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Commentary on a “unified approach to behaviours that challenge”: my freedom – the perspective of people with learning disabilities
- Authors:
- CHAPMAN Steve, et al
- Journal article citation:
- Tizard Learning Disability Review, 25(3), 2020, pp.145-151.
- Publisher:
- Emerald
Purpose: As self-advocate leaders, the authors aim to present the perspective of people with learning disabilities on “Behaviour that Challenges: A Unified Approach”. Building on firsthand accounts which reveal compassion and cruelty in the health-care system, the authors propose ways of working, which confirm and add to the thinking in “A Unified Approach”, especially “Capable Environments”. Design/methodology/approach: To ensure integrity, the authors engaged contributors with lived experience of admission to secure care after acting in ways that put themselves or others at risk. The authors included the perspective of people whose severe learning disabilities limit them to few or no words as best they could by interviewing their parents. The authors were supported and advised in the writing of this commentary while retaining full control throughout. Findings: While recognising compassionate care, the authors suggest the provider’s power over a person’s life is a central reason for the care system’s vulnerability to the cruelty evident in firsthand accounts. The authors propose practical ways to offset this power. Firsthand accounts suggest the key features of capable environments are communication, valuing families and developing a valued, caring, well-trained workforce. Lived experience in workforce training and peer-support to individuals offer great potential to transform outcomes. Originality/value: The perspectives of diverse contributors with learning disabilities bring lived experience insight to the challenges of “behaviour that challenges”. The authors aim to add value by blending lived experience viewpoints with the emotion of firsthand accounts of care. The insights of lived experience – too often a marginal consideration in health-care design – are presented here as central to care that fully achieves what people want and need. (Edited publisher abstract)
Helping people to have a ‘good death’
- Author:
- TRUSTAM Rosemary
- Journal article citation:
- Community Living, 23(3), Spring 2010, pp.22-23.
- Publisher:
- Hexagon Publishing
The author describes her recent experience with her 89 year old mother, and how it caused her to reflect on some practices which have enabled what she calls ‘a good death’. The article outlines an end of life care strategy, which involves: being treated with dignity and respect; being without pain and other symptoms; being in familiar surroundings; and being in the company of close family and friends.
Communication for person centred planning
- Authors:
- GROVE Nicola, McINTOSH Barbara
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2005
- Pagination:
- 17p.
- Place of publication:
- London
This information pack was designed to help staff, self advocates, families and friends to make communication better. The aim is to help people who are working in a Person Centred way, to better understand the communication styles of self advocates.
Promoting the safety of children and young people with intellectual disability: perspectives and actions of families and professionals
- Authors:
- ROBINSON Sally, GRAHAM Anne
- Journal article citation:
- Children and Youth Services Review, 104, 2019, p.104404.
- Publisher:
- Elsevier
Background: Children and young people with intellectual disability experience high rates of abuse and neglect. In this Australian study, both children and young people with disability and their supporters shared their perspectives on safety and harm. This paper discusses how family members and professionals perceived and responded to priorities that had been separately identified by children and young people. Method: Semi-structured interviews were conducted with six family members and ten disability support professionals working in a range of contexts. Data was coded and thematically analysed. Results: Participants identified strategies that children and young people used when they felt unsafe, and tensions they regularly faced that made it difficult for them to be safe. Both family members and support professional perceived a need to build confidence and capability, embed support, and act on behalf of children and young people. Relationships were a priority for families, while professionals focused more on skill development. Systems were seen to play a causative role in impairing the capacity of children and young people to stay safe, through overly bureaucratic risk orientation, using too many staff young people didn't know, and poor understanding of disability-related needs in mainstream settings. Conclusions: The key role of supporters in building capability and advocating for children and young people is affirmed, along with the need for accessible, evidence-informed education around safety and positive relationship building, and ways to promote the agency of children and young people. (Edited publisher abstract)
Family support as reflective practice
- Editors:
- DOLAN Pat, CANAVAN John, PINKERTON John
- Publisher:
- Jessica Kingsley
- Publication year:
- 2006
- Pagination:
- 304p.
- Place of publication:
- London
Family support is an increasingly important strategic approach to welfare services for children and families. This resource for all professionals engaged covers core issues in family support. These include the importance of community, the role of statutory and voluntary agencies, youth advocacy, culturally appropriate family support, child protection, disability services and effective means of evaluation.
The impact of person centred planning
- Authors:
- ROBERTSON Janet, et al
- Publisher:
- Lancaster University. Institute for Health Research
- Publication year:
- 2005
- Pagination:
- 125p.
- Place of publication:
- Lancaster
The initial results show that person centred planning led to positive changes for individuals. Some changes were short-lived, but some continued beyond the end of the project. People experienced ongoing positive changes in the size of their social networks, their circle of friends, their presence in the community and the extent and range of their daytime activities. Changes were also seen in people’s contact with their families and the amount of choice available to them, but these improvements were not sustained. People with a plan were more likely to have access to some advocacy and health services. Some negative changes were reported in relation to people’s emotional, behavioural and health problems. These findings are not entirely surprising given that some people find change stressful; that new environments are more likely to seem risky (whether they really are or not); and that person centred planning tends to highlight existing health problems and get help with them. The overall message is that person centred planning was beneficial for people taking part in the study. It is also effective as a policy in promoting community involvement, changing daytime activities, extending contacts with families and friends, and improving choice for people with learning disabilities.
Family action for inclusion in education
- Author:
- MILES Susie
- Publisher:
- Enabling Education Network
- Publication year:
- 2002
- Pagination:
- 115p.
- Place of publication:
- Manchester
Celebrates the stories of family-based advocacy organisations which have helped to transform education systems in southern Africa, South Asia, Europe and Australia. Quotations from family and community members provide the reader with valuable insights into the activities, thoughts and feelings of parents involved in fighting for the inclusion of their disabled children. In countries of the South the challenge of providing education for all children is not being met. Disabled children are among the most marginalised from education.This guide has been written for family and community members who may feel isolated and want to form a support group, or advocacy organisation, to challenge exclusion. It will also be of interest to those committed to promoting more inclusive practices in education.
Paying the piper and calling the tune?: the relationship between parents and irect payments for people with intellectual disabilities
- Authors:
- WILLIAMS Val, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 16(3), September 2003, pp.219-228.
- Publisher:
- Wiley
The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities. The paper draws on a UK-wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families. Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family. The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control.
Moving from long-stay hospitals: the views from Northern Irish patients and relatives
- Authors:
- McCONKEY Roy, et al
- Journal article citation:
- Journal of Learning Disabilities, 7(1), March 2003, pp.78-93.
- Publisher:
- Sage
A cohort of 68 persons had been resettled from a long-stay hospital over a 5 year period, with over 90 percent moving to residential and nursing homes. Interviews were conducted with 39 residents and 34 relatives. Residents had more likes and fewer dislikes about their present accommodation than about the hospital. Nearly all were happy to have moved. A minority of families had been unhappy before the move. After the move, all families felt the residence was at least equivalent to the hospital, with most rating it as much better. Families liked the staff, the atmosphere, the buildings, and the individual rooms. They disliked the congregated living models, the failure of people to move on, and the dearth of social networks. Recommendations include increased awareness of new housing and support options, regular reviews of clients' needs and aspirations, and opportunities for access to independent advocacy services.
More than one wavelength: identifying, understanding and resolving conflicts of interest between people with intellectual disabilities and their family carers
- Authors:
- WILLIAMS V., ROBINSON C.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(1), 2001, pp.30-46.
- Publisher:
- Wiley
This article describes conflicts of interest in families which include someone with intellectual disabilities. Data were taken from a study concerned with the 1995 Carers Act. The research examined the experiences and views of 51 families who had some kind of assessment by a social services department. Cases were analysed where it was found that carers, the people for whom they cared and the assessors did not agree about such conflicts. Argues that assessors sometimes stereotyped families and spoke of conflicts of interest when the situation was more complex. In particular, the real conflict was often between the whole family and an inadequate service system that did not offer enough support or choices to the individual. Conflicts were related to three major motives driving carers: the need for a break from caring; the need to speak for their disabled relative; and their concern for standards of behaviour. The present authors report on how these situations were handled by assessors and conclude with some recommendations for good carer assessments which will help to resolve conflicts of interest. Concludes that a greater degree of informed choice for individuals with intellectual disabilities will in itself resolve many potential conflicts of interest. -------------------------------------------------------------------------------- Paper accepted September 2000