Tell your MP about the #LBBill

For those of you following #107days this is a duplicate post – for anyone who isn’t this is for your information and action: 

The #LBBill is an idea to change the law for disabled people so that they have more control over what happens in their lives. We need your help to achieve that.

We need to promote the #LBBill to all the MPs (new and old) now in Westminster. You can read the latest draft by clicking here or on the tab at the top of the page. As with everything #JusticeforLB it has been developed organically and collaboratively, gathering feedback from far and wide including hundreds of disabled people, family members and allies. You can watch a short film (6 mins) about the #LBBill, where it came from and why it’s important here:

We need to contact as many MPs as possible to make them aware of the #LBBill and ask for their support in the Private Member’s Ballot. You can write to your MP via the WriteToThem website (it’ll even tell you who your MP is if you’re not sure); you could also tweet your MP and ask them to pledge their support to the Bill. If you’re unsure of what to say, you could include any of the following:

Please tell your MP that you support the #JusticeforLB campign and that you’re asking them to support a Private Members Bill drafted by the campaign. Please also explain that supporters of the campaign have come together to draft a Bill which would promote and protect disabled people’s right to live in the community with choices equal to others and the support they need. It has become known as ‘LB Bill’ in memory of Connor Sparrowhawk (who was known as LB or Laughing Boy).

Your MP might like to know that the Bill is on its second draft and has had feedback from hundreds of disabled people, family members and allies. The Bill has mass support, as you can see by clicking here or on the supporters tab above. It builds on existing legislation, including the Care Act 2014.

Sign off encouraging your MP to support this Bill and why not ask them to encourage their colleagues to do so. Also encourage them, if they are eligible for and successful in the Private Members Bill ballot, to sponsor the Bill. It would help us if you asked them to reply to let you know whether they support the Bill. It takes two minutes to pledge their support and they can do so here: http://eepurl.com/73mXX

Please add a comment to the #107days post with your MP’s name (and their party and your constituency if you know it) once you’ve contacted them directly, this will help us keep track on how many MPs know about the Bill (and commenting there will keep all the names in one place). If your MP replies and has any specific questions or wishes to discuss the #LBBill then they can email us at LBBillFeedback@gmail.com

We look forward to the pledges of support flooding in, there are 600 MPs so we’ve quite a lot of work to do!

Pledge Poster

News on the #LBBill second draft

It is now four long months since the 12 Days of the #LBBill Christmas; we know we’ve been silent in that time here (there has been some discussion on twitter and facebook), but we thought blog readers were long overdue an update. Perhaps the most significant development has been the publication of the government consultation Green Paper: No voice unheard, no right ignored. Norman Lamb paid tribute to the #JusticeforLB team when he launched it (that includes you if you’re reading this and supporting the LBBill) and you can see our response here. So, what has happened for the LBBill in 2015 so far?

1) Feedback

We have spent time pouring over the feedback that you’ve all provided so far. You can see most of the feedback here, and there has been some sent by email. This has been absolutely critical to the process, we are insistent that the LBBill will represent what you tell us you would like, as far as we can bring all of that together. This is a crowdsourced bill, so your input really does matter.

LBBill Feedback Meeting

2) Meeting with interested people

Last month we held a meeting in London (with some joining by phone remotely) to bring together a group of interested people who had given us feedback. This group was made up of representatives from Disabled People’s Organisations, User-Led Organisations, Charities, Providers, Parents and Carers. We included as many people as the room would fit and we tried to make the group as diverse as possible. The meeting included people who had organised events to gather feedback on the first draft of the Bill, and we discussed that feedback to inform a second draft.

3) Discussion on- and offline

One of the joys of being involved with the LBBill is the enthusiasm for it, on and offline. So far this year people have spoken about the Bill at a number of events, conferences, discussions and workshops. These occasions have ranged from a self-advocate conference in Blackpool with karaoke, to online discussions in the early hours of the morning, to an All Party Parliamentary Group meeting in the House of Commons; every opportunity to discuss the Bill is important, we need more people to consider what a good, messy life for disabled people looks like.

LBBill Blackpool Conference

4) Draft 2

Following these meetings and events, the discussion and feedback was considered further and a Draft 2 was written. This draft should be available to share at the end of this month (April). We were ambitious and had initially hoped we could turn it around by the end of March but we are determined not to share a draft unless it is fully accessible, so we are taking a little longer to get the easy-read version right. Keep your eyes peeled but we should share something later this month.

5) LBBill Film

We are truly delighted to share with you this film which has been produced since Christmas. Filmed, edited and produced voluntarily by the awesome Luke Tchalenko, using footage from the November meeting, we hope that you find it useful and we’d like to see it shared far and wide:

So, even though we have been quiet on the blog, we hope you agree we’ve been busy and that we are making progress. The next stage in the process is for us to share Draft 2 (by the end of this month) and then to gather more feedback from you all.

There are also a number of occasions coming up where you can join a discussion about the LBBill. These include the Inclusion North event on National Politics and the LBBill which is taking place in Leeds on 28 April (please email Marie if you wish to attend) and the NWTDT | Pathways Associates CIC Green Paper consultation event in Preston on 12 May (please email Danielle if you wish to attend).

A new parliament will be formed in early May and we will then look to see what we can arrange around lobbying MPs, in the meantime if parliamentary candidates come knocking at your door, be sure to ask them what their policy is on supporting disabled people, and please do tell them about the LBBill.

Day 5: Twelve Days of Christmas #LBBill

Day 5 of the #LBBill Twelve Days of Christmas and we’ve taken a step back from the detail to ask what it all means. Mark Neary has written a blog post offering his perspective and the astute amongst you will have noticed that LB’s pic has been replaced by Steven. It’s really important to those of us involved with the #LBBill that we situate this development in the experiences of those who it should help.

We’d like to feature more people, like Steven, whose lives could be improved if the #LBBill and the suggestions within it became law. If you are someone, or care for someone, who you think the #LBBill could help, and you would like their face to join the campaign, please email us a photo with a sentence or two of why it would make a difference and we’ll feature them later on in the 12 Days and throughout the #LBBill campaign. (Please note we will use your pics in publicity so please only use real names if you are happy to do so). Now over to Mark:

Steven

For me, there is a really simple idea at the heart of the #LBBill. If we were discussing this in relation to anyone else in the population besides physically or learning disabled people, we would be dismissed as ludicrous. The core idea is that every physically and learning disabled person has the right to choose where they live. They may choose to live on their own; on their own with support, with their families, or in a residential setting with other people. And once that choice has been exercised, other, just as important choices open up. Once someone has made a choice about the four walls they live in, then they can begin to choose how they live within those four walls.

The simplicity of the #LBBill was on my mind a lot on Christmas day afternoon. People who know mine and Steven’s story will know that he was illegally kept away from his home in an assessment and treatment unit for the most of 2010. The local authority planned to move him to Wales but on Christmas Eve 2010, through the intervention of the Court of Protection, we were able to spring him from his detainment and he came home at the very last minute to enjoy Christmas in his family home.

Watching Steven go about his business on Christmas morning, made me reflect on how different it would have been if he had been detained in the unit over Christmas. Here are a few examples from Christmas morning:

  • Steven awoke to have fresh fruit salad for breakfast, which he chooses to have every weekday morning. This was not possible at the Unit where the choice was either toast or cereal.
  • After opening his presents, he chose to watch the most eagerly anticipated of them – the new Mr Bean DVD. This would have been impossible in the Unit as the DVD player had broken a few months earlier and nobody had repaired or replaced it.
  • Next Steven listened to his new Abba triple set CD. He might have been allowed to do this in the Unit but he would have been sent to his room with his ghetto blaster, so as not to disturb the other residents and staff.
  • I brought Steven a Basil Fawlty mouse mat and naturally, he wanted to try it out, so up to the bedroom to do some YouTube surfing. This would have been impossible in the Unit because there was no PC or Internet for the residents to use – the only PCs were in the office and only the staff were allowed to use them.
  • Before lunch, Steven wanted his annual treat – Christmas Top of The Pops. We have every episode recorded since 1993! Whether he got to watch it in the Unit was a lottery – every bit of TV viewing had to be negotiated with all the other residents.
  • And finally, Christmas lunch. That probably would have ended up on the floor as the Unit weren’t particularly tolerant of Steven’s need to have all the food not touching on the plate. It’s quite a design feat with a full Christmas lunch but with a bit of patience it can be done.

That is just one day of the compromises and loses someone living in an assessment and treatment unit has to manage. Now multiply that by 364. Year after year. What a bleak existence.

Please get behind the #LBBill. It’s for life – not just for Christmas.

#LBBill – draft one launched

We are delighted to be able to share the first draft of the LB Bill with you all.

We are looking forward to discussing how the law needs to change.

We think there are two key things that must change. We wish to:

  1. make it a legal reality for disabled people to be fully included in their communities
  2. make it harder for the State to force disabled people to leave their homes against their wishes, or the wishes of their families.

There are five documents you can download and read (right click on the image).

Book One: About the #LBBill

BookOne_LBBill

Book Two: What we want the #LBBill to say

Book2_LBBill

Word Bank – a glossary that explains some terms

WordBank

We also have full text versions if you’d prefer.

Explanatory Notes about the #LBBill

LBBill Explanatory Notes

Draft One of the #LBBill

First draft LBBill

This really is a first draft and we are seeking your thoughts, comments and feedback.

The draft will change in response to what you tell us and we will write a new version early in 2015.

Please download the documents, share them far and wide, and let us know what you think.

You can tweet us @JusticeforLB, discuss it on our facebook group, or send us an email to LBBillFeedback@gmail.com.

Our campaign has been entirely crowdsourced, we are relying on interested people to help us develop what the #LBBill should say. Please share your ideas with us about how you will collect views and input, so we can share those ideas with others.

Q&A with Bristol Disability Equality Forum

Last week Mike from Bristol Disability Equality Forum got in touch. He had some questions that had been put together by the Forum, family members and their allies about the proposed LB Bill.

We’re delighted that Forum members agreed we can post their questions and our answers here. We think they may be useful to other people to. Please add your questions too and we will try and answer them.

We would like to make some ‘big points’ at the beginning:

  • Justice for LB is not an organisation – it is a campaign which anyone who cares about what happened to Connor can get involved with. We don’t have any money or staff – but we do have a lot of people committed to stopping what happened to Connor and to Steven Neary happening in the future.
  • The idea for #LBBill came about from lots of online discussions about the need to make some legal changes to help disabled people stay at home and not go into institutions. A small team are working on the Bill, including Steve Broach, Mark Neary and Sara and Rich, Connor’s parents. It is no one person’s idea though, it ‘belongs’ to everyone involved in Justice for LB.
  • #LBBill is just one part of what Justice for LB is campaigning on – see the #107days blog for a summary of some of the other wonderful things that have happened and are still happening with the campaign.
  • The basic idea behind #LBBill is that we need to change the law to make it harder for the state to force disabled people to go into institutions and to keep them there, where this isn’t what the disabled person and / or their family want.
  • There is an obvious link between this and the wider movement promoting disabled people’s right to independent living and human rights generally, which we wholeheartedly support. We are not in any way trying to get in the way of a wider Independent Living Bill – we hope #LBBill can help raise the profile of wider disability rights issues but we completely recognise that the right to independent living and the incorporation of the CRPD as a whole is something the disabled people’s movement should lead on and is leading on. This Bill is focussed on the relatively narrow issue of reducing the use of residential care, as set out above.
  • We have a first draft of the Bill which we have been working up based on the ideas so far – but if at all possible we don’t want to publish this until an Easy Read version is ready so everyone gets the same chance to have their say. So some of the answers below are based on this draft of the Bill which we will publish for discussion as soon as possible, hopefully with the Easy Read version.
  • At this stage, we would love to hear more ideas from anyone interested as to what should go in #LBBill – whether broad themes / issues or specific legal changes.

Our responses to your specific questions are below in italics:

The campaign

1 It is excellent that People First and CHANGE are involved. Are there other Disabled people led organisations taking part?

We would like as many disabled people and/or user-led organisations as possible to get involved, and many already are. People First England and Change have supported #LBBill in the initial stages by producing the easy-read summary, because they offered to do so having been involved in #107days. We are an ‘open source’ campaign – we welcome any organisation getting in touch and deciding how they want to work with the campaign and promote / influence #LBBill. For example, People First England chose to take information about Justice for LB to the party conferences and talk about #LBBill to people they met there. They did this themselves – and we would fully support any other disabled people led organisations doing similar things. Please spread the word!

2 Are you approaching other campaigning / lobbying organisations or groups etc?

We aren’t formally approaching anyone. All the information about #LBBill and the wider Justice for LB campaign is freely available online – in relation to the Bill, all the key information is on this blog. We use Twitter (@JusticeforLB) and Facebook to spread the word. We recognise that social media is not accessible to many disabled people and we would love to work with anyone interested in putting on accessible events or making information more accessible. This is how the Easy Read document we have just launched got produced – I put a call out on Twitter, lots of individuals and organisations got responded and People First England and CHANGE ended up taking the lead with funding from the Housing and Support Alliance.

3 Have you been in touch with the UN’s CRPD committee, IDA (International Disability Alliance) or the European Network on Independent Living (ENIL)

In short, no. We would love to speak to anyone who is interested in the ideas behind the Bill.

4 How will you be spreading the word about the LB Bill, aside from using the internet?

We are hoping to secure mainstream media interest and are in preliminary discussions with a small number of journalists. However it is really down to all the individuals and organisations who support the ideas behind the Bill to spread the word through their own groups and networks. We are particularly keen for local press or media coverage and local discussions amongst disabled people and their allies, including family members, parents and carers. Please let us know if you need any additional information from us to get those conversations started.

The LB Bill

5 Does the LB Bill aim to:

a) Bring the UNCRPD fully into UK law?
b) Or, bring specific Articles of UNCRPD into UK law? For example Article 19.
c) Or, introduce or update existing laws to be in-line with the UNCRPD.

At the moment, a combination of b) and c). As said above, the aim of #LBBill is to make it harder for the state to force disabled people into residential care against their wishes. All the current draft clauses go to this aim. One of them seeks to reflect part of Article 19 CRPD, by imposing a duty on public bodies to secure a sufficient supply of community support. Another seeks to make disabled people’s wishes and feelings the starting point in any best interests decision, in line with Article 12 CRPD. If there is anything in the first draft of the Bill which is inconsistent with the CRPD then it should come out – we hope there isn’t. However – key point – the entire content of the Bill is up for discussion. That is the point of having several months between publishing a first draft, which really is just to help debate, and the time when we will need something close to a final draft Bill to lobby MPs and prospective MPs, which is early 2015.

6 Does the LB Bill aim to replace or update the relevant parts of the Mental Capacity Act (MCA), Mental Health Act and the concept of ‘best interests’ to be inline with the UNCRPD.

For example the wishes of a Disabled person and their families should always be considered in local authority and health trust decision making.

Yes – this is one of the current draft clauses. In fact the draft clause goes further – as set out above, it would make the disabled persons’ wishes and feelings the starting point for any best interests decision, as well as requiring family consultation. This reflects the recommendations from the Essex Autonomy Project, which has looked at how to make the MCA CRDP-compliant. In terms of the MHA, the first draft of #LBBill has a clause which would take people with learning disabilities and autism out of the scope of the MHA entirely, unless they have a secondary mental health problem. This will be very controversial and will need a lot of discussion and debate.

7 What would the LB Bill mean in relation to the Autism Act 2009, Children’s & Families Act 2014 and Care Act 2014. Some of us have very serious concerns about parts of these, leaving to much room for ‘interpretation’ by authorities and service providers.

Couldn’t agree more in relation to the problem with regulations and guidance which leave gaps for interpretation. Steve has blogged about the problems with the Autism Act here. The plan for #LBBill would be to put as much as possible into the primary legislation – in fact at the moment the draft Bill doesn’t mention regulations or guidance at all, but we may need this later to deal with points of detail. Again, this is all up for discussion. We also need to look carefully at the Care Act 2014, which of course is not yet in force and doesn’t yet have final regulations or guidance. There are important points of crossover, not least advocacy.

8 Has there been discussion of specific legislation, regulations or guidance around additional funding?

There has been lots of discussion about how the changes we think would help will fit with existing law. In terms of additional funding – our plan is to present a Bill which is ‘resource neutral’ – this stops the government arguing that it shouldn’t be introduced through the Private Members Bill route and takes away a major argument against what we are proposing. Of course the system needs additional funding – but we feel strongly that lots of money is tied up in institutional care which should be released to fund community support.

We hope this is a helpful first response. If you have any follow up questions please do let us know. Please also let us know if you think there are places we can talk about #LBBill, more materials we should produce or anything else we can do to make the idea more