The forgotten story of social care

A County Councils Network and Newton Research Programme

The case for improving outcomes for working age and lifelong disabled adults A County Councils Network and Newton Research Programme Phase 1: The evidence base for change

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Contents

Partners

Foreword

01: Executive Summary

02: Introduction

03: Methodology

04: The case for better outcomes for working age and lifelong disabled adults

05: Drivers of cost of support

06: Increasing demand from transitions to adulthood for 18–25-year-olds 40

07: Understanding the working age and lifelong disabled adult population 50

08: Summary of analysis

09: The future for working age and lifelong disabled adults

Partners

10: Appendix 1: Cohort analysis

11: Glossary

Founded in 1997, the County Councils Network (CCN) is the voice of England’s counties. A cross-party organisation, we develop policy, commission research, and present evidence- based solutions nationally on behalf of the largest grouping of local authorities in England. In total, the 20 county councils and 17 unitary councils that make up the CCN represent 26 million residents, account for 39% of England’s gross value added production, and deliver high quality services that matter the most to local communities. Find out more by visiting countycouncilsnetwork.org.uk

We’re optimistic about the future for our public services. We partner with local government to deliver strategic improvement and innovation. We work across adult social care, children’s safeguarding and SEND, housing services and integrated health and social care – and the wider council and systems they operate within. Our work supports with the significant operational, financial and demand challenges faced today. We work with clients to innovate the fundamentals of service delivery, operating models, and systems to transform how public services engage with individuals. Find out more by visiting newtonimpact.com

12: References

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Foreword

disabled adults need to be as large a part of the agenda for Integrated Care Systems as for local authority cabinet meetings. The findings contained in this document are designed to start debate on how future reform of the social care system can properly address the needs of the diverse range of individuals up and down the country who rely on the support of these vital services to ‘live their best life’ and push the limits of their potential. The work represents only the start of a journey which CCN and Newton intend to continue into 2025, looking more deeply into specific areas of this wide-ranging collection of services. That this report has come at a particularly propitious time was unexpected when this work was commissioned – at that time councils were still focused on preparing for previous proposals for social care reform that had been due to come into effect in 2025. Now that these have been abandoned and the new Government is embarking on its own review before determining ways forward for the social care system, we sincerely hope that this timely study can feed in and help to inform next steps in the development of this crucial area touching the lives of so many of our most vulnerable in society. Councillor Martin Tett County Councils Network Spokesperson for Adult Social Care and Leader of Buckinghamshire Council

The findings in this report highlight some crucial learning for policy makers and professionals alike. Whilst the size of the working age and lifelong disabled cohort has remained static in recent years, spending on many individual packages of care has continued to rise – partly driven by the recent period of inflation, but also by statutory increases to the minimum wage which the social care sector is particularly sensitive to given the rates paid to many of the workforce, and by increases in the average level of support provided per person. There are also grounds for considering how far the number of working age and lifelong disabled individuals needing social care support may rise in the coming years. In particular the dramatic increase in need for children with Special Educational Needs and Disabilities (SEND) over the past decade v , as well as the widely reported crisis in mental health among young people, suggests that there may potentially be a commensurate increase in demand for support for adult social care around the corner as these children move into adulthood. In particular, better co-ordination and support for transition between children and adult services needs to be a priority for central and local government alike. Similarly, multi-agency working both within and across councils, and with the NHS, are crucial – the report argues for a more preventative approach to supporting these individuals from an early age. The needs of working age and lifelong

Given that many people think of their local authority’s responsibilities as primarily collecting waste, repairing roads, or maintaining parks, it can often come as a surprise that it is actually social care which makes up the vast majority of upper-tier councils’ activities. It also makes up the majority of upper tier councils’ spending – figures published earlier this year by the County Councils Network showed that across its 37 member authorities, social care for adults and children accounted for 69% of their total budget on average, rising to over 75% for some county councils (where some services such as planning and housing are delivered across a parallel network of District Councils). i The larger part of this social care budget is spent on support for adults, which is most often perceived as being services to support older people in their declining years of life. Indeed as the public discussion over reforming social care has increased in recent years, almost all of the debate has been concentrated on this cohort, with particular focus on what point, and how much, people should be expected to pay for their care. Yet, again, many people are unaware that in reality, over half of the overall budget for adult social care services is actually spent on adults of working age and those with a lifelong disability. This includes those with a wide range of long-term physical disabilities, mental health conditions or learning disabilities. Despite this group containing some of the most vulnerable people in the country, minimal focus has been given to them in recent conversations about social care reform – an oversight compounded by the fact that charging reform will make hardly any difference to this cohort given that the vast majority do not have assets that would set them above any threshold for self- contributions to their care. This report aims to start to rectify this oversight by shining a spotlight on this neglected area. Following previous successful collaborative reports including The Future of Social Care ii , Preparing for Reform iii , and Finding A Way Home iv – all of which have helped to shape national and local policy for social care – the County Councils Network has again partnered with Newton to explore the present situation on the ground.

Councillor Martin Tett

The findings in this report highlight some crucial learning for policy makers and professionals alike.”

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01: Executive summary

Context 40% of people receiving adult social care support in England are working age individuals aged 18–64 with a disabled condition (a learning disability, a physical disability or a mental health condition) who make up the working age adult population, or individuals aged 65+ with a lifelong disabled condition (a learning disability or long-term mental health condition). Yet historically, there has been less of a national focus on these younger individuals and those with a lifelong disabled condition who require adult social care support to maximise their independence, compared to older adults with declining physical health, frailty, or dementia. Meanwhile, national expenditure on social care support for working age and lifelong disabled adults has risen by over a third between 2020 and 2023 in England, with forecasts for the 2024 financial year even higher, despite the total volume of individuals in this population supported not having risen over this period. Most importantly, outcomes for these adults do not appear to be improving in line with this increased expenditure, in terms of health, education, employment, and social interactions and relationships. In addition to improved outcomes, if working age and lifelong disabled adults are enabled to have better and more equitable access to the right education, employment and housing opportunities, they would also be supported to develop the skills to more actively participate and contribute to their local community through work, volunteering, and education, as they make clear is important to them and just as for their non-disabled peers. It is therefore these two cohorts of individuals (working age and lifelong disabled adults) which this programme of work explores in further detail. Programme overview The research programme was commissioned by the County Councils Network (CCN) and delivered in partnership with representative groups from across the health and social care sector, including an advisory group. It has been supported by Newton, who gathered the

evidence and insight presented. This involved bringing together analysis from several sources, including national data sets, bespoke data requests provided by a sample group of 16 participating local authorities, and change programmes undertaken by Newton. This was overlaid with the rich insight from many conversations, and the report aims to reflect the breadth and depth of the views, opinions, and examples of good practice shared. Colleagues from across CCN’s network of 20 county councils and 17 unitary authorities were invited to contribute. The purpose of the programme of work has been to: • Raise the profile of the key issues faced by individuals aged 18–64 with a disabled condition (known as working age adults) and individuals aged 65+ with lifelong disabilities. • Understand the impact on outcomes being achieved, and if these outcomes are being achieved in the most effective way. • Understand the likely changes to demand coming into the system. • Analyse in detail the different cohorts of these adults receiving adult social care and identify recent trends in package type, age, deprivation, gender, ethnicity, region, or changes in package costs. • Recommend cohorts which might require initial focus of local intervention and national policy. • Provide a series of recommendations and priorities for local action and national reform. In short, this report – the first output from this programme of work – aims to put these individuals at the centre of the national conversation on social care and help start a conversation about the key topics and issues that can make a meaningful difference to people’s lives . This is particularly timely given the new Government and the potential Royal Commission on social care, and as a result this report seeks to inform both.

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The case for better outcomes for working age and lifelong disabled adults There is no single, agreed definition of what good outcomes could or should look like for working age and lifelong disabled adults. However, as Social Care Future defines, “everyone wants to live in a place they call home, surrounded by loved ones, in communities where people look out for one another, doing the things that matter to them” vi . Being independent means

Increasing demand from transitions to adulthood In the context of already rising expenditure, understanding further changes to demand coming into the system is particularly important. With the increase in the number of individuals in receipt of local authority support for Special Educational Needs and Disabilities (SEND), many authorities have expressed a need to better understand the likely long- term impact this will have on adult social care services, as they ‘transition’ from childhood to adulthood. The report explores the expected volume, timing, and potential cost of increasing transitions of younger adults from children’s services over the next 10 years. There are six key findings: • Finding 1: There will be a temporary 20% increase in the number of all 18-year-olds, peaking in 2030. • Finding 2: The proportion of young people with Education, Health and Care Plans (EHCPs) has increased by 140% and is still increasing. Whilst it is expected that most of this group will not meet the eligibility for ongoing adult social care support, it will nonetheless be likely to lead to an increase in demand. • Finding 3: Combining the above factors, the forecasting carried out for this programme shows that the number of transitions per year is expected to increase, resulting in at least 25% more people a year by 2030. • Finding 4: The number of individuals who will not transition to adult services but who will likely need additional support from the local authority and wider place system is also set to increase. • Finding 5: The forecast net increase in expenditure for support for 18–24-year-olds for adult social care is expected to be at least 40% more by 2030. • Finding 6: The differences in the needs and support for young people transitioning from SEND support to adult social care are wider than most other age categories.

Model of care : Many of those engaged shared the view that the delivery model for working age and lifelong disabled adults is out of date and needs redesigning. I wish they’d involve me more in planning my care. The social worker often just talks to the carer, not me. It makes me feel invisible.” John, 32 Housing: Inappropriate and insufficient housing was highlighted repeatedly through this programme as a key issue preventing optimal outcomes being achieved for working age and lifelong disabled adults. In particular, the lack of suitable local authority housing was cited as leading to a greater use of supported living, reducing independence and driving up cost. If I had my own house I’d have my own independence. I’m still living at home and we’ve been trying for years but we keep being told there is no way.” Salman, 34 Whole-system working: Stakeholders agreed that a whole-system and multi- agency approach is essential to both improving outcomes and improving financial sustainability. The interfaces with housing and health were highlighted as being particularly important. Commissioning and market management: Several authorities engaged said that they are grappling with feeling somewhat ‘at the mercy’ of local and national chains of care providers who they believe to be resistant to changing packages of support and who are seen to prioritise the more financially lucrative older adult self-funder market. Many stakeholders also raised issues relating to requirements for high levels of bespoke support (e.g. 1:1 or 2:1 support) being specified as a minimum requirement by providers.

I asked for a cleaner as I have trouble with physical things but they won’t give me one, they’re too rigid. It needs to be more centred around the person. You can have some things like entertainment or travel, but if you want something else they seem reluctant, especially if it doesn’t fit in with them.” Amy, 46 Drivers of cost of support The report explores the key drivers of cost of support for working age and lifelong disabled adults. In doing so it demonstrates that, perhaps surprisingly: 1. Support for working age and lifelong disabled adults has become the largest area of expenditure in adult social care. It made up 63% of the net adult social care commissioned spend in England in the financial year 2022/23 – £10.1bn ix . 2. This area of expenditure has also been growing faster than any other part of adult social care. Expenditure on support grew by 32% between 2019/20 and 2023/24, which is a faster rate than the growth rate of inflation and the minimum wage, and faster than the growth rate of expenditure on support for older adults. 3. Expenditure is increasing due to the type of care which working age and lifelong disabled adults are receiving. The report demonstrates all areas of adult social care are seeing rising costs due to factors such as inflation and the minimum wage. However, the increase in average level of support per person is higher for working age and lifelong disabled adults than for older adults, and is due particular attention. The financial analysis undertaken for this report calculates the direct costs of councils' commissioning of care and support, such as residential and home-based care. This makes up the majority of adult social care spend and excludes costs of council staffing and back- office functions.

having my own life and my mum having her own life. My mum hasn’t had a chance just to have her own time, she’s always worrying about me.” Dan, 27

Although these outcomes are achieved (to a varying extent) for many individuals, this is not yet the case for all working age and lifelong disabled adults. The report highlights several of the outcome inequalities that disabled people experience, across health, education and employment, and social interactions and relationships, demonstrating the scale of what remains to be achieved. For example, working age disabled adults are 2.5 times more likely to leave education with no qualification vii , and while 86% of unemployed people with a learning disability want a paid job (estimated to be approximately 950,000 people in England aged over 18-years-old), only 5.1% of adults with a learning disability known to their local authority are in paid employment viii . However, through sector engagement carried out for this programme, all those engaged raised several issues in the current system which they believe to be impeding the delivery of improved outcomes. These are key barriers which stakeholders engaged believe will need to be overcome by local and national government in the coming years, and which will be explored further in the second phase of this programme in 2025.

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This insight can be used by local authorities to help inform the planning and design of support for working age and lifelong disabled adults. Improving outcomes for the working age and lifelong disabled adults’ population To better understand the working age and lifelong disabled adults population receiving adult social care in a meaningful and non- anecdotal way, and to help provide an evidence base for targeted improvement activity, this programme conducted detailed analysis into the similarities and differences between different individuals and the ways in which they are supported. This provided a rich and data-led articulation of 12 different groups or cohorts of people who receive support beyond one reason or individual factor. Of the 12 main cohorts into which working age and lifelong disabled adults can be categorised, there are six key cohorts which – based on the data analysed for this programme – warrant particular attention for authorities seeking to improve both outcomes and the financial sustainability of the support provided. These were identified due to average package costs being typically high, and where significant escalations in cost are evident. These are shown below in order of relative total cohort spend. 1. LD Cohort Two: 40+-year-olds with high needs and whose care packages are increasing slightly in cost 2. LD Cohort Three: 18–39-year-olds with high needs and whose care packages are increasing slightly in cost 3. LD Cohort Six: Individuals with high needs and whose packages of care are increasing significantly 4. LD Cohort Four: Individuals with low levels of need and whose packages of care are escalating in cost 5. MH Cohort Three: Individuals with average levels of need whose packages of care are increasing significantly in cost 6. PD Cohort Two: 40–65-year-olds with average levels of need and whose packages of care are increasing in cost

for this programme reported that 24-hour residential and nursing placements are often used due a lack of alternative housing options to enable the provision of low- level background support, subsequently costs. Additional suitable housing provision is also required to support individuals with moderate levels of need who reportedly rely more heavily on sometimes inappropriate supported living accommodation, due to a significantly reducing individuals’ independence and also increasing lack of suitable local authority housing. 4. Improved approach to recording and collection of key data relating to care for working age and lifelong disabled adults at a national level, to enable improved understanding and insight: Although much insight is available already through national returns, the analysis conducted for this programme was constrained by limitations and gaps in the data available nationally. Greater guidance and clarity to improve data collection and recording for local authorities would be likely to significantly improve data quality and the resulting understanding of this population. 5. A review of national funding for working age and lifelong disabled adults: There was a widespread view amongst stakeholders engaged that the current means of funding support for working age and lifelong disabled adults is not fit for purpose. An improved national model for working age and lifelong disabled adults is required to ensure that funding comes from the right source and gets to the right place. Furthermore, the analysis for this programme shows that the quantum of funding for working age and lifelong disabled adults also needs to be reviewed. This report demonstrates that the expected unmitigated level of growth in expenditure, even with inflation at low levels, is expected to reach 46% more by 2030 in comparison to current expenditure. This equates to an additional cost of £6bn per year for local authorities and would require significantly more funding to ensure quality and safety of support is maintained.

The report looks in detail at why these cohorts should be a priority, and how outcomes can be improved for them. Interim recommendations This programme has identified that, in addition to the imperative to improve outcomes for working-age and lifelong disabled adults, there is a financial necessity to improve the current model of support. Unmitigated without system reform, and with a continuation of current adult social care support trends, analysis indicates that forecast overall expenditure on support for working age and lifelong disabled adults will be 50% more per year – or £6bn more – for England by 2030. Analysis also indicates that 18–24-year-olds currently account for £1.4bn a year in adult social care support (13% of expenditure on working age and lifelong disabled adults). Although the majority of the increased number of young people with Education, Health and Care Plans (EHCPs) will not be eligible for adult social care support, it is expected that expenditure on support for 18–24-year- olds will grow by at least 40% by 2030 as a consequence of increases in SEND and population growth. In this context, and based on the engagement undertaken for this programme, there is consensus across the system that there is potential for the scale of system progress to be achieved in the next 5–10 years that has historically taken nearer 30 years to achieve. To achieve a substantial improvement in outcomes and the financial sustainability of these services, a greater national focus on working age and lifelong disabled adults is vital, involving a more prominent and more transparent debate as to how this can be achieved. This greater focus also needs to be supported by significant reform at both a local and national level. There is no doubt that reform on this scale will be challenging – local authorities engaged through this programme reported having grappled with the issues identified in this report for many years with varying degrees of success.

The interim recommendations set out below will form the basis of the next phase of this programme, to be delivered in 2025. This second phase will build on the case for change demonstrated in this report and will look in more detail at what the evidence indicates are the practical changes that should be made at a local and national level to deliver better outcomes for working age and lifelong disabled adults. Priorities for national decision-makers 1. Delivering better outcomes for working age and lifelong disabled adults needs to receive more focus in the national conversation on social care: Working age and lifelong disabled adults require a greater level of priority from political leaders and central government departments. Support including research bodies, advocacy groups, charities, and professional bodies. A new policy framework could also be beneficial, for example by refreshing the 2001 Valuing People white paper. Improving outcomes for working age and lifelong disabled adults should be a key focus of the Government's proposed national care service, to support this greater national focus and priority. 2. Defining a common ambition for exceptional outcomes for and with working age and lifelong disabled adults, with promoting independence and preventing escalation of need at its core: To know whether optimal outcomes are being achieved with the most appropriate use of resources, it is important to be able to define what this looks like, centred on what working age and lifelong disabled adults say is important to them. If there can be agreement on the aspiration, the most cost-effective means of achieving those outcomes can be identified, and there can be confidence that outcomes and cost are being measured on that basis. is also required from national bodies essential for sector-led improvement, 3. New housing solutions for disabled adults, to help move away from both a reliance on 24-hour residential and nursing placements, and also away from supported living being used due to a lack of alternative housing options: New housing solutions are required for a wide range of working age and lifelong disabled individuals. Stakeholders engaged

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3. An approach which places maximising individuals’ independence at its heart, including long-term planning with providers and with families, to ensure that over-provision of support is minimised . Innovation and investment is needed to take a more forward-looking, preventative approach and improve longer-term outcomes. Such an approach requires more effective transition planning from an earlier stage, as well as more joined up working with a wider range of partners, in particular schools. An in-depth understanding of different cohorts’ needs (as illustrated in this report) will also be important for effective targeting of appropriate preventative interventions, for example identifying key points in people’s life journeys where timely and appropriate support can prevent needs from escalating. 4. A specific focus and investment on the 18–25 transitions cohort to ensure a proactive and joined up approach to meeting the needs of young people, both those who transition to adult services, and those previously in receipt of an EHCP who are not eligible for adult social care but still have needs. Modelling for this report estimates that there will be at least 25% more 18–19-year-olds transitioning to adult social care by 2030, and the support for 18–24-year-olds will cost at least 40% more for adult social care services by the same year. There will also be increasing demand from individuals who previously had an EHCP but will not be eligible for adult social care. All these individuals are likely to require support from, if not adult social care, other local authority departments and a new approach will be needed to ensure that increased future need is managed and prevented. Specifically, a review may be required of the ongoing model of support from local authorities and partners for individuals with autism only, or social, emotional and mental health difficulties.

Support for working age and lifelong disabled adults made up 63 % of the net adult social care commissioned spend in England in the financial year 2022/23. Expenditure is increasing due to the type of care which working age and lifelong disabled adults are receiving. Forecast overall expenditure on support for working age and lifelong disabled adults will be 50 % more per year – or It is expected that expenditure on support for 18–24-year-olds will grow by at least 40 % by 2030 as a consequence of increases in SEND and population growth. £6bn more – for England by 2030.

Priorities for change at a local level 1. Whole system change for working age and lifelong disabled adults based on their specific needs, not based on an older adults’ model. Stakeholders engaged through this research programme argued that the current delivery model for working age and lifelong disabled adults is out of date and needs redesigning, in close conjunction with people with lived experience and with a wide range of system partners. They agreed that this must continue to be a social model of care and support, not a medical model, and be more strengths-based. The role of local partners should be prioritised, for example maximising the role of education partners. Nationally, the Department for Work and Pensions (DWP) is an example of a partner who could play a different role by supporting better employment outcomes for working age and lifelong disabled adults. Clarifying shared and measurable objectives across partners will help to improve alignment and reduce current fragmentation.

2. A more effective approach to influencing and managing the market, ensuring that commissioning best practice is implemented, and working with providers to develop a jointly beneficial arrangement. Several authorities engaged in this programme reported needing to increase their use of more expensive out of area placements to meet local needs or feeling ‘at the mercy’ of the provider market. There were also reports of ‘handbacks’ from providers happening more frequently, negatively affecting individuals and often increasing package costs. More widespread use of commissioning best practice could help to address this issue. For example, through more long-term, strategic planning; more rigorous use of local population data to inform commissioning decisions; working with and responding to variation in local provider set-ups; and a more rigorous and consistent approach to managing local markets. In addition, there is potential for commissioning best practice to be shared and implemented more widely across adult social care nationally, so that local authorities are managing their local providers and markets to best effect.

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If we enable working age and lifelong disabled adults to have better and more equitable access to the right education, employment and housing opportunities, they can lead ‘gloriously ordinary’ lives. In addition to better outcomes, this would also enable them to develop the skills to more actively participate and contribute to their local community through work, volunteering, and education.

There is an opportunity to reform the system , with central government support and local delivery. This requires a shift to a model of support which genuinely maximises the independence of each individual , by developing a care system which is more aspirational and less risk- averse , and which as a result reduces institutionalisation and over-provision of care.

Outcomes for these adults do not appear to be improving in line with this increased expenditure, in terms of health, education, employment, and social interactions and relationships. For example:

Life expectancy is 20 years shorter than people without a disability

Working age disabled adults are 2.5 times more likely to leave education with no qualification

Expenditure on adult social care support for working age and lifelong disabled adults has increased by 32 % between 2019 and 2024. This makes support for working age and lifelong disabled adults the largest and fastest growing area of expenditure in adult social care 1 Increased spending is driven primarily by the complexity and type of care that individuals are receiving. The average level of weekly expenditure per individual has increased by 31 % between 2019 and 2024.

Without reform, total council spending on working age and lifelong disabled adults will need to increase by 50 % by 2030. While 86% of unemployed people with a learning disability want a paid job, only 5.1% of adults with a learning disability known to their local authority are in paid employment

Working age and lifelong disabled adults make up 40 % of all adult social care service users.

There are several key enablers to making this shift happen:

More focus in the national conversation on social care

In 2023/24, 63

Defining a common ambition for exceptional outcomes

New housing solutions for disabled adults

of the net adult social care commissioned support budget was on working age and lifelong disabled adults.

A review of national funding

A combination of crucial local enablers

14 (1) Support for working age and lifelong disabled adults makes up 63% of the net adult social care budget in England in the financial year 2022/23 – £10.1bn. This area of expenditure has also been growing faster than any other part of adult social care. Expenditure grew by 32% between 2019/20 and 2023/24, a faster rate than of growth than inflation and the minimum wage, and faster than the growth rate of expenditure on support for older adults.

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02: Introduction

Context 40% of people receiving adult social care support in England are individuals aged 18–64 with a disabled condition (a learning disability, a physical disability or a mental health condition) who make up the working age adult population, or individuals aged 65+ with a lifelong disabled condition (a learning disability or long-term mental health condition). On the one hand, there have been radical shifts in how social care services have supported people with physical and learning disabilities or mental health conditions over the last few hundred years, for example from the use of asylums in the nineteenth century to the community model of today. There has been a step change in attitudes, in the efficacy of support, and in the associated outcomes achieved for these individuals. However, evidence also suggests that there is a strong case for doing more – or doing things differently. Historically, there has been less focus on younger individuals with a disabled condition and older adults with a lifelong disabled condition who require adult social care support to maximise their independence. Older adults with needs associated with frailty, declining health, or memory issues tend to receive the primary focus of the national narrative. When asked about social care people will often talk about older adults; when searching for social care on news sites, results will nearly all be about older adults; at national health and social care events, the focus is often on older adults; and in a similar way, much of the historical national policy agenda has focused on older adults. There has been no national policy development specifically aimed at improving outcomes for people with a learning disability since the ‘Valuing People’ white paper in 2001.

Meanwhile, national expenditure on support for working age and lifelong disabled adults has risen by over a third between 2020 and 2023 in England with forecasts for the 2024 financial year even higher. Support for working age and lifelong disabled adults has now become the largest area of expenditure in adult social care, making up 63% of the net adult social care commissioned spend in England in the financial year 2022/23 – £10.1bn x . This is despite the total volume of individuals with a learning disability supported not having risen over this period. At the same time, and most importantly, outcomes for these adults do not appear to be improving in line with this increased expenditure, in terms of health, education, employment, or social interactions and relationships. It is therefore these two cohorts of individuals (working age and lifelong disabled adults) which this programme of work is most interested in exploring in further detail. In doing so, it has sought to put them at the centre of the national conversation on social care and help start a conversation about the key topics and issues that can make a meaningful difference to people’s lives . It has also sought to put forward a series of local and national interim recommendations for how these individuals can be better supported in a way which improves their life outcomes, while also maximising the use of limited resources. The interim recommendations put forward in this report will form the basis of the next phase of this programme, to be delivered in 2025. This second phase will build on the case for change demonstrated in this report and will look in more detail at what the evidence indicates are the practical changes that should be made at a local and national level to deliver better outcomes for working age and lifelong disabled adults.

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Who do we mean by working age and lifelong disabled adults receiving adult social care? How do adult social care services support people with disabilities? There has always been a proportion of adults in society who have additional needs or who are vulnerable. Nearly everyone will at some point in their lives experience a physical or mental health condition that reduces their ability to carry out day-to-day activities (such as a broken limb, a cold or flu, or a period of lower mental health). However, a smaller proportion will experience a physical or mental health condition through which they will experience such an impact for 12 months or more. In 2021, the Office for National Statistics identified that 17.8% of the population of England and Wales were disabled (as defined by the Equality Act and able to be medically diagnosed), equating to over 10 million people xi . This group of people includes those with a disability and entering older age, where frailty and declining health is met with a different lifestyle and an increasing need for support, but also includes those with different needs at younger ages. Some individuals with disabilities will require support from social care services. This is typically offered to those with a higher level of need – less than 10% of the total 10 million people reported to have disabilities in England and Wales xii . Whilst these individuals may additionally receive support from the NHS for any medical factors relating to their condition, adult social care’s goal is to ensure individuals live a fulfilling life, where they are able to realise their potential to contribute to their local community xiii (rather than treating their condition). Adult social care does this by providing support to help adults of all ages with physical or learning disabilities and autism, mental illnesses, or substance misuse. This can either come from helping them directly or by supporting their carers and networks.

Purpose of this report The programme of work was commissioned by the County Councils Network (CCN) and delivered in partnership with representative groups from across the health and social care sector. It has been supported by Newton, who has gathered the evidence and insight presented. The purpose of the programme of work has been to: • Raise the profile of the key issues faced by individuals aged 18–64 with a disabled condition (known as working age adults) and individuals aged 65+ with lifelong disabilities. • Understand the impact on outcomes being achieved, and if these outcomes are being achieved in the most effective way. • Understand the likely changes to demand coming into the system. • Analyse in detail the different cohorts of these adults receiving adult social care and identify recent trends such as age, deprivation, and changes in package costs. • Recommend cohorts which might require initial focus of local intervention and national policy. • Provide a series of recommendations and priorities for local action and national reform. In short, this report – the first output from this programme of work – aims to put these individuals at the centre of the national conversation on social care and help start a conversation about the key topics and issues that can make a meaningful difference to people’s lives . It has also sought to put forward a series of local and national recommendations for how these individuals can be better supported in a way which improves their life outcomes, while also maximising the use of limited resources. This is particularly timely given the new Government and the proposed Royal Commission on social care, and as a result this report seeks to inform both.

Adult social care and public health services also support many people with alcohol, drug and other substance use issues – these issues can also be a significant factor alongside other presenting issues, and although not the focus of this study, do have an impact on individuals’ needs, risks, and associated costs. Who do we mean by working age individuals supported by adult social care services are older adults above the age of 65 whose needs have increased, often from declining physical health and frailty, and increasingly from conditions such as dementia. There is a crucial interdependency between adult social care and the National Health Service in supporting this population. This has and will always be a significant group within the health and social care system, and continued innovation and reform is required to ensure that the system is adapting to the changing needs of the people requiring support. However, almost half (40%) of people receiving adult social care support are either: and lifelong disabled adults? A significant proportion (over 60%) of • individuals aged 18–64 with a disabled condition (a learning disability, a physical disability or a mental health condition) who make up the working age adult population, or • individuals aged 65+ with a lifelong disabled condition (a learning disability or long-term mental health condition). These individuals (who will be termed ‘working age and lifelong disabled adults’) are the focus of this report.

This report begins by describing the historical background to how public services have supported working age and lifelong disabled adults. In this context, Section 4 offers an evidence base which makes the case for opportunities to achieve better outcomes for these individuals. The report then considers the system supporting working age and lifelong disabled adults, with Section 5 exploring the key drivers of cost for support for working age and lifelong disabled adults, while Section 6 analyses the likely changes to demand coming into the system, specifically from transitions to adulthood for 18–25-year-olds. Section 7 of the report then looks in detail at the different cohorts of working age and lifelong disabled adults receiving adult social care support. In doing so, it identifies the most significant recent trends in terms of age, ethnicity, deprivation, support type, and package cost. It suggests specific groups of individuals who require the greatest local and national focus when it comes to opportunities to improve outcomes and reduce cost. Section 8 provides a consolidated summary of the key findings from this analysis, and the report concludes with Section 9 which offers a set of recommendations and priorities for local action and national reform.

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03: Methodology

• facilitate engagement with wider groups of individuals to input into the research, for example by chairing roundtable discussions • identify good practice to be included in the analysis and this report. The advisory group members were: • James Barber, Head of Adult Social Care Strategy & Briefing, Department for Health and Social Care • Anna Earnshaw, Chief Executive, West Northamptonshire Council and ACCE Joint Social Care Lead • Mark Fitton, Director of Adult Social Services, Worcestershire County Council • Patrick Flaherty, Chief Executive, Staffordshire Council and ACCE Joint Social Care Lead • Anjan Ghosh, Director of Public Health, Kent County Council • Jess McGregor, Director of Adult Social Services, London Borough of Camden • Jackie O’Sullivan, Executive Director of Strategy and Influence, Mencap • Phil Rook, Chief Financial Officer, Worcestershire County Council and representing the Society of County Treasurers • Rachael Wardell, Director of Children’s Services, Surrey County Council • Richard Webb, Director of Adult Social Services, North Yorkshire Council, and County Health and Social Care Forum Joint Chair • Simon Williams, Director of Adult Social Care Improvement, Partners in Care and Health (PCH), Local Government Association CCN and Newton would like to extend their thanks to all those involved in this programme of work for being so generous with their time, expertise, and support.

This report is the result of a programme of work which involved bringing together analysis from several sources, including national data sets, bespoke data requests provided by a sample group of 16 participating local authorities, and change programmes undertaken by Newton. This was overlaid with the rich insight from many conversations; the report is designed to reflect the breadth and depth of the views, opinions, and examples of good practice that have been shared. Colleagues from across CCN’s network of 20 county councils and 17 unitary authorities were invited to contribute. To provide a balance of perspectives, national representatives and colleagues from non- county unitary, metropolitan, and London boroughs also engaged with the research, with a view to developing conclusions that should be relevant to the whole sector. Engagement In the summer of 2024, six roundtables and numerous one-to-one conversations were undertaken with leaders from local government. Chief Executives, Directors of Adult Social Services, Directors of Children’s Services, and Directors of Finance contributed to the discussions, as well as representatives from the Local Government Association (LGA). Two dedicated engagement sessions were also held with individuals with lived experience, to ensure that their perspective was represented in the research. In total, over This work programme was overseen by a cross-sector advisory group. The advisory group’s objectives were to: • set the direction for the work, and ensure a high-quality output • build cross-sector alignment and broad agreement of the high-level recommendations 60 individuals contributed. Advisory group

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An introduction to disabilities This report focuses on individuals aged 18–64 with a disabled condition (a learning disability, a physical disability or a mental

Data analysis This programme of work involved completing in-depth analysis to better understand the working age and lifelong disabled population. National level insight into the historic and current trends was produced, alongside the forecasting of potential future impact. This included understanding the current and potential future impact on demand for adult services from individuals aged over 18 as a result of growth in SEND provision since legislative changes in 2016. 16 local authorities volunteered to take part in the programme’s local analysis, providing detailed data on the working age and lifelong disabled adults they support, their demographics, and the packages of support they received over the last four years (2020/ 21–2023/24 inclusive). Data from participating authorities received by August 2024 was used for the analysis, which will be updated as required with the participating authorities to support their local analysis. This enabled an evidence-based analysis of: • their reasons for requiring social care support • the volumes of individuals receiving different types of social care support • the costs associated • other factors which may contribute to need and outcomes, such as age, gender, and levels of deprivation in the local area • the extent to which any of these factors are staying constant or are changing. The method used to analyse this information was a popular machine learning algorithm: k-means clustering. This type of artificial intelligence is able to analyse vast numbers of individual cases, and analyse what they have in common, or what links them. The output is then a prioritisation of various factors and a grouping of appropriate features (such as demographic features, costs, and the way costs are changing over time for an individual). This has enabled a rich and data-led articulation of the different groups or cohorts of people who receive support beyond one reason or individual factor.

The extent to which these disabilities may impact an individual in their everyday life will vary. Naturally, the severity of the impairment if it is a constant condition makes a difference (e.g. partial or total sight loss), but it is also important to recognise other reasons that will affect the extent of the impact of the condition on an individual’s life, including: • What the activity is: few impairments will make every activity equally challenging. • How experienced the individual is and what their routine involves: few people complete an activity for the first time with the same level of assurance and expertise as when they’ve completed it for the hundredth time. • The nature of an individual’s environment: there is often difficulty in replicating something you can do in your own home (often with your own equipment or possessions, on your own, or with familiar company and surroundings) in an alien environment. • How adaptable aspects of society are: much of society is designed for ‘average’, despite this not typically reflecting how society operates. If important aspects of life are not sufficiently adaptable to different needs, the extent to which someone’s condition may affect their ability to interact with that aspect of life may vary. • Societal expectations and stigma: Societal stigma has a very real impact on limiting how someone can complete aspects of day-to- day life. This might include, for example, people with a learning disability being talked to or considered like children into their adulthood. All of these, similarly as they do for non- disabled individuals, have an impact on individual’s ease in completing day-to-day activities, and therefore the type or level of support they may need around them. In addition, these needs are not static – what someone needs in terms of support or adaptations will change throughout their life, for different areas.

health condition), and individuals aged 65+ with a lifelong disabled condition (a learning disability or a long-term mental health condition). The Equality Act (2010) shows the variety and breadth of impairments that can lead to a disability, such as: sensory conditions (e.g. visual

This data was used to build on and enhance local level insight to identify the main characteristic groups most authorities are likely to have, as well as any trends which are unique to particular authorities and regions. This analysis was provided to the 16 participating local authorities. The 16 participating local authorities represent 21.6% of all of England’s working age and lifelong disabled adults in receipt of adult social care support. As much as possible, statistically reliable data sources have been used. However, in some cases, where data is difficult to obtain, small samples have been gathered manually and analysed. In the analysis of national datasets, the data does not always allow for a perfect comparison. While best efforts have been made to navigate this, it inevitably leads to some degree of assumption and approximation. Where this is the case, the data is clearly highlighted. The financial analysis undertaken for this report calculates the direct costs of councils’ commissioning of care and support, such as residential and home-based care. This makes up the majority of adult social care spend and excludes costs of council staffing and back- office functions.

and hearing impairments) those with fluctuating or

recurring effects (e.g. chronic fatigue syndrome and epilepsy) progressive conditions (e.g. motor neurone disease) organ specific (e.g. respiratory conditions such as asthma, and cardiovascular conditions such as heart disease) developmental conditions (e.g. autism spectrum disorder, dyslexia, and dyspraxia – often recognised under the (e.g. anxiety, eating disorders, post-traumatic stress disorder and bipolar) mental illnesses (e.g. depression and schizophrenia) and those caused by injury to the body (e.g. loss of a limb, or brain damage). neurodiversity term) learning disabilities mental health conditions

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