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Batten Disease and Supplemental Security Income (SSI)

According to the NINDS, (National Institute of Neurological Disorders and Strokes), “Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood.” This condition exhibits in early childhood due to an accumulation of lipopigments or fats and proteins in the body's tissues.

Often the first indication that a child has the condition is vision loss, and the condition is sometimes identified in an eye exam. If the eye doctor suspects Batten disease they can recommend that the child see a specialist for further testing such as a blood or urine tests, skin or tissue test, an electroencephalogram (EEG) or a brain scan.

Symptoms of Batten Disease


No treatment or cure is known for this condition but proper treatment can help control some of the symptoms such as seizures. Other treatments may extend the functionality of the child for a time, but unfortunately, eventually the child will suffer loss of motor skills, sight and mental impairment. Other symptoms of this condition can include:

  1. Seizures

  2. Loss of vision

  3. Behavioral changes

  4. Limited learning

  5. Inability to walk or stumbling

  6. Dementia


Winning Supplemental Security Income for Batten Disease


Supplemental Security Income is available to applicants of all ages who are blind or disabled. To qualify for SSI, however, applicants and their families must meet the resource and income threshold outlined by the Social Security Administration. This requirement is confusing to many applicants, but it means that if your family’s income and resource level is too high your child will not qualify for SSI, regardless of the severity of their condition.

Assuming your family meets the resource and income limitations, the SSA will review your child’s condition to determine if the child’s conditions are “marked and severe.” The Social Security Administration maintains a listing of conditions and symptoms they consider automatically disabling and this listing is called the SSA Listing of Impairments. There is both a child and adult listing so refer to the child’s listing for more information.

The Social Security Administration (SSA) also has another listing called the Compassionate Allowance List which lists conditions which the SSA considers disabling and which are eligible for expedited processing. Batten Disease is also on this listing.

Batten Disease and the Compassionate Allowance List


The Compassionate Allowance program was created to expedite the disability process for SSI and SSDI applicants who have a severe mental or physical health condition that obviously meet the SSA disability standards. Because Batten Disease is on this list your child’s SSI application should be flagged and processed more quickly than other SSI applications. This is great news for your family because processing can take as long as two years for some SSI applicants.

Assuming you have seen a medical doctor, have a diagnosis for your child, and have sufficient medical records to support the severity of your SSI claim, you should not need to hire a disability lawyer to win SSI benefits for Batten Disease.

If you are denied it could be because the resource and income limit was too high or you are lacking sufficient medical evidence to support your case.
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