This afternoon I finally sat down to read the Green Paper ‘No right ignored, no voice ignored’, in part prompted by Lucy Series’ tweet regarding its (mis) interpretation of independent living. And how right Lucy (as ever) is. This isn’t a minor issue – this whole paper is premised on the idea that people with learning disabilities and/or autism must enjoy the same rights as everyone else to live independently and to be included in the community. To get such a fundamental underlying principle so wrong does not bode well for the rest of the proposals.
Para 1.5 says:
‘During the passage of the Care Act through Parliament, the issues of independent living and inclusion in the community were carefully considered. However, the Care Act does not include an explicit duty to promote independent living. The term “independent living” is usually associated with Article 19 of the UN Convention on the Rights of Persons with Disability but the term is not defined in article 19.’
Actually I don’t think that in the UK the term is usually associated with Article 19. It has a much longer history in the UK and a definition was agreed by the previous government and included in the Prime Ministers Strategy Unit report on the life chances of disabled people – a definition which formed the basis the subsequent Independent Living Strategy in 2008. It also underpinned the Valuing People Programme. The definition was originally drafted by Gerry Zarb when at the Disability Rights Commission:
‘Independent living refers to all disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community. This does not necessarily mean disabled people ‘doing everything for themselves’, but it does mean that any practical assistance people need should be based on their own choices and aspirations.’
Nevertheless, if the UN Disability Convention is a touchstone here (and I welcome the fact that it is) then the Paper’s claim that ‘independent living is not defined in Article 19’ is somewhat challenged by Article 19 itself:
States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.’
The Green Paper goes onto note however how:
‘The Law Commission explicitly looked at whether “independent living” should be included in the Care Act and they concluded that what was important was that people’s wishes and feelings about where they lived were respected. It is also important to note that, as many self-advocates tell us, this is not just about where you live but about exercising choice and control over who comes into your home and who supports you.’*
Paragraph 1.6 of the Green Paper says:
‘As the Care Act is implemented from April 2015, we will monitor its impact and explore whether guidance needs to be made clearer, for example, to underline the specific intent of the legislation for local authorities to promote independent living where this is the person’s choice. Some people will want to choose other arrangements which are appropriate to meet their needs. For some people, this might include residential care. There is no policy to prevent or deny people choosing these arrangements, including for people with a learning disability and for those with mental health needs.’
Perhaps the authors of the Green Paper might like to blame the Law Commission at this point because here’s the thing: they got it colossally wrong. In fact it seems clear that when they read the bit of Article 19 that says very clearly that people ‘should not be obliged to live in a particular living arrangement’ they read it as ‘people should be obliged to live in a particular living arrangement.’ How else could the Law Commission have read Article 19 and concluded that: ‘We agree that a principle based on an assumption of home-based living would not be suitable to be included as a principle in the statute. The key issue should be the person’s wishes and feelings, and in effect this principle could skew choice in one particular direction’ ?
Not only is Article 19 (a) crystal clear on the point about respecting a person’s right to choose where and with who to live, Article 19 (b) then talks about the need for States to ensure the provision of ‘in-home, residential and community support’ (my emphasis). Advice to these ends was provided to government by an expert source: the Joint Parliamentary Committee on Human Rights. In its 2012 report on independent living it noted how: ‘This (the Law Commission’s) conclusion appears to be based on the assumption that independent living equates to “home-based living”. Article 19 makes clear that disabled people should “have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”, and that the option that should be made available to people should include “in-home, residential and other community support services”.’ Yet JCHR’s advice was and still is being ignored by the government.
What the Law Commission was perhaps distracted by and which may explain why it is reiterated again in the Green Paper is the emphasis in Article 19 on rights to full inclusion and participation in the community and to the need to ensure that whatever supports are available for people to choose – whether in-home, residential or community supports – ‘prevent isolation or segregation from the community.’ The Law Commission read this – entirely incorrectly – as limiting people’s choices only to receiving support in their own home. The Green Paper shares this misunderstanding when it says with respect to the possibility of issuing further guidance to local authorities ‘to promote independent living where this is the person’s choice. Some people will want to choose other arrangements which are appropriate to meet their needs. For some people, this might include residential care.’ (my emphasis)
In the avoidance of doubt and to make this as simple as possible: if a person is living in a place or with a person that they did not choose to live with then they are not enjoying independent living. If a person is isolated or segregated from the wider community by living arrangements that they did not choose, or which they were obliged to live in, then they are not living independently.
People do not ‘choose’ independent living, because independent living is choice.
Both the Law Commission and the authors of this Green Paper either fail to understand this or are providing wilfully misleading accounts of the meaning of independent living and of the UK’s obligations arising out of it having become party to the UNCRPD. If the former, then they should both correct their mistakes. If the latter then I would venture that it is an attempt not to respect ‘the equal right of all persons with disabilities to live in the community, with choices equal to others’ but rather to justify the very restricted choices faced by far too many people and which in practice will continue to isolate and segregate them from their families and the wider community. If this is the case, then all those who have been campaigning for a change in the law should recognise that this Green Paper is trying to hoodwink us into believing that it is genuinely committed to equal rights when it very clearly is not.
*While we’re on the Law Commission’s inability to understand the law, in making its case against including independent living as a statutory principle in the Care Act the Law Commission said: ‘this concept is covered adequately by Articles 8 and 19 of the United Nations Convention on the Rights of Persons with Disabilities.’
Firstly, it is difficult to see why the Commission saw fit to place emphasis on Article 8 – which concerns awareness raising and has little to say in particular about independent living. But more crucially, the Law Commission should know that the obligations undertaken by the UK – as a ‘dualist’ State when it comes to international treaty Conventions – is to implement the Convention through domestic policies and laws. The Convention does not enjoy statutory force in its own right. Article 4 of the Convention requires the UK government(s):
‘a) To adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the present Convention;
b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities;
c) To take into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes;
The fact that independent living is included in the Convention should therefore have led the Law Commission to conclude that it must be reflected adequately in the Care Act. In deciding against this they not only failed to understand its standing in UK law and the obligations of the government, they chose simply – and without I would argue any mandate to do so – to contest the very principles underlying an international law that both government and Parliament had agreed to be bound by.
It is sad that the scrutiny Committee on the Care Act, chaired by Paul Berstow MP (previously Care Minister) also chose to reject representations calling for a statutory principles on independent living, instead also heeding misleading advice of the Law Commission. Mr Berstow went on to chair the Commission on the Future of Residential Care. One of its members Clare Pelham, Chief Executive of Leonard Cheshire Foundation, major provider of residential care services to disabled adults of working age, recently wrote a piece in the Huffington Post arguing that ‘Instead of talking about someone ‘going into a care home’, we should talk about them moving to a new home because it’s the best choice for them…..wherever you choose to live, that’s your home. And that’s why you need your own front door. And for many, that’s also why they are happy to see it as a choice. A choice to sell their current house and buy a lease or take a tenancy in housing with care. A positive choice.’
As Lucy Series has deftly noted tonight, the interpretation of ‘independent living’ in the Green Paper is that defined by service providers as a service model, not by disabled people as freedom to lead the lives they choose. And it seems clear that the resistance to the idea of a statutory principle on independent living has come principally from those with a stake in the future prosperity of residential care, however one attempts to reframe it. Given the facts about the precise obligations arising out of of the UNCRPD, the only thing they should fear is people’s choices and aspirations.