As an exceptionally rare, inherently disabling, and often fatal syndrome, Hoyeaal-Hreidarsson Syndrome (HHS) automatically meets the Social Security Administration’s (SSA’s) basic eligibility rules for medically qualifying. It is however still necessary for you to apply for benefits and support your child’s claim with appropriate medical evidence.
Disability Benefit Programs
Under certain circumstances, children are able to receive disability benefits under the work history/work credits of a parent or league guardian, which means they can get Social Security Disability Insurance (SSDI) payments on a monthly basis. However, most kids instead receive SSI, or Supplemental Security Income, benefits.
SSI is a need-based program with strict financial limitations set for eligibility, but it doesn’t have any work history requirements, which makes it open to any disabled individual of any age that meets both the medical and financial eligibility rules.
Though the financial threshold for SSI is low, many children do qualify. This is because only a portion of your income/resources are “deemed to” or considered by the SSA to be available to pay for your child’s needs. Additionally, only some sources of income/resources “count” according to the SSA as well.
Many genetic disorders and diseases that affect children, including HHS, are included in the SSA’s Compassionate Allowances (CAL) program, which is designed to expedite the review and approval of applications filed for the most debilitating and inherently disabling conditions.
CAL designation does not get rid of the need to complete the application, nor does it eliminate the need for supporting medical records and other documentation. It does however speed up the process significantly and minimize the amount of evidence needed for the SSA to approve the claim.
Most CAL applications go through the initial review in just a few weeks, while the average disability application takes several months and even then is often denied.
Required Medical Evidence for Hoyeaal-Hreidarsson Syndrome
While CAL designation minimizes the medical evidence requirements for receiving disability benefits, it does not eliminate them entirely. Following are the key records the SSA must see in order to approve a claim:
- A detailed medical history and exam notes, describing the physical and other clinical features of the syndrome, including all body systems affected and the structural abnormalities present.
- Lab and genetic test results, confirming the diagnosis.
- Neuroimaging scan results, showing structural abnormalities in the brain.
While a decision can be made on these documents alone, the SSA may also review listing in the Blue Book, which is a manual of impairments used for evaluating disability claims.
Since HHS can affect many different areas of the body, the SSA may review any or all of the following listings:
- In Part A – Sections 7.02, 7.06, 7.10, 7.17, 11.07, 11.17
- In Part B – Section 111.06
Submitting an Application
As you are applying for SSI, you must complete and submit the application in person. A personal interview with an SSA representative is required and this is usually done at the local office. You must have an appointment, and can schedule that date by calling 1-800-772-1213.
Collect as many of the required records as possible before the appointment date arrives, but attend anyway, even if you do not have them all by that time. Delaying the appointment only delays your child’s claim.
The Child Disability Starter Kit will help you know what records and other documentation to take with you to the appointment.