Communication with people with intellectual disability in the counselling context
Challenges with communication are common for many people with intellectual disability and, while counselling practitioners need a solid theoretical basis to their work, they also need to ensure that their practice is flexible enough to respond effectively to the needs of this broad client group (O'Driscoll, 2009).
The communication styles of people with intellectual disability vary, as they do with all people. Some may be very articulate, some very talkative, and others may have very limited or no verbal communication (Gallagher, 2002). Depending on the individual client's communication style, needs and limitations, counsellors may need to talk more or talk less, make more statements than usual, give more suggestions, prompt more, rephrase the other person's words and ideas, or 'loan them the words' more than usual (Booth & Booth, in Gallagher, 2002). A key practice in this context can be helping the client develop their own language around their experiences.
IQ is not a useful indicator of a person's communication capacity. Two people with the same measured IQ can be very different in their practical abilities, as well as their verbal fluency. Nor is a person's vocabulary a good indicator of their level of comprehension or communication ability (Booth & Booth, in Gallagher, 2002). In the same way, a person's chronological age may not be an adequate measure of their maturity (Dossetor, Santhanam, Rhodes, Holland & Nunn, 2005).
There is a real absence in the literature about appropriate approaches for counselling, treatment and support of people with intellectual disabilities with very limited verbal ability or more 'severe' forms of impairment. This is due to either little or no distinction made between people with 'milder' forms of impairment and more 'severe' forms of impairment, and people with more 'severe' communication difficulties being excluded from the research. More work needs to be done to better understand and respond to the needs of this group. However, it is important to acknowledge that counselling and other therapeutic interventions rely on some level of communication (verbal or otherwise) and thus may not always be a useful intervention (see below for alternative ways to support the individual with limited communication.
Recognising the intellectual disability
The term 'intellectual disability' does not describe any particular disability. Instead, it describes a collection of different types of cognitive impairment and syndromes, brought about by numerous possible causal factors. Aside from IQ testing, which is not a reliable indicator of a person's overall capacity, there are a number of non-clinical indicators which help to identify whether a person has an intellectual disability. Some common areas of daily functioning that people with intellectual disability experience difficulty with include:
- Reading and writing.
- Identifying money values or calculating change.
- Giving directions to a place they would be expected to know (they may be able to take someone there, but not give directions).
- Being able to remember appointment times and successfully attend on time.
Indications of intellectual disability may include a range of difficulties in a person's communication, such as:
- Having a restricted vocabulary.
- Having a short attention span.
- Being easily distracted.
- Experiencing difficulty in understanding questions.
- Difficulty in managing time.
- Responding to questions either inappropriately or with inconsistent answers.
- Experiencing memory difficulties.
- Showing difficulty with abstract thinking and reasoning.
Behavioural indicators may include being over-friendly, being eager to please, or acting in a way that is appropriate for a much younger person. Further information about the person and their life experiences, such as receiving the Disability pension; attending special school or a special education class at school; or being employed in 'supported employment' settings or attending work training programs may also indicate intellectual or cognitive disability. If there is doubt about whether a client has an intellectual disability, counsellors can ask questions about the person's current life circumstances and past life experiences – particularly during the initial engagement and assessment process. Relevant questions may include:
- Where did you go to school?
- Did you get any extra help at school?
- How are you with reading and writing?
- What do you do during the day? Do you go to work?
- What types of things do you do for fun? To relax?
- Where do you live? Do you live with other people?
- Do you get a pension from Centrelink?
The overall picture painted by the responses to these questions should help practitioners to assess reasonably well whether or not a client has a mild/bordeline intellectual disability. It is obviously easier to recognise more severe intellectual disability than 'mild' or 'borderline' levels. Yet it is crucial that people with less severe 'categories' of intellectual disability are recognised and provided with appropriate support, particularly as they are likely to hide their individual needs to avoid stigmatisation, and may not qualify for other supports. People with 'mild' or 'borderline' intellectual disability are likely to be just as vulnerable as people with more severe intellectual disability, but in different ways.
Acquiescence and masking
People with intellectual disability often mask their difficulty with verbal communication to avoid the stigmatisation associated with having a disability. It is very common for people to take on a passive communication style, where they let the more powerful person in the conversation take the lead. In this way, acquiescence is itself a method of masking disability. There are many possible reasons why acquiescence takes place, including:
- The person might not understand what is said, so they agree (say yes) in an attempt to cover their misunderstanding (masking).
- They find it difficult to say no, particularly to someone perceived to be in authority.
- They don’t want to say no, or are afraid to say no, and agree with what is said to avoid getting into trouble.
- We assume a lot of our communication each day is straightforward when in fact it involves the use of a lot of abstract knowledge.
Masking can also take the form of:
- Rote learning of jargon or statements to use when responding to questions or to be a part of the conversation.
- Learned behaviours to get care or help, to fit in, or to get someone to go away.
- Rote learning of statements that simply help the person to get by and deal with their everyday experiences, for example: 'I don’t know whether I'm Arthur or Martha'.
- Inconsistencies between people's stories and their body language, potentially indicating differences between what the person is saying and what they would say if they felt safe enough, or were empowered to do so in that moment.
Some strategies for responding to the above may include:
- Asking clients for advice on how best to communicate with them might give counsellors/practitioners valuable information and empower clients to communicate their needs, which is likely to reduce acquiescence.
- Treat the person as a person - Speak naturally, using age and culturally appropriate tone of voice, greeting, listen and show a genuine interest in people's story. Don't talk down to people – speaking to someone as if they are a child is insulting and will damage the relationship.
- Working slowly, pace your communication and use repetition, using simple language and sentences (easy English and no professional jargon).
- Get 'alongside' – Eye contact can be difficult for people, building rapport while sitting next to someone or chatting while doing a task.
- Check for understanding along the way - do not over or underestimate what the client understands (or what the counsellor think they understand), or pretend to understand what the person is saying when you aren't quite sure. It is better to gently check than to continue under false pretences.
- Clarification: "Could you tell me in your own words?"
- No double-barrelled questions (see below) and unpacking complex ideas into smaller parts: e.g. "What’s the first thing you need to do if you want to save money? What do you need to do after that?"
- Naming alternatives and problem solve.
- Naïve questioner: "I don’t know much about x could you tell me about it?"
- Use person's own words or language as much as possible – Their language may have different meanings to yours.
- Use visual as well as verbal approaches – Gestures, images, writing, modelling, drawing, cards etc.
- Be open to learning from the person as you will learn more from them than they will from you.
Attention and memory
Many people with intellectual disability experience short attention span, gaps in memory and difficulties with memory processing. The level of impact on communication in the counselling context depends on each individual and the counsellor's ability to assess the individual's communication ability and adapt their practice accordingly. For example, a client may talk about a particular topic or an experience they have had that initially seems unrelated to the counselling session; by respecting the person's need to have some time to talk about their topic, rather than the counsellor's plan for the session, this seemingly insignificant topic might turn out to be important. Being mindful of whose needs the practitioner is meeting if they feel tempted to dismiss apparently irrelevant topics brought up by their client, is important. Anxiety before and within the counselling session is common. This may be due to the idea that counselling is 'talk-based', coupled with their fear of failing in communication (Dagnan & Jahoda, 2006). Learning to understand the way that anxiety impacts on an individual’s memory, attention and concentration is extremely important.
Approaches that may assist include:
- More frequent and shorter sessions.
- Be prepared to work slowly and with repetition.
- Adjusting the frequency of your speech may also be necessary to assist the person's level of comprehension and retention of what you say.
- The use of imagery and creating a visual record of counselling sessions is a useful technique for recording and remembering counselling sessions, and also to review and see development over time. Some imagery may not work with some clients, and this needs to be explored sensitively with each client to avoid insult and/or embarrassment. For example, creating drawings to record the session might seem child-like or embarrassing to many adults with intellectual disability. Normalising the use of drawing and artwork in counselling with adults can help to break this association. The counsellor might say, 'I really like to use drawings to help me understand some things, do you mind if we do a drawing of what we’re talking about?'
Similar to the common difficulties experienced with attention and memory, many people with intellectual disability have considerable difficulties in sequencing events and understanding the relationship between particular actions and their consequences. This can be particularly challenging when there are multiple subjects and events in the story. The story may seem out of order or illogical. However, it is important to let the client tell their story in their own way, in their own time, in full, and without interruption. This group may use their own language structures and methods of communicating events or experiences, and this may differ greatly between individuals. For example, some people have great difficulty staying in chronological sequence when they tell their story, while others may feel great discomfort in jumping out of sequence or being interrupted.
It is the responsibility of counsellors to adapt their communication and thinking about the client's story to the individual client, and not expect the client to conform to a standard mode of storytelling. Counsellors working with people with intellectual disability need to listen patiently as the person tells their story, sometimes over a number of sessions, and then take what they have heard and attempt to make sense of it as a whole. Patience and time to allow the person to be heard completely are crucial.
Practitioners should be aware that unnecessarily complex questions can create confusion and embarrassment for people with intellectual disabilities - they may have the ability to answer questions well, if the questions are carefully worded. Developing a high level of self-awareness in questioning is a key strategy in this counselling context. Careful use of questioning can ease confusion and embarrassment; clarify problems, goals and intentions; and provide clients with increased opportunity to be heard as participants in meaningful conversations.
Approaches that may assist when questioning a person with intellectual disability may include:
- Keeping questions of choice simple. When asking a person about their preference, an outcome, or an action, pose no more than two options in one sentence. For example, say 'Would you like to stay home or go out tomorrow?' rather than 'Would you like to stay home or go out tomorrow, or just go out for a little while?'
- Avoid double-barrelled questions - asking two questions about different subjects in one sentence. For example, don’t say 'How do you feel about going out today and going in the taxi?' Instead, ask 'How do you feel about going out today?', and then ask about the taxi separately.
- Avoid the use of negative and double-negative questions. These can be difficult for people to interpret and respond to, because a 'yes' response to a negative question denies the proposition of the question rather than affirming it.
- Example of a negative question: 'Didn't you see your mum last night?' (If the response is yes, it means the person did not see their mum). Instead, ask: 'Did you see your mum last night?'
- Example of a double-negative question: 'Didn’t you not hear what the train guard said?' Instead, ask: 'Did you hear what the train guard said?' or 'What did the train guard say?' or 'Did you hear the train guard say anything?'
- Communicate in short sentences, not paragraphs, and break questions down to manageable sizes with one main idea.
- Use plain, simple 'easy' English
- If you falter in forming a clear question, apologise and try again. Say 'Sorry, that was confusing, let me start again.' Or, reset the question: 'Can we go back to the part where you talked about ...'
- Signpost the conversation: If the conversation gets confused or confusing for either participant and you want to start over, make this explicit. Say that you are starting over.
- Use a combination of open and closed questions. Begin with an open question, then ask closed questions to confirm details or clarify meaning. Example of an open question: 'Would you like to tell me about your family?' An example of a closed question: 'And do you have an uncle?'
Concrete and abstract thinking
Many people with intellectual disability are highly concrete thinkers. This can result in misunderstandings due to their literal interpretation of verbal communication and general difficulty understanding abstract concepts. Practitioners should improve their awareness of what is abstract, and the unconscious ways they employ abstract concepts and language in their communication with clients.
These examples of abstract thinking commonly cause difficulty:
- Mathematical concepts such as time and money.
- Metaphors, euphemisms and analogies.
- Emotions and feelings.
- Some types of humour – e.g. sarcasm.
People with intellectual disability often speak using their 'own language' or attach their own meaning to particular words and phrases. Exploring the meaning of statements and keeping a record or 'dictionary' of phrases commonly used by the person is a useful way of improving rapport and communication. This is also highly beneficial for both the counsellor and client during periods of staff turnover. Using drawing and artwork in counselling is another important tool in helping clients with intellectual disability to gain concrete understanding of abstract concepts. For example, 'relationship' can be explored through drawings of people and visual representations of how they relate to each other. Drawing and artwork can also assist counsellors to understand what a client means when they use of particular sayings or phrases. There are numerous factors that influence meaning and the ways that people use of the English language, and it is vital to take cultural background and experience into account as well as the presence of intellectual disability. Comprehension and understanding needs to be assessed on an individual basis, and practitioners need to ensure that their stereotypes of people with intellectual disability do not impose limited expectations on the person’s ability to communicate.
Understanding emotions can be a big challenge for people with intellectual disability, especially given that the language used to describe emotions is abstract, yet the reality of the emotions they experience can be very concrete. People with intellectual disability often experience intense physical or behavioural responses to unexpressed emotional states, due to their limited means for identifying and expressing feelings. This is often compounded by a high level of experience of trauma through abuse and exploitation. Understanding 'emotions' by connecting the abstract label of the emotion to the corresponding physical experience in the body can help people to talk about their emotional experiences and find ways to recognise and respond when emotions are disturbing. For example, a person may not be able to talk about their 'nervousness', but can talk about 'feeling sick'. It is helpful for counsellors to ask questions like 'Where do you feel that?' or 'How do you feel that in your body?' to help the person identify what they are feeling and when.
Behavioural issues in communication
'Challenging behaviour' is a common term in the field of intellectual disability, and is used to describe any behaviour that negatively affects a person in their daily life, or negatively affects the people around them (CDDHV, 2005). People with intellectual disabilities are often referred to counselling because of a behaviour change that is causing problems for them or others in the home, workplace, school or wider community. Behavioural issues may also have negative impacts on the client and counsellor within the therapeutic context.
The kinds of challenging behaviour that people with intellectual disability might display include (CDDHV, 2005):
- Self-injurious behaviour (self-harm).
- Property destruction.
- Oppositional behaviour.
- Socially inappropriate behaviour (including sexualised behaviour).
It is extremely important that people with intellectual disability who display challenging behaviour are not labelled as 'challenging' themselves. It is the behaviour that is challenging. Challenging behaviour should be viewed as a form of communication. People supporting or counselling a person who exhibits challenging behaviour need to work hard often over long periods of time to understand the messages behind the behaviour. It is also important that a person's behaviour is not simply dismissed as an inevitable feature of their disability. A person’s disability can influence their behaviour, but is not necessarily the cause of the behaviour. This is particularly important given the over-representation of people with intellectual disability in the criminal justice system. Clients with intellectual disability who experience difficulty with their behaviour should be taken seriously and given support to explore the causes of the behaviour, as well as strategies to deal with it.
There are numerous medical, psychiatric, social and environmental reasons why a person with intellectual disability might display challenging behaviour in their life and/or in the counselling context. CDHV (2005) suggests that these can include:
- Physical pain or discomfort (recognised or unrecognised)
- Background medical conditions
- Substance abuse
- Syndrome-specific conditions
- Mental illness
- Abuse and exploitation
- Communication difficulties
- Lack of self-determination and control over life
- Social isolation
- Grief, loss and bereavement
- Life stages and transitions
- Living and working environments
People with intellectual disability sometimes change their behaviour as a way of creating change when their needs and desires are otherwise difficult to communicate and meet. Any change in a person's usual behaviour could, therefore, indicate that they are seeking to change some part of their internal or external environment, including within the counselling session. Difficult behaviour in counselling may be related to a change the person is seeking; for example, just because a client has arrived for their session, do not assume that they want or are ready to be there in a calm and collected manner.
Useful strategies for supporting a person who is displaying challenging behaviour in counselling include:
- Create safety in the therapeutic relationship – focus on trust and take the time needed to build genuine rapport. Demonstrate commitment to helping the client by showing that you will not judge them or refuse service due to their behaviour (show this by not taking their behaviour personally).
- Maintain self-awareness and critical reflection to ensure that a client's negative reactions are not taken personally (for example, a client's anger may be directed at you as the counsellor, but you shouldn't take it personally, and may need to seek supervision).
- Remember that the client is trying to create a change and they can't see another way of achieving it.
- Foster an environment of learning and understanding - rather than punishment for what is essentially a problem of communication.
- Change the counselling environment – consider home visits, going outside the office, sitting on the grass, going to a park, or meeting at a coffee shop.
- Use symbols or artwork – these may help the client to find other ways of expressing their needs, wants and desires.
- Try a less formal approach if the client withdraws – use humour, play cards, go for a walk or a drive, wash up, or create a new and less threatening conversation. Talk through doing.
Many people with intellectual disability also experience difficulty empathising with others, which can lead to very difficult situations when negative behaviour is directed towards or harmful to others. This is particularly difficult for many workers to accept, particularly if they are the target of the behaviour. It is important not to punish a client for their behaviour, but to openly explore the concepts of 'others', 'feelings' and 'apology' through concrete examples that are meaningful for the client. For example, ask questions like:
- 'How would you feel if that happened to your mother/friend?' (refer to someone specific whom the client respects).
- 'What would your mum/friend think about you doing this?' (refer to a key, non-judgemental person in the client’s life).
Confabulation or 'story telling'
Confabulation or 'story telling' is a common technique used by people with intellectual disability to gain respect and approval from others. The stories they tell are often a reflection of way the client wants to be seen, and are a means of increasing other people’s opinions of them. It is often the lack of really valuable stories that a person can tell about their lives and experiences that leads them to confabulate. Remember that people who confabulate are not lying, but are trying to project a belief about themselves or a version they would like to be true. Some suggestions for navigating 'story telling' include:
- Don't deny, diminish or contest the client’s story – there is little point in refuting what is an absolute truth for the client at that point in time.
- Don't contest the client’s story: this sends the message that what the client has to say is not valued. The story may not in itself be real or valid, but the client's reason for telling it is.
- Remember the possibility that the stories could be true – do not disregard out of hand anything a client says.
- Practise deep listening – try to hear the meaning behind the story the client is telling. What is the subtext? Are there any inconsistencies? What is the behaviour?
- If it is important to get to the truth for safety reasons, find a way to ask questions that are consistent with the fantasy; this will help the client to reveal what is really happening.
- Confabulation can decreases when there are good, real stories to tell – look for and value the real stories that the client can tell about themselves.
Speaking and verbal issues
Difficulties with speech and communication are common for many people with intellectual disability. Some people might experience difficulties with speech itself, have problems with language (including how to use and understand spoken language), or both. There are many reasons why a person with intellectual disability might experience speech difficulties, and these reasons may or may not be related to their disability. Some of the factors that can contribute to difficulties with speech include (CYWHS, 2011):
- Physical factors and physical disability – such as low muscle tone; structural problems in the mouth, nose and throat; and conditions that affect nerve and muscle control (it is important that physical difficulty with speech does not lead to assumptions about a person's level of comprehension or language ability).
- Ear infections that can cause hearing difficulties and hearing impairment/
- Intellectual disability, which slows the development of speech and language.
- Acquired brain injury, which may temporarily or permanently damage the parts of the brain that deal with speech and communication.
- Lack of stimulation or experience in communicating verbally.
Traumatic experiences can change the chemical structure in the brain, by affecting the ability to recognise, accurately describe or sequence even concrete concepts (Shauer, Neuner & Elbert, 2005). Some of the particular difficulties that people can experience with speech include (CYWHS, 2011):
- Difficulty with making sounds – including saying words clearly or correctly.
- Speaking fluently – without hesitating too much or stuttering.
- Using words and grammar – knowing and applying the rules of word order and word use.
- Choosing the right words and putting them in the right order to convey the intended meaning.
It is vitally important not to make assumptions about why a person experiences difficulties with speech; for example, people who have verbal communication difficulties due to their physical disability are often assumed to have an intellectual disability, due to the association between intellectual disability and problems with communication. This may not be the case. Also people with intellectual disability might present as having much higher levels of communication ability than they actually do. Many people with intellectual disability have numerous strategies for masking their disability, and can appear to understand and participate in conversation when their genuine level of comprehension is limited. Mimicking and copying others' language use is common, and can be convincing. Strategies which may be useful during counselling or general casework for people with speech difficulties include:
- Build rapport and safety in the counselling relationship. By building trust in the relationship, you will help them express themselves and their story, regardless of their speech or language problems.
- Show the person that they are valued, by giving them the time and hearing their story.
- Never pretend to understand a person's speech. Simply say 'I'm sorry, could you please say that again?'
- If the client has little or no verbal speech, find other languages. Talk to caregivers and others who know the client about how they communicate. Do they use particular signs? Symbols? Facial gestures? Body movements or signals? Music? Dancing? Drawing? Photographs and/or other picture languages? Perhaps caregivers or family could support you to learn the best approaches
- Take time to work slowly and with respect – show interest in getting to know the client and their story, and find ways to communicate this
- Regularly check for meaning. Do not make assumptions about what the client is saying or meaning.
Issues around confidentiality for people with intellectual disability can be complex in counselling practice. It is important to work with your client to find an appropriate balance between the client’s right to privacy of their personal information, and the need to share information with others to promote understanding, safety or to work together to achieve the client’s goals (including family members, carers, or other service providers). It can be difficult for counsellors/practitioners to assess the need to disclose client information to third parties. Each situation needs to be assessed on a case-by-case basis and discussed with the client bearing in mind the need to concretise the concept of confidentiality during discussion.
Acquiescence is a common issue in navigating confidentiality with clients who have an intellectual disability. For example, sometimes clients agree to the sharing of their personal information with third party people or organisations that they would prefer to keep the information from, but they comply with requests due to fear of the third party or fear of getting into trouble. This is most prominent in instances of 'powerful carers', who have a high level of influence over the person with disability (Upton, 2009).
It is useful to approach confidentiality issues as areas for negotiation. This means discussing confidentiality on a regular basis, talking about and exploring what it means, and discussing what kinds of circumstances would break it. This also means being aware of the people and relationships in the client's life, both professional and personal – this awareness may help with the negotiation process and ethical decision making. Discussing confidentiality directly with family members, carers and supporters will help to develop a shared understanding of confidentiality, reiterate the client's right to confidentiality, and reduce the level of acquiescence on part of the client. Asking a client to read a confidentiality policy or giving them a flyer about confidentiality is not sufficient. Confidentiality needs attention on a regular basis, and is an evolving discussion with the client depending on the issues that come to light.
Relationships: Improved engagement in discussions around different types and lived experience of relationships
People with intellectual disabilities require more in-depth engagement and education in the more abstract concepts of relationships and intimacy, than other adults in community. For example, exploring:
- What are public and private spaces?
- What is the difference between friends and romantic relationships?
- What makes a family?
- How do you know what you are feeling?
- How do you know what others are feeling?
It is important for counsellors/practitioners to work with an understanding of the people in a client's life, realising that relationships have the potential to protect and support as well as to harm and place a client at risk. Some helpful questions to ask might include:
- Who is in the client's life?
- What potential does the client have to develop supportive relationships?
- What about family of origin? (the family of origin is a source of support for some people, but not for others)
- Are the relationships the client has safe ones? What opportunities and/or risks do they present?
Important considerations for practitioners
Counsellors' values and attitudes
Counsellors' own views, values and attitudes influence their practice with people with intellectual disability. Individual professionals and agencies have a responsibility to rigorously examine their personal and collective beliefs about intellectual disability, and consider barriers to the inclusion of people with intellectual disabilities as service users and as members of the wider community. The quote below is an honest example of the challenges that many practitioners experience when first engaging with people with intellectual disabilities (Community Living Program, 1995, in O'Connor & Fowkes, 2000, p. 14):
“Looking back on fifteen years of community work I realised that I had come in contact with a number of people with an intellectual disability. I wasn’t conscious at the time that they had an intellectual disability. I thought of them as a bit slow, a bit different. I realise now that as soon as I thought of them as being different I started to detach emotionally, energy wise. They became less human, less real, less visible to me. I didn’t really listen to what they were saying, I didn’t really work to assist their understanding, my communication became a sort of pretend communication. Now it seems to me that this detachment is a common response of people in the community, professionals etc. to people with an intellectual disability.”
Positions of power in the counselling context
Counselling professionals are in a position of power when they work with people with intellectual disability. Being aware of this power imbalance is crucial. In many cases, compliance, miscommunication and challenging behaviour can be avoided or reduced by a conscious and ongoing effort by the practitioner to decrease the power differential between themselves and their clients.
- Language: Avoid using jargon – unnecessary use of professional jargon will only remind the client that they are unequal in the therapeutic relationship.
- Language: Be aware of the different labels of intellectual disability, and use them as little as possible. Most people with intellectual disability do not identify with diagnostic labels or even with having a disability, due to the powerful stigmatisation associated with disability. Often, we use labels for different 'client groups' to meet organisational needs, with little consideration of their effects on the individuals concerned. Keep these labels for discussions with colleagues and staff, rather than for discussions with clients.
- Communication: Take responsibility for communication and make sure that clients know that it is OK to tell you if they don’t know or understand something.
- Blame: Never blame a client for not understanding you. It is the counsellor's responsibility to ensure understanding, and a reflection of their skill as a therapist.
- Understand that through trust and rapport, which may take time, you will hopefully get to a place where it is OK for the client to let you know when they don’t understand something. Until that point, the practitioner must take full responsibility for communicating well and for checking understanding.
Time is a key factor in effective counselling practice with people with intellectual disability. The standard time allowed for practice – to engage, build rapport, create safety, assess and define individual and therapeutic goals – may not be sufficient for many people with intellectual disability. Many agencies struggle to deal with high demands for service and limited staff capacity, however, flexibility in service delivery is highly beneficial (if not essential) for this client group (Brown & Hooper, 2009).
Longer sessions are not necessarily required or advised for clients with intellectual disability, because prolonged concentration can be tiring for many clients. Instead, shorter sessions on a more frequent basis might be helpful. It is also important that counsellors do not expect clients with intellectual disability to develop or move forward at the same rate as other clients. Many people with intellectual disability need more time in counselling sessions to:
- Understand the nature of the task.
- Comprehend the questions being put to them.
- Think about the questions.
- Try to retrieve from memory the relevant information.
- Put this information into words.
- Say these words (or communicate in a way that suits them if they cannot speak) (Milne & Bull, 2006).
- Enlist the support of others to put changes discussed in sessions into practice in the person's real life.
Good practice suggests that counsellors should at least double the time they normally would for the duration of therapy (Brown & Hooper, 2009). In other words, if a counsellor would typically plan to see a person for 6 sessions, they should allow 12 sessions if the client has an intellectual disability. In addition, while adjusting and tailoring materials and activities to suit the client is always part of good clinical practice, it may be more important for clients with intellectual disability.
Working well with family, paid workers and other significant support people
People with intellectual disability are likely to have support from family members, paid workers or other significant people in their lives. Family members and other support people often know the person very well and are best placed to observe changes in their behaviour and well-being. Their opinions and observations should be taken seriously.
Family members, and other support people can often offer useful information and clarification in situations where the client has difficulty providing detailed information. There is evidence to suggest that clients with intellectual disability will best respond to therapy when they have the support of family or paid staff to apply what they have learned with the therapist in real-life settings (Hayes, 2007). This requires the therapist to collaborate with the client’s support people. It may involve allowing support people to accompany the client to sessions, supporting carers to develop the skills and understanding required to create and support change for the client, and helping carers and paid workers to develop helpful attitudes that will allow change to occur (Hayes, 2007).
Carers and supporters can help the therapeutic process by:
- Helping the client to practise the skills learned in sessions and apply the lessons from sessions to the 'real world'
- Observing what has and hasn’t worked well for the client in the 'real world'.
- Creating opportunities for success for the client.
- Helping the client to recognise and celebrate positive change.
- Learning new ways of understanding and interacting with the client to support positive relationships.
- Teaching others (e.g. teachers, friends, workmates) ways they can support the client to maintain positive change.
Privacy and consent
Involving family members, paid workers or other significant support people in the client's therapy will require careful consideration about issues of privacy and consent. It is important to find an appropriate balance between the clients' right to privacy of their personal information, and the need to share information with others (including family members, support people or other service providers). The benefits of sharing information can include promoting understanding, increasing safety and working together to achieve the client’s goals. Exploring concepts of privacy and consent requires exploring the explicit consequences of what these terms mean and what would happen if they were breached. For example, if they agreed on someone attending their counselling session, what is ok for them to know, what is not ok for them to know, what would it mean if they found out x, y or z?
It is useful to approach confidentiality issues as areas for negotiation (O'Driscoll, 2009). This means discussing confidentiality on a regular basis, exploring what it means, and discussing what kinds of circumstances would break it. It also means having an awareness of the people and relationships in the client's life, both professional and personal, that can help the negotiation process and ethical decision making. Discussing confidentiality directly with family and supporters can help to reach a shared understanding. Ultimately, this will remain the choice of the client, as per anyone else.
Keeping the focus on the client
When the counsellor and the client invite others to be part of a team to support change, it is important for everyone to understand that the client is the focus of the counselling sessions. When powerful family members and significant others are invited to be part of the process, it can be difficult to maintain this focus – particularly when others have their own experiences of the problem. If dominant voices share the experience of the problem, take time to explore whether the problems experienced by the support people are, in fact, experienced by the client.
Building the capacity of the support team
The capacity of families and carers to support therapy and create and support change may vary. It is important to consider the context of the client's support. Who are the significant support people in the client's life? What skills and experiences do they bring to the situation? Do they need help to develop any additional skills or understanding to be able to support the client in therapy? Would working with the supporters and skilling them up to respond to the trauma be a more effective intervention, particularly if the individual has limited communication, or other reasons that may make counselling a less useful intervention.
Be realistic about what can be achieved, and refrain from putting any unnecessary pressure on anyone involved. If the counselling involves working with a parent – who is currently caring for their child, running a household, working and dealing with other issues in their life – that parent's capacity to offer support in counselling may be significantly diminished. Asking them to take on further responsibility may be unrealistic and only set them up for failure.
The capacity of paid support workers can also vary significantly, depending on their level of training, type of supervision, the way they see their role, and the way their role is defined by the organisation they work for. It is important to be aware that paid support work can be a high-stress profession, particularly in organisations that may not have adequate training and supervision of staff (Hatton et al., 1999, in Wilner, & Goodey 2006).
It can be useful to recognise that there may be a distinction between the supportive people in you client's life who have a lasting commitment to the person, who are there 'for the long haul' and those who may be in other roles (such as paid staff) where their support is more likely to be restricted to certain circumstances and less enduring. Understanding this can help you better understand the capacity and limitations of those involved in the persons care.
To develop an understanding of the client's support context, counsellors may need to spend time with the significant support people in client's lives (with the client's permission) to develop an understanding of how the support people see the problem and to understand their capacity to offer support around the therapeutic process.
Duty of care and safety
There are some extra considerations around duty of care to take into account when working with someone with intellectual disability. If the client discloses something that raises a counsellor's concern, the counsellor needs to consider a range of safety, security and ethical issues (MacDonald, 2008; Olver, personal communication, 9 November 2011). Safety and security issues to explore and consider:
- Encourage the client to consider their safety and security. Are they at risk of further victimisation? Do they need a different physical location?
- Discuss relationships regularly. Vulnerability and a lack of understanding around relationships can lead to people putting themselves at risk. Help the client to understand concepts about relationships in concrete terms
- Check back with the client over time to monitor the situation. Don't presume the client can make judgements about safety. Talk through the situation to explore their understanding of their own risk. Talk about consequences or likely outcomes of different decisions.
Ethical issues to explore and consider:
- Inform the client of any obligations that counsellors have to report the information the client has disclosed (taking care not to compromise the safety of yourself or others). Where your obligations are not clear, seek guidance through reflecting with colleagues on the circumstances of the matter and your professional and ethical obligations.
- Name any confidentiality issues.
- If the matter is of a legal nature (for example, the client has disclosed that they have perpetrated or been the victim of a crime), explain that you, as their counsellor, may be called as a witness if the matter proceeds to court.
- If the client has reported that they committed an offence or they are alleged to have committed an offence, reflect on any personal and/or professional values which may limit your capacity to provide effective support. If you are unable to provide support, you need to arrange alternative support options.
- Support the client to clearly describe what occurred. Ask open questions (see the section on 'Narrative interviewing techniques' in this resource). Diarise the exact words that the client uses to describe the incident, preferably at the one sitting. Diarise details such as the time between the event’s occurrence and the time when the client first disclosed the event. Your task here is not to interview the client or interpret their information, but to clearly document the client's account of events at the time of first disclosure (it is possible that the client's capacity to retain or recall this information may reduce as time passes).
- Take extra care around the language used in case notes. While it is always important to take care in case notes, it can be particularly important for clients with intellectual disabilities, as this client group is more likely to have court procedures or need reports for government agencies. Listing the person’s difficulties in case notes can work against them.
- Discuss and clarify the options of reporting or not reporting the incident to the police and the likely course of events associated with each option.
- Support the client to consult a lawyer or specialist agency.
- Support the client to make a complaint to the police if they wish. If the client is not ready to go to the police, remember that, in time, they may change their mind.
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