Help 4 HD International Exhibits and Presents at the Crisis Intervention Team International (CIT)

Help 4 HD International's LEEP program began in 2014 when Help 4 HD International exhibited at its first International Association of Chiefs of Police (IACP) conference. While there, our education team came face-to-face with hundreds of law enforcement agencies worldwide. Our team talked about the nuances of Huntington's disease and why law enforcement agents must understand the symptoms and characteristics of HD. Agents were genuinely intrigued to speak with our team about many of the challenges that HD individuals face throughout their lives.

Why is law enforcement education important? Individuals living with HD suffer from chorea, which, as you know, is the involuntary movement associated with HD. Individuals suffering from chorea often appear to be intoxicated or on drugs, and they are often targeted by law enforcement because of this pronounced symptom. They are often wrongfully accused of being drunk in public. People with HD often have slower response times, which can be misconstrued as defiance of the law. They also suffer from impaired gait and slurred speech, making it even harder to defend themselves when explaining to officers that they are not intoxicated. HD is also a neuropsychiatric disease that law enforcement agents need to understand better for the public's safety and, of course, for the protection of the individual living with HD. Our mission is that through this education about HD, we can reduce the chances of unnecessary altercations between law enforcement agents and our HD individuals and reduce the chances of arrest when the person is not actually breaking the law.

This year Help 4 HD International was chosen to present at the Crisis Intervention Teams (CIT) International Annual Conference.

Help 4 HD International knows that opportunities like this don't come around often, so we took to social media to talk to our community about a situation they have had with law enforcement to make sure our presentation was the best it could be, and we were representing our HD community in the best way possible.

The responses we received from our community proved to us once again how vital law enforcement education is in a community like ours and how we have to grow this program quickly. Individuals living with Huntington's disease are often put in unnecessary altercations with law enforcement which often leads to extreme consequences put on our loved ones with HD, like arrests and even physical and emotional abuse.

Here are some stories that were shared with us.

1. My son was in the state mental hospital in Florida, a place that’s supposed to help and protect patients suffering from mental illness. Instead, two security guards took him into his room, away from the view of cameras, and beat him, leaving bruises on his body. I began a fight to get him out of there and finally succeeded, but I never really got justice for him.

2. I wouldn't say I fear law enforcement necessarily now because he has an ID bracelet saying he has HD and to call his doctor or me if they have questions, but before he had that, we had a bad experience at the movies one evening where someone called the police thinking he was on drugs because of his movements (they weren't really that bad then I think the individual was just overly concerned about other people's business) anyway the officer took us aside after the movie and ran our licenses and asked a million questions if we were on drugs and such and really was more embarrassing than anything. I assured the officer nicely that we both worked with children and had never done drugs nor would we ever do them. But he still kept us there for at least an hour, asking questions. This was before we had an official diagnosis, but we knew it was in his family. After that, he got tested so that we would have proof if there was ever another issue. On top of that, it was a "Christian" movie we went to...I think it was War Room or something similar, a highly emotional type of film. Good movie, but I wish the officer had told the lady who called to put her nosey self in someone else's business... certainly not very Christian of her.

3. My loved one was stopped while walking back to our hotel by the Puerto Vallarta police. We were strip-searched for over 20 minutes as they pointed assault rifles at us from a pickup truck.

4. My sister was a Vancouver police offer (BC Canada), and she got assaulted, including being tasered, and put in the psych ward. My sister identified herself as HD, and they mocked her. It’s a horror story that has left me with horrible PTSD and fear. Janice was terrified the VPD was going to kill her like they did Myles Grey (he did not have HD). When I speak to HD clinic doctors, they all say that it is common. Please talk to the HD social workers, neuropsychologists, and neurologists. Thank you for leading this. The VPD is supposed to have HD recognition and non-force training that is supposed to be in recognition of my sister, constable Janice never heard back from the VPD

5. No fear at present. Her worst symptoms are balance related, but since she uses a walker, no one thinks anything about it if she is wobbly. I do wonder if that will become more of an issue as the cognitive issues and involuntary movements become more pronounced.

6. I do have a little bit of fear in one area. As I mentioned, she has significant issues with the balance due to the HD. She’s also on a blood thinner for a separate issue. She has fallen at home at times, and due to being blood thinner, she bruises and bleeds easily. The local doctor and hospital are aware of all this, but if we have an encounter with law enforcement, they aren’t and may start jumping to some wrong conclusions about her domestic situation, if you get my drift.

7. I wish law enforcement knew what HD is so I don't have to educate them each time. What went right? I had a conversation with law enforcement before they spoke to my loved one with HD. I educate them and explain the symptoms so they don't look at the behaviors as him being defiant or uncooperative. I am assertive and protective of my HD loved one. I don't let the officers talk to him first. I do all the talking. We have had several encounters with officers recently. I must say, by me being proactive and doing the speaking and educating, they have been very helpful. Most have never heard of it. I also carry the cards around, which explain the disease and symptoms. Each department needs to have a department that is specifically trained to handle people with HD and also mental illness. Sending out untrained officers to these situations is not in anyone's best interest. This week, I also had a neighbor call adult protective service on him. This was heartbreaking because this neighbor was a support person. She was annoyed that my husband came and talked to her. I called the investigator, explained what HD is, and had to educate him as well. Luckily, the case is closed. They also need to be educated.

8. “Ben has had SOOO many encounters with police. Some good, some bad, some very bad. I think he has PTSD from them!

I think one of the worst that I recall was when he was living in Alabama. He was living on his own, off his meds, and had already had a couple of interactions with the police due to his hallucinations. I had been explaining to them over the phone his condition and that he needed to go to the VA hospital. They instead took him to a local inpatient, who changed his meds and let him out in 7 days, which did not go well.

One day he was in a car accident at a corner literally next to his apartment. He had just bought ice cream at the corner gas station. He waited for a bit, but it was “taking so long” for them to get there that he decided to run home to put his ice cream in the freezer. Well, of course, they showed up while he was leaving the scene. They were yelling at him, “Come back,” and he was yelling, “he would be right back….”. They ran after him, guns drawn, and tackled him. The sweet young lady that worked at the gas station had told them he lived right there. He said he would be back. He was just putting his ice cream away…she called me while it was happening, she was so scared they were going to kill him, and they were not listening to her at all. I tried talking to them, and they wouldn’t listen to me either. They kept him for another week + in jail, and every time I called, they would not listen to me. Other than running home, he was being compliant. One of the officers at the jail, instead of having any understanding or compassion or anything, told Ben he was sick of dealing with him and that Ben better get out of “his town” and that he wished they had killed him.”

9. Six months before Daddy's suicide, he had to be removed from the church because he wanted to talk to the congregation about God. He also went to the police department and accused them of surveilling his house (paranoia). He was removed from the city building because he thought they were trying to sabotage his car detail business. This is Crystal Collinsworth. I didn't realize I was posting it from my writing page.

10. A neighbor called the police because my mom looked so thin and awful in her final stages of Huntington’s. We had to spend that Easter in the emergency room, followed by a hospital bed while things got sorted. A counselor told me that my mom was supposed to be getting x number of calories for a woman her height- I was like, but she can’t swallow much. Eventually, we got to go back home, but it was truly awful.

11. Neighbor called adult protective services. Said I starved him, and that's why he lost so much weight. He hid in the house. I was an hour away and had to call the investigator. So sad

12. My wife has HD and has been stopped by LE twice in the last year. Both times were because of security at either Home Depot or Walmart. Security assumed intoxication and called LE.

In the Home Depot stop, the officers were doing a 10;00 AM field sobriety test—that exacerbated the symptoms of HD with the stress of the situation in Bee Cave, TX. In fairness to LE, both officers were under 25 years of age. Officer Smith was aggressive and was restrained by the junior officer. Kudos to the junior officer.

I spoke with the Home Depot manager after the situation. (I had two of my kids that worked at that store and had won 5 Homer Awards between them)

The store's handling was NOT in the protocol for Home Depot. He apologized and appreciated that I did not lodge a complaint with HQ in Atlanta. (I have a close personal friend that knows Arthur Blank, one of the founders of Home Depot—it is an amazingly small world).

A Walmart in East Texas also called LE and my wife was again stopped by LE. The officer did not see a problem in that incident. In fact, the officer, again, in the morning, thought Walmart security had mishandled the situation.

There needs to be a card or letter of some kind from Doctors or HD Org to show LE and business security to help them understand that they are not seeing intoxication. They are seeing functioning people with movement handicaps.

13. From a mother and caregiver to LE:

1) Don’t jump to conclusions; you’re probably wrong

2) Listen to the family members; they probably know how to de-escalate a situation, what works, and what will make it worse

3) have some compassion

4) It’s not their fault; it’s the disease

5) They will have very slow response time. If they can respond at all, please be patient

14. I had issues with being drunk at bars or at a concert and walking to my truck, not in my local city, but around Houston. Although my sister was driving, and her vehicle was towed, she was arrested for driving drunk. No other drugs in her system, and at the time, our mom hired a lawyer because the amount over was just barely considered drunk. We think that they knew her poor driving & knew they would make money. She was diagnosed at 30.

15. I think, in general, we're just profiled more; I can't even go fishing without the game Warden asking questions. I've been told by TSA loudly to stop moving so others can go through quicker. I tell cops right away I have HD, and I would say 10 to 20 percent of them don't seem to believe me.

16. I’ve had terrible experiences with our county. I’m literally scared all the time.

I also remember my dad being beaten to the ground many times and arrested by officers when he wasn’t even the one in the wrong. He did not know, nor did we he had HD, but when officers were around, he would lose his ability to speak correctly for himself, which always ended up with him being arrested and beaten down in front of us kids. Oh, the memories. I won’t even go into what my brother has been through with the police.

I could go on and on and on this subject. I would love it if any of them cared or even learned about the disease.

17. My husband had two incidents that were absolutely horrible. Both are very long stories. The first time the police called me, I explained that he had HD and was only off balance because of it. He passed a breathalyzer test. I begged them not to arrest him, but they were already in the process. He spent over 18 hrs. in jail. The second time he had stopped at a closed road to ask the officer for directions for an alternate way home. Another long story, but he ended up being tased. Just awful! Both things should never have happened.

I wish that he would have had some kind of medical alert bracelet. He was fine to drive, just had issues with his balance.

18. It was about a DUI, and she told me she had HD. They didn’t arrest her.

One time she got arrested, they fed her an extra peanut butter sandwich because of HD.

Not all cities are like this at all. Grateful Louisville is one.