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SECTION 5: BEHAVIOUR SESSION 14: INTRODUCTION TO BEHAVIOUR THAT CHALLENGES If you are new to working with people with severe and profound learning disabilities, one area that you may need to learn about quickly is how to respond when someone’s behaviour is causing difficulties. This section will help you to understand why these difficulties may occur, and will give you some strategies to manage situations effectively and safely.

What is challenging behaviour? In the past we would have talked about disturbed behaviour or behavioural difficulties. However, it was thought that this gave a rather simplistic idea that an individual had difficulties a bit like having a personality problem and that in some ways it was their fault. We now understand that behavioural difficulties are the product of a variety of factors, individual, social and environmental which operate in combination. You will no doubt have observed that some people with learning disabilities cope much better in some situations, and with some people. For example, someone with autism may respond well to a very quiet, structured environment where members of staff are very calm, and very clear in their communication. The same person in a busy, noisy environment with unpredictable changes might become extremely distressed. The term ‘challenging behaviour’ was designed to help us to see the behaviour as a challenge to services to provide effective interventions and support. If we see challenging behaviour as a result of a number of interacting factors we have a starting point for systematically modifying some of those factors and we are less likely to blame the person.

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Challenging behaviour is a social construct. It is interpreted to mean different things by different people. Different people may have different priorities for the types of behaviour they consider challenging. This means that when families, carers and professionals meet, everyone may have different ideas about what constitutes a challenging behaviour. Coming to a consensus about what behaviours to tackle as the priority and how to intervene is part of the process of positive behavioural support. The interventions that are developed will need to be ethical, very clear and consistently followed by everyone. It would be useful for you at this point to make a list of some of the challenging behaviours you have observed or been told about that are shown by the adults with learning disabilities in your service. You might like to compare this with my own list which is based on people I have known

• self injury – scratching and pulling at own skin • outbursts of anger where objects are thrown • prolonged screaming • swearing • repetitive behaviour like collecting and folding paper • hitting staff and other clients • pacing up and down quickly • banging doors • flicking light switches • letting sinks overflow • snatching other people’s drinks • disrupted sleep routine • eating inappropriate things

It is interesting to note that we all have challenging behaviour sometimes, including some of the things on the above list! Research shows that people with learning disabilities who have one sort of challenging behaviour frequently have other different sorts as well. For example, I am currently working with a gentleman who obsessively collects objects, injures himself when upset, tries to injure other people, and also becomes anxious if room layouts are changed. The fact the challenging behaviours tend to occur in combination means that you will often be following quite complex assessment and intervention plans. Research has consistently shown that challenging behaviour is a major stressor on families and professional carers. Feelings of exhaustion, anger and anxiety are frequently reported though it has also been stated that finding solutions has helped people feel creative and fulfilled. It is important that you are supported in your work. You will need someone to talk to if you have had a difficult day and you should be clear who you can go to if you have concerns or need advice. You also need to be sensitive to stress in your colleagues as they may also need support.

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You may find that families tell you that they are feeling very stressed by their relative’s behaviour and you need to be clear of your service’s policy on the sort of advice that can be given. It is good practice to learn about sources of help for families in your area, both statutory and voluntary so you are aware what is on offer. There is clear evidence that caring for a person with challenging behaviour without adequate support can have an adverse effect on both the mental and physical health of family members so requests for help need to be taken very seriously. Conversation with a colleague. My questions are: If you are not sure what to ask, here are some examples of questions to help you formulate your ideas. Ask your colleague about the sort of support staff can expect to receive to help them if they are feeling stressed by challenging behaviour. Ask your colleague what you should do if a family tells you they are struggling to cope at home? Ask what they can tell you about psychology and psychiatry services, occupational therapy, or social care services like respite or community care. Ask if there are any family support groups in your area. Ask about how the referral system works for families wanting to access these services. Remember that the voluntary sector often provides excellent services.

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Task Pick one of the following websites and see what support and information is available for families or professional carers of people with learning disabilities and challenging behaviour. www.bild.org (website for the British Institute for Learning Disabilities) www.thecbf.org.uk (website for the Challenging Behaviour Foundation) www.carersuk.org/Information/Helpwithcaring/Carersassessmentguide (This explains about the Carers Assessment which documents the help that carers have a right to receive in their own right. The person with a learning disability should have an Adult Care Assessment which assesses the services they need in their own right). Think about the sort of information families are given about additional services to help them with challenging behaviours. Do you have a file or notice board that gives families this information? If your service has a website does it have links to useful services?

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SESSION 15: UNDERSTANDING CHALLENGING BEHAVIOUR In this section we will examine in more depth some of the factors (social, biological, psychological and environmental that may underline challenging behaviour). As you read through, consider how the impact these factors can be identified and evaluated when we start an assessment of someone’s behaviour. Some factors may be open to manipulation and change, (e.g. a noisy environment at lunch time) other factors may need awareness and empathy (for example, the anniversary of bereavement). Social factors People with learning disabilities are likely to have a history of finding things hard, being excluded from activities and many will have experienced bullying. A big feature of living with a severe or profound learning disability is lack of control over fundamental things like where you live, who you spent time with, what activities you prefer and the sorts of environments you spend your time in. Having a lack of control over your life is a major factor in feelings of stress, anger, frustration, fear and depression. People with challenging behaviour often experience more discontinuity and lack of control because they may be excluded from services or have to access services far from home. As we saw in the earlier section, challenging behaviour in turn is a major stressor for families and carers, so people with challenging behaviour are frequently supported by people who are also under stress. Many people with severe and profound learning disabilities will have communicative problems that mean it is very hard for them to express their emotions verbally or to seek clarification when they have not understood things. Some people may experience a series of life changes, like family bereavements, staff changes without really having understood what has happened. This may make them fearful or confused.

Some services support a variety of people with challenging behaviour. Just because a person has challenging behaviour themselves, it does not mean they do not find other people’s challenging behaviour upsetting and stressful. This means staff members need to think very carefully, about the way they organise social groupings in their services. Sadly some services for people with learning disabilities report high staff turnover so that people with learning disabilities may suffer disruption and change in close, caring relationships. When new staff arrive it takes time for them to learn new routines, so there may be times when programmes are not followed consistently.

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Biological Factors Some, but not all people with severe and profound learning disabilities will have medical diagnosis that explains their disability for example Down Syndrome or Autism. Other people may have a learning disability in conjunction with a mental or physical health problem (like depression, or eczema) that contributes to behavioural difficulties. Biological factors do not operate in a vacuum, so their interactions with the social factors in the previous section must be born in mind. Some syndromes associated with learning disabilities and challenging behaviour. Syndrome Link to CB Web-site Fragile X Syndrome Associated with mild to moderate learning

difficulties. It is associated with anxiety and communication difficulties. There is a risk of self injury especially hand-biting. Stereo-typed movements may also be seen like hand-flapping.

www.fragilex.org.uk

Alpha Mannosidosis Associated with Psychosis and sleep difficulties

www.mannosidosis.org

Angelman Syndrome Poor speech development, over activity and a short attention span

www.cafamily.org

Autism Associated with a range of behavioural difficulties, anxiety and sensory sensitivities

www.nas.org.uk

De Lang Syndrome Associated with a range of physical differences, eating problems and discomfort after eating and self injury

www.cdlsusa.org

Lesch-Nyan Syndrome

Severe self-injury, usually to the fingers and lips

www.indifo.org.uk

Prada-Willi Syndrome

This is rare in people with severe, profound and complex learning difficulties, but where it occurs it is associated with overeating because of perpetual hunger. Other issues are skin picking or scratching, anxiety, a need for routine and an increased risk of psychotic episodes

www.cafamily.org

Rett Syndrome This occurs only in females and is associated with profound learning difficulties, the girls appear to develop normally but start to loose skills at around eighteen months. Children will need support for crying, sleep difficulties and stereotyped hand movements.

www.rettsyndrome.org

Williams Syndrome This can be associated with being over friendly, and problems with over activity and concentration. Children and adults can be anxious and have sensitive hearing.

www.williams-syndrome.org

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Mental Health Difficulties In the past the mental health of people with learning disabilities was a neglected area. Because they did not have the words to describe emotional suffering, or symptoms like voices or hallucinations, it was assumed that unusual behaviour was just part of the learning disability.

Today we realise that people with learning disabilities are more prone to mental health problems than the general population and need treatment where appropriate. Sometimes the symptoms may be atypical, so for example some with depression may overeat, or refuse to go out but without other emotional signs. It is important that we do consider mental illness as a factor in challenging behaviour because it will affect the way that we support the person. If for example a person is over-active, and runs away from carers when they are in the manic (over-active) phase of bipolar disorder behavioural interventions alone are unlikely to be successful until the person’s mood is more stable. At the moment people with learning disabilities receive mental health care from specialist psychiatrists trained in learning disability. If carers are concerned about the mental health of a person who is not under the care of a psychiatrist then the first step is to make sure that the person’s GP is aware of the difficulties. If carers are supporting a person with learning disabilities at the GP they should make sure they know the person well and can explain symptoms fully. Some people with learning disabilities can be helped to describe their symptoms with the help of pictures or photos. Medication Many of the service users that you support will be on medications. Some of these medications may have side effects that have an impact on behaviour, for example by causing drowsiness, or difficulty in concentrating. Medication may be used to treat mental or physical problems like anxiety or depression or to modify behaviour. The last use of medication can be quite controversial and it is good practice for this to occur only as part of carefully planned behavioural management.

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Physical Health Problems Some types of physical health problems may be associated with challenging behaviour, for example a person with a headache or toothache may bang that part of their head, be distressed or uncooperative. A person who is in great discomfort due to eczema may start to self injure. Some types of epileptic seizure are associated with challenging behaviour. For this reason an assessment of physical health is an important part of understanding challenging behaviour. People with learning disabilities are living longer than in the past and therefore have to cope with the physical changes of ageing. Young people may need support to cope with puberty. Vision and hearing showed to be checked regularly and any suspicion of change reported promptly to the relevant person if people are prescribed glasses and hearing aids, it is most important that they are supported to use them. Special care needs to be taken with adults who have Down syndrome as they are at risk of early onset Alzheimer’s disease. Any behaviour changes like wandering or getting lost should be reported to their GP. Psychological/Developmental factors underlying challenging behaviour By definition people with a severe or profound learning disability will be at an earlier developmental stage than adults of the same chronological age. In the past we used a concept of mental age and it was estimated that adults with severe learning difficulties had a mental age of about three to six years, and people with profound learning disabilities somewhere between birth and three years. The concept of mental age is unhelpful in that people learn by experience and may have different levels of skills in different areas, however, it does alert us to the fact that people with learning disabilities may process information in a different way developmentally and have skills deficits that need support. Some types of challenging behaviour may be a reflection of the developmental level at which the person is functioning. One young woman with profound learning disabilities was at a developmental level where immediate cause and effect was very interesting and motivating. She had a phase of pulling people’s hair and was accused of being spiteful. From a developmental perspective, she was interested in actions that led to interesting noise and the screams of her victims were probably an interesting and predictable effect of her actions. Her behaviour was managed by a mixture of vigilance and prevention and by providing her with many acceptable activities, whereby she could experiment with cause and effect. She developed some useful computer skills using a Touchscreen as a result of the intervention. Some behaviour may reflect skills deficits especially in the area of communication. If a person does not have an acceptable way of asking for what they want, or rejecting an activity, they may develop unacceptable

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methods. In this case, teaching them an appropriate communication skill may be effective. One young woman who refused activities by pinching staff and hurling equipment was taught to push equipment away gently and to sign finished or goodbye to staff, she learnt this very quickly. Environmental factors Research shows that the physical environment can have a large impact on the occurrence of challenging behaviour, and that environmental modifications are a useful way of reading challenging behaviour. Noisy, hot and busy environments can act as triggers to challenging behaviour. Everyone’s tolerances are different and there are people who find very calm environments boring and under stimulating so this area needs individual assessment. Staff working with individuals with autistic spectrum disorders, need to be aware that autism is associated with sensory sensitivities to stimuli like noise, smell, taste, and temperature. This means they may be distressed by stimuli that their carers do not even notice unless they are very vigilant. Environmental factors interact with all the factors in the previous sections. So for example, a young woman with eczema and autism finds hot sticky nights very uncomfortable. One particularly hot night she spends the night scratching and has very little sleep. She does not tell her mother how she feels but refuses breakfast and arrives at her day service feeling hungry, very tired and unhappy. When she changes into her costume at the swimming baths, staff notice bleeding patches of skin and tell her she cannot swim. The young woman does not like changes of routine, does not understand why she cannot swim, especially when everyone else is in the water. She becomes very angry, shouts and scratches her skin even more. On the way home on the bus she sits next to someone she does not like because he has a loud voice, the bus is hot and sticky and she starts to self injure again.

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The purpose of behavioural analysis is to analyse these sorts of factors to make sure that if possible this combination of events does not happen again. Task How would you manage the risk factors of heat, eczema, hunger, disturbed routine, self injury, and personality conflict for this young woman in the future? Conversations with your colleague My questions are: You probably have a multitude of questions, but in case you would appreciate guidance you could pick from this list. Choose a person whose behaviour interests and/or worries you. Ask your colleague what factors contribute to that person’s challenging behaviour. Ask about a particular medical condition that you feel may be contributing to a person’s challenging behaviour. Ask your colleague how the medical condition (a syndrome, or physical or mental health problem) interacts with other factors like the social and physical environment. What are staff advised to do to try and offset any risk factors that may lead to challenging behaviour? Choose one of the websites to learn a little more about one condition associated with severe, profound and complex learning disabilities and challenging behaviour. A list of these was provided earlier on the table about different conditions.

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SESSION 16: ASSESSMENT AND INTERVENTION WITH CHALLENGING BEHAVIOUR Understanding the process of assessment and intervention will be important to you in several ways:- At some point in your work, you are likely to be asked to

• attend meetings to plan assessment and interventions • to collect information about behaviour • to try out strategies to see if they work • to follow final programmes very consistently • to keep records about how programmes work in practice

If all this sounds like hard work, you are correct – it is! However, when a programme works well it is a wonderful and rewarding part of your job. A man I know was virtually housebound because of a range of very severe challenging behaviours. Very gradually, staff taught him to keep his clothes on and to communicate his needs more calmly. He learnt how to walk into the garden, then how to sit in the car, and then how to go for longer trips. His progress enriched his life and brought him great pleasure. His family and carers shared in his sense of achievement. So how does the process of assessment and intervention work? Sometimes the order in which things happen varies a little but there tend to be several essential stages in behavioural assessment and intervention. Stage 1 Concern is raised about a challenging behaviour and the impact it is having on the person’s life and on the lives of other people who interact with that person.

Stage 2 A meeting is called that includes the key people in the service and very possibly appropriate family members. Sometimes people from other professions e.g. psychology, speech and language therapy, occupational therapy will be invited if they have skills relevant to the problem. This meeting

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is to agree the problem is severe enough to need action and to agree on the action to be taken in order to carry out a full assessment. Where possible, the person with challenging behaviour is asked about what is going well in their lives, their perception of the challenging behaviour and whether they want help. Some services invite the person to the meeting, but I feel big meetings can be stressful for people with communication difficulties if they are not supported in the meeting. I think it can be better for someone who knows the person well to talk to them on a 1:1 basis about the difficulty. Sometimes an advocate will attend to make sure any action is appropriate to the person’s needs. In order to proceed with an assessment there must be informed consent from the person with the challenging behaviour or if they are unable to give informed consent it must be agreed that an assessment is in someone’s best interests. Stage 3 A list of all the success and positive things in the persons life is drawn up. This is done to help everyone keep a balanced perspective so the person is not just seen in terms of their challenging behaviour and so that success in their lives can be recognised. Often staff can give information about very successful work they have done to help the person. Wherever possible, the person with a learning disability should be involved in this process and should have an accessible version of all their achievements and the things they enjoy doing.

Example of a positive profile Background Jane is 24 years old. She has Down Syndrome. She has recently moved to a flat with another woman. She goes to college to study cookery on Mondays. She goes to work at the recycling scheme on Wednesday. She also attends the Disco-Is-Us dancing group for people with learning disabilities. She is able to walk to the local shop by herself because there are no roads to cross. She has never learned to cross roads by herself but it is possible she could be taught. Jane is usually very happy and friendly. She gets on well with the other tenant, the support staff and the neighbours.

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She uses some speech, a little unclear if you do not know her well, some signs and her picture bank to communicate. She is doing well at college when she turns ups. She is doing well at recycling when she turns up. She loves music, buying clothes and fashion magazines. She once pulled a member of staff out of the house by the arm and showed them the neighbours injured cat. The cat went to the vet and the neighbour gave Jane a photo of the cat and £20. She has excellent staff teams at her home, college and supported work who all want to help. Her mum and two older sisters see her regularly and also want to help. Jane used her picture bank to show things she likes which include the staff the neighbours, the cat, college, work and dancing and the visits from her family. Stage 4 A problem behaviours list is drawn up. This should be a comprehensive list of all difficulties. Jane is very fearful of thunder and rain. She has always been a bit fearful since childhood but since leaving home 6 months ago she is much worse. When she lived at home her family would draw the curtains, put the TV on high and let her hide under the duvet. Occasionally they kept her off school if there was a storm. If the sky goes dark and it is raining she screams, runs to the bedroom and she has pushed staff when they have gone in to see if she is OK or have tried to encourage her out. There have been three incidents where she has self injured during storms by scratching pencils down her arm. This fear causes her to miss college, dancing and work if she does not have a lift. The dreadful weather recently has added to the problems. Jane is fearful of dogs. If she sees one, she runs home and won’t leave the house. Twice she dragged staff into the road when she has seen a dog. This fear causes her to miss college, work and dancing if she does not have a lift. She is also refusing to walk to the corner shop.

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Jane needs a blood test because she has appeared tired and the staff have noticed she is asking for a lot of drinks. Jane is scared of needles and is refusing. Staff report Jane is getting increasingly moody and staying in her room for longer periods. Jane’s mum and sisters say they think her fears are getting worse. Using her picture board and talking mats Jane identified thunder, lightning and dogs as “bad”. She did not mention pushing staff or hurting herself. Stage 5 Members of the group need to decide which behaviour or behaviours to tackle first. What would be your choice with Jane? How could you ask Jane? Stage 6 Information is collected about the behaviour or behaviours. This will include:

• Past history of behaviour, including past interventions. For example it might be found that in the past Jane had blood tests okay, if they were done at her house and she wore a patch to reduce the feel of the needle and the TV was kept on as a distraction.

• Any interaction of the behaviour with medical factors. • Information on how different staff members are handling the behaviour. • Information on the duration and frequency of the behaviour.

For example, a diary of how long Jane was spending in her room, or how she responded to different weather conditions.

• It is important to record positive things too, so diary might show it is not all dogs that scare Jane, just very bouncy ones. It might show that she sometimes goes out in a storm and seems to cope.

• You may be asked to fill in an antecedents, behaviour, and consequences (ABC) diary to check what might have triggered the behaviour or what happens immediately afterwards.

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Stage 7 Making a hypothesis. A hypothesis is a guess about what factors may be interacting to cause the behaviour. Here is a hypothesis about Jane and her fear of dogs

Planning an intervention Planning an intervention usually involves three different aspects. 1) Preventing the problem occurring as much as possible It is always worth planning in advance to try and see if you can avoid the challenging behaviour in the first place. Dealing with the results of challenging behaviour can be stressful and time consuming so forward planning is

Trigger- seeing a

dog

Setting conditions

Background factors

Jane’s mother is scared of dogs and thinks Jane got the fear from her

Jane is much more confident if she is with very calm staff. Staff who walk on the outside and tell her to walk slowly while putting their hands on her shoulder, say she can then sometimes tolerate passing a dog. She is better with dogs, if it’s not raining.

BEHAVIOUR – runs away

CONSEQUENCE –in the short term Jane feels better, but it reinforces the fear. Also she is missing out on activities and she could cause an accident.

Jane has had a lot of changes so may be generally anxious

Jane needs her blood check, because if she is feeling unwell she will be less able to cope with stresses. This is a priority

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essential. There are likely to be a series of important elements in your planning process. Deal with any health issues Dealing with medical factors is a priority both for ethical reasons and to rule out any ill health both physical and mental affecting the person’s behaviour. Jane needs to be supported to have the blood test If she remains reluctant there will need to be a “best interests meeting” and it will need to be decided whether or not she has the capacity to consent or not. If it is decided to go ahead she must be involved in a plan to make the process as easy as possible. She may need to be screened for anxiety and depression. Once health issues are addressed Jane needs to consent to doing some work around her fears. We will assume she agrees to do some work on being safe with dogs. Changing the environment If certain environments seem to add to a problem this needs to be addressed. For example, you might want to avoid very hot or busy environments with some people. People make up part of the environment so you might want to think very carefully about the social groupings that occur for certain activities. In the case of Jane’s difficulties you might initially want to take Jane a different route to college so she does not walk through the park where dogs are loose. Changing the way people interact with the person with challenging behaviour In any service it is inevitable that people will respond differently to the challenging behaviour. An intervention should be based on the most effective way of interacting and everyone should be encouraged to respond consistently. It is generally good practice to use a calm low arousal style of interaction. This involves speaking without anger, moving slowly, not invading the person’s personal space and giving the person time to understand what is required. In the case of Jane’s difficulties you might want to work on the way staff members respond when Jane sees a dog. Staff getting anxious will make things worse. They should not show anxiety or ask Jane is she is scared or suggest she goes home. They should walk on the outside of Jane and be prepared to swop sides so they are closest to the dog. Staff members saying “walk slowly” and putting their hand on her shoulder works well, so everyone needs to do it. Sometimes Jane likes to link arms and that is fine too. Mum and Jane’s sisters also need to check their behaviour so they do not fuss when they see a dog. Ideally they should use the same strategy as the staff members so Jane can be confidant about the advice she will be given. Skills teaching Skills teaching involves teaching the person new skills that they can use instead of the behaviour. Sometimes the challenging behaviour occurs because the person is lacking an essential skill so teaching the missing skill is a priority. For example staff members might teach someone to communicate that they need reassurance or help. Jane needs to learn how to be calm when

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she see’s a dog. She needs to communicate her feelings in a safe way rather than screaming, running or pulling people into the road. Gradually she needs to be more confident in dealing with different dogs so she can walk to the corner shop by herself and start walking safely with staff to college and work. What stages could she go through? Perhaps stage 1 could be walking past a very elderly dog who is sitting down on a lead some distance away from her. She might want new picture cards to carry that say “scared, please hold me” or “I’m O.K.” She could show this to the staff member who then if necessary puts their hand on her shoulder or encourages her to link arms and walk slowly past the dog. She could practice taking the staff member’s arm and walking slowly past dogs in a number of situations. She might like a record of her successes in the form of photos or a video. Jane is generally anxious and needs to learn some relaxation techniques both to use at home and when out. When Jane is more confident about dogs she could benefit from some work on road safety, Jane is going to need to work hard so you might wish to arrange a series of small celebrations as she learns new skills. Safety techniques Where a behaviour potentially or actually causes danger, you may be asked to be part of a risk assessment meeting. Risk assessment involves carefully identifying risks and systematically acting to reduce them. The result of a risk assessment will be a clearly documented action plan that has safety strategies. These are sometimes called reactive management. Anytime safety strategies are used they must be documented. Different routes will need to be assessed for safety. Initially Staff may work with Jane in a contained space like the garden. Staff may be taught how to safely block Jane’s attempts to run into the road, so they can use this technique in an emergency. The methods used here are based on behavioural techniques. Used correctly these can be very powerful in helping to change behaviour and teach new skills. In the past sometimes these techniques were misused because practitioners concentrated on punishing undesired behaviours rather than using positive techniques that are based on dignity and respect. Hopefully this section will have given you a range of positive techniques that you can apply in your work setting.

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Questions to ask your colleague My questions are: If you are not sure what to ask, you could pick from this list.

• Ask to see a behaviour programme. Ask your colleague to explain how the behaviour was assessed and how the programme was devised.

• Ask about training in safety techniques. This is sometimes called reactive management or physical intervention.

• Ask if your organisation has a policy on managing challenging behaviour. Spend a little time reading it and note down any aspects that you wish to learn more about.

• See if any behaviour assessments are being carried out and ask to look at any diaries, record sheets, etc.

Collecting Evidence in the Environment Select a person whose behaviour is/ could be challenging to you and check how well you are responding to his or her needs, how well you are preventing the situation that can lead to behaviour that challenges and how well you are teaching the person long-term strategies for coping better.

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Adult’s name The behaviour that can be challenging Strengths and likes/ favourite activities Prevention strategies Management strategies Long-term skills development Discuss your findings with your mentor.