Capacity to Communicate Training Toolkit Angela Lee-Foster Acknowledgements This work could not have been done without the dedication and assistance of Kirsty Burns, Project Assistant, and the foresight and management of Joff McGill. I am also particularly grateful to the following people for their thoughts, advice and guidance: Alison Bennett, Head of Staff Development, Sense Donovan Bell, Policy and Quality Officer, Sense Sue Brown, Head of Policy, Sense Meltem Budak, Policy Officer, Sense Liz Duncan, Head of National Acquired Deafblindness Team, Sense Bob Snow, Regional Director, Sense North Jenny Fletcher, Sense Training and Consultancy Joan Graham, MSI Consultant, Sense Cymru Paul Hart, Principal Practice Officer, Sense Scotland Rick Henderson, Director, Action for Advocacy Steve Kiekopf: Policy and Quality Officer, Sense Megan Mann, Acquired Deafblind Trainer & Co-ordinator John MacCarthy, Voices through Advocacy Project, Scope Karl Shore, Deputy Regional Director, Sense North Gerard Swann, Co-ordinator, Deafblind Diploma Clair Waterman, Assistant Regional Director, Sense South East Angie Lee-Foster, November 2008 Terminology • The terms deafblindness, multi-sensory impairment and dual sensory loss are used interchangeably in this publication • IMCA means either Independent Mental Capacity Advocacy or Independent Mental Capacity Advocate, depending on the context • ‘The Act’ refers to the Mental Capacity Act (2005) Capacity to Communicate Project Contacts Kirsty Burns, Project Assistant Tel: 020 7014 9305 Email: kirsty.burns@sense.org.uk Angela Lee-Foster, Project Consultant Tel: 01394 380 270 Email: leefoster.consulting@yahoo.co.uk Joff McGill, Project Manager Tel: 020 7014 9300 Email: joff.mcgill@sense.org.uk Sense 101 Pentonville Rd, London, N1 9LG Tel: 0845 127 0060 Textphone: 0845 127 0062 Fax: 0845 127 0061 E-mail: info@sense.org.uk www.sense.org.uk © Sense, 2008 Registered Charity No. 289868 Introduction This section describes the development and aims of this toolkit. It describes how the publication is structured and provides and overview on deafblindness. It also looks briefly at some key rights for deafblind people. This publication was originally developed as part of the Department of Health funded Capacity to Communicate Project (2006 – 2009). This project primarily aimed to train advocates, specifically Independent Mental Capacity Advocates, on the process and practice of good communication and good advocacy with adults who have little or no formal communication, including deafblind people. Evaluation from the training courses informed us that many advocates continued to use this as an ongoing resource. With the project being time limited, Sense wanted to make the toolkit available to all advocates who may come into contact with people with limited formal communication and sensory impairments after the project ended. We hope this will be a valuable tool for the foreseeable future. Aims of the toolkit This publication aims to help advocates: • Understand the role of IMCA in relation to good communication • Define and demonstrate an understanding of non-instructed advocacy • Understand how communication develops and the impact of multi-sensory impairment • Build practical strategies for planning, communicating, evidence gathering, observing, questioning and evaluating • Develop skills in enabling the person to take part in the decision making process and evaluate their ability to do so • Examine operational and ethical dilemmas which may be involved in this type of advocacy and how to overcome them • Build confidence and offer guidelines for good practice. How this publication is structured Chapter 1 gives a brief overview of the Mental Capacity Act 2005. Chapter 2 looks at the role and function of the IMCA and the importance of communication in this role. Chapter 3 examines non-instructed advocacy more broadly. Chapter 4 looks at how communication develops. It is aimed at understanding the communication of those who have multi-sensory impairment and profound and multiple learning difficulties. Chapter 5 moves on to look more deeply at the process of communication and how we may understand and interpret non-verbal communication. Chapter 6 looks at communication in older deafblind people and highlights that many older deafblind people are not identified as such. Chapter 7 identifies practical strategies for communication and information gathering, paying particular attention to planning, observation, recording and evaluating communication, gathering information and weighing up options. Chapter 8 focuses on some operational and ethical issues for independent mental capacity advocates. Chapter 9 provides good practice guidelines and summarises the learning. There is a summary at the end of each chapter of the key learning points. In the appendices you will find useful checklists to help you be systematic and thorough in your approach to non-instructed advocacy as well as references, information on types of communication and further sources of support. How this publication and training were developed This publication (and the original training course) was developed following a survey of advocacy schemes, which focused on advocacy for those lacking capacity and who have no formal communication skills. The objective of the survey was to assess the level of knowledge and experience advocates already held in this area and identify training needs. In conducting our research we used the Delphi approach. This technique uses a series of questionnaires (here a two stage survey) to reach a level of consensus and clarity over the identification of training needs. Why a focus on deafblindness? As an advocate, and particularly an IMCA, you are likely to come across people who have a sensory impairment and potentially a dual sensory loss. They may not have had a formal diagnosis of deafblindness, they may not have had the severity of their hearing or visual loss assessed and possibly not even identified. Nevertheless, any sensory impairment has an impact on the person’s communication and understanding of the world around them: as an advocate it is vital to be aware of indicators or instances of sensory impairment and how you can best support the person in your role. About Sense This training has been devised by Sense. Sense is the UK’s largest organisation for children and adults who are deafblind or have associated disabilities. Sense provides direct services to deafblind people and their families, offers advice and support and campaigns for improvements to policy and legislation. Sense has a worldwide reputation for its expertise in working with deafblind people. We also work with people with single sensory impairments and a wide range of other difficulties – including physical disabilities, learning disabilities, and challenging behaviour. About deafblindness Deafblindness is a unique disability. Two sensory impairments multiply and intensify the impact of each other creating a severe disability which is different and distinctive. It is sometimes known as dual sensory impairment or multi-sensory impairment and is more than a combination of visual and hearing impairments. The term deafblindness describes a condition that combines, in varying degrees, both hearing and visual impairment. Many people will not be totally deaf and totally blind but will have some remaining use of one or both senses. Others will also have additional physical and/or learning disabilities. All deafblind people experience problems with communication, access to information and mobility. However, their specific needs vary enormously according to age, onset and type of deafblindness. Ninety five per cent of what we learn about the world and ourselves comes through our sight and hearing, because deafblind people lack these two distinct senses they find that their mobility, communication and access to information are greatly affected. Congenital Deafblindness When someone is born with combined sight and hearing difficulties (or acquires dual sensory loss at a very early age, before they acquire language) this is called congenital deafblindness. When Sense began its work in 1955 rubella (German measles) in pregnancy was the main cause of deafblindness. The effects can vary enormously, but hearing loss, visual difficulties and heart problems are common. Thanks to vaccination rubella is much less common, although many people born before the vaccine was introduced still need specialist help and care. Other causes of congenital deafblindness Medical conditions caused by premature birth and birth trauma are now more common causes of congenital deafblindness. These may be associated with rare genetic disorders or with infections during pregnancy. In addition, severe infections during early childhood can lead to brain damage, bringing about similar problems to those faced by people born with deafblindness. Many of these children will have a wide range of other disabilities such as learning difficulties, epilepsy, feeding problems and severe physical disabilities. Deafblind children need to get appropriate specialist help as soon as possible otherwise the experience of extreme isolation leads to further difficulties in establishing communication and developing learning skills. What support do congenitally deafblind people need? Deafblindness creates special needs that cannot be met by services for people who are only deaf or blind. In many cases people born deafblind have other physical or learning disabilities. People with multiple disabilities require specialist services geared towards each individual’s combination of abilities and impairments. Communication is enormously challenging as people born deafblind have trouble grasping the concepts of language. Intensive one-to-one work helps them understand that human interaction is the basis of communication. All deafblind children and adults have the capacity to learn and achieve. Unfortunately, without the right kind of help, their cognitive, emotional and physical development may be delayed because of lack of stimulation. Early intervention and continuing support is needed throughout the person’s lifetime. Acquired Deafblindness People with acquired deafblindness acquire their condition later in life. There are many causes of acquired deafblindness. The genetic condition Usher syndrome is a common cause. Some people are born deaf or blind and lose their sight or hearing through illness or accident. As people get older, hearing and sight loss can occur, for some this can mean problems with both of these senses. The combined loss of both sight and hearing can have a profound effect upon people’s lives, including: difficulties with communication, isolation and loss of independence. Usher syndrome Usher syndrome is a genetic condition that causes deafness or partial hearing from birth and sight loss over a number of years. This sight loss often begins in late childhood and is caused by an eye condition called retinitis pigmentosa (RP). Over time vision gradually deteriorates, leading to increasing difficulties in moving around safely and communication. Usher syndrome is not associated with learning disabilities or other physical impairments. It is an inherited condition passed through the family. When someone finds they have Usher syndrome the news can be devastating: they will have grown up as deaf or partially hearing and coming to terms with also losing their sight can be very hard. People often feel isolated from friends and family and may experience emotional and psychological difficulties as a consequence. With the right training and support people with Usher can learn new skills to maintain their independence. Older deafblind people The largest group of deafblind people have developed hearing and vision problems as they get older. Of all people in the UK over 75; one in six has a visual impairment. Of these, half will also be hard of hearing. Many older people’s sight and hearing can be enhanced or maintained. The following groups of older deafblind people will need different types of help: • People who have developed a dual sensory loss as they age – the largest group • People who have adapted to blindness or partial sight during their lives and are now losing their hearing • Older deaf or hard of hearing people whose usual means of communication is speech or sign language and who are now losing their sight • Older people who have had a dual sensory loss for all or most of their lives • Older people who have become deafened and use lip reading as a means of communication. The problems created by dual sensory loss can lead older people to become increasingly withdrawn, depressed or isolated. They may find it much harder to look after themselves, but with the right help may still lead fulfilling lives. What support do acquired deafblind people need? Despite the enormous challenges acquired deafblindness brings, with the right support many people can go to college, get jobs, find a partner and enjoy their leisure and older people can live independent lives. Support may encompass communicator guides, benefits, support in the home and technical solutions to enable independent living. If you want to know more about deafblindness or specialist services please contact Sense, our details are in the Resources and Contacts section at the end. Rights for Deafblind People Right to services The Department of Health has issued guidance to local authorities on how they should provide services for deafblind people. This provides greater rights to services designed for deafblind people and staffed by people who understand deafblindness. The guidance to local authorities is issued under Section 7 of the Local Authority Social Services Act 1970 and is called Social Care for Deafblind Children and Adults (LAC 2001 (8)) The Guidance in brief The guidance asks local authorities to: • Identify, make contact with and keep a record of deafblind people in their catchment area (including those who have multiple disabilities including dual sensory impairment); • Ensure that an assessment is carried out by a specifically trained person/team, equipped to assess the needs of a deafblind person – in particular to assess need for one-to-one human contact, assistive technology and rehabilitation; • Ensure that appropriate services are provided to deafblind people, who are not necessarily able to benefit from mainstream services or those services aimed primarily at blind people or deaf people who are able to rely on their other senses; • Ensure they are able to access specifically trained one-to-one support workers for those people they assess as requiring one; • Provide information about services in formats and methods that are accessible to deafblind people; • Ensure that one member of senior management includes, within his/her responsibilities, overall responsibility for deafblind services. Who does this apply to? The guidance defines deafblindness widely and says, “Persons are regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility”. This definition means that anyone who has both a hearing loss and a sight loss that cause them problems in everyday life is covered by the new guidance, people do not have to be completely deaf and blind. What does this mean in practice? The guidance means that any person with a hearing and sight loss should expect: • To be assessed by a person who understands the effects of a dual sensory impairment, and the support that can be provided Ask the assessor what their qualifications/experience are. Suggest they get in touch with Sense for more information about deafblindness. Ask the local authority how they plan to provide enough assessment by trained assessors. • To receive one to one support if needed Ask the local authority how they can provide trained one to one support. Ensure the assessment includes information about the person’s need for one to one support – for example to go shopping, to go to the doctor, to visit friends • To receive services and information in way that is accessible to them Ask the local authority how they plan to make everything accessible. If a letter is sent the person can’t read, a visit by a person they don’t understand, an invitation to a building they can’t get into, or find their way around – let the local authority know. Right to one-to-one support The government’s guidance says that social services must assess a deafblind person to see if they need one-to-one support. It also says that they must “ensure they are able to access specifically trained one-to-one support workers for those people they assess as requiring one”. The authority must also be able to provide “specifically trained one-to-one support workers”. This means people with appropriate training and qualifications. These people fall into three main categories; • Communicator Guides: usually work with people who have become deafblind later in life, offering support that the deafblind person needs to live independently. They have qualifications from Signature. • Interpreters: act as a communication link between the deafblind person and other people, using the deafblind persons preferred method of communication. They have qualifications from Signature. • Intervenors: help children and adults who were born deafblind to learn by offering them sensitive, individualised one-to-one attention. Signature (listed at in the appendix) maintain a register of qualified interpreters and communicator guides, the National Organisation of Intervenors maintains a register of intervenors (information available from Sense) Right to information The Disability Discrimination Act (1995) makes it clear that every organisation that provides services to the public must provide that information in a variety of formats so that it is accessible to disabled people. The Department of Health guidance also makes it clear that local authorities have a duty to provide “information about services in formats and methods that are accessible to deafblind people”. The guidance goes on to list possible methods of communication as: • Clear speech and lip reading • British Sign Language or a sign system e.g. Sign Supported English • Visual Frame Signing, Close-up Signing, Hands-on Signing • Braille and Moon • Block Alphabet • Deafblind Manual Alphabet • Note writing • Electronic communication (with Braille output or large font on screen) • Individual’s own personal signs • Tadoma (gaining additional information from vibrations of the speaker’s vocal chords) • a combination of any of the above. Personalisation and self-directed support Personalisation of services is becoming the key part to the government’s approach to meeting health and social care needs. Personalisation attempts to make sure that every person who receives care and support should be supported to shape their own lives and the type of services they receive. For personalised support to work for deafblind people, it is crucial to take account of specialist support needs and their cost. Self-directed support is a general term used to describe new approaches in the social care system that put individual service users in control of the services they receive. This should enable individuals to make the decisions about the support they receive and manage their own risks. Direct payments, personal budgets, individual budgets and self-assessment are all examples of self-directed support as they all promote the individual as the primary decision-maker. Advocacy will play an important part in this new framework for health and social care. The Putting People First1 Concordant says that sustainable and meaningful change depends significantly on our capacity to empower people who use services. Part of this transformation includes a universal information, advice and advocacy service where personal advocates should be available in the absence of a carer or in circumstances where people require support to articulate their needs and/or use the personal budget. Chapter 1 Mental Capacity Act This chapter aims to provide a brief overview of the Mental Capacity Act (2005) in order to put the subsequent chapters into context. An Independent Mental Capacity Advocate should be very familiar with the Act, the Code of Practice and the regulations. There is also much useful information in the guidance and legislation for non-instructed advocates not providing IMCA. The Mental Capacity Act2: key principles Introduction The Mental Capacity Act (2005), covering England and Wales, provides a statutory framework for people who lack capacity to make decisions for themselves, or who have capacity and want to make preparations for a time when they may lack capacity in the future. It sets out who can take decisions, in which situations, and how they should go about this. The five statutory principles of the Act are: 1. A person must be assumed to have capacity unless it is established that they lack capacity. 2. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. 3. A person is not to be treated as unable to make a decision merely because he makes an unwise decision. 4. An act done or decision made under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. 5. Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action. The Act aims to provide an appropriate balance between an individual’s right to autonomy and self-determination with the right safeguards and protection from harm. Defining incapacity Mental capacity means the ability to make a decision. This includes the ability to make a decision that affects daily life –such as when to get up, what to wear as well as decisions that may have legal consequences – for the person themselves, or others. The Act says ‘a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the function of the mind or brain’ (s. 2 (1) ). Whenever the term ‘a person who lacks capacity’ is used, it means a person who lacks capacity to make a particular decision or take a particular action for themselves at the time the decision or action needs to be taken. This reflects the fact that people may lack capacity to make some decisions for themselves, but will have capacity to make other decisions. For example, they may have capacity to make small decisions about everyday issues such as what to wear or what to eat, but lack capacity to make more complex decisions about financial matters. Some people may have fluctuating capacity, whilst others may always lack capacity to take some kinds of decisions. Assessing capacity The Act sets out a two stage test of capacity. Stage 1 requires proof that the person has an impairment of the mind or brain, or some sort of or disturbance that affects the way their mind or brain works. If a person does not have such an impairment or disturbance of the mind or brain, they will not lack capacity under the Act. Examples of an impairment or disturbance in the functioning of the mind or brain may include the following: • conditions associated with some forms of mental illness • dementia • significant learning disabilities • the long-term effects of brain damage • physical or medical conditions that cause confusion, drowsiness or • loss of consciousness • delirium • concussion following a head injury, and • the symptoms of alcohol or drug use. In the Stage 2, for a person to lack capacity to make a decision, the Act says their impairment or disturbance must affect their ability to make the specific decision when they need to. But first people must be given all practical and appropriate support to help them make the decision for themselves. The second part of the test is functional focusing on how the decision is made. A person is unable to make a decision if they are unable to: • Understand the information relevant to the decision. It is important not to assess someone’s understanding before they have been given relevant information about a decision. Every effort must be made to provide information in a way that is most appropriate to help the person to understand. • Retain that information. The person must be able to hold the information in their mind long enough to use it to make an effective decision. But section 3(3) of the Act states that people who can only retain information for a short while must not automatically be assumed to lack the capacity to decide – it depends on what is necessary for the decision in question. Items such as notebooks, photographs, posters, videos and voice recorders can help people record and retain information. • Use or weigh that information as part of the process of making the decision. For someone to have capacity, they must have the ability to weigh up information and use it to arrive at a decision. Sometimes people can understand information but an impairment or disturbance stops them using it. In other cases, the impairment or disturbance leads to a person making a specific decision without understanding or using the information they have been given. • Communicate his or her decision (whether by talking, using sign language or other means). Before deciding that someone falls into this category, it is important to make all practical and appropriate efforts to help them communicate. This might call for the involvement of speech and language therapists, specialists in non-verbal communication or other professionals. Ensuring participation Before deciding that someone lacks capacity to make a particular decision, it is important that all practical and appropriate steps are taken to enable them to make that decision themselves. In other words, communication starts with the decision maker. The decision maker must: • Provide all relevant information. All practical and appropriate steps must be taken to help the person make a decision for themselves. Information must be tailored to an individual’s needs and abilities. It must also be in the easiest and most appropriate form of communication for the person concerned. • Communicate in an appropriate way. To help someone make a decision for themselves, all possible and appropriate means of communication should be tried. The Code of Practice gives guidance to decision makers on approaches to communication and seeking advice and support of interpreters and experts. • Make the person feel at ease. To help put someone at ease and so improve their ability to make a decision, careful consideration should be given to both location and timing. • Support the person. In some circumstances, individuals will be more comfortable making decisions when someone else is there to support them. The starting assumption must be that the person has the capacity to make the specific decision. If, however, anyone thinks a person lacks capacity, it is important to then ask the following questions: • Does the person have all the relevant information they need to make the decision? • If they are making a decision that involves choosing between alternatives, do they have information on all the different options? • Would the person have a better understanding if information was explained or presented in another way? • Are there times of day when the person’s understanding is better? • Are there locations where they may feel more at ease? • Can the decision be put off until the circumstances are different and the person concerned may be able to make the decision? • Can anyone else help the person to make choices or express a view (for example, a family member or carer, an advocate or someone to help with communication)? Anybody who claims that an individual lacks capacity should be able to provide proof. They need to be able to show, on the balance of probabilities, that the individual lacks capacity to make a particular decision, at the time it needs to be made. Best interest checklist One of the key principles of the Act is that any act done for, or any decision made on behalf of a person who lacks capacity must be done, or made, in that person’s best interests. The concept has been developed by the courts in cases relating to people who lack capacity to make specific decisions for themselves, mainly decisions concerned with the provision of medical treatment or social care. The term ‘best interests’ is not actually defined in the Act, because every case – and every decision – is different, the law can’t set out all the factors that will need to be taken into account in working out someone’s best interests. However, section 4 of the Act sets out some common factors that must always be considered when trying to work out someone’s best interests. These factors are summarised in a checklist: • Equal Consideration and non-discrimination. Working out what is in someone’s best interests cannot be based simply on someone’s age, appearance, condition or behaviour • Considering all relevant circumstances. All relevant circumstances should be considered when working out someone’s best interests. The person’s past and present wishes and feelings, beliefs and values should be taken into account • Regaining capacity. If there is a chance that the person will regain the capacity to make a particular decision, then it may be possible to put off the decision until later if it is not urgent • Encouraging participation. Every effort should be made to encourage and enable the person who lacks capacity to take part in making the decision. The views of other people who are close to the person who lacks capacity should be considered, as well as the views of an attorney or deputy. There are exceptions to this, including circumstances where a person has made an advance decision to refuse treatment and, in specific circumstances, the involvement of a person who lacks capacity in research. But otherwise the underpinning principle of the Act is that all acts and decisions should be made in the best interests of the person without capacity. Summary • The Mental Capacity Act 2005, covering England and Wales, provides a statutory framework for people who lack capacity to make decisions for themselves, or who have capacity and want to make preparations for a time when they may lack capacity in the future. • A person must be assumed to have capacity unless it is established that they lack capacity. • A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. • A person is not to be treated as unable to make a decision merely because he makes an unwise decision. • An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. • The Act sets out a two stage test of capacity. The first stage requires proof that the person has an impairment of the mind or brain, or some sort of or disturbance that affects the way their mind or brain works. • The second stage of the test is functional focusing on how the decision is made. A person is unable to make a decision if they are unable to: understand, retain, and use information and communicate their decision. • Before deciding that someone lacks capacity to make a particular decision, it is important that all practical and appropriate steps are taken to enable them to make that decision themselves. • The decision maker must: provide all relevant information, communicate in an appropriate way, make the person feel at ease and support the person. • Any decision made on behalf of a person who lacks capacity must be done, or made, in that person’s best interests. • The Code of Practice provides a best interests checklist which includes: equal consideration and non-discrimination, consideration of all relevant circumstances, whether the person might regain capacity and permitting and encouraging participation. Chapter 2 Independent Mental Capacity Advocates This chapter is intended to provide a brief overview of the role of the Independent Mental Capacity Advocate and focus on the importance of communication in that role. Independent Mental Capacity Advocates3 An overview of IMCA The Mental Capacity Act creates the statutory safeguarding role of the Independent Mental Capacity Advocate (IMCA). An IMCA is someone appointed to support a person who lacks capacity but has no one to speak for them and is facing serious medical treatment or a long-term care move. At the local authorities or NHS bodies’ discretion, an IMCA may also be involved in a care review following a change of accommodation and involved in adult protection cases. The IMCA makes representations about the person’s wishes, feelings, beliefs and values, at the same time as bringing to the attention of the decision-maker all factors that are relevant to the decision. It is not the role of an IMCA to make a judgment about whether a person lacks capacity to make a decision, is without family or friends who can be consulted, or judge what is in the person’s best interests. That responsibility lies with the decision maker in the health or social care setting. However, the IMCA can challenge the decision-maker on behalf of the person lacking capacity, if necessary, about these judgments. Decisions about change of accommodation are often subject to available resources. An IMCA can safeguard the best interests of the client by keeping their interests at the heart of the decision making process. In decisions concerning serious medical treatment the determining factor is often medical expertise; the IMCA can ensure that the person’s values and lifestyle adds to this clinical knowledge when reaching a decision. Role of an IMCA The IMCA: • Represents and supports the person who lacks capacity • Finds and evaluates information • Finds out the person’s wishes, beliefs, feelings and values • Considers alternative courses of action • If necessary, seeks a second medical opinion • Writes a report for the decision maker • Is able to challenge the decision maker if need be. IMCAs provide statutory advocacy. They are instructed to support and represent people who lack capacity to make decisions on specific issues. IMCAs have a right to meet in private the person they are supporting and are allowed access to relevant healthcare records and social care records. They provide support and representation specifically while the decision is being made, and act quickly so their report can form part of decision-making. The IMCA: • Is independent of the person making the decision • Provides support for the person who lacks capacity • Represents the person without capacity in discussions to work out whether the proposed decision is in the person’s best interests • Provides information to help work out what is in the person’s best interests and raise questions or challenge decisions which appear not to be in the best interests of the person. The information the IMCA provides must be taken into account by decision-makers whenever they are working out what is in a person’s best interests. The Mental Capacity Act 2005 (Independent Mental Capacity Advocates) (General) Regulations 2006 state: • The IMCA must determine in all circumstances how best to represent and support the person • To the extent that it is practicable and appropriate to do so ‘interview’ the person • Examine relevant records to which they have access to under the s35 of the Act • Consult with people engaged in caring for or treating the person and others who may be able to comment on the person’s wishes, feelings, belief or values • Take all steps to obtain information about the decision and the person they consider necessary. Representing and supporting the person who lacks capacity • IMCAs should take account of the guidance on best interests and must act in accordance with the principles of the Act, and according the guidance laid down in the Code of Practice and Regulations • IMCAs should find out whether the decision-maker has given all practical and appropriate support to help the person who lacks capacity to be involved as much as possible in decision-making • If the person has communication difficulties, the IMCA should also find out if the decision-maker has obtained any specialist help (for example, from a speech and language therapist) • Sometimes an IMCA may find information to suggest a person might regain capacity in the future, either so they can make the decision themselves or be more involved in decision-making. In such a situation, the IMCA can ask the decision-maker to delay the decision, if it is not urgent • The IMCA will need to get as much information as possible about the person’s wishes, feelings, beliefs and values – both past and present. They should also consider the person’s religion and any cultural factors that may influence the decision. Sometimes an IMCA will not have time to carry out full investigations. In these situations, the IMCA must make a judgement about what they can achieve in the time available to support and represent the person who lacks capacity. Sometimes an IMCA might not be able to get a good picture of what the person might want. They should still try to make sure the decision-maker considers all relevant information by raising relevant issues and questions, and providing additional, relevant information to help the final decision. Finding and evaluating information The Act provides IMCAs with certain powers to enable them to carry out their duties. These include: • the right to have an interview in private with the person who lacks capacity, and • the right to examine, and take copies of, any records that the person holding the record thinks are relevant to the investigation (for example, clinical records, care plans, social care assessment documents or care home records). An IMCA may also need to meet professionals or paid carers providing care or treatment for the person who lacks capacity. These people can help assess the information in case records or other sources. They can also comment on possible alternative courses of action. Ultimately, it is the decision-maker’s responsibility to decide whether a proposed course of action is in the person’s best interests. However, the Act requires the decision-maker to take account of the reports made and information given by the IMCA. In most cases a decision on the person’s best interests will be made through discussion involving all the relevant people who are providing care or treatment, as well as the IMCA. Finding out the person’s wishes and feelings, beliefs and values An IMCA needs to try and find out what the person’s wishes and feelings might be, and what their underlying beliefs and values might also be. The Code of Practice states that an IMCA should try to communicate both verbally and non-verbally with the person who may lack capacity, as appropriate. An IMCA may also talk to other professionals or paid carers directly involved in providing present or past care or treatment. An IMCA might also need to examine health and social care records and any written statements of preferences the person may have made while they still had capacity to do so. Considering alternative courses of action An IMCA will need to check whether the decision-maker has considered all possible options. They should also ask whether the proposed option is less restrictive of the person’s rights or future choices or would allow them more freedom. An IMCA may wish to discuss possible options with other professionals or paid carers directly involved in providing care or treatment for the person. But they must respect the confidentiality of the person they are representing. Getting a second medical opinion For decisions about serious medical treatment, an IMCA may consider seeking a second medical opinion from a doctor with appropriate expertise. This puts a person who lacks the capacity to make a specific decision in the same position as a person who has capacity, who has the right to request a second opinion. Challenging the decision maker The Mental Capacity Act Code of Practice (Chapter 15) sets out how disagreements can be settled. Approaches will vary according to the nature and urgency of the disagreement. An IMCA can challenge disagreements about healthcare and treatment through Patient Advice and Liaison Service (England) through the Community Health Council (Wales), using the NHS Complaints Procedure, referring the matter to the local continuing care review panel or using Independent Complaints Advocacy Service (England). An IMCA can challenge disagreements about social care by using the care home’s complaints procedure or the local authority complaints procedure. In particularly urgent or serious cases and IMCA may refer the case to the Court of Protection. IMCA and the importance of communication Communication is a fundamental part of the role of an IMCA. IMCAs will need to be: • Confident communicators: aware of the diversity and complexity of communication issues a person may present to them, and confident at communicating with those around the person • Confident investigators: able to ask the right questions and gather the right information • Confident evaluators: able to analyse and weigh up communications, observations and information, some of which may be in conflict with each other. Range of communication difficulties An IMCA may be asked to represent people with a range of difficulties including those with: • Learning difficulties including people with autistic spectrum disorder • Profound and multiple disabilities, including sensory impairment • Acquired brain injury • Dementia • Mental health problems. The IMCA pilot and first annual report identified that the largest proportion of clients were people with either a diagnoses of learning disability or dementia. The majority of the decisions needing to be made are around change of accommodation. Non verbal communication Of all eligible referrals in the pilot IMCA programme 22% had no formal language, this includes: • People using: gestures, facial expressions and vocalisations (10%) • Those using pictures, symbols or Makaton (6%) • Those who had no obvious means of communication (6%). A further 8% had ‘other’ means of communication which was not spoken language. So, at least one third of referrals had complex communication needs an IMCA would need to pay careful attention to. Transferable communication skills It is certain that an IMCA or advocate in general will not have in-depth knowledge or expertise in each of the client groups that may be encountered through IMCA casework. However, a broad awareness of communication, its development, function, methods and approaches will be useful and many strategies may be transferable. In addition, in the short space of time IMCA allows it is advisable to seek advice from experts such as speech and language therapists, experts in deafblindess, autism or dementia, depending on the client. Similarly, although an advocate may have some knowledge of BSL or similar, it takes years to build up any expertise and it is always advisable if the person has an alternative method of formal communication to call in an interpreter. There will be more information about this when we look at communication and in the resources and contacts section. Summary • The Mental Capacity Act creates the statutory safeguarding role of the Independent Mental Capacity Advocate (IMCA). • An IMCA is someone appointed to support a person who lacks capacity but has no one to speak for them and is facing serious medical treatment or a long-term care move. • At the local authorities or NHS bodies’ discretion, an IMCA may also be involved in a care review following a change of accommodation and involved in adult protection cases and deprivation of liberty cases. • An IMCA: – Represents and supports the person who lacks capacity – Finds and evaluates information – Finds out the person’s wishes, beliefs, feelings and values – Considers alternative courses of action – If necessary, seeks a second medical opinion – Writes a report for the decision maker – Is able to challenge the decision maker if need be. • IMCAs must determine in all circumstances how best to represent and support the person and the extent that it is practicable and appropriate to ‘interview’ the person. • IMCA caseworkers should be confident communicators, investigators and evaluators. • On average a third of all referrals will be people who do not use formal, spoken language as a means of communication. Chapter 3 Non-instructed advocacy Many IMCA cases will involve non-instructed advocacy. Non-instructed advocacy is not exclusively used in IMCA work but is found in broader forms for advocacy. This chapter aims to consider the definition, form and function of non-instructed advocacy in a little more detail. It provides a context for the focus on communication. Non-instructed advocacy Non-instructed advocacy: a definition 4 Non-instructed advocacy can be defined as taking affirmative action with or on behalf of a person who is unable to give a clear indication of their views or wishes in a specific situation. The non-instructed advocate seeks to communicate with the person, uphold their rights, ensure fair and equal treatment and access to services, and ensure that decisions are taken with due consideration for the person’s preferences and perspectives. Using this definition the advocate performs several functions: • To keep the person at the centre of the action or decision and aim wherever possible to communicate with them – to be person centred • To safeguard the person’s rights asking questions and evaluating options – to keep a ‘watching brief’ 5 • To act as an ‘articulate friend’ where the relationship is long-term and some communication has been established and preferences identified. A short history of non-instructed advocacy Increasingly, over the last ten years or so, the role of an advocate has been to enable the person to discover and use their own voice. Advocates have progressively become reliant on taking instructions and advocacy has become defined to a great extent by its function of representing people. Advocacy schemes have tended to focus on those who are able to give instruction. To some extent, this has been driven by funding and targets. However, during the emergence of advocacy in the 1980s most advocacy was conducted in long-term institutions with people who were unable to give instruction to their advocate, either because they were unable to, or had few opportunities to develop communication skills. Non-instructed advocacy was the main approach used at this time. In 2002 the Independent Advocacy Campaign, a consortium of advocacy organisations and national charities, conducted some research to determine whether there was a lack of advocacy provision for adults with physical, sensory, communication and profound and multiple impairments. The resulting report – Advocating for Equality6 – established that there was inadequate advocacy provision and that the approaches many schemes had adopted to advocacy, the lack of skills and experience and the way funding was targeted at specific groups of people meant that those with physical, sensory, communication needs and profound and multiple impairments were losing out. The report established that advocacy schemes are far less likely to provide advocacy for people with communication and profound and multiple impairments than any other groups of people. Almost half of the respondents stated that lack of funding or the way funding was targeted at specific groups of people – learning disability, mental health, elderly, physical impairments – was preventing them from providing advocacy for people whose needs were complex or manifold. The time it often takes to establish a relationship with someone with communication and profound and multiple impairments and the difficulty in measuring outcomes meant that schemes were not addressing their needs in order to fulfil service level agreements and achieve targets. The other key issue hindering the provision of advocacy to people with communication and profound and multiple impairments was the lack of specialist skills and experience. This environment created a shift towards predominantly instructed advocacy. However, there are still many people who because of their communication difficulties or lack of capacity cannot directly or readily express their wishes or preferences to an advocate. The Mental Capacity Act has enshrined advocacy for this group of people in certain circumstances. Differences between instructed and non-instructed advocacy Instructed advocacy is relatively straightforward to comprehend. In this form of advocacy the person instructs their advocate, the advocate can work towards developing an open and trusting relationship where goals and outcomes of the advocacy can be explored and clarified. The advocate can readily represent the person’s wishes and views and review and evaluate progress. The whole process is person centred and person led, and the advocate is entirely accountable to the person. Non-instructed advocacy has a different set of demands. The person cannot instruct their advocate, the advocate may observe, identify communicative behaviour, aim to establish some form of communication, gather information, ask questions and challenge opinions. The role of an advocate becomes more rigorous and also more transparent in that the advocate must evaluate their approach, and pay careful attention to what questions they ask and how they and others interpret behaviour and communication. The advocacy still remains person centred, but less person led. Accountability of the advocate becomes more extensive and complex. There is much about the process of non-instructed advocacy that instructed advocacy can learn from: the importance of the function of observation, the structure of questioning and negotiation, the significance of accountability, and the interpretation of non-verbal communication (even by those who have formal language). Non-instructed advocacy demands an integrity and transparency of process that can be instructive to all forms of advocacy. IMCA and non-instructed advocacy Non-instructed advocacy is not exclusively used in IMCA work but also in broader forms for advocacy. In generic non-instructed advocacy an advocate may spend months trying to establish a rapport and communicate with the person, building a picture of their world, trying to identify their likes and dislikes. The IMCA process has very specific constraints of limited time and a specific decision needing to be made: the outcomes are in the hands of the decision maker. There are real challenges for an advocate in terms of developing meaningful communication and rapport, and gathering and evaluating information and options within this framework. Nevertheless, the regulations clearly state an IMCA’s role is to find out the person’s wishes, beliefs and values. Communication, Capacity and Non-instructed advocacy The issues of communication and capacity are at the centre of non-instructed advocacy. Non-instructed advocacy, by its definition means that the person is not able to readily communicate their wants, wishes and needs. The challenge for the advocate is to try and establish communication with the person they are supporting using the person’s preferred communication methods. Some knowledge of communication approaches is needed, but also confidence in approaching a person who lacks formal methods of communication and establishing a rapport with them. If some means of communication can be established it still may not be possible for the person to understand and communicate the particular decision required of them due to their cognitive ability: the decision may be too complex for them. While establishing and developing a means of communication with the person is central to the role of an advocate, it is also important in time limited non-instructed advocacy situations to deploy the wider techniques of observation, questioning, information gathering, evaluating evidence, evaluating interpretations of communication and behaviour. Summary • Non-instructed advocacy can be defined as taking affirmative action with or on behalf of a person who is unable to give a clear indication of their views or wishes in a specific situation. • The non-instructed advocate seeks to communicate with the person, uphold their rights, ensure fair and equal treatment and access to services, and ensure that decision are taken with due consideration for the person’s preferences and perspectives. • The person should be at the centre of the process, the advocate should act as watchdog, investigator and negotiator. • Increasingly, over the last ten years or so, the role of an advocate has been to enable the person to discover and use their own voice. • Advocacy schemes have tended to focus on those who are able to give instruction. To some extent, this has been driven by funding and targets together with lack of skills and expertise. • The Mental Capacity Act has enshrined the right to non-instructed advocacy for those people who are unable to give a clear indication of their views in certain circumstances. • Non-instructed advocacy has a different set of demands. The person cannot instruct their advocate, the advocate may observe, identify communicative behaviour, aim to establish some form of communication, gather information, ask questions and challenge opinions. • The role of an advocate becomes more rigorous and more transparent in that the advocate must evaluate their approach, and pay careful attention to what questions they ask and how they and others interpret behaviour and communication. • There is much instructed advocacy can learn and gain from the integrity, rigour and accountability process of non-instructed advocacy. • The IMCA process has particular constraints of time limitations and a decision to be made. • IMCA advocacy can be said to be ‘decision led, but person focused’. • The issues of communication and capacity are at the centre of non-instructed advocacy. The challenge is for the advocate to try and establish communication with the person they are supporting using the person’s preferred communication methods. Chapter 4 Understanding how communication develops This chapter provides an understanding of how communication develops. It aims to provide a basis for understanding the foundation of communication, with a focus on those who have multi-sensory impairment. Understanding how communication develops7 Receptive and Expressive Communication In the early stages of communication development we learn to communicate before we learn words, signs, or how to use pictures. We learn to understand that the communication of others has a purpose and meaning. We begin to understand the messages from other people before we use communication expressively. This receptive communication is important for learning expressive communication. In other words, we need to understand communication gives us control before we see the need to communicate expressively ourselves. Expressive communication builds upon receptive communication. The lack of a communication system can further isolate the person. In order to have communication, the person needs a way to communicate, a reason to communicate, and something to communicate about. Communication is critical for social interaction and friendships. When we engage in turn taking activities we are using expressive and receptive communication and there is an exchange of roles between the communication partners as expresser and receiver. Elements of communication 7 There are five key elements of communication: Form- How people communicate Function- Why people communicate Content- What people communicate Communication Partners- Who people communicate with Physical Environment- Where people communicate Form – How people communicate The form of communication is the way in which the person communicates – how they communicate. Those who are deafblind may use one form of expressive communication and a different form of receptive communication. Communication can be categorised as pre-symbolic or symbolic. Pre-symbolic and Symbolic Communication Pre-symbolic communication involves basic forms of communication. These include: movement, eye gaze, touching, pointing, vocalising, gesturing. Symbolic communication involves a more complex system of symbols to convey meaning. This includes: formal language, sign language, printed language and assistive devices. Symbolic communication allows communication about people, places, things and events which are not concrete or in the present time. Function – Why people communicate The function of communication refers to the reason, intent and use behind the communication – why the person communicates. In early stages of communication development functions include: protesting or rejecting, calling or accessing other people, requesting more, directing others. Further stages of development include: greeting, offering, confirming, answering, naming, questioning, commenting or replying and the most complex functions of communication include: joking, lying or persuading. Content – What people communicate Each form and function communicates something; that something involves people, locations, actions, possessions, or feelings. Communication Partners: who people communicate with Communication is social interaction: a two-way process. Those who interact with people with severe communication disabilities must aim to understand and use the forms of communication they use. Physical environment – Where people communicate The environment where the communication takes place has a huge impact upon it. We communicate differently in different environments and with different people. Multi-sensory impairment and communication The development of communication does not follow the usual path for a person who is deafblind, it is highly dependent on the onset of vision and hearing loss and its severity. The person’s tactile sense may be the primary sense used to receive messages. Social relationships and interactions with caregivers are essential and many forms of different communication might be used. When communicating with a deafblind person there may be one form of communication for expression and another one for reception. Those who are deafblind will need to hear, see or feel gestures, objects, signs or words many times before they will be able to use them receptively or expressively. Forms of Receptive Communication We learn receptive communication by showing an awareness and attention to people, activities and places based on a combination of auditory, visual, movement cues and cues of smell and taste. These are called contextual or environmental cues. Although these cues may or may not be used intentionally by the communication partner they are significant to the person with communication difficulty. When cues are used intentionally they enable the person to develop meaning and skills such as awareness, attention and anticipation. They can indicate what is about to happen. Object cues Receptive object cues are real objects, or associated objects which help label an activity. An object cue should clearly communicate the intention of the communication partner to provide information or indicate a directive. For example, a very useful object cue which provides information is a personal identifier such as a ring, beard or necklace; this helps the deafblind person identify who they are. Another example would be a cup indicating hot drink, or beaker indicating cold drink. The cues may first be used as a receptive form of communication but as communication develops may also be used by the person as an expressive form of communication. Touch cues and receptive gestures Receptive touch cues are firm touches that indicate meaning. For example, touch and gestures indicating up, down, more and wait. These cues help get the person’s attention, let them know someone is wishing to communicate with them, let them know what is about to happen, or where they are going, or they can indicate when something is finished or help ask a question. Receptive gestures are movements that express a request, command or give information. Gestures are usually received visually, but can also be learned in a tactile mode for those with little or no vision. Simple gestures may be used in expressive or receptive forms and may take on many different functions or intents. Examples of simple gestures include: extending hand to mean give me, mine, finished, up, want, no, bye. Complex gestures are more abstract and more symbolic in form, this also means their meaning becomes harder to judge and some may be culturally specific. Receptive communication can also include: pictures, photographs, gestures, speech, vocalisations, sign language and written words. Forms of expressive communication Expressive gestures These are the intentional use of motions to convey a request or emphasize something. Some are generic such as shaking the head for no, pointing or nodding; other gestures are representational of an action or object such as pouring. Examples of representational gestures include: eat, pointing, mine, bye, extending a hand or object. In communication development objects are often extended as a form of request, or pointing used to gain another’s attention. Gestures may range from simple to complex. Even when we develop language we continue to use expressive gesture. Symbols, pictures or photographs Pictures can be used as receptive or expressive communication. Those who are blind may use pictures of raised material but these can be difficult to identify and are more abstract, ideally pictures should be used by those with some vision. There are many different types of pictures: photographs, line drawings, coloured drawings. Picture communication is more abstract or symbolic than object communication. Pictures are a portable form of communication used in a book or board. Expressive forms of communication also include: vocalisations, aids or techniques that supplement speech (Augmentative methods of communication) and alternative communication (a method of communication used by a person without vocal ability). Behaviours that challenge as communication8 Communication is one of the most important ways in which we control our environment and influence other people. If a person’s communication skills limit this control, frustration is likely and challenging behaviour may follow. Challenging behaviour is very commonly associated with difficulties around self expression and understanding. Improving communication may be helpful in reducing or preventing challenging behaviour. It is essential to have a good understanding of the ways in which a particular person communicates and of the ways in which information needs to be presented to them to facilitate their understanding. Challenging behaviour may be more likely to occur in situations where people either do not understand what is being expected or are unable to communicate in other ways to control their environment. Other people need to make sure that they are communicating in a way that the person understands. It is also important to respond consistently to what the person is trying to communicate (particularly when their means of communication is unclear). Additional vocabulary may need to be introduced e.g. teaching the person how to ask for a rest. Communication interventions need to include all aspects of the individual’s life and must include those people who regularly communicate to the person. This should include thinking about the communication issues overall and not just around situations where challenging behaviours may occur. Using touch as a form of communication9 In a person who is deafblind, most commonly it is the hands that take over the function of the eyes and ears. Areas of the brain devoted to visual or auditory processing can be reassigned to processing tactile information, providing the hands with more brain power and enabling the hands to have access to objects, people and understanding that would otherwise be inaccessible to them. The hands can become a sense organ, a voice, be used for sign language or gesture; they become skilled in a unique way to express tone, feeling and emphasis of meaning. The hands of the deafblind person are expressive; they take over functions of smiling, eye gaze, facial expressions, they can move excitedly in response to pleasure or interest. • Watch or touch the person’s hands and learn how to read them • Think of the hands as initiators of topics of conversation • Use hand under hand touch to respond to exploration and expressions or feeling (a gentle touch under part of the person’s hand or directly alongside their hand becomes the equivalent of a pointing gesture – this should be non-controlling, a shared experience and should not obstruct the person in their exploration) • Make your hands available for the person to use (place your hands directly under theirs palms up, keep them free of tension for the person to use) • Imitate the person’s hand actions (your hands under theirs) • Invite the person to have tactual access to the environment • Be aware of your own hands as carriers of feelings. Each time we touch we communicate something by the quality of our touch: the speed, lightness, warmth can convey feelings. We also convey intentions: a touch can command, question, exclaim, invite or convey information. We need to learn to touch in an intentional and sensitive way. Making Contact: Intensive Interaction Intensive interaction is an approach to developing communication with those who are still at an early stage of communication. It is a highly practical approach which demands great sensitivity on behalf of the communication partner. The approach works by progressively developing enjoyable and relaxed interaction sequences between the interaction partner and the person doing the learning. These interaction sequences are repeated frequently and gradually grow in duration, complexity and sophistication10. Phoebe Caldwell11 who specialises in this approach suggests it is crucial we engage with people’s own ‘language’ and engage with them in their own way. This engagement may lead to ‘conversations’ based on touch, sound, vibration or movement. The key to engage in these conversations is to search for a stimulus the person engages with and use this to attract the person’s attention, engage with the person and build mutual trust and confidence through listening and sharing. This will help the person move beyond themselves to the world outside. Where an advocate is engaged in longer term non-instructed advocacy, intensive interaction is an approach worth exploring. Seeking advice Seeking the advice of experts in communication cannot be stressed enough. • Get advice from a speech and language therapist, either one assigned to the person or one that has specific knowledge or their disability and communication needs. • Get advice from an expert in dual sensory impairment (contact Sense). • Get support from an interpreter if the person uses BSL. • Get the support from an interpreter if the person’s first language is not English. Summary • Communication concerns the way a person communicates (form) which can be pre-symbolic or symbolic, the reason they are communicating (function), what they are communicating (content) to whom (communication partner) when and where (physical environment). • We learn to understand or receive communication before we can use it expressively. • When communicating with a deafblind person there may be one form of communication for expression and another one for reception. • The forms of receptive communication includes objects, touch cues and receptive gestures. • Expressive communication includes verbal sounds, gestures, symbols or photographs. • Challenging behaviour is very commonly associated with difficulties around self expression and understanding. • The hands of the deafblind person are expressive; they take over functions of smiling, eye gaze, facial expressions, they can move excitedly in response to pleasure or interest. It is vital to learn how to read the hands of the deafblind person and how to interact with them, to present information which is accessible to the hands: to speak the ‘language of the hands’. • Intensive interaction is an approach to developing communication with those who are still at an early stage of communication. • It is important to seek the advice of a communication expert where possible. Chapter 5 The communication process Communication is a process by which people make contact with each other, share experiences, understand the world and find their place in it. People with sensory and multiple disabilities are often isolated from the world around them because their communication goes unrecognised. We have the responsibility to respond to the individual’s communication and try to give meaning to it. The communication process Introduction Communication is a process. It is the means by which people make contact with each other, share experiences, understand the world and find their place in it. Communication helps us get hold of and use information to make choices, decisions and changes. Through communication we can understand and achieve our goals. We all communicate and we all need to communicate. People with sensory and multiple disabilities are often isolated from the world around them because their communication goes unrecognised. Communication is a social and political process whereby meanings are socially constructed and this affects how people relate to one another and are able to influence, persuade, and control others. People with sensory and multiple disabilities are often unequal in the communication relationship, so part of an advocate’s role is to assess the competence of the person they are supporting. Communication is a shared responsibility, it is as much about our ability to understand and communicate as the other person’s ability to do the same. Everybody communicates. We have the responsibility to respond to the individual’s communication and try to give meaning to it12. Interpreting communication Traditional models of communication are based on the notion that one person sends a message and the other person receives it. This understanding of communication is about information processing in which it is assumed that meaning was inherent in ‘signals’ produced by particular behaviours. However, Nicola Grove13 identifies that recent studies of interaction suggest communication is more a process whereby people continuously respond and modify their behaviour so that it becomes difficult to identify who is the sender and who is the receiver. In other words, this model of communication proposes that meanings are socially constructed between people and dynamic. It puts forward the idea that there is never one meaning to communication, rather different interpretations. It then becomes vital to understand how people assign meaning to behaviour and to understand the relationship between inference (what we understand as receivers of communication) and communicative intent (the meaning behind the communication). Inference and communication Inference – what we deduct or understand – involves the use of prior knowledge of the person and their communication, as well as the feeling and attitudes of the participants and the context where the communication takes place. The balance between what is implied and what is explicitly ‘encoded’ in communication varies between situations and individuals. Therefore, we need to take into account who is communicating, to whom, where, when and why. When thinking about people with severe communication impairments it is helpful to think about the form, content and use of communication. Forms of communication – gestures, facial expressions, words – interact with content (what is being communicated) and use (why it is being communicated). Because the forms of communication are likely to be inadequate to realise only a limited set of meanings in people with severe communication impairments the balance is weighted towards inference, and so interpretation becomes a vital and important issue. “…inference is part of the human condition – so the issues raised in interpreting communication by people who have profound intellectual disabilities may not be qualitatively different from those we encounter daily in negotiations with our friends, family and colleagues. However, they are complicated by the problem of determining not only meaning but conscious intent.”14 Communicative Intent Interpreting communication involves inference regarding the meaning of the message and inference regarding the intentional state of the person communicating. Judgements about the person’s intention become part of our final interpretation of the meaning of the message. For example, if someone bumps into you, you are likely to interpret this differently if you think this act was intentional. Intentional communication is directed to a specific goal and purposeful. Our judgements of intent are informed by the context, prior knowledge and intuition. Grove suggests it is helpful to think about four levels of intent: 1. Unawareness of intent: where the body reacts to a situation 2. Goal intentional: where the person communicating is aware behaviour can be directed at a specific goal either people or objects e.g. reaching for an apple 3. Means intentional: where the person communicating is aware of achieving a goal through a tool, such as through another person but there is little awareness of the intentional state of the communication partner. For example the person may push the person’s hand but it is unclear what they want (e.g. the apple) 4. Partner intentional: where the partner is seen as someone who can understand the communicator’s intentions and viewed as someone with their own desires and intentions. The communicator will be aware of the effect they can have on others Identifying Intentional communication ‘When behaviours are seen to be voluntary or purposeful, communication is said to be intentional and we can feel more confident the person is trying to tell us something, especially if meanings are communicated independently and persistently when situations vary’. Grove suggests there are five indicators of communicative intent15 : 1. Alternating eye gaze: where a person looks at you and then at someone/thing else then back at you again (this may not be the case for someone with a visual impairment) 2. Clear waiting for response 3. Active seeking of proximity: a person moves to follow or sit close to someone 4. Systematic variation of behaviour: if you fail to respond the person will repeat, elaborate or change the behaviour 5. Persistence and intensity of behaviour: if a person repeats the same behaviour in different situations and with different people and seems to do so forcefully. These signals indicate awareness that other people are individuals and that you can enter into a dialogue with them. Intention and Interpretation Intention is the product of interaction. By looking at the development of early interaction this will help us understand intent and inference more easily. At the earliest level of communication behaviour is composed of non-verbal movements, facial expressions and vocalisations. Parents infer from this what the child likes or dislikes or wants. Where children have severe communication impairments this behavioural state is very variable. Where goal intentional behaviours occur in the development of early communication, the parent’s behaviour changes and they attribute meaning and intent to their children’s behaviour. The next stage of development is where a child begins to signal their intentions using gaze to check for adult response: following the parent, varying behaviour to get a response. So, in early stages of communication development the communication partner is more likely to rely on inference and intuition. Only once a person has developed goal oriented behaviour can intents and meanings be ascribed. People with sensory impairments and profound communication difficulties, however, will have highly variable and idiosyncratic signals of intent, but it is important to act as if this behaviour has a cause. Grove suggests for people with high support needs the message itself functions as the goal and belongs to both communication partners. Signals will be difficult to clarify and will be interpreted differently by different people and although behaviour may appear purposeful we may still be uncertain about the intention. What becomes vital is a systematic approach to checking the accuracy of our interpretations and those of others. Recognising that intent and meaning are problematic will help us develop a more ethical approach. Guiding principles for non-verbal communication Grove offers guidelines to this process of developing meaning. The guidelines are based on the view that all behaviour is potentially meaningful or communicative. However, she says we tend to react to all behaviours as if they tell us something about a person’s inner state, such as yawns or head turns, but not all of these behaviours are intended to communicate messages to us. Grove’s guiding principles to aiding the understanding of non-verbal communication are: • Meanings are built co-operatively. All participants bring their own hopes, assumptions and experiences to the dialogue. We should aim to make these explicit • The contribution to which the person can make to communication will vary with his or her level of understanding, communicative ability, interest and motivation. We must be sensitive to the fact that the more we assist someone’s communication; the more we influence it and the more rigorous our checks should be. The extent of support from others must be fully specified • Meanings will be more generally valid if: – they are communicated with clear intent – they are communicated independently of physical support – they persist when situations and partners are changed • An interpretation always represents a ‘best guess’ – a hypothesis which needs to be checked and reviewed. Interpretations will vary and evidence must be provided in as full a form as possible to enable genuine and open discussion to take place. Summary • Communication is a process. It is the means by which people make contact with each other, share experiences, understand the world and find their place in it. • Communication helps us get hold of and use information to make choices, decisions and changes. Through communication we can understand and achieve our goals. We all communicate and we all need to communicate. • Communication is a social and political process whereby meanings are socially constructed and this affects how people relate to one another and are able to influence, persuade, and control others. • Communication is a shared responsibility, a two-way process: as much about our ability to understand and communicate as the other person’s ability to do the same. • Everybody communicates. There is no such person as a person who does not communicate. We have the responsibility to respond to the individual’s communication and try to give meaning to it. • Communication is a process whereby people continuously respond and modify their behaviour this model of communication suggests meanings are socially constructed between people and dynamic. • This approach suggests there is never one meaning to communication, rather interpretations. It then becomes vital to understand how people assign meaning to behaviour and the relationship between inference and communicative intent. • Because the forms of communication are likely to be inadequate to realise only a limited set of meaning and functions in people with severe communication impairments the balance is weighted towards inference. And so the interpretation becomes a vital and important issue. • Intention is the product of interaction. We need a systematic approach to checking the accuracy of our interpretations and those of others. Recognising that intent and meaning are problematic will help us develop a more ethical approach. • There are five indicators of intentional communication: alternating eye gaze, clear waiting for response, seeking to be near the communication partner, systematic variation of behaviour, and persistence of intensity of behaviour. Chapter 6 Older people, deafblindness and communication Among people over the age of 75 the incidence of dual sensory loss is much higher than in the rest of the population. This chapter tells you how to recognise if an older person has a dual sensory loss and how to communicate effectively with them. Older people, deafblindness and communication16 Introduction It is not known exactly how many older people have a dual sensory loss. Deafblindness is often a hidden disability and problems of definition and assessment make collecting statistics difficult. What is clear is that among people over the age of 75 the incidence is much higher than in the rest of the population. Studies show that: • One in twelve of us will become blind or partially sighted by the time we are 60. This rises to one in six by the time we reach 75 • 55% of people over 60 are deaf or hard of hearing • 35% of visually impaired people report significant hearing difficulties • About 50% of those over 80 who are visually impaired also have a significant hearing loss • Older people with vision and hearing loss from minority communities are poorly represented in statistics but it is likely that the incidence is similar to that of white British communities. These figures show how common dual sensory loss is among older people. Effects of deafblindness in older people Many older people with a hearing and vision loss don’t think of themselves as deafblind. They may think that sensory loss is just one more effect of old age along with mobility problems, memory loss, illness or depression – and it often is. Their hearing and vision loss may have crept up on them slowly so they only gradually realise that something is wrong. They may see some things, but not others. They may hear in some situations, but not others. They may use phrases such as: “I don’t hear too well” or “I’m having problems with my eyes”. And yet the everyday difficulties they describe are not just to do with ageing but are the typical effects of deafblindness. Older people who can’t see or hear fully what is going on around them may find the physical and social environment confusing or even hostile. The effort and skills required to go out or engage in social activity can be very tiring and may lead to increasing withdrawal and isolation. There is also an emotional reaction to dual sensory loss. People are cut off from the world around them as they used to experience it and this can lead to feelings of loss, frustration, anger and grief. People’s inability to hear, for example, may be defined as confusion or stupidity. Deafblindness is often not identified in older people; it is sometimes dismissed as part of getting old and in some cases even misdiagnosed as dementia. Often professionals use a standard test of questions to diagnose dementia and do not accommodate any potential communication impairment. Case study – Mary Mary was a deafblind lady in her eighties. She had been profoundly deaf from the age of twelve and her vision had been deteriorating since she was in her forties. Her receptive method of communication was lip-reading and her expressive communication was speech. Mary had been leading quite an independent life in warden controlled accommodation, when her vision began to deteriorate further due to a brain tumour. She had an operation to remove the tumour, believing that this would help to restore some vision. Unfortunately the operation left her with no vision at all. When she was discharged from hospital, her total dual-sensory loss meant that she was unable to return to her own home. She moved into a residential home for older people. A new method of communication was introduced using a set of wooden letters to spell out each word by touch. This was very slow and Mary could only receive three or four-letter words at a time. Due to difficulties in communication and disorientation within new surroundings, Mary became increasingly confused over the next few months and began to experience hallucinations. She made comments to staff about being made to sleep on the floor instead of on her bed. On another occasion she thought that she had been sitting in a removal van for hours. She started to hold two-way conversations with an imaginary person called Charlie. She believed that other people were able to hear and join in with these conversations. A referral was made for a psychiatric assessment. When the psychiatrist visited Mary he wanted to carry out an assessment by asking her a set of questions, although with the wooden letter communication, this form of assessment was impossible. It was vital that Mary was provided with more mental stimulation, otherwise her grip on reality would slip even further away. Additional communication support was imperative to avoid rapid deterioration in her mental state. Sensory deprivation experiments were carried out on adults by Hebb and colleagues at McGill University in the 1950s (Bexton et al, 1954; Heron, 1957). When they were almost completely cut off from normal sensory stimulation, they soon began to experience extreme psychological discomfort. They reported hallucinations and could not usually tolerate their confinement for more than three days. Additional funding for communication support was provided by the local authority, and with this extra support Mary’s communication improved and a reversal took place. Mary not only returned from her inner world, but she began to take control of her own situation. Along with the staff at the home, her Communicator Guide and her family she continued to find her own new and improved ways of communicating, and the hallucinations stopped. In addition, older people with sensory impairments and communication difficulties often lose motivation (this can particularly occur in a residential setting where they may lose some of their identity and become passive); they develop a learned helplessness where communication is a struggle and it is easier for them to hand power to others. If they had better communication support and time was taken over communicating with them then that deterioration may not occur. Other kinds of health problems can follow from vision or hearing impairment, such as falls, burns and scalds and other accidents. Also an inability to carry out things in daily living and pleasurable activities may be curtailed and social and family relationships may suffer. Ability to participate in civic life may be affected. Exclusion and even isolation and psychological problems may follow. There is some evidence that symptoms of depression are higher in people with hearing problems than in people without. • If you are deaf or hard of hearing and can’t hear what someone is saying, you watch their lips and facial expressions for extra clues. But if you also become blind or partially sighted, how will you understand what is being said? • If you are a blind or partially sighted person who is used to travelling independently, you depend on your hearing. But if you become deaf or hard of hearing and can’t hear or see the traffic, how will you know when it’s safe to cross the road? • If you can no longer easily see or hear the television, listen to the radio, read your letters, use the phone or engage in conversation you become isolated from people, events and society. This sensory deprivation can lead to extreme levels of boredom, stress, depression Recognising deafblindness in older people It is vital we recognise the effects of deafblindness and offer support and services to meet those needs. Be aware of the language a person uses about themselves and adapt your own to reflect what they are comfortable with. A person with hearing difficulties may: • Complain that others mumble or speak too quickly • Ask others to repeat what they’ve said • Ask others to speak louder • Repeat words to verify what’s been said • Find it difficult to keep up conversations in noisy environments or in a group • Have difficulty understanding unfamiliar people or accents • Get tired in conversations because of the need to concentrate • Withdraw from situations where conversation is expected • Need TV or radio volume louder than is comfortable for others • Find it hard to hear on the telephone • Use a hearing aid or loop system. A person with visual difficulties may: • Find it hard to identify objects or familiar faces • Need more light for reading and other activities • Find it hard to cope with glare, e.g. bright sunlight • Sit unusually close to the TV • Have unusual reading habits, e.g. holding a book close to the face • Give up reading, watching television or other activities • Be unable to locate small objects • Spill food or knock over cups • Wear mismatched colours or have stained clothing • Have difficulty moving around – walking slowly or with less confidence • Bump into things • Have difficulties caused by changes in light levels • Have difficulties with unfamiliar routes or places. Think dual sensory • Every time you are supporting an older person, ask yourself whether their needs could be related to deafblindness. • Make sure you are trained to recognise deafblindness and its effects. • Make sure you use good communication tactics which are useful with all older people. Communicating effectively with older deafblind people Before you start: • Make sure you have the person’s attention • Always tell a visually impaired person that you are there • Ask the person what will make communication effective and do that. Where to talk: • Between 3 – 6 feet apart at the same level depending on the person’s vision • Good light is important. Face the light so that your full face can be seen • Avoid background noise. Turn it off or move somewhere quieter. Clear speech: • Speak clearly • Speak a little more slowly than usual, but keep the natural rhythm of speech • Speak a little louder, but don’t shout as this will distort your voice and lip patterns • Try to make your lip patterns clear, but don’t over-exaggerate • Keep your face visible and your head still. Don’t smoke, eat, chew gum or cover your mouth with your hand • Focus on the person you are talking to. If you are using an interpreter, always talk directly to the deaf person, not the interpreter. Help the other person to understand: • Don’t hurry, take your time • If necessary, repeat phrases. If this doesn’t work, try re-phrasing the whole sentence. Some words are easier to lip-read than others • Make the subject clear from the start and if you change the subject, make sure the person knows • Use gestures and facial expression to support what you are saying • Be aware that if a person is smiling and nodding it doesn’t necessarily mean they have understood you • Be aware that the effort of concentration on communicating can be hard work for an older deafblind person and cannot be maintained for long periods of time • Assessments are likely to take more than one visit and extra time will need to be allocated • Be ready to write things down, using an A4 note pad with a black marker pen. Interpreters Some older deafblind people use specialist forms of communication and will require communication support. You will need to know what form of communication the deafblind person uses and book appropriate interpreters well in advance. Communication methods may include: • British Sign Language • Deafblind manual alphabet • Block • Lip-speaking • Speech to text • Community languages. Summary • Over the age of 75 the incidence of deafblindness is much higher than in the rest of the population. • In older deafblind people their dual sensory loss may go unrecognised as a condition needing specific support. • Many older people with a hearing and vision loss don’t think of themselves as deafblind. • People’s inability to hear, for example, may be defined as confusion or stupidity. Deafblindness is often not identified in older people; it is sometimes dismissed as part of getting old and in some cases even misdiagnosed as dementia. • Be vigilant when supporting older people for signs of deafblindness and adapt your communication with them. • Seek specialist advice whenever possible. Chapter 7 Practical strategies for communication and information gathering This chapter examines how we understand, interpret, observe, record and evaluate communication. It also explores how we gather information, use intelligent questioning, investigate and weigh options against what has been discovered about the person’s wishes and preferences. Introduction IMCA work is very time limited, and even in broader forms of non-instructed advocacy time is not infinite. Planning is the key to establishing communication of any sort with the person you are advocating for and to get the most from your meetings with the person. We have already established that we have a shared responsibility to identify and respond to a person’s communication and give meaning to it. This chapter will examine how we understand, interpret, observe, record and evaluate communication. It will also explore how we gather information, use of intelligent questioning, investigate and weigh options against what has been discovered about the person’s wishes and preferences. Finally, it will look at how we evaluate our practice and build our knowledge and confidence in non-instructed advocacy. Supported decision making 17 The supported decision making model starts from the following assumptions: • All human beings communicate • All human beings express choices and preferences about their lives • These choices and preferences are the building blocks of decisions • When people’s choices and preferences lead directly to action this means someone is controlling their own life, even if they need substantial help to make choices happen. The factors that affect a person’s ability to influence decisions include: • How someone communicates • The extent the person understands information and what is expected of them • The extent to which people can retain and process information • Different personal values and attitudes • Lack of motivation and experience. These factors relate to the functional test of capacity outlined in the Act. There are a number of challenges and barriers which are imposed upon people and limit their control: • How much time is available to make choices • How the information is presented • Power relationships with services and the person concerned • Nature of relationships with supporters • Limited opportunities to make choices • Staff skills to enable choices to be made • Undiagnosed sight or hearing impairment • People being labelled as challenging and having their views dismissed as a result • Assumptions about the person’s abilities • Lack of awareness of cultural differences. There are five key issues an advocate needs to consider in the process of non-instructed advocacy: 1. What information is relevant to the decision and how can it be relayed in the most appropriate way? 2. What is the person’s level of understanding and what approaches can aid their understanding? 3. What concepts are involved in the decision and will the person understand them? Are there any related concepts which could provide a starting point? For example: if the issue is about a change of accommodation, might it be possible to ascertain how happy the person is with their present accommodation? 4. What questions do you need to ask and how might you go about this? 5. What is the best way to interact with, observe, and record responses? Gathering information and intelligent questioning Our starting point is to build up a picture of the decision needing to be made and the key issues involved. We need to be clear what has to be decided, who is involved, what courses of action are available and the timescale of the decision. There are key items of information vital to assessing the situation in which you may be asked to advocate: • What is the decision needing to be made • What are the alternative courses of action • Who is making the decision • What is timescale • What methods of participation has the decision maker has tried • The key people the advocate needs to talk to, their range of views, and what their views are and why • What evidence needs to be collected • What records need to be seen • Is there a key person who can communicate with the person. The individual may have a person centred plan which should record how the person communicates, what they have done so far in their life and what their life has been like. It should also provide information about: what they do now, where and who supports them. What involvement they have in decisions, what their abilities and interests are, what they enjoy or dislike, goals for the future in the short, medium and long term and how these are monitored and what their health care needs are and what can be improved. Person Centred Plans should be sought by advocates as part of the records or files they need as they will be useful indicators of the person’s needs and wishes. Planning to meet the person18 . In order to get the best from meeting the person in what may be a very time-limited situation an IMCA needs to get as much prior information about the person’s communication and comprehension as possible and record who gave this information. The better the picture you get about the person, the more you will be able to get out of the meeting. 1. Be clear about the meeting • What are the aims or purpose of the discussion? • What are the key questions you need to ask and how should you ask them? • What information has already been presented to the person, by whom and how? • What information do you need to present and how? • What medical factors are likely to affect the meeting (timing of medication)? • What are the key factors affecting the person’s communication? • Where and when is the best place and time for this meeting to take place? • How will you record your interactions or observations during the meeting? 2. Identify the level of understanding • What is the person’s level of understanding? – Some difficulties with complex language – Understands simple sentences – Understands single words – Understands tone of voice – Understands simple signs – Understands pictures/objects of reference • Can they understand what or where questions? • Can they understand who, why or when questions? • Can they understand language or concepts relating to past, or future? • What speed do they need their communication? 3. Identify the level of intentional communication • What is the person’s level of intentional communication in everyday situations? – Looks at something then at you – Gestures, reaching, pointing – Changes behaviour to make you understand what is wanted – Purposeful movement to find or be near someone or something – Persistent behaviour – Other strategies. 4. Identify the person’s means of expression • Are words or vocalisations used? • Are gestures signs or symbols used and are they clear? • Does the person repeat what others say? • If single words or gestures are used give examples • Does the person link two words or gestures together? 5. Gauge functional communication • Can the person indicate yes or no? How do they do that? • Can the person indicate positive or negative feelings? How do they do that? • How do you know the person is happy, excited, at ease, unhappy, distressed or in pain? • What level of hearing does the person have? • What level of vision does the person have? • Does the person recognise: written words, spoken words, symbols, pictures, signs or objects of reference? • How does the person feel about the meeting: unaware, confident, nervous, uninterested, and anxious? • What strategies does the person need to interact: pausing, seating, physical support, pictures, objects? • What motivates the person to communicate? • Is the person able to direct others? • Does the person initiate communication? • Where and when is the person most communicative? • With whom do they communicate most? • Should closed (yes/no) or open ended questions be asked? • What resources will you need to communicate with the person? • What key words (signs/symbols) will you need to use to convey the information? • Does the person understand these concepts? • How does the person attract attention or ask for something which is not there? • How do they access their communication system? 6. Establish social interaction • Can joint attention be established? How? • At what level does the person interact with others? • How does the person respond when others initiate interaction? • Does the person take turns, copy or share? • How do people say hello to the person? • People with a fundamental level of communication – reflex responses, those who react to strangers or strange situations, people who recognise patterns, anticipate events and show an awareness of others; • Can communicate about interest, comfort or distress, degree of pleasure, surprise and likes and dislikes, and; • Can be consulted about immediate reactions to positions or movements, food, people and style of interaction, activities, temperatures, places and noises. • People who have early stages of communication – turn taking, responding to name, making the first move, showing intention, responding to simple instructions; • Can communicate about preferences if presented appropriately, immediate choices and selections from concrete objects, past and future using objects, photos or sound and may answer closed questions. • They can be consulted about preferences, choices of food, events, helpers, leisure and reactions to personal experiences. • People who can speak in sentences, sign fluently, use a communication aid or write • Can communicate feelings, opinions and preferences including hypothetical situations and answer open questions. • They can be consulted about housing, medical situations19. Meeting the person Even with information about the person’s communication it can be daunting for an advocate to meet the person for the first time. How should you introduce yourself? What kind of introductory ‘conversation’ can be established? What exactly should you do? • Access the support of a key carer or member of staff who knows the person well and how they communicate, observe them relaying the information or interacting with the person, observe their questioning • Access the support of a specialist: a speech and language therapist, a sensory impairment specialist, for example • Access the support of an interpreter if the person uses sign language or another language • Be prepared to be flexible and creative. Take something with you to make contact with the person, or a personal identifier e.g. a ring or scarf. Take a big pad and a black pen • In longer term non-instructed advocacy don’t be bound by sitting in a room, do something, go out. See the person in different situations, doing different activities • Don’t be afraid to get it wrong: try something else • If the person has a multi-sensory impairment you will need to get physically close to them so they can use any residual hearing/vision or use touch • Depending on the person’s level of communication and comprehension you could use tools of representation such as a small toy house to represent house and moving • To initiate a conversation it is helpful to have an object of focus (whether this is related to the key issue or not) • Communication is idiosyncratic, observe closely • Don’t pretend to understand what the person is communicating. Don’t try and assess what the person understands, particularly if you have a short time with them. It is better to focus on what the person is doing and the communicative intent behind it • Try to ensure the person knows what you are there for if possible and how long you will be with them, whether you will come again and that they can rest or stop at any time • Make sure the person gets something out of the meeting • Ensure the environment is conducive and that the meeting takes place at the right time for them, not when they have had their medication, for example. Make sure they are comfortable physically and have any equipment they might need • Don’t try and introduce a new system of communication, accept a total communication approach needs to be used – sounds, gestures, signs etc – and look for any clues of communication • If a person has a visual impairment, don’t rely on facial expression • Use clear and unambiguous language, go slowly, pause and wait of any responses • Specify in advance the most important questions you would like to ask the person and any key words/signs/symbols you might need to use (does the person understand these concepts?) • How are you going to record your meeting, video, notes following meeting, notes during meeting, second observer (volunteer perhaps?). • When communication is difficult or complex only a limited amount of information can be conveyed because the person will have very limited receptive skills. The person may accumulate information like a jigsaw: some pieces fit, some are missing, some in wrong place, some from another jigsaw – it is important to return and go over the information to see what is right, get rid of irrelevant information, and add more. Help the person build up a clear picture. Observing communication Where the person has limited or complex communication, it may be useful to identify someone who knows the person well and observe their interaction or ideally them asking the questions you need answering. Making information accessible often means the information should be presented by the people the person knows and trust in a manner they can access it. It is more effective and will increase the control held by individuals if the ‘discussion’ includes people who are closest to the person and who are familiar with how they communicate. Watch the person in their environment, how they interact with it, and people around them. Observe turn taking, body language feedback, facial expressions, and vocalisations. Evaluating your meeting with the person Once you have met the person you need to evaluate your meeting with them or your observation of them. • Write a brief summary of any key points of the meeting • What information do you think the person understood? • What is your evidence? • What do you think the person was communicating to you (or their key communicator)? • What was the level of participation in the discussion? • So far as you can tell, was the response typical of person’s usual pattern of communication , better or poorer than usual (you may need to refer back to key carer)? • Was any support provided to help the person communicate? Physical prompting, verbal prompting, etc? • Were there any indications the person was communicating intentionally?20 Interpreting behaviour21 It is vital to have a systematic approach to the validation of communication – to check interpretations of communication, ensure it is accurate and that appropriate approaches are used. We must build up a shared communication profile of the person through the systematic collection of evidence. When we recognise that intent and meaning are problematic we can identify the constraints of communication and take a more ethical position. When you have met the person and when you have gathered information from others and read notes, you will have gathered views which may support one interpretation of the person’s wishes. At this point critical thinking is needed about the evidence for such interpretations. We can ask: • What interpretation has been made about the person’s wishes or feelings? • What supporting evidence is there for these interpretations? • Has this interpretation been brought out in other situations? • Do other people agree with this interpretation? • What evidence is there to support a different interpretation? • Do you need to gather any further information or evidence? Weighing up evidence In non-instructed advocacy, and in particular in IMCA where communication is open to interpretation and influence and where the decision to be made is significant, keeping a strong base of evidence is essential to good advocacy. You will see throughout this process we have looked at systematic ways to gather information, observe and record, and a systematic process for evaluating each step of the way. Towards the end of the IMCA process you will have gathered a significant amount of information: • Information about the decision to be made, the options available and the consequences of those options • Written information from files and records • Records of discussions and meetings with family, care workers and other staff • Evidence of communication with the person and interpretations of communication • Evidence of the person’s wishes, beliefs and values. Within this information there may be conflicting opinions. Many IMCA schemes have developed their own templates for writing final reports for the decision maker. All of these included: a summary of the case and details of who was contacted and the information provided. There is variation as to whether the reports should present any recommendations or findings. The kinds of questions an IMCA asks, the kinds of evidence gathered and the process of evaluation undertaken in the process does focus and structure the outcome. An IMCA should look for clear evidence to back up or challenge an emerging opinion. In some cases a clear picture will appear where recommendations can be made; in others an IMCA may only be able to present their findings. It may be at the end of the process there is no clear conclusion which can be reached about what the person’s wishes might be. An IMCA is not being asked to make a decision, but present evidence about the person and what their needs and wishes might be. We need to ask: • What do the client’s wishes seem to be and why do we think this (evidence)? • What do other people think and what is their evidence? • Is there an emerging path? • Are there opposing or complementary courses of action? • What has been identified and how does it relate to the decision? Ending the case The IMCA pilot study evaluation pointed out that it was not always clear when the case was closed. It highlighted that very few decision makers gave a formal response to the final report despite requests to do so. The Code of Practice now requires the responsible body (local authority or NHS) to record an IMCA’s involvement in a case and any information provided to help decision making. They must also record how the decision maker has taken into account the IMCA’s report and information as part of the process of working out the person’s best interests which should include reasons for disagreeing with that advice, if relevant and significantly the decision maker must inform the IMCA of the final decision and the reason for it. An IMCA may disagree with the decision in which case a settlement should be sought through discussion and negotiation, or through the responsible body’s formal procedures for dispute. Alternatively if there is no other way of resolving the disagreement the decision may be challenged in the Court of Protection. In many situations there will be unresolved issues that may need referral to generic advocacy schemes. For some IMCA cases this might mean referral from one part of a scheme to another, in this situation it is advisable to have a protocol for such situations which clarifies each specific role and need. Evaluating your practice Continuous practice may lead you to begin to assume things about a person’s communication. The more practised we are, the more likely we are to do this and the more we need to guard against it. Reflective practice is essential. Use supervision, mentoring or other means of support to reflect on your practice. Building a knowledge base and building confidence The more you undertake non-instructed advocacy the more confident you will become. Knowledge of communication development and approaches to communication are very useful to draw on, but as an advocate you are not an expert in communication. However, you do need to become an expert in the process of non-instructed advocacy using a clear, accountable and thorough evaluative process such as we have outlined. IMCA work is challenging, you are likely to encounter a range of disabilities with a range of communication needs and challenges. By using these processes and building our skills and knowledge we can build a practice base for good quality non-instructed advocacy which is transparent and accountable. Summary • The supported decision making model underpins the process for decision making outlined in the Mental Capacity Act. • The key issues for an advocate are: information about the decision, level of understanding of the person, the concepts involved, the questions needing to be asked, and how best to interact with, observe and record the process of communication. • The main steps to this process of communication with the person are: gathering information, intelligent questioning, planning to meet the person, discussion, observation checking interpretations and summarising the process. • Where the person has limited or complex communication, it may be useful to identify someone who knows the person well and observe their interaction or ideally them asking the questions you need answering. • When you meet the person be clear about the purpose of the meeting, their level of understanding, identify their intentional communication and their means of expression, gauge their functional communication and establish some social interaction. • Make sure you meet them at the right time and the right place with the right kind of support. • Specify in advance the most important questions you would like to ask the person and any key words/signs/symbols you might need to use (does the person understand these concepts?). • Think dual sensory, use the checklists to identify where a person may have a hearing or visual loss and plan your communication approach. • Record and evaluate your meeting with the person, and interpretations of communication – keep an evidence base. • Identify any conclusions. Evaluate your practice. Be confident that practice builds expertise but guard against complacency or pre judgement. Chapter 8 Operational and ethical dilemmas in non-instructed advocacy This chapter examinines some of the operational and ethical issues encountered in IMCA and other forms of non-instructed advocacy. It identifies some strategies for remaining person-centred, keeping communication at the forefront of advocacy and weighing up conflicting evidence. Operational and ethical dilemmas in non-instructed advocacy Key Issues in Independent Mental Capacity Advocacy The IMCA pilot evaluation22 and the 1st Annual IMCA report identified a number of ethical and operational issues facing IMCAs. Some of which are very relevant to good practice in communication and person-centred approaches. These can be grouped as follows: • Number of ineligible referrals, involvement of family and friends and the nature of the decision • Client group, communication and ascertaining the wishes of the client. Our Capacity to Communicate Project asked people to submit detailed case studies as part of the training and through these we also identified further key issues in IMCA work: • Importance of communication in order to keep person centered in this new decision-led advocacy • Identification of best approach to communication (planning and questioning) • Identification and impact of dual sensory impairment • Developing a systematic approach to evaluation of person’s participation and communication; and the IMCA advocacy process in general • Lack of awareness of decision makers around duties to enable participation. The final report of the project, available separately, details these findings and illustrates them with case studies. Family and Friends IMCA is aimed at providing representation for those without family or friends (unbefriended). In the 1st Annual Report 40% of referrals were ineligible because the person was befriended. It would appear from this that decision makers need to be more aware of people involved in the client’s life before referring to an IMCA service. In the pilot study, about two thirds (63%) of eligible referrals had family or friends where it was not practicable or appropriate to consult. These situations encompassed broader reasons than outlined in the draft code of practice and raises issues for IMCAs on whether to consult family and friends in these situations. Some IMCAs felt the decision maker was describing family or friends as inappropriate to ensure the person received an IMCA service or to exclude ‘difficult’ family members and there was a concern about the use of the word ‘not appropriate’ to consult in this context. The evaluation of the pilot concluded it may be useful for the IMCA to consult with some family or friends where the decision maker has decided not to and in the pilot many schemes did so. In some case studies submitted as part of the Sense Capacity to Communicate Project, there were friends and family on the periphery of the situation who did not want to advocate for the person, but whose knowledge of the person and involvement in the IMCA process were important. Assessing Capacity The second common reason for ineligibility is that the client had capacity. During the Sense training and written assignments many IMCAs discovered on referral that a thorough test of capacity had not been carried out. In particular communication specialists were rarely involved and that not all reasonable practical steps to enable the client to participate had been tried. In other words, decision makers were often not carrying out what was required of them in the code of practice namely: that all practical and appropriate steps are taken to enable the person to make that decision themselves. Nature of the Decision In the IMCA pilots, 79% of the decisions were about change of accommodation. This figure is also reflected in the 1st Annual IMCA Report where change of accommodation is still the overwhelming reason for referral (nearly 60%). The 1st IMCA Annual Report identified that only 13% of all referrals concerned serious medical treatment. There are a number of key issues an IMCA may consider around serious medical intervention23, which are generally reflected in the Mental Capacity Act. The Act is clear that no one can be labelled ‘incapable’ simply as a result of a particular medical condition or diagnosis and that ‘Best interests’ goes beyond the person’s medical interests. Doctors must adhere to the principles of the Act and carry out their decision in the person’s best interests as defined in the Act. The issues an IMCA may consider are: • Any intervention by doctors or the medical profession should be to restore health • Considerations need to be given to quality of life, in particular where quality of life would be so poor following medical treatment that intervention cannot be justified • There should be a holistic approach to quality of life – not purely clinical data • Quality of life includes: physical, material, social, emotional, and spiritual abilities and interests • Quality of life is related directly to what an individual believes about their direction and status – well being and satisfaction is derived from lived experience • Any judgement on quality of life should compare the condition of the person before to what is expected after treatment not a generic model of health to a non-disabled person • A doctors decision should be based purely on health, not their role to assess value or worth of treatment • Casting doubt over whether someone’s life is worth living can introduce questionable assumptions and may lead to discrimination • Problems of identifying a threshold for quality of life ignores actual, lived experience which is highly individual • The existence of a complex disability and lack of capacity does not justify different standards of medical treatment • If there is uncertainty the patient’s disability should not be grounds for withholding treatment. In the appendix we provide some helpful protocols for the kinds of questions it may be helpful for an IMCA to ask around decisions concerning change of accommodation and serious medical treatment. Client group, communication and ascertaining wishes and preferences of the client Just over a third (36%) of all referrals in the IMCA pilot concerned people with learning disability; and another third (32%) people with dementia. Of all eligible referrals in the pilot IMCA programme 22% had no formal language, this includes: • People using: gestures, facial expressions and vocalisations (10%) • Those using pictures, symbols or Makaton (6%) • Those who had no obvious means of communication (6%) • A further 8% had ‘other’ means of communication which was not spoken language. In the 1st Annual Report these figures are very similar (37% dementia, 30% learning disability). It is fair to assume that many of these would have had additional sensory impairments and possibly dual sensory impairments, although this was not recorded. The report also identified that 1.5% of all serious medical treatment referrals concerned issues with hearing or sight. Sense would argue that it is vital to record both in referral and for statistical purposes those that have a sensory impairment because of the significant impact this has upon the person’s communication and subsequent needs. IMCAs need to build on their existing skills of enabling people to participate in decision making wherever possible and develop their skills in communication. IMCA demands a new approach to advocacy, one which is decision focused. One of the key questions the IMCA pilot study raised was whether the primary relationship was with the client or decision maker. This form of advocacy places new constricting parameters on advocates. Summary • Advocates need to develop their skills at understanding and enabling communication in order to increase the likelihood of ascertaining the wishes and preferences of the person they are representing. • It is useful to develop a protocol for the kinds of questions to ask in relation to the two main forms of IMCA advocacy: change of accommodation and serious medical intervention. • Identify people for whom communication is affected by a sensory disability, to identify where specific communication approaches might be needed to involve the person in the decision in the best way possible, and where cognitive ability may be underestimated where communication needs have been overlooked. • An IMCA caseworker should look for clear evidence to back up or challenge an emerging opinion. In some cases a clear picture will appear where recommendations can be made; in others an IMCA may only be able to present their findings. • Independent mental capacity advocacy is decision led but person focused – at a minimum IMCA protects and at its best it empowers. • The IMCA caseworker has the right to challenge a decision if they believe the decision-maker has not paid sufficient regard to the information or advice provided. Chapter 9 Advocacy, communication and good practice This chapter aims to summarise the learning in this publication and aims to identify good practice around IMCA and non-instructed advocacy, particularly around communication. Advocacy, communication and good practice The Mental Capacity Act The Mental Capacity Act 2005, covering England and Wales, provides a statutory framework for people who lack capacity to make decisions for themselves, or who have capacity and want to make preparations for a time when they may lack capacity in the future: • A person must be assumed to have capacity unless it is established that they lack capacity • A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success • A person is not to be treated as unable to make a decision merely because he makes an unwise decision • An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. The Act sets out a two stage test of capacity. The first stage requires proof that the person has an impairment of the mind or brain, or some sort of or disturbance that affects the way their mind or brain works. The second stage of the test is functional focusing on how the decision is made. A person is unable to make a decision if they are unable to: understand, retain, and use information and communicate their decision. Before deciding that someone lacks capacity to make a particular decision, it is important that all practical and appropriate steps are taken to enable them to make that decision themselves. The decision maker must: provide all relevant information, communicate in an appropriate way, make the person feel at ease and support the person. Any decision made on behalf of a person who lacks capacity must be done, or made, in that person’s best interests. The Code of Practice provides a best interests checklist which includes: equal consideration and non-discrimination, consideration of all relevant circumstances, whether the person might regain capacity and permitting and encouraging participation. Independent Mental Capacity Advocacy The Mental Capacity Act (2005) states that everyone has the right to make their own decisions and should be assumed to have the capacity to do so. Any decision must be made in the person’s best interest and be the least restrictive intervention. The Mental Capacity Act has enshrined the right to advocacy for those people who are unable to give a clear indication of their views in certain circumstances An IMCA’s role is to safeguard the best interests of the person, they should: • Support the person to take part in the decision-making process • Find out what they can about the person • Ensure every effort is made to ascertain the likely wishes of the person; promoting their preferences and raising issues on their behalf • Find out what options are available • Make sure information is collected and properly considered • Seek a second medical opinion if appropriate • Be able to challenge the decision maker if need be. IMCAs should be confident communicators, investigators and evaluators. On average a third of all referrals will be people who do not use formal language as a means of communication. There are skills an IMCA can acquire to work with the range of clients their role demands. An IMCA should also seek specialist support and advice on the particular communication needs of their client. Non-Instructed Advocacy Non-instructed advocacy can be defined as taking affirmative action with or on behalf of a person who is unable to give a clear indication of their views or wishes in a specific situation. The non-instructed advocate seeks to communicate with the person, uphold their rights, ensure fair and equal treatment and access to services, and ensure that decision are taken with due consideration for the person’s preferences and perspectives. The person should be at the centre of the process, the advocate should act as watchdog, investigator and negotiator. Non-instructed advocacy has a different set of demands. The person cannot instruct their advocate, the advocate may observe, identify communicative behaviour, aim to establish some form of communication, gather information, ask questions and challenge opinions. The role of an advocate becomes more rigorous and more transparent in that the advocate must evaluate their approach, and pay careful attention to what questions they ask and how they and others interpret behaviour and communication. There is much instructed advocacy can learn and gain from the integrity, rigour and accountability process of non-instructed advocacy. The IMCA process has particular constraints of time limitations and a decision to be made. IMCA advocacy can be said to be ‘decision led, but person focused’. The issues of communication and capacity are at the centre of non-instructed advocacy. The challenge is for the advocate to try and establish communication with the person they are supporting using the person’s preferred communication methods. Understanding how communication develops Communication concerns the way a person communicates (form) which can be pre-symbolic or symbolic, the reason they are communicating (function), what they are communicating (content) to whom (communication partner) when and where (physical environment). We learn to understand or receive communication before we can use it expressively. When communicating with a deafblind person there may be one form of communication for expression and another one for reception. The forms of receptive communication include objects, touch cues and receptive gestures. Expressive communication includes verbal sounds, gestures, symbols or photographs. The hands of the deafblind person are expressive; they take over functions of smiling, eye gaze, facial expressions, they can move excitedly in response to pleasure or interest. It is vital to learn how to read the hands of the deafblind person and how to interact with them, to present information which is accessible to the hands: to speak the ‘language of the hands’. Challenging behaviour is very commonly associated with difficulties around self expression and understanding. Intensive interaction is an approach to developing communication with those who are still at an early stage of communication. The Communication Process Communication is a process. It is the means by which people make contact with each other, share experiences, understand the world and find their place in it. Communication helps us get hold of and use information to make choices, decisions and changes. Through communication we can understand and achieve our goals. We all communicate and we all need to communicate. Communication is a social and political process whereby meanings are socially constructed and this affects how people relate to one another and are able to influence, persuade, and control others. Communication is a shared responsibility, a two-way process: as much about our ability to understand and communicate as the other person’s ability to do the same. Everybody communicates. There is no such person as a person who does not communicate. We have the responsibility to respond to the individual’s communication and try to give meaning to it24. Communication is a process whereby people continuously respond and modify their behaviour this model of communication suggests meanings are socially constructed between people and dynamic. This approach suggests there is never one meaning to communication, rather interpretations. It then becomes vital to understand how people assign meaning to behaviour and the relationship between inference and communicative intent. Because the forms of communication are likely to be inadequate to realise only a limited set of meaning and functions in people with severe communication impairments the balance is weighted towards inference. And so the interpretation becomes a vital and important issue. Intention is the product of interaction. We need a systematic approach to checking the accuracy of our interpretations and those of others. Recognising that intent and meaning are problematic will help us develop a more ethical approach. Older people, deafblindness and communication Over the age of 75 the incidence of deafblindness is much higher than in the rest of the population. In older deafblind people their dual sensory loss may go unrecognised as a condition needing specific support. Many older people with a hearing and vision loss don’t think of themselves as deafblind and their condition is often misunderstood by others. People’s inability to hear, for example, may be defined as confusion or stupidity. Deafblindness is often not identified in older people; it is sometimes dismissed as part of getting old and in some cases even misdiagnosed as dementia. Be vigilant when supporting older people for signs of deafblindness and adapt your communication with them. Seek specialist advice whenever possible. Practical strategies for communication and information gathering The supported decision making model underpins the process for decision making outlined in the Mental Capacity Act. The key issues for an advocate are: • Information about the decision • Level of understanding the person has • The concepts involved, the questions needing to be asked • How best to interact with, observe and record the process of communication. The main steps to this process of communication with the person are: gathering information, intelligent questioning, planning to meet the person, discussion, observation checking interpretations and summarising the process. Think dual sensory, use the checklists to identify where an older person may have a hearing or visual loss and plan your communication approach. Use interpreters where appropriate. Record and evaluate your meeting with the person, and interpretations of communication – keep an evidence base. Identify any conclusions. Evaluate your practice. Be confident that practice builds expertise but guard against complacency or pre judgement. Operational and ethical dilemmas in IMCA Independent Mental Capacity Advocacy is very tightly defined and delivered, the issues are complex and serious and advocates will encounter a range of people in their work. Independent mental capacity advocacy is decision led but person focused – at a minimum IMCA protects and at its best it empowers. Advocates need to develop their skills at understanding and enabling communication in order to increase the likelihood of ascertaining the wishes and preferences of the person they are representing. It is vital to identify people for whom communication is affected by a sensory disability, so that specific communication approaches might be used to involve the person in the decision in the best way possible. Conclusion The statutory safeguards that IMCA provides have been long awaited and are vital to securing the best outcomes of serious decisions for those who are unable to express their wishes. Communication is fundamental to the process of IMCA. In order to stay person focused an advocate needs to consider ways and means of communicating directly with the person wherever possible. In many situations an IMCA will be advocating with people with complex, non-verbal communication, many of whom may have a sensory loss. The approaches and information presented here is intended to provide advocates with the necessary understanding to be confident in these situations. IMCAs must be all round confident communicators, confident investigators and confident evaluators. This publication and the training developed by Sense aims to build expertise and confidence in these areas in order to provide effective advocacy. References Bradshaw, J. (2006) Communication and Challenging Behaviour. The Challenging Behaviour Foundation Caldwell, P. (1996) Getting in Touch: Ways of working with people with severe learning disabilities and extensive support needs. Pavillion Publishing. Henderson, R. (2006) Non-Instructed Advocacy in Focus: a discussion document. Action for Advocacy Grove, N. et al (1999) See What I Mean: Interpreting the Meaning of Communication by People with Severe and Profound Intellectual Disabilities. Vol 12, No 3, pp190-203. Journal of Applied Research in Intellectual Disabilities. BILD publications. Grove, N. et al (2000) See What I Mean: guidelines to aid understanding of communication by people with severe and profound learning disabilities. BILD & Mencap The National Technical Assistance Consortium for Children and Young Adults Who Are Deaf-Blind (2002) Communication Factsheets. USA Bradshaw, J. (2006) Communication and Challenging Behaviour. The Challenging Behaviour Foundation Mencap (2001) Considerations of ‘Quality of Life’ in cases of medical decision-making for people with severe learning difficulties Miles, B. (2003) Talking the Language of the Hands to the Hands. Deafblind Link Edge, J. (2001) Who’s in control? Decision making by people with learning difficulties who have support needs. Values into Action Silver, K (2005) Assessing and Developing Communication and Thinking Skills in People with Autism and Communication Difficulties: A Toolkit for Parents and Professionals. Jessica Kingsley Publishers The Foundation for People with Learning Disabilities (2000) Everyday lives, everyday choices: for people with learning disabilities and high support needs. Morris, J. (2002) A Lot to Say: A guide for social workers, personal advisers and others working with disabled children and young people with communication impairments. Scope Redley, M. et al (2006) The Evaluation of The Pilot Independent Mental Capacity Advocacy (IMCA) Service. University of Cambridge Department of Health (2008) The First Annual Report of the Independent Mental Capacity Service Swann, G. (2000) Communication and Advocacy Training Course. Sense Key Documents The Mental Capacity Act (2005) The Mental Capacity Act (2005) Code of Practice The Mental Capacity Act (2005) (Independent Mental Capacity Advocates) (General) Regulations 2006 The next section has 9 examples of checklists you could use in your advocacy work. Where there is a list of options to choose from or that could be ticked these are indicated with space [ ]. Checklist 1: Receiving a referral Name of Person: Name of Referrer: Name of decision maker: What is the decision needing to be made ? What methods of participation has the decision maker has tried? Has a test of capacity been carried out? What are the alternative courses of action? What is timescale? Who are the key people to talk to? What evidence needs to be collected? What records need to be seen? Is there a key person who can communicate with the client? Checklist 2: Questions to ask about change of accommodation25 Where do they live now? Who do they live with? What do they like about living there? What don’t they like? What help do they get? Can they get extra help if needed? Have they ever expressed a desire to move? Does the person want to move: [ ]To a better area? [ ]Better house? [ ]Do they need more space? [ ]Is there a medical reason? [ ]Do they need to be near friends or family? [ ]Do they want to be more independent? [ ]Do they need more support? [ ]Can they not stay where they are? Who does the person want to live with: [ ]Other people? [ ]Friends? [ ]Family? [ ]In a house with others they know? [ ]On their own? [ ]Other? Where do they want to be: [ ]Town or country? [ ]Busy or quiet? [ ]Near friends or family? [ ]Within easy reach of shops or other places? [ ]Near work or day service? [ ]Other? Who could help with ideas: [ ]Social worker or care manager? [ ]Housing adviser? [ ]Family or friends? [ ]Specialist adviser? [ ]Housing or care provider? Checklist 3: Questions to ask around medical interventions What is the condition needing to be treated? What is the decision needing to be made? What are the options for treatment? What are the effects of treatment? How will this treatment affect the clients quality of life – physical, material, social, emotional, and spiritual abilities and interests – what is their lived experience? How does that person experience values and meaning in their own life – this might be radically different from our own e.g. wind on their face, gentle touch, food? Is a second medical opinion needed? Checklist 4: General Planning What information is relevant to the decision and how can it be relayed in the most appropriate way? What is the person’s level of understanding and what approaches can aid their understanding? What concepts are involved in the decision and will the person understand them? What questions do you need to ask and how might you go about this? What is the best way to interact with, observe, and record responses? Checklist 5: Communication Planning What medical factors are likely to affect the meeting (timing of medication)? What are the key factors affecting the person’s communication? Where and when is the best place and time for this meeting to take place? What is the person’s level of understanding: [ ]Some difficulties with complex language? [ ]Understands simple sentences? [ ]Understands single words? [ ]Understands tone of voice? [ ]Understands simple signs? [ ]Understands pictures/objects of reference? [ ]Unable to ascertain? Can they understand who, why or when questions? Can they understand what or where questions? Can they understand language or concepts relating to past, or future? What speed do they need their communication? Are words or vocalisations used? Are gestures signs or symbols used are they clear? Does the person recognise: written words, spoken words, symbols, pictures, signs or objects of reference? Does the person repeat what others say? If single words or gestures are used give examples What is the person’s level of intentional communication in everyday situations: [ ]Looks at something then at you? [ ]Gestures, reaching, pointing? [ ]Changes behaviour to make you understand what is wanted? [ ]Purposeful movement to find or be near someone or something? [ ]Persistent behaviour? Can the person indicate yes or no? How do they do that? Can the person indicate positive or negative feelings? How do they do that? How do you know the person is happy, excited, at ease, unhappy, distressed or in pain? What level of hearing does the person have? What level of vision does the person have? How does the person feel about the meeting (or about meeting new people): unaware, confident, nervous, uninterested, and anxious? What strategies does the person need to interact: pausing, seating, physical support, pictures, objects? What motivates the person to communicate? Is the person able to direct others? What strategies does the person need to interact: pausing, seating, physical support, pictures, objects? What motivates the person to communicate? Is the person able to direct others? Does the person initiate communication? Does the person take turns, copy or share? How do people say hello to the person? With whom do they communicate most? Should closed (yes/no) or open ended questions be asked? What resources will you need to communicate with the person? What key words (signs/symbols) will you need to use to convey the information? Does the person understand these concepts? How does the person attract attention, ask for something which is not there? How do they access their communication system? What is the person’s level of intentional communication in everyday situations: Looks at something then at you? Gestures, reaching, pointing? Changes behaviour to make you understand what is wanted? Purposeful movement to find or be near someone or something? Persistent behaviour? Other? Checklist 6: Planning the meeting What are the aims or purpose of the discussion? What are the key questions you need to ask and how should you ask them? What information has already been presented to the person, by whom and how? What information do you need to present and how? What medical factors are likely to affect the meeting (timing of medication)? What are the key factors affecting the person’s communication? Where and when is the best place and time for this meeting to take place? How will you record your interactions or observations during the meeting? Checklist 7: Evaluating your meeting Write a brief summary of any key points of the meeting What information do you think the person understood? What is your evidence? What do you think the person was communicating to you (or their key communicator)? What else did you observe? What was the level of participation in the discussion? So far as you can tell, was the response typical of person's usual pattern of communication , better or poorer than usual (you may need to refer back to key carer) Was any support provided to help the person communicate? Physical prompting, verbal prompting, etc? Were there any indications the person was communicating intentionally? Checklist 8: Interpreting behaviour What interpretation has been made about the person's wishes or feelings? What supporting evidence is there for these interpretations? Has this interpretation been brought out in other situations? Do other people agree with this interpretation? What evidence is there to support a different interpretation? Do you need to gather any further information or evidence? Checklist 9: Reaching Conclusions What information is there about the decision to be made, the options available and the consequences of those options What is the relevant written information from files and records What evidence has been gathered from discussions and meetings with family, care workers and other staff What do the client's wishes seem to be and why do we think this (evidence)? What do other people think and what is their evidence? Is there an emerging decision or path? Are there opposing or complementary courses of action? What has been identified and how does it relate to the decision? Communication Approaches Type of Communication: Speech Some good things about it: Can communicate complicated things Things to consider: Different languages Type of Communication: Writing Some good things about it: Can communicate ideas Things to consider: Not everyone can read. English may not be first language Type of Communication: British Sign Language (BSL) What is it? The natural and preferred language of Deaf people – a language in its own right Some good things about it: It is important to the identity of the Deaf community and its cultural life Things to consider: Not all Deaf people use sign language Type of Communication: Braille What is it? A system of raised dots which can be read by touch using patterns to represent letters and numbers Some good things about it: Almost anything can be brailled and it enables blind people to have access to information Things to consider: Layout is important to bear in mind when brailling. You will need equipment to braille; there are agencies who provide this service Type of Communication: Tadoma What is it? This involves the person resting their hand on the speaker’s throat and using vibration and movement to help follow speech Some good things about it: It helps to provide help when lip reading Things to consider: It can be embarrassing for the person using Tadoma to ask to use it when meeting strangers Type of Communication: Pictures Some good things about it: Most people can understand them Things to consider: Can be difficult to draw. Some things are impossible to draw – abstract ideas Type of Communication: Deafblind Manual (Fingerspelling) What is it? One sign for each letter spelt out on person’s hand Some good things about it: Can communicate complicated things Things to consider: Needs English as a first language Type of Communication: Sounds Some good things about it: Get attention Things to consider: May not be understood. Shouting is considered bad manners in some Asian cultures Type of Communication: Symbols What is it? For example, using a sponge to let the person know it is bath time Some good things about it: Enables the person to understand the world around them Things to consider: Limited to what symbols can be used. Symbols need to be relevant to the person Type of Communication: Touch Boards What is it? Alphabet board where the person points to letters to spell words Some good things about it: Can communicate in a common language Things to consider: Very slow Type of Communication: Pointing What is it? Pointing to things wanted Some good things about it: Gets attention Things to consider: Not always understood Type of Communication: Eye Contact Some good things about it: Develops trust Things to consider: Some cultures find direct eye contact rude Type of Communication: Eye Movement What is it? Used like pointing to show things wanted. Sometimes used to operate computers Some good things about it: Enables people with limited movement to communicate Things to consider: Can be misunderstood Type of Communication: Smell What is it? Using smells like symbols to communicate things in the environment Some good things about it: Smells can help with recognition and identification eg. perfume Things to consider: Can be confusing Type of Communication: Paget Gorman What is it? An educational sign system Some good things about it: Visual, so helpful for Deaf people Things to consider: Not part of Deaf culture Type of Communication: Sign Supported English What is it? Using sign language but with English grammar, to support spoken English Some good things about it: Helps Deaf people who are lip reading Things to consider: A lot of Deaf people use SSE. Not many Deaf people use full BSL Type of Communication: Photographs/ Picture Books What is it? Books of pictures of things used/ needed regularly Some good things about it: Helps the person get things they want Things to consider: Limited use Type of Communication: Raised Alphabet What is it? Alphabet raised from paper so can be felt Some good things about it: Can be used for labelling things Things to consider: Difficult to provide a lot of information Type of Communication: Facial Expressions Some good things about it: Common to all of us Things to consider: Can be misunderstood Type of Communication: Body Movement Some good things about it: Common to all of us Things to consider: Can be misunderstood Type of Communication: Gestures Some good things about it: Common to all of us Things to consider: Difficult to understand Type of Communication: Block What is it? Spelling out complete words by drawing shape of capital letter on palm of deafblind person’s hand Some good things about it: Simple to use Things to consider: Needs English as a language first Type of Communication: Hands on Signing What is it? The person places their hands over the person who is using sign language Some good things about it: Can be used by deafblind people who do not have enough vision to see sign language Things to consider: A learning process is involved in making the switch from a visual to a tactile language Type of Communication: Visual Frame Signing What is it? Keeping the signing small and in the right place for the person to see Some good things about it: Can be used by people who have limited vision. Things to consider: Check with the person what their vision is Type of Communication: Makaton What is it? A structured language programme using speech, signs and symbols Some good things about it: Is a language with structure Things to consider: Has a limited vocabulary Type of Communication: Textphones/ Minicom What is it? Phone which uses text Some good things about it: Can be used by Deaf people to communicate Type of Communication: Typetalk What is it? System by which Deaf person can speak to hearing person via phone operator Some good things about it: Do not need a minicom to communicate with Deaf person Things to consider: Speaking through a third person can be difficult if talking about something personal Type of Communication: Moon What is it? A simpler alternative to braille. A tactile system based on letter shapes Some good things about it: Easy to learn Things to consider: Not widely used Type of Communication: Large Print Some good things about it: Can be easily created by most word processors Things to consider: Use at least 14 point print and easily readable font (e.g Arial) Type of Communication: Lip reading Some good things about it: Can also pick up facial expression Things to consider: Make sure direct light is on face of person speaking, but avoid bright sunlight Type of Communication: Computers What is it? Via E-mail, or disc Some good things about it: Blind people can get facilities to read braille from computer Things to consider: Expensive Type of Communication: Silence Some good things about it: Can communicate dissatisfaction amongst other things Things to consider: Could be misunderstood as not listening Type of Communication: Total Communication What is it? Using several different forms of communication to enable the person to be understood and understand Things to consider: Creates many opportunities to communicate Resources and contacts Sense 101 Pentonville Rd, London N1 9LG Tel: 0845 127 0060 Textphone: 0845 127 0062 Fax: 0845 127 0061 E-mail: info@sense.org.uk www.sense.org.uk Deafblind UK National Centre for Deafblindness, John and Lucille van Geest Place, Cygnet Road, Hampton, Peterborough PE7 8FD Tel:01733 358100 Textphone: 01733 358100 Fax: 01733 358356 www.deafblind.org.uk Action for Advocacy PO Box 31856, Lorrimore Square, London SE17 3XR Tel: 020 7820 7868 Fax: 020 7820 9947 Email: info@actionforadvocacy.org.uk www.actionforadvocacy.org.uk BILD Campion House, Green Street, Kidderminster, Worcestershire DY10 1JL Tel: 01562 723 010 Fax: 01562 723 029 E-mail: enquiries@bild.org.uk www.bild.org.uk Scope 6 Market Road, London N7 9PW Tel: 020 7619 7100 or 0808 800 33 33 E-mail: response@scope.org.uk www.scope.org.uk Mencap 123 Golden Lane, London EC1Y 0RT Tel: 020 7454 0454 Fax: 020 7608 3254 Email: help@mencap.org.uk www.mencap.org.uk Interpreters for Deaf and Deafblind People RAD Sign Language Bureau 18 Westside Centre, London Road, Stanway, Colchester, Essex C03 8PH Tel: 0845 688 2626 Textphone: 0845 688 2628 Fax: 0845 688 2627 SMS: 07974 325 563 (24 hour emergency service) E-mail: interpreting@royaldeaf.org.uk www.royaldeaf.org.uk Association of Sign Language Interpreters ASLI, Fortuna House, South Fifth Street, Milton Keynes MK9 2EU Tel: 0871 474 0522 Textphone: 18001 0871 474 0522 Fax: 01908 32 52 59 E-mail: office@asli.org.uk www.asli.org.uk Signature (Signature, previously called CACDP, is a UK recognised awarding body for deaf and deafblind communications) Signature, Mersey House, Mandale Business Park, Belmont, Durham DH1 1TH Tel: 0191 383 1155 Textphone: 0191 383 7915 Fax: 0191 383 7914 E-mail: durham@signature.org.uk Office of the Public Guardian The Office of the Public Guardian will be moving offices as of Spring 2009. Please contact them on the details below for their new address. Phone: 0845 330 2900 – Phone lines are open from 9am – 5pm Email: customerservices@publicguardian.gsi.gov.uk www.publicguardian.gov.uk Footnotes 1 Putting people first: a shared vision and commitment to the transformation of adult social care, Department of Health, 2007 2 The information contained in this chapter has been taken from Mental Capacity Act 2005, Code of Practice 3 Information for this chapter is taken from the Mental Capacity Act (2005) Code of Practice. 4 Some of this information has been adapted and summarised from: Henderson, R. (2006) Non-Instructed Advocacy in Focus: a discussion document. Action for Advocacy 5 The Watching Brief Approach, developed by Asist Advocacy, Stoke on Trent. www.asist.co.uk 6 Lewington, W., Clipson, C. (2002) Advocating for Equality, Scope 7 Much of the information here has been adapted from Communication Factsheets. (2002) The National Technical Assistance Consortium for Children and Young Adults Who Are Deaf-Blind, USA 8 Bradshaw, J., (2006) Communication and Challenging Behaviour. The Challenging Behaviour Foundation 9 Miles, B. (2003) Talking the Language of the Hands to the Hands. Deafblind Link 10 Information taken from www.intensiveinteraction.co.uk 11 Caldwell, P. (1996) Getting in Touch: Ways of working with people with severe learning disabilities and extensive support needs. Pavillion Publishing. 12 Swann, G. (2000) Communication and Advocacy Training Course. Sense 13 Grove, N. et al (1999) See What I Mean: Interpreting the Meaning of Communication by People with Severe and Profound Intellectual Disabilities. Vol 12, No 3, pp190-203. Journal of Applied Research in Intellectual Disabilities. BILD publications. 14 Grove, et al (1999) ibid 15 Grove, N. et al (2000) See What I Mean: guidelines to aid understanding of communication by people with severe and profound learning disabilities. BILD & Mencap 16 Information taken from: Sense (2006) Fill in the Gaps: A toolkit for professionals working with older deafblind people. Sense 17 Edge, J. (2001) Who’s in control? Decision making by people with learning difficulties who have support needs. Values into Action 18 Adapted from Silver, K (2005) Assessing and Developing Communication and Thinking Skills in People with Autism and Communication Difficulties: A Toolkit for Parents and Professionals. Jessica Kingsley Publishers and Grove, N. et al.(2000) ibid 19 Aitken, S., and Millar, S. (2004) Listening to Children with communication support needs. Sense Scotland 20 Grove, N. et al (2000) ibid 21 Grove, N. et al (2000) ibid 22 Redley, M. et al (2006) The Evaluation of The Pilot Independent Mental Capacity Advocacy (IMCA) Service. University of Cambridge. 23 Mencap (2001) Considerations of ‘Quality of Life’ in cases of medical decision-making for people with severe learning difficulties 24 Swann, G. (2000) Communication and Advocacy Training Course. Sense 25 The Foundation for People with Learning Disabilities (2000) ibid