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"Lost in the literature." People with intellectual disabilities who identify as trans: a narrative review
- Authors:
- KEATES Nathan, DEWAR Eleanor, WALDOCK Krysia Emily
- Journal article citation:
- Tizard Learning Disability Review, 27(1), 2022, pp.46-52.
- Publisher:
- Emerald
Purpose: This narrative review aims to examine how trans people with intellectual disabilities are perceived and discussed in the academic literature. Design/methodology/approach: A narrative review was carried out to better understand the positioning of people with intellectual disabilities who identify as trans. Findings: There was a lack of clear terminology, an over medicalization of both people with intellectual disabilities and trans people and evidence that identifying with a non-conforming gender identity was seen as a problem by services. Services need to be better informed about issues around gender identity so that they are able to better support trans people with intellectual disabilities. Originality/value: To the best of the authors' knowledge, no previous literature review has focused only on trans people with intellectual disabilities. (Edited publisher abstract)
Commentary on: "Lost in the literature". People with intellectual disabilities who identify as trans: a narrative review
- Author:
- ZIRNSAK Tessa-May
- Journal article citation:
- Tizard Learning Disability Review, 27(1), 2022, pp.53-56.
- Publisher:
- Emerald
Purpose: This paper aims to discuss the barriers that people with intellectual disabilities face to come out as transgender in the context of a paucity of research with or about this group. Design/methodology/approach: The commentary and brief overview of trans participation in literature on people with intellectual disabilities presented in this paper is informed by a Queer Theory and Critical disabilities Studies approach. Findings: Researchers in this area are correct that there is insufficient literature that addressed the experiences of trans people with intellectual disabilities; however, for trans people with intellectual disabilities to be involved in research they must first be safe to self-identify and come out in their communities and services. Existing research suggests that people with intellectual disabilities may face additional barriers to self-identifying as LGTBQ, and that for those who have claimed a trans identity, it is not safe to come out. Social implications: There is a need for researchers and professional and lived experience experts to be engaged in policy and social research with the aim of creating safe spaces and communities for people with intellectual disabilities to explore and affirm their gender. Originality/value: There are no published papers that redirect focus from a paucity of research into the experiences of trans people with intellectual disabilities towards addressing why trans people with intellectual disabilities may choose not to come out in a context of hostility towards transgender identity in disabilities services. (Edited publisher abstract)
Access to and use of health and social care services for people with learning disabilities during COVID-19: a longitudinal study
- Authors:
- FLYNN Samantha, et al
- Journal article citation:
- Tizard Learning Disability Review, 27(1), 2022, pp.57-66.
- Publisher:
- Emerald
Purpose: This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern Ireland, Scotland and Wales. Design/methodology/approach: Data were collected in three waves between December 2020 and September 2021 and concerned the use of health and social care services during the COVID-19 pandemic. Data were collected at one or more time-points directly from 694 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 447 adults with learning disabilities. Findings: Many people with learning disabilities who reported regularly accessing services/supports pre-pandemic were not receiving them during the timeframe of this study. There were indications of increasing access to some services and supports between Wave 2 and 3, but this was not universal. Practical implications: People in Cohort 2, who were likely to have severe/profound learning disabilities, were less frequently reported to access online community activities than people in Cohort 1, which is likely to exacerbate existing social isolation for this cohort and their family carers. Service providers should seek to ensure equitable access to services and activities for all people with learning disabilities in the event of future lockdowns or pandemics. Originality/value: This is the largest longitudinal study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities and family members throughout the study. (Edited publisher abstract)
Intellectual disability in Switzerland: the UN Convention on the Rights of Persons with Disabilities, as a vehicle for progress
- Authors:
- BUSCHI Eva, ANTENER Gabriela, PARPAN-BLASER Anne
- Journal article citation:
- Tizard Learning Disability Review, 27(1), 2022, pp.31-39.
- Publisher:
- Emerald
Purpose: This paper aims to provide an overview of the history, current status and future challenges for intellectual disability (ID) policy and practice in Switzerland. Design/methodology/approach: Following a review of the literature, academics in the field of ID in Switzerland reflect on critical issues. Findings: The implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has resulted in the move from institutions to more flexible and individualised, community-based support services. Originality/value: This paper describes a Western-European country facing the challenges of deinstitutionalisation to become an inclusive society due to directions given by the CRPD. (Edited publisher abstract)
Commentary on: Intellectual disability in Switzerland: the Convention on the Rights of Persons with Disabilities as a vehicle for progress
- Author:
- PETRI Gabor
- Journal article citation:
- Tizard Learning Disability Review, 27(1), 2022, pp.40-45.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to provide a commentary on "Intellectual disability in Switzerland: the UN Convention on the Rights of Persons with Disabilities, as a vehicle for progress". Design/methodology/approach: This commentary highlights the importance of including people with intellectual disabilities in human rights reporting. The commentary builds on available data from academic research as well as civil society reports. Findings: Three main aspects are presented: the lack of involvement of people with intellectual disabilities in human rights reporting, the barriers to their participation in developing and publishing human rights reports and possible strategies to tackle those barriers. Originality/value: The United Nations Convention on the Rights of Persons with disabilities (CRPD) makes it mandatory to include people with intellectual disabilities in policy-making as well as in monitoring the CRPD. Academics need to change their practice to include people with intellectual disabilities in human rights research. (Edited publisher abstract)
From care packages to Zoom cookery classes: youth work during the COVID-19 "lockdown"
- Authors:
- SHAW Aileen, BRADY Bernadine, DOLAN Patrick
- Journal article citation:
- Journal of Children's Services, 17(1), 2022, pp.59-72.
- Publisher:
- Emerald
Purpose: This paper aims to explore the experience of one large Irish youth work organisation, Foroige, to measures introduced during the initial phase of COVID-19 in 2020. In the face of the unprecedented crisis including the closure of schools and curtailment of many youth services, this paper examines how the organisation responded and adapted its service offering. Design/methodology/approach: Qualitative semi-structured interviews were conducted with 12 senior managers and youth officers in Foroige to explore their perspectives on the organisation's response. Participants were purposively sampled from across the operational management functions and also from regional levels and youth workers engaging in work "on the ground". Findings: Shifting from a face-to -face, relationship-based to a distanced mode of engagement with young people, colleagues and volunteers required significant adaptation of Foroige's service model. Innovation took place both in the delivery platform and fundamentally, in its service orientation. The accelerated move to online youth work brought about by the pandemic enabled the organisation to embrace and learn from the challenges and opportunities posed by digital technology. Responding to the immediate and tangible needs of young people in receipt of services, staff found themselves working with families at the more basic levels of intervention. Originality/value: This paper provides new insights into the nature of non-profit service innovation during a time of unprecedented crisis management. It highlights characteristics of organisational agility that can assist organisations in managing crises, while also pointing the way towards a more flexible operating model for youth work service delivery. (Edited publisher abstract)
Children's participation in practice: comparing the views of managers and practitioners in an early intervention and prevention programme
- Authors:
- TIERNEY Edel, et al
- Journal article citation:
- Journal of Children's Services, 17(1), 2022, pp.73-93.
- Publisher:
- Emerald
Purpose: Participation is the active involvement of children and young people in decision-making regarding issues that affect their lives. It is crucial in the context of child protection and welfare systems and how they respond to the needs of children and young people. The purpose of this paper is to report on the evaluation of child and family participation in an early intervention and prevention programme implemented by the Irish Child and Family Agency. It provides an analysis of a comprehensive, "whole organization" approach to understand how participation is embedded in policy and practice. Design/methodology/approach: This paper reports on a comparative qualitative case study of the perspectives of managers and practitioners about participation practice, identifying the facilitators and barriers, as well as their perspectives of the sustainability of participation within the agency and its partners. The authors draw on two complementary, theoretically informed studies evaluating participatory practice within the Agency using qualitative interviews with participants. Findings: Overall, managers and practitioners had a positive attitude towards participation and identified examples of best practices. Facilitators included training, access to resources and the quality of relationships. Challenges for meaningful participation remain, such as the need to engage, hard to reach populations. Differences were identified regarding how embedded and sustainable participation was. Originality/value: This paper provides a critical understanding of participation in practice and how to embed a culture of participation in child protection and welfare. (Edited publisher abstract)
Adapted guided self-help booklets for supporting the well-being of people with intellectual disabilities during the COVID-19 pandemic: an evaluation of impact
- Authors:
- MAGUIRE Roseann, et al
- Journal article citation:
- Tizard Learning Disability Review, 27(1), 2022, pp.17-25.
- Publisher:
- Emerald
Purpose: The COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis. Design/methodology/approach: The use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources. Findings: The resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges. Originality/value: The findings highlight the potential long-term value of guided self-help resources to help promote well-being that can be delivered on an outreach basis by family members and social care organisations. (Edited publisher abstract)
Commentary on "Adapted guided self-help booklets for supporting the wellbeing of people with intellectual disabilities during the COVID-19 pandemic"
- Author:
- RICHARDSON Lisa
- Journal article citation:
- Tizard Learning Disability Review, 27(1), 2022, pp.26-30.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to provide a commentary on "Adapted guided self-help booklets for supporting the wellbeing of people with intellectual disabilities during the COVID-19 pandemic" (Jahoda et al.). Design/methodology/approach: This paper considers health and wellbeing for people with intellectual disabilities in the context of public health interventions and public health research. Findings: Consideration is given to the evidence base for self-management, self-help and behavioural change interventions and the need to consider systemic support for promoting the health and wellbeing of people with intellectual disabilities. Originality/value: Guided self-help and self-management techniques have a role in the health promotion of people with intellectual disabilities. Reciprocal sharing between public health researchers and intellectual disability researchers is needed to further the research, policy and service agenda to better promote health and wellbeing for this underserved group. (Edited publisher abstract)
Support of young children from disadvantaged families in Switzerland: mixed-method evaluation of the home visitation program Schritt:weise
- Authors:
- LANNEN Patricia, DUSS Isabelle
- Journal article citation:
- Journal of Children's Services, 17(1), 2022, pp.1-15.
- Publisher:
- Emerald
Purpose: Children from disadvantaged families often already show developmental deficits at the time of school entry. The goal of Schritt:weise, a preventive, easy-access early education program for children ages one to five is to avoid such deficits through a combination of home visits by semi-professionals as well as center-based group activities. The program has been translated and adapted from the Dutch program Opstapje and is now being implemented in different regions in Switzerland. To offer the program more readily in rural areas, four adapted models were developed. This paper aims to provide a mixed-method, combined process and outcome evaluation of these newly developed models. Design/methodology/approach: For this combined process and outcome evaluation, standardized testing for child development outcomes and interviews with different stakeholders were conducted. Findings: The evaluation found that implementation of all four models was feasible and children developed along the norm in all four of the models. This finding was confirmed one year after program completion. Research limitations/implications: Building an evidence-base to better understand success of early intervention programs is key to effectively supporting children from disadvantaged families in their development. Practical implications: This early education program using home-visitation with semi-professionals is feasible and successful in reaching children from disadvantaged families. Social implications: It is possible to support children from disadvantaged families through the program Schritt:weise and prevent developmental deficits at school entry. Originality/value: The finding that children developed along the norm in all four models means that the key program goal was achieved and that the specific implementation model can be chosen based on the specifics of the implementation context. (Edited publisher abstract)