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Estimating need and coverage for five priority assistive products: a systematic review of global population-based research

DANEMAYER, Jamie
BOGGS, Dorothy
DELGADO RAMOS, Vinicius
SMITH, Emma M
KULAR, Ariana
BHOT, William
RAMOS-BARAJAS, Felipe
POLACK, Sarah
HOLLOWAY, Catherine
January 2022

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Assistive technology (AT) includes assistive products (APs) and related services that can improve health and well-being, enable increased independence and foster participation for people with functional difficulties, including older adults and people with impairments or chronic health conditions. This paper uses the umbrella term ‘functional difficulty’ (FD) to refer to all of these groups. This systematic review was undertaken to identify studies presenting population-based estimates of need and coverage for five APs (hearing aids, limb prostheses, wheelchairs, glasses and personal digital assistants) grouped by four functional domains (hearing, mobility, vision and cognition).

 

BMJ Glob Health. 2022; 7(1): e007662

doi: 10.1136/bmjgh-2021-007662

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.

Frequently Asked Questions: Questions you have about inclusive education but didn’t know whom to ask

INCLUSION INTERNATIONAL
June 2021

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Inclusion International is often asked what we mean by “inclusive education”. Here are the most common questions from our members together with our responses. The responses are based on the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and General Comment 4 issued by the UN CRPD committee, which outlines the implications of the CRPD for inclusive education.

Questions:

  • What is inclusive education?
  • What are the differences between exclusion, segregation, integration and inclusion?
  • What are the key ingredients of an inclusive education system?
  • What are some of the steps toward achieving inclusive education?
  • What is the difference between an inclusive education system, an inclusive school and inclusive classroom/practices?
  • What is meant by the “twin–track” approach to funding inclusive education?
  • What is the difference between accessibility and reasonable accommodation?
  • How can teachers provide equal opportunities for all students within their allocated classrooms?
  • Is transforming special schools into resource centres a good strategy for moving towards an inclusive system?
  • What is sometimes called “inclusive education” but is not?
  • What are the benefits of inclusive education for students with disabilities?
  • Is inclusive education good only for students with disabilities?
  • Is inclusive education more expensive than segregation?

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.

Determining Frailty in People With IntellectualDisabilities in the COVID-19 Pandemic

FESTEN, Dederieke A M
SCHOUFOUR, Josje D
HILGENKAMP, Thessa I M
OPPEWAL, Alyt
2021

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Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication of individuals with ID
into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic.


Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classied according to the CFS and the ID-frailty index.


Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classifed as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classied as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classied by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID.


Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.

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.

Easy Reading Handbook

EDLER, Cordula
et al
2020

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Easy Reading is a software tool supporting cognitive accessibility of web content. We want to enable people with cognitive disabilities to better read, understand and use all webpages. Our objective is to make webpages more accessible for everyone. The handbook provides information on joint research with people with cognitive disabilities, researchers and developers. In the Easy Reading project, people with learning difficulties research and develop as peer researchers.

Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

A new way to measure child functioning

UNICEF
WASHINGTON GROUP
May 2017

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"In recognizing the need for a set of questions that would produce internationally comparable data on children, the Washington Group formed a subgroup in 2009 that is chaired by the National Statistical Office of Italy (ISTAT). UNICEF joined the subgroup in 2011.

The first main activity of the subgroup was the development of a short set of questions to reflect current thinking on child functioning for inclusion in censuses and surveys. The new module uses the ICF-CY as the conceptual framework and relies on a functional approach to measuring disability.

The Washington Group/UNICEF Module on Child Functioning, finalized in 2016, covers children between 2 and 17 years of age and assesses functional difficulties in different domains including hearing, vision, communication/comprehension, learning, mobility and emotions. To better reflect the degree of functional difficulty, each area is assessed against a rating scale. The purpose is to identify the subpopulation of children who are at greater risk than other children of the same age or who are experiencing limited participation in an unaccommodating environment. The set of questions is intended for use in national household surveys and censuses"

The module is being translated into multiple languages. Supporting documentation, including a concept note, tabulation plan, templates for reporting, guidelines for interviewers and training materials are also available.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Able to include

INCLUSION EUROPE
February 2017

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"The ABLE TO INCLUDE solution improves the quality of life of people with intellectual or developmental disabilities (IDD) and similar conditions such as people affected by dementia or any kind of cognitive impairment. To achieve this, the project integrates a set of already-developed technologies to create a context-aware accessibility layer that, by being integrated with existing and future ICT tools, can improve the day-to-day life of people with IDD by understanding their surroundings and helping them to interact with the information society. The project focuses on the most important areas that a person needs to live independently and find fulfilment as an individual: to socialize in the context of the web 2.0, to travel independently and be able to work.

Three key technologies are used as a framework to develop everyday tasks:

Text and content simplifier
A pictogram-to-text, text-to-pictogram and pictogram-pictogram translation tool
Text-to-speech functionalities

These technologies are utilised to create an accessibility layer for people with IDD in everyday tasks within the framework of the information society. The accessibility layer is accessed through an open and free API that foster the introduction of an assistive technologies layer for people with IDD in any software development."

School and classroom disabilities inclusion guide for low- and middle-income countries

BULAT, Jennae
HAYES, Anne
et al
January 2017

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This guide provides strategies and recommendations for developing inclusive classrooms and schools. We specifically address the needs of Sub-Saharan African countries, which lack the resources for implementing inclusive education. However, our strategies and recommendations can be equally useful in other contexts where inclusive education practices have not yet been adopted. Strategies for enhancing existing school and classroom environment and instruction include: modify the physical environment; modify classroom managment strategies; ensure social inclusion; adopt best instructional practices; apply strategies for students with sensory disabilities; and use assistive technologies. Strategies for adopting response to intervention include: tier by tier implementation; individualised education plans; and planning for school wide adoption of inclusive practices and a multilevel system of support.

 

 

Global report: Self-Advocacy for inclusion

INCLUSION INTERNATIONAL
November 2016

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Across the Inclusion International network, many individuals and organisations took part in workshops, surveys and interviews to report:

  • what self-advocacy means to them
  • what good support is 
  • how organisations can be more inclusive
  • the vital role that families play in empowering self-advocacy.

This report provides a snapshot of work, and has some useful information for self-advocates, supporters, organisations and families. As well as containing the results from the global survey, interviews and workshops, this report also provides some useful guidance for anyone who wants to make the world more inclusive for people with intellectual disabilities.

 

A website (www.selfadvocacyportal.com) has been developed to share good practice and resources.

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