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Collings, S., Dew, A., & Dowse, L. (2017). They need to be able to have walked in our shoes: What people with intellectual disability say about National Disability Insurance Scheme planning. Journal of Intellectual and Developmental Disability. Published online 5th February. DOI: 10.3109/13668250.2017.1287887.
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Empirical research within critical psychology is strongly associated with the use of qualitative methods. In the field of qualitative psychology a distinction can be made between experiential and critical approaches (Braun & Clarke, 2012a, Reicher, 2000), both of which involve some kind of critique of mainstream psychology. Experiential approaches aim to capture participants’ experiences and perspectives and ground research in participants’ accounts, rather than researcher’s categories, but view language as a reflection of “internal categories of understanding” (Reicher, 2000: 3), and so assume it is possible to ‘read off’ participants’ thoughts, feelings and practices from their use of language. By contrast, critical approaches challenge what experiential approaches have in common with mainstream psychology – the assumption that language is only of interest as a description of inner states. Critical approaches (usually some version of discourse analysis) understand and analyse language as something that is constitutive, rather than reflective, of our social and psychological words, as a form of social action. One of the most common qualitative methods is (some form of) thematic analysis (TA); however, there is debate about whether TA is an experiential or a critical approach, and thus an appropriate analytic method for critical psychology.
This paper questions whether Australia’s new disability support regime, the National
Disability Insurance Scheme (NDIS), can meet its aims for people with disabilities
who also experience complex social disadvantage, using the examples of people with
intellectual disabilities from cultural and linguistically diverse backgrounds and those
who cycle in and out of the criminal justice system. The paper undertakes a critical
analysis of the proposed eligibility requirements under the NDIS and assesses the risks
of marginalisation in the proposed approach for people with intellectual disabilities
who also experience other complex individual and social disadvantage, and begins to
ask, “Will the NDIS meet its aims if it does not address these complexities?” The
analysis suggests that under the draft rules for eligibility the onus is on individuals to
prove their eligibility for supports funded by the NDIS on a case-by-case basis and,
moreover, to prove that receiving such support will reduce their future dependence on
the system. This raises a number of issues for those whose experience of disability is
tied to complex and intractable social disadvantage, and raises questions about the
NDIS’s ability to meet its aims in relation to rights, choice, and control. The paper
demonstrates the ways in which people with disabilities who are already at risk of
disengagement from support systems and social exclusion risk further marginalisation
in the context of an NDIS, as it currently appears to have little capacity to recognise
and respond to their complex need for disability social support.
Abstract Meaningful relationships with others are often elusive for people with intellectual and developmental disabilities, but no less desired for their full inclusion and participation in society. It is well documented that people with disabilities are victims of interpersonal violence at higher rates than peers without disabilities. This article presents a formative evaluation of the Friendships and Dating Program (FDP). The FDP was designed to teach the social skills needed to develop healthy, meaningful relationships and to prevent violence in dating and partnered relationships. Thirty-one adults were recruited by 5 community agencies in Alaska to participate. The results showed the size of the participants' social networks increased and the number of incidents of interpersonal violence was reduced for participants who completed the FDP, and outcomes were maintained 10 weeks later.
The paper reports on the development and piloting of the Social Inclusion Interview Schedule (SIIS). This uses pictures to explore social networks and feelings of social inclusion. The background, conceptual framework and development of the interview schedule are discussed and interim findings are highlighted. The challenge of not just identifying the constituents of a social network but also attributing some measure of intensity to the relationships and activities identified will be considered. The study site is Bradford in the UK and the study population are young people with learning disabilities and their carers. There is a specific focus on people from the South Asian community resident in the city.
Background This study explored ‘loneliness’ as experienced by adults with intellectual disability, with ‘intermittent’ to ‘limited’ support needs.
Method A measure of loneliness was piloted, and qualitative techniques used to develop a greater understanding of the participants’ experience.
Results The Loneliness Scale proved valid and reliable and the participants reported loneliness in ways comparable with the general population.
Conclusions The findings demonstrate the effectiveness of combining quantitative and qualitative techniques to enhance understanding of people's perspective when developing support systems to promote their quality of life. Based on participant perspectives, recommendations are made concerning the issues and types of support families and professionals could consider when seeking to assist people with intellectual disability address loneliness. Further investigation of the effects of differing educational and vocational opportunities on people's post-school social networks appears warranted.
Background Research in the US and UK has demonstrated the effectiveness of person-centred planning (PCP) for people with intellectual disabilities. However, it is important to acknowledge problems that arise when implementing PCP. This paper considers barriers to PCP reported during a longitudinal study of the impact of PCP.
Methods Person-centred planning was introduced over a 2-year period for 93 people of whom 65 had a plan developed. Information was collected regarding barriers to PCP every 3 months from key informants using self-completion questionnaires.
Results Barriers to PCP were widespread particularly in relation to: availability of trained facilitators; availability of services; lack of time and reluctance of people other than paid support staff to engage in the PCP process.
Conclusions Services need to be aware of potential barriers to PCP so that strategies can be developed to overcome them, the first of which should be the ongoing training and support of facilitators.
Recent research in the USA and UK indicates that person-centred planning (PCP) can lead to improvements in lifestyle-related outcomes for people with intellectual disabilities (ID). It is clear, however, that the introduction of PCP does not have an equal impact for all participants. The aim of the present paper was to identify factors associated with the probability of delivering a plan and with improvements in outcomes for those who did receive a plan.
Information on the life experiences of participants was collected over a period of approximately 2 years for a cohort of 93 adults with ID.
There were powerful inequalities in both access to and the efficacy of PCP in relation to participant characteristics, contextual factors and elements of the PCP process.
Results are discussed in relation to implications for policy and practice for increasing the effectiveness of PCP and reducing inequalities in the life experiences of people with ID.
Background Young people with intellectual and developmental disability (IDD) get information, education, and support about social and sexual relationships from different sources. Staff are often involved in providing this education and support. We explored if and how this support is offered to young people transitioning to adulthood. Methods Focus groups were conducted with 17 staff from 3 transition services to illicit information about their experiences providing this education and support. Findings A key theme was that staff are “reluctant counsellors.” Although staff provided social and sexual education, they reported being underprepared and relied primarily on their own values as guidance. They did this in full recognition that transition services filled a social gap for participants, blurring the lines between education and social support. Conclusion Further research is needed to inform sexuality and relationship policy and practice during transition to adulthood, as this is a key learning and developmental time for young adults with IDD.
Australia's new National Disability Insurance Scheme (NDIS) uses individualised funding packages instead of traditional block-funded disability services to support people with disability. The NDIS works with the person and their family to assess the person's needs and develop a plan that determines their funding allocation. Funding can be used to purchase support from a disability service or from the open market. People can purchase support that suits their cultural and personal preferences. This paper examined whether individual funding packages met their aims in Western Australia, where they had been the primary mechanism of disability support for over 25 years. An exploratory case study was conducted consisting of face-to-face, in-depth interviews with 11 key participants: people with disability, senior government administrators, service provider managers, and a support worker. Complex systems theory was used to review the data and findings showed that individualised funding packages did not automatically result in more choice and greater opportunities. People needed information to make informed decisions; supportive and creative support from social workers and other professionals; and welcoming communities. The findings can inform policies and assist social workers facilitate maximum choice and opportunities for people with disability and their families.
There is growing emphasis on inclusion as a central philosophy in services for people with learning difficulties in the UK, Europe and the USA. Coupled with this is recognition of the need to actively involve people with learning difficulties in the research process through the use of more inclusive approaches. This paper reports the use of focus groups as a strategy for data collection from people with learning difficulties in a project that sought to review existing accommodation and support. A number of important key themes emerged relating to the importance of social networks, inclusion, reciprocal relationships, privacy and security. The implications arising from these findings for the provision of accommodation and support are considered. Furthermore, it was concluded that focus groups are potentially a valuable approach in research that seeks to actively involve people with learning difficulties.
The National Disability Insurance Scheme (NDIS) has been called ‘the most fundamental social policy reform since the introduction of Medicare’. In this article, we document the chronology of the insurance and actuarial developments leading up to the NDIS. We describe the critical components of the ‘insurance model’ in this context and how these apply in a human services framework like disability and potentially other areas. We then briefly document the Productivity Commission's vision for the NDIS, including the potential economic benefits. Finally, we present some commentary on the current status of the NDIS's implementation and risks which may threaten its success.
Young people with learning disabilities frequently experience mental health support needs, especially at the transition stages as they move into adulthood. The Count Us In inquiry (Carpenter, 2002) suggested that the prevalence rate for mental health needs in young people with learning disabilities may be as high as 40%, four times as high as for young people in general. This paper reports on an action research study in Somerset which was funded by the Foundation for People with Learning Disabilities. The study followed young people and practitioners in adopting a largely social model of mental health distress. It focused on positive emotional support, and worked with young people themselves to find new ways of tackling these issues. Young people in the study said that the support they most valued was that gained through friendships. A small, self-selecting group of students worked with the project, and they designed and piloted a short course about emotional support for other young people. The findings show that this was effective in helping the young people talk more freely about their feelings, and build their confidence and mutual trust. This article argues that, by developing their own self-determination, young people with learning disabilities can build their resilience to emotional problems and take more control over their own lives.
Person-centred planning is one important tool in making the culture change necessary to realize the Government's promise in Valuing People. Some potential dangers in large scale implementation are identified, a logic for local action is described, the criteria for effective person-centred planning are defined in terms of supporting personal choice, the contribution of person-centred planning to organizational culture change is identified, the possibility of failure to implement policy change is acknowledged, and the potential benefits of person-centred planning under conditions of policy failure is described.
Mansell & Beadle-Brown (2004) raise a number of concerns about the possible impact of the systematic introduction of person-centred planning (PCP) across services for people with intellectual disabilities in the UK. We too foresee a danger that system-wide adoption of PCP will be characterised over zealous ‘selling’ of the purported benefits without sufficient attention to the difficulties and without the necessary changes to system architecture to ensure that those involved in PCP have the authority or resources to achieve the plan's goals. If so, PCP will become another fad, and service users, and their families will become even more discouraged, disheartened and alienated by a system characterised by rhetoric rather than meaningful action. Where we differ, is in the interpretation of the existing evidence regarding the impact of individual planning systems in general and, perhaps, in the way forward.
Background This critical review considers the nature and importance of person-centred planning in the context of current British policy and service development in intellectual disability. The difference between person-centred planning and other kinds of individual planning is discussed.
Materials and method The scale of the task of implementing person-centred planning as a national policy initiative is considered. The limited evidence base for person-centred planning is reviewed and the reasons for the failure of previous attempts at individual planning are analysed. The assumption that person-centred services will be produced by a new kind of individual planning is questioned.
Conclusions Consideration is given to what would be necessary to make services more person-centred, including changes in power relations, funding arrangements and staff training and supervision.
This paper examines the problems and potentials of employing user focus groups as part of an approach to defining and reviewing Best Value in local authority and jointly commissioned services for people with learning disabilities. Drawing on experience from three local authority initiatives and wider experience with Best Value, the paper describes the development of user focus groups for helping review adult placement, outreach and day services for people with learning disabilities. The key methodological considerations for consulting with service users with learning disabilities through focus groups are identified and the interpretation of outcomes considered. The paper concludes with pointers for the effective operation of user focus groups in local authority Best Value reviews of services for people with learning disabilities, of use to practitioners, service managers and commissioners.
Studies of the general population indicate that social networks influence a person's employment situation and career, especially in regard to how a person finds and gets a good job. Recent studies suggest that networks may function in similar ways for people with certain disabilities. In order to learn about the role that social networks played in career development, in this study I explored the social networks of 5 young working people with intellectual disabilities. ©American Association on Intellectual and Developmental Disabilities.
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