As well as providing for the most basic needs of those with learning disabilities, national and local policy requires that local provision helps people to be independent, self-producing and socially connected.
In 2016, Reading Borough Council (RBC) published ‘Reading Borough Council Strategy for People with Learning Disabilities’ outlining the key priorities for the delivery of support for Learning Disabled people in Reading and incorporating the priorities expressed by the Learning Disability Partnership Board, the Corporate Plan and the Adult Social Care Strategy. The strategy was informed by a needs analysis which also forms the basis for this summary.
A learning disability comprises reduced intellectual ability with the need for significant assistance with day-to-day living, (known as ‘social and adaptive functioning’). These needs will differ between individuals but can include the need for help with eating and drinking or keeping clean and warm; or with coming up with a way of resolving ‘real-life’ problems like shortage of money, emotional or health problems, disagreement with other people or a wider social problem like litter (Mencap, 2015; British Psychological Society (BPS), 2000). The term ‘learning difficulty’ is sometimes used interchangeably, but can also include those with dyslexia, dyspraxia or attention deficit disorder (ADD) and does not necessarily denote reduced intellectual ability (British Dyslexia Association, 2016).
A learning disability develops when brain development is affected in an unborn baby or following an illness (such as meningitis) or injury in early childhood. Certain conditions, such as cerebral palsy and Down’s syndrome, are commonly associated with learning disability and there is a high prevalence of learning disability amongst those with autism and those with epilepsy (NHS Choices, 2015). Some diagnostic tests for genetic conditions are carried out during pregnancy, but in many cases a diagnosis will be given after birth, usually as a result of a parent or a professional working with the child noticing that they are not developing in the same way as other children their age. In some cases, it may be difficult to receive a diagnosis or a diagnosis may never be given (Mencap, 2016; NHS Choices, 2016).
Some individuals with a learning disability may demonstrate ‘challenging behaviour’. Challenging behaviour cannot be diagnosed, but is often the result of personal interaction with the environment and can include aggression, self-injury, withdrawal or disruptive or destructive behaviour. It may bring the person into contact with the criminal justice system. Challenging behaviour is most common in teenagers and people in their early 20s and occurs more frequently in particular settings (for instance, 5-15% of people with a learning disability demonstrate challenging behaviour in education, health and social care settings and 30-40% in hospital settings) (NICE, 2015a).
Some research suggests that adults with learning disabilities may have difficulty meeting their healthcare needs (Balogh, Oullette-Kuntz, Bourne, Lunsky and Colantonio, 2008; Mencap, 2007), although local responses to questions about self-reported health suggest that the proportion of people with learning disabilities reporting poor health is similar to the general population (Reading Borough Council, 2016).
The Projection of Adults Needs and Service Information (PANSI) estimates that 590 people in Reading had a moderate or severe learning disability in 2015, with the largest proportions aged 25-34 and 35-44 (see figure 1). In the next 14 years, PANSI predicts increases in older age groups, (which may reflect the ageing of those in the current ‘peak’ age groups), as well as a significant increase in the number aged 18-24. A predicted increase amongst those in the younger age group is supported by Reading Borough Council’s own forecast, based on data held by the Children and Young People’s Disability team, of an increase in the number of 18-20 year olds who are likely to be accessing Adult Social Care by 2020.
Figure 1. Reading adult residents predicted to have moderate or severe learning disability
Source: Reading Borough Council Strategy for People with Learning Disabilities, Part 2 – Needs Analysis
There is some evidence to suggest that there may be a higher prevalence of severe learning disability amongst those from Pakistani and other South Asian ethnic groups (Emerson et al, 2010; Mencap). Since Reading has a higher proportion of Pakistani and South Asian residents than the England average, this may have an impact on prevalence estimates in Reading.
While comparing PANSI estimates to the total number known to adult social care in Reading (441) suggests that 75% are receiving care, the numbers known to services in the 18-24 and 35-44 age groups are lower than expected. Conversely, the numbers in older age groups are much closer to the PANSI predictions. This clearly suggests that older individuals who are eligible for services are more likely to be known to adult social care, while those who are not currently eligible are not yet known (Reading Borough Council, 2016).
Figure 2. Percentage of adults with learning disability as estimated by PANSI known to Adult Social Care in Reading.
Source: Reading Borough Council Strategy for People with Learning Disabilities, Part 2 – Needs Analysis.
National Adult Social Care policy takes a capability and asset focused approach to helping those with social care needs to achieve fulfilling and active lives. To meet these criteria, care provision needs to go beyond providing for the most basic needs, and ensure that people are able to be independent, self-efficacious and socially connected. For those with learning disabilities, there is a particular focus on people being able to access employment and living in their own home (Department of Health, 2014)
Performance data from the Adult Social Care Outcomes Framework (ASCOF) suggests that a smaller proportion of people with learning disabilities were in employment in Reading than in England or amongst areas considered similar to Reading (5.4% in Reading compared to 6.0% in England and 7.7% in similar local authority areas) and a smaller proportion were in stable accommodation than in England or amongst areas similar to Reading (Figures 3 and 4).
Figure 3. Percentage of adults with learning disabilities in employment in Reading
Source: Adult Social Care Outcome Framework
Figure 4. Percentage of adults with learning disabilities in stable accommodation in Reading
Source: Adult Social Care Outcome Framework
The most significant service provisions for learning disabled individuals in April 2015 were supported living, day services and residential care (Reading Borough Council, 2016).
Responses to the ASCOF Personal Social Services Adult Social Care Survey 2014-15 show that most learning disabled respondents in Reading felt that care and support services helped them to have a better quality of life (96% compared to 92% of adult social care users in England) and more control over their daily life (89% of learning disabled in Reading and all adult social care users in England) and helped them to feel safe (92% compared to 85% in England). They found it easier than other adult social care users to access information about support, services and benefits and (29% compared to 23% of all social care users in Reading and 26% of all England) and were less likely to ‘top-up’ their care (17% compared to 37% of adult social care users in Reading and 36% in England).
National Adult Social Care policy takes a capability and asset focused approach to helping those with social care needs to achieve fulfilling and active lives. For those with learning disabilities, there is a particular focus on people being able to access to employment and living in their own home (Department of Health, 2014).
Reading Borough Council’s Strategy for People with Learning Disabilities sets out a vision for the local authority to:
“maximise [people with learning disabilities’] opportunity for inclusion within the local community and support them to grow and develop as individuals…We will take a strengths based approach to our work, taking as a starting point what people can achieve now for themselves, what they can achieve with support and, where possible, what they could achieve independently in the future”
NICE guidelines for preventing challenging behaviour amongst people with a learning disability recommends regular health assessments, assessment of the behaviour, engagement in personalised and meaningful activities and minimal use of any restrictive interventions and anti-psychotic medication (NICE, 2015b)
While social care services for adults with learning disabilities are popular and well-used, there are continuing challenges to ensure that individuals have choice and control over their care and are fully supported to enjoy a fulfilling and meaningful life. Meeting this need is likely to require changes to delivery of Direct Payments and improvements to the ways in which people with learning disabilities are supported to connect with their communities, gain and sustain employment, and live independently in their own homes.
At the same time, pressure on service provision can be expected to increase. The number of younger people with learning disabilities becoming eligible for adult social care services is expected to increase in the next 5-10 years, while the current large cohort aged 25-44 will become older and are likely to have additional care needs.
Research suggests that people with learning disabilities may find it more difficult to access health services (Balogh et al, 2008). Some of the reasons behind these difficulties may be particularly challenging for more deprived households or where English is not first language. Furthermore, those with lower incomes have less recourse to privately funded care services and are likely to be more dependent on publicly funded social care services.
Communication needs, with some people unable to communicate through speech, may affect ability to receive an adequate health service, and this may be compounded by existing deprivation. In addition, some may have struggled to receive a diagnosis making it more difficult for them to access the support they need.
Balogh, R, Ouellette-Kuntz, H, Bourne, L, Lunsky, Y and Colantonio, Y. (2008). Healthcare services for adults with a learning disability. Cochrane Database of Systematic Reviews, 4, Art no. No.: CD007492. DOI: 10.1002/14651858.CD007492.
British Dyslexia Association. Dyslexia and Specific Learning Difficulties in Adults.
British Psychological Society (2000). Learning Disability: Definitions and Contexts. British Psychological Society, Leicester. Available at: http://www.bps.org.uk/system/files/documents/ppb_learning.pdf (Accessed 15th February 2016).
Department of Health (2014). Adult Social Care Outcomes Framework 2015/16. DoH, London. (Accessed 16th February 2016).
Emerson, E, Hatton, C, Robertson, J, Roberts, H, Baines, S and Glover, G. (2010). People with Learning Disabilities in England 2010. London: Department of health.
Mencap. Diagnosis after Birth. (Accessed 15th February 2016).
Mencap. What is a learning disability?Mencap: The voice of learning disability. (accessed 10th February 2016).
Mencap. More about learning disability. (see ‘Future numbers of adults with a learning disability). (accessed 1st March 2016).
Mencap (2007). Death by Indifference. Mencap, London.
NHS Choices. Children With Learning Disability. Available at: http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Childrenwithalearningdisabilityhome.aspx (Accessed 15th February 2016)
NICE (2015a). Challenging Behaviour and Learning Disabilities: Prevention and intervention for people with learning disabilities whose behaviour challenges. NICE Guidelines NG11.
NICE (2015b). Learning disabilities: Challenging behaviour. NICE Quality Standard QS101.
Reading Borough Council (2016). Reading Borough Council Strategy for People with Learning Disabilities. Reading Borough Council, Reading.