Involving people with intellectual disabilities in individual service planning: A 'pathways' approach (original) (raw)
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Journal of Policy and Practice in Intellectual Disabilities, 2011
Gaps in policy and service systems exist for people with intellectual disability (ID). The areas of policy and services research that are required to address this situation are vast, complicated, and often interrelated. Strategically developed research agendas underpinned by a strict adherence to human rights principles can optimally inform policy and service development and reform. A framework to facilitate the conceptualization of a comprehensive and structured research agenda for ID that can underpin policy has been developed. It is informed by templates developed in mental health and health and consists of external parameters and internal domains and elements. It is overarched by human rights principles and takes into account other contextual factors including government policies and resources. The framework is applicable in a range of settings and can be used to prioritize and optimize research efforts and resources in the area of ID. The development, dissemination, and implementation of a comprehensive research agenda for ID requires the involvement of a range of key stakeholders, including consumers and carers, clinicians, researchers, and policymakers.
Journal of Policy and Practice in Intellectual Disabilities, 2014
Background: A growing body of literature has shed light into the process of conducting research with people with intellectual disabilities. However, there is limited research on the feasibility of conducting research projects including various groups of people with intellectual disabilities, their supporters and researchers. Specific Aims: This paper reviews three studies conducted with these three groups of people in light of their feasibility, the knowledge generated, and their impact on individual and social change. Method: This study used a reflective analysis focused on the main findings from the three studies, focus groups with people with intellectual disabilities and supporters who conducted the research, and interviews with people to whom the findings were disseminated. Findings: The analysis suggested that a team approach including active supporters and experienced researchers was critical to their feasibility. The studies generated knowledge particularly on the perspectives of people with intellectual disabilities on their rights. As a result of participation in these studies, some changes at the individual and social levels occurred but these were relatively limited. Discussion: The implications of this analysis for future research are discussed in the context of the implementation of the United Nations Convention on the Rights of Persons with Disabilities. * The core advisory committee was formed by people with intellectual disabilities, university researchers, and service providers. ** The research team did it collaboratively including researchers with intellectual disabilities, university researchers, and supporters.
Despite the acknowledgement that individuals with intellectual disabilities are the experts on their own experiences, these individuals have been largely omitted from the disability discourse. Research in the field of disability has typically been done on individuals with disabilities, rather than with them, disempowering this already vulnerable population. Qualitative methodologies, such as Participatory Action Research (PAR), can be employed to involve individuals with intellectual disabilities in the research process. A review of the literature revealed a number of ethical (e.g., obtaining informed consent and assessing capacity) and practical challenges (e.g., recruitment, data collection, analytic strategy, researcher interpretation) that interfere with researchers engaging in PAR. These challenges must be overcome in order to empower persons with intellectual disabilities to participate in research.
Journal of Applied Research in Intellectual Disabilities, 2001
The present paper presents a descriptive summary of the views and experiences of people with intellectual disabilities (IDs) as they have been represented in research and other literature. The authors develop further the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, a review report commissioned by the Department of Health on the views and experiences of users and family carers focusing on the ways in which research might contribute to policy and practice. The literature review of user views and experiences produced three broad categories: (1) ‘testaments of life’, which are mainly ethnographies and life histories; (2) ‘user movement media’ produced in an accessible format for people with IDs or by people with IDs themselves; and (3) ‘research based studies’ in their varying forms. It is demonstrated that no single approach is able to encompass all the interests of knowledge production, policy planning, and action or practice on its own. Some of the methodological issues associated with these gaps are more fully discussed. A more coordinated and broad-based research approach to user views and experiences is advocated.
Since the 1970s, the disability movement, led by people with disabilities, has played a key role in changing disability policy and service systems. People with intellectual disabilities have contributed to these changes but have not maintained a high profile. Too often they are not well supported to participate or are represented by families and other allies. The same is true of research and developments in disability practice and safeguarding, where perspectives of people with intellectual disabilities are underrepresented. The new rights based policy approaches discussed in this book emphasise hearing directly from people with lived experience of disability about their experiences as service users to inform what policies need to change and how services should be designed. More funding is becoming available
Engaging service users in identifying priorities for research on intellectual disabilities
Although there is a wealth of research on intellectual disabilities (ID) in the UK, people with ID are only very rarely involved in defining research priorities or conceiving and designing specific studies. Researchers at University College London (UCL) engaged service users with ID across London as participants and consultants to develop a research proposal based on a service user generation project. Reflection meetings and a final consensus-building meeting were held to achieve this.
An analysis of the systemic aspects of rights training for people with intellectual disabilities
2009
Individuals with intellectual disabilities (ID) as a group have been subject to abuse. Individuals with ID need to be made aware of their rights. The 3Rs: Rights, Respect and Responsibility Human Rights Project is promoting rights awareness in individuals with ID, their caregivers and family members. To be effeCtive, abuse prevention must include support from the whole organization and its processes. This research evaluated the impact of the 3Rs initiative on the organization. It focused particularly on descriptions of organizational change perceived by full-time staff and managers in response to the initiation of the 3Rs Project. Behavioural interviews were conducted and a thematic analysis was used to describe changes in the organizational culture and behavioural mechanisms maintaining these changes. Systemic barriers to change were also explored. The results indicate that the Association is effectively implementing and supporting the rights-based philosophy. Systemic Analysis of ...
Persons with intellectual disabilities have historically been denied their rights or experienced severe rights restrictions. In recent decades there has been a shift towards the respect for the rights of persons with disabilities. However, there are still rights restrictions that may be in place in today's systems. Agencies supporting persons with intellectual disabilities are beginning to establish commissions on human rights to review restrictions when they occur and to ensure that such restrictions are either justified or removed. These restrictions may be in place to protect the individual, or they may represent restrictions or violations that have no justification. There has, however, been no systematic research into the nature of rights restrictions that exist in systems that support persons with intellectual disabilities. In this research, an agency that was initiating a rights review process asked the critical baseline question: What rights restrictions exist in the agency? Using staff questionnaires and interviews with individuals with disabilities, the more commonly rated rights restrictions were identified within the agency. The data, however, indicate that staff (primary and part-time) and the individuals identified different rights restrictions and had significantly different ratings of these restrictions.
2015
This paper presents the findings from a systematic review which investigated the use of phenomenological research interviews in studies involving people with intellectual disability. A search of four electronic databases and the subsequent application of inclusion criteria resulted in 28 relevant publications. Selected articles were reviewed and key data extracted using CASP guidelines, with findings presented by examining the influencing philosophy or theory, the method of recruitment and data collection, the relationship between researcher and participants, the rigour of data analysis and finally a statement of findings. The results show people with mild and moderate intellectual disability, included as participants in phenomenological research investigating a range of issues that are important in their lives. A critical discussion focuses on the main characteristics of phenomenology and points to implications for further research. Creating awareness of research among people with intellectual disability is important, and finding the best way to ensure findings are disseminated in accessible formats is recommended. Researchers are also challenged to consider Heideggerian hermeneutic phenomenology as a method with the potential to fully explore the experiences of people with intellectual disability.
Individual self-determination and civic engagement are key resources in the life of every individual. All the more so in the case of individuals with an intellectual disability (ID), who are frequently prevented, voluntarily or passively (for example through the failure to promote favourable conditions for learning), from implementing the resources that are required for acquiring and developing these skills. The importance of being able to apply these skills in everyday life is however acknowledged and encouraged by the UN Convention on the Rights of Persons with Disabilities (2006). This article presents and analyses the conditions for vertical and horizontal collaboration (Greenhalgh et al., 2004), which have contributed to the successful introduction of an educational approach to self-determination and active citizenship in a social care establishment for individuals having a mild to moderate ID. The research was conducted over two years (2014-2016) within the framework of a partnership between the establishment concerned and academic researchers. The principal stakeholders involved in the research, including 16 individuals with an ID, 13 educational care professionals, 4members of the managerial staff and 4 research workers, worked together to promote the adoption of principles of self-determination and civic engagement within the establishment , and designed a training programme aimed at individuals with an ID and professional support staff. The effectiveness of the intervention mechanism applied by this team has been verified and validated using a pre-and post-test evaluation, the results of which have appeared in a separate publication. A qualitative analysis of the collaboration conditions indicates, and on first sight this may appear paradoxical, that individual self-determination and