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“They Stay until They Die” A lifetime of isolation and neglect in institutions for people with disabilities in Brazil

RIOS-ESPINOSA, Carlos
et al
May 2018

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This report documents a range of abuses against children and adults with disabilities in residential institutions in Brazil. The research is based on direct observations during visits to 19 institutions (known in Brazil as shelters and care homes), including 8 for children, as well as 5 inclusive residences for people with disabilities. In addition, Human Rights Watch researchers interviewed 171 people, including children with disabilities and their families, adults with disabilities in institutions, disability rights advocates, representatives of non–governmental organizations, including disabled persons organizations, staff in institutions, and government officials.

 

Research was carried out between November 2016 and March 2018 in the states of São Paulo (including São Paulo and Campinas), Rio de Janeiro (including Rio de Janeiro, Duque de Caxias, Niteroi and Nova Friburgo), Bahia (Salvador) and Distrito Federal (including Brasilia and Ceilândia).

Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

HULTMAN, Lill
FORINDER, Ulla
FUGL-MEYER, Kerstin
PERGERT, Pernilla
2018

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This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

Aligning with the flow of control: A grounded theory study of choice and autonomy in decision-making practices of people with intellectual disabilities

CAREY, Eileen
2018

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Purpose: Choice and autonomy are recognized as values facilitating genuine self- determination. Subsequently greater understanding of these concepts in decision-making practices of adults with intellectual disabilities is required.

 

Aims: The twofold aim of this research study was to ascertain the core concern (most important issue) for adults with intellectual disabilities as they make choices and exercise autonomy and to develop a theory explaining how these adults attempt to resolve their core concern.

 

Methods: This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. Interviews were undertaken, between January 2012 and September 2013, in different contexts on up to 4 occasions (46 interviews). Data analysis utilized concurrent processes of constant comparative analysis.

 

Results: The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations.

 

Conclusions: This theory offers a conceptual delineation of the way adults with intellectual disabilities manage the daily tensions and harmonies in decision-making.

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit

DESMOND, Deirdre
LAYTON, Natasha
BENTLEY, Jacob
BOOT, Fleur Heleen
BORG, Johan
DHUNGANA, Bishnu Maya
GALLAGHER, Pamela
GITLOW, Lynn
GOWRAN, Rosemary Joan
GROCE, Nora
MAVROU, Katerina
MACKEOGH, Trish
MCDONALD, Rachael
PETTERSSON, Cecilia
SCHERER, Marcia J
2018

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Assistive technology (AT) is a powerful enabler of participation. The World Health Organization’s Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a “state of the science” view of AT users, conceptualized as “People” within the set of GATE strategic “P”s. People are at the core of policy, products, personnel and provision. AT is an interface between the person and the life they would like to lead. People’s preferences, perspectives and goals are fundamental to defining and determining the success of AT. Maximizing the impact of AT in enabling participation requires an individualized and holistic understanding of the value and meaning of AT for the individual, taking a universal model perspective, focusing on the person, in context, and then considering the condition and/or the technology. This paper aims to situate and emphasize people at the centre of AT systems: we highlight personal meanings and perspectives on AT use and consider the role of advocacy, empowerment and co-design in developing and driving AT processes.

Invisible victims of sexual violence. Access to justice for women and girls with disabilities in India

HUMAN RIGHTS WATCH
April 2018

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This report is based on 17 cases of sexual violence against women and girls with disabilities in eight Indian states. It comes five years after The Criminal Law (Amendment) Act, 2013 (the 2013 amendments) were adopted in India. It follows Human Rights Watch’s November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, which found that rape survivors still face significant barriers obtaining justice and critical support services because legal and other reforms have not been fully realised.

This report finds that while the 2013 amendments have made significant progress in responding to the widespread challenges that victims of sexual violence endure, they have yet to properly develop and implement support for survivors with disabilities in the form of trainings and reforms throughout the criminal justice system. It highlights gaps in enforcement and calls for concrete measures to address the needs of women and girls with disabilities seeking justice for abuse. 

The case for investment in accessible and inclusive WASH

PRYOR, Wesley
et al
April 2018

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Using current evidence and testimony from more than 60 WASH experts in 30 countries, this technical paper highlights evidence to argue that accessible and inclusive WASH is achievable at low cost, by using universal design, community-driven change, and existing knowledge, expertise and methods. The paper provides starting points to understand the impact of and case for accessible and inclusive WASH.

Disability Equality: In Theory and Practice. Social Inclusion, volume 6, issue 1 (2018)

PRIESTLEY, Mark
WADDINGTON, Lisa
Eds
March 2018

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This special issue of this journal includes the following papers:

  • Achieving Disability Equality: Empowering Disabled People to Take the Lead
  • Dis-Equality: Exploring the Juxtaposition of Disability and Equality
  • Leveraging Employer Practices in Global Regulatory Frameworks to Improve Employment Outcomes for People with Disabilities
  • Equality of What? The Capability Approach and the Right to Education for Persons with Disabilities
  • Reasonable Accommodation as a Gateway to the Equal Enjoyment of Human Rights: From New York to Strasbourg
  • Disability, Access to Food and the UN CRPD: Navigating Discourses of Human Rights in the Netherlands
  • Rehabilitation as a Disability Equality Issue: A Conceptual Shift for Disability Studies?
  • Inclusions and Exclusions in Rural Tanzanian Primary Schools: Material Barriers, Teacher Agency and Disability Equality
  • Education, Work, and Motherhood in Low and Middle Income Countries: A Review of Equality Challenges and Opportunities for Women with Disabilities
  • Social Inclusion through Community Living: Current Situation, Advances and Gaps in Policy, Practice and Research


 

Tensions and unity in the struggle for citizenship: Swedish disability rights activists claim ‘Full Participation! Now!’

SÉPULCHRE, Marie
2018

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This article analyses the claims of contemporary disability rights activists mobilising in a context where de facto second- class citizenship co-exists with legal and political declarations about the rights of disabled people. As an empirical case, it focuses on the blog ‘Full Participation.Now’, which was initiated by disability rights activists in Sweden. Drawing upon citizenship research, the article points to the tensions and dilemmas featuring the bloggers’ demand for participation and equality, as well as the challenges relative to their struggle. Although the bloggers formulate contrasting arguments, the article highlights that the activists share a common aspiration for ‘full citizenship’.

Disability inclusive elections in Africa: a systematic review of published and unpublished literature

VIRENDRAKUMAR, Bhavisha
JOLLEY, Emma
BADU, Eric
SCHMIDT, Elena
2018

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The United Nations Convention on the Rights of Persons with Disabilities underscores the equal right of persons with disabilities to participate in political life. However, in Africa they are often unable to exercise their right to vote. This study sought to systematically review available evidence on inclusive elections in Africa. Findings showed that although most African countries ratified disability-focused legislation and proclaimed equal opportunities, the implementation of the legislation varies across the continent. Barriers to political participation can occur at any electoral stage and can be broadly categorised into three groups: lack of education and financial resources; stigma and negative social attitudes; and inaccessible physical infrastructure.

African Journal of Disability Vol 7 (2018)

2018

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This journal provides

  • Nineteen original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors, disability policy, learning for deaf learners, aquatic based interventions for children with cerebral palsy, evaluation of community based rehabilitation programmes, the impact of stroke and barriers to the implementation of inclusive education.
  • Seven review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities; The relationship between social support and participation in stroke: A systematic review; Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy; Implementation of the 2006 Convention on the Rights of Persons with Disabilities in Zimbabwe: A review; Part 1: A review of using photovoice as a disability research method: Implications for eliciting the experiences of persons with disabilities on the Community Based Rehabilitation programme in Namibia
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

Studying in UK as a disabled student

2018

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A brief introduction is provided about being a person with disabilities and a student in the UK. Information is given on rights, University’s office for disabled students, adjustments and scholarships and loans.

Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter

SOLDATIC, Karen
MELBOE, Line
KERMIT, Patrick
SOMERS, Kelly
2018

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Globally, Indigenous people, also known as First Peoples, have the poorest health outcomes of all population groups, resulting in significantly higher rates of chronic disease, ill-health, and disability. Recent research strongly suggests that Australian First Peoples and the Sami peoples of the Nordic region are positioned at opposite ends of the disability–health spectrum. Australia’s First Peoples, now experience the highest rates of disability in the nation’s recorded history, despite the significant government investment over recent decades in national Indigenous policy. Yet, Nordic Indigenous populations appear to have similar health outcomes and living conditions as the rest of the population in the region. In this paper, we compare some of the global assumptions of the two leading countries of the United Nations Human Development Index– Norway (ranked first) and Australia (ranked second)– and examine the ways in which such rankings act to hide the disparities of life trajectories and outcomes for Indigenous persons living with disability compared to the rest of the population in each country. The findings of the comparative analysis illustrate core areas for consideration when undertaking in-depth comparative research with First Nation’s peoples. This includes issues surrounding the differentiated political significance of national population data systems for local Indigenous peoples in their struggles for recognition, and the nuanced processes of population data categorisation that are developed as a result of First Nation’s localised struggles for recognition, respect and rights under processes of European colonisation.

 

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

Good practices for the implementation of the CRPD in Indonesia (2015-2017) - Making it Work

HANDICAP INTERNATIONAL
WIDJAYA, Hartaning
2018

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In Indonesia, the Advocacy for Change project aimed to increase the effective participation of people with disabilities in inclusive development efforts at the local level, and promote their participation in development at the national level. Specifically, the Advocacy for Change project sought to improve and monitor the people with disabilities' access to local government processes and existing social services.

Six case studies are presented:

  • Community Based Forum as Community Public Space (The culture is the key)
  • Building the Foundation of Inclusion with Sendangadi Village Government
  • WKCP (Cerebral Palsy Family Association) Health Initiative for Health Budgeting Advocacy
  • Citizen Based Forum as a Common Space to Encourage the Government to Build a Disability-Friendly Village in Mata Air Village, Kupang Tengah Sub- district, Kupang District
  • Inclusion of Disabled Persons in Noelbaki Village Women's Forum 
  • The role of disabled people organization in participation of development with Bappeda Kupang Municipality

 

Report of the informal consultation on stopping discrimination and promotion inclusion of persons affected by Leprosy. New Delhi, 14–16 Nov 2017

COOREMAN, Erwin
WHO SEARO/Department of Control of Neglected Tropical Diseases
et al
2018

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An Informal Consultation on Stopping Discrimination and Promoting Inclusion of Persons Affected by Leprosy was held in New Delhi from 14 to 16 November 2017. Forty delegates with diverse backgrounds, experience and expertise enriched the discussions. Persons affected by leprosy brought to the table the challenges faced in daily life and suggested actions to be taken to reduce stigma and discrimination related to leprosy. Representatives of national programmes presented actions taken in their respective countries. The participants acknowledged the fact that stigma and discrimination related to leprosy still exists at a significant level. Information about stigma and discrimination related to leprosy needs to be collected in a more systematic manner to assess the magnitude of the problem and to further plan activities to reduce it.

Key recommendations from the consultation included counselling and reporting of incidences of discrimination. Efforts should be continued to inform facts about leprosy to the community.

The participants strongly recommended that leprosy programmes should adopt a ‘rights-based approach’ in line with the Sustainable Development Goals.

Defying the barriers

KHONDKAR, Laila
HAQUE, Reazul Md
January 2018

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Research summaries, case studies and process documentation from “Inclusive Protection and Empowerment Project for Children with Disabilities (IPEP)” are presented.  The aim of the project was to build resilience and capacity among children with disabilities and to create a violence-free community for them. The project ran in five districts of Bangladesh i.e. Sylhet, Dhaka, Barishal, Rangpur and Gaibandha from 2014- 2017. 

 

The research topics were:

  • Understanding the Vulnerabilities of Children with Disabilities Living in both Government-run and Private Residential Institutions
  • The Vulnerabilities of Children with Disabilities from Low-income Households
  • Social Protection Schemes Relevant to Children with Disabilities and their Families 

 

Let me decide and thrive - Global discrimination and exclusion of girls and young women with disabilities

PLAN INTERNATIONAL
December 2017

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Girls and young women with disabilities have the right to make decisions over their own bodies and live free from violence and fear. Yet, on a global level, they are the people least likely to enjoy their sexual and reproductive health and rights (SRHR). Compelled by this reality, Plan International and the Office of the UN Special Rapporteur on the Rights of Persons with Disabilities have joined forces to ensure young women and girls with disabilities can exercise choice and have control over their bodies. The Let Me Decide and Thrive initiative is supported by in-depth, critical field and desk research and aims to empower girls and young women with disabilities, raise awareness of their plight among stakeholders, and work to secure their sexual and reproductive health and rights.

This research found that the barriers to SRHR confronted by girls and young women with disabilities are overwhelming: infantilisation and disempowerment; forced sterilisation, abortion, and contraception; disproportionate suffering from all forms of violence; substantial barriers in accessing justice; discriminatory attitudes, norms, and behaviours rendering them invisible; and a lack of accessible and appropriate SRHR information and services.

How law protects persons with disabilities in armed conflict

INTERNATIONAL COMMITTEE OF THE RED CROSS (ICRC)
December 2017

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This paper identifies commonalities between international humanitarian law (IHL) and the Convention on the Rights of Persons with Disabilities (CRPD) and emphasizes certain specific contributions of IHL to the protection of persons with disabilities in armed conflict.

It is hoped that this legal analysis will contribute to current efforts by the ICRC and the International Red Cross and Red Crescent Movement, as well as other actors, to operationalise better inclusion and participation of persons with disabilities in carrying out humanitarian activities in armed conflict

Sexual assault advice - Booklet for Kenya

ALEY, Rob Aley - Advantage Africa
et al
November 2017

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This simple guide has been written to support victims of
sexual abuse and their families in Kenya to know their rights and
to understand what services are available to them. The
booklet is also a useful source of summary information for
duty bearers in the community (e.g. village elders, faith
groups, Assistant Chiefs and CBOs) as well as formal
service providers such as hospitals and the police.

Pages

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