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.

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

No voice heard, all rights ignored?

The train to the Housing and Support Alliance annual conference on independent living and people with learning disabilities seems an appropriate time to set out some thoughts on the Government’s response to the No voice unheard, no right ignored green paper.

‘Not best pleased’ would be one way to summarise the reaction from ‘stakeholders’ (ugh) to the response. Another way would involve plenty of expletives. The title of this post, without the question mark, was the pithy summary from @socialworkops on Twitter.

To understand the frustration it’s important to remember the context for the Green Paper. The former Minister, Norman Lamb MP, had reached a view that all the concordats and agreements in the world were not going to be enough and that legislation was required to give new hard-edged legal rights. There was plenty of room to debate what those rights should be (I had my tuppence here) but the principle seemed clear – new legislation was needed.

However after the General Election Mr Lamb was no longer Minister and the new government seems rather less enthusiastic about legislating in this area. The response was delayed and when it finally arrived it could be summarised (fairly?) as ‘issue some guidance and kick the rest into the long grass’. Or in the language of the consultation, the proposals ‘should be seen as part of an ongoing and evolving dialogue’ (p6, para 7). Let us know when you’re ready to stop talking and actually do something.

Another part of the frustration, as Rob Grieg puts very well here, is that we’ve had very good strategies and guidance for learning disability for years in the form of Valuing People and Valuing People Now. We don’t need another strategy or more guidance, we need some real action to deliver these shared goals.

So does the response meet the two tests in its title? In terms of voices heard, Chris Hatton has done some excellent comparisons between the Valuing People Now consultation and this consultation. Chris shows that the Department has heard from far fewer disabled people this time round – which is unacceptable as government should be getting better over time at engaging with the people their policies affect, not worse. As Chris says, when properly analysed ‘The numbers of people responding to the NVUNRI consultation start to look perilously small’.

And on the second test – well, it’s pretty clear that the Minister’s vision of new hard-edged rights has been ignored. In legal terms, guidance can be very important. It all depends on its legal force – some guidance must be followed by decision makers in the absence of a considered decision that there is good reason not to do so, other guidance (‘have regard’ guidance) is just something that decision makers must take into account.

However it’s surprising (to put it mildly) that the Department doesn’t appear to know yet which laws it will use to issue the guidance here. See para 8, p6; ‘we will rapidly determine the most appropriate powers under which to act to have the best and strongest effect’. Again, let us know when you’ve made your mind up.

So whether the guidance is likely to be legally important depends on what the Department eventually decide in relation to the powers they will use to issue it. But what about its practical effect? Experience suggests that the likely fate of more guidance is to end up on more shelves. I’m not saying for a moment that if Parliament passes new laws they are automatically followed (hello, Care Act 2014) but the chances of cultural change must be must higher when there is new primarily legislation, not merely further guidance. Surely? Please let this be true or we are wasting a lot of money on those MPs…

Also, guidance cannot create new legal rights and duties – it can only reflect existing law. So if (as we are told at p14, para 41) there was ‘strong support for proposals about NHS commissioners sharing duties to promote individual wellbeing in the Care Act 2104 with local authorities’, why not get on and legislate for this now?

It is also concerning that even phase 1 of the proposals (which includes the new guidance) will take place ‘during the current financial year (2015/16) and into 2016/17’ (p9, para 15). So we may have to wait quite a while even to see the guidance. The grass for the guidance may not be long, but it could certainly use a trim.

There are some more interesting ideas in phase 2, including the named social worker proposal (*cough* funding *cough*) and the idea of extending Care and Treatment Review principles to local authority-led placements. However there is no timeframe for this phase. We are told at para 16, p9 that ‘This phase will involve further consultation with stakeholders, with any resulting legislation to be introduced as soon as parliamentary time allows’. So not only will there be more consultation (why?), but the real mischief here is that there is no legislative slot allocated for any Bill in the Parliamentary timetable. Doesn’t look from this like there is any chance of new legislation until the end of next year at the earliest – hope I’m wrong.

Phase 3 is described as ‘more radical solutions’, however the summary only lists two:

• ‘monitor implementation of the new service model for commissioners of health and social care services, and of CTRs on care planning, admissions, transfers and discharges and consider the need for further legislative proposals in response to review of impact’. I’ve read this three times and I’m still not sure I understand what it means.
• ‘further consideration in principle of whether and how the Mental Health Act should apply to people with learning disabilities and/or autism and if this remains appropriate’. I know this is a controversial issue but surely the point of the Green Paper consultation was to allow the Department to reach a view on the principle here, subject to further consultation on the detail? As I read this it essentially means ‘no change’. Note also (p21, para 81) that ‘some stakeholders, especially individuals, their families and supporters, and the voluntary and community sector were keen on the principle that some sort of change was needed’ (emphasis added). No voice unheard?

So that’s the government response. I’d contrast it to the coherent package of new rights that we have set out in the second draft of #LBBill, with input from a wide range of disabled people, families, professionals and allies. Of course a key difference is that #LBBill is trying to improve the legal framework so disabled people can realise their right to independent living and community inclusion generally, and the Green Paper response is trying to fix one part of the problem for one specific group of disabled people (supposedly ‘the people who need most help’, see the response at p12, para 31). Even if I fundamentally disagree with the second approach, it is still terrible to see the opportunity to strengthen the rights of this group lost.

Two slivers of light:

1. New guidance won’t necessarily be useless. It all depends what it says and even more importantly what statutory force it has. Let’s hope it is strong and clear guidance with the greatest possible legal force.
2. The Law Commission are working up proposals for a new scheme to replace the Deprivation of Liberty Safeguards which may yet result in legislation that contains some of the #LBBill ideas. Given the Department’s response, there’s now a huge amount riding on the Law Commission’s draft Bill due in 2016.

Other than that, looks like it’s back to the private members’ bill ballot for #LBBill in summer 2016.

I can’t let this piece end without highlighting something said in the Minister’s foreword to the response (p4). Towards the end of his piece, the Minister (Alistair Burt MP) says; ‘As a country, a key measure of our success will be how we care for the weakest and most vulnerable in our communities’. There are so many things wrong with this sentence it’s hard to know where to begin – so I’ll just suggest that if anything makes people with learning disabilities ‘weak’ and ‘vulnerable’ it’s government policies and state actions, from cutting social security and legal aid to detaining people without lawful authority. It’s hard to see how any real change can come from a position where disabled people are perceived as weak and vulnerable victims needing to be saved.

Easier read – Getting away with ignoring disabled people’s rights

This is an Easier Read version of my latest blog post on ‘Impunity’ in relation to breaches of disabled people’s rights. Thanks as always go to Anne Collis at Barod.

There’s a law that says that local councils must go to court if they want to take away someone’s freedom to get up and leave a place.

Andy McNicoll did some work for Community Care magazine.

He found that over 50 councils hadn’t gone to court in any of these cases.

But those 50 councils knew of over 6,000 cases when they might be taking away someone’s freedom.

That means over 6,000 times that someone’s rights are being taken away – and there are many more cases.

So what’s going to be done about it?

I don’t know if anyone will do anything about it.

The British Institute for Human Rights is sending tweets about how human rights make a difference to disabled people and elderly people.

Elderly people in a care home were being trapped in special chairs that stopped them getting up.

This wasn’t just bad care. This was against their human rights. It broke the law.

Someone who knew about human rights went into the care home. He talked to the staff.

The staff have stopped using the special chairs.

I am glad that this has stopped.

But that is not good enough.

The care home broke the law. They shouldn’t get away with it.

International human rights law talks about impunity.

This means someone can get away with breaking the law, and you can’t do anything about it.

It seems to me that this is what is happening in the UK.

Disabled people have legal rights.

If someone takes away your legal rights, you can go to court and the judge will make sure you get your legal rights.

But in day to day life, this is not happening.

This is why:

• You need to know you have legal rights
• You need to know someone has taken away your legal rights
• You need to know you can go to court
• You need the energy to take your case to court
• You need a specialist solicitor
• You need to get legal aid, or find another way to pay a solicitor to help you go to court.

So in day to day life, it feels like councils and services can take away people’s legal rights and there’s nothing you can do about it.

What happens if you do take a case?

You get an apology. You may get a small offer of compensation.

But does that really change things?

Does it make sure no-one else gets their legal rights taken away?

What else can you do?

• You can go to the Ombudsman.
• You can go to an inspection body.
• You can ask the Secretary of State to do something

Will any of those make a difference for you or for other people who are having their legal rights taken away?

When we drafted #LBBill, we had to think hard about this.

Everyone wanted a new law

But many people assumed that the law will be ignored, unless the law includes serious punishment for breaking it.

What punishments might work?

• Fining people
• Managers losing their jobs
• Closing down a service?

I don’t know.

I do know that something called a judicial review can work. You can still get legal aid for a judicial review.

We need to stop letting people get away with breaking the law.

We need to take our cases to court more often.

We must never keep quiet because “everyone does it”. We must always speak out.

If enough people take their cases to court, maybe local councils and services will realise they must obey the law.

The difference #LBBill will make

I am re-posting here the post I wrote for Justice for LB, explaining why I think #LBBill is so important as part of the campaign for disability rights. I would be very grateful if everyone who agrees could take five minutes to contact their MP and ask them to support the Bill. It will take multiple contacts from campaign supporters to persuade MPs that this is an important issue.

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It is such a thrill to see the map of the UK turning green as Justice for LB supporters contact their MPs to ask them to support #LBBill, the proposed new law to reinforce disabled people’s right to live in the community with choices equal to others.

Getting the Bill to this stage has involved the collective wisdom of a huge number of passionate and committed people. We have had input on the content of the Bill from disabled people’s organisations, individual disabled people, families, carers, friends and allies. The text of the second draft of the Bill is much improved from its first draft, with a stronger rights focus including implementation of the right to independent living in Article 19 of the UN Disability Convention.

There are some ideas in the bill that can be traced back to one individual, like Mark Neary’s original idea that all placements made by the state should be subject to approval, which is reflected in Clause 5. Others have emerged from the free-flowing discussion, debate and dialogue that has characterised the process so far.

We had hoped to have more time to debate Draft 2, it’s my fault we don’t, because I’d thought the ballot for private members’ bills was in July, whereas in fact it is on 4 June. This is the kind of mistake that would get a professional campaigner fired, but as we are all volunteers and no-one’s in charge I’ll probably get away with it. Apologies nonetheless.

So the key action now is to get as many MPs as possible informed about and supportive of the Bill, so that when we know the outcome of the ballot we have the best chance of getting a high-ranking MP to sponsor the Bill (see the #LBBill process post for a more detailed explanation of this).

One of the question supporters are likely to be asked by MPs and their staff is what difference would #LBBill make, and in particular, wasn’t this all dealt with last year in the Care Act 2014? The short answer to these questions is, a huge difference, and no. A more compelling answer to the difference question has been given by Sara Ryan in an amazing post as part of this Week 10 of #107days.

So I’ll take the lawyer’s question, which is why the Care Act isn’t enough.

I’ll be the first to agree that the Care Act is a step forward. The well-being duty in Section 1 has the potential to transform the approach to how social care is provided to disabled people. However, the Care Act is an act about social care, it says nothing about the NHS services that many disabled people need. It also falls far short of implementing a right to independent living.

In particular the Care Act doesn’t do any of these things which #LBBill would do:

1. Require the state to ensure that all disabled people can live in their community, with choices equal to others and the support necessary to ensure their full inclusion and participation in the community (Clause 1)
2. Expressly reject any idea of capping expenditure on care at home at the level of the cost of residential care (Clause 2). This is likely already to be unlawful but it is known that this practice goes on and it should be outlawed.
3. Require the state to secure in every area a sufficient supply of community support, and to make sure disabled people are employed to plan and commission these services (Clause 3)
4. Ensure that the most appropriate living arrangement is made for every disabled person who needs state help, which will generally be the arrangement they choose (Clause 4)
5. Require appropriate approval of all living arrangements made by the state (Clause 5)
6. Require reporting on all living arrangements made by the state, to create the disinfecting effect of sunlight which is so badly lacking at present (Clause 6)
7. Make the Mental Capacity Act 2005 more respectful of the rights of disabled people and their carers, as a prelude to proper systemic reform of the MCA (Clause 7)
8. Take people with learning disabilities and autism out of the scope of the civil sections of the Mental Health Act 1983 (Clause 8)
9. Ensure the provision of appropriate community mental health services to people with autism and learning disabilities (Clause 9)
10. Abolish the use of secret ‘panels’ and require disabled people and those around them to be properly involved in all decisions made about them (Clause 10)

So, none of #LBBill duplicates anything that is in the Care Act, or other existing legislation. It’s all new and it’s all what the community of #JusticeforLB supporters has said is needed if the law is to properly reflect and respect disabled people’s human rights.

With the government expected to announce today its intention to repeal the Human Rights Act and replace it with a British Bill of Rights, let’s get our politicians thinking about the rights disabled people and their families have said they want and need to be enshrined in law. Please keep pushing so that every MP knows about #LBBill and knows how much it matters in advance of the ballot.

#LBBill draft two published

On the eve of the general election, the Justice for LB campaign published draft two of #LBBill. The proposed new law in LB’s memory is intended to promote disabled people’s right to live in their community with choices equal to others. Thanks to the hundreds if not thousands of people who gave feedback on draft one and to all everyone who has worked on draft two.

The purpose of this post is to flag the materials published with draft two of the Bill and invite comment and feedback. Changes can still be made and a further draft can be produced if needed. We would also welcome your support for the Bill – you can sign up as a supporter here if you have not yet done so.

The new materials are:

• Draft two of the Bill text, in clean and track changed versions
• The updated Explanatory Notes
• The Easy Read versions of the Bill, the background and a summary (quick guide)
• A blog post from Mark Neary giving more context. Mark’s post includes one of my favourite ever bits of his writing: ‘If the State can’t get their culture right, then just apply the sodding law. You can sort your culture out later.’
• A blog post from me about some of the key changes

For more background, please see the Bill website and my earlier posts on this blog.

We look forward to your thoughts and comments and hopefully your support. Once we have new MPs we will be lobbying them all to support the Bill, including through adopting it if they are chosen in the Private Members Bill ballot in July.

#JusticeforLB

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#JusticeforLB

#JusticeforalltheDudes

Easier read – #LBBill – the first draft

Thanks as always to Anne at Barod for these easier words.

We have written our first ideas for #LBBill. This is called a draft.

You can read the draft on the #LBBill blog including the Easy Read version.

A big thank you to Change, Alicia and Dave for the Easy Read draft.

We need people to say what they think about the draft #LBBill.

We know the Bill must:

• Make it the law that disabled people have a right to be part of their community
• Make it harder for anyone to be forced to go away from home.

It is a bit like the Care Act 2014. But #LBBill is about all services including health, not just adult social care. And we don’t mind who provides a home and support. The important thing is that it is their home in their community.

Here are 4 important things from the draft #LBBill:

• The Government must give people the right support in their own home. #LBBill stops services saying it costs too much to support someone at home. #LBBill says people must be able to get the right support locally. #LBBill says that what a disabled person wants is what is most important.
• #LBBill says the disabled person, or their parent or the court must agree before someone is moved from their own home. #LBBill says the Secretary of State must be told when this happens. #LBBill says there must be a report every year to say how many people have to move from their own home.
• #LBBill says the Mental Capacity Act needs changing. It must be changed so the disabled person and their family must have their say before anyone says the disabled person cannot make a choice. And if the person cannot make a choice, their family must have a say about what is best for the person.
• #LBBill says the Mental Health Act also needs changing. It must be changed so it cannot be used just because someone has autism or a learning disability. The Mental Health Act should only be used if someone has autism or a learning disability and a mental illness.

What next?

These are the ideas in the first draft.

We need to know what you think. We need your ideas.

Then we can write a better draft.

Please talk to us on the LBBill blog or on Twitter or Facebook (#LBBill).

Please show your support for #LBBill .

The LBBill blog has links to help you do this.

#JusticeforLB

#Justiceforallthedudes