Resources search

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

Expand view

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.

Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper

SANDS, Therese
July 2020

Expand view

In 2020 the Disability Royal Commission released an issues paper on group homes. The issues paper asked 10 questions based on some of the key issues and barriers experienced by people with disability living in Group Homes.

This is Women With Disabilities Australia (WWDA) response to the issues paper which highlights key recommendations to improve the lives and experiences of people with disability living in group homes. The recommendations stem from the following key areas:

  • Living independently and being in the community
  • Intersectionality
  • Ableism, segregation and violence
  • Exposing and responding to violence, abuse, neglect and exploitation

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

Expand view

The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

The outcomes of individualized housing for people with disability and complex needs: a scoping review

OLIVER, Stacey
Gosden-Kaye, Emily Z
WINKLER, Dianne
DOUGLAS, Jacinta M
2020

Expand view

PURPOSE: Worldwide, disability systems are moving away from congregated living towards individualized models of housing. Individualized housing aims to provide choice regarding living arrangements and the option to live in houses in the community, just like people without disability. The purpose of this scoping review was to determine what is currently known about outcomes associated with individualized housing for adults with disability and complex needs.

 

METHODS: Five databases were systematically searched to find studies that reported on outcomes associated with individualized housing for adults (aged 18–65 years) with disability and complex needs.

 

RESULTS: Individualized housing was positively associated with human rights (i.e., self-determination, choice and autonomy) outcomes. Individualized housing also demonstrated favourable outcomes in regards to domestic tasks, social relationships, challenging behaviour and mood. However, outcomes regarding adaptive behaviour, self-care, scheduled activities and safety showed no difference, or less favourable results, when compared to group homes.

 

CONCLUSIONS: The literature indicates that individualized housing has favourable outcomes for people with disability, particularly for human rights. Quality formal and informal supports were identified as important for positive outcomes in individualized housing. Future research should use clear and consistent terminology and longitudinal research methods to investigate individualized housing outcomes for people with disability.

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

Expand view

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

Expand view

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.

3rd World Disability & Rehabilitation Conference (WDRC 2018) - Book of abstracts

O'CONNOR, Loren
Ed
November 2018

Expand view

The 3rd World Disability & Rehabilitation Conference 2018 was held from 12th and 13th November 2018 in Kuala Lumpur, Malaysia. People with disabilities and researchers, practitioners, policy makers, industry experts, university faculty and organizations along with advocates and volunteers working with people with disabilities participated and presented their original and unpublished results of conceptual, constructive, empirical, experimental, experiential or theoretical work through abstract and poster presentation. Total 33 participants presented their abstract and poster throughout this conference. The theme of WDRC 2018 was “Global advocacy and rights of people with disabilities”

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

Expand view

A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities: A comparison across Australia, Mexico and New Zealand

RIVAS VELARDE, Minerva C
O'BRIEN, Patricia
PARMENTER, Trevor R
2018

Expand view

This paper explores how the expressed health needs of Indigenous peoples with disabilities resonate with the mandate of Article 25 ‘Health’ of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The perceptions of indigenous peoples with disabilities are investigated, regarding their access to, and expectations of, health care. Their views are compared to those of health workers, senior bureaucrats and United Nations delegates. An exploratory case study approach was taken to compare three jurisdictions: Australia, Mexico and New Zealand. The data collection techniques used involved semi-structured interviews, focus groups and field notes. The findings suggest that the health needs of indigenous peoples with disabilities are largely underserved and misunderstood by health departments. Specialised and preventive health care for those with disabilities was found to be particularly problematic. Poverty, discrimination and disenfranchisement emerged as being the possible major determinants of the ill health experienced by indigenous peoples with disabilities. The findings and conclusions outlined in this paper advocate the need to build capacity and rights literacy for indigenous peoples with disabilities, particularly with respect to the CRPD, in order to enhance its impact on the health of indigenous people. A legitimate redistribution of resources and decision-making in response to the expressed health needs of indigenous peoples with disabilities is needed if the vision of the CPRD is to be realised in relation to Article 25. 

 

Disability and the Global South, 2018, Vol.5, No. 2

Let’s talk about sex: How people with intellectual disability in Australia engage with online social media and intimate relationships

DARRAGH, Judith
REYNOLDS, Louise
ELLISON, Caroline
BELLON, Michelle
2017

Expand view

The purpose of this study was to explore if people with intellectual disability access internet based social media, and if so, if they use it to form relationships that express their sexuality.

Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 11(1), Article 9.

https://doi.org/10.5817/CP2017-1-9

How CBM Australia supports engagement with government for disability inclusion and prevention

CBM AUSTRALIA
March 2016

Expand view

CBM Australia engages both directly and indirectly with governments. Indirectly, CBM Australia supports other organisations, for instance disabled people’s organisations or civil society organisations to engage with governments. This report looks at the different ways that CBM partners seek influence government and promote sustainability. It considers the different roles and relevance of activism, advocacy, service delivery and advisory approaches.

 

The cases in this report were identified and gathered through semi-structured interviews with CBM’s Program Officers, Technical Advisors, regional/country office and project staff in-country, as well as drawing on reports and evaluations. The report starts with a section explaining the four different approaches to working with government, followed by a brief introduction to each approach, highlighting what CBM are doing and the key lessons learned. Each section is followed by case studies giving more detailed insight into how CBM are engaging, key achievements, challenges and the lessons learned. Fifteen case studies covering key projects from CBM Australia’s International Programs and the Inclusive Development Team are described in this report.

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

Expand view

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

Post school transition : the experiences of students with disability

CHILDREN WITH DISABILITY AUSTRALIA (CDA)
December 2015

Expand view

The transition from school is an important period. All young people should be supported throughout this time to access options which allow them to meaningfully participate and contribute to our society as adults. Many young people with disability however have extremely poor post school transition experiences.

This report is based on the direct experience of young people with disability. The paper highlights key issues from current research, legislation and consultations with key stakeholders. It explores present and past school transition practices, barriers faced by students with disability and presents recommendations for improving outcomes and options for post school transition of students with disability

Twenty-five years of Community Living: Changes in Support Staff Perceptions

Wark, Stuart
Bleechmore, Kathleen
2015

Expand view

Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.

 

Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.

 

Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.

 

Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.

Human Rights

www.macao-tz.org
December 2014

Expand view

Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Strengthening participation of children and young people with disability in advocacy

SIMMONS, Dr. Catharine
ROBINSON, Dr. Sally
October 2014

Expand view

Participation by children and young people in advocacy and change-making can not only improve and foster positive change in their own lives, but also influence the lives of others. When young people’s participation is supported, meaningful and engaged, multiple benefits accrue; their perspectives and experiences bring a unique contribution and can result in rights-based empowerment, enacted citizenship and improved relationships. This has the potential to shape policy, to increase the relevance and responsiveness of organisations they use, and to influence change in their communities in positive ways

 

However, there are significant issues and a range of barriers that discourage, prevent or actively exclude children and young people with disability from participating. A culture of low expectations, social and cultural barriers, relationship and identity difficulties and practical hurdles exist for many young people. As a result, many are precluded from participation, particularly around change-making activities

 

This paper examines how meaningful participation of children and young people with disability in advocacy and change-making can be strengthened. In the paper CDA calls for the promotion of children and young people’s participation as active and valued community members

Inclusion in education : towards equality for students with disability

COLOGON, Kathy
2013

Expand view

All children in Australia have the right to an inclusive education. However, there are many barriers to the realisation of this right in the lived experience of children and families. Current efforts towards upholding the rights of all children are impeded by a lack of understanding of inclusive education and misappropriation of the term. Additional barriers include negative and discriminatory attitudes and practices, lack of support to facilitate inclusive education, and inadequate education and professional development for teachers and other professionals. Critical to addressing all of these barriers is recognising and disestablishing ableism in Australia.

This paper draws from recent research in addressing gaps in current understanding to provide a firm basis from which to inform research based policy development. Taking a rights-based approach, the paper focuses on developing a clear understanding of inclusive education and identifying strategies to enhance the education of all children in Australia

Community attitudes to people with disability : scoping project

THOMPSON, Denise
et al
2011

Expand view

"This report investigates current research on community attitudes towards people with disability. It was an initial step towards building an evidence base on Australian community attitudes to people with disability, on the impact of these attitudes, on outcomes for people with disability, and on effective policies for improving community attitudes towards them"
Occasional Paper #39
Note: Available in pdf and word formats

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

MEEKOSHA, Helen
FROMAHDER, Carolyn
2010

Expand view

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.

Pages

E-bulletin