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.
For everyone, these are really important things in life. They make us who we are, give our lives meaning and make us happy. But for many, who need some support from social care, we have had to fight for support and often that support has meant losing some of these important things from our lives.
Whether you receive social care, care for a loved one, don’t qualify for support, work in social care or are someone who cares about this- your opinion and ideas are important and will help inform the findings of the inquiry.
We are offering many ways to tell us what you think, so hopefully there will be a way that works for you:
You can join a zoom session and tell Donna and Julie what you think. These will be on Friday 22nd Jan at 2.30pm, Thursday 28th Jan at 6pm and Saturday 30th Jan at 2.30pm. Please email firstname.lastname@example.org to get the zoom link.
You can phone us on 0121 474 5900 and speak to Wendy who will take down your answers for you.
We also ask that you share this with people that you know. You could hold a zoom session of people you work with or know and send us their answers or help someone who may find it difficult to respond to get their views heard. Through the diverse network of people who are part of SCF we are hoping to hear from a wide range of people, but we need your help with this.
We all want to live in the place we call home, be with the people and things that we love and do the things that matter to us, in communities where we all care about and support each other.
If we, or those close to us, have a health condition or disability during our lives, we might sometimes need some extra support to achieve this. This is the role of social care.
When designed well, social care helps to weave together the web of relationships and support that we all need to lead the lives we want to, with meaning, purpose and a sense of belonging.
Some places are already thinking and acting differently, finding imaginative ways to connect people and all of their local resources together to improve everyone’s lives. For example, facilitators who bring family, friends and neighbours together to support someone to do what matters to them, strengthening the relationships of everyone involved. Personal assistants, supporting people to live their lives as they wish to. And organisations that connect people with local opportunities to use their skills and talents, contributing to the community while improving their own wellbeing.
We believe this can and should be happening everywhere and for everyone, no matter what age or stage we’re at in our life.
To get here, those of us that share this vision need to come together, develop and then collaboratively begin to implement a long-term framework for change. We need the government to back it by starting to invest in all of our futures now. And we need more councils to be open to and supportive of growing these new and more effective ways of doing things, alongside their local communities.
What might we mean by a long-term framework to transform social care?
The framework we’ve begun to imagine would be unashamedly ambitious, purposive and expansive. It will bravely dismiss the emphasis on ‘containment’ that infects so much of the debate about social care and take the direction communications expert Anat Shenker-Osorio advises which is to say‘we deserve and can have nice things’. It won’t get lost in a debate about ‘how to fund social care’ but will be about ‘how to invest in all of our futures’.
It would take the 9 wellbeing principles from the Care Act as ‘wellbeing goals’, and develop measures for each. The framework could be about progressive achievement of those goals, with long, medium and short-term action and change objectives.
National government would be charged with incrementally increasing investment towards developing the framework, starting with an immediate injection of significant funding to stabilise social care as is. It would also be tasked with addressing legal or regulatory hurdles (including a targeted drive to reduce red-tape) and to support the improvement of data collection especially using new technologies. In common with a broader shift, it would also be asked to help cultivate the idea of the ‘collaborative society‘ inviting individuals, communities, the local State, the voluntary sector and business to see themselves as having roles to play and to ensure policies supported rather than got in the way of this.
At an early stage we would ask government to contribute towards a significant endowment to support the development and proliferation of innovative practices, perhaps match-funded by the National Lottery Community Fund (in the model of Power to Change). In particular, we would encourage a major investment in the proliferation of ‘connectors’ and ‘platforms’ modelled on ideas such as Local Area Coordination, Circles, Shared Lives and Disabled People’s User Led Organisations.
We would strive to establish targeted innovation accelerators to develop and model viable, sustainable housing and support alternatives to large scale congregate care facilities for those with the fewest current options, including people living with dementia and those with autism and/or learning disabilities.
We would work with the Local Government Association, ADASS & others to begin to transform (or replace) ‘commissioning’ with a shift towards asset based community development. This would place the strength & durability of places centre stage when thinking about the future of ‘social care’, including with an accent on ‘prevention’. This would be the point of intersection with the NHS, aligning with the NHS 10 year-plan and its focus on addressing the social determinants of health and on investing in the opportunities that will make social prescribing and self-managed care a reality.
We would reset the debate about ‘choice and control’, starting not with the mechanisms but with the principle. Rather than positioning direct payments as offering ‘most’ choice and control we could focus on optimising choice and control for everyone no matter how they access support. We might focus in particular on inspiring people, building confidence, supporting people to see what their options are. For those using direct payments or other ways to direct commission support the focus will be on reducing bureaucracy and the burdens of monitoring while optimising flexibility, including and creating other models for people to pool their money. In particular, we could focus on developing ‘choice and control architecture’ i.e. support with exercising choice and control, on and offline.
We would think beyond and reset the ‘Resource Allocation System (RAS)’ to tip the scales again against deficit-based eligibility, assessment and budget-setting towards so called ‘strength based’ approaches. We would challenge the terminology of ‘packages’ of support, to include ‘injections’ of support, boldly saying that not all support should be permanent, but some of it exists on to help people achieve particular goals or get past hurdles in life, beyond which we can hopefully reconnect, draw on supports in our community, find work and so on.
As with ‘Green Investment’ and the recognition that meeting the challenge of adapting to climate change is an opportunity to grow the economy and create new jobs, we would talk about the new job opportunities & opportunities for local economic development flowing from our plan as we adapt to demographic change. We will work with economists to model and evidence this.
These are just a few ideas to get us thinking and talking. The #socialcarefuture inquiry will be building on some of these ideas. In the meantime though, all thoughts are welcome!
Social Care Future is working to put a vision at the heart of campaigning for social care reform. Without this, any amount of funding would fail to achieve the shifts that people need to see. We also know though that resources are required to enable this vision and that right now short term funding is needed to stabilise a terrible resource situation impacting badly on many people. For this reason we agreed to come together with a number of other organisations and groups (accepting of course that these are just some of the groups who need to be heard) to make a case to the Treasuries Comprehensive Spending Review. You can see that case in this letter. It starts from our vision and asks for urgency in bringing forward reform based upon it. Immediately it asks for stabilisation funding and early investment in change – a down payment that could immediately support action that could build towards our vision:
Priorities for the Comprehensive Spending Review
Social Care – A New Vision
Social care reform must be underpinned by a vision. There is an opportunity to transform social care so that it is sustainable, a contributor to national economic recovery and plays a key role in ensuring that all people with care & support needs are fully included in their communities. As Social Care Future put it,
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
This vision cannot be achieved by social care or even wider public services alone. Public service resources need to be targeted to support and supplement the efforts and activities of citizens, community groups, voluntary organisations and local businesses. Social care leaders and local support providers, working alongside other council services and the NHS, can shift their practices to enable a much-increased level of preventative activity, freeing up resources for personalised support to local people requiring long term care.
Policy on social care, including funding reform, should be guided by and tested against this vision – with a single shared ambition across health and social care which puts people’s expectations for their lives at the centre. This can be measured using TLAP’s Making It Real framework. https://www.thinklocalactpersonal.org.uk/makingitreal/
The Strategic Partners have agreed three key areas of priority for social care that the Comprehensive Spending Review should support:
Urgently bringing forward investment and reform proposals needed to ensure the sustainable long-term future of social care
Funding for short-term stabilisation
Investment in the short term to speed the process of change
The government should bring forward proposals for longer-term investment and reform as an immediate priority to create a simpler, fairer system. However, any additional funding that is made available to social care, should not simply be used for ‘more of the same’ and the pre-COVID-19 status quo. It should be targeted on action to shift towards the above vision with clear expectations and levers that drive system transformation in care and support towards a more asset-based and preventative model of care
As a first step, the government must urgently address short-term funding challenges, which have been worsened by Covid, to prevent further deterioration in the access to and quality of care. An immediate injection of funding is needed to enable short term stability and avoid serious risks to support during the next phase of the pandemic. Work by our organisations and others has identified the most serious challenges to support which will require funding during the pandemic.
Early investment in change
We have identified the following key priorities for short term investment which can speed the shift towards the vision of a social care that is both sustainable and fit for the modern age.
A targeted fund enabling councils and their partners to make a rapid shift towards prevention that current financial constraints will not allow to happen without further investment funding. It is important that councils have the resources to support the prevention assumptions of the NHS Plan otherwise that ambition will not succeed and healthcare needs will also grow faster than necessary. In advance of the bedding in of long-term reform this fund would allow all councils to make progress towards use of the best, evidence-based approaches to start to reduce demand for and unwanted dependency upon formal services. This includes short term interventions when people first look for support and broader demand reduction in long term care.
The Government should commit to and fund a new deal for the care workforce, including personal assistants and other non-traditional workforce roles. This would develop clear career progression, better recognise and value staff, invest in their training and support, professionalisation and registration where this is appropriate. This would mean that we were able to recruit and keep high quality, skilled social care staff with the right values. Early investment is also required for the expansion of the workforce in roles which enable prevention, support the growth of innovative models of support and to develop and recruit a workforce that reflects and understand the needs of communities being served. This is particularly important in the context of the inequalities and discrimination experienced by black, Asian and minority ethnic people and their communities (see below).
Funding support for action on inequalities. The disproportionate impact of Covid-19 on some communities has exposed long endured patterns of inequality and discrimination. The need to address and help tackle ingrained inequalities and challenge discrimination is a given for all concerned with responsibility for adult social care services. The principles of social justice have always underpinned both social work and social care and it is vital that targeted and specific action is funded to address inequalities and poor outcomes for those people at greater risk. This funding would be linked to and support necessary DHSC and MHCLG action to support and ensure compliance with Section 1 of the Equality Act by public authorities. Funding along with specific advice and guidance could support local authorities to take action in line with the public sector equality duty of the Equalities Act 2010 to evidence and address the inequality of outcomes. Some funding would be directed to identifying exemplars that are improving equality of outcomes for people requiring care and support from BAME communities, so that the spread of effective approaches is accelerated. This should be taken forward within council’s existing formal responsibilities. This action should align with NHS action, and minimum expectations for action.
Whilst innovation and technology are making inroads into the way care is delivered, it is generally accepted that social care has been slow to capitalise on the potential of digital technology. We have the opportunity to invest in the rapid adoption of proven technologies which can enhance outcomes, such as artificial intelligence, assistive technology, predictive analytics and apps. An innovation fund would support councils and support providers to make best use of technology. It would also support bringing evidence based but currently marginalised positive models of care and support into more mainstream use. This fund could also be used to develop and rapidly test solutions to particularly challenging care problems.
Transformation and improvement support to councils and support providers: Change happens locally but local partners need technical and practical support to learn about best practice, innovate and embed better approaches. Resources are required to ensure a new funded transformation and improvement framework for adult social care can be delivered, linked to strong independent means of assessing how well local systems work together and metrics which incentivise this. Improvement should include a complete review of how care markets work, with a much stronger emphasis on the contribution providers make to the lives of the people they support and their contribution to the communities in which they operate and to wider society. Practice change needs to be thoroughly evaluated to provide evidence of what works to incentivise change.
Anna Severwright – Social Care Future
Caroline Speirs – TLAP
Clenton Farquharson – TLAP
James Bullion – ADASS
Kathy Roberts – AMHP for the Care Providers Alliance
Kathryn Smith – Social Care Institute for Excellence
Martin Green – Care England for the Care Providers Alliance
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.
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.