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.

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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 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.

 

Day 4: Twelve Days of Christmas #LBBill

Day 4 of the #LBBill Twelve Days of Christmas and today we focus on Clause 3. We have an audio introduction to the clause with easy-read images here:

Clause 3 is about making sure that disabled people can access the care and support they need to live in their own homes, on their own, or with friends or family as they choose. The clause would impose a ‘sufficiency duty’ on Local Authorities and NHS bodies to make sure that there is the right amount of community support services so no-one is forced into residential care to have their needs met.

The purpose of the duty is to prevent isolation and segregation from the community. This is why we will need to define ‘residential’ care very carefully in the second draft of the Bill, because a disabled person may be more isolated and segregated in a ‘supported living’ setting than in a small community based residential home. What we think matters is not the label given to the place a person lives but what their life is actually like there. Do you agree?

Let us know what you think, on the feedback pages of the blog, on facebook, twitter, or by email. Thank you.

Day 1: Twelve Days of Christmas #LBBill

It’s the first day of Christmas and even though we know most of you will likely have dinner to cook, or be in a sprout coma for the next couple of days, or working and caring around the clock… we wanted to take this opportunity to wish you a Happy Christmas, and also to direct your thinking towards the #LBBill.

Over the Twelve Days of Christmas we’ll send you an email each day asking for your thoughts, comments or feedback. We will focus on one element of the proposed #LBBill, or our journey together so far, each day.

To kick us off, in case any of you missed it during the #JusticeforLB Advent Calendar (it was Day 7) we have Santa Claus discussing the #LBBill

Secondly, we have an audio introduction with easy-read images requesting feedback on the #LBBill. Please share this far and wide with your networks:

We’ll be back in touch tomorrow, but for now, please accept our wishes for a Happy Christmas.

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