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Councils are calling for the needs of hundreds of thousands of working age adults and life-long disabled people requiring social care not to be overlooked in government plans for a National Care Service.

It comes as major new analysis by County Councils Network (CCN) and Newton launched at the CCN’s Annual Conference 2024 reveals that the costs of providing care for these individuals is now far outpacing social care to the over 65s, with two-thirds of adult social care commissioning budgets dedicated to working age and lifelong disabled adults.

The report warns increased complexity of individual needs, a substantial rise in placement costs, and ‘inappropriate and insufficient’ housing options could mean councils’ care and support spending for these individuals could top £17bn by 2030, a 50 per cent increase compared to 2024.

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Launching the report to over 200 delegates, including Care Minister Stephen Kinnock, CCN Adult Social Care Spokesperson Councillor Martin Tett said this research shows that caring for working age and lifelong disabled adults is one of the ‘most important and rewarding responsibilities for councils’ but their ‘forgotten needs and challenges’ are constantly overlooked in the debate on reforming adult social care.

Councils in England are responsible for providing adult social care services to older adults aged 65 and over with a physical disability or dementia, alongside working age adults with a life-long physical or mental disability.

Newton’s analysis calculates the direct costs of councils commissioning care and support, such as residential and home-based care. This makes up the majority of adult social care spend and excludes council staffing and back-office functions.

The report shows last year the costs of providing care and support to working age adults and those with a lifelong disability is estimated to have topped almost £11bn, up by a third in just five years. These costs now dwarf the £6bn spent on older adults with a physical disability and dementia.

Rising costs are primarily driven by the increasing complexity and needs of individuals, resulting in a dramatic increase in the costs of care placements, up 32 per cent on average, particularly amongst those with the most acute learning disability needs. The report also reveals that rising placement costs are impacted ‘inappropriate and insufficient’ housing options in local areas for those living for those with lower support needs.

Councils reported often being reliant on limited 24-hour residential and nursing placements due to a lack of alternative housing options. In addition, some councils say they are exposed to needing to use more expensive out of area placements to meet local needs, leaving them ‘at the mercy’ of the provider market.

They also report that they are struggling to contain costs due to providers sometimes being resistant to changing packages of support and prioritising the more financially lucrative market of older adults who pay for their own care.

Councillor Tett told CCN Conference that ‘far too many’ working-age and lifelong disabled adults are inappropriately placed in expensive residential placements due to a lack of other options, which is ‘bad for councils and even worse for care users, who see their independence drastically reduced’.

He has called for reform of the system, including a greater drive to deliver more housing options and better alignment with education and employment opportunities.

The forgotten story of social care reveals the costs of providing care and support for working age adults and those with a lifelong disabled condition is now the largest area of adult social care expenditure in England.

In 2023/24, 63 per cent of all adult social care commissioned support, such as residential and home-based care, was on working age adults, despite these individuals making up just 40 per cent (338k) of all adult social care service users.

The research also found councils have witnessed a dramatic rise in the costs these services over the past five years, up by a third. Councils commissioned expenditure on care and support for working age and lifelong disabled adults has increased from £8.3bn in 2019 to £10.9bn in 2024, a rise of 32 per cent.

Increased spending is driven by the complexity and type of care individuals are receiving, rather than increased numbers of people requiring support, according to the findings. The average level of weekly expenditure per individual has increased by 31 per cent for working age and lifelong disabled adults between 2019 and 2024, from £565 to £735.

Additionally, care packages for working age adults with the most complex learning disabilities have witnessed the most acute rise in placements costs. Individuals in this cohort typically receive a care package with an average weekly cost of £3,316 per person.

This has increased by an average £1,299 in the last year. Support for working age adults with a learning disability is the single biggest element of council commissioning, representing 37 per cent, £6.4bn, of all care and support costs and more than the total amount spent on over 65s.

Without reform councils’ costs to provide care and support for working age adults will grow to reach £17bn by the end of the decade, according to the findings. If the current growth in working-age adult social care support continues, this will lead to a total increased cost to local authorities of at least 50 per cent, or £6bn more per year, for England by 2030.

The report highlights several challenges working age adults face in their daily lives, across health, education, and employment, beyond those faced by their non-disabled peers. It shows that these individuals are twice as likely to leave education with no qualifications compared to those without a disability, and just five per cent of adults with a learning disability known to their local authority are in paid employment.

Alongside CCN calling for a significant increase in funding for councils to meet rising costs to ensure the quality and safety of care services for working age and lifelong disabled adults is maintained, the report outlines the need for a review of funding arrangements for services and proposes a number of reforms to the system to focus more on prevention and to help people live more independent lives to reduce future costs.

Calling for better links between working age adult social care and housing, the report recommends more specific local authority housing suitable for this cohort alongside new requirements for the greater provision of supporting housing options within the government’s planning reforms and local housing targets.

This would help ensure care users with moderate needs can live more independent lives, improving outcomes and reducing costs. It also recommends closer alignment with national and local education and employment sectors to open up education and job opportunities.

The report also calls for working age and lifelong disabled people to have a greater say in reforming local services as well as calling on local authorities to better use population data, analytics, market management and best practice to commission services to reduce placement costs.

Councillor Tett addressed the CCN Annual Conference 2024: “Caring for working age and lifelong disabled adults is one of the most important and rewarding responsibilities councils carry out. But too often in the debate on adult social care their needs and challenges are forgotten.

“Our research reveals that far too many working age and lifelong disabled adults are placed in expensive and sometimes inappropriate residential placements. This is bad for councils and even worse for care users who see their independence drastically reduced.

“For individuals and councils, the National Care Service risks being an empty slogan unless it is backed with a renewed focus on working age adults, and significant increase in funding for councils to meet rising costs and ensure the quality and safety of support is maintained.”

Jackie O’Sullivan, Executive Director of Strategy and Influence at learning disability charity Mencap and an advisory group member for the report, added: “This worrying financial forecast reinforces our concern about the growing demand for adult social care and the lack of funding and suitable provision available to people who need it most.

“We are now seeing an alarmingly large number of young people transitioning to adulthood without the support they need to live independently and play a full part in their communities and society at large. We simply cannot allow that to happen.

“The report highlights that you can’t fix social care without working age and disabled adults being at the heart of creating a National Care Service.”

The UK government has agreed to review the limit paid to help fund specialist adaptations to disabled people’s homes following a legal challenge by a family left unable to meet their child’s needs.

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