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Huntington’s Disease Can Be Fast Tracked, But…

Published on May 1st, 2019

Huntington’s disease is a genetic inheritance disease of the brain that results in the degeneration of the brain’s neurons. This disease causes uncontrolled movements, mood swings and the loss of cognitive abilities. There is currently no cure for Huntington’s disease, but medications can help manage the emotional and physical symptoms.

Under Social Security’s regulations, people diagnosed with Huntington’s may be eligible for a Compassionate Allowance decision. The clinical presentation that should be documented may include changes in personality, behavior, cognition, speech and coordination. It is expected that concentration becomes increasingly impaired as the disease progresses. To have the Compassionate Allowance approved, the medical charts will need to document the progressive symptoms, an abnormal neurological exam and a laboratory test showing abnormalities consistent with the diagnosis. Being approved as a Compassionate Allowance eliminates a lot of delays, paperwork and stress.
If for some reason a Compassionate Allowance approval is denied, the claimant can still pursue benefits with the traditional application.

We have seen issues where claims are challenged by Social Security because the onset of the symptoms are so subtle. Often patients either do not realize the symptoms, or are in denial of them. Impairments in concentration and mood swings are often hard to document in traditional medical settings.
Day to day symptoms can be more easily tracked with use of a calendar. We suggest the calendar be used as a diary and completed at the end of the day. The notes can then be brought to the doctors’ visits so that symptoms can be more accurately reported. Often family members see these symptoms more clearly than the patient.

If the Compassionate Allowance is denied the application will be reviewed under Social Security Listing 11.17 for Neurodegenerative Disorders. This was made far more challenging in the last update to the neurological listings. To satisfy this Listing, a patient must be able to document either: An extreme limitation in rising from a seat, balancing or using upper extremities. This means use of a walker, two crutches or two canes; or, A Marked limitation in one rising from a seat, balancing or using two extremities (one cane, one crutch), along with a marked mental impairment in:
Understanding, remembering or applying information;
Interacting with others;

Concentrating, persisting or maintaining pace; or,
Adapting or managing oneself.

With those severe standards it is far better to try for the Compassionate Allowance approval.

This is a progressive condition that, right now, cannot be cured. As soon as work has become impossible because of the symptoms there should be a discussion as to the advisability of filing for Social Security disability assistance.

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