Conclusions and Recommendations

Building on the first global report, WFDB has expanded quantitative analysis of the situation of persons with deafblindness, focusing on children with deafblindness using data from the MICS, and advanced the dialogue on what works for persons with deafblindness in line with the CRPD across a wide range of policy areas.

There has been progress in raising awareness on the situation of persons with deafblindness with the first global report. However, governments, funders, NGOs, OPDs, and other development stakeholders must develop a firm grasp of the concrete measures and interventions that work for persons with deafblindness. Although more robust research is required across all areas, this second global report provides these stakeholders with good practices and inspiration for improved services that are inclusive of persons with deafblindness.

Persons with deafblindness are frequently excluded from disability-specific and mainstream services due to a vicious cycle of stigma and misperceptions about their capabilities, lack of access to interpreter-guide/Deafblind interpreting services and accessible information, low- incidence rates combined with high support needs, complexity of deafblindness interventions, lack of technical understanding and resources, and isolation. This report seeks to improve the positions of persons with deafblindness within the disability movement as well as within broader mainstream services.

A systematic review of the preconditions for disability inclusion is key to ensuring mainstream services are inclusive of persons with deafblindness. Deafblindness must be accurately recognised to establish deafblindness-specific interventions and services. A global mechanism to address systemic gaps in access to live assistance, including interpreter-guides/Deafblind interpreters, in solidarity with other groups of persons with disabilities, could generate the momentum that OPDs of persons with deafblindness may not be able to achieve on their own. However, interpreter-guide/Deafblind interpreting services may be difficult to implement if rehabilitation services are not in place. Furthermore, rehabilitation services may not include persons with deafblindness if health and rehabilitation workers do not have access to information and training resources on good practices for persons with deafblindness in local languages.

This overlapping nature of the preconditions creates planning challenges. However, this should not lead to inaction or inertia. As many of the case studies demonstrate, pilot programmes that systematically address the preconditions combined with good practices of mainstream services for persons with deafblindness are a good starting point.

The literature review revealed that there are many good practices to facilitate the inclusion of persons with deafblindness being used in diverse settings across the globe. However, WFDB’s survey highlighted a lack of consistency in implementing good practices across countries and regions, indicating that good practices are often restricted to small projects in a limited number of countries. In addition, this report did not review or analyse practices that are not aligned with the CRPD, such as segregated education, employment, and residential services or services that exclude or disempower persons with deafblindness, which is a major concern of the deafblind community, as many outdated and bad practices need to be terminated and replaced with CRPD-compliant services and approaches.

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:

 

  1. 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

 

  1. 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

 

  1. Establish publicly funded live assistance for persons with deafblindness as an essential service, in particular trained teaching assistants in educational institutions and interpreter-guide/Deafblind interpreting services for all persons with deafblindness that require it

 

  1. Provide funding for further research and data to support an evidence base of CRPD-compliant disability-specific and disability-mainstreamed services with the active participation of persons with deafblindness and their representative organisations.

 

Persons with deafblindness are a broad and diverse group that require reasonable accommodations for individuals, accessibility standards as a group applied across all services and facilities, tailored deafblindness-specific services, as well as inclusion in mainstream services. These are the key factors for ensuring social inclusion, participation, independence, and autonomy.

 

[i] UNPRPD, The preconditions necessary to ensure disability inclusion across policies, services, and other interventionshttps://unprpd.org/site/default/files/library/2020-08/Annex%202%20UNPRPD%204th%20Funding%20Call%20Preconditions%20to%20disability%20inclusion%20ACC.pdf, accessed May 2022, p. 4.

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