Deafblind people’s experiences of accessing social care

For World Sight Day 2021, we look at what Deafblind people have said about agency, communication, and social care, and what needs to change.

The term “deafblindness” requires some detailed unpacking. Broadly, there are two main categories of deafblindness; congenital and acquired. Congenital deafblindness means that the condition occurs from birth, or from before the human infant establishes language. Acquired deafblindness means the condition occurred after language was established, often in middle age in the case of Usher Syndrome (this link will take you away from our website), or in elderly life. In the case of both congenital and acquired deafblindness, an individual is considered deafblind if either their sight or hearing is unable to compensate for the other and the severity of the condition is such that it impacts that person’s ability to communicate, gather information and orientate within their environment.

Currently, Scotland and much of Europe does not have a clinical definition for the term deafblindness. Unfortunately, this can lead to misdiagnoses of Autism Spectrum Disorder (ASD) or learning difficulties for congenitally deafblind people, and a lack of skilled communication partner competence for acquired deafblindness.

Deafblind people will often require information, receive it and express themselves communicatively through what is called the “bodily-tactile modality”. For acquired deafblindness, skilled practitioners called “Communicator Guides” use deafblind manual, social haptic communication or tactile BSL. This can be a challenging process when attempting to translate complex or technical information. In terms of social care and Self-directed Support (SDS), there is a range of information that people need to have in order to make informed choices and decisions. Given the limited awareness of – and investment in – deafblind communication in Scotland, it is likely that many deafblind people are not being fully informed of their choices in terms of care and support.

The deafblind population is a very individualised and diverse group. Some individuals may have enough residual hearing or vision to gather relevant information; however this will not be the case for all people. In all cases, skilled communication partners and inclusive practice sit at the heart of enabling people’s agency within the process of SDS.

As part of the ALLIANCE and Self Directed Support Scotland’s national research project about people’s experiences of Self-directed Support (SDS), ‘My Support My Choice’ (MSMC), we heard from 17 people who were deafblind.[i] This small but varied sample group demonstrated several potential areas that can improve the SDS experiences of deafblind people in Scotland.

Overall, 75% of deafblind respondents indicated that SDS had improved their experiences of social care. However, as with deafblind people’s experiences of communication more broadly, many people said they did not get enough information about their options when it came to SDS. For example, only half the deafblind respondents reported that all four SDS options were discussed with them during their needs assessment, with the remainder either receiving some or no information about their choices, or left unsure of their options. Effectively, this left some deafblind people unable to make informed choices about their care and support.

Several deafblind participants reported positive communication experiences with social work professionals; 71% indicated that all their questions were answered, and 66% indicated that they were either happy or very happy with their conversations with social work professionals. One person summarised their experience as follows:

“The social worker listened to me and explained things well, although I was very anxious about anything other than family supporting me.”

A different participant said, “I needed communication support, and this was available”. Others indicated that they appreciated social workers taking extra time to ensure that they understood and agreed with specific details around their care plans. People praised the work of dedicated sensory loss teams in their area and spoke eloquently about the positive impact of good communication and access to SDS on their lives. These examples of good practice are welcome.

However, around a third of deafblind people indicated that they were not happy with their communication with social work. Some reported that they were not given information about their budgets, which led to them being unable to make informed decisions about their care and support. One person summarised their experience by saying that they “felt very misunderstood with my condition and needs”. Another said that, “I was not told what my budget would be so neither my partner or myself could look at options.”

One person outlined the need for more training for social work professionals in how to communicate with deafblind people. They highlighted that even simple practices like slowing down speech patterns can assist people with hearing loss.

In responding to these people’s experiences there is a need for greater awareness raising and understanding of deafblindness across all sectors. In clinical terms, deafblindness can be measured in the loss of acuity to vision or hearing – however, it is the resulting social and emotional barriers that for many are most impactful. The Nordic definition of deafblindness (available on the Nordic Welfare website (this link will take you away from our website)), adopted by the World Health Organisation, is a useful navigational tool. This follows the social model of disability, placing the disabling barriers for the individual not on the condition, but rather on a societal inflexibility. There is a need for Scotland to adopt and work towards a similar definition for deafblind people.

The unique experiences of deafblind people in terms of age of onset, the severity of the condition and other factors including co-morbidities and age-related conditions requires skilled competence within the workforce. The BSL (Scotland) Act makes provision for deafblind people However, more is needed in terms of recruitment and development of skilled Communicator Guides, particularly within the contexts of education and social care.

Lastly, early identification is critical. With acquired deafblindness, it can be incredibly complex for people to transition from being a BSL user into using tactile BSL, or from an English user into deafblind manual. It is through the retention of language that people retain agency. It is possible to work with individuals to transition and develop these skills preventatively, and work with people while some sight and hearing reside. With congenital deafblindness, early identification, screening and education are paramount in terms of language acquisition and communication development. No human is born as a language user, and we are all scaffolded into language by competent communication partners. Evidence suggests that this is also the case for congenitally deafblind children, and that their success in terms of developing language, and understanding and influencing the world and their place in it, is based on the skills and availability of communication partners within early life and beyond.

To find out more about My Support, My Choice and to read the reports, visit: https://www.alliance-scotland.org.uk/health-and-social-care-integration/self-directed-support/msmc/.

To find out more about World Sight Day, visit:  https://www.who.int/news-room/events/detail/2021/10/14/default-calendar/world-sight-day-2021 (this link will take you away from our website).

[i] Definition of deafblind in MSMC: selected both “Blind or visual impairment” and “Deaf or hearing impairment” when asked about disabilities/impairments.

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