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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).

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 

 

The right to live independently and be included in the community : Addressing barriers to independent living across the globe

ANGELOVNA-MLADENOVA, Lilia
June 2017

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"This reports looks at the main barriers to the realisation of disabled people’s right to live independently and be included in the community, which is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). They are grouped in seven broad areas: (1) misunderstanding and misuse of key terms, (2) negative attitudes and stigma, (3) lack of support for families, (4) prevalence of institutional services, (5) barriers related to community support services, (6) barriers in mainstream services and facilities, and (7) barriers, concerning other CRPD provisions, with effect on Article 19. A set of recommendations is also provided, outlining measures required to address these barriers"

“When will I get to go home?” Abuses and discrimination against children in institutions and lack of access to quality inclusive education in Armenia

BUCHANAN, Jane
February 2017

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This report documents how thousands of children in Armenia live in orphanages, residential special schools for children with disabilities, and other institutions. The report is based on Human Rights Watch visits to five state-run orphanages and ten state-run schools, including six special schools and four mainstream schools, and interviews with 173 people, in eight cities in Armenia. They interviewed 47 children and young adults, and 63 families of children living in orphanages, attending special schools or attending mainstream schools. They also interviewed directors of orphanages, special schools, and mainstream schools, as well as social workers, doctors, teachers, psychologists, caregivers, and other staff in institutions

Topics include: overview of residential institutions in Armenia; institutionalization of children and young adults and discrimination in the deinstitutionalization process; problems for children and young adults in residential institutions; lives transformed; national and international legal obligations; failure to guarantee quality education to children with disabilities; other forms of education for children with disabilities; government and donors’ response; recommendations

Equal basis 2014 : access and rights in 33 countries

BURKE, Megan
PERSI VICENTIC, Loren
December 2014

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This report presents research about efforts to meet the needs and uphold the rights of persons with disabilities in four thematic areas: health care, rehabilitation, work and employment, and accessibility and enabling environments. Research findings are drawn from the experiences of landmine and cluster munition survivors and other persons with similar needs in 33 countries experiencing armed conflict or emerging from armed conflict or political or economic transition. Findings are placed within the context of relevant articles of the Convention on the Rights of Persons with Disabilities and the World Report on Disability

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India

SHARMA, Kriti
December 2014

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This in-depth, illustrated report on the abuses of female patients with psychosocial or intellectual disabilities at institutions in India found that patients experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Easy-to-read version, summary and video also available

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India : summary and key recommendations

HUMAN RIGHTS WATCH (HRW)
December 2014

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This illustrated summary presents the key findings and recommendations of the full report which found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Full report, summary report and video also available

Women and girls with a disability in India

HUMAN RIGHTS WATCH (HRW)
December 2014

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This easy-to-read summary uses simple language and clear illustrations to succinctly present the key principles of the full report: “Treated worse than animals: abuses against women and girls with psychosocial or intellectual disabilities in institutions in India”. The report found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights

 

Note: Full report, summary and video also available

HRW says disabled children in Russia face violence, isolation, neglect

PODELCO, Grant
September 2014

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This article reports on the Human Rights Watch (HRW) report which documents how children with disabilities in Russian orphanages face abuse, neglect and isolation.  The report found that nearly 30 percent of all Russian children with disabilities are removed from their parents and live in state orphanages, where they face neglect and sometimes violence. The report recommendations push for the government and other actors to protect children in institutions from abuse and neglect, better support families raising children with disabilities, and move toward ending institutionalisation of children with disabilities. This article presents seven photo slides, a case study, the key findings and recommendations of the report, an interview with the author and a link to the related HRW video

Abandoned by the state : violence, neglect, and isolation for children with disabilities in Russian orphanages

MAZZARINO, Andrea
September 2014

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This report presents the situation of violence, neglect, and isolation for children with disabilities in Russian orphanages.  The report is based on visits by Human Rights Watch researchers to 10 orphanages in 6 regions of Russia, as well as on more than 200 interviews with parents, children, and young people currently and formerly living in institutions in these regions in addition to 2 other regions of Russia. It finds that many children and young people with disabilities who have lived in state orphanages suffered serious abuse and neglect on the part of institution staff that impedes their development. The report presents the background of the current situation and its detailed findings. and makes recommendations to key Russian stakeholders to ensure protection of the rights of children with disabilities in Russia and to comply with its international human rights obligations

Note: Easy read version is available from the web link

Common European guidelines on the transition from institutional to community based care|Guidance on implementing and supporting a sustained transition from institutional care to family-based and community-based alternatives for children, persons with dis

THE EUROPEAN EXPERT GROUP ON THE TRANSITION FROM INSTITUTIONAL TO COMMUNITY BASED CARE (EEG)
November 2012

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These guidelines "provide practical advice about how to make a sustained transition from institutional care to family-based and community based alternatives for individuals currently living in institutions and those living in the community, often without adequate support. The Guidelines are aimed primarily at policy and decision makers in the European Union and the neighbouring countries with responsibility for the provision of care and support services for children, people with disabilities and their families, people with mental health problems and older people"

Toolkit on the use of European Union funds for the transition from institutional to community based care

THE EUROPEAN EXPERT GROUP ON THE TRANSITION FROM INSTITUTIONAL TO COMMUNITY BASED CARE (EEG)
November 2012

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This toolkit "aims to explain how European Union funds can support national, regional and local authorities in designing and implementing structural reforms aimed at facilitating the development of quality family-based and community-based alternatives to institutional care. It addresses primarily the desk officers of the European Commission, managing authorities, intermediate bodies, monitoring committees and project promoters in the EU Member States and in acceding, candidate and potential candidate countries; and any other donors investing in services for children, people with disabilities, people with mental health problems or older people"

Mapping exclusion

KOZMA, Agnes
PETRI, Gabor
November 2012

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This is a comprehensive report on the state of deinstitutionalization from institution-based services towards community-based services in the mental health field in Europe. The report consists of a comparative analysis of trends and policy changes in Europe based on a survey, and 32 country reports are presented in the annex covering issues crucial in the context of community care, such as data about institutional and community-based services, national mental health and deinstitutionalization strategies, information on guardianship and involuntary admission policies
Note: The report is in English, summaries are available in Dutch, French, Hungarian, Polish, Spanish, Romanian and Swedish

Getting a life : living independently and being included in the community

QUINN, Gerrard
DOYLE, Suzanne
April 2012

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“The purpose of this Study is to explore and set out the minimum conditions necessary to achieve the positive potential of the European Union Structural Funds in enabling Member States and the European Union to implement the UN Convention on the Rights of Persons with Disabilities, particularly the right to live independently and be included in the community. Not only is this a key right in the Convention but it is also an area where the Structural Funds can generate clear added value.”  This report will be useful to anyone working particularly on social inclusion issues in eastern Europe

Forgotten Europeans forgotten rights : the human rights of persons placed in institutions

PARKER, Camilla
et al
2012

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This report is the first of a series of OHCHR publications intended to inform and encourage debate on the issues affecting children, persons with disabilities and older persons in institutions. The study highlights that many children and people with disabilities and older persons continue to be placed in long-stay residential institutional care in countries across Europe, often for life. The report draws attention to this situation and addresses the responsibility of governments to develop community-based alternatives to institutional care. It identifies the issues covered by the relevant existing standards and highlights areas that require further consideration and discussion

Forgotten Europeans

OFFICE OF THE HIGH COMMISSIONER FOR HUMAN RIGHTS (OHCHR), Regional Office for Europe
UNITED NATIONS CHILDREN'S FUND (UNICEF)
January 2012

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This video highlights that many children and people with disabilities and older persons continue to be placed in long-stay residential institutional care in countries across Europe, often for life. The video features the experiences of Mikhail in Moldova and Assen in Bulgaria who both grew up in institutional care

Personal assistance and independent living : article 19 of the UN convention on the rights of persons with disabilities

JOLLIE, Debbie
December 2009

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This paper “reviews personal assistance and independent living within the framework of article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). It concentrates on the issues of independent living and personal assistance...and considers the misconceptions and misunderstandings of the terms 'independent living' and 'personal assistance', as well as the history of independent living movement.”  This short document will be particularly useful to anyone interested in independent living and Article 19 of the CRPD

Torment not treatment : Serbia's segregation and abuse of children and adults with disability

AHERN, Laurie
ROSENTHAL, Eric
BAUER, Elizabeth
Eds
November 2007

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This report exposes human rights abuses in Serbia. It contains images that portray the extent of human rights violations against disabled children and adults in health care centres and institutions. The report aims to raise awareness, promote advocacy and foster legislation to protect disabled peoples' rights. It useful to anyone with an interest in human rights violations, and disability and development generally

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