Introduction and guidance

ALT_1 Understanding mental capacity Understanding mental capacity About this free course This free course is an adapted extract from the Open University course. This version of the content may include video, images and interactive content that may not be optimised for your device. You can experience this free course as it was originally designed on OpenLearn, the home of free learning from The Open University There you’ll also be able to track your progress via your activity record, which you can use to demonstrate your learning.

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In these instances, unless stated otherwise, the content may be used for personal and non-commercial use. We have also identified as Proprietary other material included in the content which is not subject to Creative Commons Licence. These are OU logos, trading names and may extend to certain photographic and video images and sound recordings and any other material as may be brought to your attention. Unauthorised use of any of the content may constitute a breach of the terms and conditions and/or intellectual property laws. We reserve the right to alter, amend or bring to an end any terms and conditions provided here without notice. All rights falling outside the terms of the Creative Commons licence are retained or controlled by The Open University. Head of Intellectual Property, The Open University Introduction and guidance Introduction and guidance This free badged course, Understanding mental capacity, lasts eight weeks with approximately three hours’ study time each week. You can work through the course at your own pace, so if you have more time one week there is no problem with pushing on to complete a further study session. You’ll start the course by looking at what mental capacity – and the lack of it – means. You will be introduced to various groups of people who are more likely to lack mental capacity, but you will also learn why it is relevant to everyone. You will look at what can be done to help someone to make a decision themselves and the principles and steps that enable people to judge, fairly, whether someone has capacity or not. You will be introduced to the legislation in the UK and will see how it supports and protects people who may lack capacity. In the latter half of the course, you look more closely at mental capacity in relation to three groups: children and young people, people with disabilities and older people. You finish by reviewing what you have learnt and identifying if and how you would like to take the subject further. As part of the course, you will undertake a number of quizzes, of which Weeks 4 and 8 will provide you with an opportunity to earn a badge to demonstrate your skills. You can read more on how to study the course, and about badges, in the next sections. After completing this course, you should be able to: explain what is meant by mental capacity apply your knowledge about mental capacity to different scenarios and outline how to support and/or assess capacity for decision making in each case outline what is involved in a mental capacity assessment identify what you would like to do next in relation to mental capacity in your personal life and/or career. Moving around the course In the ‘Summary’ at the end of each week, you will find a link to the next week. If at any time you want to return to the start of the course, click on ‘Course content’. From here you can navigate to any part of the course. Alternatively, use the week links at the top of every page of the course. It’s also good practice, if you access a link from within a course page (including links to quizzes), to open it in a new window or tab. That way you can easily return to where you’ve come from without having to use the back button in your browser. You can do this by holding down the ‘CTRL’ key (or CMD on a Mac) and left clicking the mouse button; or right click and ‘open in new tab’. What is a badged course? While studying Understanding mental capacity you have the option to work towards gaining a digital badge. Badged courses are a key part of The Open University’s mission to promote the educational well-being of the community. The courses also provide another way of helping you to progress from informal to formal learning. To complete a course you need to be able to find about 24 hours of study time, over a period of about eight weeks. However, it is possible to study them at any time, and at a pace to suit you. Badged courses are all available on The Open University’s OpenLearn website and do not cost anything to study. They differ from Open University courses because you do not receive support from a tutor. But you do get useful feedback from the interactive quizzes. What is a badge? Digital badges are a new way of demonstrating online that you have gained a skill. Schools, colleges and universities are working with employers and other organisations to develop open badges that help learners gain recognition for their skills, and support employers to identify the right candidate for a job. Badges demonstrate your work and achievement on the course. You can share your achievement with friends, family and employers, and on social media. Badges are a great motivator, helping you to reach the end of the course. Gaining a badge often boosts confidence in the skills and abilities that underpin successful study. So, completing this course should encourage you to think about taking other courses.

Getting a badge is straightforward! Here’s what you have to do: read each week of the course score 50% or more in the two badge quizzes in Week 4 and Week 8. For all the quizzes, you can have three attempts at most of the questions (for true or false type questions you usually get only one attempt). If you get the answer right first time you will get more marks than for a correct answer the second or third time. Therefore, please be aware that for the two badge quizzes it is possible to get all the questions right but not score 50% and be eligible for the badge on that attempt. If one of your answers is incorrect you will often receive helpful feedback and suggestions about how to work out the correct answer. For the badge quizzes, if you’re not successful in getting 50% the first time, after 24 hours you can attempt the whole quiz, and come back as many times as you like. We hope that as many people as possible will gain an Open University badge – so you should see getting a badge as an opportunity to reflect on what you have learned rather than as a test. If you need more guidance on getting a badge and what you can do with it, take a look at the OpenLearn FAQs. When you gain your badge you will receive an email to notify you and you will be able to view and manage all your badges in My OpenLearn within 24 hours of completing the criteria to gain a badge. Get started with Week 1. Week 1: What is mental capacity? Introduction Welcome to Week 1 of the free badged course Understanding mental capacity. You may be interested in this course because you want to support a family member or a friend, or because you volunteer in a care setting, or because aspects of your work require you to understand it. You may not think about mental capacity in terms of its relevance to you personally. You may even feel rather daunted by the term ‘mental capacity’ as it can sound complicated and legalistic. Mental capacity is simply the ability of a person to make decisions for themselves. Such a decision might be one that is taken daily, like what to have for breakfast, or one that concerns something more significant, like where to live. Where this ability is absent a person is said to lack capacity and may need help to make decisions. One of the main themes running through this course is the idea that all adults need to understand what mental capacity means and its importance in their own lives. Watch the animation below which illustrates this point.

There are differences between nations in the United Kingdom (UK) in how the law on capacity has come about and it would not be easy to produce a short course that covers all these variations or the reasons behind them. However, there are many points of comparison and it is useful to consider why the differences exist and what they tell us. You begin this course by finding out what is meant by mental capacity. You will explore the definitions that exist and examine why understanding capacity is important and for whom. You will also consider why this is a contemporary important issue. By the end of this week you should be able to: define mental capacity explain why understanding mental capacity is important and for whom describe mental capacity in terms of how it can change and fluctuate over time. Before you start, The Open University would really appreciate a few minutes of your time to tell us about yourself and your expectations of the course. Your input will help to further improve the online learning experience. If you’d like to help, and if you haven’t done so already, please fill in this optional survey. 1 What is mental capacity? Mental capacity is not just a concept that is important for people using social and healthcare services. They are in need of health- or social care for reasons which may also mean they need support with decision making. Mental capacity is relevant to everyone else too. All of us are likely to need care when we are older. Many of us will be diagnosed with dementia and will find our ability to make decisions for ourselves declines. Even before old age, accidents and unforeseen illnesses can occur that can reduce our mental capacity. Life is unpredictable. Making sure we understand the implications of not having mental capacity while we have it can make a big difference to our lives and to those around us if we lose it. Activity 1 What does mental capacity mean? Allow about 15 minutes Search online to find different definitions of mental capacity. Try to find a medical definition and a legal one, and copy and paste the definitions into the text box below. Then consider the similarities and differences between the two definitions. Identify words that are similar and different in the table below:

Similar words	Different words

Now try to compose your own definition of mental capacity. This may be difficult at this stage but you can return to it at the end of the course and see if your thinking has changed. Following are three example definitions of mental capacity, a dictionary definition, a medical definition and a legal definition. You may have found something like this. Your capacity for something is your capacity to do it, or the amount of it you are able to do (Collins dictionary) – physical, financial, emotional, sensory - the technical facility, etc. The power to hold, retain or contain, the ability to absorb (online medical dictionary) Legal – the ability, capability or fitness to do something – a legal right, power, or competency to perform some act – an ability to comprehend both the nature and consequences of an act (online legal dictionary) When you looked at the definitions and filled in the table you may have noted that these vary in the language that is used. For instance the dictionary definition refers to the extent to which a person is able to do something and also it includes physical as well as mental ability. The medical definition on the other hand refers more specifically to a person’s capacity to understand information and to retain this information. The legal definition meanwhile refers primarily to a person’s rights, competence and understanding. A useful definition of mental capacity which encapsulates its key features is: Mental capacity is the ability to make a particular decision or to take a particular action by any person for themselves at the time the decision or action needs to be taken.

1.1 Three points about mental capacity The following three points about mental capacity are particularly important and form the basis of this course: Mental capacity is a matter that relates to everyone, not just people with a disability or mental impairment. Mental capacity depends on the ability of the person and can change with time. Mental capacity, or the extent to which a person may lack it, involves an assessment and judgement of their ability to make a particular decision. For the rest of this week you will consider the first two points.

1.2 Mental capacity and organisations: differences and similarities A number of agencies offer advice and support to people who may lack mental capacity and to those who care for them. Activity 2 Organisations and their understanding of mental capacity Allow about 30 minutes Go to the websites of the three organisations listed below and: try to find out what the organisation’s role is type ‘mental capacity’ into the organisation’s search box and find out how they explain it and what advice they give. Is this different between the three organisations? If so, does it relate to the people they support? Use the table below to record what you find. Alzheimer’s Society Carers UK Sense

Organisation and its role	How it defines mental capacity and the information it provides

You may have noticed that organisations choose slightly different forms of words when describing their role. Agencies such as the Alzheimer’s Society apply the ideas and principles of mental capacity to the people they support, i.e. those with Alzheimer’s disease and the people who care for them. The organisation Sense provides support and information, including on mental capacity, for people who are deaf and blind. Carers UK support a range of people who care, including children. You might have noticed that all organisations use similar definitions of mental capacity and they all refer to the legislation that applies to this area. The legislation is both important and useful, as it supports and protects people who lack capacity and outlines who can make decisions on their behalf and how. The underpinning principles of the legislation provide support for determining whether someone has capacity and for the process of making decisions on their behalf if they do not. In England and Wales, the legislation is the Mental Capacity Act 2005. Scotland and Northern Ireland have different legislation. You will look at these and the differences between them in Week 3. So far, you have looked at three different organisations and their role in supporting people who may lack mental capacity. You are now going to explore another two organisations. Activity 3 Who is concerned with mental capacity? Allow about 20 minutes Take a look through the list below to get a sense of the range of organisations and people for whom mental capacity is relevant. Then choose two organisations, perhaps one that you are not familiar with and one that you were surprised to see in this list. Visit to their websites using the links below and search for ‘mental capacity’. See how they define it and what sort of information they offer. Use the table below to record your notes if you would find that useful. These notes will help you when you reflect on the learning you have done this week at the end of the course. Rethink Mental Illness MIND Mental Health Foundation The Mental Welfare Commission for Scotland Mencap The Royal College of Psychiatrists The British Association of Social Workers Skills for Care Police Compassion in Dying Shelter Action on Elder Abuse Foundation for People with Learning Disabilities

Organisation and its role	How it defines mental capacity and the information it provides

To compare two examples, the police deal with law enforcement and their language is quite technical, focusing on what the law does and does not allow police officers to do. On the other hand, campaigning agencies such as the Mental Health Foundation undertake formal research into mental capacity and produce academic publications with a view to influencing government policy. Now that you’ve seen which organisations are concerned with mental capacity, you’ll move on to think about who is affected by mental capacity issues.

2 Who and how many lack mental capacity? Mental capacity problems can affect many different sorts of people. Activity 4 Who might lack mental capacity? Allow about 5 minutes In the text box below, make a list of people you think are most likely to lack mental capacity. Think about people you know, or have seen on television, or have read about in newspaper articles. They might lack mental capacity permanently or temporarily. Your list might include: older people who have dementia adults and children with learning disabilities people who are using health and social care services people with a mental health illness people with eating disorders people who have had a stroke people with temporary loss of capacity through intoxication people with brain injuries. However, understanding mental capacity is important for all of us as any of us, and our friends and family, may lack capacity in the future. So how many people might lack mental capacity for some decisions? You look now at the numbers of people in some of the categories listed above. People with dementia At the time of writing (August 2017), there were an estimated 850,000 people with dementia in the UK (Alzheimer’s Research UK, 2017). This is similar to the number of ceramic poppies that were installed in the Tower of London in 2014 to represent the number of British military fatalities in World War One.

See the NHS Choices page About dementia for more information on dementia. People with learning disabilities It has been estimated that just over a million people in England (2% of the population) have a learning disability. The numbers known to learning disability services are much smaller: an estimated quarter of a million people. (Figures taken from Public Health England, 2015.) People with alcohol and drug problems More than 9 million people in England drink more than the recommended daily amount (Health and Social Care Information Centre, 2017). In 2014 there were 8,697 alcohol related deaths in the UK (Health and Social Care Information Centre, 2017). People in this group are more likely to have impaired mental capacity because of resulting mental health issues, the temporary lack of capacity when drunk and the effect that severe addiction/craving has on decision making. People who have suffered brain injury Brain injury can occur at any age and from a number of causes. People with mental health needs Mental ill-health affects people in the UK and globally. Problems range from anxiety and depression to hearing voices and psychoses. One in 50 people suffer from bi-polar disorder, and one in 100 from psychotic disorder (NHS Digital, 2014). People in these groups may all have reduced mental capacity. Two million people in England and Wales are estimated to lack capacity (SCIE, 2016). But who else is affected as a result?

2.1 Who else is affected? Alongside people who may lack mental capacity are those who are affected indirectly: people who live with and care for them, neighbours, and workers in shops, banks and solicitors’ offices. They all need to be aware of the impact that a lack of mental capacity can have. As well as family and friends who offer informal care and support, some people have a formal role in responding. Who are they? Activity 5 Formal support Allow about 5 minutes Take a look at the images in Figure 2. Who might they represent and why might they need to respond to a lack of mental capacity? Write your response in the box below.

Professional people in many different roles need to understand what is meant by mental capacity. These include: staff in adult community care services hospital workers health visitors occupational therapists criminal justice workers people working with children general practitioners solicitors. Some of these professionals have a role in the assessment of mental capacity to which you will return in Week 4. You now conclude Week 1 by exploring the importance and impact of time.

3 How does time affect mental capacity? Mental capacity is not static. People’s ability to make decisions can fluctuate and is also affected by social constructions especially those relating to age.

Activity 6 The impact of time Allow about 10 minutes Think about these questions and make notes in the boxes provided. 1. Think back to when you were a child. At what age were you considered old enough to make decisions for yourself? Did this age differ depending on the decision being made? Who helped you make decisions and why? 2. Think of families you know with children, either from when you were a child or that you have come to know as an adult. In what circumstances was the decision making different and why? Think about things like choice of food, religious observance, relationships and education. Mental capacity is the ability to make one’s own decisions. The extent to which children are allowed to make decisions for themselves is determined partly by their age and partly by their cultural and social environment. For instance, a parent may wish their child to follow a certain religion and bring them up to follow certain beliefs and practices relating to, for example, food, clothes and relationships. Other decisions may be driven by parental preferences; a parent who is vegetarian may also wish that their child does not eat meat. Parents may also decide which school their child goes to and which friends their child associates with. You will explore the assessment of mental capacity in children in Week 5, but thinking about parental decision making is helpful in setting mental capacity in context more generally. What is it that prompts a parent to make a decision on behalf of their child? Is it the age of the child and the type of decision? For example, if a parent does not want their child to access social media online, they may decide not to purchase a device for their child until they reach a certain age. When and why does it stop being a parental decision only? These are questions that do not always have set guidance and differ according to individual circumstances. Please note the Age of Legal Capacity (Scotland) Act 1991 states: The general ceiling for legal capacity at 16 years in s.1 of the Age of Legal Capacity (Scotland) Act 1991 has exceptions in s.2 e.g. allowing transactions 'commonly entered into' such as purchase of a bus ticket on “'terms which are not unreasonable' and more specific instances such as a child over 12 years being afforded testamentary capacity. Capacity increases with a child’s age (along with a corresponding reduction in parental rights and responsibilities). Under s.3 of the 1991 Act young people up to the age of 21 can have any prejudicial transaction entered into between 16 and 18 years of age set aside (in recognition of their contractual inexperience and possible vulnerability).

3.1 Mental capacity can fluctuate In Week 1 so far, you have learned about the definition of mental capacity and have started to think about who is affected by it, both directly and indirectly. Mental capacity is however not a static matter. People’s ability to make particular decision one day but not the next, and can then see their mental capacity return the day after. Why is this? Activity 7 Reasons for fluctuating capacity Allow 5 minutes There are several reasons why a person’s capacity might fluctuate. Look again at your list of people who you considered might be affected by mental capacity that you completed in Activity 4 and try to think about how this capacity might change and for what reason. Add these thoughts to your list as this will help you in the quizzes. People affected by mental capacity How capacity might change The reasons why a person’s mental capacity might fluctuate can include the stress of the situation which the person is in, the effects of medication and availability and access to clear information about the decision that has to be made.

This week’s quiz Check what you’ve learned this week by doing the end-of-week quiz. Open the quiz in a new window or tab then come back here when you’ve finished. Week 1 quiz Summary The main learning points of this week are that: Mental capacity is defined as the ability to make decisions. Mental capacity relates to a particular decision, at a particular time. The decision can be an everyday matter such as what to wear or a more significant matter such as where to live. When a person is judged to be unable to make a decision for themselves they are said to lack mental capacity. Everyone needs to understand the concept of mental capacity because even if you and your loved ones have mental capacity at the moment, it’s quite possible this will change. People may lack mental capacity due to dementia, mental health problems, learning disabilities, brain injuries, substance misuse, illness or treatment of illness. A person’s mental capacity can fluctuate from day to day. You should now be able to: define mental capacity explain why understanding mental capacity is important and for whom describe mental capacity in terms of time and decision making. Next week, you look at the central theme of mental capacity: decision making. Week 2: Decisions, decisions Introduction How would it feel if you were unable to make decisions for yourself?

We make decisions all the time without realising how important it is to us: relatively minor, everyday ones like what to wear in the morning or sometimes more significant, life-changing ones like where to live, or decisions between these two extremes. Where a person’s mental capacity is in doubt, their ability to make a decision has to be given careful consideration before someone else makes the decision on their behalf. The nature and type of decision that is required usually requires intervention. Whatever the nature of the decision, some kind of support or intervention is required. This can be relatively straightforward and involve just the person and people closest to them or it can involve more formal assessment procedures and safeguards. The principle followed throughout is that, wherever possible, the person should be enabled to make their own decision. By the end of this week you will be able to: describe different types of decision and the ones that no one else can make explain how decisions are made and what helps people make decisions explain what is meant by, and who is, the decision maker when a person lacks mental capacity or has fluctuating mental capacity describe in simple terms how decision makers decide describe in simple terms what is meant by an unwise decision. 1 Types of decisions We all make decisions every day of our lives. Some of these decisions are relatively minor ones, others are bigger. Most of us are able to make these decisions by ourselves, although we may seek further information and advice for more important or complex ones. Decisions are made in different contexts. Some cannot be reversed; some decisions involve choosing between alternative courses of action; some are made in times of uncertainty. Activity 1 What is a decision? Allow about 20 minutes Think about a normal day in your life. In the text box below, list some of the decisions you make during the day. Did you need help in making the decision and if so, what kind of help? Decisions relating to a normal day in your life may have included those about what to eat or which clothes to wear. These decisions are what are known as everyday ones. Other decisions concerning your adult life include where you should live and what medical treatment you should seek. These are clearly different, bigger decisions. You may feel able to make everyday decisions fairly easily; you might just need to know what the weather will be like, for example. For bigger decisions, you probably need to gather information over a longer period and discuss it with a friend or relative, before then relying on your own judgement to make the decision. In other words, you are able to, or have the mental capacity to, make a decision for yourself, albeit with additional information. This course is primarily concerned with people who no longer have this capacity or whose capacity fluctuates.

1.1 Exceptions When a person lacks mental capacity, i.e. is unable to make a decision for themselves, or when their mental capacity fluctuates, other people can share in the decision making or make the decision on their behalf. You will explore how this works in a moment. Before you do this, it is important to note that there are certain decisions that cannot be made by another person on behalf of someone who lacks mental capacity. These can be governed by legislation. They include: getting married or entering into a civil partnership consenting to sex placing a child for adoption voting at an election.

1.2 How do we make decisions? It is easy to take our ability to make a decision for granted, but a number of factors underlie it: information, confidence, experience and the knowledge of likely consequences of different courses of action. In the video below, a man with learning disabilities discusses how he makes decisions about money with a social worker. Their discussion illustrates how someone in these circumstances can be supported to manage their own money. [MUSIC PLAYING] NARRATOR In this film we meet Roger, a man with learning disabilities living in supported housing. Roger has recently moved with the help of Tracey a social worker, and does not have an appointee to look after his benefits. Tracey is concerned that the staff at Roger's home may be crossing a line between supporting Roger to decide how he spends his money and making some financial decisions for him. Tracey is meeting Roger to assess his capacity to make decisions about his money. One outcome could be to apply for an appointee. At the same time, Tracey is trying to find out if Roger would like more help to make his own financial decisions. Roger and Tracy role play this situation. Extracts are shown of what would be a longer process. TRACEY The reason I've come to talk with you today is to have a chat about what you understand about your money, the money that you have coming into you, the money that is spent and to have a discussion about how you do that and how people help you with that. OK? ROGER Yeah. TRACEY And to see if there's any ways that we can improve how that works. ROGER Yeah. TRACEY OK. So I won't be writing very much, but sometimes I might need to do that so that I don't forget things. ROGER Yeah. TRACEY OK. First of all, can you just tell me a little bit about who in the house helps you with things around money? ROGER Miss-- the support workers, they ca-- they-- they help me with my money. TRACEY Can you think of some of the things that they help you with? ROGER They help me sometimes with my budgeting. Yeah. TRACEY What does that mean? How do they help you with that? ROGER Well, sometimes I have to go to the Building Society to-- it's in town-- to-- if I want something, I have to-- if it's not much... TRACEY And the support workers come with you then? ROGER Yeah. They go with me. TRACEY And when you get there, what do you have to do? Do you have to pay for anything when you get to the bank? ROGER I have a bank book. I get help with the counter. TRACEY So you take your bank book. Is that to-- ROGER To get the money out. TRACEY To take money out. OK. So the support worker comes with you to the Building Society and you take your bank book. ROGER Yeah. TRACEY And take some money out. Who decides how much money to take out? ROGER Before we set on a journey, or-- I ask before how much-- how much money to get out. TRACEY So can you tell me the kind of things that you need to use that money for? What do you spend it on? ROGER Some of the money I have to use for food con-- food contribu-- TRACEY Food contribution? ROGER Yeah. I have to pay rent, and I get money for if I go anywhere out important to different places. TRACEY You do quite a lot of different activities, don't you? ROGER I do, yes. TRACEY So do you need a bit of money for each of those activities? ROGER Starts in my house has a lot me to... too-- have some money on me. Yeah. For different things. TRACEY OK. ROGER Yeah. TRACEY I know that you're very interested in going out on your own. ROGER Yes. TRACEY And you do that quite often. ROGER Yeah. TRACEY Yeah? OK. So I want to ask you about how much money you take if you went out on your own. For example, if you went out to go and have some lunch, is that something you do? Isn't it? ROGER Yeah. TRACEY So if you were going out to have some lunch without a support worker, do you know how much money you might take with you? ROGER Sometimes I take 4 pound If I don't have 4 pounds in my tin, they let me have 10 pounds for lunch, TRACEY OK. So what would be one of your favourite lunches? What do you like to have when you go to your cafe? ROGER I like to-- I know it's not very healthy, but I do like fish and chips. TRACEY Do you? OK. ROGER Yeah. TRACEY Do you have a drink when you have your fish and chips? ROGER Yeah. Yeah. With me I like a hot drink. I love tea or if they don't serve tea, I ask could I have a cup of coffee. TRACEY OK. So you like to have a hot drink with you. ROGER Yeah. TRACEY OK. If you had fish and chips and a tea, could you guess how much that might cost? ROGER Some of the cafes are a dear. TRACEY Some are dear and some are not so dear. So would it be-- what would a dear one be I wonder? If you had to pay 5 pounds for your fish and chips and tea, would that be dear or not dear? ROGER No. I don't mind. TRACEY You don't mind that, 5 pounds. ROGER No. TRACEY That seems quite reasonable, doesn't it? ROGER Yeah. TRACEY Fish and chips and a tea. ROGER Yeah. TRACEY Have you got-- you told me earlier about each day you have your money, your support worker helps you to puts it in your money bag. ROGER Yeah. TRACEY You've got that with you? ROGER Yeah. TRACEY Would you mind getting it out and showing me what you've got there? ROGER I'll put this down. TRACEY Excellent. Right. So let's have a look. Can you open it up? ROGER I can open it. TRACEY Right. So what's that note there you've got? ROGER I have 5 pounds now. TRACY You've got a 5. OK. 5. And what else have you got there? Can you count it out for me? Are you able to? ROGER That's 5 pounds. 6. TRACEY 6. ROGER 7. TRACEY 7. ROGER 7.50 TRACEY 7. 50. Excellent. ROGER Yeah. TRACEY OK. So that would be enough then-- ROGER For-- TRACEY So if you spent a 5 for your fish and chips and your tea, what have you got left there? ROGER 2 pounds 50. TRACEY 2.50. So say you you've been out for your lunch and then you're on your way home, and you fancied something from the shop. Do you ever pick up anything from the shop on the way home? ROGER Buy a Mars sometimes. TRACEY A Mars? ROGER A Mars bar. TRACEY Yeah? How much is a Mars bar these days? ROGER Oh, it's 50 or 60. TRACEY Is it? Would you like to have the chance to take more out with you in case you might see something that you fancied like a-- I don't know-- something a bit bigger? ROGER Yeah. TRACEY Do you ever go clothes shopping? ROGER Clothes shopping. Yeah. I go with him Mister. TRACEY You do. OK. That's something you do with them. All right then. Well, maybe that's something that we can talk to the support staff about. ROGER Yeah. TRACEY Because you do seem to be-- I'm sure you're quite careful with your money when you go out. ROGER Yes. TRACEY And you seem to know how much you need to spend and how much you've got in your bag there. OK. Well, that's been really helpful talking about that, Roger. Do you ever get to see the information about what's going in your bank account or the Building Society account? It's called your statement. Do ever see those? ROGER I get shown where that is. TRACEY OK. So you look at that? ROGER I look at that. TRACEY OK. So it sounds like the support workers at your home-- ROGER Yeah? TRACEY They're quite helpful to you? ROGER Yes. TRACEY And they're quite involved in helping you to make decisions about getting your money from the Building Society and helping you to decide what you need to do. ROGER Yeah. TRACEY How much you're going to need each day when you go out. ROGER Yeah. TRACEY Yeah. Is there some ways that the support workers could help you to make even more decisions about how to use your money? ROGER Yeah. Yeah. TRACEY I wonder what might be helpful to you. ROGER Yeah. TRACEY Do you feel that you can-- if-- for example, if you wanted to spend something-- go and buy, I don't know. You like listening to music, don't you? Do you ever go and buy music? ROGER I do. I do. TRACEY So if you wanted to go and buy some music, or even if you wanted to buy something bigger like something to listen to your music on, would you feel able to make a decision on that? ROGER I would have to talk it through first. TRACEY OK. So it sounds like the support workers help you quite a lot. ROGER Yeah. TRACEY Yes. ROGER Yeah. Yeah. TRACEY And is that something that you're happy with? ROGER Yes Yeah. I wouldn't know where the money was going to. TRACEY OK OK. Is there anything that you'd like to learn to do with your money or anything you'd like to learn about managing your money that you don't do now? ROGER [INAUDIBLE] to know sometimes where with the money going to. TRACEY That these are the things that-- the ways in which your money is being spent that you don't usually see. ROGER No. TRACEY OK. Would this be things like how much is going on the rent and bills and things like that? TRACEY Yeah. TRACEY OK. So maybe there's a way that we could talk with the support workers about involving you more in seeing what money's coming out of your account and what it's being spent on. ROGER Yeah. Yeah. Yeah. TRACEY OK. Well, that sounds like a really good idea. ROGER Yeah. TRACEY Because it is your money, isn't it? ROGER Yes. TRACEY Yes. All right, Roger. It's been really, really helpful having this chat with you this morning about your money and how you manage it. ROGER Yeah. TRACEY That's really good. And there's some things that we can talk to your support workers about. ROGER Yeah. TRACEY Is there anything else that you wanted to say to me? ROGER I do like having-- I like having money here to-- TRACEY You like having money on you. ROGER Yeah. Yeah. It would be-- If I didn't-- if I didn't have any money, I'd be a bit lost. TRACEY Yes. Oh, good. Well, that's important. That's important for you to have your own money, be able to go out when you choose, and spend it on the things that you want to spend it on. Yeah. Good. That's really important. ROGER Yeah. TRACEY All right, Roger. Well, if there's nothing more that you want to say or tell me, then I think we've spoken enough about that today. All right. Thank you very much. ROGER Yeah.

Box 1 lists some of the factors that enable someone to make decisions for themselves. Support should be provided in all these areas to ensure that all possible steps are taken to enable the person to make decisions for themselves. Box 1 Factors that enable decision making Impartial advice: no bad influences or inappropriate pressure Information from trusted sources Ability to realistically appraise the options available An understanding of the consequences An understanding of the context Appraisal of prior decision making by self and others Previous experience of good and successful decision making The opportunity to put a decision into action. A person should be given all the help they can, in an encouraging environment, to make decisions for themselves before they are judged as being unable to do so. But what if they make a decision that seems eccentric or even unwise? Should someone else make the decision for them?

2 Unwise decisions Does making an unwise decision mean that you lack capacity? We can all think of examples of decisions of our own which, in retrospect, were unwise. But people may think of someone else’s decision as ‘unwise’ for a number of reasons: because it makes them feel uncomfortable, or puts that person’s welfare at risk, or just because that person is too old, mentally impaired, too young or commercially inexperienced. The video below illustrates the tensions that can arise when someone who is being cared for decides to do something that seems unwise to their carer. A video about ‘unwise decisions’ [MUSIC PLAYING] [BIRDS SINGING] MAN Oh. [SETTING DISH ON TABLE] WENDY What do you want for lunch? I'm doing eggs, all right? Are you in a bad mood with me, Raymond? Look, I'll be out of your hair in 10 minutes. Then you'll be rid of me till Monday. RAYMOND That'll be nice. WENDY Wendy. RAYMOND What? WENDY That'll be nice, Wendy. RAYMOND Oh. WENDY It is my name. I'm sure you weren't meaning to be rude. Well, Raymond, it's been a pleasure as always. Have a nice weekend. Yeah. RAYMOND Eh, the lottery. WENDY Well, seeing as you asked so nicely, how can I possibly refuse? RAYMOND Here. WENDY Haven't you got anything smaller? RAYMOND All of it. WENDY Raymond, you only put two pounds a week on the lotto. RAYMOND I want 50 lucky dips. WENDY 50 pounds is a lot of money. RAYMOND I know how much 50 pounds is. WENDY You can't afford it. RAYMOND It's my money. WENDY Yeah, but you have to buy food. You have to pay the bills. RAYMOND It's my money. WENDY I know it's your money, Raymond. But have a think about this for a minute, yeah? Well, what happens if you lose all of it? RAYMOND What happens if I win, eh? Yeah. I would be able to afford proper servants then, not pushy girls like you, telling me what to do all the time. WENDY I am not a pushy girl. And I'm certainly not your servant. This is madness. RAYMOND I am not mad. I'm old. WENDY I didn't mean that. I just mean that I've got a responsibility to make sure you're OK. RAYMOND To tell me what to do, you mean? WENDY All right. You obviously know your own mind-- if you think you can afford it. RAYMOND I can afford it. WENDY All right. Do what you like. I'm logging this in the book. RAYMOND Oh, yeah. WENDY I'm not taking responsibility for how you waste your money, Raymond. Spend it how you like. RAYMOND I will. WENDY Let me tell you this for free. Chucking your money away like this won't make you happy, whatever. RADIO ANNOUNCER And the first ball tonight is number four, one of the most frequently selected balls on the Saturday lotto draw, number four. RAYMOND Four. Four. Yeah. Got four. [LAUGHS] Yay. RADIO ANNOUNCER 27. RAYMOND 27, 27, yeah. There's one, and there. Woo-hoo! Hey, hey! Yeah, yep, yep. Ha! Ooh, another one. There. RADIO ANNOUNCER 12. RAYMOND 12, 12. Wait, wait, wait, slow down. Slow down, will you? Eh, four, 27, 12. Yeah, there you go. Ha! RADIO ANNOUNCER So tonight's final lotto number is 13. That's 1-3. 13. [PAPER CRINKLING] Good luck, everybody. WENDY Well, that was a waste of money. RAYMOND 13, 13-- ah. Come in, number 13. Your time is up. Ha ha! 13 is my lucky number. Ha! Woo-hoo! 13, yes, 13.

The video also illustrates a key point about unwise decisions: people have the right to make decisions that others may consider unwise and should not automatically be judged as lacking the capacity to make decisions as a result. Activity 2 Ironic and light-hearted unwise decisions Allow about 5 minutes In 2016 a social media hashtag #unwisedecisions was used to mark National Mental Capacity Action day. Take a look at some of the ‘unwise decisions’ in the feed #unwisedecisions. They are light-hearted and range from eating the wrong sort of food, to not taking exercise, to getting a tattoo, to wearing the wrong kind of clothes in a particular social situation. Some unwise decisions have very serious consequences. What if an alcoholic is judged to have capacity but decides to drink himself to death and refuse all treatment? Or an anorexic woman has signed an advanced directive to refuse treatment and wants to die? In these circumstances it becomes difficult to know what best to do, especially when people have conflicting attitudes and values. It can be very difficult and painful for friends and family. You will now explore examples of these cases. Activity 3 Unwise decisions that have serious consequences Allow about 10 minutes Read the three newspaper articles below that have appeared in The Guardian and which relate to the right to die, contraception and addiction. Consider the range of decisions that can arise when someone’s capacity is in doubt and the difficulties with decisions that, for those not making the decision, seem unwise and harmful. Right to die: ‘As hard as it gets’: the case of anorexic E and the right to die Contraception: Mental disability, state power and the capacity to decide Addiction: How far can the NHS go to support addicts who won’t help themselves? An ‘unwise’ decision can have very serious consequences for the person making it. However, they should not be stopped from making that decision just because it seems unwise to the person helping them decide, and nor should they automatically be judged to be lacking capacity because of that unwise decision. But what happens when a person lacks mental capacity or when their mental capacity fluctuates? Who is the ‘decision maker’ then? 3 Who is the decision maker? The answer to the question ‘Who is the decision maker?’ can be expressed as a continuum as illustrated in the figure below.

On one hand there are people who can make decisions for themselves given the right help. In other cases, more formal processes are needed. We consider these cases now.

3.1 Shared decision making Shared decision making occurs when someone needs help with making some or all decisions. It concerns the continuous involvement of an individual other than the person whose decision it is. In terms of the decision making as it is being considered in this course, the person should be included as much as possible whether or not they have capacity. As far as possible, the decisions of a person who lacks mental capacity should be shared decisions, rather than decisions made on their behalf by someone else. Box 2 gives examples of people who may be involved in helping someone who lacks mental capacity to make decisions. The primary decision maker is the person who lacks mental capacity. Usually, the more complex the decision, the greater the need to involve people with expertise in mental capacity, who are in the lower half of the list, although this is not a requirement. Box 2 People who may be decision makers The individual with or without capacity Next of kin – if they have capacity Members of the wider family Friends Members of community groups, churches, social organisations Employers Care staff Care home staff Social workers and social work managers GPs and medical staff, dental staff Police Lawyers The Court of Protection

3.2 Who decides on your behalf? Imagine you lack mental capacity. Perhaps you can recall what it felt like when you drank too much alcohol or you came around from an anaesthetic. Try to remember how this made you feel. Now try this activity about Doris. Activity 3 Helping Doris Allow about 20 minutes

Doris is an 89-year-old woman, living alone. You are a relative who lives some distance away and you’re concerned that Doris is losing her memory, not looking after herself properly and is no longer able to make decisions for herself. Visit the websites of two local authorities, one of your local area and one a different UK nation from your own. By looking at two different websites you get the opportunity to search a website that may not be as familiar to you. Find out: how you would report concern about Doris to social services what role you have as her relative. Does the information that you have found help you to know if a decision maker is needed for Doris and if so, who might that be and for what decision? Make notes in the box below. If you have found it difficult to locate any required information you may wish to look at some other tools provided here: Social Care Institute for Excellence: Mental capacity assessment tools From the information you have found when searching the different websites you may have noticed that local authorities do not all use the same process for enabling you to access the information. You may also have noticed that there will be different referral processes and not each authority asks the same information of you. This exercise may have been straightforward or you may have found this frustrating. Imagine what this might be like for Doris if she does not have a relative or someone else able to make these enquiries on her behalf.

3.3 How is a decision made on behalf of someone else? According to an idea first put forward by a community learning disability nurse, Jenny White, there are at least seven principles that should be followed by someone who is making a decision on behalf of a person who lacks mental capacity (Mencap, n.d.). These are listed in Table 1 along with a mnemonic by which they can be remembered. Table 1 The seven factors

R	Consider whether the person can Regain capacity
E	Encourage and Enable participation of the adult throughout the decision
F	Take into account the adult’s past and current Feelings about this decision
L	Is Life-sustaining treatment an issue?
E	Show Equal consideration and non-discrimination
C	Consider all relevant Circumstances
T	Take the views of others into account

3.4 Other types of decisions and supports Other decision-making processes exist, the most common of which are: best interests decisions, advance decisions, appointees, deputies and lasting powers of attorney. A brief description of each is provided in Table 2. Table 2 Some of the different types of decision making processes and roles

Best interests decision	A best interests decision is, as the name suggests, made in the person’s best interests. One person’s best interests may differ from another’s. Best interests apply to decisions about finance, personal welfare and health care. A best interests assessor should be the most appropriate person involved in that decision except where a lasting power of attorney is in place.
Advance decision	An advance decision is a refusal of specific medical treatment in certain circumstances. It can be made by anyone over 18 who has the mental capacity to make the decision.
Appointee	If an adult does not have property or savings, their finances can be managed by someone called an appointee. Or, in Scotland a court appointed guardian under a guardianship order.
Deputy	A deputy is appointed by the Court of Protection and has legal authority to make particular decisions for someone who lacks capacity. This can be for a one-off decision or to take ongoing responsibility for making decisions on a person’s behalf. A deputy is necessary for property and for complex financial matters and may be necessary for personal welfare where a series of decisions is needed over time or where family members and health and social care services disagree. Scottish law provides for short-term or occasional (and thus generally less invasive) interventions by anyone with an interest in the property, financial affairs or personal welfare of the adult with incapacity. There are safeguards. For example the views of the ‘named person’ The Public Guardian also supervises any person operating under the authority of an intervention order.
Lasting power of attorney	A person who has capacity can chose someone ahead of time to be their attorney with a lasting power of attorney. This person can then make decisions on their behalf should they lose capacity in the future. This could be decisions about their property and affairs or about their health and welfare, or both.
Independent mental capacity advocate	Someone who has been specially trained to represent and support people who are not able to make certain decisions and do not have family or friends who are able to speak for them. They provide information to make sure the decision is made in the person’s best interests.

One further decision-maker is that of the independent mental capacity advocate. The video below illustrates what an independent mental capacity advocate does. It shows how one advocate decided how best to proceed when someone he was supporting was having difficulty eating. The role of the Independent Mental Capacity Advocate [MUSIC PLAYING] WILLIAM When was the last family visit Dawn? DAWN Um, I'd have to check the book, but I can't remember one. He talks about a sister sometimes in Cornwall, or maybe it's Devon. WILLIAM Now is a good time? DAWN Mm, morning's best. WILLIAM Mr. Robinson, I'm what's called an independent mental capacity advocate, an IMCA. But you can call me William for short. I'm here because you're having trouble eating, Mr. Robinson. MR. ROBINSON I like my porridge. WILLIAM That must be because you find it much easier to get down? MR. ROBINSON I like the porridge. WILLIAM I've been speaking with your doctor, Doctor De Silva. And she thinks we should discuss the possibility of putting a tube in. A peg that will help the food get right down into your stomach where it will do most good. MR. ROBINSON Where's Mary? WILLIAM I'll leave you to it, Mr. Robinson. His wife? DAWN Died 12 years ago. WILLIAM Yes, yes, Mrs. Thomas. Peter Robinson, he's having trouble swallowing. Peter Robinson, Mrs. Thomas, your brother. [FORK SCRAPING ON PLATE] DAWN I managed to get some of that pear you like. I'll remember to use more care. [GIGGLES] Here you go. Mm, looks great. And another. Let me get that. There you go. You enjoyed that, didn't you? WILLIAM Can I have a word, Dawn? DAWN Yeah. Just a minute. (QUIETLY) I'll see if I can get you some of that fish pie tomorrow. I know its your favourite. There. There we go. WILLIAM That didn't look too bad. He seemed to be swallowing quite a bit of that. DAWN Well, I spend my time on it. I know he likes? WILLIAM And he doesn't like the dining area? DAWN No, he likes his room. [SQUEAKY DOOR] WILLIAM So how long have you been his care giver? DAWN Six years. WILLIAM And what do you think about the peg? DAWN Well it's not that difficult to make his food nice for him is it? WILLIAM According to his doctor he is not eating, he's losing weight and he's not getting the nutrition that he needs. I will be speaking to the speech and language therapist as well, but your opinion is important too. Does he get upset? DAWN Some people think it's a bit tricky, but we always get along. Could you-- could you pass me that tea towel, please? WILLIAM I have to go and write up my report. So if there's anything else that you think is important, it would be really helpful. Give it some thought, eh? DAWN What are you going to recommend? WILLIAM It's Doctor De Silva's job to decide what's in Mr. Robinson's best interests. What I can try and do is work out what he might prefer. I have no idea which way it will go. Do you mind if I use the office next door the type up my notes while they're still fresh in my mind? DAWN No, that's-- that's fine. WILLIAM (VOICEOVER) It was very difficult to get Mr. Robinson's views directly, but Mr. Robinson's caseworker Dawn Azura has been invaluable in providing an insight into what his wishes might be. She has shown that with a little care and forward planning, Mr. Robinson can be fed satisfactorily. And she's provided evidence that food has always been an important part of his life. WOMAN So what do you think about the peg? WILLIAM I think I'm glad I asked the advice of the person who knows him best. But if they decide not to go ahead, you're going to have your work cut out. You'll have to let the rest of the staff into the secrets of what Peter likes to eat and how he likes to eat it. [MUSIC PLAYING]

In summary, there are various decision-making processes that support and protect people who may lack capacity to make certain decisions.

This week’s quiz Check what you’ve learned this week by doing the end-of-week quiz. Open the quiz in a new window or tab then come back here when you’ve finished. Week 2 quiz Summary The key learning points of this week are: Mental capacity relates to decisions that can be everyday decisions like what to wear or more significant decisions like where to live. There are ways of helping people to make decisions for themselves. People have the right to make decisions that other people might think unwise, but this does not mean they lack the capacity to make a decision. You should now be able to: describe different types of decision and the ones that no one else can make explain how decisions are made and what helps people make decisions explain what is meant by, and who is, the decision maker when a person lacks mental capacity or has fluctuating mental capacity describe in simple terms how decision makers decide describe in simple terms what is meant by an unwise decision. Week 3: Mental capacity and the law Introduction Mental capacity has a different legal framework in each UK nation. Despite the differences – such as the names and dates of the acts – each is underpinned by similar principles. This week you explore these principles and how they apply in real-life situations. To begin, you look at the historical background and how each of the acts developed. By the end of this week you should be able to: name the mental capacity law that applies to each nation of the UK explain the principles of mental capacity as set out in law regardless of the UK nation to which they apply describe in some detail each of the main principles of mental capacity explain how the principles apply to real-life situations. 1 How the law developed The legislation that applies specifically to mental capacity is relatively recent. Previously these matters were dealt with through various pieces of legislation and guidance rather than through specific mental capacity legislation. The law relating to capacity has come about at different times in each of the UK nations. Each act has a slightly different title and date. The first of the acts to be implemented was in Scotland. It is called the Adults with Incapacity (Scotland) Act 2000 and came into force in that year. In England and Wales, the title changed while under development to refer to ‘capacity’ rather than ‘incapacity’; the Mental Capacity Act 2005 was implemented in 2007. The most recent act is the Mental Capacity Act (Northern Ireland) 2016. Differences in implementation are partly a result of devolution. However, one of the most important differences is that in England, Wales and Scotland a separate mental health act has been retained and a new capacity act added, while in Northern Ireland the acts relating to both have been joined. The following timeline provides a summary of the major developments in the law regarding mental capacity since the 1990s in England and Wales, Scotland and Northern Ireland. You will be introduced to key points in the timeline as you continue working through this course.

2 Mental capacity principles You now look at the principles that underpin mental capacity legislation in each of the UK nations. What are they and how can they be applied in real life? It is important to understand the principles upon which each of the acts are based and to begin to understand where these may differ but, as importantly, where they are the same. The first act that you will consider is that which applies in England and Wales.

2.1 Mental capacity England and Wales The main purpose of the Mental Capacity Act 2005 is to provide a legal framework for adults to make decisions about their lives. It is designed to protect and empower vulnerable people who lack capacity. It applies to all adults aged 16 and over living in England and Wales, although some parts only apply to adults when they are 18.

The act echoes what you have learned in Weeks 1 and 2: Adults have a right to make their own decisions wherever possible. If someone is unable to make decisions, others may act for them. The act enables all adults to plan ahead for such a time when they may lack capacity and decisions need to be taken for them. The video below features Baroness Finlay, chair of the Mental Capacity Forum, talking about the five principles of the Mental Capacity Act 2005. They are also summarised in Box 1 below. These principles are very similar to those in the law in Scotland and Northern Ireland. Mental Capacity Act principles [MUSIC PLAYING] BARONESS FINLAY The act is there to empower people to make decisions and support them when their capacity for making decisions is impaired. It means that you have to look at what that individual needs, and it is specific to a decision at a specific time. It's not a blanket judgement of their mental capacity. The five principles of the act underpin the whole act. I think it's easiest to remember them with the five fingers of your hand. First of all, presume somebody has capacity unless you can prove that they don't Secondly, remember people might need support to make a decision. They might need their hearing aid in, be in a quiet environment, not be tired, not be frightened. Might need their glasses on. Might need things simply explained. And thirdly, remember, that's the one peaking up-- that people can take unwise decisions. We all take unwise decisions sometimes, but we have capacity to do it. But when somebody lacks capacity the fourth and the fifth come in, and that is really awesome power in your hand. The fourth one is when you take its best interest in behalf of that person. Think what they would want as the decision. Get all the information you can. Consult people. And when you make that decision, the fifth one is it should be the less restrictive option. You cannot keep people under your thumb, even if it's easier for you. The forum is aimed to bring together people who got a particular interest in improving the application of the Mental Capacity Act everywhere across all sectors. That's not just health and social care. That's in finance sectors, in banking, in shops, everywhere across society. But it also is aimed to not stigmatise people, decrease the fear of the Mental Capacity Act, and help people realise that it applies to all of us in society when we're faced with somebody who lacks capacity for a particular decision. So we welcome anyone who is working to disseminate and improve the application of the Mental Capacity Act. The information on the forum is logged on the Sky website. And there is a specific section on mental capacity. That's a really good video on there. There's resources on there for people to draw down on, and they can find a link there and register that they are interested in being involved in the mental capacity forum

Box 1 The five key principles of the Mental Capacity Act 2005 Principle 1: A presumption of capacity Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. This means that you cannot assume that someone cannot make a decision for themselves just because they have a particular medical condition or disability. Principle 2: Individuals being supported to make their own decisions A person must be given all practicable help before anyone treats them as not being able to make their own decisions. This means you should make every effort to encourage and support people to make the decision for themselves. If lack of capacity is established, it is still important that you involve the person as far as possible in making decisions. Principle 3: Unwise decisions People have the right to make decisions that others might regard as unwise or eccentric. You cannot treat someone as lacking capacity for this reason. Everyone has their own values, beliefs and preferences which may not be the same as those of other people. Principle 4: Best interests Anything done for or on behalf of a person who lacks mental capacity must be done in their best interests. Principle 5: Less restrictive option Someone making a decision or acting on behalf of a person who lacks capacity must consider whether it is possible to decide or act in a way that would interfere less with the person’s rights and freedoms of action, or whether there is a need to decide or act at all. Any intervention should be weighed up in the particular circumstances of the case. (Source: SCIE, 2016)

2.2 Mental capacity in Scotland The principles of the legislation in Scotland and Northern Ireland are set out below. As you read through them, bear in mind two points that also apply to the Mental Capacity Act for England and Wales: Respect for personal autonomy. This means that if a person has the mental capacity to make a decision, including decisions on their health, welfare and finances, this decision should be respected. All adults are assumed to be capable of making decisions. This assumption can only be reversed on evidence of a lack of capacity. Adults do not have to prove capacity or have it certified. Rather, it falls to the person questioning a person’s capacity to establish lack of it.

Section 1 of the Incapacity (Scotland) Act 2000 contains a set of general principles that apply to the whole act. Box 2 Principles of the Incapacity (Scotland) Act 2000 Principle 1: Benefit There shall be no intervention in the affairs of an adult unless the person responsible for authorising or effecting the intervention is satisfied that the intervention will benefit the adult and that such benefit cannot reasonably be achieved without the intervention [s.1(2)]. Principle 2: Minimum intervention Where it is determined that an intervention [in the affairs of an adult under or in pursuance of the Act] is to be made, such intervention shall be the least restrictive option in relation to the freedom of the adult, consistent with the purpose of the intervention [s.1(3)]. Principle 3: Take account of the wishes of the adult In determining if an intervention is to be made and, if so, what intervention is to be made, account shall be taken of – … the present and past wishes and feelings of the adult so far as they can be ascertained by any means of communication, whether human or by mechanical aid (whether of an interpretative nature or otherwise) appropriate to the adult [s.1(4)(a)]. Principle 4: Consultation with relevant others In determining if an intervention is to be made and, if so, what intervention is to be made, account shall be taken of– the views of the nearest relative and the primary carer of the adult the views of– any guardian, continuing attorney or welfare attorney of the adult who has powers relating to the proposed intervention any person whom the sheriff has directed should be consulted, the views of any other person [including the named person [1.(4)(b)]] appearing to the person responsible for authorising or effecting the intervention to have an interest in the welfare of the adult or in the proposed intervention, where these views have been made known to the person responsible, in so far as it is reasonable and practicable to do so [s.1(4)(b)-(d)]. Principle 5: Encourage the adult to exercise whatever skills he or she has Any guardian, continuing attorney, welfare attorney or manager of an establishment exercising functions under this Act … shall, in so far as it is reasonable and practicable to do so, encourage the adult to exercise whatever skills he [or she] has concerning property, financial affairs or personal welfare, as the case may be [s.1(5)]. Source: Adults with Incapacity (Scotland) Act 2000

2.3 Mental capacity in Northern Ireland Mental health legislation in Northern Ireland is the most recent to be published.

The principles of the Mental Capacity Act (Northern Ireland) 2016 are set out in Box 3. Box 3 Principles of the Mental Capacity Act (Northern Ireland) 2016 Principles: capacity 1.—(1) The principles in subsections (2) to (5) must be complied with where for any purpose of this Act a determination falls to be made of whether a person who is 16 or over lacks capacity in relation to a matter. (2) The person is not to be treated as lacking that capacity unless it is established that the person lacks capacity in relation to the matter within the meaning given by section 3. (3) Whether the person is, or is not, able to make a decision for himself or herself about the matter— (a) is to be determined solely by reference to whether the person is or is not able to do the things mentioned in section 4(1)(a) to (d); and (b) accordingly, is not to be determined merely on the basis of any condition that the person has, or any other characteristic of the person, which might lead others to make unjustified assumptions about his or her ability to make a decision. (4) The person is not to be treated as unable to make a decision for himself or herself about the matter unless all practicable help and support to enable the person to make a decision about the matter have been given without success (see section 5). (5) The person is not to be treated as unable to make a decision for himself or herself about the matter merely because the person makes an unwise decision. (6) Nothing in subsections (1) to (5) removes any obligation that a person may be under in a particular situation to take steps to establish whether another person has capacity in relation to a matter. Principle: best interests 2.—(1) The principle in subsection (2) applies where, under this Act— (a) an act is done for or on behalf of a person who is 16 or over and lacks capacity in relation to whether the act should be done; or (b) a decision is made for or on behalf of a person who is 16 or over and lacks capacity to make the decision. (2) The act must be done, or the decision must be made, in the person’s best interests. (Source: Mental Capacity Act (Northern Ireland) 2016) You will be exploring assessment of mental capacity in more detail in Week 4 but in this section you have also learned that in establishing whether someone lacks capacity, certain principles must be followed. Included amongst these are the following. All practicable help and support be provided for decision-making Making an unwise decision does not mean a person lacks capacity. No-one can be deemed to lack capacity on the basis of age, appearance, their condition or assumptions about behaviour. If a person is found to lack capacity to make a particular decision, even with support, the substitute decision maker needs to determine what is in the individual’s best interests. So, how are these principles applied in real life?

3 Applying the legal principles To help people to apply the principles in the legislation, guidance was issued in the form of a Code of Practice. You will look at this now along with examples of real-life situations, and think about the influence of values and attitudes. As you have learned in this week so far, each nation of the United Kingdom has its own mental capacity legislation, each accompanied by a Code of Practice. You will now learn what a Code of Practice is as it relates to England and Wales.

3.1 The Code of Practice A Code of Practice is, in effect, a guide as to how an act should be applied in practice. It applies to everyone but is especially useful for professional staff who have a duty to follow it. Lord Falconer, in his foreword to the Code of Practice that accompanied the Mental Capacity Act 2005, describes the act as: a vitally important piece of legislation, and one that will make a real difference to the lives of people who may lack mental capacity. (Department for Constitutional Affairs, 2013, Foreword) Lord Falconer gave the following reasons for his statement, which also apply to the legislation in Scotland and Northern Ireland: It will empower people to make decisions for themselves wherever possible It will protect people who lack capacity by providing a flexible framework that places individuals at the very heart of the decision-making process It will ensure that they participate as much as possible in any decisions made on their behalf, and that these are made in their best interests It also allows people to plan ahead for a time in the future when they might lack the capacity to make decisions for themselves (Department for Constitutional Affairs, 2013, Foreword) In the next activity you consider how these principles are applied in practice. Activity 1 Mental capacity law in practice Allow about 20 minutes Read the Guardian article ‘Experts say doctors over-keen on labels after woman died from refusing treatment’. Think about the following questions: 1. Consider the following principle from the Mental Capacity Act 2005 (England and Wales): Principle 1: A presumption of capacity Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. This applies to all adults whatever their ability or disability. In the box below, answer the following questions: Do you think that the woman in this case had the right to make her own decision? Do you think that she had the capacity to do so? What did the judge decide? Do you agree? 2. Now remind yourself of the following principle: Principle 3: Unwise decisions Every adult has the right to make decisions that others might regard as unwise or eccentric. You cannot treat somebody as lacking capacity simply because you disagree with their decision. In the text box below, answer the following questions: Do you think the woman in the article was making an unwise decision? How do your thoughts about her decision affect your assessment of her capacity? Deciding whether a person has the capacity to make what others might think is an unwise decision is not an easy thing to do. In this case, you may have found yourself making a judgement about the woman’s lifestyle and thinking about the consequences of her decision not just for herself but for her family. But when considering decisions that may be unwise, these feelings have to be put to one side. The important issue is that the person is empowered to make the decision. In this case, the woman’s decision had serious consequences but she was nevertheless allowed to make it.

3.2 Values, attitudes and actions In Week 2 you began to consider what impact people’s values and attitudes can have on the actions people take either when making a decision, be that wise or unwise, and also the impact of any actions. Sometimes people’s attitudes towards different lifestyles and behaviour can affect their views on whether someone should be allowed to make a particular decision. You end this week by thinking about values, attitudes and actions, and their importance for anyone dealing with mental capacity. What do we mean by ‘values’ and ‘attitudes’? Generally speaking a value is a belief about what is right and what is wrong. Some people also think of values in terms of what is important and what is unimportant. Mental capacity legislation is based on principles or, in other words, principles, standards or qualities that should be cared about and should contribute to people’s behaviour. Accepted values in society are usually supported by rules, mostly unwritten, about what is socially acceptable behaviour, both on a personal and an individual level.

Activity 2 What are values? Allow about 5 minutes The figure above shows some examples of values. Identify the values you think you uphold, as well as those that go against what you believe in. Can you also identify any values that clash or contradict? Make some notes in the box below. Your personal values and attitudes can have an impact on your role in mental capacity. For example, they might affect your assumptions about what is best for a person who may lack mental capacity and your judgement about what is in their best interests, especially where they disagree. You may be trying to support someone who may lack capacity and whose values contradict yours. In such situations, it can be helpful to be aware of the values that you hold to be important. Activity 3 What is important to you? Allow about 10 minutes Answer the questionnaire on personal values provided below. It is best to do this fairly quickly without thinking about the statements too much, but if you want to spend more time on it – perhaps because the concept of thinking about values still feels strange – then do so. There are no right or wrong answers to these questions – it is designed merely to get you to reflect on your own values and what you hold important. As you click through the questionnaire you will see longer lists of questions that fill the screen. The questionnaire enabled you to consider values that included: being the best and helping others to achieve caring and having compassion for others doing what is right and proper the importance of being part of a group or a community. Based on your results, consider: how you might work alongside people whose values are different from your own what might happen if you are supporting someone who may lack capacity and who has different values to your own how your values might affect your assumptions about what is best for a person who may lack mental capacity and your judgement about what is in their best interests, especially where they disagree. Values drive our actions Thinking about how your values drive your actions will bring this week to a close. However, values are central to how matters relating to mental capacity are managed and you should keep them in mind as you continue with the rest of this course. Some people think it is very important to help others, especially if they think they are in a vulnerable situation. Others think that getting involved is an intrusion on a person’s privacy and that people who help are merely do-gooders, interfering where it may not be wanted. You may well have thought about these matters when you were looking at the images and also found yourself agreeing with some but not all. As you learned in this section, actions that are driven by values and attitudes are complex and need to be robustly examined in matters that concern mental capacity. You will explore these in more depth in Weeks 5 to 7.

This week’s quiz Check what you’ve learned this week by doing the end-of-week quiz. Open the quiz in a new window or tab then come back here when you’ve finished. Week 3 quiz Summary The key learning points from this week are: England and Wales, Scotland and Northern Ireland have different legislation relating to mental capacity. All three acts are based on similar principles. Each act is a framework that enables decision making for those who lack mental capacity and that protects and empowers them to make decisions even when their decisions seem unwise to others. We need to be aware that people may have different values to our own and that our own values can affect how we view other people’s mental capacity and decision making. You should now be able to: name the mental capacity law that applies to each nation of the UK explain the principles of mental capacity as set out in law regardless of the UK nation to which they apply describe each of the main principles of mental capacity explain how the principles apply to real-life situations. In summary, UK law lays out the principles relating to mental capacity, including those that should be followed when making decisions on someone’s behalf. But who decides whether someone has mental capacity and on what basis? It is to the subject of mental capacity assessment that you now turn. Week 4: Assessing mental capacity Introduction Before the mental capacity legislation, the assessment of whether a person had mental capacity and whether they could make their own decisions or would need another person to do so on their behalf was made by a professional, usually a doctor. This has now changed. The person who should do the assessment for everyday decisions is usually the adult most directly involved with the person at the time. This could be a family member or a paid carer. For bigger decisions such as those involving aspects of medical treatment, the doctor or other healthcare worker who will be providing that treatment is usually the assessor. This week, you undertake an assessment of mental capacity step by step through a case study. But first, how does a mental capacity assessment relate to other assessments in care settings? By the end of this week you should be able to: explain what is meant by the assessment of mental capacity describe who undertakes an assessment of mental capacity describe the test for assessing mental capacity and how it is applied describe how an assessment might be undertaken. 1 Assessments in care In care settings, assessment refers to the process of appraising someone’s needs. This person may require help with daily living tasks, financial matters, health concerns, accommodation or relationship problems. An assessment is similar to finding the pieces of a jigsaw and fitting them together in a way that best suits the person being assessed.

Following the implementation of mental capacity legislation in all nations of the UK, all assessments have to take account of the person’s mental capacity, whatever the type of assessment. These range from a care management assessment of need to the assessment of the needs of a child and their parent in a child protection situation or in a criminal justice setting. All assessments now need to screen for mental capacity.

1.1 Assessing mental capacity There are a number of steps involved in a mental capacity assessment. These are shown in the box below. Box 1 Five key steps to assessing mental capacity The starting point – the principles of the presumption of capacity and respecting a person’s entitlement to make unwise decisions with capacity are the starting point for any capacity assessment. Capacity is decision and time specific – saying that someone lacks capacity is meaningless. You must ask yourself: “what is the specific decision that needs to be made at this point in time?” If you don’t define this question before you start undertaking the assessment, the exercise will be pointless and may lead to the wrong outcome. Preparation for capacity assessments – remember that a crucial step of assessing capacity is to prepare yourself for the assessment. Don’t go in with a blank canvas. Take all practicable steps – you have to ask yourself if there is something that you can do which might mean that an individual would be able to make the decision for themselves. Applying the test – the MCA test for capacity has two aspects: the diagnostic element (that is, is there an impairment of, or a disturbance in the functioning of, the mind or brain?) and the functional element (is the person unable to make a decision because of the impairment?). Being unable to make a decision means being unable to understand, retain or “use or weigh” information relevant to the decision, or to communicate their decision. (Source: Valios, 2016) Activity 1 Assessing mental capacity: the first four steps Allow about 20 minutes Watch the 'Assessing mental capacity' video. Think through how you would apply steps 1 to 4 from the list in Box 1 as if you were doing an assessment of the man’s mental capacity. (You first watched this video in Week 2 in relation to ‘unwise’ decisions.) A video about ‘unwise decisions’ [MUSIC PLAYING] [BIRDS SINGING] MAN Oh. [SETTING DISH ON TABLE] WENDY What do you want for lunch? I'm doing eggs, all right? Are you in a bad mood with me, Raymond? Look, I'll be out of your hair in 10 minutes. Then you'll be rid of me till Monday. RAYMOND That'll be nice. WENDY Wendy. RAYMOND What? WENDY That'll be nice, Wendy. RAYMOND Oh. WENDY It is my name. I'm sure you weren't meaning to be rude. Well, Raymond, it's been a pleasure as always. Have a nice weekend. Yeah. RAYMOND Eh, the lottery. WENDY Well, seeing as you asked so nicely, how can I possibly refuse? RAYMOND Here. WENDY Haven't you got anything smaller? RAYMOND All of it. WENDY Raymond, you only put two pounds a week on the lotto. RAYMOND I want 50 lucky dips. WENDY 50 pounds is a lot of money. RAYMOND I know how much 50 pounds is. WENDY You can't afford it. RAYMOND It's my money. WENDY Yeah, but you have to buy food. You have to pay the bills. RAYMOND It's my money. WENDY I know it's your money, Raymond. But have a think about this for a minute, yeah? Well, what happens if you lose all of it? RAYMOND What happens if I win, eh? Yeah. I would be able to afford proper servants then, not pushy girls like you, telling me what to do all the time. WENDY I am not a pushy girl. And I'm certainly not your servant. This is madness. RAYMOND I am not mad. I'm old. WENDY I didn't mean that. I just mean that I've got a responsibility to make sure you're OK. RAYMOND To tell me what to do, you mean? WENDY All right. You obviously know your own mind-- if you think you can afford it. RAYMOND I can afford it. WENDY All right. Do what you like. I'm logging this in the book. RAYMOND Oh, yeah. WENDY I'm not taking responsibility for how you waste your money, Raymond. Spend it how you like. RAYMOND I will. WENDY Let me tell you this for free. Chucking your money away like this won't make you happy, whatever. RADIO ANNOUNCER And the first ball tonight is number four, one of the most frequently selected balls on the Saturday lotto draw, number four. RAYMOND Four. Four. Yeah. Got four. [LAUGHS] Yay. RADIO ANNOUNCER 27. RAYMOND 27, 27, yeah. There's one, and there. Woo-hoo! Hey, hey! Yeah, yep, yep. Ha! Ooh, another one. There. RADIO ANNOUNCER 12. RAYMOND 12, 12. Wait, wait, wait, slow down. Slow down, will you? Eh, four, 27, 12. Yeah, there you go. Ha! RADIO ANNOUNCER So tonight's final lotto number is 13. That's 1-3. 13. [PAPER CRINKLING] Good luck, everybody. WENDY Well, that was a waste of money. RAYMOND 13, 13-- ah. Come in, number 13. Your time is up. Ha ha! 13 is my lucky number. Ha! Woo-hoo! 13, yes, 13.

You may also wish to use any of the assessment documents that were introduced in Week 2, Activity 2, or use one of those provided on the Mental Capacity assessment tools page of the Social Care Institute for Excellence site. Work through the first four steps only at this point. You will return to the final step in the following activity. When you were undertaking the assessment you may have noted that you: needed more information or felt uncomfortable balancing the wishes of the man with what you thought might be best. needed to protect the individual and could also empower him to make a decision despite the fact that you may have disagreed with it? thought that this was a relatively minor decision and making it may not have had too many severe consequences. In fact, you may have crossed your mind that he actually gained a lot of enjoyment from the purchase of the lottery tickets. How difficult do you think this assessment would be if the situation had more serious consequences? You now look at the fifth step in this list, which is the two-stage test for assessing mental capacity.

1.2 Applying the test for assessment of mental capacity Before the implementation of mental capacity legislation, there was no specific clinical or legal procedure for assessing mental capacity. Assessments, where they did take place, were based upon medical outcomes and diagnosis. Over the years, this method was increasingly replaced by what is known as a functional approach. However, for most health and social care workers and informal carers such as relatives and friends, formal guidelines did not exist. Meanwhile, the legal test that was usually applied was that contained within the case known as Re C, relating to a man with a diagnosis of schizophrenia who was deemed capable of making the decision to refuse the amputation of his gangrenous foot. The case is explained in Box 2. Box 2 The case of Re C Adult and his refusal of medical treatment The case: Re C (Adult: Refusal of Medical Treatment) [1994] 1 All E.R. 819 The judge in this case said that the test of capacity had three stages: Does the patient comprehend and retain information? Does the patient believe the information? Does the patient weigh that information up, balancing risks and needs to arrive at a choice? Even following the implementation of mental capacity legislation, it remains the case that there is no set procedure for the assessment of capacity. There are no specific forms that must be filled in, nor is there a certificate of incapacity (although in some cases in Scotland, general practitioners must complete a certificate). You will consider why this is shortly. Nonetheless, a framework has been developed and this is known as the test of mental capacity.

1.3 The test for mental capacity For situations where there may be reason to question a person’s mental capacity to make a certain decision at a specific time, the Mental Capacity Act 2005 sets out a two-stage test based on a combination of functional and diagnostic methods. The test is outlined in Box 3. Box 3 The two-stage test of capacity Stage 1: The diagnostic test of mental capacity Does the person have an impairment of, or disturbance in the functioning of the mind or brain (it does not matter if this is permanent or temporary)? Stage 2: The functional test of mental capacity If the answer is yes, does it make the person unable to make the decision? This can be found out if, after all appropriate help and support to make the decision has been given to them, they cannot: understand the information relevant to that decision retain the informationuse or weigh up that informationcommunicate their decision. If any of these apply, the person lacks the mental capacity to make the decision. The test of capacity involves a two-step process involving the diagnostic and the functional. It is also important to note that it is based on ‘reasonable belief’. In other words, the assessment has to ascertain if it is more likely than not that the person lacks mental capacity. Now that you’ve looked at how to assess capacity, the next question is: who should do it?

2 Who assesses? There is no particular role with designated responsibility to undertake assessments of mental capacity, nor is there any legal requirement for assessments to be carried out by particular people. This remains the case despite the introduction of legislation and guidance. In practice, certain people are more likely to conduct mental capacity assessments than others, these can include social workers and doctors.

Activity 2 There are no rules Allow about 5 minutes Why do you think there are no formal roles or procedures for assessing mental capacity? Write your thoughts in the text box below. The reason there are no formal roles or procedures for assessing mental capacity in law is that the assessment process needs to be comprehensive in the decisions it may apply to, while at the same time practical in its application. The absence of such direction is meant to avoid ‘blanket’ assessments where a ‘diagnosis’ of lack of capacity could be applied to every decision. Before the legislation, an assessment of capacity would have applied to both everyday and bigger decisions and perhaps only made by a doctor. Now, others such as a family carer can be involved. Capacity legislation covers all decisions, both the everyday decisions and more significant ones, and makes clear that the assessment of capacity must be in relation to a particular decision at a particular point in time. It is ‘designed to empower those in health and social care to assess capacity themselves, rather than rely on expert testing’ (SCIE, 2016).

2.1 What about more complex situations? Where more complex or serious decisions need to be made, it may help to involve a professional with skills and experience in assessing mental capacity. They may be medical, financial or legal professionals. Their expertise tends to be very useful in deciding whether a person has capacity or not, including in diagnosing whether they have an impairment of or disturbance in the brain. In making any decision on behalf of someone who lacks capacity, the best interests principle should be applied. This is that anything done for or on behalf of a person who lacks mental capacity must be done in their best interests. For all circumstances a best interest checklist is provided, in this instance through the Mental Capacity Act for England and Wales, but this checklist is applicable in all the UK nations, see Box 4. The list forms the basis of most mental capacity assessments. Box 4 Best interests: a checklist In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of— the person's age or appearance, or a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests. The person making the determination must consider all the relevant circumstances and, in particular, take the following steps. He must consider— whether it is likely that the person will at some time have capacity in relation to the matter in question, and if it appears likely that he will, when that is likely to be. He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him. Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death. He must consider, so far as is reasonably ascertainable— the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity), the beliefs and values that would be likely to influence his decision if he had capacity, and the other factors that he would be likely to consider if he were able to do so. He must take into account, if it is practicable and appropriate to consult them, the views of— anyone named by the person as someone to be consulted on the matter in question or on matters of that kind, anyone engaged in caring for the person or interested in his welfare, any donee of a lasting power of attorney granted by the person, and any deputy appointed for the person by the court, as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection(6). The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which— are exercisable under a lasting power of attorney, or are exercisable by a person under this Act where he reasonably believes that another person lacks capacity. In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned. “Life-sustaining treatment” means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life. “Relevant circumstances” are those— of which the person making the determination is aware, and which it would be reasonable to regard as relevant. (Source: Mental Capacity Act 2005 c. 9 Part 1 Preliminary, Section 4)

3 Doing an assessment The last section of this week provides an opportunity for you to observe a mental capacity assessment. Activity 3 Assessing Roger’s mental capacity Allow about 30 minutes You are now going to end Week 4 by taking a look at an assessment of Roger. You watched this video in Week 2, so you may want to just skim through it. This time, take note of how Tracey the social worker conducts the assessment and the skills she uses. Note also the environment in which the assessment takes place. Make notes in the text box on how you think this helps her get a true picture of Roger’s capacity to make decisions about money. Your notes will help you in this week’s quiz. Supporting Roger to manage money [MUSIC PLAYING] NARRATOR In this film we meet Roger, a man with learning disabilities living in supported housing. Roger has recently moved with the help of Tracey a social worker, and does not have an appointee to look after his benefits. Tracey is concerned that the staff at Roger's home may be crossing a line between supporting Roger to decide how he spends his money and making some financial decisions for him. Tracey is meeting Roger to assess his capacity to make decisions about his money. One outcome could be to apply for an appointee. At the same time, Tracey is trying to find out if Roger would like more help to make his own financial decisions. Roger and Tracy role play this situation. Extracts are shown of what would be a longer process. TRACEY The reason I've come to talk with you today is to have a chat about what you understand about your money, the money that you have coming into you, the money that is spent and to have a discussion about how you do that and how people help you with that. OK? ROGER Yeah. TRACEY And to see if there's any ways that we can improve how that works. ROGER Yeah. TRACEY OK. So I won't be writing very much, but sometimes I might need to do that so that I don't forget things. ROGER Yeah. TRACEY OK. First of all, can you just tell me a little bit about who in the house helps you with things around money? ROGER Miss-- the support workers, they ca-- they-- they help me with my money. TRACEY Can you think of some of the things that they help you with? ROGER They help me sometimes with my budgeting. Yeah. TRACEY What does that mean? How do they help you with that? ROGER Well, sometimes I have to go to the Building Society to-- it's in town-- to-- if I want something, I have to-- if it's not much... TRACEY And the support workers come with you then? ROGER Yeah. They go with me. TRACEY And when you get there, what do you have to do? Do you have to pay for anything when you get to the bank? ROGER I have a bank book. I get help with the counter. TRACEY So you take your bank book. Is that to-- ROGER To get the money out. TRACEY To take money out. OK. So the support worker comes with you to the Building Society and you take your bank book. ROGER Yeah. TRACEY And take some money out. Who decides how much money to take out? ROGER Before we set on a journey, or-- I ask before how much-- how much money to get out. TRACEY So can you tell me the kind of things that you need to use that money for? What do you spend it on? ROGER Some of the money I have to use for food con-- food contribu-- TRACEY Food contribution? ROGER Yeah. I have to pay rent, and I get money for if I go anywhere out important to different places. TRACEY You do quite a lot of different activities, don't you? ROGER I do, yes. TRACEY So do you need a bit of money for each of those activities? ROGER Starts in my house has a lot me to... too-- have some money on me. Yeah. For different things. TRACEY OK. ROGER Yeah. TRACEY I know that you're very interested in going out on your own. ROGER Yes. TRACEY And you do that quite often. ROGER Yeah. TRACEY Yeah? OK. So I want to ask you about how much money you take if you went out on your own. For example, if you went out to go and have some lunch, is that something you do? Isn't it? ROGER Yeah. TRACEY So if you were going out to have some lunch without a support worker, do you know how much money you might take with you? ROGER Sometimes I take 4 pound If I don't have 4 pounds in my tin, they let me have 10 pounds for lunch, TRACEY OK. So what would be one of your favourite lunches? What do you like to have when you go to your cafe? ROGER I like to-- I know it's not very healthy, but I do like fish and chips. TRACEY Do you? OK. ROGER Yeah. TRACEY Do you have a drink when you have your fish and chips? ROGER Yeah. Yeah. With me I like a hot drink. I love tea or if they don't serve tea, I ask could I have a cup of coffee. TRACEY OK. So you like to have a hot drink with you. ROGER Yeah. TRACEY OK. If you had fish and chips and a tea, could you guess how much that might cost? ROGER Some of the cafes are a dear. TRACEY Some are dear and some are not so dear. So would it be-- what would a dear one be I wonder? If you had to pay 5 pounds for your fish and chips and tea, would that be dear or not dear? ROGER No. I don't mind. TRACEY You don't mind that, 5 pounds. ROGER No. TRACEY That seems quite reasonable, doesn't it? ROGER Yeah. TRACEY Fish and chips and a tea. ROGER Yeah. TRACEY Have you got-- you told me earlier about each day you have your money, your support worker helps you to puts it in your money bag. ROGER Yeah. TRACEY You've got that with you? ROGER Yeah. TRACEY Would you mind getting it out and showing me what you've got there? ROGER I'll put this down. TRACEY Excellent. Right. So let's have a look. Can you open it up? ROGER I can open it. TRACEY Right. So what's that note there you've got? ROGER I have 5 pounds now. TRACY You've got a 5. OK. 5. And what else have you got there? Can you count it out for me? Are you able to? ROGER That's 5 pounds. 6. TRACEY 6. ROGER 7. TRACEY 7. ROGER 7.50 TRACEY 7. 50. Excellent. ROGER Yeah. TRACEY OK. So that would be enough then-- ROGER For-- TRACEY So if you spent a 5 for your fish and chips and your tea, what have you got left there? ROGER 2 pounds 50. TRACEY 2.50. So say you you've been out for your lunch and then you're on your way home, and you fancied something from the shop. Do you ever pick up anything from the shop on the way home? ROGER Buy a Mars sometimes. TRACEY A Mars? ROGER A Mars bar. TRACEY Yeah? How much is a Mars bar these days? ROGER Oh, it's 50 or 60. TRACEY Is it? Would you like to have the chance to take more out with you in case you might see something that you fancied like a-- I don't know-- something a bit bigger? ROGER Yeah. TRACEY Do you ever go clothes shopping? ROGER Clothes shopping. Yeah. I go with him Mister. TRACEY You do. OK. That's something you do with them. All right then. Well, maybe that's something that we can talk to the support staff about. ROGER Yeah. TRACEY Because you do seem to be-- I'm sure you're quite careful with your money when you go out. ROGER Yes. TRACEY And you seem to know how much you need to spend and how much you've got in your bag there. OK. Well, that's been really helpful talking about that, Roger. Do you ever get to see the information about what's going in your bank account or the Building Society account? It's called your statement. Do ever see those? ROGER I get shown where that is. TRACEY OK. So you look at that? ROGER I look at that. TRACEY OK. So it sounds like the support workers at your home-- ROGER Yeah? TRACEY They're quite helpful to you? ROGER Yes. TRACEY And they're quite involved in helping you to make decisions about getting your money from the Building Society and helping you to decide what you need to do. ROGER Yeah. TRACEY How much you're going to need each day when you go out. ROGER Yeah. TRACEY Yeah. Is there some ways that the support workers could help you to make even more decisions about how to use your money? ROGER Yeah. Yeah. TRACEY I wonder what might be helpful to you. ROGER Yeah. TRACEY Do you feel that you can-- if-- for example, if you wanted to spend something-- go and buy, I don't know. You like listening to music, don't you? Do you ever go and buy music? ROGER I do. I do. TRACEY So if you wanted to go and buy some music, or even if you wanted to buy something bigger like something to listen to your music on, would you feel able to make a decision on that? ROGER I would have to talk it through first. TRACEY OK. So it sounds like the support workers help you quite a lot. ROGER Yeah. TRACEY Yes. ROGER Yeah. Yeah. TRACEY And is that something that you're happy with? ROGER Yes Yeah. I wouldn't know where the money was going to. TRACEY OK OK. Is there anything that you'd like to learn to do with your money or anything you'd like to learn about managing your money that you don't do now? ROGER [INAUDIBLE] to know sometimes where with the money going to. TRACEY That these are the things that-- the ways in which your money is being spent that you don't usually see. ROGER No. TRACEY OK. Would this be things like how much is going on the rent and bills and things like that? TRACEY Yeah. TRACEY OK. So maybe there's a way that we could talk with the support workers about involving you more in seeing what money's coming out of your account and what it's being spent on. ROGER Yeah. Yeah. Yeah. TRACEY OK. Well, that sounds like a really good idea. ROGER Yeah. TRACEY Because it is your money, isn't it? ROGER Yes. TRACEY Yes. All right, Roger. It's been really, really helpful having this chat with you this morning about your money and how you manage it. ROGER Yeah. TRACEY That's really good. And there's some things that we can talk to your support workers about. ROGER Yeah. TRACEY Is there anything else that you wanted to say to me? ROGER I do like having-- I like having money here to-- TRACEY You like having money on you. ROGER Yeah. Yeah. It would be-- If I didn't-- if I didn't have any money, I'd be a bit lost. TRACEY Yes. Oh, good. Well, that's important. That's important for you to have your own money, be able to go out when you choose, and spend it on the things that you want to spend it on. Yeah. Good. That's really important. ROGER Yeah. TRACEY All right, Roger. Well, if there's nothing more that you want to say or tell me, then I think we've spoken enough about that today. All right. Thank you very much. ROGER Yeah.

Tracey, the social worker in the film, demonstrated a number of skills: She involved Roger as much as she could. This added time to the interview. She planned the timing and the environment carefully. She assumed Roger had mental capacity throughout. She listened to what he was saying. It is likely that she reminded herself of the concept of reasonable belief. The video shows a shortened version of what actually happened. It may be that in real-life situations the interview for assessing mental capacity happens on more than one occasion.

3.1 ‘Rules’ for supporting and assessing The so-called ‘rules for assessing mental capacity’ are summarised here: Start by thinking I can make a decision. Do all you can to help me make a decision. You must not say I lack capacity just because my decisions seem unwise. Use a best interest checklist for me if I can't make a decision. Check the decision does not stop my freedom more than needed. Activity 4 What does all this mean in practice? Allow about 10 minutes You will have perhaps noticed as you have learned about mental capacity, decision making and now the assessment of capacity that there are a number of issues that affect each stage. What do you notice about the rules provided above? Take a second look at these and, thinking about what you have learned so far make a note of three key things that occur to you. Provide your issues in the following table:

Key issue one	Key issue two	Key issue three

When you have recorded your three issues, think about what this means when you need to deal with someone who lacks mental capacity and who may need your help in decision making. There is one example provided in the table. Try to fill in two more.

Possible issue	What does this mean in practice?
Putting the person at the centre	Always remember to put the person first. The issue relates to and is about the individual.

A range of issues need to be taken into account at all stages of assessing and supporting someone who may lack mental capacity. These include: All adults are presumed to be able to make their own decisions unless they are judged as lacking the mental capacity to do so. Ensure that the primary consideration is that unless you can prove otherwise, the person can, with help, make their own decision. Try to understand what the person’s preferences may be. Use language, other forms of communication and information that help the person understand the decision they are making and the risks and benefits of different outcomes. Try to put aside your own thoughts and feelings. If a person is making an unwise decision this does not mean that they lack capacity.

This week’s quiz Check what you’ve learned this week by doing the end-of-week quiz. Open the quiz in a new window or tab then come back here when you’ve finished. Week 4 quiz Summary Well done on reaching the end of Week 4! So, what have you learned over the last four weeks? You now know that mental capacity is simply the ability to make decisions for yourself, and that the first three principles of mental capacity legislation say that regardless of a person’s diagnosis or disability, they should be presumed to have mental capacity. You also learned that as much support as possible should be given to a person to help them make a decision before it is decided that they lack the mental capacity to do so. These principles emphasise that assessment should be based on the process of decision making and not on the content of a decision. You learned that what appears to be an unwise decision must not be taken as evidence that the person lacks mental capacity; nor should a person’s age, appearance, condition or behaviour affect a judgement of their mental capacity. Finally, you looked at how to assess mental capacity using the two-stage test and who can do this. Over the next three weeks you look at three different types of people who may lack capacity. You should now be able to: explain what is meant by the assessment of mental capacity describe who undertakes an assessment of mental capacity describe the test for assessing mental capacity and how it is applied describe how an assessment might be undertaken. You are now half way through the course. The Open University would really appreciate your feedback and suggestions for future improvement in our optional end-of-course survey, which you will also have an opportunity to complete at the end of Week 8. Participation will be completely confidential and we will not pass on your details to others. Week 5: Children and young people Introduction Mental capacity is a complicated enough topic in relation to adults, for whom the presence or lack of capacity is often highly debatable. For children, however, and especially for young children, there is a general presumption of incapacity, not capacity. Of course, this evolves through childhood, but, as we all know, every child is different. While chronological age is important, it is not the only factor that determines whether decision making should be at the discretion of the parents or the children themselves. This week you explore these issues in greater depth. By the end of this week you should be able to: describe how a child’s presumed innate incapacity to make important decisions evolves through childhood to capacity explain when and how parental decision making may be shared with or delegated to ‘competent’ children explain how the age of 16 is an important threshold for asserting the legal presumption of capacity describe some of the difficulties and ambiguities relating to capacity for young people aged 16 and 17 describe two examples of exceptional situations where the capacity of a child or young person may be especially compromised: child sexual exploitation and the interface with mental health services and law 1 Decisions, children and young people Assessing mental capacity in children is undertaken routinely by parents, teachers, family members and a range of other people and professionals with whom the child may come into contact.

In this section you consider some of the areas of decision making for children where the presumption of capacity is made on the basis of age.

1.1 At what age is it legal? The issue of mental capacity in children is complex. There is a natural and entirely appropriate acceptance in society that children have a different and usually more limited capacity to make safe and reliable decisions for themselves and others compared to adults. Their ability to make decisions depends on both their chronological age and level of development. Parents and carers therefore become used to making decisions on behalf of children. The question of when a child’s mental capacity is presumed and decision making handed over, and for which decisions, lies at the heart of the parenting relationship. Some decisions are interpreted differently in different cultures and different families, and can change through the generations. The age for some thresholds, however, is formally defined in law. For example, the age of criminal responsibility – the age at which someone can be charged with a criminal offence and brought before a court – is a significant threshold. It is the age at which a child is considered to have sufficient maturity and mental capacity to know the difference between right and wrong in relation to criminal behaviour and thus to be legally accountable for their own actions. In England, Wales and Northern Ireland this age is set at 10 years. In Scotland it is 8 years, although the age at which a child can be prosecuted is 12. The United States and Mexico set their age of criminal responsibility at 6 years, Ireland 12 years, Italy 14 years, Portugal 16 years, and Argentina and Peru 18 years (NationMaster, 2014). The assumptions that lie behind such legal thresholds are complicated and embedded in the history of each country’s social legislation. However, in some way the age of criminal responsibility reflects each country’s interpretation of the balance between welfare and justice. Societies in which children are seen as vulnerable and deserving of welfare even through the latter stages of childhood tend to have a relatively high threshold of criminal responsibility, as in Argentina and Peru. On the other hand, societies in which the emphasis is on protection and justice and where it is felt that even relatively young children should explicitly learn lessons of social responsibility tend to set the threshold for criminal responsibility earlier. Many other age-related decisions have far less serious consequences than being charged with a criminal offence. These include transitions in education, viewing particular films, taking on a part-time job, buying alcohol, getting married, buying a pet and making a will. All of these have legal age limits, whereby a child is not formally deemed to have capacity until a particular age, even though the child and/or their parents and carers may not necessarily agree. Do you know from what age children can get a job, babysit, sign a passport themselves or take part in an acrobatics performance? In the next activity you can find out. Activity 1 At what age can I …? This short quiz will raise your awareness of how certain behaviours become linked to certain ages. The quiz is really for fun, just to start you thinking about some of the issues.

At what age is it legal to drive a car in the UK? 16 17 18

At what age is it legal to buy a pet in the UK? 12 15 16

At what age is it legal to consent to having a tattoo in the UK? 14 16 18

At what age is it legal to adopt a child in the UK? 18 21 23

At what age is it legal to have sex in the Republic of Ireland? 16 17 18

At what age is it legal for men to marry in China? 18 20 22 Certain activities are regulated by law and are only ‘allowed’ once a young person is a certain chronological age. On the other hand, society may have mechanisms to help young people gain the autonomy and responsibility they need beyond the legal age; for example, for young people leaving care. This is recognised, for example, for young people leaving local authority care, where technically the leaving care age is 18, but legislation allows for and in some instances requires local authorities to provide support beyond that age.

1.2 Parental responsibility You now look at the decision making that parents undertake on behalf of their child. The term used to describe this in England, Wales and Northern Ireland is parental responsibility. In Scotland, the concept of parental rights is linked directly with parental responsibilities. Where the law in Scotland defines a person as a child that increases the protection that the law offers them but decreases the child’s own personal freedoms. The law likes clear cut-off points. In Scotland there have always been a number of important ages at which a child increases their ability to take control of their own life. The age of 12 is important because a child can make a will at that age. A veto to an adoption order exists from the age of 12. The age of 16 is of crucial importance. At 16 a person may marry. 16 is the age at which compulsory education might come to an end. The age of 18 is of less importance. One of the few remaining consequences of reaching the age of 18 is the right to vote. The age of 25 is also important. (The Scottish Parliament, 2013). Parental responsibility in practice… Mother: Don’t do that, Janice! Janice (child): Why not? Mother: Because I said so. Below are some key facts about parental responsibility. Someone with parental responsibility for a child has the legal right to make decisions about them and their upbringing. Anyone who is considering making an important decision on a child’s behalf must obtain the agreement of all who have parental responsibility. The term ‘parental responsibility’ refers to ‘all the rights, duties, powers, responsibilities and authority which by law a parent of a child has in relation to the child and his property’ [Children Act 1989, s.3(1)]. In Scotland, parental ‘rights’ relate to where the child shall live, the right to direct the child’s upbringing and the right to maintain contact with them; and ‘responsibilities’ are vested in the child’s mother and father, if they were married, and later for the unmarried father if they subsequently are registered as the child’s father [Children (Scotland) Act 1995, ss.1-3]. This is also the case in England, Wales, and Northern Ireland. Parental responsibility can be acquired by others, but only through formal court procedures. This tends to be relatives, local authorities and adoptive parents. The law is very careful to articulate the nature and parameters of parental responsibility and how it is administered in the best interests of children. Legal advice should always be sought if there is any uncertainty about who holds parental responsibility when significant decisions are about to be made. Also, the extent of parental control changes through childhood and generally diminishes to zero at the age of 18, with some exceptions to decision making which are defined by the courts through evolving case law. Best interests The authority acquired by having parental responsibility is based on the assumption that all individuals and public bodies holding it will always act in the best interests of the child. Disputes about whether or not a person with parental responsibility is acting with the child’s best interests in mind are usually complex and ethically challenging, often requiring resolution in the courts. There are also some occasions when urgent action needs to be taken and the person with parental responsibility cannot be consulted. In such circumstances, it may be a defence legally to act without that consent, so long as it was in the child’s best interests. However, such situations are rare and usually relate to medical emergencies.

1.3 Competence to give consent Children may be in a position to make some decisions relatively independently, but there may be a question about whether they have the mental capacity to make others. For example, children under 16 are not necessarily considered legally competent to give consent to (or refuse) medical treatment. However, the person administering the treatment must assess whether the child has sufficient maturity to understand what is being proposed, even if they are under 16. If it is considered that they do and that the treatment is in the child’s best interests, it may go ahead even if a person with parental responsibility does not agree. This is known as Gillick competency. Victoria Gillick had four daughters. In January 1981 she wrote to her local health authority, West Norfolk and Wisbeach, asking them to confirm that her daughters would not be given any contraceptive advice under the age of 16 without her prior knowledge and consent. The health authority replied that it would be unusual to give this advice without involving a child's parents, but that ultimately the decision would rest with the medical practitioners involved and depend on their clinical judgement. There then commenced a protracted legal challenge initiated by Victoria Gillick. In 1984, her challenge was not accepted in the High Court, but later the Court of Appeal found in her favour. However, in 1985 the House of Lords reversed the Court of Appeal judgement (Scarman, 1985). In sum, it is now legal to decide whether a child is able to give consent to medical treatment on the basis of an assessment of the child's maturity and understanding of what is being proposed. This is known as an assessment of ‘Gillick competency’. Young people aged 16–17 years are deemed to be legally competent unless formally assessed otherwise. However, they cannot refuse treatment that is considered to be in their best interests by either a person with parental responsibility or the courts. They are therefore not in the same position as adults aged 18 and over who can refuse treatment if competent to do so. Activity 2 Gillick competency Allow about 25 minutes Read the NSPCC page about Gillick competency. Note some of the principal aspects of the Gillick judgement. Then watch the video below from 1985 about the Gillick case. In the text box, note the key points about children’s decision making and the clinical judgement of doctors prescribing contraceptives to children under 16 without their parents’ consent. Gillick video REPORTER This afternoon what's being called the Gillick judgement was overturned. The law lords voted by three to two that in exceptional circumstances, a doctor can prescribe contraceptives to an underage girl without her parents' consent. One Tory MP called it a day of shame. Mrs. Gillick says she has lost and lost badly. But the lords' ruling may only have refuelled the whole argument about sex and underage girls. Last December, Mrs. Victoria Gillick won a unanimous decision from three appeal court judges. VICTORIA GILLICK It is the best Christmas present that they could possibly have been for all families, millions and millions and millions of them. REPORTER They held that a doctor could not prescribe contraceptives to girls under the age of 16 without their parents' consent. This afternoon outside the House of Lords, it was all very different after Mrs. Gillick had heard her arguments rejected by three law lords in uncompromising terms. Lord Fraser disputed the view that an underage girl has no rights in such matters. "The degree of parental control actually exercised over a particular child in practise varies considerably according to her understanding and intelligence, and it would be unrealistic for the courts not to recognise it." Lord Scarman cast doubts on claims about the absolute nature of parents' rights over an underage girl. "Parental rights are derived from parental duty and exists so long as they're needed for the protection of the person and property of the child." Lord Bridge, the third judge reversing the appeal court decision, held, "It could not be contrary to public policy to prescribe contraception where it was the only means of avoiding a wholly undesirable pregnancy." Lord Brandon, the first dissenting opinion, fully backed Mrs. Gillick's views. He believed that anyone who promoted or facilitated underage sex could be guilty of a criminal offence. "It cannot make any difference that the person who promotes, encourages, or facilitates the commission of such an act is a parent, a doctor, or social worker." Lord Templeman, the other dissenting opinion, cautioned against giving doctors a general discretion to prescribe contraceptives merely because an underage girl might have sex. "Such a discretion would enable any girl to obtain contraception on request by threatening to sleep with a man." Public reaction has reflected the deep division in the lords themselves. Agencies involved in sexual counselling welcomed the ruling. DIANE MUNDAY I think it's a great victory for both common sense and the law. It shows that the law lords are in touch with how ordinary people lead their lives and how people behave and what is needed. That's not to say that anybody condones underage sex or thinks that girls shouldn't talk to them mothers. JOHN DAWSON We think this is a very wide-ranging judgement that will give a clear framework that will allow doctors to help patients. If they are unable to get the girl's consent to involve the parents, then this will allow doctors to make a judgement as to whether they should prescribe contraceptives or not.

Even at the highest level of the law in the UK, the Law Lords, there were considerable differences of opinion on the ability of young people to make decisions for themselves. However, the view proposed by the Gillick judgement prevailed. It remains the case today that if a child is competent to make an informed decision, then in certain circumstances contraceptive advice may be provided without the knowledge or consent of their parents. This decision will be made on the basis of the perception and judgement of the professional involved about what is in the child's best interests and whether they are capable of making up their own minds. On balance, it was deemed unrealistic to impose fixed age limits on matters that can vary enormously depending upon the maturity of the child and their circumstances. In the next section you look at the kinds of decisions made by children and young people that may require some consideration of mental capacity.

2 Children, young people and decisions You will now look in more detail at the different kinds of decisions that come up when working or engaging with children and young people. Generally, Gillick competency is relevant when considering issues related to contraception and medical treatment for children under 16. However, the 16th birthday is an important legal threshold for children in matters of capacity, so in this section, pre-16 and post-16 issues are considered separately.

2.1 Children under 16 In England and Wales, the Mental Capacity Act 2005 does not apply to children under 16. In Scotland there are provisions in the Age of Legal Capacity (Scotland) Act 1991, with a similar change at age 16. A child under 16 is therefore generally presumed not to have capacity, although they may be assessed as ‘Gillick competent’. Activity 3 Decisions made on behalf of children under 16 Allow about 30 minutes Making decisions on behalf of other people is not easy, especially if they are angry or distressed and therefore less able to understand what is being proposed, or if they are inclined not to tell the truth. But what kinds of decisions, other than about medical treatment, do professionals make about children, and how often do these involve an assessment of mental capacity? Watch the video below about a social worker, Liz Curry, in a local authority children and families team. Look for examples of Liz’s decision making. What is social work? Children and families NARRATOR In Tameside, near Manchester, senior practitioner Liz Currie is arriving for another day in Denton's Children's Social Work team. After starting her career in the voluntary sector, Liz has been with the Tameside team since 2008. LIZ CURRIE Coming to Tameside, because of the way that we work here, we don't have a separate duty team. We don't have a separate looked-after team. The area team does everything. And I wanted that very steep learning curve, and I wanted to get experience of all the different areas. I like that style or working, where you take something right from the beginning and follow it all the way through and build up those relationships with each your children and your families. NARRATOR Liz can have around 20 or 30 children on her caseload at any one time. Today's shift starts with a voicemail from a 12-year-old boy living in a children's home. He's unhappy and wants to leave. It's Liz's role to try to listen and to manage the problem. It may mean reinforcing the boundaries the young person needs to follow. LIZ CURRIE He's struggling there at the moment, because a new young person moved into that children's home, and he's really struggling to adjust to that. Generally, when he rings me up, it's because he's not getting his own way. And he's kind of hoping that I will change whatever decision has been made. What's up? What's been happening? Now, if you need some time out of that situation, you can go off down the park or whatever and then come back at an agreed time. He wasn't entirely happy with me. He did put the phone down on me, I think, a couple of (LAUGHING) times. Which he tends to do, when he doesn't hear something that he wants. I spoke to him, spoke to staff, to work out what was happening and what rules they were putting in place for him. Because, equally, we need to kind of support what they're doing but made sure he understands what they're doing, but also find a way out of that situation so that he and staff aren't, you know-- he isn't winding them up and getting annoyed and they're having to manage that all morning. NARRATOR With the situation stabilised, Liz will keep in close contact with the staff and the young person, to try to ensure the placement can continue. But her next case can't be dealt with over the phone. She's received a referral from another professional whilst on duty, around suspicions that a 12-year-old boy with learning difficulties may be involved in sexual activity and substance abuse. LIZ CURRIE We need to know whether parents know about that and what the supervision level is for the child. And also, having spoken to the child, he was very clear that there's a lot of people living in the house at the moment. There's a lot of arguing going on at the moment. And he's not actually very happy living there. NARRATOR Liz and family support worker Paul Wayne need to do a home visit, to investigate their concerns. LIZ CURRIE I think what we'd like to happen is to be able to sit down and have a discussion with Mum and Dad about where they feel things are up to with the child at the moment and how they think they're getting on in terms of supervising him, whether he's sticking to boundaries-- because that's been a problem in the past. We need to establish whether or not they can supervise him adequately and whether they would understand what the risks would be of not supervising him. NARRATOR Visiting children and families in the community is a crucial part of their child-protection work. LIZ CURRIE Ideally, we don't want to do unannounced visits, because obviously it's quite disruptive and rude to the people that you're visiting, to just have social workers banging on the door. But equally, if there's a concern that's been raised by another agency about the child, then we will do unannounced visits. Hiya! MAN About 10 o'clock last night. LIZ CURRIE I'm Liz, from Children's Social Work Team. You all right? This is Paul. I think home visits are one of the most useful parts of the job, in terms of engaging families, and in terms of assessing and understanding what's happening. I think the situation, when you get some people to come into the office and talk to you, it's a totally false situation. And you're not getting a true picture. You're just getting what they want you to know. Whereas if you see them at home, you're seeing them dealing with things that they can't particularly control all the time. The understanding of what it feels like to be that child, what experiences of being parented is this child having? You know, what's their life like, day to day? NARRATOR As with many unannounced visits, it can provoke a strong reaction towards the social workers. Went in and spoke to Mum. And she was-- I think she was a bit upset. She called Dad in, and he was-- he was-- PAUL WAYNE Really upset. LIZ CURRY Yeah, he was really upset. He was quite angry. He struggled to stay in the room, because he was feeling quite angry. So he went out. But Mum stayed and talked to us. She's agreed for a worker to spend a bit of time with him and work out what was his wishes and feelings are, what his view is of what, if anything, has happened. NARRATOR With at least one parent open to support, Liz will ensure the family receive the correct help to put effective supervision in place. Back in the office, Liz rushes into a multiagency meeting about a separate case. A teenage boy is causing concern. LIZ CURRY The difficulty, I think, is that everyone has a lot of concerns, but no one has a lot of evidence about the concerns. So you get quite a lot of people being worried about the child and saying things like, well, I think this is happening, but nobody knows. The Youth Offending team have expressed some concerns about what's going on for this child at the moment. And we're going to look at what information they have, whether it's information we've had before or not, what the basis of that information is. NARRATOR It's a case Liz knows well. And, despite the lack of evidence, her experience and intuition always told her that something was not quite right. Effective social workers need to apply professional scepticism to cases like this. LIZ CURRY Mum says exactly the right things, and I have no reason to disbelieve her, other than I have a feeling that she's not telling me the truth or that she's telling me the party line. But, you know, if you've got [INAUDIBLE] some parents who've got years and years of experience of working with the system and getting rid of professionals, they're very good. And she is very good. Yeah, I'm not disputing for a second her skills of getting rid of me. She's excellent at that. I think my intuition has held this case open, actually. I think we could quite easily have said, several years ago, they're not engaging. Let's shut it. NARRATOR New police information supporting her intuition is revealed in the meeting. And Liz believes she may need to escalate the case into a formal child-protection conference. First, she must discuss the evidence with team manager Tracy Rowe. LIZ CURRY We've got a lot of new information from police that I wasn't aware of. Police say that Mum spends a lot of time in the evening in the pub. They're saying they have been round, and she's been intoxicated. I think we are supported really well. I think one of the things I really like about this authority is the high level of support and the opportunities for discussing things. I read something saying that all intuition is biassed. To some extent, it is. So, if you're having intuition, as a worker and as a professional you have a responsibility to examine and think about, you know, what am I reacting to, here? And working with managers can help you explore some of that. There's very few facts. You know, you're on the hypothesis. You're on the, well, I've got this information that leads me to think this. And that doesn't mean that I believe that thing 100%. That means, at the moment my information leads up this way, and there's a possibility that I might be wrong. There's always a possibility that I might be wrong. NARRATOR Team manager Tracy agrees that Liz should consult the conference team, to take the case forward, as the new evidence clearly supports her initial concerns. TRACY ROWE You don't just pull it from thin air. It's your years of experience, it's your training, it's your knowledge. You may not be able to put your finger on what it is that's not quite right, but you sort of know. It's something that you do, sort of, I guess, you get more confident to rely on, and you get more confident in looking for what is it that's not feeling right. The majority of the time, when people say, it's not quite right, usually it isn't right. And when they explore with other professionals, they talk to other agencies on health, education, it sort of backs up that sort of feeling, really. NARRATOR After lunch at her desk, typing up the morning's notes, Liz is back on the phone in the afternoon, dealing with various children, professionals, and foster carers. A teenage girl on Liz's caseload is struggling in a new placement. The foster carer is concerned about how to deal with contact with an older sibling. It's Liz's role to provide ongoing advice and support for the foster carer, to ensure the safe care of the child. LIZ CURRY She's not supposed to see her sister unsupervised, at the moment, because of the concerns about who her sister was associating with. She could have put her in contact with people that are inappropriate and people that could sexually harm her and sexually exploit her. We're not convinced that she'd be safe. And our responsibility is to keep her safe. Now, if she goes against that and runs off to see her sister, then you need to report her missing. I think she's a really good foster carer with younger children. But I think she does struggle with teenagers. And, you know, the young person's a quite difficult, challenging teenager. We can't have a young person that's in our care, you know, put at risk like that. So we need to keep her safe-- which we have explained to this young person. But equally, you know, she's not that fond of boundaries. And she tends to kind of challenge. So, she may well challenge that. NARRATOR It's now midafternoon, and Liz is back on the road-- on her monthly home visit to 14-year-old looked-after child Paige. A month ago, Paige briefly ran away from her foster carers. Liz has been working with Paige for two and a half years and wants to make sure these current issues have been resolved. LIZ CURRY She wasn't very happy, last time I saw her. She was fine by the time that it ended, but she was quite-- things were disrupted a bit, at the time. So I needed to go and see her and see how she's been since then, see how everything's been going for her. Hello. WOMAN Come in. LIZ CURRY Thank you! Last time I saw her, she had just had the blip. It was the day, the day when she'd come back from doing a runner. I need to see how it's been since she got back. You know, how is she feeling? Is she still happy in the placement? You know, is she still having feelings about wanting to leave? Because sometimes she does, and I think that's natural. I also think particularly teenager is quite difficult. And quite a lot of teenagers-- I don't want to be here anymore. But when you've got the option of not having to be there anymore, that kind of magnifies it, makes it worse. I saw your mum the other day. PAIGE Did you. LIZ CURRY Yes. Have you spoken to her recently? PAIGE Um, I phoned her. When I stayed at her house, that night, she only had, like, Coke and cream soda on the side. She's won't drink it. Which is pretty good. LIZ CURRY But overall you've been getting alright with Kevin. PAIGE Yeah. made friends with her. LIZ CURRY Good. PAIGE Yeah, fine. LIZ CURRY Good. She was 11, the first time I met her. She's gone from being a quite sulky, quite difficult young lady into, she's absolutely brilliant now. You know, she's lovely. Does brilliantly at school. Does really, really well. You know, she's working above average. Teachers love teaching her 100% attendance, participates in lots of activities. You know, wants to go to college. She's great. She's doing so well. The change in her is amazing. PAIGE I've known her for about two and a half years, I think. And, at first, when I first got put in care, I didn't like her at all. Because I thought it was her fault, and she was saying that my mum was a bad mum and all that. But I think, now I've actually grown up, I can understand where she's coming from when she says that my mum-- like, she's not a bad mum, but she couldn't look after us. I understand, now. LIZ CURRY Part of my assessment, when I go, isn't just what she's telling verbally, it's what she's telling me with her behaviour and, you know, how she appears. It's nice when she's in a good mood and she seems really settled. And she was clear that, you know, she's getting on really well with the carers at the moment, that the blip we were having last time was just a blip, and that's fine now, and she's moved on from that. NARRATOR Having ended the visit on a positive note, Liz returns to the office, to write up her case notes. Her job can be filled with emotional highs and lows. And she's constantly aware of her responsibilities to the children and families that she serves. LIZ CURRY Taking children into care is an extremely difficult thing to do. And I think that's right. I think it should be. I think it should have an emotional impact on you, and you should question it. It's never a decision that I would make. It's a decision that we make in consultation with managers and senior managers and the legal department. It's very final. And, you know, the courts describe it as a draconian measure, and it is. And seeing how distressed the parents are, it is upsetting. It really is upsetting. I like it when children start to trust you. And I also like it when you can see good outcomes for children, you know, when you can see them perhaps-- you know, things change within their family, and they're a lot happier at home, or they're settled in foster placement and they're a lot happier there. And when you see a child that's gone from, say, having kicking off at school all the time, terrible school attendance, and then you see them perhaps living in a foster placement and wanting to go to school every day and thinking about career and thinking about future, and you think, well, actually if that child had stayed at home, that wouldn't have happened. And the fact that now they've got more choices is because of something that we've done. The other thing that I really like is how well everyone gets on as a team. I think our team is really close and supportive. We get on really well with people from other agencies. And it's actually a really nice atmosphere to work in. And I really like that.

How often were the decisions related to assumptions about mental capacity, even though this term is not used? Make notes in the box below. The video begins with Liz speaking by phone to a 12-year-old boy in a children’s home who was not happy and wanted to leave. Liz listened to his concerns, discussed the issue with staff and managed to stabilise the situation. Next there was a home visit to a 12-year-old boy with learning disabilities, where there were concerns about inappropriate sexual activity and substance abuse. Liz managed to establish a working relationship with the mother, in order to more accurately hear and understand the views of the boy and assess the support required. Following a discussion with her manager about another case involving a teenage boy, in which they decided to convene a formal meeting, Liz spoke by phone to a foster carer dealing with a dilemma about whether to allow a teenage girl to see an elder sibling. Finally, Liz visited 14-year-old Paige, a looked-after child. Paige reflected on decisions Liz had taken on her behalf in the past and acknowledged that they had proved to be in her long-term interests. Liz tried to work with the children and young people where appropriate and intervened with those who had parental responsibility.

2.2 Young people aged 16 and 17 years Legally, a person aged 16 or over is presumed to have capacity, unless assessed otherwise. However, there are some situations – such as making a will, making an advanced decision to refuse treatment and particular medical procedures – in which a young person aged 16 or 17 is not automatically assumed to have capacity. In these cases, other legislation may be invoked and assessments such as that of Gillick competency carried out, to allow for legally sound decision making. Activity 4 Supporting the capacity of young people aged 16 and 17 years Allow about 15 minutes Watch the video below about three young people in Sheffield. As children under 16, they received treatment from Child and Adolescent Mental Health Services (CAMHS). At the age of 16, however, they were no longer eligible for a service from CAMHS and had to register with adult mental health services. They talk about their anxieties and concerns in making this transition. [MUSIC PLAYING] NARRATOR Transition from child to adult mental health services can be challenging. In the second part of this film, we'll see how one city has been trialling ways of improving the transition process. But what do young people themselves have to say? NAOMI I had quite an unstable home life, so I think there was always some form of issue there. I mean, mental health's such a wide spectrum. JOHN Around about my 14th birthday, I sort of stopped-- I stopped going to school and things and had to-- my mental health, I suppose you'd say, was really bad. NAOMI Moving to secondary school was really, really difficult because it seemed like all my peers around me just suddenly had grown up, and I couldn't handle that. And I think I started to really, really struggle with depression. CAMHS were so important to me because they were my someone. They were my parent, in a way. They were professionals, but they were the best parent I could have had. JOHN I remember I just liked it because it was a friendlier atmosphere than school. It was a bit more of a supportive atmosphere. You know what I mean? So, from that point of view, that was probably very good for me. JAMIE One session they looked at my file and were like, oh, you're 16 in a couple of weeks. And it was just sort of like, oh, well we won't be able to treat you anymore. So I only had like-- that was my last session. And I was like, oh. NAOMI Around the time of me turning 18, obviously, the change is around me being a looked after child. There's obviously some changes in the system in that as well. So there was that anxiety as well. And I was just kind of scared. I remember just being really, really scared about what people were going to do with me. JOHN They don't accept that there's a wider world that you're still going to be in. And if things don't work out in that world, all that medication and counselling is not really going to do anything positive. JAMIE They could have, a couple months before, said, look, when you're 16, we are going to stop, but it'll gradually work. It just sort of was cut. NAOMI I would describe it as falling down a cliff with rocky bits. So you kind of would fall, and then you would hit something, think you'd finished the bottom, and then you'd just fall even more. And you get lost in the system. NARRATOR They all found transition challenging, especially when so much else in life was changing too. JAMIE To be treated for eating disorders, there's a certain criteria you have to have for the different eating disorders. But quite a lot of them are like loss of periods and stuff like that which, being a male, you can't-- it's impossible to have a symptom such as that. It's just like you've been kicked out and no one's going to help you. It just felt like they'd given up on me, like I wasn't worth being given help. NAOMI Adult services can be very, very scary because you can be with people that are a lot, lot older, maybe more acutely ill. And it's very frightening because, inside, I still feel a child. JAMIE So it sort of was confirming what my eaten disorder voice was saying. And so it made it a lot more difficult. So I had to-- there was a lot of demons to battle. NARRATOR Moving to adult mental health services confused all these young people, and it felt like a challenge to be accepted. JAMIE They started a new NHS adult eating disorder service in my local area. It was run by the NHS, but not everyone was fully aware of the service. So I'd go to my GP and say, oh, there's this new service. Can you refer me to it? And he hadn't heard of it. All of the different places are battling for the same cause. But they do it separately, so they're not as effective. Whereas if they all teamed up together, they'd make a lot more impact to be able to help people a lot better. NARRATOR Better information and communication would have helped everyone. NAOMI Transition has to come, but it needs to be made a lot better. There needs to be more communication. There needs to be better support for young people, understanding of the process, preparation for the process, and young people's involvement in the process. JAMIE You could say the positives to what you think with those, but then you could also say, this is what I think we need to improve. Because it's fair enough, they might all sit down and say, oh, we need to change this, we need to change this. But if they get someone from the perspective of the patient, then they can say more wider and what they think that needs to be improved, rather than what the professionals think need to be improved. NAOMI You don't need anything really magic. You just need someone to talk to and someone who you know and are familiar with and just wants to listen. JOHN I guess it was just a sense of being taken seriously, you know? And being like it mattered, I guess, is the nice-- would've been nice. JAMIE I want to go forward. I want to be able to say, I'm recovered. But it's just needing that little bit of help to make sure that I am going to get there, someone to help me get there, because it's near-on impossible and very difficult to do it on your own. NARRATOR They all agree that if they'd been consulted, transition could have been smoother. In part one, young people needing support with their mental health reported problems at transition to adult services. The second part of the film shows how services in Sheffield have responded to these problems. The case studies include voluntary sector counselling services, peer study transition groups, and a transition clinic. They're all directly addressing issues raised by young people themselves. Sheffield has a combined health and social care trust. GUY HOLLINGSWORTH We're integrated between health and social care. So social workers are still employed by the local authority, but they're managed within the trust, and they're part of our community mental health teams and quite a number of other services too. So we see ourselves as trying to work as holistically as we can with service users. In many places, CAMHS, the Child and Adolescent Mental Health Services, work up until 18. In Sheffield, they're only commissioned to work up until 16. So the PCT fund us to work with people from 16 upwards. And there are some challenges there, I think. NARRATOR What happens next for these young people is crucial. With the aim of reducing their anxiety and improving engagement with adult services, a transitions clinic is being piloted. JOY OWENS Come in and have a sit down. NARRATOR CAMHS psychiatrist, Dr. Joy Owens, is introducing Chloe, in person, to the adult service. JOY OWENS Chloe, this is Helen, Dr. Crimlisk, who is the adult psychiatrist from Eastglade Adult Mental Health. NARRATOR She's centrally involved in the discussion about her own future. JOY OWENS How have been since we saw you last time? How have things been? CHLOE Now I've had the help off the CAMHS and everything, it really has helped me get through. Really has helped me get through school. If I don't think I've come here, then I wouldn't have been at school. HELEN CRIMLISK Now that you're 16, the way things work here in Sheffield is that you come over to adult services. Now, what we need to do today is just think a little bit about what you want from that and how we plan that. CHLOE'S MUM When Chloe's punched windows and doors, she's quite scary. And sometimes I'll look at her and I'll think, there is a mental issue there, more than just a hyperactivity type thing. And it's a bit scary for us going into adult with them symptoms, like. HELEN CRIMLISK The ADHD doesn't give you that thinking time. You know, an emotion comes into your head, and you don't think about the consequences of doing something. You just go off do it. And one of the things that the medication does is to give you a bit of thinking space. So you can learn that as well. There are ways of learning. And as you get older, you'll find that that becomes a little bit easier. Yeah. I think, for Chloe, it's a way of making a link with adult services. Seeing a face rather than just getting an appointment. Before we set up this system, we had a real problem with young people being referred from children's services to adult services, and then not turning up at adult services. JOY OWENS They just kind of got lost, really, between the ending of the plan of care with our service and the next sort of step to adult mental health. And we realised that there was this gap and that we needed to try and do something about that. So we set up the transition clinic. NARRATOR The clinic's useful for clinicians too. The next session brings up information not covered in Jessica's referral letter. JOY OWENS We're meeting you both today because you're now 16. And if you want to continue on medication, then we need to transfer your care over to adult mental health services. And how are you getting on with the medication? JESSICA I missed a day. After that, I were hearing voices. And then I went back on it, and they went. JOY OWENS And did the voices say anything to you? JESSICA I walked to the shop with my sister and we were arguing. They were just saying really evil stuff. HELEN CRIMLISK If you were to have any more of these episodes where you hear voices, we'd really like to know about it, because occasionally the medication can cause that as well, and we wouldn't want that to happen. So do let me know if that happens again. JOY OWENS The fact that she's met Helen and engaged with her means it's much more likely that she will go to her first appointment and continue engaging with that service. It does take a huge amount of planning, but it's definitely worth it when you see the outcomes and you hear about people from Helen who've gone on to their service and having a really good outcome. NARRATOR Mental health in the world beyond CAMHS might depend on adult services, but they usually have a very different feel and emphasis. GUY HOLLINGSWORTH Because we're an integrated health and social care trust, we may have access sometimes to social care ways of responding to people's needs that are more appropriate for individuals. We're very, very keen on the recovery approach within the trust. Recovery isn't just about getting better. Recovery is getting your life back-- feeling more in charge of your own destiny, even if you are still struggling with some of the symptoms of your mental health problems. Clearly, 16 is a crucial age in terms of individual's development anyway. It's a key time in that transition from the dependence of childhood to the independence of adulthood. NARRATOR This pilot transition group bridges the age span of 16 to 25. SARAH WALKER In adult services, the responsibility is much more on the client. That can be quite daunting for people who've come through CAMHS and it's been quite intensive to now being in adult mental health services and maybe having a little bit less input from us. There's only so much that we can do without almost creating a dependency that's unhealthy. NARRATOR Young people support each other and learn together about managing their own conditions. MALE TEENAGER 1 More you know about your illness, better you'll be able to cope with it. MALE TEENAGER 2 Yeah. I were a bit hesitant about coming to a group, and I've found that I've made friends. I've been able to get a lot more off, and I've de-stressed myself a lot better. NARRATOR They've not always enjoyed school. Mental health can improve just by being in a supportive peer group and building social skills. MALE TEENAGER 1 Before I'd come into this group, I wouldn't really like to talk to new people or owt. I'd stick to-- but now, I'm not as shy. I'm not as shy as what I used to be. SARAH WALKER It's become part of their routine to come on a Monday. And so where maybe the rest of their lives are quite chaotic, this is one thing that is stable. FEMALE TEENAGER I like to know what I'm doing from the next day to the next. If there's nothing there, then there's no point in doing anything. SARAH WALKER There can be lots of changes. One of the people referred to the group was pregnant, lost the baby. Tried to come to the group, couldn't. Tried to go to an apprenticeship, couldn't. So there's lots of different events going on to try and work through. And I can think of lots of different situations with these young people where there's significant events going on in their lives, and they just don't always know how to deal with that. NARRATOR Young people leaving CAMHS don't always feel a need or meet the criteria for statutory adult mental health services. Even if they do, the demands and perceived stigma often mean they drop out. In downtown Sheffield, a voluntary counselling service shares a building with other resources they might want to use. So, at times to suit them, and without feeling stigmatised, it's easy for them to drop in. LEAH BOOKER It's a sort of one-stop shop approach so that young people can come in and feel comfortable within a building. It's not identified, for example. We've not got a big label outside that says, this is where you come for counselling. So it's very much anonymous when they arrive. For many of them, they've been in and out of different services over a number of years before they come to us, sometimes really engaging with services, at CAMHS level up to 16, but then very much feeling abandoned when they get to 16, and really feeling like they fell through a hole. JOHN I went to the doctors, and they just said, oh, what do you want me to do about it? and offered me medication, which I didn't want, because I wanted to try and sort myself out a bit, as it were. I basically ended up looking stuff up myself and finding things and contacting them myself, which I thought, a lot of people with mental health issues probably aren't going to do. SARAH WALKER In terms of resources, I think it's worthwhile to put the time and the effort in now and hopefully prevent on going, sort of the revolving door syndrome of people coming back or getting stuck. And hopefully, we're equipping young people now so they can go on into their lives and do positive things and be the people that they want to be. MALE TEENAGER 1 I feel like I've come on leaps and bounds since I'm not as immature as I was before I started. I don't have no flare-ups or owt like that anymore. GUY HOLLINGSWORTH Clearly, if individuals fall through and don't get the service they need, they're then high risk that their mental health deteriorates, and they come back, and there's more costs to service as response. There's quite a conflict between the payment by results agenda in health and the self-directed support individual budget agenda in the local authority. So I can imagine that some areas are struggling with those tensions and resolving them wrongly, in my view, by divorcing. And it has been quite difficult in some areas. But in Sheffield, as I say, we're confident that we can meet those challenges. LEAH BOOKER Not all young people will be attracted to our service, and not all young people would be attracted to CAMHS or adult mental health services. But I think, between us, if there was that level of co-creation and commitment and communication, I think we'd have a lot better shot at actually developing services that young people were interested in tapping into. NARRATOR Transition can be tough, but the right support makes a difference. And it doesn't have to break the budget.

In the text box below, note what you think might have arisen for some of these young people had they not made a successful transition to adult mental health services. Imagine what kinds of outcomes might later bring into question the young people’s capacity to make decisions for themselves. In the video, it seemed that adult mental health services failed to engage successfully with the young people. This may make it more likely that, in the future, they are assessed as not having the mental capacity to make certain decisions. Affording as much opportunity to engage in services is consistent with the general principle in mental capacity legislation that people should be supported to make decisions themselves before an assessment of whether they lack capacity. While every assessment of capacity must relate to circumstances at the time of the assessment, it is also important that services promote future opportunities for mental capacity to be assessed if needed.

2.3 Decisions in the Family Court and the Court of Protection For decisions that children and young people may be able to make – depending on their age and the type of decision – their mental capacity may be in doubt or there may be conflict between them and their parents or carers. In such cases, decisions about their best interests are addressed in the courts. Decisions in these cases are usually made through the Family Court in England and Wales or through a Children's Hearing in Scotland. There is no simple equivalence between legal systems here In circumstances where children and young people have substantial and enduring lack of capacity, decision making can also be referred to the Court of Protection. This is an English court where decisions about financial matters are made for people who, because they lack capacity, cannot make them at the time they need to be made. In Scotland, the Sheriff may make a Guardianship Order, appointing an individual to act for a person with incapacity on an ongoing basis. This is usually for three years or more and in principle can allow for wide-ranging powers over a person’s affairs. The Office of the Public Guardian (Scotland) (2017) provide the example given in Box 1. Box 1 Monika’s story Monika is 16 years of age and needs someone to help make decisions about her finances and healthcare. Monika has been awarded a large compensation payment because of an injury sustained at birth. The award will be used to pay for her on-going specialised care costs and for adapting the family home to allow Monika to continue to live there. Monika’s parents have applied to the sheriff court for authority to make decisions over the next three years, about accessing and investing her finances and making healthcare and welfare decisions. Source: Office of the Public Guardian (Scotland) (2017) You now consider decision making and mental capacity in two particularly difficult areas: child sexual exploitation and mental health.

3 Exceptional situations Mental capacity assessments of a child or young person often relate to routine decisions experienced by most children and young people in society. However, there are some situations where the capacity of a person is significantly and negatively affected by circumstances over which they may have very little control. You will now look at two such examples: child sexual exploitation, and mental illness.

3.1 Child sexual exploitation Child sexual exploitation is defined by the UK government as follows: Child sexual exploitation is a form of child abuse. It occurs where an individual or group takes advantage of an imbalance of power to coerce, manipulate or deceive a child or young person under the age of 18 into sexual activity (a) in exchange for something the victim needs or wants, and/or (b) for the financial advantage or increased status of the perpetrator or facilitator. The victim may have been sexually exploited even if the sexual activity appears consensual. (Department for Education, 2017, p. 5) Note that child sexual exploitation can involve anyone under the age of 18, even though 16- and 17-year-olds can legally consent to sex. Activity 5 Child sexual exploitation Allow about 20 minutes Watch the animation below, which was produced by The Children's Society. It is about Taylor, the subject of child sexual exploitation. Note your feelings at the end of the video. Taylor’s experiences TAYLOR My name is Taylor, and I'm 15. I live with my mum and dad, but I don't see them that much. They're always working. I've been having some problems at school. Other kids tease me. The teachers don't listen. They blame me for stupid stuff. Sometimes I feel lonely. I have no one to talk to about my problems. My girlfriend is probably the only one that cares for me. She understands what I'm going through. She makes me feel like a boss. I know that she loves me. The squad rate me now that I have a girlfriend. They pick me up from school. I feel safe with them. They call me their big man. It's always fun when we go out with the squad. We drink and hang out. My safety is guaranteed. My girlfriend texts me a lot. She always wants to know what I'm doing. The other day, she asked me to send her a selfie with no clothes on, but I didn't really want to. She said I hadn't paid her back for the trainers that she got me. She said I was ungrateful and that I had to have some fun with her. She told me that I should be a proper boyfriend. When I ignore her, she gets angry and usually argues with me at school. I feel so much pressure from her. She gets angry because I won't send her pictures. I feel so bad. She says that I have to pay her back for everything that she has ever bought me. She keeps telling me to send her selfies or videos. She's trying to rush me. I'm so confused. She says I'm not a man like the others. I sent her a selfie. She sent it to everyone. NARRATOR If anyone is putting you under pressure to do stuff you're not comfortable with, The Children's Society can help. [MUSIC PLAYING]

You might have felt angry with Taylor's girlfriend, who probably is the same age as Taylor. It seems that the young people in the Squad, with whom Taylor feels safe, are older than him and may or may not be a positive influence. Taylor believed that his girlfriend was someone he could trust, but she too may have been exploited or pressurised by others to persuade Taylor to provide a photo. Taylor's sense of self is likely to have been damaged by this incident and the circulation of the photo is now beyond his control. It could be a trigger for a deterioration in his mental health and his capacity to make safe decisions.

3.2 Mental capacity, mental health services and the law Sometimes children and young people demonstrate worrying or dangerous behaviour towards themselves or others. Usually support and treatment, can be provided with their cooperation and consent. Sometimes, however, they do not consent and family members and professionals have to make the difficult decision as to whether support and treatment should be given compulsorily. This will often involve admission to a residential care home or hospital from which the child or young person is not allowed to leave. It may also include the enforced administration of medication against their will. These decisions must be lawful and the least restrictive option available. Mental health legislation for detaining a person requires a qualified person specified in law to make a judgement that the person – be they a child, a young person or an adult – has a mental disorder which requires treatment and compulsory detention. Such treatment must be deemed to be in the best interests of the person and, in some cases, for the protection of others. The informal term used to describe this legal detention and treatment is ‘sectioned’, as it refers to a section of mental health law. Mental capacity legislation generally has a broader remit. It is used when a person may be a risk to themselves or others usually due to impaired mental capacity to make autonomous or age-appropriate decisions as might be the case for someone with severe learning disabilities, for example. Some people may need to have their liberty constrained, such as in a locked or restricted care home. They may not have a mental illness that is treatable. For children and young people under 16, those with parental responsibility are usually in a position to provide consent, unless a court determines otherwise. If it is necessary to deprive 16- or 17-year olds of their liberty, this should be done under mental capacity or mental health legislation. Such a decision requires a thorough knowledge of the law to ensure that any such detention and treatment are safe and lawful. Activity 6 Being sectioned for anorexia nervosa Allow about 15 minutes Watch this video from YouTube in which a young person recounts ‘being sectioned’ because of her anorexia nervosa. She addresses the view expressed by other young people suffering from anorexia that they want to be sectioned. However, having been sectioned herself, she explains that it is far from glamorous and not something she wants to repeat. In the text box below, note what this has taught you about the impact of being sectioned and how this might be confused with changes to mental capacity. In the video, the young person’s capacity to make decisions was clearly impaired at the relatively young age of 14 or 15 years. This seems to have been related to issues relating to eating, self-image and self-harm rather than a general inability to function independently, although this is not clear from the video. She was diagnosed as having a treatable mental illness, sectioned and detained in hospital where she received life-saving treatment, probably against her will, at least initially. This is an example of a temporary loss of mental capacity, where the law used to intervene in her best interests was mental health legislation, not mental capacity legislation.

This week’s quiz Check what you’ve learned this week by doing the end-of-week quiz. Open the quiz in a new window or tab then come back here when you’ve finished. Week 5 quiz Summary The main learning points from this week are that: The mental capacity of children and young people is a result of the interplay between their chronological age, their evolving maturity and the assumptions and responses of others. This means that their mental capacity always needs to be viewed in context. There are legally defined age limits for certain decisions and activities, which reflect societal assumptions about the capacity of children and young people. Parents have responsibilities and certain legal powers to act on behalf of their children. As children move through their teenage years, the power of parents to make decisions on behalf of a child is legally more negotiable, as evidenced by the Gillick case. At age 16, children achieve the legal status of presumed capacity and between 16 and 18, their decision-making powers are increasingly devolved to them. Abuse and exploitation can severely damage a child’s capacity. Assessment of a child who may be subject to abuse or exploitation should take these risks and consequences into account. Capacity can be impaired by temporary or fluctuating periods of mental illness. This can usually be treated, although it can be unpleasant and frightening for the child or young person. You should now be able to: describe how a child’s presumed innate incapacity to make important decisions evolves through childhood to capacity explain when and how parental decision making may be shared with or delegated to ‘competent’ children explain how the age of 16 is an important threshold for asserting the legal presumption of capacity describe some of the difficulties and ambiguities relating to capacity for young people aged 16 and 17 describe two examples of exceptional situations where the capacity of a child or young person may be especially compromised: child sexual exploitation and the interface with mental health services and law. Next week, you look at the issue of mental capacity in relation to people with learning disabilities. Week 6: Learning disabilities Introduction People of any age can have a learning disability. It may make it difficult for them to communicate their wishes and to be understood, which means that both mental capacity assessment and decision making on their behalf need to be done with particular care. This week you look at some of the features and needs of people with learning disabilities, and how they can be empowered to achieve a fulfilling life. By the end of this week you should be able to: describe what is meant by ‘learning disability’ explain the importance of communicating and listening in assessing the wishes and feelings of people with learning disabilities describe some of the decisions that people with learning disabilities often need support making describe some of the legal opportunities for intervention and support give examples of high-stakes situations which feature enforced intervention in the lives of people with learning disabilities, including the deprivation of liberty. 1 Capacity and people with learning disabilities Assessing the mental capacity of people with learning disabilities can be problematic due to some people’s pre-conceptions that all learning disabilities require most decisions to be taken by others. However, people with a learning disability, even some with profound difficulties, are able to express preferences. Additional observational and listening skills, as well as extra time, is likely to be required for the mental capacity assessor. Learning disability includes the presence of: a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with; a reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development. (Department of Health, 2001, p. 14) Activity 1 Definitions of learning disability Allow about 30 minutes 1. Watch the video below, which shows what ‘learning disability’ means to different people. It was produced by Mencap, a charity promoting awareness of and quality of life for people with a learning disability. At the end of the video, the viewer is asked, ‘What does learning disability mean to you?’ Write your own answer to this question in the text box below. What does learning disability mean? GIRL 1 To me, I think that having a learning disability just means that we may need extra support to do some everyday things. WOMAN 1 I can't understand everything you say. If you give me a big, long sentence, it's like I need it cut down smaller so that I can understand it. MAN 1 For me, a learning disability means that we have a different path than what we thought. But ultimately it makes you appreciate every aspect of your life and all the smaller things that are just worth so much more now. GIRL 2 Disabilities makes me feel I can't do anything around the area or like going out. MAN 2 For me, is full of difficulty to learn new things. MAN 3 It's really, really tough and demanding. But on a positive side, as a human being it's taught me patience and understanding. GIRL 2 What friends can do, they can go out and then they can have their life, too, with their friends and come home late. MAN 2 Maybe reading a recipe is very difficult, because I can't read very well. WOMAN 2 For me, a learning disability means slowing down and appreciating just the smallest things in life, the smallest achievements of what our little boy can do that maybe other people take for granted. WOMAN 3 For me, a learning disability meant that we looked to put a label on Simon for several years when he was younger, and failed to find the reason. And after that, we ceased looking. We just accepted Simon for what he was, and enjoyed what we had.

2. Mencap's mission is to ‘transform society’s attitudes to learning disability and improve the quality of life of people with a learning disability and their families’. Go to the Learning disability explained page on the Mencap website and note at least five things about learning disabilities that you didn’t know and that may have surprised you. Write them in the text box below. You may have been surprised at the wide range of conditions and syndromes that are included under the heading of learning disability. The complexity of the processes for diagnosis may also have been surprising. Many learning disability conditions have features and behaviours that are common to other conditions. Some are very specific, may be genetic and can be confirmed with a blood test. Others, such as global developmental delay, may emerge more slowly through infancy and early childhood and can be much harder to identify in younger children. A learning disability affects virtually all areas of a person’s life and has a substantial impact on their ability to function independently. A learning difficulty, while significant, does not have such a comprehensive impact. The Foundation for People with Learning Disabilities (2017) note that, ‘In general, a learning disability constitutes a condition which affects learning and intelligence across all areas of life, whereas a learning difficulty constitutes a condition which creates an obstacle to a specific form of learning, but does not affect the overall IQ of an individual. For example, Down’s syndrome is classed as a learning disability, whereas dyslexia is classed as a learning difficulty, in that it only affects an individual’s relationship to the processing of information, usually manifested in problems with reading, writing, and spelling.’ You may also have been surprised at the wide range of organisations and support services for people with learning disabilities. While there are many different types of conditions, a common feature is that people with learning disabilities and their carers continually face above average and often severe stress just to achieve a quality of life that many others take for granted. Learning disability is a life-long situation, requiring sustained and ongoing input. Foundation for people with learning disabilities (2017), ‘What is the difference between a learning disability and a learning difficulty?’, Mental Health Foundation, https://www.mentalhealth.org.uk/learning-disabilities/a-to-z/l/learning-disabilities (Accessed 14 January 2018).

1.1 Learning disabilities and communication Someone with a learning disability is more likely than other people to have impaired mental capacity for decision making in at least some areas of their lives. However, the legal and age-related presumption of capacity still applies. Assessors of mental capacity need to approach every case with an open mind, although it would be patronising and hurtful to parents and carers for assessors to start with exaggerated and overly-optimistic assumptions of mental capacity where clearly the person has profound mental impairment. Whatever the level of impairment, establishing the best method for communicating is essential for maximising the possibility of hearing the person’s views, both verbally (if possible) and non-verbally. Activity 2 Communication and learning disability Allow about 30 minutes 1. Watch the video below in which people with learning disabilities give their own advice on how to communicate better with them. The video is produced by CHANGE, a human rights organisation led by disabled people. Communicating with people who have learning disabilities [MUSIC PLAYING] TONY Talk to them. Talk their language. CRAIG Some people actually use BSL, so they might need interpreters. Other people, yeah, they can understand it, but it might take a little bit longer to process, as it does with me. JOANNE Braille, like if a person is blind. So like if it's in Braille, they can read it and communicate with somebody's who's blind by a different way. And with somebody who is deaf, sign language because then they can understand how to work with that person much better. JANE Don't be patronising. DAVID If they need more help, maybe draw pictures, if you can or try and explain things in a way that is usable for them. JANE They seem to care, instead of just seeing me as a person. JOANNE By talking to them, not mentioning speaking fast to them, spending time with them and getting to know them before they communicate. KENNETH Pretty much is exactly same as someone without, it just might take longer to understand things and longer trying to explain things. So that person needs to take time to listen to them. CRAIG Well, you've got to make time because she's speaking to a person with a learning disability. And if you want my views, you've got to go at my rate of speed. RACHEL Well, for me it's important that people are clear, really and that they sort of take the time to sort of make sure that I understand what they're saying because I have trouble with that because my hearing is not great or because they're using a term or phrase I'm not familiar with or whatever. But at the same time, I don't really want people to speak with me very much differently than they would someone else. Because some people when they find out you're disabled do get quite condescending, and that's not good. TONY Listen carefully. ask questions. And be more understanding and sympathetic. BEN Just take your time. Don't rush it. Just answer slowly questions, because if you rush the questions, they're not going to get in their head properly in time. It's like they're not going to listen in time to the question. ROBERT Speaking up to the doctors and saying I can't understand this. Can you talk to me more clearly so I can understand it? JANE Communicate to me, not you or my carer. Ask me what do I want. SHAUN People with learning disabilities, they are the best people to train because they are experts and they can train other people with learning disabilities and professionals without learning disabilities how to communicate, support, communicate, listening and attitudes, like a snowball effect. ROBERT They should be trained up on disability awareness so they can understand the person with disability and they know who they are talking to with a disability. JANE Nurses and doctors and the other higher people on top to realise we are more. We are people. We're not just numbers. We're not just things on paper. We are people. DAVID You see some people think that people with disabilities can not communicate. But we all can communicate in our own way. SHAUN Everybody we learn are different with reading and other way of communication skills. But everybody is different. And that's why professionals need to work with people with learning disabilities for higher, moderate, or low disability at what best way of communication. If they don't do that, they won't know. ROBERT Everybody with disabilities has got different needs. There's different cultures. KENNETH If you like to be treated with respect from your friend, then treat the person with disability you're working with or bumping into, treat them with respect, as well, and talk to them with respect. JANE It could be better. It could be improved. [MUSIC PLAYING]

2. Now look at one of the resources below and in the text box below, note the non-verbal ways in which communication may be enhanced. Mencap’s guide to Communicating with people with a learning disability Scope’s Resources to support children with communication impairments Clearly, communicating effectively with someone whose mental capacity you are assessing is essential. It is important to have a respectful, non-patronising and facilitating approach, to take time, to speak at a speed that matches the person’s ability to understand, and, above all, be prepared to use a range of different methods.

1.2 Cultural issues When assessing mental capacity, the cultural norms of the individual, their family and their community need to be taken into account. Some cultures have deeply held and culturally validated beliefs about the causes of developmental disabilities. This influences people’s expectations about autonomy for their family member and can affect their willingness to seek external help from the services available. Activity 3 Communication and cultural issues Allow about 20 minutes Read Developmental Disability Across Cultures on the Canadian Paediatrics website. This looks at cultural differences in attitudes towards developmental disabilities and ends with some practical tips for health practitioners. Think about how your own cultural beliefs, values, and assumptions influence how you approach the subject of learning disability with someone from a different cultural background. It would be hard to identify a cultural ‘norm’ in the UK against which other cultures can be compared. However, in some societies, people’s religious attitudes are affected by cultural as well as religious beliefs. Some cultural and ethnic groups believe that a developmental disability represents some kind of religious judgement on or personal punishment for parents. In such groups, secrecy and feelings of shame are likely to be more pronounced. Some cultures also hold firm beliefs about the community’s collective responsibility for care and people may be less willing to use westernised or individualised services. These are based on presumptions of medial/organic causation and place a high value on rights and individual autonomy. These issues are complex. When working with someone with learning disabilities from a different culture, you need to be as reflective and objective as possible about your own values, pre-conceptions and cultural assumptions. You will now look at aspects of decision making associated with learning disabilities.

2 Decisions, rights and responsibilities People with learning disabilities make decisions themselves, all the time. The issue of capacity is frequently implicit in how decisions are made. Sometimes it is addressed more explicitly or legally constituted. In this section you consider issues of consent, parents who have a learning disability, decision making and resources, and the legal safeguards in place for depriving someone who lacks mental capacity of their liberty.

2.1 Decisions that require consent People with learning disabilities are likely to have an impaired capacity to make independent decisions about themselves or others. When engaging with organisations in the community, a person with a learning disability may come up against barriers to their acceptance and their freedom to make a decision themselves. This lack of freedom can occur in matters ranging from buying a bottle of beer in a supermarket to employment, accommodation, travel, money and relationships. It can also apply to decisions on health, such as dental and medical procedures, contraceptives and abortion. There is a whole raft of matters that involve some liability or risk and for which informed consent is needed. The balancing of the rights of people with learning disabilities with the responsibilities of supporting agencies is particularly complex when people with learning disabilities have children of their own. Stewart and McIntyre (2017, p. 3) argue that parents with learning disabilities can and do become ‘good enough’ parents when appropriate supports are in place, but that they often have complex needs as a result of issues such as poverty, discrimination, depression and poor self-esteem. ‘Good enough’ parenting skills include: the ability to provide a safe home environment, adequate nutrition and positive and nurturing interactions being able to recognise and treat medical emergencies having a basic understanding of child development. Activity 4 Parents with a learning disability Allow about 2 minutes Think about why a careful assessment of capacity is especially important for parents with a learning disability. In the text box below, note down some of your ideas. If you are responsible for supporting the children of a person with learning disabilities, you need to be aware of their needs and ensure that clear representations for support are made with them and on their behalf. Child protection risks are undoubtedly greater in such situations and support for the family must take into account the parents’ strengths and weaknesses, their limitations, if any, and the potential for their mental capacity to fluctuate. All parents engage with teachers, nursery staff, their GP and other formal and informal agencies at some point during their children’s upbringing, and information on the development of children of people with learning disabilities should be safely and appropriately shared on a regular basis, if necessary. In order to minimise the risks of children being harmed and of stigmatisation of both the adults with learning disabilities and their children, a network of support should be built and sustained. This also ensures that protection agencies neither over-react or under-react to concerns.

2.2 Decision making and resources Support for people with learning disabilities after a mental capacity assessment may be constrained by a lack of resources. This may be due to: the macro health or otherwise of national and international economies political decisions on priorities in social care local authority priorities and inaccurate forecasting of need an unfortunate combination of circumstances where, for a period of time, the right resource or the money to pay for the right resource, is just not there. In such circumstances, a person's vulnerability, which is assessed as being directly related to their impaired mental capacity, is knowingly compromised. In the next activity you look at one such case, involving a young person called Matthew Garnett. Activity 5 Matthew Garnett believes he is in prison Allow about 15 minutes In 2016, Matthew Garnett was aged 16. He has autism, attention deficit hyperactivity disorder (ADHD) and learning disabilities. He has complex and profound needs and is behaviourally challenging. Read the BBC article below from February 2016. Then click through and listen to the audio [01:40 to 06:32], from the BBC Radio 4 programme ‘File on 4’, first broadcast on 13th September 2016. Campaign to help autistic boy, Matthew Garnett, who thinks he’s in prison If you were Matthew's mother or father, what would your primary concerns for the future be? How would you ensure that his capacity to make decisions is enabled? Matthew’s parents were very concerned that the longer he stayed in a psychiatric hospital, the worse his behaviour became and the less likely it was that he would be transferred to a more suitable placement. They are also likely to have worried that if he was sent home too soon or without support, their physical safety would be at risk, which would only serve to complicate things for him in the long run. They had clearly lobbied effectively on his behalf; the petition they set up attracted a huge number of signatures in support of a swift resolution of Matthew’s situation. However, they must have felt despondent. Eventually, in March 2017, after 18 months in a psychiatric hospital, Matthew and his parents were informed that he was at last being transferred to a specialist autism unit.

2.3 Deprivation of liberty It is not unusual for many people with learning disabilities to be deprived of their liberty, in that they are not free to choose where they live, who they see or where they go. In most democratic societies, such deprivations are exceptional and subject to substantial legal protections, including for people with learning disabilities. Bournewood psychiatric hospital is situated in Chertsey, Surry. HL, an autistic adult male with profound learning disabilities, was admitted voluntarily to the hospital in July 1997. However, due to his substantial lack of mental capacity, he was not in a position to provide consent to his admission. While he did not make subsequent attempts to leave, the medical staff believed it was in his best interests to remain in hospital. They did not allow his foster carers to visit him in case they discharged him home. In response, the foster carers commenced legal proceedings. This resulted in the legal judgement that HL had been illegally deprived of his liberty, even though HL himself had not attempted to leave; this became known as 'the Bournewood gap'. The judgement highlighted the situation for many compliant but incapacitated adults in care homes and hospitals, andare now an amendment of the Mental Capacity Act 2005 in England and Wales.. New provisions known as the ‘deprivation of liberty safeguards’ (DoLS) were incorporated and came into force in April 2009. Later clarification of the deprivation of liberty was provided by a case known in shorthand as Cheshire West (2014). This case established that assessing whether someone is deprived of their liberty comprises two central questions, referred to as the ‘acid test’: Is the person subject to continuous supervision and control? Is the person free to leave? These questions are not subject to whether the person is compliant with or objects to their situation, or to the placement’s relative normality, or to the reason for the particular placement. If the two elements of the acid test are judged to be true, then the person is deprived of their liberty.

2.4 Deprivation of liberty safeguards (DoLS) The aim of DoLS is: to ensure that adults who lack capacity to consent to being accommodated in a hospital or care home for the purpose of being given care and treatment are only deprived of liberty if it is considered to be in their best interests ... by establishing an administrative process for authorising a deprivation of liberty and a means to challenge any such deprivation.’ (Law Commission, 2017, p. 41) However, in 2017, the Law Commission published a report highlighting the over-complicated and highly bureaucratic real-world application of the DoLS, especially in the light of the Cheshire West ruling. At the time of writing (July 2017), recommendations are in place for reviewing the DoLS to make them more workable in practice. Suffice it to say here that whatever the outcome of these developments, regulatory supervision of this contentious area is still needed to ensure that the most vulnerable people are protected and only deprived of their liberty by fully regulated, transparent and accountable individuals and systems. Next, you will look at some areas where issues of decision making and capacity for people with learning disabilities may be said to be somewhat exceptional.

3 Exceptional situations The issue of mental capacity frequently arises for people with learning disabilities as their decision making skills are commonly compromised in some way. This tends to be permanent with little potential for development. However, learning disabled people should not be defined by their disabilities. They have a right to maximise their potential and engage fully in family, social and community life if they choose. To do this they need to be given opportunities to explore the options available and make a choice.

3.1 Marriage, hate and death Sometimes, the choices people with learning disabilities make bring them into conflict with social norms and strongly held beliefs. Activity 6 Marriage, hate and death Allow about 40 minutes In this activity, you consider three choices that may be made by people with a learning disability. After reviewing the material for each choice, note down anything that you feel strongly about. 1. Marriage Read Couples with learning disabilities face unfair wedding bar from The Guardian in 2014. 2. Disability hate crime Watch the short video below about a young person with Down's syndrome who has been subject to bullying. Bully for You [MUSIC PLAYING] [KEYBOARD TYPING] [LAUGHS] SANDRA Can't really remember how it all started. When I came home from hospital there were a few people that said I should have left him there, that it would have been better for me, certainly better for our Pete, better for all of us, all the family, all the friends. But they were only thinking what was best for me, for Pete. Better for all of us, you see, and better for Ben. They were sure of that. Much better for Ben-- everything could have been, should have been, better-- might well have been. Now I think about it, I was told by the doctors and nurses they could arrange a procedure that would have stopped it all before it started. But he were mine. He were my Ben, and I loved him, and that was that. I did love you, you know? I always have, always did, always will. You knew that, didn't you? BEN I know, Mum. I know. What do you mean, arrange a procedure? SANDRA Pete-- Pete-- he struggled. They were all right about that. He couldn't get his head around having a Down baby. Down babies, you see, Down kids, they don't look like you. They don't have your nose, your mouth, the dad's eyes-- Pete's eyes. Ben didn't have my nose or my mouth. And he didn't have Pete's eyes. Pete had amazing eyes, really blue-- Paul Newman blue. Do you know what I mean? If Ben could have had one thing of ours, I'd have been happy if he'd had those baby blues. That would have done for me. But he didn't have blue eyes. Didn't look like me. Didn't look like Pete. Now, we know, he just looked like Ben. But then he looked Down. They weren't right. They were wrong, bag of rubbish. I think Pete and I just stopped seeing eye to eye. Pete tried. I'm sure he tried. No, he did try. He did try. But you know, he just thought it was all his fault. And I thought it were all my fault. Weren't long before his blue eyes started seeing eye to eye with someone else. Ran off to Bridlington with a piano tuner's assistant. Something about her g-string, he said. BEN Bridlington? SANDRA Aye, Benjamin. You reap what you sow. You reap what you sow. When our Ben first started school-- sorry, when he were first able to participate in inclusive learning with additional specialist support, we had a few problems, issues, is what the school called them. BEN Issues? I don't do P.E because of my heart. [KEYBOARD TYPING] BEN I couldn't do lessons because I couldn't understand. I don't hold my tray at dinner. Bloody issues, all right. SANDRA Teachers said it was all very difficult. His time and resources were being taken up by our Ben. Parents just said our Ben was holding their kids back. BEN It was their bloody kids who were holding me. Putting me-- putting me arm up my back. The other kids say I'm a stupid spaz. But they kept tripping me up all the time. Every break, every dinner-- let's get the spaz. SANDRA You never think for one minute, despite everything, not one second, that it will happen to your child-- not one second. ALEXANDRA WEBSTER You never think it can happen to us, but it does. Christine Lakinski was in her fifties. She had learning and physical disabilities. Because her spine was bent, because she wore old clothes, because she didn't comb her hair, and because she smoked a lot, some people thought she looked like a bag lady. One day, Christine collapsed in a street near her home. A neighbour passing by thought this was really funny. [LAUGHTER OFF-SCREEN] ALEXANDRA WEBSTER She was dying, and he thought it was funny, real funny. He covered her in shaving foam-- funny. He took a piss on her-- that was really funny. So funny, he laughed as he did it-- that funny. He filmed himself pissing on her as she was dying. Said-- this will look great on YouTube. That was dead funny. And they said this wasn't a hate crime. We think he did this because of who Christine was, because she had disabilities. We think this was a disability hate crime. And that's not funny, not funny at all. SANDRA I want to Ben to-- I wanted to push him to be independent. I mean, Ben couldn't look like other kids, but he could be like them. He could do the stuff that they do. Social services, they agreed. That's the best treatment, they said. That's the best way-- no mollycoddling, no kid gloves, no cotton wool to be wrapped around our Ben. So when he got to secondary school, I made him walk there and back on his own. It were for the best, I kept telling myself. It was for the best. It were. But every day, every single day, I felt sick, sick to my stomach. And yeah, actually physically sick at times. BEN Me, too. SANDRA I knew they'd call him names, terrible names. BULLY VOICES (ECHOING) Flid. Spaz. Mongy. Joey. BEN They did those and worse. SANDRA Officer complained to the school. But those teachers just said that if they hadn't heard anything, as far as they were concerned it wasn't happening. And was I sure Ben wasn't making it up just to seek attention? BEN I don't need to seek attention. Attention always comes to seek me. SANDRA Oh, and sorry, Ms. Jackson, we can't be responsible for anything that doesn't actually happen on our premises. They called him names, made fun of him, humiliated him, bullied him. And just because I made him walk to school on his own. [SOBBING] My beautiful, precious baby, on his own. It were only half a mile away, but it was another world to me. BEN I was spat at, sworn at, punched, kicked, and shoved. They made me drink whiskey and smoke cigarettes. One girl took my trousers off. And that really made them laugh. I wasn't laughing. I was really, really scared. They fed me dog food and cat biscuits. SANDRA They were sick. BEN I was sick. Proper sick. And I really made them laugh. SANDRA You never think, for one minute, despite everything, not one second, that people can be that sick and nasty. TIMOTHY WOOTON You never think people can do that kind of thing, but they can. David Askew was 64 and he had learning disabilities. People said he wouldn't hurt a fly. But some people wanted to hurt him. He didn't hate anyone. But some people hated him. For over 10 years, groups of young people made his life hell. [OFF-SCREEN BULLIES LAUGHING] TIMOTHY WOOTON They called him names. [INAUDIBLE] and took his money. Some people complained to the police. But nothing ever happened. So they stopped complaining. One evening, [INAUDIBLE] people broke into his garden. [INAUDIBLE] David got so angry that he collapsed and he died. 10 years of abuse killed him. 10 years of hate killed him. SANDRA Then it all started to hit home, literally, like. Stones at the windows, name calling up to his bedroom, knock and run, exit the door. I'd run out and shout out as loud as I could, but I never saw or caught anyone. They were all too quick, wearing hats and scarves and like. SANDRA (ON TELEPHONE) Hello? I just wondered if you could send someone round. Well, it's my lad, you see. He's getting picked on. SANDRA But I'd had enough. And I called the police. SANDRA (ON TELEPHONE) Can't you just send someone just to talk to us? SANDRA Didn't know what else to do-- nowhere else to go. SANDRA (ON TELEPHONE) Yeah. Sorry, I don't usually do things like this. But I don't know what else to do. SANDRA Neighbours did what neighbours do, you know, keep themselves to themselves. They don't say anything about Ben. But you know, you can feel it. You can see that they sense Ben is different, not one of us. Then they give you one of those "oh, it must be so hard for you" looks, and then they scuttle off. Not thinking Ben exists, I suppose. BEN Oh, but I do exist. Yep, I exist. SANDRA So about three days later, I think it were, the police sent round this police lady. She was in the area anyway, so I didn't feel so bad that she made a trip out special like. But she didn't need to listen to me too much as she knew what it all were. POLICE OFFICER Anti-social behaviour. SANDRA --she said. POLICE OFFICER There's a lot of it about. SANDRA The young kids, you see, especially around areas like the one I live in are no go zone at weekends, apparently. Well, if it scares the police, just think what it does to us. Anyway, she took a few notes and our details. And she'd said, other than pop by a few times to keep an eye on us, it wasn't really a huge amount she could do. But as she said-- POLICE OFFICER No one's been murdered, love. SANDRA Fair enough. [BACKGROUND CONVERSATION] BEN As I got older, they bullied me more and more. So I told the police I was sick of being bullied. POLICE OFFICER But you're too old to be bullied, OK? SANDRA Bullying-- that's what Ben calls it. He's been threatened, punched, kicked. He's been forced to eat dog food. He's had his clothes taken off. He's been made to play with himself. To us, that's threatening and intimidating behaviour. To us, that's mugging and theft. To us, that's assault, an actual bodily harm. To us, that's torture. To us, that's sexual assault. But to them, it's bullying, same as he's had all his life. To Ben, their bullies, only bigger and worse and meaner. BEN It did get worse and meaner, and I told them to stop hurting me. And [INAUDIBLE] they said-- BULLY VOICES (ECHOING) We're going to burn your house down, because you're a stupid spaz who should have been put down at birth just like the dog you are. The dog I am is worse than being an animal. People like animals. SANDRA You never think for one minute, despite everything, not one second, that people can treat people like animals-- not one second. RUTH PAGE Frankie Hardwick was 18 and had severe learning disabilities. For 11 years, Frankie and her Mum had been under siege from a gang of local young people. They threw stones at her window. They called Frankie a disabled bitch. "You disabled bitch!" They complained all the time to the police. The police didn't see any hate. They just saw anti-social behaviour. [INAUDIBLE]. The police couldn't help and Frankie's Mum couldn't cope. And so she and Frankie got into their car and then they pulled into a [INAUDIBLE]. Frankie's Mum set fire to their car, killing herself and Frankie. The bodies were so badly burned, you couldn't even tell who they were. The police needed to use DNA tests to find out who the bodies were. The bodies were Frankie and her Mum. The fire might have killed them, but the hate they suffered burned just as deep. MUM After he left school, it went on and on. Time after time I'd call the police, social services, local counsellors, all sorts, any sorts, anyone. They said keep a diary. We did. No one read it. Ben likes Big Brother, so he said, let's keep a video diary. BEN So we did. MUM We did. [BEEP] [CLEARING THROAT] SANDRA Whatever friends, family can still be bothered with us said why don't you just move? Why don't you just pack up? Oh, yes, easy that isn't it, yeah? With no friends, no-- no-- no-- oh. Start again. No income, no savings, no partners-- what I mean. I mean, that's just easy, isn't it? Yep? Just pack up and go. No, this home, for all its faults, its memories, its trouble-- no, I mean, this home-- well, it's all we've got. If we give up that, we give up everything. Huh. Just pack up and pack it in and go. Oh. Don't know whether I've got that. [VIDEO BEEPING] [PAPER RUSTLING] SANDRA I wasn't having that, so I went to the other extreme. What did the local paper call it-- my siege mentality. I was on tablets-- so frightened. Dr. Betty was nice and tried to understand. But all she could really do was give me tablets to help me nerves, calm me down, help me sleep. I was just so wired. I just used to go "shouty crackers," as Ben called it, and screamed from the doorstep. BEN She went shouty crackers. You should have heard her. Surprised you didn't, actually. [BEEP] SANDRA Ben going missing didn't help. [KEYBOARD TYPING] BEN I was with my friends. I was living on the front line in the community. [BEEP] SOCIAL WORKER And Sandra, as your social worker, I think it's important that you fully understand the outcomes of the discussion-- SANDRA I was frantic. Social services told me that, as an adult, Ben could make his own decisions. And he'd decided, having made an informed choice, to move in with friends. He had, had he? Oh, yes. Not only that, he'd also declined any further intervention or support, and therefore, his case was closed, closed. Yes. Case closed. He is now happily integrated into the community. But he hasn't got any friends. Who are these friends? I was being in denial. That many, many parents have felt they can't let go, apparently. He was an independent adult, empowered to make his own choices. Choices, choices-- whose flaming choices? What about me? What about his safety? Well, I must learn to look beyond a perceived threat and see the opportunity, see it as an opportunity. So all these threats to burn our house down, they were threats at all. They were opportunities. SOCIAL WORKER See it as an opportunity. SANDRA Oh, give me strength. Where's my tablets? [BEEP] BEN Steve and Jen found me in town. Mum had one of her do's. So I just wanted out. They said I could come to the house if I liked-- as long as I clean up and that. they got angry if there's anything wrong. I gave them my money. [INAUDIBLE] I was their pet. Forgive me, I don't [INAUDIBLE]. I ate my food out of a dog bowl. [INAUDIBLE] [BARKING] But I knew I'd be OK, because people liked their animals and would love their pets. Don't they? SANDRA You never think for one minute, despite everything, not one second, that people can torture people, not one second. MATTHEW FOWLER We never think people can torture people, but they can. MUJAHID SHAH You all right, man? MATTHEW FOWLER Listen to this. Sean Miles was 37. He had autism. He was a kind and gentle man. He thought that anyone who talked to him was his friend. But they weren't. Three nasty people one night tortured and murdered him because they thought he was a paedophile. He wasn't. He had learning disabilities, and just acted differently. He acted differently, so they picked on him. They beat him with a golf club and fractured his ribs. [SOUND OF GOLF CLUB HITTING A PERSON] MATTHEW FOWLER They stuck a knife in his head. They stripped him naked and threw him into the River Thames. When he tried to get out of the river, they poked him with a stick to stop him. Sean drowned that night. He died because he had a learning disability. He died because they hated him. MUJAHID SHAH They hated him because he was different. MATTHEW FOWLER He was different. But Sean Miles was better than them, and now he's dead. SANDRA You never think for one minute, despite everything, not one second, that people can kill people just because they have a disability-- not one second. BEN And now there's one person to add to that list-- me. And that's me, dead. SANDRA And that's my Ben, dead. The coroner said he had 136 cigarette burns across his body. He had the word spaz cut into his forehead. They found traces of furniture polish, vodka, and dogshit in his stomach. ALEXANDRA WEBSTER A victim of hatred and prejudice. MATTHEW FOWLER A victim of intolerance and bigotry. RUTH PAGE A victim of independence and choice. TIMOTHY WOOTON A victim. MUJAHID SHAH A dead victim. ALEXANDRA WEBSTER A victim of-- BEN Bullying. SANDRA A victim, a dead victim. BEN Because anti social behavior MUM, that's all. Night, mum. SANDRA Night night, Ben. I love you. BEN Love you. [KEYBOARD TYPING] SANDRA Hatred, prejudice, intolerance, fear-- why do they exist in our society when our Ben doesn't? He's dead now. He's gone. He's out of it. He can't hear the names, can't feel the kicks, can't feel the cigarette ends, can't eat anymore dog shit. He's gone. I'm not sure I want to stick around, either. I'm too numb to feel, too sick to think. It's all I can do to grieve. Why didn't they listen? Why didn't they hear him when he was alive? We were quiet voices then, but they should have listened louder. They should have listened. It took our Ben's death for them to sit up and listen. Why couldn't they learn the lessons from his life? Why wait until it was too late? Why wait until he died? Our Ben had learning difficulties. He had Down syndrome. That was the reason he found it difficult to learn. What was theirs? What'll be yours?

3. Assisted dying Read the article Assisted dying bill overwhelmingly rejected by MPs from 2015. It remains illegal in the UK to assist in someone’s suicide.Can a young man with a learning disability have capacity to make such a decision Clearly, it was an unambiguous and carefully considered decision by Sarah to marry Daniel. The decision was not seen as so clear-cut by the local authority’s mental capacity assessor. Initially, Sarah was deemed not to have the capacity to enter into a marriage where both parties had severe learning disabilities. Sarah’s mother believes that Sarah ‘had the right to fall in love like anyone else’. The local authority was concerned about the risk of abuse and exploitation. These are difficult decisions. Some might call what happened to Ben ‘bullying’. However, it seems more serious than that and more like a series of assaults. It seems that Ben is attending a mainstream school, with support for his additional learning needs. This choice by Ben and his mother has brought him into contact with the ‘bullies’. Would it have been better for him to have chosen to attend a special school? These are the kinds of dilemmas faced by parents and carers of young people with learning disabilities. Most people would say that it is for the bullies to be punished and not Ben. However, some parents may not want to take the risk of their child being bullied. That, too, would be their choice. Assisted suicide is controversial and remains illegal in the UK. However, if it were legalised, it is highly debatable as to whether learning disabled people with a terminal illness should be precluded. Should it be based on an assessment of their mental capacity to choose the time and manner of their death? Opponents of assisted suicide may argue that choosing suicide is de facto evidence of incapacity in and of itself, for anyone, not just for a person with a learning disability.

3.2 Extreme measures In a democratic society, for the state to forcibly and permanently take away a person’s capacity to reproduce is by any measure an extreme act, and potentially an intrusion on their freedom and human rights. These are complex matters, and are most usually only addressed through the courts. In the next activity you consider two cases of forced sterilisation. Activity 7 Forced sterilisation Allow about 20 minutes Read the two short newspaper articles from the Guardian below about forced sterilisation. Judge authorises sterilisation of mother-of-six with learning disabilities Man with learning difficulties to be sterilised in unprecedented court ruling Do you think that forced sterilisation is ever acceptable, even when attempts to manage the situation through support and supervision have failed? The issue of forced sterilisation strikes at the heart of mental capacity. The judges had to make extremely difficult judgements in both these cases. The judgement in the first hinged on the high risk to the life of the woman if she got pregnant again. In the second, the judgement was made in the best interests of the man and in light of the importance of his relationship to his stability and well-being. The point is made that these were exceptional cases.

This week’s quiz Check what you’ve learned this week by doing the end-of-week quiz. Open the quiz in a new window or tab then come back here when you’ve finished. Week 6 quiz Summary The key learning points of this week are: Having a learning disability can involve a combination of many different problems, behaviours and difficulties. The nature of learning disabilities means that it is more likely that the person’s capacity to make safe decisions for themselves or for others is impaired. People with learning disabilities often have capacity for making decisions in many areas of their lives. When supporting their decision making or assessing capacity, great care should be taken to listen to and communicate with the person with the learning disability. Extra time and extra visits should be planned: a reliable decision cannot be made after just one conversation. When people with learning disabilities exercise choice in some aspects of their lives, they may come into conflict with the prejudices and anxieties of others. It is therefore important to work with the person and their parents or carers and the professionals in their lives, to ensure that their ‘best interests’ can be honestly determined and actually delivered. You should now be able to: describe what is meant by ‘learning disability’ explain the importance of communicating and listening in assessing the wishes and feelings of people with learning disabilities describe some of the decisions that people with learning disabilities often need support making describe some of the legal opportunities for intervention and support give examples of high-stakes situations which feature enforced intervention in the lives of people with learning disabilities, including the deprivation of liberty. Further reading Deprivation of Liberty Safeguards (DoLS) at a glance Mental Capacity and Deprivation of Liberty (Law Commission’s reform proposals 2017) For more on marriage and people with learning disabilities: see the UK government’s online guidance about Forced marriage, which also applies to people who cannot give consent. For more on disability hate crime, see the Crown Prosecution Service’'s prosecuting policy on disability hate crime. For more on assisted suicide, see the briefing paper Assisted suicide and disabled people, produced by the DAA, the international disability and human rights network. For more on forced sterilisation, see this article about the sterilisation of men with learning disabilities. Week 7: Older people Introduction Most older people have a lifetime of experience in making decisions for themselves and others, as parents, carers, employees and citizens. To be assessed in later life as no longer having the mental capacity to function in this way is likely to be disorientating and distressing. This week you consider the mental capacity of older people. By the end of this week you should be able to: explain some of the attitudes towards and expectations of older people in UK society explain how assessing mental capacity often involves balancing risk and safety against choice and wellbeing define what it means to be a ‘person’ describe three common issues for older people that are linked to mental capacity: driving vehicles, daily living routines and living alone outline three mechanisms where decision making is delegated or wholly assumed by others: power of attorney, advanced decisions and the Court of Protection. 1 Getting old You will begin this week by thinking about some of the general issues related to getting old: popular assumptions about old age, risk and well-being, and life in residential care for people with dementia.

There are deeply rooted cultural assumptions in all societies about the perils and the opportunities of growing old. Old age can be positively associated with experience, perspective and wisdom. It can equally be linked with decay, declining mental agility, decreasing cultural relevance and dwindling social expectations of the need for the views of older people to be taken into account. Unlike children who start with very little mental capacity and usually acquire more through their childhood, it tends to be assumed that older people will lose, not gain, mental capacity as they get older. The risks of inadvertently reinforcing negative stereotypes of older people lacking mental capacity are considerable. The universal reality is that the older a person is, the more likely they are to have physical health problems and the less likely they are to be able to undertake the physical activities that they did when young. However, declining physical health should not be conflated with declining mental capacity. The two issues must be examined separately, even though they interact. This is especially the case for the range of conditions known by the generic term ‘dementia’. Dementia is particularly relevant to mental capacity.

1.1 Getting old: what do we expect? Poetry is a way of expressing subtle and sometimes complex ideas that are less easy to grasp when articulated in other ways. For example, the poem in Box 1, ‘When I am old’ by Margaret Sangster, was written in the nineteenth century and looks forward into old age. It touchingly captures the likely mixture of longing and regret. It also seems to anticipate and perhaps accept the inevitability of the passing of the years, hoping for clarity and wisdom in older age. Box 1 When I am old When I am old and drenched in worlds of sadness, And wear a lacy cap upon my head; When, looking past the future’s singing gladness, I linger, wistful, in the years long dead. When I am old, and young folk all about me, Speak softly of religion, when they speak, When parties are a grand success without me; And when my laugh is fluttering and weak. Will I then be content to raise my glances, Serenely to the cloud-entangled sky? And will I be content to watch at dances, Without a heartbreak, as the hours pass by? Or when I see young lovers fingers twine, Will I remember, dear, your lips on mine? Margaret Elizabeth Sangster (1838–1912) Activity 1 Poems of old age Allow about 15 minutes Spend a few minutes searching online for poems about old age. You will find that this generates a large amount of material. Read at least twoof these poems and note down some of the insights they give you about older people. Poems about old age often incorporate elements of regret, along with a sense of things settling and resolving over time. Frequently there is humour about the loss of faculties such as memory and mobility, along with relief at being far less concerned by the value judgements of others and an acceptance of at last being comfortable with who they are. Some poems reflect on the youth of the day, asking them to appreciate that one day they too will be in the position of looking back, musing on their own lives. But this is usually with an acknowledgment that the innocence and privilege of youth make it less likely that they will look that far ahead.

1.2 Balancing risk with well-being Graham (2016) argues that mental capacity legislation is increasingly used for its safeguarding measures, ‘inasmuch that people are often assessed in relation to health and social care outcomes when elements of risk to the person are deemed to be present … the ability to make a decision is a central tenet to well-being in older adults’ (Graham, 2016, p. 152). This suggests that, in the care of older people who may lack mental capacity, safety is commonly prioritised over personal preferences and choices, especially when they want to make what may seem to be an unwise decision. The person assessing the capacity of the older person to make a decision must make sure that disagreeing with the person’s choice is not interpreted as meaning that the person lacks capacity. A balance must be struck between what may be in a person’s best interests, especially in terms of their safety, and allowing the person to make their own decision. One important part of undertaking a capacity assessment of an older person is to understand the narrative about how they have lived their lives. The unique ‘story’ for each person contains clues that give both context to their current choices and evidence of previous decision making. It can reveal what they think contributed to their well-being in the past. Mental capacity legislation incorporates and celebrates these person-centred approaches, but in the daily realities of providing care, especially when a person’s mental capacity is generally poor or fluctuates (as is commonly the case with dementia), sometimes the ‘person’ themselves can become lost. This is a particular risk in residential care, where the many organisational and administrative tasks demanded of staff can divert attention away from person-centred relationships. You see a glimpse of this in the next activity. Activity 2 Capacity in residential dementia care Allow about 30 minutes Watch the video below which is a clip from the 2009 BBC series Can Gerry Robinson Fix Dementia Care Homes? In the video, Gerry Robinson – a management guru with a wealth of business experience – visits a residential care home for older people with dementia in Torquay. Gerry attempts to engage with the residents but is alarmed to find that the range of activities in the home is very limited and apparently driven more by institutional routines than the expressed choices of the residents. The lack of activity in residential care for older people INTERVIEWER The first time I was looking at was Woodland House in Torquay. It is a dimension nursing home for 24 residents. It's privately owned, funded mostly by the local authority. It's typical of the kind of home perhaps, half of us will end up in. Are you interested in the birds? MAN There's some there. INTERVIEWER Oh, yeah. CAREGIVER Doris, head this way, my love. INTERVIEWER When I got to Woodlands, the residents had just had breakfast. And what struck me straight away was that people were just sitting there and not doing anything. Are you all right? What's your name? This lady is very troubled. That's better. Were you a soldier? LES No. INTERVIEWER What were you? LES I might have flew a Spitfire. INTERVIEWER Did you? LES Yeah. And shot six down. INTERVIEWER Did you? LES I did. You see, I was very proud of it. INTERVIEWER Was that frightening, being a part of a Spitfire? LES No. It was exhilarating. INTERVIEWER Was it? LES Yes. INTERVIEWER So the home had one of our country's Spitfire heroes amongst them. And although Les's life is now spent in the corner of this lounge, he still remembered his extraordinary past. And alongside Les were doctors, caterers, company directors-- all sorts of people with interesting pasts. But it felt as though nothing that had happened in their lives mattered anymore. Here they were like broken vessels sitting in this room with absolutely nothing to do. Thelma, What did you do when you were younger? What was your job? THELMA I can't tell you. INTERVIEWER No? THELMA No, I can't. INTERVIEWER Can you remember what you used to do at all when you were a young girl? Do you remember? THELMA Yeah. I can remember all right. INTERVIEWER What did you do? THELMA Oh dear. I don't tell lies. I didn't tell lies. INTERVIEWER No. I've just been talking to Thelma, who obviously I'm not getting very much from. Are you wanting through here? There we go. Do you-- do you ever-- do you have a sense of her personal history at all? CAREGIVER No, I don't. I know she used to-- actually, her husband told me she used to cook. But that's all I know really about Thelma. INTERVIEWER Do you know has there ever been a time where you thought if I knew a a little bit more it would be helpful or does that not seem-- CAREGIVER I suppose everything-- every aspect like-- well, yes, I suppose it would be. I suppose the more you know, the better really.

List the ways in which it might be possible to engage more successfully with the residents in this home. Try to think of ways of ensuring that any decisions are based on the best possible opportunity for residents to express their views and wishes. Make notes in the box below. Now watch the video below, another clip from the same series, which gives a more positive picture. Residential care for older people: some positive experiences. INTERVIEWER There was one resident at Woodland who stood out for me. Daisy seemed to have an unusually strong air of well-being. Don, do you come in every day? DON I come here from 2:00 till 8:00. DAISY Ah, help. DON And I don't let nothing stand in the way of those hours when I want to come and see her. It don't matter who it is. DAISY Help. DON I've told everybody here. The ones that come to mind-- my house doctor with NHS, whoever they are. It's no good you coming to us in those hours that I'm coming up here, because I won't be seeing you. And I'm seeing Daisy, and that's it. INTERVIEWER And what gives you the strength to do that? DON Pardon? INTERVIEWER What gives you the strength to do that? DON Because I love the girl. That's why. DAISY You love me. DON Yes. I do love her very much, and I can't see no point in standing up in front of the vicar, being the big guy and saying-- DAISY The vicar. DON --till death us do part and all that. And then the next minute you're gone and knocking about with someone else. DAISY Help. DON I don't believe in that rubbish because she's a lovely person. If I'd have let these people-- or whoever, wherever she went-- put her in the corner and forget about her and say, oh, she's lost her marbles and all that [INAUDIBLE], she wouldn't be as bright as she is today. Yet she does answer and-- don't you, Daisy? DAISY Pardon? DON You do answer me, don't you? DAISY Oh yes. DON See? DAISY Yes. Help. DON What's your name, then? DAISY Pardon? DON Is your name Daisy? DAISY Daisy. INTERVIEWER Daisy, are you happy? DAISY Am I happy? INTERVIEWER Yes. DAISY Yes. INTERVIEWER Through her husband Don, Daisy was getting that one thing that so many people in dementia care homes don't get, that meaningful one-to-one contact. And unquestionably, this was keeping her as with it and connected as she was. DAISY (SINGING) Happiness, happiness, la, la, la, that you possess. DON Who sang that then? DAISY [VOCALISING] Just a little happiness. INTERVIEWER Quite simply, the system needed to be Don. DAISY Happiness. DON Yes. All right, dear. INTERVIEWER I had been looking throughout the industry to see if I could find anywhere that was providing care that really managed to make residents feel alive and happy. I'd heard about a home in Warwickshire that tried to do exactly that. Merevale House is a residential home for 35 people with dementia. Merevale was partly the inspiration of David Sheard, a care consultant. It was brilliant. These residents were really living in their home and actually helping to run it. DAVID SHEARD Everybody working here sees themselves as an activity worker-- whether they are in the kitchen, whether they are in the office, whoever-- and that that's their main focus of the day is to connect to people, to occupy people. And yet, all the tasks will be dealt. You know, people will eat. People will be dressed. People will have help with personal care. But what seems to be so hard is to get across in this care sector how you unhook from the task. And what seems to happen is managers seem to need to hang on to that task. Because if that's their safety blanket to run the place, and yet they're working with people who are not seeking order, whose lives are in a different order to ours, and that, therefore, surely demands that we change our order. And yet, somehow people, as you say, want to hold onto to theirs. INTERVIEWER And the great thing is it's not about the money. Merevale doesn't cost more to run than most residential homes. And yet, that involvement of people in running their own homes not only makes good emotional sense, but it makes good business sense too. This home is rated as excellent, and so it's always full. The staff are well-treated and they feel part of it, so recruitment costs and training costs are low. On every level, they've created a place where people want to be.

How might the care arrangements in this home make it easier to make a more accurate assessment of the capacity of the older people compared to those in the first video? Make notes in the box below. In the first video, the residents have very little to occupy themselves and are not very engaged with either the staff or each other. Gerry Robinson hinted that this might be related to the institutional need to prioritise safety above the quality of people’s lives. The staff may also not be aware of the variety and richness of the backgrounds of the residents, which makes it even harder for the staff to engage with them. The exception seems to be Daisy, shown at the beginning of the second video. Daisy’s husband Don maintains substantial daily care and commitment, keeping her connected and contented. The residential home in Warwickshire, in contrast to the first home, showed staff and residents collaborating to run the home together, providing structure and ‘order’ reflecting the needs and rhythms of the residents, rather than of the managers and staff. This makes good business sense as well as emotional sense, creating a place where residents and staff want to be. In the next section, you will consider more particularly issues of decision making and older people.

2 Decision making and older people This section begins with a discussion of personhood, the starting point for assessing the needs of someone whose mental capacity is a cause of concern. You then look at three situations where the capacity of an older person is commonly brought into question: driving, daily-living routines and living alone.

2.1 The concept of personhood The concept of personhood relates to everyone, including children, people with learning disabilities and older people. Older people are likely to have lived their lives with a relatively intact sense of themselves as individual people, but the process of ageing and dementia in particular can put that sense of self at risk. More importantly it can change other people’s perceptions of them. It is important therefore to think about the personhood of whoever needs help making a decision. You will learn what personhood is in a minute. A ‘person’ is someone who is worthy of our moral consideration in our dealings with them; this includes every human being. Personhood, however, is a central element for debate in moral philosophy. Activity 3 Personhood Allow about 20 minutes Watch the video below about personhood. Would you ever consider someone to have greatly diminished personhood or not to be a person at all? What is personhood? This is especially relevant in relation to older people, who have lived long and varied lives and whose personhood has never before been in question. Assessing their mental capacity often brings into focus how much their personhood is accepted by others. Write your thoughts in the text box. It is useful to reflect on and make a conscious choice about the nature of each individual’s ‘personhood’ and how this is defined, even though this may seem a rather difficult or even an alarming prospect. You should never assume that older people with impaired capacity have surrendered any of their personhood. Mental capacity legislation clearly indicates that every assessment must be founded on the basis that every individual is presumed to have capacity. Any subsequent deterioration can only be addressed through the courts, for example where someone is in a persistent vegetative state with an irreversible loss of brain function, and where a court may legally authorise a medical team to withdraw treatment, leading to the death of that person.

2.2 Three common decisions Some decisions commonly emerge when an older person’s capacity is in question. You now look at three of them: driving, daily living routines and living alone. Activity 4 Driving and older people Allow about 20 minutes Watch the video below about aged drivers. How do you feel about drivers who are elderly? Driving and older people It would only be natural for anyone who uses public roads to be concerned about drivers aged 100 and over. Safety issues might be raised in terms of eyesight, hearing, mobility, undiagnosed or poorly managed medical conditions, short-term memory, poor awareness of the traffic conditions and personal limitations. The list of risk factors is extensive. However, the drivers in the video clearly have no such concerns and appear to show a reasonable capacity to make the decision as to whether they can drive safely. For more on this, look at the Age Concern webpage Drivers over 70. In the UK, when a person reaches the age of 70 they have to reapply for their licence every three years. There’s no test or medical examination but the driver does have to make a medical declaration. If this raises concerns, the Driver and Vehicle Licensing Agency (DVLA) make further investigations. Sometimes medical practitioners report drivers about whom they are concerned. Activity 5 Daily living routines Allow about 15 minutes Visit Eldercare at Home: Problems of Daily Living on the HealthinAging site in the USA. Read about at least two aspects of personal care under the heading ‘What you can do to help’. Then try to think of some older people who have difficulties with some daily-living tasks. List five examples of when a particularly careful assessment of an older person’s mental capacity would be needed. It is important for older people to have some sense of control over their daily living routines, wherever possible. For people with physical or mental difficulties, this control will be limited. Assessments should be made, reviewed and updated continuously. The review process is often time-consuming, but it is part of the reality of effective mental capacity assessment and empowerment that the detail is important. Many older people live alone. This is usually in a familiar home that feels comfortable and private. The prospect of surrendering their independence to go into assisted-living or residential care can be unwelcome and is often vigorously resisted. Some form of supported accommodation usually needs to be considered when the older person shows signs of forgetfulness, confusion, the early stages of dementia, decreasing standards of personal hygiene, changes in personality or conditions that are hard to self-manage. This decision will usually be considered after a prolonged period of providing support within the home and at a point when such support could no longer guarantee the person’s safety – and when the family was at its limit in the support it could provide. Often a search for alternative accommodation is preceded by a number of falls, hospital admissions and episodes of wandering. For the older person, moving into residential care is probably one of the most difficult decisions they have ever had to make. It is at such times that an especially careful assessment of mental capacity is required. Activity 6 Living alone: Catherine Allow about 20 minutes Imagine that you have a close relative, Catherine, aged 89. She lives alone and has been diagnosed with dementia. You are concerned that she is not coping and is increasingly at risk. You don’t know Catherine very well and don’t see her very often, but as her only surviving relative you feel some responsibility for her. Yesterday Catherine’s GP telephoned you and asked to talk with you about the possibility of residential care for Catherine. You have made an appointment to meet the GP but before then, you decide to look on the internet for information about dementia care assessment and residential care in your local area, so that you are better informed in advance of your discussion with the GP. Search online for ‘dementia assessment’ in your local authority area, county, borough, or city. Explore the search results with Catherine in mind. Look for information about how an accurate appraisal of her situation might be made. If Catherine were to move into residential care, where might that be in the area you have researched and how much would it cost? You will have found that a great deal of information, from national organisations, local authorities and local groups. You probably realised that for Catherine, a quick online search is likely to be the beginning of a very long journey. Anyone seeking to help her would need considerable help and advice from a wide range of social care, medial, and financial sources. It is a complicated process when attempting to find the right resources as every person is unique. Next, you'll consider more complex decisions that have serious implications for older people and their families.

3 Exceptional situations Every situation is important when issues of mental capacity are at stake. Most potentially difficult situations are resolved satisfactorily between family members, professionals and other people who care about the person whose mental capacity is in doubt. However, the presumption of cooperation, competence to act on behalf of another person and goodwill cannot always be taken for granted. You will now look at some of the formal legal processes that can be invoked as safeguards for protecting a person’s best interests.

3.1 Power of attorney While a person has mental capacity, they can give someone they trust the legal authority to act on their behalf should they lose their capacity in the future. This process is known as giving power of attorney. There are various forms of these delegated powers, divided in most UK nations into financial power of attorney and welfare power of attorney. Part 2 of the Adults with Incapacity (Scotland) Act 2000 provides for, essentially, the same anticipatory mechanism. The term refers to a power of legal representation conferred by one person on another by means of a contract of mandate or agency. Future authority, in the event of a subsequent loss of capacity, to act on the individual’s behalf, in both welfare and financial decisions, can be delegated to one or more trustworthy people. If someone has lost mental capacity but has not arranged for any power of attorney, an application may be made to the Office of the Public Guardian to be appointed as a ‘deputy’ to act on that person’s behalf. This might be a friend or relative, a solicitor, a representative of a local authority, or any other person acceptable to the application. Activity 7 Catherine: the legal authority to act on her behalf Allow about 30 minutes Think once again about Catherine, the lady with dementia from Activity 6. Imagine that you have had the interview with her GP and it is clear that the concerns about Catherine’s care and future welfare are well-founded. The GP has suggested that you explore the options of acquiring legal authority for Catherine, for both her financial and welfare needs. The GP will arrange a formal assessment of her dementia, but has suggested that you take legal advice in order to assist Catherine. Rather reluctantly, because you don’t know Catherine that well, you agree, and you subsequently arrange an appointment with a local solicitor. 1. Search online for ‘power of attorney’. It will be relevant to include your nation in the search term, such as ‘power of attorney England’ or ‘power of attorney Scotland’, because the terminology and legislation is different. What are the implications for Catherine if she agreed to give you power of attorney? What are the implications if Catherine is deemed not to have capacity and you want to be appointed? Write some notes in the box below. 2. Now, note down some questions you would want to ask the solicitor about the implications for you if Catherine agreed to give you power of attorney or, if she were assessed as not having capacity to give power of attorney, if you applied to be appointed as her deputy (England and Wales), or under a Guardianship Order (Scotland), or Controllership (Northern Ireland), to act on her behalf. There are detailed and explicit legal steps to go through in order to be granted a power of attorney. This is because giving someone else the authority to deal with your affairs and make decisions on your behalf is a major change and should not be taken lightly. There are real risks of some people exerting undue influence upon others for financial gain or emotional control, and these risks should be minimised through full and transparent legal scrutiny.

3.2 Advance decisions When a person has lost mental capacity, it can be difficult to be sure what their intentions were when they did have capacity. Mental capacity assessments explore these issues in detail, to achieve the most accurate possible interpretation of wishes and feelings. When a person’s mental capacity is intact, they can state their wishes in order to guide decisions should they lose capacity in the future. This is known as making a statement of ‘advance decisions’. In the next activity, you hear from Lesley, who discusses her advance decision in relation to her long-standing mental health problems. Activity 8 Lesley’s advance decisions Allow about 30 minutes Lesley Murray has had bipolar affective disorder for many years. This has meant that she has often temporarily lost the capacity to make decisions for herself. In the video you hear Lesley talking about how, since her diagnosis, she has made a statement of advance decisions. This has helped put her illness and its management in better perspective, and she feels that she is now much more in control in the long term should things deteriorate again. Watch the Mental Welfare for Scotland comission video of Lesley talking about her advance decisions statement. Think about the deterioration in Lesley’s mental state and what might have helped her to make longer term decisions. Now look at one of the following documents. You may choose to look primarily at a version that relates more to a UK nation that is of particular interest to you, rather than at all three options. A Guide to Advance Statements (for Scotland) Advance decisions, advance statements and living wills (for England and Wales, a factsheet by Age UK) Northern Ireland here. How might such a statement have benefited Catherine, the lady with dementia in Activities 6 and 7? Write your ideas in the text box below. Catherine’s situation is perhaps less clear cut than Lesley’s. Lesley is younger and has lost and gained mental capacity a number of times. She might find it easier to contemplate her future than Catherine. We don’t know much from the case study details, but Catherine’s mental deterioration may have been gradual and accompanied by diminishing contact with her few remaining relatives. There may have been no one around to discuss longer term arrangements that take account of her advancing years and declining capacity.

3.3 Legal authority and the courts The Court of Protection (England and Wales), the Sheriff Court (Scotland) or the High Court (Northern Ireland) are where matters of legal authority ultimately rest when there are concerns or disputes about the financial or welfare matters of people lacking mental capacity. These courts deal with issues of decision making on behalf of someone else where that person is assessed as not having the capacity to represent and manage matters for themselves. Watch the video below, which is a brief introduction to the Court of Protection (England and Wales). It is produced by a commercial law firm. It is not presented here as an endorsement of or recommendation for this firm. In the future the default position will be for public not private hearings. A brief Introduction to the Court of Protection (England and Wales) MARIA NICHOLAS What is the court of protection? Who needs it? And what powers does it have? Is it a secret court? My name is Maria Nicholas. I'm a solicitor and a director at GN Law. I had our court of protection department, and I specialise in mental capacity law. In this video I'm going to talk about what the court of protection is. [METALLIC SHIMMER] The court of protection determines issues for adults who are considered to lack mental capacity. You can see a separate video on the website about what having mental capacity means, and how to test it. The court of protection only has jurisdiction, meaning it only has the power to make a decision if it is satisfied that the person in question lacks the requisite capacity. That means that, in turn, that the decision needs to be made on their behalf, in their best interests. The court deals with a huge variety of cases, ranging from disputes about where it is in a learning disabled person's best interest to live, to what medical treatment an incapacitated person should have, to how to manage a personal injury payment for someone who has been in an accident and suffered a brain injury as a result of that accident. The court has powers, firstly, to make declarations about capacity in best interests. Secondly, to appoint a deputy to act on someone's behalf. Thirdly, to determine the validity of a lasting power of attorney. Fourthly, to make a statutory will for someone who lacks capacity. And lastly, to resolve disputes between family members, or between a family and the local authority, or NHS as to what is in someone's best interests. Despite some media representations of it, the court is not a secret one. Hearings are held in private. But that is to protect fundable adults from the sensitive issues that are often discussed in such hearings. Increasingly, more and more judgments are being made public. And journalists are now allowed to attend more hearings than they were previously. The cases are usually reported anonymously to protect the individual's privacy. Please do take a look at the other videos on this site about mental capacity and the court of protection, as they may answer some other queries that you may have. Or call me or one of my colleagues for a free chat to see if we're able to help. [METAL SHIMMERING] NARRATOR This video is designed to be a brief introduction to the topic that it covers. And we hope you found it useful. It aims to be informative and to assist people to take the next step in solving the legal problem that they may have. This video does not constitute legal advice, and does not seek to solve specific legal issues. If you have a specific legal problem that you need solved, you should take expert legal advice from a solicitor.

Certain situations are beyond the remit of family members and local professionals to resolve on their own. The law makes this very clear and courts are authorised to arbitrate and direct options in such circumstances.

This week’s quiz Check what you’ve learned this week by doing the end-of-week quiz. Open the quiz in a new window or tab then come back here when you’ve finished. Week 7 quiz Summary The key learning points from this week are: When supporting older people to make decisions or when making decisions on their behalf, risk needs to be balanced with well-being and personal choice. Personhood is a useful concept for challenging our assumptions and attitudes in relation to older people and mental capacity; in law, everyone is considered a ‘person’ and worthy of moral consideration. Social pressures and practical realities can impinge on older people’s lives, even though they may have capacity, for example in driving, their daily living routines and whether they live alone. The law can intervene in disputes or where risks can be anticipated and decisions made while capacity is intact. Measures include power of attorney, advance decisions and the intervention of the Court of Protection may be brought into play. You should now be able to: explain some of the attitudes towards and expectations of older people in UK society explain how assessing mental capacity often involves balancing risk and safety against choice and wellbeing define what it means to be a ‘person’ describe three common issues for older people that are linked to mental capacity: driving vehicles, daily living routines and living alone outline three mechanisms where decision making is delegated or wholly assumed by others: power of attorney, advance decisions and the Court of Protection. Further reading For more on power of attorney, see Office of the Public Guardian, Scotland’s Office of the Public Guardian or Northern Ireland’s Office of Care and Protection. Week 8: Mental capacity: the future Introduction Congratulations on reaching the final week of the course.

Hopefully you have developed an understanding of mental capacity and gained useful insight into who is affected by this issue and how. You have also thought about how mental capacity is relevant to you. This week you will explore how the way in which mental capacity is managed through the law may change in the next ten years. You will also consolidate your learning and think about your next steps. By the end of this week you should be able to: describe possible changes in mental capacity law and outline key themes describe some of the particularly useful or surprising things you have learned on this course start to make plans for your future learning, your personal situation and any professional development needs you have identify whether you wish to make any plans for your own situation in relation to mental capacity and if so, how. 1 How the law is changing Mental capacity as it is understood and managed through the law may change in the next 10 years. This is affecting legislation in England, Wales, Northern Ireland and Scotland. You now hear from some of the people who are closely involved with changes to mental capacity law in the UK and consider the possible future of mental capacity law in the UK. Brendan Kelly has an in-depth understanding of matters as they are currently affecting the Republic of Ireland. In theaudio below he talks about revisions to mental capacity law in the Republic of Ireland which were incorporated in the Mental Capacity Bill of 2015. (A bill is a proposal for a new law, or a proposal for a change to existing law, that is presented for debate in Parliament.) Brendan discusses whether the different models of decision making defined in the law can help those who may lack metal capacity. He also suggests how legislative advances can be made in this area in the future. Looking at countries other than your own in this way can bring different perspectives. As you listen consider what changes might happen and why they are occurring. Audio of Brendan Kelly: Revising, reforming and reframing BRENDAN KELLY In the Republic of Ireland, the mental capacity law that's presently in force dates from 1871. And in 2015, we passed a new piece of legislation, but it has not yet been commenced. The proprietary work is underway. So maybe the most important feature of Irish capacity legislation in the Republic of Ireland is how old it is, and how unfit for purpose it is and has been. For nearly a century, it's been outdated. But progress is being made. We're at a point of very great transition, when a new piece of legislation, the Assisted Decision-Making (Capacity) Act has been passed by Parliament, signed by the president. But it's not been activated, because proprietary work is underway. So there is great change in the air. But the challenges with the new legislation will be very great. The greatest challenge in mental capacity legislation in the Republic of Ireland is implementing the 2015 act, the new legislation. This introduces three levels of decision-making support. So up to this point, somebody with impaired mental capacity, the only option really was that they were declared a ward of court. And the court, the high court, got responsibility for all decision-making in relation to the person, responsibility that it quickly delegated, usually to named persons. But it was an all-or-nothing approach, and it still is today. The new legislation will abolish that all-or-nothing system and introduce three levels of decision-making support for each decision. So if, for example, someone cannot decide about health care, they could appoint the lowest of the three levels of support, called a decision-making assistant. They could appoint a co-decision-maker that is a joint decision maker. That's the middle of the three levels of support. Or if their capacity is seriously impaired, they can go to court, or a court hearing can occur, and a court can appoint a co-decision-maker. That's the middle of the three levels. Or the court can appoint a decision-making representative, someone to make decisions on behalf of a person. So the biggest challenge will be moving from the current all-or-nothing approach to this new, graded level of capacity structure, so that you have three new levels of support in making decisions. The second biggest challenge will be the cultural shift from the old system, where the high court took over all powers of decision-making, to the new one, which is based on the person's will and preference. So the three levels of decision-making support, people acting in those roles, they can't do what they think is the right thing to do. They're under a legal obligation to assist the person doing what the person wants to do themselves. So the cultural shift is the second, and possibly the greater challenge. The Assisted Decision-Making (Capacity) Act of 2015, which will be implemented in the coming years, is part of a process that will hopefully result in the Irish government ratifying the Convention on the Rights of Persons with Disabilities, the UN CRPD as it's called, which Ireland has signed, but it has not yet ratified. So it is hoped that this will allow that to happen. And if the new legislation is activated in due course, in the coming couple of years, and the government goes ahead and signs the CRPD, that will produce much broader change in terms of respect for mental capacity. There will be knock-on effects to other areas of law. For example, in relation to criminal law, there might be consequences, and also law relating to property and other matters. So I suppose that the biggest change we'll see will be a sort of a domino effect. If the progress on the 2015 act allows signing of the Convention of the Right to Persons with Disabilities, that would bring a host of new responsibilities to the government-- in summary, to make reasonable accommodation for persons with impaired capacity and persons with disabilities. Now, not everyone with disability has impaired capacity, but there is some overlap there. So the next 10 years will see a lot of change in that area, following on from the 2015 act. Now listen to three short audios that talk about changes in legislation in England and Wales, Northern Ireland and Scotland. Tim Spencer-Lane talks about England and Wales, Gavin Davidson about Northern Ireland and Colin McKay about Scotland. Audio of Tim Spencer Lane TIM SPENCER-LANE The Mental Capacity Act of 2005 is a crucial piece of legislation for people who lack decision making capacity. It covers people in England and Wales-- it covers the law of England and Wales, in fact-- and there are a number of important provisions within it. It's still seen as being a visionary piece of legislation, something that's very important in terms of trying to empower people who lack capacity, or who may lack capacity, to enable them to make decisions for themselves, or for best interested decisions to be made on their behalf. In terms of the two things that are very important about the act, these are mainly kept in the principles. The act sets out a number of principles which may be applied to decisions under the act. There are two key principles in this regard. The first one is the assumption of capacity. In other words, decision makers must start from a default position that the person is able to make the decision for themselves. It's only when they have reason to believe that the person may lack decision making capacity that a decision can be made on their behalf. The second important provision is the so-called second principle of the act, the supported decision making principle. So this requires decision makers to provide services and to assist people to try to enable them to make a decision for themselves before deeming that person as lacking capacity to make the relevant decision. There are a number of challenges to the mental capacity act. The big challenge is the poor lack of implementation of it. There seems to be a lack of knowledge in some sectors, and to be frank, it's not being implemented often in the way that it should be. This was highlighted by a House of Lords post-legislative scrutiny committee report, which came out a few years ago. It praised the mental capacity act, but felt it wasn't being implemented properly in practise, and therefore, recommended more education and more-- an information campaign about the pros of the capacity act and how to comply with it. There's likely to be big changes in the next 10 years to mental health and mental capacity legislation. This is being driven by two main forces. The first is the United Nations Convention on the Rights of Persons with Disability. This requires law to pay far more attention to the person's wishes and feelings, when it comes to making decisions for a person lacking capacity. So there will be pressure on the mental capacity act to include much more provision for recognising the person's wishes and preferences. The other challenge is likely to be around the issue of deprivation of liberty. The Law Commission, in 2017, produced a report which recommended that the deprivation of liberty safeguards, which are attached to the Mental Capacity Act, should be overhauled, as a matter of urgency, and replaced with a new scheme, which they call the liberty protection safeguards. The reason for this is that the deprivation of liberty safeguards aren't working properly. They're not providing safeguards in the vast majority of cases, where people lacking capacity are being deprived of their liberty. It's likely that the government will be looking to introduce new legislation on this subject over the next two years. So there will be, I think, very big changes to the Mental Capacity Act in the coming years. England and Wales: Tim discusses the Mental Capacity 2005 which covers England and Wales and in particular two important principles: the assumption of capacity and supported decision making. He discusses the challenges the Act has faced especially around its poor implementation and suggests that there are likely to be big changes in next ten years to address the need to include much more provision for recognising people’s wishes and feelings as driven by United Nations Convention on Rights of People with Disability and also to address the Deprivation of Liberty Safeguards which are not working properly Audio of Gavin Davidson: Incapacity law in Northern Ireland – proposed frameworks INSTRUCTOR The current legal framework in Northern Ireland for making decisions for people who are unable to do so is provided through two main mechanisms. The first is a statute law. It's the Mental Health Northern Ireland Order in 1986. It's a traditional mental health law. So there are criteria for a compulsory intervention for mental disorder and risk. The second main part of the current legal framework in Northern Ireland is the common law. So under the common law, if a person is proposing to make a decision for someone else, they're protected from liability for prosecution. They can demonstrate that they had or have a reasonable belief that the person they are proposing to make the decision for lacks the capacity to do so, and the intervention that they're proposing is in the person's best interests. There are two things that are important about the current framework in Northern Ireland. The first is that there is no statute law to cover mental capacity or incapacity enforced in Northern Ireland. So there are no set processes to assess [? the ?] past [? date ?] intervene, and/or to provide safeguards to ensure people's rights are protected. It also means that if there are any [? difficults ?] and/or disputed decisions about treatment or welfare which aren't covered by the mental health order, then those have to go to the high court for a declaratory order. Arguably in the current system, due to developments in human rights, especially the [INAUDIBLE] case, that all decisions, for example, regarding deprivation of liberty, should be being referred to the high court. And that raises one of the main challenges with the current legal framework in Northern Ireland. If that were to happen, I think it's reasonable to say that the high court would be overwhelmed. Another central and important challenge for the current legal framework is that it's discriminatory. So under the Mental Health Order, a compulsory intervention is allowed based on mental disorder and risk. But that can be regardless of whether the person has the capacity to make the relevant treatment decision or not. So treatment can be forced even if a person has the capacity to refuse that treatment, as long as the mental disorder and risk criteria are met. That doesn't apply in any other aspect of health and welfare decision making. So it's essentially discriminatory. In terms of what will or might change in the next 10 years, in May of 2016, the Northern Ireland Assembly passed the Mental Capacity in Northern Ireland Act, 2016. It's not yet enforced. But if it does come into force, it's an extremely progressive legal framework, because it will provide one framework for everyone in Northern Ireland who lacks the capacity to make decisions. So it will replace the Mental Health Order. So we won't have two laws running in parallel. We'll just have one legal framework for everyone. It has the support principle within it, which will provide a statutory duty for people to provide support for people to make their own decisions. So it's potentially extremely positive. But there is some uncertainty about how and when it will be implemented. But hopefully soon, and effectively. Northern Ireland: The current law has both strengths and limitations. The proposed new framework was passed in May 2016 but may not be implemented for three to four years. Will replace the relevant common law and Mental health Order with a capacity based law. Will it introduce the use of more formal processes in decision-making? Audio of Colin McKay: Incapacity law reform in Scotland: a chance to lead again? Scotland: was progressive principle-based legislation but there are now significant concerns about its practical application in particular the interpretation of the Deprivation of Liberty safeguards. Following a consultation more reforms are being suggested including a new form of ‘graded guardianship’ and the possibility of a fused mental health and mental capacity law. Activity 1 How the different nations are changing Allow about 5 minutes Think about the information and opinions you’ve just heard. Are there similarities between the different UK nations or is each country different? The four interviewees summarise what practitioners think may happen in the next ten years. Are these developments the same in each country? Is there anything that surprises you when they were talking? Make a note of your thoughts in the box below which will help you in this week’s quiz. Similarities Similarities between the different nations include the principles upon which the legislation and subsequent processes are based – these were outlined in Week 3. For all nations, proposals to change legislation are affected by case law such as the Cheshire West case. Differences Differences included the fact that the mental capacity and mental health legislation in Northern Ireland has been fused. This may be something that Scotland will adopt. Most of the differences between nations tend to be in the use of language. The dates of legislation are also different. 2 What have you learned?

There is a range of possible reasons why you wanted to study this course. Perhaps you are considering volunteering in a setting that provides care for people who lack mental capacity. Perhaps you are already working in such a setting and wanted to build up your knowledge. Perhaps you care for a relative or friend who lacks mental capacity or wanted to know more about making decisions on behalf of others. Decisions concerning mental capacity might be affecting you at the moment or may do so in the future. Whatever your reasons for doing the course, reflecting on what you have learned will help you think about your next steps. This might be looking for a new course to study or looking at options for your professional development. You might want to identify future plans for yourself or think about those for someone for whom you are caring. Reflection is an integral part of learning and throughout this course you have had a lot of practice in applying key ideas to your own experience. You may already have made a note of questions you want to think about further or topics that particularly interested you. In the next activity you will go back over the topics you’ve covered and remind yourself what you found particularly interesting or relevant. There may have been some ideas or activities that you found more challenging than others that you want to look at again. Activity 2 Reviewing the topics and activities Allow about 30 minutes Table 1 reminds you of the topics you covered in each week. Identify those you feel confident about and those you would like to look at again. You might want to revisit the activities associated with each topic to remind yourself. Reviewing the material in this way will help you when you come to the compulsory quiz at the end of the week. Table 1 Topics covered on this course

Week	Key topics	I am confident about these	I would like to learn more about these
1.	defining mental capacity
2.	understanding decision making
3.
4.
5.
6.
7.
8.

Completing this table will have given you a sense of what you have achieved so far. You might have noted some topics that particularly interested you and that you want to study further. Next you will develop these thoughts and think about putting them in to action. Activity 3 What do you want to study next? Allow about 10 minutes Identify three areas that you would like to know more about. This may be through further study, your work or in your personal life. Try to make your ideas quite specific. So, instead of writing ‘look again at doing an assessment’, write something like ‘practise using the assessment documents.’ Note down whether you think this is something you could do now or would be best done in the future, and whether you would like to do it through more learning. Table 2 has been partially filled to show the kind of information you need to capture. Table 2 Priority areas

Priority area	Why?	What I want to do	How I might do it
Practise doing a mental capacity assessment	To make sure I understand what a mental capacity assessment is	Look again at the forms and complete them as if it was my work role	Discuss this when I am looking at my development needs in work
Consider my financial circumstances	To ensure that others understand my wishes should I lose mental capacity	Look again at the information concerning making decisions about money	Revisit the section on decision making and search other resources

When you have identified your priorities, you will be in a good position to decide on your next steps. These could involve further learning in your personal life or in your current or future workplace. 3 What do you want to do next? Having reviewed what you have learned about mental capacity and identified areas you would like to learn more about, now is the time to clarify your thoughts before deciding on your next steps.

If you did this course for personal interest you may not have any next steps. You may be happy with what you now know and may not wish to do any further learning. If, however, you are thinking about what to do next, the following activity will help you work through some decisions. Activity 4 Clarifying your thoughts Allow about 20 minutes Read through the list of questions below and make some notes. The questions are divided into topics related to learning, personal circumstances and professional development. They are designed to prompt your thinking. As there may be quite a lot to consider here, you might want to make detailed notes and reflect upon them before moving on to your next decision. Learning Did you enjoy learning online? What are the best aspects and what did you find challenging? Did you enjoy learning about mental capacity? Were there topics you wanted to know more about that were not covered by this course? If so, what were they? Do you want to do another course? If so, which subject area? Personal circumstances How do you think that issues of mental capacity apply to you? Have you considered what you might do now or in the future in relation to your own mental capacity? You may be caring for someone who permanently or periodically lacks mental capacity. Has the course helped you to understand the implications of this? If so, how might you use this knowledge to help the person you are caring for? If a lack of mental capacity is affecting you or someone you care about, do you want to learn more about the support that’s available? Professional development If you are already working with people who lack mental capacity, do you want to stay in your current role? What do you like best about your current role and what do you like least? If you want to stay in your current role, what would improve it? What further skills or knowledge do you need to acquire? Reflecting on these questions should have helped you clarify what you want to change, if anything, or how you want to progress. You might have found that you are happy with your current situation and do not wish to do any further learning or make any changes. If you do wish to change or progress things, read through your notes again and summarise what you would like to do next. For example, ‘I would like to learn more about what might happen if I lost mental capacity in the future’ or ‘I want to develop my understanding of mental capacity in order to further my career in social care.’ You might have a lot of ideas about what to do next. Think about one at a time. Be realistic. You need to think about the time you have available to plan and implement any changes. Your ideas may be a mixture of short-term and long-term ones. The next section will help you with planning some of these steps. Having reviewed your learning and clarified your ideas about possible future steps, you are now in a better position to think about how to achieve what you want to do next. You will do this in the next section. Even if you do not want to take the subject any further, you will still find this section useful. 4 Next steps The next activity helps you to build on what you have learned about mental capacity during the course and gives you an opportunity to think ahead. It is divided into the three areas you considered in the previous activity: learning, personal life and professional development. You may wish to think about all three or choose the one that is most relevant. As you will have learned when you study mental capacity through legislation there are slight differences depending on the UK nation where you live or work. You are reminded to bear this in mind for your next steps. Activity 5 Next steps Allow about 30 minutes 1. Learning: Many courses on mental capacity are available. Type ‘mental capacity training’ into a search engine and browse through the results, making notes if necessary. Look at what the courses cover (including which nations of the UK), who they are aimed at and whether they cost or are free of charge. You probably noticed that your search brought up a range of courses. Some are free, others charge. Most are aimed at those already working in social care settings. However, this is not always the case; some courses are equally relevant to people who study in relation to their personal circumstances. When I searched, the courses that appeared first related to the Mental Capacity Act 2005 which refers to England and Wales only. You may want to look for courses that apply to the country where you live and work. Some courses offer a more in-depth look at mental capacity. For example, some refer to ‘deprivation of liberty’, which has not been covered in any depth in this course. Deprivation of liberty is a specialist and fast-changing area of mental capacity. You may feel that you now have enough knowledge to learn about it in more detail. Apart from courses, there is also much written material on mental capacity. This is often available through libraries and some of it can be accessed online. Some suggestions are also be found here Adams, J., Leshone, D. (2016) Active Social Work with Children with Disabilities Northwich Critical Publishing Ltd. Barber, P., Brown, R., Martin, D. (2017) Mental Health Law in England and Wales - a guide for mental health professionals, 3rd ed., London Learning Matters, Sage Brown, R. (2016) The Approved Mental Health Professional's Guide to Mental Health Law, London, Sage. Brown, R. A., Barber, P., Martin, D (2015) The Mental Capacity Act 2005: A guide for practice, 3rd ed., London, Sage. Department for Constitutional Affairs (2007) Mental Capacity Act 2005, Code of Practice, London, The Stationary Office Department of Health. (2017) Care Act (2014) Statutory Guidance, London HM Government. Jones, R. (2014) Mental Capacity Act Manual, 6th ed., London, Sweet and Maxwell. Maclean, S., Shiner, M., Surtees, R. (2015) Social Care and the Law in Scotland Lichfield, Kirwin Maclean Associates Ltd. Patrick, H., Stavert, J. (2016) Mental Health, Incapacity and the Law in Scotland Haywards Heath Bloomsbury Professional Limited Rogers, J., Bright, L., Davies. (2015) Social Work with Adults London, Learning Matters, Sage Ruck Keene, A., Edwards, K., Eldergill, A. and Miles, S. (2014) Court of Protection Handbook: A User’s Guide, London, Legal Action Group. Ruck-Keene, A.,, Butler-Cole, V., Allen, N., Lee, A., Bicarregui, A., Edwards, S. (2016) A brief guide to carrying out Best Interests assessments, London, 39, Essex Chambers, Sinson, J. (2017) Applying the Mental Capacity Act 2005 in Education (a practical guide for education professionals) London Jessica Kingsley Publishers Social Care Institute for Excellence (SCIE). (2017) Mental Capacity Act (MCA) Directory, Valios, N. (2017) Five key steps to assessing capacity London Community Care. 2. Your personal life: If you want to look at how a decline in mental capacity might affect you, type ‘mental capacity and how it affects me’ into a search engine. This time your search will have returned links to agencies that provide advice and support, and links to bodies that regulate social care services such as the Care Quality Commission. You may want to look in more detail at these links and the help that is on offer. It is helpful to use the thoughts that occurred to you in Activity 3 to make sure that you are not overwhelmed by the different choices that might appear. 3. Your professional development: If you are already working either as a volunteer or in a paid capacity in a social care setting, you may already have access to training on mental capacity. This course and your reflections this week may have given you further ideas about training that could be provided. You may want to show parts of this course to others or look into training that relates to mental capacity. Your agency should have a training area where you can find details of courses like this. Future opportunities might include those offered for ‘named’ social workers (to be called ‘approved mental capacity professionals’ in the future). You may also wish to explore how mental capacity interacts with other pieces of legislation such as on mental health or care. If you do wish to develop your skills and knowledge in this way, discuss it in your place of work. To finish this week take a look at this transcript in which a current practitioner discusses their thoughts about mental capacity. Take a note of the main issues they discuss. This week’s quiz You are now ready to take the final quiz, which counts towards your badge. It is similar to the quiz that you took in Week 4, with 15 questions in total. As with all the other quizzes, you have three chances to answer each question. If you are not successful the first time, you can attempt the quiz again in 24 hours. Take your time reading the questions and possible answers to give yourself the best chance of showing all your knowledge and understanding. Open the quiz in a new tab or window (by holding ctrl [or cmd on a Mac] when you click the link). Week 8 compulsory badge quiz Summary This week you have reviewed and reflected on the learning you have done in this course and identified any further steps you would like to take. You have also listened to practitioners talk about what mental capacity means for the general public and for practice as it is applied in each nation of the UK. The language used and the timing of legislative changes might differ slightly, but overall, matters of mental capacity in all four nations are based on the same principles, values and attitudes. In turn these principles underpin actions, central among which are the assessment of mental capacity and supporting someone who may lack capacity or whose capacity fluctuates. The course finishes with the same message with which it began: mental capacity is relevant to us all. You should now be able to: describe possible changes in mental capacity law and outline key themes describe some of the particularly useful or surprising things you have learned on this course start to make plans for your future learning, your personal situation and any professional development needs you have identify whether you wish to make any plans for your own situation in relation to mental capacity and if so, how. Other OpenLearn content you may be interested in... Courses Making sense of mental health problems Challenging ideas in mental health Interactive A Support Net: Can you help someone in need? Articles Cultural differences in mental health Do I have mental health problems and should I get some help? How is a bench helping improve mental health in Zimbabwe? Nutritional psychiatry is the future of mental health treatment Investigating links between pesticides and mental health Homeland, Carrie and how mental health is portrayed on-screen Audio Mental Health Lennox Castle Tell us what you think Now you’ve completed the course we would again appreciate a few minutes of your time to tell us a bit about your experience of studying it and what you plan to do next. We will use this information to provide better online experiences for all our learners and to share our findings with others. If you’d like to help, please fill in this optional survey. Further reading For more on power of attorney, see Office of the Public Guardian, Scotland’s Office of the Public Guardian or Northern Ireland’s Office of Care and Protection. Alzheimer’s Research UK (2017). Statistics about Dementia [Online]. Available at www.dementiastatistics.org/statistics-about-dementia/ (Accessed 4 August 2017). Health and Social Care Information Centre (2017) Statistics on Alcohol, England, 2016. HSCIC and ONS. Available at https://www.gov.uk/government/statistics/statistics-on-alcohol-england-2016 (Accessed 11 October 2017). NHS Digital (2016) Adult Psychiatric Morbidity Survey: Mental Health Well-being in England, 2014. [online] Available at http://digital.nhs.uk/catalogue/PUB21748 (Accessed 12 October 2017). NHS National Services Scotland Information Services Division (NSS ISD) (2016) Estimated and Projected Diagnosis Rates for Dementia in Scotland: 2014-2020. Available at http://www.gov.scot/Resource/0051/00511467.pdf (Accessed 13 November 2017) Public Health England (2016) Learning Disabilities Observatory People with learning disabilities in England 2015: Main report, [online] Available at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/613182/PWLDIE_2015_main_report_NB090517.pdf (Accessed 12 October 2017). Social Care Institute for Excellence (SCIE) (2016) Mental Capacity Act at a Glance [online]. Available at www.scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance (Accessed 22 August 2017). Mencap (undated) Mental Capacity Act resource pack: for family carers of people with a learning disability, Mencap. Available at https://www.mencap.org.uk/sites/default/files/2016-06/mental%20capacity%20act%20resource%20pack_1.pdf (Accessed 12 October 2017). Adults with Incapacity (Scotland) Act 2000. Available at www.legislation.gov.uk/asp/2000/4/section/1 (Accessed 21 August 2017). Department for Constitutional Affairs (2013) Mental Capacity Act Code of Practice, London: The Stationery Office. Available online at www.gov.uk/government/uploads/system/uploads/attachment_data/file/497253/Mental-capacity-act-code-of-practice.pdf (Accessed 21 August 2017). Mental Capacity Act 2005. Available at www.legislation.gov.uk/ukpga/2005/9/contents (Accessed 21 August 2017). Mental Capacity Act (Northern Ireland) 2016. Available at www.legislation.gov.uk/nia/2016/18/contents/enacted (Accessed 21 August 2017). Social Care Institute for Excellence (2016) Mental Capacity Act 2005 at a glance [online]. Available at www.scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance (Accessed 21 August 2017). Mental Capacity Act 2005 c. 9 Part 1 Preliminary, Section 4. Available online at www.legislation.gov.uk/ukpga/2005/9/section/4 (Accessed 21 August 2017). Social Care Institute for Excellence (2016) The Mental Capacity Act at a glance [online]. Available at www.scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance (Accessed 21 August 2017). Valios, N. (2016) ‘Five steps to assessing capacity’, Community Care, 1 July 2016, Community Care. London. Available online at www.communitycare.co.uk/2016/07/01/five-key-steps-assessing-capacity(Accessed 21 August 2017). Department of Education (2017) Child Sexual Exploitation. Available online at www.gov.uk/government/uploads/system/uploads/attachment_data/file/591903/CSE_Guidance_Core_Document_13.02.2017.pdf (Accessed 21 August 2017). D (A Child) (Deprivation of Liberty) [2015] EWHC 922 (Fam) Nationmaster (2014) Age of Criminal Responsibility: Countries Compared [Online]. Available at www.nationmaster.com/country-info/stats/Crime/Age-of-criminal-responsibility (Accessed 14 August 2017). Office of the Public Guardian (Scotland) (2017) What Service do I Need? [Online]. Available at www.publicguardian-scotland.gov.uk/general/what-we-do/what-service-do-i-need#Case studies (Accessed 14 August 2017) The Scottish Parliament (2013) McKenzie Norrie, K., Giving evidence to the Education and Culture Committee on the Children and Young People (Scotland) Bill in 2013. Available here https://www.youtube.com/watch?v=nNcJgDWvx3o 12.05 to 15.05 (Accessed 13 November 2017) Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century, White Paper CM 5086, HMSO, London. Also available online at www.gov.uk/government/uploads/system/uploads/attachment_data/file/250877/5086.pdf (Accessed 14 August 2017). Cheshire West and Chester Council v P [2014] UKSC 19, [2014] MHLO 16 Law Commission (2017) Mental Capacity and Deprivation of Liberty, Law Com No 372, London, HMSO. Stewart, A. and McIntyre, G. (2017) Parents with Learning Disabilities, IRISS Evidence Summary 37, Strathclyde University. Graham, M. (2016) ‘Understanding of the Mental Capacity Act in work with older adults exploring the “unintended consequences” for service users’ emotion wellbeing’, Working with Older People, vol. 20, no. 3, pp. 151–56. This free course was written by Sarah Vicary and Alun Morgan. Week 1 Images Figure 1 :Photograph: © Paul Pitman in Flickr https://creativecommons.org/licenses/by/2.0/ Figure 2: (top left); sturti/Getty Images ; (top right): monkeybusinessimages/Getty Images; (bottom left): Credit:monkeybusinessimages/Getty Images (bottom right): Eva Katalin Kondoros/Getty Images Figure 3: Sasi Ponchaisang/123RF Week 2 Images Figure 1: Vincent Diamante in Flickr https://creativecommons.org/licenses/by-sa/2.0/ Figure 3: © jessica rivera in Flickr https://creativecommons.org/licenses/by-nc-sa/2.0/ AV Video: 1.2, 2, 3.4: courtesy Social Care Institute for Excellence https://www.scie.org.uk/ Week 3 Text Box 1: extract from: Social Care Institute for Excellence (2016) Mental Capacity Act 2005 at a glance. www.scie.org.uk/mca/introduction/mental-capacity-act-2005-at-a-glance ⁷⁰ Box 2: extract from Principles of the Incapacity (Scotland) Act 2000 in Adults with Incapacity (Scotland) Act 2000. Crown Copyright material is reproduced with the permission of the Controller of HMSO and the Queen’s Printer for Scotland Open Government Licence http://www.nationalarchives.gov.uk/doc/open-government-licence/version/3/ . Images Figure 2: cover of Mental Capacity Act © Crown Figure 3: cover of Adults with Incapacity (Scotland) Act 2000 © Crown Figure 4: cover of Mental Capacity Act (Northern Ireland) 2016 © Crown AV Video: Section 2.1, courtesy © Social Care Institute for Excellence https://www.scie.org.uk/ Week 4 Text Box 1: Extract from, Valios, N. (2016) ‘Five steps to assessing capacity’, Community Care, 1 July 2016, Community Care. London..www.communitycare.co.uk/2016/07/01/five-key-steps-assessing-capacity www.communitycare.co.uk. Courtesy Natalie Valios. Box 4: extract from, Mental Capacity Act 2005 c. 9 Part 1 Preliminary, Section 4. www.legislation.gov.uk/ukpga/2005/9/section/4 Crown Copyright https://www.nationalarchives.gov.uk/doc/open-government-licence/version/3/ Images Figure 1: photograph © Alan Levine in Flickr Figure 2: ©iqoncept/123RF AV Activity 1: video, courtesy: © Social Care Institute for Excellence https://www.scie.org.uk/ Activity 3: video, courtesy: © Social Care Institute for Excellence https://www.scie.org.uk/ Week 5 Images Figure 1: © gajus/123rf Figure 2: © monkeybusinessimages/Getty Images Figure 3: © Wavebreak Media Ltd/123rf Figure 4: © Sergii Muzhchil/123rf Figure 5: © dszc/Getty Images Figure 6: © jeremyiswild/Getty Images Figure 7: © somethingway/Getty Images AV Activity 2: video, BBC news TX: 17.10.85 © BBC Activity 3: video, courtesy: © Social Care Institute for Excellence https://www.scie.org.uk/ Activity 4: video, courtesy: © Social Care Institute for Excellence https://www.scie.org.uk/ Activity 5: video, Taylor’s Story: courtesy: © The Children’s Society https://www.childrenssociety.org.uk/ Week 6 AV Activity 1: video, courtesy: Mencap https://www.mencap.org.uk/ Activity 2: video, courtesy: Change People http://www.changepeople.org/ Activity 5: audio, extract from BBC Radio 4 file on 4 first broadcast 13 September 2016 © BBC Activity 6: video, courtesy: Department for Communities and Local Government https://www.gov.uk/government Week 7 Images Figure 1: ©Tommaso Lizzul /123rf AV Activity 2: videos, 2 extracts from BBC series Can Gerry Robinson Fix Dementia Care Homes? © BBC 2009 3.3: video: courtesy: GN Law https://www.gnlaw.co.uk/ Week 8 AV Figure 1: © bubaone/Getty Images Figure 2: © szefei/123rf Figure 3: © Ilkefoto/Getty Except for third party materials and otherwise stated (see terms and conditions), this content is made available under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 Licence. The material acknowledged below is Proprietary and used under licence (not subject to Creative Commons Licence). Grateful acknowledgement is made to the following sources for permission to reproduce material in this free course: Every effort has been made to contact copyright owners. If any have been inadvertently overlooked, the publishers will be pleased to make the necessary arrangements at the first opportunity. Don't miss out If reading this text has inspired you to learn more, you may be interested in joining the millions of people who discover our free learning resources and qualifications by visiting The Open University – www.open.edu/openlearn/free-courses.