The forgotten story of social care

A new policy framework could also be beneficial, for example by refreshing the 2001 Valuing People white paper which set out the then Government’s proposals for improving the life chances of people with learning disabilities. 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 At present there is little available in terms of guidance and definition of what good outcomes look like for working age and lifelong disabled adults in relation to adult social care support. There is even less in terms of vision or aspiration for what best in class support looks like. 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 – 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. Although of course the ideal outcome for each person will vary from individual to individual, having several core principles defined will help to support improvement and progress tracking. In addition to understanding the differences in need between working age and lifelong disabled adults in comparison to the needs of older adults, a better understanding is required of how the needs of people with whole life conditions vary from those who come into the system for a shorter period – a different response and model of care is needed for both cohorts to achieve optimal outcomes for each. 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 The extent to which local areas’ housing provision effectively meets the needs of its working age adults was queried by many individuals engaged in this programme.

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 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 To enable the scale of reform required in this area, greater local and national attention, focus, and support is required. Within local systems, authorities (including all departments of adults’ social care, children’s social care, education, housing, and corporate services), local partners (health bodies, local employers, providers, and schools), and residents (those who draw on support, families, and carers) will need to invest time and resources into understanding their current position and ambitions together. Nationally, working age and lifelong disabled adults require a greater level of priority from political leaders and central government departments. Support is also required from national bodies essential for sector-led improvement – including research bodies, advocacy groups, charities, and professional bodies. 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. A greater focus on outcomes and support for working age and lifelong disabled adults in the media would help to improve the public’s awareness of the lives, aspirations, and challenges of this community. This could help bridge the gap in making disabled people feel more included and contribute towards improved outcomes.

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 is required to ensure that funding comes from the right source and gets to the right place. This may require exploring alternatives to funding support through means other than through council tax. The relationship between local authorities and the NHS, for example, is critical for improvement, with gaps between Care Act and Continuing Healthcare eligibility leading to a greater cost impact for local authorities. Many authorities engaged reported having seen significant ‘cost shunts’ from the NHS to the local authority in recent years through programmes such as Transforming Care, which is having a significant impact on local authority budgets. Furthermore, in addition to the model of funding, 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.

Stakeholders engaged 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 significantly reducing individuals’ independence and also increasing 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 lack of suitable local authority housing. Housing is crucial for delivering good outcomes for working age and lifelong disabled adults, but there are particular complexities of managing this inter- dependency in a two-tier environment which also need to be managed. There is also a requirement to ensure the inclusion of supported housing options in new housing and planning reforms and local planning targets. 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. In addition, further extending categories would also be beneficial on completion of national data returns for working age and lifelong disabled adults, as some key package types do not currently translate into current SALT or ASC-FR reporting (e.g. direct payment, supported living, day services), which limits analysis and comparison at a national and regional level.

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