As you may have noticed from the blanket media coverage it received, the report of the Transforming Care and Commissioning Steering Group, chaired by Sir Stephen Bubb of ACEVO, was published yesterday (Wednesday 26 November).
Is the issue the Bubb report covers, the need to transform the commissioning of services for ‘people with learning disabilities and/or autism’ important? Of course, it’s absolutely critical if we want to stop disabled young people dying in state ‘care’. Does this report merit such a level of attention? No; in my view it is in no way likely to lead to the change that is required.
To justify this criticism we need to step back a moment and consider the scale of the problem. Is is now generally accepted that people with learning disabilities ‘and/or autism’ should not be in institutions. Yet thousands are; whether in the kind of formal institutions which go by the name of ‘Assessment and Treatment Unit’, or in informal settings which might call themselves care homes or ‘supported living’ but do not support the person to be a part of their community and society (see the ‘We Have The Right’ statement from people with learning disabilities working with CHANGE at Appendix 2 to the report). In the worst cases, like Connor’s case or Stephanie’s case, people in these institutions die.
What is the proper response to this situation? In my view it must be actual system change. The title of this blog post is taken from a comment on Twitter by the wonderful @Ermintrude yesterday, shortly after the Bubb media deluge began. Forget boat rocking, we need boat breaking. This is very similar to something else said on Twitter by a professional a while back – the system is so broken that people are dying.
The truly radical solutions are out there. For example, we could give every disabled person in an institution a guaranteed personal budget, with a minimum level of funding fixed generously for a long period so that a proper bespoke package of ‘care in the community’ can be commissioned for them – as Chris Hatton has suggested along with lots of other brilliant ideas in this post.
So how does the Bubb report measure up? Well in my view it comes nowhere close to the kind of approach which might actually achieve real change. It is simply more of the same – more encouragement to commissioners to commission decent services, more support to providers, more non-specific focus on the ‘rights’ of disabled people and families. Chris Hatton has explained brilliantly and at great length why the report is so inadequate. As #IagreewithChris I’m not going to waste your time repeating his criticisms – but please do read them.
I want to focus on two related things – the tone of the report and its recommendations relating to the law.
Turning first to the tone – in my view the Bubb report doesn’t begin to address the outrage of present practice in this area. For a shining example of the right tone, check out this blog from Alicia at the Housing and Support Alliance, responding to the inquest verdict in Stephanie Bincliffe’s case. Alicia’s main point seems to me to be this – if you aren’t capable of commissioning or providing care which respects disabled people’s human rights then go and get another job.
As Neil Crowther puts it on his blog, ‘The difference between institutionalisation and independent living is the difference between abusing human rights and respecting them.’ Where human rights abuses are going on people perpetrating them need to be told to stop doing so in simple terms – not offered a range of incentives to encourage them to do things properly. As Neil says, ‘We need to name this treatment for what it is: not poor quality care as though we were simply talking about a matter of customer service. Such experiences amount to the gravest of human rights violations.’
Sir Stephen’s report suggests at 1.5 that ‘there are doubts about whether the rights of people with learning disability (not ‘and/or autism’ this time) are being respected in practice as originally intended’. No there aren’t – there is no doubt that they are not. How many deaths would be necessary to remove any doubt?
So given that grave human rights violations are being perpetrated, what does the Bubb report say about the law reform that might stop this? Answer – not much – 3.5 pages to be precise. There are four recommendations under the heading ‘Strengthening Rights’ – set out in bold below, taken word for word from the report, with my comments following:
- The Government should draw up a Charter of Rights for people with learning disabilities and/or autism and their families, and it should underpin all commissioning. This isn’t about strengthening rights at all – it’s about making people aware of their existing rights. This is a good thing – but it doesn’t address the bigger issue, which is whether those rights are sufficient. I don’t think they are – and nor do the hundreds of disabled people, family members, professionals and allies that have pledged their support as individuals and organisations for the principles of the draft LB Bill. Nor does publishing a Charter do anything to actually make the rights contained within it real. For rights to become reality disabled people need access to advocates and lawyers, the latter funded by legal aid. The Bubb report has nothing to say about the mechanics of rights enforcement – other than noting at 1.4 how important access to an advocate or lawyer can be. Where is the analysis of whether the right to advocacy in the Care Act 2014 will address the problem from next April?
- People with learning disabilities and/or autism should be given a ‘right to challenge’ their admission or continued placement in inpatient care. People already have a right to challenge unlawful placement decisions – it’s called the right to apply for judicial review. The issue is on what legal basis such a challenge could be brought. This is why clause 4 of the draft LB Bill proposes that the state should be required to make the ‘most appropriate’ living arrangements for any person who is being moved from their home. We are suggesting that the law should require that in reaching this decision the starting point should be what the disabled person themselves wants. A disabled person or family member could then challenge in court the decision of the Local Authority or NHS as to which arrangements would be ‘most appropriate’. Sir Stephen’s ‘right to challenge’ goes some way towards this. It is said at 2.2 that ‘the review triggered by this right to challenge would only recommend admission/continued placement in hospital [note – only in hospital, apparently] if it concluded that the assessment, treatment or safeguarding could only be effectively and safely carried out in an inpatient setting.’ My concern is that this medical approach would lead to disabled people’s own wishes and feelings being ignored. The right to challenge in the Bubb report therefore seems to me to be less of a right that the best interests duty already imposed by section 4 of the Mental Capacity Act 2005, which following the Supreme Court’s judgment in Aintree University Hospital v James already requires significant weight to the views of the disabled person (although not enough weight – see LB Bill clause 7 for what we suggest it should say). I also note that that in the Bubb report at 2.3 it is suggested that where disabled people do not ‘feel able to challenge the decisions taken regarding their care’ this is a role for commissioners. This is, with respect, hopeless. It is the commissioners who have responsibility for arranging inappropriate care in the first place. The proper response to this problem has to be highly skilled independent advocacy for the disabled person coupled with real support (including legal support) for family members.
- NHS England should extend the right to have a personal budget (or personal health budget) to more people with learning disabilities and/or autism, along with support to manage those budgets. No problem with this – although personal budgets are only useful to the extent that sufficient services are available in the community to buy with them (see draft LB Bill clause 3).
- The Government should look at ways to protect an individual’s home tenancy when they are admitted to hospital. This is an excellent idea – but isn’t it a function of a report such as this to make recommendations as to how this should actually be done, not merely to flag it as an idea for further consideration?
The legal section of the Bubb report is therefore rather like the rest – more of the same, rather than any kind of prescription for radical change. It also appears to suffer from the absence of specialist legal input. There is no proper consideration at all of the current legal framework and the levers it creates – for example, as Chris Hatton has noted, where is the read-across to the Autism Act 2009? This omission is particularly surprising as the Government is currently consulting on revised statutory guidance, which is how that Act gets any teeth. There is no consideration of the dysfunctional interface between the NHS and social care, or the impact of the fragmentation of the NHS under the Health and Social Care Act 2012, or of how either of these elephants in the room could be addressed.
Sir Stephen was properly criticised for his failure to engage with disabled people in the production of his report – although it appears some steps were taken on this. It’s a shame though that he doesn’t appear to have involved any lawyers – a group not normally noted for their social exclusion.
If you share any of the frustrations I have expressed above about the Bubb report, please visit the LB Bill blog and tell us how you think the law should change so the boat doesn’t just rock but finally breaks. We are thinking hard now about all the ways the second draft of the Bill could be improved. One idea which self-advocate Andrew Lee put forward very strongly at the fantastic meeting with disabled people’s organisations last week was that individuals and organisations need to be punished when things go badly wrong. Please share your thoughts on this and any other ways in which you think the law could and should change.
The group working on the Bill also met the Minister last week and it is clear the Government are listening. As well as promoting the Bill, we all have a chance to influence the Government’s ‘Green Paper’ (proposals for legal changes) which should come out in the new year – and will hopefully go way beyond the Bubb report.