The definition of Huntington’s Disease used by the Social Security Administration is so outdated it causes many to be denied disability coverage the first time. According to the SSA, Huntington’s is simply a movement disorder. This definition does not take into account those that have issues with memory and thinking processes or behavioral or other psychological problems. And since each person’s progression in the disease is totally different, the person seeking disability may not even have the physical symptoms until the final stages when they have already lost the ability to process normal thoughts and actions. As a result of this incomplete definition of the disease, many are denied disability coverage.
My brother in law, Bill, is one of them. Physically, he does appear to be fine. He does occasionally have some trouble walking and maybe a little bit of difficulty swallowing; his real symptoms are more cognitive. His memory is unreliable. He has a hard time following through in some thought processes. For example, if he wants to cross the street, he simply starts walking across the street. His brain has trouble processing that he needs to make sure to check for any cars coming before he starts to cross the street. He is also affected mentally and emotionally as well. He is easily agitated and can lash out in anger or burst out crying for no real reason. Obviously, these are not physical issues.
For the several months, we have been working to get him approved for disability so that we can set up in a home of some kind, but it is not going well. In the first round, he has already been denied. Basically because the SSA believes there is no physical reason that he cannot work. And based on the SSA’s definition of the disease, that would make sense. He has no physical symptoms, so he must not have the disease is pretty much what they think. This has to change. The definition of Huntington’s Disease used by the SSA needs to change to cover all symptoms and make it easier for families to obtain disability when a loved one is no longer able to work and provide for themselves or their family.
Right now, there is a bill before Congress that will redefine the definition of Huntington’s Disease called the Huntington's Disease Parity Act. This bill changes the definition to include the other symptoms of the disease and not just the movement disorder that it was first defined as. In addition, this bill will also waive the current 24 month waiting period before someone can be covered by Medicare. For people such as my brother-in-law, this is very important. Currently, he is not being treated with any of the medications that are available to help minimize his symptoms. And, if he was approved for Disability today, he wouldn’t be able to purchase insurance and still be able to pay for a place to stay. Plus, he needs some of the medicines that they prescribe to Huntington’s patients today so that he might be around in two years when Medicare would kick in. But, if he can’t pay for it, how can he get the medications to survive the next two years? Of course, all of this hinges on whether or not he is considered incapable of working given his current status within the disease. He is not, but the Social Security Administration believes otherwise, leaving him to either live on the streets or be a burden on family members that are struggling in their own way with the disease.
I know we all have our own views about Social Security Disability and if it is the responsibility of the government to care for those who are incapable of caring for themselves for whatever reason. I am not asking you to do something that you might be against, but I do ask that you at least consider contacting your Representatives and Senators to encourage passage of this bill. First, it will help to raise awareness of Huntington’s Disease and the many ways it effects the roughly 30,000 people diagnosed, their families, and the roughly 250,000 that are at risk for developing this disease. In addition, passage of this bill will help to provide the necessary medical treatments much earlier than before for people such as my brother in law, who is single, unable to work and could not afford the cost of health insurance if he was to be approved for disability. Please consider contacting your House of Representatives (https://writerep.house.gov/writerep/welcome.shtml) or your Senators (http://www.senate.gov/reference/common/faq/How_to_contact_senators.htm) to encourage passage of The Huntington's Disease Parity Act.
You can read the details of the bill at http://www.govtrack.us/congress/bill.xpd?bill=h112-718
Thank you for your help and support!
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