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Involving and Engaging People With Learning Disabilities in the DECODE* Research Project (*Data‐Driven Machine‐Learning Aided Stratification and Management of Multiple Long‐Term Conditions in Adults With Intellectual Disabilities)

✇Wiley: Journal of Policy and Practice in Intellectual Disabilities: Table of Contents
By: Amy Faull， Sarah Rabbitte， Reza Kiani， Gyuchan Thomas Jun， Sonal Kuchadia， Heidi Neville， Amar Jobanputra， Satheesh Gangadharan

ABSTRACT

Some groups of people are underserved in research. This means that they do not take part in research as much as they should. People with learning disabilities do not often take part in research. There are lots of reasons for this, such as researchers not knowing how to (1) make research easy to understand for people with learning disabilities, (2) communicate well with them and (3) hold meetings in places that people can access easily. This paper talks about how the DECODE project included people with learning disabilities in Patient and Public Involvement (PPI) groups which meant that they were able to share their ideas as part of the research team. There were four PPI groups in DECODE: two groups for people with learning disabilities and two groups for family members and carers. Members from local learning disability networks joined the groups. Easy Read information leaflets and posters were used to support people to join the project. We were able to make adjustments so that people could keep coming to the groups. Regular meetings were held and taxis could be booked for people. PPI members had training about research and updates from the researchers about how their work was helping the project. PPI were involved from the start of the project's design. They supported us to make Easy Read information leaflets and told us what was difficult to understand. People with learning disabilities are able to take part in research when reasonable adjustments are made and when researchers take time to get to know people individually.

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Developing Self‐Advocacy Skills in Japanese Special Needs High Schools: A Survey of Teachers Educating Students With Intellectual Disabilities

✇Wiley: Journal of Policy and Practice in Intellectual Disabilities: Table of Contents
By: Shuhei Ogawa， Michio Kojima

ABSTRACT

This study investigated the awareness and frequency of self-advocacy skills development training for students with intellectual disabilities conducted by teachers in Japanese special needs high school sections. The study developed the Difficulty Scale for Self-Advocacy Skills Development (DS-SSD) and the Frequency Scale for Self-Advocacy Skills Development (FS-SSD). Using these tools, the study surveyed teachers in special needs schools for students with intellectual disabilities. Teachers' responses (N = 80) to the DS-SSD underwent exploratory factor analysis, which revealed two primary factors: “difficulty in developing self-understanding” and “difficulty in developing communication skills for rights.” The results indicated that teachers with more years of experience, especially in special needs education, reported less difficulty developing students' self-understanding. Teachers with more years of teaching in schools found developing students' communication skills for rights less challenging. However, the study found no relationship between the frequency of self-advocacy skills development and the teachers' gender, overall teaching experience, or experience in special needs education. These findings offer insights into the challenges and frequency of self-advocacy skills instruction provided in special needs schools. Factors influencing the efficacy of these educational practices are discussed.

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Middle‐Aged Adults' Perspectives on Caregiving for Their Siblings With Intellectual and Developmental Disabilities

✇Wiley: Journal of Policy and Practice in Intellectual Disabilities: Table of Contents
By: Se Kwang Hwang， Kyung Mee Kim， Chung Eun Lee

ABSTRACT

There is limited understanding of middle-aged siblings' experiences of assuming caregiving roles and responsibilities in non-Western cultures. This study explored middle-aged siblings' perceived caregiving obligation for their siblings with intellectual and developmental disabilities within the South Korean societal framework that emphasizes the cultural value of “filial piety.” Data from in-depth semi-structured interviews with 13 middle-aged siblings were thematically analyzed. The findings showed that middle-aged siblings exhibit a strong urge to fulfill their filial duties and willingly embrace the primary caregiver role. However, gender, birth order, and financial responsibilities significantly influence the fulfillment of filial obligations, with older, male, and financially secure siblings who co-reside with their siblings with disabilities being more likely to embrace caregiving roles. Despite advancements in South Korea's disability policies, the concept of caregiving as a familial duty rooted in filial piety remains unchanged. Future measures should consider individualized, culturally sensitive support for middle-aged siblings.

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Self‐Determination and Community Inclusion: Exploring Policy Reform in Day Services for Adults With Intellectual and Developmental Disabilities in the Republic of Ireland

✇Wiley: Journal of Policy and Practice in Intellectual Disabilities: Table of Contents
By: Nicola Maxwell

ABSTRACT

Adult day services are central to service provision for people with intellectual and developmental disabilities (IDD) in Ireland. Policy reform, in the guise of New Directions, has sought to address the segregated and institutionalized nature of these specialist services. New Directions aims to reorient services toward providing supports to enable users to make self-directed choices and decisions and to be included in their communities, reflecting the values of the Convention on the Rights of Persons with Disabilities (CRPD). Yet, segregated day service provision is increasing and people with IDD continue to be structurally excluded from other opportunities and to have their choices circumscribed. This paper focuses on the interview narratives of staff employed in a day service in Ireland. It explores the disjuncture between, on the one hand, New Directions policy descriptions of day services as supports for self-determination and community inclusion and, on the other, the actualities of day service provision. The findings show that New Directions is understood as a means of providing individualized supports to make choices in inclusive mainstream settings but is not perceived as a clearly articulated policy. The research illustrates that the conditions and opportunities to support self-determination and community inclusion are lacking within day services and several challenges inhibit the aspirations of New Directions. The study recommends that the Irish state meets its human rights obligations to ensure that rights to self-determination and community inclusion for people with IDD are upheld. This requires critical excavation of current service provision and targeted policy resources to ensure that the fundamental rights of people with IDD are upheld.

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How We Might Best Develop and Deliver Training and Professional Development in Positive Behaviour Support: A Systematic Review

✇Wiley: Journal of Policy and Practice in Intellectual Disabilities: Table of Contents
By: Julia R. Hall， Danielle Newton， Keith McVilly， Lisa McKay‐Brown， Brent Hayward， Mirko Uljarevic

ABSTRACT

What constitutes good clinical practice in positive behavioural support (PBS) is well established. But how these clinical principles and practices are best translated into education, training and professional development remain unclear. To inform the development of a national blueprint to support education and professional development in PBS, we sought to better understand current approaches to training and education in PBS, its content and delivery. A systematic review of PBS interventions involving staff training was conducted within the timeframe of 1999–2023. Seven databases and one specialist journal (not otherwise indexed) were searched. Articles were identified using key search words; that is, ‘positive behaviour support’, ‘disability’ and ‘training’. Thirty-three articles were identified whose predominant aims were to evaluate the impact and/or efficacy of PBS-based training. Training formats included workshops, lectures, modules, classroom/group instruction and team-based learning through the review of PBS plans. Core content focused on functional behaviour analysis, behaviour support planning, behaviour support strategies and interventions, as well as skills training. Articles reflected similar core content; however, there was a lack of consistency in training delivery, methodology and subsequent outcomes. Despite this, the literature provides evidence to inform the development of a future capabilities framework and guidance on the training, education and professional development of those involved in the delivery of PBS. Subsequently, recommendations are made to inform the education, training and professional development of PBS practitioners and those responsible for the coordination and delivery of support services for people who exhibit challenging behaviour.

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