Deafness and hearing impairments

Information and support for members of the D/deaf community, their families and carers.

Terms

You might have come across terms such as ‘Deaf’, ‘deaf’, ‘hearing impaired’, ‘profoundly or partially deaf’, or ‘hard of hearing’, and possibly more.  Deafness is often an invisible disability.

The terms above have been used by professionals, services, and people themselves to highlight the heterogeneity of the citizenship of such communities and diversity of their communication, language and culture. Some of them might present with multiple disabilities e.g., dual sensory impairment and additional needs, such as neurodiversity.

Deaf citizens

Deaf citizens (with a capital ‘D’) often suggest that they are profoundly deaf from birth and a British Sign Language (BSL) user. They are a subgroup of deaf people with a distinct language and culture. They are usually exposed early to the opportunity of their preferred language and social environment. Such affirmation of community, culture and language is depicted as ‘culturally affirmative’ perspective on Deaf people (Glickman N & Hall W 2019).

Small letter ‘d’ is used to describe the rest of the group, such as partially deaf and hard of hearing. The Accessible information standard guidance (NHS England 2016) has recommended that service providers ‘ask’ the person their identity and their needs. Terms used are hearing impaired, hard of hearing, hearing aids or cochlear implant users. A person might choose to ‘live in both worlds’. This is where they take on a ‘dual identity or mixed heritage’ and adopt a multiple modality of communication.

What do we know about deafness?

• Hard of hearing: up to 70dbB loss: may use hearing aids.
• Severe deafness: 71-90dB hearing loss: may use hearing aids to understand speech.
• Profound deafness: 91dB+ hearing loss: unable to understand speech, even with hearing aids (but might use them to detect noise).

What do we know about deaf culture or ‘Deafhood’?

Dr Paddy Ladd (Ladd P 2003) defines Deafhood as ‘a journey that a Deaf person undertakes to discover his, her or their identity and purpose in life.’ He says this can be an empowering process for a Deaf person, among other people, to re-affirm Deaf people’s role and place in society, history, and the world.

The above has provided us different perspectives of D/deaf people and deafness and hearing impairments.

We have adopted the use of ‘D/deaf’ for the rest of the content.

Deafness, mental health and wellbeing

The barriers experienced by D/deaf communities are quite universal and shared by other marginalised groups. This includes people for whom English is not their first language, and those who are financially struggling. Those socio-economic factors could widen the gaps in their access. The failure to recognise those disadvantages increases the impacts of their experience of exclusion and poverty. The assumptions of individuals’ or community assets might not be all valid. This includes conversing orally, having a smartphone or access to Deaf centres or clubs or family or carers support.

Inequality

D/deaf people have faced persistent inequality and inequity in their access to mental health services. (Critchfield AB 2002, Fellinger J et al 2005, Pertz L et al 2018).

There is a risk of:

• Misdiagnosis and relapse.
• Longer stays in hospital.
• Poorer concordance of their treatment and care.
• Higher incidence of comorbidity.
• Negative impacts on carers and families.

(du Feu M 1999, du Feu M and Chovaz C 2014).

D/deaf people are more likely to develop mental health difficulties. Two in five might require mental health services in their life. Lack of communication support and accessible information increases health inequality and worsens quality-of-life outcomes.

Communication and accessibility

The Royal National Institute for Deaf People (RNID) say D/deaf people or people who have hearing loss have individual needs. You should ask someone how best you can communicate with them. Not every tip available will be appropriate for every person who is D/deaf or has hearing loss.

What are the tips?

Accessible Information Standard

It helps to follow the Accessible Information Standard (AIS) requirements (NHS England 2016).  The Standard sets out a specific, consistent approach to:

• Identifying,
• Recording,
• Flagging,
• Sharing,
• Meeting the communication needs

of patients, service users, carers and parents with a disability, impairment or sensory loss. They provide interactive E-Learning.

Who are communication professionals and how they are booked?

• BSL / English Interpreters: work with BSL users.
• Lip speakers: work with English users, some do Sign Supported English.
• Speech to Text reporters: verbatim output; good for conferences.
• Notetakers (electronic and manual) give summaries.
• Other Communication professionals. For example, having Deafblind interpreters for dual sensory loss and Deaf relay interpreters. They are important for those experiencing language deprivation.

You can check online or contact your local leads responsible for equality, diversity, and inclusion about the details of booking. Do not forget to check the receipt of confirmation; booking sent does not mean they are available for the appointment.

More about language deprivation

Language deprivation, especially in D/deaf children, is a delay in language development. It occurs when there is insufficient exposure to language during the first years of a D/deaf or hard of hearing child’s life. This refers to spoken or signed language. This is the critical or sensitive period. Glickman N (2007, 2019) suggested that language deprivation could have significant impacts on all cognitive and psychosocial developments. And that the D/deaf person’s subsequent perception of identity and emotional regulations.

Deaf mental health services and referral pathways

D/deaf people’s access to specialist D/deaf mental health services across all levels of care is key. This involves offering them appropriate assessment. It includes support engagement with a personalised wellbeing- and recovery-oriented care package. The specialist services often start with the communication and language profiling. This is so reasonable adjustments are made in line with accessible information standard requirements. For example, communication passports are in place before any clinical interventions. The services are funded directly by the NHS England or the local Integrated Care Boards.

The specialist providers for D/deaf adults are usually tertiary services. The local secondary community teams will be responsible for the care management of the D/deaf users. The Deaf CAMHS (Child and Adolescent Mental Health Services) have their service specifications and referral systems. Referrals can come from any professional working with the child, young person, and family. This includes schools, mainstream and deaf, teachers of the deaf, CAMHS, GPs, paediatricians, and Children’s Services.

Self-help

Self-help information and digital technology are increasingly important, especially since the COVID 19 pandemic. More online services and information are now available for D/deaf citizens round the clock. However, they still struggle to access crisis services. They find it hard to have their communication needs met in health and care appointments. (AIS review –Signhealth 2022).

Personal Experience: Deaf people and their supporters

'I am particularly impressed with the communication passport prepared for me. Thanks for taking time to put all my needs of and recommendations together for better communication with me. I have shared it with other professionals involved as the passport is important to help me stay well.'

A Deaf user shared

'I understand counselling services for deaf people were mentioned during the deaf wellbeing group and input from Deaf counsellors. However, not all Deaf people want to see another Deaf person. Give Deaf people choices in who they want to see. This includes a hearing counsellor with skills and experience in mental health and Deafness.'

A Deaf user said

'It can be hard for me to understand and follow. I use face time with my family. I don’t always understand what is said because of my deafness. I don’t want to talk with my hand alone.'

A Deaf user said

'The Mental Health and Deafness service has been really helpful in advocating concerns about my communication needs. They helped me to get the support that I need. I’ve been able to access a Deaf personal assistant through social services. This now helps me to communicate without any barriers. I attend my wife’s care meeting and they help make sure that I’m understood and listened to. This has allowed me to feel more informed in my wife’s care and the support available to me. I’ve even been introduced to more technology for Deaf people and how to access BSL information online, which is fantastic. The service has opened up a whole new world to me.'

Graham, a Deaf carer from Durham, North East England said.

Suzie is Deaf, a lipreader and an experienced deaf awareness trainer. She delivered a Deaf awareness session for the mental health services in Durham and Tees Valley in 2023. She has been a key member of the Deaf wellbeing network. She has supported the recognition of the wide requirements for people who are D/deaf, deafened, deafblind or with hearing loss. She reminded us of the importance of communication tactics and signing skills. More importantly, it is the positive attitude and respect for providers. They can successfully secure the engagement and participation with the Deafened and all communities. She was grateful to have had the opportunity to deliver the session. She was glad to be a member of the wellbeing network as part of her carer support.

Suzie is a carer from Darlington, North East England.