‘All About Me’ Deaf Recovery Package Guidance Book Introduction Background

Welcome to ‘All About Me’, a recovery ‘All About Me’ is the result of hours of package developed by groups of Deaf discussion and reflection in local Deaf people to help support Deaf people with wellbeing groups or forums and in mental health problems. This booklet meetings with representatives from Deaf describes the reasons for creating “All mental health services in England. About Me” and how it was developed. It includes a practical step by step guide ‘All About Me’ will be used to structure in its use and guidance notes for each recovery planning, within Community, domain. The domains are as follows: Inpatient and Secure settings, and should 1. Communication become a focal point in Care Planning meetings and Reviews of Care between 2. Identity Deaf service users and Deaf and hearing 3. Understanding my Mental Health professionals/workers, interpreters, family 4. Problems and carers. 5. Rights 6. Services 7. Information 8. Healthy Living 9. Activities 10. Relationships

page 2 Understanding

Understanding Deaf people – In communicating with each other, Deaf Deaf people will share experiences with important things to know when people will also point at people, objects each other where they have had a cross- working with Deaf people and directions – this is not considered cultural misunderstanding with hearing rude in Deaf culture although it is in people, with humour, knowing that Deaf people view themselves as a hearing culture. other Deaf people have more than likely cultural and linguistic minority and are as been through similar experiences. a distinct group but, not a ‘sub culture’ Eye contact is necessary for Deaf people because the word sub has negative to communicate with each other Deaf people’s education connotations. Deaf people celebrate and hearing people. Regardless of it Every Deaf person has a different story of themselves as a vibrant and diverse being undertaken through British Sign how they learnt language and how they group. Language or communicating with their were able (or not able) to access and voices. understand education. How do Deaf people behave differently from hearing people? Common experiences Deaf people go to a range of schools To get other Deaf peoples’ attention, Deaf people have pride in their which vary widely in meeting their Deaf people will: community and do not feel ‘disabled’. communication needs, even within Deaf schools. Deaf people, as children, • Stamp on the floor to create vibrations Deaf people sometimes find that may have gone to a mainstream • Wave their hands they have problems with attending hearing school that offers support • Turn the lights on and off appointments – due to their name being from a resource centre/unit for Deaf/ called via a tannoy system, for example. hearing impaired children. Specialist • Touch each other’s shoulders Deaf schools vary in how they meet the communication needs of their pupilsthrough /spoken language, total communication or British .

page 3 Quite often Teachers of the Deaf were The advantageous group are those Bear in mind that the Deaf person may not specially trained in Sign Language Deaf and hearing children that are communicate through a variety of ways: and as a result pupils’ language born to Deaf parents. These children’s • Booking a qualified British Sign development and hence language development generally progresses as a Language Interpreter (yellow badge acquisition has been further delayed. hearing child would, within a hearing holder) The longer term impact has been that family. upon leaving school literacy levels have • Ensure you have eye contact been historically low for the majority of How can hearing people ensure they • Pen and paper Deaf people. To further compound the meet the needs of Deaf people? • Lip-reading low literacy levels, is the fact that 90% Helping Deaf people to feel less of Deaf children are born to hearing marginalised and therefore, less • Gestures parents. The majority of whom cannot disenfranchised is easily achieved by • Pointing (many choosing not to learn BSL) use making reasonable adjustments. • Make sure that there are alternatives sign language that is sophisticated to intercoms or anything that could be enough to enable their child to learn a barrier for the Deaf person accessing through incidental learning and shared your service conversation just as a hearing child would within the family. However, • Ensure your letters to them are in plain there are some Deaf children born English to exceptional hearing parents who • Do not state, ‘if unable to attend understand/appreciate how crucial Sign please ring this number’. Provide a text Language for their child’s development. number for Deaf people to contact your service.

page 4 Deaf peoples’ general life Deaf recovery Also important to Deaf people’s recovery Deafness has a lot of stigma attached to Effective communication is essential to is the attitude and expectations of it – which has impacted Deaf peoples’ begin developing a relationship with people/support network around them – lives historically. They may have missed a Deaf person. Where communication being Deaf is not something to mourn out on promotions at work, for example. meets the Deaf person’s needs, the and struggle on through life; as with any Or, have been late for work (yet again) Deaf person feels equal and respected. person, Deaf people can do anything. because the announcement over the Without communication, it is not tannoy at the train station, notifying a possible for the Deaf person to express And remember to smile…! platform change, was not heard. Most their needs or wishes or understand what Deaf people are ‘experts’ on reading Deaf people are stoical about life and other people want or intend. The Deaf people’s body language and facial given that it is difficult to access jokes person’s preferred communication may expressions. It is one of many gains from from a hearing spoken culture, tend to vary, and the effort to find out how they being Deaf and a visual communicator. create their own jokes which are largely want to communicate is appreciated. The Deaf people appreciate it when hearing drawn from the negative but sometimes ideal standard of healthcare would be people are friendly, understanding and funny, experiences they have had being direct communication in their preferred showing some interests in their culture. misunderstood, marginalised and language, that is – for the healthcare disenfranchised. practitioner to be fluent in . If this is not possible, a Deaf peoples’ social life qualified skilled experienced British Sign For various reasons, some Deaf people Language interpreter is the next best may not have met Deaf people growing alternative. up; and were therefore socially isolated from their peers. Often, their parents were hearing and didn’t want the Deaf person to learn sign language (because of the stigma).

page 5 Working with BSL/English The Interpreter/DPCS Including the ‘lived Deaf Interpreters and Deaf • Needs to have a minimum 3 years post experience’ into service Professional Communication qualification. provision Specialists (DPCS) in Mental • Needs to be experienced in a wide Health Services variety of clinical settings and To be part of a culturally Deaf therapeutic sessions. community, Paddy Ladd suggests 9 factors that indicate a Deaf person’s Essential Standards: • Have a clear understanding of All communication providers need acknowledgement of their identity, the different clinical roles in a culture and community1. to be qualified and registered with a multidisciplinary team. professional body such as NRCPD (The • Using BSL and sharing the culture that National Registers of Communication • Be familiar with psychiatric surrounds the Deaf Community. terminology and medication. Professionals working with Deaf and • Having a shared experience of Deaf Deafblind people) or similar. They need The Service education (oral/BSL). to have professional indemnity insurance • Books the same Interpreter/DPCS on a and an up to date DBS. • The shared experience of oralism and regular basis to allow rapport and trust its effect on self worth. to build within the triadic relationship, Best Practice Guidelines essential for ongoing therapy sessions. • The shared experience of being Interpreters and DCS (Deaf audiologically Deaf in a hearing world. Communication Specialist) will not only • Include preparation and debrief into session time. • Having the knowledge of Deaf social interpret spoken or signed language organisation and informal but will also include relevant cultural • Ensure the wellbeing of the and traditions, Deaf clubs, parties, and contextual variables to ensure that Interpreter/DPCS and be able to offer games. meaning is accurately conveyed between support and supervision if necessary. all parties. For further information please refer to the Communication domain appendix.

1 page 6 Understanding Deaf Culture, In Search of Deaf hood, 2003. • Monolingualism – not having a second “Deaf Hood encompasses the total sum language that is of benefit, lack of of all the positive meanings of the word English written or reading skills (only ‘Deaf’, past, present and future”. understand BSL not lip-reading or Paddy Ladd – Understanding Deaf writing). culture-in search of Deaf Hood 1983. • Socialising within the Deaf Community - local, national, sports, parties, “I came out from a cave in which the caravan club, LGBT etc. shadows of meanings had flickered, I came out into the bright day of true • Deaf Arts, social events, volunteering communication, where meanings were to be a Deaf role model. as plain as the hand in front of your face, • Embracing the D position and being where a message is no sooner expressed proud of Deaf heritage, community, than understood”. culture and language. Laurent Clerc, cofounder of The American School for the Deaf For people who identify as a member of 1785 – 1869 the Deaf community this can be summed up as ‘the Deaf Way’, ‘Deaf Heart’, ‘Deaf World’.

page 7 What is Recovery?

Users of mental health services have For deaf people in the deaf community, learn from each other as they travel identified three key principles: it is about recognising that their isolation along this journey. In a recovery approach 1. The continuing presence of hope that is not unique to them; that other deaf the personal qualities of staff become it is possible to pursue one’s personal people within hearing communities more important than qualifications: goals and ambitions. are just as isolated as them too. Also are they compassionate, respectful and importantly, that this isolation does not supporting? 2. The need to maintain a sense of have to continue. control over one’s life and one’s A service which uses a recovery approach symptoms. Recovery is about people living their creates an environment where people 3. The importance of having the life empowered by the three principles can begin to create a new story about opportunity to build a life beyond above; for deaf people it is additionally themselves. They can decide on what illness. about coping with the barriers that they they want from life, what they need to face as deaf people in a hearing world, achieve their goals, and how they want This means moving away from a focus on and also thriving despite them. to manage their mental health. As part illness and symptoms. It is about looking of this they might try to identify triggers at the positives and building on those. When a recovery approach is taken, the which cause their health to get worse. This can be difficult for mental health relationship between staff and patients They might also identify things they services which are used to defining may change. Staff are no longer the can do to stay healthy. Importantly, this patients by their diagnosis. It can also be ‘experts’ who make the decisions. means everyone’s recovery is personal difficult for people who might be used Instead, the patient and the clinician to them and they are in control of to seeing themselves defined by their are partners on a journey with equal it. Evidence has shown that the best diagnosis/label. For deaf people as well, importance which will lead to shared support people can get comes from with or without mental health issues, decision making at all levels. Both will others with a similar lived experience of they may have been negatively affected mental health problems. by hearing people’s expectations of them. page 8 When embarking on a journey of • Recovery can be affected by Deaf A key role for services is to support recovery the following key principles individuals’ mental health problems people who want to regain their role should be followed: and also by their environment. in the communities where they live. • The Deaf person should be at the • Support from family, friends and Taking part in social, educational, centre of the care at all times. professionals/staff is an important training, volunteering and employment Recovery journeys should be personal factor, and their understanding of activities are all ways in which the person to the Deaf person involved. The focus ‘Deaf awareness’ considered. concerned can: is holistic and should not focus on • A successful recovery journey provides • Take back the control of their life and symptoms only. hope, acceptance, control, basic needs become self-dependent. • Recovery is a journey and as with any and meaningful activity from the start • Feel accepted by their communities. journey, this takes time. of the journey. • Stay well and become a productive • From the start, all people involved in citizen and family member. the recovery pathway should have Within the ‘All about me’ film you will a belief that the Deaf individual see an example of Sarah’s Recovery In certain circumstances useful resources concerned can become well in journey. to aid this kind of activity are personal recovering from their mental health budget and/or personal health budget problem and empowered in managing Social Inclusion as Part of Recovery allocations that can be provided to Deaf the issues in their lives that occur due Social inclusion can increase a sense of individuals. to their deafness. belonging and wellbeing, thus having a positive effect on an individual’s recovery. It is important to recognise that lots of communities don’t understand the deaf person’s experience. During recovery a Deaf individual is empowered to ‘get their life back on track’, this may involve them getting into a Deaf community.

page 9 ‘All About Me’ Tool Explained

This tool has been developed to assist Prior to using the tool ensure you Who may need access to the ‘All the Deaf individual’s recovery from have a good understanding of: About Me’ package? mental health problems by following a 1. Deaf culture – you can do this • Deaf Service users simple process to gain an understanding by reading ‘Understanding Deaf • Deaf & hearing staff of what recovery means to an individual Culture’ on page three. and to help to identify their individual • Deaf and hearing carers, family and outcomes / goals. Once identified each 2. Recovery in mental health - you friends goal can be rated at agreed intervals to can do this by reading ‘What is track and review progress. Recovery?’ on page eight. 3. NHS England Accessible information standards - The following film explains this standard: www.youtube.comwatch?v=1k8CM2Q93k&feature=player_embedded

Once the healthcare professional has a good understanding of Deaf Culture, Recovery and accessible information standards they can proceed by arranging to meet the service user and start to use the ‘All about Me’ package. It may be useful to arrange to view the DVD together as some of the terminology within the film may need to be explained until individuals feel more familiar with it.

page 10 What is a Domain? ‘All About Me’ is based around 10 domains, a domain is basically a subject heading or something to discuss. The domains within the tool were identified as key factors that are important to Deaf individuals throughout the recovery journey. By using the domains as a framework for discussions you can ensure that you have considered all aspects leading to a collaborative, individualised and holistic package of care to support recovery. The 10 domains are colour coded to make them easier to use.

A full explanation of each domain can be found on the domain description templates in ‘All About Me’ tool . Each domain has a separate page to collate comments and details of an individual’s goals/preferred outcomes .

Once goals and outcomes have been agreed it is time to choose a rating scale.

page 11 Rating Scale Examples (High Rating/Good/Happy) What is a Rating Scale? A rating scale is a way to monitor and review progress 10 in achieving goals/desired outcomes identified in each 9 domain. It is important that individuals either create or choose their own rating scale 8 and this can be in any format including visual, numerical or narrative. A variety of simple 7 visual measures are provided in the appendix. The example used 6 in the film is shown here. 5 4 3 2 1

(Low Rating/Bad/Unhappy) page 12 Progress chart Recovery can often go up and down, one step forward and two steps back, but in time, when you look back, you can often see positive changes. Using this chart can help to visualise the recovery journey. A blank progress chart template can be found in ‘All About Me Tool’ booklet.

page 13 Example of what details should be Guidance note included on domain sheets: Deaf people often have had difficulty Comments: Please include notes from accessing information and knowledge in your discussions including strengths, many areas of life. Therefore it may be progress, risks, issues, concerns difficult for non-specialist services to fully meet their needs. If this is the case, we Goals/Outcomes Desired: Please recommend liaison/referral to specialist include details of the individual Goals Deaf mental health services, which / desired outcome that have been provide consultation. identified. Remember these are items that are important to the service user. Recovery can often feel overwhelming when starting at a low point or when feeling disempowered so professionals often ask service users to consider specific goals that they would like to achieve (ideally with them identifying these themselves). Goals can be identified in relation to each domain.

page 14 Appendix

Useful information can be found on the following websites: www.signhealth.org.uk www.mind.org.uk www.rethink.org www.rcpsych.ac.uk

page 15 Organisations involved in developing All About Me