Forming and supporting circles of support for people with intellectual disabilities – a comparative case analysis

ABSTRACT

Background

Building Circles of Support is an innovative strategy for developing natural support networks. This study explored some of the ambiguity in the conceptualisations, operational elements, and perceived outcomes of Circles of Support programs.

Method

A comparative case study of three Australian Circles of Support programs was conducted. Data included document review and qualitative interviews with 27 key stakeholders. Qualitative analysis of the data from each program was analysed using categories of the program logic as a conceptual framework, followed by cross-case analysis to identify commonalities and differences.

Results

Findings show conceptual variability between programs, which shared similar overarching intents but differed in program, strategies, target population and outcomes, which were shaped by the missions of the organisation of which they were part.

Conclusion

Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities.

KEYWORDS:

• Adults with intellectual disabilities
• informal support networks
• interventions
• program design

A substantial body of evidence establishes that positive social relationships make a significant contribution to the health and wellbeing of all people, both with and without intellectual disabilities (Hong et al., 2018; Roll & Bowers, 2019). Relationships with family, friends, neighbours and acquaintances, based on personal ties rather than payment are often referred to as informal social networks (Bigby, 2008; Lipold & Burns, 2009). This kind of network provides a range of emotional and practical support that might also extend to assistance to advocate or manage formal relationships with organisations or service systems (Horowitz, 1985). Informal networks are particularly important to people with intellectual disabilities who often require support to self-advocate, develop social skills, participate in community activities, and engage with others (Bigby et al., 2018; Duggan & Linehan, 2013). Furthermore, individualised funding models and the growing reliance on the markets to deliver disability support services, together with the growth of consumer-directed care in mainstream services systems, such as health, has shifted the power dynamic from service providers and placed it in the hands of service users. For many people with intellectual disabilities this shift has arguably increased the significance of informal networks for navigating and coordinating formal support (Elder-Woodward et al., 2015).

Research has consistently found that many people with intellectual disabilities are socially isolated with few others involved in their lives (Bigby, 2008; Forrester-Jones et al., 2006; Kamstra et al., 2015; Van Asselt-Goverts et al., 2015; Verdonschot et al., 2009). Their social networks are small and dense, often comprised only of family members, peers with intellectual disabilities and paid staff. For example, in a review of international research, Verdonschot et al. (2009) found that social networks of people with intellectual disabilities averaged 3.1 members with at least one of those a paid staff member. Furthermore, Kamstra, and colleagues’ (Kamstra et al., 2015) study of the social networks of 205 people with profound intellectual disabilities living in group homes found, on average, they had contact with family and friends 24.4 times a year, 58.2% had contact (either face-to-face or phone call) less than once a month and 29.5% had contact only once or twice a year.

Research on social network development suggests that many adults with intellectual disabilities struggle to build their own networks and often rely on assistance from family members to get people involved in the person’s lives (Kramer et al., 2013). Bigby (2008) found for example, that none of the 24 people with intellectual disabilities who had resettled from institutions into the community had formed new friendships with people in their local communities in the five years since they moved.

The impoverished social networks of people with intellectual disabilities have been attributed to personal constraints, such as limited social skills or restricted opportunities to participate in community-based activities, and structural constraints such as discriminatory public attitudes (McVilly et al., 2006; O'Brien et al., 1997). Scholars have concluded that adults with intellectual disabilities may need formal strategies to assist in building social relationships to complement naturally occurring processes. Yet people with intellectual disabilities report that neither families nor service providers understand the significance of informal relationships and fail to provide the practical support necessary to form and maintain such relationships (McVilly et al., 2006).

Various formal strategies to build and maintain informal social networks for people with intellectual disabilities are reported in the academic and grey literature. These include, for example, self-advocacy groups for persons and families, peer support for employees, befriending, and mentoring schemes (Bartnik, 2008; Bigby et al., 2018; Etmanski, 2009; Hillman et al., 2013; Mansell & Beadle-Brown, 2004; Neill & Sanderson, 2012; Ratti et al., 2016; Sherwin, 2012; Ward et al., 2013; Wilson et al., 2017). Among these the most prominent is the concept of circles of support. The literature includes mostly unpublished reports and personal stories presenting anecdotes and desirable outcomes of various models for organising circles of support. However, there is much ambiguity over the conceptualisation of Circles of Support: what constitutes a circle of support, what forms do they take and what processes are used to build them. Furthermore, there is relatively little empirical evidence that underpins claims of success or indicates for whom and under what circumstances Circles of Support initiatives achieve objectives, or what input and practice skills are required for success.

Circles of support

The concept of Circles of Support features prominently in network building initiatives in North America and Australia. Over several decades, the term has been used loosely to describe a wide array of strategies to build and maintain informal social networks for people with intellectual disabilities. In this study, we focus on “Circles of Support” as described by Macadam and Savitch (2015), according to which a Circle of Support is a strategy to formalise support embedded in informal networks. At the most general level, this involves groups of people coming together voluntarily, with varying levels of formality to support an individual through relationships of trust and intimacy (Macadam & Savitch, 2015). A range of functions and outcomes are attributed to Circles of Support in the academic and grey literature. These include circles being: an innovative way to sustain the continuity of care and support over the life of a person with intellectual disabilities (Neill & Sanderson, 2012); a forum to support decision-making (Nunnelley, 2015); a means of undertaking transition and succession planning (Bourke, 2009); a strategy to support families through tangible and expressive support (Lord & Hutchison, 2003); a natural mechanism for providing ongoing and unfunded support (Etmanski, 2009; Neill & Sanderson, 2012; Wistow et al., 2016); and a means of building the community capacity to welcome people with intellectual disabilities as respected members (Neill & Sanderson, 2012). The breadth of claims attributed to Circles of Support is captured in the following quote from Neill and Sanderson (2012, p. 4).

… building a supportive network of allies around a person creates a powerful mechanism for implementing change in that person’s life circumstances, change in the way services interact with that person, and a fundamental change in the way communities receive and regard people who require support.

In essence, formation of Circles of Support are perceived as supporting disability policy objectives such as promoting self-determination, social inclusion, and choice and control for people with intellectual disabilities as well as building the capacity of communities to be inclusive. An extensive grey literature describes the outcomes of various models for organising Circles of Support primarily through descriptive reports and personal stories. However, to date, there has been limited formal evaluation of the ways that Circles of Support work in practice and of the organisational strategies necessary to develop and support them (Bigby & Araten-Bergman, 2018; Wistow et al., 2016). As a result, there is little clarity about the processes or resources necessary to develop Circles of Support and limited evidence about outcomes achieved, which is likely to hinder communication between stakeholders and impede the design of new services (Bigby et al., 2018). In the context of individualised funding schemes such as the National Disability Insurance Scheme (NDIS) in Australia, these factors may make it difficult to make the case for allocation of individualised funding to build or maintain a Circle of Support.

Study aims

The study reported in this paper was part of a larger community-based project that aimed to produce an evidence-based framework and benchmark principles for Circles of Support programs (National Resource Centre for Circles of Support and Microboards, 2021). This paper reports the findings from a comparative case study of three Australian Circle of Support programs. The analysis was underpinned by a program theory-driven approach (Chen & Rossi, 1983), which seeks to capture basic program components and to provide insights into what works, for whom and why, and hence the mechanisms through which changes occur (Rossi et al., 2018). The study aimed to make explicit each programs’ logic model and “theory of change,” hence to provide insights into the differences between program objectives, inputs, activities and outcomes by comparing and contrasting programs. Key questions were: (1) How do Circles of Support programs conceptualise aims and target population? (2) How do programs support the formation or maintenance of Circles of Support? (3) What facilitation strategies, staff practices and resources do programs use to form and maintain Circles of Support? (4) What are the outcomes of these Circles of Support programs?

Method

Design

A case study approach lends itself to gain an in-depth appreciation of a phenomenon and its context (Yin, 2003). For this study, we used a comparative case study design that allowed us to explore the components and context of different Circles of Support programs, and then to understand key differences and similarities between programs by comparing them. For each case study, the program logic models and theories of change were identified (Rossi et al., 2018). This approach assumes that programs are “theories incarnate” and have a “Theory of Change” underpinning how and why program activities facilitate change (Weiss, 1998). Similarly, this approach focusses on how key stakeholders experience and respond to programs within specific contexts (Rossi et al., 2018).

This type of analysis begins by identifying the “program logic model”, which graphically illustrates each program’s basic components such as target population, purpose, activities, resources, outcomes and context, followed by an analysis to link these together to make explicit the program’s “theory of change” – a comprehensive description and illustration of how and why a desired change (outcome) is expected to occur as a result of the program’s activities (Clement & Bigby, 2011; Funnell & Rogers, 2011; Rossi et al., 2018). Then the synthesis of patterns within and across multiple programs produces more generalised knowledge about links and mechanisms, particularly how program components work, for whom, in a specific context (Goodrick, 2020).

Data included program documentation and qualitative exploration with key program stakeholders including staff and participants, to identify the different Circles of Support programs’ basic components (program logic model), and make explicit the programs’ “theory of change” that links together the programs’ activities and outcomes.

The study was approved by the Human Research Ethics Committee of the University, and all participants provided informed consent to participate. All data, relating to the organisations and participants involved have been de-identified.

Recruitment

Three Circles of Support programs that supported people with intellectual disabilities and their families were invited to participate in the study. They were located in three different Australian states and varied in size and focus. These programs were purposely selected by a panel of experts (members of the steering committee of the National Resource Centre for Circle of Support and Microboards) as well-established programs that were diverse in design and implementation (Palinkas et al., 2015). Initial contact with each program was made by a steering committee member, who provided information about the study to the program manager and invited their participation. If managers were interested, the first author contacted the senior manager in each organisation to seek their approval to participate. All three programs that were approached agreed to participate in the study.

Once an organisation had agreed to participate, managers circulated information about the study to key program stakeholders (staff, people with intellectual disabilities, families and circles’ members) via the mailing list and newsletter, inviting them to contact the research team if they would like to participate. This recruitment method protected past service users’ confidentiality and privacy, allowed participants to self-identify, gauge their interest prior to contacting the research team and to share their experience voluntarily without coercion and/or inducements (Ellard-Gray et al., 2015). All programs participants that contacted the researchers were included in the study.

Data collection

Program managers provided an overview of the scope and operations of the program and access to program documentation. These documents included policy documents, factsheets, operational manuals, implementation reports, program descriptions, minutes and notes from meetings.

Semi-structured interviews were conducted with 16 staff members (five program coordinators; six members of organisations’ senior management; four support and development workers and one paid facilitator). A semi-structured interview protocol derived from the evaluation literature was used to facilitate an understanding of the program’s logic model and its “theory of change”. In addition, the interview was designed to uncover stakeholders’ experience in implementing the program and their view of the outcomes. Special attention was given to exploring the mechanisms and contextual factors that facilitated or constrained the operation and intended outcome of the program.

A further set of semi-structured interviews were conducted with 11 program participants (five parents; two people with intellectual disabilities; two siblings; one friend and one community member). These interviews sought participant reflections on their experience of the circle program and their view of the outcomes.

Data was collected between December 2016 and April 2017. All interviews were conducted face to face by the first author and lasted between 45 and 90 min. They were digitally recorded and transcribed in full.

Data analysis and synthesis

We used Framework analysis (Srivastava & Thomson, 2009) to code the interview transcripts and documents. A coding matrix was developed consisting of a series of columns (program components) and rows (interview cases). The data in each cell was systematically summarised and reduced, to allow analysis by case, category and theme, while retaining links to the original data.

A separate case study for each program was developed, focused around identifying the program logic model and “theory of change.” The categories of the WK Kellogg Foundation (WKKF, 1994) program logic were used as the conceptual framework. The framework detailed the program context and components, which are described in the first column in Table 1. Finally, a comparative case analysis was conducted to compare and identify commonalities and differences between programs and to use the accumulated case knowledge to reach a more general understanding that went beyond specific context and time (Yin, 2003).

Table 1. Program logic and core components of each circle of support program.

Context	Program 1	Program 2	Program 3
Organisational mission	To ensure people with intellectual disabilities are supported and safeguarded by their family across the lifespan	To provide people with intellectual disabilities support and opportunities to do the things they want to do with the people that matter to them in accepting and inclusive communities	To work with vulnerable people and their families to live a valued and meaningful life in their communities
Aim	To provide guidance and support for families to develop and maintain their own Circles of Support. To enhance and maintain the capacity of the family to provide support across the person's lifespan.	To develop and provide “proof of concept” for a Circle of Support model. Build and strengthen the capacity of the individual’s informal supporter to provide meaningful support that assists them to live a life of quality as part of an accepting community.	To provide guidance and structure for families to develop and maintain their own Circles of Support. Build and sustain the capacity of informal network members to support persons with disability and their family.
Intended outcomes	Maintain the family capacity to provide ongoing support and advocacy Families Reduce caregiver burnout; enhance family well-being; mechanism for decision-making, PCP and succession planning. People with intellectual disabilities Improve quality of life and continuity of support across their lifespan. Community Enhance knowledge, change attitudes and improve capacity for being involved and supporting people with intellectual disabilities and their families.	Build and maintain a person`s informal support network. People with intellectual disabilities Develop and enhance informal relationships and support network; enhance social inclusion and quality-of-life and choice and control. Community Build more inclusive communities.	Maintain the family capacity to provide ongoing support and advocacy. Families Prevent caregiver burnout; enhance family well-being mechanism for person-centred and succession planning People with intellectual disabilities Enhance social inclusion quality-of-life choice and control. Community Enhance knowledge, change attitudes and capacity to being involved and support people with intellectual disabilities and their families.
Target population	Families of people with intellectual disabilities. People with intellectual disabilities with existing social networks.	People with intellectual disabilities with existing or limited or no informal networks.	Families of people with intellectual disabilities. People with intellectual disabilities with existing social networks.
Primary strategy	Provide professional structured process to introduce formality into existing informal networks.	Provide information to care providers, people with intellectual disabilities and community members about the Circle of Support model. Initiate and provide a professional structured process to build and strengthen informal support networks for people with intellectual disabilities and to provide ongoing facilitation and coordination.	Provide a structured process to introduce formality into existing social networks and to assist forming circle of support groups.
Activities	Provide information on the Circle of Support model and its application. Preparation phase: relationship mapping, supporting the invitation process and agenda planning. Facilitation phase: facilitate introduction night, first circle meeting, and further meetings until circle members can take on the role. Support, guide and supervise facilitator if necessary, during the first year.	Promote involvement by providing information about Circles of Support to people with intellectual disabilities, care providers and support workers. Internal recruitment: introduce the Circle of Support concept to the organisation’s support coordinator, identify potential participants, encourage referrals. Relationship mapping and initial evaluation of focus person’s informal network. Three distinct pathways depending on the person’s existing informal support network. For people with no support network: coordinator engage to build a relationship with the person, recruit existing members of the person’s informal support network, find new supporters, build relationships and facilitate regular meetings to engage the person. For people with at least one committed member in their support network: coordinator works with the primary supporter to undertake, relationship mapping, new member invitation, person-centred planning (PCP), organise and facilitate regular meetings, chair meetings, give guidance and monitor action items. For people with an existing support network: coordinator provide, information, guidance and supervision, relationship mapping, circle invitation, PCP and agenda development for the first meetings, guidance and supervision for primary supporter and family in the first few meetings.	Provide information on circles of support. Preparation: (2 home visits) provide support and guidance, relationship mapping, develop invitation strategies and materials, provide support and guidance for PCP and agenda development. Facilitation: facilitation of the first two circle meetings, explaining and guiding members to fulfil essential roles (facilitator, note-taking), support and guidance for facilitators in the first two meetings.
Program input: Professional knowledge and skills	Knowledge of disability service environment, PCP, group facilitation and Circle of Support model development and delivery. Communication skills, sensitivity and respect for diversity.	Knowledge of disability service environment, PCP, group facilitation and circle of support model development and delivery. Communication skills, sensitivity and respect for diversity.	Knowledge of disability service environment, PCP, group facilitation and circle of support model development and delivery. Communication skills, sensitivity and respect for diversity.
Program input: Time and energy	10-15 h of professional involvement in the preparation phase and 2-3 h for each meeting in the first year of operation	Time depends on the person’s existing informal support network: For people with no support network: preparation phase 25 h and then 10 h per meeting (plus any additional tasks allocated at each meeting). For people with at least one committed member in their support network: 15 h preparation phase and 8 h per meeting (plus any additional tasks allocated at each meeting). For people with an existing informal support network: 10 h preparation phase and 2-3 h per meeting.	15-30 h of professional involvement.
Program input: Personnel	Two employees with expertise in circle of support development. Flexible hours determined by the number of interested families.	Part-time program coordinator – one staff member with expertise in circle of support development. Supervision of senior management.	One staff member with expertise in circle of support development – flexible hours determined by the number of referrals.
Funding	Block funding through State Government	Block funding through State Government and philanthropic grants	Facilitation at an hourly rate as ‘support coordination’ based on the quote from the Circle of Support coordinator For people with intellectual disabilities: individual funding NDIS plan For families: individual funding from government carer support program, Fee for service
Outputs: Number of circles support developed and maintained	No data collected. Staff estimated approximately 100 Circles of Support initiated over 36 years. No data on their sustainability after service withdrawal.	Nine Circles of Support launched over two years out of which three were formed and operated for at least six months. One circle continued its operation after the withdrawal of the circle of support coordinator.	No data collected. Staff estimated approximately 60 circles were initiated over 12 years. No data on their sustainability after service withdrawal.
Outputs: Documentation	Fact sheets for families, facilitators Supporting documents and templates for families Circle of Support and succession plan workshops	Circle of Support information sheets Circle of Support website Training materials including, participant narrative videos; training curriculum and guide; organisational documentation; Circle of Support coordination job description, Circle of Support development protocol	Fact sheets Supporting documents templates Organisational documentation Circle of Support plan form for funders and families
Outcomes	Person with disability Increased quality of life, sense of belonging, social inclusion. Strengthened communication and relationships. Increased informal support to achieve desirable goals such as: moving out of family home, securing open employment, pursuing interests and hobbies in the community. Families Increased number of people involved in life of the person with disability. Increased practical support and informal networks to provide sustainable and long-term support. Assistance in decision-making. Decreased burnout. Increased family social capital. Circle members Increased community understanding of rights of people with disability. Increased opportunities to be involved in the lives of the person with a disability and their family. Sense of belonging, purpose and meaning.	Person with disability Support to achieve desirable goals: moving out of family home, securing open employment, pursuing interests and hobbies in the community. Increased opportunity for socialising & friendships, self-determination, social capital, feelings of safety, advocacy support, wellbeing and self-worth. Families Increased social capital Increased family support Increased wellbeing and self-worth. Circle members Enhanced understanding of disability. Increased capacity to provide meaningful support Increased sense of social cohesion.	Person with disability Support in achieving desirable goals: Increased opportunity for socialising & friendships, self-determination, social capital, wellbeing and self-worth. Families Increased family support, succession planning and increased wellbeing. Circle members Enhanced understanding of disability. Increased capacity to provide meaningful support. Increased sense of social cohesion.

Findings

Table 1 summarises the program logic and core components of the three programs.

Circles of support as family or service business

The cross-case analysis showed that all programs had a similar overarching intent of sustaining informal support and the quality of life of the person with disability, but differed in their conceptualisation of Circles of Support and the functions necessary to operationalise them. The three programs were embedded in disability service organisations with missions that conveyed strong commitments to human rights, social inclusion of people with intellectual disabilities and the well-being of their families. Program 1 was part of an organisation with a strong mission to support families and this was reflected in the program logic. The program focused on supporting families to ensure continuity of informal support across the lifespan, with the rationale that if the family were well supported the person with disability would benefit. In this context, Circles of Support were conceived as providing a safety net for family members and assisting them in their decision-making to ensure their relative with intellectual disabilities lived a good quality of life in the present and future. Similarly, program 3 was embedded in an organisation that had a strong focus on support for carers through respite programs and support coordination for people with intellectual disabilities. Circles of Support were conceived by both programs as essentially family business, relying on the motivation and contribution of family and other informal network members to lead, develop and sustain circles. The roles of program staff were short-term and focused on building the capacity of the families to develop and run their own circles. Both programs relied on referrals or the expressed interest of families, thus targeting only people with intellectual disabilities who had an existing social network.

In contrast, program 2 was embedded in a disability support organisation with a broad mission of supporting people with intellectual disabilities and community development. The program logic of the circles program concentrated on people with intellectual disabilities rather than their families. The program actively reached out to people already supported by other programs in the organisation who might benefit from a Circles of Support and began by assessing the strengths of their existing informal network. In contrast to programs 1 and 3, the model adopted by program 2 allowed for isolated people, particularly those in supported accommodation without strong family support, or with little or no other forms of informal support to be involved and potentially benefit from the formation of a Circle of Support. This program perceived a Circle of Support more as service business with a much stronger and longer-term role for the professional program coordinator in initiating and managing circle development and ensuring its continuing functioning.

In this program (2), unlike the others, the role of the coordinator varied according to the person’s existing network and ranged from being a facilitator to social broker. For people with no or limited informal networks, the coordinator led the development of a network by identifying and strengthening existing, albeit often tenuous social contacts, and assisting the development of new relationships. This required significant and long-term resources, and its centrality to the program meant that when short term funding was exhausted the program was not sustainable.

Program governance, size and scope

Programs varied in scale and size, budget, staff, participant numbers, and hours of support offered. Program 2 was the only discrete program designed and funded to provide Circle of Support coordination. Although program 3 provided Circles of Support facilitation and coordination it was just one strategy the organisation used in its broader Person Centred Planning (PCP) services. The organisation regarded these Circles of Support strategies as billable hours of the Circles of Support specialists, which were met on a user pays basis, through an individual’s NDIS plan, a carer support program or privately. Similarly, program 1 was not funded either as a distinct program within the organisation but conceived as one strategy aimed at safeguarding and ensuring the quality of life for people with disabilities and their families.

Program inputs

Knowledge and skills: All programs identified similar areas of knowledge and skills for the coordinator. These include knowledge about the disability services system and the concept of circles of support, and skills in PCP processes and group facilitation. Personal attributes and skills such as commitment, values, listening, communication and person-centred thinking were also valued. Senior managers in all three organisations stressed the specialist skills required in forming a Circle of Support that differed from those required for other types of support coordination. Despite this, however, only program 2 employed a coordinator with a distinct role and responsibility for developing circles. Circles of Support coordinators in programs 1 and 3 also worked as general support coordinators but had no formal education or specific qualification and training on Circles of Supports. Similarly, only program 2 had a documented role description detailing the specific skills, values and characteristics required for the Circles of Support coordinator. Common to all programs were strong and charismatic leaders close to the operational aspects of the programs, and whose knowledge of participants illustrated the principles of equity valued by organisations, and the absence of social distance between staff and participants.

Staff time and energy: Many activities associated with Circles of Support rely on the availability of family or circle members and happen after office hours. Staff emphasised their flexibility in arranging their time according to the requests of people with intellectual disabilities, families and circle members. In all three programs, staff conveyed an extremely high commitment to the program and willingness to work beyond the boundaries of their budgeted time and role to promote circle activities. For instance, the organisation that managed program 2 estimated that staff contributed 80 unpaid hours to the program as well as tangible personal resources such as paying for circle members’ refreshments.

Places: In keeping with the philosophy of Circles of Support most program activities occurred in community spaces of significance to the people supported such as restaurants, pubs and circle members’ homes. Program 2 experienced a particular challenge in this respect if the person had no existing informal network members and when potential circle members met venues such as cafés, they expected associated costs would be covered either by the program or by the person. Costs such as these were not accounted for in the program budget, which often resulted in the coordinator paying them from her own pocket.

Funding: All the programs were in the process of rethinking budgets and calculating costs per participant hour to align their business models with NDIS individualised funding. Detailed budget information was not available, but the estimates suggest that these are small scale programs. Primary sources of income were small local government or philanthropic grants and state government disability support service funding. In addition, shared administration and cross-subsidisation of programs within organisations made it difficult to accurately identify program budgets, and sometimes boundaries between different programs were blurred. For example, in program 1 it was challenging for participants to distinguish between activities that were part of the general support planning and those part of the Circles of Support program. Some families attended the succession planning and documenting information workshops the organisation delivered, but it was not always clear whether these workshops were a separate or integral part of the circle of support development.

Program activities and processes

All three programs had structured sequential processes, commencing with providing general information, followed by a preparation phase, relationship mapping and facilitation. Processes reflected program aims, for example, whether circle development was perceived as family or service business, and differed by the degree of structure and flexibility accorded to coordinators. For example, program 3 had a predetermined package of support and coordination hours available at a set cost. In comparison in program 2, although having a very structured process, the length and intensity of coordinator involvement were determined by the length of time it took for the circle to mature. All activities in programs 1 and 3 were focused on supporting the family to do this themselves and in contrast to program 2 staff were not involved in direct recruitment of potential circle members or developing agendas and tasks allocated by circles.

Processes in program 2 were less linear than the other programs, and as already flagged depended on the person’s existing informal network. Whether for example, they had no or very few network members, a network but no members who were willing or able to commit to build and maintain the circle of support, or an existing network with strong and committed members. Thus the process included an initial evaluation phase where the coordinator assessed the person’s network and decided the appropriate strategy and goal for circle development. For people with no or very few network members, the coordinator’s activities included building a relationship with the person, searching and recruiting network members, facilitating the circle, and initiating opportunities for others to socially engage with the person.

Output

None of the programs had formal data on program outputs nor did the programs include evaluation in their model to determine program effectiveness and costs. In this study, all data on outputs such as number of circles formed, their characteristics and duration are based on program staff recollection.

For individuals, a Circle of Support aimed to strengthen available informal support and extend their social network, assisting in fulfilling goals and aspirations. Interviews with people with intellectual disabilities provided first-hand evidence that having a circle had assisted them in achieving goals such as moving out of home, having more opportunities for social inclusion, more involvement of others in their life and an increased sense of safety and wellbeing.

For families, programs sought to strengthen and maintain wellbeing and their ability to support the person over the life course. Family members reported that they felt that responsibility had been shared and felt more comfortable to call on others. The collective nature of Circles of Support and the sense of community reported by the many people involved were associated with family feelings of confidence, respect, reduced burden and an increased sense of belonging and wellbeing. Some families found the Circle of Support a safe place to express emotions about their experiences and an environment to collaborate and problem-solve with others.

All programs aimed to build community capacity for inclusion and increase those involved in the life of people with intellectual disabilities, but none had processes specific to this purpose.

Despite this, interviews with circle members revealed that their involvement, as ordinary community members had led to their increased understanding of the barriers people with intellectual disabilities faced in being included. Involvement of community members in a circle potentially also had an impact on attitudes, as circles created opportunities for community members to communicate with people with intellectual disabilities under the type of conditions that contact theory suggests foster breaking down prejudicial attitudes (Craig & Bigby, 2015; Pettigrew & Tropp, 2006).

Discussion

Programs designed to build and maintain the informal social networks of people with intellectual disabilities are complex, dynamic and continuously evolve in response to contexts. In this study we used a comparative case study design informed by a program logic model and “theory of change” to compare and contrast the conceptualisation and operationalisation of one strategy, Circles of Support, across three programs. Our findings demonstrate variability in the way Circles of Support are conceptualised, providing some insights into the “black box” of the programs and questions such as what works and for whom.

The findings show that while all three programs delivered Circles of Support, their aim, strategies, and target population were quite different. This poses problems for people with intellectual disabilities and their families as consumers of services in an era of disability rights and individualised funding schemes where choice and control over services is prioritised. It suggests too, the need for organisations to provide more information about the type of circle program they provide, aims, cost and target population, and be more accountable for the expected outcomes. Greater clarity about aims, strategies and target populations are also important for program developers and evaluation teams as it facilitates a shared understanding of the relationship between available resources, program processes and the extent to which desired outcomes were and could be achieved. Thus, our findings may facilitate improve strategic planning, identify potential contextual restrains and assist in developing strategies to ensure program stainability and success.

The cross-case analysis highlights several issues that require further consideration. The analysis reveals an important link between program aim, target population, funding and program processes. Two of the programs (1 and 3) targeted only people with strong existing informal networks and based their services on referrals or requests from family members of people with intellectual disabilities. The involvement of staff in these programs is short-term and focused on building the capacity of the family to develop and run their own circle and maintain them over time. Consequently, these programs are limited in time and scope and are funded on an individual basis.

In contrast to programs 1 and 3, the aim of program 2 was to build and maintain the informal network of the person with intellectual disabilities, and the coordinators’ role was to lead a process tailored to the persons existing network, which may not include any informal social relationships. This program shows the relevance and potential benefits of the Circles of Support concept to people without strong family support. However, the longer-term involvement and more intensive work required of the coordinator suggests building and maintaining a Circle of Support for this group is likely to be a much longer-term and more expensive proposition. At the time of the study, this program was block funded by philanthropic funds, but there is no reason it could not be purchased using an individualised funding package through the NDIS. However, our finding points to the importance of taking note of cost differentials and the need for a more explicit description of the aims and target groups of Circles of Support programs.

This study has illustrated the limited choice of programs that may be available to people with intellectual disabilities with limited or no informal networks. Although quite small, in our sample only one type of program included this group of people. This finding is concerning particularly given the relatively high proportion of people with intellectual disabilities with no strong family involvement or other informal social relationships (Bigby, 2008; Kamstra et al., 2015). This suggests that programs that conceptualise the development of Circles of Support solely as a “family business” might consider ways to expand the aims and processes to also include people without pre-existing networks. It also suggests that funding for innovation or demonstration pilots should be directed towards programs that are inclusive of people with limited social networks to ensure this group has choices comparable to other groups.

In regard to the question “what does it take,” the analysis reveals a link between program, governments resources, processes and intended outcomes. It has enabled an initial mapping of the range of knowledge, areas and skills of staff involved in Circle of Support programs. Despite assertions by senior managers about the specialist skills required by Circle of Support coordinators, and the need for employing people with specific knowledge as coordinators, these distinctive roles and skills were not documented in programs 1 and 3. This lack of formal documentation has the potential to undermine the staff component of an effective program and understate skills needed for practice. Further mapping of skills and competencies of staff is important to scaling up of programs and recruitment of staff with the necessary expertise, especially in the current Australian context of increasing service demand and shortage of skilled staff (Mavromaras et al., 2018).

Similarly, our findings indicate that programs resources, processes and outcomes were not well documented by organisations. In fact, in programs 1 & 3 no data were collected and documented by the organisations during the period the program had been operating on the number of circles established, circle characteristics and composition, resources allocated or outcomes. The only data available in these programs was sporadic and relied on staff and managers experiences, regulatory requirements and personal recollections. This lack of formal documentation creates issues for program development, knowledge transfer and evaluation. Keeping organisational records of program inputs, resources and outcomes would help in bringing together the various approaches to circle development into a coherent practice framework.

The study also identified limited data on the sustainability of circles after the withdrawal of program coordinators. Programs 1 and 3 did not incorporate active monitoring of group functioning and ongoing professional support for circles after they were established. It seems, however, that the underlying assumption of these programs that once the circle has been formed the capacity of the community to carry this knowledge and sustain the activity over time, was not substantiated. Research conducted in the general population suggests that relationship building and network development requires long-term commitment of those involved (Heaney & Israel, 2008). In addition, theories about groups and community development suggest there is a constant need for facilitators to accommodate changes in group dynamics as relationships evolve, in order to sustain group cohesion, activity and purposeful engagement (Welch & Yates, 2018; Wilson et al., 2010). The qualitative interviews with circles’ members provide initial evidence that in most cases Circles of Support required ongoing professional support to continue to exist over time.

The analysis also highlighted difficulties that the current and future funding mechanisms pose for the viability of programs, in terms of the gap between program aims and available resources. The findings revealed that much of the hidden and multi-faceted work required from program coordinators in all programs was done “behind the scenes” and often was not funded.

It is clear that developing a Circle of Support goes beyond one-to-one professional consultation or providing general information and short-term guidance. Both program staff and circle members described how Circles of Support were based on relationships of trust and confidence. Coordinators had to establish warm and accepting relationships with the person, their family, and other potential circle members, and these relationships were the basis of any meaningful activity. In the three programs, many of these functions were carried voluntarily by dedicated staff members lending their skills and competence or were possible due to cross subsidies and block funding of services. This raises concerns as these kinds of flexible support is no longer possible under new individualised funding models like the NDIS. The service delivery under the NDIS calls for a short-term capacity building services budgeted by billable hours. The hourly basis of NDIS pricing fails to take adequate account of the non-face to face costs associated with the delivery of Circle of Support program activities such as building and maintaining relationships with the focus person and circle members, advocacy, administrative costs and ongoing support for groups as they evolve over time are no longer funded.

Another challenge for services posed by the individualised funding model is the reliance on referral or for specific requests by people with intellectual disabilities (or their advocates) that funding for Circles of Support be included in their support plan. Our findings reveal the hidden costs of service outreach, currently many hours are spent on developing marketing materials, communicating with service providers, service users and planners to explain the model of Circles of Support, and reach out for potential participants. As the NDIS matures, special consideration should be given to the development of funding mechanisms to ensure adequate resources for these activities as well as for the overall success of Circle of Support programs.

Finally, although limited due to the size of the sample, the reliance on purposeful sampling of programs and the self-selecting nature of the sample, our findings provide preliminary evidence that Circles of Support programs are successful in achieving their desired goals. Both staff and circle members attributed a range of positive outcomes to being involved in the circle. However, an individualised approach will mean that each circle is unique, and its purpose and dynamics may change over time. Given these factors, success needs to be measured both for each individual against their own goals as well as the specific goals of the program. Our analysis indicated the importance of employing individually referenced indicators of success such as goal achievement, changes in quality of life, social inclusion, social capital, the quantity, and quality of interpersonal relationships and changing community attributes (such as social capital and community cohesion). The challenge is to develop robust and efficient methods to capture the intended and unintended outcomes from a circle from the perspectives on the person, family and community. In addition, consideration should be given to developing more robust methods of evaluation using observations, and more rigorous analysis of the costs and benefits over time.

Circles of Support may also be a mechanism that builds community social capital, by enhancing the level of trust, participation and relationships in that community. Nevertheless, outcomes such as this remain quite speculative, as impacts on broader community attitudes and cohesion require very different indicators of change to those used in this study.

Conclusions

The knowledge developed from this study can inform future design of programs to support the development and strengthening of the Circles of Support program. In the current context of individualised funding and person-centred practice, it may provide evidence to inform service designers and funders about the cost and types of effective programs. Setting out the common characteristics and differences between programs will also be useful to people with intellectual disabilities and their families in making decisions about the planning and purchase of services. There is significant room for further development of this material into more accessible guides for professional interventions aimed at informal support network development by forming Circles of Support, providing information and guidelines for people with intellectual disabilities, their families, NDIS planners and local area coordinators.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Inclusion Melbourne.