David Espinosa for Fine Acts

A human right to live in the place we call home?

How might a Human Rights Based Approach given focus to our agenda and help us to advance our goals?

By Neil Crowther, Convener, #SocialCareFuture

Social Care Future and human rights 

It’s no accident that Social Care Future’s vision echoes and amplifies international human rights law, or that it embodies human rights principles.  Our starting point is a belief in the inherent dignity and the equal and inalienable rights of everyone. Meanwhile, our work has been influenced and shaped by the same forces for change that brought about and shaped the UN Convention on the Rights of Persons with Disabilities: the disabled people’s independent living movement, by those who have worked to bring about a transition from institutionalisation to community-based living for all, and by those who have strived to reform public services to centre on each unique person and to place power in the hands of people to be the author of their own lives.

Where Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) calls on States to ensure that disabled people can choose where and with who they live, on an equal basis with others, our vision imagines a future where ‘we can all live in the place we call home, doing the things that matter to us.’  Where the CRPD requires action to ensure the full inclusion and participation of disabled people in the community, our vision imagines everyone living in ‘communities where we look out for each other.’  And where the CRPD requires States to take action to ensure ‘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’ our vision imagines social care as involving the weaving together of different resources, services, relationship and support, that people can draw on to live their lives as they want to, with meaning, purpose and a sense of belonging.

The alignment is clear, but how might a ‘human rights-based approach’ help give focus to the way we pursue the realisation of our vision and the system change required to make it a lived reality?

What is a ‘human rights-based approach’?

The Scottish Human Rights Commission advises that ‘Taking a human rights-based approach (HRBA) is about making sure that people’s rights are put at the very centre of policies and practices’. What this means in practice has been broken down into the ‘PANEL’ principles:

  • Participation– everyone is entitled to active participation in decision-making processes which affect the enjoyment of their rights.
  • Accountability– duty-bearers are held accountable for failing to fulfil their obligations towards rights-holders. There should be effective remedies in place when human rights breaches occur.
  • Non-discrimination and equality– all individuals are entitled to their rights without discrimination of any kind. All types of discrimination should be prohibited, prevented and eliminated.
  • Empowerment– everyone is entitled to claim and exercise their rights. Individuals and communities need to understand their rights and participate in the development of policies which affect their lives.
  • Legality– approaches should be in line with the legal rights set out in domestic and international laws.[1]
From principles to action

So how might these principles, and relevant human rights obligations, translate into an agenda for reform and what actions might be required to make these rights a lived reality?

Here are some initial thoughts and ideas:

Co-production & involvement: there has been an increased focus on and expectation of co-production and involvement (participation) in adult social care in recent years, but it can be both fragile and shallow, and sometimes absent regarding some of the most pivotal decisions made by local councils and other public bodies.  

Might co-production and involvement be put on a statutory footing (as was the case under the Disability Equality Duty between 2006-10)?  In the meantime, as part of a shift to ‘ethical commissioning’, government could promote deepening the involvement of those who draw on support in areas like strategic commissioning and market shaping.

Right to choice and control: various legal, policy and programmatic steps have been taken over the past decades to advance choice and control (empowerment). However, their fragility has been exposed as councils have implemented cuts and adopted spending control measures that have chipped away not only at the overall quantum of support that is available, but also at the preparedness of councils to step back and permit people to make their own decisions about how to use the resourced allocated to them to pursue their own wellbeing. At the extremes this has seen some people threatened with having to leave their own home in the community to move into a residential care home in order to continue to access support, a threat also faced by some drawing on NHS Continuing Health Care. While this is to a considerable extent a matter shaped by the inadequacy of council or NHS budgets, it is also something shaped by organisational culture, power and accountability.

Following its 2017 examination of the United Kingdom, the UN Committee on the Rights of Persons with Disabilities called on the UK to ‘Recognize the right to living independently and being included in the community as a subjective right, recognize the enforceability of all its elements, and adopt rights-based policies, regulations and guidelines to ensure implementation.’

A package of reform should include strengthening legal rights to choice and control (legality), both in relation to social care and health. The Equality and Human Rights Commission has drawn up options to these ends, including for example a legal presumption in favour of community-based living. The Commission also made recommendations following an Inquiry into strengthening people’s right to challenge local council decisions about social care (accountability). Legal reform alone will not be sufficient however, and investment is needed in scaffolding people’s ability to exercise choice and control, including through advice and information, supported decision-making, peer support and digital technology to help put more power in people’s hands.

At the level of social work practice, instituting a shift from ‘assessments’ to good conversations with people needing support focused on ‘what matters to people’ and which do not start from the basis of available funding will open up the ‘possibility space’ for choice and control.

De-congregation:  the UN Committee on the Rights of Persons with Disabilities has been clear that institutional models of care that deny people choice and control over where and with who they live and over day-to-day life are incompatible with the CRPD and calls on States to actively pursue deinstitutionalisation.

Despite the closure of most long-stay hospital provision and large-scale institutional care for working age adults, congregate living arrangements continue to dominate the options available to people for people with learning disabilities or autism who do not live as adults with family, from small group homes, through to residential care homes.  The incarceration, isolation and ill-treatment of people with learning disabilities and autism in so called ‘Assessment and Treatment Units’ and the failure of successive governments to address this is well documented.  While the majority of older people drawing on social care do so from their own homes in the community, the trend for residential care homes for older people – many of who have dementia – is to become ever larger in scale.

A human rights-based approach would anticipate focused action to de-congregate ‘care’, to prevent institutionalisation and to ensure people enjoy rights to choose where and with who to live on an equal basis with others. This could be pursued via law reform to create a presumption towards community-based living, via new standards on ethical commissioning, measures via the registration and regulation of care providers, action via planning and housing policy, a renewed commitment to separate (in law and practice) choice of housing from choice of support, and action to expand housing and support options across the life course (see below).

Growth and diversification of housing and support: to facilitate de-congregation and advance choice and control, action is required to grow and diversify community-based housing and support.  While there is innovation in the UK, the core of adult social care hasn’t fundamentally changed for decades, still centred on either congregate care arrangements or life and limb ‘homecare’ visits.

Government can play a decisive role in changing this, committing ringfenced resources to supporting innovation and transformation, reforming commissioning practices and regulations that stymy creativity, supporting research and evaluation.  Huge opportunities exist to harness new and emerging technology, to unlock community assets and to transfer more power and control into the hands of citizens. Facilitating community-based living for people with cause to draw on care or support should be a core objective of sustainable housing policy, with goals to increase the supply of accessible, adaptable and affordable homes.

Connection and inclusion: the freedom and opportunity to live independently and to be included in the community is not simply a matter of legal rights, or the available of services.  Of equal importance is the receptiveness of the wider community to the rights and inclusion of disabled people, opportunities for people to establish or maintain connection with others in their community, to contribute and be and feel part of associational life, and to develop, maintain and draw on informal networks of support.  This can require third party support, such as via approaches such as Local Area Coordination, community circles or Shared Lives, that work alongside people to foster connection aligned to people’s gifts, talents, interests and life goals.  It also links ‘social care’ to wider matters of social inclusion, from action to tackle the targeted harassment, hate crime or violence against disabled women that can maintain people’s exclusion from their communities, through to increasing people’s employment opportunities, inclusion in the education system and participation in sport and cultural life, all of which serve to create connections, contact and bonds between disabled and non-disabled people.

Progressive realisation: international human rights law doesn’t anticipate that those rights which involve a commitment of public resources are to be realised with immediate effect. However, the doctrine of ‘progressive realisation’ does anticipate – as the words suggest – improvement over time, with States required to take concrete, measurable steps using the ‘maximum available resources’ (accountability).

In its 2017 ‘concluding observations’ the UN disability rights committee called on the UK to ‘Set up a comprehensive plan, developed in close collaboration with organizations of persons with disabilities, aimed at the deinstitutionalization of persons with disabilities, and develop community-based independent living schemes through a holistic and cross-cutting approach, including education, childcare, transport, housing, employment and social security.’  It also called on the UK government to ‘Provide adequate, sufficient earmarked funding to local authorities and administrations, including the devolved governments, to be able to continuously allocate adequate resources allowing persons with disabilities to live independently and be included in the community and to exercise their right to choose their place of residence and where and with whom to live.’

There has not been a national plan, with progressive goals to advance disabled people’s right to independent living since the Independent Living Strategy in 2008, on the rights of people with learning disabilities since ‘Valuing People Now’ in 2009, or on the rights of people living with dementia since the National Dementia Strategy, also in 2009.  As a result, social care (and other public services) lack any ‘North Star’ or set of measures by which their contribution to advancing the wellbeing and life chances of people with reason to draw on support can be evaluated, or which can guide decisions about investment, policy or practice.   Most councils have, with regulatory cover, set eligibility criteria for social care at ‘critical or substantial’, meaning those whose needs are not judged to meet this threshold go without support, despite evidently requiring it, and little is invested in early action and prevention, meaning people’s health and wellbeing avoidably deteriorates.  Even those who do meet this criteria can find that councils determine that their assessed needs cannot be fully met, yet those unmet needs are not routinely recorded.  The resulting opacity and elasticity seems at odds with the requirement for accountability in a human rights-based approach.

A national plan, which re-situates adult social care within the broader enterprise of advancing the rights and opportunities of disabled people across the life course, and which imagines the contribution of social care to those goals improving over time, would be a crucial first step. This might be connected to the existing duties of local councils, the NHS and other public bodies to take steps to advance equality (the public sector equality duty, as well as the socioeconomic duty if the next government implements it).  Estimating and recording the extent of un or under-met ‘need’ should be part of this shift, as well as measuring improvements in both subjective and objective wellbeing.

There seems little doubt we face many more years of scarcity when it comes to public spending.  There must, however, be an increasing commitment of resources to supporting people to live independently and to be included in the community.  But the ’maximum available resources’ needn’t be seen as those only within the direct control of the State.  Arguably the national and local State is failing to harness the maximum available resources through unimaginative and inflexible commissioning practices, regulatory approaches, poorly designed processes and organisational cultures which fail to unlock informal resources and the power of people and communities to make change in their own lives – the ‘empowerment’ in the PANEL principles.  The role of the State is about creating an enabling environment for a rights-based approach to take root and thrive, not to ‘deliver’ rights on its own.

Reciprocal dignity

Of course, the ideas above focus on the rights of those of us who may have cause to draw on care or support.  Of equal importance are the rights of those who elect to work in the field of care or support, as well as those of us who support families and friends without pay.  Rooted in the principle of ‘reciprocal dignity’, the adoption of a human rights-based approach could help balance and progressively improve the rights of all involved.

What are your thoughts?

We hope you’ve found the ideas in this post interesting and they’ve sparked ideas of your own.  We’d love to hear them.

 

 

Image: David Espinosa for Fine Acts (https://fineacts.co/reimagining-human-rights)

 

 

 

 

 

[1] Source: European Network of National Human Rights Institutions https://ennhri.org/about-nhris/human-rights-based-approach/

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