Disability-specific services and disability mainstreaming are necessary components of a twin-track approach. Disability-specific services are specially designed community-based services to meet the requirements of persons with disabilities, including persons with deafblindness. These services may be arranged in a variety of ways and focus on the following elements:
These services may be organised and arranged in different ways and may be embedded within mainstream services, depending on the national and local situation. A robust system of disability-specific services enables persons with disabilities to be independent and to participate in the community. It also strengthens their access to mainstream services, such as education, health care, emergency, social protection, employment programmes, etc.
Disability-specific services, whether run by the state, civil society, or private sector, require sustained funding. However, there is a strong economic argument for investing in disability-specific services, which enhances the inclusion and independence of persons with disabilities, thus making them less reliant on others. Because persons with deafblindness are a small group, it is often assumed that they require only the minimum allocation of the resources earmarked to support disability services. This is an underestimation of the support needs and diversity of the group. Deciding resource allocation based on assumptions about overall social impact as a group is a political choice and a major barrier to ensuring supports[i].
Importantly, many countries lack disability-specific services, including deafblind-specific services, to support for persons with deafblindness altogether. This is often due to a lack of knowledge and skills of professionals working with persons with disabilities and persons with deafblindness. More specifically, there is often no information resource centre or hub on deafblindness available in the country that provides information materials or training courses on deafblindness in local languages, which perpetuates the gap in developing services and supports for persons with deafblindness[ii].
A disability resource centre or hub is an independent organisation or network of organisations with the primary focus of gathering and providing information and technical resources to persons with disabilities, families, and professionals working with persons with disabilities across a range of services. These resources may include a resource library, an online repository of information and technical guidance, training courses and other learning events, and links with technical experts, ensuring that information resources reflect the latest research on impairments and technical support on good practices, including clinical practices, educational approaches, home-based supports, etc. A resource centre or hub on deafblindness may be run by OPDs of persons with deafblindness, other OPDs, parents’ groups, practitioner groups, NGOs, or a combination of partners, and some may provide disability-specific services for persons with deafblindness in addition to serving as a centre for information and technical resources.
The literature review revealed that several middle-income countries lacked resource centres on deafblindness, which led to costly alternatives or the exclusion of persons with deafblindness from disability-specific services. For example, a rehabilitation professional from the United Kingdom was flown into Indonesia to provide vital rehabilitation training to adults with deafblindness who were setting up an emerging OPD. They could not communicate with each other or function as an OPD without this vital rehabilitation support. This is because Indonesia lacks a central resource centre on deafblindness to train existing rehabilitation professionals or to provide basic information to persons with deafblindness[iii]. In other words, disability-specific services for persons with deafblindness cannot exist without the technical knowledge and resources.
[ii] Boswell, Emma. “Trip to Indonesia”, DBI Review, Issue 63, April 2020, p. 59 and Exxat, Amal. “Advocating for the Right to Education for Learnings with Deafblindness and Multiple Disabilities in Egypt”, DBI Review, Issue 61, p. 5; Ezzat, Amal, “Advocating for the Right to Education for Learners with Deafblindness and Multiple Disabilities in Egypt”, DBI Review, Number 61, July 2018, p. 5-8.
[iii] Boswell, Emma. “Trip to Indonesia”, DBI Review, Issue 63, April 2020, p. 59 and Exxat, Amal. “Advocating for the Right to Education for Learnings with Deafblindness and Multiple Disabilities in Egypt”, DBI Review, Issue 61, p. 5; Interview with Dwi Ariyani from Disability Rights Fund on support to OPDs of persons with deafblindness in Indonesia, 11 March 2022.
A ‘standout organisation’ (i.e., a leading national organisation, OPD, parents’ group, research centre, or service provider) is often a driving force in establishing a resource centre or hub on deafblindness, which enables disability professionals and service providers to develop a community of practice and a pool of technical experts, who play a key role in providing disability-specific services for persons with deafblindness. Persons with deafblindness and family members have historically been at the forefront of driving the establishment of such hubs. If there is no obvious organisation to lead an initiative to establish a resource centre, an umbrella group comprised of equal partners can be established to coordinate and share learning, helping to generate a ‘whole country’ response to support persons with deafblindness[i]. However, this type of initiative requires funding as well as coordination and capacity supports.
For some countries, especially smaller low-income countries, a cross-border approach of working with persons with deafblindness, families, and professionals from neighbouring countries or countries with historical or linguistic ties could help to facilitate information sharing, training expertise, and practical support to establish a resource centre.[ii] This could be established through a formal or informal partnership with resource centres that have technical knowledge on methods to support persons with deafblindness, noting that multiple, simultaneous partners could provide a range of technical support. In addition, it is a good practice to include the national deaf association and national sign language users, since sign language is often used by some persons with deafblindness and because sign languages vary across countries and regions. For example, in Rwanda, an umbrella group of NGOs, OPDs, and other stakeholders worked with the Association of Swedish Deafblind (FSDB) to develop a Rwandan Tactile Sign Language[iii].
Another good practice is to recognise disability-specific services for persons with deafblindness in legislative and policy frameworks and to adopt guidelines and criteria to regulate the delivery of assistance and support services with the consultation of persons with deafblindness[iv]. For example, in Peru, the law that recognises deafblindness as a distinct disability includes a provision on the care of persons with deafblindness, including the requirement of public and private entities to provide interpreter-guide/Deafblind interpreting services free of charge[v]. While this service is still being developed in Peru, this demonstrates a good practice in securing essential disability-specific services for persons with deafblindness. It is unlikely that this service would have been developed without this legislation. It is, therefore, important to identify groups, like persons with deafblindness, who are the most marginalised and to expressly name them and their requirements repeatedly in public policies and programmes to ensure that they are not excluded altogether[vi].
Disability-specific services for persons with deafblindness will vary for each individual. For example, one person may require interpreter-guide/Deafblind interpreting services and several assistive devices, whereas another person may only require assistive devices and training on how to use them. Therefore, it is important to provide a range of disability-based services, which in practice should be tailored to each individual.
[i] DeafReach, what would be the next step? Action Research on Discovering Deafblindness within the wider Rwanda Disability Context, October- November 2019, p. 36.
[iv] United Nations Special Rapporteur of the Human Rights Council on the Rights of Persons with Disabilities, report on disability inclusive policies, A/71/314, 9 August 2016, para. 49.
[v] Sense International Peru, Peru Promotes Training of Interpreter Guides for Persons with Deafblindness, Article for DBI Ibero-Latin American Network, 3 August 2021.
[vi] United Nations Special Rapporteur of the Human Rights Council on the Rights of Persons with Disabilities, report on disability inclusive policies, A/71/314, 9 August 2016, para 30.
OPDs and NGOs
Donors and Research Institutes