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What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

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This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

Making it count: The power of youth advocates in the disability movement

WILM, Suzanne
LEONARD CHESHIRE
HANKS, Phil
May 2019

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The 2030 and Counting pilot project sought to give youth with disabilities a seat at the table on the SDGs – providing them with the tools and confidence they need to become their own agents of change. This report provides an overview of the project, together with learnings and recommendations for the future.

In its pilot year, 2030 and Counting brought together young women and men with disabilities and DPOs from Kenya, the Philippines and Zambia to report on and advocate for their rights through the framework of the SDGs

The project had three consecutive phases: Training, Story gathering (data collection) and Influencing. 

In total, 332 reports were collected between June and September 2018. The highest number of reports were submitted under the theme of Education (44%), followed by Work (33%), and Health (14%). The category of Other, which almost entirely focused on discrimination in daily life, accounted for 8%. 80% of reporters had smartphones, offering the potential to increase the use of this feature in future.
 

Final evaluation report project for ASEAN hometown improvement through disability-inclusive communities model

MEKONG INSTITUTE (MI)
May 2019

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This report covers the objectives, process, findings and recommendations of final evaluation on APCD Project for ASEAN Hometown Improvement through Disability‐Inclusive Communities Model. The project reached to the end of implementation in its second year and required a final evaluation to assess its achievements and non-achievements in against of its desired objectives from this project. The final evaluation has assessed the relevance, effectiveness, efficiency, impact and sustainability of the project. This report provides analysis of its findings from literature review and field visits during the evaluation and provides country-specific as well as overall recommendations for further implementation of this kind project in future. 

Towards independent living: Collecting examples from Europe

ANGELOVA-MLADENOVA, Lilia
March 2019

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This Collection is a joint initiative of the European Network on Independent Living (ENIL) and the European Disability Forum (EDF). It features examples from different EU Member States, which to a different extent facilitate the right to live independently in the community.

The examples are divided into four areas, presented in different chapters:

  • Legislation and funding: State Funded Peer-Counselling – Estonia; Direct Payments – Ireland.
  • Community-based support: Peer-Counselling for women with disabilities – Austria; Supported living for adults with intellectual disabilities – Croatia; Supported Decision-Making – The Czech Republic; Mobile Mental Health Units – Greece; Personal Assistance for People with Complex Disabilities – Sweden .
  • Involvement of disabled people: Co-Production in Social Care – United Kingdom; Participation of Organisations of People with Disabilities – Italy
  • Self-advocacy: Self-Advocacy of Disabled People – Romania

 

Interpretative accounts of work capacity assessment policy for young adults with disabilities

STAFFORD, Lisa
MARSTON, Greg
BEATSON, Amanda
CHAMORRO-KOC, Marianella
DRENNAN, Judy
2019

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Young adults with disabilities are a specific target of the welfare-to-work policy introduced by many OECD countries over the past decade. The implementation of these policies is a significant concern for service delivery organisations and advocates in Australia and internationally due to complex intersecting structural barriers that persist for many young adults with disabilities. A particular focus of this article is work capacity assessments. Drawing on socio-political theories and interpretive policy analysis, the 22 in-depth interviews with personnel from service delivery organisations and advocacy organisations reveal how the deemed capacity to work process is not only interpreted as flawed, but the current policy approach disables young adults, perpetuates stigma, and creates division between service users and service providers. The accounts reinforce the need to contest such assessments and instead turn towards a rights-based capability approach permitting young adults with disability self-determination over their education-to-employment pathway.

European Disability Forum, European human rights report - issue 3, 2019. Human rights

ULDRY, Marine
2019

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This is the third issue of European Disability Forum's annual European Human Rights report Series focus on Ensuring the rights of persons with disabilities to equality and non-discrimination in the European Union. The report includes a review of equality frameworks in each EU Member State and a section on multiple and intersectional forms of discrimination. The report aims to inform organisations of persons with disabilities and policymakers of the current state of protection against discrimination based on disability in the European Union and draws recommendations with the goal of reaching inclusive equality for all persons with disabilities. The first chapter provides background information about the UN Convention on the Rights of Persons with Disabilities. Chapter 2 describes what constitutes discrimination on the grounds of disability and the obligations of States under international human rights law. Chapter 3 focuses on multiple and intersectional discrimination, by examining the effect of the intersection of disability with other grounds of discrimination. Looking at current practice, Chapter 4 describes the state of play at national level, with Chapter 5 looking at the EU level, specifically considering the current gaps in ensuring better protection against discrimination based on disability. Finally, the report draws conclusions and recommendations addressed to the EU and its Member States.  

Insights from ASEAN hometown improvement project: Towards improved practice

Asia-Pacific Development Center on Disability (APCD)
2019

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The ASEAN Hometown Improvement Project, aimed to tackle challenges emerging from urbanization and the rise of the ageing population in the ASEAN region by attempting timely and relevant improvements to disability inclusive ‘hometowns’. 

 

Three approaches were utilized:

1) Promotion of an inclusive business through capacity building of persons with disabilities

2) Promotion of accessibility features in the community and other public places, as well as to information, communication, and transportation

3) Promotion of cooperation with government sector via discussions to find solutions to improve the livelihood of persons with disabilities

 

The sections, arranged per country in alphabetical order, contain the following: Hometown Improvement Project description and backgrounder; Capacity Building Workshop details; Key Partners and Stakeholders; Training Results; Challenges; Framework for Good Practice; and Way Forward and include:

  • Cambodia: Phnom Penh Center for Independent Living's Bakery by Persons with Disabilities
  • Indonesia: Batik Design and Marketing Management at Kampung Peduli
  • Malaysia: Branding and Marketing Management for Bakery and Handicraft by Persons with Disabilities at CBR Semenyih
  • Myanmar: Mushroom Production by Persons with Disabilities with Shwe Minn Tha Foundation
  • Phillipines: Sustainable Inclusive Urban Micro-Gardening and Community-Based Cooperative at Barangay 177
  • Thailand: Earthworm Casting and Cactus Farming at Farm D
  • Vietnam: Fermented Dry Bamboo Waste Fertilizer at Bamboo Dana Co. Ltd

 

 

Realising children's right to social protection in Middle East and North Africa. A compendium of UNICEF's contribution's

ARCHIBALD, Edward
January 2019

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This Compendium documents the broad range of UNICEF’s social protection interventions in MENA from 2014-2017. 
 

The Compendium includes 20 case studies detailing UNICEF’s contributions in the MENA region across the following five Action Areas

 

  • Evidence and Advocacy (Algeria, Egypt, Iraq, Iran, Lebanon, Yemen, Morocco)
  • Policies, coordinating and financing (Djibouti, Morocco)
  • Cash transfer programming and systems strengthening (Egypt, Jordan, Tunisia)
  • Cash plus interventions and social work (Iraq, State of Palestine (highlights children with disabilities), Yemen)
  • Social protection in fragile and humanitarian contexts/settings (Yemen, Lebanon, Jordan, Syria). The Syrian programme was "Reaching children with complex disabilities through cash transfers and case management"

 

 

 

Innovate for Inclusion. Four cases of application of the social innovation lab methodology to enhance disability inclusion in mainstream settings

MAARSKE, Anneke
NEDERVEEN, Matthijs
BAART, Judith
2019

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This publication reflects back on four co-design processes undertaken by Light for the World’s Disability Inclusion Lab during the past few years. These different journeys in solution development have demonstrated the power of this methodology to create genuine inclusion in livelihood programming while striving to empower persons with disabilities to achieve economic success. In this publication the social innovation lab methodology is described as a unique approach to inclusive programming, highlighting four cases: The Livelihood Improvement Challenge in Uganda, the lab in the EmployAble programme in Ethiopia, the AgriLab in Cambodia, and the InBusiness pilot in Kenya. Lessons learnt are described.

Enabling Education Review Issue 8 - 2019: Family involvement in inclusive education

CORCORAN, Su
LEWIS, Ingrid
Eds
2019

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Articles in this issue include:

Working together to advocate for our children in Trinidad and Tobago

The inclusion of deaf children in Malaysia: parental support and advocacy

Family-mediated intervention to support inclusion in Bulgaria

Creating inclusivity and diversity through a parent support group in Kolkata, India 

The positive impact of family involvement in inclusive education, Tetouan, Morocco

Epilepsy: a public health imperative

WORLD HEALTH ORGANISATION (WHO)
2019

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This report is the first global report on epilepsy summarising the available evidence on the burden of epilepsy and the public health response required at global, regional and national levels.

This report is a call for sustained and coordinated action to ensure that every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world. It is time to highlight epilepsy as a public health imperative, to strongly encourage investment in reducing its burden, and to advocate for actions to address gaps in epilepsy knowledge, care and research.

Decolonizing schools: Women organizing, disability advocacy, and land in Sāmoa

ANESI, Julianne
2019

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In the 1970s and 1980s, Sāmoan women organizers established Aoga Fiamalamalama and Loto Taumafai, two educational institutions, in the independent state of Sāmoa. This article examines these schools’ support of students labelled as ma’i (sick), specifically those with intellectual and physical disabilities. Through oral histories and archival research, I show the vital role performed by the women organizers in changing the educational system by drawing attention to the exclusion of disabled students. I focus on the collective labor of Sāmoan women and their influence in decolonizing schools. In this regard, the women organizers used Sāmoan concepts of fa’a Sāmoa (culture), fanua (land), and tautua (service) as ways to redefine the commitment of the education system. This is a story about daring to reimagine indigenous disabled bodies and their futures through knowledge systems, theory, and literature.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Disability Employment Policy 101 Guide

LeBLANC, Nicole
BUEHLMANN, Eric
2019

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This USA based toolkit is intended to help self-advocates and their allies to advocate for Real Jobs for Real Pay and for Competitive Integrated Employment (CIE). It covers the issues with sheltered workplaces and the advantages of CIE. It also covers what individuals can do locally, at the State level and nationally. The Workforce Innovation and Opportunity Act (WIOA) is outlined. Four self advocate stories are given.

3rd World Disability & Rehabilitation Conference (WDRC 2018) - Book of abstracts

O'CONNOR, Loren
Ed
November 2018

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The 3rd World Disability & Rehabilitation Conference 2018 was held from 12th and 13th November 2018 in Kuala Lumpur, Malaysia. People with disabilities and researchers, practitioners, policy makers, industry experts, university faculty and organizations along with advocates and volunteers working with people with disabilities participated and presented their original and unpublished results of conceptual, constructive, empirical, experimental, experiential or theoretical work through abstract and poster presentation. Total 33 participants presented their abstract and poster throughout this conference. The theme of WDRC 2018 was “Global advocacy and rights of people with disabilities”

Saving lives and leaving no one behind - The Gaibandha Model for disability-inclusive disaster risk reduction

ROTHE, Manuel
BROWN, David
NEUSCHAFER, Oliver
October 2018

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"The Gaibandha Model" good practices guide outlines a framework for successful disability-inclusive disaster risk reduction programming. It is based on the experience of CBM and its partners in implementing community-based disaster risk reduction programs in some of the most flood-affected communities in Bangladesh. The model puts people with disabilities at the center of disaster risk reduction. They are the agents for change, working with the community to improve local systems of disaster prevention, preparedness and response to become more accessible and inclusive.

Anticipated Barriers to Implementation of Community-Based Rehabilitation in Ribeirão Preto, Brazil

FIORATI, Regina Celia
CARRETTA, Regina Y Dakuzaku
JOAQUIM, Karine Pereira
PLACERES, Aline Ferreira
JESUS, Tiago Silva
2018

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Purpose: Disability is a global health and a global development concern. To address both issues, a community-based rehabilitation (CBR) approach is increasingly recommended to meet a spectrum of needs, especially for people with disabilities. It is first necessary to understand the perceptions of local, frontline providers, in order to design effective measures for implementing CBR programmes. This paper aimed to understand the conceptions of Primary Healthcare Providers (PHPs) - serving a sub-urban, socially-vulnerable territory in Brazil - about: 1) disability, 2) rehabilitation, and 3) the possible local implementation of a CBR strategy, including any anticipated barriers.

 

Method: Cross-sectional, exploratory qualitative research was based on focus groups conducted between 2013 and 2016. It involved a total of 78 PHPs serving the western region of the Ribeirão Preto municipality in São Paulo, Brazil. Data analysis was based on Habermas’ critical hermeneutics approach.

 

Results: PHPs understood disability mostly within the biomedical paradigm. Similarly, the predominant conception of rehabilitation was focussed on enabling individuals’ capacity, more than their environment. For local CBR implementation, the barriers that were anticipated were: 1) difficulties in managing and running action across sectors, and 2) the broader socio-political environment that hardly empowers civil society and is affected by power differentials.

 

Conclusion and Implications: While local PHPs identified important CBR implementation barriers which are contextual in nature, the predominant conceptions of disability and rehabilitation (i.e., biomedical, impairments-based) also act as a barrier. Contextual and cognitive barriers must both be addressed when envisioning a local CBR implementation

“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).

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.

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’.

INCLUDE US! Good practices in the inclusion of persons with disabilities in Myanmar

HUMANITY & INCLUSION (HI)
2018

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In 2015, Humanity & Inclusion HI began the project: “Empowering persons with disabilities to contribute to equal access to basic social services and local policymaking processes in under-resourced areas of Ayeyarwady and Mandalay”. The project supported Disabled Peoples Organizations and other civil society groups to participate in the development of inclusive regional policies and programmes, and to promote good practices contributing to greater access to services for persons with disabilities. An aim was also to document, publish and disseminate these good practices throughout Myanmar, increasing awareness and understanding in order to sensitise people to disability inclusion and influence policy change. Rather than focusing on what is not working, this report seeks to shift attention to what has worked locally and how it could be replicated in other parts of the country, providing constructive, practical recommendations to decision-makers, service providers and other community groups in Myanmar. The report is related to two projects. The second is “Advocacy for Change: Fostering protection and rights of men and women with disabilities in Myanmar”. 

 

There are global recommendations. There are seven good practices:

  • Related to education:  Case Study I: Promoting Inclusion of children with disabilities in Middle Schools of Ayartaw. Case Study II: How the development of the teacher training promotes inclusion of all children in education
  • Related to economic life: Case Study III: How partnerships between private companies and organizations of people with disabilities can improve access to employment and vocational training
  • Related to social/community life: Case Study IV: Giving the Myanmar Deaf Community access to information.  Case Study V: How parental advocacy can make a difference
  • Related to political life: Case Study VI: Community advocacy in obtaining the National Registration Card. Case Study VII: Supporting people with disabilities to participate in Myanmar elections

 

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