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of care : Many of those engaged shared the view that the delivery model for working age and lifelong disabled adults is out of date and needs redesigning.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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