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Insisting on inclusion: Institutionalisation and barriers to education for children with disabilities in Kyrgyzstan

MILLS, Laura
December 2020

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Since 2012, the Kyrgyz government has pledged to close 17 residential institutions for children, including three for children with disabilities. But 3,000 children with disabilities remain in institutions.

This report is based on in-person visits to six institutions for children with disabilities and 111 interviews with children with disabilities, their parents, institution staff, and experts in four regions of Kyrgyzstan. It describes abuses in state care as well as barriers to education that often lead to a child’s segregation in a residential institution or special school, or their isolation at home.

 

 

Disability Debrief: an international update on persons with disabilities in the COVID-19 crisis

TORRES FREMLIN, Peter
September 2020

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This is an update on disability news around the world relating to the COVID-19 crisis, from late April to the end of September 2020. It's a snapshot of news, statistics, policy, and experiences of persons with disabilities around the world. Links are prvided to the original resources.

 

Topics covered include:

  • What has happended so far: Data on COVID-19 and mortality; Care homes and institutional settings; Impact on persons with disabilities; Gathering data and the gaps; Experiences of Persons with Disabilities
  • Disability in response; International response: Collections of resources; Country and Regional Approaches; Resources by disability
  • Inclusion in protection and interim measures; Masks / face coverings; Physical distancing and isolation; Lockdown and confinement; Institutions and long-term care facilities; Coming out of lockdown; Social protection and services
  • Health, treatment and recovery
  • Across society and sectors: Care; Culture and sport; Digital accessibility and inclusion; Education and young people; Elections and politics; Humanitarian and Refugees; International cooperation; Justice; Mental Health; Transportation and travel; Violence; Water, Sanitation and Hygiene (WASH); Work and skills
  • Rebuilding / what happens next; New perspectives and recovery; Social protection; Work and employment

 

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

SANDS, Therese
July 2020

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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

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

The concept of welfare technology in Swedish municipal eldercare

FRENNERT, Susanne
BAUDIN, Katarina
September 2019

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Purpose: An ageing population presents a challenge for municipal eldercare in Sweden due to difficulties recruiting staff and there being a strained economy. A strategy involving welfare technology is presented as one such solution. An important group to carry out this strategy involves those who work with welfare technology in municipal eldercare. In this paper we describe their perception of welfare technology, and the challenges and opportunities they perceive in utilizing it.

 

Methods: A self-administered online questionnaire was distributed to all Swedish municipalities and answered by 393 respondents. Analyses show that the respondents were representative of the different professions who work with welfare technology within municipal eldercare.

 

Results: Welfare technology was perceived as being more reliable and safer than humans with regards to supervisions and reminders. The respondents acknowledged factors that slowed down the implementation of welfare technology in municipal eldercare organizations, such as resistance to change, lack of finances, lack of supporting evidence, lack of infrastructure, high staff turnover, difficulties with procurement and uncertainties about responsibility and laws.

 

Conclusions: We found that the people who work with and make decisions about welfare technology in municipal eldercare organizations were generally very positive about the deployment and use of such technology, but there appear to be problems within municipal eldercare organizations to realize this vision. The lack of structured implementation processes and coherent evaluation models indicates inequality of the access to welfare technology and, as a result, even though Swedish eldercare is publicly funded, the availability of welfare technologies and their usage differ between municipalities.

Associations between occupational and social interaction factors and well-being among people with psychiatric disabilities living in supported housing in Sweden

EKLUND, Mona
TJÖRNSTRAND, Carina
2019

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Research indicates that occupation is important for well-being in people with mental illness, but this has not been extensively studied among those with severe psychiatric disabilities. Social contacts may possibly play a more vital role for them. This study aimed to explore how aspects of occupation and social interaction were related with well-being factors in that group, while controlling for the influence of clinical factors. People with psychiatric disabilities living in congregate supported housing (CSH; N = 155) responded to questionnaires addressing occupation, social contacts and well-being aspects, such as subjective health, quality of life, self-mastery, and personal recovery. A comparison group with psychiatric disabilities who lived in an ordinary flat or house and received outreach housing support (N=111) completed the same instruments. The two groups were compared regarding their pattern of associations between occupation, social contacts, and well-being. Associations between occupation and well-being in the CSH group showed that general satisfaction with everyday occupations in particular was related to all aspects of well-being, whereas activity level and occupational balance were not related to well-being. The relationships were fewer and weaker, in comparison to the group in ordinary housing with outreach support. Indicators of social contacts were basically unrelated to well-being. The study contributes to occupational science by showing that the role of a high activity level for well-being, although important, should not be overemphasized. Future research should focus on narratives to get the voices of people residing in CSH and on exploration of how individually/socially performed occupations are associated with well-being.

“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).

‘It’s my home and your work’: the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities

HELLZEN, Ove
HAUGENES, Marit
ØSTBY, May
2018

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Purpose: Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user’s perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation.

 

Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabil- ities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used.

 

Results: The analysis reveals three themes: “being emotionally touched”, “being aware of the other”, and “being unclear”.

 

Conclusions: The results are discussed in light of normalization and participation in society with independence and one’s own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.

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.

“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

Independence, choice and control : DLA and personal mobility in state-funded residential care|Volume 1 : report

THE LOW REVIEW
2011

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This report focuses upon: how the mobility component of DLA is being used by care home residents and the impact of the loss of this benefit; funding arrangements for meeting personal mobility needs between local authorities and care home providers; and responsibilities of care home providers in relation to the mobility needs of residents. Over 800 submissions from individuals, local authorities and providers were provided , and six oral evidence sessions were held for the compilation of this report
The executive summary and report are available in both word and pdf formats
Oral and written evidence is contained in volume 2 available on the website

Home truths : the phenomenon of residential care for children in a time of AIDS

MEINTJES, Helen
et al
June 2007

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The main sections fo this report describe how the international child welfare sector and the South African government define and conceptualise the role of residential care in the context of the HIV epidemic; analyse the basic characteristics of children found to be resident in the range of settings identified; and provide a detailed exploration of different aspects of residential care settings in the study sites. The primary conclusions drawn from the findings are grouped into six areas: children in residential care; knowledge and practice regarding HIV and AIDS; policy discourse; complexity of residential care provision 'on the ground'; registration; and the interface between legislation, government practice and residential care provision

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