rightsinreality

Thoughts on the crossroads of law, politics and society – for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Month: March, 2015

Five headline changes in the Care Act 2014

It’s Care Act Eve (The Night Before Care Act?) and time to focus on the good the new legislation may bring.

Yes, there’s not enough new money, with some councils issuing judicial review proceedings against the Secretary of State as a result. Yes, there hasn’t been enough time to prepare; Luke Clements has highlighted that there was a three year implementation period for the NHS and Community Care Act 1990, whereas the Care Act comes into force less than six months since the final guidance was published. So the world will not magically become a better place for people with needs for care and support overnight. However there are undoubtedly aspects of the new law which everyone interested in the rights of disabled people and carers must surely welcome. In the spirit of an earlier post on the Children and Families Act 2014, here are my top five changes:

  1. The well-being duty.The Care Act begins with what the guidance describes as a ‘principled approach‘ to adult social care in section 1. The precise words bear close consideration: ‘The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being’. As the guidance highlights, the involves local authorities actively seeking to improve the well-being of disabled people and carers in everything they do under the Care Act. Moreover ‘well-being’ is very broadly defined; the first aspect mentioned in section 1(2) is ‘personal dignity‘ and the list includes ‘control by the individual over day-to-day life‘ and ‘participation in work, education, training or recreation‘. It is clear from section 1(3) that judgments on well-being are subjective; local authorities must have regard to ‘the importance of beginning with the assumption that the individual is best-placed to judge the individual’s well-being‘. The guidance is perhaps somewhat ambitious in suggesting that the well-being duty effectively incorporates Article 19 of the UN Convention on the Rights of Persons with Disabilities, but it certainly strongly points local authorities in the direction of that obligation. If the spirit of the duty is adopted by local authorities then this will be a game changer in the way care and support is provided.
  2. Advocacy. If the well-being duty is the major change of principle, the advocacy duties might lead to the most significant change in practice. Section 67 requires independent advocates to be appointed at all stages in the care and support process where a disabled person or carer would have ‘substantial difficulty‘ engaging in the process and there is no ‘appropriate person‘ to represent and support them – note that the disabled person or carer can object to a suggested ‘appropriate person‘ and this should be respected. Section 68 creates a parallel duty to appoint advocates during safeguarding enquiries and reviews. The rights and duties of independent advocates are set out in the extensive Advocacy Regulations. Although there are some curious features of the regulations – should an independent advocate really be reporting to the local authority when things go wrong in the care and support process? – they plainly give advocates significant status and power in the care and support process. Many people will of course be entitled to both a Care Act advocate and an IMCA under the Mental Capacity Act 2005, and thankfully the guidance confirms that this can be the same person as long as they are qualified to take on both roles. The main issue seems likely be be under-supply of Care Act advocacy; a recent survey of providers found none who were confident that sufficient funding would be made available to meet the advocacy duty. Let’s hope this has changed in the past few weeks.
  3. Rights for carers. This one is for Mark Neary, who I’ve been promising for some time that I would try to show that the Care Act does something really significant for carers. The big news is section 20, which for the first time creates an express statutory duty to meet carer’s eligible needs. Previously there was a right to an assessment for carers, but no clear right to a service. Of course everything won’t suddenly be rosy for carers – for example local authorities are entitled to charge for support to carers under section 14, although the guidance discourages this (charging carers is described in the guidance as a ‘false economy’).  However there is now an obvious point to carer’s assessments, not least because a carer may be entitled to a service in their own right even if the disabled person doesn’t have eligible needs. Note also that there is no requirement for carers to be providing ‘regular’ or ‘substantial’ care – any level of informal care opens the door to an assessment and support for a carer’s eligible needs.
  4. National eligibility criteria. Adios the ‘FACS bands’ – no more ‘critical‘, ‘substantial‘, ‘moderate‘ or ‘low‘. Instead eligibility for both disabled people and carers is governed by the criteria set out in the Eligibility Criteria Regulations. The link is to a previous post where I’ve set out why I think the eligibility threshold for disabled people is set significantly lower than the current ‘substantial‘ band. Similarly for carers, the bar is not set too high – the carer has to be providing ‘necessary care‘ and there has to be a ‘significant impact‘ on their well-being, but many carers will meet these and the other tests in the regulations. So in my view many more people will have a right to have their needs met under the new scheme than the present scheme. This will be most obvious in the handful of ‘critical only’ authorities (Northumberland, West Berkshire, Wokingham – any others?) but may well also be the case in the many other areas currently operating a ‘substantial‘ threshold. The early case law will make clear whether I’m right about this.
  5. The extension of the Human Rights Act 1998 to non-state care providers. This is a change which has not had anything like the publicity it deserves. Section 73 puts paid to the long-running debate about whether private and voluntary sector care providers are caught by the HRA 1998. It is now clear that  all registered care providers providing care arranged or funded by a local authority are exercising ‘functions of a public nature‘ and must respect the incorporated ECHR rights. This means, for example, that private care providers will have to comply with the substantive and procedural obligations imposed by Article 8 ECHR (right to respect for private and family life and the home) in reorganising or closing services. It also potentially makes private providers liable for breaches of Article 5 ECHR occasioned by an unauthorised deprivation of liberty – something which should give charities and companies providing care serious pause for thought after the Supreme Court’s judgment in Cheshire West. What section 73 means for disabled people and carers is that their human rights must be respected regardless of the nature of the body actually providing them with care or support that is funded or arranged by the local authority. In the contracted-out world of social care this provides essential clarification and human rights protection.

So that’s my starter for five. There are many other candidates, please feel free to highlight any I’ve missed in the comments below. It’s important to note that under the transitional order the new scheme will apply from tomorrow (1 April) to new entrants to the system, with all existing recipients of social care to be reassessed or reviewed under the Care Act by April 2016. This is the date the new charging scheme is supposed to take effect, including at present an entitlement to free lifetime care for anyone who has an eligible need before their 25th birthday. Let’s hope that the swingeing cuts to local authority budgets don’t prevent the Care Act from realising at least some of its huge potential by that date.

For more on the Care Act, the website of Professor Luke Clements is an absolutely indispensible resource – check out in particular the updated overview briefing. This will have to keep us going until the next edition of Community Care and the Law comes out. There are also a huge range of resources produced by SCIE, the most recent on transition from children’s to adult services, which might merit a blog post of its own…

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Disabled people’s legal rights if we can’t #SaveILF

Although the Independent Living Fund operates in Scotland and Wales, the post is focussed on the transfer to Local Authority support in England.

The government has decided to close the Independent Living Fund (ILF) with effect from 30 June 2015. The description of the ILF on the gov.uk website (link above) is that the ILF ‘delivers financial support to disabled people so they can choose to live in their communities rather than in residential care’. The contradiction between closing the ILF and the aims of the No Right Ignored green paper is stark and obvious. The sum being transferred to local authorities is less than the current funding through the ILF and is not ringfenced.

Disabled people and organisations are campaigning under the #SaveILF banner to try to reverse the closure decision. The first judicial review challenge to the closure decision succeeded in the Court of Appeal. The second judicial review challenge failed after the government re-made the closure decision. This is a rare example of a fundamental weakness with judicial review – that a challenge to the process which succeeds may just result in the decision being taken again lawfully. The most recent legal step in the campaign was a complaint to the UN Disability Committee launched last week by two disabled women.

It goes without saying that I strongly agree with all those challenging the closure decision. The ILF has been closed to new applicants since June 2010 and doesn’t support anywhere near enough people – but you deal with the unfairness this creates by providing better community support for all disabled people, not by taking away vital funding from those whose lives have been fundamentally changed for the better by the ILF. The numbers involved are also significant – the ILF currently supports around 18,000 people. How realistic is it to expect that local authorities will manage well the transfer of responsibility for this group of severely disabled people at a time of deep cuts to their budgets across the board?

However there has been no clear promise that I have seen from any of the major parties to reverse the ILF closure decision after the May election. It seems that only Caroline Lucas for the Greens has expressly supported retaining the ILF. Hope that Labour would reverse the closure decision if in government after the election appears to have been dashed. I hope this changes – but given the Fund closes at the end of June we can’t afford to wait to work out what happens next if (as seems highly likely) the closure decision stands.

The headline message is that the responsibility for providing support for disabled people who have received ILF funding will transfer solely to Local Authorities. My view is that the law is likely to require in most cases that a very similar level of support is provided after transfer – although that may well not be what happens in practice without challenge from disabled people, advocates and friends, families and allies. In particular it will be unlawful if the closure of the ILF results in disabled people being forced into residential care. I’ll explain my thinking on this below – but first we need to look at what the official guidance says on the ILF closure process.

The starting point is the statutory guidance issued under the Care Act 2014, as it will be unlawful for Local Authorities not to follow this guidance in the absence of a considered decision not to do so. There is also non-statutory guidance on the ILF transfer programme issued by the Fund in April 2014 and aimed at current ILF recipients. This guidance describes a six stage transfer process which should be followed.

The Care Act guidance deals with issues relating to ILF closure in chapter 23 on ‘Transition to the new legal framework’. The section on the ILF starts at para 23.26. In the second paragraph (23.27) the guidance states ‘Local authorities will have to meet all former ILF users’ eligible needs from 1 July 2015. Funding in respect of former ILF users will be distributed to local authorities on the basis of local patterns of expenditure following transfer, to allow them to meet users’ care and support needs’ (emphasis added).

It is therefore essential that there is a proper determination of which needs are ‘eligible’ before the ILF closes for every current ILF recipient. As the guidance states at 23.28, ‘Local authorities will need to plan for the transfer of adults currently receiving ILF payments to ensure that their care and support continues and is not interrupted during this period’.

To do this Local Authorities will have to complete an assessment under the Care Act and apply the new national eligibility criteria to determine which needs are eligible for support.  As I have blogged previously, I think that the new national eligibility criteria are more generous that the current ‘substantial’ band. Importantly the outcomes which can make a person ‘eligible’ include:

  • Being able to make use of the home safely
  • Maintaining a habitable home environment
  • Developing and maintaining family or other personal relationships
  • Accessing and engaging in work, training, education or volunteering
  • Making use of necessary facilities or services in the local community
  • Carrying out caring responsibilities for a child

These are the kind of independent living outcomes which the ILF has previously funded.

The duty under section 18 of the Care Act 2014 is to ‘meet needs’, not provide a particular service. This raises the possibility that a Local Authority would purport to meet a person’s needs by a means which does not promote an independent life for them – at its most stark by offering only a package of residential support in a care home on grounds of cost. We know some local authorities are already operating ‘maximum expenditure policies’ where the cost of care at home is capped at the level of the cost of a care home placement for that person.

Para 10.27 of the guidance is of great importance in cases like this:

In determining how to meet needs, the local authority may also take into reasonable consideration its own finances and budgetary position, and must comply with its related public law duties. This includes the importance of ensuring that the funding available to the local authority is sufficient to meet the needs of the entire local population. The local authority may reasonably consider how to balance that requirement with the duty to meet the eligible needs of an individual in determining how an individual’s needs should be met (but not whether those needs are met). However, the local authority should not set arbitrary upper limits on the costs it is willing to pay to meet needs through certain routes – doing so would not deliver an approach that is person-centred or compatible with public law principles. The authority may take decisions on a case-by-case basis which weigh up the total costs of different potential options for meeting needs, and include the cost as a relevant factor in deciding between suitable alternative options for meeting needs. This does not mean choosing the cheapest option; but the one which delivers the outcomes desired for the best value. (emphasis added)

This final sentence is obviously key. Needs should be met in the way which delivers the desired outcomes for the best value. None of this will be achieved by forcing a disabled person into a care home or other residential accommodation against their will. This is reinforced by a later paragraph of the guidance, para 11.7:

At all times, the wishes of the person must be considered and respected. For example, the personal budget should not assume that people are forced to accept specific care options, such as moving into care homes, against their will because this is perceived to be the cheapest option. (emphasis added)

So in addition to this clear message in the Care Act guidance, what are the ‘related public law duties’ that local authorities will have to comply with when someone transfers from ILF support? As well as the general requirement to act rationally, reasonably and fairly, one of the central requirements will be to respect the person’s human rights. This includes the ECHR rights directly incorporated into English law by the Human Rights Act 1998, most notably Article 3 concerning freedom from inhuman and degrading treatment and Article 8, which mandates respect for the individual’s family and private life and their home. Article 5 ECHR is also important, as it protects a person’s liberty which may be deprived if they are placed in a care home against their will. These rights bring with them ‘positive obligations’ on the state to take steps to avoid them being breached.

However the recent Supreme Court judgment in the Benefit Cap case (R (SG) v Secretary of State for Work and Pensions) makes clear that in interpreting the ECHR rights incorporated by the Human Rights Act 1998 the rights under the other human rights conventions may also be highly relevant (blog post on what the Benefit Cap judgment means for international human rights in English law to follow). The most obviously relevant right in the UN Convention on the Rights of Persons with Disabilities (CRPD) in ILF transfer cases will be Article 19, headed ‘Living independently and being included in the community’. The essence of Article 19 is that disabled people should be able to choose where they live on an equal basis to others, not to be forced into particular living arrangements (this is also the principle behind the #LBBill being promoted by the Justice for LB campaign). So any decision taken by a local authority which requires a former recipient of ILF funding to live in a place or in a way which is different than they would choose may well breach Article 19 of the CRPD, read with Article 8 ECHR.

Would such a decision breach the Care Act itself? Possibly, depending on how the courts interpret the well-being duty in section 1. This duty states that in carrying out their Care Act functions in an individual case the local authority must ‘promote that individual’s well-being’. ‘Well-being’ is then defined in a lengthy list of factors, including ‘personal dignity’ and ‘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)’.

It may well be that the courts hold that forcing a person into residential care against their will breaches the well-being duty. However notably absent from the list in section 1(2) is the principle of choice which is so central to the Article 19 CRPD obligation. This is why there must be some degree of caution about the optimistic words of the Care Act guidance at paras 1.18-1.19; ‘Although not mentioned specifically in the way that “wellbeing” is defined, the concept of “independent living” is a core part of the wellbeing principle…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 (in particular, Article 19 of the Convention)’. However the guidance should be read at face value until a court expresses a different view.

The link between the well-being duty and the ILF transfer process is expressly made in the Care Act guidance at 23.29. However the guidance also makes clear not only that resources are generally relevant to local authority decisions (see para 10.27 cited above), but also that direct payments may not be made ‘where the costs of an alternate provider arranged via a direct payment would be more than the local authority would be able to arrange the same support for, whilst achieving the same outcomes for the individual’ (para 11.26). We may well therefore need the full force of the human rights obligations to stop disabled people’s right to independent living being undermined by the ILF closure.

The Care Act guidance describes a ‘Transfer Review and Support Programme’ being run by the ILF to assist users to transfer to local authority support. This should involve a face-to-face meeting with an ILF assessor and a local authority representative. However this cannot take the place of a full assessment by the local authority and a determination of eligible needs under the Care Act eligibility regulations. This is plainly required given that the closure of the ILF will be a highly relevant change of circumstance for those who currently benefit from it.

I hope that everything I have written above will become entirely irrelevant because the next government will heed the call to reverse the ILF closure decision. If it doesn’t, given the overall pressures on local authority budgets it seems likely that many post-ILF cases will be fought out between disabled people and their local authorities, including in the courts. This does not seem to be the most auspicious of likely starts for the new Care Act era.

The need to save ILF has been highlighted powerfully recently by Tom Shakespeare on Radio 4’s A Point of ViewThe Independent Living Strategy group – a group of disabled people and allies from a range of organisations concerned about independent living – are about to launch a survey about people’s experiences of independent living and specifically the ILF transfer. This film by Kate Belgrave and Ros Wynne-Jones shows disabled people making the case for why ILF should be retained. As Daphne Branchflower states in the film, ‘everyone…deserves to be able to reach their full potential. The ILF definitely helped me to reach my full potential’. Will we be able to say the same about the Care Act in five or ten years time?

I hope this post is some help for disabled people and their allies who are planning for the transfer from ILF to local authority only support from 1 July 2015. We must not let the dire (and understandable) predictions that local authorities will breach disabled people’s human rights after ILF transfer come to pass. Comments on how the process is working and any observations on these legal issues most welcome below.

#SaveILF

No right ignored, but which rights? First response to the green paper

The government has published No voice unheard, no right ignored – the Green Paper (consultation) on services for ‘people with learning disabilities, autism and mental health conditions’. Credit to the Minister for realising that the law we have at present simply isn’t enough to protect people’s rights. Even more credit to the civil servants who have turned this consultation around so quickly and in time for the General Election. It is a real sign of a changing culture when a person who has been in Assessment and Treatment Units (Gavin Harding MBE) writes a foreword to a government consultation alongside the Minister. And is permitted to say in his foreword that ‘it should have been done a long time ago’ .

The consultation runs through the election period, and what happens with it will depend on the next government. Still, it is clearly worth detailed engagement with the consultation as whatever government we have next will need to deal with all our feedback.

The consultation comes out at just the time the Justice for LB campaign is finishing work on the second draft of #LBBill. Some of the ideas from the first draft of the Bill have made it into the consultation, which shows that all the work thousands of people have put into the campaign is making a difference. But before we get to the detail a few comments on the headline approach:

  • The consultation is limited in scope to people with learning disabilities, autism and mental health conditions. #LBBill isn’t – we took the view that there is no reason to limit any new law to people with particular impairments because we need a legal right for all disabled people to have their choices, wishes and feelings respected about where they live and what they do. The ‘scope’ section of the consultation document (p8) shows that it was not possible even with this brief to avoid putting forward proposals which would affect all disabled people.
  • The focus on the consultation is about keeping people out of ‘institutions’. But the stories we get through the discussion on #LBBill show that institutions come in very many forms. Some of the arrangements we have heard about are badged as ‘supported living’, but in reality see disabled people kept segregated in their ‘own’ home but without any of the support they need to make their own choices or be part of the community. This is why there is no definition of a ‘good’ or ‘bad’ home in #LBBill – what matters is whether the home is what the person wants and how they get to live there.
  • There are similar concerns about the idea which is central to the consultation of people being ‘close to home’ – in other words close to their families. The starkest reminder of the problem with this is LB himself, who died in an ATU very close to where his family lived. It seems to me that what is needed is the support to make sure everyone can be included in their community – not sent away only 20 miles instead of 200 miles. As Gavin Harding says in his foreword, ‘smaller units, and supporting more people in the community…should be possible everywhere’.
  • Although both the Minister and Gavin Harding talk powerfully about the need to support children and young people, it seems that this consultation generally is about adults only. From the scope section on p8 the suggestion is that the needs of disabled children and young people will be fully met under the Children and Families Act 2014. The posts throughout this blog suggest that this confidence may be misplaced. By contrast #LBBill would cover all ages.

Moving on to the detailed proposals – my top ten headline thoughts are:

  1. A proposed duty on NHS commissioners to focus on people’s well-being, mirroring section 1 of the Care Act, is obviously welcome. It’s clear though that such a general duty will not create individual rights to support for a person to live in their community as they choose.
  2. The proposal to have regard to a specific series of factors – keeping people in their community, links with family and friends, opportunities to participate in work, education, training or recreation and the least restrictive setting – are also welcome and come from the first draft of #LBBill. But what many people have said in response to the first draft of the Bill is that these principles don’t go far enough and what we need is enforceable legal rights to choice and community inclusion, mirroring Article 19 of the UN Convention on the Rights of Persons with Disabilities.
  3. Ensuring sufficient community provision is a central idea of #LBBill and it is good to see this in the consultation. However I am concerned that it is proposed to limit this duty to ‘people with learning disability or autism most at risk of going into hospital’ (p23). In my view there has to be a joined up duty on the NHS and local authorities to provide the community support that all disabled people need. Singling out particular sub-groups of disabled people seems to me both wrong in principle and completely impractical.
  4. The approval principle in clause 5 of #LBBill is reflected in the proposal that consent should be required before a person is admitted to an inpatient setting (p28). However this is restricted to people who have capacity to make the decision. In cases where a person lacks capacity to decide whether to be admitted the proposal seems to be that best interests decisions will simply continue to be made by the Local Authority or NHS body unless the question is referred to the Court.
  5. The additional safeguard proposed for what would seem likely to be the majority of cases where a person is admitted to an inpatient setting is a ‘gateway process’ where ‘statutory bodies have to demonstrate to another expert group (ideally which entails family involvement where appropriate) that it is necessary and appropriate for an inpatient admission or certain comparable living arrangements to be made before they are made’ (pp27-28). This seems to me nowhere near enough – note in particular that families may be involved in this process, but there is no reference to disabled people in this ‘expert group’. This proposal needs to be significantly toughened up through the consultation process if it is to make any difference. I’d suggest questions 12-14 in the consultation therefore need a particularly strong and detailed response.
  6. The proposed new right to request a transfer from an inpatient setting (and it seems generally have that request followed) is welcome, but again is limited only to those who have capacity to make this decision.
  7. Given this focus on capacity in the proposals, the absence of any suggestion that the Mental Capacity Act 2005 should be amended is particularly disappointing. None of the ongoing work listed at para 2.35, p33 of the consultation is looking at whether the MCA needs to be amended to give a greater focus on the person’s wishes and feelings and a stronger role in decisions for family and friends. These ideas are in clause 7 of #LBBill. A much more fundamental review of the MCA would be welcome, to look at how it could be made fully consistent with the growing focus worldwide on supported decision-making. If none of this is looked at then it seems that the full benefits of the consultation proposals will be reserved for the narrow group of people who have capacity to decide whether or not to be admitted to an inpatient setting.
  8. The idea that only organisations who include self and family advocates in their governance should get contracts for the delivery of services is interesting and seems welcome – at least in sending a message about the involvement of disabled people and families in the way care is provided.
  9. There is a helpful set of options about the way we should deal with the inclusion of autism and learning disability within the scope of the Mental Health Act 1983. After extensive debate the second draft of #LBBill will propose the third option – that learning disability and autism should be excluded from the civil sections of the MHA but not the criminal justice sections. We definitely need more debate about all the options here.
  10. A new legal right to a personal health budget is a welcome idea – but it is not clear why this should need to be limited to one of two very narrow groups, as proposed at p52.

The Minister says in his foreword that ‘The ability to choose to live as independently as possible with support and to have access to community, to family and to opportunities like anyone else should be embedded in the design and practice of the system. Real exclusion is an essential not an optional extra’. The consultation contains lots of ideas that would help make this vision a reality – but inevitably it doesn’t go far enough. Please take the time to respond and help make sure the next government goes further. I’m looking forward to the discussion both on the consultation and the second draft of #LBBill, which we hope to publish before Easter when the Easy Read version is ready.

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