physical exam and diagnostic test notes describing the physical features and symptoms of your child’s condition, supporting the definitive diagnosis of Usher Syndrome, Type I
- Otologic exam and audiometric test results, which must be conducted no earlier than two months prior to the application for benefits
- Eye exams and visual field and acuity tests that document changes in the structure and function of your child’s eyes, including a clear decline in visual perception
There is additionally a genetic test that is available to document Usher Syndrome, though the SSA does not require results of genetic testing for approval of benefits. Your child’s eligibility for SSI will likely be based on either hearing impairment of vision loss, and therefore a genetic evaluation may strengthen your claim for benefits but is not required for approval.