HD families are essential in educating community professionals (such a police officers, judges, lawyers, and emergency responders, etc.) about HD and the impact HD has on a person’s physical, cognitive and behavioral abilities and/or limitations. Providing factual information about HD during interactions with community professionals is an important way raise awareness and avoid injustices for HD persons.
Ways to Educate and Advocate Law Enforcement
Contact your local police, fire stations, neighbors and businesses to provide brief information about your loved one with HD so they are aware of how to communicate/assist them when they are in the community.
Share information that will be helpful for law enforcement on how to work with your loved one. This will hopefully avoid misunderstandings or improper detainment of a person. Advise them to give HD person adequate time to process question and respond; make eye contact to ensure they are able to focus; when giving tasks/commends state one at a time for better comprehension by HD person, and provide information about any balance and chorea issues, etc.
As situations arise, try to be proactive and problem solve with law enforcement on how to prevent future incidents. For example, get a wallet card or HD identification bracelet, provide law enforcement with a list of emergency contacts or put a list in the wallet of the individual with HD.
If you have experienced negative interactions with law enforcement or other community professionals you may ask your HD care team to write a letter on your behalf to relay important information about HD and his/her current symptoms, limitations and medications.
Wallet Card or HD Identification Bracelet
“I Have Huntington’s Disease” wallet card or HD identification bracelet, is highly recommended for all HD persons as it can be useful in providing quick information about HD, as well as who law enforcement can call to get further information about the person.
Adapted from an article by: Lisa Kjer-Mooney, LCSW