What’s next for the #LBBill?

Despite the hard work of our supporters it is now clear that there will not be a sponsor for #LBBill from this year’s private members’ bill ballot. None of the top seven MPs who were the focus of our efforts seem to have a real commitment to disability rights and all have chosen to adopt other causes.

This is of course a huge disappointment for everyone, but we always knew changing the law to help make a reality of disabled people’s right to live in the community with equal choices would probably take some time. We will be back for the 2016 ballot armed with the knowledge gained from this year (see some initial thoughts below).

We don’t have to wait until next June though. We are expecting two other developments that could give us a chance to get the ideas in #LBBill into law:

1. The Law Commission (the official body responsible for improving and updating the law) has just published its consultation paper on a new scheme to govern ‘deprivations of liberty’, cases where disabled people are subject to continued supervision and control and are not free to leave where they live. In developing their thinking the Law Commission team have shown a real interest in #LBBill and a number of our ideas our featured and discussed within the consultation. We now need you all to respond to the consultation to ask the Law Commission to adopt as many of the #LBBill principles as possible in their draft legislation. As the Law Commission has an excellent strike rate at getting its draft bills adopted this could be an excellent route to get the #LBBill ideas into law.

2. The new Care Minister, Alistair Burt, has confirmed that there will be a response to the ‘No Right Ignored’ Green Paper in the autumn. The Green Paper has been criticised by some (see the response from People First England) but it did put forward a version of some of the ideas from #LBBill. After the summer we will be pressing the government to introduce legislation in line with #LBBill as its response to the Green Paper, that was what we asked for in the campaign response and we know Inclusion London also asked for this, we hope other individual supporters and organisations did too. We hope people will lobby their MPs about this when they return in September.

So what have we learned from the process of trying to get a sponsor for #LBBill after this year’s private member’s bill ballot? Here are some initial thoughts:

1. The supporters of #JusticeforLB and #LBBill continue to be brilliant in their passion and commitment to the cause. 337 MPs were contacted, with many of you managing to get your MPs engaged and willing to discuss the issues in the Bill. Unfortunately none of these MPs won the ballot this year, which is the nature of a lottery like this.

LBBillContacted1-333

2. With some notable exceptions, MPs are not yet ready, willing and/or able to engage properly with online campaigning. The level of response to tweets to MPs was low. MPs did better with email, but even then a surprising number of emails from constituents went ignored. Lots of others to Conservative MPs got identical template responses, which on the plus side at least means we got their attention sufficiently for someone to produce a template! We may need more offline campaigning next year. If people turn up to MPs’ surgeries in person they are a lot less easy to ignore than an email or tweet.

3. We almost certainly need to start earlier, and we could make use of some of the Parliamentary processes like All Party Parliamentary Groups to help get MPs ‘warmed up’ to the Bill before they get lobbied by their constituents. Of course, next year we will have the benefit of all this year’s work to build on.

4. None of the big disability organisations have really got behind the Bill. The National Autistic Society and Mencap sent a tweet each in support, but as far as we know that was the limit of the big charities’ public support. By contrast there has been brilliant active support from some disabled people’s organisations and individual disability campaigners. Would active support from the big charities have made a real difference this time? We’ll never know, perhaps we’ll find out in 2016.

5. There are fewer disability champions in the House of Commons that you might expect, and certainly fewer than we need. As such we all have a responsibility to make sure our MPs know that disability rights issues must be a priority.

So the struggle will continue into 2016 and beyond. But hey, why should we expect to change the law in short time when it’s taken two years to get precisely zero justice for LB himself?

All comments and suggestions on next steps are welcome below. You can also post any ideas here about the content of Draft 2 of the Bill or email us. We would very much appreciate events being held by local groups to discuss the Bill in the coming months, all the resources you should need are here.

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What will the #LBBill cost?

One of the key considerations that we have had to consider since proposing and developing the #LBBill has had to be about whether it makes financial sense! As much as quality of life experience for disabled people is our paramount concern, it would have been remiss of us to draft and co-produce a Bill without considering the question of what the Bill would cost. To that end Professor Chris Hatton, has done some number crunching and projections for us:

Obviously, human rights shouldn’t come with a price tag. Equally obviously, MPs thinking about sponsoring the #LBBill as a Private Member’s Bill are going to ask the question about the cost consequences of implementing the #LBBill. This short blogpost cannot provide a definitive answer to this question, but it will try and sketch out some of the main cost issues involved, and suggest that the #LBBill will not result in an explosion in the costs of supports for disabled people.

Two clauses in the #LBBill involve changes to the way that public services work with disabled people to make decisions:

Clause 5. Living arrangements to be subject to approval, and

Clause 10. Duty to involve disabled people and supporters in decisions made about their care

These changes should be cost neutral, as they do not directly change the actual support offered to disabled people. Increases in time spent to gain the approval of disabled people should be balanced by reductions in current levels of pointless monitoring and scrutiny of disabled people and the consequences of services making poor decisions without regard to the person’s wishes. Substantial public money is already spent on these processes (for example, almost £300 million was spent on assessment and care management just for working age adults with learning disabilities by local authorities in 2012/13 click here for more).

Two clauses in the #LBBill specify guidance and consultation arrangements, and reporting requirements:

Clause 6. Duty to report on living arrangements and community support, and

Clause 11. Guidance

These are likely to be cost neutral, as public bodies already have a range of reporting requirements concerning their treatment of disabled people, and the reporting requirements here are likely to replace or become part of existing annual reporting arrangements (for example the Autism Self-Assessment Framework and the Learning Disability Self-Assessment Framework).

A further two clauses in the #LBBill involve amendments to existing legislation:

Clause 7. Amendments to Mental Capacity Act 2005

Clause 8. Removal of people with learning disabilities and autistic spectrum conditions from scope of Mental Health Act 1983

Firstly to ensure that the Mental Capacity Act operates in line with its original intentions, and secondly to remove people with learning disabilities and autistic spectrum conditions from aspects of the Mental Health Act. These clauses will at worst be cost-neutral, as they may prevent some people being admitted to inappropriate and expensive inpatient services (at an average cost of over £171,000 per person per year) without due process or regard to people’s actual needs both in the short-term and long-term.

The remaining five clauses of the #LBBill are explicitly concerned with services and supports for disabled people:

Together, and in concert with the clauses already mentioned, they aim to ensure that all disabled should be able to live in the community with choices equal to others and the support necessary to ensure their full inclusion and participation in the community (Clause 1. Implementation of Article 19 of the Convention on the Rights of Persons with
Disabilities).

Furthermore, public bodies cannot use the cost of residential care as a benchmark from which to evaluate people’s requests for non-residential support (Clause 2. Residential care not relevant to decisions in relation to community support for disabled people), and they have a duty to secure the most appropriate living arrangement with the disabled person, with financial considerations secondary to Clause 1 (Clause 4: Duty to secure most appropriate living arrangement).

To underpin these clauses, there is a duty to secure enough community support of the types that disabled people want and need (Clause 3. Duty to secure sufficient supply of community support), including community mental health services (Clause 9. Duty to provide community mental health services to disabled people).

Because the #LBBill would result in disabled people making meaningful decisions about where they are living and how they are to be supported in ways that have not happened to date for the majority of disabled people, it is impossible to construct a cast-iron economic model of the cost implications of the #LBBill.

However, there are good reasons to assume that an explosion in costs will not happen as a result to the #LBBill:

1) There are considerable public resources locked into inappropriate inpatient services for less than 3,000 people with learning disabilities and/or autism (over £500 million every year), with the #LBBill projected to result in a drastic reduction in these services. More is also likely to be spent on residential special schools for disabled children, from which considerable savings could also be made.

2) The #LBBill is likely to result in a considerable reduction in the number of people in more expensive and restrictive residential care homes or nursing homes (for example, over 35,000 adults with learning disabilities are in these services at an annual cost of over £2 billion, at a unit cost of almost £70,000 per year per person).

3) Less restrictive and more desirable alternatives such as tenancies with decent support, or shared lives arrangements, are on average less expensive than residential or nursing care, as are community supports such as home care and support from professionals. The savings made from reduced use of highly restrictive services would allow increased use of effective non-residential supports funded at decent levels to allow people to lead meaningful lives.

4) Sizeable amounts of public money are also spent on community-based services and direct payments (at least £1.7 billion per year for working age adults with learning disabilities, for example), which would also be part of the resources covered by the #LBBill. Under the #LBBill, as disabled people have more of a role in commissioning decisions, it is likely that more creative commissioning decisions will be made, linking services to broader supports available to all such as community leisure facilities and libraries.

Finally, it is worth mentioning that the #LBBill is consistent with and would add considerable force to the general direction of NHS England and local authority policy. In particular, the joint NHS England and ADASS ‘Transforming Care’ plans include plans to drastically reduce inpatient services for people with learning disabilities and/or autism, to correspondingly increase and improve community-based supports, and to develop effective supports for considerable numbers of children and families to reduce crises and support people to lead meaningful lives.

Overall, my view is that the #LBBill will not result in an explosion of costs in supports for disabled people. Well over £6 billion pounds per year is currently being spent on services for adults with learning disabilities, for example, yet existing services are often seen by disabled people as obstructive and unfair.

Getting the #LBBill into law is the most effective way of driving really significant changes in the lives of disabled people that are otherwise at risk, despite the best intentions of the Care Act, NHS England and local authorities.

First 100 MPs contacted #JusticeforLB #LBBill

What a phenomenal 24 hours in the Justice Shed! Thanks to all of you we now know the first hundred MPs have been informed about/asked to support the #LBBill. LBBillContactedMPs_First100

In true #JusticeforLB fashion we’ve needed to rely on our amazing ‘crowd’ to get to this point and we’re extremely grateful to each and every one of you who has emailed, tweeted, written or messaged their MP.

The Private Members Bill ballot happens in ten days on Thursday 4 June, and we’d like to reach many, many more MPs before then, so if you’ve not had a chance yet please do contact them. We’re hoping to turn the whole map green.

Please still contact your MP even if you’ve seen someone else already has done so; the more they get the message that this is important to their constituents, the greater our chance of change.

Together we can improve things for disabled people, not bad for a bit of bank holiday activism.

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 12: Twelve Days of Christmas #LBBill

As we come to the end of the #LBBill Twelve Days of Christmas, we wanted to do three things.

Firstly, we wanted to thank you all for your ongoing support and collaboration. It has always been our intention to crowdsource this campaign, to use the skills, knowledge, views and opinions of those who live and breathe this reality on a daily basis. No-one is claiming it’s the easiest approach, and I think its fair to say at times we have questioned why we do this to ourselves! However, it’s authentic and true and amazingly rewarding, not to mention useful, to see everyone contribute, discuss, debate and disagree with us. So, thank you, and please keep doing it into 2015.

We don’t have the resource to reply to all your emails and messages of support, but they are all read and all appreciated so thank you for those too. We can guarantee you that we are reading everything, and all feedback will be considered in early February.

If you’re just coming back to work today and you’ve twelve emails from us, please pace yourselves, you have until the end of the month, but we do really value your opinion and would love to hear from you.

Secondly, we wanted to reiterate the opportunities you have to hear about and discuss the #LBBill face to face in January. There are four and they were all listed on Day 14 of the #JusticeforLB Advent Calendar, so swing over there to find out more (they’re in London x2, Manchester and Leeds).

Thirdly, last but not least, we wanted to share some more responses that we received from families explaining why the #LBBill is important to them:

We are very grateful to those families who shared their thinking. For the purposes of the slideshare we had to heavily edit and just grab a sentence or two, but you can read their complete unabridged reasons here:

Why do we need the #LBBill v2

 

If you would like to add your voice to the campaign and share why it is important to you, then feel free to email us a photo and reason here. We will feature more people throughout the 2015 campaign.

Thank you all again and hopefully next Christmas we’ll be well on our way to making the world a better, happier and safer place.

Day 9: Twelve Days of Christmas #LBBill

Day 9 of the #LBBill Twelve Days of Christmas and we’re back to the detail of the Bill’s first draft with Clause 6.

Clause 6 makes absolutely sure that disabled people are not simply left in living arrangements made by the state without anyone checking up on how the arrangements are working.

Arrangements must be working well for the disabled person and recent coverage has revealed instances of abuse and neglect, so Clause 6 attempts to protect against that.

This would be done by requiring the state body to report to the Secretary of State each year about what is happening in cases where arrangements have been made which take disabled people away from their homes.

This is explained further in today’s audio introduction film with easy-read images:

The Secretary of State would have to report to Parliament on what progress is being made to help disabled people stay in their communities, in particular how state bodies are being assisted to comply with the duty in Clause 3 of the Bill to increase the availability of community support.

It is also important that Clause 4(5) of the Bill requires a review of whether the living arrangements remain the ‘most appropriate’ available for the disabled person at least every 12 months. This supports Clause 6 by making sure that the state body has the necessary information to make this report.

Do you think Clause 6 will be effective? Is there anything else we could do to make sure people are not ‘out of sight and out of mind’?

We have transferred the email comments onto the feedback pages yesterday and have been blown away with the attention to detail and feedback on each clause. Please keep it up, we’ve only three clauses left now and really appreciate the input. Let us know what you think, on the feedback pages of the blog, on facebook, twitter, or by email. Thank you.

Day 8: Twelve Days of Christmas #LBBill

Day 8 of the #LBBill Twelve Days of Christmas and it’s the first day of 2015, so we thought we’d focus on why the Bill is needed.

A couple of days ago we asked you to share with us your thinking. Today we have a slideshare from four families to explain why the #LBBill is important to them

We are very grateful to those families who shared their thinking. For the purposes of the slideshare we had to heavily edit and just grab a sentence or two, but you can read their complete unabridged reasons here:Screenshot 2015-01-01 13.13.18

If you would like to add your voice to the campaign and share why it is important to you, then feel free to email us a photo and reason here. We will feature more people at the end of the Twelve Days of Christmas, and throughout the 2015 campaign.

We hope that 2015 proves to be a very successful year for all of you, and especially for the #LBBill. Thanks again for all the support.