Chapter 6 - Physicians Guide To Management of HD/Other Issues

Disability

The progressive nature of Huntington's disease will eventually force patients to retire from employment. Unfortunately, many patients' job performance will already have begun to deteriorate before they have received a diagnosis, or before they have made the connection between HD and the problems they are having at work.

The actual difficulty is most often a problem of organization, flexibility, and the speed of mental information processing, but the patient may appear careless or lazy, may be irritable at work, or may even be suspected of being intoxicated. This may lead to an individual being disciplined, passed over for raises or promotions, or even fired for cause when in fact the problem is a medical disability due to HD.

Therefore, early identification of HD-related problems at work is very important, for the purposes of securing accommodations at work, and eventually disability.

There may also be issues of work safety. A physician or social worker may be able to help the individual inform superiors at work of the nature of the problem, decide when to take retirement, and navigate the disability application process.

In our experience, many employers are sympathetic once informed, and have provided less stressful work environments and assistance with disability retirement. The Americans with Disabilities Act may protect individuals with HD who need accommodations, but are still able to work.

Once the decision to apply for disability has been made, the physician will need to complete the Social Security Disability Determination Form, as well as forms related to private policies the patient may have. We have included a sample disability letter in Appendix 5 (not on line).

HD is a complex condition and the patient may be unable to work, but may not have a single sign or symptom which, by itself, would qualify her for disability. Therefore, disability letters must be comprehensive, must stress functionality, and should include specific examples of dysfunction at work.

Because of the particular nature of the dementia found in HD, routine IQ test scores may not be relevant to the level of impairment because they do not reflect the organizational and task-switching problems found in Huntington's disease. Tests specifically directed toward executive function will better identify HD-related cognitive deficits.