Learning Disabilities

Learning disability (LD) is a lifelong condition that starts before adulthood, which affects a person’s development resulting in a reduced capacity to understand new or complex information, to learn new skills or to live independently. People with a learning disability may take longer to learn things, often needing support to develop new skills; to be aware of risk; to understand complicated information; or to interact with others. 

‘Learning disability’ differs to ‘learning difficulty’. Whereas learning disabilities impact on learning and intelligence across all areas of life, a learning difficulty constitutes a condition which creates an obstacle to a specific form of learning, such as dyslexia, but a learning difficulty does not affect overall IQ. 

Nationally, there are estimated to be around 1.25 million people with a learning disability, accounting for 2.2% of the population. Individuals with a learning disability are among the most vulnerable people in society and so support for people with learning disabilities can keep them safe from abuse, neglect, and crime (including hate crimes). Support must always use the least restrictive intervention to allow people to take managed risks that are consistent with the outcomes they want to achieve. 

Loneliness affects many people in the UK, including those with a learning disability. 61% of disabled people report feeling lonely [Source: Sense] and 30.1% of 18-35 year olds with a learning disability spent less than 1 hour a day outside their home [Source: Mencap]. Lack of accessibility to venues and events, carers hours, lack of money, transport problems, and unemployment, can all contribute to loneliness which negatively impacts individuals’ health and wellbeing. Involving people with learning disabilities in society can help reduce stigma and benefit communities.  

People with a learning disability are likely to have co-existing conditions such as impaired mental health, autism, or physical disabilities, which contribute to difficulties in leading independent, fulfilling lives and maintaining good health. The outcome is that average age at death for people with a learning disability is 23 years younger for men, and 27 years younger for women, than the wider population (Source: LeDeR). Medical advances and improved diagnostics now means the number of people with learning disabilities is increasing over the medium to long term, particularly among older age groups (Source:  NICE).  

There are: An increasing number of people with LD; Budgetary constraints; Young people aging into adulthood; Consequences to the Transforming Care programme. Each of these are a factor leading to increasing complexities for the delivery of care. Transforming Care led to an increase in the number of people discharged from mental health inpatient care. “The government has now committed to closing 50% of inpatient beds by March 2024. This target is in the NHS long Term plan” (Source:  Mencap). 

A higher incidence of health inequality is recoded amongst people with a learning disability compared to other groups in society. Evidence also highlights significant inequalities between those people with and without a learning disability (LeDeR Annual Report, 2020). Compared to the general population, people with a learning disability are three to four times more likely to die from an avoidable medical cause of death. Most of these avoidable deaths occurred because timely and effective treatment was not provided.  Provision of Learning Disability Annual Health Checks is vital to identify health needs at the earliest opportunity. 

Enabling people with learning disabilities to develop independence is an aspect of leading a fulfilling life and reduces inpatient care. Some individuals require support to manage everyday activities -for others, it is providing assistance to increase skills and build on strengths. This enables people to provide themselves with dignified health and care behaviours, employment opportunities, financial management, independent living in their own choice of accommodation, and the prospect of become a valued member of their community. Relationships with family and friends are necessary for people with learning disabilities to reduce risks of social isolation and loneliness – common risk factors that can lead to inferior health outcomes. 

• The Care Act 2014
• Building the Right Support (Transforming Care Programme)
• LeDeR Policy
• NICE Guidance
  • NICE impact: People with a learning disability
  • Care and support of people growing older with learning disabilities (nice.org.uk)
  • Learning disabilities and behaviour that challenges: service design and delivery (nice.org.uk)
• NHS Long Term Plan
• National Disability Strategy
• LGA Supporting adults with a learning disability to have better lives framework

Using PANSI and POPPI data, it is estimated more than 14,000 adults with a learning disability currently live in Lincolnshire, with the number expected to increase to around 15,800 by 2035. However, 4,500 individuals are on the Learning Disability Register maintained by County GPs – only 32% of the 14,000 estimated from POPPI and PANSI. Of those who are registered, around 75% are in receipt of an annual LD Health Check, meeting the national NHS England target. 

Learning disabilities are often confounded with multiple physical and mental health conditions and so there is an increased risk of developing chronic conditions from genetic and lifestyle factors. Evidence suggests rates of numerous major diseases (heart failure, epilepsy, severe mental illness, diabetes and dementia) are higher in adults with learning disability than the wider population. Consequently, average life expectancy for people with a learning disability is significantly lower than for the general population. Continuing to encourage the take-up of Annual Health Checks for people with a learning disability is a high priority to support early identification of health needs and take steps to lower risk (e.g., through modifying health behaviours or medication). 

The number of people with a learning disability in Lincolnshire will continue to increase, in particular, the cohort of those aged over 65. Being medically better able to sustain life, complexity of needs will increase. The majority of patients that are in Lincolnshire’s Transforming Care cohort are people with complex needs. 

2,000 adults with a learning disability in Lincolnshire are eligible for adult social care and/or Continuing Health Care (CHC) support, commissioned by Lincolnshire County Council. This is in line with average figures across England. Several other Local Authorities and Integrated Care Board’s (ICB’s) commission adult social care and CHC from the same Lincolnshire-based care providers. Up to 45% of Lincolnshire residential and nursing care beds for adults with a learning disability are commissioned by non-Lincolnshire based commissioners. This means that there can sometimes be challenges in commissioning care locally for the people we support, particularly for those people with the most complex needs. 

Roughly 500-550 people with a learning disability are accommodated in Residential or Nursing Care provision provided by the Independent Sector and commissioned via Lincolnshire commissioners. Benchmarking information suggests that this is a slightly higher use of residential care than in similar Local Authority areas. There is continual need to develop additional community-based accommodation and care arrangements as an alternative to Residential and Nursing Care. 

Over 40% of the people in receipt of adult social care and/or CHC, facilitated by Lincolnshire commissioners, are accommodated with family, friends or in shared lives care. Family-based care arrangements play a vital role in helping many people with a learning disability live their lives to the full. Carer Support services, including Day Services and wider wellbeing services, help sustain these arrangements. 

Multi-agency collaboration to improve Outcomes for People with Learning Disability is led by the Mental Health, Learning Disability and Autism (MHLDA) Alliance in Lincolnshire. The MHLDA has a broad membership that includes Lincolnshire Partnership Foundation Trust (LPFT), Lincolnshire County Council (LCC), Lincolnshire Integrated Care Board (ICB), the Voluntary and Community Sector, District Councils, and the Office of the Police and Crime Commissioner. The MHLDA have adopted an overarching all-age prevention and early intervention approach to achieve key priorities which are: 

– Mental health promotion and developing an MHLDA inclusive society 

– Improving access to community-based services (to reduce need for more specialist services) 

– Minimising in-patient and residential care placements, especially out of county 

– Suicide Prevention 

– Delivering a sustained and MHLDA informed workforce 

In Lincolnshire, an integrated approach to commissioning, management and delivery of services for people with a learning disability is well established between health and social care partners. This arrangement includes a Section 75 Agreement, with pooled funding for the commissioning of services that support adults with a learning disability with their adult care and/or CHC needs. A close working relationship between health and social care colleagues ensures people have access to the services they need locally – including respite, accommodation and healthcare. The introduction of integrated health and social care budgets has supported a vision to offer greater choice, control and quality of life for people with complex needs. Work is being planned to develop lead commissioning arrangements for people with complex needs, which will facilitate the commissioning of more integrated care solutions for local people. 

A Joint Accommodation Strategy Group (JASG) has been established between the local authority and NHS Partners, working with district councils and housing associations. This key issue will ensure that people with learning disabilities have the opportunity to access appropriate accommodation within the community and are supported to maximise their independence and lead fulfilling lives. The JASG is working to improve accommodation and care for people with complex needs and developing services within Lincolnshire targeted to patients being discharged. The development of an Integrated Market Management Strategy for Residential and Nursing Care for people with complex needs is planned, alongside work that continues with commissioned providers and services to offer community supported living opportunities and a shared lives scheme. 

Through the local Transforming Care Partnership and related Plan, work continues to reduce the number of people with a learning disability who are admitted into inpatient services and to ensure, via timely Care and Treatment Reviews, people are safe, the care is evidence-based and appropriate, and that plans are in place for their future. The programme is developing services locally to deliver localised specialist support reducing a reliance on inpatient care and out-of-county services. 

Reducing health inequalities by providing an improved service offer to people with learning disabilities is a key priority. The recruitment of specialist Learning Disability teams/roles within the health service is underway. Health Liaison Nurses are specifically tackling health inequalities to make sure appropriate training and support about learning disability is available to staff, and that reasonable adjustments are being made to services. Recommendations from the LeDeR Report are being implemented to ensure the quality of health and care services for people with a learning disability improves to, ultimately, support a reduction of deaths from preventable conditions. Improved co-production approaches utilising “Experts By Experience” to help design and improve the service offer are in place. Commissioned services for Advocacy and Involvement continue, ensuring that people with learning disabilities have a voice and can shape the delivery of services. 

Strengths-based practice is becoming embedded across social care. This means working with individuals with learning disabilities to identify their personal interests and strengths, then build packages of support around those things, rather than focussing on perceived weaknesses. This work includes supported employment initiatives, and a working group to focus on increasing opportunities for those who wish to participate in volunteering and/or employment. The working group was successful in securing DWP Grant funding to support the development of supported employment opportunities for people with learning disabilities in receipt of Adult Social Care. 

Targeted interventions are being planned and implemented, across services, that identify digital and equipment solutions to support people to maintain and increase their independence. The Council continues to run a number of day service provisions across the county. An Improvement Plan is in place to replace or upgrade existing facilities. Day Opportunities services are commissioned from local care providers, giving additional choice and control over activities and services people with learning disabilities wish to access. The Day Opportunity Services play a vital role in supporting family-based care arrangements. 

Engagement with the Lincolnshire Learning Disability Partnership Board, and Speak Out leaders, highlighted employment as a key issue. Opportunities to gain employment remain limited for those with learning disabilities – there is a view that employers have limited understanding about learning disabilities. This means employers either do not make suitable or necessary adjustments to support people with learning disabilities, or they are unwilling to contemplate employing someone with a learning disability. Where people with a learning disability are employed, they often feel like there are not enough opportunities for progression, or to change roles, as there would be for those from the wider population. 

Improvements to ensure better awareness about learning disabilities is required. Training is required for health and social care service staff, and people with learning disabilities should play an active part in providing that training to guide the services they receive. 

The Learning Disability Partnership feel it is essential that people are included on their GP Learning Disability Register and complete a Learning Disability Annual Health Check. This will identify underlying medical conditions and can assist in the creation of a health plan to improve physical and mental wellbeing. 

People with a learning disability have increased vulnerabilities to the dangers of online scams and abuse and so require increased assistance; to confidently access community resources; to access suitable housing options in the community; to access increased support for staying safe. 

• It is estimated only 30% (4,500) of people with learning disabilities in Lincolnshire are known to health and social care services. Without having a learning disability correctly recorded with their GP, care may not be provided, leading to poorer health outcome. Those with a learning disability are encouraged to stress the importance of their GP recording this. 
• A review of LD Annual Health Checks is being completed. It shows people aged 14-35, particularly males, were less likely to attend – promotion of the scheme is planned to target this cohort. 
• Access to wellbeing services for adults with LD is extremely limited. Public Health commissioning leads and Social Care teams are looking at ways to increase access. 
• Increased support for family and friends of people with LD is required, in particular, for family members aged over 65. Without support the proportion of family-based care is likely to reduce. Emergency care may also be needed at times of crisis and support breakdown. 
• Less people with LD are volunteering and/or in employment in Lincolnshire than the national average. Initiatives are required to provide pre-employment and in-work support. A key emphasis on working with, and be supported by, the voluntary sector and local employers for employment projects to be successful. 
• The recognised national shortage of nursing staff includes those qualified and experienced in working with people with LD. The difficulties of recruiting and retaining care staff requires targeted workforce development – a strategic issue for care providers and service commissioners. 
• Securing and developing sufficient local market capacity to meet an increasing demand for Adult Social Care, and Continuing Health Care, for people with complex needs is vital. 
• More information is needed concerning people with LD entering the Criminal Justice System in terms of numbers and support that is provided to them. 

People with LD face many challenges trying to lead a fulfilling life and maintaining good health and wellbeing. Delivery of appropriate support from local health and social care services is imperative for people with LD whilst providing a commitment to promote independence. 

Work to reduce health inequalities for people with LD continues, in particular, focussing on life expectancy and avoidable deaths from treatable conditions. The service offer is being improved, better learning disability training is being rolled out to all health and social care staff at a national level, and our local health services are being assisted to make reasonable adjustments so they are accessible for people with LD and can offer timely and appropriate support. 

Key issues are being addressed to ensure people with learning disabilities are supported to be a valued part of their local community. Targeted interventions are being developed to support individuals to participate in volunteering and employment, digital and equipment solutions are being identified to aid communication and independency, and strength-based practices are being embedded across health and social care.