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Inclusion or outcomes? Tensions in the involvement of people with learning disabilities in strategic planning
- Authors:
- FYSON Rachel, FOX Liz
- Journal article citation:
- Disability and Society, 29(2), 2014, pp.239-254.
- Publisher:
- Taylor and Francis
Social inclusion is a key principle that underpins the provision of services for people with learning disabilities in England. Learning Disability Partnership Boards, which are responsible for local strategic planning of learning disability services, hold a particular role in promoting inclusion since they are required both to operate inclusively and to achieve inclusive outcomes. This study sought to explore the extent to which these ambitions for inclusion were being achieved. It consisted of three phases: a scoping exercise to elicit the views of key stakeholders; a postal survey of Partnership Boards (response rate 51%); and semi-structured interviews with Partnership Boards members in six local authorities. Findings suggest that Partnership Boards are struggling to fulfil their dual role, with tensions emerging between the desire to operate in fully inclusive ways and the ability to affect strategic change within local services. (Publisher abstract)
Responsive services for people with learning disabilities from minority ethnic communities
- Authors:
- CATON Sue, et al
- Journal article citation:
- British Journal of Learning Disabilities, 35(4), December 2007, pp.229-235.
- Publisher:
- Wiley
This article reports the results of a postal questionnaire survey carried out to explore the responsiveness and appropriateness of services for people with learning disabilities from minority ethnic communities in the North West of England. Twenty-one learning disability service commissioners or service providers completed the questionnaire. Results indicated that services were influenced by legislation and guidelines which help services develop specific programmes. Organizational culture also played a role in how services respond. Respondents reported that a variety of new services were currently being developed. Individual staff members and good organizational support were most cited as the factors that facilitate effective policies, practices, and procedures whereas problems regarding funding were most frequently cited as barriers. The respondents detailed evidence of some work being carried out at the grass roots level, but the responses indicate that a core theme is the marginalization of the issue of meeting the needs of people from minority ethnic groups.
Parents’ experience of support in Sweden: Its availability, accessibility, and quality
- Authors:
- NOWAK Herawati I., BROBERG Malin, STARKE Mikaela
- Journal article citation:
- Journal of Intellectual Disabilities, 17(2), 2013, pp.134-144.
- Publisher:
- Sage
- Place of publication:
- London
Semi-structured interviews were conducted with six parents of children with intellectual disabilities, in the Western region of Sweden. The aim of the study was to explore and to gain a deeper understanding of parents’ experiences of received support for them and their children with intellectual disabilities. The study focused particularly on their experiences of the availability, accessibility, and the quality of services. Parents in this study were unsure about what the diagnosis meant specifically for their child as well as for their whole family. Moreover, the parents experienced great difficulty in obtaining information about available services, which resulted in feelings of helplessness to some. Parents also reported that although services are available, they were not easily accessible. Lastly, parents felt that the quality of care and support were to some extent inadequate, as no attention was paid by professionals to their actual needs or wishes. (Edited publisher abstract)
The experiences of staff taking on the role of lay therapist in a group-based cognitive behavioural therapy anger management intervention for people with intellectual disabilities
- Authors:
- STIMPSON Aimée, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(1), 2013, pp.63-70.
- Publisher:
- Wiley
This study forms part of a wider research trial aiming to evaluate the effectiveness of a manualised cognitive behavioural therapy (CBT) anger management intervention delivered to people with intellectual disabilities by staff in a day service setting. The aim of this study was to explore the experience of staff with regard to their role as ‘lay therapists’ facilitating CBT groups. The staff were trained and supervised by clinical psychologists. Two ‘lay therapists’ facilitated each of the groups without the presence of the clinical psychologist. Nine ‘lay therapists’ were interviewed 2–6 weeks after the last group session. Their experiences were explored by means of interpretative phenomenological analysis (IPA). Several key themes emerged from the interview data: hopes and fears; having a framework; making it work; observing progress; ingredients of success; the therapist role; and taking the group forward. The findings indicate that, although the therapist role had initially appeared daunting, the participants' experiences were perceived as positive for themselves, the service users, as well as the relevant organisation.
A survey of learning disability inpatient services in Scotland in 2007
- Authors:
- PERERA Chanima, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 13(2), June 2009, pp.161-171.
- Publisher:
- Sage
- Place of publication:
- London
A national review of learning disability services in Scotland, The Same As You? recommended that Health Boards should close all long stay beds by 2005 and reduce assessment and treatment places to specified levels. A psychiatry-led service planning study was carried out in 2007 to find out whether these recommendations had been met. The extent of delayed discharges was also investigated. All 15 Health Boards in Scotland responded and supplied the requested information. There were 388 adults with learning disabilities within inpatient services, 91 of whom were within forensic learning disability services. The age, gender, reasons for admission and length of stay are reported for this inpatient population. Recommendations are made for future recording of delayed discharges and the adequacy of the number of assessment and treatment inpatient places in Scotland is discussed.
A failing partnership
- Author:
- FYSON Rachel
- Journal article citation:
- Viewpoint, May 2008, pp.28-29.
- Publisher:
- Mencap/Gateway
The University of Nottingham has undertaken recent research to investigate the impact of Learning Disability Partnership Boards. Partnership Boards were intended to: provide a place where service users and carers are given a voice and also operate as strategic planning bodies. This article summarises key findings of the research which found that the effectiveness of Partnership Boards is mixed, and largely depends upon the commitment of individual members. The research was commissioned by Mencap on behalf of the Learning Disability Taskforce.
Is concept-mapping an effective method of introducing complex interventions into intellectual disability services?
- Authors:
- SJOUKES L., HARTELOH M., EVENHUIS H.M.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(2), June 2006, pp.133-135.
- Publisher:
- Wiley
As many adults with intellectual disability (ID) have an increased risk of low vision, ID service providers should play an active role in vision rehabilitation. However, low vision rehabilitation is a new and complex intervention for many providers in this field. To increase awareness of vision rehabilitation, it was proposed that the process of concept-mapping be tested to see whether it would lead to increased acceptance of vision rehabilitation. In this test, the use of concept-mapping appeared to be a satisfactory method for increasing awareness of professionals and middle managers of the complexity of vision rehabilitation, but it was found that it can only be useful for change if connected to a strategic decision by top management and the adoption of an action plan by the service provider.
Impact of COVID-19 on the burden of care of families of people with intellectual and developmental disabilities
- Authors:
- NAVAS Patricia, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 35(2), 2022, pp.577-586.
- Publisher:
- Wiley
Aim: This study analysed the impact that COVID-19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities. Method: Data on 323 family members (M = 52.3 years old; SD = 10.5) were collected through an online survey, which was focused on analysing difficulties experienced and service provision during lockdown. Results: Many families (66.3%) have seen their level of stress increased during lockdown because of, among other reasons, a greater burden of care. Difficulties were associated with the closure and changes in disability-related services. Families of people with extensive support needs have generally experienced greater difficulties. Conclusion: Support services should have been considered essential services during lockdown. The failure to receive support has resulted in excessive burden on families, who had to assume a multitude of roles to support their family member with intellectual and developmental disability. (Edited publisher abstract)
Professionals' perspectives on partnering with families of individuals with ID
- Author:
- JOHN Aesha
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 17(3), 2020, pp.247-255.
- Publisher:
- Wiley
Since individuals with intellectual disability (ID) and their parents rely on a wide variety of support and services from helping professionals such as social workers, teachers, and therapists, family‐professional partnership is an important area of research. Although past research sheds light on parental views on partnership, relatively few studies have focused on professionals' perspectives. Specific Aims: The aim of this study was to capture the perspectives of ID professionals on partnering with families of individuals with ID. Method: Forty‐three ID professionals participated in a focus group that included open‐ended questions on characteristics of their most and least effective partnerships with families, and supportive and challenging factors in forming partnerships with parents. Findings: Thematic analyses of the focus group responses helped uncover five themes: (1) clear, honest, and respectful communication between professionals and families, (2) the quality of relationship between the professional and the client's family, (3) professionals' and parents' knowledge and experience in the ID field, (4) degree to which a family is involved, and (5) realistic expectations. Discussion:These findings can inform both the training of future professionals and parent education initiatives, and in turn, positively impact the quality of parent‐professional partnerships. (Publisher abstract)
Quality of practice in supported accommodation services for people with intellectual disabilities: what matters at the organisational level
- Authors:
- BIGBY Christine, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(3), 2020, pp.290-302.
- Publisher:
- Taylor and Francis
Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services. Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support. Results: Qualitative analyses revealed three conceptual categories: senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice; understood Active Support; and strongly supported practice leadership. In these organisations practice leadership was structured close to everyday service delivery, and as part of frontline management. Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures. (Edited publisher abstract)