NFU-1 Mitochondrial Disease is an inherited disorder, caused by a mutation in the NFU1 gene. As such, the SSA understands that it has systemic affects that are debilitating. It is included in the Compassionate Allowances (CAL) program, which guarantees the Social Security Administration (SSA) reviews applications filed on the diagnosis more quickly. Rather than waiting months for a decision, your child’s application will be processed within just a few weeks.
Compassionate Allowance Designation
While CAL designation ensures your child’s application is reviewed quickly, it does not remove all of the evidence or other requirements for application. In other words, you must still present the right medical records and complete the full application process in order for your child to be found medically eligible for Social Security Disability (SSD) benefits.
Medical Evidence
The amount of medical evidence necessary to substantiate the definitive diagnosis and document the progression of the disease is minimal:
- Enzyme analysis or genetic chromosome tests, documenting the diagnosis
- Lactic acidosis, documented through urine or blood tests
- Carnitine and amino acid analysis, documenting hyperglycemia
In addition to these key pieces of evidence, the SSA also needs to see physical findings and a clinical history that documents the signs and features of NFU-1 mitochondrial disease.
Supplemental Security Income Benefits
Children typically qualify for disability benefits through the Supplemental Security Income (SSI) program. NFU-1 meets the medical criteria for eligibility, but there are also financial limitations that are part of the basic eligibility rules for SSI.
Preparing to Apply
To apply for benefits on behalf of a child, you must complete an interview with an SSA representative. Interviews are most commonly held at the local SSA office. You must schedule your appointment in advance.
You will also want to go to the interview as prepared as possible. This includes collecting all of your financial data and your child’s medical records. The more information you are able to provide at the interview, the shorter your wait for a decision will be, as the SSA will not need to collect more documentation before making a determination on your child’s application for benefits.
Submitting an Application and What to Expect
When it is time to apply for benefits, you should call 1-800-772-1213 to schedule your appointment. Do not put off scheduling the appointment to collect the required evidence. Instead, use the time between scheduling and when appointment arrives to build your documentation. Even if you have been unable to collect all of the necessary records before your appointment date rolls around, keep the appointment anyway. Canceling, rescheduling, or failing to attend will result in further delays.
