This chapter is centred on the tension between public funding and public health, and on how decisions about resource allocation can shed light on the state’s intention about practices to select against disability. This is particularly relevant in relation to the broader analysis of eugenics in this book, because a eugenic intention might seem more likely if there is a state intention to avoid the higher costs of health and social care for disabled people. Although the mere fact that the parents of disabled children bear additional costs might not be sufficient evidence of eugenics, a more revealing examination of the state’s intention can be made through a comparison of different funding decisions. The chapter also examines two areas of decision-making where cost calculations might be relevant: in relation to decisions about public funding for the prenatal detection of Down syndrome, and to decisions about the treatment of very ill infants. While explicit cost–benefit analysis might seem to be ethically unacceptable, this analysis could nevertheless be an implicit consideration, and the concealment of this consideration could constitute a form of manipulation.

This chapter analyses the law in two areas that relate to prenatal selection, with the aim of critically evaluating what ‘messages’ the law might express about disabled lives, and about the state’s position: first, the law on abortion on the grounds of disability under the Abortion Act 1967, and second the law in the United Kingdom on preimplantation genetic testing (PGT). In the first case, it is argued that the disability ground in the law on abortion is not primarily protecting reproductive autonomy, but rather reflects a negative view about the value of disabled lives. In the second case, it is argued that the identification of approved conditions for PGT does not reflect a neutral approach to the definition of disability, and that the legal regime includes elements of state coercion. The chapter also examines a third area which does not relate to prenatal selection, but which might shed light on the state’s position about the latter: court decisions about the treatment of very ill infants. Here, there are reasons to think that interpretations of the best interests of the child do not, in fact, necessarily only take into account the interests of the child.

This chapter analyses the indirect judicial application of the Convention on the Rights of the Child (the Convention) in Australia, which is a federal state of dualist tradition. The chapter demonstrates the vulnerability of the Convention in a system of parliamentary supremacy where the Convention is not legislatively incorporated and where the Parliament can make laws contrary to it. In this context, the traditional methods of engaging with the Convention have yielded limited results where there was tension with the domestic law, but were more impactful when there was convergence between the two sets of norms, as seen in the family law context. The Convention is also weakened by the absence of a federal human rights statute. The case study of the application of the Convention by the Supreme Court of Victoria shows that human rights statutes that contain child-specific provisions facilitate the judicial application of the Convention. The chapter also illustrates the creativity of the courts, which occasionally engaged with the Convention in sui generis ways, not explicitly acknowledged as formal methods of engagement.

Drawing from the case studies on the judicial application of the Convention on the Rights of the Child (the Convention) in France, Australia, South Africa, and the United Kingdom, this chapter argues that albeit fundamentally different in form, the direct and the indirect application of the Convention, respectively, produce similar effects. Both permit a meaningful engagement with the Convention and the development of child-sensitive reasoning. The chapter highlights that alongside the traditional methods of engagement with the Convention, courts have applied it in a sui generis manner. This demonstrates that the traditional reception rules are unable to capture the diversity of courts’ interaction with the Convention. The chapter discusses the factors that influence the courts’ application of the Convention and highlights the importance of the domestic structure of reception for the judicial application of the Convention. The chapter also concludes that article 3(1) of the Convention has been a favourite of the courts, who see it as a rich repository of legal principles and standards that allow them to justify a distinct legal treatment for children.

This chapter analyses the indirect judicial application of the Convention on the Rights of the Child (the Convention) in the United Kingdom, a dualist legal system where the Convention has not been fully incorporated through legislation. Although the courts have somewhat engaged with the Convention through the traditional methods (statutory interpretation and the development of the common law), the Convention has been given effect overwhelmingly in the context of the Human Rights Act 1998 (the HRA), and implicitly of the European Convention on Human Rights and Fundamental Freedoms 1951 (the ECHR). The joint application of the Convention with the HRA–ECHR tandem has been both a facilitating and an inhibiting factor in the judicial effect of the former. Like courts in other jurisdictions, UK courts have also applied the Convention in sui generis ways, diversifying thus the opportunities for its usage. The overlap between the Convention and other legal standards makes the assessment of its impact difficult, but it is clear that the application of the Convention is associated with a more child-sensitive judicial reasoning.

The chapter analyses the judicial application of the Convention on the Rights of the Child (the Convention) in South Africa, which is a hybrid legal system with both monist and dualist features. The largely successful judicial application of the Convention has been facilitated by the country’s constitution, which contains a provision on children’s rights and generous provisions regarding the judicial application of international treaties. The chapter shows that courts favour the application of the Convention as an interpretation tool for the children’s rights clause in the Constitution, but they neglect other possibilities of engagement, such as self-execution or statutory interpretation. This has resulted in lost opportunities to give judicial effect to the Convention. Courts also engage in sui generis forms of application, which has diversified the means of its application. The impact of the Convention is sometimes difficult to discern because of its overlap with domestic instruments. Nonetheless, the Convention has demonstrated its value added when gaps were found in the domestic law, although most often the influence of the Convention has been subtle and diffuse.

This chapter analyses the direct application of the Convention on the Rights of the Child (the Convention) by the Court of Cassation and the Council of State in France, a monist state that has not passed legislation to incorporate or transform the Convention domestically. The chapter highlights the historical contentiousness of the direct application of the Convention, the different approaches taken by the two supreme courts, and the positive impact of the direct application of the Convention once this became more widely accepted. The chapter argues that the direct application of Convention articles gives them a quasi-constitutional status, and permits their mainstreaming into decision-making. It also shows that the direct application of the Convention, and especially of its article 3(1), has added value to judicial reasoning in relation to children. The chapter demonstrates that, contrary to other views, the direct application of the Convention by courts depends to a large extent on factors independent of it rather than on its intrinsic features, such as the alleged weak remedial framework, the generality of its terms, or the formulation of its articles.

This chapter reviews the Mental Capacity Act (2005), and Deprivation of Liberty Safeguards (Liberty Protection Safeguards). It reviews how to assess capacity, using the two-stage test, followed by when it is appropriate to undertake best interests meetings. Some of the main decisions are reviewed which are likely to be relevant to people with dementia, such as care and residence, managing finances, and deciding on medical treatment.

This chapter will explore how the provisions governing best interests assessments ought to be reformed so as to better ensure that an agent’s authentic desires are being prioritised in decisions being taken about them. The starting point should be that the assessor ascertains ‘so far is reasonably practicable’ the individual’s wishes, feelings, beliefs, and values. This should then be supplemented by a presumption that the agent’s wishes and feelings will be determinative of what is in their best interests, except when giving effect to them will expose the person to a risk of significant harm. Even where the harms are significant, however, there will still be occasions where the agent’s wishes and feelings should nonetheless take precedence; where to do otherwise would involve frustrating their deeply and authentically held beliefs, values, or commitments. This chapter will highlight some of the potential considerations which ought to guide assessors in these circumstances. It will propose that assessors be provided with a list of factors that they must take into account when determining the degree of weight to be ascribed to the agent’s wishes, which reflect these considerations.

The Introduction summarises the core themes of the book and outlines how the argument will proceed over the course of its chapters. It explains why the issue it centres around – namely, how the law grapples with the impact of mental disorder on decision-making – is so important, and why successfully navigating the tension between respect for (and deference to) idiosyncratic values, and protection from disorder or impairment, must be a precondition of England and Wales adopting ‘fused’ mental capacity and health legislation, or a more CRPD-compliant statutory framework. It also explains how the book relates to the existing literature in this area, which has focused in recent years on concerns about the binary nature of the capacity framework, and on the individualistic and rational ‘liberal subject’ on which this framework rests. Finally, it elaborates briefly on some of the concepts which the book will draw upon, in particular what is meant by ‘values’ and ‘beliefs’.

The foregoing discussion has highlighted the fundamental fragility of assessments of capacity, which hinge on a series of complex yet unavoidable clinical judgements about the person’s cognitive capacities and the origins of the beliefs or values that motivate their decision. This chapter will explore the implications of this for best interests assessments and, in particular, the extent to which due weight is currently being given to the person’s authentically held values and beliefs in the assessment of their best interests. Drawing on case law, interviews, and post-legislative scrutiny of the Mental Capacity Act, it will conclude that despite a number of empowering court decisions, the lack of direction contained in the Act on how to apply the MCA has still resulted in different weight being attributed to the agent’s wishes. Moreover, the trend towards greater empowerment has not yet trickled down to decisions being taken on the ground by doctors and care workers, which still remain characterised largely by paternalism and risk aversion. Those undertaking best interests assessments could therefore benefit from a more unified starting point and greater clarity on the factors which ought to influence the degree of weight accorded to the individual’s wishes.

Chapter 2 explains the historical and contemporary policy, legal and human rights contexts for decision-making by, with and for adults with cognitive disability. It describes the dominant narrative in the literature as depicting a journey from paternalism to autonomy, from exclusion to inclusion, and from discrimination to equality, aligned with three widely recognised models of disability – the charity, medical and social models. It explains that the book’s interpretation of Article 12 is founded on the acceptance of a social model of disability that acknowledges the residual impacts of impairment. The chapter explains the limitations of arguments favouring an interpretation of Article 12 as requiring that decision-making by substitutes be abolished. Such arguments privilege autonomy at the expense of other important human rights values and privilege the civil and political right to legal capacity over other civil, economic, political, social and cultural human rights.

The Mental Capacity Act (MCA) 2005 came into force in 2007 and covers England and Wales. It provides a statutory framework for anyone over the age of 16 who lacks capacity to make decisions for themselves, for whatever reason. The MCA was drafted by the Law Commission partly in response to the increased prevalence of dementia and the lack of legislation to deal with the challenges of so many people living longer and losing their ability to make decisions. It is the loss of ability to make decisions, because of the disease, which makes the key link between providing care and treatment with the application of the law. This is why the MCA is perhaps the most important of all the pieces of legislation we consider. The practical applications of the Act will be dealt with in more detail in the chapters to follow. More detailed guidance can be found in the Mental Capacity Act 2005: Code of Practice (for England and Wales), revised in 2022. We include some of the main amendments to the Code at the end of this chapter and these are also covered in the relevant sections of the book.