Compassionate Allowance - Joubert Syndrome

Joubert syndrome is a genetic disorder that affects the area of the brain that controls coordination and balance. Individuals who are born with the condition suffer from an underdevelopment or complete absence of the cerebellar vermis and a malformed brain stem.

Symptoms of the condition commonly include lack of muscle control, abnormal breathing, sleep apnea, abnormal tongue movement, abnormal eye movement, seizures, and physical malformations such as cleft palate, extra fingers or toes, and tongue abnormalities. Mild and moderate retardation are also associated with the condition. Oftentimes individuals who are afflicted with Joubert syndrome are unable to maintain gainful employment. With no way to support themselves, the condition can quickly cause a significant financial burden. Fortunately, in many cases, Social Security disability benefits can help.

Qualifying for Social Security Disability with Joubert Syndrome

The majority of disability applicants pursuing Social Security Disability benefits will have to wait two to four months for their initial application for benefits to be approved of denied. The SSA has recognized, however, that some disability cases are so severe that waiting such an extensive period of time is unacceptable. As a result, they implemented the Compassionate Allowances program, allowing certain individuals to qualify for benefits in under two weeks. Joubert syndrome is one of the conditions that has been included in the SSA's Compassionate Allowances listings.

In order to qualify for benefits under the SSA's Compassionate Allowances program with Joubert syndrome, you will need to furnish evidence to the SSA that proves that your condition meets the Compassionate Allowances listing criteria. This means providing the SSA with copies of:

  • A diagnosis for JS that has been established by a combination of clinical examination and imaging studies of the midbrain and pons that resemble the characteristic molar tooth sign; and
  • Genetic testing for mutations including the NPHP1, CEP290, AHI1, TMEM67 (MKS3), RPGRIP1L, CC2D2A, ARL13B, INPP5E, OFD1, TMEM216, KIF7, TCTN1, TCTN2, TMEM237, CEP41, TMEM138, C5orf42, TMEM231, and TCTN3 genes; and
  • A clinical history and examination that describes the diagnostic features of the impairment; and
  • Laboratory findings needed to confirm the diagnosis; and
  • A developmental assessment or psychological testing to address any allegations of mental impairment.

How to Apply for Social Security Disability Benefits

You can apply for Social Security Disability benefits online or in person at your local Social Security office. When completing the disability application, you will be asked to fill out a number of forms. Make sure that you fill out each of these forms in its entirety, providing detailed answers to each and every question that is asked of you. The answers that you provide on these forms, along with your medical documentation, will help the adjudicator who is reviewing your case understand how you qualify for disability benefits under the SSA's Compassionate Allowances program.

In addition to filling out the necessary forms and providing medical documentation, you should also provide the SSA with financial documentation if you are applying for SSI benefits. These records should include bank statements and paycheck stubs along with proof of assets in order to show that you meet the SSA's financial eligibility criteria for the SSI program.

While it is rare for the SSA to deny claims that are based on a Compassionate Allowances listing, it has been known to happen. Such denials are usually due to improperly prepared applications or lack of supporting medical evidence. If your initial claim for benefits is denied, you may want to enlist the help of a disability attorney for purposes of an appeal. Statistics show that applicants who appeal a denial with the help of an attorney are more likely to be awarded benefits than applicants who try to represent themselves.