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Book

All change: transition into adult life: a resource for young people with learning difficulties, family carers and professionals

Authors:
MALLETT Robina, POWER Margaret, HESLOP Pauline
Publisher:
Pavilion
Publication year:
2003
Pagination:
246p.
Place of publication:
Brighton

Transition can be a particularly complicated and stressful experience for a young person with disabilities and his or her family. All change looks at the process of transition in England and the main issues and choices that may arise, both in the lives of young people with learning difficulties and for their families. This resource is aimed at young people with learning difficulties as they pass through transition into adult life, as well as their family carers and professionals. It covers what happens when the young person leaves school, the choices they might need to make about further education, work, housing and leisure, the transition to adult services and the different options and types of support that are available

Journal article

Families’ views on their relatives with intellectual disability moving from a long-stay psychiatric institution to a community-based intellectual disability service: an Irish context

Author:
DOODY Owen
Journal article citation:
British Journal of Learning Disabilities, 40(1), March 2012, pp.46-54.
Publisher:
Wiley-Blackwell

In Ireland in recent years there has been a shift regarding the care of people with intellectual disability from a psychiatric hospital to residential homes within both community- and campus-based accommodation. This study aimed to explore families’ views regarding the movement of people with intellectual disability from a long-stay psychiatric institution to campus-based accommodation within a local intellectual disability service. The client group involved in the transfer consisted of 36 individuals who moved to 6 campus-based bungalows. Interviews were conducted with 11 family members and the data transcribed. Two key themes were identified: the positive transition resulting from the move; and the enlightened thinking that has developed as a consequence of the move. Overall the families expressed positive thoughts about the move to community houses, believing that life was better for their family members in the community compared to the institution. The study indicates the importance of care and care delivery from the family’s perspective, and the interaction of staff with families.

Digital Media

Food for thought: people with learning disabilities and family carers share their experiences of healthy eating

Authors:
SCOTTISH CONSORTIUM FOR LEARNING DISABILITY, (Producer)
Publisher:
Scottish Consortium for Learning Disability
Publication year:
2011
Pagination:
DVD, booklet
Place of publication:
Glasgow

In this DVD people with learning disabilities and their family carers tell their story of healthy eating. Their stories show how some people and families have overcome barriers to healthy eating. As well as healthy eating, the DVD also covers enjoying cooking and eating, having choice and control about what you eat, where you eat and who you eat with. It shows that healthy eating works best when everyone works together.

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

Quality of life: Its application to persons with intellectual disabilities and their families -introduction and overview

Authors:
BROWN Roy I., SCHALOCK Robert L., BROWN Ivan
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.2-6.
Publisher:
Wiley-Blackwell

The authors provide an overview of quality of life (QoL) conceptualization in the field of intellectual disabilities (ID), provide background information, and set an organizing framework for presenting concepts and concrete ideas for applying QoL. This framework is useful for three broad categories of application in the field of ID that form the application of QoL to individuals, groups of individuals, and to families. QoL thus can be used as a sensitizing notion that gives a sense of reference and guidance from the individual's perspective, focusing on the person and the individual's environment and provides a framework for conceptualizing, measuring, and applying the QoL construct. The applications also frame evaluation strategies for QoL research. The authors conclude that there is a need to identify relevant QoL evidence from the literature in a proactive way, and to ensure that it is methodologically sound, provides both quantitative and qualitative data, represents inter- and intra-individual variability, and illustrates changes over both the lifespan and across cultural settings.

Journal article

Quality of life: from concept to future applications in the field of intellectual disabilities

Authors:
VERDUGO Miguel A., SCHALOCK Robert L.
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.62-64.
Publisher:
Wiley-Blackwell

The authors consider conclusions reached with respect to quality of life (QoL) in this special issue of the 'Journal of Policy and Practice in Intellectual Disabilities'. The conclusions are examined in terms of both the past and present developments and within the context of three major areas. These three are (1) application of QoL through support and intervention; (2) the application to family QoL and the development of a working model; and (3) application of QoL for policy and evaluation. These conclusions are examined in relation to implications for public policy in terms of support and intervention, measurement and evaluation, with particular focus on a greater understanding and acceptance of the implications and structure involved in the QoL model and the importance of family QoL. The authors maintain that this should entail the development of applications that are empirically based and, wherever possible, take into account the complexity of mediator variables.

Journal article

Family quality of life: moving from measurement to application

Authors:
ZUNA Nina I., TURNBULL Ann, SUMMERS Jean Ann
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.25-31.
Publisher:
Wiley-Blackwell

Thus, the authors propose a theory of family quality of life (FQoL) designed to explain how various concepts - systems, performance, individuals, and family units - influence variations in FQoL. In defining each of the concepts, they describe the theory's application within the context of a family vignette, illustrating how professionals might apply theoretical propositions to their practice. In their application, they stress that the application of the FQoL theory they presented is not an end but rather a developmental stage that leads to further refinement of the FQoL theory. The application and development of this theory is a reciprocal process among researchers, practitioners, and families. Further, their FQoL theoretical model can serve to enable practitioners to examine which family, ecological, and programmatic variables are amenable to change to positively impact FQoL. Given this, they assert that FQoL is not a static concept but, instead, ebbs and flows during the course of raising a child with a disability. They call for further collaborative work among workers to continually improve the FQoL theory and to successfully implement it in practice.

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.

Journal article

Influences on mothers' employment when children have disabilities

Authors:
GORDON Meg, CUSKELLY Monica, ROSENMAN Linda
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 5(3), September 2008, pp.203-210.
Publisher:
Wiley-Blackwell

Empirical research has highlighted the constraints on mothers' workforce participation when children have disabilities, but the policies and associated strategies needed to address these issues have received less attention. Greater attention to explanatory theory and associated research is needed. The authors' paper identifies major explanatory concepts in studies of women's workforce participation, and examines the extent to which these have been tested in studying the workforce participation of mothers of children with disabilities. They also identify constructs and empirical research findings from the latter body of research that have implications for theories of all women's workforce participation. The analysis demonstrates that there are many potentially relevant constructs from theories of women's workforce participation that have not been applied to studies of mothers of children with disabilities. Similarly, some findings about the influence of disability-related factors on mothers' workforce participation have implications for operational constructs associated with theories of women's workforce participation. The authors' examination of theoretical frameworks and empirical research underscored the importance of exchange and cross-fertilization of ideas between disability-oriented research and that concerned with women's labour force participation.

Book Full text available online for free

Guide of best practice: from the services principles and service responses grant in Wales 2004/05-2006-07 for people with learning disabilities and their families

Authors:
WALES. Welsh Assembly Government, LEARNING DISABILITY WALES, MENCAP CYMRU
Publisher:
Wales. Welsh Assembly Government; Learning Disability Wales; Mencap Cymru
Publication year:
2008
Pagination:
39p.
Place of publication:
Cardiff

This guidance supplemented and expanded the 1994 Guidance and set out the service principles and service responses that authorities should adopt across a range of issues affecting adults and older persons with learning disabilities.

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