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Juvenile Onset Huntington Disease and SSI

Juvenile Huntington disease (HD) is a condition which develops in young children or juveniles due to a genetic, uncontrolled mutation in the coding region of the IT15gene, causing generation of an abnormal protein which can impair the job of the  nerve cells.

[caption id="" align="alignright" width="300" caption="Huntington's Disease (Photo credit: Wikipedia)"]English: Huntington's Disease: Autopsy case, i...[/caption]

This condition is generally inherited from the child’s father and it is a severe disorder which can lead to severe symptoms including:

  1. Cognitive issues

  2. Uncontrolled movements

  3. Seizures

  4. Hostility

  5. Difficulty walking

  6. Loss of speech

  7. Loss of balance

  8. Lack of energy

  9. Delusions

  10. Paranoia


Severe and disruptive symptoms can lead to the inability of the applicant to make decisions and care for themselves, which may disrupt their ability to perform activities of daily living. There is no cure for the disease, but early intervention can help regulate some of the symptoms.

Supplemental Security Income (SSI) and Juvenile Huntington disease


Huntington disease generally develops in adults ages 30 to 40, although Juvenile Huntington disease can manifest in childhood or adolescence. If one of your parents has the condition you have a 50% probability of contracting the disease as well.

Supplemental Security Income or SSI is a wage replacement program administered by the Social Security Administration (SSA) to provide monthly cash assistance to the disabled, blind or aged (65 years or older) who have limited income and resources but who are not able to work due to a severe mental or physical health disorders. SSI has also been extended to children of all ages who are born or who develop a severe disorder and whose condition is expected to last for at least 12 continuous months and is considered “marked and severe,” and many applicants who have children with this condition are curious if their child will qualify for SSI benefits.

Conditional Allowance Program and Juvenile Huntington Disease


The Social Security Administration has several methods of determining if a claimant is disabled and may qualify for Supplemental Security Income (SSI). For adults, the SSA will review if their condition “meets or exceeds” a listing on the SSA listing of impairments or if the applicant has the residual capacity to work (this determination is done through a medical vocational allowance).

Since a child is generally not employed, the SSA will simply review their condition and determine if it meets or exceeds a listing in the SSA Listing of Impairments – Part B for children.

In addition to the options identified above, the SSA also has created a list called the Compassionate Allowance list (CAL). Beginning August 13, 2012, the SSA will add an additional 52 conditions to the Compassionate Allowance List bringing the total number of CAL conditions to 165.

Juvenile Onset Huntington disease is currently on the Compassionate Allowance list, and if your child is diagnosed with this condition, assuming your family meets the income and resource limitations of the SSI program, they should be automatically approved for disability benefits.

Why was my child denied SSI for Juvenile Huntington Disease?


SSI is only for those who have very limited income and resources. If your child has been denied SSI benefits for Juvenile Huntington disease it was most likely because your family’s income and resource level is too high.  The second reason could be that your child lacks sufficient medical evidence to prove they have this condition. Talk to a disability lawyer if you have questions about your SSI denial.
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