Adult Social Care Glossary, v 0.6

“Community is more than a simple matter of geography. It is about how people connect with each other, the power of relationships and reciprocity, whether based on common interests, friendship, or the giving and receiving of support. These networks of informal ties are what make up the many and diverse communities each of us benefit from.”

Paul Burstow [1]

Back in 1946, Sir William Beveridge – architect of the Welfare State – “voiced his concern that he had both missed and limited the power of the citizen and of communities… he was increasingly aware that communities rather than distant, cold and hierarchical institutions, are often much better at identifying needs and designing solutions. [But] Beveridge had designed people and their relationships out of the welfare state. He realised too late that he had made a mistake.” [2]

Despite Beveridge’s acknowledgment of the importance and power of communities, institutions continue to dominate our approach. Rather than recognising the strengths and opportunities in communities, too often neighbourhoods and networks are written off as part of the problem (think ‘sink estates’, ‘no go areas’, ‘hard to reach’ communities), and services and ‘settings’ remain our default solution.

Instead of ensuring people can participate and can draw on ‘community-based support’, we’ve created a system that isolates and removes people from communities in the name of ‘care’.

However, more and more of us are now accepting what Beveridge realised all those years ago. We know that if we’re going to ensure everyone can live the life they choose to lead, we have to dismantle our institutional approaches and focus instead on working in and alongside communities, sustaining human networks of support.

But this dismantling takes much more than closing large establishments. As Alex Fox observes, “throughout these changes and improvement programmes, and their ‘task and finish groups’, the asylum remains unseen: its assumptions, its relationships, its power dynamics and its abhorrence of love.” [3]

Paying attention to how we communicate about ‘community’ helps to shine a light on these ingrained attitudes. So, let’s take a look at the current narrative, explore what it exposes, and consider where we need to focus our attention if we’re really going to put communities at the heart of social care.

Institutions
“If you can’t get up at 3am and microwave yourself a burrito, you’re living in an institution.”

Open Future Learning [4]

If we’re going to shift away from the dominance of institutions, first we need to be clear about what we mean by the term.

The Equality and Human Rights Commission defines an institution as “residential accommodation where:

residents are isolated from the broader community
residents live together with people other than those with whom they have chosen to live
residents do not have control over their day-to-day lives and over decisions that affect them, or
the interests of the organisation itself tend to take precedence over the residents’ individualised needs or wishes.” [5]
While we generally associate institutions with ‘care settings’, the isolation and lack of choice and control mentioned in this definition can be just as much a feature of life for people ‘living in the community’.

“Institutions are made as much of thoughts, beliefs and organisational practices as of bricks and mortar.”

Colin Goble [6]

As Neil Crowther writes, “we tend to think of institutions and institutionalisation as about being in a place. But institutionalisation is really about the dismantling of the self, through the dismantling of its scaffolding: not respecting or upholding routines and rituals, familiar people and things, one’s own bed, the clothes one wears, the food one eats, the places one can go, the television one watches or the music one listens to. This may be more likely in congregate care facilities, but it can also happen outside of them where risk averse policy and practice, or life and limb care pays no attention to personhood, identity and autonomy.” [7]

‘The community’
‘Community’ is like a magic word in serviceland.

Toby Lowe suggests the term “has a strange power to it. It conveys a sense of togetherness and positivity. It speaks both of solidarity and homeliness.” But he observes, “you will, almost never, hear people say what they mean by “community”.” [8]

Dictionaries define ‘community’ as “the people living in one particular area or people who are considered as a unit because of their common interests, social group, or nationality”. “A group of people who are similar in some way.” A “sense of having something in common.” [9][10]

Community is about people who share something. Indeed, the word derives from the Latin for common. A common geography, history, experience, culture, characteristic, identity, interest, profession…

There are numerous wonderfully diverse and eclectic communities. And yet we talk about ‘the community’, not communities. Singular. Homogeneous.

And in the same way we think of institutions in terms of buildings, we refer to ‘the community’ in terms of a place.

There’s no sense of people or relationships.

Of the feeling of community.

Of being welcome.

Of belonging.

Accessing the community
In one of his many brilliant and powerful blog posts, Mark Neary writes “I wish they would drop this “accessing the community” stuff. Steven is the community. “Accessing” it means that he is on the outside of it, waiting to be given admittance. That reveals a strong attitude – “this is ours and you are not part of it unless we allow you to be””. [11]

A comment in response to Mark’s post reads, “my daughter doesn’t want to “access the community”. She likes going out, when she can choose where and when… She loves company, and chatting to people, but wants little to do with day centres or over-organised activities. The other night, she hid her shoes, because to her accessing the community sometimes means doing things that other people want her to do.”

The phrase ‘accessing the community’ shrieks difference.

We go out.

‘They’ access the community.

It suggests ‘the community’ is somewhere you go, not somewhere you’re already part of.

Somewhere you can ‘access’ as an ‘activity’ or an ‘outing’, depending on your schedule, when (and if) you’re ‘allowed’.

Somewhere you fit into. You’re fitted into.

Not somewhere you belong.

Living in the community
“I hope Nigel will be so embedded in his community that there will always be people who’ll look out for him, love him and care for him after I’m no longer here. That’s what every parent wants.”

Baroness Sheila Hollins’ son Nigel, who has a learning disability, “lives independently in a flat near his family with support from a personal assistant” and “people see Nigel in the shops, cafe or train station. He has a life in the community.” She stresses that “returning people from inpatient units to communities “will never work until people understand it’s not about a building and a staff team, or rotas and procedures, but about putting somebody like Nigel at the centre of the plans”. Professionals should understand that what people need to live their life is to belong [in communities].” [12]

How many older people and disabled people ‘living in the community’ are really living, with genuine choice and control over their lives?

How many people ‘living in the community’ are really known, needed, and included in communities, experiencing a feeling of belonging, not just fitting in?

Community living skills
College courses for young autistic people and people with a learning disability are designed to “equip [learners] with the essential skills for living which will enable them to remain within their local community” and “take part in community life.” Care providers offer “services that help people develop their capacity to live in the community” and “enable them to gain the skills for living in the community”. ‘Reablement teams’ aim to “work with people to help them acquire or regain the skills and confidence to live successfully in the community”. And the Care Act guidance mentions helping people to “develop or regain the skills of independent living and active involvement in their local community.” [13]

All this suggests, once again, that some people are not already seen as part of communities, and will only become part of ‘the community’ if they complete the course or accept the service (which “can be accessed via a referral from the service user’s care coordinator” and “requires a risk assessment and a health and social care needs assessment”) and gain the skills to be allowed in.

So much for inclusion.

So much for human rights.

Prevention
The Care Act guidance states that “local approaches to prevention should be built on the resources of the local community”. That assessments should seek to understand how people’s “needs may be prevented, reduced or delayed by others within the community, rather than by more formal services”, and help “a person with lower needs to access support in their local community.” [14]

Despite the guidance emphasising that “prevention should be seen as an ongoing consideration”, there’s often a strong emphasis on prevention being something that happens ‘before’ social care, when people have ‘low-level’ or ‘ineligible’ needs. The way we talk about ‘community’ is similar. Angela Catley notes “the sense that social care is something (tasks?) that happens when ‘community’ ‘prevention’ ‘resilience’ 🤢& strong gatekeeping has failed. Rather than the support people get to live a full life… in their community, using their strengths etc😟” [15] And Alex Fox observes that “while ideas for prevention and early intervention are based on the belief that the boundaries can be redrawn, not erased, they themselves rest on familiar assumptions about the divide between community-based citizens and the subjects of service land, rather than removing that divide.” [16]

If we are going to remove this divide, we need to tell a different story.

A story that places social care at the heart of communities, and communities at the heart of social care.

That recognises community not just in terms of place, but also as the relationships between people. As participation and inclusion.

That appreciates we all have much to give, and so much more to gain.

And that articulates the role of local authorities – as Fredric Seebohm envisaged back in 1968 – as “[reaching] far beyond the discovery and rescue of social casualties, [to] enable the greatest possible number of individuals to act reciprocally, giving and receiving service for the wellbeing of the community”. [17]

As Mark Harvey suggests, “you wouldn’t be surprised if you found that paragraph in the Care Act now”.

Fredric Seebohm’s recommendation is echoed by Social Care Future’s articulation of social care as helping to “weave the web of relationships and support in our local communities that we can draw on to live our lives in the way that we want to, whatever our age or stage in life.”

This vision “recognises people who draw on social care being both givers and receivers of support to and from their community. It is about people caring about and supporting one another, rather than invoking ideas of ‘vulnerable people’ being ‘cared for’.” [18]

So, let’s stop talking about ‘the community’ as if it’s a place for us to signpost people to ‘before social care’, train people to have the skills to enter, and ‘allow’ people to ‘access’ from the confines of serviceland. And instead let’s talk about communities where we look out for one another, and each play our part in creating communities where everyone belongs.

“We want to be part of our communities, helped where we need it to connect to people and things that give our lives meaning and purpose – relationships, friends, family, work, leisure – and to share our gifts and talents. Social care must help remove barriers and offer assistance beyond traditional services to support such an ordinary community life.”

Social Care Future [19]

[For references/footnotes please see original article]