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

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<p>Full Terms & Conditions of access and use can be found at</p><p>https://www.tandfonline.com/action/journalInformation?journalCode=cjid20</p><p>Journal of Intellectual & Developmental Disability</p><p>ISSN: (Print) (Online) Journal homepage: www.tandfonline.com/journals/cjid20</p><p>Forming and supporting circles of support</p><p>for people with intellectual disabilities – a</p><p>comparative case analysis</p><p>Tal Araten-Bergman & Christine Bigby</p><p>To cite this article: Tal Araten-Bergman & Christine Bigby (2022) Forming and</p><p>supporting circles of support for people with intellectual disabilities – a comparative</p><p>case analysis, Journal of Intellectual & Developmental Disability, 47:2, 177-189, DOI:</p><p>10.3109/13668250.2021.1961049</p><p>To link to this article: https://doi.org/10.3109/13668250.2021.1961049</p><p>© 2021 The Author(s). Published by Informa</p><p>UK Limited, trading as Taylor & Francis</p><p>Group</p><p>Published online: 14 Aug 2021.</p><p>Submit your article to this journal</p><p>Article views: 3569</p><p>View related articles</p><p>View Crossmark data</p><p>Citing articles: 3 View citing articles</p><p>https://www.tandfonline.com/action/journalInformation?journalCode=cjid20</p><p>https://www.tandfonline.com/journals/cjid20?src=pdf</p><p>https://www.tandfonline.com/action/showCitFormats?doi=10.3109/13668250.2021.1961049</p><p>https://doi.org/10.3109/13668250.2021.1961049</p><p>https://www.tandfonline.com/action/authorSubmission?journalCode=cjid20&show=instructions&src=pdf</p><p>https://www.tandfonline.com/action/authorSubmission?journalCode=cjid20&show=instructions&src=pdf</p><p>https://www.tandfonline.com/doi/mlt/10.3109/13668250.2021.1961049?src=pdf</p><p>https://www.tandfonline.com/doi/mlt/10.3109/13668250.2021.1961049?src=pdf</p><p>http://crossmark.crossref.org/dialog/?doi=10.3109/13668250.2021.1961049&domain=pdf&date_stamp=14 Aug 2021</p><p>http://crossmark.crossref.org/dialog/?doi=10.3109/13668250.2021.1961049&domain=pdf&date_stamp=14 Aug 2021</p><p>https://www.tandfonline.com/doi/citedby/10.3109/13668250.2021.1961049?src=pdf</p><p>https://www.tandfonline.com/doi/citedby/10.3109/13668250.2021.1961049?src=pdf</p><p>ORIGINAL ARTICLE</p><p>Forming and supporting circles of support for people with intellectual disabilities</p><p>– a comparative case analysis</p><p>Tal Araten-Bergman and Christine Bigby</p><p>Living with Disability Research Centre, La Trobe University, Bundoora, Australia</p><p>ABSTRACT</p><p>Background: Building Circles of Support is an innovative strategy for developing natural support</p><p>networks. This study explored some of the ambiguity in the conceptualisations, operational</p><p>elements, and perceived outcomes of Circles of Support programs.</p><p>Method: A comparative case study of three Australian Circles of Support programs was conducted.</p><p>Data included document review and qualitative interviews with 27 key stakeholders. Qualitative</p><p>analysis of the data from each program was analysed using categories of the program logic as a</p><p>conceptual framework, followed by cross-case analysis to identify commonalities and differences.</p><p>Results: Findings show conceptual variability between programs, which shared similar overarching</p><p>intents but differed in program, strategies, target population and outcomes, which were shaped by</p><p>the missions of the organisation of which they were part.</p><p>Conclusion: Findings can inform the future design and evaluation of programs to support the</p><p>development of informal support network for people with intellectual disabilities.</p><p>KEYWORDS</p><p>Adults with intellectual</p><p>disabilities; informal support</p><p>networks; interventions;</p><p>program design</p><p>A substantial body of evidence establishes that positive</p><p>social relationships make a significant contribution to</p><p>the health and wellbeing of all people, both with and</p><p>without intellectual disabilities (Hong et al., 2018; Roll</p><p>& Bowers, 2019). Relationships with family, friends,</p><p>neighbours and acquaintances, based on personal ties</p><p>rather than payment are often referred to as informal</p><p>social networks (Bigby, 2008; Lipold & Burns, 2009).</p><p>This kind of network provides a range of emotional</p><p>and practical support that might also extend to assistance</p><p>to advocate or manage formal relationships with organis-</p><p>ations or service systems (Horowitz, 1985). Informal net-</p><p>works are particularly important to people with</p><p>intellectual disabilities who often require support to</p><p>self-advocate, develop social skills, participate in commu-</p><p>nity activities, and engage with others (Bigby et al., 2018;</p><p>Duggan & Linehan, 2013). Furthermore, individualised</p><p>funding models and the growing reliance on the markets</p><p>to deliver disability support services, together with the</p><p>growth of consumer-directed care inmainstream services</p><p>systems, such as health, has shifted the power dynamic</p><p>from service providers and placed it in the hands of ser-</p><p>vice users. For many people with intellectual disabilities</p><p>this shift has arguably increased the significance of</p><p>informal networks for navigating and coordinating for-</p><p>mal support (Elder-Woodward et al., 2015).</p><p>Research has consistently found that many people</p><p>with intellectual disabilities are socially isolated with</p><p>few others involved in their lives (Bigby, 2008; Forres-</p><p>ter-Jones et al., 2006; Kamstra et al., 2015; Van Asselt-</p><p>Goverts et al., 2015; Verdonschot et al., 2009). Their</p><p>social networks are small and dense, often comprised</p><p>only of family members, peers with intellectual disabil-</p><p>ities and paid staff. For example, in a review of inter-</p><p>national research, Verdonschot et al. (2009) found that</p><p>social networks of people with intellectual disabilities</p><p>averaged 3.1 members with at least one of those a paid</p><p>staff member. Furthermore, Kamstra, and colleagues’</p><p>(Kamstra et al., 2015) study of the social networks of</p><p>205 people with profound intellectual disabilities living</p><p>in group homes found, on average, they had contact</p><p>with family and friends 24.4 times a year, 58.2% had con-</p><p>tact (either face-to-face or phone call) less than once a</p><p>month and 29.5% had contact only once or twice a year.</p><p>Research on social network development suggests</p><p>that many adults with intellectual disabilities struggle</p><p>to build their own networks and often rely on assistance</p><p>from family members to get people involved in the</p><p>© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group</p><p>This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-</p><p>nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built</p><p>upon in any way.</p><p>CONTACT Tal Araten-Bergman t.araten-bergman@latrobe.edu.au</p><p>JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY</p><p>2022, VOL. 47, NO. 2, 177–189</p><p>https://doi.org/10.3109/13668250.2021.1961049</p><p>http://crossmark.crossref.org/dialog/?doi=10.3109/13668250.2021.1961049&domain=pdf&date_stamp=2022-05-02</p><p>http://orcid.org/0000-0003-4915-2729</p><p>http://orcid.org/0000-0001-7001-8976</p><p>http://creativecommons.org/licenses/by-nc-nd/4.0/</p><p>http://creativecommons.org/licenses/by-nc-nd/4.0/</p><p>mailto:t.araten-bergman@latrobe.edu.au</p><p>http://www.tandfonline.com</p><p>person’s lives (Kramer et al., 2013). Bigby (2008) found</p><p>for example, that none of the 24 people with intellectual</p><p>disabilities who had resettled from institutions into the</p><p>community had formed new friendships with people in</p><p>their local communities in the five years since they</p><p>moved.</p><p>The impoverished social networks of people with intel-</p><p>lectual disabilities have been attributed to personal con-</p><p>straints, such as limited social skills or restricted</p><p>opportunities to participate in community-based activities,</p><p>and structural constraints such as discriminatory public</p><p>attitudes (McVilly et al., 2006; O’Brien et al., 1997). Scho-</p><p>lars have concluded that adults with intellectual disabilities</p><p>may need formal strategies to assist in building social</p><p>relationships to complement naturally occurring pro-</p><p>cesses. Yet people with intellectual disabilities report that</p><p>neither families nor service providers understand the sig-</p><p>nificance of informal relationships</p><p>/TileHeight 256</p><p>/Quality 15</p><p>>></p><p>/JPEG2000ColorImageDict <<</p><p>/TileWidth 256</p><p>/TileHeight 256</p><p>/Quality 15</p><p>>></p><p>/AntiAliasGrayImages false</p><p>/CropGrayImages true</p><p>/GrayImageMinResolution 150</p><p>/GrayImageMinResolutionPolicy /OK</p><p>/DownsampleGrayImages true</p><p>/GrayImageDownsampleType /Bicubic</p><p>/GrayImageResolution 300</p><p>/GrayImageDepth -1</p><p>/GrayImageMinDownsampleDepth 2</p><p>/GrayImageDownsampleThreshold 1.50000</p><p>/EncodeGrayImages true</p><p>/GrayImageFilter /DCTEncode</p><p>/AutoFilterGrayImages false</p><p>/GrayImageAutoFilterStrategy /JPEG</p><p>/GrayACSImageDict <<</p><p>/QFactor 0.90</p><p>/HSamples [2 1 1 2] /VSamples [2 1 1 2]</p><p>>></p><p>/GrayImageDict <<</p><p>/QFactor 0.40</p><p>/HSamples [1 1 1 1] /VSamples [1 1 1 1]</p><p>>></p><p>/JPEG2000GrayACSImageDict <<</p><p>/TileWidth 256</p><p>/TileHeight 256</p><p>/Quality 15</p><p>>></p><p>/JPEG2000GrayImageDict <<</p><p>/TileWidth 256</p><p>/TileHeight 256</p><p>/Quality 15</p><p>>></p><p>/AntiAliasMonoImages false</p><p>/CropMonoImages true</p><p>/MonoImageMinResolution 1200</p><p>/MonoImageMinResolutionPolicy /OK</p><p>/DownsampleMonoImages true</p><p>/MonoImageDownsampleType /Average</p><p>/MonoImageResolution 300</p><p>/MonoImageDepth -1</p><p>/MonoImageDownsampleThreshold 1.50000</p><p>/EncodeMonoImages true</p><p>/MonoImageFilter /CCITTFaxEncode</p><p>/MonoImageDict <<</p><p>/K -1</p><p>>></p><p>/AllowPSXObjects true</p><p>/CheckCompliance [</p><p>/None</p><p>]</p><p>/PDFX1aCheck false</p><p>/PDFX3Check false</p><p>/PDFXCompliantPDFOnly false</p><p>/PDFXNoTrimBoxError true</p><p>/PDFXTrimBoxToMediaBoxOffset [</p><p>0.00000</p><p>0.00000</p><p>0.00000</p><p>0.00000</p><p>]</p><p>/PDFXSetBleedBoxToMediaBox true</p><p>/PDFXBleedBoxToTrimBoxOffset [</p><p>0.00000</p><p>0.00000</p><p>0.00000</p><p>0.00000</p><p>]</p><p>/PDFXOutputIntentProfile (None)</p><p>/PDFXOutputConditionIdentifier ()</p><p>/PDFXOutputCondition ()</p><p>/PDFXRegistryName ()</p><p>/PDFXTrapped /False</p><p>/Description <<</p><p>/ENU ()</p><p>>></p><p>>> setdistillerparams</p><p><<</p><p>/HWResolution [600 600]</p><p>/PageSize [595.245 841.846]</p><p>>> setpagedevice</p><p>were invited to participate in the study. They were</p><p>located in three different Australian states and varied</p><p>in size and focus. These programs were purposely</p><p>selected by a panel of experts (members of the steering</p><p>committee of the National Resource Centre for Circle of</p><p>Support and Microboards) as well-established programs</p><p>that were diverse in design and implementation (Palin-</p><p>kas et al., 2015). Initial contact with each program was</p><p>made by a steering committee member, who provided</p><p>information about the study to the program manager</p><p>and invited their participation. If managers were inter-</p><p>ested, the first author contacted the senior manager in</p><p>each organisation to seek their approval to participate.</p><p>All three programs that were approached agreed to par-</p><p>ticipate in the study.</p><p>Once an organisation had agreed to participate,</p><p>managers circulated information about the study to</p><p>key program stakeholders (staff, people with intellec-</p><p>tual disabilities, families and circles’ members) via the</p><p>mailing list and newsletter, inviting them to contact</p><p>the research team if they would like to participate.</p><p>This recruitment method protected past service</p><p>users’ confidentiality and privacy, allowed participants</p><p>to self-identify, gauge their interest prior to contact-</p><p>ing the research team and to share their experience</p><p>voluntarily without coercion and/or inducements</p><p>(Ellard-Gray et al., 2015). All programs participants</p><p>that contacted the researchers were included in the</p><p>study.</p><p>JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY 179</p><p>Data collection</p><p>Program managers provided an overview of the scope</p><p>and operations of the program and access to program</p><p>documentation. These documents included policy</p><p>documents, factsheets, operational manuals, implemen-</p><p>tation reports, program descriptions, minutes and notes</p><p>from meetings.</p><p>Semi-structured interviews were conducted with 16</p><p>staff members (five program coordinators; six members</p><p>of organisations’ senior management; four support and</p><p>development workers and one paid facilitator). A semi-</p><p>structured interview protocol derived from the evalu-</p><p>ation literature was used to facilitate an understanding</p><p>of the program’s logic model and its “theory of change”.</p><p>In addition, the interview was designed to uncover sta-</p><p>keholders’ experience in implementing the program and</p><p>their view of the outcomes. Special attention was given</p><p>to exploring the mechanisms and contextual factors that</p><p>facilitated or constrained the operation and intended</p><p>outcome of the program.</p><p>A further set of semi-structured interviews were con-</p><p>ducted with 11 program participants (five parents; two</p><p>people with intellectual disabilities; two siblings; one</p><p>friend and one community member). These interviews</p><p>sought participant reflections on their experience of</p><p>the circle program and their view of the outcomes.</p><p>Data was collected between December 2016 and</p><p>April 2017. All interviews were conducted face to face</p><p>by the first author and lasted between 45 and 90 min.</p><p>They were digitally recorded and transcribed in full.</p><p>Data analysis and synthesis</p><p>We used Framework analysis (Srivastava & Thomson,</p><p>2009) to code the interview transcripts and documents.</p><p>A coding matrix was developed consisting of a series of</p><p>columns (program components) and rows (interview</p><p>cases). The data in each cell was systematically summar-</p><p>ised and reduced, to allow analysis by case, category and</p><p>theme, while retaining links to the original data.</p><p>A separate case study for each program was devel-</p><p>oped, focused around identifying the program logic</p><p>model and “theory of change.” The categories of the</p><p>WK Kellogg Foundation (WKKF, 1994) program logic</p><p>were used as the conceptual framework. The framework</p><p>detailed the program context and components, which</p><p>are described in the first column in Table 1. Finally, a</p><p>comparative case analysis was conducted to compare</p><p>and identify commonalities and differences between</p><p>programs and to use the accumulated case knowledge</p><p>to reach a more general understanding that went</p><p>beyond specific context and time (Yin, 2003).</p><p>Findings</p><p>Table 1 summarises the program logic and core com-</p><p>ponents of the three programs.</p><p>Circles of support as family or service business</p><p>The cross-case analysis showed that all programs had a</p><p>similar overarching intent of sustaining informal sup-</p><p>port and the quality of life of the person with disability,</p><p>but differed in their conceptualisation of Circles of Sup-</p><p>port and the functions necessary to operationalise them.</p><p>The three programs were embedded in disability service</p><p>organisations with missions that conveyed strong com-</p><p>mitments to human rights, social inclusion of people</p><p>with intellectual disabilities and the well-being of their</p><p>families. Program 1 was part of an organisation with a</p><p>strong mission to support families and this was reflected</p><p>in the program logic. The program focused on support-</p><p>ing families to ensure continuity of informal support</p><p>across the lifespan, with the rationale that if the family</p><p>were well supported the person with disability would</p><p>benefit. In this context, Circles of Support were con-</p><p>ceived as providing a safety net for family members</p><p>and assisting them in their decision-making to ensure</p><p>their relative with intellectual disabilities lived a good</p><p>quality of life in the present and future. Similarly, pro-</p><p>gram 3 was embedded in an organisation that had a</p><p>strong focus on support for carers through respite pro-</p><p>grams and support coordination for people with intel-</p><p>lectual disabilities. Circles of Support were conceived</p><p>by both programs as essentially family business, relying</p><p>on the motivation and contribution of family and other</p><p>informal network members to lead, develop and sustain</p><p>circles. The roles of program staff were short-term and</p><p>focused on building the capacity of the families to</p><p>develop and run their own circles. Both programs relied</p><p>on referrals or the expressed interest of families, thus</p><p>targeting only people with intellectual disabilities who</p><p>had an existing social network.</p><p>In contrast, program 2 was embedded in a disability</p><p>support organisation with a broad mission of support-</p><p>ing people with intellectual disabilities and community</p><p>development. The program logic of the circles program</p><p>concentrated on people with intellectual disabilities</p><p>rather than their families. The program actively reached</p><p>out to people already supported by other programs in</p><p>the organisation who might benefit from a Circles of</p><p>Support and began by assessing the strengths of their</p><p>existing informal network. In contrast to programs 1</p><p>and 3, the model adopted by program 2 allowed for iso-</p><p>lated people, particularly those in supported accommo-</p><p>dation without strong family support, or with little or no</p><p>180 T. ARATEN-BERGMAN AND C. BIGBY</p><p>Table 1. Program logic and core components of each circle of support program.</p><p>Context Program 1 Program 2 Program 3</p><p>Organisational mission To ensure people with intellectual disabilities are supported</p><p>and safeguarded by their family across the lifespan</p><p>To provide people with intellectual disabilities support and</p><p>opportunities to do the things they want to do with the</p><p>people that matter to them in accepting and inclusive</p><p>communities</p><p>To work with vulnerable people and their families to live a</p><p>valued and meaningful life in their communities</p><p>Aim To provide guidance and support for families to develop</p><p>and maintain their own Circles of Support. To enhance</p><p>and maintain the capacity of the family to provide support</p><p>across the person’s lifespan.</p><p>To develop and provide “proof of concept” for a Circle of</p><p>Support model. Build and strengthen the capacity of the</p><p>individual’s informal supporter to provide meaningful</p><p>support that assists them to live a life of quality as part of an</p><p>accepting community.</p><p>To provide guidance and structure for families to develop and</p><p>maintain their own Circles of Support. Build and sustain the</p><p>capacity of informal network members to support persons</p><p>with disability and their family.</p><p>Intended outcomes Maintain the family capacity to provide ongoing</p><p>support</p><p>and advocacy</p><p>Families</p><p>Reduce caregiver burnout; enhance family well-being;</p><p>mechanism for decision-making, PCP and succession</p><p>planning.</p><p>People with intellectual disabilities</p><p>Improve quality of life and continuity of support across</p><p>their lifespan.</p><p>Community</p><p>Enhance knowledge, change attitudes and improve</p><p>capacity for being involved and supporting people with</p><p>intellectual disabilities and their families.</p><p>Build and maintain a person`s informal support network.</p><p>People with intellectual disabilities</p><p>Develop and enhance informal relationships and support</p><p>network; enhance social inclusion and quality-of-life and</p><p>choice and control.</p><p>Community</p><p>Build more inclusive communities.</p><p>Maintain the family capacity to provide ongoing support and</p><p>advocacy.</p><p>Families</p><p>Prevent caregiver burnout; enhance family well-being</p><p>mechanism for person-centred and succession planning</p><p>People with intellectual disabilities</p><p>Enhance social inclusion quality-of-life choice and control.</p><p>Community</p><p>Enhance knowledge, change attitudes and capacity to being</p><p>involved and support people with intellectual disabilities and</p><p>their families.</p><p>Target population Families of people with intellectual disabilities.</p><p>People with intellectual disabilities with existing social</p><p>networks.</p><p>People with intellectual disabilities with existing or limited or</p><p>no informal networks.</p><p>Families of people with intellectual disabilities.</p><p>People with intellectual disabilities with existing social</p><p>networks.</p><p>Primary strategy Provide professional structured process to introduce</p><p>formality into existing informal networks.</p><p>Provide information to care providers, people with intellectual</p><p>disabilities and community members about the Circle of</p><p>Support model.</p><p>Initiate and provide a professional structured process to build</p><p>and strengthen informal support networks for people with</p><p>intellectual disabilities and to provide ongoing facilitation</p><p>and coordination.</p><p>Provide a structured process to introduce formality into</p><p>existing social networks and to assist forming circle of</p><p>support groups.</p><p>Activities Provide information on the Circle of Support model and its</p><p>application.</p><p>Preparation phase: relationship mapping, supporting the</p><p>invitation process and agenda planning.</p><p>Facilitation phase: facilitate introduction night, first circle</p><p>meeting, and further meetings until circle members can</p><p>take on the role.</p><p>Support, guide and supervise facilitator if necessary,</p><p>during the first year.</p><p>Promote involvement by providing information about Circles of</p><p>Support to people with intellectual disabilities, care providers</p><p>and support workers.</p><p>Internal recruitment: introduce the Circle of Support concept</p><p>to the organisation’s support coordinator, identify potential</p><p>participants, encourage referrals.</p><p>Relationship mapping and initial evaluation of focus person’s</p><p>informal network.</p><p>Three distinct pathways depending on the person’s existing</p><p>informal support network.</p><p>For people with no support network: coordinator engage to</p><p>build a relationship with the person, recruit existing members</p><p>of the person’s informal support network, find new</p><p>supporters, build relationships and facilitate regular meetings</p><p>to engage the person.</p><p>Provide information on circles of support.</p><p>Preparation: (2 home visits) provide support and guidance,</p><p>relationship mapping, develop invitation strategies and</p><p>materials, provide support and guidance for PCP and agenda</p><p>development.</p><p>Facilitation: facilitation of the first two circle meetings,</p><p>explaining and guiding members to fulfil essential roles</p><p>(facilitator, note-taking), support and guidance for facilitators</p><p>in the first two meetings.</p><p>(Continued )</p><p>JO</p><p>U</p><p>RN</p><p>A</p><p>L</p><p>O</p><p>F</p><p>IN</p><p>TELLEC</p><p>TU</p><p>A</p><p>L</p><p>&</p><p>D</p><p>EV</p><p>ELO</p><p>PM</p><p>EN</p><p>TA</p><p>L</p><p>D</p><p>ISA</p><p>BILITY</p><p>181</p><p>Table 1. Continued.</p><p>Context Program 1 Program 2 Program 3</p><p>For people with at least one committed member in their</p><p>support network: coordinator works with the primary</p><p>supporter to undertake, relationship mapping, new member</p><p>invitation, person-centred planning (PCP), organise and</p><p>facilitate regular meetings, chair meetings, give guidance and</p><p>monitor action items.</p><p>For people with an existing support network: coordinator</p><p>provide, information, guidance and supervision, relationship</p><p>mapping, circle invitation, PCP and agenda development for</p><p>the first meetings, guidance and supervision for primary</p><p>supporter and family in the first few meetings.</p><p>Program input:</p><p>Professional knowledge</p><p>and skills</p><p>Knowledge of disability service environment, PCP, group</p><p>facilitation and Circle of Support model development and</p><p>delivery.</p><p>Communication skills, sensitivity and respect for diversity.</p><p>Knowledge of disability service environment, PCP, group</p><p>facilitation and circle of support model development and</p><p>delivery.</p><p>Communication skills, sensitivity and respect for diversity.</p><p>Knowledge of disability service environment, PCP, group</p><p>facilitation and circle of support model development and</p><p>delivery.</p><p>Communication skills, sensitivity and respect for diversity.</p><p>Program input:</p><p>Time and energy</p><p>10-15 h of professional involvement in the preparation</p><p>phase and 2-3 h for each meeting in the first year of</p><p>operation</p><p>Time depends on the person’s existing informal support</p><p>network:</p><p>For people with no support network: preparation phase 25 h</p><p>and then 10 h per meeting (plus any additional tasks</p><p>allocated at each meeting).</p><p>For people with at least one committed member in their</p><p>support network: 15 h preparation phase and 8 h per</p><p>meeting (plus any additional tasks allocated at each</p><p>meeting).</p><p>For people with an existing informal support network: 10 h</p><p>preparation phase and 2-3 h per meeting.</p><p>15-30 h of professional involvement.</p><p>Program input: Personnel Two employees with expertise in circle of support</p><p>development. Flexible hours determined by the number</p><p>of interested families.</p><p>Part-time program coordinator – one staff member with</p><p>expertise in circle of support development.</p><p>Supervision of senior management.</p><p>One staff member with expertise in circle of support</p><p>development – flexible hours determined by the number of</p><p>referrals.</p><p>Funding Block funding through State Government Block funding through State Government and philanthropic</p><p>grants</p><p>Facilitation at an hourly rate as ‘support coordination’ based on</p><p>the quote from the Circle of Support coordinator</p><p>For people with intellectual disabilities: individual funding</p><p>NDIS plan</p><p>For families: individual funding from government carer</p><p>support program,</p><p>Fee for service</p><p>Outputs: Number of</p><p>circles support</p><p>developed and</p><p>maintained</p><p>No data collected. Staff estimated approximately 100 Circles</p><p>of Support initiated over 36 years. No data on their</p><p>sustainability after service withdrawal.</p><p>Nine Circles of Support launched over two years out of which</p><p>three were formed and operated for at least six months. One</p><p>circle continued its operation after the withdrawal of the</p><p>circle of support coordinator.</p><p>No data collected. Staff estimated approximately 60 circles</p><p>were initiated over 12 years. No data on their sustainability</p><p>after service withdrawal.</p><p>Outputs: Documentation Fact sheets for families, facilitators</p><p>Supporting documents and templates for families</p><p>Circle of Support and succession plan workshops</p><p>Circle of Support information sheets</p><p>Circle of Support website</p><p>Training materials including, participant narrative videos;</p><p>training curriculum and guide; organisational documentation;</p><p>Circle of Support coordination job description, Circle of</p><p>Support development protocol</p><p>Fact sheets</p><p>Supporting documents templates Organisational</p><p>documentation</p><p>Circle of Support plan form for funders and families</p><p>Outcomes Person with disability</p><p>Increased quality of life, sense of belonging, social</p><p>inclusion.</p><p>Strengthened communication and relationships.</p><p>Person with disability</p><p>Support to achieve desirable goals: moving out of family</p><p>home, securing open employment, pursuing interests and</p><p>hobbies in the community.</p><p>Person with disability</p><p>Support in achieving desirable goals:</p><p>Increased opportunity for socialising & friendships, self-</p><p>determination, social capital, wellbeing and self-worth.</p><p>(Continued</p><p>)</p><p>182</p><p>T.A</p><p>RA</p><p>TEN</p><p>-BERG</p><p>M</p><p>A</p><p>N</p><p>A</p><p>N</p><p>D</p><p>C</p><p>.BIG</p><p>BY</p><p>other forms of informal support to be involved and</p><p>potentially benefit from the formation of a Circle of</p><p>Support. This program perceived a Circle of Support</p><p>more as service business with a much stronger and</p><p>longer-term role for the professional program coordina-</p><p>tor in initiating and managing circle development and</p><p>ensuring its continuing functioning.</p><p>In this program (2), unlike the others, the role of the</p><p>coordinator varied according to the person’s existing</p><p>network and ranged from being a facilitator to social</p><p>broker. For people with no or limited informal net-</p><p>works, the coordinator led the development of a net-</p><p>work by identifying and strengthening existing, albeit</p><p>often tenuous social contacts, and assisting the develop-</p><p>ment of new relationships. This required significant and</p><p>long-term resources, and its centrality to the program</p><p>meant that when short term funding was exhausted</p><p>the program was not sustainable.</p><p>Program governance, size and scope</p><p>Programs varied in scale and size, budget, staff, partici-</p><p>pant numbers, and hours of support offered. Program 2</p><p>was the only discrete program designed and funded to</p><p>provide Circle of Support coordination. Although pro-</p><p>gram 3 provided Circles of Support facilitation and</p><p>coordination it was just one strategy the organisation</p><p>used in its broader Person Centred Planning (PCP) ser-</p><p>vices. The organisation regarded these Circles of Sup-</p><p>port strategies as billable hours of the Circles of</p><p>Support specialists, which were met on a user pays</p><p>basis, through an individual’s NDIS plan, a carer sup-</p><p>port program or privately. Similarly, program 1 was</p><p>not funded either as a distinct program within the</p><p>organisation but conceived as one strategy aimed at</p><p>safeguarding and ensuring the quality of life for people</p><p>with disabilities and their families.</p><p>Program inputs</p><p>Knowledge and skills: All programs identified similar</p><p>areas of knowledge and skills for the coordinator.</p><p>These include knowledge about the disability services</p><p>system and the concept of circles of support, and skills</p><p>in PCP processes and group facilitation. Personal attri-</p><p>butes and skills such as commitment, values, listening,</p><p>communication and person-centred thinking were</p><p>also valued. Senior managers in all three organisations</p><p>stressed the specialist skills required in forming a Circle</p><p>of Support that differed from those required for other</p><p>types of support coordination. Despite this, however,</p><p>only program 2 employed a coordinator with a distinct</p><p>role and responsibility for developing circles. Circles ofTa</p><p>bl</p><p>e</p><p>1.</p><p>Co</p><p>nt</p><p>in</p><p>ue</p><p>d.</p><p>Co</p><p>nt</p><p>ex</p><p>t</p><p>Pr</p><p>og</p><p>ra</p><p>m</p><p>1</p><p>Pr</p><p>og</p><p>ra</p><p>m</p><p>2</p><p>Pr</p><p>og</p><p>ra</p><p>m</p><p>3</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>in</p><p>fo</p><p>rm</p><p>al</p><p>su</p><p>pp</p><p>or</p><p>t</p><p>to</p><p>ac</p><p>hi</p><p>ev</p><p>e</p><p>de</p><p>si</p><p>ra</p><p>bl</p><p>e</p><p>go</p><p>al</p><p>s</p><p>su</p><p>ch</p><p>as</p><p>:m</p><p>ov</p><p>in</p><p>g</p><p>ou</p><p>t</p><p>of</p><p>fa</p><p>m</p><p>ily</p><p>ho</p><p>m</p><p>e,</p><p>se</p><p>cu</p><p>rin</p><p>g</p><p>op</p><p>en</p><p>em</p><p>pl</p><p>oy</p><p>m</p><p>en</p><p>t,</p><p>pu</p><p>rs</p><p>ui</p><p>ng</p><p>in</p><p>te</p><p>re</p><p>st</p><p>s</p><p>an</p><p>d</p><p>ho</p><p>bb</p><p>ie</p><p>s</p><p>in</p><p>th</p><p>e</p><p>co</p><p>m</p><p>m</p><p>un</p><p>ity</p><p>.</p><p>Fa</p><p>m</p><p>ili</p><p>es</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>nu</p><p>m</p><p>be</p><p>ro</p><p>fp</p><p>eo</p><p>pl</p><p>e</p><p>in</p><p>vo</p><p>lv</p><p>ed</p><p>in</p><p>lif</p><p>e</p><p>of</p><p>th</p><p>e</p><p>pe</p><p>rs</p><p>on</p><p>w</p><p>ith</p><p>di</p><p>sa</p><p>bi</p><p>lit</p><p>y.</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>pr</p><p>ac</p><p>tic</p><p>al</p><p>su</p><p>pp</p><p>or</p><p>t</p><p>an</p><p>d</p><p>in</p><p>fo</p><p>rm</p><p>al</p><p>ne</p><p>tw</p><p>or</p><p>ks</p><p>to</p><p>pr</p><p>ov</p><p>id</p><p>e</p><p>su</p><p>st</p><p>ai</p><p>na</p><p>bl</p><p>e</p><p>an</p><p>d</p><p>lo</p><p>ng</p><p>-t</p><p>er</p><p>m</p><p>su</p><p>pp</p><p>or</p><p>t.</p><p>As</p><p>si</p><p>st</p><p>an</p><p>ce</p><p>in</p><p>de</p><p>ci</p><p>si</p><p>on</p><p>-m</p><p>ak</p><p>in</p><p>g.</p><p>D</p><p>ec</p><p>re</p><p>as</p><p>ed</p><p>bu</p><p>rn</p><p>ou</p><p>t.</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>fa</p><p>m</p><p>ily</p><p>so</p><p>ci</p><p>al</p><p>ca</p><p>pi</p><p>ta</p><p>l.</p><p>Ci</p><p>rc</p><p>le</p><p>m</p><p>em</p><p>be</p><p>rs</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>co</p><p>m</p><p>m</p><p>un</p><p>ity</p><p>un</p><p>de</p><p>rs</p><p>ta</p><p>nd</p><p>in</p><p>g</p><p>of</p><p>rig</p><p>ht</p><p>s</p><p>of</p><p>pe</p><p>op</p><p>le</p><p>w</p><p>ith</p><p>di</p><p>sa</p><p>bi</p><p>lit</p><p>y.</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>op</p><p>po</p><p>rt</p><p>un</p><p>iti</p><p>es</p><p>to</p><p>be</p><p>in</p><p>vo</p><p>lv</p><p>ed</p><p>in</p><p>th</p><p>e</p><p>liv</p><p>es</p><p>of</p><p>th</p><p>e</p><p>pe</p><p>rs</p><p>on</p><p>w</p><p>ith</p><p>a</p><p>di</p><p>sa</p><p>bi</p><p>lit</p><p>y</p><p>an</p><p>d</p><p>th</p><p>ei</p><p>r</p><p>fa</p><p>m</p><p>ily</p><p>.</p><p>Se</p><p>ns</p><p>e</p><p>of</p><p>be</p><p>lo</p><p>ng</p><p>in</p><p>g,</p><p>pu</p><p>rp</p><p>os</p><p>e</p><p>an</p><p>d</p><p>m</p><p>ea</p><p>ni</p><p>ng</p><p>.</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>op</p><p>po</p><p>rt</p><p>un</p><p>ity</p><p>fo</p><p>r</p><p>so</p><p>ci</p><p>al</p><p>is</p><p>in</p><p>g</p><p>&</p><p>fr</p><p>ie</p><p>nd</p><p>sh</p><p>ip</p><p>s,</p><p>se</p><p>lf-</p><p>de</p><p>te</p><p>rm</p><p>in</p><p>at</p><p>io</p><p>n,</p><p>so</p><p>ci</p><p>al</p><p>ca</p><p>pi</p><p>ta</p><p>l,</p><p>fe</p><p>el</p><p>in</p><p>gs</p><p>of</p><p>sa</p><p>fe</p><p>ty</p><p>,a</p><p>dv</p><p>oc</p><p>ac</p><p>y</p><p>su</p><p>pp</p><p>or</p><p>t,</p><p>w</p><p>el</p><p>lb</p><p>ei</p><p>ng</p><p>an</p><p>d</p><p>se</p><p>lf-</p><p>w</p><p>or</p><p>th</p><p>.</p><p>Fa</p><p>m</p><p>ili</p><p>es</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>so</p><p>ci</p><p>al</p><p>ca</p><p>pi</p><p>ta</p><p>l</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>fa</p><p>m</p><p>ily</p><p>su</p><p>pp</p><p>or</p><p>t</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>w</p><p>el</p><p>lb</p><p>ei</p><p>ng</p><p>an</p><p>d</p><p>se</p><p>lf-</p><p>w</p><p>or</p><p>th</p><p>.</p><p>Ci</p><p>rc</p><p>le</p><p>m</p><p>em</p><p>be</p><p>rs</p><p>En</p><p>ha</p><p>nc</p><p>ed</p><p>un</p><p>de</p><p>rs</p><p>ta</p><p>nd</p><p>in</p><p>g</p><p>of</p><p>di</p><p>sa</p><p>bi</p><p>lit</p><p>y.</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>ca</p><p>pa</p><p>ci</p><p>ty</p><p>to</p><p>pr</p><p>ov</p><p>id</p><p>e</p><p>m</p><p>ea</p><p>ni</p><p>ng</p><p>fu</p><p>ls</p><p>up</p><p>po</p><p>rt</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>se</p><p>ns</p><p>e</p><p>of</p><p>so</p><p>ci</p><p>al</p><p>co</p><p>he</p><p>si</p><p>on</p><p>.</p><p>Fa</p><p>m</p><p>ili</p><p>es</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>fa</p><p>m</p><p>ily</p><p>su</p><p>pp</p><p>or</p><p>t,</p><p>su</p><p>cc</p><p>es</p><p>si</p><p>on</p><p>pl</p><p>an</p><p>ni</p><p>ng</p><p>an</p><p>d</p><p>in</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>w</p><p>el</p><p>lb</p><p>ei</p><p>ng</p><p>.</p><p>Ci</p><p>rc</p><p>le</p><p>m</p><p>em</p><p>be</p><p>rs</p><p>En</p><p>ha</p><p>nc</p><p>ed</p><p>un</p><p>de</p><p>rs</p><p>ta</p><p>nd</p><p>in</p><p>g</p><p>of</p><p>di</p><p>sa</p><p>bi</p><p>lit</p><p>y.</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>ca</p><p>pa</p><p>ci</p><p>ty</p><p>to</p><p>pr</p><p>ov</p><p>id</p><p>e</p><p>m</p><p>ea</p><p>ni</p><p>ng</p><p>fu</p><p>ls</p><p>up</p><p>po</p><p>rt</p><p>.</p><p>In</p><p>cr</p><p>ea</p><p>se</p><p>d</p><p>se</p><p>ns</p><p>e</p><p>of</p><p>so</p><p>ci</p><p>al</p><p>co</p><p>he</p><p>si</p><p>on</p><p>.</p><p>JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY 183</p><p>Support coordinators in programs 1 and 3 also worked</p><p>as general support coordinators but had no formal edu-</p><p>cation or specific qualification and training on Circles of</p><p>Supports. Similarly, only program 2 had a documented</p><p>role description detailing the specific skills, values and</p><p>characteristics required for the Circles of Support coor-</p><p>dinator. Common to all programs were strong and char-</p><p>ismatic leaders close to the operational aspects of the</p><p>programs, and whose knowledge of participants illus-</p><p>trated the principles of equity valued by organisations,</p><p>and the absence of social distance between staff and</p><p>participants.</p><p>Staff time and energy: Many activities associated with</p><p>Circles of Support rely on the availability of family or</p><p>circle members and happen after office hours. Staff</p><p>emphasised their flexibility in arranging their time</p><p>according to the requests of people with intellectual dis-</p><p>abilities, families and circle members. In all three pro-</p><p>grams, staff conveyed an extremely high commitment</p><p>to the program and willingness to work beyond the</p><p>boundaries of their budgeted time and role to promote</p><p>circle activities. For instance, the organisation that man-</p><p>aged program 2 estimated that staff contributed 80</p><p>unpaid hours to the program as well as tangible personal</p><p>resources such as paying for circle members’</p><p>refreshments.</p><p>Places: In keeping with the philosophy of Circles of</p><p>Support most program activities occurred in commu-</p><p>nity spaces of significance to the people supported</p><p>such as restaurants, pubs and circle members’ homes.</p><p>Program 2 experienced a particular challenge in this</p><p>respect if the person had no existing informal network</p><p>members and when potential circle members met</p><p>venues such as cafés, they expected associated costs</p><p>would be covered either by the program or by the per-</p><p>son. Costs such as these were not accounted for in the</p><p>program budget, which often resulted in the coordina-</p><p>tor paying them from her own pocket.</p><p>Funding: All the programs were in the process of</p><p>rethinking budgets and calculating costs per participant</p><p>hour to align their business models with NDIS indivi-</p><p>dualised funding. Detailed budget information was not</p><p>available, but the estimates suggest that these are small</p><p>scale programs. Primary sources of income were small</p><p>local government or philanthropic grants and state gov-</p><p>ernment disability support service funding. In addition,</p><p>shared administration and cross-subsidisation of pro-</p><p>grams within organisations made it difficult to accu-</p><p>rately identify program budgets, and sometimes</p><p>boundaries between different programs were blurred.</p><p>For example, in program 1 it was challenging for partici-</p><p>pants to distinguish between activities that were part of</p><p>the general support planning and those part of the</p><p>Circles of Support program. Some families attended</p><p>the succession planning and documenting information</p><p>workshops the organisation delivered, but it was not</p><p>always clear whether these workshops were a separate</p><p>or integral part of the circle of support development.</p><p>Program activities and processes</p><p>All three programs had structured sequential processes,</p><p>commencing with providing general information, fol-</p><p>lowed by a preparation phase, relationship mapping</p><p>and facilitation. Processes reflected program aims, for</p><p>example, whether circle development was perceived as</p><p>family or service business, and differed by the degree of</p><p>structure and flexibility accorded to coordinators. For</p><p>example, program 3 had a predetermined package of</p><p>support</p><p>and coordination hours available at a set cost.</p><p>In comparison in program 2, although having a very</p><p>structured process, the length and intensity of coordina-</p><p>tor involvement were determined by the length of time</p><p>it took for the circle to mature. All activities in programs</p><p>1 and 3 were focused on supporting the family to do this</p><p>themselves and in contrast to program 2 staff were not</p><p>involved in direct recruitment of potential circle mem-</p><p>bers or developing agendas and tasks allocated by</p><p>circles.</p><p>Processes in program 2 were less linear than the other</p><p>programs, and as already flagged depended on the per-</p><p>son’s existing informal network. Whether for example,</p><p>they had no or very few network members, a network</p><p>but no members who were willing or able to commit</p><p>to build and maintain the circle of support, or an exist-</p><p>ing network with strong and committed members. Thus</p><p>the process included an initial evaluation phase where</p><p>the coordinator assessed the person’s network and</p><p>decided the appropriate strategy and goal for circle</p><p>development. For people with no or very few network</p><p>members, the coordinator’s activities included building</p><p>a relationship with the person, searching and recruiting</p><p>network members, facilitating the circle, and initiating</p><p>opportunities for others to socially engage with the</p><p>person.</p><p>Output</p><p>None of the programs had formal data on program out-</p><p>puts nor did the programs include evaluation in their</p><p>model to determine program effectiveness and costs.</p><p>In this study, all data on outputs such as number of cir-</p><p>cles formed, their characteristics and duration are based</p><p>on program staff recollection.</p><p>For individuals, a Circle of Support aimed to</p><p>strengthen available informal support and extend their</p><p>184 T. ARATEN-BERGMAN AND C. BIGBY</p><p>social network, assisting in fulfilling goals and aspira-</p><p>tions. Interviews with people with intellectual disabil-</p><p>ities provided first-hand evidence that having a circle</p><p>had assisted them in achieving goals such as moving</p><p>out of home, having more opportunities for social</p><p>inclusion, more involvement of others in their life and</p><p>an increased sense of safety and wellbeing.</p><p>For families, programs sought to strengthen and</p><p>maintain wellbeing and their ability to support the per-</p><p>son over the life course. Family members reported that</p><p>they felt that responsibility had been shared and felt</p><p>more comfortable to call on others. The collective</p><p>nature of Circles of Support and the sense of community</p><p>reported by the many people involved were associated</p><p>with family feelings of confidence, respect, reduced bur-</p><p>den and an increased sense of belonging and wellbeing.</p><p>Some families found the Circle of Support a safe place to</p><p>express emotions about their experiences and an</p><p>environment to collaborate and problem-solve with</p><p>others.</p><p>All programs aimed to build community capacity for</p><p>inclusion and increase those involved in the life of</p><p>people with intellectual disabilities, but none had pro-</p><p>cesses specific to this purpose.</p><p>Despite this, interviews with circle members revealed</p><p>that their involvement, as ordinary community mem-</p><p>bers had led to their increased understanding of the bar-</p><p>riers people with intellectual disabilities faced in being</p><p>included. Involvement of community members in a cir-</p><p>cle potentially also had an impact on attitudes, as circles</p><p>created opportunities for community members to com-</p><p>municate with people with intellectual disabilities under</p><p>the type of conditions that contact theory suggests foster</p><p>breaking down prejudicial attitudes (Craig & Bigby,</p><p>2015; Pettigrew & Tropp, 2006).</p><p>Discussion</p><p>Programs designed to build and maintain the informal</p><p>social networks of people with intellectual disabilities</p><p>are complex, dynamic and continuously evolve in</p><p>response to contexts. In this study we used a compara-</p><p>tive case study design informed by a program logic</p><p>model and “theory of change” to compare and contrast</p><p>the conceptualisation and operationalisation of one</p><p>strategy, Circles of Support, across three programs.</p><p>Our findings demonstrate variability in the way Circles</p><p>of Support are conceptualised, providing some insights</p><p>into the “black box” of the programs and questions such</p><p>as what works and for whom.</p><p>The findings show that while all three programs</p><p>delivered Circles of Support, their aim, strategies, and</p><p>target population were quite different. This poses</p><p>problems for people with intellectual disabilities and</p><p>their families as consumers of services in an era of dis-</p><p>ability rights and individualised funding schemes where</p><p>choice and control over services is prioritised. It</p><p>suggests too, the need for organisations to provide</p><p>more information about the type of circle program</p><p>they provide, aims, cost and target population, and be</p><p>more accountable for the expected outcomes. Greater</p><p>clarity about aims, strategies and target populations</p><p>are also important for program developers and evalu-</p><p>ation teams as it facilitates a shared understanding of</p><p>the relationship between available resources, program</p><p>processes and the extent to which desired outcomes</p><p>were and could be achieved. Thus, our findings may</p><p>facilitate improve strategic planning, identify potential</p><p>contextual restrains and assist in developing strategies</p><p>to ensure program stainability and success.</p><p>The cross-case analysis highlights several issues that</p><p>require further consideration. The analysis reveals an</p><p>important link between program aim, target population,</p><p>funding and program processes. Two of the programs (1</p><p>and 3) targeted only people with strong existing infor-</p><p>mal networks and based their services on referrals or</p><p>requests from family members of people with intellec-</p><p>tual disabilities. The involvement of staff in these pro-</p><p>grams is short-term and focused on building the</p><p>capacity of the family to develop and run their own cir-</p><p>cle and maintain them over time. Consequently, these</p><p>programs are limited in time and scope and are funded</p><p>on an individual basis.</p><p>In contrast to programs 1 and 3, the aim of program</p><p>2 was to build and maintain the informal network of the</p><p>person with intellectual disabilities, and the coordina-</p><p>tors’ role was to lead a process tailored to the persons</p><p>existing network, which may not include any informal</p><p>social relationships. This program shows the relevance</p><p>and potential benefits of the Circles of Support concept</p><p>to people without strong family support. However, the</p><p>longer-term involvement and more intensive work</p><p>required of the coordinator suggests building and main-</p><p>taining a Circle of Support for this group is likely to be a</p><p>much longer-term and more expensive proposition. At</p><p>the time of the study, this program was block funded</p><p>by philanthropic funds, but there is no reason it could</p><p>not be purchased using an individualised funding pack-</p><p>age through the NDIS. However, our finding points to</p><p>the importance of taking note of cost differentials and</p><p>the need for a more explicit description of the aims</p><p>and target groups of Circles of Support programs.</p><p>This study has illustrated the limited choice of pro-</p><p>grams that may be available to people with intellectual</p><p>disabilities with limited or no informal networks.</p><p>Although quite small, in our sample only one type of</p><p>JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY 185</p><p>program included this group of people. This finding is</p><p>concerning particularly given the relatively high pro-</p><p>portion of people with intellectual disabilities with no</p><p>strong family involvement or other informal social</p><p>relationships (Bigby, 2008; Kamstra et al., 2015). This</p><p>suggests that programs that conceptualise the develop-</p><p>ment of Circles of Support solely as a “family business”</p><p>might consider ways to expand the aims and processes</p><p>to also include people without pre-existing networks.</p><p>It also suggests that funding for innovation or demon-</p><p>stration pilots should be directed towards programs</p><p>that are inclusive of people with limited social networks</p><p>to ensure this group has choices comparable to other</p><p>groups.</p><p>In regard to the question “what does it take,” the</p><p>analysis reveals</p><p>a link between program, governments</p><p>resources, processes and intended outcomes. It has</p><p>enabled an initial mapping of the range of knowledge,</p><p>areas and skills of staff involved in Circle of Support</p><p>programs. Despite assertions by senior managers</p><p>about the specialist skills required by Circle of Support</p><p>coordinators, and the need for employing people with</p><p>specific knowledge as coordinators, these distinctive</p><p>roles and skills were not documented in programs 1</p><p>and 3. This lack of formal documentation has the poten-</p><p>tial to undermine the staff component of an effective</p><p>program and understate skills needed for practice.</p><p>Further mapping of skills and competencies of staff is</p><p>important to scaling up of programs and recruitment</p><p>of staff with the necessary expertise, especially in the</p><p>current Australian context of increasing service demand</p><p>and shortage of skilled staff (Mavromaras et al., 2018).</p><p>Similarly, our findings indicate that programs</p><p>resources, processes and outcomes were not well docu-</p><p>mented by organisations. In fact, in programs 1 & 3 no</p><p>data were collected and documented by the organis-</p><p>ations during the period the program had been operat-</p><p>ing on the number of circles established, circle</p><p>characteristics and composition, resources allocated or</p><p>outcomes. The only data available in these programs</p><p>was sporadic and relied on staff and managers experi-</p><p>ences, regulatory requirements and personal recollec-</p><p>tions. This lack of formal documentation creates</p><p>issues for program development, knowledge transfer</p><p>and evaluation. Keeping organisational records of pro-</p><p>gram inputs, resources and outcomes would help in</p><p>bringing together the various approaches to circle devel-</p><p>opment into a coherent practice framework.</p><p>The study also identified limited data on the sustain-</p><p>ability of circles after the withdrawal of program coordi-</p><p>nators. Programs 1 and 3 did not incorporate active</p><p>monitoring of group functioning and ongoing pro-</p><p>fessional support for circles after they were established.</p><p>It seems, however, that the underlying assumption of</p><p>these programs that once the circle has been formed</p><p>the capacity of the community to carry this knowledge</p><p>and sustain the activity over time, was not substantiated.</p><p>Research conducted in the general population suggests</p><p>that relationship building and network development</p><p>requires long-term commitment of those involved</p><p>(Heaney & Israel, 2008). In addition, theories about</p><p>groups and community development suggest there is a</p><p>constant need for facilitators to accommodate changes</p><p>in group dynamics as relationships evolve, in order to</p><p>sustain group cohesion, activity and purposeful engage-</p><p>ment (Welch & Yates, 2018; Wilson et al., 2010). The</p><p>qualitative interviews with circles’ members provide</p><p>initial evidence that in most cases Circles of Support</p><p>required ongoing professional support to continue to</p><p>exist over time.</p><p>The analysis also highlighted difficulties that the cur-</p><p>rent and future funding mechanisms pose for the viabi-</p><p>lity of programs, in terms of the gap between program</p><p>aims and available resources. The findings revealed</p><p>that much of the hidden and multi-faceted work</p><p>required from program coordinators in all programs</p><p>was done “behind the scenes” and often was not funded.</p><p>It is clear that developing a Circle of Support goes</p><p>beyond one-to-one professional consultation or provid-</p><p>ing general information and short-term guidance. Both</p><p>program staff and circle members described how Circles</p><p>of Support were based on relationships of trust and</p><p>confidence. Coordinators had to establish warm and</p><p>accepting relationships with the person, their family,</p><p>and other potential circle members, and these relation-</p><p>ships were the basis of any meaningful activity. In the</p><p>three programs, many of these functions were carried</p><p>voluntarily by dedicated staff members lending their</p><p>skills and competence or were possible due to cross sub-</p><p>sidies and block funding of services. This raises con-</p><p>cerns as these kinds of flexible support is no longer</p><p>possible under new individualised funding models like</p><p>the NDIS. The service delivery under the NDIS calls</p><p>for a short-term capacity building services budgeted</p><p>by billable hours. The hourly basis of NDIS pricing</p><p>fails to take adequate account of the non-face to face</p><p>costs associated with the delivery of Circle of Support</p><p>program activities such as building and maintaining</p><p>relationships with the focus person and circle members,</p><p>advocacy, administrative costs and ongoing support for</p><p>groups as they evolve over time are no longer funded.</p><p>Another challenge for services posed by the indivi-</p><p>dualised funding model is the reliance on referral or</p><p>for specific requests by people with intellectual disabil-</p><p>ities (or their advocates) that funding for Circles of Sup-</p><p>port be included in their support plan. Our findings</p><p>186 T. ARATEN-BERGMAN AND C. BIGBY</p><p>reveal the hidden costs of service outreach, currently</p><p>many hours are spent on developing marketing</p><p>materials, communicating with service providers, ser-</p><p>vice users and planners to explain the model of Circles</p><p>of Support, and reach out for potential participants.</p><p>As the NDIS matures, special consideration should be</p><p>given to the development of funding mechanisms to</p><p>ensure adequate resources for these activities as well</p><p>as for the overall success of Circle of Support programs.</p><p>Finally, although limited due to the size of the</p><p>sample, the reliance on purposeful sampling of pro-</p><p>grams and the self-selecting nature of the sample, our</p><p>findings provide preliminary evidence that Circles of</p><p>Support programs are successful in achieving their</p><p>desired goals. Both staff and circle members attributed</p><p>a range of positive outcomes to being involved in the</p><p>circle. However, an individualised approach will mean</p><p>that each circle is unique, and its purpose and dynamics</p><p>may change over time. Given these factors, success</p><p>needs to be measured both for each individual against</p><p>their own goals as well as the specific goals of the pro-</p><p>gram. Our analysis indicated the importance of employ-</p><p>ing individually referenced indicators of success such as</p><p>goal achievement, changes in quality of life, social</p><p>inclusion, social capital, the quantity, and quality of</p><p>interpersonal relationships and changing community</p><p>attributes (such as social capital and community cohe-</p><p>sion). The challenge is to develop robust and efficient</p><p>methods to capture the intended and unintended out-</p><p>comes from a circle from the perspectives on the person,</p><p>family and community. In addition, consideration</p><p>should be given to developing more robust methods</p><p>of evaluation using observations, and more rigorous</p><p>analysis of the costs and benefits over time.</p><p>Circles of Support may also be a mechanism that</p><p>builds community social capital, by enhancing the</p><p>level of trust, participation and relationships in that</p><p>community. Nevertheless, outcomes such as this remain</p><p>quite speculative, as impacts on broader community</p><p>attitudes and cohesion require very different indicators</p><p>of change to those used in this study.</p><p>Conclusions</p><p>The knowledge developed from this study can inform</p><p>future design of programs to support the development</p><p>and strengthening of the Circles of Support program.</p><p>In the current context of individualised funding and</p><p>person-centred practice, it may provide evidence to</p><p>inform service designers and funders about the cost</p><p>and types of effective programs. Setting out the common</p><p>characteristics and differences between programs will</p><p>also be useful to people with intellectual disabilities</p><p>and their families in making decisions about the plan-</p><p>ning and purchase of services. There is significant</p><p>room for further development of this material into</p><p>more accessible guides for professional interventions</p><p>aimed at informal support network development by</p><p>forming Circles of Support, providing information</p><p>and guidelines for people with intellectual disabilities,</p><p>their families, NDIS planners and local area</p><p>coordinators.</p><p>Disclosure statement</p><p>No potential conflict of interest was reported by the author(s).</p><p>Funding</p><p>This work was supported by Inclusion Melbourne.</p><p>ORCID</p><p>Tal Araten-Bergman http://orcid.org/0000-0003-4915-2729</p><p>Christine Bigby http://orcid.org/0000-0001-7001-8976</p><p>References</p><p>Bartnik, E. (2008). 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Jossey-Bass Publishers.</p><p>Yin, R. K. (2003). Case study research, design and methods.</p><p>Sage Publications.</p><p>JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY 189</p><p>https://doi.org/10.1111/jir.12143</p><p>https://doi.org/10.1111/j.1365-2788.2008.01144.x</p><p>https://doi.org/10.1111/j.1365-2788.2008.01144.x</p><p>https://doi.org/10.1352/1934-9556-51.01.022</p><p>https://doi.org/10.1111/jtsb.12168</p><p>https://doi.org/10.1111/jar.12275</p><p>https://doi.org/10.3109/13668250.2010.481784</p><p>https://doi.org/10.3109/13668250.2010.481784</p><p>https://doi.org/10.1177%2F1744629516637997</p><p>https://doi.org/10.1177%2F1744629516637997</p><p>Abstract</p><p>Circles of support</p><p>Study aims</p><p>Method</p><p>Design</p><p>Recruitment</p><p>Data collection</p><p>Data analysis and synthesis</p><p>Findings</p><p>Circles of support as family or service business</p><p>Program governance, size and scope</p><p>Program inputs</p><p>Program activities and processes</p><p>Output</p><p>Discussion</p><p>Conclusions</p><p>Disclosure statement</p><p>ORCID</p><p>References</p><p><<</p><p>/ASCII85EncodePages false</p><p>/AllowTransparency false</p><p>/AutoPositionEPSFiles false</p><p>/AutoRotatePages /PageByPage</p><p>/Binding /Left</p><p>/CalGrayProfile ()</p><p>/CalRGBProfile (Adobe RGB \0501998\051)</p><p>/CalCMYKProfile (U.S. Web Coated \050SWOP\051 v2)</p><p>/sRGBProfile (sRGB IEC61966-2.1)</p><p>/CannotEmbedFontPolicy /Error</p><p>/CompatibilityLevel 1.3</p><p>/CompressObjects /Off</p><p>/CompressPages true</p><p>/ConvertImagesToIndexed true</p><p>/PassThroughJPEGImages false</p><p>/CreateJobTicket false</p><p>/DefaultRenderingIntent /Default</p><p>/DetectBlends true</p><p>/DetectCurves 0.1000</p><p>/ColorConversionStrategy /sRGB</p><p>/DoThumbnails true</p><p>/EmbedAllFonts true</p><p>/EmbedOpenType false</p><p>/ParseICCProfilesInComments true</p><p>/EmbedJobOptions true</p><p>/DSCReportingLevel 0</p><p>/EmitDSCWarnings false</p><p>/EndPage -1</p><p>/ImageMemory 524288</p><p>/LockDistillerParams true</p><p>/MaxSubsetPct 100</p><p>/Optimize true</p><p>/OPM 1</p><p>/ParseDSCComments false</p><p>/ParseDSCCommentsForDocInfo true</p><p>/PreserveCopyPage true</p><p>/PreserveDICMYKValues true</p><p>/PreserveEPSInfo false</p><p>/PreserveFlatness true</p><p>/PreserveHalftoneInfo false</p><p>/PreserveOPIComments false</p><p>/PreserveOverprintSettings false</p><p>/StartPage 1</p><p>/SubsetFonts true</p><p>/TransferFunctionInfo /Remove</p><p>/UCRandBGInfo /Remove</p><p>/UsePrologue false</p><p>/ColorSettingsFile ()</p><p>/AlwaysEmbed [ true</p><p>]</p><p>/NeverEmbed [ true</p><p>]</p><p>/AntiAliasColorImages false</p><p>/CropColorImages true</p><p>/ColorImageMinResolution 150</p><p>/ColorImageMinResolutionPolicy /OK</p><p>/DownsampleColorImages true</p><p>/ColorImageDownsampleType /Bicubic</p><p>/ColorImageResolution 300</p><p>/ColorImageDepth -1</p><p>/ColorImageMinDownsampleDepth 1</p><p>/ColorImageDownsampleThreshold 1.50000</p><p>/EncodeColorImages true</p><p>/ColorImageFilter /DCTEncode</p><p>/AutoFilterColorImages false</p><p>/ColorImageAutoFilterStrategy /JPEG</p><p>/ColorACSImageDict <<</p><p>/QFactor 0.90</p><p>/HSamples [2 1 1 2] /VSamples [2 1 1 2]</p><p>>></p><p>/ColorImageDict <<</p><p>/QFactor 0.40</p><p>/HSamples [1 1 1 1] /VSamples [1 1 1 1]</p><p>>></p><p>/JPEG2000ColorACSImageDict <<</p><p>/TileWidth 256</p>/TileHeight 256
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