To obtain the maximum independence, full physical, mental, social, and vocational ability, and full inclusion and participation in all aspects of society, persons with disabilities have a right to habilitation and rehabilitation[i]. Habilitation and rehabilitation are a set of interventions designed to optimise the functioning of individuals with impairments in interaction with their environment. Habilitation aims to assist individuals who acquire impairments congenitally or in early childhood to learn how to better function with these impairments. Rehabilitation aims to assist those who acquire an impairment so that they can relearn how to perform daily activities and regain maximal function[ii]. For the purposes of brevity, the term rehabilitation used in this report refers to both rehabilitation and habilitation under Article 26 of the CRPD.
Deafblindness – whether pre-lingual or post-lingual – often results in social isolation and dependence on others because of the barriers to communicating, accessing information, learning, moving around, and remembering and because it is difficult for the senses to compensate for one another. One of the biggest barriers is communication, which affects all aspects of social life, including education and learning, work, family life, social interactions, access to services, access to information, and relationships. Language acquisition is an essential element for those with pre-lingual deafblindness in the early intervention stages. Similarly, persons with deafblindness who have not benefited from early intervention may still require language acquisition support. Daily life skills, such as feeding, bathing, dressing, and using the toilet, may also be difficult for some persons with deafblindness, particularly pre-lingual persons with deafblindness because young children learn these daily tasks through watching and listening to others. The impact of isolation and dependence can also result in emotional and mental health difficulties for persons with deafblindness.
Without rehabilitation services, persons with deafblindness either do not learn how to fully communicate or develop a type of ‘home sign’, often called ‘adaptive signs’, that are agreed by family members or individuals who come in contact with them[iii]. Without early intervention, children with pre-lingual deafblindness are unable to communicate with their parents and can experience significant developmental delays.
Rehabilitation services, often referred to as community-based rehabilitation (CBR), are services specially designed for persons with disabilities. They are cross-disciplinary and cross-sectoral and are delivered across a range of health and social service delivery models, including through hospitals and health clinics, schools, NGOs, home-based supports, businesses, etc. They are also considered part of Universal Health Coverage (UHC)[iv], and thus are essential for persons with disabilities. CBR services in many low- and middle-income countries are inadequately staffed and underfunded[v].
The WFDB survey revealed that where CBR services for persons with disabilities exist, they often lack the deafblindness-specific elements, namely professionals from a range of disciplines who are trained on deafblindness and a focus on developing communication methods combined with social interaction to improve and support both communication and social engagement for persons with deafblindness. Moreover, rehabilitation for persons with deafblindness often focuses on the impairment instead of the environment and the major areas of life, such as work, family, and social life[vi].
[i] Convention on the Rights of Persons with Disabilities, A/RES/61/106, 13 December 2006, Article 26. “Habilitation refers to a process aimed at helping people gain certain new skills, abilities, and knowledge. Rehabilitation refers to regaining skills, abilities, or knowledge that may have been lost or compromised as a result of acquiring a disability, or due to a change in one’s disability or circumstances.” Sourced from http://hrlibrary.umn.edu/edumat/hreduseries/TB6/pdfs/HRYes%20-%20Part%202%20-%20Chapter%209.pdf, accessed May 2022. For the purposes of this report, rehabilitation services include habilitation services.
[ii] United Nations Special Rapporteur of the Human Rights Council on the Rights of Persons with Disabilities, Report on habilitation and rehabilitation under article 26 of the Convention on the Rights of Persons with Disabilities, A/HRC/40/32, 21 January 2019, para. 4.
[iii] Deasy, K. & Lyddy, F., “Potential for Communication in Individuals Who Are Congenitally Deafblind: It’s in the Eye of the Beholder”, The Irish Psychologist, Vol. 35 No. 8, March 2009, p. 205-210.
[iv] Bright, T., Wallace, S., and Kuper, K. “A systematic review of access to rehabilitation for people with disabilities in low- and middle-income countries”, International Journal of Environmental Research and Public Health, Vol. 15 Issue 10, 2165, 2 October 2018.
[v] Ibid.
[vi] National Centre on Combined Vision and Hearing Impairment / Deafblindness, Eikholt Annual Report, October 2021, p. 6.
CBR services should be flexible, person-centred (i.e., supporting the requirements of the individual), and available through the various stages of life adjustment. Empowerment, autonomy, independence, and social inclusion should be at the centre of rehabilitative approaches. The focus should be on the lived environment of the individual and not on the impairment (i.e., deafblindness) and should result in an individualised plan that is adjusted over time. Approaches will be different for each individual but may include:
Giving people a chance to learn, to discover, to choose – this is very important. If people think I cannot do something, they will not tell me or show me, and I will never know about it… I learned to roller skate and climb trees and fly kites. I was never told this is not for you… This is my message to all parents and teachers… You cannot know what a person is capable of. Have high expectations, understand their support, and push them to discover themselves.
– Zamir Dhale, Founder of the Society for the Empowerment of the Deafblind, India[ii]
Persons with deafblindness are best served by a team of cross-disciplinary rehabilitative professionals. It is useful for professional groups to establish and document good clinical or technical practices for working with persons with deafblindness, how they will work with other rehabilitative professional groups, and how they will work with other services, such as education, social work, social care, etc.[iii]. Rehabilitative professionals should have proper education, training, and qualifications, as well as continuing professional development, and should understand the following:
Importantly, it is good practice for rehabilitation professionals working with persons with deafblindness to directly communicate with persons with deafblindness, and not just observe or use interpreter-guides/Deafblind interpreters. This practice increases the rehabilitation professional’s understanding of the unique communication methods required for each individual.
For children with deafblindness, CBR must combine health, education, and rehabilitation services and should provide support and learning in the following areas:
Sensory stimulation toys specifically designed or selected for children with deafblindness can help to stimulate residual hearing and vision and help them to develop gestures and communication[vi]. Support for parents and family members should include information on deafblindness, emotional and practical life adjustments, communication methods, methods for ensuring peer support, and information on how children with deafblindness learn and develop since parents facilitate learning that is ordinarily observed by children without deafblindness. Services for parents need to be joined up, coordinated, and easy to navigate because without adequate, structured support, families face considerable burdens raising a child with deafblindness[vii].
For adolescents, CBR should focus on self-image, social interaction and development, personal relationships, transition into adult life, vocational training to enable employment opportunities, increased independence, autonomy, and decision-making. Young persons with deafblindness face considerable barriers to employment. Therefore, CBR should aim to prepare them for work and on how to seek employment, given the many barriers they face. Finally, young persons with deafblindness need to gain and/or increase their understanding of deafblindness in order to develop adaptive strategies for a changing environment[viii].
For adults, CBR should focus on how to access interpreter-guide/Deafblind interpreting services, charting their environments, maintaining employment (e.g., through vocational rehabilitation), setting or adjusting life goals, and personal relationships, while working with their existing network of family and friends. It is important to combine social interaction and communication as a comprehensive topic to strengthen the network around persons with deafblindness, rather than working on communication in isolation[ix].
For older persons, it is important to distinguish those who acquired deafblindness through ageing versus those who have deafblindness and have aged, as their needs will differ. CBR should provide information on how to adjust to life with deafblindness, how to embed deafblindness considerations and awareness into health care (e.g., doctors, carers, nursing homes, etc.), information strategies for strengthening the individual’s network of friends and family, access to interpreter-guide/Deafblind interpreting services and assistive devices, training on how to work with interpreter-guides/Deafblind interpreters and assistive devices, and information on daily life adjustments[x]. Social exclusion increases with age, and it increases with deafblindness, compounding the effects of ageing and deafblindness. Therefore, it is essential that CBR services support communication methods in combination with social interaction to prevent isolation.
[i] Goransson, Lena. Deafblindness in a Life Perspective: Strategies and Methods for Support, www.skane.se/dovblindteam, 2008, p. 49-50.
[ii] Dhale, Zamir. My life as a person with deafblindness, www.sedbindia.org, October 2021.
[iii] See, for example, Royal College of Speech and Language Therapists, Deafblindness – overview, https://www.rcslt.org/speech-and-language-therapy/clinical-information/deafblindness/#section-4, accessed May 2022.
[iv] Royal College of Speech and Language Therapists, Deafblindness – overview, https://www.rcslt.org/speech-and-language-therapy/clinical-information/deafblindness/#section-4, accessed May 2022.
[v] World Federation of the Deafblind, At risk of exclusion from CRPD and SDG implementation: Inequality and Persons with Deafblindness, https://wfdb.eu/wfdb-report-2018/, September 2018, p. 32.
[vi]Sense International, Sensory support for Isabela, https://senseinternational.org.uk/our-impact/isabela-s-story/, accessed May 2022.
[vii] Goransson, Lena. Deafblindness in a Life Perspective: Strategies and Methods for Support, https://nkcdb.se/wp-content/uploads/2018/11/Deafblindness-in-a-Life-Perspective.pdf, 2008, p. 63-83.
[viii] Ibid., p. 85-97.
[ix] Ibid., p. 109-127.
[x] Ibid., p. 143-161.
Governments
OPDs and NGOs
Donors and Research Institutes