In 2018, the World Federation of the Deafblind (WFDB) launched the first global report on the situation of persons with deafblindness, At Risk of Exclusion from CRPD and SDG Implementation: Inequality of Persons with Deafblindness. This report sought to open a dialogue between national and international disability rights and development stakeholders and drew attention to one of the most marginalised and underrepresented groups in the world. Representing 0.2% to 2% of the population, persons with deafblindness are very diverse yet hidden group, and are more likely to be poor, unemployed, and have low education outcomes[i].
Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes[ii]. – World Federation of the Deafblind, At Risk of Exclusion from CRPD and SDG Implementation: Inequality and Persons with Deafblindness
The Convention on the Rights of Persons with Disabilities (CRPD) and Agenda 2030 and the Sustainable Development Goals (SDGs) have triggered greater attention of persons with disabilities. Underscoring the importance of ‘leave no one behind’, there is growing momentum for greater disability inclusion. However, the first global report highlighted that persons with deafblindness are often not legally recognised as a distinct disability group, resulting in persistent statistical invisibility, even where disability data is collected. The lack of reputable data contributes to significant gaps in services to support persons with deafblindness. This “relative invisibility of persons with deafblindness is both a cause and a consequence of a lack of understanding across disability rights and development stakeholders, both in terms of the extent and diversity of their issues, as well as their specific inclusion requirements”[iii].
The first global report outlined findings and recommendations across a broad range of policy areas and flagged three initial steps to bridge the gaps:
Since the first global report was launched in 2018, disability inclusion has gained visibility through global events, such as the Global Disability Summit (GDS) of 2018 in the United Kingdom and the subsequent GDS in 2022 hosted remotely, as well as networks and mechanisms, such as the Global Action on Disability (GLAD) Network and AT2030[iv]. These events and mechanisms have provided valuable space to raise awareness of disability inclusion and serve to advance the global dialogue on the practical ways to implement the CRPD and SDGs. However, economic cuts to bilateral funding, the COVID-19 pandemic lockdowns and restrictions, and increased insecurity in certain regions have affected this progress.
This second global report seeks to build on the findings and recommendations of the first global report and consolidate evidence from different regions and diverse groups, including persons with deafblindness and professionals. This report builds on the quantitative analysis of the first report, providing data on children with deafblindness. The qualitative analysis identifies good practices, essential elements, measures that increase and improve the inclusion of persons with deafblindness, case studies to illustrate and inspire good practices and programmatic approaches, and recommendations across thematic areas. The aim of this report is to serve as an advocacy tool for WFDB members and their allies to stimulate collaboration and partnerships to advance the rights of persons with deafblindness and to inform stakeholders on how to foster the inclusion of persons with deafblindness, Key audiences for this report include national and local government officials and statutory bodies, donors, non-governmental organisations (NGOs), organisations of persons with disabilities (OPDs), service providers and frontline staff, intergovernmental organisations (such as United Nations entities and country teams), and others.
[iv] GLAD is a coordination body of bilateral and multilateral donors and agencies, the private sector, and foundations working to enhance the inclusion of persons with disabilities in international development and humanitarian action, https://www.internationaldisabilityalliance.org/content/global-action-disability-glad-network, May 2022. AT2030 is a network led by the Global Disability Innovation Hub and that tests what works to improve access to assistive technology, https://at2030.org/, May 2022.
Building on the main topics of the first global report, the qualitative research for the second report aimed to identify the main factors of good practices, that are in line with the CRPD, to ensure the participation and inclusion of persons with deafblindness in society. The qualitative research explored key findings on best practices by looking at basic factors based on existing knowledge from the first global report and avoided developing detailed technical models for each topic.
Research methods included:
– A literature review of over 100 secondary sources, including articles, reports, guides, case studies, briefings, and press releases on best practices for persons with deafblindness supplied by WFDB members and partners
– A survey of practitioners and persons with deafblindness on best practices, focusing on key gaps emerging from the literature review
– Key informant interviews to develop case studies and short features on core topics.
Sources were included in the review if they were written in English or if they could be reasonably reviewed using online translation technology. Good practices were assessed and defined using human rights standards and principles in the CRPD. Practices and approaches that did not comply with the CRPD were excluded from this report. In some cases, practices that were in the pilot stages were included to demonstrate innovative approaches to advance the rights of persons with deafblindness. WFDB recognises that pilot approaches included in this report will likely require further adjustments to refine the practice.
Most of the literature for the qualitative research consisted of NGO and OPD programmatic reports, articles, and documents, rather than scientific studies. Many of the academic papers were unpublished, and scientific studies often provided data on small numbers of persons with deafblindness. These challenges are due largely to the lack of research conducted on interventions and good practices for persons with deafblindness – a group that is often overlooked in research. A caselaw review was also conducted, which explored international human rights mechanisms. However, there were no significant cases of persons with deafblindness within the UN human rights complaints system.
The survey was circulated to WFDB members and partners, including Deafblind International (DBI) members, Sense International, International Disability Alliance’s (IDA) email list, and members of the International Disability and Development Consortium (IDDC) in early 2022. This resulted in 165 responses from 42 countries[i] with a breakdown of 91 responses from upper-income countries, 35 responses from upper middle-income countries, 33 responses from lower middle-income countries, and 6 responses from lower- income countries. The data from each country was insufficient to determine the situation in individual countries or regions and came largely from upper and upper middle-income countries. However, the survey data provided information on broad trends across personal experiences, particularly on key gaps in services, and provided insight into the main challenges that persons with deafblindness face.
The quantitative research explored the situation of children ages 2-17 years old across 36 countries and sought to answer the following questions:
The research analysed data from UNICEF’s Multiple Cluster Indicator Surveys (MICS), which have been conducted since the 1990s in 118 countries. The MICs have increasingly used the Washington Group-UNICEF Modules for Child Functioning for measuring disability in children who are 2-17 years. For the Washington Group-UNICEF Child Functioning Modules, the child’s caregiver is asked about the level of difficulty that their child faces in doing daily activities, including seeing, hearing, walking, remembering/concentrating, communicating, and completing self-care activities. For most questions, there are four responses: no difficulty, some difficulty, a lot of difficulty, and cannot do. In total, 36 country surveys have used the Washington Group-UNICEF Child Functioning Modules, and this report uses data from these 36 countries to explore the situation of children with deafblindness. Combined, the surveys contained information on over 442,000 children, and the indicators aligned to track some Sustainable Development Goals.
Annex 1 describes the prevalence or how common deafblindness is in each country. It is important to note that the sample size of each MICs dataset was often too small to explore the lived experience of children with deafblindness (e.g., education and health outcomes ) at the national or regional level. Consequently, the quantitative analysis used pooled samples across countries to achieve a sufficient sample size. Although this data provides valuable insight into the experiences of children with deafblindness across 36 countries, it is not suitable for analysis between countries.
Some of the indicators used in MICS may not fully capture the experiences of children with deafblindness. For example, violent discipline was captured through caregivers’ responses rather than children’s responses, which likely results in underreporting. Furthermore, literacy and numeracy were determined through children performing tasks based on written materials, which are usually not accessible for children with deafblindness. Finally, the Washington Group-UNICEF modules on child functioning are only suitable for children aged two years or more, and indicators for younger children, such as breastfeeding or immunisations, were not possible to calculate, as the data is not available. It is also not known how common deafblindness is in children younger than two years.
On 27-28 October 2022, WFDB held a workshop on the 2nd Global Report in Kenya to bring over 35 WFDB members and persons with deafblindness together from across the globe to discuss the draft report, including good practices and lived experiences of persons with deafblindness in line with the CRPD. The technical workshop served as a validation and consultation process, as well as provided an opportunity for WFDB members to build connections between regional and national OPDs of persons with deafblindness. Finally, it increased the understanding of good practices showcased in the report and exemplified how the report could be used as an advocacy tool.
This report provides an executive summary of key messages and findings. The introduction builds on the work of the first global report, identifies major environmental shifts, explains the methodology of the research conducted, provides an explanation of the diversity of persons with deafblindness, and captures WFDB’s findings on the prevalence of deafblindness.
The main findings of the research are organised into two sections:
In each of the chapters presenting the main findings, the problem or situation of persons with deafblindness is briefly outlined, and where applicable, quantitative data analysis is provided. The findings focus on the solutions or key measures to address the situation, link to relevant CRPD provisions, and highlight good practices from literature reviews and case studies, in order to provide links to relevant preconditions for inclusion, and practical recommendations. The voice of persons with deafblindness is included where data has been collected from the survey or key informant interviews. The report concludes with a summary of recommendations.
The report is aimed at providing practical advice on formulating legislation, policy, programmes, administrative procedures, and services for persons with deafblindness. However, many of the barriers as well as the solutions reflect the experiences of persons with disabilities in general and the wider approaches to ensure disability inclusion as a whole, in addition to recommendations specific to persons with deafblindness. Therefore, the report provides insight into how disability inclusive approaches can be more inclusive of persons with deafblindness and promotes a broader message about disability inclusion across all groups.