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The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions

DAWES, Kate
CARLINO, Ashley
VAN DER BERG, Maayken
KILLINGTON, Maggie
May 2020

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Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.

 

Research design: Qualitative exploratory study using a phenomenological approach.

 

Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.

 

Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.

 

Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Disadvantage and disability: Experiences of people from refugee backgrounds with disability living in Australia

KING, Julie
EDWARDS, Niki
CORREA-VELEZ, Ignacio
HAIR, Sara
FORDYCE, Maureen
2016

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This study of people of refugee backgrounds explored how disability is culturally constructed in the family context, including barriers and enablers to social inclusion and service uptake in Brisbane, Australia. Key themes included the lived experiences of people with disability in their country of origin; experiences of the functioning of government and non-government services; family; barriers in communication and language; transport as a barrier to access; the community of people from their country within Australia; and service gaps and needs. Participants had experienced stigma in their country of origin, and for some this continued within their community of origin. Language and lack of engagement by government and non-government services contributed to service gaps and access barriers. Family remained important. People from refugee backgrounds living in Australia experience significant and compounding barriers to service access, and have unmet needs. They have a limited voice in the current policy context, and lack knowledge and support to facilitate interactions with the current system. Further research would assist in development of a more detailed understanding of these issues.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 1

Recognition, respect and rights: disabled women in a globalised world

MEEKOSHA, Helen
FROMAHDER, Carolyn
2010

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Following a statistically rich overview of the position of disabled women and girls globally, the position of disabled women and girls in Australia is reported. The human rights violations of disabled women in the context of violence, sterilisation and, motherhood and parenting are discussed. The history, evolution and current structure of the Women with Disabilities Australia (WWDA) organisation are described. Some of the challenges and successes of WWDA are also described including: dealing with authorities; negotiating the local, the national and the global; using the new communication technologies; and forming strategic alliances.

Child and family hubs and social capital

TAYLER, Collette
FARRELL, Ann
TENNENT, Lee
2004

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Research shows that social capital (ie social relations, networks based on trust and reciprocity, community groups and social supports) has a positive impact on child welfare and child health. This paper looks at how the integration of services for families and children (Child and Family Hubs) in Australia has the potential to build social capital, particularly in rural areas with limited access to social networks, and the capacity to enhance the well-being of families and children. It outlines key findings of the ACCESS pilot study and the research objectives of the IMPACT study. Although some of the suggestions and analysis need further evidence, this study, with a focus on rural and remote areas, can be applied to developing countries contexts

Measuring social capital : towards a theoretically informed measurement framework for researching social capacity in family and community life

STONE, Wendy
February 2001

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This paper is based on a study carried out in Australia to develop a measurement framework for social capital. It considers relations such as families, neighbours and friends, group and non-group relations, and work associations; and trust and relationship are examined. The study ends with principles for measuring social capital

vi family network

ROYAL INSTITUTE FOR DEAF AND BLIND CHILDREN

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This website provides low vision resources and information about upcoming low vision events in Australia. It also hosts the Australian Childhood Vision Impairment Register and an online parent forum and social network. This website is useful for people interested in visual impairment information and networks in Australia

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