In the United States, approximately 30,000 people suffer from Huntington’s Disease, and another 200,000 are at risk for developing it. Huntington’s is a genetic degenerative disorder that affects the brain and leads, in time, to cognitive decline, decreased coordination, and psychiatric problems.
Symptoms become noticeable by the time an affected individual reaches mid-adulted, but in rare cases, symptoms of the disease can appear in childhood. Symptoms can be mental, cognitive and/or physical.
Mental symptoms include irritability, compulsive behavior, or aggression, anxiety and/or depression, difficulty determining if others are offended by what they have said or done, personality changes, and increased suicidal thoughts or suicide attempts. Cognitive symptoms include dementia and loss of short-term or long-term memory.
Physical symptoms include sleeping problems, uncontrolled and jerky movement that may initially appear to be a lack of coordination or restlessness, rigidness or twisting body, seizures, and loss of muscle control which can lead to difficulty swallowing or speaking, unsteadiness, and eating problems that result in malnutrition or weight loss.
In order to qualify for Social Security disability benefits on the basis of Huntington’s Disease, you must meet one of two impairment listings or show that you are no longer mentally or physically capable of working because of your Huntington’s, and there is no new job you can be expected to learn.
There are two listings under which Huntington’s could qualify, one under the mental listing for neurocognitive diseases if your disabling symptoms are all cognitive, and the other under the neurological disorders listing for neurodegenerative diseases.
To qualify under the neurocognitive diseases listing, you must experience at least one of the following problems that is significantly worse now than it was before: 1) problems with judgment and planning ability; 2) decreased coordination, such as walking or hand-eye coordination; 3) learning and memory deficits, especially in short-term memory; 4) inability to use proper social behavior or social judgment; 5) difficulty speaking or using language, vocabulary, or grammar properly; and/or 6) problems listening to others or paying attention to tasks.
To qualify under the neurodegenerative diseases listing, you must experience one of the following: 1) marked physical problems along with marked limitations in any one of the following areas: finishing tasks; managing oneself; thinking; and/or interacting with others; or 2) inability to control movement of at least two extremities (i.e. two arms, two legs, or one arm and one leg) that results in extreme difficulty balancing while walking or standing, to use arms, or to stand up from a seated position. Please note that “marked” means less than extreme but more than moderate.
If your Huntington’s symptoms place you into one of the listings categories, you can qualify for the compassionate allowance program when you first submit your application. Under this program, the most seriously disabling conditions receive expedited reviews, so you can expect an initial decision within 1-2 months rather than the usual 4-5 months.