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Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
October 2020

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In order to show the scale and scope of shackling of people with real or perceived psychosocial disabilities worldwide, Human Rights Watch conducted a study of mental health legislation, relevant policies, and practices across 60 countries around the world.

This report includes research and testimonies collected by 16 Human Rights Watch researchers in their own countries. We worked closely with partner organizations to visit private homes and institutions in Afghanistan, Burkina Faso, Cambodia, Ghana, Indonesia, Kenya, Liberia, Mexico, Mozambique, Nigeria, Sierra Leone, Palestine, Russia, the selfdeclared independent state of Somaliland, South Sudan, and Yemen. Human Rights Watch researchers interviewed more than 350 people with psychosocial disabilities, including those who were shackled at the time of research or had been shackled at least once in their lives, and more than 430 family members, caregivers or staff working in institutions, psychiatrists, psychologists, nurses and other mental health professionals, faith healers, lawyers, government officials, representatives of local nongovernmental organizations (NGOs), including organizations of persons with disabilities, and disability rights advocates. The testimonies were collected between August 2018 and September 2020 through in-person and phone interviews.

Desk research and consultation with international disability experts was also undertaken

General orientation on sustainable livelihood for Filipinos with disabilities

LEONARD CHESHIRE DISABILITY PHILIPPINES FOUNDATION
October 2020

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This event was organised by Leonard Cheshire Disability Philippines Foundation Inc and Chambers of Massage Industry of Visually Impaired in partnership with the Department of Social Welfare and Development Sustainable Livelihood Program. The programme is outlined and followed by an Open Forum for questions and discussion.

How can innovative partnerships make data stronger and more inclusive?

WELLS, Claudia
SABITI, Bernard
CARANZA TRESOLDI, Javier
October 2020

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Development Initiatives (DI) Director of Data Use Claudia Wells, Senior Strategic Partnerships & Engagement Manager Bernard Sabiti and Founder and Director of the GeoCensos Foundation Javier Carranza Tresoldi explore the power of partnerships to improve data. Looking at the benefits, challenges and nuances of collaboration between all kinds of actors, they share case studies of what works and practical advice to build strong partnerships. 

When does disability begin? Identifying the age of onset

MONT, Daniel
October 2020

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Issues are discussed about adding to the Washington Group questions to collect information on the age of disability onset. Issues include:

  1. People may not remember the exact age
  2. The exact age may be difficult to determine
  3. People may have onsets of difficulties in different domains at different times

 

Inclusive Design: What if we built a world that was accessible to all?

McKINNON, Iain
CARR, Peter
PATRICK, Mikaela
MONGOLIA RESEARCH TEAM
ASTERINA, Nina
October 2020

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This webinar, hosted by Global Disability Innovation (GDI) hub, brings together a diverse panel of experts to discuss what inclusive design looks like in practice for them, who benefits and how it can offer methods to build a more accessible world that benefits all of us.

 

Speakers presentations were:

  • What inclusive design means to GDI Hub and why it matters, drawing on our experience working in both the UK and globally
  • An overview of inclusive design of the built environment in the UK and Kenya, including the role of access panels to embed the views of disabled people in planning and decision-making
  • An introduction to GDI Hub’s AT2030 programme including our Inclusive Infrastructure research sub-programme that is conducting six global case studies in LMIC cities around the world over the next 2-3 years.
  • The challenges and opportunities for an accessible Mongolia and the importance of Disabled People’s Organisations (DPO) engagement in decision-making
  • The importance of inclusive planning processes for accessible cities in Indonesia

Message to Covid-19 Disability Rights Monitor

TESORIERO, Paula
October 2020

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A message by the chair of the Disability Working Group at GANHRI (Global Alliance of National Human Rights Institutions), on the occasion of the launch of the COVID-19 Disability Rights Monitor Global Report.

Addressing disability-related costs through social protection systems

COTE, Alexandre
CARRARO, Ludovico
SIJAPATI BASSNET, Bimbika
NASIIR, Mercoledi
SRISOM, Sawang
WAKANIYASI, Josh
O'BRIEN, Felicity
October 2020

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Understanding disability-related costs is critical to building social protection systems that truly support inclusion, participation, and sustainable escape from poverty of persons with disabilities across the life cycle. It challenges some usual approaches with regards to targeting, mutually exclusive benefits, and focus on incapacity to work rather than support to inclusion. 

Supporting the dissemination of a background paper, the webinar presented the diversity of disability-related costs and the role of different methods used to assess them. It also presented some practices of accounting for disability costs in the design of mainstream social protection schemes as well as how low and middle-income countries can progressively build the combination of cash transfers, concessions, and services needed to address them.

 

Speakers topics were:

Understanding disability-related costs for better social protection systems.

Accounting for disablity related costs in design of mainstream family assistance schemes, the case of Moldova and Mongolia.

Supporting a survey to estimate the good and services required for basic participation in Indonesia.

How social protection systems can progressively address disability-related costs: the case of Thailand. 

Not either or Disability allowance and economic empowerment in Fiji.

Inclusive design research in a pandemic: Working remotely in Ulaanbaatar, Mongolia

PATRICK, Michaela
NARANGEREL, Tamirkhuu
October 2020

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The Inclusive Infrastructure sub-programme of the AT2030 programme began in March 2020, right out the outset of the COVID-19 pandemic.

Over three years this part of the AT2030 programme will be conducting case studies in six cities on the current state of accessibility and inclusion of the built environment in each of those places. 

The first case study took place in Ulaanbaatar, Mongolia. In March 2020, research was about to begin, Mongolia closed its border as the Coronavirus pandemic escalated. This meant to travel to Ulaanbaatar to conduct research was not possible and new ways of working remotely had to be adopted.

Research was carried out by collaborating with a local team based in Ulaanbaatar: AIFO, an Italian NGO that has been working in Mongolia since 1993 and two Disabled Persons’ Organisations: ‘Universal Progress’ Independent Living Center and Tegsh Niigem.

Perspectives on working together, collaborating remotely and why this research is relevant to the country are shared.

Reflection on the 30th Anniversary of the ADA in time of mass uncertainty

LeBLANC, Nicole
October 2020

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Nicole LeBlanc, a disability rights activist, talks about the 30th anniversary of the Americans with Disabilities Act (ADA) and what she hopes for the next 30 years. Areas highlighted on the road to achieving equality and equity for all include health and health services, housing, flexible working, vocational rehabilitation and disaster preparedness.

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities (Spotlight on work and employment)

ADAMS, Lisa
October 2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The guideline is intended to be used as an advocacy tool for OPDs to engage with government, development agencies and other civil society actors on the implementation of the SDGs in line with the UN Convention on the Rights of Persons with Disabilities (CRPD). The thematic focus of this guideline is work and employment. The guideline will explore how the right to work and employment of persons with disabilities can be applied to the SDGs. In particular, this guideline will look at how the rights enshrined in CRPD Article 27 (Work and employment) can be addressed within SDG 8 (Decent Work and Economic Growth). 

"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

BOTHA, Monique
DIBB, Bridget
FROST, David M
2020

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N1⁄420) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understand- ings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure stra- tegically. The implications of these findings are discussed further in the article.

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

Disability inclusion in the United Nations system - Report of the Secretary General

SECRETARY-GENERAL OF THE UNITED NATIONS
October 2020

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When launching the Strategy in June 2019, the Secretary-General stated that the United Nations would lead by example and raise its standards and performance on disability inclusion across all pillars of its work, from Headquarters to the field. The present report outlines the first steps on the path to achieving transformative and lasting change for persons with disabilities across the United Nations system

 

The report is organized into seven sections. Following the introduction, an overview of the advances made in the United Nations on disability inclusion, including the adoption of the Strategy, is provided in section II; the first year of implementation of the Strategy at the entity and country levels is reported on in section III; coronavirus disease (COVID-19) response and recovery efforts are the focus of section IV; the overarching actions for implementation of the Strategy are considered in section V; challenges and opportunities are highlighted in section VI; and the conclusion and recommendations for consideration by the General Assembly are contained in section VII. The report provides an analysis of information from 57 United Nations entities1 that reported under the Strategy ’s entity accountability framework and seven United Nations country teams that completed the accountability scorecard on disability inclusion as part of a targeted roll-out.

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Work conditions, support, and changing personal priorities are perceived important for return to work and for stay at work after stroke – a qualitative study

LINDGREN, Ingrid
Brogårdh, Christine
PESSAH-RASMUSSEN, Helene
JONASSON, Stina B
GARD, Gunvor
2020

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Purpose: To explore work related and personal facilitators and barriers for return to work (RTW) and stay at work after stroke.

 

Materials and methods: Twenty individuals post-stroke (median age 52 years; seven women) were inter- viewed in focus groups. Data were analyzed by using qualitative content analysis.

 

Results: An overall theme “Work conditions, support and changed personal priorities influenced RTW and stay at work after stroke” emerged and covered three categories: “Adjustments and flexibility at the work place facilitated RTW and a sustainable work situation”, “Psychosocial support and knowledge about stroke consequences facilitated work and reduced stress”, and “Changed view of work and other personal priorities”. Physical adjustments at the work place and flexibility in the work schedule were perceived facilitators. Support from family and colleagues were important, whereas lack of knowledge of stroke dis- abilities at the work place was perceived a barrier. Also changed personal priorities in relation to the work and the current life situation influenced RTW in various ways.

 

Conclusions: The individual’s opportunities to influence the work situation is a key factor for RTW and the ability to stay at work after stroke. Adjustments, flexibility, support, knowledge of stroke, and receptiv- ity to a changed view of work are important for a sustainable work situation.

The Liberia Evidence Lab: A new scalable model to deliver School Eye Health

EYElliance & Clinton Health Access Initiative (CHAI)
October 2020

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The case study highlights how school eye health programs can be successfully scaled in under-resourced and under-capacitated contexts, and ultimately supported through a sustainable financing mechanism. The case study shows how school eye health is an entry point and critical building block to comprehensive national eye health coverage. Through a pilot of the school eye health model, approximately 50,000 children received eye screenings across three counties in Liberia

The hidden impact of COVID-19 on children and families with disabilities.

ORSANDER, Martina
MENDOZA, Pamela
BURGESS, Melissa
ARLINI, Silvia Mila
October 2020

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This report is one in a series presenting findings from the Global COVID-19 Research Study on The hidden impact of COVID-19 on children. The results presented here focus on the impacts of COVID-19 on children and parents/caregivers with disabilities and their families, drawing on data from our representative sample of 17,565 parents/ caregivers and 8,069 children in our programme participants group. Topics covered include impacts of COVID-19 on household economy, health and nutrition, child education and learning, child rights, relationships between children and their parents/caregivers, psychosocial wellbeing, family separation and household violence.

The research was implemented in 46 countries in June and July 2020 and resulted in the largest and most comprehensive survey of children and families during the COVID-19 crisis to date, with 31,683 parents/ caregivers and 13,477 children aged 11–17 participating in the research. The research sampled three distinct population groups:

1. Save the Children programme participants;

2. Specific population groups of interest to Save the Children;

3. The general public.

A representative sample of Save the Children programme participants with telephone numbers or email addresses was obtained in 37 countries.

 

A GLOBAL RESEARCH SERIES

Leave no refugee behind - Inclusion and forced migration

LIGHT FOR THE WORLD
October 2020

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By WHO estimates, at least 12 million forcibly displaced people worldwide have a disability. Displaced persons with disabilities face violence, discrimination and barriers to services at a higher rate than other refugees and internally displaced persons (IDPs). Humanitarian actors have to protect the rights of persons with disabilities in contexts of forced migration. This must include accessible services as well as active participation of refugees and IDPs with disabilities in decision-making structures.

 

This Issue Brief covers the situation of forcibly displaced persons with disabilities, policy framework and legal requirements, and the work of Light of the World in this area (mainly in South Sudan). 

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