The forgotten story of social care

LD Cohort Six: Individuals with high needs and whose packages of care are increasing significantly

consistent and quality support staff options, and with health partners to ensure their specialist input is involved in support and any potential joint funding.

this programme as “accidentally recreating hospitals in the community”. This will often require working across social work and commissioning teams to identify appropriate housing options with local providers to ensure

Liam is 27 years old and has a moderate learning disability and autism. He loves going to the swimming pool at the local leisure centre and playing games on his tablet.

LD Cohort Four: Individuals with low levels of need and whose package of care is escalating in cost

Five years ago, Liam’s family were finding it hard to support him as he became older, and after a particularly challenging summer for Liam he was briefly sectioned and admitted to a mental health unit. This was very difficult for Liam, but he was able to leave after nine months and move into supported living where he received 1:1 support through most of the day. During the first year, the support provider raised concerns to the local authority and requested that his support be increased to 2:1 for certain periods. In the second year, the nighttime support increased to waking night support after an additional request. With challenges around personal space in the flat due to the level of extra support staff, Liam recently moved into a larger property with more space for the extra staff.

Joe is 32 years old and lives in a shared supported living house with three other men. Whilst he enjoys time to himself, the housemates enjoy playing video games together and going on days out. They eat together every night and share the house jobs. Joe receives some 1:1 support for managing his finances, but most of his support is shared across the housemates for cooking, food shopping, and keeping the house clean.

When Joe first moved into the house, it allowed him to feel like his own boss and he has loved the freedom it has given him. However, over the last couple of years he has been feeling a bit low and bored, which has resulted in him falling out with staff and with his housemates. His social worker has increased his support to attend a local day service three days a week to help him explore new activities.

How can improved outcomes be delivered for this cohort? Individuals in this cohort tend to have the highest level of support needs. This is often both in terms of the severity of their disability (for example, being non-verbal), but also their experience and response towards support (such as a history of exhibiting aggression towards support staff). They are also likely to experience comorbidities, such as a learning disability with autism, a mental health condition, or physical disabilities. A significant proportion of individuals in this cohort will have experienced a long-term stay in a hospital unit, and this would have been the main support model for this cohort 20+ years ago. As a reflection of advancements in medical care, this cohort’s life expectancy will be significantly longer than it used to be. This positive change, however, does create a new role for adult social care in terms of how it supports these individuals. Delivering optimum outcomes for individuals in this cohort in general requires finding a balance between the relatively high levels of support required for ensuring safety, with ensuring that disproportionate levels of 2:1, 3:1 or more support that could severely limit the individual’s personal space and autonomy are avoided. This was referred to by some stakeholders during engagement for

Why is this cohort a priority for improvement? In this cohort, average packages of care are typically very high, and package costs have been escalating significantly. As a result, this cohort appears to be a high priority for potential improvement activity. Individuals in this cohort typically receive a care package with an average weekly cost of £3,316 per person. This has increased £1,299 per week per year from 2021 to 2024. Costs range from £2,266 per week in one participating authority to £5,224 in another participating authority. What are the characteristics of individuals in this cohort? Based on the data analysed for this programme from the participating authorities, this cohort accounts for 6% of all individuals with a learning disability, and 19% of learning disability expenditure. 35% of individuals in this group are aged 26–39, 25% are aged 40–55, 18% are aged 18–25, 16% are aged 56–65, and 6% are aged 65+. 41% of individuals in this group live in supported living accommodation, 26% receive residential care, and 19% are in receipt of direct payments. People aged 56+ are twice as likely to be in residential placements as people aged 18–39.

What are the characteristics of individuals in this cohort? Based on the data analysed for this programme from the participating authorities, this cohort makes up 14% of all individuals with a learning disability, and accounts for 10% of learning disability expenditure. The proportion of working age and lifelong disabled individuals in this cohort ranged from 2.7% in one participating authority to 15.3% in another. The most represented age group is individuals aged 26–39 who account for 34% of the cohort, followed by individuals aged 40–55 who account for 22% of the cohort. The most common support that individuals in this cohort receive is community supported living (30%), followed by direct payments (27%), and day support (18%).

Why is this cohort a priority for improvement? In this cohort, the average cost of care for individuals is similar without much variation, but with significant levels of escalation in cost each year. As a result, this cohort appears to be a high priority for potential improvement activity. The average weekly care package cost is £722. The cost of care packages has risen annually, increasing by £167 per week on average over the period from 2020/21 to 2023/24. For 80% of authorities, the average cost of packages of care for individuals in this cohort was close to £722 per week, but the remaining few authorities showed a range of £445 to £862 per week.

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