Social justice and rights

FIND A SOLUTION AT Academic Writers Bay

O R I G I N A L A R T I C L E
Theme 1: Social justice and rights
The role of ‘natural supports’ in
promoting independent living
for people with disabilities; a
review of existing literature
Carmel Duggan, WRC Social and Economic Consultants Ltd, Strand House, 22 Great Strand Street,
Dublin 1, Ireland, and Christine Linehan, 3-4 Foster Place, School of Social Work & Social Policy,
Trinity College Dublin, Dublin 2, Ireland and Tizard Centre, University of Kent, Kent, Canterbury CT2 7LR,
UK (E-mail: Christine.linehan@tcd.ie)
Accessible summary This paper is a summary of research on the support people with disabilities get from
their friends and family. The research is mostly about people with intellectual
disabilities, but there is also some research on people with other disabilities. The
main findings in the research are as follows:
• People with intellectual disabilities have small groups of supporters. These
supporters are family, friends with intellectual disability and people who work in
services.
• People with disabilities say that services could provide more support for making
and keeping friends.
• There are projects that have helped people with disabilities make friends and be a
part of their community. More research is needed on these projects.
• Policy makers, services and other people who deliver services should put more
efforts into supporting people with disabilities to make friends in their community.
Summary The purpose of this review was to identify the available evidence base on role of
natural supports in promoting independent living for people with disabilities. A
search of peer-reviewed literature identified 30 core papers and 16 contextual papers
which addressed issues relating to natural supports and their role in facilitating
independent living. The papers reveal that the evidence base is limited and focuses
heavily on the social networks of people with intellectual disabilities, which typically
comprise family, other people with disabilities using services and staff members.
People with disabilities themselves call for greater support in establishing and
maintaining social relationships in the community. Some initiatives such as peerbased support and befriending schemes are reviewed, mindful that few have been
formally evaluated. The issue for policy makers is whether, following decades of
deinstitutionalisation, efforts to physically locate people with disabilities within their
local communities have come at the price of social inclusion.
This paper is an edited summary of a review of the literature commissioned by the National Disability Authority, the statutory body in
Ireland with responsibility for advising Government on disability issues. The full review of the literature may be accessed from
www.nda.ie.
ª 2013 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 41, 199–207 doi:10.1111/bld.12040
British Journal of
Learning Disabilities
The Official Journal of the British Institute of Learning Disabilities
Keywords Independent living, intellectual disability, literature review, natural supports
Introduction
This literature review identifies the available evidence
base on the role of natural supports in promoting
independent living for people with disabilities. The review
was undertaken at a time of significant reform within Irish
disability services. In 2012, the Irish Government set aside
just over €1.5 billion euro for the provision of disabilityspecific services, much of which is allocated to support
approximately 60 000 individuals with intellectual, physical or sensory disabilities (Doyle 2012; Health Service
Executive 2012a; Kelly 2012). The effectiveness of these
disability-specific services has, however, come under
recent scrutiny reflecting both national and international
pressures including the raised expectations of those who
provide and avail of services (National Disability Authority 2010) and Ireland’s obligations as a signatory to the
UN Convention on the Rights of People with Disabilities
(Quinn 2009).
Within the context of proposed reform to the sector, the
contribution of natural support has been mooted in several
recent Irish policy documents, all of which promote a move
towards more personalised services (Health Service Executive 2011, 2012b). The most influential of these, a Value for
Money and Policy Review of Disability Services conducted
by the Department of Health, was recently advised by their
Expert Reference Group to consider the potential role of
natural supports in their reframing of disability service
provision. Natural supports were defined by the Expert
Reference Group as comprising ‘extended family, friends,
neighbours’ and, in conjunction with family, were deemed
‘the first line of supports, followed by informal and
community supports, to formalised individual supports’
(Department of Health 2011; p.15). The Expert Reference
Group advised that ‘support systems make appropriate use
of family and community supports and mainstream services, resulting in a more cost-effective system’ (Department
of Health 2011; p.62).
It is within this context of substantial reform of the
disability sector in Ireland that the existing evidence base on
the role of natural supports in promoting independent
living is examined. As Ireland moves towards a model of
disability support services based on personalised, community-based supports which promote natural supports, it is
timely to ask; what do we know from the literature about
natural supports, and in particular, their potential to
facilitate independent living?
Methodology
Determining the search criteria
Definitions for natural supports, independent living and
people with disabilities were agreed at the commencement of
the literature search. Natural supports were loosely defined
as individuals who provide informal and unpaid support for
persons with disabilities within their local communities,
noting that the review would likely provide more explicit
definitions. Independent living was defined as people with
disabilities ‘having choice and control over the support they
need to go about their daily lives and any practical assistance
being based on their own choices and aspirations’. Material
relating to ‘natural supports’ within the context of supported
employment was specifically excluded on the basis that this
material referred to a distinct role for co-workers supporting
colleagues with disabilities and did not directly apply to
independent living. Finally, people with disabilities were
defined as those with physical, sensory, intellectual or
cognitive disabilities. Parameters of the literature search
were that it would be confined to peer-review material
published after 1990, in the English language, and relate to
the jurisdictions of the Republic of Ireland, Northern Ireland,
Great Britain, USA, Australia and Canada.
An initial literature search using the terms ‘Natural
Supports’ and ‘Natural Community Supports’ quickly
revealed that very little material was published within the
past twenty years using these terms per se, or in relation to
independent living outside of the domain of employment.
For this reason, the scope of the search was broadened and a
new search conducted using the term ‘social networks/
social support’ as a substitute for ‘natural supports’. The
rationale for the newer terms included evidence that social
networks are a vehicle through which informal support
might be exchanged (Bigby 2008) and that these networks
are ‘operational structures’ for a range of relationships
which may provide support (Forrester-Jones et al. 2006).
A second search, twinning the terms ‘social networks/
social support’ with ‘independent living’, returned a
substantial volume of literature; however, a preliminary
review revealed that much of this material fell outside of the
scope of interest, with a proportion again concentrating on
employment. A replacement term for ‘independent living’
was proposed using three common elements of independent living; productive activity (e.g. employment, education), household activity (e.g. domestic activity) and
ª 2013 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 41, 199–207
200 C. Duggan and C. Linehan
community participation (e.g. leisure) (Fox-Harker et al.
2002). ‘Community participation’ was identified as the most
relevant substitute for ‘independent living’ on the basis that
the remaining two elements were either beyond the remit of
the study (productive activity) or were known to be
neglected areas of research (domestic activity; Verdonschot
et al. 2009). To maximise the likelihood of sourcing relevant
material, the term ‘social inclusion’ was included along with
‘community participation’ as a proxy for ‘independent
living’. The search terms ‘social networks’, ‘social support’,
‘community participation’ and ‘social inclusion’ were thus
deemed as suitable proxies for ‘natural supports’ and
‘independent living’, reflecting existing literature linking
these concepts (McVilly et al. 2006a).
A search of these four terms produced a vast body of
literature, addressing themes such as the meaning and
reality of community inclusion and the scale and composition of social networks. The search also identified a number
of community initiatives, such as befriending, which facilitate social inclusion but which were not directly published
within the peer-reviewed literature. A significant proportion of this material commented on the potential, as
opposed to the actual, role of natural supports in facilitating
independent living and could therefore be considered
beyond the scope of the search. This material was, however,
deemed highly relevant to policy makers and service
providers as they consider the development of new service
arrays, and so, the search was extended to include this
material but was restricted to material from 2000, as
opposed to the original criterion of material post-1990, to
compensate for the larger volume of material.
The final search, following extensive discussion to source
the most relevant material, thus comprised four search
terms, ‘social networks’, ‘social support’, ‘community participation’ and ‘social inclusion’ and included material,
published in the English language, from all jurisdictions
post-2000, which made reference to the potential or role of
natural supports in promoting independent living for
people with disabilities.
Undertaking the search
The principle search engines used in the preliminary
searches were ERIC, INFOMINE, OPENJGATE and Directory of Open Access Journals (DOAJ). Of these, ERIC
proved most useful and was the most frequently used.
Searches using the final agreed criteria were undertaken by
searching the online directories of those journals which
featured most prominently in the initial searches. These
journals included nine disability-specific journals and four
nondisability journals. The latter journals produced little
relevant material highlighting the extent to which disability
related issues, even in the context of community living, are
largely confined to the specialist journals. Material listed in
the bibliographies of relevant articles was sourced as
appropriate.
A total of 1225 papers were identified in these searches, of
which 30 peer-reviewed articles were deemed to reach the
inclusion criterion. These articles form the basis of the
literature review and are presented in Table 1. In addition, a
further 16 articles were also included to provide context or
relevant examples of interventions that promoted natural
supports.
Results
The use of the term natural supports can be traced to the
mid 1970s when academic literature focusing on community
inclusion began to identify the role of family, friends and
neighbours in supporting people with disabilities, a development that was linked to the then fiscal crises and the need
for funders to find more cost-effective ways to deliver
support (Chanin & Vos 1989; Hunter & Staggenborg 1986;
O’Connor 1973). Emerging approaches to capitalise on
natural supports, such as circles of support, were discussed
in this early literature (Forest & Pearpoint 1992) but abated
in subsequent literature, with the exception of that relating
to the employment of people with disabilities. Few definitions of natural supports thus exist outside of the employment context. Storey & Certo (1996) are an exception,
providing a definition that explicitly links to independent
living where natural supports are defined as people who are
not disability providers but who provide support to people
with disabilities to participate independently in employment or community settings. Bigby (2008) also distinguishes
between formal and informal personnel, noting that natural
supports are based on personal ties rather than payment.
Other definitions tend to diminish this distinction referring
to supporters in general, regardless of whether they are paid
or unpaid (McConkey et al. 2009). This blurring of natural
and formal supports is potentially significant for policy and
service development in the light of the growth of services
such as befriending initiatives, which are organised by
services but where the key role is invariably played by
volunteers (Heslop 2005).
Much of the recent literature relating to natural supports
describes the composition of social networks of people with
intellectual disabilities, and the potential of these networks
to support community inclusion. The evidence base indicates that people with intellectual disability tend to have
small social networks typically comprising paid caregivers,
family members and other people with intellectual disability (Bigby 2008; Clement & Bigby 2009; Emerson & McVilly
2004; Forrester-Jones et al. 2006; Lippold & Burns 2009;
Milner & Kelly 2009; Robertson et al. 2001). Staff members,
when included, comprise a considerable proportion (approx
40%) of the network, a finding that may question the
reciprocity of these relationships (Lippold & Burns 2009).
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Natural supports 201
Table 1 Overview of Peer-Reviewed Studies included in this review
References Location Overview of study Size of sample
Robertson et al. (2001) UK A study of social networks among people with intellectual disability living in the community 500
Whitehouse et al. (2001) UK A study of friendship among men with learning disabilities 4
Fox-Harker et al. (2002) Canada Independent living outcomes for those with acquired cognitive and physical disabilities 440 people with spinal cord injury and 47
with traumatic brain injury
Kam-shing & Sung-on (2002) Hong Kong Study of a befriending intervention for elderly people with disabilities living alone Not stated
Helgoy et al. (2003) Norway Views of people with mobility disabilities and service providers on service provision
for independent living
18 people with disability and 20 service
providers
Duvdevany & Arar (2004) Israel Comparison of friendships between people with intellectual disability living in residential
settings and in foster families
85
Bates & Davis (2004) Not applicable Discussion of approaches to promoting social inclusion and developing social capital Not applicable
Emerson & McVilly (2004) Northern England Research into friendship activities among people with intellectual disabilities in
supported accommodation
1542
Heslop (2005) UK Review of good practice in befriending services 25 people with intellectual disability, 15
befrienders
Abbott & McConkey (2006) Northern Ireland Barriers to social inclusion as perceived by people with intellectual disability 78
Forrester-Jones et al. (2006) UK Follow up study of social networks of people with intellectual disability resettled in community 113
McVilly et al. (2006a) Australia Study of friendship among adults with intellectual disability 51
McVilly et al. (2006b) Australia People with intellectual disability comment on the above study 11
Anderberg (2007) Sweden Analysis of online discussions about personal assistance from a Swedish web forum
for people with disabilities
Not applicable
McConkey et al. (2007) Ireland Community participation of people with intellectual disability in various types of
community settings
620
Bigby (2008) Australia Research into people with intellectual disability living in community settings 24 people with intellectual disability plus
family members of 20
Minkler et al. (2008) USA Research into outcomes of community care policy for people with physical, intellectual,
cognitive and psychiatric disabilities
200
Traustadottir &
Sigurjonsdottir (2008)
Iceland Support networks of mothers with intellectual disabilities 18
Clement & Bigby (2009) Australia Study of supporting community participation of people with intellectual disability 5 people with intellectual disability, 7 staff
members
McClimens & Gordon (2009) UK Study of supported access to the Internet as a mechanism to develop social capital
among people with intellectual disability
Not applicable
Verdonschot et al. (2009) International Review of literature on community participation of people with intellectual disability 23 quantitative studies
Lemay (2009) Canada Review of literature on deinstitutionalisation 54 studies
Lippold & Burns (2009) UK Comparative study of social support amongst people with physical and those with
intellectual disabilities
30 people with intellectual disability 17
people with physical disabilities
Milner & Kelly (2009) New Zealand Views of people in different disability categories (including physical, sensory and
intellectual) on their place in community
28
Randell & Cumella (2009) USA Study of social relationships amongst people with intellectual disability living in
an intentional community
15
Taub et al. (2009) USA Study of networks of rural women with physical disabilities 24
Van Alphen et al. (2009) Netherlands Views and experiences of people with intellectual disability on neighbouring 39
McConkey & Collins (2010a) Northern Ireland Role of support staff in promoting the inclusion of people with intellectual disability 245 support staff
McConkey & Collins (2010b) Northern Ireland The value of personal goal setting in promoting social inclusion of people with
intellectual disability
130
Christensen (2010) Norway Study of careworkers’ views of their roles 526
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202 C. Duggan and C. Linehan
This finding is unaltered despite decades of deinstitutionalisation with an expectation of community inclusion (Bigby
2008; Forrester-Jones et al. 2006; Milner & Kelly 2009).
The role of demographics in the establishment of social
networks is mixed with some studies suggesting women are
more likely to have friends (McConkey et al. 2007) and others
finding no gender difference (Umb-Carlsson & Sonnander
2006). A strong relationship has, however, been observed for
age, with older individuals tending to report diminishing
social networks over their lifetime, many of whom are
identified as ‘knowing no one’ (Bigby 2008). In addition to
individual demographics, the influence of service organisations has been examined in fostering natural supports.
Findings suggest that those who have been supported by
disability organisations, whether residential or educational,
typically have smaller networks than those living in the
family home or those who attended mainstream education
(Bigby 2008; Forrester-Jones et al. 2006; McVilly et al. 2006a).
Staff turnover, in particular, has been identified as a barrier to
those wishing to form relationships within their communities (Bigby 2008; Clement & Bigby 2008).
The social networks of those who have disabilities other
than intellectual are generally deemed poorer than the
general population, with social activities being more likely
to occur in public rather than private places (Milner & Kelly
2009). While the composition of these networks is more
likely to be dominated by friendships when compared with
the social networks of individuals with intellectual disabilities (Lippold & Burns 2009), challenges in forming friendships exist with rurality, transport and fewer social
occasions being identified as barriers (Taub et al. 2009).
The structural features of social networks do not, on their
own, provide information on the quality, amount and
experience of the social support they can and do provide
(Clement & Bigby 2009). Emphasis on the composition of
networks may ignore not just the capacity and reality of the
support provided, but can also ignore the perception of the
recipient of that support. Loneliness, for example, among
individuals with intellectual disabilities is not related to the
size of a social network or to the frequency with which
members are met, but rather to the duration of time spent
with members (McVilly et al. 2006a).
In identifying the type of support provided by social
networks for people with intellectual disability, and identifying who provides that support, staff members typically
dominate (Forrester-Jones et al. 2006; Lippold & Burns,
2009; Robertson et al. 2001) providing practical, emotional
and informational support. Staff members are identified
as the most likely to receive confidences, to support
individuals making decisions and to provide company
(Forrester-Jones et al. 2006). These findings contrast with
those elicited from people with physical disabilities who are
most likely to receive support from family and other people
who do not have disabilities (Lippold & Burns, 2009).
People with intellectual disabilities themselves report that
empathy and companionship are the most important
dimensions of friendship, but comment that both families
and service organisations do not fully grasp the importance
of their friendships and fail to provide the practical support
necessary to maintain these relationships (McVilly et al.
2006b). Social media has been examined as a potential
source of maintaining friendships and has reported positive
outcomes for those with physical disabilities (Anderberg
2007), but not for those with intellectual disabilities
(McClimens & Gordon 2009).
Given that much of the research on social networks
occurs within the context of deinstitutionalisation, it is not
surprising that a considerable amount of the literature
addresses differences in social networks across different
supported living arrangements. A consistent and unambiguous finding is that those living in community settings
have larger and more active social networks than
those living in institutional contexts and that the closer
the living arrangements approximate to independent
living, the larger and more active are those social
networks (McConkey & Collins 2010a; McConkey et al.
2007; Robertson et al. 2001). The unique role of intentional
communities is identified, with findings suggesting that
opportunities for friendships are enhanced by proximity to
other people with intellectual disabilities and the absence
of formalised staffing (Randell & Cumella 2009). The fact
that individuals live together in the same setting does
not, however, guarantee a richer social life, rather the
evidence suggests that people enjoy their social life more in
settings that encourage freedom of choice and flexibility
(Duvdevany & Arar 2004).
An important counterpoint to all of these studies, however, is Bigby’s (2008) longitudinal study which noted that
five years following relocation to the community, initial
increases in social network size were not sustained and, in
fact, only a few individuals had established new friendships
in their local communities. Whether on a temporary or more
permanent basis, the evidence does suggest that supported
living arrangements are associated with social networks, a
finding that should be borne in mind by organisations as
they consider residential support options for people with
disabilities (Lemay 2009).
A further theme on the issue of location is that of the
home as distinct from community spaces, and the implications this distinction has for forming friendships in community settings. Participants with a range of disabilities in
Milner & Kelly’s (2009) research, for example, described
how in order for them to maintain relationships, they were
required to move from the places they know best, such as
their own homes, to public or shared community spaces.
Participants commented, however, that few people made
the equivalent journey to the places that they were most
intimate with (Milner & Kelly 2009).
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Natural supports 203
The role of social networks in enabling community
participation has largely focused on the role of peers and
staff in supporting social activities, albeit that participation
in general is considerably lower, and more solitary in
nature, for people with disabilities than amongst those
without disabilities (Abraham et al. 2002; Douglas et al.
2006). The support of peers with disabilities is explored in a
number of studies where participants have reported feeling
more comfortable among ‘segregated spaces’ where only
others with disabilities are present (Milner & Kelly 2009;
Taub et al. 2009; Van Alphen et al. 2009). Milner & Kelly
(2009) explore this concept by asking whether involvement
with others with disabilities has become a less valid form of
community connection resulting in a devaluing of the
relationships among people with disabilities.
Staff members are not typically considered as natural
supports, but given the evidence base suggesting their
substantial role in providing support to people with
disabilities, most especially intellectual disabilities, studies
examining their role in promoting community participation
and contributing to independent living were included in
this review. The evidence suggests that while people with
intellectual disabilities would prefer staff to take a more
supportive rather than caring role in facilitating community
inclusion (Abbott & McConkey 2006), staff are more likely
to prioritise their caring role (McConkey & Collins 2010b).
There is some evidence that staff members may unintentionally impose their own community preferences upon
people with disabilities (Lemay 2009; Milner & Kelly 2009)
and that service organisations’ risk assessments may hinder
opportunities for community participation (Abbott &
McConkey 2006; Clement & Bigby 2009). These difficulties
may reflect deep seated tensions in the relationship between
staff members and people with disabilities, and whether
service organisations provide a ‘rehabilitator’, ‘servant’ or
‘caregiver’ role (Christensen 2010; Helgoy et al. 2003; Traustadottir & Sigurjonsdottir 2008).
The literature thus indicates that there is substantial
consensus that assistance is needed in the formation and
facilitation of natural supports. Physical presence within the
community does not guarantee greater social inclusion
(Abbott & McConkey 2006). Moreover, facilitating people to
simply participate in community-based activities does not
necessarily lead to meaningful social contact with others.
Consequently, strategies are required to nurture social
networks so as to enable the potential spectrum of informal
network functions to be fulfilled (Bigby 2008).
Four key strategies involving, or enhancing the likelihood
of, natural supports in promoting independent living were
identified in the literature; circles of support, peer-based
approaches, programmes that enhance social competencies
and befriending strategies. Circles of support can be
described as models of formalised support which draw on
family and friends to support a person with a disability
achieve personal goals. Circles may be organised via quasilegal structures with long-term objectives or may comprise
more fluid informal arrangements operating over a short
time span. Microboards, a specific variant of circles of
support, operate with a large degree of flexibility and have
been highly regarded by people with disabilities (Kavanagh
2008).
Peer-based approaches involve those with a shared
disability providing support to each other, sometimes
exclusively of others who do not have disabilities. These
supports may include drop-in centres or peer-counselling
where there is a shared pooling of experience (Martinez &
Duncan 2003). Advocacy groups, in particular, are highly
valued and are deemed to differ from other segregated
groups on the basis that membership is voluntary rather
than by default (Johnson et al. 2010). Advocacy groups, in
particular, may have considerable potential in relation to
independent living, most notably in relation to directing
policy and service development (Clement & Bigby 2008;
Kendrick 2009). These self-regulatory or self-authored
spaces for people with disabilities divide opinion, as for
some they represent a return to a segregation of people with
disabilities, while for others they provide an opportunity for
new discourses and imaginings of disability (Hall 2010;
Johnson et al. 2010).
For some individuals with disabilities, opportunities for
social inclusion may be hampered by a lack of social skills
(Abbott & McConkey 2006). An array of training programmes is thus available to assist individuals gain these
skills (Whitehouse et al. 2001). There is some criticism,
however, that these programmes have overly focused on the
attainment of independent living skills, while failing to
recognise the importance of leisure and social opportunities
(Duvdevany & Arar 2004). Participatory social action
groups have more recently been identified as a useful
vehicle for the delivery of training in advocacy, community
living strategies and social networking (Minkler et al. 2008).
Befriending strategies are a growing intervention aiming
to support individuals increase their friendship circles
(Heslop 2005). Unlike a naturally occurring friendship,
befriending is typically organised by disability organisations to support people with disabilities form friendships
with volunteers. Variants of this model include specifically
appointed ‘community connectors’ and ‘community inclusion officers’ within disability organisations. While there is
little evaluation of many of these initiatives, those which are
undertaken report highly favourable outcomes (Bates &
Davis 2004; Kam-shing & Sung-on 2002; Walker & Cory,
2002).
Discussion
This review has sought to identify the existing evidence
base on the role, and potential, of natural supports in
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204 C. Duggan and C. Linehan
promoting independent living for people with disabilities.
While definitions vary, natural supports are typically
defined in terms of family, friends and neighbours and
can be seen as based on personal ties rather than payment.
More recently, there is some evidence that this distinction
may be blurred in favour of a more fluid understanding of
natural support based on function rather than provider.
Modifications to the literature search conducted in this
review testify to the challenges of identifying the literature on this topic. The limited literature that exists mostly
concentrates on those with intellectual disabilities, exploring their relationships with family members, others who
attend disability services and with staff members within
those services. The generalisability of the findings to the
broader population of people with disabilities, therefore,
cannot be determined and certainly should not be
assumed. The review does, however, provide a focused
assessment of the most recent material pertaining to the
broader set of issues that are relevant to understanding
the potential role of natural supports in promoting
independent living.
The research findings suggest that people with disabilities
can experience social exclusion because they do not have
natural supports that enable them to participate as they
wish in their communities. The findings also suggest that
the barriers to social inclusion are also barriers to the
formation of social relationships or natural supports. Hence,
it seems that many people with disability, and particularly
those with an intellectual disability, experience a ‘Catch 22’,
whereby they find it difficult to live independently and
engage in community activities because they have few
friends who could support them, but they have difficulty
making friendships because they are excluded from their
communities. A myriad of barriers are identified which
militate against their inclusion. These factors include those
at the level of the individual, most notably level of disability
and underdeveloped social skills. Community level barriers
include inaccessible community facilities, physically isolated locations, lack of transport and financial issues. At the
level of service delivery, provider organisations create
further barriers where staff operate within organisational
cultures, which may discourage the development of friendships. Staff practices, for example, may reflect a risk
aversive culture. In combination, these differing layers of
barriers explain, in part, the challenges for people with
disabilities who strive to achieve social inclusion within
their communities.
These findings should provoke debate as to whether,
following decades of deinstitutionalisation, efforts to physically locate people with disabilities within local communities have been attained at the price of social inclusion
(Abbott & McConkey 2006; Bigby 2008; Clement & Bigby
2009; Lippold & Burns 2009; Milner & Kelly 2009). Indeed, it
is almost thirty years since community presence, defined as
the sharing of ordinary social places, was distinguished
from community participation, defined as the experience of
being part of a vibrant social network (O’Brien 1987).
Despite the realisation at policy and service delivery level
that community participation is an essential element for the
inclusion of people with disabilities within society, there is
now considerable evidence that outcomes of service delivery rarely extend beyond community presence.
The favourable attitude of people with disabilities
towards some of the initiatives promoting community
inclusion described in this review suggests that people with
disabilities need support in establishing networks of natural
supports, and that formal services may play a role in
facilitating these networks (Minkler et al. 2008; Kam-shing &
Sung-on 2002; Walker & Cory, 2002). The approaches taken
by formal services in facilitating social networks may be
classified as either social inclusion or social capital
approaches (Bates & Davis 2004). Social inclusion
approaches can be classified as those which rely on staff
members to develop links between people with disabilities
and the wider community. In contrast, social capital
approaches can be classified as those which seek to build
the capacity of people with disabilities themselves to form
relationships and support networks. The initiatives outlined
in this paper suggest that approaches which seek to build
social capital are more likely to be effective in promoting
independent living. This approach may prove challenging
for formal services where staff prioritise their caring role
(McConkey & Collins 2010b) and where considerable
investment is required in ensuring the implementation of
policy to staff practice (Clement & Bigby 2008). The
challenge for disability providers to implement new practices within the confines of dwindling resources should not
be underestimated (Schalock & Verdugo 2012).
This review of the literature presents a number of policy
considerations for jurisdictions like Ireland, which are
reconfiguring disability services towards an individualised
model of support. Firstly, the lack of data relating to natural
supports, and their role in promoting independent living, is
a significant obstacle to the development of policy and
service delivery in this area. Research is required to address
this deficit and should be developed to allow a critical mass
of comparable data to emerge. Initiatives promoting community inclusion should be evaluated to specifically assess
the extent to which they achieve their intention. A second
policy consideration is the need for absolute clarity in the
formulation of policy, requiring clear descriptions of the
mechanism to achieve policy aims. Lest history repeat itself,
and services continue to fail in their delivery of social
inclusion, outcomes must be regularly monitored against
agreed impact indicators. The creation of new community
connector roles within provider organisations is a clear
policy consideration. Where appropriate, providers should
seek to foster relations with mainstream services within
ª 2013 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 41, 199–207
Natural supports 205
local communities. Finally, the involvement of people with
disabilities themselves, and of their natural supporters, in
policy making and the development of service delivery
should be promoted. Consideration is required to support
the natural supporters, whether in the form of direct
support (e.g. respite) or in reinforcing their ability to
promote independent living (e.g. provision of resources
and training).
In concluding, this review has sought to examine the role
of natural supports in promoting independent living for
people with disabilities at a time of radical reform within
the Irish disability sector. Paramount to this discourse is an
acknowledgement by policy makers and service providers
that a move towards natural supports has resource
implications. In the current search for more efficient and
cost-effective disability services, the evidence base suggests
that an investment in the potential of natural supports to
promote independent living for people with disabilities may
prove more successful than past efforts towards community
inclusion which have failed to deliver despite substantial
resourcing.
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