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.
Preconditions are the essential building blocks or “foundational aspects that are indispensable in addressing the requirements and views of persons with disabilities and should be considered in public policy- making and programming across all sectors”. More specifically, this section considers the preconditions necessary for inclusion for persons with deafblindness, as a distinct group of persons with disabilities, to support their access to services across all sectors.
The twin-track approach for disability inclusion requires disability-specific measures to meet the requirements of persons with disabilities, as well as consistent and systematic mainstreaming of disability across all programmes, policies, and processes.
Persons with deafblindness are often excluded because of their disability. A common misperception is that persons with deafblindness cannot be helped, supported, or reached because they will not understand the situation or because there is a presumption of inability.
Accessibility is a right that enables independence and participation of persons with disabilities on an equal basis with others and often refers to products, systems, services, environments, and facilities that are used by people with diverse requirements.
Disability-specific services are specially designed community-based services to meet the requirements of persons with disabilities, including persons with deafblindness.
Participation of persons with disabilities is a cross-cutting precondition to ensure the enjoyment of all their rights as well as being a standalone right.
The lack of legal recognition of deafblindness by States leads to the invisibility of persons with deafblindness in statistics, research, policies, programmes, and mainstream services.
Disability mainstreaming is a comprehensive and holistic approach to removing barriers and improving access and opportunities for persons with disabilities on an equal basis with persons without disabilities. This section considers the measures required by persons with deafblindness, as a distinct group of persons with disabilities, across mainstream services and policies aimed to reach the public.
Children with deafblindness have a right to an inclusive, free, quality education to meet their full potential and cannot be prohibited from education due to their disability, regardless of their support needs.
Persons with deafblindness have a right to the highest attainable standard of health, including access to affordable, quality health care, community access to health services, and access to health specialists, including sexual and reproductive health.
These good practices should be applied across different areas of health and may require further tailoring of interventions to ensure that persons with deafblindness are able to access services.
Persons with deafblindness have the right to work on an equal basis with others, which includes the opportunity to gain a living through work that is freely chosen or accepted in the labour market.
Persons with deafblindness have a right to an adequate standard of living for themselves and their families, including food, housing, water, clothing, and the continuous improvement of living conditions.
Participation is a principle of the CRPD as well as a standalone right because persons with deafblindness who experience communication barriers, are often excluded from making decisions that affect them.
Social life is an integral part of the human experience and essential to well-being and the capacity to thrive.
There was a lack of literature in the literature review on violence, exploitation, and abuse of persons with deafblindness, and the quantitative research did not show significant findings on the supervision of children with deafblindness.
Persons with deafblindness must be protected in situations of risk, including armed conflict, humanitarian emergencies, and natural disasters.
The recommendations in this report are numerous. However, broken down into essential components for individual services and policy areas, it creates a roadmap for OPDs of persons with deafblindness and their allies to advocate for concrete change and to overcome the question of what works for persons with deafblindness.
The initial steps to bridge the gaps that were outlined in WFDB’s first global report remain relevant, and this report builds on those recommendations to identify four urgent priorities to ensure persons with deafblindness are not left behind:
Establish international, national, and sub-national recognition of deafblindness as a unique and distinct disability with its own specific challenges, barriers, and support and inclusion requirements
Establish a system for information resources and continuous training on deafblindness for essential frontline workers (e.g., health, rehabilitation, education, social work, etc.) to understand how to identify, rehabilitate, educate, and support persons with deafblindness and how to adapt services as good practice models evolve
Establish publicly funded live assistance forpersons with deafblindness as an essential service, in particular trained teaching assistants in educationalinstitutions and interpreter-guide/Deafblindinterpreting services for all persons with deafblindness that require it
Provide funding for further research and data to support an evidence base of CRPD-compliant disability-specific anddisability-mainstreamed services with the active participation of persons with deafblindness and their representative organisations.
This project was coordinated by the WFDB, under the supervision of WFDB former President, Geir Jensen. The qualitative research and report compilation was led by senior independent consultant, Bailey Grey, and the quantitative research was led by Morgon Banks and Calum Davey at International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine. Technical support was provided by Lucía D’Arino (WFDB Programme Advisor), Rune Jensen (former WFDB Policy Advisor), Sanja Tarczay (current WFDB President), Carina Olsen (Consultant), Priscille Geiser and Federico Martire (International Disability Alliance), Christopher Woodfill (WFDB Regional representative for North America), Alison Marshall (Sense International), and Sara Rotenberg (University of Oxford).
We would like to thank everyone that contributed to the report, in particular, WFDB members, Deafblind International members, and Sense International for sharing literature sources and participating in WFDB’s survey. We also appreciate the contributions made by WFDB board members and participants during the WFDB technical meeting in July 2022 in Geneva, Switzerland, as well as the participants of the WFDB regional workshop in October 2022 in Nairobi, Kenya.
The contributors to the case studies were essential to the creation of this report, and are listed below:
Sonnia Margarita Villacrés Mejía
The report was made possible thanks to the overall organisational and technical support of the International Disability Alliance (IDA), and the Norwegian Association of the Deafblind (FNDB), with the financial support from the Norwegian Agency for Development Cooperation (NORAD) and Norwegian Ministry of Foreign Affairs (NMFA), as well as the SHAPES project which received funding from the European Union’s Horizon 2020 research and innovation programme, under grant agreement No 857159.
The information and views set out in this background document are those of the World Federation of the Deafblind (WFDB) and do not necessarily reflect the official opinion of the International Disability Alliance (IDA), the Norwegian Association of the Deafblind (FNDB), the International Centre for Evidence in Disability (ICED) at the London School of Hygiene and Tropical Medicine (LSHTM).