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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.
Breaking bread, nourishing connections: people with and without disabilities together at mealtime
- Authors:
- SCHWIER Karin Melberg, STEWART Erin Schwier
- Publisher:
- Paul H. Brooks
- Publication year:
- 2005
- Pagination:
- 280p.
- Place of publication:
- London
Mealtimes are about much more than the physical act of eating. They are also about enjoying the company of others, nourishing human connections, and participating in a meaningful social ritual. But sometimes, people with disabilities miss out on these essential aspects of dining. Parents, friends, and human services professionals can change that with this warm and engaging guide to fostering pleasurable, fully inclusive mealtimes for people with disabilities. Developed by family members who consulted with a nutritionist, human services workers, educators, and people with disabilities and their families, this practical handbook helps readers support individuals as they choose what, where, when, and how they eat.
When parents relinquish care: informal support networks of older people with intellectual disability
- Author:
- BIGBY Christine
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 10(4), 1997, pp.333-344.
- Publisher:
- Wiley
Adults with intellectual disability lack the two key providers of informal support in later life, children and a spouse. Using semi-structured interviews this qualitative study examines the informal support networks of 62 older people with intellectual disability who had left parental care after mid-life. Findings indicate that, for this subgroup of older people, normative family roles such as 'protector' and 'facilitator' were fulfilled by informal network members despite the absence spouses or children.
Circles of support and mutual caring
- Author:
- TOWERS Christine
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- 5p.
- Place of publication:
- London
A number of people with learning disabilities are providing regular and substantial care for their ageing relatives. In many cases, neither person would be able to remain living independently without this support. This is known as mutual caring. This booklet is aimed at workers and other people who know these families. The aim is to encourage people to think about the importance of support networks for these families and to develop Circles of Support to improve these. A Circle of Support is a group of family, friends and supportive workers who come together to give support and friendship to a person. The booklet describes: why Circles of Support are a good idea for older families where there is mutual caring; how Circles of Support can make a difference to older families where people are supporting each other; and 10 steps to setting up a Circle of Support. It also describes a case study of how a Circle of Support is helping a mother and daughter make choices and changes.
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.
Future aspirations of students with severe learning disabilities and of their parents on leaving special schooling
- Authors:
- SMYTH Marisa, McCONKEY Roy
- Journal article citation:
- British Journal of Learning Disabilities, 31(1), 2003, pp.54-59.
- Publisher:
- Wiley
The majority of school-leavers over 2 years from two special schools in Belfast were individually interviewed as were their parents. The almost unanimous wish of the young people to have a job was not matched by the parents, although nearly half of the parents did express the wish that they would have at least part-time work. The majority of young people and the parents envisaged living with the family albeit for different reasons. However, there was a strong emphasis on fostering the young person's independence and living with friends. Consequently, only a minority of families mentioned their son or daughter moving into traditional residential care settings. It is argued that it is not just the availability of services that need to increase in order to meet the aspirations of the young people and their parents; major changes are also needed in their form and function.
Positive approaches to challenging behaviour: supporting relationships - families, carers and friends; workbook 6; supporting the "certificates in working with people who have learning disabilities"
- Authors:
- HARRIS John, HEWETT Dave, HOGG James
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2001
- Pagination:
- 50p.
- Place of publication:
- Kidderminster
- Edition:
- 2nd
Part six of a set of six interactive workbooks aimed at new and more experiences staff, managers who supervise staff, and training managers in services for people with learning difficulties. This book focuses on supporting relationships.
Meeting the challenge of learning disabilities in adulthood
- Author:
- ROFFMAN Arlyn J
- Publisher:
- Paul H. Brookes
- Publication year:
- 2000
- Pagination:
- 336p.,list of orgs.,bibliog.
- Place of publication:
- Baltimore, MD
Explores the impact of learning difficulties on adult life and offers strategies for coping with these challenges as they arise. Uses the experiences of people with learning difficulties, a literature review and experience of working with people with learning difficulties to look at issues such as: mental health; family relationships; friendships and relationships; partners; parenting; day to day living; further education; employment; and quality of life. Also examines the impact on adult life of attention deficit and hyperactivity disorders.
Making decisions: best practice and new ideas for supporting people with high support needs to make decisions
- Authors:
- BEAMER Stephanie, BROOKES Mark
- Publisher:
- Values into Action
- Publication year:
- 2001
- Pagination:
- 92p.,list of orgs.,bibliog.
- Place of publication:
- London
This report is written for service providers, families, friends, carers and other who support people with learning difficulties who have high support needs to make choices. It uses real life stories to challenge the idea that people with high support needs cannot make their own decisions. It discusses current practice and law, suggesting both are often limited in vision and technique, and offers a model of supported decision making as a solution. It is accompanied by a workbook 'It's your choice' written in plain English, with pictures, to tell people with learning difficulties about making decisions.
Empowerment in everyday life: learning disability
- Editors:
- RAMCHARAN Paul, et al
- Publisher:
- Jessica Kingsley
- Publication year:
- 1997
- Pagination:
- 282p.,bibliogs.
- Place of publication:
- London
Takes a 'bottom up' approach to empowerment by starting with an examination of the lives and relationships of people with learning difficulties, their families and friends. From these experiences, questions are then asked about how policy making, service provision and state legislation might be implemented in ways which would maximise self-determination, equality and the fight for citizenship by people with learning difficulties and to provide for an empowered life and lifestyle.