Impact case study database

Harding has directly shaped state law and policy on legal capacity, including by drafting sections of key codes of practice that affect millions of lives (impacts 1–3). Her research has also been used by professionals seeking to operationalise supported decision-making (impact 4), by civil society and self-advocacy organisations (impact 5), and by barristers seeking to protect people’s rights to intimate lives (impact 6).

1) Changed the course of the Mental Capacity (Amendment) Act reforming the Deprivation of Liberty Safeguards and influenced the implementation of this law.

Amendments to the Mental Capacity (Amendment) Act 2019 (‘the Bill’) were shaped by Harding’s research on legal capacity [R2, R3, R5; E3]. The Bill replaces the current Deprivation of Liberty Safeguards under the Mental Capacity Act 2005 (MCA) with the new Liberty Protection Safeguards (LPS). It is expected to come into force in 2022. While the Deprivation of Liberty Safeguards process applies to over 300,000 individuals, the new LPS process will apply to more people, as it includes care arrangements in the community as well in hospitals and care homes.

At consultation stage, Harding identified problems with the Bill including a proposed new statutory definition of “deprivation of liberty”, an inappropriately expanded role for care home managers, and inadequate safeguards to protect against conflicts of interests. Harding submitted written evidence on the Bill to the House of Commons Public Bill Committee and provided a policy brief for members of the House of Lords. A section of this brief was quoted by Baroness Tyler in February 2019, during the Lords’ debates on the Commons amendments [E4]. At a private meeting with the Bill team in March 2019, Harding advised Peers on how to respond to Government amendments. According to Baroness Tyler, this ‘influenced Ministerial thinking’ and shaped the final form of the Bill [E3], resulting in significant changes including the introduction of additional safeguards against conflicts of interest and changes to how “deprivation of liberty” is defined in the new LPS. Also, the contested definition of deprivation of liberty was removed from the Bill; instead the current definition in the MCA was retained, and this definition is now explained in the statutory Code of Practice to enable flexible interpretation and regular review [E4]. Finally, in November 2020, the Department of Health and Social Care announced that the elements of the Bill relating to the role of care home managers would not be implemented.

2) Co-produced new legal guidance for the application of mental capacity laws, better safeguarding the rights of intellectually disabled people

Harding (i) co-produced the new Liberty Protection Safeguards Code of Practice and (ii) revised parts of the Mental Capacity Act Code of Practice. She also advised that both codes be combined, to better protect the rights of people with disabilities.

(i) Crucial parts of the new LPS Code of Practice —that relate to the definition of deprivation of

liberty (part 1 of the code) and “Keeping the Person at the Centre” of these processes (part 2)

—were co-produced by Harding [E10]. As an invited member of the Department for Health and

Social Care Liberty Protection Safeguards Code of Practice co-production group (2019),

Harding helped draft chapters 4, 5, 6, 7, 8, 10 and 11 (Part 2) [E10]. For instance, Harding’s

findings on supported decision-making [R3–R6] were used to develop guidance in draft

Chapter 4 on supporting people to make decisions and express their views about residence

and care plans [E10].

(ii) In February 2020, Harding was directly consulted by the Ministry of Justice (MoJ) Mental Capacity Policy Division on parts of the MCA Code of Practice that relate to research with people who lack capacity (Chapter 11). For example, Harding provided the MoJ with amendments incorporating legal changes since the 2007 publication of the Code of Practice, and detailing what should happen if a participant loses capacity during a research project. In addition, she drafted practical scenarios on how to involve intellectually disabled people in research. These amendments and scenarios will form part of the revised MCA Code of Practice [E5].

Harding argued strongly for a combined Code of Practice for the MCA and LPS in her response to the MoJ consultation on the MCA Code of Practice. In February 2020, the Department for Health and Social Care announced its decision to integrate both Codes of Practice. Over two million people with limitations to their capacity are directly impacted by the separate codes, but the combined Code will also affect the much wider group of those caring for, supporting, and conducting research involving intellectually disabled people. The combined Code will be published for consultation in Spring 2021, having been delayed by the coronavirus pandemic.

3) Shaped law reform and policy development on wills at the Law Commission of England and Wales (the ‘Commission’)

Harding influenced the Law Commission’s consultation on wills, particularly the operation of the best interests principle in the making of statutory wills, and shaped its provisional policy on supported will-making.

This impact followed discussion with the Commission at a 2016 private meeting, after which Harding’s research [R1] was positioned in the Commission’s consultation paper on wills as the leading critique of the current rationale for statutory wills, and operation of the best interests principle [E1]. The Commission engaged with Harding’s arguments that the courts take an incoherent approach to the making of statutory wills, and that statutory wills require reform [E1, E2]. Law Commissioner, Professor Hopkins stated: ‘While we ultimately reached the provisional conclusion that reform is not required to the “best interests” rationale, Professor Harding’s article “The rise of statutory wills and the limits of best interests decision-making in inheritance” [R1] was influential in our consideration of the issue and is referred to extensively in Chapter 3 of our Consultation Paper’ [E2].

Harding’s work on supported decision-making [R3] led to further collaboration with the Commission on policy development related to supported will-making. In particular, Harding was commissioned by the Commission to conduct empirical research into the experiences of intellectually disabled people when making wills [R6]. The Commission publicly acknowledged this as having influenced its policy decisions on improving support for intellectually disabled people to make a will [E1]. Law Commissioner, Professor Hopkins, stated the research ‘provides important insights into the experiences of people with intellectual disabilities in making wills and, when we resume our work on wills, will provide an invaluable evidence-base to the Commission in assessing a potential scheme for supported will-making and in determining how a scheme could work’ [E1, E2]. It was key in the Commission’s recognition of a need for supported will-making and will shape the Commission’s proposals on supported will-making and testamentary capacity in their forthcoming report on the law of wills [E1, E2]. These changes to the law will make a difference to the lives of over three million people with impaired capacity in England and Wales, enabling more intellectually disabled people, and people living with dementia, to express their testamentary wishes.

4) Transformed professional practice and engagement with the right to legal capacity and supported decision making

Professional and civil society organisations have changed their practices and training relating to supported decision-making as a result of Harding’s research. Examples include:

• directly influencing the training programmes of civil society organisations. For example, Harding was consulted by CHANGE, a learning disability charity, and Advonet, an advocacy charity, to input into a training programme for people with learning disabilities and for health and social care professionals in how to support decision-making [E9];

• designing and delivering sessions on supported decision-making for advocates supporting people making decisions in their lives (National Advocacy Conference, 2018) [E9] and for best interests assessors (CPD training day, 2018) [E9];

• contributing to a CPD webinar for Finders International on supporting vulnerable clients which was viewed by over 300 private client legal professionals (2020);

• giving guidance to practitioners via prestigious lectures, including: a keynote address at the Head First conference (2018) with a mixed audience of over 500 attendees working in the field of brain injury as well as those directly affected by brain injury; a plenary presentation at the National Mental Capacity Forum Action Day (2018) with 300 attendees [E9]. Audience feedback highlighted the importance of empirical, socio-legal research for professional practice development [E9];

• engaging extensively with civil society organisations and self-advocacy groups to increase their knowledge and understanding of rights to legal capacity and supported decision making. In particular, Harding participated in workshops for organisations including Mencap, Headway, People First, and the Down’s Syndrome Association (DSA). She also contributed an accessible version of her research findings to the DSA Journal (2018) [E9];

• collaborating with health and social care professionals, for example through co-authoring a CPD contribution for BJPsych Advances, a professional journal for psychiatrists, on legal developments in testamentary capacity and statutory wills [E9].

5. Improved public awareness and understanding of disability and human rights

Civil society organisations used information and tools provided by Harding to protect the rights of intellectually disabled people. For example:

• Harding supported a West Midlands charity (Changing Our Lives) and its employees to understand capacity law and Court of Protection practice, and assisted their work as advocates for intellectually disabled people seeking to move out of long-term segregation in hospital units. As Trustee Harding has shaped the charity’s strategy on deprivation of liberty and the right to legal capacity by widening the evidence base of its (confidential) work on the NHS ‘Transforming Care’ agenda [E6].

• Harding set up the Capacity Law and Rights Information to You (CLARiTY) project to provide accessible legal information [R6] and address the unmet legal needs of disabled people and family carers during the coronavirus pandemic. This project involves Wolferstans solicitors, Bringing Us Together (a community interest company led by family carers of disabled people), and a leading disability consultant. CLARiTY facilitated two interactive accessible legal information sessions for people with learning disabilities and family carers (October–December 2020), covering lockdown rules about visiting family and friends in care homes and hospitals (Session 1) and supported decision-making, best interests decisions, do not resuscitate notices, and support with developing relationships (Session 2). Attendance was limited to 50 per session to enable inclusive and accessible discussion, but summaries were published online. Participants commented on how useful the sessions were, in particular the ‘supportive environment’ and ‘people’s stories that brought the law to life’ [E7]. By 31 December 2020, the online summaries had been accessed by 893 unique visitors, with traffic to the site as a whole increasing from 138 unique visitors per month in September 2020 to 2,493 unique visitors per month in December 2020 [E7].

6) Influencing legal argument and case law about sexual intimacy and legal capacity in everyday life

Leading barristers have challenged the constraints placed on care professionals who support intellectually disabled people to develop intimate relationships by utilising Harding’s research [R4]. This impact arose following the decision in Lincolnshire County Council v AB [2019] EWCOP 43 that care workers should not support intellectually disabled people to access sex workers for public policy reasons. Harding offered access to a pre-print of R4 on social media, providing a timely and accessible analysis of the interaction between the Sexual Offences Act 2003 and the MCA 2005, and warning of the potential for oppressive precedents which treat disabled people differently from non-disabled people. 14 requests for the piece were received from barristers, solicitors, and social workers. Two barristers who requested the pre-print cited it in their skeleton argument [E8] in a December 2020 Court of Protection case before Justice Hayden (Judgment pending). They were arguing on behalf of an intellectually disabled man who has capacity to consent to sex, and to purchase sex, and who wished to access sexual services through a charity. The question for the court was whether care workers offering support with choosing an escort or with accessing money to pay for sexual services would be committing a criminal offence under the Sexual Offences Act 2003. The two arguments from R4 cited in the skeleton argument concerned the constraints posed by the Sexual Offences Act 2003 relating to care professionals supporting intellectually disabled people in developing intimate relationships.

Freedman and Lemay-Hébert were instrumental in changing the UN policy on accountability that in effect barred victims of the cholera epidemic in Haiti from seeking redress. This was achieved through coordinated policy engagement and legal challenge with the legal representatives of the victims, NGOs, diplomats, and key interlocutors

1. Challenged in court UN policy on absolute immunity (in collaboration with the Institute for Justice and Democracy in Haiti).

This impact was achieved by working with the Institute for Justice and Democracy in Haiti to challenge in court UN policy on absolute immunity. This occurred due to the UN’s refusal to acknowledge responsibility for the cholera epidemic (killing over 10,000 Haitians and infecting nearly 1 million) despite evidence to the contrary. Freedman made influential pro bono contributions to the lawsuit brought by IJDH in October 2013 ( Georges et al. v. United Nation) [E1]. Lawyers, scholars, NGO practitioners, international agencies, and former UN mandate holders all used Freedman’s research on the UN’s claim to absolute immunity [R1] in an amicus curiae brief, submitted in May 2014, which she co-signed [E1]. This was resubmitted to the Court of Appeals in 23 February 2016.

The specific challenge failed in the US courts, but it helped to elicit a new willingness from the UN for a resolution outside of court. In a statement released by the Secretary-General on the 19 August 2016 (a day after the court decision), he describes both regret and a moral responsibility of the UN and international community to eliminate cholera, and he states that he is “actively working to develop a package that would provide material assistance and support to those Haitians most directly affected by cholera” [E10]. Such willingness represented a reversal of the UN’s original standpoint in the aftermath of the legal challenge.

2. Transforming UN policy on responsibility for the cholera epidemic in Haiti.

Having demonstrated that a rights-based approach was needed to solve the Haiti cholera crisis [F2], Freedman and Lemay-Hébert designed a resolution framework that would be acceptable to the UN, Member States, and the Haitian victims. It was to serve both as a campaign tool to engineer the policy change in the UN and as a guide to UN actions on reparations in Haiti.

Freedman and Lemay-Hébert convened a Resolution Summit at the University of Birmingham in December 2015, which provided an opportunity for high-level officials (including of the UN) to engage with the research and discuss a resolution framework. The agreed framework called for three elements: an apology from the UN to the people of Haiti, preventive measures to avoid future deaths and suffering, and financial compensation for the victims [E2].

The three-part resolution framework was used to trigger a change of the UN policy. It was utilised by NGOs, Member States of the UN Security Council (UNSC), and the Special Rapporteur on extreme poverty, even though the UN’s refusal of responsibility seemed entrenched. Freedman, Lemay-Hébert, and NGOs (such as IJDH and Partners in Health) lobbied Member States in the Security Council with the framework, thus equipping representatives with a research-based human rights argument for reparative justice, and encouraging a coordinated approach to raising the issue. Representatives considered the framework to be the first draft of a political resolution and were encouraged by the possibility of an alternative to legal measures that were underway at the time. The research-based framework was taken up by representatives to develop proposals in advance of a crucial review of MINUSTAH of 17 March 2016, where they compelled the UNSC to do more to eradicate cholera and to support the people affected [E6]. As the Deputy Chief Medical Officer of Partners in Health (a participant at the Birmingham Summit) has since corroborated, the “framework has been used by States, the UN, and independent experts as the basis of how to move forward” [E3]. As a result of the lobbying, 17 out of 21 representatives who spoke at the UNSC raised the issue of cholera in Haiti [E6]. Peru and Saint Vincent and the Grenadines spoke on behalf the Group of Friends of Haiti (11 states) and CARICOM (14 states) respectively, expressing unanimous support for a change in UN public policy concerning cholera in Haiti [E6].

Finally, the recommendations contained in their first joint research [F1–F4] as well as those from the Birmingham Summit [E2], were cited extensively in the report of 26 August 2016 by the Special Rapporteur on extreme poverty and human rights. The report was debated at the UN General Assembly and criticised the handling of the cholera epidemic, in particular “the refusal to address the human rights violations that have occurred […] as a result of the cholera epidemic” [E4]. It also pushed for the Secretary-General to change his position on the issue using the three-part framework as a recommendation for a new policy [E4]. The Rapporteur acknowledged the researchers’ roles, stating that: “the framework that was produced at the Birmingham workshop has informed the approach taken in terms of the three aspects needed to resolve the disputes” [E5].

Through the combined approach of influencing the campaign of IJDH and equipping policy makers with critical research-based evidence for reparations, Freedman and Lemay-Hébert were successful in stimulating high-level political debate about victim-centred reparative measures for the people of Haiti. In doing so, the approach also carves out a new mechanism for holding international organisations to account through a human rights matrix. The longer-term ramifications of this for public policy and legal accountability are likely to be significant.

3. Reversing and shaping UN public policy on reparations in Haiti.

In December 2016, after years of inaction, the UN fundamentally changed its position on reparations in Haiti and implemented a new policy as a result. The new approach is underpinned by recommendations stemming from Freedman and Lemay-Hébert’s research and their three-part framework [F4-E2]:

(i) Issuing a public apology to the people of Haiti.

On 1 December 2016, the Secretary-General apologised to the people of Haiti, accepting that the UN “simply did not do enough with regard to the cholera outbreak and its spread in Haiti” and expressed a “moral responsibility” to eliminate cholera and support those affected [E7]. The choice of terms here – ‘moral responsibility’ – can be seen as a direct reference to the terminology of the Birmingham Summit Report [E2].

This apology was given in English, French, and Haitian Creole which marked the first time that the UN apologised in a language that was not an official UN working language. The apology is part of a package of reparative measures [E8], designed to alleviate the suffering resulting from the outbreak and also reflects the recommendations of the Birmingham Summit Report [E2].

(ii) Reparations through the UN Haiti Cholera Response Multi-partner Trust Fund.

The UN set up a two-track policy response worth $400 million to provide reparations. These reparations are funded by UN Member States’ donation ($20 million have been received so far) and are administered by the UN Haiti Cholera Response Multi-Partner Trust Fund. Over $8.7 million have already been distributed to organisations in Haiti [E9].

Part of this fund (‘Track 2’) is labelled ‘a proposal to provide material assistance for those most affected by cholera’ and will offer financial assistance to communities most directly impacted by the outbreak.

Phase 1 saw pilot projects and the consultation with communities most affected reflecting the call for an enhanced understanding of victims’ needs in reparative processes as found in Freedman and Lemay-Hébert’s research [F4]. For phase 2, $6.7 million have been allocated to projects covering 134 local communities (those hardest hit by the epidemic) [E9].

The funding (so far) stops short of the direct compensation of affected individuals called for in Freedman and Lemay-Hébert’s work [F4]. However, indirect assistance of this kind still provides material benefits to many thousands of Haitians affected by the epidemic [E9].

(iii) Commitment to the eradication of cholera.

Alongside the assistance provided to affected communities (Track 2), the UN Haiti Cholera Response Multi-Partner Trust Fund has also allocated $3 million to support projects ‘intensifying support for cholera control and response’ (Track 1). The policy aims to respond, reduce, and eliminate cholera in Haiti by increasing provision and access to healthcare, sanitation, and high-quality water. Again, there is a clear mirroring of the framework scrutinised and agreed at the Birmingham Summit, and founded on Freedman and Lemay-Hébert’s research [F1–F4]. Importantly, this policy seems to be effective: at the fifth meeting of the advisory committee of the Trust Fund on 20 May 2020, the Special Envoy for Haiti shared data indicating zero laboratory confirmed cases of cholera and zero deaths for 16 consecutive months. This is a radical improvement in public health and patient outcomes, and a significant milestone in the eradication of cholera in Haiti [E9].