Disability Issues

The ability to work and be productive in integral to our and others perception of ourselves. When a person has a disease or disability that prevents them from working as they used to be able to, they still should be able to work in a different fashion. In some countries the issue of disability is handled by the family taking over the support and care of the person who can no longer care for themselves or be employed. In other countries a significant governmental safety net is available to provide supportive and rehabilitative services. In some countries, such as the United States, the safety net is available (in late 1995) but only after some significant hurdles have been overcome to prove that the person in question is not able to care for themselves any longer.

The letter below has been slightly changed from the sample given in the back of the book by Neal Ranen from the Huntington's disease Clinic at The Johns Hopkins University.

December 12, 1995
Enid Jones
1239 Springfield
Springfield, MO 12345

Re: Thomas Smith, KUMC No 1234567

Dear Ms. Jones;

This is to provide medical support of the disability application of Mr. Thomas Smith who has Huntington's disease.

Mr. Smith was seen in our Huntington's disease clinic for the first time on November 15, 1994 and was diagnosed as being affected with Huntington's disease (HD). Symptoms began in 1993. We have followed Mr. Smith since then and are confident of the diagnosis based upon clinical observations and his positive family history of relatives (father, uncle and his sister.) with Huntington's disease. MRI findings on September 19, 1995, included atrophy of the caudate nuclei and the cerebral cortex.

Huntington's disease is an inherited neurodegenerative disorder that is gradually progressive, ending in death from infection of general debilitation an average of 16 years after onset.

There are three characteristic clinical features: (1) loss of the ability to control bodily movements; (2) loss of ability to think and to act quickly, to learn and to remember and (3) apathy and severe depression, often resulting in suicidal behavior. Patients also exhibit poor social judgment and may be irritable and aggressive.

When last examined on December 15, 1995, Mr. Smith had abnormal eye movements, slow/dysarthric speech, poorly coordinated finger-thumb tapping, and rapid alternating movements, a wide-based gait with poor heel to toe walking, choreiform movements and brisk deep tendon reflexes. He is at high risk for falling. The sensory examination, Romberg and cranial nerves are not affected in Huntington's disease.

Mr. Smith is slow and inaccurate with calculations, has poor recent memory, and at home cannot remember to carry out routine tasks such as: taking telephone messages, cooking or doing the laundry. His employer reports that he can no longer perform his duties on the assembly line. Frequently he made costly errors in filling customer orders when he was moved to a less demanding job in the factory. For these reasons, he cannot work there any longer. The patient last worked on July 26, 1995. >br>

We do not routinely administer IQ tests to people with Huntington's disease for purposes of disability assessment. Although they decline, the IQ remains above 70 and does not adequately reflect the person's ability to work. This is because the person can perform some tasks when continually prompted, as is the case with IQ testing. However, people with Huntington's disease cannot perform even a simple sequence of tasks unprompted as would be the case at even a low job level.

Vocational Rehabilitation is not helpful to people with Huntington's disease, Their ability to learn new tasks is poor. They are slow and disorganized. Their poor motor coordination prevents their safe employment in manual labor.

Mr. Smith has suffered from depression associated with Huntington's disease since 1994. He is apathetic and irritable. These symptoms also interfere with his ability to work.

In summary this 39 year old man was well until 1994 when Huntington's disease began. He has been unable to work since September 30, 1995 because frequent costly job related errors and the fact that he can no longer drive to work because of his Huntington's disease.

We hope that you will grant disability to the fatally ill individual. If you wish further information, please call us at (913) 588-6970.

Sincerely yours,

Richard M. Dubinsky, MD
Associate Professor of Neurology

pc: Dept. of Medical Records, KUMC
Mr. Thomas Smith
789 West 3rd Street
Kansas City, MO 65432

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Suggestions and comments are welcome. Please mail them to me at: Dubinsky@kuhub.cc.ukans.edu