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Huntington's Disease Advocacy Center - HDAC Article: - Self-Advocacy, Part Two: Documenting Disability
HDAC Article: - Self-Advocacy, Part Two: Documenting Disability
Self-Advocacy, Part Two: Documenting Disability
-- Marsha L. Miller, Ph.D.     print-friendly ]

Documenting a disability like Huntington’s Disease can be difficult because there are a multiplicity of problems that combine to prevent an individual from working. If it was just mood problems, they could be treated. If it was just involuntary movements (assuming that they aren’t extreme), the job could be redesigned around them. If it was just memory problems, there might be some ways to compensate. But it’s not – it’s all of those things plus deficits in executive functioning including difficulty in initiating activities, an inability to multi-task, impulsiveness, and impaired judgment.

Further confusing disability determination is the fact that many people who are already disabled with Huntington’s Disease look and sound healthy. People with Huntington’s Disease want to work and be independent, just as anyone would, so your loved one may go to a determination meeting and agree that yes, there are jobs they could do when you and their doctor know that they really cannot. If you suspect this is the case, you need to take an active role in the process.

Despite the difficulties, you can get approval for disability benefits on the first try. Prepare carefully, understand the process, and provide the needed information in such a way that decision makers can clearly understand that the criteria have been met.

Before you begin filling out disability forms, review a list of Huntington’s Disease symptoms so you don’t forget to mention any which apply. Link the symptom to the job that you or your loved one with HD has been doing. Also keep in mind the symptoms that mean that the job can’t successfully be redesigned and that vocational rehabilitation won’t work.

Before starting the processing of applying for disability benefits, it should help to review the criteria. Once you understand what decision-makers are looking for, you will have a better idea of what you need to tell them and document. I am not suggesting that you make up things or exaggerate. However, there are so many symptoms associated with Huntington’s Disease that you could easily over-emphasize the wrong ones and neglect to present information on the very ones that they are looking for.

You will need to be detailed when you fill out disability forms. You are not only documenting the symptoms that make work impossible, you are also educating people about the disease at the same time. As suggested in part one, make a copy of the form before you start so you can redo it if necessary. Take your time; review what you have written. You may want to ask your HD support group social worker, if there is one, to review what you’ve written. Another possibility is to show it to a friend who is unfamiliar with Huntington’s Disease. Ask them to read it to see if they understand it and whether they would conclude that a person is disabled from what was written.

Before you mail off your completed form, make a copy. You may need to refer to it again while the process is ongoing and it will save time when you have to fill out similar forms.

There are a number of specific symptoms that clearly affect an individual’s ability to work. Review the symptoms described in the Physicians Guide to the Management of Huntington’s Disease and Understanding Behavior in Huntington’s Disease, both available for download at

For example, memory and learning are affected by the disease. Both the ability to learn new information and the ability to freely recall information once learned are impaired. Learning is further complicated by difficulty in filtering out distractions and switching attention. Mental processing slows down.

Executive function is also affected by the disease. It becomes difficult to initiate activities and to plan, organize, prioritize, and sequence. Impulse control is impaired. Irritability and outbursts are common.

Physical symptoms such as balance problems, involuntary movements, and impairment of hand-eye coordination also negatively impact the ability to work.

Tie symptoms to work requirements. Here are some examples:

  • I can’t keep up with the required work pace.
  • I can’t follow the discussions in staff meetings.
  • I don’t understand the new projects and my responsibilities.
  • I haven’t been able to learn the new computer system.
  • I can’t organize the materials and information I need to do my job.
  • When procedures at work are changed, I get confused about what I am supposed to do.
  • I can’t stock shelves anymore because I am dropping things.
  • My balance problems make me a danger to myself and others on the factory floor.

In addition, be sure you make clear that rehabilitation will not help to make someone with HD employable again because the disease is progressive. Many disability forms have a section asking if you [or your loved one] are interested in rehabilitative services. Don’t just check ‘no.’ Write in that you wish these services could help but because the disease is progressive, it’s not possible to develop strategies for overcoming the losses in cognitive and physical disability. You want them to know that you are not declining these services because you’d rather collect disability!

Social Security Disability

You can find the criteria for Social Security disability below. As you can see, Huntington’s Disease does not have it’s own criteria and evaluators are directed to use the criteria for disorganization of motor function or chronic brain syndrome. " Disability Evaluation Under Social Security - Adult Neurological Impairment" "Disability Evaluation Under Social Security - Adult Mental Disorders

This is at the root of why it’s so hard to get Social Security Disability approval on the first try. Neither really fit well, the implication goes more to one, serious symptom rather than a constellation of sometimes subtle ones. Further, an understanding that unlike with some other neurological problems, disability is inevitable with Huntington's Disease is completely lacking.

Phil Hardt, an HD advocate who has Huntington’s Disease himself, has a good section on applying for Social Security at the HD Lighthouse. I can’t improve on his suggestions so visit the Lighthouse, read them, and print them out! Notice how in his examples, he links an explanation of HD to the applicant’s own symptoms and then to the job requirements that can no longer be fulfilled. "Phil Hardt on Social Security"

Give your doctor a copy of a sample letter which diagnoses Huntington’s Disease and it’s progression to a disabling degree. We link to one in the FAQ which was written by a doctor specializing in HD which many doctors have found helpful to use as a model. This same letter can also be found in Phil Hardt’s section in the link above. Notice that Dr. Dubinsky provides concrete confirmation of the illness including results of his examination and an MRI. He explains how the symptoms prevent the individual in question from working. He educates the reader about the disease. He deals upfront with SS’s tendency to look for a below normal IQ by letting the reader know that an IQ score does not adequately reflect an ability to work.

If the agency responsible for determining Social Security disability decides to send you or your loved one for some kind of examination, find out more information immediately. Who is the examiner? What is his experience with Huntington’s Disease and neurological disorders in general? What tests will be administered?

It sometimes happens that the agency involved may want to send the person to someone who will administer a short IQ test and/or ask questions to determine dementia. Since IQ is preserved for a long time in this disease, an IQ score is not a good measure of impairment. And often the questions used to detect dementia are very superficial. What year is this? Who is the President of the United States?

By asking about these things in advance, you have the opportunity to avoid having to appeal a negative decision. In my husband’s case, I explained how a general IQ score was not a good indicator of someone’s inability to work. Just in case they didn’t want to listen to me, I called one of our U.S. Senator’s and his office called the department, not to try to influence the decision but to say that adequate testing needed to be done. In the end, they agreed to look at subscales of the IQ test and his application was approved on the first try.

Supporting medical documentation

States differ but the person handling my husband’s case told me that they were seeking further assessment because the neurologist’s diagnosis of my husband’s disease seemed subjective. They were looking for tests and numbers and results of diagnostic procedures. The neurologist had sent him for an MRI, did tests, administered the United Huntington’s Disease Ratings Scales. This was in the records, but not fully referenced in the letter.

Discuss the letter with your doctor. Once he knows that they are looking for test results as ‘objective’ indicators, he or she can include them.

This problem of ‘objective tests’ came up with a friend’s husband who is in late stage Huntington’s Disease. Because she must work outside the home, my friend placed her husband in a nearby nursing home and visited every day. State bureaucrats, reviewing records looking for ways to save on Medicaid payments to nursing homes ‘decided’ that her husband could stay at home and have aides come in! They said there was no objective indicator that he was mentally disabled as well as physically. The nursing home protested, the state stood fast. As silly as it sounds, the addition of his score on the Mini Mental States test to his record resolved the problem.

Finally, talk to your doctor's clerical staff about the medical records. Make sure that they will be sending the part of the medical records relating to Huntington's Disease. As mentioned in Part One, one man's disability application was denied because the office staff sent medical records related to an accident from which he had recovered, not his neurological records.

- published -0-5--2008