Deafblindness – the psychosocial impact makes it core social work

Published by Professional Social Work magazine, 2 March, 2021

‘Deafblind my arse’. Such was the disbelieving response of a fellow train passenger to 16-year-old Saule as she tried to explain that her sister, Karolina, was deafblind, and that was why she had temporarily lifted her mask: to enable Karolina to lip-read.

It was the final insult at the end of an outburst of verbal abuse, captured on video and posted online by The Guardian at the end of July. In response to the Covid-19 pandemic, wearing face coverings on public transport became compulsory last June, but the regulations make it clear that there is an exemption for someone who is travelling with or assisting another person who relies on lip-reading.

The distressing experience of Saule and Karolina, and that of other disabled people, has led charitable organisations to call on the government to actively promote public awareness about those exempt from the face covering regulations. Yet, Karolina and Saule’s experience highlights it is not only the regulations that are often unknown or misunderstood but also deafblindness itself.

As a severe and complex condition, with different causes, deafblindness affects people in different ways, though all share impairment in, or total loss of, both vision and hearing. Sometimes termed dual sensory loss, it can be a congenital or acquired condition. 

Though there are significant differences between these, it is more complex than a simple binary distinction might suggest. Synergy is a unifying feature: the combination of sensory impairment results in a unique experience, more than the existence of hearing impairment/deafness and visual impairment. Deafblindness prevents a person from using one sense to compensate for impairment in the other. Therefore, even a relatively minor impairment in one of the distance senses has a significant impact on function when it exists in combination with another.

This complexity contributes to the misunderstanding of deafblindness. Ignorance, comparatively low prevalence rates, and the invisibility of the condition are also known contributory factors. It is not only the condition itself that is misunderstood, but also the extent of an individual's deafblind impairment, its nature and impact, the behaviour of deafblind people, and their linguistic and communicative methods and needs.

In seeking to address such misunderstanding, and in recognition of the birth month of Helen Keller – author, activist and the first deafblind person known to be educated to degree level – June is designated Deafblindness Awareness month. But unlike other awareness days, weeks and months, this one comes and goes with little or no comment from professional social work organisations.

This is curious, when one considers the known psychosocial impact of deafblindness; effects often more significant than audiological and ophthalmic matters, and known to adversely affect quality of life. 

Deafblindness impacts a person’s communication, mobility and access to information. Such functional difficulties, rather than clinical assessment of hearing and vision, are central to the definition of the condition adopted by the Department of Health and Social Care. 

It can challenge a person’s independence, including their ability to complete daily activities, and can affect family, parental and personal relationships, one’s sense of identity and social participation. Deafblind people can encounter high levels of social isolation and experience ongoing loss. It is unsurprising therefore, that research suggests they are at increased risk of emotional, psychological and mental health problems.

Touch is deafblind people’s most important sense. It enables communication and the expression of friendship, emotion and connection. Yet it is also a potential source of vulnerability. The nature of physical contact can be misinterpreted by the deafblind person or their interlocutor. Deafblind children become accustomed to much higher levels of touch compared to their hearing-sighted peers. How do they know when that touch is inappropriate or abusive? 

Deafblind people may also be vulnerable to physical harms or injury, associated with accidents and falls, being exploited or a victim of crime. Nevertheless, the identification of deafblind people as a vulnerable group has also resulted in persistent misunderstanding, a perception of incapability and the neglect of deafblind people’s agency, creativity and ability, resulting in overprotection and control.

Surely such matters are of concern to social work? Relationships, wellbeing, communication, social participation, and vulnerability: these are mainstream concepts in social work theory and practice.

Since the late 1980s, public services have increasingly recognised the unmet needs of deafblind people. It was the untimely death of the deafblind woman Beverley Lewis, that prompted Gloucestershire social services to establish an ‘Adults at Risk Unit’ and develop adult protection policy and procedures. The particular challenges Covid-19 has posed to deafblind people is also highlighted in this article.

A call to the social work profession

The Care Act 2014 and associated provisions place explicit obligations towards deafblind people upon English local authorities. Deafblindness is mentioned more than 20 times in the Care and Support Statutory Guidance.

Since these provisions came into force, there has been substantial progress in meeting deafblind people’s needs, and local authorities are supporting increasing numbers of staff to gain qualifications and become deafblind assessors. 

The latter is welcome, as the need for increased training on deafblindness among social care professionals has been recognised for some time. However, there is still much more to do. A survey by charity Sense of deafblind people’s experiences, highlights ongoing barriers including limited awareness among social workers of the legal duties owed to deafblind people; difficulties gaining access to specialist assessment and support; completion of assessments by unsuitably or non-qualified staff and the non-involvement of specialists in care and support planning, sign off and reviews.

The Social Services and Wellbeing (Wales) Act 2014 similarly places duties upon local authorities. Explicit reference to local authorities’ responsibility to provide appropriate care and support for deafblind people is evident in the accompanying Code of Practice. 

The duties are similar to those in England, but differences are evident. In Wales, the requirement for local authorities to register those who “have sight and hearing impairments, which in combination, have a significant effect on their day to day lives” is in the primary legislation.

Deafblindness is a minority impairment. Nevertheless, while determining the prevalence of the condition is complex, researchers agree it increases with age. The number of deafblind people is therefore predicted to grow as the population ages. 

This demographic trend, and the legal provisions as described, suggest that social workers should develop their knowledge of deafblindness and build their capacity in this field. Our call on the profession to do so is also informed by our belief that social work has much to contribute to the wellbeing of deafblind people. 

In view of the psychosocial difficulties associated with the impairment, social work’s effectiveness in combining practical and emotional support suggests it’s ideally placed to support this population. Additionally, the complexity of the condition means deafblind people often require a multi-disciplinary response: social work skills of co-ordination and local community-based knowledge may ensure its helpfulness. Finally, as a strengths and rights based profession, social work has the potential to address the misunderstanding of deafblindness and challenge the perception of deafblind people as incapable. 

This seems anything but niche to us.

Tips for social workers when working with deafblind people

Recognise and identify

Deafblindness often goes unrecognised, particularly among older people with late-life acquired deafblindness, and those with learning disabilities. Ensure you are familiar with the Department of Health and Social Care definition of deafblindness and use tools to help identify the condition, such as the Sense produced checklist Fill the Gaps.

Acknowledge the impact

Deafblindness may be perceived as a benign consequence of old age, and thus downplayed by older people, care workers, and family. Similarly, it can be overshadowed by other co-morbidities or impairments. Remember that even a relatively mild sensory impairment can have a significant impact when in combination with another. Acknowledge and assess the psychosocial impact of deafblindness, which is often more significant than the clinical features and may adversely affect wellbeing.

Legal literacy

In the Care Act’s Care and Support Statutory Guidance for England, deafblindness is mentioned more than 20 times. Some legal provisions are specific to deafblind people, whilst in others the needs of deafblind people are considered in relation to mainstream social care processes. Ensure you are legally literate and aware of the actions local authorities are required to take in relation to social care for deafblind children and adults. 

Be creative

Transcend care management processes and engage in creative direct work. Recognise that there are rarely ‘off the peg’ solutions and draw on your problem-solving skills. Avoid low expectations, recognise deafblind people’s potential and remember that low cost, simple interventions can be highly effective.

Make use of ‘mixed’ support: traditional and specialist

Consider use of personal budgets and direct payments to facilitate flexible and responsive support, drawing on ‘traditional’ and specialist services. Explore the range of technologies that can support deafblind people, but do not underestimate the need for one-to-one human contact.

Refer on and work collaboratively

Deafblind adults commonly need multi-agency support. Work collaboratively with colleagues in health (e.g. hearing therapists, low vision therapists), and education (specialist teachers), and with communication professionals, technical officers for the deaf, rehabilitation officers, specialist care providers and specialist organisations.

Jacqui Bond has 20 years experience working within specialist sensory teams across South Wales. She is a member of the All Wales Mental Health and Wellbeing group for Deaf People

Liz Duncan is head of learning and research for Deafblind UK and is deputy chair of the Deafblind International Acquired Deafblindness Network. She has more than 25 years’ experience in the deafblind field

Dr Peter Simcock is senior lecturer in social work at Birmingham City University and chair of the Deafblind International Acquired Deafblindness Network