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Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

Background: Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.Object

KUMI-KYEREME, Akwasi
2021

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Background:Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.


Objective:This study investigated utilisation of SRHS amongst the in-school young people with disabilities (YPWDs) in Ghana using the healthcare utilisation model.


Methods: Guided by the cross-sectional study design, a questionnaire was used to obtain data from 2114 blind and deaf pupils or students in the age group 10-24 years, sampled from 15 purposively selected special schools for the deaf and the blind in Ghana.


Results: About seven out of every 10 respondents had ever utilised SRHS. The proportion was higher amongst the males (67.8%) compared with the females (62.8%). Young persons with disabilities in the coastal (OR = 0.03, 95% CI = 0.01–0.22) and middle (OR = 0.06, 95% CI = 0.01–0.44) zones were less likely to have ever utilised SRHS compared with those in the northern ecological zone. The blind pupils or students were more likely to have ever utilised SRHS than the deaf (OR = 1.45, 95% CI = 1.26–3.11).


Conclusions: Generally, SRHS utilisation amongst the in-school YPWDs in Ghana is high but significantly associated with some predisposing, need and enabling or disabling factors. This underscores the need for policymakers to consider in-school YPWDs as a heterogeneous group in the design and implementation of SRHS programmes. The Ghana Education Service in collaboration with the Ghana Health Service should adopt appropriate pragmatic measures and targeted interventions in the special schools to address the SRH needs of the pupils or students.

The community-based actions that removed barriers to inclusive education in Kenya

ELDER, Brent C
PAYNE, Mbuh
OSWAGO, Benson
2021

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This article represents a culmination of inclusive education projects implemented in western Kenya since 2010. In this article, we discuss the 2018 iteration of this on-going community-based participatory research (CBPR)-informed project in which we utilised multiple theoretical frameworks to inform our methods in this project, including decolonising methodologies and Critical Disability Studies (CDS). We conducted qualitative interviews as a way to learn about the ways in which inclusion committees facilitated the partial removal of barriers to the development of an inclusive education system in the region over the last decade. In this article, we provide an overview of the barriers to inclusive education in the global South and sub-Saharan Africa, with a particular focus on western Kenya. We present findings that highlight the various inclusion committee actions that contributed to the partial removal of barriers which included: sensitising communities about inclusive education; promoting access to inclusive education; and implementing inclusive strategies like income generating activities (IGAs) and co-teaching. We conclude the article by suggesting potential ways forward for inclusive education in Kenya including: a multi-sector approach for family supports; providing government incentives to inclusive schools; and promoting IGAs and co-teaching practices in teacher education programs and in schools.

Disability Royal Commission: WWDA’s response to education and learning issues paper

SANDS, Therese
April 2020

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In 2019 the Disability Royal Commission released an issues paper on education and learning. The issues paper asked 13 questions based on some of the key issues and barriers experienced by students with disability.

Women With Disabilities Australia (WWDA) have now submitted their response to the issues paper which highlights key recommendations to improve the lives and experiences of students with disability. The recommendations stem from the following key areas:

  • Inclusive education
  • Intersectionality
  • Inequality and discrimination underpin violence
  • Restrictive practices – torture and ill-treatment
  • Exposing violence – desegregated data and intersectionality
  • Building strengths through inclusive education

Advancing equality - How constitutional rights can make a difference worldwide

HEYMANN, Jody
SPRAGUE, Aleta
RAUB, Amy
2020

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Combining a comparative analysis of equal rights in the constitutions of all 193 countries with inspiring stories of activism and powerful court cases from around the globe, the book traces the trends in constitution drafting over the past half century, and examines how stronger protections against discrimination have transformed lives. Looking at equal rights across gender, race and ethnicity, religion, sexual orientation and gender identity, disability, social class, and migration status, the authors uncover which groups are increasingly guaranteed equal rights in constitutions, whether these rights on paper have been translated into practice, and which nations and protections from discrimination lag behind

Amplifying the voices of women and girls with disabilities in Zimbabwe

UNESCO OFFICE HARARE
LEONARD CHESHIRE DISABILITY (ZIMBABWE)
AFRICA COMMUNITY RESEARCH AND DEVELOPMENT CENTRE
2020

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This qualitative study on the aspirations, needs and concerns of women and girls with disabilities in Zimbabwe seeks to contribute to the growing knowledge on women and girls with disabilities globally, as well as to contribute to the ongoing dialogue on advancing the implementation of the CPRD in Zimbabwe

 

The specific aims were to:

  • Assess the demographic and socioeconomic characteristics of women and girls with disabilities
  • Identify the aspirations of women and girls with disabilities from marginalized areas
  • Describe the needs and concerns of women and girls with disabilities for equitable participation in public life
  • Assess how current development interventions are responding to the needs of women and girls with disabilities, specifically SRH and GBV services delivery
  • Hear from women and girls with disabilities on practical recommendations for the advancement of disability rights and improving justice, SRH and GBV service delivery that meets their needs

 

The approach and methodology were designed with a view to gathering first-hand information and verbatim from an estimated 261 women and girls with disabilities, and from other stakeholders interviewed in marginalized areas, namely caregivers, OPDs, NGOs, traditional leaders, community cadres, and government officials. The study design was also guided by a range of participatory approaches that enabled women with diverse disability types to effectively participate in the qualitative study.

Instating settings of emergency education in Vienna: temporary schooling of pupils with forced migration backgrounds

PROYER, Michelle
BIEWER, Gottfried
KREUTER, Linda
WEIß, Jekaterina
2019

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In the year 2015, Austria was one of the main European destinations of displaced persons. According to education authoritiesaround 15,000 children with a forced migration background of school age who arrived in Austria over the course of a few months from late2015 to the beginning of 2016 called for immediate and partly temporary solutions. Due to Austrian legislation and unlike other countries,every child living in Austria between the ages of six to fifteen (or for nine years of schooling) is entitled to receive compulsory education. Though the school administration of Vienna generally promotes an inclusive approach to education in regular schools, schools inneighbourhoods with a large refugee population were reportedly unable to provide appropriate and adequate education for all children. Inresponse, the local school authority in Vienna decided to establish temporary classrooms in refugee accommodations. This article describesand analyses the emergence of new educational structures from the point of view of university students and lecturers who took part in theone and a half years of its implementation. The article thereby aims to document specific perspectives on educational emergency measuresat a certain point of time. In both the primary and secondary sectors, the emergence of a new temporary field of specialised and exceptional education were observed and recorded in a thick description of dynamic processes of trans-institutional, trans-organisational, transprofessional, communal, and individual development. Thus, the article presents a multifaceted picture of problems in refugee education under exceptional circumstances. The findings illustrate how insufficient educational opportunities for those falling outside the age of compulsory schooling – in particular, preschool children as well as youth older than fifteen – diminish possibilities for the inclusion of these children within and beyond education.

The regressive power of labels of vulnerability affecting disabled asylum seekers in the UK

YEO, Rebecca
2019

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There has been some progress in the United Kingdom regarding official recognition of the existence and needs of disabled asylum seekers and refugees. However, references are commonly accompanied by euphemistic labels, particularly of ‘vulnerability’. This should be understood in the context of systematic reduction of services and support available to the wider population of asylum seekers and disabled people in the United Kingdom. I argue that these processes reinforce each other and that both undermine a rights-based approach. Focusing on recent asylum and immigration policies, I explore how labels of ‘vulnerability’ obscure systemic oppression and distract from the rights and achievements of disabled people. The regressive elements of vulnerability discourse are presented as if better than nothing. Such discourse risks reinforcing hegemonic acceptance of distinctions of human worth, with detrimental impact for migrants and citizens alike.

Exposing the protected: Ghana’s disability laws and the rights of disabled people

OCRAN, Joseph
March 2019

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This paper discusses the position that disabled people in Ghana continue to experience various forms of discrimination and social exclusion despite the fact that there are several anti-discriminatory laws that are meant to protect the rights of disabled people and facilitate their participation in mainstream social, political and economic activities

 

DISABILITY & SOCIETY 2019, VOL. 34, NO. 4, 663-668

https://doi.org/10.1080/09687599.2018.1556491

A Document Review of Exclusionary Practices in the Context of Australian School Education Policy

IACONO,Teresa
KEEFFE, Mary
KENNY, Amanda
MCKINSTRY, Carol
2019

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Internationally, there is a commitment to inclusive education for students with disability. In Australia, equality of access to mainstream schools is a key policy feature, with educational exclusion of children with disability being unlawful. In this review, the aim was to identify and analyze contemporary documents that point to failures in inclusive policy and legislation in Australia and the state of Victoria by demonstrating educational exclusion of school students with disability. A search of the gray literature was conducted to identify relevant documents from 2010 to 2017. Reference lists of retrieved documents were also searched for other sources. The review included 23 documents and findings demonstrated that the needs of children and families are often not met, with a disconnection evident between inclusive educational policy, legislation, and practices that exclude children with disability from mainstream education. Restrictive practices and gatekeeping act to dissuade families from enrolling children in mainstream education, with many seeking enrolment in special schools. However, concerns with special school practices, such as the use of restrictive interventions have been documented. Parents have resorted to homeschooling, with associated emotional and economic consequences. Tensions between schools and parents were evident, with parents not always having the opportunity to be fully involved in decision-making processes and planning. The key finding of this review was a clear gap between policy and legislative intentions and practices in schools. Lack of clarity on reasonable adjustments and an underpinning research evidence base to policy results in schools being left to develop their own practices. Strong leadership is needed from principals, and a whole of school commitment, to traverse policy practice gaps that continue to impact on the ability of children with disability to be well-supported in accessing mainstream schools.

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.

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.

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.

Normality and disability: intersections among norms, law, and culture

GOGGIN, Gerald
STEELE, Linda
CADWALLADER, Jessica
April 2017

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The central aim of this anthology of papers is to consider the place of law in political, social, scientific and biomedical developments relating to disability and other categories of ‘abnormality’. The papers consider how categories of abnormality relate to the privileged and frequently unmarked position of ‘normality’ and how legal interventions in abnormality relate to existing normative designations in the dominant cultural imaginary. This collection of papers has a range of disciplinary approaches

Paper titles:

  • Fit or fitting in: deciding against normal when reproducing the future
  • Eccentricity: the case for undermining legal categories of disability and normalcy
  • Eugenics and the normal body: the role of visual images and intelligence testing in framing the treatment of people with disabilities in the early twentieth century
  • The construction of access: the eugenic precedent of the Americans with Disabilities Act
  • Disability and torture: exception, epistemology and ‘black sites’
  • Mental capacity and states of exception: revisiting disability law with Giorgio Agamben
  • Not just language: an analysis of discursive constructions of disability in sentencing remarks
  • Policing normalcy: sexual violence against women offenders with disability
  • ‘The government is the cause of the disease and we are stuck with the symptoms’: deinstitutionalisation, mental health advocacy and police shootings in 1990s Victoria
  • Disruptive, dangerous and disturbing: the ‘challenge’ of behaviour in the construction of normalcy and vulnerability
  • Making the abject: problem-solving courts, addiction, mental illness and impairment
  • Cripwashing: the abortion debates at the crossroads of gender and disability in the Spanish media
  • ‘Figurehead’ hate crime cases: developing a framework for understanding and exposing the ‘problem’ with ‘disability’

Continuum 

Journal of Media & Cultural Studies, Vol.31, No.3, pp. 337-340

http://dx.doi.org/10.1080/10304312.2017.1275077

Disability law and reasonable accommodation beyond employment. A legal analysis of the situation in EU Member States.

EUROPEAN COMMISSION
DIRECTOR-GENERAL FOR JUSTICE AND CONSUMERS
WADDINGTON, Lisa
BRODERICK, Andrea
POULOS, Anne
November 2016

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This report analyses the situation in the 28 EU Member States with regard to obligations to provide reasonable accommodation outside the field of employment. More specifically, the report outlines the duties contained in Member States’ laws and policies with respect to reasonable accommodation in the areas covered by the 2008 proposal of the European Commission for a directive to protect people from discrimination on the ground of disability, as well as discrimination on a number of other grounds (henceforth 2008 proposal). The 2008 proposal addresses the fields of social protection, including social security, healthcare and social housing; education; and access to, and supply of, goods and services, including housing. It seeks to prohibit six kinds of discrimination including, in the context of disability, an unjustified denial of a reasonable accommodation

DOI: 10.2838/15305

Toolkit on disability for Africa

UNITED NATIONS DEPARTMENT OF ECONOMIC AND SOCIAL AFFAIRS (UNDESA)
November 2016

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A Toolkit on Disability for Africa has been developed by the United Nations Department of Economic and Social Affairs (UNDESA), Division for Social Policy and Development (DSPD). It is designed for the African context and aims to:

  • Provide practical tools on various disability-related issues to government officials, members of parliament, civil and public servants at all levels, disabled persons organizations (DPOs) and all those with an interest in the inclusion of persons with disabilities in society and development;
  • Support the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and disability-inclusive development;
  • Offer examples of good practices from many countries in the African region.

 

Toolkit Modules:

  • UN DESA toolkit on CRPD – Trainers’ tips
  • Introducing the UNCRPD
  • Frameworks for implementing and monitoring the UNCRPD
  • Disability-inclusive development
  • Accessibility
  • Building multi-stakeholders partnerships for disability inclusion
  • National plans on disability
  • Legislating for disability rights
  • Access to justice for persons with disabilities
  • The rights of persons with disabilities to work
  • Inclusive health services for persons with disabilities
  • Participation in political and public life
  • Information and communication technology (ICT) and disability
  • Culture, beliefs, and disability
  • Inclusive education

The Employment Equality Directive - European implementation assessment

TYMOKSKI, Jan
February 2016

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"The adoption of the Employment Equality Directive in 2000 extended the protection against discrimination provided under EU law. By explicitly obliging the Member States to prohibit discrimination in employment on the grounds of religion or belief, age, disability and sexual orientation, the general principles set out in the Treaties became more effective, and some minimum standards are now common throughout Europe. At the same time, specific exceptions with regard to all or only some of those grounds permit the continuation of certain measures that were already in place in most countries, which has led to different national practices, especially with regard to age. Additional provisions on horizontal issues such as access to justice and sanctions, dissemination of information and necessary dialogue, left the details to be established by Member States according to their laws and customs. This analysis builds on the available documents and expertise in order to facilitate the debate on the implementation of the Employment Equality Directive to date and on how best to follow it up" 

DOI: 10.2861/178997

 

EU implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD)

ANGLMAYER, Irmgard
February 2016

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"This in-depth analysis, produced by the Ex-Post Impact Assessment Unit of the European Parliamentary Research Service (EPRS), looks into the state of play of the implementation by the European Union of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), after the first round of the review process. The Convention's overarching principles entail mainstreaming of disability rights across all policies and within all institutions. This paper analyses the institutional arrangements required to monitor the implementation process, and subsequently puts the recommendations of the CRPD Committee ('Concluding Observations') into a broader context, outlining the progress made so far and the challenges ahead"

DOI: 10.2861/831248

China’s Mental Health Law: Analysis of Core Concepts of Human Rights and Inclusion of Vulnerable Groups

Hussey, Meghan Marie
Mannan, Hasheem
2016

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Purpose: The aim of this research is to assess China’s first Mental Health Law in terms of Core Concepts of Human Rights and equitable coverage of Vulnerable Groups.

 

Methods: The EquiFrame analytical tool provided the framework for evaluation of the inclusion of Core Concepts of Human Rights as well as Vulnerable Groups in the Law.

 

Results: China’s Mental Health Law scored 83% for Core Concept coverage, with a Core Concept Quality score of 76%. The Law had a 42% score for Vulnerable Groups coverage. This gave the Law an overall score of “Moderate” in terms of Human Rights coverage.

 

Conclusions: China’s Mental Health Law is a landmark document providing the country’s first ever legal framework for mental health. While the Law scores high on level commitment in Core Concepts of Human Rights, the potential for equitable protection would be enhanced by increased inclusion of Vulnerable Groups.

 

Limitations: Further analyses of health and social policies in the People’s Republic of China from a Human Rights perspective would provide a deeper understanding of the Law in context.

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