Course Slides Legal capacity and the right to decide WHO/Harold Ruiz WHO QualityRights core training: mental health & social services QualityRig WHO/MSD/QR/19.3 World Health Organization 2019
Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. Legal capacity and the right to decide. WHO QualityRights Core training: mental health and social services. Course slides. Geneva: World Health Organization; 2019 (WHO/MSD/QR/19.3). Licence: CC BY-NC-SA 3.0 IGO. Sales, rights and licensing. To purchase WHO publications, see http://apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http://www.who.int/about/licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-party-owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet
be full agreement. The mention of specific companies or of certain manufacturers products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. Cover photo. WHO /Harold Ruiz Accompanying course guide is available here https://www.who.int/publications-detail/who-qualityrights-guidance-and-training-tools WHO QualityRights: Goal and objectives GOAL: Improve access to good quality mental health and social services and to promote the human rights of people with mental health conditions, psychosocial, intellectual or cognitive disabilities Build capacity to combat stigma and discrimination and promote human
rights and recovery Improve the quality and human rights conditions in mental health and social services Create community-based services and recovery-oriented services that respect and promote human rights Support the development of a civil society movement to conduct advocacy and influence policy-making Reform national policies and legislation in line with the CRPD and other international human rights standards 3 A few words about terminology in this training 1 Language and terminology are used differently by different people in
different contexts. Psychosocial disability includes people who have received a mental healthrelated diagnosis or who self-identify with this term. Cognitive disability and intellectual disability refer to people who have received a diagnosis related to their cognitive or intellectual function, including dementia and autism. The term disability highlights the barriers that hinder the full participation in society of people with actual or perceived impairments and the fact that they are protected under the CRPD. The use of disability in this context does not imply that people have an impairment or a disorder. 4 A few words about terminology in this training
2 People who are using or who have previously used mental health and social services refer to people who do not necessarily identify as having a disability but who have a variety of experiences applicable to this training. The term mental health and social services refers to a wide range of services provided by countries within the public, private and nongovernmental sectors. Terminology has been chosen for inclusiveness. It is a personal choice to self-identify with certain expressions or concepts, but human rights apply to everyone everywhere. A diagnosis or disability should never define a person. We are all individuals, with a unique social context, personality, goals, aspirations and relationships with others.
5 What we aim to achieve during this module During this training, participants will: learn to challenge the misconceptions around the decision-making skills of people with psychosocial, intellectual and cognitive disabilities; understand article 12 of the CRPD and the right to legal capacity; learn how to respect the right to legal capacity in specific scenarios; gain applied knowledge of supported decision-making and advance planning; explore how to ensure that people are not detained and/or treated against their wishes.
6 Topics covered in this module Topic 1: Understanding the right to legal capacity Topic 2: Supported decision-making and advance planning Topic 3: Informed consent and person-led treatment and recovery plans Topic 4: Avoiding involuntary detention and treatment in mental health and social services 7 Topic 1: Understanding the right to legal capacity
8 Presentation: Brief introduction to the module This training explores how to promote a persons right to legal capacity within mental health and social services. Upholding peoples right to make their own choices and decisions can seem challenging in some situations. what about people who want to end their lives or people with severe dementia? What if someone is experiencing an acute crisis or extreme states or is doing things that are, or seem, dangerous? What if refusing treatment means the person might get worse? What if someone is unconscious or otherwise unable to communicate their will and
preference? Is it really feasible to promote the right of people to make decisions for themselves even in these kinds of scenarios? Even in challenging situations, we must strive to find ways to ensure people have final say in decisions. There are always ways to promote peoples right to exercise their legal capacity. 9 Exercise 1.1: Its my decision - 1 Do all people have the ability to make their own decisions at all times?
10 Exercise 1.1: Its my decision - 2 It is important to acknowledge that there may be situations or times when making decisions is more difficult. However, this should not be a reason for depriving people of their rights. Many strategies can be used to ensure that these situations are addressed without the denial or restriction of a persons rights. 11 Presentation: The right to legal capacity - 1
The right to legal capacity is guaranteed by Article 12 of the CRPD 12 Presentation: The right to legal capacity - 2 Article 12: Equal recognition before the law Paragraph 1: States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law. The law must recognize that people with disabilities are human beings with rights and responsibilities like anyone else. 13
Presentation The right to legal capacity - 3 Article 12: Equal recognition before the law Paragraph 2: States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. People with disabilities have the same rights as everybody else and must be able use them. People with disabilities must be able to act under the law which means they can engage in transactions and create, modify or end legal relationships. They can make their own decisions and others must respect their decisions. 14 Presentation: The right to legal capacity - 4
Article 12: Equal recognition before the law Paragraph 3: States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. When it is hard for people with disabilities to make decisions on their own, they have the right to receive support to help them make decisions. 15 Presentation: The right to legal capacity - 5 Article 12: Equal recognition before the law Paragraph 4: States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in
accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the persons circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the persons rights and interests. When people receive support to make decisions, they must be protected against possible abuse. Also: the support that the person receives should respect the rights of the person and what the person wants; it should not be in the interest of or benefit others; the persons providing support should not try to influence the person to make decisions
they do not want to make; there should be the right amount of support for what the person needs; 16 Presentation: The right to legal capacity - 6 Article 12: Equal recognition before the law Paragraph 5: Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property. Countries must protect the equal rights of people with disabilities:
to have or be given property; to control their money; to borrow money; and to have their homes or money taken away from them. 17 Understanding the distinction between legalcapacity capacity and- mental capacity Presentation:
The right to legal 7 (a) Legal capacity is an inherent and inalienable right. It includes two dimensions: the right to hold rights, and the right to exercise these rights. The right to legal capacity is necessary for the enjoyment of all other rights. Mental capacity refers to the decision-making skills (or decision-making abilities) of a person. In the mental health field, capacity tests are often used to try to determine whether a person can:
understand information about a decision understand the potential consequences of the decision communicate the decision. Capacity tests are generally carried out by health practitioners or capacity assessors. 18 Understanding the distinction between legalcapacity capacity andmental capacity
Presentation: The right to legal 8 (b) The concept of mental capacity and capacity tests is flawed because the way we make decisions cannot be measured scientifically. Sometimes we make decisions based on rational reasons and sometimes they are based on our emotions and feelings. When a person with a psychosocial, intellectual or cognitive disability makes a decision that others do not agree with, it is often assumed that the person is not capable of making the decision due to their
condition. However, this should not be a reason for denying people the right to make decisions. 19 Understanding the distinction between legalcapacity capacity andmental capacity Presentation: The right
to legal 9 (c) Having mental capacity is often incorrectly assumed to be a stable and permanent status that people either have or do not have. But how well we make decisions varies at different times in our lives. Making decisions may at times be more difficult (e.g. Due to stress, tiredness, health condition, etc.) Our ability to make decisions may also improve over time as we learn new skills and have new experiences. Important to change negative stereotypes and misconceptions that
people with psychosocial, intellectual or cognitive disabilities do not have the mental capacity to make decisions. 20 Understanding the distinction between legalcapacity capacity and- mental Presentation: The right to legal 10 capacity
(d) Both these misconceptions and the misinterpretation of the term mental capacity have led to the denial of the right to legal capacity. According to article 12 of the CRPD, the right to legal capacity can never be taken away from a person. Everybody has the right to legal capacity irrespective of their decision-making skills. A psychosocial, intellectual or cognitive disability can never justify denying someone the right to legal capacity. 21
Presentation: The right to legal capacity - 11 Formal and informal decision-making (a) The right to legal capacity concerns all areas of life. When people are denied the right to make decisions, they are in fact deprived of a critical and fundamental right to live their lives as they wish. Article 12 clearly states that all people, including people with disabilities, must have the right to make decisions for themselves, to have those decisions respected by others, and to have the decisions recognized as valid under the law. 22
Presentation: The right to legal capacity - 12 Formal and informal decision-making (b) Formal decisions for people with psychosocial, intellectual or cognitive disabilities are often made by court-appointed guardians, health practitioners and families. In the case of informal decision-making, many of the day-to-day decisions in all aspects of life are taken out of the hands of people with psychosocial, intellectual or cognitive disabilities and instead are made by others, particularly families and care partners. 23
Presentation: The right to legal capacity - 13 Settings where the right to legal capacity is denied (a) Where does the denial of the right to legal capacity occur? 24 Presentation: The right to legal capacity - 14 Settings where the right to legal capacity is denied (b) The denial of the right to legal capacity happens: in communities at home in mental health and social services (both inpatient and outpatient)
in places where people are detained. 25 Presentation: The right to legal capacity - 15 Settings where the right to legal capacity is denied (c) At home, people are in some cases denied the right to make decisions about their own lives and daily activities. Family members may make all these decisions for them, often with good intentions and a desire to (over)protect their relatives. Families often fear that their relative will fail, be abused, get hurt or be taken advantage of.
26 Presentation: The right to legal capacity - 16 Settings where the right to legal capacity is denied (d) Denial of legal capacity also occurs very often in mental health and social services. Involuntary admission and treatment denies people the right to exercise free and informed consent to health care. Legal capacity is also denied to people who are not involuntarily admitted and treated because, even in these cases, staff assume that a person cannot make decisions. The simple threat of involuntary admission and treatment may result in the acceptance of unwanted practices by some people.
27 Presentation: The right to legal capacity - 17 Settings where the right to legal capacity is denied (e) Such practices in services may reflect common negative stereotypes and discriminatory views. Assumptions about peoples decision-making abilities are often made because staff find it easier and quicker to make these decisions themselves. The result is that decision-making powers are taken away from people and there is a general failure to talk with and listen to them. People with psychosocial, intellectual and cognitive disabilities also face denial of their right to legal capacity on a day-to-day basis in their own
communities. 28 Presentation: The right to legal capacity - 18 Gender and legal capacity (a) Women with disabilities may face even more denial of their right to legal capacity as a result of multiple discrimination. Their rights to maintain control over their reproductive health, including on the basis of free and informed consent, are often violated through patriarchal systems of substituted decision-making. 29
Presentation: The right to legal capacity - 19 Gender and legal capacity (b) Women institutionalized against their will in India. Human Rights Watch, 2013: https://youtu.be/NZBxI9pNYHw 30 Exercise 1.2: Denial of legal capacity 1 Scenario: Soledad (a) Soledad is a 40-year-old woman who has lived for 10 years in a social care home. She lives in a small, clean room, that she shares with a roommate she has not chosen herself. She was brought to the social care home because of mood swings and loss of memory. She suffers
from infections and describes her health as bad. Her days are long and empty and constantly follow the same, boring routine: early rise, some cleaning, food, mandatory rest as if they are toddlers and exercise twice a week (an hour in the yard of the fenced social care home). There is hardly an opportunity to leave the home. All residents are told that the outside world is extremely dangerous and that they are kept behind closed doors for their own security. Many of the residents have internalized this fear and therefore prefer to stay inside. There is no possibility for Soledad to escape from the rigid life at the home; no individuality is allowed and there is no possibility to engage in her hobbies of playing the piano and singing. She is convinced that, should she be given the opportunity, she could have a job, for instance in a sewing studio. The quality of life often lies in small things. She likes reading, but her glasses are broken. Although she often asks the staff for a replacement, so far her requests have been to no avail. The antenna from her small television set is broken but no
one is able to repair it. Soledad longs for more attention and affection from the staff. If residents dont comply with 31 Exercise 1.2: Denial of legal capacity - 2 Scenario: Soledad (b) In which ways are Soledads right to legal capacity being violated? 32 Presentation: The consequences of denying the right to legal capacity - 1
What are the harmful consequences of the deprivation or restriction of the right to legal capacity on peoples lives? How would you feel if/how did you feel when you were deprived of your right to legal capacity? 33 Presentation: The consequences of denying the right to legal capacity - 2 Denying people the right to make their own decisions means that they have very little (or no) control over some or all aspects of their lives. The right to legal capacity is fundamental to human personhood and
freedom. It protects the dignity and autonomy. Making ones own decisions is very important because: It allows people to control their own lives. It allows people to be full members of their community and for others to respect them as such. It allows people to better defend themselves against abuses, exploitation and discrimination. It conveys to everyone that people must be respected and treated as 34 Presentation: Summary of the topic 1 UN CRPD: What is Article 12 and Legal Capacity? Mental Health Europe.
https://youtu.be/8WhxKJtOXec 35 Presentation: Summary of the topic - 2 1. Common misconceptions and stereotypes about peoples decisionmaking skills must be challenged: People with psychosocial, intellectual or cognitive disabilities can make decisions and have the right to do so. 2. Everyones ability to make decisions can vary for many different reasons. There may be times when people find it easier to make decisions, and other times when they find it challenging. This is true for all people. 3. Varying abilities to make decisions cannot be a reason to deny people the right to legal capacity. According to article 12, all people with disabilities must be able to exercise their right to legal capacity at all times.
4. The right to legal capacity is a critical and fundamental right: we all need to enjoy this right to be recognized and to participate in society. 36 Presentation: Summary of the topic - 3 Having the right to legal capacity at all times does not mean that people never need or want support in making decisions. The CRPD acknowledges this and states that people should have access to the support they may want and require in order to be able to exercise their right to legal capacity. This is known as supported decision-making.
37 Topic 2: Supported decisionmaking and advance planning 38 Topic 2: Supported decision-making and advance planning Supported decision-making is key to respecting a persons right to legal capacity. A supported decision-making approach involves cooperating with the person in the process of making a decision and upholding the persons right to have a final say over that decision.
Implementing a supported decision-making approach can improve everyday practice in mental health and social services. 39 Exercise 2.1: Discussion on supported decisionmaking In what ways do you think persons can be supported to make their own decisions in the context of a mental health or related service? 40 Presentation: Supported decision-making 1
At times, we may all need support to make decisions in different areas of life. At times like these it can be useful to turn to people we trust who can support us in the process of making our decision. In acknowledgement of this, article 12 of the CRPD recognizes and promotes the concept of supported decision-making. People must have access to a variety of support options. including the support of people they trust (e.g. family, friends, peers, advocates, lawyers, personal ombudsperson, etc.). Art 12 recognizes that building on peoples unique abilities and providing them with the support they require allows them to make their own decisions. 41
Presentation: Supported decision-making - 2 A person may need support to understand information, weigh up different options, understand the possible consequences and communicate their decisions to others. E.g. a peer supporter can support a person to understand and weigh up the benefits and/or negative effects of a particular course of treatment and communicate these if the person wishes. Support must be tailored to the individual. At times people may need no support at all, while at other times they need low-level support. and sometimes more intensive support. E.g. a person in the early stages of dementia may need minimal or no support at all, whereas in later years the same person may need more intensive support.
42 Presentation: Supported decision-making - 3 It is important to remember that, unlike the need for support, the right to exercise legal capacity never fluctuates or varies. Different support options both formal and informal may exist. Most existing models of support are not yet fully compliant with the CRPD E.g. criticisms that some models are led and directed by professionals or that they still use involuntary treatment. It is important to acknowledge these limitations and keep in mind that these services could be further improved to achieve full compliance with the CRPD. 43
Presentation: Supported decision-making - 4 Circle of support (Australia, United Kingdom) (a) A Circle of Support (sometimes called a Circle of Friends) is a group of people who meet together on a regular basis to help a person (the focus person) accomplish their personal goals in life. The Circle acts as a community around the person concerned, providing them, when needed, with support to achieve what they want in life. The person being supported is in charge of: deciding who to invite to be in the Circle deciding on the direction that the Circle's energy should be employed. A facilitator is normally chosen from within the Circle to take care of the work required to keep it running.
44 Presentation: Supported decision-making - 5 Circle of support (Australia, United Kingdom) (b) Circle of Support, Inclusion Melbourne: https://youtu.be/fhF6mv03Cx0 45 Presentation: Supported decision-making - 6 Personal ombudsperson (Sweden) The Personal Ombudsperson in Sweden is a model of supported decisionmaking being offered by several NGOs. A personal ombudsman is a skilled person who helps clients with a range of
issues: family-matters, housing, access to services or employment. A personal ombudsman only does what their clients want them to do. The model is based on a long-time relationship of trust. It is a long-time engagement for both the personal ombudsman and the clients. https://youtu.be/5aVdoaX9YXk 46 Presentation: Supported decision-making 7 Personal assistance Personal assistance refers to person-directed/user-led human support delivered to a person with disability. Personal assistance is a tool for independent living.
Personal assistants can be trusted individuals who will talk through options with the person, and support them in communicating their will and preferences to others, etc. 47 Presentation: Supported decision-making 8 Open Dialogue (Finland) Open Dialogue is a Finnish alternative to the traditional mental health system for people diagnosed with "psychoses" such as "schizophrenia". It supports individual's network of family and friends, and respects the decisionmaking of the individual. The person seeking support, family and care partners are invited to participate alongside Open Dialogue team in daily meetings
Everyone openly voices and reflects on their thoughts and feelings, and everyones voice is heard A shared language is created and the participants build up a new understanding between each other. Team provides immediate help within 24 hours of the first contact. It engages social networks, rebuild relationships and seeks to avoid medication and hospitalization No exact treatment plan is prepared -approach is flexible and adapts to changing 48 Presentation: Supported decision-making 9 The importance of support
Formal forms of support should not replace informal support networks which are essential in peoples day-to-day lives. When informal networks are nonexistent or weakened, it is very important to support the person to rebuild and/or consolidate them. At the same time, it may be necessary to advocate for more formalized forms of support networks for people who need and want them. 49 How can mental health and social services facilitate supported decisionPresentation: Supported
decision-making 10 making? (a) Mental health and social services have a responsibility to facilitate supported decision-making actively by ensuring that people are able to invite trusted persons from the community to come to the service to support them. They can also facilitate contacts between the person and supported decisionmaking NGOs, advocates or peer supporters who can act as a decision supporter if this is what the person wants. 50 How can mental health
and social services facilitate supported Presentation: Supported decision-making - 11decisionmaking ? (b)
Supported decision-making checklist. Do you? Provide relevant information: Does the person have all the relevant information he or she needs to make a particular decision? Does the person have all the information they are asking for? Have they been given information on all available options?
Communicate in an appropriate way: Explain or present the information in a way that is easier for the person to understand (e.g. by using simple, clear and concise language or visual aids). Explore different methods of communication if required, including nonverbal communication. Ascertain if anyone else can help with communication (e.g. a family member, support worker, interpreter, speech and language therapist or advocate) and that the person accepts this help Make the person feel at ease: Identify if there are particular times of day when the persons understanding is better. Identify if there are particular locations where the person may feel more at ease. Ascertain whether the decision could be put off to see whether the person can make the decision at a later time when circumstances are right for them. Support the person: Ascertain if anyone else can help or support the person to make choices or express a view.
51 Supported decision-making is not the same as substitute decision-making Presentation: Supported decision-making - 12 (a) In supported decision-making a support person never makes decisions for, on behalf of, or instead of the person with a psychosocial, intellectual or cognitive disability.
All forms of support, including the most intensive, must be based on the will and preferences of the person concerned. 52 Supported decision-making is not the same as substitute decision-making Presentation: Supported decision-making - 13 (b)
The will and preferences of the person are different from what is perceived by others as being in their best interest. In many countries, the standard for making a decision for a person is their best interest. This needs to change. When the person is unable to communicate their wishes and preferences directly, decisions must be made based on the best interpretation of the will and preferences of the person by, for example: referring to what is already known about the person; referring to advance planning documents containing the persons will and preferences; when nothing is known about the person/person unable to communicate wishes, staff must do their best to try to understand will and preferences 53
Supported decision-making is not the same as substitute decision-making Presentation: Supported decision-making - 14 (c) Supported decision-making is different from existing systems such as guardianship, wardship and other substitute decision-making regimes. Supported decision-making is not just a new term for describing these preexisting models. It is about implementing a completely different approach of decision-making
in which the person always remains at the centre of the decision. 54 Supported decision-making is not the same as substitute decision-making Presentation: Supported decision-making - 15 (d) In many countries, existing law and policy frameworks still provide for
substitute decision-making models. Lobbying and advocacy are key to changing existing laws, policies and practices which are not in line with the CRPD. Reform may take time, but there are many things individuals can do to support people to make their own decisions within existing legal or policy frameworks. It is also possible to support people to terminate their substitute decisionmaking regimes. 55 Presentation: Supported decision-making - 16 Supported decision-making is voluntary (a) Supported decision-making is voluntary
It should not be imposed on people. If a person chooses not to have support, then their wishes should be respected. Many people have expressed the concern that, in some situations, if the person refuses support, they may put themselves or others in danger. However it is important to note that imposing or forcing treatment itself can cause harm either immediately and/or in the future. 56 Presentation: Supported decision-making - 17 Supported decision-making is voluntary (b) How can we avoid exploitation from supporters?
Mostly, family, friends and other supporters are well-intentioned but sometimes, in the context of providing supported decision-making, some people may try to take advantage, exploit or harm the person Safeguards are therefore necessary to make sure that exploitation does not take place or that potential situations of abuse are recognized and addressed early. 57 Presentation: Supported decision-making - 18 Supported decision-making is voluntary (c) It is important to train the following people on strategies to prevent and deal with potential exploitation from supporters:
people with psychosocial, intellectual or cognitive disabilities families, care partners and other supporters mental health and other practitioners peer workers and advocates legal professionals other relevant people from the community. The training should address the social factors and processes that might make exploitation more likely. 58 Presentation: Supported decision-making - 19
Supported decision-making is voluntary (d) Key issues to consider: 1. Practitioners should not take on the role of formal supporters because of the huge conflict of interest. 2. Supporters roles should last for the shortest time possible & tailored to persons circumstances. 3. Supporters must not profit from the funds of the people they are supporting. 4. Independent supporters should be made available whenever a person asks for them. 5. When support is formal and/or intensive, safeguards are needed so that supporters respect will and preferences or best interpretation of will and preferences. 6. Complaints, monitoring and legal mechanisms should be in place to hold
accountable people who abuse supportive role. 59 Exercise 2.2: Scenarios on supported decisionScenario Rohinis story (a) making -1 Rohini is a 27-year-old woman. Her work colleagues became concerned for her as they noticed important changes in her behaviour. The colleagues suggested that they accompany Rohini to a community-based mental health service and Rohini agreed to this. At the community-based mental health service, Rohini is received by two mental health workers. Rohini becomes increasingly distressed, saying that they want to harm her. She starts shouting that she does not want them to give her an injection. A nurse, one of the mental
health workers, reassures her that nothing bad is going to happen, and that they want to help her. She then asks Rohini if she would like to move to a quieter space so that they can talk and identify what type of support would be helpful. The nurse asks Rohini if she would like to call someone who she trusts, who could help her. Rohini informs her that she would like to see her mother. When her mother arrives, Rohini is still very distressed, shouting that she does not want an injection. Her mother explains to the nurse that the last time she went to a hospital, in the capital city of the country, she was given an injection of haloperidol (an anti-psychotic medication). Her mother further explains that Rohini had reacted badly to this medication, experiencing painful muscle contractions and confusion as a result. 60 Exercise 2.2: Scenarios on supported decisionScenario Rohinis
story (b) making -2 The nurse tells Rohini that she will not be given haloperidol, and Rohini starts to calm down. Over the course of the week, Rohini works with her mother, the nurse and a doctor to develop a treatment and recovery plan. She is informed of different options for treatment, including benefits and negative effects, and is asked for her consent to treatment. In addition, after consultation with people of her choice including her mother, the doctor and nurse Rohini develops an advance plan so that staff will know never to give her haloperidol, and also so that they will know her preferences for treatment. In the plan she nominates her mother to be contacted in case of an emergency to support her, if desired, in communicating her wishes during crisis situations. The staff ask Rohini if it would be helpful for her to stay at the service for a few days to start her off on her treatment, to which she agrees. After three days
she feels much better and is subsequently discharged. Rohini has since joined a peer support group which meets once every two weeks in her neighbourhood. At these meetings she is able to share her knowledge and experiences with others in the group, and can get emotional and practical support from other members. She has also arranged to meet with her boss and other close colleagues to discuss what has happened and what actions can be taken by them to support her in the future, should another crisis arise. 61 Exercise 2.2: Scenarios on supported decisionScenario Rohinis story (c) making3 What were the positive aspects of this case?
How was Rohinis right to legal capacity respected? 62 Exercise 2.2: Scenarios on supported decisionScenario Zaitins story (a) making -4 Zaitin is unhappy with her current living arrangement with her grandmother and wishes to move. She is 33 years of age and has a boyfriend she hopes to marry in the future. Once married, she would like to move in with his family. In the past, Zaitins grandmother has ignored her opinions and has made decisions for her. Her grandmother does not believe that people with intellectual disabilities, including Zaitin, should marry.
Zaitin feels her grandmother is overprotective. She feels conflicted because she would like to have more independence and to make her own choices about marriage, but she also wants to maintain a positive relationship with her grandmother. She has a support worker, Rosa, whom she trusts and has chosen to seek her support in making decisions. Zaitin shares with Rosa her unhappiness concerning the disagreement she is having with her grandmother and her desire to marry. They discuss the possibilities of moving once married. They also discuss options to improve Zaitins relationship with her grandmother, so Zaitin feels more confident and independent. Rosa and Zaitin discuss if she would like to arrange a meeting with her grandmother to discuss her desire to be married and move. They also discuss a plan to arrange a meeting with her grandmother and her boyfriends parents. Zaitin was not sure how soon she would like to schedule these conversations. After the conversation, Zaitin decides to discuss this topic next week with Rosa.
63 Exercise 2.2: Scenarios on supported decisionScenario Zaitins story (b) making -5 What were the positive aspects of this case? How was Zaitins right to legal capacity respected? 64 Exercise 2.2: Scenario on supported decisionScenario Samirs
story (a) making -6 Samir is 68 and was diagnosed with dementia several years ago. When he first arrived at the care home, he did not feel his own choices were respected. He felt that some of the staff made him do things that he did not want to do and they also often rushed him to make quick decisions during the course of his day. After several months, Samir spoke with management to make a complaint. Since then, another member of staff, Fadi, supports Samir in his day-to-day life. When Fadi visits Samir each morning he asks him what he would like to do first to begin the day. He often does not respond immediately, so Fadi gives him time to speak. When it appears Samir is struggling for ideas of what to do, Fadi
offers suggestions. Samir then has the opportunity to choose for himself what he would like to do first. 65 Exercise 2.2: Scenarios on supported decisionScenario Samirs story (b) making -7 What were the positive aspects of this case? How was Samirs right to legal capacity respected by Fadi?
66 Presentation: Advance planning 1 Advance planning is another useful form of support which helps to ensure that a persons preferences are considered and respected. Advance planning may be useful to everyone, especially during times when people may be having difficulties in making or communicating decisions. Advance planning refers to the process of giving directives about future situations when persons may experience difficulties in making their will and preferences known to others, and when they would like support from or actions to be taken by others. 67
Presentation: Advance planning - 2 Advance planning can have two functions: 1. If a person has difficulty in expressing his or her wishes, the people providing support and care to that person can refer to the advance plan as a communication tool and reference to find out the persons wishes and preference. 2. In some countries, advance plans can also be used as a legal document in which the person authorizes or refuses certain actions in the future. Advance plans are not static: Peoples views, will and preferences may evolve and people can and do change their minds about things. Supporters should therefore engage and consult with the person on a regular
basis. Advance plans are sometimes also known as living wills or advance directives 68 Presentation: Advance planning - 3 Content of advance plans (a) An advance plan is a written document that specifies future choices. This can include a description of desired support designated supporters and/or advocates recovery options, treatments place of care or respite.
For health-related decisions, people can generally specify if they would refuse certain support, care or treatment options.. If the advance plan is intended as a legal document, it should state in which situation it comes into effect in which situation it ceases to have effect. 69 Presentation: Advance planning - 4 Content of advance plans (b) In some communities and cultures, people may not have a tradition of
writing documents. Other forms of support such as support networks may be more appropriate. This does not prevent people from making their wishes known orally to their family, friends, care partners and other relevant people. Some people may want to delegate choice and control to other persons they trust at certain times. Advance planning should allow for this kind of situation, as long as it respects the will and preference of the person. 70 Presentation: Advance planning - 5 Content of advance plans (c)
Planning ahead living with younger-onset dementia, Ageing, SA Health, Adelaide, Australia. https://youtu.be/8sVCoxYbLIk Kate Swaffer, Co-founder, Chair & CEO of Dementia Alliance International ( www.infodai.org). 71 Presentation: Advance planning - 6 Advance planning and the law (a) Some countries have developed law to make advance planning documents binding. Anyone providing support, including practitioners, are legally required to follow the directives.
To date, binding advance planning documents have not been fully compliant with the CRPD: In some countries they can be overridden when a person is involuntarily admitted to service. Thus people can be given treatment against their will despite directive to the contrary. Advance plan often come into effect only after an assessment mental capacity and subsequent deprivation of legal capacity. Although the content of the advance plan must be followed, the person is no 72 Presentation: Advance planning - 7
Advance planning and the law (b) Example: German law Germany has a law that makes advance directives binding, including in the context of mental health care. People may nominate a supporter whose role is to assert the persons will to the practitioner. The law also specifies that, if the person does not have an advance directive, their presumed will and preference concerning treatment must be determined on the basis of specific evidence such as previous oral statements. Following the entry into force of the law, people using mental health services have developed a model of advance directive against any form of coercion in psychiatry, which is called PatVerf.
73 Presentation: Advance planning - 8 Advance planning and the law (c) Even when countries do not have laws or legal provisions relating to advance plans/directives, this does not prevent mental health or social services from implementing such plans. Services can allow and encourage people to make advance plans and, when the situation requires their use, respect the directives stated in a persons plan. In addition, advance directives do not replace the need and duty to respect a persons autonomy and right to legal capacity at all times.
74 Exercise 2.3: Discussion on advance planning Scenario Jasmines story (a) 1 Before her discharge from hospital, Jasmine decides to make an advance plan. She specifies in her plan that she absolutely does not want to be given a specific type of antidepressant as it makes her very anxious. She also specifies in the plan that she finds one-to-one counselling useful when she is depressed. Two years later Jasmine presents herself to the psychiatric unit of a hospital where she is admitted as she is feeling very depressed. Because of her state of mind, she is finding it very hard to communicate with staff at the hospital. While trying to facilitate communication with her, staff members refer to her advance plan and are able to see that she must not be given the specific
antidepressants she does not like. They also organize for Jasmine to undertake counselling sessions with the service psychologist. To make sure that they respect Jasmines dignity and legal capacity they regularly ask her how she feels about these actions being put in place. 75 Exercise 2.3: Discussion on advance planning Scenario Jasmines story (b) 2 What do you think the impacts of Jasmines advance planning might be?
76 Exercise 2.3: Discussion on advance planning Scenario Jasmines story (b) 3 What do you think the impacts of Jasmines advance planning might be? 77 Exercise 2.3: Discussion on advance planning Scenario Hirotos story (a) 4 Hiroto is 52 years of age and has intellectual disabilities. He lives with his
mother and father, of his own choice. As Hirotos main supports, his parents wanted to ensure that his personal wishes continue to be honoured when they die. To prepare for this time, Hirotos parents support him to write an advance directive. The aim of the directive is to set out his wishes with his physician and social services. He decides he would like to remain at home living independently for as long as he is comfortable, but he would like the option to live with his brother if he needs to. Hiroto trusts his brother and has a close relationship with him. Hiroto gives permission for his brother to speak to staff in the event he is finding it difficult to communicate. If he is having difficulty communicating, he has requested his brother use a method they have used at home which allows Hiroto to point to images to indicate his choices and preferences in response to a question.
78 Exercise 2.3: Discussion on advance planning Scenario Hirotos story (b) 5 What do you think the impacts of Hirotos advance planning might be? 79 Exercise 2.3: Discussion on advance planning Scenario: Bintous story (a) 6 Bintou is a 31-year-old woman who lives in a small village with her older sister who provides
her with ongoing support. Bintou received a diagnosis of autism at the age of 10. Two months ago, Bintou fell and broke her ankle. Her sister looked for Bintou when returning home from the market. She was informed by a neighbour that several hours ago Bintou had been taken to the hospital to be treated. Bintou finds it difficult to communicate verbally. The hospital staff did not know Bintou or how to best communicate with her. When Bintou became distressed and confused, the staff isolated her and tied her to a bed and gave her sedatives to calm her down. She was alone and did not have her sister to help with communication. This was a very stressful and frightening experience for Bintou. Bintou and her sister have talked about planning ahead if a similar situation should arise one day in the future. Both Bintou and her sister want to make sure that what happened two months ago does not happen again. Together they recorded Bintous preferences and wishes should she need support to make decisions for herself or during a time when her
sister is unavailable. Bintou specifically states she does not want to be tied to a bed again or to be given sedatives. She requests that her sister be her main contact in case of emergencies. 80 Exercise 2.3: Discussion on advance planning -7 Scenario Bintous story (b) What do you think the impacts of Bintous advance planning might be? 81
Topic 3: Informed consent and person-led treatment and recovery plans 82 Presentation: Informed consent 1 Obtaining informed consent to treatment is essential to respecting the right to legal capacity. 83
Presentation: Informed consent - 2 Informed consent means that: The person is given enough information about the proposed treatment to make an informed decision, including: possible benefits and negative effects/risks of the proposed treatment; possible alternatives to the proposed treatment; possible benefits and risks of not accepting the proposed treatment and/or of choosing one of the alternatives. information is given in a way that the person can understand and is adapted to their needs. The information is given in a way which is culturally acceptable to the person.
The consent to treatment is given voluntarily: without threat or coercion Without undue influence Without deception, fraud, manipulation or false reassurance 84 Presentation: Informed consent - 3 It is important to be aware of the risk of undue influence. There is sometimes a fine line between supporting people in making their decision and unduly influencing them. The support should ideally come from outside the service. The right to informed consent also includes the right to refuse treatment.
85 Presentation: Person-led treatment and recovery plans - 1 An increasing number of services in countries around the world are adopting a recovery approach to mental health. A recovery approach promotes the principles of legal capacity and informed consent, among others, in line with the Convention on the Rights of Persons with Disabilities (CRPD). 86 Presentation: Person-led treatment and recovery
plans - 2 Recovery is different for each person. Recovery is about being able to live a life which is meaningful for the person, in the presence or absence of symptoms. Treatment and recovery plans outline which treatments or support people want to receive and which they do not want, as well as which mental health and other practitioners or supporters they want to involve in their care and recovery, if any. Treatment and recovery plans respect the right to legal capacity by ensuring that people make all decisions concerning their own care. 87
Presentation: Person-led treatment and recovery plans - 3 When people make decisions about their treatment and support, they are likely to choose options that meet their needs. More likely that the support/treatment they choose will be more effective than that imposed on them. Initially, person should be offered as much information as possible about different options. As the support and/or treatment process evolves, the person will gain more and more knowledge about what works for them They may continue to seek and investigate new options or may find one or
more that work well. Everyones recovery journey is unique. Promoting the right to make decisions concerning treatment and recovery is an essential part of promoting autonomy and self-determination and 88 Presentation: Person-led treatment and recovery plans - 4 Peer advocacy in action. iNAPS, 2012: https://youtu.be/zDkfPVG-xA4 This is an example of a situation where a person is able to decide about where she wants to live in the community after the closure of the state mental health hospital where she resides.
89 Topic 4: Avoiding involuntary detention and treatment in mental health and social services 90 Exercise 4.1: The experience of involuntary admission and treatment - 1 The words of a survivor of the mental health system, Australia
Nothing could prepare me for the experience of being taken against my will not by the police or even an ambulance, but by an older sister who felt she knew best. What followed was the most violent of admissions. Totally traumatized and in shock, the sheer panic of dealing with my new reality never went away. I was manhandled, forcibly injected and held against my will for more than a month . Along with the feeling of disempowerment and humiliation that involuntary hospitalization brings, patients who are said to be capable of harm are more often violated and harmed themselves. It is made all the worse since most are never believed; instead they are accused of being delusional and ungrateful. This in itself is a barrier to true healing since inhumane treatment leaves one feeling less than human. While some may see the psychiatric ward as a place of safety, for most it is nothing more than a prison . There remains a huge power imbalance, not only during hospitalization but also when community orders dictate what medications must be taken after patients are no longer
hospitalized. Since failing to comply with such orders leads to further incarcerations, this is nothing more than a form of control. Most patients leave this system with lost dreams and lives forever watched over by the system they can never escape. This is a violation of our human rights as outlined in the United Nations Convention. 91 Exercise 4.1: The experience of involuntary admission and treatment - 2 How do you feel about this testimony? 92
Presentation: What does the CRPD say about involuntary detention and treatment? - 1 People with psychosocial, intellectual or cognitive disabilities are often detained in mental health and social services against their wishes. Sometimes, people may voluntarily enter mental health and social services because no alternatives are available. Homeless people may be sent to services and institutions against their wishes because it is believed they are better off within a service. People detained against their wishes are very often given forced treatment. Involuntary detention and treatment can last for days, weeks, months and even years. 93
Presentation: What does the CRPD say about involuntary detention and treatment? - 2 Some laws allow people to be detained and treated on the basis that they are diagnosed or perceived as having a particular condition or disability. The law may require other criteria (e.g. need for care and treatment, risk of health deterioration without treatment, danger to self/others). These laws discriminate against people with psychosocial, intellectual and cognitive disabilities in that they allow for these persons detention in situations where other persons would not be involuntarily detained. Even other groups at higher risk of violence cannot be detained on the basis of increased violence risk.
94 Presentation: What does the CRPD say about involuntary detention and treatment? - 3 How would you feel if you were detained and treated against your will? How did you feel when you were detained and treated against your will? 95 Presentation: What does the CRPD say about
involuntary detention and treatment? - 4 The CRPD aims to address this situation by offering clear guidance on changing practices and laws. The rights protected by the CRPD are all interrelated. Many of these rights reinforce the fact that people must not be detained or treated against their wishes or on the basis of having a disability. 96 Presentation: What does the CRPD say about involuntary detention and treatment? - 5 Article 5: Equality and non-discrimination According to article 5, people with disabilities should enjoy their rights on an
equal basis with others. People being treated for physical health conditions cannot generally be detained in health services and treated without their informed consent. The fact that people with psychosocial, intellectual and cognitive disabilities can be detained and treated against their wishes constitutes discrimination on the basis of a disability, hence this violates article 5. 97 Presentation: What does the CRPD say about involuntary detention and treatment? - 6 Article 12: Equal recognition before the law Article 12 underlies, and is indispensable to, all the other articles of the CRPD.
By protecting the right to legal capacity, the CRPD ensures that people have the right to make decisions on all aspects of their lives, including care and treatment. Informed consent must always be sought before admission or treatment in a mental health or related service. Mental health and other practitioners should engage directly with the person and not only with the persons family or supporters. Practitioners should also try to ensure that the person is not unduly influenced by others when making a decision on care or treatment. Practitioners must make sure that people receive accommodation for their disability and any independent support that they need in order to make or communicate decisions on care and treatment. 98
Presentation: What does the CRPD say about involuntary detention and treatment? - 7 Article 14: Liberty and security of person Article 14 guarantees the right to liberty and security. It makes clear that disability shall in no case justify a deprivation of liberty. This means that disability can never be a basis for depriving someone of their liberty. People with disabilities can only be detained on the same basis (or for the same reasons) as all other citizens. Therefore people with psychosocial, intellectual or cognitive disabilities should never be detained in mental health and social services or institutions because they have a disability, even when additional criteria are involved.
99 Presentation: What does the CRPD say about Article 15: Freedom from torture or cruel, inhuman or -degrading treatment involuntary detention and treatment?
8 or punishment, and Article 16: Freedom from exploitation, violence and abuse Involuntary admission and treatment in mental health and social services often causes people severe pain and suffering and can have extremely negative consequences for their health and well-being. Involuntary admission and treatment are experienced, and considered as, violent and abusive acts which can amount to torture and ill-treatment in violation of articles 15 and 16 of the CRPD. 100 Presentation: What does the CRPD say about
involuntary detention and treatment? - 9 Article 17: Protecting the integrity of the person Article 17 recognizes that people with disabilities have a right to respect for their physical and mental integrity on an equal basis with others. Forced detention and treatment violates peoples physical and mental integrity and are therefore contrary to article 17. 101 Presentation: What does the CRPD say about involuntary detention and treatment? 10 Article 19: Living independently and being included in the community
Article 19 states that people with disabilities have the right to live independently and to be included in the community. They must be able to: choose their place of residence where and with whom they live on an equal basis with others must not be obliged to live in a particular living arrangement. Thus, the involuntary detention of people with psychosocial, intellectual and cognitive disabilities in mental health or social services is a direct violation of article 19. 102
Presentation: What does the CRPD say about involuntary detention and treatment? - 11 Article 22: Respect for privacy Detention in mental health and social services can violate peoples right to privacy. When people are detained and treated against their will, often practitioners are allowed to access personal information without the persons consent. People may share personal information with their mental health professional and then discover the information has been given to many other people. People often lack privacy because practitioners and others: can access their room without their consent they have no space to store their personal belongings, etc.
103 Presentation: What does the CRPD say about involuntary detention and treatment? - 12 Article 25: Health Article 25 explicitly requires that health professionals provide care on the basis of free and informed consent. This means that treatment can be given to people only if they explicitly give their informed consent. 104 Presentation: What does the CRPD say about
involuntary detention and treatment ? - 13 Other CRPD articles Other articles are also frequently violated as well (eg. work, participation etc.) Despite the fact that involuntary detention and treatment violate the rights guaranteed by the CRPD, in countries all over the world people continue to be subject to these practices in mental health and social services. Monitoring and review mechanisms need to be in place to ensure that people are not being detained or treated involuntarily 105 Exercise 4.2: What about in my country ? - 1
People with psychosocial, intellectual or cognitive disabilities need, in some cases, to be given treatment against their wishes. 106 Exercise 4.2: What about in my country ? 2 After this discussion, has anyone changed their mind? 107 Exercise 4.2: What about in my country ? - 3
People with psychosocial disabilities in some cases need to be involuntarily admitted to mental health facilities. 108 Exercise 4.3: Scenario on avoiding coercive Scenario 1: George measures - 1 (a) One night, George was brought to the emergency department of the hospital by the police. George was distressed, agitated and anxious, shouting and making wild gestures. Without a full assessment and without contacting Georges supporters in order to try to better understand what may be happening with George, doctors
decided that George was unsafe to be in the community and required treatment. George makes it very clear that he did not want to be treated. The doctor in charge decided that the quickest way to deal with this situation was to get four staff persons to restrain George, tie his arms and legs to a bed in an isolation room, and to give him an injection of an antipsychotic medication. George still remains in the hospital one week later. He is extremely distrustful of the staff and continues to resist treatment. George is therefore being covertly medicated on an ongoing basis by staff hiding medication in his food. He is becoming increasingly depressed and isolated, refuses to talk to anybody and shows no sign of improvement. 109 Exercise 4.3: Scenario on avoiding coercive
Scenario 1: George measures - 2 (b) What went wrong in this situation? 110 Exercise 4.3: Scenario on avoiding coercive Scenario 1: George measures - 3 (c)
Which of the CRPD rights were violated in Georges scenario? 111 Exercise 4.3: Scenario on avoiding coercive Scenario 1: George measures - 4 (d) What could have been done differently? 112
Exercise 4.3: Scenario on avoiding coercive measures 1: George (e) -Scenario 5 What do you think the outcome would have been if things had been done in a way that respected Georges will and preferences? 113 Exercise 4.4: A challenging situation -1 Scenario: Sorens story (a)
One morning, a young woman named Soren is brought to the local mental health service. She has tried to kill herself by jumping off a bridge, but police officers were present at the scene and they prevented her from killing herself. Soren tells the mental health worker that she still wants to end her life. She does not want any treatment and asks to be allowed to go back home, where she lives alone. Soren does not have an advance plan or directive. 114 Exercise 4.4: A challenging situation 2 Scenario: Sorens story (b)
Could you suggest positive actions that could be taken in the above situation to support Soren and avoid the use of involuntary detention and/or treatment? 115 Exercise 4.4: A challenging situation - 3 Scenario: Sorens story (c) a positive outcome At the service, the nurse in charge asks Soren what would help her at the moment. Soren says that having her sister to talk to about her distress would make her feel safer. Soren also explains that she has just lost her job and feels hopeless about how she can support herself in the future. The nurse says that, if Soren is willing, she will work with
her over the next weeks to find a solution to this problem and explore different options and resources for financial assistance and for finding another job. Sorens sister says that she can come and live with her until she feels better. The nurse also proposes to Soren that she can visit the mental health service two or more times a week to receive counselling and discuss other care and support options. The following week, Soren reports that she feels listened to, safe and supported now and is reassured that she is receiving the support she needs and wants from her sister and staff at the service. She is also continuing to explore other services and supports which are available to her in the community. 116 Exercise 4.4: A challenging situation - 4 Scenario : Sorens story (d)
What are your thoughts about the support Soren received in this case? 117 Exercise 4.4: A challenging situation - 5 Scenario: Sorens story (e) People should not be sent home by themselves without any offer of support. They should be provided with options for support which respect their rights. Includes support of someone they trust who can stay with/check on them. It means listening and sometimes thinking creatively and outside the box. Advance directives are useful to ensure peoples choices, will & preferences
in situations of high emotional distress. If someones preference is to be admitted and treated in the future and under certain circumstances (including against their wishes), they can state this in advance directive Ulysses clauses This should not detract from ensuring that all efforts are made to offer people noncoercive options. 118 Exercise 4.4: A challenging situation - 6 Neil Laybourn and Jonny Benjamin discuss mental health: https://youtu.be/GTURfplghls. 119
Concluding the training -1 What are the key points that you have learned from this session? 120 Concluding the training 2 Everyone has a right to legal capacity, and to make decisions concerning all aspects of life. Negative assumptions, stigma and stereotypes about people with psychosocial, intellectual or cognitive disabilities must be recognized, challenged and changed.
People CAN make decisions on all aspects of their lives (including about their treatment, where to live, and their financial and personal affairs). Treatment and recovery plans, respect for informed consent, supported decisionmaking and advance planning are all important measures to ensure that people are able to exercise their right to legal capacity on an equal basis with others. People with psychosocial, intellectual and cognitive disabilities have the right not to be detained in mental health and social services. They have the right not to be treated without their consent. Coercion is damaging to peoples well-being and alternatives should always be sought. 121 Acknowledgements (1)
122 Acknowledgements (2) 123 Acknowledgements (3) 124 Acknowledgements (4) 125
Acknowledgements (5) 126 Acknowledgements (6) 127 Acknowledgements (7) 128