Law enforcement trainings to lay groundwork for proper treatment of people with HD, other diseases

Tuesday, May 31, 2016


Amanda LE training-cropped
UI HDSA COE Social Worker Amanda Miller presents general information and details on how to identify HD symptoms to law enforcement and first responders in Altoona.

By Emmy Szymanski

Out of control. Angry. Drunk. These are just a few assumptions people may make about someone they encounter who has Huntington disease (HD)—dangerous assumptions that even police officers may make.

Unfortunately, these misunderstandings have occasionally led to unwarranted and improper treatment of people with HD. Now, the University of Iowa Huntington’s Disease Society of America (HDSA) Center of Excellence and the HDSA Iowa Chapter are taking preventative measures by educating Iowa law enforcement personnel on how to interact with individuals who have HD. As HD affects motor, behavioral, and cognitive functioning in an individual, police are now questioning outward appearances as they learn that an individual’s behavior might stem from a brain disorder.

Iowa is on the forefront of this national movement initiated by the HDSA, and several departments across the state have already undergone this specialized training aimed at promoting safe interactions between officers and individuals with HD.

“There have been some negative encounters based on misunderstandings,” said University of Iowa HDSA Center of Excellence Social Worker Amanda Miller. “Sometimes these are easily resolved, although sometimes they end in a court case. But for the most part, this training is meant to be a preventative measure.”

Sharing clinical facts and personal experiences to build understanding

Jamie Parish smaller
Jamie Parish
HDSA Iowa Chapter
The 90-minute training sessions offered to Iowa police departments and other first responders are a joint effort from the UI HDSA Center of Excellence and the HDSA Iowa Chapter. Each session utilizes a multi-person approach to provide a wide perspective on the issues surrounding interactions between first responders and individuals with HD. Miller provides general information about HD and descriptions of different psychological and physical symptoms and HDSA Iowa Chapter President Tammy Miller and Vice President Jamie Parish discuss their own family experiences with HD and law enforcement.

"I personally took interest in [these training sessions] because my father was a state trooper his whole life and he had HD,” Parish said. “I grew up with police officers in my life and felt like I could easily talk to them.”

Parish’s personal connection to HD allows her to give police officers a real-life, first-hand account of the different stages of HD. “At the beginning I tell a short version of my story and let the officers know I’m gene positive for the disease, so I may look normal now but when I do get sick I will slowly develop symptoms that aren’t visible. This also shows how the disease has very different stages and looks different in everyone.”

Covering both the medical and personal sides of HD, these sessions are meant to familiarize officers with the disease so that they can respond in the best way possible.

"The officers don’t need to be experts on HD,” Amanda Miller said. “We just want them to know what the disease is and to be aware of it.”

Iowa leading the way in HD trainings

Although the HDSA initiated this training nationally, Altoona Chief of Police Jody Matherly approached the HDSA Iowa Chapter to hold the first of these sessions in Iowa and the program has been picking up speed ever since. Having a personal connection to HD, Matherly sought training for his officers to ensure safe interactions between law enforcement and persons with HD and other mental illnesses.

"Up to 60 percent of individuals in prison are affected by mental illness and the numbers show that there is a problem,” said Matherly. “The first step in any resolution is keeping out those in prison who don’t need to be there. It is very important for us to be keenly aware that these illnesses do exist and we need to recognize them when we see symptoms and we need to know what to do.”

The training focuses on crisis intervention, de-escalating a situation, and then identifying the mental illness. While officers typically only have seconds to act in a given situation, Matherly hopes that this approach will help law enforcement reevaluate each case before they respond to any civilians who might display disorderly conduct or who appear intoxicated. In the end, he wants officers to take a step back from the situation, calm things down, and look beyond criminal law to see if there is another source contributing to the problem.

"We don’t want to arrest people who don’t need to be arrested,” Matherly asserted. “Instead we want to help these citizens, save them from any embarrassment, and refer them to the right people for appropriate help.”

While these sessions mainly focus on HD, the information carries over to handling other disorders like schizophrenia, Alzheimer disease, and even diabetes.

"This HD training goes deeper and helps tell officers that there is more to the story and urges them to take the appropriate action,” Matherly said. “Not a lot of people are familiar with HD but they need to know about it. Whether it’s HD or another illness, if we can give officers the information to know what to do and how to handle the situation, it will help across the board.”

Trainings met with success

Approximately 200 officers from four departments have already been through these sessions with great success, and the trainers are hoping to reach a few more departments by the end of the year.

"I’m very surprised by how responsive the officers are,” Miller stated. “It’s a long, intense training process that focuses on family issues and asks the police officers to adjust their response, but everyone is very invested and we have been getting great feedback.”

Matherly has noticed the benefit of these sessions in his precinct. “The officers left with a better understanding of HD—they know what it is and how it directly relates to law enforcement concerns, and this was key. [The HDSA Iowa Chapter team] was able to take the medical side of HD and put it in terms easily understood by the police. The officers left feeling more confident that they could deal with this appropriately.”

Even though this training was originally intended for police officers, the HDSA Iowa Chapter training team also plans to work with fire departments since fire fighters can be the first people on scene in response to some 911 calls.

Other helpful programs on the way

Meanwhile, officials are developing other programs meant to help those with neurodegenerative diseases. Matherly wants to start a program in Altoona that he previously launched at his former department. Originally created for people with Alzheimer disease, the program collects standard information about a person with a disease and their caregiver so that officers know who to contact and how to respond if they come across that individual who might need assistance.

“We might run into some of these individuals in the middle of the night and they might be acting strange,” Matherly noted. “[With this program], we can see who the person is, who to call, etc. There is no John Doe situation.”

Miller says she is excited to see Matherly’s interest in implementing this program.

“This program would be a monumental shift in the approach law enforcement takes to addressing the needs of their community members with HD,” said Miller. “Something like this, specific to HD, with officers trained on appropriate responses, could have an incredibly positive impact on the experience a person with HD has while interacting with law enforcement.”