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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)
Hidden learning disability
- Author:
- WHITAKER Simon
- Journal article citation:
- British Journal of Learning Disabilities, 32(3), September 2004, pp.139-143.
- Publisher:
- Wiley
Although it has been suggested that about 2.5% of the population should be regarded as having a mild to moderate learning disability, only about 0.25% is registered. Why the disparity? It is suggested that although 2.5% may be a good estimate for people with IQs less than 70, a better estimate of the proportion who reach a dual criterion of having a low IQ and social/skill defects is about 1%. It is pointed out that even if the true prevalence rate of learning disability is nearer 1% than 2.5%, services still only know of a small proportion who could be considered to have a learning disability, and there are probably many people with unidentified learning disabilities. It is also noted that the term learning disability can be very confusing: it is not clear if it refers to people with IQs below 70, people with both intellectual and adaptive disabilities or people who have been given a learning disability label. Implications for services and research are discussed.
Unpacking the complexity of planning with persons with cognitive disability and complex support needs
- Authors:
- COLLINGS Susan, DEW Angela, DOWSE Leanne
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(1), 2018, pp.142-151.
- Publisher:
- Wiley
Background: Planners will engage with people with cognitive disability and complex support needs in the Australian National Disability Insurance Scheme, but the specific skills needed to build sustainable plans with this group are not yet known.Method: A qualitative study was conducted to explore the barriers and facilitators to planning with people with cognitive disability and complex support needs. Focus groups were held with 99 planning practitioners across metropolitan and regional locations in New South Wales, Australia. Results: Thematic analysis showed planners need to build a partnership based on mutual trust and respect with a person with complex support needs and harness a range of skills to respond to individual support needs, learning capacity, systemic hurdles and life challenges. Conclusions: Planner skills can be used to address barriers to planning for people with cognitive disability and complex support needs. Gaining skills took professional support and personal commitment. (Publisher abstract)
A tokenistic exercise? User involvement in service planning
- Authors:
- KAEHNE Axel, CATHERALL Chris
- Journal article citation:
- Learning Disability Today, August 2012, pp.22-24.
- Publisher:
- Pavilion
- Place of publication:
- Hove
In recent years, policy makers have been increasing service user involvement in service planning, normally via consultation processes. However, the scope of these consultations varies greatly. This study investigated the views of two parents of children with learning disabilities who had been involved in steering groups designed to plan new services. Two themes were highlighted: the parents felt unable to comment on the details of the services due to a lack of understanding of the terminology used; and the link between user consultation and service planning was unclear. The article concludes that more research is required in order to understand how to effectively include service users in service planning.
An assessment of policies guiding school emergency disaster management for students with disabilities in Australia
- Authors:
- BOON Helen Joanna, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(1), March 2012, pp.17-26.
- Publisher:
- Wiley
Weather-related disasters in Australia may increase in frequency and severity as a result of predicted climate variability. However, there is a lack of literature regarding school emergency response planning for vulnerable students with disabilities. This study explored the literature in place, with a view to making future recommendations for disaster management. The study's results indicate that disaster preparedness is under-resourced and insufficient consideration has been given to the emergency preparedness planning and management with respect to meeting needs of vulnerable students with disabilities. Although the particular needs of vulnerable students with disabilities are briefly noted in the various state governments' education policies, they have not been systematically considered in the context of overall disaster planning for Australian schools. The authors concluded that education authorities review current emergency management policies in a consultative manner as to minimise risk for students with disabilities in natural disaster emergencies.
Futures planning, parental expectations and sibling concern for people who have a learning disability
- Authors:
- DAVYS Deborah, MITCHELL Duncan, HAIGH Carol
- Journal article citation:
- Journal of Intellectual Disabilities, 14(3), September 2010, pp.167-183.
- Publisher:
- Sage
- Place of publication:
- London
This study investigated adult siblings of people who have a learning disability. It examines demographics, future plans, parental expectations and concerns over future care. A questionnaire was e-mailed to 200 siblings on the Sibs database, of which 21 questionnaires were returned. A full discussion regarding sibling support was reported by 57% of respondents; 33% stated this discussion had not taken place, and 9% were unsure. Fifty seven percent of participants reported no clear future plan. Where a plan did exist, 33% of respondents suggested it was fully agreeable to both them and their parents. Fifty two percent of respondents reported no difference between their wishes regarding their future role and parental wishes. Analysis revealed three key themes: satisfaction with services, parental influence, sibling concern about the future, futures planning, the impact of the disabled person upon sibling lives, and siblings’ needs. The authors suggest that further qualitative research into issues for siblings of adults who have a learning disability is needed.
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.
Age at death of people with an intellectual disability in Ireland
- Authors:
- LAVIN K. Emer, McGUIRE Brian E., HOGAN Michael J.
- Journal article citation:
- Journal of Intellectual Disabilities, 10(2), June 2006, pp.155-164.
- Publisher:
- Sage
- Place of publication:
- London
This study examined the age at death of people with an intellectual disability in Ireland. Using data from the National Intellectual Disability Database, the average age at death of 1120 people who died between 1996 and 2001 was 45.68 years, with no difference in lifespan between men and women. A more severe level of intellectual disability predicted shorter lifespan. In general, those requiring lower levels of day-to-day support and supervision had a longer lifespan. Those living in the family home had the shortest lifespan while those in hospital residential environments had the longest lifespan. Those not attending any day service had a longer lifespan than those attending a range of day services. There were also differences in age at death across different health board regions. These findings are discussed in light of their implications for service planning.
Valuing people: what has it meant for people with profound and multiple disabilities?
- Author:
- FYSON Rachel
- Journal article citation:
- Focus, 42, May 2005, pp.8-12.
- Publisher:
- RNIB
Reports on research from the Norah Fry Research Centre at the University of Bristol which aimed to find out what had changes had occurred within learning disability services since the publication of the 'Valuing People' white paper. The researchers looked at what was written in local plans for services for people with learning difficulties; interviewed self advocates and family carers about their experiences of being involved in Learning Disability Partnership Boards; interviewed chairs of Partnership Boards and interviewed commissioners of learning disability services about the changes they were trying to make in their area.
Planning for the future with adults with a learning disability living with older carers
- Authors:
- GORFIN Laura, McGLAUGHLIN Alex
- Journal article citation:
- Housing Care and Support, 7(3), September 2004, pp.20-24.
- Publisher:
- Emerald
Planning for the future for adults with a learning disability who live with older carers is an important aspect of the white paper Valuing People. Most research about future planning has tended to focus on the perspective of the family carer rather than the service user. This paper considers the findings of a project which directly sought the views of adults with a learning disability, including their experiences of living with their older carers and planning for future housing and support. Demonstrates that adults with a learning disability are very aware of the likelihood of an end to family care and have preferences about their future housing and support. However, planning for the future can be difficult because of the mutually supportive relationships that often exist in these families.