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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