COVID-19: banana bread, blankets, beans and the law

I’m very pleased to host this guest post from Prof Katherine Runswick-Cole, describing her experience of using judicial review to challenge Derbyshire’s decision to operate under the Care Act ‘easements’. Katherine has also produced an easy read version of this post: Derbyshire easy read. 

Have you learned a new skill during lockdown? Perhaps you’ve made your first banana bread, crocheted a lockdown blanket or planted runner beans?

I’ve learned a new skill too, I’ve learned about the power of pre-action letters and judicial review to protect human rights.

Supported by Alex Rook of RIS Law and Steve Broach of 39 Essex Chambers, my son, William and I have used a pre-action letter to challenge Derbyshire County Council’s decision to introduce ‘easements’ under the Coronavirus Act (March, 2020) that would allow them to downgrade their duties under the Care Act (2014).  This decision had a potentially devastating impact on William.  William relies on direct payments to deliver the care he needs to live an ordinary life as part of his community. Derbyshire’s ‘easing’ of Care Act duties put this support at risk, and it appeared to us that William was facing the prospect of potentially reduced, or even no, support.

We wanted the Local Authority to explain the justification for their decision to introduce the easements – what was happening in Derbyshire that meant this decision was necessary?  After all, after a bit of brilliant investigative work by George Julian, we found out that the rate of deaths in Derbyshire from coronavirus during March and the first two weeks of April (30.8 per 100k people) was lower than the rate across England (36.6) and overall deaths from all causes in Derbyshire (153.2 per 100k people) was also lower than the rate across England (161).

Our family found out about the changes from Twitter, we had no communication, certainly no consultation, from the Local Authority. We challenged Derbyshire’s failure to consult with, let alone inform, people potentially affected by the decision to introduce easements and their failure to communicate this decision.

In their response to an exchange of legal letters, we discovered that Derbyshire triggered the easements on 30^th March, 2020 but did not communicate this decision, even, as they are required to, to the Secretary of State, until 22nd April, and then only published the decision in a cabinet report on 23^rd April, squirrelled away on their website.

Derbyshire have said that the council “has learned lessons from having to react swiftly to a situation never encountered before and will certainly respond differently in the future, should the need arise, in a number of respects, but certainly in relation to publicity and communication.”

In a public statement we stated that we remain concerned about the failure to communicate to anyone at all for three weeks about the decision, and even then only to do so by the publication of a Cabinet report on the website.  We also continue to question whether the legal tests for enacting the care act easements were ever met, but we were glad to see that Derbyshire has learned lessons, that they assured us that William will not in fact be directly affected, and promised to do things differently, and so, for the moment, we’ve decided not to pursue the case further.

Layers and the law

By now you might be thinking, great, a good news story, a local authority is held to account, but hidden behind the narrative are layers of complexity that often make it difficult for families like mine to use the law.

Cost

The first barrier is, of course, money.  Legal aid does still exist to fund cases like my own, but it is extremely difficult to find a legal aid lawyer with the necessary experience and capacity to take on new work.  Lawyers (sorry Alex and Steve) are otherwise notoriously expensive.  We could not have even begun on this path without them agreeing to speak to us about the issue on a pro bono basis.  We were also extremely lucky that RIS Law have an Education, Health and Care Social Justice Fund.  The fund exists to give legal advice for disabled people or families who need assistance to get the legal support that they require that they are otherwise unable to access. Our bursary covered the cost of sending the letters.

Who challenges?

During the pandemic, there have been several examples of individual disabled people and their families using the law to protect their rights (Doug Paulley sought to challenge the failure of the Secretary of State to plan for the allocation of critical care resources; Rachael Adam Smith has been fighting for carers pay during lockdown).  And yet the ‘big’ disability charities have been very quiet, noting, for example, that they are ‘troubled’ by the government’s delay in publishing information about the COVID-related deaths of people with learning disabilities, but not taking an active lead in any legal challenges.  While big charities may reasonably fear having to pay prohibitive legal costs, families are struggling to find the money even to send a pre-action letter, and, all the while, charities sit on their funds.  Our story shows the power of a small bursary fund, it would be good if more of these were made available, perhaps by big charities.

Legalese

I really struggle with the language of the legal system.  Now, as the saying goes, people in glasshouses shouldn’t throw stones, and as I work in a university I admit that I often use jargon myself, but it is very different jargon from the language of the law.  Points of law are difficult to navigate.  We needed Alex and Steve to translate it for us.

Access to ‘specialist’ knowledge has never been more important than it is now.  And I am really grateful to all the people who work so hard to give information in accessible ways (check out Sunderland People First; SpeakUp Self-Advocacy, Barod and Disability Sheffield for good examples of accessible information).

Interdependence

And all this has made me think very much about interdependence.  William and our family have been supported by our legal team, but also by our friends in the wider disability community.  We needed their support to get this far.

We have put our heads above the parapet, but we could not have done it alone. When deciding whether or not to challenge Derbyshire’s decision, I asked Alex and Steve if there was any potential risk that William might be treated ‘less favourably’, by the local authority, in the future.  To some this will sound like paranoia, and yet to others who have navigated systems of power, it is an obvious question. Support from the disability rights community gave us the help, support and confidence we needed to make this challenge, we all need support to speak up.

Finally

The inequalities that disabled people are facing during the pandemic are not new. Before COVID-19, people with learning disabilities and/or autism were already among the most disadvantaged members of society with a life expectancy 20-30 years less than their non-disabled peers.  When the Care Quality Commission finally published information about COVID-related deaths of people with learning disabilities, they revealed that the number of deaths has more than doubled.  And the crisis is by no means over yet.

Sadly, as lockdown eases, there will be more legal questions and potential challenges ahead. Disabled people, their families and allies will continue need access to the law to protect their rights. We will all need to play our part.

All the key ‘sufficiency’ duties for disabled children and young people

When looking a public bodies’ proposals to cut funding, one of the key legal questions which arises is whether there is a ‘sufficiency’ duty in the relevant area. I thought it might be helpful if I set out all the key sufficiency duties for disabled children and young people in one place, so here goes:

1. Education and care provision for disabled children and young people – section 27 of the Children and Families Act 2004 states that as well as keeping education and care provision under review, local authorities must ‘consider the extent to which the provision…is sufficient to meet the educational needs, training needs and social care needs of the children and young people concerned’. In considering this local authorities have to consult with (amongst others) children, young people and parents. Section 27 is therefore likely to be important in any case involving cuts to education or care services for children and young people.
2. Adult social care services – section 5 of the Care Act 2014 is often described as the ‘market shaping’ duty on local authorities. However as well as generally promoting an effective market in services, every local authority must ‘also have regard to the need to ensure that sufficient services are available for meeting the needs for care and support of adults in its area and the needs for support of carers in its area.’
3. Short breaks – regulation 4 of the Breaks for Carers of Disabled Children Regulations 2011 requires local authorities to 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.’ This is a key duty in relation to the provision of short breaks.
4. Childcare – section 6 of the Childcare Act 2006 mandates that local authorities must provide ‘secure, so far as is reasonably practicable, that the provision of childcare (whether or not by them) is sufficient to meet the requirements of parents in their area who require childcare in order to enable them to [work or study]’. This requirement extends up to 18 in relation to childcare for disabled children.
5. Children’s Centres – section 5A of the Childcare Act 2006 states that childcare arrangements must ‘must, so far as is reasonably practicable, include arrangements for sufficient provision of children’s centres to meet local need.’ These have to be physical centres, as per the definition in sub-section 4. This is why it would be very unlikely to be lawful for a local authority to decide to close all its children’s centres.

It is obvious that all of these duties are subject to important qualifications. The first two duties listed above are ‘regard’ duties, which require local authorities to ‘think about’ the need for sufficiency rather than actually achieve sufficiency. The final three duties are focused more on outcomes, but are qualified by reference to reasonable practicability. This means that local authorities can take account of their own resources when deciding what level of provision to make. However in my view it is clear that when contemplating cuts in these areas local authorities must understand the level of demand for a particular service and assess the extent to which the remaining service will be sufficient to meet local needs if the cut is to be made lawfully. Very often in my experience this fundamental requirement of lawful decision making is not met. Those who have concerns about cuts in their area which may breach one or more of these sufficiency duties will need to get advice ASAP.

No doubt there are other important sufficiency duties for disabled children and young people than those listed above – suggestions for other duties to include in this post are welcome using the comments below.

Mendip House – not ‘safeguarding’ failures but rights violations

This week I have been mostly cheering on families challenging the closure of an NHS short break unit in Hertfordshire, watching with a combination of awe and anger as George Julian live tweeted Richard Handley’s inquest* and feeling sickened and disgusted by the reports of the Safeguarding Adults Review of Mendip House, the former National Autistic Society (NAS) service in Somerset. Not the happiest week. This blog post is about the last of these three horror shows. The NAS position statement is here.

I’ve read lots of the commentary this week at the #MendipHouse hashtag on twitter. The most powerful comment for me was that by Neil Crowther: ‘When Panorama exposed Winterbourne View a human rights expert described the treatment filmed as ‘torture’. The treatment described here in a residential home run by [NAS] is also torture, inhuman and degrading treatment and must be labelled as such.’ Only judges and treaty bodies get to decide that human rights have been breached, but like Neil I struggle to see how the kind of treatment of the residents at Mendip House described in the Safeguarding Adults Review** can be anything other than inhuman and degrading – and thereby prohibited by Article 3 of the European Convention on Human Rights. I also share the concern Neil expressed in a later tweet about the radio silence from the ‘mainstream’ human rights bodies on this issue – feeding the unfortunate impression that violations of disabled people’s rights are not ‘real’ human rights violations.

The only positive contribution I may have to the discussion is to flag section 73 of the Care Act 2014, which makes clear that voluntary and private sector providers of state-funded adult social care are now covered by the Human Rights Act 1998. This means that a resident of a private or voluntary sector care home (or a recipient of domiciliary care) can bring a claim that their human rights are being or have been violated in exactly the same way as if they were in a state-run institution (see below for more on ‘institutions’ in this context). Although the Care Act only applies to adult social care, in my view it is very likely that the courts would now take the same approach in relation to children’s social care and NHS-funded care for both children and adults, in order to avoid unlawful discrimination contrary to Article 14 ECHR. However until this is tested in court the position is unclear. Equally, until the first voluntary or private sector provider is successfully sued using section 73 of the Care Act, I’d imagine this very important extension of disabled people’s rights will continue to be little known and poorly understood.

A number of really important questions seem to me to arise from what happened at Mendip House. The first is whether charities should be running services at all. In my view the only justification for a national charity running services that can only benefit a handful of individuals is that these services act as an exemplar of what can be provided to all. As such my view is that every service run by a charity should have an ‘outstanding’ rating. Charities should sell off services rated only ‘good’ or below to the private sector or non-profit companies; if the service isn’t ‘outstanding’ it can’t be an exemplar. Of course what was going on at Mendip House was about as far from ‘outstanding’ care as it’s possible to get, as the NAS recognised by closing the service.

Secondly, should charities be running these kinds of services? Dr Oliver Lewis of Doughty Street Chambers and Leeds University published a powerful thread on twitter suggesting that ‘institutional’ care breaches Article 19 of the UN Convention on the Rights of Persons with Disabilities on independent living and community inclusion. Oliver linked to the UN Committee’s General Comment on Article 19 from last year, which stated that assessments that disabled people were ‘unable’ to live outside institutional settings were ‘contrary to article 19’ and that independent living means ‘life settings outside institutions of all kinds’. While I would completely sign up to the programme of deinstitutionalisation called for by the UN Committee in its recent concluding observations on the UK, I’m not convinced that this means that there can be no charity-run residential care. Residential care provision can be (although admittedly rarely is) run wholly in keeping with the letter and spirit of Article 19, promoting genuine community inclusion. Equally I agree with Mark Neary that some of what passes for ‘independent living’ in this country is as alienating and segregating as the worst of residential care. What seems to me to be the greatest priority is ensuring that disabled people have ‘choices equal to others’ about where they live, in the language of Article 19. So (1) there ought to be a duty on local authorities to develop the widest possible range of community support services, and (2) local authorities and NHS bodies should be prevented from taking the cost of residential care into account when developing community support packages – precisely as we called for in #LBBill.

Thirdly, what’s the point of the big disability charities? On this one I am in complete agreement with Polly Neate, the chief executive of Shelter, who tweeted the following: ‘I think if local and activist-led groups and larger charities with more capacity join forces around an issue, there’s more potential to achieve change than traditional Westminster/Whitehall public affairs and so-called “insider” influencing’. But the prerequisite for this must be that the big charities have ‘clean hands’ – the least of it being that if things go badly wrong there is a prompt, complete and up-front public apology.

I’ll end on by returning to an earlier theme – that abuse such as that uncovered at Mendip House needs to be part of the mainstream human rights discourse. There are brilliant disabled activists, family members, academics and lawyers speaking more and more publicly about disabled people’s human rights. They need the full support of the major human rights organisations to make sure abuse like this is not framed as merely a ‘safeguarding’ failure but as human rights violations.

*Help fund George’s work here: https://chuffed.org/project/richard-handleys-inquest

**See in particular table 1 on pp5-6 of the report which goes through blow by blow the allegations in relation to individual residents.

Time to fight the removal of children’s rights through the Children and Social Work Bill

There are bad ideas. There are really bad ideas. And then there’s clauses 29-33 of the Children and Social Work Bill 2016.

This handful of clauses, if approved by Parliament, will allow the Secretary of State to exempt local authorities in England from the requirements of children’s social care legislation in the guise of ‘test[ing] different ways of working’. At a stroke the Secretary of State could say that Durham doesn’t have to meet disabled children’s needs under section 2 of the Chronically Sick and Disabled Persons Act 1970, Doncaster can forget about parent carers’ needs assessments or Dudley can ignore the duties owed to young carers. In the alternative, the Secretary of State could modify the way in which these requirements apply rather than exempt them entirely, just to increase the overall level of confusion.

I’m struggling to know where to start in explaining why this would be a bad idea. But here goes…This post is written from the perspective of the impact on disabled children, but similar concerns will apply across all children ‘in need’. For example, the clauses would seem to allow the Secretary of State to disapply every single requirement of the care planning regulations for looked-after children.

The law on support for disabled children, young people and families is already a mess. It derives from a patchwork of legislation enacted over the past decades, with duties and powers piled one on top of the other. The only saving grace is that it is the same mess everywhere – wherever a disabled child lives in England, their legal entitlements are the same.

If these clauses go through, even that saving grace will be lost. Rights and entitlements will vary across the country, depending on which exemptions or modifications the Secretary of State has granted to a particular local authority. This reduces rather than increases the transparency that is so badly needed if families are to enforce their rights.

What’s more, I simply do not understand why a local authority would need to be exempt from any of the baseline statutory duties governing support for disabled children in order to innovate or test different ways of working. The legislation governing children’s welfare creates a safety net which should never be removed or undermined in this way. Any specific amendments to the statutory scheme should require express and explicit Parliamentary approval, not the Secretary of State’s say-so.

All of the above is true at any time. However the statutory safety net is even more important at a time like this, when many local authorities feel constrained to cut services to the bone to balance their budgets.

The Bill comes back to the House of Lords for Report stage on 18 October – details of the Bill’s progress are on the excellent Parliament website. A coalition of individuals and organisations has come together to oppose these clauses under the banner of Together for Children. Please sign up to show your support – and please see this excellent article from Sara Ogilvie from Liberty for some of the wider concerns.

Hopefully the Lords will ensure that clauses 29-33 are removed from the Bill. However if they do not and they reach the statute book, it seems to me that there is a real issue here under Article 14 of the European Convention on Human Rights, given that disabled adults will continue to have the benefit of coherent legislation in the form of the Care Act 2014 whereas the patchwork of disabled children’s law will simply acquire more holes. It is very hard to see how this differential treatment can be justified, given that the needs of a 17 year old disabled child will be very similar to those of that young adult at 19.

Final point – all this shows how urgently we need the Law Commission to review children’s social care law…

Law Commission consults on review of children’s social care law – please respond

The Law Commission is consulting until 31 October 2016 on its next programme of law reform. One of the issues it is considering reviewing is children’s social care.

There will be competition for what goes into the Commission’s next programme. If, like me, you think children’s social care law is badly in need of an overhaul then please respond to the consultation before the end of next month – see the end of the final link above. One option would be to respond to say – ‘yes please, the current law is a mess’. However I’m sure the Commission would be assisted by slightly fuller responses. Here are some outline thoughts on the issues raised by the Commission in its consultation.

Firstly, the Commission must be right that many of the factors which required new legislation on care for adults in the Care Act 2014 also apply equally to children’s social care. As previously for adults, the law in relation to children’s social care is piecemeal and patchy. Although it centres around Part 3 of the Children Act 1989, the 1989 Act has been repeatedly and confusingly amended in the intervening years and there are other important statutes, not least the Chronically Sick and Disabled Persons Act (CSDPA) 1970 for disabled children. There must be a compelling case for a simpler, more streamlined scheme for children as for adults.

Secondly, it is noteworthy that the first two specific issues identified by the Commission concern disabled children. This reflects in my view the fact that the current statutory scheme works particularly badly for disabled children. It is very difficult if not impossible for families and professionals to understand the links between the CSDPA 1970, the Children Act 1989 and the Children and Families Act 2014. The way social care law operates (or fails to operate) for disabled children therefore seems to me to be particularly ripe for review.

I will post my full response to the Commission nearer the time, but I hope the above is helpful as a starter for 10. Please do respond to the consultation and spread the word to others who may be interested. The Commission has an excellent track record of getting its proposals into law and so this is likely to be a worthwhile investment of time.

 

A new right to short breaks – but only in Scotland

I’m heading back from the fantastic International Short Breaks Association conference in Edinburgh, where I spoke about Aiming High for Disabled Children and the short breaks duty in England. This gave me a chance to look at the (relatively) new Carers (Scotland) Act 2016, which will apply from 2017-18. Although some aspects of the Scottish legislation are familiar from the English scheme (for example the requirement to publish a short breaks services statement), there are of course important differences.

The most striking difference to my mind is that in Scotland there will shortly be an enforceable right to services (potentially including short breaks) for some unpaid carers of disabled children, not just disabled adults as under the Care Act 2014 in England. This is because the Scottish Act applies to ‘carers’, who are defined simply in section 1 as ‘an individual who provides or intends to provide care for another individual ‘. There are then two exceptions, the first being ‘professional’ carers. The second exception is that the definition does not apply ‘in the case of a cared-for person under 18 years old, to the extent that the care is or would be provided by virtue of the person’s age’. It seems to me that applying this exception is likely to create practical difficulties – is the parent or other relative support a disabled child by reason of her disability, her age or both? Regulations should shed light on how this test is expected to work in practice.

Although the test may be problematic, the principle of extending a meaningful right to support to unpaid carers of disabled children in Scotland must be welcome. The high point of the English legislation in this respect is the duty under section 17ZD-ZF of the Children Act 1989 to carry out a ‘parent carer’s needs assessment’ (‘PCNA’), but as blogged previously these sections do not create any right to support.  The English short breaks duty and accompanying regulations are focussed on the commissioning of short breaks by local authorities and do not confer any individual rights.

The right to support (including short breaks) in the Scottish Act stems from section 24, which states that subject to certain criteria local authorities ‘must provide support to the carer to meet the carer’s eligible needs’. Eligibility is to be determined by reference to local eligibility criteria, although the Act contains a power for Ministers to make national criteria through regulations which would override local criteria. I can imagine some interesting discussions about whether that power ought to be used.

Section 25(1) of the Scottish Act states ‘A local authority, in determining which support to provide to a carer under section 24(4), must consider in particular whether the support should take the form of or include a break from caring’. As such there must be specific consideration of whether short breaks need to be provided in every package of support for carers with eligible needs. It may well be in many cases that the carer’s eligible needs can only reasonably be met through the provision of some sort of short break.

Much of the detail of the scheme under the new Scottish Act has been left to regulations, which are still forthcoming. I very much hope colleagues in Scotland are able to push for the most rigorous scheme that will provide an example in England and elsewhere.

One final reflection – the Care Act 2014 in England applies to disabled adults and their carers. The Scottish Act applies to carers of both disabled children and adults – but not to disabled people themselves. Is it naïve to think that we might be able to have a single joined up scheme covering disabled people of all ages and those who provide them with care? This seems particularly important when a short break must be a positive and rights-respecting service for the disabled person, not just a chance for a break for their carer.

There is a lot more in the Scottish Act than I have covered in these initial reflections. I should also stress that I am an English lawyer and am not familiar with the wider scheme in Scotland in which this Act sits. Any comments by those with more expertise will be very welcome.

Using the law to recover the cost of care which the state fails to provide

A recent case has shed some light on one of the most difficult problems that some disabled people and families may face – how to recover the cost of care which should have been provided by the state.

A typical scenario might go like this. An assessment shows that a disabled child or adult has eligible needs. There may even be a care plan put in place or other agreement on the services or funding required to meet those needs. Then nothing happens – and so the disabled person or their family is left paying for care which the state has accepted it ought to provide.

There are a number of options in this situation. For example, a complaint can be made through the local authority complaints process and ultimately to the local government or health Ombudsman, which could recommend compensation for maladministration. These recommendations are almost always followed by public bodies. Alternatively, if the local authority is asked to refund the monies and refuses, that decision could be challenged by way of judicial review on the usual public law grounds, including rationality and reasonableness. This is particularly likely to be appropriate where there are other ‘live’ issues with the care package. The sums involved would need to be significant to justify a stand-alone judicial review to recover past care costs.*

A recent case however shines a spotlight on a third option – an ordinary civil claim for ‘restitution’. The case in question is Richards v Worcestershire CC and South Worcestershire CCG and the judgment at [2016] EWHC 1954 (Ch) concerned the defendants’ application to ‘strike out’ the claim.

The value of the claim was significant, amounting to over £644,000. This reflected the costs of care for Mr Richards after his discharge from hospital in 2004. Mr Richards had been detained under the Mental Health Act 1983 and so was entitled to ‘after care’ support under section 117 of the 1983 Act. Importantly, the judgment records (at [18]) that Mr Richards was ‘not challenging the defendants’ assessment of his needs and or their decisions as to what after-care services should be provided. His case…is rather that the defendants failed to provide the services that they considered should be supplied’.

The Judge did not have to concern himself with the factual issues in Mr Richard’s case, because the defendants’ application was to strike the claim out on the basis that it was ‘not properly the subject of private law proceedings’ (at [20]). The first issue the Judge had to resolve was whether it was possible in principle for Mr Richards to bring a restitutionary claim. He decided this in Mr Richards favour, firstly on the basis that the 1983 Act did not exclude any such claim at common law. It would seem that the same analysis would apply to any of the other statutes which give rise to an entitlement to community care services, for example Care Act 2014.

The Judge also considered that Mr Richards may be able to make out a claim for unjust enrichment. The Judge recorded that ‘failure to perform a public law duty has never of itself been held to be an unjust factor for the purposes of a claim in unjust enrichment or a sufficient basis for any other restitutionary claim’ (see [36]). However it was seriously arguable that the defendants had been enriched at Mr Richards’ expense and no argument was put forward that Mr Richard’s case that the monies had been paid by ‘mistake’ could not succeed.

The second issue was whether Mr Richards was entitled to pursue an ordinary civil claim (under Part 7 of the Civil Procedure Rules) or if he needed to bring his claim by judicial review. In short, the Judge held that Mr Richards was entitled to bring a civil claim for the reasons set out at [50] in the judgment. This is potentially helpful in future cases as there is a much less strict time limit for ordinary civil claims than for judicial review.

The defendants’ application was dismissed and Mr Richards’ claim will now proceed to trial unless it now settles, which my uninformed guess says is likely.

In terms of the factors which would seem to be needed to mount a successful claim of this type, the first requirement would be a clear breach of statutory duty to provide support by the public body. It would seem unlikely that another breach of statutory duty, for example a failure to complete an assessment, would be sufficient, even if this led indirectly to expenditure on care. The claimant would then need to show the presence of an ‘unjust factor’ such as a mistake – or convince the court that the common law should be extended so that failure to perform a public law duty alone would be sufficient.

None of this is likely to be straightforward and disabled people and families will of course need specialist advice on the facts of their individual case. It may however be helpful to consider a civil claim as part of the set of legal options where a local authority or NHS body is simply refusing to cover the costs occasioned by a breach of one of their duties.

Thoughts on the above and / or examples (anonymised as appropriate) of how costs of care have been recovered in other cases are most welcome via the comments below.

*Moreover it is not possible to bring a claim for restitution alone via judicial review (see Civil Procedure Rules r 54.3(2)).

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.

Challenging local cuts – some key legal questions

Following the political choices set out in the recent Spending Review, it would seem inevitable that local authorities are going to need to make cuts to important services next year, including those provided to children and disabled people. Recent Kings Fund analysis shows that the 2% precept on council tax is a totally inadequate solution to the funding crisis for adult social care. No-one seems to be talking about what the Spending Review means for children’s social care, which wasn’t even mentioned on the Department for Education press release – but it is unlikely to be good news.

The issue now is not whether there should be cuts, but whether the cuts which have to be made are lawful, both in terms of their effect on services and those who use them and the process by which the decisions were made. As Mr Justice Blake said in R (Rahman) v Birmingham City Council (para 46) in relation to the ‘public sector equality duty’ (PSED) found in section 149 of the Equality Act 2010:

Even where the context of decision making is financial resources in a tight budget, that does not excuse compliance with the PSEDs and indeed there is much to be said for the proposition that even in the straightened times the need for clear, well-informed decision making when assessing the impacts on less advantaged members of society is as great, if not greater.

In rather an Alice in Wonderland way, Parliament has continued to impose new duties on local authorities at the same time as central government has taken their funding away to comply with them. However this means that councils need to take the hard decisions that will be made in their budgets for 2016-17 and beyond with a crystal clear understanding of their legal obligations. Although there may come a time where a local authority is unable to set a budget which allows it to meet all its legal duties, I doubt we are there yet.

Councils are currently working up and consulting on their budgets for 2016-17, so now is the time when residents and local groups may want to ask some of these legal questions:

Will the council be able to meet all its ‘specific’ statutory duties owed to individual residents? For example:

1. The duty to meet all ‘eligible’ needs for disabled adults and their carers under the Care Act 2014
2. The duty to meet ‘eligible’ needs for disabled children under section 2 of the Chronically Sick and Disabled Persons Act 1970
3. The duty to provide free suitable home to school travel arrangements for all ‘eligible’ disabled children under section 508B of the Education Act 1996
4. The duty to secure special education provision in education, health and care plans for disabled children and young people in section 42 of the Children and Families Act 2014
5. The duty to provide advocacy to disabled people and carers during the care and support assessment and planning process under section 67 of the Care Act 2014.

Will the council be able to meet its ‘sufficiency’ duties to have a sufficient level of particular services to meet local needs? For example:

1. Childcare, including childcare for disabled children up to the age of 18, under section 6 of the Childcare Act 2006
2. Short breaks for disabled children under regulation 4 of the Breaks for Carers of Disabled Children Regulations 2011
3. Education and care services for disabled children, under section 27(2) of the Children and Families Act 2014
4. Children’s centres, under section 5A of the Childcare Act 2006
5. Services for disabled adults and their carers, under the ‘market shaping’ duty in section 5 of the Care Act 2014

Has the council had ‘due regard’ to the needs specified in the PSED (see above) – for example the need to advance equality of opportunity for disabled people (children and adults)?

Will the proposed cuts give rise to unlawful discrimination between different groups, contrary either to the Equality Act 2010 or Article 14 of the European Convention on Human Rights?

Has the council had regard to the need to safeguard and promote the welfare of children under section 11 of the Children Act 2004?

Has the council treated children’s best interests as a primary consideration in its decision making, as required by Article 3 of the UN Convention on the Rights of the Child?*

Has there been ‘fair’ consultation on the proposals? In particular (quotes are from the leading consultation case of ex parte Coughlan:

1. Has consultation taken place at a ‘formative stage’, i.e. sufficiently early in the decision making to influence the outcome?
2. Have consultees been provided with ‘sufficient reasons for any proposal to permit of intelligent consideration and response’ – i.e. do residents know what cuts are being proposed and why?
3. Have consultees had ‘adequate time’ for consideration and response?
4. Once the consultation has finished, has ‘the product of consultation’ been ‘conscientiously taken into account’ in the final decision.

Several of these legal principles – for example consultation, non-discrimination and the PSED – apply equally to NHS bodies such as clinical commissioning groups who may also be contemplating cuts to valued services.

If residents and local groups are not getting answers to these questions, or are unhappy with the answers coming back, then the next step may be to consult a specialist solicitor who can advise on whether there may be a challenge via judicial review. It is essential that any challenge to financial decision making is brought extremely promptly – so advice should be obtained before any final decision is made if possible, or otherwise straight after the decision.

It is also important to bear in mind that not all councils are equal – particularly given the increased focus on councils raising revenue from their own areas. Residents and local groups may want to ask questions about what level of reserves their particular council holds – particularly ‘free’ or unallocated reserves. Although spending reserves is obviously only a short term solution, it may be possible to use reserves to mitigate some of the cuts and help with transition to alternative forms of provision.

It is unlikely that legal challenge alone is going to be sufficient where cuts are proposed – there also needs to be political pressure. There are a number of guides for local groups on how to campaign, including campaigning against cuts or to save services. I really like this one from the Every Disabled Child Matters campaign.

Local politics will still come down to local priorities, although the choices will get harder than ever. In the light of the duties above, the law requires councils to give significant priority to services for children and disabled people. It is hoped that the decision by Hampshire not to cut its short breaks budget for 2016-17 is therefore one that other local authorities will follow to the extent they can.

*We can save detailed arguments about whether and why the UN CRC has to be followed when it is not directly incorporated into English law for any case that goes to court.

Talk to Housing and Support Alliance Independent Living conference

Absolutely cracking conference put on by the Housing and Support Alliance today. Real unity in the room that we need to fight for the right to independent living in these challenging times.

My slot was given the title ‘Rights are more important now than ever’. This is roughly what I said:

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What’s the point of people with learning disabilities having legal rights? Some people (including I suspect some lawyers) don’t think that this area of law is ‘real law’. On this view, local authorities and NHS bodies should just be left to get on with providing whatever support they think they can afford, perhaps subject to inspections from official bodies to make sure things don’t get too bad.

But in the 21^st century as a society we don’t think that’s good enough. Instead most of us sign up to a view that everyone, including disabled people, has fundamental rights that have to be respected.

We have these rights because we are human – that’s why they are called human rights. So when councils put disabled people in places where they are not free to leave and they are subject to continuous supervision and control (watched all the time), this is a deprivation of their liberty, the same as it would be for everyone else. It needs to be properly justified and approved by law to stop there being a breach of Article 5 of the ECHR, the right to liberty.

But we also recognise in the 21^st century that if we just have one set of rights for everyone we won’t ensure that everyone’s rights are properly respected. So we reflect the fact that different groups have different needs and set out their rights – women, children and finally and most recently disabled people.

So Ian’s right* – we are part of the civil rights movement. And Gary’s right* – we need to save the Human Rights Act. I think it’s striking that two of the people fronting the Act for the Act campaign are Jan Sutton and Mark Neary. Jan is a disabled women who used the Human Rights Act to get a package of care which meant she could live with dignity. Mark, as I imagine everyone here knows, can speak to the power of the Human Rights Act in helping get his son Steven home. So the Human Rights Act is fundamental to realising disabled people’s human rights.

We now have the UN Convention on the Rights of Persons with Disabilities (the CRPD). This is our Bill of Rights. It is a full package of rights, which if respected in every case would mean true independent living and community inclusion for every disabled person. Although it is still not part of our law, in the same way that the European Convention on Human Rights is through the Human Rights Act, the courts are giving the CRPD ever greater weight – for example, in helping find unlawful discrimination against disabled children in hospital who lose their disability benefits after 84 days.

If people think about the CRPD, they generally think about Article 19 – described as the right to independent living. But Article 19 is actually headed ‘living independently and being included in the community’. And that’s what it’s about – real inclusion, meaning ordinary lives, and the kind of love and relationships Sara** was talking about.

And then we have the next set of rights, those given by Parliament in specific acts like the Care Act 2014. These rights can move around and change in the details, but the basics endure.

For example the right for disabled people to have their eligible social care needs met in full regardless of the cost carries on from the old scheme to the Care Act 2014. However – if there are two ways of genuinely meeting the person’s needs the state can meet needs in the most cost-effective way; we see straight away how disputes arise.

But the basics aren’t enough. So there’s a right to personal care – but what about as Sally and Laura*** say, when your personal care gets ‘done’ by someone you don’t know, who only has 15 minutes with you and doesn’t have the time to get to know you or show you respect. Is that rights-respecting care? Of course not – either under the Care Act or the Human Rights Act.

So rights are always ‘important’, in the sense that if the law requires something to be done it must be done. Law trumps everything – even (surprise surprise) local authority policies.

But why might it be thought that rights are more important now than ever? The answer is obvious; because disabled people are under sustained attack from government policies that cut the specific fund to support independent living, undermine entitlements to social security, reduce access to legal aid and make it virtually impossible for councils to comply with their statutory duties through reducing their budgets.

And if it’s hard for councils now, we know that after the next spending review later this month it will almost certainly get worse. The Local Government Association say that with the expected cuts there will be:

• Legal challenges because councils aren’t meeting their Care Act duties
• Less dignified care
• More unmet need

So rights matter because they are a way of fighting back. They give content to our shouts where people are living impoverished non-lives, as Sara said. If there is a legal duty to provide – for example – the personal care a disabled person needs to lead a dignified life, then the state can be made to provide it.

Tom**** seems to be saying we have to accept the cuts. I say no – we have to enforce the law. Isn’t it interesting that Tom says – rightly – that where you live is going to make a massive difference to the support you get. But yet the law of England is the law of England…

Should people keep paying for their support with their freedom – definitely not? Should the number of people getting state support be reducing, as Tom showed? Definitely not – there has been no legal change that would allow this. Indeed councils aren’t allowed any more to have only care for ‘critical’ needs. If anything eligibility criteria should be getting more generous rather than reducing.

We can’t fund fewer people or give them less support because the law doesn’t allow it. Indeed there is an open question as to whether Elaine McDonald’s case would be decided differently now the Care Act is in force. Would the Care Act well-being duty allow for the provision of incontinence pads in cases such as this.

With respect to Tom, it shouldn’t be a choice between libraries and social care. There are duties to have both. If the government wants to change that, they need to ask Parliament to change the law.

Until they do, surely soon we will see legal challenges by local authorities on the basis they haven’t been given enough money to comply with their legal duties? Indeed we already have – two councils took the government to court to get more funding to implement the Care Act, and it seemed the government backed down and provided the funding once the court granted permission for the claim to proceed.

The legal route to achieve this is judicial review – and the essential point I want to make in this short talk is that legal aid is still available to bring judicial review challenges. If commissioners are becoming a ‘hard to reach group’, sending them a pre-action letter before a judicial review often gets their attention.

So what should disabled people, families and allies do if their rights aren’t being respected? There are lots of options – contact their MP, start a petition, chain themselves to the council railings. I’m not discounting any of these – but I would say that one of the first things to do is get specialist legal advice. If you search ‘rightsinreality solicitors’ you will get a list of some of the solicitors with disability expertise who have legal aid contracts and can advise disabled people and family members. There are issues about financial eligibility – having too much money to get legal aid – but it is always worth checking this out with a specialist solicitor, don’t just use the online calculator.

I’ve never known someone with a legal problem take advice too early, because a good solicitor will always say if there are other things to do than go to court. But I’ve known plenty of people take advice too late, when much of the damage caused when rights aren’t respected has already been done.

It’s also vital to remember that for every case that goes to court there will be a hundred if not hundreds that get set sorted out well before, with a better package of support.

At the same time we need to improve and strengthen the legal framework. That is the point of the #LBBill which has been crowdsourced by the incredible Justice for LB campaign, with disabled people, family members and allies across the country. It would:

• make the right to independent living in Article 19 of the CRPD part of English law;
• stop there being caps on the cost of care;
• require the state to respect people’s wishes as to where they live;
• ensure that there is enough community support available; and
• sort out problems with the Mental Health Act and Mental Capacity Act.

Many of these ideas can be read in to the existing law – and we need to push back when people deny that these rights exist. It is vital, as Sally says, that we don’t pretend everything is ok.

But #LBBill would make everything clear and put the rights in one place. We will have another go at getting the Bill into Parliament when the ballot for private members’ bills happens next summer. We are also very encouraged that the Law Commission is considering some of our ideas in its new scheme for managing deprivations of liberty.

We are less encouraged by the Department’s recent response to the No right ignored consultation. Issuing guidance isn’t going to do the job.

I want to end on some striking research which was covered yesterday by the brilliant team at Community Care. It concerns the new right to advocacy under the Care Act 2014, which is absolutely essential if that Act is going to make any real difference to people’s lives. Yet we learn that advocacy referrals are ‘way below’ expected levels; Reading council expected to provide 4,000 hours of Care Act advocacy this year, yet six months in they’ve only provided 170 hours. And this is a council that says it is actively promoting the new right. So we have to keep pushing to make these rights real.

My final conclusion is this. It is unacceptable for Parliament to pass laws and the government to sign treaties creating new rights, and then for funding to be cut to make it impossible for local bodies to realise them. This is the challenge for the next few years – and I believe rising to that challenge means using the law to enforce the extensive rights disabled people now have. If we bring the cases to show the law isn’t being respected then the funding we need must follow – that’s what the rule of law requires.

If government wants to reduce support for disabled people they need to get Parliament to change the law and face the consequences at the next election. We can’t let them get away with doing it by stealth through ever increasing cuts to budgets.

*Ian Birrell and Gary Bourlet co-chaired the conference (brilliantly). Ian is a journalist and Gary is from People First England (and judging by the mood of the conference a future Labour leader)

** Dr Sara Ryan gave an earlier keynote talk challenging the term ‘independent living’ being applied to ‘state supported non-lives’

***Laura Broughton and Sally Warren from Paradigm gave an earlier talk challenging people not to pretend things are as good as they can be

**** Tom Noon, Chairman of Cordis Bright, spoke powerfully about the present realities in relation to both housing and support