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OR I G I N A L AR T I C L E

Connecting locally: An examination of the role of service providers in supporting the social inclusion of adults with intellectual disabilities in their neighbourhoods

Geraldine Boland | Suzanne Guerin

UCD Centre for Disability Studies, UCD School of Psychology, University College Dublin, Dublin, Ireland

Correspondence Geraldine Boland, UCD Centre for Disability Studies, UCD School of Psychology, Newman Building, University College Dublin, Stillorgan Rd, Dublin DO4 F6X4, Ireland. Email: [email protected]

Abstract

Article 19 of the UN Convention on the Rights of People with Disabilities calls

for all people with disabilities to live independently and be included in their

community. Adults with intellectual disabilities may live in neighbourhoods,

but often have limited experience of social connectedness. This study aimed to

examine the role of service provider organisations in supporting social inclu-

sion in neighbourhoods of adults with intellectual disabilities. The understand-

ing of social inclusion locally for adults with intellectual disabilities was

explored and whether organisational policies (if any) had been drawn up to

guide the support actions of staff. A mixed methods design was employed, with

CEOs/service leaders of 40 service provider organisations completing an online

survey. Follow-up telephone interviews were completed with a randomised

sample. Data were analysed using descriptive statistics and qualitative content

analysis. Service leaders understood social inclusion to encompass purposeful

engagement that moved beyond mere physical presence. Individuals having a

sense of connection to place and belonging to people who live locally included

fostering mutually supportive connections with neighbours. Equality of access

to local services and supports were underscored. Active citizenship and service

provider/staff supports for a socially included life were highlighted. Almost all

service leaders rated the role of service providers at organisational/strategic

level as important. However, their values and beliefs revealed contrasting

views on the appropriate level of visibility of service providers when

supporting individuals. Close to two-thirds of service providers did not have an

organisational policy regarding social inclusion in neighbourhoods. Develop-

ing specific service policies on social inclusion in neighbourhoods, based on

the UNCRPD, and reflecting relevant national disability policies is proposed.

This may enhance strategic planning and service providers decision-making

List of Abbreviations and Acronyms: CEO, Chief Executive Officer; HSE, Health Service Executive; ID, Intellectual disability; SPSS, Statistical Package for the Social Sciences; UNCRPD, United Nations Convention on the Rights of People with Disability.

Received: 25 May 2021 Accepted: 7 March 2022

DOI: 10.1111/jppi.12419

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any

medium, provided the original work is properly cited and is not used for commercial purposes.

© 2022 The Authors. Journal of Policy and Practice in Intellectual Disabilities published by International Association for the Scientific Study of Intellectual and Develop-

mental Disabilities and Wiley Periodicals LLC.

288 J Policy Pract Intellect Disabil. 2022;19:288–299.wileyonlinelibrary.com/journal/jppi

on targeted resource allocation. Further implications for policy, practice and

research arising from this study are discussed.

KEYWORD S

community participation, intellectual disability, policy, service provision, social inclusion

INTRODUCTION

With an international trend to close residential institu- tions, adults with intellectual disabilities (ID) are more likely to live in ordinary localities. However, this does not always equate with social engagement, forming new relationships or having a sense of connection to place. Adults with ID engaging outside their homes has been variously titled community participation, community integration, social participation and more recently social inclusion. Reviews acknowledge community participa- tion as an unclear (e.g., Amado et al., 2013; Bigby, 2012) contested concept (Clifford-Simplican, 2019). Though fre- quently employed, community as a concept is somewhat nebulous and problematic. This may reflect an observa- tion by Cummins and Kim (2015) that the common use of the term community appeared to stem from dei- nstitutionalisation studies, in which the alternative loca- tion to segregated service buildings and campus settings was known by the catchall phrase—the community. Four reviews on this topic post-2012 favour the term social inclusion (Amado et al., 2013; Bigby, 2012; Cobigo et al., 2012; Overmars-Marx et al., 2014). However, the limitation of simply interpreting social inclusion as a binary between community presence and participation has been highlighted (Bigby & Wiesel, 2019). Simplican et al. (2015) proposed a broad ecological model of social inclusion incorporating the interaction between the life domains of interpersonal relationships and community participation. Building on this model, Meys et al. (2021) found that social inclusion is dynamic and evolves over time for individuals.

However, inclusion has been critiqued as a social pol- icy and service imperative for people with ID to assimi- late into mainstream society (Cummins & Lau, 2003; Hall, 2010; Meininger, 2010). In focusing on social inclu- sion at the level of neighbourhood, this study opted from the outset to focus on participation of individuals with ID in non-segregated spaces, in the ordinary flow of main- stream life, as understood in the UN Convention on the Rights of People with Disability (UNCRPD, 2006). Social inclusion as a concept helpfully embraces the complexity of interactions between personal characteristics and envi- ronmental factors (e.g., Cobigo et al., 2012). A synthesis by Bigby and Wiesel (2019) examined the concept of encounter in public places between adults with ID and

strangers, deepening understanding of the factors that enable or disrupt engagement. Designing local spaces through service initiatives intended to promote convivial encounters (Bigby & Wiesel, 2011, 2019) between people with and without disability, (e.g., neighbourhood gardens open to all; Bredewold, 2021), reveal encounter as a valu- able conceptualisation to guide practice on facilitating social inclusion at the level of neighbourhood. The encounter typology also acknowledges that shared identi- fication and becoming known may be based on common interests that do not involve engaging locally, for exam- ple, joining an online group of artists. Overmars-Marx et al. (2014) examined literature on social inclusion of adults with ID at the level of neighbourhood; however, clarity about what constituted neighbourhood was absent. Drawing from social geography literature, Kearns and Andrews (2009) propose that the conceptualisation of neighbourhood be rooted in the immediate surround- ings in which one's everyday life is lived.

Derived from the prior ID literature (e.g., Bigby & Wiesel, 2019; Cobigo et al., 2012), social inclusion in a neighbourhood for adults with ID is defined as active engagement with people and places that matter to an adult with ID in the immediate locality in which they live, based on individual preferences. This engagement may be achieved by being supported to become known by sight or by name in their neighbourhood, engage in valued social roles, have equal access to public goods and services and belong to a growing network of connections which may include family, mutually supportive neighbours, acquaintances and friendships. The experi- ence of being socially included in their neighbourhood for a person with ID is not static. With support to engage in convivial encounters, interactions and new experi- ences, identification with and attachment to place, with a sense of belonging may develop for the individual (Boland & Guerin, 2021).

Despite ambiguities in nomenclature, a broad conver- gence exists that social inclusion is generally positive, with some authors seeing it as a quality-of-life domain (e.g., Amado et al., 2013) and others identifying it as both a right and a goal for locally based services (Cobigo et al., 2012). Social inclusion of adults with ID in their neighbourhoods has been the subject of recent empirical research (e.g., Bredewold et al., 2016; Overmars-Marx et al., 2019). Article 19 of the UNCRPD (2006) specifically

SERVICE PROVIDERS SUPPORTING SOCIAL INCLUSION 289

calls for support to foster social inclusion. The influence of national government disability policies (e.g., U.K. Government, 2009) on service providers' policies and actions has received limited attention in the ID literature. The benefits trap as a barrier to employment, cutbacks to services, labour intensive accountability systems, service safety policies/curfew rules and scarcity of dedicated resources to mobilise individualised approaches, were all identified as barriers (Simplican et al., 2015). McConkey and Keogh (2014) found that to overcome barriers in shifting from traditional service models to those that might promote inclusion, senior managers understood that reform of existing systems and rigid work practices at all levels was necessary. While this study had a rela- tively small sample across a range of services for people with enduring mental health problems, physical and/or intellectual disabilities, authors signposted the service organisation as one of the central drivers of change.

The challenge of shifting from aspirations as under- stood in the UNCRPD (2006) to effective national disabil- ity strategies is a longstanding international problem (Flynn, 2011). For example, the National Disability Insur- ance Scheme (https://www.ndis.gov.au/) intended to pro- mote independent living and community participation for all Australians with disabilities, is a state-sponsored initiative that has met implementation challenges (e.g., Carney et al., 2019). In the context of this study, the specific influences, if any, of the UNCRPD (2006) and national disability policies in Ireland on service providers' policies on social inclusion in localities is unknown. Irish government policy confirmed the closure of congregate residential settings (Health Service Executive, 2011) and an active national implementation plan (HSE, 2016) was underway at the time this study took place. However, a trend of vacant places in congregate residential settings being refilled was confirmed in a longitudinal study based on the Irish National Intellectual Disability Data- base, signalling the undermining of this policy by service providers (McConkey & Craig, 2018). In tandem, imple- mentation of a policy titled New Directions on the reform of traditional segregated day services was underway, with an expectation that Irish service providers would forge inclusion in localities for adults with ID (HSE, 2012). The conceptualisations underpinning the policy were individualised support services, local inclusion and active citizenship reflecting the UNCRPD. This policy also included the objectives of supporting personal and social development, offering individuals a range of local oppor- tunities and having meaningful social roles. The policy further specified the goal of service providers building expertise in community development approaches. How- ever, while Ireland was identified as policy rich, the chal- lenge of implementation at service provider level had been identified (Linehan et al., 2014).

Examining the perspectives and experiences of those who lead services in supporting social inclusion in neighbourhoods, has received limited attention in the ID literature. No empirical study has exclusively examined the perceptions of CEOs of service organisations on organisational policy and strategy on social inclusion in localities. Examining a nationally representative sample of ID service providers serving adults living in a range of geographical locations, was a clear gap in empirical research on social inclusion in neighbourhoods for this population. The question of how CEOs/service leaders understood social inclusion in neighbourhoods and the organisational policies, if any, to guide strategy and staff practices, remained unexamined. The choice to sur- vey CEOs/service managers was based on the premise that they may be well positioned to comment on organisational policy.

This study aimed to examine the role of service pro- vider organisations as perceived by their CEOs/service leaders, in supporting social inclusion in neighbourhoods of adults with ID living in dispersed housing. The specific research questions included:

1. How do service providers understand social inclu- sion at a neighbourhood level for adults with ID?

2. What organisational policies, if any, have been drawn up to support social inclusion of adults with ID in their local area?

METHOD

Research design

This enquiry required both gathering of national data on organisational policies, in addition to exploring partici- pants' perspectives on this topic. An explanatory sequential mixed methods design (Creswell & Plano-Clarke, 2018) was adopted. An online survey combining quantitative and qualitative questions explored the beliefs and practice expe- riences of a large participant sample (Dillman et al., 2014) of 40 service leaders. The qualitative strand of semi- structured telephone interviews with a maximal variation random sample (Creswell, 2015) (15%, n = 6) allowed for more in-depth responses. Telephone, as opposed to face-to- face interviews, was chosen for the convenience of service leaders. Interviews lasted from 23 to 42 minutes. The mixed methods approach offered a rich integration of find- ings from which interpretations were drawn.

Participants and sampling

The population of interest to this study was CEOs (or alternative service leaders titles) of all Republic of

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Ireland organisations providing services to adults with ID living in dispersed housing (Mansell & Beadle- Brown, 2009), including continuing to live with family members. The Irish ID sector includes a mix of service provider types:

1. voluntary bodies receiving full state funding from the HSE, but also holding charitable status, with their own Boards of Directors (n = 49, 79.03%);

2. services directly funded and managed by the HSE (n = 8, 12.90%); and

3. private companies offering services, also receiving funding from the HSE (n = 5, 8.06%).

All services are bound by the national policies drawn up by the HSE (e.g., New Directions, 2015, focused on the reform of traditional day services) and the regulatory requirements for staffed residential services by the Health Information and Quality Authority (2013). The popula- tion details were assembled using publicly available sources, including names and titles of executive leaders in each organisation. A listing of voluntary bodies by a national representative organisation was also used (http://www.fedvol.ie). A total population of 62 was identified.

The question of what level of leader would be best placed to complete the survey was considered carefully. Options included the CEO or, in some of the larger organisations, senior service leaders who had a range of job titles. Inviting the CEOs of larger organisations may have been limiting, as their role may not lend itself to the level of detailed knowledge held by senior service leaders/managers. However, close to 60% of possibly participating organisations are smaller service providers with fewer layers of management. In these organisations the equivalent to a service manager may hold the title CEO or Service Director. Having considered the advan- tages and disadvantages of sampling choices, the CEO (or equivalent title) of each of the 62 organisations was invited to be a participant in the study, though all were offered the option of nominating a leader/manager as an alternative.

Forty-two service leaders consented (67.72%), with surveys completed in full by 40 (64.50%) respondents. Two partially completed surveys (3.22%, n = 2) were excluded. Service providers in 25 of 26 counties in the Republic of Ireland were represented in the sample. Over three quarters (77.5%, n = 31) of responses came from voluntary bodies, as shown in Table 1. Private providers and ID services managed directly by the HSE represented a smaller number of respondents (22.5%, n = 9). Survey respondents held mainly management roles with exam- ples of job titles including CEO, Director of Services or

Service Manager. As Table 1 shows, the smallest cluster was clinical leadership roles, for example, Nurse Manager.

Length of service in current roles varied, ranging from less than 12 months to 20+ years, as presented in Table 1. Over half of service leaders (n = 22, 55%) had been in their current roles between 5 and 20 years+. The average total length of service with the current employer was 14.90 years (SD 9.6).

TABLE 1 Survey respondents job titles, length of service and

service provider characteristics

Job title cluster n = 40 100%

Management roles 29 72.5

Social inclusion leadership roles 6 15

Clinical leadership roles 5 12.5

Length of service in current role n = 40 100%

Less than 5 years 18 45

Between 5 and 10 years 4 10

Between 10 and 15 years 6 15

Between 15 and 20 years 9 22.5

20+ years 3 7.5

Total length of service with current organisation

n = 40 100%

Less than 5 years 8 20

Between 5 and 10 years 1 2.5

Between 10 and 15 years 14 35

Between 15 and 20 years 9 22.5

20+ years 8 20

Service provider type of organisation n = 40 100%

Voluntary service providersa 31 77.5

HSE directly managed services and private providersb

9 22.5

Service provider size-number of adults with ID served

n = 40 100%

Fewer than 200 adults 20 50

Between 200 and 1500 adults 17 42.5

Over 1500 adults 3 7.5

Types of geographic locations served n = 40 100%

Town only 6 15

City/ suburbs only 6 15

Town, rural village and/or remote rural

7 17.5

City suburbs, town and/or village 5 12.5

All location types 16 40

aBoth types of voluntary service providers (designated Section 38 and Section 39, Health Act, 2007) have been combined to protect confidentiality. bThese two categories have been combined to protect confidentiality.

SERVICE PROVIDERS SUPPORTING SOCIAL INCLUSION 291

A high proportion of respondents (80%, n = 32) con- sented to be included in interviews from which six were randomly selected for a follow-up telephone interview. Five participated in follow-up interviews. As Table 1 identifies, there was a spread of organisational sizes, with half of the respondents serving smaller populations. Delivering services to people living in a mix of geographic locations was common, with 28 (70%) naming two to four of the area types specified. Fewer service providers (15%, n = 6) solely served adults with ID living in cities and their suburbs, with a similar number (15%, n = 6) serving town inhabitants only.

Procedure

Extensive pre-testing (Willis, 2016) of the online survey was completed using Qualtrics Research Core software (https://www.qualtrics.com/research-core/). Development included pre-testing with four stakeholders, including two former CEOs from the sector. The survey was advertised by the National Federation of Voluntary Service Providers to CEOs of member organisations. To launch the survey, a letter and detailed information sheet was emailed to each CEO of 62 service organisations. The timed sequential advertising strategy included using Twitter to offer reminders, and two follow-up phone calls to potential participants.

MATERIALS

The survey design was intentionally simple (Willis, 2016), to avoid any ambiguity and motivate participants to com- plete it. A range of question types were used, with a bal- ance maintained between single response closed questions, multiple-choice and open-ended questions, using the question order guidelines developed by Dillman and Edwards (2016). Open-ended questions allowed for free-text responses. For example, following a preamble, service leaders were asked: ‘Considering the adults with intellectual disabilities being supported in services that you lead; how would you best define what the concept of neighbourhood participation means? Please write three to four sentences on how you define neighbourhood par- ticipation, as you understand it for adults with intellec- tual disabilities who wish to participate’.

Five-point Likert scales were used to rate participant satisfaction or importance attributed to certain topics (e.g., rating of the role played by organisational strategy in supporting social inclusion). The survey length and sequence of questions followed multiple iterations, following pre-testing reviews by the stakeholders noted

above. Telephone interviews followed a topic guide, using a range of open-ended questions to seek more in- depth reflections based on the participants' practice experiences.

DATA ANALYSIS

Descriptive statistics were used to analyse the quantita- tive data, including the demographics of survey respon- dents and the service provider organisations. Both SPSS (IBM SPSS Statistics Version 24) and Excel programmes were used for analysis. Qualitative conventional content analysis (Hsieh & Shannon, 2005; Mayring, 2000) was employed to analyse the textual data responses to open- ended questions, using a predominantly inductive approach. No frequencies are reported for the inductive analysis as salience was driven by patterns of meaning identified as relevant to the research questions, with possible contrasts or contradictions sought within the data being analysed (Buetow, 2010). For one question, responses on how respondents defined neighbourhood participation for adults with ID, a combined deductive and inductive approach was employed. Text responses to this question were deductively analysed (Mayring, 2000) against a checklist of definition components from the prior literature. Original aspects of participants' definitions of neighbourhood participation were then extracted and analysed inductively. The practical aspects (e.g., shopping, leisure) drawn from 10 aspects of social inclusion detailed in Table 2 were identifiable through the deductive analysis. These 10 aspects were drawn from the definition of social inclusion outlined above. New aspects of how neighbourhood participation was defined were isolated for subsequent inductive analysis. For the transcripts of the telephone interviews and responses to open-ended survey questions (e.g., the role of organisational strategy), an inductive content analysis approach was used, allowing the more conceptual narra- tive content to be coded and clustered.

FINDINGS

Defining social inclusion in neighbourhoods

This section addresses the core question of how service providers understand and define social inclusion at a local level. Table 2 shows a breakdown of responses (n = 373) to the question of what aspects drawn from the prior literature should be included in a definition. Based on the deductive analysis, having a sense of connection

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to place, and belonging to people who live locally were the aspects that all respondents (n = 40) considered should be included in a definition of social inclusion in neighbourhoods.

Table 2 also indicates that adults with ID shopping and accessing health services in their neighbourhoods were included by the fewest respondents (n = 34; 85%). However, most respondents (n = 36; 90%) considered that 8 of the 10 aspects drawn from the prior literature were relevant to a definition of social inclusion in neighbourhoods.

For the data extracts that were inductively analysed, six clusters/units of meaning were identifiable. The first cluster related to equality of access in neighbourhoods to the same local services and supports as the general popu- lation, as expressed in some definitions. In this quote a participant underscores equality of access for adults with ID to what a neighbourhood offers people without disabilities:

How our organisation defines neighbourhood participation is that the same services that are available to members of the community that

do not have a disability are accessible to those that do, irrespective of the level of support required. This is true of all areas of the neighbourhood including recreation, leisure, shopping, education, transport, eating out etc. ID26

This was closely linked to the second cluster of defin- ing social inclusion in neighbourhoods as a spectrum, moving beyond presence to meaningful, purposeful engage- ment. Most participants underscored active engagement in localities at a range of levels that moved beyond phys- ical presence towards being respected and valued. Ser- vice leaders distinguished between adults with ID contributing through formal social roles locally (e.g., tidy towns volunteer) and informal social roles (e.g., helpful neighbour).

Neighbourhood participation can be seen as a spectrum where the added value of participa- tion increases when members of the neighbourhood add value to the community above being residentially or consumer present. At the most effective and meaningful end of that spectrum the footprint for participation is deeper and can be seen in relationships with neighbours and neighbourhood groups. People are missed if not present. ID2

Service leaders highlighted the informal social role of neighbour, proposing that connections be fostered with neighbours for mutual support. Some participants recognised the potential to build a sense of connection through simply making acquaintances but most valued a deeper engagement, for example, through exchange of favours or help at short notice:

Building relationships with the neighbours; - inviting them to house celebrations and looking after their neighbour's pets while they are away, and they in turn have agreed to be supportive to the individuals in the house if help is needed, e.g. fire alarm, they would respond and be supportive. ID36

The fourth cluster focused on active citizenship at local level, involving contributions to advocacy/decision- making on civic improvements for the locality. Highlight- ing the challenge of accessible transport in rural Ireland, one participant offered an example of local advocacy:

A self-advocacy group successfully advocated for a bus route to be changed ‘to position bus

TABLE 2 Aspects of social inclusion in neighbourhoods for

adults with ID drawn from prior literature

Ten definition aspects Responses N = 373

Total responses (%)

Having a sense of connection to the place

40 10.72

Having a sense of belonging with people who live locally

40 10.72

Being a member of local organisations (e.g., church group, club member)

39 10.46

Being known to see or by name in your locality

38 10.19

Knowing what is happening in the area

38 10.19

Having the choice to engage in voluntary work

37 9.92

Having family or friends living the locality that you see as often as you want

37 9.92

Engaging in leisure activities in the locality

36 9.65

Doing some of your shopping locally

34 9.12

Accessing some health services locally (e.g., G.P, dentist)

34 9.12

SERVICE PROVIDERS SUPPORTING SOCIAL INCLUSION 293

stops closer to houses where people with intel- lectual disability live’. ID18

Service provider/staff supports for a socially included life were noted, understanding choices regarding engage- ment in neighbourhoods in the widest context of individ- uals being supported to move towards self-directed lives fostering naturally occurring supports: ‘Where possible natural supports should be used but when necessary, staff should support individuals in a positive respectful and empowering way’. ID29

Finally, the opportunity to develop a definition of social inclusion in localities drew expressions of some ser- vice leaders' underpinning values and beliefs. Contrasting views were identifiable on the level of visibility of the ser- vice provider in its endeavours to support the social inclusion of adults with ID. The first indicates a strongly individualised approach to providing support for local engagement, with the second indicating a more promi- nent presence for the service provider in the locality for fundraising purposes.

The individual needs to be presented and “known” in his/her own right rather than as somebody associated with a particular service provider. ID37

We have open days in our services and invite locals to come and have a cup of tea with us. We fundraise and involve locals and can demonstrate how the funds raised are spent. ID17

Role of service provider organisational/ strategic support for social inclusion in localities

All bar one respondent (97.5%, n = 39) rated the role of service providers at organisational/strategic level in supporting social inclusion as important, either extremely important (65.5%, n = 25), very important (27.5%, n = 11) or important (7.5%, n = 3). Survey respondents were asked the open-ended question: How do think that service providers at an organisational/strategic level can best support adults with intellectual disabilities to partici- pate in their neighbourhoods?

References to service providers mission, ethos/values and strategic planning were included in an understanding of the service provider role. There were facets to service providers approaches, with survey respondents referencing conceptual frameworks which they titled variously as individualised or person-centred service approaches. Guid- ing theoretical frameworks such as O'Brien's principles

(O'Brien & Mount, 2015), social role valorisation (Wolfensberger, 2011) and a quality assurance system, were noted as influencing organisational strategic plan- ning as illustrated by a service leader:

The organisation based their quality and improvement action plan on this [title of quality assurance system for disability services]. Some of the priority actions identified are neighbourhood, which is community inclusion, mean- ingful roles in their local community and integra- tion. (ID36)

The importance of staff recruitment, training, deploy- ment and ongoing support was a second cluster of responses from both survey participants and telephone interviewees. Some service providers developing new ser- vice models adopted new staff management approaches. An interviewee detailed the complex process of deploy- ment of existing employees, sometimes involving trade union negotiations. Some service providers highlighted the creation of organisation-wide specialist jobs focused on fostering social inclusion in localities. A tension between service models based on groups of adults with ID being served together and service provider objectives for social inclusion in localities for individuals was noted, as illustrated by a survey respondent: ‘Our experience where people attend day services in large groups of say 20 with two staff, mean that involvement in the neighbourhood is often tokenistic’ (ID1). Staff recruitment strategies that reflected a commitment to social inclusion in neighbourhoods, included employing staff with per- sonal social networks in the localities served. Maximising staff availability through flexible rostering was noted as key to people being facilitated to pursue their individual interests, especially at evenings and weekends. Invest- ment was proposed in staff education on a range of suggested topics related to social inclusion in localities.

The third cluster focused on leadership and organisational structures to facilitate social inclusion in localities. Practices aligned organisational structures with commitment from management teams and/or boards of directors level down, to deliver on mission statements and strategic plans regarding social inclusion in localities. One service leader commented that to achieve staff rede- ployment for planned moves from a residential institu- tion to locally- based services, changes to the organisation's mission and vision statements were required: ‘… the new Board of Management ratified a new vision’ (ID27). Lobbying for scarce resources for needed services and improved accessibility was named as a role for service leaders, as were negotiations with funders to use funds flexibly to support local engagement. Scarce funding as a barrier was identified by one service leader as a challenge to further development of service models that would locate homes in a neighbourhood: ‘One of the

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barriers, one of the very clear barriers for us in developing this [supported living model] is the funding coming through to support people’. (ID29) Tangible practice actions were named, such as how service locations were chosen, to ensure physical accessibility to a range of local amenities. Some ID service providers saw a role in edu- cating the general population on accessibility and accom- modation of the needs of adults with ID, without constant reliance on specialist staff. Forming strategic partnerships with both statutory bodies and non-funded local groups was suggested. The practice was described of sourcing mainstream leaders with influence in a locality who hold reputations for getting things done, in order to foster opportunities for individuals with ID. Forming strategic partnerships was described as a change in prac- tice for ID service providers, as illustrated by the sugges- tion of one service director:

Offer the expertise and involvement at all levels of com- munity and neighbourhood planning. This means a shift away from [service provider] operations behind service gates and strategically placing themselves within communi- ties. Having a presence near or with areas where neighbourhood activities or decision makers are, is key. ID22

Organisational policies on social inclusion in neighbourhoods

On the question of what organisational policies if any, had been developed to support social inclusion of adults with ID in their neighbourhoods, just under two-thirds of respondents (65%, n = 26) confirmed that their service did not have a specific policy in place, with two partici- pants (5.13%, n = 2) unsure. As Table 3 shows, a small proportion of participants (27.5%, n = 11) named a total of 14 service/organisation wide policy titles related to social inclusion in neighbourhoods. The most common policy cited was New Directions (HSE, 2012). Remaining service providers within this subset had developed a range of single organisational policies supporting either general or specific aspects of social inclusion (e.g., supporting church attendance).

A single respondent (2.5%, n = 1) did not include spe- cific policy titles, noting: ‘we have a number of policies and our strategic plan also has a strong community pres- ence contained within it’. ID17

DISCUSSION

This study examined how service leaders in Ireland understand social inclusion at a neighbourhood level for

adults with ID and whether service providers had specific policies to guide practice. The understanding of social inclusion in localities reflected existing conceptual frame- works on what is variously known as social inclusion, community participation or social participation (Cobigo et al., 2012; Simplican et al., 2015) and underpinning values (O'Brien & Lyle, 1987a, 1987b). Elements of the conceptualisation of ‘encounter’ (Bigby & Wiesel, 2011) were implied, for example the aspect of being known to see or by name in a locality. This included interactions between neighbours with and without ID (Dijker et al., 2011). Service leaders also confirmed the compo- nents of general social inclusion for adults with ID defined by Cobigo et al. (2012) as relevant, including belonging to a social network of family and friends, in which one receives and contributes support. Other aspects found in the conceptual literature were endorsed, such as being supported to become a member of local

TABLE 3 Service provider policy titles on social inclusion in

neighbourhoods

Specific policy titles

Number of respondents (n = 11) specifying specific policy titles (n = 14)

Percentage of all policy titles specified (100%, n = 14)

‘New Directions: review of HSE day services and implementation plan 2012–2016’

5 35.71

Community participation/ inclusion policy

3 21.44

Individual planning policy/person-centred planning

2 14.29

Residents support for church attendance policy

1 7.14

Service user involvement policy

1 7.14

Natural supports policy 1 7.14

Personal support services for adults with disabilities

1 7.14

Note: Where responses clearly identified a common policy title, they have been collapsed and the cumulative frequency has been given. One service

provider listed a combination of three policies supporting social inclusion in neighbourhoods: ‘New Directions’, ‘Personal Support Services for Adults with Disabilities’ and ‘Person Centred Planning’. Another service provider named two policies that support neighbourhood participation titled: ‘Natural Supports Policy’ and ‘Individual Planning Policy’.

SERVICE PROVIDERS SUPPORTING SOCIAL INCLUSION 295

leisure clubs and organisations (e.g., Wilson et al., 2010) and having the opportunity to contribute through social roles (Lemay, 2006), such as local volunteer. Consistent with prior conceptualisations, this survey also found that service leaders emphasised equality of access to local ser- vices and supports (Cobigo et al., 2012), and the fostering of mutual support as neighbours (Dijker et al., 2011). It also included a focus on active citizenship at a local level, a concept found in a broader conceptualisation of social inclusion for adults with ID (Simplican et al., 2015).

In defining social inclusion in neighbourhoods, con- trasting beliefs were traceable among service leaders on the level of visibility of the service provider organisation that was desirable when supporting people to be included locally. This reflects in part Hall's (2010) cri- tique of social inclusion and his proposal that it be superseded by the concept of belonging in activities of inclusion in whatever spaces (segregated or mainstream) that are chosen by adults with ID themselves. However, some attested that group-based services led to tokenistic local involvement for adults with ID. Adding to the defi- nition of broader social inclusion offered by Cobigo et al. (2012), this study found that all service leaders consid- ered that both connection with place and having a sense of belonging with people who live locally, should be included in a definition of social inclusion in neighbourhoods for adults with ID. There was no dis- cernible variation between service providers by size or funding type in how service leaders defined social inclu- sion. However, a more in-depth process evaluation of how social inclusion is supported in frontline practice may expose more variation between the three service provider types participating in this study. Other than the contrasting beliefs regarding the level of visibility of ser- vice providers in the lives of individuals with ID, service leaders surveyed indicated an understanding of social inclusion at a local level that is broadly reflected in the prior literature.

While service leaders definitions were consistent with the literature, the second research question considered whether service providers had specific organisational policies in place to support social inclu- sion in neighbourhoods. This study found that specific policies on social inclusion in neighbourhoods for adults with ID were not common practice. A possible interpre- tation may in part be the assertion by a small number of respondents that social inclusion was included in other related service policies, or that a national day service reform policy was being followed, for example, New Directions (HSE, 2012). It is possible that a focus on social inclusion was merged with other priorities in the support work such as housing and finances as found by Meys et al. (2021) and/or ensuring general quality

standards in service provision. A major influence on Irish service providers for adults with ID since 2013 was the publication of standards for people with disabilities in residential settings (Health Information and Quality Authority, 2013). Registration of designated centres, pre- paring for inspection visits and responding to recom- mendations on safety and governance, has been a strong and time-consuming focus in the Irish ID sector since 2012/2013. One of the inspection themes is person- centred services; however, social inclusion is not specifi- cally examined.

Despite the absence of policy, organisational strategic support for social inclusion in neighbourhoods was rated by almost all service leaders as important. Some services referenced guiding theoretical frameworks as embedded in their mission statements: (O'Brien & Lyle, 1987a, 1987b; Wolfensberger, 2011). Others claimed that social inclusion in neighbourhoods was included in strategic plans. Despite these assertions, McCausland et al. (2016) found that a nationally representative sample of older Irish adults with ID had much lower rates of social connectedness, partici- pation and inclusion than their general population coun- terparts. Developing policies on social inclusion in neighbourhoods is a starting point to organisational clarity which guides decision-making on resources to support it, as well the actions of frontline staff and managers.

STRENGTH AND LIMITATIONS

The choice of mixed-method survey was effective, with the addition of follow-up telephone interviews. Testing the survey content, the advance information materials and the operational procedures for launching the survey with stakeholders with experience of data collection from this sector lent authenticity to the study. Content analysis was applied with consistency and checking credibility added to the trustworthiness of the process. The analysis included actively challenging an interpretation of the data to include contrasting views among participants. The mixed methods approach also had the advantage of offering a rich integration of findings from both the sur- vey and the telephone interviews from which interpreta- tions were drawn. A key strength was reaching a large geographically-dispersed national sample using a cost- effective online survey, in a relatively short timeframe. This survey attracted a reasonable response rate. Interest in the ID sector on the topic of social inclusion in neighbourhoods may be inferred from the high rate of full survey completion (64.5%) and the 80% of respon- dents who consented to be included in the selection pool for follow up interview. The Irish ID service context is complex, as reflected in service provider size, funding

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category and geographic localities served. A strength of the study was that the sample reflected the range of ser- vice provider types, including the more recently devel- oped private sector. Service providers operating in 25 of 26 Republic of Ireland counties were represented. Although clear categories of leadership roles were dis- cernible, respondents' job titles varied considerably, rais- ing a potential question about the homogeneity of the sample. However, a strength was that the CEOs/service leaders responding were long-standing, highly experi- enced staff. On balance, this sample can be taken to be representative of the range of service providers for adults with ID in the Republic of Ireland, lending ecological validity to the enquiry.

POLICY, PRACTICE AND RESEARCH IMPLICATIONS

Developing specific organisational policies on social inclu- sion in neighbourhoods is a starting point to strategic planning and decision making on resource allocation. Given that two-thirds of service providers had none, clear policies that are linked to recruitment, training (Zakrajsek et al., 2014) and service quality (McEwen et al., 2021) may positively influence the actions of frontline staff and man- agers shifting from an ethos of care and protection to facil- itation of local engagement (Overmars-Marx et al., 2017). Such policies would usefully include overall service deliv- ery objectives on social inclusion and guidelines on geo- graphic location of services to maximise opportunities for engagement. There is scope for policies to be informed by the UNCRPD (2006) and relevant national policies from decongregation (HSE, 2011) to reform of day services (HSE, 2012, 2015). However, considering organisational restrictions to supporting social inclusion merits enquiry, from the perspectives of adults with ID and their families, frontline staff and team leaders tasked with implementing new service models. This may be achieved in part by inde- pendent service provider-level evaluations (Guerin et al., 2017) on social inclusion initiatives. Further recommenda- tions for practice on social inclusion in the Irish context include focused person-centred planning, expanding the range of social roles for adults with ID and engaging fam- ily members as community connectors (Boland, 2020).

Unknown at the outset of this study was that some service providers had created dedicated staff roles which carried cross-organisational responsibility for opening up social inclusion opportunities. The survey did not allow for the examination of these roles and they are not exam- ined in the prior literature. A recommendation for fur- ther research is an enquiry into the scope of these roles and the practice knowledge of the post holders as local

connectors across a range of neighbourhood and locality types. Further examination of the impact of geographic location (urban, suburban, town and rural) on the oppor- tunities for neighbourhood engagement for adults with ID is proposed from the practice experiences of these spe- cialist social inclusion staff.

CONCLUSION

To the best of the authors' knowledge, this is the first study with a national sample of CEOs/service leaders spanning all ID service provider types. Operating outside of traditional organisational boundaries, the potential exists for service providers to create strategic partnerships with mainstream bodies already promoting social inclu- sion for the general population. While this study was located in Ireland, its findings as a national study of ser- vice providers may be considered relevant to other coun- tries in transition from serving adults with ID in congregate or campus settings to locally-based services intended to foster social inclusion.

AUTHOR CONTRIBUTIONS Geraldine Boland completed the study. Suzanne Guerin provided supervision to the thesis. Both authors collabo- rated in the preparation of this manuscript.

ACKNOWLEDGEMENTS This study was completed by Geraldine Boland in partial fulfilment for the award of Doctor of Philosophy. The study was one of three studies completed by Geraldine Boland, who was self-funded. Open access funding pro- vided by IReL. [Correction added on 18 May 2022, after first online publication: IReL funding statement has been added.]

CONFLICTS OF INTEREST The authors declare no conflicts of interest.

ETHICS STATEMENT This study was granted approval based on full review by the Human Research Ethics Committee at University College Dublin (HS-18-75-Boland-Guerin), thus ensuring that the research adhered to national ethical standards. The study was also granted approval by the institutional ethics board of one of the participating service provider organisations.

ORCID Geraldine Boland https://orcid.org/0000-0002-4692- 1812 Suzanne Guerin https://orcid.org/0000-0002-6744-7590

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REFERENCES Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P.

(2013). Social inclusion and community participation of indi- viduals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 360–375. https://doi.org/ 10.1352/1934-9556-51.5.360

Bigby, C. (2012). Social inclusion and people with intellectual dis- ability and challenging behaviour. A systematic review. Journal of Intellectual and Developmental Disability, 37(4), 360–374. https://doi.org/10.3109/13668250.2012.721878

Bigby, C., & Wiesel, I. (2011). Encounter as a dimension of social inclusion for people with intellectual disability: Beyond and between community presence and participation. Journal of Intellectual and Developmental Disability, 36(4), 259–263. https://doi.org/10.3109/13668250.2011.619166

Bigby, C., & Wiesel, I. (2019). Using the concept of encounter to fur- ther the social inclusion of people with intellectual disabilities: What has been learned? Research and Practice in Intellectual and Developmental Disabilities, 6(1), 39–51. https://doi.org/10. 1080/23297018.2018.1528174

Boland, G. (2020). Connecting locally: Examining the factors that support the social inclusion in neighbourhoods of adults with intellectual disabilities. (Doctoral dissertation, University Col- lege Dublin).

Boland, G., & Guerin, S. (2021). Connecting locally: The role of adult siblings in supporting the social inclusion of adults with intellectual disabilities. British Journal of Learning Disabilities, 00, 1–14. https://doi.org/10.1111/bld.12404

Bredewold, F. (2021). Struggling with sameness and strangeness: (Non)-encounters between people with and without intellectual disabilities in two Dutch neighbourhoods. Journal of Intellec- tual & Developmental Disability, 46(1), 15–25. https://doi.org/ 10.3109/13668250.2020.1851929

Bredewold, F., Tonkens, E., & Trappenburg, M. (2016). Urban encounters limited: The importance of built-in boundaries in contacts between people with intellectual or psychiatric disabil- ities and their neighbours. Urban Studies, 53(16), 3371–3387. https://doi.org/10.1177/0042098015616895

Buetow, S. (2010). Thematic analysis and its reconceptualization as 'saliency analysis'. Journal of Health Services Research & Policy, 15(2), 123–125. https://doi.org/10.1258/jhsrp.2009. 009081

Carney, T., Then, S., Bigby, C., Wiesel, I., & Douglas, J. (2019). National disability insurance scheme plan decision-making: Or when tailor-made case planning met Taylorism and the algo- rithms? Melbourne University Law Review, 42(3), 780–812. https://law.unimelb.edu.au/mulr/issues/previous-issues/ 201819-volume-42

Clifford-Simplican, S. (2019). Theorising community participation: Successful concept or empty buzzword? Research and Practice in Intellectual and Developmental Disabilities, 6(2), 116–124. https://doi.org/10.1080/23297018.2018.1503938

Cobigo, V., Ouellette-Kuntz, H., Lysaght, R., & Martin, L. (2012). Shifting our conceptualization of social inclusion. Stigma Research and Action, 2(2), 75–84. http://stigmaj.org/article/ view/45

Creswell, J. W. (2015). A concise introduction to mixed methods research. SAGE Publications.

Creswell, J. W., & Plano Clark, V. L. (2018). Designing and con- ducting mixed methods research (3rd ed.). SAGE Publications.

Cummins, R., & Kim, Y. (2015). The use and abuse of ‘community’ and ‘neighbourhood’ within disability research: An exposé, clarification, and recommendation. International Journal of Developmental Disabilities, 61(2), 68–75. https://doi.org/10. 1179/2047386914Z.00000000089

Cummins, R. A., & Lau, A. L. D. (2003). Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16(2), 145–157. https://doi. org/10.1046/j.1468-3148.2003.00157.x

Dijker, A., van Alphen, L., Bos, A., van den Borne, B., & Curfs, L. (2011). Social integration of people with intellectual disability: Insights from a social psychological research programme. Jour- nal of Intellectual Disability Research, 55(9), 885–894. https:// doi.org/10.1111/j.1365-2788.2011.01446.x

Dillman, D., & Edwards, M. (2016). Designing a mixed-mode sur- vey. In C. Wolf, D. Joye, T. Smith, & Y. Fu (Eds.), The sage handbook of survey methodology (pp. 255–268). SAGE Publishing.

Dillman, D., Smyth, J., & Christian, L. (2014). Internet, phone, mail, and mixed-mode surveys: The tailored design method (4th ed.). Wiley.

Flynn, E. (2011). From rhetoric to action: Implementing the UN con- vention on the rights of persons with disabilities. Cambridge Uni- versity Press. https://doi.org/10.1017/CBO9780511996405

Guerin, S., Hayes, N., & McNally, S. (Eds.), (2017). Research and evaluation in community, health and social care settings: Experi- ences from practice. Routledge.

Hall, E. (2010). Spaces of social inclusion and belonging for people with intellectual disabilities. Journal of Intellectual Disability Research, 54(s1), 48–57. https://doi.org/10.1111/j.1365-2788. 2009.01237.x

Health Information and Quality Authority (HIQA). (2013). National standards for residential services for children and adults with disabilities. https://www.hiqa.ie/reports-and- publications/standard/national-standards-residential-services- children-and-adults

Health Service Executive (HSE). (2011). Time to move on from con- gregated settings: A strategy for community inclusion. https:// www.hse.ie/eng/services/list/4/disability/congregatedsettings/ time-to-move-on-from-congregated-settings-%E2%80%93-a- strategy-for-community-inclusion.pdf

Health Service Executive (HSE). (2012). New directions: Review of HSE day services and implementation plan, 2012–2016. http:// www.hse.ie/eng/services/publications/Disability/ newdirections2012.pdf

Health Service Executive (HSE). (2015). New Directions: Interim standards for new directions services and supports for adults with disabilities. https://www.hse.ie/eng/services/list/4/ disability/newdirections/interim%20standards%20for%20new %20directions%20report.pdf

Health Service Executive (HSE). (2016). Transforming lives. Supporting person-centred disability services: Progress report. http://www.hse.ie/eng/services/publications/Transforming- lives-Progress-Report-2016.pdf

Hsieh, H., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687

Kearns, R., & Andrews, G. (2009). Geographies of wellbeing. In I. S. Smith, R. Pain, S. A. Marston, & J. P. Jones, III (Eds.), The sage

298 BOLAND AND GUERIN

handbook of social geographies (pp. 309–328). SAGE Publications.

Lemay, R. (2006). Social role valorisation insights into the social integration conundrum. Mental Retardation, 44(1), 1–12. https://doi.org/10.1352/0047-6765(2006)44[1:SRVIIT]2.0.CO;2

Linehan, C., O'Doherty, S., Tatlow-Golden, M., Craig, S., Kerr, M., Lynch, C., McConkey, R., & Staines, A. (2014). Moving ahead: Mapping the national disability policy landscape. Health Research Board and Trinity College Dublin. http://www.fedvol. ie/_fileupload/Moving%20Ahead%20Policy%20Report%2018th %20August%202014.pdf

Mansell, J., & Beadle-Brown, J. (2009). Dispersed or clustered hous- ing for disabled adults: A systematic review. Journal of Intellec- tual and Developmental Disability, 34(4), 313–323. https://doi. org/10.3109/13668250903310701

Mayring, P. (2000). Qualitative content analysis. Forum: Qualitative Social Research, 1(2), 20. https://doi.org/10.17169/fqs-1.2.1089

McCausland, D., McCallion, P., Cleary, E., & McCarron, M. (2016). Social connections for older people with intellectual disability in Ireland: Results from wave one of IDS-TILDA. Journal of Applied Research in Intellectual Disabilities, 29(1), 71–82. https://doi.org/10.1111/jar.12159

McConkey, R., & Craig, S. (2018). Change over 12 years in residen- tial provision for adult persons with intellectual disabilities in Ireland. Tizard Learning Disability Review, 23(1), 1–7. https:// doi.org/10.1108/TLDR-01-2017-0001

McConkey, R., & Keogh, F. (2014). Transforming organisations to deliver more personalised housing and accommodation sup- ports in disability and mental health services. Administration, 62(1), 91–118.

McEwen, J., Bigby, C., & Douglas, J. (2021). What is good service quality? Day service staff's perspectives about what it looks like and how it should be monitored. Journal of Applied Research in Intellectual Disabilities, 34(4), 1118–1126. https://doi.org/10. 1111/jar.12871

Meininger, H. P. (2010). Connecting stories: A narrative approach of social inclusion of persons with intellectual disability. Alter, 4(3), 190–202. https://doi.org/10.1016/j.alter.2010.04.001

Meys, E., Hermans, K., & Maes, B. (2021). The role of professionals in strengthening social relations of adults with a disability in independent supported living: Practices and influencing fac- tors. Journal of Intellectual & Developmental Disability, 46(2), 150–163. https://doi.org/10.3109/13668250.2020.1786963

O'Brien, J., Lyle, C. (1987a). A framework for accomplishment. Decatur, GA: Responsive Systems Associates.

O'Brien, J., Lyle, C. (1987b). Framework for accomplishment: A workshop for people developing better services. Decatur, GA: Responsive Systems Associates.

O'Brien, J., & Mount, B. (2015). Pathfinders: People with develop- mental disabilities and their allies building communities that work better for everybody. Inclusion Press.

Overmars-Marx, T., Thomése, F., & Meininger, H. (2017). Social inclusion in the neighbourhood and the professional role iden- tity of group home staff members: Views and experiences of staff regarding neighbourhood social inclusion of people with

intellectual disabilities. Society, Health & Vulnerability, 8(1), 1395676. https://doi.org/10.1080/20021518.2017.1395676

Overmars-Marx, T., Thomése, F., & Meininger, H. (2019). Neighbourhood social inclusion from the perspective of people with intellectual disabilities: Relevant themes identified with the use of photovoice. Journal of Applied Research in Intellec- tual Disabilities, 32(1), 82–93. https://doi.org/10.1111/jar.12511

Overmars-Marx, T., Thomese, F., Verdonschot, M., & Meininger, H. (2014). Advancing social inclusion in the neighbourhood for people with an intellectual disability: An exploration of the lit- erature. Disability and Society, 29(2), 255–274. https://doi.org/ 10.1080/09687599.2013.800469

Simplican, S. C., Leader, G., Kosciulek, J., & Leahy, M. (2015). Defining social inclusion of people with intellectual and devel- opmental disabilities: An ecological model of social networks and community participation. Research in Developmental Dis- abilities, 38, 18–29. https://doi.org/10.1016/j.ridd.2014.10.008

U.K. Government. (2009). Valuing people now: A new three-year strategy for learning disabilities. Department of Health. http:// webarchive.nationalarchives.gov.uk/20130105064234/http:/ www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/ documents/digitalasset/dh_093375.pdf

United Nations Convention on the rights of persons with disabilities. (2006). https://www.un.org/development/desa/disabilities/ convention-on-the-rights-of-persons-with-disabilities/ convention-on-the-rights-of-persons-with-disabilities-2.html

Willis, G. (2016). Questionnaire pretesting. In C. Wolf, D. Joye, T. Smith, & Y. C. Fu (Eds.), The sage handbook of survey methodol- ogy (pp. 359–381). SAGE Publications.

Wilson, N. J., Stancliffe, R. J., Bigby, C., Balandin, S., & Craig, D. (2010). The potential for active mentoring to support the transi- tion into retirement for older adults with a lifelong disability. Journal of Intellectual and Developmental Disability, 35(10), 211–214. https://doi.org/10.3109/13668250.2010.481784

Wolfensberger, W. (2011). Social role valorisation: A proposed new term for the principle of normalisation. Intellectual and Devel- opmental Disabilities, 49(6), 435–440. https://doi.org/10.1352/ 1934-9556-49.6.435

Zakrajsek, A. G., Hammel, J., & Scazzero, J. A. (2014). Supporting people with intellectual and developmental disabilities to par- ticipate in their communities through support staff pilot inter- vention. Journal of Applied Research in Intellectual Disabilities, 27(2), 154–162. https://doi.org/10.1111/jar.12060

How to cite this article: Boland, G., & Guerin, S. (2022). Connecting locally: An examination of the role of service providers in supporting the social inclusion of adults with intellectual disabilities in their neighbourhoods. Journal of Policy and Practice in Intellectual Disabilities, 19(3), 288–299. https://doi.org/10.1111/jppi.12419

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