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.

Tag: Autism

Safer homes for disabled children – crowdfunding cases for disabled children’s rights

Disabled children need safe and suitable homes – but with the housing crisis in parts of the country it is unsurprising that many disabled children have neither. The families of two disabled children (M and A) are challenging Islington council for failing to provide them with accommodation where they will be safe from falling and have sufficient space to meet their needs.

The challenge failed in the High Court. In particular the Judge held that the duty to co-operate between housing and children’s services in section 27 of the Children Act 1989 did not apply to ‘unitary’ authorities, for example London councils. Secondly the Judge held that the failure to put in place a child in need plan for M or A was not unlawful – despite the clear terms of the statutory guidance requiring such plans. Both these findings may reduce the protection of the Children Act scheme for disabled children if left unchallenged.

To their credit M and A’s families are willing to carry on the fight to the Court of Appeal. The issues their cases raise are obviously of very wide importance, potentially affecting thousands of families with disabled children. As such their legal team has worked with the organisation Crowdjustice to see if money can be raised from the community. The initial target is 3,000 pounds, which will allow the appeal to proceed to the next stage.

In my view the attempt to crowdfund M and A’s appeal is hugely significant. If it works in this case it can work in other cases – and be an answer in the right cases to the problems caused by the restrictions on legal aid.

Please consider supporting this important appeal by donating through Crowdjustice Please also spread the link throughout your networks.

For information on disabled children’s rights to housing see chapter 7 of the second edition of Disabled Children: A Legal Handbook. The section of this chapter in relation to accessing suitable housing for disabled children and families was written by M and A’s solicitor Rebekah Carrier.

Disclaimer – I work closely with the legal team for M and A. However I am not instructed on this particular case.

Disabled Children: A Legal Handbook – second edition now available

I’m thrilled / relieved to say that the second edition of Disabled Children: A Legal Handbook is now available online.

Legal Action Group published the first edition in 2010. It is astonishing how much of the text has had to be rewritten some five years later. We have had a wholly new SEN scheme under the Children and Families Act 2014, major changes to social care for disabled young people and those in transition to adulthood under the Care Act 2014 and a massive reorganisation of the health service under the Health and Social Care Act 2012. All this change has basically made the first edition a museum piece.

As well as covering these headline Acts and the relevant regulations and guidance as best we can, we also have some fantastic new content for the second edition. Camilla Parker has produced the definitive guide to decision making and issues in relation to capacity and competence. Polly Sweeney has given us an incredibly useful resource by way of a chapter on all the forms of remedies available to disabled children, young people and families (as well as updating the Education chapter). Rebekah Carrier led on major improvements to the Housing chapter, including new content on how to help make sure families get a home which is suitable for their needs.

We also had the benefit of excellent input from Martha Spurrier who updated the Health chapter and Louise Price who updated the Equality and Non-Discrimination chapter.

The co-authors remain myself, Prof Luke Clements and Dr Janet Read. If (when) people discover we’ve got anything wrong, it’s our fault.

The law affecting disabled children, young people and families is excessively and unnecessarily complex. The complexity has been made worse by the new legislation, which sits on top of old law dating back at least until 1970. We have done our best to make the book as accessible as possible while accurately stating the law. We hope the extensive cross-referencing will help non-lawyers find their way around the text.

As with the first edition, all the chapters of the book will again be published online free of charge by the Council for Disabled Children – I’ll confirm when the downloads are available. I hope anyone who would print the whole thing out would consider buying the book instead (!)

Above all, I hope the book continues to make a contribution to ensuring that disabled children, young people and families get the services and support to which they are entitled by law.

Final thought – as I tweeted earlier, we are very proud to have part of the Justice Quilt on the cover (see image above). I hope anyone who buys the book will also sign up to show their support for the Justice for LB campaign as they continue to struggle to get justice from the system.

Guest post – how SOS Transport Sefton saved their disabled teenagers’ school buses

SOSTransportSefton

This is the first in what I hope will be an occasional series of guest posts on some of the themes and issued covered on this blog. It is written by Joanne Allman with input from Bee Jones from the campaign group SOS Transport Sefton. I saw some of the work of the group on Twitter and thought they captured perfectly what it takes to fight back successfully against the cuts to disability and children’s services. There is much to be impressed by reading Joanne’s account of the campaign, but from my perspective I particularly like how the potential for a legal challenge was integrated into the overall campaigning work. The campaign also shows the importance of engaging at the highest possible level, in this case with the Council Leader.

As we wait for more cuts to to be announced in the new government’s ’emergency’ budget this summer, I hope Joanne’s words and the work of the campaigners in Sefton will help inspire other groups, nationally and locally, who are challenging the consequences of austerity. All comments welcome – as are other suggestions for guest posts.

Birth of a campaign

Campaign group SOS Transport Sefton was born of two parents in a meeting room in a special school in Southport, Merseyside on 23 February 2015.

The meeting had been called by Sefton Council as a part of their public consultation on post-16 Special Educational Needs and/or Disability (SEND) school/college transport. It was attended by just two parents, Janet and myself, who both had 15-year-old children with severe autism at the school. The meeting was not well-publicised, and many parents simply didn’t know about it.

The main focus of both the meeting and the Council’s consultation questionnaire, issued a couple of weeks previously, was their stated intention of promoting ‘independence’ for children with SEND. According to the Council, young people over 16 would be taught to travel independently to school or college through a ‘Travel Training’ scheme.

On the surface, it may all sound perfectly reasonable, even laudable….until you wake up from the seductive daydream of teenagers happily waiting at bus stops, and remember that our special school caters for severely disabled children. Paraplegic children in wheelchairs. Children with complex medical conditions. Children who are tube-fed. Children, like my own son, with profound learning difficulties who need constant supervision. What are the alternatives for these children, we asked. The reply was that there was none. Parents would have to take their children to and from school each day.

Again, this may not seem such a big deal…until you appreciate that special schools may well be many miles from the family home. Parents without a car might have long distances to travel each day by public transport, in some cases escorting a young person in a wheelchair. Some parents told us they would have to give up their jobs in order to take their children to school, which would cause them hardship. And these are families already under pressure, be it financial or stress or health related.

These issues gave birth to SOS Transport Sefton…although neither Janet nor I realised it at the time. We had a quick chat after the meeting and decided to write a letter to all the other parents to inform them of the impending transport cuts.

That was 23 February 2015….BUT on 23 April, exactly two months later, the Council stated publicly and unequivocally that they would NOT remove post-16 transport to special schools or colleges in Sefton.

So how was this achieved? These are the steps we took to persuade the Council to change its mind. Bear in mind that we spent virtually no money on this campaign.

What we did

We formed a committee

It’s always a good idea to team up with like-minded campaigners who share your goal. Janet and I were lucky enough to be joined by two very determined individuals, Bee and Sarah, also parents of teenagers with autism. We all brought different skills, strengths and experience to the group, and gave each other much-needed moral support.

We mounted a legal challenge

Bee had already approached a Public Law solicitor before joining our group. As it happened, the Council withdrew their proposal to remove transport before the case was brought, but the threat of legal action may have had a bearing on their decision.

We promoted our campaign on social media

We set up a Facebook page and a Twitter feed, to raise awareness of the Council’s proposals, and to give updates on our campaign. This proved to be enormously effective. We soon attracted over 200 followers on Twitter and garnered a similar number of ‘likes’ on Facebook. Social media were a crucial factor in the success of some of our later initiatives.

We launched a petition

We started our petition on 4 March, and gathered signatures both on paper and on-line. By the close of the public consultation period on the 30 March, in less than four weeks, 2,779 people had signed on paper and 2,559 on-line, totalling 5,338. This meant that our petition was eligible to be presented at a full Council meeting, because the number of signatures exceeded the threshold of 2,750.

We developed good relations with friendly local journalists

There was widespread coverage of our campaign in both print and on-line versions of local newspapers, for example here and here.

We organised a demonstration march

On 30 March, we held a peaceful demonstration march in Bootle, where Sefton Council is based, to hand in our petition. Around 35 people took part, mostly parents, with several children in wheelchairs who had been given leave of absence by one of the special schools in support of our cause. At Bootle Town Hall, we discussed the issue with Peter Dowd, Council Leader and Labour Party Parliamentary candidate for Bootle. 

We got political

….and we got lucky. When the Bootle based parent protesters got home after the demonstration, they found Labour’s General Election leaflet on their doormats. It showed Peter Dowd at Bootle Town Hall, where we had just left him, with a list of five pledges, including these gems:

  • Work with schools and colleges to give our young people the best start in life
  • Fight to get a fairer deal for the most vulnerable
  • Demand better environmental standards and protect our precious green spaces

This galvanised the four of us into action, and took our campaign into the political arena. Over the Easter weekend, we challenged Dowd on Twitter about the dissonance between his election pledges and his stance on disability transport as Council Leader. A ‘Twitter storm’ ensued, after which Dowd blocked all our Twitter accounts! We contacted the press, and the story appeared in the local newspapers. Details of the Twitter row can be found here and here.

We published an Open Letter on our new campaign blog

We resolved to continue to highlight the disparity between Dowd’s pledges and his actions as Council Leader by writing an open letter from the standpoint of a parent of a disabled teenager. We published the letter on a new campaign blog, runawaybus.

We promoted our blog on social media, and the day it was launched, it attracted 280 visitors and 395 views!

We sent a parody Consultation Questionnaire to every councillor in the borough

The questionnaire issued by the Council as part of their public consultation was not fit for purpose. Couched in language more reminiscent of a teenage magazine quiz than a serious survey, it appeared to have been designed to dupe the respondent into giving the answers that the Council wanted.

We hit on the idea of giving the Council a taste of its own medicine by writing a parody consultation questionnaire and emailing it to 70 Sefton councillors and council officers! The parody version was written in the same style as the offending original, and was humorous, but hard-hitting.

We issued a press release

We collected over 100 email addresses for national newspapers and other news outlets, and on 20 April we issued a press release. Later, we were contacted by BBC Radio Merseyside and the next day…..

We got on the radio

Bee was interviewed for several minutes on BBC Radio Merseyside, and put our case very persuasively. A clip of a pre-recorded interview with Sarah was also broadcast. Our story was featured as first or second item in every news bulletin that day, and the radio station also invited a spokesperson from the National Autistic Society to discuss it.

We wrapped it up at meetings with the Council

On the day of the radio broadcast we had a private meeting with Peter Dowd and two Council officers. They gave us a categorical assurance that there would be no cuts to disabled transport to any of Sefton’s special schools or colleges.

On Thursday 23 April we presented our petition at a full Council meeting at Southport Town Hall. In response, Leader of the Council Peter Dowd gave an assurance, on the record, that there would be no cuts to transport to any special schools or colleges in Sefton. He also acknowledged the flaws in the consultation process which we had highlighted, and invited us to assist in efforts to improve the way future consultations are carried out.

So, on St George’s Day, two months to the day from the birth of our campaign, the dragon of cuts to transport to specialist provision was finally slain, and the worry caused by the threat of removal of this vital service laid to rest.

A few days later, we issued the following public statement.

Lessons we’ve learned

We’ve learned a lot over the past few weeks, and hope that some of our ‘top tips’ may help others embarking on campaigns against injustice:

  • Know that if your sense of justice has been offended, there will be others who share your outrage and anger. In the twenty-first century, we have an enormous advantage over campaigners from previous generations because the internet gives us the tools to link up very quickly with like-minded people. It’s quite straightforward to set up a Facebook page, a Twitter feed, even an on-line petition; yet these simple steps can be very empowering because they bring people together and provide a focal point for opposition.
  • Don’t try to run the campaign on your own. Find a few other people to share the decision-making, organisation and work. You’ll probably come up against vested interests, underhand tactics and intimidation, and you’ll need moral as well as practical support.
  • Don’t under-estimate your individual strengths; you may have experience of writing or public speaking, perhaps a social media presence or other useful attributes. When these resources are pooled, the resulting synergy can make the difference between success and failure of your campaign.
  • Publicity is the oxygen your campaign needs to flourish and succeed. Make contact with journalists via social media, where it might be possible to develop an informal, friendly relationship. Maximum coverage for your story in the local press will both attract supporters and put pressure on the authorities you’re campaigning against. Consider issuing a press release to reach a wider audience.
  • Take your chances and be bold. When opportunities present themselves, seize them. In our case, the upcoming General Election made the bad publicity we created for a local candidate decidedly inconvenient. You can’t guarantee lucky breaks, but if a gift horse does happen to wander across your path, jump on and ride!
  • Have fun! The issues you are facing may well be very serious, but confronting them and taking back some control over the situation will probably be therapeutic and make you feel a whole lot better. You may discover skills you never knew you had, or learn new ones, grow in confidence and find new friends. A sense of common purpose can break down barriers and forge bonds between people who may not otherwise have had the opportunity to get to know each other. Even if your campaign does not achieve what you hope it will, you may find you reap other unforeseen benefits and rewards. Set your sights on your destination, but don’t forget to enjoy the journey.

Joanne Allman
With input from Bee Jones

SOS Transport Sefton

Twitter: @SOS_Sefton

Email: sostransportsefton at gmail dot com

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.

The Bubb report – forget boat rocking, we need boat breaking

As you may have noticed from the blanket media coverage it received, the report of the Transforming Care and Commissioning Steering Group, chaired by Sir Stephen Bubb of ACEVO, was published yesterday (Wednesday 26 November).

Is the issue the Bubb report covers, the need to transform the commissioning of services for ‘people with learning disabilities and/or autism’ important? Of course, it’s absolutely critical if we want to stop disabled young people dying in state ‘care’. Does this report merit such a level of attention? No; in my view it is in no way likely to lead to the change that is required.

To justify this criticism we need to step back a moment and consider the scale of the problem. Is is now generally accepted that people with learning disabilities ‘and/or autism’ should not be in institutions. Yet thousands are; whether in the kind of formal institutions which go by the name of ‘Assessment and Treatment Unit’, or in informal settings which might call themselves care homes or ‘supported living’ but do not support the person to be a part of their community and society (see the ‘We Have The Right’ statement from people with learning disabilities working with CHANGE at Appendix 2 to the report). In the worst cases, like Connor’s case or Stephanie’s case, people in these institutions die.

What is the proper response to this situation? In my view it must be actual system change. The title of this blog post is taken from a comment on Twitter by the wonderful @Ermintrude yesterday, shortly after the Bubb media deluge began. Forget boat rocking, we need boat breaking. This is very similar to something else said on Twitter by a professional a while back – the system is so broken that people are dying.

The truly radical solutions are out there. For example, we could give every disabled person in an institution a guaranteed personal budget, with a minimum level of funding fixed generously for a long period so that a proper bespoke package of ‘care in the community’ can be commissioned for them – as Chris Hatton has suggested along with lots of other brilliant ideas in this post.

So how does the Bubb report measure up? Well in my view it comes nowhere close to the kind of approach which might actually achieve real change. It is simply more of the same – more encouragement to commissioners to commission decent services, more support to providers, more non-specific focus on the ‘rights’ of disabled people and families. Chris Hatton has explained brilliantly and at great length why the report is so inadequate. As #IagreewithChris I’m not going to waste your time repeating his criticisms – but please do read them.

I want to focus on two related things – the tone of the report and its recommendations relating to the law.

Turning first to the tone – in my view the Bubb report doesn’t begin to address the outrage of present practice in this area. For a shining example of the right tone, check out this blog from Alicia at the Housing and Support Alliance, responding to the inquest verdict in Stephanie Bincliffe’s case. Alicia’s main point seems to me to be this – if you aren’t capable of commissioning or providing care which respects disabled people’s human rights then go and get another job.

As Neil Crowther puts it on his blog, ‘The difference between institutionalisation and independent living is the difference between abusing human rights and respecting them.’ Where human rights abuses are going on people perpetrating them need to be told to stop doing so in simple terms – not offered a range of incentives to encourage them to do things properly. As Neil says, ‘We need to name this treatment for what it is: not poor quality care as though we were simply talking about a matter of customer service. Such experiences amount to the gravest of human rights violations.’

Sir Stephen’s report suggests at 1.5 that ‘there are doubts about whether the rights of people with learning disability (not ‘and/or autism’ this time) are being respected in practice as originally intended’. No there aren’t – there is no doubt that they are not. How many deaths would be necessary to remove any doubt?

So given that grave human rights violations are being perpetrated, what does the Bubb report say about the law reform that might stop this? Answer – not much – 3.5 pages to be precise. There are four recommendations under the heading ‘Strengthening Rights’ – set out in bold below, taken word for word from the report, with my comments following:

  1. The Government should draw up a Charter of Rights for people with learning disabilities and/or autism and their families, and it should underpin all commissioning. This isn’t about strengthening rights at all – it’s about making people aware of their existing rights. This is a good thing – but it doesn’t address the bigger issue, which is whether those rights are sufficient. I don’t think they are – and nor do the hundreds of disabled people, family members, professionals and allies that have pledged their support as individuals and organisations for the principles of the draft LB Bill. Nor does publishing a Charter do anything to actually make the rights contained within it real. For rights to become reality disabled people need access to advocates and lawyers, the latter funded by legal aid. The Bubb report has nothing to say about the mechanics of rights enforcement – other than noting at 1.4 how important access to an advocate or lawyer can be. Where is the analysis of whether the right to advocacy in the Care Act 2014 will address the problem from next April?
  2. People with learning disabilities and/or autism should be given a ‘right to challenge’ their admission or continued placement in inpatient care. People already have a right to challenge unlawful placement decisions – it’s called the right to apply for judicial review. The issue is on what legal basis such a challenge could be brought. This is why clause 4 of the draft LB Bill proposes that the state should be required to make the ‘most appropriate’ living arrangements for any person who is being moved from their home. We are suggesting that the law should require that in reaching this decision the starting point should be what the disabled person themselves wants. A disabled person or family member could then challenge in court the decision of the Local Authority or NHS as to which arrangements would be ‘most appropriate’. Sir Stephen’s ‘right to challenge’ goes some way towards this. It is said at 2.2 that ‘the review triggered by this right to challenge would only recommend admission/continued placement in hospital [note – only in hospital, apparently] if it concluded that the assessment, treatment or safeguarding could only be effectively and safely carried out in an inpatient setting.’ My concern is that this medical approach would lead to disabled people’s own wishes and feelings being ignored. The right to challenge in the Bubb report therefore seems to me to be less of a right that the best interests duty already imposed by section 4 of the Mental Capacity Act 2005, which following the Supreme Court’s judgment in Aintree University Hospital v James already requires significant weight to the views of the disabled person (although not enough weight – see LB Bill clause 7 for what we suggest it should say). I also note that that in the Bubb report at 2.3 it is suggested that where disabled people do not ‘feel able to challenge the decisions taken regarding their care’ this is a role for commissioners. This is, with respect, hopeless. It is the commissioners who have responsibility for arranging inappropriate care in the first place. The proper response to this problem has to be highly skilled independent advocacy for the disabled person coupled with real support (including legal support) for family members.
  3. NHS England should extend the right to have a personal budget (or personal health budget) to more people with learning disabilities and/or autism, along with support to manage those budgets. No problem with this – although personal budgets are only useful to the extent that sufficient services are available in the community to buy with them (see draft LB Bill clause 3).
  4. The Government should look at ways to protect an individual’s home tenancy when they are admitted to hospital. This is an excellent idea – but isn’t it a function of a report such as this to make recommendations as to how this should actually be done, not merely to flag it as an idea for further consideration?

The legal section of the Bubb report is therefore rather like the rest – more of the same, rather than any kind of prescription for radical change. It also appears to suffer from the absence of specialist legal input. There is no proper consideration at all of the current legal framework and the levers it creates – for example, as Chris Hatton has noted, where is the read-across to the Autism Act 2009? This omission is particularly surprising as the Government is currently consulting on revised statutory guidance, which is how that Act gets any teeth. There is no consideration of the dysfunctional interface between the NHS and social care, or the impact of the fragmentation of the NHS under the Health and Social Care Act 2012, or of how either of these elephants in the room could be addressed.

Sir Stephen was properly criticised for his failure to engage with disabled people in the production of his report – although it appears some steps were taken on this. It’s a shame though that he doesn’t appear to have involved any lawyers – a group not normally noted for their social exclusion.

If you share any of the frustrations I have expressed above about the Bubb report, please visit the LB Bill blog and tell us how you think the law should change so the boat doesn’t just rock but finally breaks. We are thinking hard now about all the ways the second draft of the Bill could be improved. One idea which self-advocate Andrew Lee put forward very strongly at the fantastic meeting with disabled people’s organisations last week was that individuals and organisations need to be punished when things go badly wrong. Please share your thoughts on this and any other ways in which you think the law could and should change.

The group working on the Bill also met the Minister last week and it is clear the Government are listening. As well as promoting the Bill, we all have a chance to influence the Government’s ‘Green Paper’ (proposals for legal changes) which should come out in the new year – and will hopefully go way beyond the Bubb report.

#JusticeforLB

#JusticeforalltheDudes

Care Act 2014 – first thoughts on eligibility – a ‘moderate’ success?

The regulations and guidance for the Care Act 2014 were published at the back end of last week. Taken with the government’s response to the consultation (.pdf) and impact assessment (.pdf) they easily fill a lever arch file. So much for our more accessible new system of adult social care.

Rather than make a frontal assault on this mountain of paper, I thought I’d creep up on it and take a few of the key themes by surprise – starting with eligibility (disabled people – carers to follow). My conclusion on this central issue is that although government has intended to make the new system roughly as restrictive as the present system, I’m not at all sure they have succeeded. I read the new scheme as being significantly more generous than the present ‘substantial’ band operated as the eligibility floor by the vast majority of local authorities at present. It may therefore be that the deluge of protests when the tweaked eligibility regulations were published, although fully justified, was somewhat misplaced.

When the Care Act comes in to force next April, eligibility for adult social care will be governed by the Care and Support Eligibility Criteria Regulations 2014 (see p14 of the .pdf), made under section 13 of the Act.

Taking the Act first, section 13(1) requires that ‘Where a local authority is satisfied on the basis of a needs… assessment that an adult has needs for care and support…, it must determine whether any of the needs meet the eligibility criteria’ – so there must be a decision on eligibility in each case.

Sub-section 3 then requires the local authority to consider what can be done to meet the needs of disabled people and to ascertain whether they are ordinarily resident in the local authority’s area – so triggering the duty to meet their needs in section 18.

Sub-section 7 provides that needs meet the eligibility criteria if ‘they are of a description specified in regulations’ – so the regulations are all important, as the Act itself is silent as to what the eligibility criteria might be.

Turning then to the regulations – Regulation 2 deals with disabled people’s eligibility. It imposes three requirements for a need to be eligible for support:

  1. It must arise from or be related to a physical or mental impairment or illness – unlikely to be controversial in most cases but may be a problem for some older people whose needs result from their advanced age.
  2. It must lead (in combination with any other needs) to the person being ‘unable’ to achieve two or more of the specified outcomes listed below (but ‘unable’ doesn’t really mean unable, as explained below).
  3. These outcomes not being achieved must have a significant impact on the adult’s well-being.

So 2 and 3 are the issue. Taking them in turn:

  • The list of outcomes is very broadly drawn. It covers managing and maintaining nutrition; maintaining personal hygiene; managing toilet needs; being appropriately clothed; 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 including public transport, and recreational facilities or services; and carrying out any caring responsibilities the adult has for a child.
  • Importantly, the term ‘unable’ in relation to the achievement of the specified outcomes does not have anything like its ordinary meaning. Under regulation 2(3), a person is ‘unable’ to achieve an outcome if they need assistance to achieve it, if they can achieve it without assistance but doing so causes them ‘significant pain, distress or anxiety’ or is likely to endanger the health and safety of the adult or another person – or even if it simply takes them ‘significantly longer’ to achieve the outcome than would ‘normally be expected’ (answers on a postcard as to how that will be measured). As such the real question is whether the disabled person experiences significant difficulties in relation to the areas of life identified in the specified outcomes – if yes, they will be eligible for support to achieve those outcomes.
  • There will be some cases where the person’s needs result in them being ‘unable’ to achieve only one of these outcomes – for example, as case like Mrs McDonald’s where the primary and perhaps sole need relates to night-time toileting. In these rare cases the local authority may have to exercise its powers to go beyond the eligibility framework in order to provide services which are consistent with disabled people’s human rights. However – most disabled people who have difficulties maintaining personal hygiene will also need help with dressing. Many disabled people who experience barriers to work will also need help to develop personal relationships (NB – the inclusion of ‘developing’ relationships as an eligible outcome is a big win for the National Autistic Society’s ‘Careless’ campaign). So in reality I’m not sure (despite the modelling that has been apparently been done) how much of an additional hurdle is created by requiring difficulties in achieving two or more outcomes rather than just one.

So how does this compare to the present picture? Under the current statutory guidance, Prioritising Need, local authorities can set their eligibility threshold at one of four bands – ‘critical’, ‘substantial’, ‘moderate’ and ‘low’. Most local authorities meet ‘critical’ and ‘substantial’ need – indeed the government’s stated intention is for the national eligibility threshold to mirror ‘substantial’.

So in order to see if this has been achieved, we need to consider the current ‘moderate’ band. The ‘moderate’ needs are as follows:

  • There is, or will be, an inability to carry out several personal care or domestic routines;
  • Involvement in several aspects of work, education or learning cannot or will not be
    sustained;
  • Several social support systems and relationships cannot or will not be sustained; and/or
  • several family and other social roles and responsibilities cannot or will not be undertaken.

It seems to me that a person with any of these levels of need would be likely to be eligible for care and support under the new system. Take personal care – to have ‘moderate’ needs at present you must be unable to carry out ‘several personal care or domestic routines’. So under the new system this would relate to the outcomes of ‘maintaining personal hygiene’, ‘managing toileting needs’, ‘maintaining a habitable home environment’ etc. ‘Several aspects of work, education or learning’  in the ‘moderate’ band translates to ‘accessing and engaging in work, training, education or volunteering’ – although under the new system you just have to show difficulty in achieving this outcome, not that ‘several aspects…cannot or will not be sustained’. ‘Social support systems and relationships is equivalent to ‘developing and maintaining family or other personal relationships’ – although again, there is no need to show that ‘several’ systems and relationships ‘cannot or will not be sustained’. This outcome would also cover ‘several family and other social roles and responsibilities cannot or will not be undertaken’ – although here we also have the specific new outcome in relation to disabled parents, which is very welcome.

So try as I might, I am struggling to see how a person properly assessed as having ‘moderate’ needs at present would not be deemed eligible following a proper assessment under the new system – except in the rare case where they only have one such need. In fact, it may be that many people properly assessed at present as having ‘low’ needs will also be eligible under the new system. For example, the ‘low’ personal care need is ‘there is, or will be, an inability to carry out one or two personal care or domestic routines’. If the two personal care routines which can’t be carried out are ‘maintaining personal hygiene’ and ‘managing toileting needs’ then that person’s low need will be eligible – assuming the other tests are met.

It is important to note that under ‘Prioritising Need’ (and its predecessor, Fair Access to Care Services), there is no qualification on the terms ‘unable’ or ‘cannot be sustained’ – they have the ordinary English meaning, which is a much stricter meaning that the definition in the Care Act regulations. This is another pointer that eligibility under the new system should be more generous than the existing system – if operated properly in accordance with the regulations.

This all assumes that I am correct that the main additional requirement, being that the ‘inability’ to achieve the outcome will have a ‘significant impact on the adult’s well-being’, is not a real additional barrier in most cases. This in turn assumes that there will be proper and accurate assessments of disabled people which are faithful to the eligibility criteria – a major assumption. I will turn to the new assessment duty in a later post.

What does the new Care Act guidance add to this picture? Assessment and eligibility are dealt with under chapter 6, with consideration of eligibility from 6.100, p96. Key points include:

  • A reminder that local authorities can meet non-eligible needs if they choose to do so (6.100) – though in the current financial climate this is more theoretical than real.
  • ‘Inability’ to achieve an outcome includes a situation where prompting is required; 6.106.
  • Examples of circumstances where each outcome is not being achieved are given at 6.107. As an example, ‘maintaining a habitable home environment’ is said to involve consideration of ‘whether the condition of the adult’s home is sufficiently clean and maintained to be safe. A habitable home is safe and has essential amenities.’ We will no doubt see if the courts agree with this definition of ‘habitable’ in due course.
  • Importantly, ‘significant impact on well-being’ should be considered cumulatively in relation to all the outcomes (6.109), increasing the likelihood that this threshold will be reached in any given case. The term ‘well-being’ is of course defined in section 1 of the Care Act and will be the subject of a future blog post as it is centrally important to the whole Care Act scheme.
  • ‘Significant’ is not defined in the regulations and so has its everyday meaning; 6.110. Unhelpfully, the guidance does not tell us what the Secretary of State thinks that meaning is. I would suggest ‘significant’ means ‘more than minor or trivial’ – so not a particularly high threshold.
  • 6.114 contains case study examples – the case study of ‘Dave Brown’ is an adult with autism who spends a lot of time online, is engaged in work and ‘has access to those personal relationships that he considers essential’. As such ‘Dave’ is not eligible because the difficulties he is experiencing do not have a significant effect on his well-being. This may well be correct – however it seems to me that a person with autism who was experiencing only slightly greater difficulties than ‘Dave’ would have to be deemed eligible under the new scheme – note work’ and ‘personal relationships’ meet the required two separate outcomes.
  • The eligibility decision has to discount any care that may be provided to the disabled person, looking at what needs would be if no support provided; 6.119.

So after consideration of the new scheme on eligibility I am left hopeful that, despite the apparent intention, the regulations will create a broader eligibility for adult social care than the present ‘substantial’ band. If this doesn’t prove to be the case in practice, disabled people whose needs are deemed ineligible will be able to seek redress through an application for judicial review if there is a legal issue in play – as there undoubtedly will be in many of the earlier cases.

More to follow when I’ve had a go at approaching the mountain of regulations and guidance from a different route.

Direct payments – don’t get fooled by personalisation

I’m sceptical about personalisation. The principle of disabled people and families having choice and control over care arrangements is unarguably right. However in practice I see personalisation delivering two bad things. Firstly, personalised approaches are used to transfer risk and responsibility for care from the state to disabled people and their carers. See the brilliantly titled paper by Prof Luke Clements, ‘Individual Budgets and irrational exuberance’. As Mark Neary put it yesterday in his alternative social care dictionary; ‘Personalisation – Phew, got rid of another annoying statutory duty.’ By way of example, people who use direct payments to employ their own Personal Assistants must make arrangements for tax, National Insurance contributions and statutory sick and maternity pay – as they become employers. Is that something most people would want to take on?

Secondly, personalisation is used as a cover for cuts. It seems to be far easier for local authorities to tell people their personal budget is being reduced by 20% than to tell them that the service they were receiving on five days a week is now only to be provided on four. It’s even easier to change the way your Resource Allocation System generates an ‘indicative’ budget (more on RASes below) to reduce this figure in a way that disabled people and families will struggle to understand. None of this is lawful if the service / funding is being provided in discharge of the CSDPA duty, because the CSPDA requires eligible needs to be met in full – but that doesn’t stop it happening across the country.

Saying all this though, I recognise that for some disabled people and families with disabled children the right to a direct payment has led to a massive improvement in their lives. Despite all the rhetoric of personal budgets, to my mind it is direct payments which still matter – they are the mechanism by which money actually moves from the state to disabled people and families. In the best areas, direct payments have killed the culture of the one-size-fits-all service which previously existed and led to real innovation in the services available to disabled children and adults. In the best areas.

Personalisation is often seen as a law-free zone. In Control once published a paper with the (in my view) shocking title ‘Don’t be fooled by the law. However unsurprisingly the allocation of state resources to individuals through direct payments is in fact covered by a significant amount of law and guidance. I’ve already written about the new SEN direct payments under the Children and Families Act 2014. The problem with these is that, in short, the local authority is not allowed to make an SEN direct payment if to do so would lead to additional costs. In health, there is a new right to a personal health budget from 1 October 2014 for children and adults who are eligible for NHS continuing healthcare – but as far as I can tell it is up to the NHS in every case whether to make a direct payment. See para 7.2 of this guidance on the right to have a personal health budget which suggests health direct payments can be refused if they are ‘impracticable or inappropriate’. The detailed guidance on health direct payments confirms that health direct payments can be made when they are appropriate for the individual and represent value for money – but this does not mean that in any case they must be made.

So the right to a direct payment is most real in social care – and works in essentially the same way for disabled children and disabled adults. Links to the law follow – with the usual health warning that some may not have been updated with relevant amendments. The links should at least give the basic statutory scheme.

The key statutory provision (until next April at least when the Care Act 2014 comes into force for disabled adults) is section 57 of the Health and Social Care Act 2001, which requires that direct payments must meet the ‘reasonable cost of securing’ the necessary service. The duty to make direct payments when services are being provided to disabled children stems from section 17A of the Children Act 1989. Adults who lack capacity in relation to relevant decisions about direct payments now have a right to them under section 146 of the Health and Social Care Act 2008.

Under the Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009, social care direct payments essentially must be offered in any case where the disabled person or family is capable of managing them, either alone or with available help. The way in which social care direct payments should operate is governed by statutory guidance with the snappy title Guidance on direct payments for community care, services for carers and children’s services: England 2009.

From this statutory scheme we can construct some answers to questions that might arise where local authorities neglect the fact that the right to direct payments is carefully defined in law. Here are some of the questions that I have been hearing recently about direct payments, and my general answers – although of course, any individual case needs careful fact-specific advice:

  1. Do I have to accept a direct payment? No. Direct payments are a right in social care (absent exceptional circumstances) but they are also a choice. If the disabled person or family don’t want to deal with a direct payment, they are entitled to say that they would prefer a service to be provided to meet the eligible needs. Of course, they will then need to negotiate with the local authority as to what service is to be offered – and providing it meets the need, the local authority is not obliged to fund a more expensive service when a cheaper one is available. However no disabled person or family should ever be forced to accept a direct payment. See the guidance at para 15; ‘A person does not have to accept direct payments; if they wish, they can choose instead to receive services that are provided or arranged by the
    council.’ The guidance emphasises the need for support services and advocacy so that the choice as to whether to have a direct payment is a fair one in every case.
  2. How should the amount of direct payment be set? Direct payments should be set in each case at the amount that the local authority considers will meet the reasonable cost of securing the necessary services for that person. That assessment by the local authority has to be informed by the evidence, including the assessment and the service plan, setting out what services the authority considers would be sufficient to meet the eligible needs. In order to comply with the statutory duty the local authority has to assess the disabled person’s needs, determine which are eligible for support, decide which services would be sufficient to meet those needs and then work out what that package of services would cost. That is the sum of money which should be offered as a direct payment – although of course what the disabled person or family choose to buy with that money is (within reason) up to them (see below). See the guidance at para 111 onwards for more detail about how the amount of direct payments should be set. Importantly the guidance emphasises at para 114 that ‘councils should include associated costs that are necessarily incurred in securing provision, without which the service could not be provided or could not lawfully be provided’ – for example recruitment costs, National Insurance or VAT. If you’re going to take on the state’s employment responsibilities it’s reassuring to know the state is obliged to fund them.
  3. Can a local authority have a fixed direct payment rate with no exceptions? No. Local authorities can’t ever operate blanket policies (unless the policy just reflects a legal rule) – they must always at least consider exceptional cases. However here we have a clear statutory duty which states that the amount of direct payment must mirror the cost of services to meet the individual disabled person’s needs. So a local authority could not have a fixed hourly rate of (say) 9.50 per hour for a carer – because some disabled people may need a more specialist service with greater cost. In my view it is doubtful whether even a typical rate with more allowed in exceptional cases is lawful, because this may not allow the case-specific focus which the law requires.
  4. Can a local authority use its RAS to determine the amount of money offered as a direct payment? No. Prior to the Supreme Court’s judgment in KM v Cambridgeshire CC, in my experience local authorities were routinely using their Resource Allocation Scheme (RAS) to determine the amount to be paid by way of a direct payment in any particular case. A RAS, put shortly, is a mechanism by which needs can be translated into sums of money using the rough cost of meeting similar needs in the area. What this skips out is the essential step of working how much it would cost to provide services to meet the particular needs of the individual disabled person. This is why the Supreme Court in KM made clear that RASes can only be used to create a ‘starting point’ or ‘ballpark figure’ – more formally, an ‘indicative allocation’ at the start of the process. So the RAS could generate a sum of say 120.00 – but the essential next step is to develop a support plan to see how much it will actually cost to meet the disabled person’s needs and then (inevitably) increase the sum allocated to comply with the legal duty. See a detailed critique of the use of RASes by Prof Luke Clements and Lucy Series for more reasons why their use is problematic – but confined to the role prescribed by the Supreme Court in KM their use is lawful.
  5. Can a local authority refuse to allow direct payments to be spent on anything other than personal assistants? No. The whole point of direct payments is to allow flexibility in the way in which care is provided and arranged. As the statutory guidance says ‘a direct payment gives the service user flexibility to look beyond ‘off-the-peg’ service solutions at options that may include employment, education and leisure activities as well as personal assistance to meet their assessed needs.’ It is totally unacceptable in 2014, when direct payments have been around since 1996, that local authorities still seem to be asserting unlawful limits on direct payment expenditure. See also para 14 of the guidance; ‘Direct payments do not have to be used in the same way as if support was being provided directly by the council. Indeed, they are intended to give the individual the maximum degree of choice and control over how their eligible
    needs are met.’ Finally see para 90; ‘In discussions with individuals about how their needs might be met through
    direct payments, councils should be prepared to be open to new ideas and be as flexible as possible’ and para 92, ‘Conditions [on the use of direct payments] should be proportionate and no more extensive, in terms or number, than is reasonably necessary.’ So why are these rigid rules about what direct payments can be spent on still in place?
  6. Does a direct payment have to be enough to cover things like transport and activity costs? Generally, yes. To repeat – the amount of direct payment should meet the reasonable cost of securing the necessary service to meet the disabled person’s needs. So if the service is intended to meet a disabled person’s needs in relation to social isolation, the ‘necessary cost’ of securing this service will include the cost of getting there and the cost of securing admission. Both transport and activity costs are covered by the CSDPA duty and so must be met where this is necessary to meet the person’s needs. The guidance helpfully emphasises that ‘Some people might use their direct payments to facilitate better social inclusion, others to aid their general well-being, for example through fitness classes or arts and cultural activities.’ The only situation where a direct payment need not cover these costs is if the local authority can reasonably conclude that it is not necessary for it to provide these services because they can be met another way. However that would need to be a rational decision based on the evidence in a particular case. For example, a blanket policy that transport costs will not be met via a direct payment because they can be paid for through state benefits will be unlawful.
  7. Can the local authority refuse to allow direct payments to be spent on a particular service on grounds of risk? Yes – but only if there has been careful assessment in the individual case. As the guidance emphasises at para 97; ‘Support planning involves allowing people to make their own informed decisions – including decisions about risk. Councils have a responsibility to ensure that, wherever possible, the choices made by the individual are respected and supported. The benefits of increased autonomy and social inclusion may have to be weighed against the risks associated with particular choices.’ This reflects the requirement to respect disabled people’s rights to private life, dignity and autonomy under Article 8 ECHR.
  8. Does there still need to be a care plan when support is being provided via a direct payment? Yes. See the guidance at para 98; ‘Councils are reminded that there should always be a care plan, a written copy of which should be given to the individual. This advice applies equally where people direct their own support or where the council directly
    provides or arranges services.’ There is an obvious reason why this is so important – if there is not a written plan setting out which services the local authority considers necessary to meet the person’s needs, how can anyone tell whether the amount of the direct payment is sufficient?

I hope this myth-busting exercise is some help. If personalisation is going to have benefits for disabled people and families as a policy approach it needs to be operated in accordance with the law. Disabled people and families must not get fooled by personalisation. Whether eligible needs are met through services or money the law requires that they are met properly and in full.

Please post any comments and general questions about the law on direct payments below and I will address those which are not case specific. For case specific issues I suggest contacting a specialist solicitor. While low level disputes around direct payments should be resolved through the local authority complaints process, serious disputes may require an application for judicial review.

School transport – no right to education if you can’t get there

This post was edited on 12 March 2015, including to clarify the definition of an ‘eligible’ child and the requirements of a post 16 transport policy statement. Links to the legislation have also been added.

School transport in general and transport for children with SEN in particular forms a massive part of Local Authority expenditure. I know of at least one Local Authority where expenditure on SEN transport exceeds the amount spent on SEN provision – by some way. So at this time of austerity it is unsurprising that Local Authorities are eyeing up their school transport budgets and seeking to bring them down. Unfortunately, too often this is being done without any proper understanding of the relevant statutory duties – the subject of this blog.

Compliance with the law on school transport is not helped by it being so blinking complicated. I have totted up at least four statutory provisions which might be relevant to the question of whether a child or young person receives help from their Local Authority to get to school. Each of these form part of the alphabet soup of sections found after section 508 of the Education Act 1996 – a soup created through lots of later amendments to that Act. The key statutory provisions (all in Part IX, Chapter II) follow. Although legislation.gov.uk has not yet updated all these sections of the 1996 Act, you can see the amended sections through the Act that introduced them, the Education and Inspections Act 2006 and the Apprenticeships, Skills, Children and Learning Act 2009.

  1. Section 508B – this requires Local Authorities to secure ‘suitable home to school travel arrangements’ for ‘eligible’ children of compulsory school age (5-15, ie not 16 and 17 year olds – see 3. below). Importantly these arrangements must be provided free of charge – see sub-section (1). Any arrangements must be ‘suitable’, i.e. appropriate for the individual child taking account of any particular needs they have. Schedule 35B to the 1996 Act sets out who ‘eligible’ children are – importantly, paragraph 2 of this Schedule says that disabled children and children with SEN of compulsory school age who live within the walking distance (two or three miles depending on age) but ‘cannot reasonably be expected to walk to school’ are all ‘eligible’. Paragraph 3 makes children ‘eligible’ if they attend a school outside the walking distance, so long as it is the nearest suitable school. So in most cases (unless, for example, the parents have chosen to send their child to a school which is not the nearest suitable school) disabled children and children with SEN will have a right to free suitable school transport up to the age of 16 unless they can reasonably be expected to walk to a school close to home themselves. There is helpful statutory guidance on the school transport duties to ‘eligible’ children.
  2. What about children aged 5-15 who are not ‘eligible’? The Local Authority has a power to provide school transport for any child under section 508C (scroll down the link) of the 1996 Act. The Local Authority must at least think about exercising this power in every case and must exercise it in some cases – otherwise it is fettering its discretion. However, by virtue of it being a power it will be much harder to force a Local Authority to make transport arrangements under section 508C. Moreover unlike transport provided to ‘eligible’ children arrangements made under section 508C do not have to be made free of charge. Section 508C could also be used to obtain transport for children below compulsory school age, i.e. the under 5s, where this transport is necessary for them to access education.
  3. What about children aged 16 and 17? It seems to me there is a gap in the law here which is potentially discriminatory. 16 and (shortly) 17 year olds are now expected (indeed obliged) to participate in education or training. However the duty to provide school transport under section 508B applies only to children of ‘compulsory school age’. The definition of this term is found in section 8 of the 1996 Act – and it clearly says that this term covers only children aged 5-15. Children aged 16 and 17 are covered by section 509AA of the 1996 Act (warning – section not fully up to date with later amendments). This requires every Local Authority to publish a transport policy statement for ‘persons of sixth form age’. Importantly, this statement has to include ‘arrangements for facilitating the attendance [at schools or colleges] of disabled persons and persons with learning difficulties or disabilities’, see section 509AB (warning – section not fully up to date with later amendments). However, section 509AA does not itself create a duty or power to provide transport – it therefore seems to me that the statement it requires is dealing with circumstances when the Local Authority should exercise its section 509C powers in relation to these older children. In setting this policy, the Local Authority will need to have due regard to the need to advance equality of opportunity for disabled learners – as required by section 149 of the Equality Act 2010, the public sector equality duty (see further below). However this is not as good as being covered by the section 508B duty – not least because, as we have seen, ‘eligible’ children under that duty are entitled to suitable transport free of charge. The statutory guidance on post 16 transport is very helpful on the need for the transport policy statement to deal properly with the particular transport requirements of disabled learners.
  4. What about young adults, who are now within the remit of the SEN system by virtue of the reforms under Part 3 of the Children and Families Act 2014 (particularly those who have or will have EHC Plans)? Their transport needs should be met under section 508F of the 1996 Act, which requires Local Authorities to make ‘such arrangements for the provision of transport as they consider necessary’ for adult learners. So if it is ‘necessary’ for a young person over 18 to receive help with transport to get to school or college, then there is a duty on the Local Authority to provide this. Further, assistance under section 508F must also be provided free of charge – see sub-section (4).

So it is clear that the nature and extent of the duty to provide school transport depends not only on the child or young person’s needs but also on their age. As set out above, I’m troubled by this, particularly what seems to me to the less favourable treatment of young people aged 16-17, not just compared with younger children but also compared with those over 18. However in general it should be possible to use these provisions to obtain suitable transport for any child or young person who has a genuine need for help to get to school. Any transport policy being operated by a Local Authority which makes this impossible will be highly likely to be unlawful.

It is also important to remember that there can be a social care duty to arrange transport which helps a disabled child or young person access education. Unsurprisingly, this duty is found in section 2 of the Chronically Sick and Disabled Persons Act 1970 – see further on the CSDPA here. In particular, section 2(1)(c) requires Local Authorities to provide ‘assistance to [a disabled person] in taking advantage of educational facilities available to him’. This duty arises where it is ‘necessary’ for a Local Authority to provide a service under the CSDPA to meet a person’s needs. As such, there will be no CSDPA duty if in fact the disabled child or adult is able to obtain transport to access education under the Education Act 1996 duties and powers described above. However if there is a gap in the 1996 Act scheme and a need for transport to education cannot or will not be met under that legislation, then the CSDPA duty operates as a safety net. From 1 April 2015 however the CSDPA is repealed in relation to those over 18 and entitlement to transport will then be an issue of eligibility under the Care Act 2014.

How about the case, common at present, where Local Authorities are attempting to tighten their eligibility criteria for school transport as part of the cuts? Obviously any new policy has to comply with the law above, but what about other relevant legal considerations? Firstly, it is virtually certain that any Local Authority attempting to change its transport policy will have to consult in advance with affected families, and do so properly – see the guidance from the Supreme Court on consultation. Secondly, all cuts decisions must be taken in accordance with the public sector equality duty in section 149 of the Equality Act 2010, which requires ‘due regard’ to be given to a series of specified needs. The most relevant need in such a case is likely to be the need to ‘advance equality of opportunity’ for disabled people compared with others (see section 149(1)(b)). It is still possible for a Local Authority to pay ‘due regard’ to this need while cutting an important service, but it must first have understood how many disabled people will be affected, analysed what the impact will be and considered any ways in which the impact could be mitigated or avoided (all of this comes from the extensive case law on the section 149 duty). This places a heavy burden on Local Authorities who are seeking to cut services which are valued by disabled people, and one which is all too often not properly discharged.

Families who are concerned about current transport policies or proposed cuts to services which may be unlawful should seek advice from a specialist solicitor as soon as possible.

Comments on this tricky legal area most welcome below.

Short breaks for family carers – when enough is enough

I was always a big fan of Mencap’s Breaking Point campaign, but it was always appalling that it was needed. How as a society do we let families caring for disabled children and adults reach the point where they can no longer carry on? It shames us all that just last year 8 in 10 families caring for a loved one with a learning disability could describe themselves as at breaking point.

It is not surprising that the law requires the state to support family carers such that this breaking point is never reached – indeed, it would be a scandal if it didn’t. So, in answer to the question from @BendyGirl on Twitter this evening, here are some of the legal duties families can use to get short breaks and any other essential support they need in their caring roles.

  1. The social care duties. I’ve already blogged about how section 2 of the Chronically Sick and Disabled Persons Act 1970 requires services to be provided to disabled children and adults where this is necessary to meet the person’s needs. It will obviously necessary for a service like a short break to be provided where otherwise the person’s family may fall apart – indeed the threshold for ‘necessary’ is set much lower, when all the equality and human rights considerations (see below) are properly taken into account. Short breaks can (and where necessary must) be provided under section 2(1)(a) at home (‘practical assistance in the home’) or section 2(1)(c) in the community (recreational facilities outside the home).
  2. The duties to disabled children. All disabled children are ‘in need’ for the purposes of section 17 of the Children Act 1989, and section 17(3) allows a service to be provided to any family member of a child in need, ‘if it is provided with a view to safeguarding or promoting the child’s welfare’. So there need be no argument about who the short break is for – the answer is that it is for every member of the family. A lawful short break provides a positive experience for the disabled child while allowing the family members to have some time off caring. There is also a duty to treat disabled children’s best interest as a ‘primary consideration’ in decisions made about them – this means their best interests should be considered first and can only be overriden if all other factors outweigh them. This duty stems from section 11 of the Children Act 1989 read with Article 3 of the UN Convention on the Rights of the Child and is brilliantly explained by Lady Hale in the leading case of ZH (Tanzania). It is obviously relevant both to the question of whether a disabled child gets a short break at all and to the nature and level of the short break service to be provided.
  3. Human rights obligations. Article 8 of the European Convention on Human Rights protects the right to respect for family life. As well as prohibiting negative ‘interferences’ by the state Article 8 ECHR can impose positive obligations to provide support to enable family life to continue – see Anufrijeva v Southwark at para 43. In McDonald v UK the European Court of Human Rights held that disputes about the level of care provided to a disabled person fell within the scope of Article 8 ECHR – see paras 46 to 47 (the court did not have to consider the question of positive obligations because in that case care was being taken away, see paras 48-49). The duties on the state under Article 8 ECHR are informed by the positive obligations under the other international human rights treaties, most importantly the UN Convention on the Rights of Persons with Disabilities (see Article 19(b) on community support) and the UN Convention on the Rights of the Child (see Article 23 re ‘special care’ for disabled children). There is growing acceptance by the English courts that these treaties create rights through Article 8 ECHR. In my view it is highly likely that a Local Authority which lets a family reach breaking point is acting in breach of the human rights of all the members of that family. We need to take more cases to prove this.
  4. The public sector equality duty. Under section 149 of the Equality Act 2010, public authorities must have regard to a series of specified needs, including the need to advance equality of opportunity to disabled people, when carrying out their functions. Families generally get to have a break from each other – so Local Authorities must give careful consideration to the need to give families with disabled child or adult members the same opportunities, both when planning and commissioning services and when making decisions in individual cases. The public sector equality duty may be particularly important in challenging decisions to cut funding for short break services.

The rights of carers to services will be strengthened when the Care Act 2015 comes into force next April – I’ll blog about this nearer the time. However I hope this shows that we don’t need to wait that long to establish an enforceable right for families to get the short breaks they need to survive and thrive.

On the question of thriving, not just surviving – there are very important regulations governing short breaks for disabled children which I don’t think get enough attention. The Breaks for Carers of Disabled Children Regulations 2011 are made under paragraph 6(1)(c) of Schedule 2 to the Children Act 1989 (stick with me, I promise it’s worth it). This paragraph of Schedule 2 imposes a duty on Local Authorities to provide services designed to assist family carers of disabled children ‘to continue to [provide care], or to do so more effectively, by giving them breaks from caring’. So we know from the duty in the Children Act 1989 itself that to comply with the law Local Authorities must not offer only ‘crisis’ breaks but also family support to allow ‘effective’ caring to continue.

The regulations then flesh out this duty in at least two important ways. Firstly, regulation 3(b) requires Local Authorities to have regard to the needs of family carers ‘who would be able to provide care for their disabled child more effectively if breaks from caring were given to them to allow them to (i) undertake education, training or any regular leisure activity, (ii) meet the needs of other children in the family more effectively, or (iii) carry out day to day tasks which they must perform in order to run their household’. So these are the goals to which Local Authorities should be directing their provision of short breaks, again both in terms of planning and commissioning and in making decisions on individual cases.

Secondly, regulation 4(1) states that ‘a local authority must provide, so far as is reasonably practicable, a range of services which is sufficient to assist carers to continue to provide care or to do so more effectively’. These services must include a range of daytime care, overnight care and leisure activities (regulation 4(2)). This is a ‘sufficiency duty’ which is a fashionable approach to social welfare law – Parliament imposes a duty on public bodies to secure what that body considers to be a sufficient supply of an important service, rather than dictating the precise level of service required.

How does all this help families? Firstly, it means that every Local Authority must have a range of short break services in its area – which must be set out in its short break services statement (regulation 5). Secondly, these services must not just be ‘crisis’ services but services designed to help families live (in short) ordinary lives. Thirdly, a range of different types of short break services must be available in every local area. Fourthly, and perhaps most importantly, the services available must be ‘sufficient’ (so far as reasonably practical). So every Local Authority has to make a rational and well-informed decision about what level of investment it is ‘sufficient’ for it to make in its short break services – and a failure to make such a decision, or an irrational decision which does not take the level of need properly into account, could be challenged by way of judicial review.

I hope the time will come when we will finally say enough is enough and ensure that every family member who cares for a disabled person is properly supported in their caring role. The law I summarise above is piecemeal and patchy, but it should already be sufficient to make sure this happens in every case. Where it doesn’t, I suggest families get legal advice. We cannot continue to let this be yet another area where legal rights and everyday reality are so far apart.

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