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Educating Law Enforcement and Medical First Responders on HD

2016 HDSA Convention Summary Article

Educating Law Enforcement and Medical First Responders on HD

Presentation Title: Effective Strategies for Educating Law Enforcement and Medical First Responders on HD

June 3, 2016


Doug Schulte — member of the HD community living in California and working to educate law enforcement on Huntington’s disease.

Morgan McLane — member of the HD community living in Western Pennsylvania who is involved with fundraising for Huntington’s disease research.

Officer David Coleman — law enforcement officer in Pittsburgh, Pennsylvania who attended an HD support group meeting prior to this presentation.

  1. Background

The 2016 Annual Convention of the Huntington’s Disease Society of America (HDSA) took place in Baltimore, Maryland, from June 2 through June 4, 2016. The HDSA Convention is the largest Huntington’s disease convention in the world. It combines education, advocacy, and research in three days of learning for the Huntington’s disease community.

One of the presentations given at the 2016 convention was entitled “Effective Strategies for Educating Law Enforcement and Medical First Responders on HD”. This article will summarize the main points given in the presentation. It lasted a little over an hour, with 30 minutes allocated to Doug’s presentation, 30 minutes for Morgan and Officer Coleman to speak, and 10 minutes for questions.

  1. Presentation Part I: Doug Schulte (30 minutes)

1. Introduction

As a caregiver to his wife, Doug is active in San Diego’s HD community. He spoke about the work he has done to educate law enforcement on HD in his county. In the city of San Diego, Doug has given over 30 presentations and educated over 1,000 law enforcement members. His goal in this presentation is to give an overview of the work he has done in order to give audience members a roadmap on how to educate law enforcement in their communities.

During his talk, Doug references mental health as it relates to HD and law enforcement. From a law enforcement perspective, the behavioral symptoms of HD appear similar to those of mental illnesses. As such, the educational resources on HD made available to members of law enforcement fall under the same category as resources describing other neurodegenerative and mental health conditions.

Doug began by sharing the story of his involvement with the HD community. In addition to caring for his wife, who is in the advanced stages of HD, Doug attends support groups and fundraising events in San Diego. He has had first-hand experience with law enforcement officers who are largely unaware of HD and misinterpret the situation as someone being under the influence or intentionally uncooperative. These officers are insensitive to the fact that HD symptoms can often mirror those of individuals under the influence of drugs or alcohol or those of individuals living with different forms of mental illness. Because of these negative interactions, Doug is driven to help HD families avoid unnecessary altercations with the police by educating law enforcement on HD.

Doug’s ultimate goal is that first responders, the medical community, and the HD community can work together to support families with HD.

2. Explanation of Doug’s efforts to educate officers in San Diego

Doug described the efforts made in San Diego County to educate law enforcement on HD. In the last 5 years, Doug claimed that the number of mental health incidents that law enforcement responded to doubled, indicating the increasing importance of educating law enforcement in San Diego on HD.

To begin educating law enforcement in San Diego on HD, Doug contacted the Psychiatric Emergency Response Team (PERT). Teams such as PERT exist in all major counties nationwide and consist of specially trained officers paired with licensed mental health professionals. PERT provides clinical support, education, and training to law enforcement for dispatch calls involving persons with mental health crises. They aim to provide appropriate crisis resolution by connecting people to the least restrictive level of care. This can help prevent unnecessary incarceration or hospitalization. PERT is a source of communication between law enforcement and the mental health system of care.

Importantly, PERT also provides education and training to law enforcement members on mental health issues. This is where Doug saw the potential for education on Huntington’s disease. Members of law enforcement attend PERT academy, where they undergo a 3-day intensive training. Doug assembled a team of HDSA members to present to PERT supervisors, clinicians, and PERT academy officers about how to incorporate HD into their current law enforcement curriculum. The HDSA presentation was well received.

Since then, Doug’s team has given classes on mental health training to smaller agencies as well. In his opinion, the relationship with PERT has helped spread the word and is the foundation of his strategy’s success. Doug’s take-home message was that contacting one’s local PERT or PERT-equivalent is a great way to start educating officers on HD.

It is important to note that law enforcement officers are only required to receive 12 hours of mental health training and thus rely heavily on teams like PERT. Doug argues that system-wide change is needed in order for these officers to receive a more comprehensive education on mental health with the goal of training officers that are more compassionate and helpful towards people with HD.

Other beneficial resources that exist in San Diego County include:

  • The Resource Access Program (RAP), a pilot program to train paramedics on how to respond appropriately to frequent 911 users (such as some HD families). Resources like RAP are emerging in metropolitan centers across the United States.
  • The Take Me Home Program is a regional online photo-based information system hosted by the San Diego Sheriff’s Department. It is accessible online to all law enforcement in the county and assists them during contact with members of the community who have conditions including HD, autism, dementia, Alzheimer’s, and Down syndrome. Through this program, people can register the specifics of their condition along with a photo and emergency contact information. It is important to note that this program only works if families enter their information, making it important for members of the HD community to actively seek out these tools.

Doug also mentioned the potential for educating paramedics about HD since they are already required to receive continuing education four times a year to get refreshed on advanced life support skills and recent protocol changes. Other agencies like the fire department do refresher trainings, which could be another potential channel through which to spread HD awareness.

3. Advice for presenting to law enforcement officers

Doug presented a number of tips for giving successful presentations to law enforcement groups:

  • Personalized PowerPoint presentations are more effective.
  • If the presenter has a personal connection to HD, include personal anecdotes, particularly any stories involving law enforcement officers, to give audience members a better understanding of the disease and its connection to the profession.
  • Share information about the behavioral symptoms of HD that have the potential to increase the frequency of interactions with law enforcement, such as impulse control or memory impairment. For example, the presenter could share that one of the behavioral symptoms of HD is shoplifting. Because Huntington’s disease impairs memory and attention span, the person may forget to pay for an item before leaving with it. It is crucial for law enforcement to understand that people with HD are usually not intentionally stealing. The disease has taken away their ability to control impulses.
  • Include possible solutions and reference where past successes have occurred.
  • Provide video documentation of the presentation for continued reference as well as additional online resources.

4. Understanding the 911 system

Doug finished his talk by discussing the 911 system and the resources used by individuals charged with responding to calls. On average, 40% of San Diego residents have called 911, but this number is much higher for members of the HD community, especially among people who have fallen or who display difficult behavioral symptoms.

When sharing the true story of an HD family in San Diego whose middle-aged son began displaying difficult behavioral symptoms, Doug described the overly aggressive approach taken by the local law enforcement members involved. Rather than being sensitive to HD symptoms, eight officers arrived at the home of this family with rifles and canine units. This was a traumatizing event for the family and likely could have been avoided if the 911 caller had given more information to the dispatcher about their son’s HD diagnosis.

The second time that the family called 911, they were better informed thanks to resources from a support group, and specifically requested the PERT team. This time, three calm law enforcement officers came to the home. Seeing that the family was visibly upset, the officers assured them that they would take care of their son and would not hurt him. Next, the police officers did something crucial: they called for a medic response. Paramedics arrived, and the son was taken to an emergency room with a psychiatric department and given medications to help with his behavioral symptoms. This story shows that a clear line of communication between HD families and law enforcement representatives is crucial.

When on the phone with 911 dispatchers, Doug advises that HD families give clear, specific descriptions of the situation, and mention the influence of Huntington’s disease. If HD is mentioned on the phone, resources like the Resource Access Program may respond to the call. If the officer arriving at the scene has specific information, they are more likely to adopt an understanding and helpful approach to the situation.

Doug finished his segment of the talk by explaining that law enforcement agencies are actively looking for opportunities to educate their officers about HD and that the HDSA presentation he has used with officers in San Diego is a successful way to achieve improved understanding of HD among law enforcement officials.

  1. Presentation Part II: Morgan McLane and Officer Coleman (30 minutes)

Morgan McLane is active in the HD community in Western Pennsylvania. He co-founded Barbara Lee’s Fast Track to a Cure for Huntington’s disease, a fundraiser that has raised over $110,000 from 2006 to 2016. Morgan was inspired to educate police departments about HD when he heard the story of Dr. Tomasi, a man with HD who was detained overnight by police who believed he was intoxicated.

Officer Dave Coleman has worked in law enforcement for several years and has been a full-time police officer in Pittsburgh, Pennsylvania for three years. Dave and Morgan work together to educate law enforcement on HD in his area.

According to Officer Coleman, working in small-town law enforcement confers many benefits that can help families with HD. For example, HD families can benefit from knowing local officers and command staff when a crisis occurs. In a small town, officers can work with citizens to develop a plan or strategy in the event of a crisis and often have better documentation of what to expect in certain HD households. In his words: “The more we know going into a situation, the better.”

After a series of questions, the presentation closed with a reiteration of how education and communication between law enforcement and the HD community can lead to an effective and mutually beneficial relationship.

  1. Resources referenced in this presentation and made available by HDSA:

– The law enforcement toolkit, which includes a thumb drive containing a PowerPoint presentation used to educate law enforcement on HD. This toolkit can be used by members of the HD community to educate law enforcement in their local area.

– The Caregiver Toolkit for interacting with law enforcement. This toolkit is a resource for families. It explains how to handle the behavioral symptoms of HD, and provides suggestions for interacting with law enforcement.

– The HD profile card, which is carried with the person who has HD. It can be given to law enforcement to bring them up to speed.

– The medical bracelet, standardized by HDSA. Most medical bracelets have the name of the condition, such as “diabetes”. The HDSA-standardized bracelet contains the patient’s medical information and family contact information. It can easily be shown to law enforcement.

For more information on these resources and how to access them, please contact Doug Schulte. He is available at the following email address to answer your questions, and he asked that you specify that the message is for him:

Further Information:

The recording of this presentation:

The presentation slides:

HOPES Mobile Resource for Law Enforcement Education:

Further information on PERT: