Leverage is Everything

On average, few areas of a person’s life are outside of the realm of support coordination responsibility. Suppose a recent graduate is looking for housing, employment, a new health provider, opportunities for post-secondary education, or venues for social engagement or life skills training. In that case, it is generally the support coordinator who assists with locating providers or organizations, making connections, and engaging in observation and monitoring to ensure that the service or opportunity is meeting the needs and having the desired impact on the person's life. What this means is that the SC has a ground level view of the importance first of a coordinated effort, secondly the landscape of service provision and opportunity third what is missing from the service system and lastly as a vital member of the individual support team the SC has the role of advocate whereby they can engage the system at is most fundamental level how people think and process the experience of IDD and how to enhance that experience for maximum level of potential in the lives of the people the system was designed to support. There are few people closer to a comprehensive view of how the system works, or for that matter, how it does not work. Direct support professionals in residential settings have a unique perspective. DSP in the day program has a perspective. Staff who provide support to employees or offer job skills development have a presence. Each role from each service sector brings a perspective to the table of discussion. However, it is the support coordinators who engage with and coordinate across all subsystem subunit boundaries for the betterment of the individual's life. It is that inter-relational ship and connectivity inherent in the SC that makes it the leverage point in the system.

The literature on case management is relatively robust (Holloway, Oliver, Collins, and Carson, 1995). The academic footprint of case management literature demonstrates that case management as an intervention is used across a wide variety of service sectors, from homelessness (Marshal, Easton et al., 2024) to HIV care (Peck, Issarow, Isago et al., 2024), Covid-19 management, Stroke survivors (Saragih et al., 2023), Suicide attempters (Norimoto et al., 2020), and Student Retention (Dills & Deaver, 2024). Other common areas of case management as an intervention include mental health and addiction treatment, hospitals, and a wide range of community service programs, such as insurance navigators and workforce readiness initiatives. Social workers are the most commonly recognizable title or role of the case management spectrum. As Davis (2018) points out, case management relevant to the field of intellectual and developmental disabilities is sparse to nonexistent. The lack of literature or the absence of a voice supporting coordination in the field of IDD services, namely the home and community-based service system, should not in any way be taken as an indicator of its irrelevance. This is an under-researched area. Especially considering it is the cornerstone of a system where $ 9 billion was spent supporting its program participants, according to the most recent data provided by the State of the States on IDD services Report, conducted by Kansas University and funded through the Administration on Community Living. Support for coordination in one form or another is present in each state-managed HCBS waiver program and is the primary component responsible for making connections between service providers and service recipients. Support coordination is also the mechanism through which HCBS services utilization is monitored and tracked, as well as the most consistent direct contact for ensuring the health and safety of program participants.

All systems, not just the employees within them, but systems as a whole, reflect changes in behavior, which is why it is critical to identify the right leverage point. The leverage point may be far removed from the root problem, and the most obvious leverage point is generally not the right one (Meadows, 1999, 2008; Sinnamon, 1990). As to leverage points. Donella Meadows' treatise on systems thinking demonstrates that systems operate through and are based upon paradigm thinking, the process involved in the creation of the system or organization.  The HCBS system, specifically where support and care for people who experience IDD are concerned, has been in place for several decades, which means there has been ample time to understand not only how the HCBS system behaves but also how the subsystem of support coordination behaves. The intersection or interrelatedness of their key stocks and positive and negative feedback loops for many was the apparent place of intervention to change the system, where there was a desire for and an understanding of the need for change, particularly in regulatory rules, numbers, finances, costs, and expenditures, along with the related feedback loops. However, the most effective area for change is at the level of paradigm (Meadows, 1999, 2008). Or mindset. It is from this mindset or paradigm that culture, rules, and goals, among others, have their origin (Meadows, 1999). The prominent place at first glance would be macro-system level leadership. These are the deciders, right, CMS, the regional and Statewide Directors of Departments and Divisions of Disability services around the nation. This is the most obvious place for implementing a change initiative. It is also the place that is the most resistant to change. The actual leverage point is at the paradigm level of the support coordination sub-system. Leadership in support coordination is also an understudied and underrepresented unit of analysis in academic literature. Again, as critical a role SC plays in the HCBS, it is shocking that neither unit of analysis is more actively studied and researched.

Why the paradigm level of the support coordination sub-system? The mindset that governs support coordination is, first and foremost, the one that is more closely aligned with the theories that underpin the IDD service system. Secondly, it is also more amenable to change and flexibility. Change, ongoing change, and adaptation to change are inherent in the mindset of the SC subsystem.