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Learning Disabilities

Introduction

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.

What do we know?

Background

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).

Prevalence

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

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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.

Reach of Care and Support Services

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.

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Source: Reading Borough Council Strategy for People with Learning Disabilities, Part 2 - Needs Analysis.

Performance against National Indicators

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

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Source: Adult Social Care Outcome Framework

Figure 4. Percentage of adults with learning disabilities in stable accommodation in Reading

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Source: Adult Social Care Outcome Framework

What services are provided?

The most significant service provisions for learning disabled individuals in April 2015 were supported living, day services and residential care (Reading Borough Council, 2016).

  • 177 adults with learning disabilities were open to Supported Living services in April 2015. Supported living enables people with learning disabilities to live independently while receiving support with day-to-day living as they require. In April 2015, 34% of people with a learning disability receiving adult social care services in Reading were in receipt of a supported living service at a cost of £15-1900 per week. RBC notes that cost effectiveness is variable, with cost not always reflecting level of need. Some individuals may be offered a care package that dictates a minimum number of care hours and restricts choice of accommodation to a single provider, restricting both client choice and value for money.
  • 134 adults with learning disabilities were open today services, and a further 41 were in receipt of Direct Payments in April 2015. A range of grant-funded community day services are commissioned from external providers to support development of self-advocacy and empowerment, offering advice and information for emerging care needs and support to help people re-settle in their own homes. Some additional community services are paid for by social care service users through Direct Payments (personal budgets for social care), but take up of Direct Payments in Reading is low. In March 2015 only 9% of people with a learning disability were receiving a Direct Payment. For those who have taken up the facility, feedback from users suggests Direct Payments increase independence (especially avoiding entry into residential care), improves consistency of care provision, and helps people to plan their expenditure and the support they need. However, it was seen by most as complicated and restrictive of choice, and involved long waits (up to 12 weeks) for payments or care
  • Provision. RBC also provides an in-house learning disability day service that currently provides services on an individual basis and in groups of varying sizes to some 68 service users, mainly with profound and complex needs. The size of the in-house service has reduced considerably in the last ten years, as RBC has worked with external providers to increase the range of competitively priced services on offer elsewhere. A number of older people with learning disabilities attend day services for older people.
  • 121 adults with learning disabilities were open to Residential Care services in April 2015. Reading has a lower proportion of learning disabled people living in residential homes than neighbouring boroughs, but pays a higher average weekly cost. The cost of residential services range from £620 to £3800 per week. The majority of learning disabled people in residential care are aged 45 or older, and more people aged 65 or older were open to residential care than Supported Living services. This may be related to wider care needs amongst older people. Alternatively, it may reflect relatively recent movement towards independence and community-living in recommendations for practice and care. The way in which care is understood to be most effective has developed since some older individuals' initial contact with social care, with increased emphasis on support to live in the community.

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 & Local Strategies

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)

What is this telling us?

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.

What are the key inequalities?

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.

References:

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.Available at http://www.bdadyslexia.org.uk/dyslexic/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. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/375431/ASCOF_15-16.pdf (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. 

See also:

Carers

Autism

Mental Health  

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