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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.

Inclusive Design and Accessibility in Medellín, Colombia. AT2030 Inclusive Infrastructure Case Studies

PATRICK, M
MULDOWNEY, A
ARRUBA PALACIO, M
AGUIRRE, M
McKINNON, I
August 2023

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Prepared by the Global Disability Innovation Hub and partners for the UK Foreign, Commonwealth and Development Office

Medellín, Colombia is the sixth and final case study city under the Global Disability Innovation Hub (GDI Hub) led and UK Aid funded AT2030 Inclusive Infrastructure sub-programme. Colombia’s second largest city, Medellín is well-known for its progress in urban development in the last 20 years, moving forward from its violent history. Medellín has been designated a district of innovation and is known for innovative urban projects such as its cable cars and electric escalators that connect higher altitude, low-income communities on the peripheries of the city. This case study explores the current state of accessibility and inclusion in the city for persons with disabilities and helps understand whether such urban innovations are inclusive for all the city’s residents.

Medellín is home to nearly 80,000 persons with disabilities and Colombia does have strong legal frameworks in place to support persons with disabilities. However, this case study found that the numerous laws and regulations are not always well implemented and there is also a need to consider more diverse disabilities in city planning and design.

The research took place in 3 phases between December 2022 and May 2023, combining both virtual and face to face approaches. Phase 1 focused on understanding the current state of accessibility through desk-based research and interviews. Phase 2 captured the lived experience of persons with disabilities through interviews, photo diaries and co-design activities. Phase 3 then synthesised the findings, running multiple in-person workshops to validate and create actions towards the creation of more inclusive environments. Thematic analysis was applied to understand the research data, identifying key themes across three different stakeholder groups of People, Policy, and Practice.

The themes identified span across daily life for persons with disabilities including, poverty, transport, housing, healthcare, public spaces and recreational activities. Quotes from participants are interwoven throughout the report and strengthen the concluding actions. The report recognises what has worked in Medellin as well as areas for improvement.

Assistive technology: The current perspective in India

SENJAM, Suraj S
MANNAM, Hasheem
May 2023

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Despite many challenges, India needs to formulate evidence-based AT policy, planning within the purview of the healthcare delivery system in collaboration with various government and nongovernment sectors, including industries. This article explores the need, access, and potential challenges associated with AT services in India. Finally, we discussed various initiatives on AT in the country and possible recommendations to improve AT services across.

 

Indian J Ophthalmol. 2023 May; 71(5): 1804–1809.

doi: 10.4103/IJO.IJO_2652_22

WHO standards for prosthetics and orthotics. Assessment package. Assessment guide

WORLD HEALTH ORGANISATION (WHO)
April 2023

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The Assessment package has been developed for countries to evaluate the implementation of the WHO Standards for prosthetics and orthotics. It enables identification of areas in need of strengthening and facilitates relevant planning. The complete Assessment package consists of four components:

Assessment guide: gives directions on how to organize and implement the assessment.
Assessment tool: Excel instrument used to carry out assessments and record results.
User manual: explains how the Assessment tool should be used.
Planning document: Excel file into which the recommendations that are generated by the Assessment tool can be pasted for easy use in subsequent planning.

 

Before undertaking the assessment, stakeholders at the country level should familiarize themselves with the package components and the WHO standards for prosthetics and orthotics (Parts 1 and 2). A PowerPoint presentation describing the assessment process and a video presenting the main assessment steps and key functions of the tool are also available to download from the links below. It is recommended that assessments are undertaken in collaboration with the ministry of health and other ministries responsible for assistive technology, prosthetics and orthotics, and/or rehabilitation.

Related links:

Assessment guide

Assessment tool

User manual

Planning document

PowerPoint presentation

PowerPoint presentation in pdf

Video 

Assistive Technology Changes Lives: an assessment of AT need and capacity in England

AUSTIN, Vicki
PATEL, Dilisha
DANEMAYER, Jamie
MATTICK, Kate
LANDRE, Anna
SMITOVA, Marketa
BANDUKDA, Maryam
HEALY, Aoife
CHOCKALINGAM, Nachiappan
BELL, Diane
HOLLOWAY, Kathy
2023

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The aim of this research was to undertake a Country Capacity Assessment (CCA) to inform a more integrated approach to Assistive Technology (AT) provision in England. The results aim to support policymakers in identifying actions to strengthen service delivery to better meet disabled people’s needs, improving outcomes for AT users and reducing inefficiencies in the current approach. This report was prepared by Global Disability Innovation (GDI) Hub for the Disability Unit in the Cabinet Office His Majesty’s Government (HMG). The research was undertaken from November 2022 to March 2023 and led by the Global Disability Innovation (GDI) Hub, which is the World Health Organization (WHO) Global Collaborating Centre on AT access, using WHO tools in the Assistive Technology Assessment (ATA) suite

Inclusive Design and Accessibility of the Built Environment in Nairobi, Kenya

PATRICK, M
MULDOWNEY, A
KILIMANJARO BLIND TRUST AFRICA
TANUI, G
BUKACHI, V
CAMPBELL CLAUSE, J
McKINNON, I
October 2022

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Prepared by the Global Disability Innovation Hub and partners for the UK Foreign, Commonwealth and Development Office

This case study, funded through UK aid AT2030 programme, explores the current situation of inclusive and accessible environments for people with disabilities living in Nairobi. The research findings detailed in this report describe the current challenges and opportunities for embedding inclusive design in Nairobi’s future, providing priority recommendations and forward-thinking next steps.

The research took place in three phases between July 2021 and January 2022, combining both virtual and face to face approaches. Phase 1 focused on understanding the current state of accessibility through desk research and interviews, phase 2 captured the lived experience of people with disabilities utilising interviews, photo diaries and co-design activities. Phase 3 then synthesised findings, running multiple workshops to create actions towards inclusive environments. Thematic analysis was applied to understand the research data, identifying key themes across three different stakeholder groups of People, Policy, and Practice.

The themes identified span across daily life, poverty, transport, housing, sanitation, public spaces and recreational activities. Quotes from participants are interwoven into this report, and strengthen the concluding actions towards inclusion.

 

Global Report on Assistive Technology

WORLD HEALTH ORGANISATION (WHO)
UNITED NATIONS CHILDREN'S FUND (UNICEF)
May 2022

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The WHO-UNICEF Global Report on Assistive Technology (AT) reveals that more than 2.5 billion people need one or more assistive products, such as wheelchairs, hearing aids, or apps that support communication and cognition. Yet nearly one billion of them are denied access, particularly in low- and middle-income countries, where access can be as low as 3% of the need for these life-changing products.

The Global Report provides the best available evidence about the barriers currently preventing access, how access can be improved, and how enabling environments and AT can enable persons with disabilities to enjoy their human rights while generating a tremendous return on investment for governments. The report also makes 10 key recommendations for concrete actions that will improve access to AT, for everyone, that needs them. 

Access to assistive technology for children with disabilities is often the first step for childhood development, access to education, participation in sports and civic life, and getting ready for employment like their peers. Children with disabilities have additional challenges due to their growth, which requires frequent adjustments or replacements of their assistive products.

Intersectionality Resource Guide and Toolkit. An intersectional approach to leave no one behind

UN WOMEN
UN PRPD
2022

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The Resource Guide and Toolkit has been developed to help both organizations and individual practitioners and experts to address intersectionality in policies and in programmes. It may be used by individuals or teams to assess their own knowledge, attitudes, and practice, at a programme level as a supplement to existing design, adaptation, and assessment processes or at policy level to better understand and address the different and intersecting effects of policy on marginalised persons.

This Resource Guide and Toolkit emerged from an identified need to use an intersectional approach that included people with disabilities in all their diversity in the development, implementation and evaluation of policies, programmes, advocacy and inter-governmental processes. However, the authors and collaborators realised that an effective intersectionality resource needed to go beyond a focus on specific intersecting identities, such as disability and gender, as this would still exclude those who are most marginalised

Applying market shaping approaches to increase access to assistive technology in low- and middle-income countries

SAVAGE, Margaret
ALBALA, Sarah
SEGHERS, Frederic
KATTEL, Rainer
LIAO, Cynthia
CHAUDRON, Mathilde
AFDHILA, Novia
December 2021

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Development outcomes are inextricably linked to the health of the marketplace that delivers products and services to people in low- and middle- income countries (LMIC). Shortcomings in the market for assistive technology (AT) contribute to low access in LMIC. Market shaping is aimed at improving a market’s specific outcomes, such as access to high quality, affordable AT, by targeting the root causes of these shortcomings. The paper summarizes the findings of a market and sector analysis that was conducted under the UK aid funded AT2030 programme and aims to discuss how market shaping can help more people gain access to the AT that they need and what are the best mechanisms to unlock markets and commercial opportunity in LMICs.

 

Assistive Technology 
The Official Journal of RESNA
Volume 33, 2021 - Issue sup1: Companion Papers to the Global Report on Assistive Technology

https://doi.org/10.1080/10400435.2021.1991050

Inclusive education training guide

LEWIS, Ingrid
July 2021

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This package is designed to assist with the training of staff within CBM and its partners. It has been prepared with country and regional advisory staff in mind but will have value for project/ programme management and other staff too. It has been designed for use with small groups of participants (e.g., maximum 10-15).

This training package focuses on inclusive education. It interprets inclusive education in a broad sense as a dual process of bringing about education system change, at all levels of education, to the benefit of all learners; and supporting the needs of individual learners, especially those with disabilities. It is not a training about specific impairments, nor will it show participants how to identify, teach and support learners with specific impairments. Instead the package helps participants to understand better the overarching challenges being faced and the systematic programme and advocacy approaches that CBM, its partners and other similar organisations need to engage with.

 

This training package consists of the following booklets:

A Inclusive education and CBM

B Inclusive education and the community

C Participation and achievement for all learners

D Education system change

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.

Social protection measures for persons with disabilities and their families in response to the COVID-19 crisis: An updated overview of trends June 2021

UNPRPD
INTERNATIONAL LABOUR ORGANISATION (ILO)
June 2021

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An overview of social protection measures announced in response to COVID-19 that have made specific reference to persons with disabilities. Rather than seeking to provide an exhaustive survey of measures, it identifies the main characteristics and trends for social protection responses that specifically sought to support persons with disabilities during the crisis. This brief focuses on specific crisis response measures adopted during the COVID-19 pandemic, acknowledging that persons with disabilities also benefited from access to health care and income support provided through pre-existing social protection schemes and programmes. The document provides an update to an initial analysis in May 2020 (UNPRPD, 2020).

 

This overview draws on a database of social protection measures specifically relating to disability, which is provided as an Annex to this paper. 

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.

Taking a Disability-Inclusive Approach to Pandemic Responses

WICKENDEN, Mary
THOMPSON, Stephen
ROHWERDER, Brigitte
SHAW, Jackie
2021

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The Covid-19 pandemic has affected communities globally, yet the impact has not been equal. People with disabilities were already often living with severe disadvantage and marginalisation and, as predicted by many disability-focused agencies, Covid-19 has exacerbated these inequalities. Emerging evidence from Inclusive Futures, a UK Foreign, Commonwealth & Development Office (FCDO)-funded programme, highlights the catastrophic emotional and material impacts on people with disabilities in Nepal and Bangladesh. To respond to and plan for future crises, decision makers should consult inclusively with both organisations of people with disabilities (OPDs) and people with disabilities themselves.
 

Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

The effective engagement toolkit

LEONARD CHESHIRE
March 2021

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The engagement toolkit is a practical resource guide for anyone committed to ensuring the voice of disabled people is front and centre of their work.

Starting with influencing approaches on policy, campaigning and public affairs engagement, the toolkit provides:

• Step by step guidance on entry points for developing productive and mutually beneficial relationships with the disability community.
• Quick guides on key disability movement context, approaches and best practice
• A breakdown of key elements of the Influencing Cycle.
• Examples of where good practice has worked well.
• Links to in-depth information for further learning.

COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region

MEHROTRA, Nilika
SOLDATIC, Karen
2021

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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.

COVID-19 and State Responses in Pakistan’s Policy towards Persons with Disabilities

ORAKZAI, Saira Bano
2021

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The outbreak of COVID-19 has initiated debate in the world about the response mechanism towards different communities in society. Pandemics have a long history in human societies, changing not only human behavior but also world politics. The Russian flu of 1889, the Spanish flu of 1918, the polio pandemic of 1949, H2N2 virus, 1956, HIV/AIDS 1981, Swine flu 2001, SARS 2002 among others have caused millions of deaths in contemporary recorded history. This paper examines Pakistan’s response mechanisms for persons with disabilities through an analysis of relevant policy documents, UN guidelines and content analysis of key speeches by the Prime Minister Imran Khan, interviews and initiatives taken by the government. The paper concludes that in the absence of any definitive policy for persons with disabilities during COVID19, there has been a general ignorance and apathy towards the way persons with disabilities were given care or in dealing with them during the lockdown situation. As the COVID-19 second wave started in different parts of the world, it is time for the government to take substantive measures to ease problems faced by persons with disabilities. 

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Kindergarten Redshirting: Implications for Children with Disabilities

SANDS, Michelle M
MONDA-AMAYA, Lisa
MEADAN, Hedda
2021

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The purpose of this paper is to explore issues and concerns related to academic redshirting in kindergarten and to discuss implications of this practice for children with disabilities. Although parents cite a variety of reasons for redshirting their child, only limited evidence of academic or social benefit can be found. A search was conducted to identify studies relevant to academic redshirting and inclusive of children with disabilities published within the past 20 years, and 17 articles were identified related to the topic. From these articles, three central topics emerged: (a) prevalence, predictors, or parent motivations for kindergarten redshirting, (b) the impact of redshirting on academic achievement and post-secondary outcomes, and (c) the impact of this practice on a child’s behavior. While assumptions can be made based on the research conducted using a general education population, the impact of kindergarten redshirting on the success of children with disabilities is unclear due to the limited amount of research that currently exists. Implications for children with disabilities are discussed.

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