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Book Full text available online for free

Co-production in transforming care: checking if co-production is happening

Author:
LOCAL GOVERNMENT ASSOCIATION
Publisher:
Local Government Association
Publication year:
2017
Pagination:
17
Place of publication:
London

This guide explains what co-production means, how to check if co-production is happening, and what Transforming Care Partnerships can do to support co-production. Transforming Care Partnerships are the groups of people working together to improve services and support for people with a learning disability and people with autism who display behaviour that challenges. The guide suggests that key indicators that co-production is happening include: there is a co-produced policy on co-production that shows the way everyone will work; there is a clear plan on co-production that has been co-produced; how the Transforming Care Partnership works is built on the co-production principles; all communication is open and easy to understand; and there is evidence of a ‘shift in power’ to people and families from professionals. (Edited publisher abstract)

Journal article

Disposable dispositions: reflections upon the work of Iris Marion Young in relation to the social oppression of autistic people

Author:
MILTON Damian E.M.
Journal article citation:
Disability and Society, 31(10), 2016, pp.1403-1407.
Publisher:
Taylor and Francis,

This brief commentary piece looks to apply the theories of Iris Marion Young to the social position and oppression of autistic people, as previously theorised by Milton. The concepts of ‘Asymmetrical symmetry’ and the ‘Five faces of oppression’ are explored in this regard. The article concludes by arguing that autistic people, particularly those who have significant intellectual impairments, can be socially marginalised to the extent of occupying the social position of ‘non-human’ with the staggering consequences for social well-being that this implies. (Publisher abstract)

Journal article

The use of community treatment orders in an intellectual disability service

Authors:
PERERA Bhathika, SHAIKH Abdul, SINGH Niraj
Journal article citation:
Advances in Mental Health and Intellectual Disabilities, 7(3), 2013, pp.129-134.
Publisher:
Emerald

An audit was conducted among Consultant Psychiatrists in intellectual disability psychiatry in Nottinghamshire Healthcare NHS Trust to explore how Community Treatment Orders (CTOs) are used in people with intellectual disability in the UK. Each consultant was asked to provide information on demographic data of their patients on CTOs, reasons for being on a CTO, conditions specified, patients' capacity to consent and their understanding of their CTOs. Conditions of CTOs were analysed using thematic analysis. There were 17 CTOs done for patients with intellectual disability from November 2008 to May 2011. Mean age was 38 with a range of 20-59. All patients had a mild or moderate intellectual disability. Only a small percentage of patients had a diagnosis of schizophrenia. More than 50 per cent had a diagnosis of pervasive developmental disorder (PDD). All patients had behavioural problems as a reason for being on a CTO. About one third of patients did not have any understanding of their CTOs. Themes of conditions were focused on providing a structured life to prevent relapse of the mental disorder. The study highlights that CTOs are used differently in the intellectual disability population. CTOs are adapted to use for patients with behavioural challenges and PDD in an intellectual disability population. This contrasts with its common use to manage non-compliance with medication in patients with schizophrenia in the general adult population. This paper also suggests the main themes of conditions which clinicians can use when deciding on CTO conditions. (Edited publisher abstract)

Journal article

Context influences the motivation for stereotypic and repetitive behaviour in children diagnosed with intellectual disability with and without autism

Authors:
JOOSTEN Annette V., BUNDY Anita C., EINFELD Stewart L.
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 25(3), May 2012, pp.262-270.
Publisher:
Wiley-Blackwell

Stereotypical and repetitive behaviours are part of normal child development. However while they diminish during the second year in typically developing children they often continue in those with intellectual disability and autism. Motivation seems to change with context, but there is little empirical evidence to support this. Data describing stereotypic behaviours from 279 Revised Motivation Assessment Scales (MAS:R) was evaluated using Rasch analysis. Data were gathered from two groups of Australian children (mean age 9.7 years): Group 1 with intellectual disability (n = 37) and Group 2 with both intellectual disability and autism (n = 37). Behaviour was examined in three contexts: free time, transition and while engaged in tasks. MAS:R distinguishes two intrinsic motivators: enhanced sensation and decreased anxiety and three extrinsic motivators: seeking attention or objects or escape. Significant differences in motivators were observed during free time and transition. No one motivator predominated while children were engaged in tasks. For both groups, sensory enhancement was a more likely motivator in free time and anxiety reduction was a more likely motivator during transition. Transition was the context most likely to influence extrinsic motivators, but there were significant differences between the groups. The authors conclude that context influences the motivation for stereotyped and repetitive behaviours; transition appears to have a particularly powerful effect.

Book Full text available online for free

Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 adult psychiatric morbidity survey

Authors:
BRUGHA T., et al
Publisher:
NHS Information Centre
Publication year:
2012
Pagination:
31p.
Place of publication:
London

This report extends the 2007 Adult Psychiatric Morbidity Survey. The original data has been combined with data from a new study of the prevalence of autism among adults with learning disabilities living in private households and communal care establishments in Leicestershire, Lambeth and Sheffield. For this latter study, 290 adults were recruited resulting in 83 interviews with those living in private households. Sixty four per cent of communal care establishments approached took part in the study leading to 207 interviews. The overall prevalence of autism from the combined data was 1.1 per cent. The prevalence of autism was higher in men (2.0 per cent) than women (0.3 per cent). The learning disability study demonstrated that the prevalence of autism increased with greater severity of learning disability/lower verbal IQ. Sex differences were less marked in adults with learning disabilities compared with the general population. The estimated prevalence of autism changed very little when the data were re-analysed to take into account that the prevalence of autism might be higher or lower in other settings, such as prisons. This study has demonstrated that autism is common among people with a learning disability. Taking this into account gives an estimated overall prevalence of autism in England of 1.1 per cent; compared with a previous estimate of 1.0 per cent in the APMS (2007).

Book Full text available online for free

A host of opportunities: second NHSN survey of family based short break schemes for children and adults with intellectual and other disabilities in the Republic of Ireland

Author:
HANRAHAN Des
Publisher:
National Home-sharing and Short Breaks Network
Publication year:
2010
Pagination:
70p., bibliog.
Place of publication:
Mullingar

The National Home-Sharing and Short Breaks Network is an association which supports the use, promotion and provision of host family based services for Irish citizens with intellectual disability, physical disability and autism. While the majority of respite services are centre based, the family-based model of providing short breaks to people with disabilities involves recruiting approved individuals, couples and families who agree to provide personalised breaks in their own homes as an alternative to traditional residential respite. In this report the terms short breaks with volunteer host families or paid contract families, and home sharing provided by host families are used in place of respite care and residential care respectively.  The report describes the methodology for the questionnaire based survey of 30 schemes, run by 12 separate organisations, that provided overnight breaks with host families. It presents information from the survey about the hosts, the guests, and other issues. It concludes with a discussion of the findings, and makes recommendations for policy makers, managers and further research.

Journal article

Family fall-outs and how to avoid them

Author:
SCOWN Steve
Journal article citation:
Learning Disability Today, April 2010, pp.26-27.
Publisher:
Pavilion
Place of publication:
Hove

The families of people with learning disabilities and autism often complain of feeling unimportant and left out when service providers get involved. Their impression can be that important decisions are made without their involvement, and that all their years of love and intimate knowledge go unnoticed and unheard. Professionals have as their priority the well-being of the person at the centre, not their family, and may even see the parents and families as meddlers. This article argues that most family members are just trying to do the best for their relative, and that most people with learning disabilities will benefit from having their family actively involved in their lives and forming an integral part of their support team. The article discusses the challenges of how to develop a family-friendly approach which involves a cultural shift in services and different ways of working with families, and also the need to adapt to the changing social market that personalised support has introduced and proactively engage with families. It describes a family reference group, Forward with Families, set up by the support provider Dimensions, in order to assist in developing and implementing a whole organisational approach.

Journal article

Representation of people with intellectual disabilities in a British newspaper in 1983 and 2001

Authors:
WILKINSON Penny, MCGILL Peter
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 22(1), January 2009, pp.65-76.
Publisher:
Wiley-Blackwell

Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983 the examine the media representation of people with intellectual disabilities. There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More 'people-first' terminology was now used except in respect of people with autism. Articles systematically under-represented complexity and severity of need. Policy and service changes may have contributed to the decline of medically- and child-related representations within non-specific intellectual disabilities. The continued over-representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.

Book

Autism 24/7: a family guide to learning at home and in the community

Authors:
BONDY Andy, FROST Lori
Publisher:
Woodbine House
Publication year:
2008
Pagination:
177p., bibliog.
Place of publication:
Bethesda, MD

If your son or daughter is over-stimulated by noisy places or has trouble communicating or interacting with people, then everyday activities like going to the playground or helping out with household chores may seem outside your child's repertoire. The authors, founders of the award-winning Pyramid Approach to educating children with autism, show how it is possible to keep family life running smoothly and teach a child with autism to participate in important and routine family activities at home and in the neighbourhood. And their teaching strategies can be used during the course of everyday life without making too many adjustments or converting your home into a school. In a reassuring, easy-to-read style this book encourages parents to pinpoint times when their child's behaviour or lack of skills seems to interfere with family functioning. This step helps identify what to teach your child and what goals to set. Other issues related to What To Teach include: Motivational strategies and powerful reinforcements - using naturally occurring rewards and token systems; teaching functional communication skills - the difference between imitation, responding, and initiating communication, as well as how to resolve different types of communication challenges; and, creating opportunities for learning - determining the steps to teach a particular skill and a routine where you can incorporate teaching the desired skill. Issues related to How To Teach include: Teaching techniques: how to choose prompts (verbal, visual, physical, gestural) and how to eliminate them; shaping (rewarding gradual improvement); and, video modelling; managing challenging behaviour: knowing when to teach a new behaviour versus when to change the environment; and, evaluating what you are doing: how to measure progress and collect data. "Autism 24/7" gives families confidence and concrete tools to integrate their child with autism into life at home and in their community as much as possible.

Book

My choice: an accessible guide to making choices for people with learning difficulties and their supporters

Authors:
RAYMOND Christina, BARKER Vicky
Publisher:
Speaking Up
Publication year:
2006
Pagination:
30p.
Place of publication:
Cambridge

Everyone has the right to make choices but sometimes it can be difficult and, especially if a person is not used to making choices. The 2007 Mental Capacity Act gives people with learning difficulties more opportunities to choose for themselves and this book will be a huge help in making choices, with a very helpful pull out choices chart. This book is written by people with learning difficulties for people with learning difficulties.

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