Where We Are Now and What We Know

4.1.1 Budgets and Funding

The County Council budget in 2024/25 for adults with a lifelong disability is £144.3m. This includes a pooled budget for adults with a learning disability established through long standing formal Pooled Budget arrangements between the Council and the NHS Sussex Integrated Care Board (ICB). Under these arrangements, the Council is the lead commissioner and contractor of social care and community health services for adults with learning disabilities and funds 81% of the total expenditure. The ICB and the Council are reviewing these longstanding Pooled Budget arrangements to ensure they are still fit for purpose and provide the best arrangements for the commissioning of learning disability services in West Sussex in the future. Changes to the Pooled Budget arrangements may impact on the Council’s requirements for learning disability services in the future and we will provide updates through our provider forums and market engagement events as these changes become known. Like many areas in the country, there are significant challenges for the NHS Sussex ICB and the Council in meeting the increasing costs of eligible social care needs for adults with lifelong disabilities. This is due to increasing demand, complexity and acuity of need and the escalating cost of care due to inflation and increases in the National Living Wage.

To illustrate this, the tables below show how the weekly costs of residential and non-residential placements have increased for adults with learning and other lifelong disabilities since 2020.

Figure 1: Tables 1A and 1B: Average weekly gross cost of residential and non-residential care adults with learning disability and adults with other lifelong disabilities (adults with other disabilities including acquired brain injury, physical and sensory disabilities, and autistic adults without other co morbidities).

Tables note: Each figure is a snapshot value taken from a day in first week in January of that year.

This indicates above inflation increases across all services with the most significant increases in non-residential services for customers with other lifelong disabilities.

The increasing costs in this sector of the market pose significant challenges for both the ICB and Council given the financial pressures which are being faced by both organisations. To ensure that the budget remains sustainable in the long term, we need to ensure that resources are used to deliver the best possible care outcomes for people at maximum value for money and that the models of care and support available in the market can deliver this.

4.1.2 Workforce

Social care services face challenges around recruitment, retention and staff shortages and to address this West Sussex County Council is taking a proactive approach to support local care providers. The Council reviewed how it supports providers to deliver good and sustainable services and as a result developed a new Quality Assurance and Market Support team (QAMS) to build on the previous Care and Business Support and Proud to Care teams. The new team works collaboratively and supportively with providers to improve the quality of all care services.

Proud to Care scheme came to an end in 2024 due to decrease in need for support around recruitment. Nevertheless, retention and recruitment remains a challenge and this prompted the development of the Great Care Employer project which was co-produced with West Sussex Partners in Care and independent providers and has been recognised as good practice by both Skills for Care and NHS England.

The project has developed a self assessment tool to support providers to identify areas of improvement. Providers can also seek support from QAMS on areas of improvement identified and access a range of resources and webinars delivered by QAMS and Skills for Care which is explored further linked to funding issues, in 4.4.1.

4.2.1 Residential and Nursing Care

West Sussex County Council currently commissions residential and nursing care through 3 contractual frameworks; older people, learning disabilities and mental health. Over the next 2 years, the Council will be recommissioning a new Residential and Nursing Care Home Framework to reflect changes in legislation and to provide an inclusive, person-centred framework that is applicable for all customer groups.

The Council contract with 90 residential and nursing care homes registered with CQC to provide services for adults with lifelong disabilities in West Sussex. The majority of homes were rated ‘Good’ (60) with one rated ‘Outstanding’, 18 ‘Requires Improvement’ and 1 rated ‘Inadequate’.

As of November 2024, there were 424 residential and nursing care home placements within West Sussex. Of these, the largest proportion are in the district of Arun followed by Worthing and Horsham. In addition, there were 118 customers (30% of the total) placed out of area with the majority placed within the South-East (see map below) and 5 learning disability residential care homes directly provided by the council providing up to 75 beds.

In 2024-25 and 2025-26 the Council are recommissioning its contractual arrangements for residential care that will apply across all adult client groups. This will replace the 2009 learning disability residential care contract and this project is currently scheduled to complete by April 2027 with a potential 6 month extension to October 2027.

4.2.2 Supported Living

West Sussex County Council have a Supported Living Framework for outreach, live in care services, accommodation-based support and intensive and specialist accommodation-based support for adults with lifelong disabilities and mental health needs. Providers bid to join the framework and must express interest and evidence meeting criteria and competency for different levels of support. These are:

• Lot 1: Outreach support
• Lot 1A: Live in Care Services
• Lot 2: Accommodation Based Support
• Lot 3: Intensive and Specialist Accommodation Based Support.

In June 2024, there were 114 providers contracted with WSCC under the Supported Living Framework contract with 92 providers contracted to provide services for customers with lifelong disabilities. Of these providers, only 70% have active contracts with 868 placements being provided in October 2024.

As indicated in the map below, the largest concentration of supported living placements is in the coastal areas and Horsham and Crawley.

In 2024/2025 and 2025/2026 the Council is reviewing its Supported Living Framework Contract with the aim of improving outcomes for those within services.

4.2.3 Day Opportunities

Day opportunities form part of our preventative services intended to reduce or delay the need for other care and support services, help people develop life and employment skills including travel training, opportunities to develop social skills, find employment or volunteering opportunities as well as provide a break for carers. The Council currently provides day opportunities directly and supports 450 customers through contracts with the independent sector.

The Council has seen a 13% decrease in utilisation of day opportunities since pre-Covid levels in 2019/20. This may be a result of individuals accessing different types of day opportunities within the community, greater uptake of Direct Payments, or receiving other types of support within the community.

As a result of this reduction and to realign services with the Councils’ strategic vision, day opportunities were recommissioned during 2023/24 to provide a range of local, holistic, community-based services to meet a range of needs with supported employment provided on a county wide basis.

The Council would like to see a stronger emphasis on supporting people into paid employment, skills development including travel training, being safe in the community and the use of peer support to promote independence, confidence and well-being. Over the next 2 years the Council will be working with providers, customers and carers to build on the strengths of the current services to coproduce a new offer for day opportunities when the current contracts expire in June 2027.

4.2.4 Respite and Short Breaks

Respite provides an essential break for carers by providing short term support e.g., overnight or during the day. Respite also benefits the customer by providing the opportunity to socialise with others, to learn life skills, increase independence and to receive behavioural support.

Respite is currently provided through several different mechanisms:

• A residential care block contract for 8 residential respite beds and 2 emergency beds in the North of the County
• Spot purchased residential respite
• Directly Provided respite
• Shared Lives
• Day opportunities.

Included within respite provision are ‘emergency beds’ i.e., a temporary placement on a full-time basis. Emergency beds may be needed to temporarily move out of the family home (e.g. due to family illness, adaptations required or to stabilise their behaviours) or to provide short-term support whilst an alternative placement is sourced.

We estimate there are 134 customers currently in receipt of respite:

• 65 people in receipt of respite purchased via Council managed budget.
• 69 people accessing respite via Directly Provided Service (DPS); 30 people accessing residential respite and 39 via Shared Lives service.

In addition, an estimated 58 people fund residential and 116 people fund non-residential respite via a Direct Payment.

Local residential respite provision is mainly for adults diagnosed with a learning disability. Services in the independent sector are primarily in Crawley which increases travel time and costs for customers and carers living in other areas.

During 2024/25, the Council is consulting with stakeholders to co-produce a respite commissioning plan. Based on the feedback so far, we know that we need a more varied and flexible respite offer that is available county wide to meet the full range of needs including young people with complex physical and behavioural needs and particular difficulties sourcing emergency respite for customers with complex needs that may include autism.

4.2.5 Individuals in Placements Outside of West Sussex

Sometimes individuals and their families may choose to be placed outside of West Sussex but out of area placements are also used as a last resort when there are no appropriate services available locally. In July 2024 there were 189 supported living and 118 residential care customers with a lifelong disability placed out of area. The Council are actively looking to develop the market in West Sussex to reduce the need for out of area placements and to enable people to be supported in their local area.

4.2.6 Developing in Partnership

Our priorities have been informed by data analysis and feedback from stakeholders such as the Learning Disability and Autism Partnership Boards, the Provider Forum and professionals in health and social care. Stakeholders have highlighted the need for services for people with high and complex needs, the availability of skilled staff and supporting people to progress to greater independence. The Council are keen to work in partnership with providers to develop and remodel services, promote innovation and explore new and creative models of support.

4.2.7 The Key Priorities That Have Been Identified Are:

• The supply of good quality shared and self- contained accommodation based care across the range of needs. This includes self contained accommodation for individuals who have moderate needs but who find it difficult to share, services for complex behavioural and/or autism needs, accessible accommodation for people with physical disabilities and complex health conditions.
• A range of respite options available on a county wide basis including provision for those with complex physical and behavioural needs and emergency respite to avoid unnecessary admissions to hospital.
• Services that support young people making a transition to adulthood from 16+ to the age of 25 with opportunities to develop life skills and confidence to live independently.
• Services that proactively support people to move-on to greater independence with opportunities to move to a ‘step down’ service within their own local area.
• The Council is keen to hear from any housing providers who wish to develop housing and accommodation which could be available to adults with lifelong disabilities.

4.3.1 Populations Needs Data

• The West Sussex Joint Strategic Needs Assessment (JSNA) published in December 2024 provides a detailed breakdown of population data and analysis of the population of West Sussex. Key findings from the JSNA relevant for adults with lifelong disabilities include:
• Predicted population of 3,690 adults in West Sussex with a learning disability aged 18-64 years with a moderate or severe learning disability including 225 adults with challenging behaviour.
• There are an estimated 4,290 people aged 65 years and over in West Sussex who have a learning disability including 1,160 over the age of 80. With advancing age there is a predicted increase in the incidence of dementia with an estimated 90 people in the current population. There is also an increase in the need for services for people with long term health needs and/or physical disabilities as the population ages.
• Predicted population of 30,360 18–64-year-olds with impaired mobility; 4,660 with severe personal care needs, 325 visual impairment and 3,310 with severe hearing loss.
• Current population projections show little growth in the 16-64 age group in West Sussex between 2025 and 2040. Social care demand in the 18-64 age group will be driven by an increased prevalence of disability and/or an increased life expectancy of younger people born with or who have acquired a disability at a younger age, and not population growth.

4.3.2 Demographic Profile of Current Customers

• In the 2021 Census, 15.8% of the West Sussex population identified as a minority ethnicity (i.e., any ethnicity other than the majority White British group). This compares to 88% of current customers with a lifelong disability identifying as White, 5% are Asian, 3% Black and 3% Mixed or multiple ethnic groups.
• In addition, there are population variations within the districts in particular Crawley where 38.2% of the population identifying as a minority ethnicity. The most common minority ethnicities in Crawley were Asian or Asian British ethnicities (15.4%, equivalent to around 18,200 people), followed by the Other White ethnicity. Within Arun, most of the population who are not White British belong to other White ethnic groups (6.3%).
• Analysis of the 1088 customers located in the North of the County, indicates that 6% are Asian, 3.5% Black and 2.5% are of a Mixed or Multiple ethnic groups. The Council acknowledges that further work is required to address service gaps and ensure services are able to meet the range and diversity of need in our local population.
• An age profile of current customers indicates the majority of our customers are within the 50-65 and 18-34 age ranges (see Figure 2).

4.3.3 Use and Demand for Services

• The total number of adults with lifelong disabilities has increased by 3.61% between 2020 and 2024 as illustrated in Figure 3 below.

Table note: Each number is a snapshot figure taken from a day in first week in January of that year.

• Within the above figures, an analysis of diagnoses recorded on our databases indicates a particular increase in Autism (20%) for the 16 to 24 age group.
• Although numbers have remained fairly stable, costs have increased significantly This is particularly for adults with other lifelong disabilities in non-residential services (see paragraph 4.1 above).

4.3.4 Projected Increases in the Population of West Sussex

Data from the Projecting Adult Needs and Service Information System.

• The population of adults with a learning disability is expected to rise by almost 11% between 2020 by 2040 with a 37% increase predicted by 2040 in adults with a learning disability aged over 65.
• For working age autistic adults (18-64 years) the projected increase is 2.97% between 2020 and 2040. There is however an increasing cohort of young autistic people presenting with significant and complex behavioural needs.
• The number of working age (18-64 years) people projected to have a physical or sensory impairment is projected to increase by 2.39% between 2020 and 2040. This includes people with a physical disability that impairs mobility, a serious personal care disability, serious visual impairment, or severe hearing loss.
• Some districts are predicted to experience higher levels of population growth. e.g. Crawley, Horsham, Chichester and Worthing over next 20 years. Arun, Adur and Worthing already contain a slightly higher proportion of residents with lifelong disabilities in receipt of long-term support.
• It is important to note the above projections are for the entire population and that most people with a disability will be able to live independently in the community without the need for social care funded support. Projected numbers of individuals requiring a social care service are shown in 4.4 below.

4.3.5 Life Expectancy

• Over the last 20 years life expectancy has increased, although the rate of improvement started stalling in the early 2010s. In the most recent years small decreases in life expectancy have been observed, in part due to the COVID-19 pandemic.
• However healthy life expectancy (i.e. the average number of years a person would expect to live in good health) has not increased, it has fallen for both men and women. This means that the period of life spent in poor health has increased. This has implications for the individual, community, wider economy and demand for health and care services.
• People in the least deprived areas of West Sussex live on average, 6 years longer than those living in the most deprived areas.
• There are groups of very high vulnerability who are at a higher risk of poorer health outcomes such as people with severe mental illness, children in care, people who are homeless and people with multiple complex needs.
• The top ten risk factors for disability adjusted life years identified for West Sussex in 2021 identified smoking, high body mass index and dietary risk as the top 3 risk factors (from the West Sussex JSNA-2024).
• All of these factors reinforce the important role that social care and health services can play in maintaining good physical and mental well being.

4.3.6 Hospital Admissions and Placement Breakdowns

• The NHS learning disability and autism programme requires each local area to establish a register of people with a diagnosis of learning disability and/or autism who are an inpatient or at risk of a hospital admission due to a mental health crisis.
• Within West Sussex, there has been a downward trend in the number of hospital admissions for adults with a learning disability. As of October 2024, there were 7 inpatients with a learning disability 4 of whom are due to be discharged 2024/25 plus one long stay inpatient who is a delayed discharge. In addition, there were 6 people with a learning disability identified to be at an immediate risk of a hospital admission on the local register.
• For 17 autistic adults in West Sussex, there were 17 inpatients and 44 identified to be at risk of an unplanned hospital admission. This represents a 50% increase in the number of inpatients with an autism diagnosis since 2022 highlighting increased complexity of need for autistic adults.
• Whilst specific data is not currently available, operational staff and providers in West Sussex have found that placement breakdown remains an important issue to address as this particularly impacts negatively on outcomes for individuals and on the health and social care system as a whole. Stakeholders have highlighted the need for appropriately trained and skilled staff to support people with behavioural needs and complex health conditions to avoid placement breakdown. Access to short-term emergency placements could also provide an alternative to a hospital admission in some instances.

4.3.7 Older People with a Learning Disability

• The learning disability population are aging and with advancing age there is a predicted increase in the incidence of dementia with an estimated 90 people in the current population. There is also an increase in the need for services for people with long term health needs and/or physical disabilities as the population ages.

4.3.8 Service Closures and New Services in Development

• Since April 2023, a total of 9 services have closed within West Sussex, 8 residential care homes and 1 supported living service providing a total of 111 beds. Six of the closures have been large residential care homes with over 6 registered beds.
• The Council is proactively engaging the market regarding new developments to promote a steady supply of new supported living services that is needed. As of October 2024, 5 new supported living services (18 units) are being mobilised with a further 17 currently in the pipeline.
• To support a sustainable market and promote collaborative working, providers should contact us at an early stage regarding any new developments, service remodelling or significant changes to services that are being considered.

4.4.1  As at November 2024, there were a total of 3,543 care packages in place for adults with lifelong disabilities, 2359 for adults with a learning disability and 1184 for adults with physical and/or sensory disabilities, autism.

4.4.2  This includes 925 customers in receipt of Direct Payment, 542 residential and nursing care home placements and 1,617 ‘non-residential’ placements that include 868 Supported living, 450 customers using day opportunities, Shared Lives services and Extra Care.

4.4.3  Based on current service trends and demand, we estimate a 1% increase per year in the total number of customers with lifelong disabilities requiring long term support and project a potential increase of 183 from 3,578 to 3761 from 2025 to 2030 (see Figure 4 below).

4.4.4  We anticipate that at least 30% of customers will continue to have their needs met through a Direct Payment or through other packages of care. Based on the projected increases in customers and current supply trends, we estimate a potential demand for an additional 116 placements for adults with lifelong disabilities by 2030.

4.5.1  We will always require a diverse mix of high-quality services that are flexible and responsive to meet future needs.

4.5.2  Based on the above population projections, we estimate that we will need by 2030:

• Residential care: We anticipate a minimum 10% reduction in residential placements by 2030 as the supply of alternatives such as extra care and supported living increase. Whilst residential care will be required for some people with high complex needs throughout their care journey, the Council wants to work in partnership innovatively to enable individuals living in residential care to maximise their potential and quality of life with an expectation for individuals to move through a pathway of care to greater independence when they are able to.
• Non residential care: Demand for supported living across the range of needs is expected to continue for adults with a learning disability and/or autism. Due to the aging population and increased acuity of need we anticipate a continued need for services for behavioural and/or autism needs and accommodation accessible for people with physical disabilities. Based on projected increases in the population and at least 10% reduced demand for residential care, we anticipate a further 170 non-residential placements will be needed by 2030.
• Day opportunities: Future demand for day opportunities will be driven by increasing complexity of need particularly for autistic adults and to provide respite during the day for people living with their families.  The Council would like to see a stronger emphasis on employment and skill development including travel training, being safe in the community and peer support.
• Respite and short breaks: We are in the process of developing a commissioning plan for respite to be published in the Spring of 2025 that will set out our future needs and demand and commissioning plans. Based on the feedback we have received so far, there is an unmet need for county wide provision across all age groups including young people with complex physical and behavioural needs that may include autism. Stakeholders have also identified a need for emergency and short-term placements for customers with high and complex needs to avoid unnecessary admissions to hospital.

4.5.3  Potential service gaps within each District and Borough in West Sussex we estimate by 2030 is shown in Figure 5 below.

4.6.1 Availability of and Access to Accommodation, Care, and Support

• Providers have highlighted the difficulty accessing accommodation that is suitable to meet the range of needs for individuals.
• Recruitment and retention of suitably skilled and experienced staff to meet the complexity of behavioural and physical health needs.
• Availability of a suitable vacancy at the ‘right time’ when a placement is needed can lead to service delays and at times an ‘over provision’ of a package of care.
• System and process issues – assessment, reviews, transition and funding arrangements can delay access to appropriate accommodation, care and support.

4.6.2 Retention of Care and Support Packages

Placements can breakdown when individuals have a mental health crisis, or the individual’s risks or behaviours can no longer be managed in the service. Some providers may not have had or have access to the right learning and development for their staff to be able to effectively manage people with complex and challenging needs. When placements break down, there is a lack of provision that can accommodate individuals with high and complex needs that could provide an alternative to an avoidable hospital admission.

4.6.3 Progression and Move On to Greater Independence

• The lack of an effective pathway to move through services can lead to individuals remaining in restrictive services for longer than they need to which also impacts on the ability of the market to meet needs of people who are waiting.
• Regular reviews of support needs have been cited by providers as a barrier to move on. There may also be a lack of awareness or an expectation of move on for adults with lifelong disabilities with concerns that individuals may face risks in general needs housing.
• There are also challenges in accessing mainstream accommodation options due to the lack of private sector landlords who will offer tenancies to individuals on welfare benefits and ability to access social housing.

4.6.4 Modernisation and Effectiveness of the Market and Provision

• To ensure services are sustainable new opportunities must include involvement of local commissioners. The Council is keen to engage and work with providers as early as possible in any development process to ensure new services provide support to meet our commissioning intentions set out below in 5.3. We are also keen to explore the remodelling of existing services to make best use of local resources and to maximise capacity in the local market.
• Technology Enabled Care (TEC) has the potential to increase independence for individuals whilst also reducing costs. However, the use of assistive technology is not well used locally, and its potential is not being maximised.
• Data and information - The Council and providers do not always have readily available data and information all parties need to review, plan and develop care and support services.
• Outcomes - current systems do not easily report on outcomes and there is limited information on fundamental measures such as progression through services and data on placement breakdowns.

This market position statement has been developed in partnership with the learning disability and autism partnership boards, the lifelong services provider forum and local professionals working in health and social care. These stakeholders have highlighted the importance of skilled staff, access to housing, healthcare and opportunities to learn skills, be active, build confidence and promote independence. Providers have also asked for clearer information on what is needed, consistent forms of contact, risk sharing and a common understanding of the above challenges that providers and the Council face.