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.

This topic is linked with:

 

Last updated: 2016-08-08 10:27:19
[+] Expand all

1. What are the key issues?

  • Life expectancy for people with learning disabilities is increasing. It is known that people with a learning disability are significantly more likely than the general population to develop dementia.  Services need to be developed to meet the needs of older people with learning disabilities.
  • A review of the provision of diagnostic services for people with autism should be considered.
  • The needs of people with autism may be best represented with a tailored advocacy service.
  • Approximately 60 people with a learning disability or autistic spectrum condition are in care placements outside Middlesbrough.
  • Many people with learning disabilities want to work, but need assistance in finding paid employment.
  • People with learning disabilities value their independence; services should continue to develop which facilitate independent living.
  • Transition services should continue to improve and develop for people with learning disabilities as they age.

 

Last updated: 27/06/13

2. What commissioning priorities are recommended?

2012/01
Stimulate local markets to ensure the availability of choice and cost-effective provision which meets needs locally
:

  • Introduce a new learning disabilities respite facility on the former Levick Site.
  • Seek to bring people back home or to prevent others from being placed out of area relating to autism through remodelling local services including the development of supported living options, links to education and day opportunities.


2012/02
Promote supported living, reduce dependencies and foster reablement
resulting in a reduction of hospital admissions and a reduced reliance upon residential care:

  • Develop a three year programme for move on options for individuals within learning disabilities forensics services identified as ready to move on.
  • Promote, improve and increase supported living opportunities as the strategic direction for accommodating people with learning disabilities.


2012/03
Promote personalised systems which place the person at the heart of any process, provide information and advice, and stimulate universal access to all services
:

  • Ensure that government targets for the implementation of personalised budgets are met.
  • Align services in conjunction with the introduction of personal health budgets.
  • Introduce a Universal Information, Advice and Advocacy service.


2012/04
Promote health and wellbeing including early intervention, to prevent/reduce reliance on service provision
:

  • Introduce personal budgets for carers
  • Improve the public health of residents within residential care settings through improved nutrition, hydration and social inclusion.


2012/05
Ensure that the principles of quality, equality and value for money are embedded within processes and service provision
:

  • Seek to renegotiate home care contracts and/or conduct market testing on service provision and cost.
  • Scope the re-provision of day services as part of the community building review.
  • Undertake a review of the ‘Fairer Charging’ policy.
  • Review all out of area placements, developing local services where possible and renegotiating placement costs. This should be carried out in conjunction with the NHS to agree risk share on high cost placements and plans for move on.
  • Rationalise day service provision for individuals in residential care settings.
  • Implement a single resource allocation system.

 

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).

Autism
Autism is a description given to a range of development disorders which affect the way a person processes information.  This results in a range of characteristics such as difficulties in social interaction and communication. The effects of these characteristics vary from person to person and in severity.

Recent research published by the NHS Information Centre provides detailed information on the prevalence rates of autism within the general population. The document, “Estimating the Prevalence of Autism Spectrum Conditions in Adults” revises upwards previous estimates. The report concludes that the general prevalence rate is 1.1% and that the rates are significantly higher for men (2%) than women (0.3%).

 

Last updated: 27/06/13

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

In January 2011 there were nearly 900 children with learning disabilities known to schools in Middlesbrough.  This rate is significantly higher than the rates seen in the North East and England.

Children with learning disabilities, Tees, 2011

The number of clients (aged over 18 years) receiving services has increased from 495 in 2005/06 to 715 in 2011/12, a 44% increase over 7 years.  The rate of service provision in Middlesbrough is above both England and the North East and is increasing more than national and regional rates (Source: NASCIS; RAP P1).

Adults with learning disabilities receiving services trend, Middlesbrough, 2005/06 to 2011/12

The data on service provision provides an indication of what types of services have been provided.  In Middlesbrough, a higher than average proportion of services are community-based.  The number of people receiving residential care services has tended to fall, nursing care has fluctuated slightly and community-based services have increased (numbers are rounded to the nearest 5).

Adults with learning disabilities and types of services, Middlesbrough, 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 Middlesbrough, the number receiving services is slightly higher than the expected number with moderate or severe learning disabilities.  It is likely that not all people identified will require services, but two-thirds of those estimated to have learning disabilities currently don’t receive services in Middlesbrough.

Estimated and known prevalence of learning disabilities, Tees, 2010/11 and 2012

In Middlesbrough, just under two-thirds of adults known to the local authority are in settled accommodation.  The accommodation status of nine percent is unknown.

Leaning disabilities and accommodation, Tees, 2010/11

The proportion of adults with learning disabilities who are in employment in Middlesbrough is higher than the rate seen nationally, but only half of the rate seen in Hartlepool.  About one-in-ten adults with learning disabilities in Middlesbrough are in paid employment.

Employment and learning disabilities, Tees, 2010/11

In Middlesbrough about 35 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 Middlesbrough is significantly below the England rate.

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, Middlesbrough, 2012

Autism
There are 244 people known to social carein Middlesbrough who are diagnosed with an autistic spectrum condition.  Almost half of these aged under 18 (113 individuals, 46%), with the remainder aged between 18 and 69.  Using the 1.1% overall prevalence rate (Brugha et al, 2012), there may be as many as 1,210 people in Middlesbrough with an autistic spectrum condition (ASC).

Of those aged 18 and above, 118 (89%) are recorded as accessing services primarily due to a learning disability, 10 due to a mental health condition and three with a physical disability.

More than three-quarters of those with ASC known to services are aged under 30, and over half are under 20. It is believed this is linked to greater awareness of autism amongst health professionals and improved diagnostic techniques in recent years.

Age and autism, Middlebrough, 2011

Currently there are 15 people with autism in paid or voluntary employment (11% of those aged eighteen and above known to social care services).

The majority of people with ASC are resident in traditional home settings.  However, of those people with ASC known to social care services, the accommodation status was unknown for 6 people (4.6%).  Five (3.8%) were in acute or long-stay healthcare, residential facility or hospital.

 

Last updated: 27/06/13

5. What services are currently provided?

Personal budgets
Middlesbrough Council has been implementing personal budgets in recent years.  One-quarter of people with a learning disability and personal budget in Middlesbrough now receive a direct payment and 15% are employing their own personal assistant.

Care homes
There are eleven care homes whose primary client group includes people with learning disabilities. Together they have a capacity of 148 and, in November 2011, 138 of these places were occupied.
In March 2012, there were 59 people known to be resident in out-of-area care placements. 42% of these are within Tees Valley.

Day opportunities
Middlesbrough Council operates its Community Inclusion Service day opportunities from seven locations with a capacity of 119. The service provides a range of traditional day care services and the opportunity to acquire new skills.  In addition, the Council has contracts with two providers for additional day provision for around 200 people with learning or physical disabilities.

Personal care, enablement and support
There are several providers in Middlesbrough who can provide support for a wide range of need, from low level housing-related support to high care needs including personal care.  In addition to these services, Middlesbrough Council has four commissioned domiciliary care agencies who deliver personal care to service users from all client groups.

Middlesbrough Council operate its enablement and support services by way of framework contracts with five providers, with a combined capacity of 130.

There are a number of supported living schemes in Middlesbrough.

Autism-specific services
Middlesbrough Council has framework contracts with eight providers to work with people who are assessed as needing assistance to maintain independent living.  These services support a person with day-to-day activities (such as preparation of meals, personal care), access to services (such as healthcare) and other needs identified in conjunction with their social worker.

Other and generic services
The Gateway Club (an evening social club for people with learning disabilities) operates from a day centre and has capacity for up to 120 people.

Middlesbrough Council has commissioned a representational advocacy service aimed at supporting the best interests of people who lack capacity and have nobody else to support them when major decisions are made.

Middlesbrough Council operates the Forwards Team who support people of working age with disabilities who want to work. They deliver tailored support with a view to the person gaining access to sustainable jobs paying a living wage.

The Main Project offers a range of services to children, adults, parents and carers who have an autistic spectrum condition. These services include a social club, drop-in sessions for advice and support, workshops helping people manage anxiety and other emotions and practical assistance in identifying and exploiting potential business opportunities.  The service also acts as a champion for people with an autistic spectrum condition, assisting in identifying their needs by facilitating training and research programmes. Under the “Working Together For Change” programme, the service, in conjunction with local authorities and the NHS, is aiming to better understand the individual needs of this group and develop a strategy.

 

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 3% in 2020 and by 5% in 2030.  The number of working age adults with a moderate or severe learning disability is forecast to remain broadly stable.  However, there is likely to be a rapid increase in people aged over 65 with moderate or severe learning disabilities.

Forecast changes in learning disabilities, Middlesbrough, 2012 to 2030

Forecast learning disability numbers, Middlesbrough, 2012 to 2030

Local forecast of the numbers of people with learning disabilities are derived from research (Emerson and Hatton, 2004) that estimated prevalence rates adjusted for age and mortality for people with learning disabilities in the general population. These rates have been applied to the projected population for Middlesbrough to 2021.

Forecast number of people with learning disabilities by age group, Middlesbrough, 2012 to 2021Local forecasts of learning disabilities by age group, Middlesbrough, 2012 to 2021

Based upon this projection, the number in the population is not anticipated to increase significantly although the distribution of people with learning disabilities will alter in that those aged 50 and above will increase in number whilst those aged 15-49 will decrease.

Taking into account locally compiled figures relating to the number of people using social care services, it is forecast that the number of service users will increase from 684 in 2011 to 879 by 2016.

Forecast number of people with learning disabilities using social care services, Middlesbrough, 2004/05 to 2015/16Forecast service use by people with learning disabilities, Middlesbrough, 2004/05 to 2015/16

Using the above, the estimated demand for services will change as follows:

Service Type

2010/11

2015/16

Change

Community Based

617

784

27.1%

Residential Care

126

159

25.8%

Nursing Care

18

21

13.9%

 

Analysis of learning disabilities service users in Middlesbrough shows that there were 68 people with Down’s syndrome known to social care services, compared with 55 on the PANSI projection.

Using the 1.1% prevalence rate for autism spectrum conditions (ASCs) (Brugha et al, 2012), it is forecast that the number of adults with ASCs in Middlesbrough will increase from 1,210 in 2012 to 1,267 in 2030.

 

Last updated: 27/06/13

7. What needs might be unmet?

At present there are no specialist services for people with both learning disabilities and dementia. It is forecast that the number of people in Middlesbrough with learning disabilities aged fifty and above will increase by almost ten percent by 2021.

Autism is not a learning disability.  As such, services for people who are autistic and have other social care needs, for example, a physical disability, are not always designed to cater to the specific needs that are present in people with autism.

 

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?

A total of 214 people with learning disabilities were surveyed during February/March 2010 as part of the annual Department of Health PSS user satisfaction survey.  Most (169) reside in the community and 45 in residential care. There were 86 people who chose not participate, leaving 128 responses.  This was a generic survey across all ages and categories but there were 2 specific learning disability questions.  Responses are shown below.

Overall, how satisfied are you with the care and support services you receive?

Count

%

I am very happy with the way staff help me, it’s really good

84

70.6

I am quite happy with the way staff help me

25

21.0

The way staff help me is OK

7

5.9

I don’t think the way staff help me is that good

2

1.7

I think the way staff help me is really bad

1

0.8

Total respondents

119

100

 

Thinking about the good and bad things that make up your quality of life, how would you rate the quality of your life as a whole?

Count

%

My life is really great

49

40.5

My life is mostly good

48

39.7

My life is OK, some good things, some bad things

21

17.4

My life is mostly bad

2

1.7

My life is really terrible

1

0.8

Total respondents

121

100

 

Middlesbrough Council conducted a survey amongst people with learning disabilities to learn about their experiences of bullying.  Approximately 41% of respondents indicated they had experienced some form of bullying. Some reported they had experienced multiple types of bullying with verbal and emotional being the most common.  Of those who had been bullied, 77% told someone about it and, for 75% of those people, the bullying ceased. Of those who did not report the bullying, around half were frightened or concerned that doing so would exacerbate the situation.

 

Last updated: 27/06/13

10. What additional needs assessment is required?

A full understanding of the support needs of older people with a learning disability is required.

 

Last updated: 27/06/13

Key Contact

Name: Colin Holt

Job Title:

e-mail: colin_holt@middlesbrough.gov.uk

phone: 01642 729545

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.

The Westminster Commission on Autism (2016). A spectrum of obstacles: an enquiry into access to healthcare for autistic people.