It’s a privilege to be asked to contribute my views on how far we have come with inclusion and equality over the last 20 years to coincide with CMM’s 20th anniversary. It’s a hard ask to sum up two decades of a large and contested area, so these are my personal reflections, rather than a historical account or survey of the whole equalities landscape.
My focus is on adult social care, particularly the pursuit of personalisation. The shift towards meeting people’s needs on a whole person basis, seeing people in their social context, was reinforced in law with the Care Act, which included the duty to promote wellbeing. This should provide a strong platform to promote equalities and inclusion, particularly when adding the vital notion that people should have choice and control.
Progressive change
My overarching view is we have made some progress, but there is still a long way to go before we can say that we have a ‘fit for purpose’ approach to social care that serves the needs of everyone in an equal, equitable and inclusive way.
We need to do more to recognise the importance of intersectionality; to recognise the interplay between different aspects of people’s lives such as disability, race, and gender, rather than looking through a single lens. As a black disabled man with several long-term conditions and an unpaid carer to my mum, this is crucial to seeing me as a whole person. Intersectionality recognises that individuals may face multiple forms of discrimination and disadvantage based on their intersecting identities, whether that’s because of their gender, race or disability. It is essential to understand and address these intersecting dimensions of inequality to ensure that care and support is inclusive and responsive to the needs of all individuals.
It’s not only the Care Act where we have seen progress. The introduction of the Public Sector Equality Duty, created under the Equality Act 2010, placed a duty on public sector organisations to go beyond tackling unlawful discrimination, and instead to actively seek to ‘advance equality of opportunity’ and ‘foster good relations’ between people who share a protected characteristic and those who do not. This has been a force for good and lever for some progressive change.
Yet an unavoidable learning from the past 20 years is how legislation – – though important – – does not guarantee the intended outcomes are achieved. Duties require resources and people to put them into effect. We have seen that the Care Act has suffered from inconsistent implementation, not least because it has coincided with a prolonged period austerity. There is also a cultural aspect to this, where people running and working in social care have not always fully embraced personalisation, and too often have regarded it as a ‘nice to have’ compared with the real business of managing demand through efficient resource management. No matter how good the policy and law it is dependent on the right values, behaviours, and relationships which cannot simply be mandated. In relation to equalities and inclusion this is even more the case.
However, despite some notable exceptions, too many people are experiencing too little personalisation. This means that addressing discrimination and advancing equalities has also been held back. Issues are compounded by a complex system which is foggy to navigate, where rights and entitlements are not clear, often leaving people ill-informed, confused and fending for themselves. Imagine what it is like for those for whom English is not a first language or who may have limited or no access to the internet.
Consider how:
- Too many people with learning disability and/or autism are still spending too long in Assessment and Treatment Units leading restricted lives.
- Too many disabled people are not getting the personalised support they should enable them to lead contributing lives, including finding, and keeping employment, and are instead forced to rely on limited life and limb support, the charges for which are a big worry and burden.
- Older people often face limited choices with standard one size fits all services, where the predominant language is still too often of ‘buying beds’ and ‘purchasing hours.’
- Too much burden on unpaid/family carers and too many people waiting for an assessment, even to get onto the first rung of the ladder of accessing support.
- Too many people have needs that are assessed as being not severe enough and/or have too much money to qualify for help.
Where then should we expend further effort to gain most reward? For me, it is about making sure we are running with others in the right direction on the shortest route possible in pursuing the goal of equity and intersectionality throughout; these should be woven into all that is done to improve social care. Here are some further thoughts on how we can make fuller and faster progress over the next decade:
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A better more inclusive vision with a ‘Big conversation’
Reforming social care must be based on a better and more inclusive vision of what social care is and who it is for. If we start with the future we want to see, such as the Social Care Future vision, and work backwards from there to prioritise actions that will take us there, we stand a real chance at change.
The White Paper, People at the Heart of Care and now the Next Steps go some way towards this in articulating the importance of choice, control and independence, but we need a bigger and bolder vision like Social Care Future’s: ‘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’ to guide us towards genuinely transformative reform.
I’m not alone in thinking this. Think Local Act Personal’s own work, not least the landmark I and We Statements of Making it Real, has done much to help us see a better way to do things. These ideas have inspired recent reports on social care*. Whilst differing in their detail, all point to the need for us to think differently about the purpose of social care, to be more inclusive and universal rather than seeing it as a safety net for those deemed ‘vulnerable.’
https://www.adass.org.uk/media/9685/adass-time-to-act-april-2023.pdf
To raise the bar requires us to have a big conversation about the future of social care, not starting with how it is paid for, but what we expect it to achieve for people. This conversation needs to get closer to the well-known African proverb, ‘It takes a village to raise a child’ and move away from seeing social care as something largely for others and primarily to help the NHS with hospital discharges of older people. Social care is fundamentally a relationship thing – let’s start by understanding our individual and collective responsibility to each other and reach beyond the current limited view of social care.
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Co-producing a more inclusive future with people and communities
Making the right sort of progress means that in every area, and with all groups, we need to invest time and resources to build an infrastructure capable of sustaining strong, connected communities. There are already areas showing the way, so let’s build on their positive legacy and get more local authorities and other parts of the statutory sector developing a much greater understanding of community assets and needs, at the very local level. We need to start listening to, trusting in, and transferring real power to local people and neighbourhoods. Great examples of this working well are too often found at the margins or seen as an innovation, instead of accepted as the best way we get things done.
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Inclusive leadership, inspiring the workforce
Leadership at all levels – national and local – must have a key role to play in creating an inclusive culture. Leaders must be able to challenge themselves and their people to do better. We all have our blind spots, so we need to be self-conscious and intentional if we are to tackle the systemic and structural inequalities that still exist. This should include bringing staff together to talk about issues in challenging but safe spaces.
This is helped when leaders themselves reflect the diversity of the community they serve. There are now more women in social care management and leadership positions, and it is worth celebrating the fact we have a Black woman, Beverley Tarka, as this year’s ADASS President.
Change at the top must be mirrored by efforts to improve the conditions of the social care workforce at every level. We need to work extra hard to make sure that equity and equality are at the forefront of drives to improve quality, recruitment and retention. That’s why I back the implementation of initiatives like the Race Equality Workforce Standard.
We need to instil greater confidence and more competent practice across the whole care and support sector; confidence in working with diversity, grounded in human rights, and challenging policies, systems and processes which work against equity of access, experience and outcomes. If there is a waiting list for an assessment or a service, do you know the protected characteristics of those waiting? These things matter if we are serious about finding solutions that count.
Practitioners need a proper and evidenced grounding in human rights approaches to care and support, together with an understanding of the concept of independent living. This has got lost with practitioners spending too much time gate keeping access to resources.
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Commissioning different things, differently
Commissioning needs to transform if we are to shift from one-size-fits-all
services to those which are truly anchored in the lives of people and the places they live. There is a strong equalities dimension to this. During the pandemic, the disproportionate impact on people from Black, Asian and minority ethnic communities soon became clear and TLAP commissioned some specific work as a contribution to addressing this. The aim was to find examples of promising practice that demonstrated what good, personalised, community-based care and support looks like for people in ethnically diverse communities.
We found some notable examples of personalised care and support, although the term ‘personalisation’ was not often used by those clearly working in that way. But we also found that organisations in the study were often operating on the edge or outside of mainstream commissioning and decision making. There is much more that councils can and should do to engage with groups and organisations as part of developing a flourishing and diverse ecosystem of support. The opportunities to enrich learning for everyone if we do are considerable.
Commissioners also need to make sure mainstream services can provide the full range of needs and draw on the assets and strengths that exist in communities. Equality impact assessments must be more than a tick box exercise.
It is crucial social care procurement places a greater premium on social value and have fewer hoops and hurdles so smaller organisations that are often closer the ground and intricately connected to communities of place and/or interest, stand a better chance of being able to develop or extend their support.
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Data that supports intentional action
At one level it seems to me that we have an abundance of data, more than we know what to do with, whilst paradoxically we also have data deserts, which I know from my membership of the NHS Race and Health Observatory.
The question we should be asking is what data do we need to show us how we are doing in providing more personalised and joined-up care and support that enables people to lead good lives? This must include data which shines a light on fair access, experience, and outcomes, covering protected characteristics, both separately and combined.
We also need data that provides regular and reliable insights into the make-up of the workforce and ways of measuring progress towards creating a diverse and inclusive workforce with fair opportunity. This may be hard to achieve but it is the right thing to do.
But none of this is of much use unless the collection and analysis of data is coupled with a commitment to understand the story of what the data is telling us and use this to act for improvement. Social care must always be about more than beds or time and task. The data we collect needs to be used to tell the whole story.
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Levers with opportunity
Integrated Care Systems (ICSs) are required to ‘tackle inequalities in outcomes, experience, and access’ as one of their four purposes. ICSs should make good use of this mandate, fully involving local authorities and communities to set clear plans to address systemic and structural problems at all levels of system, place and neighbourhood.
Whilst you cannot regulate your way to equality and inclusion, the introduction of the new Care Quality Commission (CQC) assurance regime does provide some opportunity through the Single Assessment Framework to hold leaders and organisations to account across the system.
Final thoughts
We must avoid a sense of ‘learnt helplessness’ where the pursuit of equality, equity and inclusion is seen as too hard, or someone else’s responsibility. Everyone needs to play their part within whatever setting, organisation or institution they are located.
The investment will create a social care system which is based on trusting and reciprocal relationships where everyone belongs and no one is left behind. That’s a future all of us should be proudly and tenaciously working towards.