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.

#RightfulLives – all the court judgments upholding the human rights of autistic and / or learning disabled people

Edited 25 September 2018 to add reference to two further cases – G v E and Cheshire West

The #RightfulLives online exhibition launched today (24 September 2018). It is an incredible collection of the voices and views of autistic and / or learning disabled people and their families, grouped under the key Articles from the European Convention on Human Rights (ECHR) (.pdf). The ECHR is of course incorporated (given force in domestic law) by the Human Rights Act 1998. The courts are also increasingly interpreting the EHCR rights by reference to the other key international conventions, including here the UN Convention on the Rights of Persons with Disabilities (CRPD).

I was struck by the following section of the intro to #RightfulLives – ‘The idea for the exhibition came about through a conversation about how the legal framework of the Human Rights Act seems to barely touch the lives of people with learning disabilities. Since then we have only been able to find three published successful court judgements where the HRA has been apply to learning disabled people’.

My immediate thought was – ‘that can’t be right’ – and it’s not, but it’s also not out by much. Below is the (very short) list of court judgments I have been able to locate (thanks Twitter law geek buddies) which meet the following criteria:

1. The case involves at least one autistic and / or learning disabled claimant. This means I had to leave out Bernard v Enfield, the only case where the domestic courts have found a breach of the positive obligation to provide welfare support under Article 8 ECHR, because Mrs B was a physically disabled person.
2. The claim was brought under at least one of the ECHR Articles. This significantly reduces the list, because very often the court is considering the rights of autistic and / or learning disabled people through the lens of other legislation, most notably the Mental Capacity Act 2005.
3. The claim was brought in the domestic courts since the HRA came into force (the year 2000). This rules out earlier claims such as the landmark ‘Bournewood’ case (HL v UK) which gave rise to the Deprivation of Liberty Safeguards (DoLS).
4. The claim didn’t settle. Very many claims made in relation to breaches of human rights will be settled by the public body prior to any hearing, perhaps with an apology and / or a payment of compensation. One example of such a claim which sticks in my mind was a case I was instructed on for a young person who had been separated from her family against her will, where a significant payment was made by the public body in settlement. Of course the consequence of this is that usually no-one else knows what went wrong…
5. The claim succeeded. This ruled out at least one notable case, being A v Essex, the Supreme Court decision on a claim under the right to education (Article 2 of the First Protocol to the ECHR) for an autistic child which failed on its facts, although left open the possibility of future claims where children are denied access to education which is available under the domestic system.

So this is the list of all the cases, to the best of my knowledge, which meet the above criteria – in date order. Most but not all involve unlawful deprivations of liberty and resulting breaches of Articles 5 and / or 8 ECHR. If I’ve missed any, and I hope I have, please let me know in the comments below – and please make sure you visit and promote the #RightfulLives exhibition to help make the human rights of autistic and / or learning disabled people a reality.

1. R (A, B, X and Y) v East Sussex CC (No 2) [2003] EWHC 167 (Admin) – this was a very early HRA case where Mr Justice Munby (before his elevation to the Court of Appeal) considered the legality of a local authority’s policy in relation to manual handling of two sisters, who were young women with profound physical and learning disabilities. Munby J memorably held (in the context of Article 8 ECHR) that ‘The recognition and protection of human dignity is one of the core values — in truth the core value — of our society and, indeed, of all the societies which are part of the European family of nations and which have embraced the principles of the Convention.’ The Judge referred further to ‘the enhanced degree of protection which may be called for when the human dignity at stake is that of someone who is, as A and B are in the present case, so disabled as to be critically dependent on the help of others for even the simplest and most basic tasks of day to day living.’ He further stated that ‘The other important concept embraced in the “physical and psychological integrity” protected by article 8 is the right of the disabled to participate in the life of the community and to have what has been described….as “access to essential economic and social activities and to an appropriate range of recreational and cultural activities”. This is matched by the positive obligation of the State to take appropriate measures designed to ensure to the greatest extent feasible that a disabled person is not “so circumscribed and so isolated as to be deprived of the possibility of developing his personality”.’ As such the Judge held that ‘A and B’s rights to participate in the life of the community and to have access to an appropriate range of recreational and cultural activities are so important that a significant amount of manual handling may be required. ‘ It is striking that so few later cases have developed the important concepts and obligations identified in A, B, X and Y.
2. G v E and A Local Authority [2010] EWHC 621 (Fam)– this case concerned a 19 year old with a rare and complex genetic condition resulting in a severe learning disability. As well as issues of capacity, residence and contact, the Court of Protection was asked to determine whether the local authority had unlawfully detained E in breach of Article 5 ECHR (right to liberty) and / or interfered with his rights under Article 8 ECHR (right to respect for family and private life) by removing him from the care of his former foster carer. Baker J held that ‘by removing E from F’s care, placing him at the V Unit and then moving him to Z Road without complying with the procedures laid down in the MCA, either the DOLS procedure in Schedule A1 or an application to the court under ss 16 and 48, the local authority infringed E’s rights under Article 5 ECHR.’ Furthermore ‘the removal from F’s care, the failure to give any or any adequate consideration to his family life with F at the time of the removal or for many months thereafter, the failure adequately to involve F in the decision-making process about E’s future, and the impediments to contact between E and F for several months after his removal constituted a serious breach of his Article 8 rights.’ In conclusion Baker J held that ‘The errors perpetrated by the local authority in this case are grave and serious.’
   
3. Hillingdon LBC v Neary [2011] EWHC 1377 (COP)  – the term ‘landmark case’ is horribly over-used, but Steven Neary’s case undoubtedly justifies it. As well as a wholesale failure to comply with the MCA in depriving Steven of his liberty, the Judge also found a number of breaches of Articles 5 and 8 ECHR. See para 32 of the full judgment, set out here, for the Court’s conclusions on the human rights issues:
   (1) By keeping Steven Neary away from his home between 5 January 2010 and 23 December 2010, Hillingdon unlawfully breached his right to respect for his family life, contrary to Article 8 ECHR.
   (2) By keeping Steven Neary at the support unit between 5 January 2010 and 14 April 2010, Hillingdon unlawfully deprived him of his liberty, contrary to Article 5(1) ECHR.(3) By keeping Steven Neary at the support unit between 15 April 2010 and 23 December 2010, and notwithstanding the urgent DOL authorisation granted by Hillingdon as managing authority and the three standard DOL authorisations granted by Hillingdon as supervisory body, Hillingdon unlawfully deprived him of his liberty, contrary to Article 5 (1) ECHR.
   (4) By failing to
   (i) refer the matter to the Court of Protection sooner than 28 October 2010, and/or
   (ii) appoint an Independent Mental Capacity Advocate for Steven sooner than 29 October 2010, and/or
   (iii) conduct an effective review of the DOL best interests assessments under Part 8 of Schedule A1 of the Mental Capacity Act 2005,
   Hillingdon deprived Steven Neary of his entitlement to take proceedings for a speedy decision by a court on the lawfulness of his detention, contrary to Article 5 (4) ECHR 
4. R (C) v A Local Authority and others [2011] EWHC 1539 (Admin) – the ‘Blue Room’ case, see also the full judgment. C was an 18 year old boy who was regularly secluded in a padded blue room at his school. The local authority denied any breach of C’s Article 3 (freedom from torture and inhuman or degrading treatment) and/or Article 8 ECHR rights, but conceded that ‘when he is secluded and restrained in the blue room …that amounts to a deprivation of his liberty and in so far as that is not authorised by the court, such a deprivation is unlawful and in breach of his article 5 ECHR rights.’ The Judge held that ‘Neither the local authority nor the organisation operating the school had any power to deprive C of his liberty.’ The Judge adjourned the Article 3 and 8 Article issues for further hearing alongside the claim for damages. I cannot find any published judgment on these issues, so it is likely that these aspects of the claim settled.
5. Commissioner of Police for the Metropolis v ZH[2013] EWCA Civ 69 – the only case where the Court of Appeal has considered the ECHR rights of an autistic or learning disabled person. The Court of Appeal upheld the decision of the trial judge that the Met Police had breached the Article 3, Article 5 and Article 8 rights of a 19 year old young man who had been detained and placed in the cage of a police van after becoming distressed at a swimming pool. In particular the trial judge was not wrong to find that the treatment meted out to ZH reached the minimum level of severity required to find a breach of Article 3, in terms of inhuman and degrading treatment. Lord Dyson MR found that ‘Although the police officers were acting in what they thought to be the best interests of ZH, on the judge’s findings they made serious errors which led them to treat this vulnerable young man in a way which caused him great distress and anguish…nothing could justify the manner in which they restrained ZH.’ 
6. Cheshire West and Chester v P [2014] UKSC 19 – undoubtedly the most celebrated of these cases, Cheshire West was a resounding affirmation by the Supreme Court that disabled people’s right to liberty is the same as any other person. The Supreme Court was in fact considering three cases involving learning disabled people, all of whom were held (by the majority) be deprived of their liberty in their living arrangements. Lady Hale held that it was ‘axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else. This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings, and is confirmed in the United Nations Convention on the Rights of Persons with Disabilities.’ As such, ‘what it means to be deprived of liberty must be the same for everyone, whether or not they have physical or mental disabilities. If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.’ The practical consequences of Cheshire West are that (1) many more disabled people are deprived of their liberty than was previously understood to be the case and (2) until Parliament changes the law, many of these deprivations of liberty will need to be authorised by the Court of Protection to avoid a breach of Article 5 ECHR (leading to a raft of follow on litigation as to how to make this work in practice).
7. Somerset v MK [2014] EWCOP B25 – Somerset clearly hadn’t paid attention to the guidance from Peter Jackson J in Steven Neary’s case, which HHJ Marston held ‘has many depressing similarities to this one’. The Judge held that his findings ‘illustrate a blatant disregard of the process of the MCA and a failure to respect the rights of both P and her family under the ECHR. In fact it seems to me that it is worse than that, because here the workers on the ground did not just disregard the process of the MCA they did not know what the process was and no one higher up the structure seems to have advised them correctly about it.’ Somerset conceded that MK had been subjected to an unlawful deprivation of liberty and that there had been an unlawful interference with the family’s Article 8 rights.
8. C and C v Governing Body of a School [2018] UKUT 269 (AAC) – the most recent case was a challenge to the application of the ‘tendency to physical abuse’ exclusion from the protection of the Equality Act 2010 to autistic children in school. The Upper Tribunal held that the relevant regulation resulted in unlawful discrimination contrary to Article 14 ECHR and so had to be disapplied for this group of children. The decision (which has not been appealed) means that head teachers will have to justify decisions to exclude children with autism, ADHD etc in order to avoid unlawful disability discrimination, even where these children have behaved violently or aggressively.

Seeking legal change in the courts – case study of a Supreme Court intervention

I had the privilege of being instructed by the Childhood Bereavement Network (CBN), part of the National Children’s Bureau, in a recent Supreme Court intervention with colleagues at Irwin Mitchell’s public law team. The case concerned the different treatment of cohabiting partners and their children in relation to bereavement benefits compared with married couples. In this guest post, CBN’s Director Alison Penny describes the process of intervening in a case before the UK’s highest court and offers tips for other NGOs considering intervening in cases with wider public importance.

The problem 

Here at the CBN, we get fairly regular incredulous phone calls or emails asking us if it’s true that unmarried, cohabiting parents can’t claim bereavement benefits if one of them dies. Usually, the call comes from someone ringing on behalf of a friend or family member who has recently faced the devastating loss of their partner. They have been told that the family won’t be eligible for bereavement benefits, and simply can’t believe in this day and age that this is true.

Astonishingly, it is. We know that each year, around 2,000 families face the double blow of one parent dying and the other discovering that they and the children won’t get bereavement benefits. On average, these families lose out by over £12,000 before their children reach adulthood. Parents make the same National Insurance contributions whether they are married or not. These build up their entitlement to a state pension or, if they die before they can draw it, to survivor benefits for their family. But these benefits are only paid if the survivor was married to or in a civil partnership with the person who died.

Some couples with children choose not to marry, or can’t marry, for a range of reasons, and are fully aware of the financial risks this brings. But alarmingly, more than half of couples living together have no idea: they believe that by cohabiting they have the same legal rights as if they were married. In fact, there is no such thing as common law marriage in the UK (unless the couple were living together ‘with habit and repute’ before 2006 in Scotland).

This lack of awareness stems in part from the inconsistent treatment of cohabiting couples. If the government insists on treating you and your live-in partner as a couple for tax credits and means-tested benefits, why would you expect to need a marriage certificate to receive bereavement benefits? For us at CBN, the problem is that as well as discriminating against the surviving partner on the grounds of their marital status, the policy also discriminates against the couple’s children.

CBN’s campaigning on the issue

Until very recently, we took a two-pronged approach to tackling this social injustice. We tried to raise public awareness of the lack of rights for cohabiting couples through our Plan If campaign, and at the same time coordinated a group of concerned organisations lobbying in Parliament to whoever would listen. We gave evidence to the Work and Pensions Select Committee, and on the strength of this the Committee recommended in March 2016 that eligibility be extended to cohabiting couples with children. But the Government held fast to its position that inheritable benefits derived from someone else’s National Insurance contributions have always rested on the marriage or civil partnership, and they were not minded to look at this again.

Cohabitation and the courts

Alongside this dual approach, we followed with interest the case of Siobhan McLaughlin. She and her partner John had four children together during their 23 year partnership. They never married, because prior to meeting Siobhan, John had promised his dying wife that he would not remarry. After John’s death, Siobhan learned that she was not eligible for Widowed Parents’ Allowance to help raise the children. She appealed this and won her challenge in the High Court in Belfast in December 2015, but this was subsequently overturned by the Court of Appeal. However, she was given leave to appeal to the Supreme Court.

We read the judgments from the High Court and Court of Appeal and felt that there was some contextual material missing which frustrated us. We knew that our parliamentary campaigning was likely to stall until the Court made its ruling, so we resigned ourselves to sitting on the sidelines.

Making an intervention

However, colleagues from the Child Poverty Action Group (CPAG) soon got in touch to ask if we would be seeking permission to intervene in the case. Not being familiar with the judicial process, we had to look up what this meant. Realising that this could give us an opportunity to share in court the evidence we’d been gathering for parliamentarians and the media, we were keen to consider it. We contacted the Registry at the Supreme Court who were extremely helpful in explaining the process, but realised we needed more support. We got in touch with Steve Broach, a former colleague with the National Children’s Bureau and Council for Disabled Children, now a human rights barrister at Monckton Chambers. At that stage, we just needed someone who’d be able to answer our very uninformed questions about the process.

Steve read the case papers through, and we talked through what evidence we had or could collect that might be helpful to the court. He offered to represent us pro bono and kindly introduced us to solicitor Alex Rook at Irwin Mitchell, who agreed to work with us on the same terms. Without these most generous gifts of time, there is no way that a tiny organisation such as ours would have been able to get involved. We have just 1.4 full time equivalent members of staff, and we have to marshall these resources very carefully.

Steve and Alex talked us through the process, and spoke to our counterparts at CPAG to make sure that our interventions would complement rather than repeat one another. They helped us seek consent from Siobhan’s and the government’s solicitors to ask for permission to make written interventions and, crucially, an undertaking that they would not seek costs against us. Without this clear undertaking, we had to weigh up the financial risks of intervening. After very careful consideration of the risks set out by Steve and Alex, we decided to go ahead.

Preparing the submissions

What followed was a twin track process of gathering the evidence we wanted to submit, and making sure it was in the format that the Supreme Court required. There were almost as many emails about font size as there were about legal arguments! Meeting the strict deadline to make our submissions involved some very late nights.

Two widowed parents had contacted us during our earlier campaigning work to describe how bereavement benefits for children were structured elsewhere in Europe. This was a crucial part of our evidence, and we put a call out to NCB colleagues to enlist foreign-language-speaking friends and family to translate obscure social security documentation for us.

Alex and his colleague Rosie did a superb job of juggling multiple copies of documents, suffixed with ever-increasing version numbers. It was a huge relief when the bundle was submitted, and there were no further tweaks we could make.

Approaching the hearing

 There were however many more questions to pose to Steve and Alex, who were endlessly responsive and good-humoured. We needed to know more about the process, including whether we could attend in person and when the judgement was likely to come out. We had many queries about the media work we could and should do in the run-up to the hearing, and consulted on the wording of tweets and press releases.

Thanks to Siobhan and her solicitor Laura Banks’ willingness to talk to the media, the case was covered extensively in the run up to the hearing on 30 April. The Supreme Court heard the case during its first ever sitting in Belfast, and there was a palpable sense of excitement in the court buildings at hosting the sitting. We even managed a little live-tweeting.

It was pleasing to hear our evidence being mentioned by the other parties in the case during their oral submissions – those late nights felt worth it. But more broadly it felt good to be present for the culmination of many years’ work from campaigning organisations and from Siobhan and her legal team. She and her children attended the hearing and provided an excellent demonstration of the legislature in action.

Ideally, the government would have changed its position years ago, and there would have been no need for Siobhan to put herself and her family through the effort and scrutiny of taking the case to court. Whatever the outcome, she has done a brave thing in drawing the court’s attention to this issue, and raising awareness among the general public along the way. We are proud to have been part of this. Now we are more familiar with the process, we would feel more confident about intervening again in cases that relate to discrimination against grieving children and those caring for them. It’s a new string to our campaigning bow.

Advice to potential interveners

•  Talk to any other actual or potential interveners in the case to make sure that your evidence won’t be repetitive.
• Weigh up the risks and benefits of intervening carefully. Involve all those who are necessary to the decision at an early stage – but remember that you can always withdraw right up to the point you send in your submissions.
• Some of the evidence you would usually include in a briefing paper or campaign document might not be relevant or admissible to the court. Listen to your lawyers about what you should include.
• Be well organised. It will be much easier for your legal team to advise you and keep track of document versions if you set out your queries and amendments clearly.
• If you don’t already know any solicitors or barristers who may be willing and able to advise and act for you in an intervention, you can try contacting Law Works, a charity which connect volunteer lawyers with people in need of legal advice, who are not eligible for legal aid and cannot afford to pay and with the not-for-profit organisations that support them. You can also ask other NGOs in your sector if they know of lawyers with the right expertise who may be interested in your potential intervention.
• You might find it helpful to attend a training course on the use of judicial review, such as that offered by the Child Poverty Action Group

It’s not funny, to cut SEND money

I have shamelessly stolen the title for this blog post from Milo, a young man involved in the successful campaigning on SEN cuts in Hackney. Milo chose a donation from me to the fund to help save the Kids playground in Hackney as the price of this theft. Milo explained why as follows: ‘I am choosing the Kids adventure playground because I like it and it’s really cool to play in because disabled children can play there with their brothers and sisters.’ Please support the playground if you can.

So local authorities across England have now set their budgets for 2018-19 or will do so in the coming weeks. Some have taken every possible step to protect the services that matter to disabled children, young people and their families. Others, not so much. This blog post highlights some points of interest for all concerned with saving these vital services and challenging cuts.

First, I’m taking part in a webinar with Contact and Alex Rook from  Irwin Mitchell solicitors on ‘Using the law to challenge cuts’. The webinar is now fully subscribed but will be available to view through Contact online after the event – details tbc. If you can’t attend the webinar but have questions for us please either leave comments here or tweet me (@stevebroach). There is also very helpful advance reading in a guest blog from Alex’s colleague Mathieu Culverhouse dealing with the practicalities of using the law to challenge cuts.

Alex was the solicitor for the amazing families in #NascotLawnJR. In the unlikely event that there is anyone reading this blog who doesn’t already know, this case involved a number of families whose children have complex health needs who came together and fought the decision by their Clinical Commissioning Group (the local NHS) to pull funding for an overnight short break centre. The CCG’s funding decision has now been held unlawful and quashed by the court not once, but twice.

The outcome of Nascot Lawn is powerful evidence that judicial review can achieve real benefits for disabled children, young people and families – ensuring cuts cannot be made unless and until a lawful process has been adopted. It is important to emphasise that even ‘process’ challenges – for example concerning a failure to consult lawfully or to discharge the ‘public sector equality duty’ – can have real and lasting benefits. Where a cut is quashed because it was adopted following an unlawful process it routinely happens that the public body do not remake the decision but instead find the necessary savings another way. This is supported by excellent research from the Public Law Project which found that ‘Claimants for JR gained a wide range of tangible benefits: the most common of which were conferment or retention of a service by a public body…’.

However in relation to the coming round of cuts it may well be possible to go beyond the typical ‘process’ challenges in judicial review. In fact Nascot Lawn itself was more than a ‘process’ challenge – the CCG’s funding decision was held to be unlawful in substance as the CCG had failed to appreciate that Nascot Lawn was a ‘health service’ under the NHS Act. As this blog post explains, services for disabled children, young people and families are supported by a range of ‘specific’, ‘sufficiency; and ‘due regard’ duties. It may well be that some of the proposed cuts are unlawful in substance because they will result in the local authority (or CCG) breaching one or more of these duties. This will not then just be a question of the decision being quashed and the local authority or CCG being required to think again – if any of these kinds of challenges succeed then the cut would not be able to be made at , or at least not in the form held to be unlawful by the court.

Of course local challenges will only be able to do so much in the current context. Local authorities cannot magic up sufficient money to replace the central government funds they have lost. This is why campaigning efforts towards central government such as this petition by the Disabled Children’s Partnership are so important. It is only through work like this that we can move away from making sure that cuts are lawful to a focus on the kind of investment and expansion in services and support that families really need to see.

A final point – I wanted to emphasise that cuts are a human rights issue. The ‘socio-economic’ rights under the UN Conventions on children’s rights and disabled people’s rights all require ‘progressive realisation’ – as the Disability Convention states (Article 4(2)), the government has undertaken to ‘take measures to the maximum of its available resources…with a view to achieving progressively the full realization of these rights’. In simple terms that there should be ongoing progress towards achieving the rights to education, health, independent living and so on for disabled children and young people. This is why the UN Committee, in its General Comment on the right to education, states that ‘any deliberately retrogressive measures’ on education funding ‘must not disproportionately target learners with disabilities at any level of education’. In my view the same must hold true for health, social care and all other areas of public life which matter to disabled children and young people (i.e. everything).

If this post leads you to want to consider challenging cuts in your area, you may want to contact a specialist solicitor – and you will need to move quickly, as if funding is to be restored a judicial review would need to be heard within a matter of weeks if at all possible.

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.

New case law updates on disabled children’s rights

Quick post (first for some time) to flag the new case law updates published by the Council for Disabled Children with its Summer Digest. These will hopefully be of interest to disabled young people, families and professionals.

The first covers two Upper Tribunal appeals brought by Hillingdon and Buckinghamshire. Both appeals considered the appeal rights for young people (aged 16-25) and the approach to be taken where a young person lacks capacity to bring their own appeal. The Buckinghamshire decision gives important guidance on the meaning of ‘education’ for young people.

The second is about another important Upper Tribunal decision (this time in an appeal by Staffordshire) which gives clarity about school transport entitlements for young people. It is important for young people and families to note the conclusion that the Tribunal cannot resolve disputes in relation to school transport and that the correct remedy is judicial review.

The third concerns a successful human rights claim against Kent in the context of care proceedings. The judgment suggests that serious failures to comply with the duties owed to disabled children under the Children Act 1989 may result in breaches of the Human Rights Act 1998, which may in turn lead to damages being awarded.

All three updates are themselves summarised in the main CDC Digest (see p14 onwards).

Legal Essentials for Advocates and Activists, Manchester, 9 Feb 2016 (New Date)

A quick post to say that I’m running ‘Legal Essentials for Advocates and Activists‘ training with the Public Law team at Irwin Mitchell in Manchester on  9 February 2016*.

The training is aimed at non-lawyers who need to use the law to advocate for individual clients and / or for wider social change. Some of the key topics covered will include:

• How to make real the rights in international conventions – e.g. children, disability
• What the ‘common law’ is, and how some key concepts – rationality, fairness, duty to consult – can be used in advocacy work
• Powers and duties – and the key distinction between ‘specific’ and ‘general’ duties in understanding rights

The training is priced according to organisation size and the rate for individuals and small organisations is £50 plus VAT – all the free places for disabled people and carers having now been allocated.

For more of a taste of the kind of issues we will be covering on 9 February, the ‘Legal Fundamentals’ chapter of Disabled Children: A Legal Handbook is now available for free download.

Please spread the word about the training to anyone who may be interested in getting a better understanding of how the law works in practice. We will hope to run the training in other cities in future years.

More information on the training and booking details are available here.

*Moved from January 2015 as a result of a problem with room bookings

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:

—

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