by Neil Crowther, co-convener, #socialcarefuture
Over the past 25 years or so I’ve been involved at different points in striving to move forward law, policy, practice and discourse on older and disabled people’s human rights and in relation to reforming social care. While my starting point – disabled people’s right to independent living – fuses these two areas, it has often felt like straddling two trains running along not always parallel lines and being forced to leap onto one or the other to keep moving.
In truth, neither the mainstream human rights agenda, nor the mainstream of social care has paid nor continues to pay much attention to the right to independent living of disabled people (of all ages) particularly well. There exists a gulf between both and the approach set out in the United Nations Convention on the Rights of Persons with Disabilities.
To those ends, in preparing for a recent contribution to a Scottish Care-convened event, I was struck by some common fault-lines related to the narratives surrounding both human rights and social care.
In her work on the messaging of human rights advocates, the language expert Anat Shenker-Osorio noted how ‘human rights are too often made out to be the ends, or implied agents of change, not the means to human betterment.’ Similarly, in our work on the dominant narratives around social care, we’ve found it often spoken about as a place or destination (“people in social care”) rather than as a vehicle or instrument through which to pursue a life of meaning, purpose and connection.
A human rights based approach to social care should position it as a vehicle, whatever age or stage of life we are at. As the previous UN Independent Expert on the Enjoyment of all Human Rights by Older People Rosa Kornfeld-Matte said:
‘support (for older people) should be available as a means to expand opportunities and not as a method of maintenance.’
Anat also noted how human rights are often talked about as though applying to ‘atomistic individuals divorced from social connections.’ The same can probably be said of the way discourse has evolved around ‘personalised care’, embodying ideas of choice drawn from market economics.
This is despite the Covid-19 pandemic reminding us daily just how vital connection is to our wellbeing.
This not only about our human relationships, but equally the broader ‘scaffolding’ that ‘holds’ our identity as Hilde Lindeman has articulated:
‘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.”
Genuinely personalised care and support means honouring personhood & identity and doing that therefore requires recognition that who we are and what matters to us is anchored in our relationships with other people, in places and things – the ‘scaffolding of the self’. It demands respect for and action to maintain, repair or develop this ‘scaffolding.’
This is an idea echoed in the words of the UN Committee on the rights of persons with disabilities which describes ‘living independently’ as meaning choice and control over:
‘where we live and with whom, what we eat, whether we like to sleep in or go to bed late at night, be inside or outdoors, have a tablecloth and candles on the table, have pets or listen to music.’
And noting: ‘Such actions and decisions constitute who we are.’
A genuinely reformed approach to care and support would therefore shift from focusing on ‘homecare’ as the delivery of uniform life and limb personal care inside a person’s home, towards an approach that is concerned with caring about and making an investment in a person’s home, their relationships and all the things they may have reason to value in their life.
This is what #socialcarefuture’s vision speaks to:
But as with so much about human rights based approaches, they offer a sense of direction, and some principles on which to base future action, but lack a route map to get there. Here’s where we have to look beyond both human rights and the mainstream of social care practice. Hilary Cottam has captured a journey that many of us are on in her book ‘Radical Help:
Some of the innovations that have been developed and advanced by members of our network that exemplify these ideas include:
Personal budgets that give people control over money to fashion their own care and support in line with what matters to them, such as hiring a ‘personal assistant’, enabling the person ‘to build on their gifts, relationships and other assets, in order to engage meaningfully in the life of the community’,
Shared lives where people are matched with an approved carer and the carer shares their family and community life, and gives care and support to the person with care needs.
Community circles where a facilitator brings people together around someone who wants a little help to make a change in their life like getting out and about more, to starting a new hobby or restarting an old one, or creating opportunities to spend more time with friends or family.
Local area coordination where coordinators support people to build their own their vision for a good life, finding pragmatic solutions to any problems, and drawing on family and community resources, before considering commissioned or statutory services.
Wellbeing teams in which self managing teams work together with individuals, families and the wider community to ensure that people are safe and well, to support people to do more of what matters to them and to helping people to stay connected to others and their community
A particular challenge to realising this vision and moving these approaches from the margins to the mainstream is the way social care continues to be talked of as a ‘sector’ or ‘industry’ that provides a defined, transactional service (the ends, not the means). They will only become commonplace if care and support is recognised instead as an ecosystem that needs to be protected, nurtured and sustained. That in turn will demand a major shift in the commissioning practices of many councils and CCGs, which in turn demands that the role of the local state is also recast:
“Local authorities should reimagine their role – with the necessary funding from central government – as a “coral reef around which symbiotic agencies thrive”
Some councils have begun this journey, focused on how to grow great places for people to live throughout their lives, and Martin Routledge, co-convener of #socialcarefuture has captured some of the learning here.
In conclusion, words matter. They shape how we all think and feel. They define what we think is desirable or possible. They change our view of the world. While we are still in the process of researching the best ways to communicate our vision, three key ways to frame our vision and approach stand out:
- Care and support as a vehicle, not the destination
- Caring about and investing in the ‘scaffolding’ that holds our identities together and from which we build the life we wish to lead
- Investing in, protecting, growing and tending to the ‘ecosystem’ of care and support, not funding a ‘sector’.
As ever we welcome your thoughts and comments!
 United Nations Committee on the Rights of Persons with Disabilities (2017) General comment No. 5 (2017) on living independently and being included in the community.