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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Day 3: Twelve Days of Christmas #LBBill

Day 3 of the #LBBill Twelve Days of Christmas and we’d like to start with a huge thank you to those of you who have joined the discussion. We’ve seen some edits on the feedback pages here (go ahead, all welcome, add your own comment at the bottom of the document rather than editing other people’s if you prefer). There has also been ongoing discussion on facebook, twitter, the blogposts here and by email. So thank you all.

Please note if you send us other people’s details or contact information we won’t make the blog comments public (but they are all read… thanks Don). Please take the time to explain why your thoughts relate to the Bill or the relevant Clause clearly, what is obvious to you may not be to any other reader. Please also reply on specific clause pages where possible.

Today we move onto Clause 2. We have an audio introduction to the clause with easy-read images:

Clause 2 deals with a very specific problem. We know of cases where a Local Authority or NHS body is refusing to provide a disabled person with the care they need at home on the basis that they could provide the same care more cheaply in a residential setting. We think this is wrong, and we also think the Department for Health would agree with us.

However, not every Local Authority or NHS body seems to accept this, so we think we need the law to spell it out. Clause 2 would prevent the cost of residential care being taken into account at all when deciding what level of care to provide for someone at home. It seems to us this is obviously a good idea. Do you agree? Have we missed something?

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.

#LBBill Support and feedback so far

We’re delighted to share that we have broken the 1,000 barrier of support pledges. You can see who has pledged here.

We have also created an area of the website where you can view the feedback we’ve received on the first draft so far, and add comments to it yourselves. Swing by here to have a look.

Please keep your thoughts coming.

Over 800 pledges of support for #LBBill

In the last week there has been a lot of discussion about the principles of the #LBBill. Some related to Stephanie Bincliffe’s inquest, some to the Bubb report, and yet more to the brilliant article that Saba Salman wrote for the Guardian, published online and in print last Wednesday.

Screenshot 2014-12-01 11.36.56

The conversations continue as we speak with an open discussion in Manchester, organised by Eve Holt and PSG Speak Up

As well as the discussions, which are crucial to developing the next draft of the Bill, we are also getting more pledges.

We now have over 800 pledges of support for the #LBBill, 780 are from individuals, 31 from organisations and 1 from a Parliamentary Candidate.

We will be following up with others that we have spoken to recently, including the Minister Norman Lamb, to try and get them to publicly pledge their support. The Minister has done this on a number of occasions, including on BBC Radio Oxford, and when we met, so we’re hoping he’ll pledge.

We have also had some interest from the Labour Party via Andy Sawford, MP which we are actively pursuing.

Please keep pledging and keep sharing the campaign. You can see all those who have pledged their support on the page here.

Thanks again for the support, let’s make #LBBill happen. To pledge takes 60 seconds, click here, complete the form and then confirm when they email you. Thanks.

LBBill open discussion Manchester Mon 1 December

We are delighted to share that our friends Eve Holt from Maxwell Gillott Solicitors and PSG Speak Up from Manchester University are holding an open discussion about the LB Bill.

The discussion will take place on Monday 1st December. It starts at 10am and finishes at 1pm.

The discussion is being held at Manchester University, in room AG3/4 in the Ellen Wilkinson Building.

To book a place email PSG Speak Up by clicking here.

Barbara and Eve will take notes of the discussions and feedback and share them with us.

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