With great anticipation the Arizona Developmental Disabilities Planning Council (AZDDPLC) recently released its most recent report “Stuck in the System: Searching for Better Criminal Justice interactions for People with Disabilities”. The purpose of the report authored by Dr. Diana Orem and Jason Snead JD., was to illuminate the obstacles and fears faced by people who experience disabilities when they encounter the legal system in Arizona. For some who may be unfamiliar with the phenomena of the intersection of neurodiversity, variations in form and function and the legal system fear may seem unreasoned. Yet the statistics demonstrate that people with IDD are overrepresented in the interactions with law enforcement and as Orem and Snead (2024) point out, once an encounter with law enforcement occurs people with IDD/A have a higher cumulative probability of arrest.  And we have all seen and heard in the news some of the most unfortunate incidents involving young men with either mental health challenges or who are a in behavioral crisis the scenarios do not end well. Those extreme cases aside, Orem and Snead’s work serves to keep the spotlight on an issue that is getting increasing attention both in the academic literature and on the ground as represented in the great work being done by innovative advocates and leaders in Texas and New Jersey and around the country who see first-hand the catastrophic impacts an already challenged system is having on the lives of a marginalized vulnerable population that is overrepresented in the legal system as not only suspect, but as “victim, witness…defendant, and incarcerated individual” (Orem and Snead 2024).

The case of Artie as presented in report highlights multiple gaps and opportunities for improvement in how our fellow citizens experience the legal system.  There are glaring gaps in knowledge which includes but is not limited to how to identify a person who may be neurodivergent at first contact with law enforcement or during appearance in court. There are gaps in communication not only between court and law enforcement personnel and the neuro divergent person but between department and components of the legal system and community and governmental agencies responsible for the support and care of vulnerable populations.

Through the well-presented case study and data from interviews with key personnel the authors touch on the main points that the effectiveness that law enforcement can have is limited in an environment where there is little coordination between system components both within and external to the legal system. Secondly, the absence of a consistent statewide process for helping people with IDD navigate through the legal system creates the potential for an already challenging and scary experience to become much worse and considerably more traumatic.

The data gathered and presented by Dr. Orem and Mr. Snead leads to several recommendations that could have a transformational impact on not only the functioning of a system that touches the lives to one degree or another of almost all Arizonans but also on the most vulnerable of our fellow citizens. The recommendations included but are not limited to comprehensive and ongoing disability awareness training for court and law enforcement personnel, collaborative partnerships between disability advocates, law enforcement, the courts, service providers, families and government oversight bodies, and robust transition planning to ensure successful reintegration into the community for individuals with IDD who have been incarcerated.

What stands out to me about the report is that when added to the growing body of literature that looks at the interactions between people with IDD and the legal system and the experience of people with complex needs such as IDD/A and co-occurring mental or behavioral health needs, two very stark and clear points are illuminated about the current state of the human service delivery system in general but specifically as it pertains to people who experience intellectual and developmental distinctions.

The first is that the current system was not designed with the type of complexity of human needs that is presented every day. The human service delivery system is extremely siloed and fragmented. This fragmentation leads to gaps, inconstancies inappropriate levels of care and poor outcomes for our most vulnerable citizens. That said one of the most important recommendations put forth in this report is the need for a coordinated collaborative approach that brings together decision makers, transformational leaders and self-advocates and end-users from each part of the system to put aside their departmental and system specific agendas and work towards creating a collective impact through an integrated care system.

The second point rising to the top of this growing body of literature is a concept that has been known for decades but never addressed by those in position to create, design, develop, or redesign systems of support. The structure of the human service delivery system, particularly the legal system and the home and community-based service system is incongruent with the functions and the ideological premises that are at the root of supporting and meeting the needs of human beings. Person centered planning, self-determination, self-advocacy, everyday lives, supported decision making are all systems thinking ideas and model of support. There will always be short and limited gains when trying to implement a systems thinking principle through a bureaucratic organization structure.

Systems are the result of paradigms and paradigms drive the rules the function and the structure of systems. The current system was built upon outdated paradigms, such as the medical model of disability or the moral failing of a person as the cause of addiction. Our ways of thinking about people, their needs, and their social, behavioral, physical or psychological differences have evolved. Our paradigms…our way of thinking about disability, addiction, mental/physical health, and culture have moved into the systems age. Yet the structures of the systems and the organizations through which we meet those human needs have remained in the machine age. We must come together collectively and redesign this bureaucratic system into a complex adaptive system that can evolve with and in anticipation of our needs. To quote Donella Meadows “People who manage to intervene in systems at the level of paradigm have hit a leverage point that totally transforms systems”. The work of Orem and Snead in this timely and significant report published by the Arionza Developmental Disabilities Planning council is a major step in the direction of paradigm level intervention. Well Done Dr. Orem and Mr Snead. Well, done!! Keep the heat on ‘em.