Learning Disabilities (LD)
Key Facts for Somerset
- In 2014 it was estimated that there were 2,036 people aged 18 and over with a moderate to severe LD living in Somerset.
- Of these, 441 people aged between 18 and 64 years are estimated to have a severe LD.
- Over the next five years the number of people with a learning disability living in Somerset is projected to increase by 2% for all age-groups and 13% for those ages 65 years and over.
- Based on current prevalence estimates and ONS population projections, the number of people aged 18 and over in Somerset with some form of LD is projected to rise by around 10% to almost 11,000 by 2030, and the number with a moderate or severe form of LD to increase by 5% to 2,139.
- Approximately 55% of people with a LD also have an Autistic Spectrum Condition and challenging behaviour
- In 2012, 37% (1,430) of children with a Special Educational Needs (SEN) statement or Schools Action Plus had Learning Disabilities as a primary need.
- People with LD die a lot younger than the general population. Based on the 2008-11 period, the median age of death for people with learning disabilities in Somerset is 61. However, this is slightly, but not significantly younger than the corresponding England average (56).
- Almost two in three of patients with LD eligible for an annual health check received one
- The proportion of adults with LD who are in stable accommodation is slightly higher in Somerset (79.7%) than in England (73.5%) or similar local authorities.
- At 31st March 2013, Community Teams in Somerset supported 1,703 people with a learning disability.
- Compared with the national average, Somerset has a significantly higher rate of known adults (aged 18-64) with LD receiving community services but a significantly lower rate of known adults with LD receiving day care services.
- People with LD can make a valued contribution to the economy and society. In 2012/3 Somerset had a lower rate of adults with LD in employment, 4.7% compared to the England average of 7.0% and average for similar local authorities of 6.2%.
To see national profiles and data, see People with Learning Disabilities in England 2015.
Health Needs Associated with LD
Many people with learning disabilities have a higher level of health need than in the general population:-
- Epilepsy occurs in about one third of people with learning disabilities and the likelihood of seizures increases with the severity of the learning disability. Often seizures are complex and difficult to control and specialist input is required. Antiepileptic drugs often have side effects, particularly with long-term use, and require regular review
- Autistic disorders also occur very frequently with learning disability and this additional disability will have a considerable effect on the functioning and needs of the individual. People with autism have impairments in communication, social behaviour and imagination
- Mental health problems, including behaviour that challenges services, occur in up to 50% of people with learning disabilities. Depression and withdrawal are frequently not diagnosed or treated. The prescription of psychotropic medication should be based on the advice of a psychiatrist with special knowledge of learning disabilities
- Particular conditions, such as Down’s syndrome, carry an increased risk of certain health complications such as cardiac disorders, respiratory problems, thyroid disorders and hearing impairment
- Older people with learning disability are particularly at risk of dementia, especially of Alzheimer’s disease if they have Down’s syndrome
- Up to one third of people with learning disabilities have an associated physical disability, frequently including cerebral palsy. This may put them at risk of postural deformities, hip dislocation, chest infections, eating and swallowing problems, gastrooesophageal reflux, constipation and incontinence
- People with learning disabilities experience a high rate of under-detection of visual and hearing problems. About one third of people with learning disabilities have poor eyesight. Over 40% have a problem with hearing and the prevalence of both visual and hearing loss increases with age
Care and Support Service Provision
In January 2014 Somerset County Council (SCC) and the Somerset Clinical Commissioning Group (CCG) published their Joint Commissioning Intentions For Adults with Learning Disabilities 2014-2017. In particular, it reviews current service provision and examines where we want to be in the future.
To meet future demand, and to develop services in line with the national and local agendas, this document sets out our vision for services for adults with learning disabilities, built upon five broad themes:-
- People with learning disabilities and their families will have more control over their services
- People with learning disabilities and their families can make more day to day choices
- People with learning disabilities are helped to have the same opportunities as everyone else
- The buildings people live in are high quality and fit for purpose
- Services are good value for money
Extracts from the document relating to health and wellbeing are provided below.
GP Health Checks
All people with a learning disability should be registered with a GP and since 2009/10 all GPs in Somerset have been able to sign up to provide an enhanced service for people with LD. This is designed to encourage practices to identify patients aged 18 and over with the most complex needs and offer them an annual health check. The objective of this service is to target people with the most complex needs and therefore at highest risk from undetected health conditions (usually people with moderate to severe LD). To this end regular health checks are now available to ensure that the LD population receive appropriate diagnostic and treatment services. During the 2012/13 financial year, 65% (1,407 out of 2,198) of people eligible for an annual health check received one.
Specialist services for people with LD are provided through the Somerset Partnership NHS Foundation Trust, working in an integrated way through integrated Community Teams for Adults with Learning Disabilities (see below). There will be opportunities to re-focus the work of the Somerset Partnership service over the life of these Intentions, emphasising even further the need to ensure full and effective access for people with a Learning Disability to all other mainstream health services.
Community Team for Adults with Learning Disabilities
Community Teams for Adults with Learning Disabilities (CTALDs) are integrated health and social care teams which provide assessment, care management/care co-ordination, therapeutic intervention and health professional support for people with learning disabilities. Somerset Partnership Foundation NHS Trust employs the health staff who work within the teams, and the County Council employs all other team members.
Rapid Intervention Team
The Rapid Intervention Team (RIT) has been established to provide expert professional support, advice and guidance on complex cases. It is a community-based assessment and treatment team whose main aim is to support people to remain in their own home whilst experiencing a crisis. Within Somerset we do not have any specialist learning disability Mental Health facilities. The RIT, along with support from the CTALD, enables people who are experiencing a mental health breakdown to use local mainstream Mental Health Services.
CTALD members are also responsible for Carers Assessments. The outcomes of these have implications on service provision. Within Somerset we have 7 voluntary lead carers who run Carers Forums who are supported by a paid Carer Coordinator. There are also a small number of local groups run by Mencap and an independent countywide group – the Parent Carers Alliance.
Person Centred and Outcome Based Commissioning
Historically, most commissioning activity has been based on the contractual requirement to provide defined input, such as the number of hours or type of service to be provided. Measuring the real benefits of services to customers in this way has proved difficult – it can provide information on the volume of activity that was delivered, not what difference it actually made to customers. There is now a shift in emphasis towards commissioning for specific outcomes that services will help people to progress and achieve individual outcomes, as well as those “whole service” outcomes that we expect services to meet for all customers.
We also need to consider opportunities for the personalisation of services, thorough the uses of personal budgets, in everything we do, and we have therefore set a target of 70% of customers having a personal budget by the end of 2014.
This will be applied across all services for customers with learning disabilities with the exception of residential and nursing care. For those services where we cannot currently offer a personal budget we do everything we can to maximise choice can control for the customers who use these services.
The whole ethos of provision for adults with learning disabilities must be about maximising independence. This needs to be done in a very person centred way that focuses on progression, not a “one size fits all” approach. There are barriers that prevent this, one being the incidence of hate crime and the insecurity this brings with it.
Research conducted by Mencap in 2010 indicates that incidents levels of hate crime against people learning disabilities may be significantly higher than statistics currently suggest.
The intention is to promote the needs of people with learning disabilities within wider work on Community Safety; for example, Avon & Somerset Police ‘Safe Places’ initiative that launched in February 2014, anti-bullying initiatives and awareness of Police Community Support Officers (PCSO’s).
- Service outcomes to include developing ‘Safe Places’ skills and awareness
- Promoting a positive risk taking culture among all stakeholders, supported by appropriate commissioning and contracting arrangements
- Commissioned services to have appropriate regard to safeguarding, including appropriately trained staff, policies, and procedures as identified through commissioning and contract arrangements
Approximately 75% of employment support is currently directly provided by Somerset County Council though the Aspire service, with the remainder delivered by Dimensions and specialist expertise on self employment delivered by the Foundation for people with Learning Disabilities.
Over the last 18 months we have remodelled employment support services to ensure that they are focussed on supporting people to achieve and sustain employment and self-employment following the development of an Employment Strategy in July 2013. This remodelling was undertaken after a significant gap between the “work preparation” model previously utilised and that which national evidence identified was needed in the future to enable people to both obtain and sustain employment.
The aspirations of young people in transition are very different from those of people with learning disabilities who have historically been supported through day services. This includes an expectation by young people in transition and their carers that they will be supported to obtain paid employment, and realise the benefits that this brings. There is also a significant number of people who currently receive services, whose aspiration is to obtain paid employment.
The overall target of the strategy is for 20% of adults with learning disabilities to be in paid work of 16 hours or over a week by 2025.
However, we recognise that this represents a very significant increase over a long period of time and, therefore, a number of milestone objectives will be developed within the Delivery Plan including targets to support them. We expect the type of work people enter into, their working patterns and the split between
employment and self employment to reflect the working patterns of Somerset.
People with learning disabilities have limited access to public transport. This needs to change if we are to follow our aim of promoting independence and access to community resources.
- We need to support services that increase individual’s independence in travel
- We need to continue to support travel training to promote independence and enable people to access work and services
Community access and participation
To enable people with learning disabilities to have an independent life, we must increase community access and participation. We will commission services that:
- Deliver an increase in numbers of people accessing community resources
- Realign the capacity and configuration of building-based day services as the number of people accessing them changes over time.
- Work with public health to ensure that ‘Universal’ community resources are accessible - for example, leisure, Active Living Centres
We will continue to increase the proportion of people who have their needs met in the community and reduce our reliance on long-term residential care. This includes intentions to:-
- Improve access to mainstream health services, enabling those with the most complex health needs to remain in their own home or continue with care and support packages
- Work with GP surgeries, hospitals and other health services to ensure that the particular needs of people with a Learning Disability are taken into account in their services, for example by providing longer appointment times and appropriate signage.
- Ensure that all adults with a learning disability have the opportunity to have a Health Action Plan completed with assistance from a health facilitator if required
- Ensure that eligible adults with a learning disability have an annual health screen provided by their general practice
- Ensure timely access into mainstream mental health services for adults with a learning disability and concurrent mental health problems
- Provide support to those adults with a learning disability who require pre- planned hospital admission
- Increase range of health promotion/disease prevention programmes tailored to the needs of people with learning disabilities
- Ensure that the wider primary care community (dentists, pharmacists, physiotherapists, podiatrists, optometrists etc) is demonstrably addressing and promoting the better health of people with a learning disability
- Ensure that people with learning disabilities and their families/supporters are supported to fully contribute to and participate in discussion as well as in the planning prioritisation and delivery of services generally
- Facilitate access to mainstream services whilst in hospital and appropriate in-reach or outreach services to facilitate discharge
- Provide an appropriate service response to support people with early onset dementia
- Provide an appropriate service response to support parents with a learning disability
- Develop opportunities for the introduction of Individual Health Budgets, enabling greater choice and personalised care and support for individuals and families.
Further work will also be undertaken to identify and develop opportunities to ‘fine tune’ health services to better meet the needs of people with LD. Parallel work with mainstream health providers will include formalising their obligations to tailor services and ensure ease of access for people with LD by developing existing contractual mechanisms and incorporating specific requirements to make reasonable adjustments to services.
As the service model changes to meet the requirements of these Intentions the wider health community, including specialist, primary and community health services, will need to adjust their working practices to accommodate the changing service model. The extent and nature of such adjustments will be the subject of further work aligned to these Intentions.
Further work is required to ensure that health inequalities for people with learning disabilities are reduced. This will include reporting on, and improving as necessary, cervical and breast screening rates and ensuring regular hearing and vision checks.
It is known that people with learning disabilities (LD) can be at risk of earlier death and poorer health although life expectancy is increasing. Updating our information on those with learning disabilities is a priority. A gap is also noted with respect to adult ADHD.
For data and information relating to ,accommodation for people with learning disabilities, please see our Housing and LD webpage.