What does liberty mean, and what value do liberty safeguards hold, for people who draw on care services? Can a person who others describe as happy or content be deprived of their liberty? Can a person be said to be deprived of their liberty if their care arrangements are supposed to keep them safe and be in their best interests? Can a person be deprived of their liberty when they are living in their own home, perhaps with their family?
Reforming the right to liberty?
Over the past few weeks I have been exploring these fundamental human rights questions in workshops I organised with the Mental Diversity Law Network. The workshops were funded by a Wellcome grant and included a range of people involved in or potentially affected by, legal frameworks that regulate rights to liberty for people who draw on care services. I organised these workshops because the government is currently consulting on reforming the Human Rights Act 1998 (HRA). In the document where the government gives its reasoning for wishing to reform human rights law it says that the courts are making too many decisions that affect public policy and public expenditure. It gives as an example a 2014 Supreme Court ruling known as Cheshire West, which defines what ‘deprivation of liberty’ means for people who are assessed to ‘lack capacity’ to consent to their care arrangements. According to the ruling, a person is deprived of their liberty if:
- they are subject to ‘continuous supervision and control’; and
- they are ‘not free to leave’.
This applies regardless of the nature of somebody’s disability, regardless of whether the care arrangements are considered to be in their ‘best interests’, ‘necessary’ to keep them safe, or even ‘normal’ for a person with a similar condition. It is a ‘universal test’ – the same rules apply for everyone. As Lady Hale put it in the Supreme Court:
Cheshire West
In the government’s human rights consultation document, it suggests that it is not a good thing to have a ‘universal test’ for deprivation of liberty. It criticised the judgment because it meant that ‘people living happily in a domestic setting’ could be categorised as deprived of their liberty. The suggestion is that if the government reforms human rights law, this could be one of the areas that they seek to change. This could have significant consequences for the right to liberty, and the liberty safeguards available for people who draw on care services.
What are liberty safeguards?
At the moment, people who draw on care services and are categorised as ‘deprived of their liberty’ are given special safeguards under the Mental Capacity Act 2005, which are linked to human rights law. At the moment, the safeguards are called ‘Deprivation of Liberty Safeguards’, but in the future a new system called the ‘Liberty Protection Safeguards’ will replace them. For simplicity, I refer to both systems as ‘liberty safeguards’, because they are both trying to do the same kind of thing:
- Determine whether a person has ‘mental capacity’ to make choices about their care or not;
- Insert an independent check on a person’s care arrangements, to ensure they are not too restrictive, to look into whether there are alternative (less restrictive) ways of caring for the person, and consider whether the restrictions are ‘necessary and proportionate’ in comparison with risks they are trying to prevent;
- Ensure the person has someone representing them and helping them understand and exercise their rights, possibly a friend or relative or even a paid advocate;
- Ensure there are regular reviews of the person’s care and any restrictions;
- Give the person (and their representatives) rights to challenge any deprivation of liberty in the Court of Protection.
If you are categorised as ‘deprived of your liberty’ then you get access to these safeguards; if you are not, you don’t. Changing the test of whether a person is ‘deprived of their liberty’ affects who gets safeguards; it does not suddenly set people ‘free’ because our definition of ‘deprivation of liberty’ changes. The real question we need to think about is: what are the value of these safeguards? Who should get them?
Safeguarding liberty workshops
This is how I found myself organising two impromptu online workshops for people concerned about this possible change, or interested in learning more about it. The workshops had no agenda other than to bring people together for a conversation and to share information about the law. These blog posts are to help other people learn what we talked about in case they want to find out more.
The first workshop, held online on 23rd January, was attended by various professionals who work with liberty safeguards. This included lots of social care practitioners, including some who perform these independent checks and assessments as part of their jobs (currently called ‘Best Interests Assessors’, but in the future they will be called ‘Approved Mental Capacity Professionals’), advocates and others involved in the liberty safeguards. It also included a lot of lawyers, who have experience of helping people bring court challenges for people who are deprived of their liberty in care settings. It involved some academics, some carers or relatives, and people who draw on care services, and people that work in civil society organisations concerned with human rights or the rights of people with mental health problems or disabilities. We benefitted from a presentation by Liberty about the wider context of human rights reform, and from Neil Allen (a barrister specialising in liberty safeguards) about how this could impact on the liberty safeguards. We asked some of the ‘DoLS gurus’ in attendance to facilitate breakout groups to discuss this amongst in smaller groups. These were chaired by Victoria Butler-Cole (the lawyers group), Jack Skinner (the social care practitioners group), Neil Allen (civil society group) and Lorraine Currie (carers and relatives and service users). I used polls to try and gauge people’s views on different topics, enabling people to share views anonymously that they might not have wanted to voice aloud.
The second workshop, held online on 18th February, was intended to replicate this discussion in a more accessible way, for people who have disabilities or conditions that are common in populations affected by the liberty safeguards, or family members. One problem with policy work in this area is that for the most part, people who actually are deprived of their liberty in care settings are not able to participate in events on this kind. We know remarkably little about their experience and perspectives (a topic for another day). We were unable to find any grouping or organisation that could identify people who are deprived of their liberty under the Mental Capacity Act 2005, and identifying them ourselves would have taken us into an ethical quagmire. So instead we used a solidarity and peer advocacy model of discussion – where we explored the issues with other people living with similar conditions, including conditions that could potentially place them at risk of being subject to liberty safeguards, to inform them about the changes and facilitate discussion.
We reached out to organisations of self-advocates of people with learning disabilities and/or autism (People First Keighley and Craven) and used our networks to invite people living with dementia who are involved in activism or policy work, including Innovations in Dementia. We also worked with Learning Disability England to invite family carers of people with learning disabilities, some of whom had direct experience of liberty safeguards for their relatives. Our breakout groups were facilitated by people with experience in these sectors – Tom Walsh and Catrina Farnell from People First facilitated online and in-person groups for people with learning disabilities and/or autism, Toby Williamson facilitated a group for people living with dementia or relatives, and Henry Wright and Rachael Hall from Learning Disability England facilitated a group for families and carers. Meanwhile I facilitated a group for anyone else who’d turned up and fancied discussing the issues, including some social work students. We also had ‘legal experts’ in attendance, including MDLN’s own Professor Peter Bartlett and Professor Wayne Martin, who lent their expertise to the groups when they had questions about the law.
At the accessible workshop, because we could not assume prior knowledge of the liberty safeguards, we explained what they were through real life stories. So Lucy told the story of Mrs KK (CC v KK), a woman with dementia who used the liberty safeguards to tell a court she did not want to live in a care home, she wanted to return to live in her bungalow, even if that meant living with a degree of risk. Lucy also told the story of Manuela Sykes, an activist who was placed in a care home when she developed dementia, and whose friend used the liberty safeguards to asked the court to give her a trial of living at home again (although sadly Sykes did end up back in the care home again in the end). We also learned about Steven Neary, whose father – Mark Neary – used the liberty safeguards to get his son home from a ‘positive behaviour unit’. But we also learned about a twist in the tale to this story, that after the Cheshire West case, the council decided that Steven was now deprived of his liberty when living in his own flat, with a team of personal assistants supporting him to live the life he chooses, despite being – in his dad’s word – ‘king of his castle’. This helped us to unpick some of the tricky questions about whether people who are ‘happy’ or living at home need liberty safeguards.
Accessible information
We knew that this topic can be hard for people to understand, so we also worked together on accessible information to support people who planned to come along. At the time we organised and held the workshops the government had not prepared any kind of easy read document explaining its proposed reforms to the Human Rights Act 1998. It published one (without pictures) a few days ago, but has not yet confirmed whether it will extend the consultation to give people who have only just had access to this to respond. You can read more about this problem, and the response of the British Institute of Human Rights, here.
Lucy wrote a document explaining what was going on, which was checked by others in the group, and then Tom and Catrina at People First produced an easy read version and even did a video read through of it. Meanwhile we asked for help from Philly Hare, who works with Innovations in Dementia to produce a plain English version supporting accessibility for people who prefer plain English to easy read. You can download these documents below this blog post.
What did people say about liberty, safeguards and human rights at the workshops?
When we held the workshops we all committed to the ‘Chatham House Rule’ – this meant we will not say who said what, and we will not tell other people’s stories, but we are sharing the kinds of things that people said, including concerns they raised or ideas they had.
At both workshops one thing came through really powerfully: people really valued both human rights law and liberty safeguards. There was real unanimity among professionals attending the first workshop that the liberty safeguards were important, and real concern that the human rights consultation potentially portended stripping away some (or all) of these rights, without really understanding the value of the safeguards. Many spoke of important opportunities for people to challenge care arrangements that were not right for them or their family member, including where court reviews had made big differences to people’s lives. The independent scrutiny achieved through liberty safeguards assessments was said to benefit people by reducing restrictions or improving care in ways that had a significant benefit to the person, including by supervisory bodies imposing ‘conditions’ on authorisations. Some practitioners described care planning overall as more personalised as a result of the safeguards. The deprivation of liberty safeguards were said to have had wider systemic effect, enhancing a ‘human rights’ culture, improving care planning, and putting the person more at the centre of things. However, some participants (at both workshops) stressed that we should be thinking more about positively promoting liberty, not just safeguarding it, and noted that without better resources for social care the safeguards were limited in what could be achieved.
At the first workshop, professionals were very worried about the idea of dismantling the Cheshire West ‘universal test’, and weaponising liberty safeguards to justify dismantling the HRA more generally. Some participants spoke of the government backing a ‘two-tier’ definition of deprivation of liberty, in which disabled people, older people, people living with dementia and others drawing on care and support could be subject to much higher levels of restriction and control before there is any independent scrutiny or safeguards for this. They would be second class citizens in respect of liberty. The reforms threaten to ‘level down’ not ‘level up’ human rights protection for those drawing on care and support. Some were also concerned that the Cheshire West test was relatively straightforward to understand and apply, and returning to a non-universal ‘concrete situation’ test would bring back the chaos and misunderstanding before the Supreme Court ruling.
At the second workshop, there was alarm that human rights for people with disabilities or living with dementia could be weakened. One group of self-advocates even wrote a poem about this, which they have said I can share here:
I want to be myself and I want to be happy.
I don’t want to be disrespected
It’s important that our human rights give everyone equal respect.
If I didn’t have my human rights I’d feel frustrated, disappointed and sad.
I deserve my rights.
I deserve my voice.
And I want the law to keep me, my friends and everyone safe.
What we want, a poem by members of People First Keighley and Craven
We also discussed the criticism raised by the government that the Cheshire West ‘universal test’ of deprivation of liberty means that people who are ‘living happily in a domestic setting’ are defined as ‘deprived of their liberty’, and that this defies ordinary language. I myself am somewhat ambivalent about this aspect of Cheshire West (you can read my thoughts on this in this article and – next month – in this book). So I’d like to think I invited genuine critical reflection on this issue.
Amongst the professionals, our polls showed that opinion was quite divided about what we called the ‘happiness question’ and the ‘family question’ (regulating family-based living arrangements as a ‘deprivation of liberty’). Some (particularly the lawyers) felt that liberty safeguards were really important, even for people who might present as happy or people living at home. Others were less sure about categorising people (like Steven Neary) who were genuinely happy living at home as ‘deprived of their liberty’, but wanted to see some kinds of safeguards for this group that at present were not available via any other mechanism under the MCA (If you want to know more about this kind of ‘legal capacity’ safeguard, have a look at the book and article I refer to above). There was a roughly even split on both these issues, suggesting that whilst there is unanimity about the value of safeguards in general, there is some scope for discussion about the particular form and framing these safeguards should take.
Amongst the second group, I confess I was expecting to see more pushback on the idea of categorising people who are ‘happy’ or living at home as deprived of their liberty, yet if anything this group was even more in favour of safeguards in both those situations. Within the breakout groups we had lengthy conversations about the sheer messiness of identifying whether a person is ‘happy’ or not. Self-advocates with learning disabilities and/or autism pointed out that a person’s so-called ‘challenging behaviour’ was often an expression of unhappiness about something in their environment (two of the three appellants in Cheshire West had ‘challenging behaviour’ towards their co-residents and staff, yet were labelled as ‘happy’ by some professionals and the courts). Meanwhile others pointed out that sometimes a person living with dementia could be unhappy because of something in their past, that bore no relation to their present. It was stressed that happiness was subjective, often difficult to determine and could change over time. All the groups wanted to know who gets to decide whether a person is happy or not. There was real alarm about the idea that people directly involved in a person’s care – for example care home staff – would be responsible for finding out if a person was happy or not, because they felt the person might not be able to speak up, or because if the person did not communicate verbally their behaviour might be misinterpreted or misunderstood. Several pointed out that often people say they’re happy because they don’t know what else is (or could be) available.
One of the participants identified a problem with systems of ‘checks’ and ‘assessment’ that the liberty safeguards are based upon – they rely upon a ‘transactional’ model of social work, where somebody is parachuted into a person’s life without necessarily knowing them, and makes critical decisions and determinations about them with serious consequences for their lives. They compared this to more ‘relational’ models of social work, which they felt was better. A carer gave an example of a very insensitive assessment that had left a person very upset. There was also agreement that the language of the liberty safeguards was bureaucratic, ‘governmental’ and off-putting. Yet despite these problems, there was a general sense that some kind of safeguard is necessary, they just needed to be done properly and not just pay ‘lip service’ to human rights.
People in the second accessible workshop also raised concerns about the long-term impact of covid on people’s rights. They felt that the isolation measures and rules around visitors imposed within care settings had normalised a high level of restriction, without any real legal basis or oversight, and they were very worried that this would remain as we all ‘learn to live with covid’.
Taking ‘safeguarding liberty’ forwards
The goal of the workshops was to open up a conversation and share information. Unfortunately, I do not have the time to run others before the government consultation closes on 6 March. Some of our participants intend to go on and participate in the consultation. If you would like to do so, you might find these resources from the British Institute of Human Rights useful. I intend to think more about how we can build workshops and work like this into future research on the liberty safeguards (do get in touch if you have any ideas!).
For my part, I will also be responding to the government consultation to tell them what we discussed and what people thought. I want the government to know the following:
- That ‘liberty safeguards’ are valued by legal and social care practitioners working in the field, people who have conditions that are often linked to deprivation of liberty in care settings, and their families.
- That legal and social care practitioners report that liberty safeguards bring wide ranging benefits for people who draw on care services.
- That there was little appetite for reforming the ‘universal test’ of whether a person is deprived of their liberty.
- That people want ‘safeguards’ to protect their right to liberty and their human rights.
- That government consultations should speak to the people directly affected by this area of law, and look properly at how it affects people’s lives, before proposing that it needs dismantling.
The Small Places 
Like Steven Neary, I think it is a mistake to label someone (like Mark Neary) currently living happily at home as ‘deprived of liberty.’ Whilst there are some people who need ‘safeguards’ I think these could be provided (if necessary) without this legal nonsense in line with UNCRPD supported decision-making principle.
[Some info removed by Lucy for legal reasons]
I wonder how representative your focus groups were of ordinary people/parents like myself facing this sort of ‘professional pride ?’
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