Jervell and Lange-Nielsen Syndrome (JLNS) is a congenital disorder the results in severe and progressive hearing loss and heart function compromise. This genetic disorder is so severely limiting that it is automatically medically qualified for Social Security Disability (SSD) benefits. It is typically detected in early childhood, but can be detected in adolescence and much more rarely, in adulthood.
Compassionate Allowances and JLNS
JLNS is included in the Social Security Administration’s (SSA’s) Compassionate Allowances (CAL) program, which is a fast-track disability review process that is intended to get benefits to those who need them most in a more timely manner. Applications for JLNS are reviewed more quickly and typically approved without incident or delay, provided they have the appropriate documentation and medical evidence accompanying them.
Medical Evidence and JLNS
There are two genetic tests that can prove the existence of JLNS beyond a doubt. These tests either show a mutation in the KCNQ1 or the KCNE1 gene. Even without these tests however, there are tests that prove the diagnosis of JLNS. These include:
- Audiometric and otologic equations documenting hearing loss or congenital deafness
- Heart evaluations, including an ECG to determine the duration of the delay in the electrical signals in the heart muscles
Additionally, the SSA needs to see a thorough clinical history which documents the presence of symptoms consistent with JLNS and reports of physical findings that also support the diagnosis of JLNS.
The clinical history report and physical findings documentation in your child’s application for disability benefits must also report the medications and other treatments your child has received and the effects of those therapies of intervention methods on his or her symptoms.
It is important to note the audiometric and otologic exams required for proving the severity of hearing loss must be completed within two months of one another. The audiometric test is typically performed first.
Medical Listings and Severity Level
In addition to the SSA being able to document the diagnosis of your child’s JLNS, they must also be able to substantiate the severity level of the condition in order to meet the medical eligibility requirements for SSD benefits.
The SSA typically uses listing in the Blue Book to compare applicant medical records to. In the case of JLNS, the SSA may use several listings:
- Section 2.10 and 2.11 and 102.10 and 102.11 – Adult and child listings for hearing loss
- Section 4.05 and 104.05 – Adult and child listing for recurrent arrhythmias
Applying for Disability
Applications for disability benefits that are filed on behalf of a minor child must be completed in person at your local SSA office. They are also done via an interview process with an SSA representative. Be sure to schedule your appointment in advance to avoid delays, and also ensure you collect as many of your child’s medical records as possible before the interview date rolls around. Those records should be submitted along with your son or daughter’s application.