by Neil Crowther

Across all of the public audience focus groups we’ve recently run with Survation on how to craft our messages to win support for #socialcarefuture’s vision and approach we’ve seen people’s thinking align with Maslow’s hierarchy of needs.  When people think about social care they distinguish the ‘lower order’ physiological and safety needs from ‘higher order’ needs associated with love and belonging, self-esteem and self-actualisation.  They also see these needs as sequential.  Only once primary needs are satisfied do they imagine we can afford to turn our attention to meaning, purpose, control and connection.  Moreover, they believe that at present it is only realistic to expect social care to operate at the lower order levels of the hierarchy. It strikes me that this same thought process lies behind the arguments of those calling for ‘free personal care’ as a ‘building block’. 

This understanding presents a key challenge for #socialcarefuture in winning support for our vision and approach and so our framing has to be capable of navigating it and shifting thinking.

What I believe we must avoid doing is reinforcing Maslow’s sequential hierarchy in the way we talk about our approach.  A clue to how we might do this comes from the indirect impact of COVID-19 on the health and wellbeing people who draw upon care and support.   As Adelina Comas- Herrera et al point out:

“There is concern and, increasingly, international evidence that some of the measures taken to reduce the risk of COVID-19 infections in care homes, such as closing care homes to visitors (including family members), reduction in social interactions and activities and needing to isolate, have had negative impacts on the wellbeing and mental health of people living in care homes”

I don’t believe these effects are limited to people residing in care homes.  I know from my own family’s experience that my dad’s health and wellbeing deteriorated rapidly under lockdown, not because his physiological needs were not being met, but because the rhythm of his life was disrupted, connections depleted and his scope for autonomy was diminished.  That is to say, it was the failure to achieve higher order needs around belonging, self-esteem and self-actualisation that attacked the foundations.  I don’t think our story is unique if I was to say that it felt as though he had just lost the will to live.  In a matter of weeks he went from being confused but largely contented, to agitated, uncooperative, refusing to take medication or eat and drink.   A week isolated and confined in hospital saw him lose the ability to walk or talk.  A fortnight later he died.

Megan Lewis’s lovely story shows this same process in reverse. It was only though establishing belonging and self esteem that Megan’s mental ill health began to heal and she was able to eventually establish a life and more stable health living in her own home:

But even if we start at the bottom of the pyramid, what, when and how we eat, go to bed, get dressed, wash ourselves are all deeply personal and unique.  Who sees us or supports us in these private and intimate moments is a matter that gets to heart of personal dignity and autonomy.  Self-direction too often gets attached to the ‘higher order’ needs, but it is among these supposedly ‘low level’ needs that being in control can matter most of all to us.  My dad was deeply resistant to being supported to do these things, especially by professional care workers coming into his home. Conversely, note the emphasis placed in the Shared Lives model of people ‘choosing one another’, or that which disabled people place on hiring personal assistants based not on their professional qualifications but their values and character. Self-direction matters at every level.

In the past we’ve sometimes said the difference between what we advocate and what social care most often does is between having a life and just being kept alive.  But this perhaps reaffirms the hierarchy, creating space to suggest that life and limb care is satisfying those lower order needs and we are building on top, rendering meaning, purpose, control and connection unaffordable ‘nice to haves’. 

We need to flip the narrative, showing how our focus on ‘having a life’ is the best way to ensure people are safe, well and ultimately alive. The impact of COVID-19 restrictions have brought into sharp relief what happens when this is neglected. At the same time we are sat upon a treasure trove of stories, like Meg’s, that show the dramatic improvement in people’s physical and mental wellbeing when we put meaning, purpose, connection and control first.

By Tim Cooper, United Response

Last week we celebrated Social Care Future’s online festival Towards a Brighter Future; taking part in three days of presenting, discussing and sharing new ideas and collective goals for care. As a network with shared goals for positive change in what is currently called “social care” #socialcarefuture is leading the way in creating a vision for people to support and for future reform to aspire to.

Not for profit care providers shared stories of innovative work they are doing in local communities based on a special ethos we share. This belief is that providers should not only deliver good care but go ‘above and beyond’, transforming and improving lives for people we support. We do this by campaigning, influencing and above all bringing people together as ‘inclusive and aspirational’ communities to generate ideas and engage allies.

Macintyre presented the Our Voices Platform how people inspired and instigated positive change in the face of Covid19 to keep communities coming together even in the face of job losses and forced isolation during lockdown. We have thrived, provided solutions and sought opportunities to learn.

Certitude demonstrated different ways of setting up workshops, creating art and perhaps most fabulously bringing people together with ‘laughter yoga’, not only in traditional day centres but with groups in leisure centres and libraries to bring people from different walks of life together. There were some fantastic examples of providers finding new funding for laptops and tablets, rising to the challenge of Covid-19 to digitally link up people during the pandemic.

Camphill Village Trust showed new models to build skills for support workers around the concept that ‘Every Day Matters’ for people we support. It was fantastic to hear how staff are trained that listening, understanding, asking the right questions, explaining facts tactfully, extenuating the positive and focusing on the future can make such a difference not only for care but to transform confidence and improve lives.

Most importantly we heard passionate, articulate and powerful voices of people we support setting out their ideas for their future; that they should not be seen as disabled nor as independent adults be treated like children. The ethos that they are at the very centre of decision making on the best care for them was one of the loudest messages to come out of the festival.

Another clear theme from the festival was the need to rise to the challenge of how our shared vision for positive change can be articulated to the wider public. How to engage people who perhaps have no direct experience of social care with the opportunity to join our cause, contribute and share ideas, and build support for inclusive services to benefit everyone in the local community. We heard from expert campaigners Kat Sladden and Paul De Gregorio, who have empowered other grassroots organisations such as Grenfell United to grow campaigns that bring about real change. There was enthusiasm for the aspiration for #socialcarefuture to transition from a network with shared goals to a national movement for change.

It strikes me that this issue of growing a movement for national support of positive change care comes at a particularly relevant time. This month marks the 25th Anniversary of the Disability Discrimination Act, which outlawed unjustifiable disability discrimination. There has been huge progress and better opportunities for disabled people since that time, but perhaps this change has not developed at the same pace, or been delivered as comprehensively for people with learning disabilities and Autism.

Growing the vision we share with #socialcarefuture by articulating positive messages to the wider public is a perfect way to mark this anniversary. Building new ways of delivering innovative and inclusive services for everyone brings us all together as people regardless of disability or any other label. At United Response we will continue to support this path towards a brighter future.

Our online festival last week was a great success, with hundreds of you sharing your experiences, expertise and ideas for the future. Like all good festivals is was impossible to get to everything you wanted to. We know others wanted to be there but had other commitments. Luckily then, we recorded it all so you can catch up on anything you missed.

Thank you to all of the people and organisations that gave their time voluntarily to organise and facilitate sessions at the festival. A very special thanks to Gaynor and Mark for keeping the show on the road so expertly.

This is dedicated to the memory of our friend and colleague John Popham, who sadly died at the end of September. John was a ‘social videographer & internet evangelist’ who filmed and brought our face to face meetings and festivals to wider audiences through live broadcast. As John’s family said when announcing his passing:

“Please remember him by continuing to be positive, use social media for good and remember to ask yourselves how can you make someone else’s life better this week.”

John Popham

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.

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.’

The characters in the film ‘Inside Out’ each representing an emotion look out onto the ‘core memories’ that form the identity of the lead character, Riley

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.’[1]

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:

From ‘Radical Help’ by Hilary Cottam

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!

[1]    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.