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Global Report on Children with Developmental Disabilities: from the margins to the mainstream

WORLD HEALTH ORGANISATION (WHO)
UNITED NATIONS CHILDREN'S FUND (UNICEF)
September 2023

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This WHO-UNICEF Global Report is a call for action to intentionally include children and young people with developmental disabilities in renewed global and country level efforts to enable transformations towards the SDGs.  It proposes priority actions to accelerate individual-, family-, community-, and society-level changes to achieve inclusion and health equity. The report makes the case for greater investment and accountability to build inclusive and responsive multisectoral care systems for children and young people with developmental disabilities. Using findings from research and practice and guided by the tenets of international human rights conventions, the report provides key insights into the state of knowledge, policy, programming, and public monitoring in respect of developmental disabilities.

Engagement with Organizations of Persons with Disabilities. Learning about meaningful engagement in public health emergencies, including COVID-19

UNITED NATIONS CHILDREN'S FUND (UNICEF)
December 2021

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This report was produced under a United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) project to support countries in designing and implementing disability-inclusive response and recovery planning for COVID-19. Throughout this project, UNICEF documented examples of good practice and learnings from partnerships with organizations of people with disabilities (OPDs) in public health emergencies, including COVID-19. The objectives of this initiative were to gain a better understanding of the factors that facilitate effective partnerships between humanitarian actors and local, regional, and national OPDs, and the challenges to be addressed.

This report presents the findings from a ‘deep dive’ undertaken by UNICEF East Asia and the Pacific Regional Office to consider the experiences in Cambodia, Indonesia, the Lao People’s Democratic Republic, Malaysia, Myanmar, the Philippines and the Pacific. The target audience for this report includes OPDs and humanitarian actors at global, regional, and country levels.

A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Disability Inclusion and Global Development: A Preliminary Analysis of the United Nations Partnership on the Rights of Persons with Disabilities programme within the context of the Convention on the Rights of Persons with Disabilities and the Sustainable

WESCOTT, H N
MACLACHLAN, M
MANNAN, H
2021

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Purpose: This paper provides a preliminary snapshot of the proposed priorities approved by the United Nations programme designated to support the progressive realisation of the CRPD, the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) outlined by specific Convention Articles and, more broadly, the Sustainable Development Goals (SDGs).

 

Method:A content analysis of project proposal summaries approved for funding by the UNPRPD was conducted against the CRPD and SDGs. A matrix of data was produced to draw links between proposed objectives and established international frameworks guiding global development.

 

Results:This analysis provides two sets of information. First, a look at the distribution of rights identified in the initial project proposals and accepted by the UNPRPD, establishing a baseline of priorities and outstanding need. Second, it identifies issues that need to be addressed to ensure the advancement of all rights outlined in the CRPD and equitable achievement of the SDGs.

 

Conclusion and Implications:Disability inclusion is necessary to achieve the SDGs in an equitable manner by 2030, as well as implement the CRPD. The UNPRPD supports a diverse range of projects spanning many of the Convention Articles and global goals; however, full participation and scope of disability inclusion requires programming in all areas of both instruments, and this has not yet been fully integrated in the UNPRPD funded project proposals.

 

Limitations: This study was limited to the available UNPRPD project proposal summaries that were successful, and did not include all the proposals submitted for consideration. The proposals accepted for funding give insights into the disability inclusive development priorities chosen for project implementation by UN agencies.

The case for investing in assistive technology

ATscale
November 2020

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In this new report, ATscale describes the enormous gains that access to assistive technology (AT) can have in health, for the community and the economy. The figures are dramatic: investment in the provision of four assistive products - hearing aids, prostheses, eyeglasses, and wheelchairs - will result in a return on investment of 9:1.

Having access to AT can make the difference between failure or success in school, between a job or unemployment, between a life of opportunity or a life of dependency. An example: for a child in a low- or middle-income country, access to AT can make a difference of $100,000 in lifetime income.

Altogether, providing AT to all who need it would yield more than USD 10 trillion in economic benefits over the next 55 years.

Investing in AT both has a transformative impact on people’s wellbeing and makes sound economic sense for funders and governments. 

Increasingly consulted, but not yet participating: IDA global survey report on participation of Organisations of Persons with Disabilities

INTERNATIONAL DISABILITY ALLIANCE (IDA)
November 2020

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This new report presents the findings of the first-ever global survey led by OPDs on their participation in decision making processes of governments, the UN system and funding agencies.

The IDA Global Survey is part of a strategy to hold decision-makers accountable for their commitments under Articles 4.3 and 32 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Based on testimonies collected from OPDs in 165 counties, the report assesses the quality, depth, scope and relevance of the OPDs participation in programmes and policies, and offers recommendations for governments, the UN system and funding agencies.

Excluded from the Excluded: People with Intellectual Disabilities in (and out of) Official Development Assistance

Inclusion International
2020

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This report from Inclusion International analyzes data available through the Organization for Economic Cooperation and Development (OECD) Development Assistance Committee (DAC)’s Creditor Reporting System (CRS), which reveals that mainstream development projects fail to include people with intellectual disabilities, and in many cases use project methodologies that promote segregation and other human rights violations.

 

Analysis of ODA data from 2014 to 2018 found that 99.98% of ODA funding did not include people with intellectual disabilities, that 36% of the ODA projects that did include people with intellectual disabilities were not CRPD-compliant, and that only 2% of aid relevant to people with intellectual disabilities and their families was delivered through OPDs.

 

This report urges action from donors to ensure that the commitment to disability-inclusive development under Article 32 of the CRPD is also fulfilled for people with intellectual disabilities, and sets out recommendations for funders to ensure CRPD-compliance and inclusion in the projects they support.

Funding ≠ Inclusion: Segregation and CRPD Non-Compliance in Official Development Assistance

Inclusion International
November 2020

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This two-page summary resource compiles key data on the CRPD-compliance of Official Development Assistance (ODA)-funded programmes. This analysis was originally published in Inclusion International's 2020 report, Excluded from the Excluded, which revealed that 36% of projects that included people with intellectual disabilities in 2018 used methodologies that promoted segregation.

 

This summary resource profiles key data on the CRPD compliance of ODA-funded programme methodologies by thematic area - including livelihoods, education, emergency response, and service provision programmes. The summary resource also shares key recommendations for organizations implementing programmes to ensure CRPD-compliance.

No one left behind? Exclusion of People with Intellectual Disabilities in Official Development Assistance

Inclusion International
November 2020

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This one-page factsheet presents key data from Inclusion International's 2020 report "Excluded from the Excluded," which revealed that people with intellectual disabilities are excluded from 99.98% of Official Development Assistance (ODA)-funded programmes. The factsheet also shares key recommendations for funders to ensure that no one is left behind by ODA funding.

Disability rights during the pandemic. A global report on findings of the COVID-19 Disability Rights Monitor

BRENNAN, Ciara Siobhan
October 2020

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This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

 

A webinar was held to mark the launch of the report

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

Disability, stigma & the role of innovation - Disability innovation live

AUSTIN, Vicki
CAREW, Matthew
MIRZOYANTS, Anastasia
BARBARESCHI, Giulia
August 2020

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This webinar focussed on the role of stigma in preventing disability inclusion, and what enables it to be overcome, focused on innovative and creative methods

The speakers talked about:

  • Culture, Paralympic legacy & how innovation can change mindsets
  • Stigma research incorporating the perspectives of persons with disabilities & disability inclusive research processes
  • Kenyan youth & the perception of people with disabilities
  • Assistive technology, identity & the role of innovation

Introduction: disability, partnership, and family across time and space

VIKSTRÖM, Lotta
SHAH, Sonali
JANSSENS, Angélique
2020

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Notions of family life and romantic partnership, like notions of disability, have been culturally constructed and socially produced over historical time, and our understandings of these notions are being continually challenged and re-negotiated across time and space. Policies, institutions, and cultural practices across the globe have brought about changes to the construction of the family and to the rights and inclusion of disabled people in private and public life. This special issue brings together a collection of studies from different countries and time periods to explore the interplay between disability, romantic partnerships, and family life across the individual lifetime and between generations. With this interdisciplinary collection, we seek to merge disability research and research on family and partnerships through a life course lens. This offers unique insights and opportunities to interconnect his- torical and cultural location and changing social institutions with individual and family experiences. This introduction presents the eight studies in the collection and discusses them within a life course frame that views disabled people’s roles as partners, spouses, and members of a family. In so doing, it engages in an analysis of (dis)similarities concerning how family dynamics, romantic relationships, and disability have developed over time and in different spaces.

Multifaceted interventions show limited impact on community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

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This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries (USA, China, Germany, Italy, Australia) with the majority from USA (10).

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

A total of 15 studies using a multifaceted intervention were included in this review. Of these, nine were randomized and six were quasi-experimental. Study participants were adults, 18 years or older, with a disability, who had exited secondary school services. Participants identified as having the following disabilities: intellectual disability, mental illness, traumatic brain injury, aging-related disabilities (e.g., dementia, Alzheimer’s, reduction in activities of daily living), or combinations of two or more classifications.

 

Campbell Systematic Reviews. 2020;16:e1092.

https://doi.org/10.1002/cl2.1092

Disability Inclusion 101. Basic Concepts and Approaches

UNITED NATIONS
2020

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Through a conversation with panelists, the Disability Inclusion 101: Basic Concepts and Approaches webinar seeks to address the following topics:

  • Understanding the concept of disability: who are persons with disabilities? 
  • What is the human rights-based approach to disability? 
  • Universal design, accessibility, and reasonable accommodation 
  • The twin-track approach: combining disability-targeted initiatives with disability inclusion in mainstream initiatives 
  • What is an organization of persons with disabilities and how to engage with them

 

Opening Speaker: USG Ana Maria Menéndez, Senior Advisor on Policy to the Secretary-General

Panelists:

Mr. Facundo Chavez Penillas, Human Rights & Disability Advisor, Office of the United Nations High Commissioner for Human Rights (OHCHR)

Ms. Charlotte Vuyiswa McClain-Nhlapo, Global Disability Advisor, World Bank
Mr. Stefan Tromel, Senior Disability Inclusion Specialist, International Labour Organization (ILO)
Ms. Elham Yussefian, Inclusive Humanitarian and DRR Advisor, International Disability Alliance
 

The webinar was moderated and facilitated by Mr. Gopal Mitra, Senior Social Affairs Officer, and Ms. Georgia Dominik, Social Affairs Officer, Disability Team, Executive Office of the Secretary-General (EOSG).

Inclusion of persons with disabilities in humanitarian action. Case studies collection 2019. 39 examples of field practices, and learnings from 20 countries, for all phases of humanitarian response

PALMER, Tom
et al
December 2019

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Published at the same time as the Inter-Agency Standing Committee (IASC) Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action, this report aims to support their uptake and promote learning by example. This report presents 39 short case studies on inclusive practices for persons with disabilities in humanitarian action and disaster risk reduction (DRR). It is designed for humanitarian stakeholders with limited experience of working with and for persons with disabilities, as well as for organizations of persons with disabilities (OPDs) planning to engage in humanitarian action and DRR. The report draws lessons from field practices, but does not provide technical guidance. The IASC Guidelines are the reference document to seek in-depth theoretical and technical information

 

The case studies focus on:

  • Inclusive disaster risk reduction and preparedness
  • Collecting and using disability disaggregated data for assessments and programming.
  • Participation of persons with disabilities and their representative organizations in humanitarian response and recovery
  • Removing barriers to access humanitarian assistance and protection.
  • Influencing coordination mechanisms and resource mobilization to be inclusive

 

The evidence presented in this report was identified in 2017-2018 through a desk review of publicly available reports and internal documents on projects implemented by CBM, HI and IDA members, as well as their partners and affiliate members. Field visits to Lebanon, Jordan, Kenya, Nepal, and the Philippines conducted in 2018 also informed the case-study collection and documentation

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