Some distance to go: social care and person-led autonomy.

A few weeks ago, I gave a talk at a conference on social care and technology. Well in truth I recorded the talk because I was unable to attend in person because I had Covid. It was entitled ‘Moving from person-centred to person-led: How can technology play a part in building a more inclusive experience of care support?’

In light both of thinking about that talk and in reflecting on the pandemic experience of social care in Scotland, I want in this blog to broadly seek to map the journey to date in terms of personalisation and the distance we still have to travel to what I would argue should be the aim of all social care support, namely a person-led approach in practice which enables personal autonomy and which is seen in practice as much as in values, policy and political rhetoric.

The concept of ‘person-centredness’ is not new in fact it is in some sense, I would suggest, quite dated. It found its strength and real dynamic in the disability civil rights movements in the United States and Canada in the 1960s and 70s, but its origins go even further back. Faced with thousands of returning workers and the huge upheaval caused to commerce and manufacturing by the Second World War, many American industries in the 1950s began to think about their future direction of travel and how they could better glean the experience and skills of their workforce in charting that future. They developed a range of models which helped to put the worker in the driving seat of some of the largest US companies – at least in theory if not in practice. Importantly what developed were a set of models and approaches to planning and to enabling worker voice to be heard which were the most inclusive, creative and dynamic that had probably been seen in that environment.

From that industrial context, in the 1960s and 70s we began to see the use of some of these models, and their thorough re-adaptation by the inclusion movement as part of the disability civil rights campaign. Faced with the much campaigned for closure of long-stay institutions and asylums in the United States and Canada, advocates began to develop tools and models which would enable the people most involved by the closures, the people with learning disabilities, to be the centre of planning and re-design for their future lives. If inclusion was to mean anything it was not just to be the changing of an address and the staff who supported the individual, it was to be the re-orientation of a whole life as well as the manner of that care support. It was to be about putting the person at the centre of their lives.

The inclusion movement developed models such as PATH and MAP amongst others with an emphasis on literally putting the person at the centre of whole scale planning sessions, which were creative, dynamic, graphic, colourful and not dependent on pre-determined solutions and outcomes. The emphasis was on achieving what the person wanted, of dreaming big and charting the steps to implementation in collaborative and mutually agreed ways.

You can read a lot about the story of person-centred planning and personalisation both in the United States and in our own country where these philosophies became influential in social care delivery in the 1980s and 1990s. They deeply influenced the then emergent independent living movement and are at the root of our later social care legislation. I can commend Personalisation and Human Rights.

The radical new dynamic of inclusion and re-prioritisation which person centred planning tools evidenced can be best seen in a model like PATH and its associated principles, which in summary stated that:

  • The control is with the focus person and their advocates
  • Universal needs are as important as medical needs
  • The focus in on an individual’s gifts and aspirations, not individual needs and deficiencies
  • There is a future orientation
  • There is a commitment to address conflict openly and honestly
  • There is a commitment to reach a consensus for action
  • There is a willingness to come up with non – traditional solutions.
  • This is about inclusive process not pro forma
  • Such planning will not produce standardised and predictable outcomes.

Anyone involved in Scotland’s own closure of large-scale institutions over the last few decades will know well the benefit of such planning which put the person at the centre. It was a process that demanded much of professionals and the need for them to re-conceive their own role in the dynamic of commissioning, contracting, delivery and evaluation of care support.

It is therefore maybe not surprising that the emphasis on ‘personalisation’ and person-centred planning was at the heart of the developing social care legislation which resulted in the Social Care (Self-directed Support) (Scotland) Act 2013. It is there that we see an emphasis on principles of informed choice, participation, collaboration and personal control. It is there, in some of the most progressive and dynamic legislation of its type we have ever seen, that we had the potential of a real and radical control by the individual citizen. This control was not just around their planning of support, but the managing of that support, the budget for that support, and the evaluation of care support.

The potential of self-directed support was immense. The Independent Review of Adult Social Care (IRASC) and other equivalent reports and audits have shown why this legislation has in large part not been the success we all desired in its implementation. Feeley highlighted that person centred working was critical – but he also showed the way in which there were massive implementation gaps – vested interest, power dynamics imbalanced, retention of control, failure to grant true autonomy and give real choice.

Elsewhere, not least in health environments, the emphasis on person or patient centredness has become almost a given, even without the robustness of the principles which are evident in the term’s origin.

So where are we now in social care in Scotland? I have long argued that social care support must as a system and model embed and foster the autonomy, control and direction of the person being supported, rather than as it is now, overly directed and influenced by commissioner, contractor or provider.

But I think we have now reached a stage where we should recognise that the logical consequence of both policy and practice is that we need to move away from person-centredness to models and approaches which are truly and fully person-led. The individual person needs to be fully autonomous within the care and support relationship dynamic. They need to not only become the budget -holder (though it would be great if everyone even had that choice!) but they need to become the director and owner, not an actor and passive recipient of their lives; they need to truly have control, to really become the initiator, originator and creator of their care support.

Social care has become a transactional dynamic where the system has been elevated above the person, where the rhetoric and policy speak of person-centredness is given a nod, but the reality is the individual citizen has become wholly passive in too many contexts and has diminished autonomy.

I would suggest what we have witnessed in the pandemic in terms of a governmental, public health, clinical and social care response has further perpetuated this stripping away of autonomy and individualism from the person. We have made decisions and interventions which have addressed the need of the collective and group (as we used to in the worst examples of institutionalised care) and have failed with the challenging requirements of truly person-centred, person-led, autonomous intervention. In this sense I feel we have failed the individual’s distinctive, personal human rights of control, choice, autonomy, and self-decision.  Perhaps none more so than in our care home response. We have addressed the needs of a collective community on too many occasions at the cost of individual resident control, voice and choice.

I am not the only one who has been suggesting that there is not only a distinction between person-centred and person led support but that we need to move as a whole sector to truly putting the individual in the lead rather than just at the centre of receiving care and support. Jenni Mack in an excellent blog articulated this well by talking about her care support:

‘How is this different to person centred? Well, person centred would be reading care plans and seeing that Mr A used to have toast with marmalade every morning without fail prior to moving into your care and assuming that this will be his preference now. Person centred care would show that you showed an interest in him and provided (what you thought was) his preference. The one error in this was that you didn’t ASK him. Perhaps his late wife made this breakfast for him in the past and he ate it without a grumble so as not to hurt her feelings and he would actually love some cornflakes. Perhaps he DID love this breakfast but now his taste buds have changed and he finds the marmalade bitter. Perhaps he just fancies a change. So the moral of this is, communication. TALK to people, and NEVER make assumptions, even if you believe you know them well. Perhaps Mr A will continue to eat toast with marmalade for the rest of his days, but maybe just maybe he’ll branch out to new tastes and really enjoy them. We are never too old to try something new!’

Person-led care support is what, I would contend, not only the individual but the entire system requires. So let us stop talking about person-centred care and support and instead really put the individual in the lead, not least in the creation of a new National Social Care Service. Person-led care support denotes a transfer in the power relationship from the system to the individual, from the model and process to the citizen and person.

Indeed, you could argue some of the chuntering from the usual suspects against some of the IRASC ideas –is that there has been concern of a loss of control, autonomy, and power, including finance and political influence not  from the person in receipt of support but from other stakeholders.

The world has changed – people want control – and not just a passive say but full voice and control of health and care decisions – that’s after all what they have in all other areas. We need to catch up – social care is ready for that journey – it is entrepreneurial and dynamic.

The age of person-led care support should be replacing the chat about person-centredness. Autonomy is not easy for those providing support or those receiving care, but it is the necessary requirement of a social care system come of age.

The uncomfortableness of the autonomy and power dynamic is one we need to own and accept if we are really going to radically transform social care in Scotland. That place of discomfort is where we need to be if we are to enable autonomy, dignity and rights to be at the heart of the care support dynamic.

The American poet David Romtvedt writing of a very different context expresses both the discomfort of autonomy but also its treasure.


Now at three, my daughter answers every question

beginning with “Would you . . . ?” by saying, “No.”

And every gesture I make toward her she considers

an act of aggression. She is fierce in defense

of her integrity while reminding me many times

each day that “I love you, Dad.” And I understand.

I love her, too, and would stand aside as, like a flower,

she blooms. When I was ten, my father made me sit

outside in full view of the neighbors and play German polkas

on the piano accordion. It was hot, and both my body

and the large black musical instrument became slick

with sweat. I tried to play quietly, fantastically

hoping no one would hear, and my father screamed,

“Louder, play louder!” I felt I could not bear

my embarrassment and impotence, my father’s complete

power over me. Yet I did bear it. I bore it as I had to.

Such a small thing: to play the accordion for one’s father.

But it was not small. Those moments of childhood return,

and my stomach is a dense knot of hatred and shame.

My sad father, wanting happiness and ease, shaking

with exhaustion when he came home from his labor,

called me to bring the accordion outside and play

while he rested, and I bitterly did so, and he knew.

But he could not change it, could save neither

himself nor me. So you see how it is that I am elated

when my daughter says no again, her voice a single petal

that I must not try to catch as it tumbles to the ground.

Autonomy | By David Romtvedt | Issue 241 | The Sun Magazine

Donald Macaskill