The Care Act 2014 is law, and the Department of Health is consulting on draft guidance and regulations. I was idly flicking through these looking for references to the Mental Capacity Act 2005 (MCA) and, well, whisper it, but there is some quite exciting stuff in there. I haven’t read it all, and no doubt soon enough I’ll be back to my usual grumbling self, but, well, it’s Friday and I’m in a good mood!
Independent living is one of the most important ideas in disability rights. It is inscribed in Article 19 of the UN Convention on the Rights of Persons with Disabilities, which reads:
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
(b) Persons with disabilities have access to a range of in-, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
The Joint Committee on Human Rights conducted an inquiry into the right to independent living and drew attention to a number of issues in implementing this right, including the need for freestanding legislation to protect the right to independent living in UK law. Now, as some of you may know, the Law Commission decided not to include a freestanding right to independent living in their work on Adult Social Care, which formed the basis for the Care Act. They argued that ‘independent living’ was an imprecise concept:
4.35 We have also reviewed the other principles put forward at consultation. We remain concerned that concepts such as dignity and independent living are too imprecise to be expressed as statutory principles. The notion of dignity has been used by the courts in judgments which are addressing texts which do not use the word dignity. This suggests that while a legal structure can be constructed in a way that is conducive to dignity – or even in a way which undermines it – it is difficult to build a legal structure on the imprecise notion of dignity.
They concluded that it was already adequately covered by the UN CRPD itself, which is an odd position to take since it is an unincorporated treaty which cannot be relied upon directly in domestic courts. They also held that it might ‘skew choice’, or ‘clash with the choice and control principle’:
4.36 At consultation, a principle based on independent living was often seen as a means of establishing enforceable legal rights to services. In our view, this is not the purpose of statutory principles. Furthermore, this concept is covered adequately by Articles 8 [sic] and 19 of the United Nations Convention on the Rights of Persons with Disabilities. We agree that a principle based on an assumption of home-based living would not be suitable to be included as a principle in the statute. The key issue should be the person’s wishes and feelings, and in effect this principle could skew choice in one particular direction.
4.9 A small majority of consultees who expressed a view argued that the statute should include a principle based on independent living, often on the basis that it would ensure rights to full citizenship for disabled people. However, others argued that independent living is too subjective, and could clash with the choice and control principle if, for example, a disabled person wants to be cared for in a communal setting.
This view betrays a huge misunderstanding of independent living as it is understood within the disability rights literature and the CRPD itself. Look at the text of Article 19. It explicitly states that independent living is about being able to choose a place of residence, where and with whom one lives, and not to be required to live in a particular setting (communal or otherwise). Neither is it about living without assistance, another common misconception, but about being able to exercise choice and control over how one is assisted.
I, and others, fumed about this misunderstanding, which often appears in other uses of ‘independent living’ in case law. But anyway, look at this hidden gem in the definition of ‘Wellbeing’ in the draft guidance:
1.17. Although not mentioned specifically in the way that “wellbeing” is defined, the concept of “independent living” is a core part of the wellbeing principle. Section 1 of the Care Act includes matters such as individual’s control of their day-to-day life, suitability of living accommodation, contribution to society – and crucially, requires local authorities to consider each person’s views, wishes, feelings and beliefs.
1.18. The wellbeing principle is intended to cover the key components of independent living, as expressed in the UN Convention on the Rights of People with Disabilities. Supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act. The language used in the Act is intended to be clearer, and focus on the outcomes that truly matter to people, rather than using the relatively abstract term “independent living”.
So, has ‘independent living’ – correctly understood as a right to control one’s place of residence, with whom one lives and one’s day to day life on an equal basis with others – been resurrected in the draft guidance? The devil is in the detail, as they say, and a lot will depend upon how effectively a person is actually able to exercise choice and control over services. Independence seems to be being used in paragraph 1.18 to mean living without support, rather than being in control of one’s life. So I think there is some slippage and muddle in the use of ‘independence’ here. And there are (at least) three potential obstacles to the reality of choice and control: 1) money – will there be sufficient resources available to support a person to live in a place of their choosing on an equal basis with others? 2) fettering – will local authorities still be able to restrict the ways in which they provide support because they have blanket policies on how they provide support or who they will commission to provide it? 3) mental capacity – for all this talk of choice and control in the wellbeing principle (and there is a lot), it’s all going to be conditional on a person’s mental capacity and – if they lack capacity – their best interests… But, still, at least the CRPD and independent living are recognised in this document, which will potentially give the right to independent living under Article 19 even greater traction in law if these types of issues get litigated.
Supported decision making
Supported decision making is a concept that is drawing growing attention because Article 12(3) of the CRPD requires that states ‘take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’. This can mean a lot of things (as the General Comment explains), but one of the things it means is ‘supported decision making’. This does exactly as it says on the tin: it’s systems of supports that help people to make decisions. These can be realised in loads of different ways, and not all systems are suitable for everyone (see the Resources page for some examples – in particular, check out Canada, Sweden, Ireland and Australia). But it looks to me as if something looking a lot like a localised form of supported decision making has quietly crept into the Care Act in the form of a right to an independent advocate and a ‘duty to involve’. In fact, although this draft guidance talks about advocacy, it’s actually tackling a much broader issue of how a person will be supported and how their wishes will be represented in community care decision making – by advocates, or by others.
The right to an independent advocate is triggered by it appearing to the local authority that ‘were an independent advocate not to be available, the individual would experience substantial difficulty’ in understanding, retaining, using, weighing or communicating their decisions. In other words, without an advocate, they would fail a functional test of mental capacity. So unlike ‘IMCAs’ under the MCA, the trigger isn’t that a person ‘lacks mental capacity’, it’s that they would need support to make decisions or communicate their wishes. The duty of the advocate isn’t to write a report on their ‘best interests’, it is to ‘to support and represent the person, and to facilitate their involvement in the key processes and interactions with the local authority’ (draft guidance, paragraph 7.3). The aim of the advocacy is:
‘to enable people who have substantial difficulty in being involved in these processes to be supported in that involvement as fully as possible, and where necessary to be represented by an advocate who speaks on their behalf. The ultimate aim is for people’s wishes, feelings and needs to be at the heart of the assessment, care planning and review processes.’
No mention of ‘best interests’ in there. This is starting to look a lot more like the kind of support envisioned in connection with the CRPD. There is an explicit duty on the local authority to support a person to express their wishes and feelings, and to support them to make decisions, regardless of how complex their needs are:
No matter how complex a person’s needs, local authorities are required to involve people, to help them express their wishes and feelings, to support them to weigh up options, and to make their own decisions.
There is also a duty upon the local authority to ‘assist the person to decide how much risk they can manage’ (para 7.19). And this isn’t a duty that a local authority can easily escape, as they ‘must form a judgement’ about whether a person needs such assistance to be involved (their emphasis, not mine). The guidance states that this kind of support can be provided by an IMCA if a person has one, so what we’re also seeing is a formal extension of a role that no doubt some IMCAs were already undertaking, in supporting people to make decisions for themselves.
This guidance isn’t just about advocates though (in fact, if I were writing it I would rename it something more like ‘Guidance on involvement, supporting decisions and advocacy’). The local authority has a duty to consider whether there is an existing person who could support a person’s involvement, if they need support to participate in decision making about their support needs. There are three considerations which define whether a person is ‘appropriate’ to providing this support. The first is that they must not be in a paid support role – ie. they must be a relative or a friend of the person. The second is that ‘the person who is to be supported must agree to the particular individual supporting them’, and the guidance goes on to say that ‘The person’s wish not to be supported by that individual should be respected regardless of whether the person is assessed to have or lack capacity’. This is a very interesting development around recognising the importance of a person being able to exercise control over who supports them to make decisions, regardless of mental capacity, and is central to understanding how ‘support’ is conceived within the CRPD. It is a right to refuse, rather than a right to choose, but still an important step nevertheless. There is also guidance on the potential for conflicts of interest for two people in the same household both requiring support, and the need for separate advocates if this arises (7.31).
The significance of having a right to refuse, rather than a right to choose, will no doubt arise where a local authority may decide that a person is not an ‘appropriate’ supporter. It is the local authority’s decision – not the person’s – as to who is ‘appropriate’ to facilitate their involvement (paragraph 7.30). The guidance gives some examples of when this might be the case (para 7.26) – a person who lives too far away and whose contact with the person is too sporadic to involve them, ‘a spouse who also finds it difficult to understand the local authority processes’, or ‘a friend who expresses strong opinions of her own prior to finding out those of the individual concerned’. The guidance states that ‘It is not sufficient to know the person well or to love them deeply; the role of the advocate is to support the person’s active involvement with the local authority processes.’ I smell potential conflicts ahead here as would-be supporters feel overlooked, but it will all depend on how the guidance is interpreted. This does appear to dilute somewhat a person’s ability to choose who supports them, although it might also reduce pressure on a person to nominate a particular support person if they are putting them under pressure to choose them. I suppose what I feel is missing in this guidance is a clear duty on the local authority to recognise family and friends as supporters for how a person might make decisions, so they don’t, for example, get booted out of a capacity assessment, but perhaps that’s implicit in the guidance? But what we do seem to be seeing here is a recognition that family and friends are more than just people to be consulted about best interests, they are part of a person’s support networks in making decisions.
The guidance goes on to outline three further situations where a person would have a right to an independent advocate, even if they had somebody who could facilitate their involvement:
• where the exercising of the assessment or planning function might result in placement in NHS-funded provision in either a hospital for a period exceeding four weeks or in a care home for a period of eight weeks or more and the local authority believes that it would be in the best interests of the individual to arrange an advocate;
• where there is a disagreement, relating to the individual, between the local authority and the appropriate person whose role it would be to facilitate the individual’s involvement, and the local authority and the appropriate person agree that the involvement of an independent advocate would be beneficial to the individual [7.32]
7.3 3 . But there is one further important exception. The exception is where a deprivation of liberty may be the result of the proposed care and support plan. The Supreme Court has clarified that there is a deprivation of liberty for the purposes of Article 5 of the European Convention on Human Rights in the following circumstances: the person is under continuous supervision and control and is not free to leave, and the person lacks capacity to consent to these arrangements. Where a proposed care and support plan may involve restricting a person’s liberty to the extent that they may be deprived of their liberty, in any setting, an advocate must be involved. For example where:
• a family member strongly opposes a care and support plan that involves moving a person who lacks capacity into a care or nursing home;
• a person is objecting to leaving their home in the community;
• a care and support plan is so restrictive that paid staff make all the day-to-day decisions about a person’s life;
• a care and support plan involves serious restraint, such as placing a person in seclusion, or physical restraint which is distressing to the person;
• a care and support plan involves serious restrictions on freedom to associate with family and friends;
• a care and support plan makes no provision for the person to be able to ‘go out of’ the place they live in, i.e. for leisure or social activities;
• a care and support plan makes a person entirely dependent for everything on paid staff, and there are no family or friends involved. [7.33]
What we’re also seeing here, I think, is growing recognition of the inequality of arms between people using community care services and their families, and those providing them. Over the last few months, an alarming number of cases concerning families battling to keep their relatives at home rather than see them admitted to assessment and treatment units, or trying to get them out again with the appropriate support, have come to my attention. The involvement of an independent advocate where a person may move to an NHS funded placement, or where a person may be deprived of their liberty and there is a dispute about this or the placement is very restrictive, could, at the very least, help the person and their families to understand their rights and the (often limited) remedies available to them. The second circumstance is framed in a very interesting way – it’s not just about conflict between a person’s family and professionals, but also about their agreement that the person could benefit from advocacy. Are we seeing here recognition that advocates potentially play a dispute resolution role? We are certainly seeing recognition that advocacy is about more than just involving a person in a local authority’s decision making (certainly this is very important), but also about helping people to hold the local authority and the NHS to account in their decision making.
The advocate’s duties in these three ‘special’ scenarios are also interesting. They must:
• actively apply the provisions of the Mental Capacity Act, particularly the five principles and specifically the “least restrictive” principle;
• when supporting and representing people in the development of new care and treatment plans for individuals lacking capacity, be alert to and identify any restrictions and restraint which may be of a degree or intensity that mean an individual is being, or is likely to be, deprived of their liberty (following the revised test supplied by the Supreme Court);
• where a potential deprivation of liberty is identified, a full exploration of the alternative ways of providing the care and/or treatment should be undertaken with those responsible for care planning, in order to identify any less restrictive ways of providing that care which will avoid a deprivation of liberty;
• where the care/treatment plan for an individual lacking capacity will unavoidably result in a deprivation of liberty judged to be in that person’s best interests, advocates must ensure that those responsible for the care plan know that this must be referred for authorisation. [7.34]
Now, if I were to rewrite that, I wouldn’t just emphasise the ‘least restriction’ principle, but also the support principle (s1(3) MCA), not to mention the more progressive bits of the best interests principle. These duties take the independent advocacy role away from just supporting a person’s decision making and involving them, into building a case for less restrictive options. Identifying the ‘least restrictive alternative’ is a huge problem under the the MCA and the DoLS at present, because of a lack of any clear obligation to specify what alternative support could be made available than the placement on offer. It still isn’t completely clear (maybe it’s in bits of the guidance I haven’t got to yet though), but it does suggest that ‘a full exploration’ (emphasis mine) is necessary. Perhaps a duty to inquire what else could be put in place implies a duty upon local authorities to provide some kind of response to that inquiry…? Then there is a duty upon advocates to flag up potential unlawful deprivation of liberty, which will be important for handing people the tools they need to challenge any detention. It is striking, though, to see the duties of advocates here being framed again in terms of best interests, and I wonder how that can be squared with the duty to represent the person’s wishes if the person’s wishes and the advocates’ view of their best interests don’t coincide…
I’ve babbled on at length here and there are about three thousand more pages of guidance for me to take a peek at. But I just wanted to share these hidden gems with you in the guidance I’ve looked at already, as I think they’re rather exciting, and they certainly suggest that somebody somewhere drafting this guidance is moving towards an approach to community care which is more commensurate with a disability rights approach. I’m not saying it’s perfect, but it’s certainly interesting and potentially quite exciting.
No doubt I’ll find something to grumble about again soon, but in the meantime have a good weekend!
[Sunday update: just reading the guidance on Care and Support Planning, and there’s some fantastic stuff in there too! Explicit confirmation of what I was trying to say about advocacy: ‘The modern care and support system will routinely provide supported decision making, where options and choices are presented simply and clearly’ (paragraph 10.4). Also, a clear focus on a person-led process, with no (explicit) qualification for ‘capacity’ and ‘best interests’: ‘Both the process and the outcome should be built holistically around people’s wishes and feelings, their needs, values and aspirations, irrespective of the extent to which they choose or are able to actively direct the process.’ Obviously the proof of the pudding will be in the eating, but you’ve got to start with a good recipe at least…
I can’t remember the last time I felt so positive about legal developments in the UK… it really makes me think that if we were to put our minds to reforming the MCA and the DoLS we could do something quite exciting. But it’s ok, I haven’t had a total personality change, the safeguarding guidance was so poor in places it took my breath away, but I’ll spare you my grumblings and file those directly with the DH]