Social Security Disability Benefits for Zellweger Disease

Children born with Zellweger disease to low-income families are guaranteed SSI benefits.

Zellweger syndrome (ZS) is a rare genetic disorder that affects infants. Social Security recognizes the severity of Zellweger Syndrome, and has approved a streamlined disability application process for individuals with ZS. If your child has Zellweger, and your household has limited income, you should apply for SSI for your child. You will be granted a monthly SSI check to help with expenses for your infant.

Zellweger syndrome is a genetic disorder that is inherited from both parents. It can cause a variety of symptoms in infants, including impaired hearing, seizures, an enlarged liver, skeletal abnormalities like clubbed feet, muscle problems that may cause difficulty eating, and vision problems including blindness. ZS is the most severe of the three peroxisome biogenesis disorders (PBDs). The other two disorders are neonatal adrenoleukodystrophy and infantile Refsum disease. 

Getting Disability Benefits

In general, Social Security awards SSI to children whose conditions impose “marked and severe” limitations in their daily lives and whose conditions have lasted or will last at least a year or will result in death. Social Security has a list of conditions that it has decided will qualify a child for SSI. Social Security considers ZS to meet listing 110.08A, catastrophic congenital abnormality or disease.

In addition, Social Security has identified a list of approximately 200 conditions in its “Compassionate Allowances” (CAL) program, for which it will expedite applications to award SSI more quickly. ZS is one of the conditions on the CAL list.

How Compassionate Allowances Work

To get SSI in a CAL case, you must still show Social Security objective medical evidence that your child has the condition on the list. However, Social Security will require less medical evidence than in an ordinary SSI case and will process the application much more quickly.

Usually, Social Security will not tell you that your case has been identified as a CAL case unless you specifically ask. However, the agency will treat your application differently from the start. For example, Disability Determination Services (DDS) is required to begin work on a CAL case within one day of receiving the application from the Social Security field office. The claims examiners who work on CAL cases are supposed to be more experienced. In a CAL case, the claims examiner will try calling or faxing your child's doctor to get the evidence needed to prove the disabling condition, and will follow up quickly with them if they do not respond.

Once the claims examiner thinks that there is enough medical evidence to show that your child’s case meets a listing, DDS will forward the file to a staff pediatrician to review the decision.

Objective Medical Evidence of Zellweger Syndrome

Social Security considers ZS to be characterized by an abnormality of one particular gene, called the PEX1 gene. Blood tests in children with ZS will show accumulation of very long chain fatty acids levels, and genetic testing will usually show mutations in the PEX1 gene. When Social Security is evaluating your child’s SSI application, it will look for objective medical evidence of ZS in these tests.

If blood and genetic tests show the presence of one of the PBDs, then Social Security will want to see a complete physical and neurological exam to confirm that the child has ZS, and not one of the other two, less serious, PBDs.

Getting Help

Call the Social Security Administration (SSA) at 800-772-1213 to start a disability claim for your child. SSA does not pay retroactive benefits for SSI, so the sooner you apply, the more months of SSI you'll get.

If you have a child with ZS and your family meets the income qualifications for SSI, but you have a problem getting Social Security to quickly approve benefits for your child, you should consult a disability attorney.

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