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A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Perspectives on access and usage of assistive technology by people with intellectual disabilities in the Western Cape province of South Africa: Where to from here?

BOOT, Fleur H
KAHONDE, Callista
DINSMORE, John
MACLACHLAN, Malcolm
2021

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Background: Whilst assistive technology (AT) can play an important role to improve quality of life, health inequity regarding access to appropriate AT for people with intellectual disabilities (ID) is still very much present especially in low resource countries.

 

Objectives: This study focused on exploring factors that influence access to and continued use of AT by people with ID in the Western Cape province of South Africa and to suggest potential implications of these findings and actions required to promote access to AT.

 

Method: A qualitative approach was used to explore the experiences of people with ID and providers of AT. Face-to-face interviews with 20 adults with mild to profound ID, and 17 providers of AT were conducted and the data were analysed thematically.

 

Results: People with ID within the study setting faced many challenges when trying to access AT and for those who managed to acquire AT, its continued usage was influenced by both personal characteristics of the user and environmental factors. Important factors that influence AT access and use for people with ID found in this study were (1) attitudes from the community, (2) knowledge and awareness to identify AT need and (3) AT training and instructions to support the user and care network.

 

Conclusion: With the perspectives of both the providers and users of AT, this study identified priority factors, which could be addressed to improve AT access and use for people with ID in the Western Cape province.

What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families

CITHAMBARM, Kumaresan
DUFFY, Mel
COURTNEY, Eileen
2021

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Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.


Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.


Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.


Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

The Journal of Mental Health Training, Education and Practice, vol.12, no.4 Special Issue - Mental health pathways for people with intellectual disabilities: the education, training and practice implications

CHARNOCK, David
WRIGHT, Nicola
Eds
November 2017

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"This special edition aims to address some of the complexities and challenges faced in mainstream mental health services in three ways. First, to highlight the specific needs of people with intellectual disabilities and mental health problems. Second, to promote the importance of interdisciplinary working and learning in relation to mental wellbeing and intellectual disability, showcasing innovative approaches to care and finally, to offer a voice to specialists from intellectual disability practice and research to foster practical and conceptual thinking in relation to this group of service users"

There is a freely accessible editorial and there are six papers:

  • People with intellectual disabilities accessing mainstream mental health services: some facts, features and professional considerations
  • Psychiatry and intellectual disabilities: navigating complexity and context
  • Development and dissemination of a core competency framework
  • Mental health staff views on improving burnout and mental toughness
  • Using wordless books to support clinical consultations
  • Actors with intellectual disabilities in mental health simulation training

Full articles are not free.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

QualityRights materials for training, guidance and transformation

WHO
2017

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"As part of the QualityRights Initiative, WHO has developed a comprehensive package of training and guidance modules. The modules can be used to build capacity among mental health practitioners, people with psychosocial, intellectual and cognitive disabilities, people using mental health services, families, care partners and other supporters, NGOs, DPOs and others on how to implement a human rights and recovery approach in the area of mental health in line with the UN Convention on the Rights of Persons with Disabilities and other international human rights standards".

The medical inadmissibility of intellectual disability: A postcolonial reading of Canadian immigration systems

SPAGNUOLO, Natalie
2016

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This article builds upon existing critiques of Canada’s immigration system by focusing on the medical inadmissibility of young people labelled with intellectual disabilities. In considering how the Canadian state regulates applications for permanent residency, it explores discourses and practices of citizenship which invoke mutually-constituting identity markers such as disability and race. A close reading of case studies involving family applicants, demonstrates how immigration policies and legal systems frame the needs of young people labelled with intellectual or ‘profound’ disabilities as a burden to Canadian society. Individuals who were initially denied admission to Canada due to their diagnostic label, experience disability-related discrimination in different ways depending on the role of their perceived racial, gender, and class identities, among others. The individuals considered in this study navigate intersectional identities and ableist legal systems in their efforts to resist discrimination and win a review of their residency applications. This analysis will show that applicants are forced to work through the logic of medical assessment processes to favourably position their children within impairment hierarchies which rank intellectual disability as ‘too disabled’ to be admissible.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

Torture in healthcare settings : reflections on the Special Rapporteur on torture's 2013 thematic report

ANTI-TORTURE INITIAITIVE
February 2014

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This resource is a collection of articles focused upon the treatment of people with psycho-social disabilities in health-care settings, particularly with regard to torture, abuse and ill-treatment, and reflecting on the Special Rapporteur on Torture’s 2013 thematic report.

It brings together contributions by more than thirty international experts in response to the United Nations Special Rapporteur on Torture Juan E. Méndez’s thematic report, providing insights into essential topics and highlighting issues at the forefront of the intersecting medical, legal, and policy fields. It supports a commitment to tackling the challenges that continue to arise in promoting and protecting the human rights of persons in diverse healthcare settings globally

Differences in HIV knowledge and sexual practices of learners with intellectual disabilities and non-disabled learners in Nigeria

ADEEMI, Toyin
PILLAY, Basil
ESTERRHUIZEN, Tonya
February 2013

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"This study sought to compare the HIV knowledge and sexual practices of learners with mild/moderate intellectual disabilities and non-disabled learners (NDL) in Nigeria. Findings could help in the development of HIV interventions that are accessible to Nigerian learners with intellectual impairments"
Journal of the International AIDS Society, Vol 16

Mental health in post-crisis and development contexts

PÉGON, Guillaume
September 2012

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This brief provides an overview of Handicap International's activities in mental health in post-crisis and development contexts. Handicap International’s mental health projects specifically address the mental health of people with psychosocial and mental disabilities or with intellectual disabilities
PP brief No 3

The sexual heath needs of young people with learning disabilities

FRASER, Shirley
SIM, Judith
2007

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This briefing paper summarises the key findings from an evidence review on the sexual health and wellbeing of young people with learning disabilities. The review assimilates various forms of evidence, including the voices of young people themselves and emerging findings from practice. It also identifies a number of potential future actions that will help ensure that sexual health services and sex and relationships education are better able to meet the needs of young people with learning disabilities, as well as those of their parents and the professionals that support them

Developing an AIDS prevention education program for persons with developmental disabilities

JACOBS, Raymond
et al
1989

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The AIDS epidemic poses a serious threat to people with developmental disabilities, the magnitude of which has not yet been fully realised by many professionals working with this population. However, models for effective AIDS prevention education have been developed within other populations.The author discusses key principles utilised in existing models and presents recommendations on how to adapt these models when designing programmes for people who have developmental disabilities, most specifically, for those with mild to moderate range of mental retardation

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