Research for Social Change

The Problem of Architecture: Why Human Service Organizations Struggle with Human Flourishing

One of the best quotes in my favorite movie, The Matrix, is when Morpheus tells Neo, "You're here because you know something. What you know you can't explain. But you feel it. You've felt it your entire life... That there's something wrong with the world. You don't know what it is, but it's there, like a splinter in your mind, driving you mad." In the early years of my career in the field of human services, there was a splinter in my mind that nagged at me constantly. I operated under the cloud of the feeling that something wasn’t quite right about the organizations in which I was working. There was an agonizing feeling that a disconnect existed somewhere between what I was supposed to be doing, meeting human needs, and the expectations that existed in the environment in which I was doing it. My human service career started in 1996 at a residential mental health program. From there, I developed and administered a domestic violence intervention program, which included recruiting volunteers, running a Courtwatch program, and establishing a countywide coordinating committee. I learned a lot in those roles, but that cloud of what I perceived as disconnectedness remained. Eventually, my career focused exclusively on supporting children and adults with intellectual and developmental disabilities and/or autism. Still, that tormenting feeling that something was out of alignment between what people needed and how those needs were being met grew, and it began to include not just the needs of program participants but also those of people who worked in the organizations. The splinter in my mind was this disconnect or misalignment that I could feel and see but could not yet name.

Disconnect?

Working across three states, it was clear that the disconnect, as I framed it, was pervasive. It was not simply a company A or company B issue. Although the IDD service system was no longer a one-size-fits-all affair like the institutional period, its replacement with the Home and community-based services system (HCBS) seemed to be a system where there are 3 sizes available, and everybody needed to get the closest fit possible and make it work. For some people, this worked perfectly. For some other people, it may have been a little uncomfortable and not exactly the perfect fit, but it would do. Over time, however, there was an ever-increasing group of people for whom none of the available sizes were even close to appropriate. That group of people was left out in the cold. I struggled to identify the precise disconnect or the root cause of the disconnect, and I couldn't help thinking there must be a better way.

Looking across the surface of the home and community-based services system and the organizations and groups that make up that system, one can point to many examples of improved outcomes and the rich, full lives that may not have been possible in the previous systems, specifically institutionalization. There is no shortage of companies that provide supported employment, congregate group living, independent living, and places to go and things to do during the day and evening for people who experience IDD and are registered in the HCBS system. But to dig deeper and examine what lies beneath the successes that float to the surface, a different picture is revealed. Yes, there are many success stories and examples of changed lives. But if you sit in enough family advisory committee meetings and attend enough workgroups and observe enough lives lived and talk to enough direct support professionals, frontline leadership, and support coordinators, those closest to ground level, the message becomes clear that those who live a successful life and are flourishing tend to be well connected, supported, have an active family, and an active, engaged, determined support coordinator at the minimum. If any one or more of those components are missing from a person's life, the outcomes change dramatically. The question is why? Why are the outcomes so different when you factor out specific areas of support, such as an active family/guardian or dedicated, committed support coordinators and direct support professionals? We know everyone is an individual and things will vary, but within, say, the same organization where the mission statement and vision apply across the agency, why is there such a disparity in outcomes and levels of quality of life and human flourishing? Why, if person-centered planning and everyday lives, and capabilities, social role valorization, and charting the life course and trauma-informed approaches are the language and theories used across an agency and advocated by an entire system, why are there not more success stories across the need spectrum? Why is the burnout rate among direct support professionals and support coordinators increasing every year? Why are the statistics of abuse, neglect, and exploitation of people with IDD and autism holding steady, 6-10 times the rate of the wider population over longer periods of time, by more people? Why aren’t more people thriving and flourishing in this human service delivery system? There is absolutely no shortage of committed and dedicated people and professionals providing support. There is no shortage of agencies and innovation. Yes, there is a shortage of money, but money is not the issue, and money will always be in short supply. There is a deeper, more fundamental issue at the root of this, which I had once termed disconnectedness or brokenness.

Brokenness was not an accurate description. Broken says disrepair, something does work as it was intended to work. Broken means something has been fractured or damaged and is no longer in one piece or in working order. This was not the case with the HCBS system or the human service system writ large. That was not the case with the organizations that supported people with IDD or others human beings in need. That the organizations were experiencing a disconnect is true, but not ‘brokenness’. They were, in fact, doing exactly what they were designed to do. They were doing things right. But there was a deep fundamental disconnect between what they were designed to do and what they wanted to do. The gap between doing things right and doing the right things.

At NOIRE we have defined this ‘disconnectedness’ more formally as the Incompatibility. The Incompatibility Thesis. It is the idea, the fact, that bureaucratic organizational structures and mindsets were never designed to encourage, support, or provide for human flourishing, thus incompatible with the provision and delivery of human services. Traditionally structured bureaucratic organizations were designed to manufacture products at scale as quickly as possible for the least possible cost. Bureaucracies and the related scientific management theories that permeate them were designed for efficiency and control. They are by nature authoritarian environments structured in a hierarchical fashion, where those at the bottom of the hierarchy were formed into a cohesive nameless faceless unit that carried out a set of processes that were rigorously structured for the goal of maximum productivity through efficiency. Factoring out for individuality and creativity. Human services, the act of meeting the needs of human beings by contrast, is a complex relational process where people are seen as individuals with individualized needs and flourish in interdependent environments where they feel safe, valued, can demonstrate valuing towards others, and be engaged. On the whole, human needs cannot be standardized or routinized for maximum efficiency. Bureaucratic structures and the mindset of bureaucracy and it’s related management concepts are completely antithetical to the concepts supporting human dignity and flourishing. The two are incompatible. They don’t match. They are not a good fit for each other.

Why Does it Matter

Understanding the misalignment between an organization's structure and its stated function is critical for support coordinators, county and state administrators, and organizational leadership, but more importantly for people with IDD and their circle of supportive others, who are reliant upon this system to support their desire for everyday life as they define it.

To name a thing is to be able to deal with its nature and make corrections as needed. How we think about people determines how we build organizations that are meant to help them. Bureaucracies were built to produce as much as possible for as little as possible. Nothing in that speaks of meeting the needs of people, internal or external to the organization. Knowing this allows those inside the organization to re-evaluate their structures so that they are in line with the goals related to meeting the needs of human beings. Understanding the importance of having an organizational structure that is aligned with its purpose from the outside of the organization allows for better decision-making when looking for a provider or an organization to meet a specific need related to everyday life.

As a support coordinator, this knowledge could not be more critical to the act of working across boundaries and being an advocate for the member, and functioning as the conduit that brings systems together and out of their silos.

As a county or state-level administrator, understanding the importance of alignment between form and function is crucial because it shapes the criteria used to approve new providers and re-evaluate existing providers. It shapes the design and focus of quality assurance and oversight processes and helps in the redesign of funding and reimbursement structures that are geared towards quality of life measures.

As an employer or staff development coordinator, understanding the importance of the structural design of the organization and its ability to pursue its mission and vision helps to inform the type of learning that goes on inside the organization and how supervision and staffing are executed.

The Takeaway

What is important in this current iteration of the home and community-based service system is asking the foundational questions. Are we satisfied with doing things right, or are we interested in doing the right things? Are we interested in learning how to measure human flourishing and quality of life and redesigning our process around those measures? Or are we satisfied with counting the easy stuff? The world moved into the systems age decades ago. Out thinking about people, in large part, has evolved into systems age thinking. Our organizations and organizational mindset have remained stuck in the past in the age of industrial machine age structures and an administrative mindset. As we are rapidly moving into the age of robotics and AI, the organizational structures must shift. It starts with tough questions, tough conversations, and change. NOIRE stands at the vanguard. Join us. We’re ready. Are You?

ABOUT THE AUTHOR

Dr. Stephen T. Davis is the Executive Director of the National Organization for Interdisciplinary Research and Evaluation (NOIRE), a think tank focused on transforming intellectual and developmental disabilities services through interdisciplinary research, social justice principles, and Gentle Teaching frameworks.

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