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?
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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: webjcli.org/article/view/365/464