Learning disabilities

A learning disability affects the way a person learns new things in any area of life.  It affects the way they understand information and how they communicate.  Learning disability can be defined as:

  • the presence of a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence, often defined as an IQ level of 70 or less), with;
  • a reduced ability to cope independently (impaired social functioning);
  • which started before adulthood, with a lasting effect on development.

People with a learning disability can have difficulty understanding new or complex information, learning new skills and coping independently.  A learning disability can be mild, moderate or severe. Some people with a mild learning disability can talk easily and look after themselves, but take a bit longer than usual to learn new skills. Others may not be able to communicate at all and may have more than one disability.

Adults with learning disabilities are one of the most vulnerable groups in society, experiencing health inequalities, social exclusion and stigmatisation.  In general, adults with learning disabilities have greater and more complex health needs than the general population, and often these needs are not identified or treated.  Life expectancy of this group is shorter than the general population.  Adults with learning disabilities often experience barriers to accessing healthcare services, and poor levels of care.  They are more likely to die from a preventable cause than the general population.  Health needs amongst adults with a learning disability are different to the general population.

There are about 1.5 million people in the UK with learning disabilities.

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Last updated: 2015-09-24 12:08:49
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1. What are the key issues?

  • The number of people with learning disabilities in need of support will increase over the next twenty years due to prevention of early death and rise in life expectancy.
  • Most people with learning disabilities are not known to social care services but may have a need for support in the future as their circumstances change.
  • Better outcomes for the individual and more cost-effective services can be achieved through increased choice and control in the provision of support.
  • People with learning disabilities and their families are subject to inequalities that disadvantage them as individuals and require increased long-term support.
  • People with learning disabilities are more likely to suffer from physical and mental health problems; die before the age of 50; and die from a preventable cause.
  • People with learning disabilities are vulnerable to abuse – so safeguarding is a central concern in the development and delivery of services.

 

Last updated: 27/06/13

2. What commissioning priorities are recommended?

2012/01
Develop services so that they can provide for the increase in the number of people with learning disabilities in need of support
due to the increased prevention of early death and the rise in life expectancy of people with learning disabilities.

2012/02
Work with partners to identify the large number of people with learning disabilities in the community that are not currently known to services
but who may have a need for support in the future.

2012/03
Manage an increasing demand for more individualised support within available resources.

2012/04
Tackle the significant inequalities for people with learning disabilities and their families
. The inequalities not only disadvantage people on an individual level but can contribute towards increased long-term support needs.

2012/05
Further engage with local people with learning disabilities, their families and carers
to identify issues and develop services to meet needs.

2012/06
Strengthen joint working
in Tees Valley and the North East to address strategic plans effectively. The NHS is a key funding partner and a joint approach across Tees will be required to commission appropriate local services to move away from out of area placements.

2012/07
Further develop the multi-agency Transitions Forum and Independent Specialist Provider panel
to contribute to an understanding of individual needs in shaping local provision. The Young People’s Funding Agency, local education funding managers and Further Education providers are important for establishing a range of local education provision that is accessible and supportive of people, including those with both learning disabilities and autism.

2012/08
Work with service providers to adapt and develop new models of support to meet the diversity, flexibility and efficiency required to support people well
. Tees, Esk and Wear Valleys NHS Trust will be a key partner in the development of specialist assessment, treatment and provision for people with complex and additional needs arising from learning disabilities and/or associated conditions.

 

Last updated: 27/06/13

3. Who is at risk and why?

A learning disability happens when a person’s brain development is affected, either before they are born, during their birth or in early childhood. Several factors can affect brain development, including:

  • the mother becoming ill in pregnancy 
  • problems during the birth that stop enough oxygen getting to the brain
  • the unborn baby developing certain genes
  • the parents passing certain genes to the unborn baby that make having a learning disability more likely (known as inherited learning disability) 
  • illness, such as meningitis, or injury in early childhood.

Sometimes there is no known cause for a learning disability. (NHS Choices, 2011)

Age
In older age groups there tends to be more women than men with learning disability due to higher female life expectancy.

Children and young people with learning disabilities are six times more likely to have mental health problems than other young people.

Gender
Males are more likely than females to have a mild learning disability (ratio 1.2:1) and severe leaning disability (1.6:1) (Emerson et al, 2001)

Men with a learning disability are more likely to work for more than 30 hours per week than women.

Socioeconomic status
Mild learning disabilities are associated with parental social class and family instability, but no such relationship is reported for severe learning disabilities (Emerson et al, 2001).

Ethnicity
Prevalence rates for severe learning disabilities are higher in South Asian groups in the UK, with rates approximately three times higher among 5-34 year olds compared to non-Asian communities (Emerson et al 1997).

Consanguineous marriages (usually defined as being related as second cousins or closer) increase the risk of having a child with learning disabilities.  In the Pakistani community in Britain it is estimated that 50-60% of marriages are consanguineous.

Other risks
Compared with the general population, people with learning disabilities:

  • have a lower life expectancy;
  • are more likely to die from respiratory disease;
  • are less likely to receive regular health checks from their general practitioner;
  • are more likely to be admitted to hospital as an emergency (50% compared to 31% of admissions);
  • have higher rates of epilepsy, gastro-oesophageal reflux disorder, sensory impairments, osteoporosis, schizophrenia, dementia, dysphagia, dental disease, musculoskeletal problems and accidents;
  • find it more difficult to access health services;
  • are more likely to suffer abuse and neglect;
  • have lower rates of smoking and harmful alcohol consumption;
  • have higher levels of obesity, lower rates of physical activity and worse diets.

Less than 2% of the general population has a learning disability, but 7% of prisoners and 23% of young offenders have an IQ below 70.  About one-quarter of offenders have learning disabilities or difficulties that interfere with their ability to cope with the criminal justice system (Prison Reform Trust, 2012).

 

Last updated: 27/06/13

4. What is the level of need in the population?

In January 2014 there were over 1,000 children with learning disabilities known to schools in Redcar & Cleveland.  The rate is higher than the rate seen in England and significantly higher than the North East average.

Children with learning disabilities, Tees, 2011

The number of clients (aged over 18 years) receiving services has increased from 385 in 2005/06 to 485 in 2011/12, a 26% increase over 7 years.  The rate of service provision in Redcar & Cleveland is above both England and the North East and is increasing more than national and regional rates (Source: NASCIS; RAP P1).

Clients with learning disabilities receiving services, R&C, 2005/06 to 2011/12

The data on service provision provides an indication of what types of services have been provided.  In Redcar & Cleveland, types of service provision are in proportion with England.  There has been some increase in all three types of service (numbers are rounded to the nearest 5).

Service type and learning disabilities, R&C, 2008/09 to 2011/12

Estimates of the expected number of people with learning disabilities (Projecting Adult Needs and Service Information, PANSI) can be compared with numbers on general practice registers and those receiving services known to the local authority.  In Redcar & Cleveland, the number on general practice registers and those receiving services are similar to the expected number with moderate or severe learning disabilities.  It is likely that not all people identified will require services, but 70% of those estimated to have learning disabilities currently don’t receive services in Redcar & Cleveland.

Estimated and recorded rates of learning disability, Tees, 2010/11 and 2012

In Redcar & Cleveland, 60% of adults known to the local authority are in settled accommodation.  The accommodation status of one-fifth is unknown.

Accommodation and learning disabilities, Tees, 2010/11

The proportion of adults with learning disabilities who are in employment in Redcar & Cleveland is similar to the rate seen nationally.  About one-in-thirteen adults with learning disabilities in Redcar & Cleveland is in paid employment.

Employment and learning disabilities, Tees, 2010/11

In Redcar & Cleveland about 60 people with learning disabilities (rounded to nearest 5) were referred to safeguarding teams in 2010/11.  The rate of referral for abuse of people with learning disabilities in Redcar & Cleveland is above the England rate, but the difference is not statistically significant.

Safeguarding and learning disabilities, Tees, 2010/11

A comprehensive profile of learning disabilities is available from the Learning Disabilities Observatory.  The following chart summarises the data available.

Learning disabilities profile, Redcar & Cleveland, 2012

 

 

Last updated: 18/01/17

5. What services are currently provided?

Assessment and care/support management
Redcar & Cleveland Borough Council maintains a dedicated adult learning disability social work team for assessment and support planning.  Two social workers are identified for autism and work with people where that is the predominant need alongside a learning disability. This team also includes an Employment Link post to support people through education and training into work. The NHS provides assessment criteria for health funding contributions. The local authority contributes towards a Tees Forensic Learning Disability Service. Once packages of support are in place, many people are monitored through the generic Review Team.

Tees, Esk and Wear Valleys NHS Trust (TEWV) provide specialist assessment and treatment in the community through the Community Nursing Team and associated professional support services.

Health
The health inequalities faced by people with learning disabilities were recognised by Valuing People (DH, 2001) and measures are implemented locally through the South Tees Health sub-group. A number of local measures have been put in place to address these inequalities, promote good health and increase life expectancy. TEWV have a Health Facilitation Team to promote individual Health Action Plans that are linked to a Direct Enhanced Service from local GPs who offer Annual Health Checks. The Transitions Health Facilitator aims to ensure early health promotion and continuity of health care into adulthood.

James Cook University Hospital has a learning disability liaison nurse who assists with access to facilities and support to recognise the reasonable adjustments that may be required for people to receive treatment. The accessibility of health services is also addressed by both acute and primary care liaison nurses.

TEWV operate residential assessment and treatment services in Redcar & Cleveland. In very few cases, specialist out of area hospitals may be used to provide services that are not available locally.

Accommodation and support
There are 131 beds in residential care homes within Redcar & Cleveland, of which 81 (62%) are occupied by residents of the borough, 35 (27%) are occupied by people from outside the borough and the remaining 15 (11%) are currently vacant. However, 36 people from Redcar & Cleveland are currently accommodated in residential care homes outside the borough.

A number of local supported living schemes have been established providing accommodation and support in individual tenancies.

The local authority operates day services from 6 community bases in Redcar & Cleveland and there are several independent sector organisations offering local day opportunities through the use of direct payments. Day services to support people with complex health conditions are currently provided by TEWV at Kiltonview and The Orchard.

Overnight respite support for family carers is available from the local authority and TEWV (for people with complex health conditions). There are several alternative options being chosen by people through the use of individual budgets.

The local authority and the NHS commission support from Skills for People to enable people with learning disabilities to be actively involved in local decision-making forums that address inequalities. A service is also commissioned from Redcar Real Opportunities Centre to promote independent living skills and this is linked to an information and shopmobility service in the community.

Education, training and work
There are two special schools in Redcar & Cleveland for children and young people with special educational needs that cannot be best met in mainstream schools.

There has been a significant reliance on out of area post-school educational and residential placements to meet the needs of people with complex support needs whose support could not be provided locally. There is a focus on developing alternative local provision that can utilise the resources that were previously used outside of the area. A significant number of the people who go out of Redcar & Cleveland have a learning disability and autism.  Work is underway to gain autism accreditation for local further education providers so that more people can be supported appropriately to gain qualifications and life skills training.

A regular multi-agency transitions forum meets to oversee the progression of young people aged 14-25 and ensure that appropriate developmental opportunities are available to meet their needs and aspirations.

A local authority service aimed at supporting people in education and training towards work operates from Upsall Hall.

Carers
Carers Together is a local organisation that supports carers in their role. Family carers provide high levels of support to people with learning disabilities, often well into adulthood. There is formal recognition of the role of carers through assessments and allocation of resources through carers’ personal budgets.

There are several people with learning disabilities who live with older family carers who may not have developed plans for continued support when the carer is no longer in a position to continue.

 

Last updated: 27/06/13

6. What is the projected level of need?

The number of adults forecast to have a learning disability is set to decrease from 2012 by 5.7% in 2020 and by 12% in 2030.  The number of working age adults with a moderate or severe learning disability is forecast to decrease similarly.  However, there is likely to be a rapid increase in people aged over 65 with moderate or severe learning disabilities.

Forecast learning disability changes, Redcar & Cleveland, 2012 to 2030

Forecast numbers of people with learning disabilities, R&C, 2012 to 2030

 

Last updated: 27/06/13

7. What needs might be unmet?

The majority of people with learning disabilities are not currently known to services. As there is a close correlation between the numbers of people with moderate and severe learning disabilities and the numbers of people known to services, the people not known are likely to be predominantly thosee with mild learning disabilities and higher levels of social functioning. These people may live in the community with natural support and may only seek further assistance if their condition becomes more complex or if their support networks within the community change. There are also expected to be small numbers of people with moderate or severe learning disabilities who are supported in the community and only become known to services when family carers become unable to maintain their role.

Information about people with learning disabilities in Redcar & Cleveland is incomplete and a detailed mapping exercise to increase understanding of the circumstances of local people would assist with strategic planning.

There is currently a lack of support for people with more complex health needs that is able to offer access to community-based resources.

 

Last updated: 27/06/13

8. What evidence is there for effective intervention?

NICE guidance

Autism in children and young people (CG128)

Autism in adults (CG142)

 

Valuing People (DH, 2001) set out the Government’s commitment to improving the life chances of people with learning disabilities, through close partnership working to enable people with learning disabilities to live full and active lives.

Valuing People Now (DH, 2009a) retained the principle outlined in Valuing People that people with learning disabilities are people first, and re-emphasised the need for agencies to work together to achieve the best outcomes for people with learning disabilities.

Death by Indifference (MENCAP, 2007) detailed six cases believed to demonstrate institutional discrimination towards people with learning disabilities within the NHS, leading to shortcomings in care received that ultimately resulted in the death of the patients.

Healthcare for all (DH, 2008), the report of the Independent Inquiry into ‘Death by Indifference’ (MENCAP, 2007) concluded that people with learning disabilities appear to receive less effective care than they are entitled to, with evidence of a significant level of avoidable suffering and a high likelihood that deaths are occurring that could be avoided.  A total of 10 recommendations were made, all of which were accepted by the Department of Health in Valuing People Now (DH, 2009a).

Six Lives (Parliamentary and Health Service Ombudsman, 2009), considered the cases in ‘Death by Indifference’ highlighted some significant and distressing failures in health and social care services, leading to situations where people with learning disabilities experienced prolonged suffering and inappropriate care.  The report required all NHS and social care organisations to review:

  1. the effectiveness of local systems to enable understanding and planning to meet the needs of people with learning disabilities 
  2. the capacity and capability of services to meet the complex needs of people with learning disabilities. 

 

The Six Lives progress report (DH, 2010a) looks at the progress made by NHS and social care organisations in implementing the recommendations of the ‘Six Lives’ report.

The Mansell Report (DH, 2010b) highlights the most important parts of planning and delivering support for people with the most complex needs.

Valuing Employment Now (DH, 2009b) sets out the government’s strategy to improve employment opportunities for people with learning disabilities.

Equal access? A practical guide for the NHS: creating a Single Equality Scheme that includes improving access for people with learning disabilities (DH, 2009c) is a guide that supports the NHS to include people with learning disabilities in their equality schemes, with practical examples of reasonable adjustments to achieve equality of access.

World Class Commissioning for the health and wellbeing of people with learning disabilities (DH, 2009d) supports commissioners to meet the needs of people with learning disabilities, and ensure they are fulfilling their duty to promote equality.

Raising our sights: services for adults with profound intellectual and multiple disabilities (DH, 2010b) highlights the most important parts of planning and delivering support for people with the most complex needs.

The Learning Disability Observatory was established in 2010 and aims to provide better, easier to understand information on the health and wellbeing of people with learning disabilities.  By collecting information across England, it will help health and social care commissioners and providers to understand better the needs of people with learning disabilities, and their families and carers. The Observatory examines the data of the national learning disability self-assessment framework (LDSAF).

 

Last updated: 27/06/13

9. What do people say?

Working Together for Change has been used to get the views of local disabled people and people with autism. Many of the themes identified could be expected to be common to people with learning disabilities, but they may not truly represent the most significant priorities. A systematic collection of data from reviews would assist in undertaking a Working Together for Change approach in future to support better data collection.

The Learning Disability Parliament has been meeting weekly since April 2011. To ensure that the parliament is representative of people from Redcar & Cleveland, including people with high support needs, a series of road shows were held. The road shows helped people to gain information about the parliament, its aims and objectives, learn about their rights and vote for the issues that the parliament would work on over the coming year.  The four themes that people felt were the most important are:

  • Keeping safe/hate crime
  • Friends and relationships
  • Keeping healthy
  • Good support

 

Last updated: 27/06/13

10. What additional needs assessment is required?

There is a need for more complete data on the current local position and projections for the future.

There is an increase in the number of people with learning disabilities in need of support due to the increased prevention of premature death and the national rise in life expectancy.

There are many people with learning disabilities in the community who are not currently known to services but who may have a need for support in future.

 

Last updated: 27/06/13

Key Contact

Name: Derek Birtwhistle

Job Title: Commissioning Lead - Disabilities

e-mail: derek.birtwhistle@redcar-cleveland.gov.uk

phone:01642 771500

 

References

National strategies and plans

Department of Health (2001). Valuing People: a new strategy for learning disability for the 21st century.

Department of Health (2009a). Valuing people now: a new three-year strategy for people with learning disabilities.

 

Local strategies and plans

 

 

 

Other references

Brugha T, Cooper SA, McManus S et al (2012). Estimating the Prevalence of Autism Spectrum Conditions in Adults.

Department of Health (2008). Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities.

Department of Health (2009b). Valuing employment now - real jobs for people with learning disabilities.

Department of Health (2009c). Equal access? A practical guide for the NHS: creating a Single Equality Scheme that includes improving access for people with learning disabilities.

Department of Health (2009d). World class commissioning for the health and wellbeing of people with learning disabilities.

Department of Health (2010a). ‘Six lives’ progress report.

Department of Health (2010b). Raising our sights: services for adults with profound intellectual and multiple disabilities.

Emerson, E and Hatton, C (2004). Estimating Future Need/Demand for Supports for Adults with Learning Disabilities in England.

Health and Social Care Information Centre (2009). Autism Spectrum Disorders in adults living in households throughout England: The Report from the Adult Psychiatric Morbidity Survey 2007

Learning Disabilities Observatory. http://www.improvinghealthandlives.org.uk/

MENCAP (2007). Death by indifference.

MENCAP (2012). Death by indifference: 74 deaths and counting.

NHS Choices (2011). What is a learning disability?

NHS Information Centre (2010). Access to healthcare for people with learning disabilities.

NICE (2011). Autism in children and young people.

NICE (2012). Autism in adults.

Parliamentary and Health Service Ombudsman (2009). Six Lives: the provision of public services to people with learning disabilities.

Prison Reform Trust (2012). Bromley Briefings Prison Factfile: November 2012.

Public Health England (2015). The determinants of health inequities experienced by children with learning disabilities.