The state of independent living – survey

There’s still time to complete this important survey on the state of independent living.

This short survey is being carried out by a group of organisations and activists that have been meeting for past two years to think about how to move the independent living agenda forwards. You can read more about us here

We want to know about the experiences of people who access support from their local councils and find out whether choice and control over that support is changing. To help us understand these issues we would be extremely grateful if you could spare a few moments to complete this short survey to share your own experiences.


No right ignored… just based on duff advice from the Law Commission

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:

Article 19 – Living independently and being included in the community

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.

Home is the scaffolding of the self

By Neil Crowther
‘It’s not only other people who hold us in our identities. Familiar places and things, beloved object, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us maintain our sense of self. And it is no accident that much of this kind of holding goes on in the place where our families are: at home. The home…is an extension and mirror of the living body in its everyday activity and is thus a materialization of identity…our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are.’
Quoted from Hilde Lindeman, ‘Holding One Another’ in Eva Feder Kittay & Licia Carlson (Eds.), Cognitive Disability and the Challenge to Moral Philosophy, (Wiley Blackwell 2010) at 163-164.
I came across the quote above in a report by Professor Gerard Quinn on de-institutionalisation in Europe (Get a Life).  It sums up in a nutshell the thinking I outlined in ‘Connections, Networks and Supported Decision Making – next steps for independent living‘ – hardly surprising as that post was itself very strongly influenced by Gerard’s work (he is on a years sabbatical to develop this thinking further).   I’d strongly strongly commend Chapter 2 of ‘Get a Life’ to people and in particular the sections on ‘honouring personhood and creating the conditions for human flourishing.’   Imagine if our policy making and practices were guided by this thinking? I believe it would be utterly transformative.  But it may demand the sort of ‘charismatic change’ Chris Hatton has written about to get there and certainly seems unlikely to materialise within existing paradigms of protectionism, safeguarding and welfare.  Can we imagine making this great leap forward?

The Care Act 2014: a missed opportunity to implement the UN Convention on the Rights of Persons with Disabilities?

By Tabitha Collingbourne

‘The Care Act 2014: a missed opportunity?’ considers the Care Act 2014 in relation to the UN Convention on the Rights of Persons with Disabilities (CRPD), particularly Article 19, the right to live independently and be included in the community.

Whilst it recognises that the Act’s overarching principles are broadly compatible with the Convention, and that its legislative framework marks a significant improvement on previous provisions, the paper argues that an opportunity to enact legislation which fully implements Article19 in England has been missed.

Key elements missing from the Act include, first and foremost, the failure to enact a statutory right to live independently and be included in the community.

As an ‘implementation’ Convention, the CRPD demands ‘paradigm shift’: a transformation in understanding of and approach to disability from ‘welfare’ to ‘rights’.  To this end, Article 19 blends together civil and political rights to autonomy and participation with socio-economic rights to the support services essential for their exercise.  The ‘well-being’ principle of the Care Act, by contrast, is not intended to create any individual or directly enforceable rights.  The paper argues that this outcome stems from successive UK governments’ reluctance to incorporate international economic, social and cultural rights standards into domestic law, choosing to view them instead as ‘welfare’ provision. To enact a free-standing, directly enforceable ‘right’ to independent living, and by analogy to the services required to support that right, would directly counter this long-held and strongly entrenched position.  As a result, there is no recognition in the Act of a right to live independently and be included in the community; ‘well-being’ remains a principle, not a ‘right’; and the socio-economic elements of Article 19 are not ‘rights’ but ‘welfare’.  The required ‘paradigm shift’ is not achieved, and the opportunity to enact a new, CRPD-compatible right to live independently and be included in the community is missed.

The invisibility of international human rights standards in this context also leads to further gaps in compliance.

When the UK ratified the Convention, it undertook to realise the economic, social and cultural rights contained there – including those under Article 19 – in line with international law obligations.  These obligations are found in the International Covenant on Economic, Social and Cultural Rights and its jurisprudence.  This holds that minimum levels of provision must be met immediately.  Beyond this minimum, the rights must be progressively realised to the maximum of available resources, and any deliberately retrogressive measures must be fully justified.  To ensure that these obligations are met, ‘the Covenant norms must be recognized in appropriate ways within the domestic legal order, appropriate means of redress, or remedies, must be available to any aggrieved individual or group, and appropriate means of ensuring governmental accountability must be put in place.’

The paper considers the Care Act 2014 in light of each of these requirements in turn.  It finds that whilst international law requires progressive realisation to the maximum of available resources, eligibility for social care in England has reduced over a number of years due to systemic underfunding. Despite international requirements for monitoring implementation, no national targets for social care provision exist, and independent monitoring of progress or retrogression is currently unavailable. Where international law requires access to appropriate means of redress, individuals aggrieved by a social care decision have recourse only to opaque administrative procedures which fail to address the substance of their claim. And where international law requires central government accountability, current policy devolves responsibility for social care funding decisions to local level, and relies on market forces to deliver outcomes.

The paper concludes that provision of the support services essential for the exercise of Article 19 remains vulnerable to retrogression, unmonitored and unenforceable.  Partial implementation of this key ‘enabling’ right in turn undermines realisation in practice of all Convention rights, and calls into question the UK’s undertaking under the CRPD ‘to ensure and promote the full realization of all human rights and fundamental freedoms for all disabled people.’


Collingbourne T., “The Care Act 2014: a missed opportunity?” (2014) 20(3) Web JCLI.

The full article is available (open access) at Web Journal of Current Legal Issues:


Connections, networks and supported decision making – next steps for independent living

By Neil Crowther


Next week I’m taking part in two meetings concerning the future of independent living.  The first is at the European Union Agency for Fundamental Rights (FRA) who are developing a ‘typology’ of institutions and also indicators to measure progress on the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities.  The second is the Housing and Support Alliance Conference in Manchester where I’ll sit on a panel debating next steps for independent living.  I’m still forming in my head what I want to say at each of these meetings and so am writing this post to invite discussion and debate.

Back to first principles

I think we urgently need to re-engage with first principles, and Article 19 of the UNCRPD – living independently and being included in the community – is a good place to start.  What are the principles that Article 19 embodies?

  • Liberty Article 14 CRPD deals with this specifically, but Article 19 ensures that it amounts to more than a ‘negative right.’ The recent statement by the CRPD Committee makes clear that persons must not be detained on grounds of their actual or perceived disability or on presumptions regarding a persons danger to themselves or to others, which requires the development of practical alternatives to institutionalisation
  • Self-determination, in the context of a persons living arrangements – the right to choose where and with who to live and to not be obliged to live in a particular living arrangement,  This suggests both legal rights and means of challenge/redress, mechanisms via which to exert choice and control such as personalisation/individual budgets, and support with decision making, building on Article 12 CRPD (equal recognition before the law) compliance with which is an essential foundation to compliance with Article 19.
  • Inclusion, defined in opposition to both segregation and isolation.  This is important in that it challenges the idea that a person may overcome isolation through involuntary placement with others in segregated/congregate living arrangements, but also because it challenges the idea that it is sufficient simply by dent of not living in segregated arrangements to enjoy inclusion.
  • Participation – it’s not enough to ‘be in the world’ – people need to actively take part, hence Article 19 underpins many of the other Articles in the Convention related to e.g. education, political participation, employment, leisure, as well as exerting control over one’s day to day life at home
  • Duties of progressive realisation – it might be assumed that Article 19 (b) embodies economic and social rights (the development of living and support options) indicating that the right to independent living is not of immediate application but that it should be realised by States over time, yet the CRPD Committee’s General Comment on Article 12 throws this into some degree of uncertainty – see my blog on the matter
  • Equality of access – Article 19 (b) embodies established human rights standards emanating from the International Bill of Rights, but CRPD inserts into them to the duty to provide reasonable accommodation plus Article 9 requires States to take steps to promote accessibility, including of information and communication.

Inclusion is not inclusion without self determination

So what might these principles mean in terms of current challenges, developments and next steps for independent living?

I think the most crucial issue – and one which on a number of fronts risks being neglected – is that inclusion is not inclusion without self-determination.  The following statement by self advocacy organisations in the USA (Keeping the Promise – Self-Advocates Defining the Meaning of Community) explains this point well:  

Institutions are defined as those that—

  • Include only people with disabilities.
  • Include more than three people who have not chosen to live together.
  • Do not permit people to lock their bedroom or bathroom doors.
  • Enforce regimented meal and sleep times.
  • Limit visitors, including who may visit and when they may do so.
  • Restrict when an individual may enter or exit the home.
  • Restrict people’s religious practices or beliefs.
  • Limit a person’s ability to select or remove support staff
  • Restrict people’s sexual preferences or activity
  • Require people to move if they want to make changes in the personnel providing their support or the nature of their support
  • Restrict access to the telephone or the Internet
  • Restrict access to broader community life and activities.

Community settings are defined in the report as having, at a minimum, the following characteristics:

  • If people share a living arrangement, they have chosen to do so and chosen the people they will live with.
  • Residents have lockable access to and egress from their own living area.
  • Access to the greater community is easily facilitated on the basis of the person’s preferences.
  • People have the right to hire and fire their own staff.
  • People may choose what, when, and where they eat, drink, and engage in social activities.
  • People have access to affordable, accessible transportation to participate in the broader community, including attendance at places of worship, volunteerism, social and civic engagement, and natural support networks.’

Hence, simply living outside the walls of an institution is not itself de-institutionalisation, and certainly not living independently and being included in the community.   People living with family, living in ‘supported living arrangements’ or in their own homes can lead lives that are completely governed by others or in which they lack the knowledge, information or confidence to take decisions.

The pioneers of independent living asserted that independence was not contingent on the physical capacity to carry out tasks, but to be in control of tasks performed on one’s behalf, replacing notions of ‘care’ with those of ‘personal assistance’.  But that movement accepted the idea that rationality was key to decision-making and in doing so arguably failed to ensure that the principle of independent living and some of its most significant developments such as direct payments benefited all disabled people equally, especially those with mental health problems, learning disabilities, autism or dementia.  So we must now assert that the right to make decisions is not contingent on mental capacity, but is a human right, and replace the notion of substitute decision making with that of supported decision making.  In doing so we need to replace the present deficit model approach to mental capacity with one which positively seeks to expand the scope for people to make decisions about their own lives.  There are some fantastic examples of how that might be done on this new website from Inclusion Europe.

Self-determination derives from genuine inclusion

Just as there can be no real inclusion without self-determination, so self-determination rests upon inclusion.   Autonomy is not about our isolation.  Our capacity to exert control over our own lives derives from our inter-connectedness, from the quality of our relationships, from our access to knowledge, information and experience.  Yet too often when we say the word inclusion we simply refer to a person being somewhere (with or without statutory support), when we should be focusing on a person belonging somewhere, on their networks, relationships and connections. It is these relationships and connections that provide the ‘scaffolding of the self’ – the ability we each have to forge an identity, to develop and exert our will and preferences and for those to be recognised and respected by others.  That – alongside more formal interventions – is what is meant by ‘supported decision making.’

So the challenge is to identify and harness routes to inclusion – to support people to make connections, develop and contribute to networks, to establish relationships.  This means looking beyond ‘social care’ – an idea always fundamentally at odds with independent living yet which continues to dominate thinking and practice – towards something amounting to the promotion of genuine social inclusion, whereby people are supported to participate in common domains of associational life – neighbourhoods, education, employment, political organisations, community organisations, religious institutions, sport, leisure and recreation and so on (about which equal of access is fundamental) – not only as ends, but as means to the end of both inclusion and self-authored lives.


So in summary, self-determination begets inclusion and inclusion begets self-determination.  The interrelated objectives of advancing supported decision making and building social connectedness should, in my view, guide any future approach to implementing the right to live independently and to be included in the community.  I have tried to capture this idea in diagrammatic form previously here.

At the same time we need to be very wary of anything professing to advance inclusion, or self-determination, that fails to be grounded in both principles.  And we also – critically and fundamentally – need a genuine commitment and action by all those advocating the rights of disabled people to practice what they preach and ensure that disabled people are fully involved in all debates and decisions regarding their own lives, not as an afterthought but from the get go.

Is Employment a Luxury?

By Rob Greig

I‘m old enough to remember the ‘right to work’ campaign. Whilst I always had some reservations about elements of its rhetoric, it felt important that all people should have the opportunity to work and, as a result, obtain income, a reasonable standard of living, contribute to society and build and develop relationships with co-workers.

NDTi’s recent research into the use of personal budgets[i] to support people into paid work drew some worrying conclusions about attitudes from parts of the social care system towards disabled people working.  Put simply, a common if not prevailing attitude found amongst social workers was that work/employment was not an important social care outcome.

There were a number of reasons for this, most notable were:

  • A continuing belief that people with more complex disabilities could not gain and sustain paid employment
  • Considering supporting people into work as only the responsibility of Job Centres,
  • A belief that in difficult financial times, social care funding should be targeted on providing basic personal care and safeguarding and that supporting people into paid work was an unjustifiable luxury.

The research described how these things led to gaining and retaining paid employment not being identified as an outcome in assessments. Consequently, no funding was allocated through RAS systems and support planning failed to draw in the necessary service and system supports.

The new Care Act[ii] contains an important change that should help to address this problem. The new Act states that a core responsibility of local authority social care functions is the promotion of wellbeing. The definition of wellbeing explicitly  includes work. This change should not be under-estimated. Gone is the outdated mentality of the 1948 National Assistance Act that saw the public duty as being to (essentially) provide residential and day care for disabled and older people, and in its place is a concept of citizenship and inclusion. The role of social care is now to support people to ‘get a life’ and, as part of that, get a job.

There are inherent challenges and tensions in this as it requires a cultural shift by services. So, let’s take the above three points from social workers as our starting place:

To deal with the simple one first – there is a wealth of evidence that even people with complex disabilities can, with the right support, gain and retain jobs. For example, NDTi’s recent research for the School for Social Care[iii] clearly showed this for people with learning disabilities. The challenge is about people’s belief systems and an understanding of the evidence about how to do it – not whether it is possible.

As for the respective roles of Job Centres and the social care/healthcare system, in an ideal world the employment sector would be fully inclusive of disabled people. However, principles and aspiration have to be grounded in reality and recognise the journey that society in taking towards full inclusion. Most Job Centres and disability employment advisors do not have the experience and skills to work with people with complex disabilities. Add to that, local authorities have resources that previously (and indeed currently) were spent on day centres and the like. In the new wellbeing world, these should clearly be diverted to functions like supporting people into paid work. A partnership between the social care and Job Centres is sensible in terms of both expertise and resource usage – with social care supporting (i) disabled people into work and on a journey towards long term support from DWP programmes, and (ii) DWP programmes on a journey to developing the competence for full inclusion of all disabled people.

So what about the money argument?  The most ridiculous thing about the current trend of social care and NHS funding for employment supports being cut, is that commissioning evidence based employment supports for disabled people saves money. This holds true whether from the perspective of social care on its own[iv] or the taxpayer as a whole[v]. If wider social return on investment is considered, the benefits are event greater[vi]. A view that social care should be focusing on basic care and safeguarding in these difficult financial times not only limits people’s lives, but also increases the cost to services and the taxpayer in the medium term.

Employment is not a luxury. The opportunity to work is something we should aspire to for everyone. It creates additional life chances for people and, when done properly, saves money. Across the country, individual social workers and some Council’s understand this and do good work – but they are the exceptions. As local authorities gear up to implement the Care Act, with new guidance being written on support planning, national training packages being developed, amended regulatory regimes put in place and so on – will access to paid work assume a central place in all of these and the social care system adopt a new mindset towards people being in paid work?

About the author

Rob Greig is Chief Executive of the National Development Team for Inclusion.  He was previously National Director of Learning Disabilities at the Department for Health and Vice-Chair of the ODI Independent Living External Advisory Group.





[iv] Beyer S (2008) An Evaluation of the Outcomes of Supported Employment in North

Lanarkshire (2007) Welsh Centre for Learning Disabilities, Cardiff University

[v] Department of Health (2011a) Financial Case for Supported Employment; Commissioning

High Quality Supported Employment Makes Financial Sense, Department of Health,


[vi] Coutts P, Durie S (2011) An Evaluation of Social Added Value for Real Jobs, the Action

Group, Edinburgh. Social Return on Investment (SROI) Analysis, the Scottish Government,

Employability and Tackling Poverty Division (August 2010, revised May 2011 for SROI