Restrictions on freedom in residential care. A legal status and human rights evaluation
Aim of this research
The aim of this PhD is to investigate the boundaries wherein restrictions on freedom in residential care in Flanders are permitted and to determine whether these boundaries and how they are regulated comply with what is to be expected from a human rights perspective.
Central aspects are the analyses of the human rights and legal status framework that apply to restrictions on freedom in residential care, and the evaluation of the legal status framework to the human rights framework. The human rights framework consists of the way wherein the Council of Europe and the United Nations deal with restrictions on freedom. The legal status framework consists of Belgian/Flemish legislation, jurisprudence and legal doctrine relating to this domain, supplemented by an empirical analysis of documents of care facilities that refine the internal legal status of the care user (e.g. house rules). For both frameworks, the emphasis is on three care contexts in three sectors: psychiatric hospitals in the mental health sector, facilities that provide long-term residential care in the care of persons with disabilities and residential care facilities in the elderly care sector.
The analyses and evaluation were carried out for the three themes that proved to be essential from a human rights point of view:  legal capacity, i.e. the way in which and the extent to which the law considers care users to be able to take decisions;  the external legal status, i.e. the way in which the admission and dismissal of the care user are arranged and  the internal legal status, i.e. restrictions that the care user may encounter during his stay at a care facility. Within the internal legal status, particular attention is paid to medical treatment, the use of restraints and freedom of movement. Other restrictions are dealt with in general terms.
The human rights approach to legal incapacity increasingly focusses on the restricting aspects of it. Because the expressions of will of the care user are not recognised, legal incapacity is not only a protection, but also a restriction on the user’s freedom. Such a restriction may be justified, but must be critically assessed. Particularly under the impetus of the United Nations Convention on the Rights of Persons with Disabilities, the emphasis is no longer on legal incapacity as an instrument of protection, but on maximising legal capacity. How far this should go, however, is subject of discussion. The UN Committee that oversees the implementation of the Convention rejects the traditional human rights approach that derives legal capacity from a care user’s cognitive capabilities. Moreover the Committee prohibits any form of representation that goes against the will and preferences of the disabled care user. No country in the world meets these requirements. Moreover, it is not clear how they should meet them, as the alternative proposed by the Committee is not sufficiently developed to give in to the questions that arise. In this study, the divide between the traditional human rights approach and the Committee's approach is softened by emphasising the common starting point and the similarities. Both approaches are only irreconcilable insofar as the lack of certain cognitive capabilities leads to legal incapacity and insofar as what the disabled care user wants can be overruled by what would be objectively in his best interest. How to deal with these two points requires further scientific research.
From a legal status point of view, there are various incapacity regulations in health care in Flanders, each of them with its own rules on representation. In addition to the traditional and formalised representation and the rules on representation for patients' rights, the care for the disabled and the elderly also have their own rules. These rather informal regulations offer a large scope for interpretation and little legal protection and are de facto a carte blanche that enables far-reaching substituted decisions on the admission to and treatment and care in a care facility. In addition, there is also a practice in which family members or the care facility represents the care user in the absence of a legal mandate.
The evaluation shows the need to provide a coherent model for legal incapacity and representation with sufficient guarantees for residential care users. This should be done in the short term. The guarantees must, in particular, address the risk that the care user is considered fully incompetent, and that as a result his expressions of will are considered irrelevant. Attention is also to be paid to support mechanisms that can postpone the intervention of representatives or that can better gear a representative’s decision to the will and preferences of the care user. In the longer term, the Convention on the Rights of Persons with Disabilities may prompt to a more thorough reform. How such a reform should look like is difficult to determine given the current uncertainties on the Convention’s interpretation. A trend towards informal and flexible representation seems likely. This poses challenges in terms of protection. Future research on the right to legal capacity will undoubtedly lead to results that are contrary to existing basic assumptions and are therefore worthy of a normative debate and a search for a social basis.
External legal status
On a human rights level there is an unambiguous framework for assessing, firstly, whether a stay in a care facility amounts to a deprivation of liberty and, secondly, whether such a deprivation of liberty is justified. This framework can be used not only to evaluate forced admissions, but also admissions that are de jure voluntary while de facto the care user is deprived of his liberty as he is confined in a restricted space without any valid consent.
Regarding legal status, the analysis uncovered that the law that governs forced admissions is defective on two points. Firstly, there is insufficient thought and protection for people with an intellectual or psychogeriatric disability. For them, a ‘voluntary’ admission is often the only option. Secondly, not all the conditions for a forced admission are clear. In particular, it is uncertain how the law that governs forced admissions relates to the laws on the representation of legally incapacitated care users, while this is precisely what is essential from a human rights perspective. Attention should be paid to de facto deprivations of liberty in voluntary care. To do so, the binary distinction between voluntary and forced admissions needs to be reviewed. Law and legal doctrine should shift their attention to the grey zone in between, in which the decision to be admitted to a care facility is taken by a representative. The unclear scope of the law on forced admissions facilitates these substituted decisions.
The evaluation unveils that substituted decisions lead to admissions, even where this would amount to a deprivation of liberty. In the current legal status the boundary between a voluntary admission and a de facto deprivation of liberty is difficult to control. It is not impossible, and even probable, that care users whose admission is de jure voluntary are de facto deprived of their liberty. These deprivations of liberty would not be problematic if they were justified. However, this is often not the case. In order to avoid unjustified deprivations of liberty, it is necessary to monitor this grey zone. This presupposes that all admissions that are not based on the consent of the care user himself, must be assessed by an independent body. In addition, the essential criteria (e.g. competence and opposition) should be clarified. Finally, the evaluation raises questions regarding the future of the law on forced admissions. Where an extension to persons with disabilities and the elderly is desirable in the short term, the question arises – again under the impetus of the UN Disability Convention – as to whether the current law is future-proof. As the admission does not correspond to what the care user wants or would have wanted, the law is under pressure. If it is considered desirable to act against the wishes of a care user, then it is necessary to look for a criterion that is disability-neutral. For the time being, there is no such criterion.
Internal legal status
Human rights require that restrictions on freedom during the stay at a care facility are applied within the boundaries of a legal framework that it is sufficiently clear to the care user on when and how restrictions (can) take place. In addition, restrictions must strike a balance between the autonomy of the care user and other interests, and must be coupled with sufficient guarantees. As the impact of a restriction increases, the interpretation of each of these requirements is stricter. Particularly when the liberty (e.g. in the case of a far-reaching restriction on the freedom of movement) or the dignity (e.g. in the case of restraints) of the care user is compromised, strict requirements apply.
The current legal status of care users in Flanders does not provide sufficient protection, nor for users nor for facilities. Often, specific rules are lacking and the application of the general rules leads to inconsistencies and ambiguities. Many restrictions on freedom are not regulated, which implies that they are usually not permitted. When they do occur, they are often based on questionable grounds (such as a (substituted) consent or a broad interpretation of legal necessity) or they take place beyond what is legally permitted. In Flanders, there seems to be an erroneous premise that because restrictions are not regulated, they are implicitly permitted. The opposite is true: restrictions on freedom in care interfere with fundamental rights. Without a legal basis such interferences are prohibited.
In an evaluation the only conclusion possible is that restrictions on freedom that are based on a legal basis that is not made for it or on no legal basis at all, are not justifiable. Care facilities should align their policies with what is permissible. It is unacceptable, not only from a legal status point of view but also from a human rights point of view, to apply restrictions on freedom outside of the legal framework. Moreover, such an application leaves not only the care user but also the care facility vulnerable. Many of the documents supplied by care facilities impose further restrictions than what is legally permitted; a revision of the house rules and the development of a policy aimed at individualisation are important tasks in this respect. In addition, the law should be amended so that the restrictions on freedom that are considered acceptable are regulated. The law should make restrictions as forseeable as possible and should provide for workable mechanisms to monitor their application. Regulating restrictions is the first step towards their reduction. It is only possible to tackle unacceptable restrictions on freedom when it is possible to distinguish acceptable from unacceptable restrictions.
With regard to practice, this research reveals that the application of restrictions on freedom should be aligned with the current legal status. This requires knowledge on and attention for this legal status, and in particular its application on legally incapacitated care users. They are particularly vulnerable due to the way legal capacity on the one hand and restrictions on freedom on the other are regulated. Attention should be paid by judges and policymakers as well as by facilities and care-professionals. Certain practices that are common - in particular on representation on admission and on the application of restrictions on freedom on the basis of an unclear or too broadly interpreted legal framework - should be refrained from.
With regard to regulation, from a human rights perspective, certain legislative changes are desirable and even necessary. In the short term there is a need to standardise the rules on representation and to specify the essential criteria for their application. With regard to the external legal status, additional supervision is needed for voluntary admissions that are likely to constitute a deprivation of liberty. In addition, the current lack of legislation on forced admissions of older people and people with disabilities needs to be reconsidered. With regard to the internal legal status, a legal framework for restrictions on freedom is strictly necessary. It is not enough to regulate the principle of autonomy and leave the exceptions to practice. It is to the legislator to determine which restrictions are acceptable on which conditions. In the longer term, the law faces even greater challenges. These challenges derive from the United Nations Convention on the Rights of Persons with Disabilities. According to this convention and the interpretation given to it, the mental capacity of the care user is no longer an essential criterion on which restrictions on freedom can be based. As a result, the way in which legal capacity is regulated, forced admission is decided upon and restrictions on freedom in care are implemented is under pressure.
With regard to legal research, further research into the Convention on the Rights of Persons with Disabilities is required. Although this study incorporates this Convention to the fullest extent possible, the exact consequences of this new approach remain unclear. For example, it is likely that forced admission as it currently exists will have to disappear. However, a workable alternative is not yet available. Further research is needed into the exact boundaries of the social model of disability and the remaining scope for restrictions on freedom. Once these boundaries and scope are known, a thorough evaluation of the normative principles of welfare and healthcare law is required. Furthermore, practice-oriented research into (and scientific communication on) the role of care facilities in regulating restrictions on freedom is necessary.