How to keep a loved one with HD from mistakenly getting arrested

My wife, Jill, sometimes daydreams about items we could sell on Etsy, an online store for handmade or vintage products. One idea is a T-shirt that says: “I’m not drunk. I have Huntington’s disease.”

Jill is gene-positive for the disease, as was her father and multiple people on his side of the family. As a result, we’re well acquainted with the symptoms of Huntington’s, which may include involuntary writhing movements, an unsteady gait, emotional outbursts, increased aggression, and slurred speech.

Naturally, if someone is unfamiliar with Huntington’s disease (HD), there’s a good chance they may mistake a patient’s visible symptoms for the effects of intoxication. Unfortunately, this can result in police officers arresting patients for disorderly conduct if they appear to be inebriated.

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I recently had a wonderful conversation with Alan A. Pfeffer, a lawyer who was previously the advocacy chairman of the Albany, New York, chapter of the Huntington’s Disease Society of America (HDSA). Sadly, his first wife and his daughter, Charise, both died from complications of HD.

Pfeffer told me that in 2015, someone called the police on Charise because they thought she was drunk. Fortunately, Pfeffer had given classes about HD to the local police department two years earlier, so the responding officer understood Charise when she explained that she was gene-positive for the disease. She was not arrested.

Because he’s so passionate about this topic, I asked Pfeffer to share some comments via email. Excerpts of our conversation follow, with light editing for clarity.

CB: Why is it important to make sure that a loved one with HD isn’t mistakenly arrested because they appear drunk?

AP: An encounter with the best-intended police officer is fraught with risk for an HD symptomatic person. The symptoms of HD can potentially escalate the encounter. A slow response to a question can be viewed as avoidance or thinking of a lie. An officer’s instruction to “stop moving” to a person with chorea is impossible to comply with. Raising hands above your head is the wrong response to “put your hands behind you.” Attempting to get an HD identity card from a wallet or handbag can be mistaken for reaching for a weapon. Any of these or other things interpreted as resistance may escalate an initial charge of public intoxication to resisting arrest. Even yelling at the officer. A night in a holding cell or jail may be life-threatening for a person with HD.

Two things to do: Wear a bracelet or necklace that identifies [you] as a person with HD and [includes your] caregiver’s phone number, and speak with the local police in advance.

How does a caregiver talk with local police?

Together with our HDSA chapter president, I started with the county district attorney. Officers who know what HD is, its symptoms, and how families are affected change the encounter. Officers must know: The brain is dying, and there is nothing that the person with HD can do to change the behavior being exhibited.

We contacted the person responsible for internal training. That resulted in a presentation to staff from the DA’s [district attorney] office and the chiefs of police from all the departments in the county at a monthly lunch. We presented using the HDSA Law Enforcement Toolkit. We ran the PowerPoint and gave them the handout that comes with the kit. We told stories. The classic one was how chorea is mistaken for drunkenness, along with the national suicide statistic. [The rate of suicide among HD patients is up to 10 times higher than the national average.] How to avoid getting sued catches their attention.

I followed up by calling my town’s chief of police. Since he just attended the DA’s session, the door was opened to present to his officers. The police chief scheduled me to meet with five sergeants. Besides presenting the toolkit, I gave examples of how police may encounter a person with HD: a missing persons report; a call to 911 from a member of the household that the person with HD is threatening violence to himself, a family member, or is simply breaking everything in the house. One of the sergeants was actually on such a call once, and the person with HD had to be removed from the home.

I gave them a picture of my HD daughter and told them about her and how she walked through the neighborhood at all times of the night and day. It’s important to also share information about the needs of a person with HD should they be arrested: the daily need for a large amount of calories, risk of choking, potential [risk of] suicide, medicine, behavioral problems.

I moved on to the county office of mental health and offered to participate during its biannual crisis intervention training that included police officers from college campuses, correctional facilities, and several different counties. Our HDSA chapter’s social worker gave the main presentation using the toolkit PowerPoint. I told stories.

When my daughter was stopped walking through the neighborhood, it all went well.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.