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Sweden's LSS and social integration: an exploration of the relationship between personal assistant type, activities, and participation for children with PIMD
- Authors:
- BOREN Taylor, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(1), 2016, pp.50-60.
- Publisher:
- Wiley
The Swedish personal assistance system allows children with profound intellectual and multiple disabilities (PIMD) to receive subsidised personal assistance. This assistance may be either a hired professional from outside the family or a parent paid as a personal assistant. The authors explored whether children's personal assistant type (i.e., external or parental) is related to their presence in socially integrative activities (SIAs) versus non-socially integrative activities (NSIAs). The relationship between children's activity engagement and their personal assistant type was examined via a descriptive, comparative study based on a questionnaire. Sixty families answered, providing quantitative data about personal assistance type across 56 common family activities. Children's external assistants showed a greater presence in SIAs than children's parental assistants, who showed a greater presence in NSIAs. The level of activity engagement between personal assistant type, however, had a less direct relationship. In accordance with bio-ecological systems theory, activity selection can influence the child's cognitive and social development. Ultimately, this study suggests that external assistants partake in more SIAs than parental assistants, likely as a function of providing respite for families. This respite stems from the LSS's implicit role for external personal assistants to also serve as relief for parents. In turn, by facilitating exposure to broader systems, these external assistants can play a critical role in children's social and cognitive development. (Edited publisher abstract)
The Sounds of Intent project: modelling musical development in children with learning difficulties
- Author:
- OCKELFORD Adam
- Journal article citation:
- Tizard Learning Disability Review, 20(4), 2015, pp.179-194.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to set out the current status of the Sounds of Intent project, and explains some of the theoretical thinking that has underpinned its development over a period of 12 years. Sounds of Intent maps the musical development of children and young people with learning difficulties. It currently exists as an online resource that offers practitioners a framework for assessment (with an online recording tool), information and downloadable resources. Design/methodology/approach: The approach to the development of Sounds of Intent has been through two main phases: first, exploratory, qualitative analysis was used to inform the development of a model setting out how musical abilities and engagement are thought to develop in children and young people with learning difficulties; and second, the framework’s efficacy has been evaluated through gathering data from a number of practitioners in the field that has been analysed principally through quantitative means. Findings: The principal findings of the Sounds of Intent project to date are that virtually all children (with the exception of those who are incapable of processing sound or vibration at all) are able to engage with music, whether reactively, proactively or interactively. The great majority have potential for musical development that can be realised over time, given an appropriately rich and engaging environment. Originality/value: Sounds of Intent is the first research project in the world to focus on the musical development of children and young people with learning difficulties, and makes the first attempt to set out how this may occur. Since its public launch in 2012, the Sounds of Intent web site has had over 4,000,000 unique hits, with over 500,000 downloads of resources, from people all over the world. (Publisher abstract)
Commentary on “An audit of an Intensive Interaction service”
- Author:
- BAKER Peter
- Journal article citation:
- Tizard Learning Disability Review, 20(3), 2015, pp.117-120.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to provide a commentary on “An audit of an Intensive Interaction service”. Design/methodology/approach: Drawing on the literature regarding other related person-centred approaches and clinical and research experience, an argument is made that people with profound intellectual and multiple disabilities are particularly at risk when service innovation does not account for their unique needs. Findings: Practice and service models need to specifically account for the needs of people with profound intellectual and multiple disabilities. Originality/value: The commentary draws attention to the importance of implementation and seeks to draw lessons from well established, service wide approaches for people with intellectual disabilities. (Publisher abstract)
Staff experiences of supported employment with the sustainable hub of innovative employment for people with complex needs
- Authors:
- GORE Nick J., FORRESTER-JONES Racheal, YOUNG Rhea
- Journal article citation:
- British Journal of Learning Disabilities, 42(3), 2014, pp.228-235.
- Publisher:
- Wiley
Whilst the value of supported employment for people with learning disabilities is well substantiated, the experiences of supporting individuals into work are less well documented. The Sustainable Hub of Innovative Employment for people with Complex needs operates in the South East of England and aims to support people with learning disabilities and complex needs to find paid employment. Sixteen semi-structured interviews administered to staff members of Sustainable Hub of Innovative Employment for people with Complex needs revealed seven core themes concerning their experiences of helping people with complex needs into work. This included the practical and emotional reality of facilitating supported employment and a reflection on those factors that influenced success. Staff reported that it could be difficult to help people with complex needs to find work and this often made them worried. However, when people with complex needs found work, it was very rewarding. This article discusses how findings relate more broadly to work in this area, and the vital roles frontline staff play in making employment happen for people with learning disabilities. (Edited publisher abstract)
Evaluation of the impact of supervisory support on staff experiences of training
- Authors:
- KOSKI Katja, et al
- Journal article citation:
- Tizard Learning Disability Review, 19(2), 2014, pp.77-84.
- Publisher:
- Emerald
Purpose: This paper aims to evaluate the role of the supervisor's support on the effectiveness of a communication training program targeted at staff members who work with individuals who have profound and multiple learning disabilities. Design/methodology/approach: The aim was to explore which aspects of supervisory support influenced the staff members to participate in the programme and the results for the on-going effects of the training. Findings: Staff members reported a need for more supervisory support to maintain the results of the training and to disseminate the new practices to non-trained staff. Originality/value: Although supervisory support seems to benefit staff members during their participation in training programmes, even careful planning and execution of this support cannot ensure its continuation after the training is finished. (Publisher abstract)
Day services for people with profound intellectual and multiple disabilities: an analysis of thematically organized activities
- Authors:
- PUTTEN Anette van der, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(1), March 2011, pp.10-17.
- Publisher:
- Wiley
A recent idea to emerge in the Netherlands for improving the quality of activities provided for people with profound intellectual and multiple disabilities is to organise these activities of thematically, with activities offered in thematic rooms at a centre where clients spend the whole day. This in-depth study aimed to analyse the nature and duration of activities organised according to theme offered at a particular day service centre. The study focused on 23 adult attendees with profound intellectual and multiple disabilities. Information was collected on the number, type and length of activities offered and the duration of individual attention each attendee was given during activities. The study found that 63% of the activities were care-related activities (such as starting and finishing the day, waiting and resting), and that the other type of activities offered showed less variation than expected, with watching television or listening to music representing a substantial part of the programme and artistic and creative activities or playing and games offered less frequently. More time was spent giving attention to individuals than to the group when compared with non-thematic centres, but the percentage of individual attention provided was highest during care-related activities. The expected effects of using a thematically centred model, such as less waiting, more variety, and more individual attention, were only partially found, and the authors suggest that further research is required.
Snoezelen : an approach to the provision of a leisure resource for people with profound and multiple handicaps
- Authors:
- HAGGAR Louise Elandra, HUTCHINSON Roger Brian
- Journal article citation:
- Mental Handicap, 19(2), June 1991, pp.51-55.
- Publisher:
- British Institute of Mental Handicap
Outlines the history and development of a facility at the Whittington Hall Hospital in Chesterfield, which offers users sensory stimulation and relaxation and describes methods of staff development.
Problem behaviours and people with profound and multiple handicaps
- Author:
- PRESLAND John L.
- Journal article citation:
- Mental Handicap, 19(2), June 1991, pp.66-72.
- Publisher:
- British Institute of Mental Handicap
Outlines the nature and causes of problem behaviours, describes the ABC assessment method (Antecedent - Behaviour - Consequence) and interventions including behavioural approaches, changes in the environment, and reinforcing appropriate behaviour.
The place of special villages and residential communities: the provision of care for people with severe, profound and multiple disabilities
- Editor:
- SEGAL Stanley S.
- Publisher:
- AB Academic Publishers
- Publication year:
- 1990
- Pagination:
- 121p.,bibliogs.
- Place of publication:
- Bicester
Set of papers from a symposium on alternatives to institutional care for people with learning difficulties. Includes papers on the place of special villages in the context of current and developing provision; the evolution from a mental handicap hospital into a village; the situation in the Netherlands; the closure of Darenth Park Mental Handicap Hospital and its effect on residents; and special villages and community care. Also outlines specific village projects.
Addressing challenging behavior in people with profound intellectual and multiple disabilities: analyzing the effects of daily practice
- Authors:
- POPPERS Petra, PUTTEN Annette A.J. van der, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 11(2), 2014, pp.128-136.
- Publisher:
- Wiley
As some people with profound intellectual and multiple disabilities (PIMD) are at a high risk of developing a challenging behaviour, it is useful to look at measures taken to prevent or diminish this type of behaviour. The authors undertook a study of how self-injurious, stereotypical, destructive, or aggressive behaviours are addressed in daily practice in residential facilities. A stratified sample of 30 people with the most severe and frequently reported challenging behaviours was selected from a dataset of 181 children and adults with PIMD. Individual comprehensive service plans were used to determine whether challenging behaviours were present and how these problems were addressed. In total, only 51.8% of the challenging behaviours that occurred were described in the individual plans, and for 53.7% of the challenging behaviours, strategies or interventions were included in the individual service plans. Only 17.2% of the cases contained goals formulated to prevent or diminish such behaviour. A significant positive relationship was found between the severity of challenging behaviour and the extent to which it was described in the individual comprehensive service plans. The authors also noted that interventions that were aimed at diminishing or preventing challenging behavior were highly simplistic, and virtually no goals were formulated to document, diminish, or prevent challenging behaviour in people with PIMD. (Edited publisher abstract)