Human trouble – #LBBill, disability rights and the law

There was a brilliant event last night up in Manchester to open the Human Trouble series of events at Manchester Met (the rest of the series looks great, check it out). Thanks to Drs Lucy Burke and Katherine Runswick-Cole for making it happen. After an afternoon of debate and discussion about the first draft of #LBBill, the evening was a #JusticeforLB get-together – both a celebration of progress and a marker of how far we have to go. Sara spoke about Connor and showed the film that was played at his funeral which left us all in bits. George outlined the campaign to get justice for LB and how the bad things that happen to disabled people are human rights violations, plain and simple. Mark told the story about how Steven was taken away for ‘respite’ and not allowed to come home, which never ceases to shock me in its basic lack of humanity, and explained how the idea for #LBBill emerged. And I ended up by saying something like this, about the law as it is and the law as it might be.

If you haven’t yet done so, please pledge your support for #LBBill. The text below is a cleaned up and slightly expanded version of what I said last night, with added links.

The trouble with adult social care law is that we constantly lose sight of the human.

For some time it seemed that lawyers and judges thought that the point of adult social care legislation was to ensure that people were kept safe – although of course our institutions have manifestly failed to do even this.

But we are told that we are at the beginnings of cultural change. The Care Act places human dignity at the centre of the duty to promote well-being that will start the new legal scheme for adult social care, in force from 1 April. The most liberal judges are getting it too:

  • First Lord Justice Munby highlighted that all life involves risk, and asked the question, ‘What good is it making someone safer if it merely makes them miserable?’[1]
  • Then Baroness Hale stated simply that ‘a gilded cage is still a cage’ – this in the most important case for disability equality yet heard in this country, the Cheshire West case in which disabled people’s right to liberty was finally held to be equal to everyone else’s.

In fact the courts are getting better generally (not by any means universally) on disability rights – we’ve not only had the ringing victory in the Supreme Court in Cheshire West, but two other Court of Appeal cases – Bracking and Burnip – where policies which would damage or were damaging the rights of disabled people were overturned.

Burnip saw the Court of Appeal hold that the housing benefit regulations indirectly discriminated against disabled people who needed additional space in their homes because they could not share a bedroom. Perhaps the most important aspect of this case was the willingness of the Judges to consider the UN Convention on the Rights of Persons with Disabilities, which was said by Lord Justice Maurice Kay to have ‘the potential to illuminate our approach to both discrimination and justification’. This is the same rights-based approach which was adopted by the Supreme Court in Cheshire West.

Bracking was the successful first round challenge to the decision to close the Independent Living Fund. This audience will know that the ILF provides vital support to help disabled people live independently in the community – precisely the same aim as the #LBBill. The first time round the challenge to the closure decision succeeded on appeal because the Minister had not complied with the public sector equality duty (section 149 of the Equality Act 2010) when it was taken. Astonishingly, the majority of the Judges in the Court of Appeal in Bracking held that the Minister did not understand what the (devastating) impact would be of closing the Fund on the disabled people who benefit from it when the closure decision was taken. Nor did the Minister have specific regard to the specified needs in section 149, for example the need to advance equality of opportunity, this first time that the closure decision was taken.

The European Court of Human Rights is also getting its act together on disability cases – see the recent successes in challenging the treatment of disabled people in Eastern Europe in cases such as Stanev and Campeanu – and Mrs McDonald’s partial victory in McDonald v UK, which I will come back to. The Eastern European cases centre on their institutions – but of course exactly the same kind of rights violations through restraint, forced medication and lack of respect for human dignity happen in institutions here. At the link above, Lucy Series describes Stanev as being about ‘poverty, isolation, institutionalisation, incapacity and access to justice’. Sound familiar at all?

But – the Courts can only apply the law as they find it. So after the ILF closure decision was quashed by the Court of Appeal, the new Minister (same government of course) took another decision to close the Fund, and this time he made sure he could show he understood precisely how bad this would be for the disabled people affected. As such the High Court held he complied with the PSED – which is only a duty of ‘due regard’, not a duty to achieve results.

Similarly when Elaine McDonald tried to show that her human dignity was being infringed by her being forced to wear incontinence pads at night rather than have a carer help her to use the toilet, she got nowhere in the domestic courts and only succeeded partially in the European Court of Human Rights (ECtHR). Her victory at the ECtHR was on the basis that her right to respect for private life under Article 8 ECHR was breached during the period that there had been no reassessment of her needs, but this did not result in her carer support being restored. This focus on process over substance seems to be a growing theme in ECtHR disability cases.

So getting the content of the law right is critically important. Having just read the whole of the new Care Act on the way here, there is no way we will be calling for more law just for law’s sake. The Care Act will bring some major improvements, but the short point is that it doesn’t go far enough. The group working on #LBBill think the law needs to change further – in at least the three ways set out in the first draft of the Bill and probably several other ways besides:

  1. New rights and duties to ensure all disabled people get the support they need to live in the community (clauses 1-3).
  2. Better safeguards when the state takes responsibility for where a person lives, including rights to approval for disabled people, families and where necessary the court, provision of proper information to inform decisions and careful review and scrutiny so people don’t get lost in the system (clauses 4-6).
  3. Changes to the Mental Capacity Act to strengthen the respect for disabled people’s views and give families and friends a proper right to be consulted (clause 7) and to the Mental Health Act to stop people with autism and learning disabilities being detained and treated under that Act where there have no mental illness (clause 8).

None of this is set in stone and we know clause 8 in particular is controversial. We are grateful for all the feedback we have had on draft one and we welcome more – either now or when we publish draft two towards the end of February.

Those who say it’s not just about more law are plainly right. We need at least three other things, and no doubt more besides:

  1. Better use of the existing law. Despite rumours to the contrary, we still just about have a legal aid system in this country and unlawful practices by public bodies can and should be challenged through judicial review. We need to keep being innovative as well – for example challenging the charities (including those with 99% state funding) who keep building new institutions. Nothing is truer in relation to adult social care than the maxim that if you build it the commissioners will come. There are legal proceedings which can be brought against charities which are very similar to judicial review and this route is something we need to consider and use.
  2. Genuinely radical approaches to funding – like Chris Hatton’s idea of guaranteed long term minimum Personal Budgets – why not lifetime? – for people currently in institutions. We definitely don’t need more funding tied up in bricks and mortar – the money needs to be with the human.
  3. Changing the culture to one where disabled people are properly respected as humans and rights holders and where (to again quote Lord Justice Munby) the state is the servant not the master of disabled people and families. This means disabled people need to be in the driving seat – not just as consultees but as employees, co workers in the process of making things change.

The law can lead on cultural change – see for example the way society has changed with and through the equality legislation. But we only change the law and change the culture by speaking with one voice, which has been power of the Justice for LB campaign right from #107days.

Connor’s death must be the moment when nothing is ever the same again, not just for the people who loved him but for all of us. Getting a Bill which shares his nickname through Parliament and into law will be just one small part of that. Together we can make that happen and make it the best Bill it can be.

Thanks for all your support and we welcome your questions and contributions tonight and for the rest of the discussion and debate about the draft Bill.

[1] Local Authority X v MM and KM [2007] EWHC 2003 (Fam) http://www.bailii.org/ew/cases/EWHC/Fam/2007/2003.html