The elusive Article 19

There are a thousand things I need to do this morning – including clearing up the porridge bomb that’s gone off in my kitchen* and some actual work – so my apologies that this is a hastily dashed out and poorly referenced blog post rant.  It’s just easier than trying to reply in 140 characters to the millions of people tweeting me!

taking-the-dis

Poster from the DRC’s 2006 ‘Taking the Dis’ campaign. Time for another print run?

The prompt for this post is the recent case of A Local Authority v X.  In many ways I wish it was this case, not R(MN), before the UKSC next month, because it’s just such a clear cut case of the hollowing out of best interests, as Beverley Clough wrote about here (or – in fact in this case – even of a challenge to a finding of incapacity). It’s a stark example of the connection between economic and social, and civil and political rights.  It reveals the consequences of basing your legal and political systems on what Gerard Quinn calls ‘the myth of the masterless man’: you can have your right to liberty, but only if you don’t actually depend on anybody else doing something to make it a possibility.  And it reveals a fundamental problem with implementing that most fascinating sui generis right contained in the CRPD – Article 19, the right to live independently and be included in the community.  Because Article 19 is the example par excellence of a core civil and political right that non-disabled (or not yet disabled) people take for granted – the right to live in one’s own home, of one’s choosing – that requires the provision of economic and social rights to make it a reality for many disabled people.

The Care Act 2014 is framed around the ‘wellbeing principle‘, which – we are told – ‘is intended to cover the key components of independent living, as expressed in the UN Convention on the Rights of People with Disabilities (in particular, Article 19 of the Convention)’.  The text of Article 19 CRPD states:

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-home, 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 ‘core parts’ of Article 19 include the following:

  1. An equality element: having the same rights as everybody else to choose where you live.
  2. An autonomy element: having choice and control over your place of residence, and whom you live with, and not being obliged to live somewhere against your will.  Importantly, this isn’t the ‘right to live in the Ritz’ (like Mrs T), the standard here is set by reference to the equality element – the same rights as others.
  3. An inclusion element: the right to live ‘in the community’ (ordinary houses on ordinary streets, as a past campaign for the rights of people with learning disabilities once put it), and the right to use the same community services and facilities that everyone else uses (which clearly hinges on Accessibility – Art 9 CRPD, and non-discrimination – Art 5 CRPD).
  4. support element: the right to services – including personal assistance – ‘to support living and inclusion in the community’.

OK, so the Care Act is clearly concerned with the provision of support.  And the wellbeing principle (insofar as it is a principle – is it a principle?) lists ‘control by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided’ (sorry Wales, your version of this is slightly abridged).  So that’s a gesture at least towards the autonomy element.  Then you’ve also got various mechanisms under the Act which are supposed to put that ‘choice and control’ into practice. This includes the choice of accomodation regulations, which I’ve moaned about here because the one choice of accommodation they don’t actually give you is to live in  your own home.  You can live in a ‘living unit’ (or a care home with 100 front doors, as Mark Neary put it), and you can call it ‘independent living’ if you like, but it certainly isn’t what is called for by Article 19 and it’s not what’s meant by ‘independent living’ to anybody with any degree of familiarity with the Independent Living Movement.  And then there’s personal budgets, which I’ll come onto.

The Care Act may or may not facilitate your ‘inclusion’ in the community, but clearly the extent to which you can access the same shops and services and whatnot as everyone else is far beyond the scope of the Care Act and speaks to the accessibility (and friendliness and helpfulness) of society in general, which is more the preserve of the Equality Act 2010.

And then there’s the equality principle, which is perhaps the most conspicuously absent element from the Care Act.  And yet arguably this is the most important part of Article 19 – because the whole point of Article 19 is to articulate that disabled people have the same right as everybody else to live in their own homes and communities.  The point is to make this right visible, and to put out there the clear and bold statement that disabled people should enjoy this on an equal basis with others, rather than in accommodation ‘for disabled people’ like care homes, or like supported living if you read the Care Act regs.

So back to A Local Authority v X. Mr X had significant injuries, including tetraplegia and brain damage, following a fall from a roof.  He had been living in specially adapted accommodation.  It was undisputed that ‘he was only able to live in his own home with very considerable care and support provided by his local authority or other public bodies’. In addition:

Unfortunately, and however understandably, this catastrophe appears to have affected his personality and some, at least, of his thought processes. It is not in issue that he has from time to time resorted not only to considerable consumption of alcohol, but also to the use of hard illegal drugs. It appears also that, amongst his circle of friends, there are or were a number of drug abusers.

His care package began to break down ‘for reasons connected with his personality and behaviour, which had the effect that those caring for him became increasingly reluctant to attend upon him’.  His health and wellbeing began to deteriorate, including the development of septic bedsores, and ultimately he was admitted to hospital for treatment.  It was ‘obvious to all, and indeed accepted by him at that stage’ that he could not return home, so the local authority arranged for him to be cared for in a specialist unit in a hospital, where he had lived for around 10 months.  He longed to go home, which ‘has led on to the question being raised whether he lacks mental capacity to make a decision with regard to his residence’.  It’s not entirely clear how this case ended up before the CoP, but presumably it was identified as detention and was authorised under the DoLS** and Mr X exercised his rights under s21A MCA and Article 5 ECHR to appeal against his detention.  The CoP asked that a trial return home be considered.  A large multidisplinary meeting agreed almost unanimously  ‘that a trial of care at home could not realistically be contemplated or undertaken. However, conspicuously, the current treating psychiatrist felt that such a trial could and should in principle be undertaken.’

The local authority began searching for care agencies.  They considered it essential that Mr X have 2 carers present around the clock, both to help with mobilisation and also, to some extent, for the safety of the carers themselves.One care agency did propose to offer such a package of care, at a cost of £468,000 a year.  Holman J observed, ‘It is obvious that the resources of the State and of local authorities are not infinite’, and there was ‘a firm and final decision by the local authority that, realistically, within the overall budget available to them, they simply cannot, and will not, provide funding at the levels that I have mentioned’.

So, what then happens to Mr X’s rights of appeal?  There was a genuine open question about Mr X’s capacity to choose his place of residence.  That was to be the subject of the appeal.  But Holman J expressed great concern about proceeding to a hearing on this matter, at great public expense, because a determination of such capacity would be ‘abstract… if, realistically, there is no choice in the way forward for this particular patient in his circumstances.’

Of course, if he does have capacity to decide upon his residence, he could, theoretically, discharge himself from the hospital where he is currently being very well cared for and somehow make his way to his home and try to care for himself there. (para 26)

He can fairly ask through the Official Solicitor what minimum and lesser level of care the local authority would be willing to fund if he does have capacity to decide to return home and does, in fact, choose to return home. I do not know what answer the local authority will give; but one possibility is that they will say that they cannot fund any care on that basis, for the situation would be so unsafe for him that they would not be willing to participate in it. (para 27)

I just want to dwell on how important the first part of what Holman J is saying is: that a local authority cannot simply refuse to say what they would do if a person did have capacity and chose to go home.  This is because of the theoretical (or in this case, real) possibility that they do have the capacity to discharge and go home (or, even, the theoretical possibility that the COP might decide that it’s in their best interests).  This is very much the point made by Baker J in CC v KK, which I’m always banging on about.  I very much wonder how many capacity assessments around the Care Act are undertaken with this in mind.  It’s just so much easier to fudge the question of capacity and proceed to a (hollowed out) best interests decision, than face the difficult possibility that a person might have a hard edged right to go home and what will we do then?

I now want to consider the second part of what Holman J said: ‘one possibility is that [the local authority] will say that they cannot fund any care on that basis, for the situation would be so unsafe for him that they would not be willing to participate in it’.  And this takes us back to the Twitter discussion: can the local authority actually do this?  I agree that for a number of reasons this case  stretches this point to its very limits, but I am inclined to argue that it cannot.

On Twitter, I argued that if a local authority has decided a person requires +++ level of care, but the person will only accept a ++ level of care, the local authority has an obligation to provide ++ care – even though that’s risky – because to provide zero care is even more risky.  In essence, to argue that they can’t provide ++ care because it’s risky is irrational when the alternative is even more risky.  The point is that the person might go home (if they have capacity), and to simply leave them there with nothing is surely a far greater breach of any human rights, common law or professional obligations than the alternative, however unsatisfactory that might be.  Moreover, to the extent that providing a risky ++ care package might potentially violate positive obligations under Article 2 (or 3 or 8) ECHR, surely if the person has capacity and knowingly assumes the risks of a ++ package of care in preference to the +++ care package they don’t want, they assume the responsibility that these are not satisfied and the positive obligations are discharged?

To which, my wise fellow Tweeters made a number of responses.  Firstly, you can’t make professionals do things they don’t want to do (like cats, or babies).  This is based on a longstanding principle from medical law and from s117 MHA case law, which I won’t get into here.  Rather than arguing this as a point of law, I want to argue this as a point of principle: well why not?  Many professionals have to do things they don’t want to do in their lines of work (cab rank rule anyone?).  Could a probation officer refuse to supervise a high risk offender in the community?  Can a soldier decide not to fight a war they disagree with?  Why are health and social care professionals exempt from providing health and social care where they view it as too risky to the person?  Surely it’s the person’s own risk to take?  Why can they say ‘we’ll go in and provide +++ many visits a day, but not ++ visits’?  I’m not convinced by this argument.  I agree with Beverley, the provision of social care (even suboptimal care) for basic activities of daily living is not the same as requiring a professional to perform a contraindicated medical procedure, or a procedure (such as an abortion) that might contravene some religious belief.  The harm isn’t coming about from the care, but from the lack of care; by contrast, with medical procedures, the harm might come from the procedure itself.  It’s fair enough to say medics can’t be asked to do something that’s actively harmful; it’s another thing entirely to say that care professionals can’t provide the one thing that will mitigate the already existing risks, even if this doesn’t go as far as they’d like.  The point is, insofar as Mr X or any other community care service user might have capacity and chooses to live at home, it’s not in the local authority’s gift to remove the risks entirely by choosing the care home – so that’s not the choice for professionals.  The choice is some care that the person will consent to, or no care at all.  And the question of incapacity can only come second to that choice, which any person with capacity has a right to make.

Another argument, which I think is more convincing, is about the risks to the carers.  I agree, this is a big problem.  Having been a carer myself, and having been put in highly risky situations including being hit, kicked, pushed down stairs, smeared with faeces and worse, and having witnessed colleagues experience serious injuries including being stabbed and bitten, I am not remotely oblivious to the very real dangers faced by front line care workers every day.  In fact, in this case, the risks appear (from what we know) to be significantly less than the risks I’ve just described.  The point here though is that it was felt that the risk to the workers was manageable provided the carers could double up.  The problem was that this effectively doubles the costs.

Which takes us onto the real problem: cost.  The cost of providing 24 hour care for Mr X is eyewateringly high, as even he agreed.  But let’s not kid ourselves: this exact scenario plays out all the time for people whose packages of care are significantly less than half a million a year, for people whose needs tip them over into that extra visit a day where the cost of a care home suddenly becomes cheaper.  The point of principle here extends far, far, wider than packages of care like Mr X’s.

I know that care packages as costly as Mr X’s do exist, including in specialist hospitals, but the key point for the local authority was that they could meet his needs for less in the care home.  The cost to the local authority of meeting a person’s assessed eligible needs is, of course, the legal definition of a personal budget under the Care Act.  And in theory a person could ask the local authority for this amount to be spent in other ways.  They could ask for it to be spent on different accommodation – but as I’ve already discussed, that doesn’t include a person’s own home, so it doesn’t help Mr X.  They could ask for it as a direct payment, and use that to hire staff directly which can significantly reduce costs.  In fact, it seems from para 18, that Mr X had indeed made this suggestion but the judge described it as ‘completely unrealistic’.  It’s not clear why, but at law the local authority could refuse to make a direct payment on grounds that Mr X lacked the capacity to manage one (and there was no one else, such as a local disability organisation or a private case manager, willing and able to manage it for him), or they might rely on the rather vaguely worded exemption condition of s33(7)/s34(9) that this is not an ‘appropriate’ way to meet his needs.  Given the circumstances outlined above, it seems pretty likely they’d rely on that, regardless of the outcome of the capacity assessments.

So what then?  There is no other legal right under the Care Act to direct the local authority to spend the personal budget in a particular way, whatever their proponents argue.  It’s not your money that the local authority is holding in a pot somewhere for you.  It’s the local authority’s money, that they spend in satisfying their statutory duties under the Care Act.  The best you could get in a situation like this is to effectively force the local authority to provide some services at home by voting with your feet, moving home, and waiting for meals on wheels to turn up as paragraph 51 in Khana suggests they must (and this judgment casts doubt on even that).  But this isn’t the personal budget doing the work, this is just brinksmanship and your basic duties to meet eligible needs (like eating).  It’s highly telling, I think, that (as far as I know) the phrase ‘personal budget’ has never appeared in any of the CoP judgments about people’s rights to decide where they live.  The ‘rights to decide’ supposedly contained within personal budgets just aren’t strong enough to do what we need them to do to provide this most important element of choice and control.

So, this case is as much about the limitations of ‘independent living’ under the Care Act as it is about the limitations of theoretical rights of appeal when nobody will put in place the care you need to go home.  In an ideal world there would be enough money to provide Mr X with care at home.  There might also be ways of providing the care for less – for example, why does it have to fall to a private care provider to provide this service?  Private case managers employ care staff directly to care for even very challenging clients with brain injuries; often they will pay well above the going rate for care workers to hire highly skilled staff who are capable of managing high risk situations, but I bet this still costs less than half a million a year.  I am unclear why local authorities are not able to do this themselves, or why we seem to have given up on the very idea of direct public provision of care services.

I found this case profoundly depressing (although not, I am sure, as depressing as Mr X did).  I found it depressing that we have just accepted that rights to live in your own home come with a price tag that our very wealthy society cannot afford.  I find it depressing that we have accepted that rights to liberty are theoretical insofar as we cannot afford the cost of the community services we need to make a return home a reality.  I found it depressing that the very tone of the judgment implied it was almost impertinent to claim and exercise one’s right to liberty if one is reliant upon the state for support.  I find it depressing that instead of getting angry that this situation exists we end up arguing stupid technical points of law like ‘well, he should be trying judicial review’ when we know full well that Mr X himself can’t do that and nobody is going to do it for him, and that even if he did, the best you might get is the right to live at home with inadequate, risky, ++ care.  And I’m depressed that I’ve ended up arguing for the right to live at home with inadequate and risky ++ care, because to argue for the +++ care he needs is just so politically unthinkable as to seem laughable.

Anyway. Welcome back. I’m going to clear up my porridge spattered kitchen now, and enjoy having the right to do so.

ehrc-hidden-in-plain-sight-p151

Access to justice? Image from the EHRC report, Hidden in Plain Sight, p151.

*Anyone else’s baby wave their spoon with excitement at food they like? How do you stop them decorating the house with dinner?!

**The judge comments, at para 24, ‘To ordinary lay people it might seem a little odd to characterise him as being deprived of his liberty when, in fact, he is being provided with a high level of expensive care in a specialist unit after the very serious deterioration in his health that took place in his own home’.  The man is in a hospital against his will.  Imagine saying the same of a high security prisoner, whose costs in a specialist prison are also very high!  Part of the ethos of the CRPD is to base support and assistance on an outlook of rights, not charity, because if you base it on the outlook of charity you get statements like this that imply people should just be jolly grateful for what they’re given and forget their rights to autonomy.

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