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: 2017-01-13 11:17:34
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1. What are the key issues?

Valuing People Now (DH, 2009) aims to ensure that people who are most often excluded have the same opportunities and responsibilities as other citizens and are treated with the same dignity and respect. The groups include:

  • people with more complex needs;
  • people from black minority ethnic groups and newly arrived communities;
  • people with autistic spectrum conditions; and
  • offenders in custody and in the community.

The Stockton-on-Tees Learning Disability Partnership Board has the following priorities:

Health
Better Health for people with learning disabilities is a key priority. There is strong evidence that most people with learning disabilities have poorer health than the rest of the population and are at higher risk of dying at a younger age. Access to NHS services is often limited and people do not receive the same service and screening opportunities as the rest of the population.

To achieve full inclusion of people with Learning Disabilities in mainstream service the NHS need to reduce health inequalities and ensure specialist health services are available where needed.

Housing
Many people with learning disabilities have no choice over where they live or with whom. More than half live with their families, and most of the remainder live in residential care.  People with a learning disability and their families should have choice about where and with whom they live, and have access to mainstream housing (DH, 2009).  For this vision to become a reality, a choice of housing options needs to be available to all people with a learning disability. This should include properties in the private-rented sector and social housing, as well as giving people the option to buy their own home. Choice about housing for an individual should be based on good, person-centred planning to ensure it will suit their individual needs.

Employment
Disabled people benefit greatly from being employed and participating in the world of work. Employment increases participation in the community and the wider society improving people’s social inclusion and friendships along with added benefits such as increased confidence, social inclusion, improved independence, economic mobility and social status.

Employment supports the development of new skills and learning opportunities that can enable individuals to develop personally. Employment and economic status have been identified as being beneficial for mental and physical health and general wellbeing.

Inclusion means enjoying the same opportunities that others enjoy - paid work, lifelong learning, participation in your community, networks, groups and organisations. It means having friends who have similar interests and living the life you want to in the community of your choice. For most people, it means being defined by your interests, activities and abilities - not just by your disability or the health or social care services you use.

Personalisation
The Department of Health describe personalisation as “every person who receives support, whether provided by statutory services or funded themselves, will have choice and control over the shape of support in all care settings”. Stockton is committed to give people more choice, control and independence through personalised services. This can be achieved through a range of options such as direct payments, personal budgets, person centred style approaches and the provision of information and advice services.

Transitions
Transition to adult services from children’s services remains to be a difficult time for carers and the young person.  A key priority is to continue to improve the transition and have clear information for people.

Transforming care
The transforming care agenda is a key focus and involves partnership working to make sure that people are supported to live in the right accommodation. The aim is to improve services for people with learning disabilities and/or autism, who display behavior that challenges, including those with a mental health condition. This will drive system-wide change and enable more people to live in the community, with the right support, and close to home.

Involvement in the community
People with learning disabilities are often excluded from the community for a number of reasons. Transport is often a barrier and prevents people from being able to travel to events and activities within the community. People are often worried about how to get help if they need it when they are in the community,  Stockton have worked with a range of partners to launch the Safe Place scheme across the borough.

 

Last updated: 13/01/17

2. What commissioning priorities are recommended?

2016/01
Provide good quality healthcare that meets the needs of people with learning disabilities
by:

  • Ensuring people with learning disabilities have a health action plan;
  • Providing annual health checks;
  • Training healthcare staff to understand the needs of people with learning disabilities;
  • Improving access to mainstream health services and mental health services.

2016/02
Ensure the housing requirements of people with learning disabilities are identified and planned for
by:

  • Increasing the options of housing available for people with learning disabilities;
  • Planning for future needs of people with learning disabilities by working in partnership with housing partners;
  • Increasing the number of people with learning disabilities in settled accommodation.

2016/03
Create employment opportunities for people with learning disabilities
by:

  • Increasing employment opportunities for people with learning disabilities;
  • Exploring different ways of creating opportunities for people;
  • Working with partners.

2016/04
Support people to maximise their independence and have more control over the services they use
by:

  • Offering people a direct payment to have choice, control and flexibility over the services that they receive;
  • Involving people in their care and support plan to ensure a personalised approach.

2016/05
Support people to ensure that they are supported to live in the community
with the right support by:

  • working with partners to ensure a multi-disciplinary approach;
  • ensure people are empowered to make choices about the services they receive;
  • have a range of services to ensure that people have the right care in the right place;
  • have a skilled workforce to support people.

 

2012/01

Continue to commission and monitor the Learning Disabilities Directed Enhanced Service (DES), and ensure general practices are offering high quality health checks to all eligible patients, including consideration of alternative methods of delivery for those patients registered at a practice not signed-up to the DES.

2012/02
Commission services in line with the expected increase in prevalence of adults with a learning disability over the next 10-15 years.

2012/03
Improve the quality of primary care learning disability registers
, including improving the recording of people with mild learning disabilities.

2012/04
Ensure all requirements of Six Lives, Healthcare for All and Improving the Health and Well-being of People with a Learning Disability are delivered
by local providers and commissioners.

2012/05
Implement the action plan arising from the annual health self-assessment framework
to ensure continuing improvement in local services for adults with learning disabilities.

2012/06
Implement the diagnostic pathway for autism
and improve the recording of people with ASD on general practice registers. Priorities for autism now in Autism topic.

2012/07
Investigate the needs of people with autism and ensure access to mainstream and universal services
, enhancing independent living. Priorities for autism now in Autism topic.

2012/08
Stimulate the local market and provide more respite provision within local communities
including meeting the needs of people with challenging behaviour and autism. Priorities for autism now in Autism topic.

2012/09
Reconfigure services so that there is a move towards provision in the community
, including day services and supported housing.

2012/10
Increase the numbers of adults with learning disabilities who are in settled accommodation and employment
.

2012/11
Investigate the demand and costs for specialist services
to ensure that service provision is delivering value for money.

2012/12
Implement recommendations from the Stockton Borough Council efficiency, improvement and transformation review
.

 

Last updated: 13/01/17

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: 09/01/13

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

In 2014, there were 1,600 children with learning disabilities known to schools in Stockton-on-Tees compared with just over 900 in 2011.  This rate is higher than both England and the North East.

Children with learning disabilities known to schools, Stockton, 2014

The number of clients aged over 18 years receiving services has increased from 435 in 2005/06 to 550 in 2013/14, a 26% increase over 9 years.  The rate of service provision in Stockton-on-Tees is slightly higher than England and below the North East (Source: NASCIS; RAP P1).

Stockton adults with learning disabilities receiving services trend

The data on service provision provides an indication of what types of services have been provided.  In Stockton-on-Tees, types of service provision are in proportion with England.  The number of people receiving residential care services has tended to fall whereas community-based services have increased (numbers are rounded to the nearest 5).

Stockton adults with learning disabilities, types of services reveived

Estimates of the expected number of people with learning disabilities (Projecting Adult Needs and Service Information, PANSI, and Projecting Older People Population Information, POPPI) can be compared with numbers on general practice registers and those receiving services known to the local authority.  In Stockton-on-Tees, the number receiving services is less than the expected number with moderate or severe learning disabilities.  It is likely that not all people identified will require services, but 85% of those estimated to have learning disabilities currently don’t receive services in Stockton-on-Tees and only 22% are recorded on general practice registers.

Tees observed and expected number of people with learning disabilities

In Stockton-on-Tees, less than 70% of adults known to the local authority are in settled accommodation, the second lowest rate in the North East.

Settled accommodation for adults with learning disabilities, Stockton

The proportion of adults with learning disabilities who are in employment in Stockton-on-Tees has increased from 2.7% in 2010/11 to 6.3% in 2014/15.  Only one-in-sixteen adults with learning disabilities in Stockton-on-Tees is in paid employment compared with about one-in-seven in Hartlepool.

Tees employment of adults with learning disabilities

In Stockton-on-Tees about 35 people with learning disabilities (rounded to nearest 5) were referred to safeguarding teams in 2014/15.  The rate of referral for abuse of people with learning disabilities in Stockton-on-Tees is below the England rate, but not statistically significantly.

Tees people with learning disabilities referred to safeguarding teams

A comprehensive profile of learning disabilities is available from the Public Health England.

Additional information about learning disabilities can be found at the Learning Disabilities Observatory.

 

Last updated: 13/01/17

5. What services are currently provided?

Primary care services

  • All 26 Stockton-on-Tees general practices have a Quality Outcomes Framework learning disabilities register.
  • Two-thirds (18/26, 69%) of general practices have signed up to the learning disabilities directed enhanced service (DES) that requires practices to offer annual health checks to patients with learning disabilities who are known to Adult Social Care and Health services primarily due to their learning disability.
  • A primary care Health Facilitator works in both Stockton and Hartlepool.  The main purpose of this role is to promote the health needs of people with a learning disability and enable access to wider health services.

Specialist learning disability services
In-patient and community-based specialist learning disability services are provided by Tees Esk and Wear Valleys NHS Foundation Trust and Stockton-on-Tees Borough Council.  Specialist healthcare and social care services are provided by a number of separate teams.

Community learning disability teams are multi-disciplinary and multi-agency teams that include a range of professionals (including consultant psychiatrist, community learning disability nurse, social worker, physiotherapist, occupational therapist, speech and language therapist, clinical psychologist and administrative support) and act as the gate-keeper to services for adults with a learning disability living in the community.

Social care services
Adults who have received a Care Act assessment who meet the criteria below will be eligible for services. An adult’s needs meet the eligibility criteria if:

(a) the adult’s needs arise from or are related to a physical or mental impairment or illness;

(b) as a result of the adult’s needs the adult is unable to achieve two or more of the outcomes specified in below:

(c)as a consequence there is, or is likely to be, a significant impact on the adult’s well-being.

The specified outcomes are:

(a) managing and maintaining nutrition;

(b) maintaining personal hygiene;

(c) managing toilet needs;

(d) being appropriately clothed;

(e) being able to make use of the adult’s home safely;

(f) maintaining a habitable home environment;

(g) developing and maintaining family or other personal relationships;

(h) accessing and engaging in work, training, education or volunteering;

(i) making use of necessary facilities or services in the local community including public transport, and recreational facilities or services; and

(j) carrying out any caring responsibilities the adult has for a child.


Community support
Community services are available to support an individual to live independently in their own home. There are a number of specialist services to meet the needs of people with complex needs.

Residential and short breaks services
In Stockton-on-Tees, about 150 adults with learning disabilities live in residential care.

The adult placement service offers long-term placements where an individual lives with a non-related “carer”.

Short breaks are available for adults with a learning disability provided by the council’s in-house service. There is also a short breaks caravan which is available as an alternative to a building’s based respite service. Individuals may also receive respite through health services or may use a personal budget to purchase alternative respite.

Continuing care
Continuing care is provided over an extended period to meet physical and mental health needs and involves NHS and social care services.  Fully-funded NHS 'continuing care' is a package of care arranged and funded solely by the NHS, whereas 'continuing health and social care' is a joint package of care that involves services from both the NHS and social care.

Direct payments/personal budgets
Direct payments are cash payments made to individuals who have been assessed as needing services, in lieu of social service provisions.  The aim of a direct payment is to give more flexibility in how services are provided. By giving individuals money in lieu of social care services, people have greater choice and control over their lives, and are able to make their own decisions about how their care is provided.

Advocacy
Advocacy services support people with a learning disability to make their case and take action in their lives.  Currently there is one local provider of advocacy services for people with a learning disability.

Work preparation
STEPs is a Council-led service that provides support for vocational training and employment opportunities to adults with a disability living within Stockton Borough.

 

Last updated: 13/01/17

6. What is the projected level of need?

The number of adults forecast to have a learning disability is likely to increase by about 70 (3%) by 2020 and by about 250 (8%) by 2030.  The number of working age adults with a moderate or severe learning disability is forecast to remain similar up to 2030.  However, there is likely to be a rapid increase in people aged over 65 with moderate or severe learning disabilities.

Stockton learning disability projections

Stockton learning disability projection data

 

Last updated: 13/01/17

7. What needs might be unmet?

  • Independent living housing options need to be increased for people with learning disabilities.
  • To improve fair and equitable access for people with a learning disability services need to demonstrate the use of reasonable adjustments for this client group.
  • There is a need for more support for people with a learning disability who go into hospital (via acute liaison provision).
  • People with a learning disability need to have more choice of, and easier access to, vocational training activities.
  • The needs of people with a learning disability from BME communities need to be better understood, and information and awareness raising about what services are available is needed.
  • For people in transition, further work is required to continue to map need. Partnership working is needed to ensure that people are receiving the necessary support, in line with changes in expectations of clients to move away from more traditional services.
  • There needs to be appropriate support for people with a learning disability in the criminal justice system.

 

Last updated: 13/01/17

8. What evidence is there for effective intervention?

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 from 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: 13/01/17

9. What do people say?

Stockton Borough Council consults and engages with people with learning disabilities, their families and carers in a number of ways including:

  • Adult Social Care survey;
  • Stockton Helps All- service user group;
  • Consultation sessions through the learning disability partnership; and
  • Consultation through partner agencies.

For details of the outcomes of these consultations, please contact the topic lead (details below).

Last updated: 13/01/17

10. What additional needs assessment is required?

  • Further development to understand the needs of people with complex needs.
  • Undertake a needs assessment on the needs of people with learning disabilities in the criminal justice system.
  • Undertake a further needs assessment on the needs of people from black and minority ethnic communities.
  • Further assessment to understand the level of demand for specialist services to ensure that provision is at the required level.
  • Further development work to identify a range of services and options for people with learning disabilities to develop their skills and maximise their independence.
  • Understanding the level of uptake/access for disease prevention and screening programmes.
  • Understanding the extent to which people with learning disabilities are able to access the full range of mental health services (to be identified through the Stockton Green Light for Mental Health Steering Group engaging with managers from mental health and learning disability services).
  • Understanding of the level of compliance all service providers with local adult safeguarding policy and procedures. Work is already underway to achieve this.

 

Last updated: 13/01/17

Key Contacts

Topic lead

Name: Liz Hanley

Job Title: Adult Services Lead

e-mail: liz.hanley@stockton.gov.uk

phone:

 

Topic author

Name: Sarah Allen

Job Title: Commissioning Manager

e-mail: sarahjane.allen@stockton.gov.uk

 

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

Stockton-on-Tees Borough Council (2010). Commissioning Strategy for Learning Disabilities

Stockton-on-Tees Borough Council (2011). Autism Action Plan.

 

 

Other references

 

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.

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.

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.