The #socialcarefuture inquiry is officially underway! We have already had a few meetings to get to know each other and start to shape the inquiry. The real strength of this inquiry is that as a group designing and leading it, we all have lived experience of either ourselves or our loved ones using social care, and so we are uniquely placed to say what needs to change. We also have a fantastic team of supporters, providing assistance we may ask for or specialist knowledge on areas such as research.
We have started talking about what we would want to look at and how we are going to do it- It’s a big task! The #socialcarefuture online festival sessions (4-6th November) will feed into the inquiry and we will be hosting a session, so register to come along to hear more and be involved. We will also soon be inviting anyone with ideas on how we can make our vision a reality, to contribute- watch this space.
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 budgetsthat 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 teamsin 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.
For the past two years #socialcarefuture has been a growing movement of people with a shared commitment to bring about major positive change in what is currently called “social care.” It’s for those who want to take part in imagining, communicating and creating together a future where what we currently call social care makes a major contribution to everyone’s wellbeing and which, as a result, will enjoy high levels of public and political – support.
Those coming together via this growing movement include people with lived experience, families, professionals, managers, support providers, user-led organisations, politicians, academics, commissioners, community groups and others.
We have worked together in variety of ways to develop and pursue our shared vision:
Co-authoring a shared story of change and learn how to use it to inspire the wider public to support the future we seek
Underpinning this story with examples of the approaches that exemplify this future and working with others to grow and to spread them
Challenging and changing the present through action at all levels to close the gap between the positive rhetoric of policy and the reality on the ground
From a Vision to a Better Future
Building our plans for action with lived experience at the centre – Whose social care future is it anyway?
Lots of organisations and groups are holding reviews and doing planning about the future of social care. Sadly, these can effectively exclude people who use social care and often bring together only technical experts and those responsible for current forms of service and practice rather those keen to help build the future we want. Anna Severwright has blogged here about some of the reasons that changing this is vital. For this reason we are going to arrange our own positive enquiry to help us plan how to make our vision a reality and influence others.
A group of movement members with lived experience have agreed to form a core panel – people with a range of experience and ages and from across the movement. The group will be meeting and planning into the early Autumn and then the first stage of the enquiry will start running pre-Christmas. Lots of discussions with groups and organisations are going on about linking to and supporting the enquiry in a wide range of ways, hosting debates, sharing ideas, offering skills and insights. Beyond panel “hearings” there are several ways groups can be involved and make contributions. We would love to talk to you about getting your voice heard. There is an outline of our planned “appreciative enquiry” here.
Talking about a brighter social care future
Building on our previous work on “reframing” and with support from members we have brought together a diverse group from across the movement to work on the next stage. We are working with Equally Ours and Survation and will soon do research on how the public think about social care and which messages, how presented, can build support for our vision. We aim to get the first material out this autumn. See more here.
Glimpses of the Future: A Festival for Change
This will be an on-line festival starting in early November. It will offer an opportunity to:
Share the early findings from Whose Social Care is It Anyway? and Talking About a Brighter Social Care Future
Put on a series of sessions organised around our three core elements: vision, glimpses of the future, solution led challenge. These will share significant action members are taking, and debate key issues. People can link to opportunities for involvement in next steps or more detailed plans and action for change
Bring movement members and others together to raise spirits, support each other, inspire inform and entertain
Want to get involved in this action? Get in touch via email@example.com
Reset, Recover, Restart, Refresh, Renew or maybe you want to Run away! So many R words are being used for ‘life after Co-vid’. The reality is we are probably going to be living with Co-vid for a long while. Co-vid has shone a light on many issues and challenges in our society. But also shone some rays of hope.
Recently I have been asked to speak a few times about social care after Co-vid – so here is a blog summarising some of my thoughts:
We need brave, radical reform. Obviously, we need more and fairer funding. But we must make sure we are not just funding more of the same. Where going into a care home is the last resort, but there are often no realistic alternatives. Where families and disabled people talk about ‘the battle’ with the system and people with learning disabilities are too often still in institutions.
I want to start from a place that we ALL have the right to a good, ordinary life, regardless of age, health or learning disability, as described in this co-produced vision from Social Care Future:
“We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us.”
We all have gifts and potential and by being us make our communities better places to be, in our own ways. But some of us will need some form of social care to help make this vision a reality in our lives.
Co-vid has again highlighted the inequalities in our society, especially around our health. We all knew they were there, but for too long it has felt they were tolerated as the ‘status quo’. This must change. People from BAME backgrounds, living in poverty or who have a learning disability all have worse health outcomes. The causes are diverse, complicated and systemic, but social care and it’s foundation of social justice must play a role in challenging these causes and help to start to narrow the health and wellbeing gaps that have been widening.
Society needs to start to value social care and view it as an asset. Social care has been much more prominent during co-vid, unfortunately a lot of that due to the large numbers of tragic lives lost in care homes. Too often social care has been seen as a thing for others- the old or disabled, not something good for all of us in society. The language of ‘the vulnerable’ that has become common parlance during the pandemic, serves to further increase this dehumanising divide between those who need care and those who don’t, those seen as capable and useful to society and those not. But by having a strong social care sector it produces many jobs (crucial at a time of high unemployment), allows us as people to fully contribute to society, makes communities stronger, richer places to live, reduces isolation and improves people’s wellbeing. We need to make social care something that everyone wants to invest in and attractive for their older age.
Health and social care need to work better together in a joined-up way. This doesn’t mean they have to merge into one huge organisation and lose the skills and values specific to social care. But that the organisations, and crucially people within it, should be working together around my life. They should have a shared goal, of allowing me to live the way I want to, as well as possible. The culture of ‘that’s a different team’ or a different budget needs to end as it just causes delay and frustration. The fact that I can’t ask my PA to pick up a prescription as that’s a ‘health need’ is ridiculous and if I didn’t get my medication damaging to my health and wellbeing, but that’s just one example. This needs to include a person’s whole life- education, housing, benefits…. People don’t divide their lives into sections and yet that is how the system insists on interacting with people.
A positive to come from Co-vid has been community spirit, often in the form of the springing up of mutual aid groups or neighbourly WhatsApp groups. Communities showed that they were capable and effective in mounting a quick response. This reminds us that strong communities are vital to our wellbeing, often providing informal services, friendship or support that prevent or delay the need for more formal social care. However, the relationships between these more sporadic and flexible approaches and large organisations is often tricky, due to differing culture and language. It is essential that local authorities and other organisations encourage and support communities to thrive, but not try to control or fix them.
Another essential area for me is that people should have genuine choice and control over their lives, including their care and support. Family carers, often at breaking point, feel they have no option but to send their loved one into a care home as no viable alternative is offered. Younger adults, including myself, have limited care hours, so sometimes have to choose between having a shower or going to the supermarket. We can do better. In some areas, there are pockets of innovation and change, but too often these can’t fit the wider system so don’t survive or get adopted elsewhere. Things like direct payments, that were meant to offer genuine choice and freedom, get swallowed up into complex systems and restricted, making them not fit for purpose. The system needs to start working with us as partners, building positive relationships, built on trust and allowing flexibility, not on the current power model of scrutiny, threats and inflexible rules.
Ultimately for genuine reform to be successful, communities and citizens must be involved in the shaping and delivering of it. For too long power has been top down and hierarchical, but social care is about life and relationships and for these to flourish there needs to be a shift. Co-vid has massively changed the way we do things and we must grasp this opportunity to be big and bold in our aspirations for social care and for the lives we all want to live.