Nonketotic Hyperglycinemia (NKH) is a genetic disorder present at birth and the Social Security Administration (SSA) understands its inherently debilitating nature. Given this, NKH is included in the SSA’s Compassionate Allowances (CAL) program, which ensures applications filed with the diagnosis of NKH are reviewed as quickly as possible.
It is typically Supplemental Security Income (SSI) for which disabled children qualify for disability benefits. The program is need-based, which means there is a financial component to eligibility. In order for the SSA to find your son or daughter eligible, you must have very limited income and other financial resources or assets.
CAL designation for NKH means your child’s application for benefits will be reviewed more quickly and that you should have a decision on eligibility within just a few weeks. It does not however mean that you do not have to go through the standard application and review processes. You will still need to apply for benefits Social Security Disability (SSD) on behalf of your child. You must also still ensure your child’s medical records contain the appropriate documentation for meeting the SSA’s evidence requirements.
Proving the NKH diagnosis is the first piece of information the SSA must confirm. This can be achieved through:
- Enzyme analysis
- DNA analysis
- Lab test results that show high plasma levels
- Urine glycine concentration results that are elevated
- Elevated glycine concentrations in cerebral spinal fluid (CFS)
The SSA also needs to see physical findings and clinical history information that support the diagnosis and document the severity of your son or daughter’s symptoms.
Treatment for NKH is also symptom-specific, which means the SSA needs to see details of the symptoms and the treatments your child is undergoing as well as the effects of those treatments.
The minimum information that the SSA must see in your child’s records in order to find him or her medically eligible for SSD benefits includes:
- Glycine concentrations in blood work and CFS test results
- AMT and GLDC gene mutations documented through molecular genetic testing
- Severity level of seizures, if your child experiences them
- Developmental delays or intellectual deficits, documented through age-appropriate evaluations
Applying for Benefits
Because you are applying for benefits on behalf of a minor child, you will need to apply in person at your local SSA office rather than online via the SSA’s website. You should additionally understand that in-person applications are completed through a personal interview, with an SSA representative filling out the documents for you and collecting the necessary details from you.
You should collect as many of the necessary records as possible before your interview date. Provide copies of your child’s medical records and school records, if applicable, to the SSA representative at the time you apply. You will also need your financial information and any financial records.
Following the submission of your application, you will wait at least a couple of weeks for a decision. Applications file on most CAL designated conditions receive a decision within four weeks.
It is very unusual for the SSA to deny a CAL claim, but they may request additional information from you, if your child’s records are lacking in some way. This makes it that much more crucial that you go to the appointment prepared to provide the SSA all the essential details of your child’s Nonketotic Hyperglycinemia and the limitations it imposes on his or her everyday life.