rightsinreality

Thoughts on the crossroads of law, politics and society – for when a tweet isn't enough. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Tag: Private Members Bills

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.

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.

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#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:

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.

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

#LBBill – justice for all the dudes – thoughts on first draft

The first draft of #LBBill has now been published and is available on the Bill blog. You can check out all my previous posts about the Bill for some background on both the content and the process.

We are all delighted to get to this point. We are particularly pleased to have such fantastic Easy Read versions – huge thanks to all at CHANGE for the images and formatting and to Alicia and Dave for the words.

This first draft is very much a start of the discussion about how the law needs to change. However we are clear about the two linked things we think the Bill needs to do:

  • Make a legal reality of disabled people’s right to be fully included in their communities.
  • Make it harder for the state to force disabled people to go away from their homes where this is against their wishes and / or the wishes of their families.

So what do these first ideas – crowdsourced as George Julian wrote in Community Care – come down to? In short the draft Bill contains one principle and three sets of ideas.

The principle is that in everything the state does it should pay regard to the need for disabled people to be fully included in their community (clause 1). There is an obvious link here to the well-being principle in section 1 of the Care Act 2014 but the #LBBill principle is broader – not least in applying to all health bodies and children’s services as well as adult social care. We are not obsessed with bricks and mortar; what seems to matter to us is not whether something is called a ‘care home’ but whether disabled people get to be a part of ordinary life going on around them in their communities.

The three ideas can be summed up as follows:

  1. Duties on the state to support disabled people properly at home – and to make sure any living arrangements made are the ‘most appropriate’ available for them. Clause 2 stops the state capping the cost of care at home by reference to the cost of residential care. Clause 3 requires the state to ensure that there is a sufficient level of support available in every local area to meet disabled people’s needs. Clause 4 is the ‘most appropriate’ living arrangement duty – requiring that disabled people’s own wishes and feelings are given top priority when this duty is in play. There is also an important requirement that living arrangements made by the state are reviewed at least annually to make sure they remain the ‘most appropriate’ available.
  2. Approval and reporting duties in relation to ‘residential’ living arrangements, designed to shine a spotlight on these cases and make sure no-one gets forgotten. We want to define ‘residential’ to include any situation where a person is moved from their own home – including certain types of supported living placements like those Mark Neary has written about as ‘modern warehouses’. Clause 5 requires advance approval for any such placements – whether from the disabled person, their parent or the court as appropriate. Clause 6 requires anonymous reporting of all such placements to the Secretary of State which will then be published in an annual report so the level of ‘residential’ placements can be tracked over time.
  3. Changes to the Mental Capacity Act 2005 (‘MCA’) and the Mental Health Act 1983 (‘MHA’) to make them work better for disabled people and families. Clause 7 amends the MCA to require proper consultation with disabled people and families before a finding of incapacity is made in relation to any decision, to ensure disabled people’s wishes and feelings and human rights are at the centre of all best interests decisions and to create a presumption of consultation with families in best interests decision making. Clause 8 – simple but controversial – removes people with autism and learning disabilities from the scope of the MHA unless they have a secondary mental illness. Although we appreciate that the MHA offers some safeguards to disabled people and families, this recent case at the European Court of Human Rights seems to illustrate perfectly why these safeguards don’t work for disabled people (see in particular para 8).

So these are the first ideas. In my view taken together they would make a real difference to the lives of disabled people and their families, particularly those at risk of going into an institutional setting. However I’m convinced these first ideas shouldn’t be the last ones, in that there are undoubtedly more and better ideas which Justice for LB supporters can help us with in the coming weeks and months. If anyone has any ideas for ways we can discuss the draft Bill please let us know via the LBBill blog or on Twitter or Facebook (#LBBill).

I can already see ways the Bill can be improved – from the macro level (we need to incorporate more fully the words of Article 19 of the UN Declaration on the Rights of Persons with Disabilities, the right to independent living) to the micro level (Deputies under the MCA should have the right to approve residential living arrangements and this needs to be included in clause 6). I look forward to hearing all the other suggestions and improvements I am sure will come now the first draft is out.

At the same time as telling us how the draft Bill can be improved, please use the links on the LBBill blog to show your support for the Bill, including using Writetothem to email your MP.

#JusticeforLB

#Justiceforallthedudes

Easier read – #LBBill – more ways to make the Mental Capacity Act work better

This is the easier read version of the #LBBill post with Lucy Series’ ideas on how to make the Mental Capacity Act work better. Thanks as always to Anne Collis at Barod for these words. Check out the new #LBBill blog for more about our ideas to change the law.

Lucy Series has a blog. She tweets as @thesmallplaces. She knows a lot about mental capacity law – the law about how disabled people make decisions.

Here are Lucy’s ideas about how we can make that law work better for disabled people and their families.

The Mental Capacity Act has rules to work out what is in someone’s “best interests”. The rules may not fit with the United Nations rules about disabled people.

Ireland has got better rules for working out what is in someone’s “best interests”.

Families must have a say. They must have a say in working out if someone can make their own choice. They must have a say if someone cannot make their own choice.

Someone like Connor should be allowed to choose a supporter to help them make decisions. Canada has good rules about this. We need a rule like this in the UK too.

Everyone needs a good advocate. The rules about advocates in the Care Act are good. They are better than the rules about advocates for people who cannot make their own choices under the Mental Capacity Act.

Everyone should have the same rights to advocates. We also need a new rule so the advocate must appeal to the court if the person does not like what is happening to them.

This is what I think about Lucy’s ideas.

  1. Let’s put some of the rules from Ireland in #LBBill
  2. Supporters is a really good idea. I think we need to put this in #LBBill. What do you think?
  3. I agree with Lucy about advocates. Let’s put this in #LBBill too.

I have told you what Lucy thinks. I have told you what I think.

What do you think? Please tell us. And does anyone have any more ideas?

#JusticeforLB

#Justiceforallthedudes

#LBBill – more ways to improve the Mental Capacity Act

After my last post about how #LBBill could improve the Mental Capacity Act (MCA), Lucy Series (who tweets @thesmallplaces and has a fantastic blog on mental capacity issues) got in touch with some excellent further ideas about mental capacity law reform. Lucy has kindly given me permission to post these ideas here. Lucy’s ideas and my initial responses are below – all comments welcome.

Lucy writes:

I’ve read Mark’s recent post (Bill, Bill and Bill) and also Steve’s post (#LBBill – Making the Mental Capacity Act work for disabled people and families). I think the proposals are really exciting and really interesting and have a few comments to make.  

On revising section 4 MCA (the ‘best interests checklist’) to place a greater emphasis on the person’s own wishes, there are quite a few tools you could use to argue for this. There is a growing consensus amongst academic and practising lawyers that the ‘best interests’ test does not comply with Article 12(4) of the UN CRPD which says that measures relating to the exercise of legal capacity must respect the ‘rights, will and preferences’ of the person. I’ve recently participated in a series of ’roundtable meetings’ at the Ministry of Justice which reached this conclusion, although the government’s own view is yet to be announced.  

If you were looking for a ‘template’ of a version of the ‘best interests’ test that places a much greater emphasis on the person’s own wishes, I’d suggest looking at section 8 of the new Assisted Decision-Making (Capacity) Bill from Ireland. I’ve outlined in this blog post why I think it’s more powerful than the MCA in preventing actions that conflict with what the person wants.

I agree with Steve that duties under the MCA to consult with P’s family are not strong enough (and neither is the duty to involve the person themselves vigorously enough enforced). But I don’t think it goes far enough to just address section 4 (‘best interests’). This section only kicks in at the point a person is labelled ‘incapable’.  But what about involving families before that point? For example, Connor’s lack of ‘capacity’ was used to exclude his family, Mark was booted out of Steven’s capacity assessments. You need something that gives the person the right to say “this is my family, I need them to help me make decisions” and gives the family the right to say “I am an essential support to this person, you can’t shut me out”.  

There are a number of legal systems around the world which allow somebody like Steven or Connor to nominate a person whom they trust as their ‘supporter’.  A supporter would have a clear legal right to help the person make decisions, so it would be extremely hard for public bodies to sideline supporters or withhold information from then.  In some of these laws, supporters can also ‘represent’ a person who has serious difficulties making decisions or communicating. In some ways it’s a bit like deputyship but their ‘powers’ to represent the person are much more limited (you couldn’t, for example, sell a person’s house as a supporter), they are chosen by the person (even if the person don’t have capacity to make a Lasting Power of Attorney) and they also have to represent an outcome based on what the person wants (so long as it’s ‘reasonable’).  If you want examples of those, Canada is the front runner. Australia and Ireland are about to introduce similar provisions, to comply with the CRPD. The time is ripe for the UK to lobby for something like this; another issue agreed at the roundtable meetings at the Ministry of Justice was that the MCA’s support provisions are far too weak.

Steve mentioned advocacy in his post.  I agree that advocacy is absolutely vital, both for families and people with disabilities. However, I think IMCA advocacy [note from Steve – IMCAs are the MCA advocates] is much, much, much weaker than the new Care Act advocates.  I am very worried that we are now going to have a two-tier system, where people who ‘lack capacity’ get IMCAs – who will have less time to spend with them and much weaker duties to challenge decisions – and people with capacity will get Care Act advocates.  Personally, I’d repeal the IMCA provisions and adopt the Care Act advocates for all the circumstances where IMCAs are currently used.  I’d also make it much, much, clearer that where a person is deprived of their liberty and they are objecting, the IMCA must initiate an appeal on behalf of the person.  It shouldn’t be left up to families to rock the boat on their behalf (although if the person isn’t objecting, and the family are, then obviously IMCAs should be available to help them).

To summarise Lucy’s excellent ideas above and my immediate thoughts:

  • Strengthening the respect given to the disabled person’s wishes and feelings – we definitely need to draw on the Irish Bill and this will inform our drafting for this vital clause in #LBBill
  • The idea of ‘supporters’ seems to me to be an excellent one and something which doesn’t change a fundamental feature of the MCA (and so is suitable for our Bill). My view is we should include this concept in #LBBill – I would really welcome people’s views about this. It seems to me to be an excellent approach generally but specifically in relation to the situation we are concerned with, when there is a dispute as to whether a disabled person should live in an institutional setting or in the community.
  • Advocacy – completely agree with Lucy about this. Why should the right to advocacy be less when a person lacks capacity to make a key decision than if they have that capacity? It seems to me hard to argue against Care Act Advocates replacing the IMCA role – we can include this in #LBBill unless anyone can raise an objection. I also like the idea very much of requiring advocates to challenge any deprivation of liberty where P expresses contrary wishes and feelings.

So that’s two new ideas for how #LBBill can improve the MCA – creating a right for P to appoint a ‘supporter’ and improving the right to advocacy. Anyone for any more?

#JusticeforLB

#Justiceforallthedudes

Easier Read – #LBBill – making the Mental Capacity Act work

This is the easier read version of my last post on how #LBBill could change the Mental Capacity Act 2005 to make it work better for disabled people and families. Thanks again to Anne Collis at Barod for these easier words.

People are talking about what to put in the #LBBill.

Here are two things people are talking about.

  • Independent advocacy. This means having someone to speak up for you, or to help you speak up. I think this will be in the new Care Act. So it does not need to be in #LBBill as well.
  • Some people with autism or learning disabilities get ‘sectioned’. This means they have to get treatment even if they and their families do not want it. The law about this is called the Mental Health Act 1983. I think this law needs changing but it will be difficult to do this. I will write about this in another blog.

This blog is about changing the Mental Capacity Act 2005.

The Mental Capacity Act is about who can make decisions.

The Act says how to work out if someone is not able to make their own decision about something. Then, it says how that decision should be taken for that person.

I think #LBBill can make two changes to the Mental Capacity Act:

  1. The Act must stop saying people’s wishes and feelings are just one thing to think about. The Act must say people’s wishes and feelings are the most important thing to think about.
  1. The Act must stop saying that professionals may listen to family members. The Act must say family members must be consulted unless it is proved that this would be bad for the disabled person.

I think these two changes will make it harder to move disabled people away from their communities where this isn’t what they want.

What do you think? Would these changes help?

Can you think of other ways to make the Mental Capacity Act work better?

Please keep talking about what you think needs to be in #LBBill.

And have a look at this beautiful quilt made in LB’s memory. 

#JusticeforLB

#Justiceforallthedudes

#LBBill – Making the Mental Capacity Act work for disabled people and families

After the initial flurry of excitement about the SEN and disability reforms, I wanted to get back to the question of what changes to the law we should be seeking through #LBBill – the idea for a Private Members Bill to help make disabled people’s right to live in the community a reality. I have already blogged about the first batch of ideas.

There has been some great debate already about what we should and should not be asking for. The question of independent advocacy has come up several times, but it seems this may be covered by the new Care Act – I’ll blog about this another time. There is also an obvious need to see if the Mental Health Act 1983 can be amended to reduce the number of people with autism and / or learning disabilities who are ‘sectioned’ into institutions. This is a challenging task and one I’ll also write about later.

For now though it seems to me that the best ideas for further content for #LBBill are some amendments to the Mental Capacity Act (‘MCA’) 2005. The MCA 2005 seeks to strike the balance between empowerment and protection for people who may lack capacity to take certain decisions. It has been the subject of significant criticism for getting this balance wrong in some key respects, much of which is brilliantly set out by Lucy Series on her The Small Places blog.

We cannot hope to completely rewrite legislation as complex as the MCA 2005 through a Private Members Bill. I do think though that we could realistically expect to ‘tweak’ the MCA to make it work better for disabled people and families. The two specific ideas so far which I think have real merit are amendments to section 4 MCA to require that:

  1. Disabled person’s wishes and feelings must be a primary consideration in any decision taken as to what is in their ‘best interests’. At the moment the wishes and feelings of ‘P’ (the person said to lack capacity) are simply one factor to be considered by the decision makers (see section 4(6)(a)). I think they could and should have greater importance than this. If P’s wishes and feelings were ‘a primary consideration’ this would mean that they had to be considered first and could only be overriden if there were very strong factors pointing another way – see the key judgment of the Supreme Court in ZH (Tanzania) which explains what this phrase means in the context of children’s best interests (in particular Lady Hale at para 33). It seems to me that this simple amendment would instantly reduce the number of disabled people who are placed in institutions when this isn’t what they want.
  2. Family members of disabled people have a right to be consulted about all decisions taken in the person’s best interests, unless to do so can be shown itself not to be in the person’s best interests – in legal terms a ‘rebuttable presumption’ in favour of family consultation. At the moment, section 4(7) states that decision makers must take into account the views of and, if it is ‘practicable and appropriate’ consult the family members of P and others engaged in their care and / or concerned about their welfare. I don’t think this requirement is tough enough; it seems to me that the ‘wriggle room’ this gives to public bodies. is very unhelpful when we know that too often the MCA is used improperly to exclude families from decisions made about the care of their loved ones. 

Neither of these amendments would fundamentally change the MCA – but I think each of them could really help as part of a package of reforms designed to make it far harder to place disabled people away from their communities

I would be very grateful for thoughts on these ideas and any other ways in which the MCA could be improved from the perspective of disabled people and families. As ever, none of these ideas is set in stone – we do not even have a first draft of #LBBill yet so there is plenty of time to discuss and debate these crucial issues.

PS – if you haven’t seen it yet, check out the absolutely beautiful quilt that has been made in LB’s memory.

#JusticeforLB

#Justiceforallthedudes

Easier read – #LBBill – what happens after June 2015

This is the easier read version of my second post on the process and timeline for #LBBill – thanks as always to Anne at Barod CIC.

 

My last blog says what will happen with #LBBill from now until June 2015.

This blog is about what happens after June 2015.

 

Why is June 2015 important?

June 2015 is when the ballot happens.

The ballot is when the names of 20 MPs are pulled out of a hat.

Only these 20 MPs can have a Private Members Bill.

The first MP gets to go first with his or her Private Members Bill.

The second MP gets to go next.

Usually, there is only time for the first 6 MPs to get a go at changing the law.

 

Here is what may happen in the ballot.

 

    1. None of the 20 MPs support #LBBill

We start planning for the 2016 ballot.

 

  1. An MP outside the top 6 supports #LBBill

We try to get a lot of publicity for #LBBill.

We try to get the Government to support #LBBill.

Then we start planning for the 2016 ballot.

 

  1. An MP in the top 6 supports #LBBill

We help the MP to make the Bill into a new law.

 

This is what happens if an MP who supports #LBBill gets chosen in the ballot.

 

June 2015 to Autumn 2015

We must work hard to get the Government to support #LBBill.

We must work hard to get all the MPs to support #LBBill.

We will need everyone to talk to their MP.

We will help you to do this.

 

In Autumn 2015, the MPs get to say what they think about #LBBill.

If the MPs vote to support #LBBill, we go to the next step.

If the MPs do not support #LBBill, the Bill stops.

 

Autumn 2015 to Spring 2016

Next step is to go to the House of Lords.

We need to get:

  • a member of the House of Lords to be in charge of #LBBill
  • all members of the House of Lords to support #LBBill

 

If the House of Lords votes to support #LBBill, we go back to the House of Commons.

Then we need to talk with the Government.

If we are lucky, we will end up with a #LBBill that does what we want and that the Government will support.

 

If everything works well, #LBBill could become law in Spring 2016.

BUT

  • There are a lot of steps for #LBBill
  • All the steps are hard
  • #LBBill has to get through all the steps to become law
  • It is very rare for a Private Members Bill to become law

 

There is a lot of support for #JusticeforLB and #LBBill

I think this means we have a real chance to change the law.

 

Please ask me questions.

You can use the comments below.

You can use Twitter (@stevebroach).

 

My next #LBBill blog will be about some more ideas about what to put into #LBBill.

 

#JusticeforLB

#Justiceforallthedudes

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