No right ignored, but which rights? First response to the green paper

by stevebroach

The government has published No voice unheard, no right ignored – the Green Paper (consultation) on services for ‘people with learning disabilities, autism and mental health conditions’. Credit to the Minister for realising that the law we have at present simply isn’t enough to protect people’s rights. Even more credit to the civil servants who have turned this consultation around so quickly and in time for the General Election. It is a real sign of a changing culture when a person who has been in Assessment and Treatment Units (Gavin Harding MBE) writes a foreword to a government consultation alongside the Minister. And is permitted to say in his foreword that ‘it should have been done a long time ago’ .

The consultation runs through the election period, and what happens with it will depend on the next government. Still, it is clearly worth detailed engagement with the consultation as whatever government we have next will need to deal with all our feedback.

The consultation comes out at just the time the Justice for LB campaign is finishing work on the second draft of #LBBill. Some of the ideas from the first draft of the Bill have made it into the consultation, which shows that all the work thousands of people have put into the campaign is making a difference. But before we get to the detail a few comments on the headline approach:

• The consultation is limited in scope to people with learning disabilities, autism and mental health conditions. #LBBill isn’t – we took the view that there is no reason to limit any new law to people with particular impairments because we need a legal right for all disabled people to have their choices, wishes and feelings respected about where they live and what they do. The ‘scope’ section of the consultation document (p8) shows that it was not possible even with this brief to avoid putting forward proposals which would affect all disabled people.
• The focus on the consultation is about keeping people out of ‘institutions’. But the stories we get through the discussion on #LBBill show that institutions come in very many forms. Some of the arrangements we have heard about are badged as ‘supported living’, but in reality see disabled people kept segregated in their ‘own’ home but without any of the support they need to make their own choices or be part of the community. This is why there is no definition of a ‘good’ or ‘bad’ home in #LBBill – what matters is whether the home is what the person wants and how they get to live there.
• There are similar concerns about the idea which is central to the consultation of people being ‘close to home’ – in other words close to their families. The starkest reminder of the problem with this is LB himself, who died in an ATU very close to where his family lived. It seems to me that what is needed is the support to make sure everyone can be included in their community – not sent away only 20 miles instead of 200 miles. As Gavin Harding says in his foreword, ‘smaller units, and supporting more people in the community…should be possible everywhere’.
• Although both the Minister and Gavin Harding talk powerfully about the need to support children and young people, it seems that this consultation generally is about adults only. From the scope section on p8 the suggestion is that the needs of disabled children and young people will be fully met under the Children and Families Act 2014. The posts throughout this blog suggest that this confidence may be misplaced. By contrast #LBBill would cover all ages.

Moving on to the detailed proposals – my top ten headline thoughts are:

1. A proposed duty on NHS commissioners to focus on people’s well-being, mirroring section 1 of the Care Act, is obviously welcome. It’s clear though that such a general duty will not create individual rights to support for a person to live in their community as they choose.
2. The proposal to have regard to a specific series of factors – keeping people in their community, links with family and friends, opportunities to participate in work, education, training or recreation and the least restrictive setting – are also welcome and come from the first draft of #LBBill. But what many people have said in response to the first draft of the Bill is that these principles don’t go far enough and what we need is enforceable legal rights to choice and community inclusion, mirroring Article 19 of the UN Convention on the Rights of Persons with Disabilities.
3. Ensuring sufficient community provision is a central idea of #LBBill and it is good to see this in the consultation. However I am concerned that it is proposed to limit this duty to ‘people with learning disability or autism most at risk of going into hospital’ (p23). In my view there has to be a joined up duty on the NHS and local authorities to provide the community support that all disabled people need. Singling out particular sub-groups of disabled people seems to me both wrong in principle and completely impractical.
4. The approval principle in clause 5 of #LBBill is reflected in the proposal that consent should be required before a person is admitted to an inpatient setting (p28). However this is restricted to people who have capacity to make the decision. In cases where a person lacks capacity to decide whether to be admitted the proposal seems to be that best interests decisions will simply continue to be made by the Local Authority or NHS body unless the question is referred to the Court.
5. The additional safeguard proposed for what would seem likely to be the majority of cases where a person is admitted to an inpatient setting is a ‘gateway process’ where ‘statutory bodies have to demonstrate to another expert group (ideally which entails family involvement where appropriate) that it is necessary and appropriate for an inpatient admission or certain comparable living arrangements to be made before they are made’ (pp27-28). This seems to me nowhere near enough – note in particular that families may be involved in this process, but there is no reference to disabled people in this ‘expert group’. This proposal needs to be significantly toughened up through the consultation process if it is to make any difference. I’d suggest questions 12-14 in the consultation therefore need a particularly strong and detailed response.
6. The proposed new right to request a transfer from an inpatient setting (and it seems generally have that request followed) is welcome, but again is limited only to those who have capacity to make this decision.
7. Given this focus on capacity in the proposals, the absence of any suggestion that the Mental Capacity Act 2005 should be amended is particularly disappointing. None of the ongoing work listed at para 2.35, p33 of the consultation is looking at whether the MCA needs to be amended to give a greater focus on the person’s wishes and feelings and a stronger role in decisions for family and friends. These ideas are in clause 7 of #LBBill. A much more fundamental review of the MCA would be welcome, to look at how it could be made fully consistent with the growing focus worldwide on supported decision-making. If none of this is looked at then it seems that the full benefits of the consultation proposals will be reserved for the narrow group of people who have capacity to decide whether or not to be admitted to an inpatient setting.
8. The idea that only organisations who include self and family advocates in their governance should get contracts for the delivery of services is interesting and seems welcome – at least in sending a message about the involvement of disabled people and families in the way care is provided.
9. There is a helpful set of options about the way we should deal with the inclusion of autism and learning disability within the scope of the Mental Health Act 1983. After extensive debate the second draft of #LBBill will propose the third option – that learning disability and autism should be excluded from the civil sections of the MHA but not the criminal justice sections. We definitely need more debate about all the options here.
10. A new legal right to a personal health budget is a welcome idea – but it is not clear why this should need to be limited to one of two very narrow groups, as proposed at p52.

The Minister says in his foreword that ‘The ability to choose to live as independently as possible with support and to have access to community, to family and to opportunities like anyone else should be embedded in the design and practice of the system. Real exclusion is an essential not an optional extra’. The consultation contains lots of ideas that would help make this vision a reality – but inevitably it doesn’t go far enough. Please take the time to respond and help make sure the next government goes further. I’m looking forward to the discussion both on the consultation and the second draft of #LBBill, which we hope to publish before Easter when the Easy Read version is ready.