Autonomy, choice and the importance of supported-decision making for persons with psychosocial disabilities: MHE Position Paper on Article 12 UN CRPD on legal capacity
Mental Health Europe,1 has put together this position paper on Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) to provide guidance to stakeholders, such as European States and the EU, on what legal capacity means to the lives of persons with psychosocial disabilities and how they can be supported to make decisions for themselves. Being denied legal capacity can mean being denied the right to make decisions in many aspects of life and as a result can negatively impact on a whole host of civil, political, economic, social and cultural rights. We outline key principles and criteria laid out in Article 12 and the General Comment of the Committee on the Rights of Persons with Disabilities (the Committee) on this issue including the need to move away from substitute decision-making on the basis of ‘best interest’ assessments, to supported decision-making which respects the ‘will and preferences’ of the person needing support. We also focus on specific forms of substitute decision-making which are disproportionately applied to persons with psychosocial disabilities such as forced placement in psychiatric units and hospitals and forced treatment which we believe are currently overused in many European States. These coercive measures can be traumatising and we recommend that States repeal their mental health laws and abolish the use of such measures. In their stead, we recommend the immediate investment in and development of viable alternatives and the provision of human rights training for professionals and users in order to ensure that mental health systems are consensual and free from the use of coercion.
We are now celebrating the tenth anniversary of the adoption of the Convention, however ten years on MHE notes that the shift towards supported decision-making has been slow and uneven, and that the EU has taken a backseat on this important issue. We hope that this position paper, which focuses on the barriers faced by persons with psychosocial disabilities, will inspire change and help Member States and the EU to understand what supported decision-making for persons with psychosocial disabilities can and should look like.
What MHE calls for in this position paper
Urges those European States that have not yet done so to begin reforming their capacity laws as well as other laws which are connected to the exercise of legal capacity (ie voting, family, mental health and banking laws), and move towards the creation of systems and mental health services which maintain the legal capacity of all persons with disabilities and develop supported rather than substitute decision-making regimes.
Urges mental health professional groups to consider how they can contribute to the immediate reduction and eventual eradication of the use of coercion in mental health services including by ensuring that ethical guidelines on informed consent are updated and brought in line with the UN CRPD.
Urges European States to immediately develop and provide real alternatives (like those outlined in this paper) to forced placement and treatment.
Recommends that European States collect disaggregated data, with the support of Eurostat, on guardianship, trusteeship and the use of forced placement and treatment including the number of times these measures are used and the reasons why.
Recommends that reforms in this area should be carried out with the meaningful participation of person with psychosocial disabilities, in line with Art 4.3 of the Convention, and accompanied by training for mental health care users and all professionals who might need it including social workers, health and legal professionals and law enforcement officials.
Calls on the European Commission to use its own voice as well as its leadership role to promote the shift towards supported decision-making, in line with recommendations received from the Committee on the Rights of Persons with Disabilities, including by adding a specific action point on autonomy to the Disability Strategy, following its midterm review which is currently underway, and accompanying it with specific action points on legal capacity
Promising legislation and supported-decision making models
- Proposed Bulgarian Bill – “Natural Persons and Support Measures Bill” Andalusian practice of Advanced Care Planning in Mental Health
- Personal Ombudsman Circle of Friend
- Therapeutic community support networks
- Open Dialogue
- Soteria Model
Many of us take for granted that we are autonomous and have the right to make our own choices. We don’t realise that the ability to make those choices is essential to living a full life in the community in which we can exercise our human rights. One of the most important principles underlying the UN CRPD is autonomy. From a human rights perspective, legal capacity – the right to make choices and be recognised before the law – is the key to ensuring autonomy and inclusion for persons with disabilities, and that they can enjoy their rights. However, almost ten years on from the adoption of the UN CRPD, the lived reality for many persons with disabilities, particularly those with psychosocial and intellectual disabilities, is that they are denied the right to make their own choices on the basis of their disability. Guardianship regimes are still the norm throughout Europe;2 these systems strip persons with disabilities of the right to choose and to make mistakes on an equal basis with others, and empower other people to make choices on their behalf. There is a direct link between exclusion of persons with disabilities from society and denying them their autonomy. The UN CRPD – which has been ratified by all but one Member States of the European Union, a majority of the Council of Europe and the EU itself- obligates States Parties to move away from substitute decision-making regimes, like guardianship or trusteeship, and instead to support persons with disabilities to exercise their right to make choices for themselves. As we celebrate the tenth anniversary of the UN CRPD, MHE is concerned that the shift towards providing supported-decision making has been slow with many European States failing to move towards real reform. This position paper urges Member States and the EU to take action, identifies criteria for UN CRPD compliant supported decision-making and outlines some promising models of supported decision-making specifically for persons with psychosocial disabilities.
Legal capacity and mental capacity – what’s the difference?
Article 12 of the UN CRPD states that States Parties ‘shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’. In 2014, following calls from Member States for clarification on Article 12, the Committee made it clear in its very first authoritative General Comment3 on legal capacity that mental capacity and legal capacity are different and distinct but often conflated concepts. Legal capacity, according to Article 12, is an inherent right owed to everyone whereas mental capacity relates to a person’s decision-making skills which varies from person to person and can often be subjective depending on how it is measured. The Committee pointed out that people with psychosocial disabilities are often denied legal capacity on the basis of a perceived or actual problem with their mental capacity or on the basis of their disability alone.
The denial of legal capacity – a civil, political, economic, social and cultural death
The effects of the denial of legal capacity have been compared to a ‘civil death’ by some commentators. Without legal capacity, a person lacks agency as a rights holder and lacks the ability to be recognised as a rights holder before the law. Denying someone their legal capacity can lead to their total disenfranchisement and exclusion from society and the effects of denial of legal capacity taken to their extreme could more accurately be described as a civil, political, economic, social and cultural death. Under full or ‘plenary’ guardianship regimes, persons with disabilities are open to abuse and
exploitation, and their rights to exercise the following civil, political, economic, social and cultural rights can be negatively affected:
- Access to justice (Art 13),
- Freedom from torture, inhumane and degrading treatment and violence, exploitation and
- abuse (Arts 15 and 16)
- the right to vote and participate in public life (Art 29),
- the right to liberty and security of the person (Article 14),
- the right to respect for one’s physical and mental integrity (Art 17),
- the right to marry and have a family (Art 23), reproductive and sexual rights (Art 23),
- the right to live independently and be included in the community (Art 19), the right to engage in cultural activities (Art 30),
- the right to healthcare on the basis of free and informed consent (Art 25), the right to liberty of movement and nationality (Art 18),
- the right to manage your financial affairs (Art 12.4),
- the ability to enter into contracts which hampers the right to work and even the ability to open a bank account (Article 12.5 and 27).
Will and preferences v best interests
In their General Comment on Article 12, the Committee stressed the importance of respecting the will and preferences of the person who needs support. The Committee noted that this key requirement is vital to ensuring a move away from the paternalism often displayed by ‘best interests’ assessments and the substituted decisions made on the basis of these assessments. Historically this approach has infantilised persons with disabilities and contributed to the paternalistic way in which they were treated which resulted, among other things, in mass institutionalisation and loss of autonomy. MHE believes that people who have problems with their ability to make decisions should be supported to make decisions based on their will and preferences in line with Article 12.
Forced placement and treatment as forms of substitute decision-making
According to Articles 14, 17 and 25 of the UN CRPD, persons with disabilities are entitled to their liberty, physical and mental integrity, and to freely consent to healthcare on an equal basis with others. However mental health laws, as well as other public health laws, across Europe allow for persons with psychosocial disabilities to be placed in psychiatric hospitals and to be restrained and treated against their will.4 The Committee has recommended that States, time and again, repeal legislation allowing for forced placement and treatment of persons with psychosocial disabilities.5 However, in their General Comment on legal capacity, the Committee has clarified that forced placement and treatment are also to be considered as violations of Article 12. The General Comment classified mental health laws, which allow for forced treatment, as discriminatory substitute decision-making regimes and notes that detention of persons with disabilities in institutions either without their consent or the consent of a substitute decision-maker is a violation of Articles 12 and 14.
Generally, the criteria under which a person can be denied their right to liberty and integrity of the person in mental health legislation, are as follows: a) the person has a mental health problem b) they are a ‘danger to themselves or others’, and c) there is a need for treatment (also known as therapeutic purpose).6 These decisions are often justified as being in the ‘best interests’ of the person concerned. However, the Committee’s Guidelines on Article 14 have further clarified that the ‘deprivation of liberty on the basis of actual or perceived impairment or health condition in mental health institutions which deprives persons with disabilities of their legal capacity also amounts to a violation of article 12 of the Convention’.7
Misconceptions about people with psychosocial disabilities and their treatment which are propagated by society as well as many mental health professionals has led to a situation where it is the norm, rather than the exception, in many psychiatric hospitals to compel persons with psychosocial disabilities to take a treatment. In some countries, they can be compelled to take treatment while living in the community.8 In addition to the above argumentation from the Committee, it is important to note that many of these forced treatments are based on a contested biomedical approach9 to psychiatry, and there is much debate within mental health services as to the validity of this model and the efficacy of psychotropic drugs. In MHE’s view, the biomedical model can reduce persons with psychosocial disabilities to ‘disorders’.10 This reductive approach can put in question the personhood and autonomy of persons with psychosocial disabilities, which in turn has a direct link to institutionalisation, and therefore to forced treatment. Indeed, despite the significant decrease of psychiatric hospital beds in Europe since the 1970s, many European countries still have more people living in institutional or long-term hospital settings than in the community as a result of a lack of community-based services coupled with the existence of guardianship regimes and misuse of mental health laws.11 We can therefore see psychiatric services where the denial of legal capacity in terms of treatment is inbuilt into the system.
Furthermore, the overuse of coercive measures occurs in spite of the existence of safeguards in a majority of European mental health legislation which require that such measures are only used as a measure of last resort when there are no other less restrictive alternatives.12 At MHE we believe that persons with mental health problems and psychosocial disabilities are experts on their own experiences and must play a vital role in their own care. Mental health as well as guardianship laws and the way in which they are currently abused deny this reality and have contributed to a power imbalance within the relationship between users of mental health services and their physicians. In light of the above, MHE is in favour of all mental health services and legislation moving towards totally consensual practices which are free from coercion and substitute decision-making in line with the UN CRPD.
MHE realises that this position presents challenges for the vast majority of services in Europe but also for the criminal justice system. Requiring all treatments and services to be based on consent will be impossible without more investment in mental health services with a particular need for increased resources, both human and financial. Without the crutch of coercion more time will be needed to fully explain treatments and to ensure that informed consent is given in every situation. One essential way to reduce the use of coercion is to give human rights training to mental health professionals, police and persons with psychosocial disabilities. Mental health professionals will also need to be trained in alternative ways to deal with situations in which persons with psychosocial disabilities are in crisis. For example, there are effective alternatives to forced placement including the use of mobile units within mental health services which help to avoid forced placement by supporting persons with psychosocial disabilities to stay at home even when they are experiencing a crisis.13
It is important to recall that despite societal misconceptions; evidence shows that people with mental health problems are not more likely to be violent than other people and in fact they are more likely to be victims of violence. However, sometimes people in mental healthcare services do exhibit violent behaviour or behaviour which may be perceived as violent just like people without psychosocial disabilities sometimes do and this is usually because of the way they are treated with force. What MHE does not want is a situation where individuals requiring more acute care are instead funnelled into the criminal justice system. There are helpful practices which can assist mental health professionals to de-escalate situations as well as help police and staff to recognise a genuine situation of danger versus a situation where a person with a psychosocial disability is in crisis. For example, one emerging practice which could be hugely beneficial is the development of 24/7 crisis intervention teams within the police but which have specially trained police working with mental health professionals and peers to recognise and respond to individuals who are experiencing a mental health crisis.
Furthermore, MHE is aware that many professionals and services users alike cannot imagine services which do not use forced placement and treatment but there is hope. There are effective alternatives (Open Dialogue, Soteria), which will be outlined below, that can help to reduce the use of hospitalisation, both forced and voluntary, and forced treatment by helping to maintain the right of persons with psychosocial disabilities to make their own choices with the help of therapeutic support networks. Having said this, we still need to search for alternatives which can deal with even the most severe cases where people are in crisis and put in place policies which will help European mental health systems move towards adopting policies and laws which ensure that services are consensual and maintain people’s autonomy, respect their legal capacity and support them to make decisions for themselves. Mental health professionals also have a role to play, and in cases where they are business owners a responsibility,14 in ensuring that they are not complicit in services and systems which infringe on people’s human rights. We therefore urge mental health professionals and their representative groups at regional and national levels to consider how they can contribute to the immediate reduction and eventual eradication of the use of coercion in mental health services including through self-regulation and by ensuring that ethical guidelines on informed consent are updated and brought in line with the UN CRPD.
MHE is calling for European States to reform their mental health laws and policies to ensure that they do not allow for forced placement and treatment on the basis of disability in line with the UN CRPD. We recommend that States invest in mental health services to ensure that they are free from coercion, including by developing alternatives and requiring human rights training for mental health professionals, as well as create mental health crisis intervention teams within the police.
What does real support look like?
Art 12.3 of the UN CRPD states that ‘States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’. In its General Comment, the Committee noted that States are legally obligated under the Convention to facilitate the creation of and provide access to such supports. Article 12 and the General Comment also provide guidance on what supported decision-making measures should look like and more specifically on the safeguards that should apply to such measures in order to ensure that they are not abused. On this basis, MHE has put together the following criteria relevant for successful supported-decision making for persons with psychosocial disabilities:
Supported decision-making measures should:
- be available to all, including those with high support needs, and tailored to their circumstances, o respect the person’s other rights as outlined in the UN CRPD including the right to privacy,
o maintain the person’s right to legal capacity and to make decisions which have legal affect,
o be based on choice and require the permission of the person requiring support and ensure that the person should be able to terminate or alter the support at any time,
o be accessible ie provided in a way that the person can understand and in a place they can access, o be able to be legally recognised,
o ensure that a person’s will and preferences are respected, o have safeguards which prevent abuse including ensuring:
- that there is no conflict of interest or undue influence,
- that a third party can verify who the support person is and allowing third parties to challenge the actions of the support person if he/she is acting contrary to the will and preference of the person with support needs,
- that the measure should apply for the shortest time possible,
- that the measure is subject to regular review by a competent, independent and impartial body or the judiciary.15
The Committee also gave more information about what forms supported decision-making can take and noted that such support could be formal and informal. They gave the following examples: the choosing of a support person by the person requiring support in the exercise of their legal capacity,the provision by banks of information in understandable formats which enable persons with disabilities to open accounts, enter into contracts or conduct transactions, advanced planning which can be particularly helpful for persons with psychosocial disabilities who may experience crisis situations and whose doctors, family member and friends could benefit from pre-prepared guidance which outlines their will and preferences.
Moving forward on legislation
The Fundamental Rights Agency of the European Union (FRA) stated in its overview of legal reforms in EU Member States that Article 12 ‘remains one of the areas with the largest number of reforms at the national level linked to CRPD ratification’.16 While some of these reforms have introduced supported decision-making, some of them conflate supported decision-making with substitute decision-making or continue to allow for the denial of legal capacity and substitute decision-making in certain circumstances.17 There is an acute risk that without the right training to legal professionals, including the judiciary, that where there is a choice between the two, substitute decision-making will prevail over supported decision-making due to outdated but pervasive misconceptions about persons with psychosocial disabilities and because it is easier and cheaper to apply as it does not require an individualised assessment.18 In addition, reform in relation to the particular forms of substitute decision-making in mental health laws allowing for forced placement and treatment are piecemeal and ensuring autonomy in relation to health is an area of the UNCRPD that States Parties find particularly difficult to implement.19
MHE urges those European States, particularly those with plenary guardianship regimes, that have not yet done so to begin reforming their capacity laws as well as other laws which are connected to the exercise of legal capacity (ie voting, family, mental health and banking laws), and move towards the creation of systems which maintain the legal capacity of all persons with disabilities and develop supported rather than substitute decision-making regimes.
European States should also collect disaggregated data on guardianship, trusteeship and the use of forced placement and treatment including the number times these measures are used and the reasons why. Furthermore, reforms in this area should be carried out with the meaningful participation of person with psychosocial disabilities, in line with Art 4.3 of the Convention, as well as accompanied by training for all professionals who might need it including social workers, health and legal professionals, and law enforcement officials. MHE hopes that the examples set forth below of promising legislation and supported-decision making will help Member States who are considering reform.
Limited competency -what can the EU do?
Primary responsibility for the implementation of the UN CRPD rests with Member States. However, in ratifying this treaty the EU committed itself to promoting UN CRPD compliant practices. While MHE is aware that the EU has a limited competency in relation to legal capacity, this competency still empowers it to support, coordinate and supplement the actions of Member States. In our view the EU has not used this competency enough to further change on this important issue. This is a view which was reinforced by the Concluding Observation of the Committee following its review in 2015 in which it recommended the EU to ‘step up its efforts’ in this areas as well as to ‘take appropriate measures to ensure that all persons with disabilities who have been deprived of their legal capacity can exercise all the rights enshrined in European Union treaties and legislation, such as access to justice, goods and services, including banking, employment and health care, as well as voting and consumer rights’.20
Apart from occasionally giving space to discuss legal capacity at the Disability High Level Group and other disability specific events, and funding some NGOs who work on the area, including MHE, we are not aware of how the Commission or the EU more generally are exercising their competency on legal capacity. Although MHE is appreciative of the support we receive from the Commission, we believe that the Commission should use its own voice as well as its leadership role to promote the shift towards supported decision-making including by adding a specific action point on autonomy to the Disability Strategy, following its midterm review which is currently underway, and accompanying it with specific action points on legal capacity.21 For example, the Commission could support the establishment of cross-national training programmes to educate the judiciary and medical professionals across Europe and financially support joint actions which could help Member States who are interested in implementing good practices on supported decision-making for people with psychosocial disabilities. The Commission could also encourage Member States to finance the work being done in this area by national NGOs and particularly service user organisations whose members are directly concerned by these issues.
Promising legislation and supported-decision making models
MHE has identified some promising legislation as well as specific forms of supported-decision making which are suited to persons with psychosocial disabilities which comply with most of the above-mentioned criteria. MHE would like to stress that the best services for persons with disabilities are those that are designed, developed and delivered with participation of all stakeholders including above all, persons with lived experience of mental health problems and would advise any stakeholder who is considering developing supported decision-making services or policies to use this working practice.22
Proposed Bulgarian Bill – “Natural Persons and Support Measures Bill”
In 2015, a new Bill was proposed by the Bulgarian Ministry of Justice to replace the existing guardianship law in order to align Bulgarian legislation with the UN CRPD. The Bill, if adopted, would establish various measures of support and protection which will enable adult persons with psychosocial or intellectual disabilities to exercise their basic human rights in accordance with their will and preferences.23 According to the Bill, any person is entitled to receive appropriate support from a supported decision-making body which must be registered and officially appointed by the Mayor of the Municipality in line with the ‘wishes and preferences’ of the person requiring support. A contract is then drafted between the support person and the person who needs support and they can also create a form of ‘advanced planning’ called a ‘preliminary declaration’.
If a ‘risk situation’ arises which is defined as a “serious and immediate risk to the life, health and property of the person”, the procedure differs and the support is established through the creation of a trusted ‘Council’ by the support person comprised of the person in need of support, relatives, close acquaintances and support bodies. The Council will be in charge of ensuring the best interpretation of the person’s ‘wishes and preferences’ in the decisions taken. Protection is safeguarded through the active role of the court as an independent body monitoring the relationship of trust and guaranteeing the rights of the person. In risk situations, if the trusted network makes a decision, it must be submitted to the court. The strength of this Bill is that it recognises legal capacity as an inherent right while providing for supported decision-making with robust safeguards. MHE believes that this Bill is one of the most compliant reforms in terms of legal capacity that has been proposed in recent years, however it also provides for co-decision making under vague circumstances and MHE would recommend clarification that this cannot be adopted against the ‘will and preferences’ of the person who needs support. Nonetheless we believe this Bill has potential to make a great difference to the lives of persons with psychosocial disabilities and we hope that it will be adopted by the Bulgarian Parliament in due course.24
Andalusian practice of Advanced Care Planning in Mental Health
In Andalusia, the Human Rights and Mental Health Group has developed a guide on Advanced Care Planning in Mental Health (ACP-MH), 25 designed using co-production between mental health care users and professionals in line with the UN CRPD. The guide is addressed to people interested in the process and to mental health service professionals. According to the Law 41/2002 on Patient Autonomy,26 professionals are legally bound to respect the directives for end-of-life care and, according to some jurists, mental health care.27 This model of Advanced Care Planning enables people to record their will and preferences in advance,28 this is then included in the medical record of the person and made accessible to all healthcare professionals in order to influence the health care provided in case they may face temporary inability to make decisions (ie crisis situations). The process and its application are at an early stage and the first objective is to train and sensitise professionals and users of the service with regards to the patient’s autonomy, their right to make their own decisions and the notion of will and preferences in line with article 12 of the UN CRPD. The ultimate objective is to ensure full respect of legal capacity and the right of choice in relation to healthcare through the application of the advanced directives by the professionals as well as to establish safeguards to protect the person and prevent abuses such as undue influence.
The Personal Ombudsman (PO) System was developed in Sweden and grew out of the psychiatric reform which took place in 1995. Under the scheme, a PO is defined as a highly skilled person who works on the commission of a person needing mental support services for a long period and is bound by a contract. The PO helps his/her client with a wide range of issues, ranging from family-matters to housing, accessing services or employment. The support is flexible and fully adapted to the person’s will and preferences, as no action is taken without the agreement of the client. This model has been designed for people with psychosocial disabilities who are potentially quite isolated and as a result would be ideal for those persons mentioned in the General Comment who do not have naturally occurring support networks in their communities including those who have been institutionalised for many years, have lost contact with their family or friends or have been excluded from the community for long periods of their life.29 The support can be stopped at any time at the request of the person needing support. This model enables persons with psychosocial disabilities to retain their legal capacity, make decisions and enjoy their life thanks to the support they receive and the trusted relationship they create with their PO. In addition, a five-year Government evaluation of the programme has shown that savings on traditional mental health care services increased each year with for one Euro invested, 17 Euros saved after five years.
The Circle of Friends
The Circle of Friends is a practice which gathers a group of trusted people, usually family and friends, chosen by the person requiring support who meet regularly in order to support a person to accomplish their personal goals in life.30 These goals are chosen by the person themselves and can include goals like finding a job or a place to live. This type of support network was first developed in Canada in order to empower persons with disabilities to evolve as well as to reinforce their independence. It ensures that the person will be able to make decisions for themselves and will be able to seek counsel if they wish to. Although not specifically designed for persons with psychosocial disabilities, this model, in MHE’s view, is a form of informal supported decision-making which is adaptable and suitable for persons with psychosocial disabilities who have naturally occurring support systems.
Therapeutic community support networks
The following therapeutic community support networks have been chosen as particular ways of enabling persons to maintain their legal capacity as well as their rights to liberty, physical and mental integrity, to live and be included in the community and to freely consent to treatment.
The Open Dialogue model, developed in Finland, is based on therapy meetings with a network which brings together the person with a psychosocial disability, their family, other natural supports, and any professionals involved.31 It promotes transparency in therapy planning and decision-making processes by enabling collaborative planning where each person is given a voice in the network meetings. It ensures the respect of the person’s wills and preferences and safeguards against undue influences. Such support enables the person to retain their legal capacity and to make the final decision on their treatment, etc. after exchanges and reflection within the group. The model has been successful in maintaining the autonomy of persons in crisis situations as it gathers the group within 24 hours of the beginning of the crisis and has led to a huge reduction in forced placement and treatment where it is implemented in Finland. However, it should be noted that the support network meetings are also effective in preventing the worsening of mental health problems, particularly if they are commenced at the outbreak of the problem. The support meeting can help the person in other aspects of life as well. It is also interesting that the use of Open Dialogue has some of the most impressive outcomes for persons experiencing psychosis.32
The Soteria Model was originally created in the 1970s to provide an environment and community of support for persons with a diagnosis of schizophrenia or persons experiencing psychosis.33 The model is based on a ‘recovery’34 as well as consensual approach and does not use coercive measures such as forced placement and treatment. Services are run by mostly non-medical personnel and use hardly any psychiatric drugs. The Soteria model also uses peer-support to help people to develop the skills they need to make decisions for themselves and live independently including budgeting, shopping, cooking and the importance of sharing space. Soteria services are an example of how mental health services can maintain the autonomy of persons with even the most severe psychosocial disabilities.