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Topic on a Page - Learning Disabilities

Data Sources:

Estimated prevalence of Learning Disabilities in Lincolnshire Published: October 2014

Premature mortality of people with Learning Disability Published: October 2014

Public Health England: Learning Disabilities Profile

NHS Digital:

Learning Disabilities Census Report

Mental Health Services Data Set profiles

Further Data Sources:

Scroll to the bottom of the page to view and compare further datasets

Supporting
Information:

Local Government Association (LGA):

What councils need to know about people with Learning Disabilities Published: April 2014

Ordinary residence guide: Determining local authority responsibilities under the Care Act and the Mental Health Act

National Institute for Care and Health Excellence (NICE):

NICE guidance population groups: People with learning difficulties

Challenging behaviour and learning disabilities overview

NICE: Learning disabilities and behaviour that challenges: service design and delivery [NG93] Published: March 2018

Care and support of people growing older with learning disabilities Published: April 2018

NHS England (NHSE):

Transforming Care for People with Learning Disabilities

Developing support and services for children and young people with a learning disability, autism or both

NHS Evidence:

Attention Deficit Disorder

Downs Syndrome

Learning Disabilities

Public Health England (PHE):

Data and Resources: Learning Disabilities and Children and Adolescent Mental Health Services (CAMHS)

Resources: Learning Disabilities

Supporting women with learning disabilities to access cervical screening

Improving healthcare access for people with learning disabilities

Social Care Institute for Excellence (SCIE):

People with Learning Disabilities

Mental Capacity Resources and Services

Miscellaneous:

National Children's Bureau: Resources to support children with SEND

Lincolnshire County Council

Learning Disabilities Health Needs Assessment (2013) Full report

Learning Disabilities Health Needs Assessment (2013) Summary Report

Learning Disabilities Health Needs Assessment (2013) Easy Read Version

House of Commons Library Briefing Papers:

ESA and PIP Reassessments

Learning Disability: policies and issues

Linked Topics:

Topic last reviewed: Jan-18

JSNA Topic: Learning Disabilities

Background

Learning disability is most commonly defined as a history of developmental delay in acquiring a level of adaptive behaviour and/or social functioning that would be expected in individuals by a certain age and in whom there is evidence of significant intellectual impairment.

In the 2011 White Paper "Valuing People", the Department of Health described a learning disability as:

  • "a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with
  • a reduced ability to cope independently (impaired social functioning) which started before adulthood with a lasting effect on development."

An intelligence quotient (IQ) of less than 70 is also generally considered to be an indicator of learning disability, although "Valuing People" suggests that "this is not, in itself, a sufficient reason for deciding whether an individual should be provided with additional health and social care support."

Learning disabilities are different to learning ‘difficulties’ such as dyslexia, which do not affect intellectual ability.

People with learning disabilities are among the most vulnerable in our society; many have co-existing conditions such as mental illness and physical disabilities that contribute to the difficulties they face in leading fulfilling lives and maintaining good health, to the extent that the average life expectancy among this group is much lower than the general population.

  • However, medical advances and improved diagnostics mean that the number of people with learning disabilities will increase in the medium to long term, particularly in the 65+ age group, although this may produce a 'spike' that will level off over time.
  • Current estimates suggest an overall increase of around 3.2% of adults with learning disabilities in the county by 2020, but with a predicted increase of 11.1% in older people (Source: PANSI and POPPI).

The likely increase in numbers of adults with learning disabilities, over the short, medium and long term, is likely to put considerable pressure on health and social care provision at a time of austerity. More support will be needed to enable people with learning disabilities to develop their independence, lead fulfilling lives and avoid inpatient care. This will require more people to:

  • have the means to take care of themselves and to look after their own health
  • find employment and be less reliant on benefits and services
  • manage their own finances
  • reside with family or in self-supported/supported accommodation.

This may be with support if a person has assessed and eligible unmet needs.

Context

National Strategies, Policies & Guidance

One of the major pieces of recent legislation to influence services for people with learning disabilities is The Care Act 2014, which provides a coherent approach to adult social care in England and sets out new duties for local authorities and partners and new rights of service users and carers. The Act, which is underpinned by the principle of the individual's wellbeing, includes a statutory requirement for local authorities to collaborate with other public bodies such as health and housing and requires a seamless transition for young people moving to adulthood. The Act requires that local authorities promote participation by providing interventions that are co-produced, enabling individuals to influence the way services are designed, commissioned and delivered.

In December 2012 the Department of Health published the "Winterbourne View Review Concordat: programme of Action" following the shocking revelation of abuse at Winterbourne View. This document, aimed at providers of health and social care, local authorities and regulators, was a commitment by stakeholders to a programme of change to improve the quality of care of children, young people and adults with learning disabilities and/or autism and to ensure better outcomes for them.

In October 2015 the local Government Association, Directors of Adult Social Services and NHS England published "Building the Right Support: a national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition". The document sets out a requirement for Clinical Commissioning Groups, Local Authorities and NHS England to work together to develop local Transforming Care Partnerships and a local Transforming Care plan that will have the responsibility for the planning, development and implementation of the changes by the end of 2018. In Lincolnshire, services that support people with a learning disability and/or autism have been restructured so they can access support as near to their home community as possible. Where people with a learning disability and/or autism have a mental health problem or display behaviour that challenges and are at risk of being admitted to inpatient care, a dedicated team operates on a 24 hour basis and can offer crisis support in a person's home.

In 2006 the Disability Rights Commission recommended the introduction of annual health checks for those with learning disabilities to help improve the identification of illness and subsequent appropriate treatment. GP practices in England can now provide health checks for adults with learning disabilities as part of the Directed Enhanced Services scheme.

Putting People First is the ministerial concordat and protocol (HM Government 2007), which established collaboration between central and local government and the social care sector, introduced the idea of a system where people can have maximum choice and control over the services they receive.

The introduction of personal budgets and the option for people to take these as direct payments is a major step towards ensuring that care packages are tailored towards the needs and wishes of service users. Lincolnshire is one of nine National Demonstrator sites for Integrated Personal Commissioning (IPC) and therefore “personalisation” will be at the heart of our local Transforming Care Plan.

The NHS 5 Year Forward View, the Care Act 2014 and the Children and Families Act 2014 place a focus on outcomes, personalisation and the integration of services. The personalisation of support for people of all ages with a learning disability and/or autism, with challenging behaviours or a mental health condition, offers the opportunity for fundamental transformation and whole system improvement. Further information is available in the Autism JSNA Topic

Accessible Documents
The Care Act: (easy read version)

Valuing people - What Now? (easy read version)

Building the Right Support (easy read version)

Service model for commissioners of health and social care services (easy read version)

Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD) (easy read summary)

Six Lives Report (easy read version)

Local Strategies & Plans

Lincolnshire's Transforming Care Plan sets out how services will maximize the opportunity for care that is focussed on keeping individuals healthy, well and supported in the community, including those that need help in a crisis and includes the following key priorities:

  • making sure that people with a learning disability and/or autism are only admitted to hospital when absolutely necessary and then for the shortest time possible in order to meet their needs
  • ensuring that local mental health services are reasonably adjusted for people with a learning disability and/or autism
  • increasing the uptake of annual health checks for people with a learning disability and/or autism.

Ensuring the plan delivers these priorities will require on going and a likely expansion of integrated working arrangements between health and Social Care services with a greater emphasis on early intervention and prevention. A copy of the plan can be found at South West Lincolnshire CCG.

There is a highly integrated approach to the commissioning, management and delivery of services for people with a learning disability and strong working relationships have been developed between health and Lincolnshire County Council. This arrangement includes a Section 75 agreement, with pooled funding for the commissioning of services that support adults with a learning disability with adult care and/or continuing health care.

What is the picture in Lincolnshire?

What the data is telling us

  • Current estimates suggest there are over 15,000 individuals with a learning disability in Lincolnshire.
  • Around 1,800 adults with a learning disability receive support through the Section 75 pooled budget for Adult Care and Continuing Health Care (CHC), which represents approximately 12% of the estimated number in the county. Although not everyone is likely to be eligible for adult social care and/or CHC provision, the likelihood is that the demand for services will increase over the next few years.
  • Current estimates suggest an overall increase in Lincolnshire of around 3.2% of the proportion of adults with learning disabilities in the county by 2020, but with a predicted increase of 11.1% in older people (Source: PANSI and POPPI).
  • There are currently over 500 adults with learning disabilities in the county that are supported in long term residential care, at a cost of around £22 million per annum. With increasing numbers of older people with learning disabilities, the cost is set to rise.
  • Current data suggests that around 80 young people with severe learning disabilities will move from Children's Services to Adult Social Care by 2020.
  • The most recent data available (SALT return 2016-17) suggests that in Lincolnshire the proportion of adults with a learning disability and in paid employment is 4.4%, which is lower than the national average of 5.7%.
  • Not everyone with a learning disability is registered as such with their GP; current data shows only 3,524 are registered as having a learning disability, which is less than 25% of the estimated number of people with a learning disability in the county.
  • The most recent data shows that over 98% of the GP practices in Lincolnshire have signed up to the Directed Enhanced Services scheme.
  • Less than 30% of those registered with a GP as having a learning disability have accessed a health check during the previous year.
  • Many people with a learning disability are cared for by older parents and carers
  • According to the Centre for Public Health during 2016, it is estimated that nationally the proportion of people in prison that have a learning disability or difficulty which interferes with their ability to cope with the Criminal Justice System is between 20%-30%.
  • During 2012 The Prison Reform Trust found that information accompanying people into prison was unlikely to suggest the presence of a learning disability and a recent inspection by the Criminal Justice Joint Inspection Group during 2015 found that there is a reliance on self-disclosure.
  • 48.9% of adults that currently use adult social care services (approximately 28% of those registered) receive their personal budgets as a Direct Payment.

Trend

Health and local authorities are required to report on their performance regarding the effectiveness of service provision, the satisfaction of service users and the achievement of nationally agreed outcomes. The most recent information available from NHS Digital suggests that in Lincolnshire:

  • 2.4% of adults aged 18-64 have a learning disability, which is comparable with the national average
  • 2% of adults aged 65+ have a learning disability, which is comparable with the national average
  • the number of adults of working age (18-64) in Lincolnshire in paid employment is lower than the national average but comparable with other combined local authorities in the East Midlands
  • the proportion of people with a learning disability in settled accommodation (77.2%) is higher than the national average (76.2%) and higher than in some statistical neighbour authorities, such as Nottinghamshire (76.2%) and Gloucestershire (70.6%).

The current trend is for more people with a learning disability to be supported to live as independently as possible in their own home. Transitions of Young People from Children's Services to Adult Care continue to add pressures on existing funding given the increased complexity of presenting needs. In addition, more people are being empowered to take control over how their needs are met and have the option of taking their personal budget as a direct payment. As a result:

  • It is predicted that the number of people with a learning disability that require either residential or nursing care will increase from 546 in 2015-16 to 566 by 2020.
  • It is predicted that the number of people with a learning disability that may require community supported living services will increase from 647 in 2015-16 to around 850 by 2020.
  • In addition it is projected that the number of people supported in the community via a direct payment is predicted to increase from 510 in 2015-16 to 810 by 2020.

Key Inequalities

The Government acknowledges the inequalities in health care experienced by people with learning disabilities. The White Paper "Valuing People" and the follow on strategy "Valuing People Now" emphasized the right for people with learning disabilities to be treated with dignity and respect and to have the same life chances as the rest of the population, with the same aspirations and opportunities.

A major inequality that exists is the difference, of life expectancy for people with a learning disability which is much lower than the general population. People with a learning disability face a number of challenges in accessing health services, including the ability to understand literature, keeping appointments and the ability to articulate the nature of any existing health concerns.

A further major inequality is the ability to secure and maintain gainful employment. According to NHS Employers people with learning disabilities are more likely to be excluded from the workplace than any other group of disabled people. Possible reasons for this include a lack of work readiness, poor communication skills, a fear of losing benefits and the general lack of willingness on the part of some employers to make reasonable adjustments. There is also a requirement for additional resources to support people into and sustain employment.

Research has shown that people with a learning disability have a lower life expectancy than those in the general population. The following key documents highlight why this is an issue and the importance of annual health checks in reducing the number of premature deaths of people with a learning disability:

A health check should result in a health plan. The uptake of this service, nationally and locally, is very low; there are currently no national targets for completion of the number of health checks and the service is not mandated. This is, however, a priority area for Lincolnshire.

Current Activity & Services

With the exception of the integrated assessment and care management team and in-house day services provided by Adult Care and a small number of CCG lead officers, most of the services locally commissioned to support adults with learning disabilities are supplied by providers in the independent sector or by NHS providers. Key stakeholders are involved in the planning and development of commissioned services and specifications set out clear requirements for the delivery and quality standards. Once commissioned and procured, services are monitored to ensure they continue to meet people's needs.

The following key services are currently commissioned by either Clinical Commissioning Groups or the local authority and can be evidenced in the Adult Social Care Market Position Statement 2015-2018:

Advocacy
The independent advocacy service, Voiceability, enables people that have a learning disability to have their views heard and to be supported in communicating with those in a position of authority. Through this service people can be helped to access information and advice, particularly at times of crisis and to challenge discriminatory practice and poor standards. They can also be supported to be involved in decision making about their own health and care.

Involvement
The Learning Disability Partnership Board (LDPB) and its associated working groups provide opportunities for interested stakeholders to be involved in the planning, design and co-production of services for people with a learning disability. The LDPB's remit also includes contributing to the annual Learning Disability Self- Assessment. The local authority currently commissions an Involvement service to enable people with a learning disability to participate in LDPB activities.

Residential and Nursing Care
These services are currently provided by over 73 organisations that offer both short and long term accommodation options. Where it is possible and appropriate placements are normally sourced within Lincolnshire rather than out of county. Data from December 2016 shows the following:

  • Residential care (in county) 404
  • Residential care (out of county) 55
  • Nursing care (in county) 66
  • Nursing care (out of county) <10

Community Supported Living
Many people with learning disabilities live either with their family or independently in accommodation provided via District Council Housing Authorities and registered social housing local landlords under direct lease arrangements. There are four group homes in the county.

Day Services
The County Council runs a number of building based day services that have recently been the subject of capital investment in order to bring buildings up to date and to improve facilities for people that use these services. The County Council also commissions services from a number of independent day care providers. Alternatively, people that decide to take their personal budget as a direct payment can use some of this to purchase their own day service provision.

Respite
Two specialist facilities are currently commissioned that provide overnight short break services. In addition, the County Council commissions 'shared lives services', where people with a learning disability can access a short break in the home of another family or carer.

Employment support
The Step Forward project offered a programme of activities designed to help people to identify those aspects of a work environment that prevent thwhich finished at the end of September 2017, engaged with over 100 individuals, including 35 that had a learning disability. Whilst securing paid employment was not the main focus, people that participated in the project had the opportunity to access careers guidance, develop a CV, compile a list of suitable job opportunities and participate in work experience. The valuable feedback from participants is being used to help shape a new supported employment service that will be available from summer 2018.

Health, Mental Health and Crisis Support Services
For people with a learning disability whose mental health problems cannot be met by mainstream mental health provision with reasonable adjustments, specialist Learning Disability services are provided by Lincolnshire Partnership NHS Foundation Trust and commissioned directly by South West Clinical Commissioning Group on behalf of all four local Lincs CCG's. These services are primarily to assist hospital admission avoidance and to help people to remain living in the community, whilst receiving assessment and treatment.

Care and Treatment Reviews
Care and Treatment Reviews (CTRs) have been developed as part of NHS England's commitment to improving the care of people with a learning disability and/or autism with the aim of ensuring that they are safe, that their current care is evidence based and appropriate and that plans are in place for their future. CTRs ensure that any admission considered is the least restrictive option for the individual and is supported by a clear rationale with measurable outcomes.

The SW CCG leads on CTRs in Lincolnshire. The Team ensures that CTRs are undertaken within timescales, that recommendations are implemented and followed up and each person admitted to a mental health or learning disability hospital is safe, receiving the right care, that the admission was absolutely necessary and only for as long as is required in order for their needs to be met. Each CTR is undertaken by a panel made up of an independent clinician, an Expert by Experience Worker and is chaired by the lead commissioner. The person with a learning disability, their family and members of the multi-disciplinary team all participate in the review.

Older carers
Carer's First are commissioned to deliver services for unpaid carers across Lincolnshire.

Unmet Needs & Gaps

The Transforming Care agenda continues to be a major influence on the future planning of services and provision for people with a learning disability: the need to ensure that those experiencing poor mental health and/or displaying challenging behaviour are enabled, as far as possible, to be treated in or near their own communities has triggered a re-design of services, which will take several years to fully implement. While assessment and care management is now provided by local teams, there is still a need for inpatient care that can support people in a crisis.

Whilst there has been some re-investment of CCG funding in Specialist Community Mental Health Services to facilitate community based assessment and treatment, there is still an identified need for additional support at times of crisis.

More local information is needed regarding the difference between the number of people with a learning disability that die prematurely of common illnesses or conditions, e.g. heart disease and bowel cancer, compared with the general population.

Helping people to maintain their independence will require a greater emphasis on enabling them to be more self-sufficient, including the help to find suitable employment. Most current pre-employment and in work support is project based and, therefore, of limited duration. This will require the support of the Voluntary sector and emerging Neighbourhood teams.

More data from health sources would help with establishing the level of need for service provision, e.g. hospital episodes, multiple health conditions.

More information is needed regarding people with a learning disability that enter the Criminal Justice System in terms of the numbers and the support provided.

Housing benefit will be transferred from local authorities, i.e. the district councils in Lincolnshire, to the Department for Work and Pensions, which may present challenges for obtaining data at a local level. However, the Government has recently announced that the housing benefit cap will not be introduced for people with learning disabilities until 2019.

Universal Credit is now being rolled out in Lincolnshire for new claimants. This has posed some challenges nationally as a result of payments being made monthly instead of either weekly or fortnightly and the housing benefit element of such claims being paid to the tenant rather than directly to the landlord; in areas where Universal Credit is already operating, this has resulted in many people defaulting on rent agreements and people being served notices of eviction. The roll out of Universal Credit across the county will be monitored for signs of any similar issues.

There is a recognised national shortage of nursing staff, particularly those that are qualified and experienced in working with people with learning disabilities. The Lincolnshire Care Association has also indicated that there are ongoing difficulties in recruiting and retaining Care staff in the county. Workforce development is, therefore, a key issue for providers and commissioners.

Local Views & Insights

The following issues have been raised through local consultation with key stakeholders, with contributions from health and care staff, service providers and Healthwatch. In addition, feedback has been sought from the Learning Disability Partnership Board:

  • the support available for carers needs to be assessed; this will be addressed via the JSNA Carers topic
  • children with more complex needs are coming into the education system and so provision needs to be adequate to meet their needs; this will be addressed by the JSNA Special Educational Needs and Disability topic
  • some data includes both learning disabilities and learning difficulties and so include conditions such as dyslexia and dyscalculia. While these may present challenges for learners, they do not impair intelligence; inclusion of these conditions, therefore, hinders comparisons with datasets that focus purely on learning disabilities
  • recording of people's health conditions is a problem as there is no one, single database that captures everyone diagnosed with a learning disability
  • there needs to be investment in the workforce
  • new accommodation needs to be developed in areas where people currently live
  • if people are to find suitable employment they are likely to need help with the cost of travel and using public transport.

Risks of not doing something

People with learning disabilities are among the most vulnerable in our society. Many have multiple conditions such as mental illness and physical disabilities that contribute to the difficulties they face in leading fulfilling lives and maintaining good health, to the extent that the average life expectancy among this group is much lower than the general population. In addition people with Learning Disabilities can experience problems in accessing mainstream services and employment. This has a further impact on quality of life.

However, medical advances and improved diagnostics also means that the number of people identified with learning disabilities will increase, with some people living longer (particularly in the 65+ age group). The complexity of needs is also expected to increase with more young people expected to enter adulthood with behaviours that challenge and/or mental health being a key consideration.

The projected increase in the number of people with a learning disability predicted to need support will inevitably have cost implications.

The increase in numbers of adults with learning disabilities as well as the complexity of needs will put considerable pressure on health and social care provision at a time when national funding is being reduced.

Current information from Children's Services suggests that around 80 young people with severe learning disabilities are likely to require support from Adult Social Care Services during the next five years.

It will be necessary to transform the existing system of care and support with an increased focus on personalisation. Preventing needs of this group of people escalating particularly at a time of crisis will be an important factor in service design. A wider contribution from universal services for example GP's and Learning Disability Annual Health Checks, improved access to crisis support services, wellbeing and community networks will also be important to improve and maintain health and wellbeing but also to minimise the demand on higher cost services.

There will need to be substantial capital investment in the county in order to ensure that people with a learning disability have access to suitable accommodation that enables them to live as independently as possible.

What is coming on the horizon?

Lincolnshire is one of the 9 National Demonstrator sites for Integrated Personal Commissioning (IPC); Learning Disabilities is one of the identified cohorts, which will be the main model of care for around 5% of a local system's population, including people with multiple long-term conditions, people with severe and enduring mental health problems and children and adults with complex learning disabilities and autism. As a result of IPC, people should:

  • be central in their developing care plan and agree who will be involved
  • be able to agree the health and well-being outcomes they want to achieve, in dialogue with the relevant health, education and social care professionals.

More information can be found at: NHS England Commissioning

Other issues that may impact on provision for people with learning disabilities are as follows:

  • potential further national funding reductions for the public sector
  • increased demand for Social Care and Specialist Health Services
  • review of existing Section 75 Arrangements to consider opportunities for an expansion of integrated working.

What should we be doing next?

  • The Transforming Care for People with Learning Disabilities – Next Steps agenda is a major influence on the future planning of services and provision for people with a learning disability and is the biggest driver for change since Valuing people in 2011 making it clear that having a learning disability and/or autism is not a reason for admission to hospital and that there is the need to ensure that those experiencing poor mental health and/or displaying behaviours of concern are enabled, as far as possible, to be treated and supported in or near their own communities, with access to the same range of evidence based mental health services as the rest of the population. This national driver and local commitment to health equality has triggered a re-design of services that may take up to two years to fully implement. While assessment and care management and community health and social care is provided by local and specialist community health services are provided through a local mental health care trust, there will be occasions when admission to an inpatient facility may be required for a short period.
  • If people are to be enabled to remain in their own communities they need suitable accommodation with the appropriate level of support. A needs assessment is currently being undertaken to establish the need for additional accommodation, including refurbishment of existing properties and, where required, new build.
  • Assistive technology and adaptive equipment are helping people to be more independent and to remain in their own homes in safety and security. Advances in this field are enabling many people to maintain contact with sources of support without the need for another person to be always present.
  • Helping people to maintain their independence will require a greater emphasis on enabling them to be more self-sufficient, including support to find and sustain suitable employment. Most current pre- employment and in work support is project based and, therefore, of limited duration. The County Council is looking to invest in Supported Employment services that will help people to find paid work and to receive any support that may help them to sustain it.
  • More data from primary care providers, learning disability community health services and hospitals would help with establishing the level of need for service provision, e.g. hospital admissions, multiple health conditions.
  • More information is needed regarding people with a learning disability that enter the Criminal Justice System in terms of the numbers and the support provided.
  • Housing benefit will be transferred from local authorities to the Department for Work and Pensions, which may present challenges for obtaining data at a local level.

     

  • Universal Credit is currently being rolled out across the county for new claimants. This may present challenges for people that have difficulties in managing their budgets.
  • There is a national shortage of nursing staff, particularly those that are qualified and experienced in working with people with learning disabilities. This may necessitate a review of the tasks that must be completed by either Qualified Nurses or, alternatively, by other professionals.

As far as possible, future services will be organised around intended outcomes that will be defined by evidence of need and local priorities. Partner organisations, people that use services, their families and carers will be involved in the co-design and co-production of provision.

The Transforming Care Plan sets out a new service model that puts an emphasis on enabling people to access health and social care services that are:

  • closer to home
  • evidence based
  • designed to help individuals maintain their independence for as long as possible
  • equipped to identification of physical and mental health problems as early as possible so as to reduce the health inequality for people with a learning disability.

There needs to be a focus on personalization, with more people being empowered to take control of how their personal budgets are deployed.

 

If you need to contact us about this topic, please email JSNA@lincolnshire.gov.uk

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