Research for Social Change

Theories and Models:

Gentle Support Coordination

This knowledge area represents the philosophical and practical depth of NOIRE's vision for transforming support coordination from a service management function to a relationship-centered practice that honors human dignity, fosters companionship, and promotes meaningful community participation. The KAM advanced the idea that support coordination is a distinct service model separate from case management, and secondly proposes a model and theory of support coordination that is rooted in the Gentle Teaching framework.

The Voice of Support Coordination

Despite occupying a central role in the developmental disabilities systems of 48 states, SC do not have a voice in program or policy development and are not well represented in the disabilities literature. As a result, the NOIRE Research Center on Intellectual and Developmental Disabilities is guided by the belief that Support Coordination is the most critical component of the HCBS system. It is the expressed aim of the Research Center on IDD, through its SC Knowledge Area, to highlight the significant role that support coordination plays within the HCBS system and bring the voice of support coordinators out of the shadows.

The Voice

Support Coordination: The Leverage Point

Leverage is everything. Having leverage and how that leverage is used makes the difference when trying to change people, things, processes, and systems. Leverage points, according to Donella Meadows, are "the places within a complex system where a slight shift in one thing can produce big changes in everything. Support coordination represents the leverage point in the home and community-based service system. Support Coordination plays the most significant role in the implementation and functioning of the Home and Community-Based Waiver Service system. As a conduit between individuals in need of support and the organizations and systems providing support services, the role of support coordinator is the leverage point at which system change can be most effectively achieved.

Deeper Dive

The SC Landscape

Preliminary results of an ongoing nationwide survey of support coordination services provide a brief glimpse into the landscape of this critical component of the HCBS system.

Arizona: Ranked the number one DDD system in the country by ANCOR in 2019, the Arizona HCBS system, through its 1115 demonstration Project, ALTCS, supports approximately 48,000 people across 22 counties. Support coordination in the state of AZ is provided through the State Department of Economic Security's Division on Developmental Disabilities. Based on 2019 numbers, there were 953 support coordinators employed by DDD, covering the entire state of Arizona's 114 square miles and its 22 counties, which are divided into five districts: Central, Eastern, Southern, Western, and Northern. Similar to the challenges faced by SCs across the nation, SCs in the Grand Canyon State face high rates of attrition, higher-than-average caseloads, and challenging working conditions. The most common hurdle expressed by SC's is a familiar refrain; the high numbers of people and the increasing levels of paperwork make the role unsustainable.

New Jersey: New Jersey's IDD system was ranked thirty-eight by ANCOR in 2019, and Support coordination in the Garden State, by contrast, is provided by over 156 independent agencies that cover 21 counties over considerably less distance, with NJ coming in at about nine thousand square miles. SCOs in New Jersey must support a minimum of 60 individuals, or they may not continue to operate. New Jersey's HCBS system supports approximately twenty-five thousand people.

Vermont: Ranked number three by ANCOR, and similarly to Arizona, Vermont has incorporated its 1915 (c) HCBS waivers into 1115 (c) Demonstration projects. SC services in Vermont are provided through the state Medicaid plan, as opposed to being an included service under the waiver. SC services under this model are delivered through independent agencies called Designated Agencies (DAs) or Specialized Service Agencies (SSA), that are not exclusively support coordination providers.

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Innovation

Perspectives

Early Forms

Separate and distinct from Case Management, Support coordination emerged because traditional case management, despite various reforms, remained anchored in professional control and system-centered thinking. Support coordination represents a fundamentally different paradigm that required new competencies, organizational structures, and evaluation methods.

Deeper Dive

A New Frontier

Building on the work of Davis (2018), Bogenschutzm, Dinora and Johnson (2019) highlight the sparse research on case management, and more importantly the absence of the voice of the support coordinator. Parallel to the findings of Davis (2018) Bogenschutz et al (2019) reached the same conclusion from their nationwide reach as Davis (2018) in his focused look on Supports Coordination in PA, both concluding that the over emphasis on regulatory compliance and inadequate wages were among the challenges prohibiting more effective supports coordination.

Deeper Dive

The Effectiveness of Scale

Columbus Organization has become one of the largest support coordination service providers in the state of Florida and ranks among the largest in the country. Though data and research on support coordination organizations is scant, there are a handful of multi-state agencies providing support coordination services to participants in the Home and Community-based waiver program. Private Equity firms are also contributing to the scope and scale of human services organizations. Most HSO's including support coordination organizations, are state-specific organizations serving their immediate area. While the growth and scalability of a proven model can be beneficial, it raises a critical question in this environment: Does being the largest service provider ultimately hinder or benefit the human service industry, particularly in support coordination? Who benefits? Who loses? NOIRE examines the thinking behind scaling up in Human service organizations.

Deeper Dive

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