Adult Social Care Glossary, v 0.6

Freedom from the control or influence of others.

“Adult Social Care aims to maximise people’s independence.”

“The purpose of social care is to enable people to live an independent life.”

In 2006 the United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognised the equal right of all disabled people to live independently and be included in the community, with choices equal to non-disabled people.

There’s no mention of ‘independent living’ in the Care Act 2014 though – a missed opportunity to explicitly incorporate the CRPD right into domestic law. And the associated statutory guidance dismisses the term as “relatively abstract”, suggesting the focus on wellbeing and the “outcomes that truly matter to people” is clearer.

Maybe this focus is clearer. But the guidance does state that “the concept of ‘independent living’ is a core part of the wellbeing principle” and that “supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act”. [1] As such, references to ‘independence’ feature prominently in statements about the purpose of adult social care.

But when we pay attention to the way we use the term, it’s obvious that we’re not all thinking or talking about the same thing.

In practice, independence is often understood in terms of the dictionary definition of “not relying on other people or needing help or money from anyone else”. As people “taking care of themselves”. [2] [3]

We “promote independence to build self-reliance and to minimise the need for high end care.” We “maximise the independence of individuals so that they are able to do more for themselves.” We “want you to stay well and independent for as long as possible, so our support isn’t needed.”

“When I say I want independence my social worker tells me she will end my social care package then I will have independence.”

Julie Sharp [4]

This narrative implies that drawing on support equates to loss of independence.

It’s far removed from the concept of independence equating to choice and control, where “independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.” [5]

As Michael Oliver explains, “in advancing the idea of independence, professionals and disabled people have not been talking about the same thing. Professionals tend to define independence in terms of self-care activities such as washing, dressing, toileting, cooking and eating without assistance. Disabled people however, define independence differently, seeing it as the ability to be in control of and make decisions about one’s life, rather than doing things alone or without help.” [6]

“Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, work in jobs that are in line with our education and abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves.”

Dr Adolf Ratzka [7]

Getting back to normal
The concept of independence as self-sufficiency is perhaps most obvious in relation to ‘reablement’. “The reablement approach supports people to do things for themselves.” “Reablement is a service designed to help you restore your independence and your confidence and ability to look after yourself. The aim is to help you to do as much as you can for yourself, rather than someone doing things for you.”

The dictionary definition of reablement is “the job or activity of helping people return to normal life again after a period of being ill or in hospital”. [8] (emphasis added)

And reablement is described on the NHS website as “temporary care to help you get back to normal and stay independent… a type of care that helps you relearn how to do daily activities, like cooking meals and washing… A team with a mix of people from the NHS and social services will help you do the things you need to do to stay independent. This might include getting dressed, preparing a meal, or getting up and down stairs. They might care for you at first, but will help you practise doing things on your own.” [9] (emphasis added)

Colin Goble writes that “from this perspective, which remains the dominant one in our society, disabled people are dependent because their bodies, senses or minds are somehow ‘defective’ and don’t allow them to function independently. In short, they are ‘not normal’, and a return to normality, or some approximation of it, becomes the goal of rehabilitation practice”. [10]

He observes how our “professional interventions” use “scales and tools” to measure people’s “performance against ‘normative’ standards”, and how we develop programmes to reduce the gap between where people are on the scale and what is considered ‘normal’.

As such, Jenny Morris writes – quoting Simon Brisenden – “disabled people are victims of an: “ideology of independence. It teaches us that unless we can do everything for ourselves we cannot take our place in society. We must be able to cook, wash, dress ourselves, make the bed, write, speak and so forth, before we can become proper people, before we are ‘independent’”. [11]

Reducing ‘care package’ costs
“Where progress to greater independence is achieved, we will look to reduce services accordingly.”

The Reclaiming our Futures Alliance of disabled people suggest that “the language of independent living has been appropriated by Government and public bodies to justify the cuts they are making… It is common practice for essential support to be removed from Disabled people through social care assessments under the justification of “helping” them to “improve their independence”. [12]

It’s hard to disagree when adult social care strategies mention ambitions to “increase service user independence to reduce the financial value of care packages”, “encourage independence [to] enable lower cost care packages” and maximise independence “to reduce the need for costly interventions” and “minimise costs to the taxpayer”.

The promotion of independence to ‘manage demand’, not to ensure wellbeing and the “outcomes that truly matter to people”.

Living independently ‘in your own home’
We generally imply that living in ‘your own home’ equates to independence, and that any support you draw on in ‘your own home’ will ‘allow you to remain independent’.

“Home care, or domiciliary care, is support provided in the person’s own home to allow them to stay independent for as long as possible.” “Small devices can detect and monitor your movements passively and can help you live independently in your own home.” “Supported living allows people with disabilities or mental health to maintain independence within the community.”

This equates independence with living ‘in the community’ as opposed to an institution, but not with people’s rights to liberty, autonomy, dignity, privacy, participation, and inclusion.

How many of the people supported to ‘live independently’ in their own home can control who comes through their front door, and when? Can eat what they feel like eating, and when they feel hungry? Can choose what time to go to bed and who shares their bed? Know who is monitoring their movements?

And, whether we interpret independence in terms of self-determination or self-reliance, too often ‘living independently’ equals secluded lives – a reality far removed from the Article 19 directive that disabled people should have access to the “assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” [13]

We may make sure people have ‘equipment to help with daily living’ or ‘four calls a day’ for ‘personal care needs’, but it’s unlikely life feels good if your only conversations are with Alexa or with a paid worker you’ve never seen before and may never see again. If the only time you’re touched or held involves ‘washing and dressing’ and ‘feeding’ and ‘moving and handling’.

It’s hard to realise or remember who you really are and why you really matter if you have no one in your life to affirm your identity and value, and nothing to do to give you any sense of meaning or purpose.

“When the first lockdown started and many were talking about how hard it was being stuck at home, not being able to do the things they enjoyed doing, or not being able to see friends and family, I remember thinking that it didn’t feel that different for me. Actually I felt more a part of society than normal, because everyone was experiencing a life more like mine, unable to lead the lives they wanted to lead.”

Anna Severwright [14]

For as long as possible
“Social care aims to help older and disabled people to stay as independent as possible for as long as possible.”

The “as long as possible” qualifier from the Care Act guidance is frequently repeated in references to the aims of social care.

This implies that at some point living in your own home will not be possible, and that a ‘placement’ in residential care is inevitable, regardless of whether it’s what you choose – a narrative far removed from the United Nations Convention on the Rights of Persons with Disabilities (CRPD) Article 19 requirement that disabled people “have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”. (United Nations, 2006)

“Once again, just to bang on about this one more time, this right is about choice, not a particular kind of accommodation or ‘independent living skills’ or living alone or without support. It’s about disabled people having the same choices as non-disabled people about where you live and who you live with, and having access to the services you need to enable you to live there and be included in the community. It’s a right that has at its core a desire to tackle institutionalisation and the segregation and isolation of disabled people.”

Lucy Series [15]

Given the varying interpretations and how harmful they can be, I believe we need to think carefully about how helpful the language of independence is in relation to the overall purpose of social care.

I’m absolutely not advocating that we abandon the principles of independent living articulated in Article 19. However, I think we’re more likely to make these principles a reality if we talk instead about people having equal choices, and control over any assistance they require. About participation and interdependence. About all of us living in the place we call home, with the people and things we love, in communities where we look out for one another, doing the things that matter to us.

We don’t need to talk about independence to ensure that the principles of autonomy and inclusion are at the heart of what we do. We just need to talk about people leading the lives they choose to lead – then work together to make that a reality for everyone.

References

[1] Care and support statutory guidance, Department of Health and Social Care, Updated 28 March 2024

[2] Independence, Collins Dictionary

[3] Independent, Collins Dictionary

[4] When I say I want independence… Julie Sharp, Twitter, 25 April 2024

[5] ‘Independence’, Jenny Morris, 22 September 2014

[6] The politics of disablement, Michael Oliver, Macmillan, 1990.

[7] Independent Living and Our Organizations: A Definition, Dr Adolf Ratzka, Independent Living Institute, May 1997

[8] Reablement, Cambridge Dictionary

[9] Care after illness or hospital discharge (reablement). NHS

[10] Dependence, independence and normality, Colin Goble, in Disabling barriers – enabling environments (pp. 41-46), John Swain et al, Sage, 2004.

[11] ‘Independence’, Jenny Morris, 22 September 2014

[12] Independent Living for the Future, Reclaiming our Futures Alliance, Inclusion London, June 2019

[13] Convention On The Rights Of Persons With Disabilities (CRPD), United Nations, 2006

[14] Whose social care is it anyway? From permanent lockdown to an equal life, Social Care Future. (2021)

[15] A stupid question about supported living, Lucy Series, The Small Places, 18 February 2015