NHS Warwickshire
Warwickshire County Council
Joint Commissioning Strategy for People with a Learning Disability 2007-2010
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Executive Summary
This Joint Commissioning Strategy for People with a Learning Disability has been jointly developed by Warwickshire County Council (Adult, Health and Community Services) and Warwickshire Primary Care Trust (NHS Warwickshire) The overarching purpose of the strategy is to improve the outcomes for people with a learning disability. Effective commissioning is a prerequisite to deliver improved services for people across Warwickshire. There are substantial areas of health and social care services for people with a learning disability where joint commissioning could be applied to deliver more effective services. The strategy is a major step in joining up commissioning for people with a learning disability. It takes full account of the national policy drivers and of the local context for services. The strategy sets out our vision for services, the underpinning values and our commissioning priorities for the next three years. These commissioning priorities have been decided as a result of an analysis of needs and of current services. Full account has been taken of what people with a learning disability and their families have said about services and the work of the Learning Disability Partnership Board. Our strategic commissioning priorities are: A Place to Live We will commission a range of accommodation and support to enable people to live as independently as possible. Good Health We will work with mainstream health providers to ensure that people have equal access to quality health services. We will commission specialist heath care service to enable people to remain in their home. A Fulfilled Life We will commission services that are based around the individual and promote their inclusion into society. Support to Family Carers We will commission services to support family carers in their caring role and increase their empowerment at all levels. Joined Up Services We want people with a learning disability to experience seamless services from health and social care.
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More Choice and Control We want to put people with a learning disability in control of their own services, giving them more choice and a stronger voice. Under each of the above strategic priorities a number of key actions are identified to deliver the required change. A detailed implementation plan will be developed which will be overseen by the Joint Chief Officers Commissioning Group.
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Introduction
This Joint Commissioning Strategy for People with a Learning Disability has been jointly developed by Warwickshire County Council (Adult, Health and Community Services) and Warwickshire Primary Care Trust (NHS Warwickshire) The overarching purpose of the strategy is to improve the outcomes for people with a learning disability. It has been developed to enable a planned and co-ordinated approach to the development of services. It will be used as an integral part of both the County Council and the PCT decision-making and planning processes. It needs to be considered alongside the Local Delivery Plan, the Local Area Agreement, the Adult, Health and Community Directorate Plan, the Supporting People Annual Plan, other Joint Commissioning Strategies and individual service commissioning strategies. Warwickshire is committed to involving people with a learning disability, family carers and all other stakeholders in the planning of future services. In developing this strategy full account has been taken of national consultations and of what local people with learning disabilities and family carers have told us. The work of the Learning Disability Partnership Board and its associated groups has been used as a basis for much of the document. The joint commissioning strategy covers all services commissioned for adults with a learning disability by NHS Warwickshire and the County Council. This includes people with an Autistic Spectrum Disorder. It also takes account of younger people with learning disabilities who are in transition.
Background
Commissioning Effective commissioning is a prerequisite to deliver improved services for people with a learning disability across Warwickshire. Our definition of commissioning is as follows: Commissioning is the process through which organisations identify the needs of the population and make prioritised decisions to secure care to meet these needs within available resources. It involves the strategic planning of services followed by procurement and monitoring of service delivery. Commissioning is undergoing a period of significant change. Commissioning a Patient-Led NHS (2005) set out a new framework. Primary Care Trusts now have a responsibility for the overarching strategic planning and commissioning framework for health services but, within this, GP practices will increasingly take on responsibility for commissioning services that meet the health needs
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of their local populations under practice based commissioning. NHS regional procurement is also being developed. The local authority, led by the Director of Adult Social Services has a strategic responsibility for the planning, commissioning and delivery of social care. The local authority is also responsible for ensuring a wider approach to commissioning beyond health and social care through partnership vehicles such as the Local Area Agreement. The is also an expectation that there will be further integration of resources through the joint commissioning of health and social care and an increased use of flexibilities under the 1999 Health Act. Joint Commissioning in Warwickshire In Warwickshire the establishment of a Warwickshire wide Primary Care Trust in October 2006, co-terminous with the local authority, offers the opportunity to put in place effective joint commissioning arrangements across the two organisations. The vision for joint commissioning in Warwickshire over the next 2-3 years is for ever closer working. Principles for joint commissioning and shared service outcomes are being developed. This joint commissioning strategy together with the restructuring of the commissioning functions within both organisations is a major step in joining up commissioning for people with a learning disability. There are substantial areas of health and social care services where joint commissioning could be applied to deliver more effective services and better outcomes for people with a learning disability. It is also important that mainstream services meet the needs of people with a learning disability and enable them to have full access to their local community. Joint commissioning will therefore work closely with other commissioners at county-wide and locality level.
Our Vision for Services for People with a Learning Disability
Our vision is for people with a learning disability to achieve as inclusive a life as possible, with the support of health and social care services, families and the wider community, and for them to be offered opportunities and choices in their lifestyle afforded to other people. The needs of family carers for support are also fully recognised. Values There are four key values that underpin our vision. These values are in line with ‘Valuing People’, the Government’s strategy for people with a learning disability.
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Rights - people with a learning disability have the same rights as others. These include the right to education, to employment, to vote and to express their opinions. We will treat people with learning disabilities as individuals with respect for their dignity. We will challenge discrimination on all grounds. Independence - while people’s individual needs will differ, the starting point should be one of promoting independence. We will provide support in ways which maximise independence rather than increasing dependence. Choice - we believe that everyone should be able to make choices. People with a learning disability want a real say in their lives and in choices such as where they live, what work they do and who supports them. This includes people with severe and profound disabilities. We will provide the right help and support to enable everyone to make important choices and express preferences about their lives. Inclusion - people with learning disabilities should be part of the mainstream and participate in their community. We will enable people to do ordinary things, make use of mainstream services and be fully included in their local community.
National Drivers for Change
In producing this strategy we have taken account of the all the relevant national policy guidance. In March 2001 the Government published the White Paper Valuing People: A New Strategy for Learning Disability for the 21st Century. This set out a new vision and a commitment to improving the life chances of people with a learning disability. A review of progress made over the past four years Valuing People - the Story So Far found that things are beginning to change for people but that there is still a long way to go. Improving the Life Chances of Disabled People a joint report from the Department for Work and Pensions, the Department of Health, the Department for Education and Skills and the Office of the Deputy Prime Minister, sets out a vision for improving the life chances of disabled people. By 2025 disabled people should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society. Our Health, Our Care, Our Say: a New Direction for Community Services the Government White Paper published in January 2006 aims to achieve four main goals: • • better prevention services with earlier intervention more action to tackle inequalities and improving access to community services 6
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more support for people with long term needs more choice and a louder voice for people.
The Supporting People Programme, the Government’s long-term policy to provide housing related support services to help vulnerable people live independently, is a key element in the commissioning of services for people with a learning disability. The Association of Directors of Social Services Report Pressures on Learning Disability Services (October 2005 ) highlighted the significant spending pressures on social care and NHS budgets across all Local Authorities and Primary Care Trusts. The reasons identified included: Significantly increased numbers of learning disabled people, children and adults in the population. Children surviving into adulthood with major disabilities and complex needs Adults are living longer and surviving into older age Capacity of family carers to care for the extent and diversity of needs is limited Significant increases in the costs of specialist services for people with high dependency, complex needs and challenging behaviour. A national learning disability audit of NHS and independent healthcare provision is currently being carried out following on from two recent investigations by the Healthcare Commission. The outcomes from this national audit may well have wider policy implications for services. More recently the concept of self directed support has become increasingly important. This includes not only direct payments for social care services, but also models such as "in control" which aim to allow individual self-assessment to inform a personal resource allocation - individualised budgets. The overall aim is to put commissioning power in the hands of service users, their families and others who support them rather than presenting people with a menu of previously commissioned service responses.
Local Drivers for Change
There are a number of key local drivers for change that need to influence how we commission services for people with a learning disability in the future. Organisational Change Recent organisational change in Warwickshire offers a real opportunity to further develop joint working in services for people with a learning disability. The re-structure of the County Council resulting in the establishment of the Adult, Health and Community Services Directorate brings together a wider range of services to enable further working across service areas to the benefit of people with a learning disability. As part of the Directorate, the new Strategic Commissioning and Performance Management Division will bring
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together the Supporting People Programme and the adult commissioning functions. Also from April 2007 the local authority will have a specialist management structure in place for its learning disability assessment and care management services and is separately restructuring its provider services to enable a more locality focused approach to service delivery. The establishment of NHS Warwickshire will greatly enable a coherent approach to joint commissioning that was not achievable with three Primary Care Trusts, with one Local Delivery Plan across the county. The new commissioning directorate within NHS Warwickshire will give a focus to commissioning activity and the opportunity to align commissioning process across the two organisations. The recent establishment of the Coventry and Warwickshire Partnership NHS Trust as a provider organisation further clarifies the distinction between service commissioners and service providers. Service Re-design and Modernisation Both organisations need to re-design their services in order to deliver national policy imperatives and deliver improved outcomes for service users. In many instances doing this in partnership can result in more effective use of resources and a more streamlined service for service users. There is a recognised need to further modernise services to enable a truly personalised approach, giving more control and more choice to service users and carers over the services available to them. The key aim for people who have a learning disability and their family carers is that they should receive help that is: • Appropriate to their personal needs • Agreed with them • Available when they need it • At the highest possible quality Inspection and Regulatory Requirements The Commission for Social Care Inspection (CSCI) 2005-06 record of performance assessment for adult social care in Warwickshire highlighted the need for comprehensive joint commissioning plans based on a thorough needs analysis supported by a quality assurance and contract compliance framework. The legal requirements from the CSCI related to the improvement of services, standards and quality are also important drivers in service development. Equity and Consistency The legacy of having three Primary Care Trusts in Warwickshire means that services have developed differently across the three localities. This means that people with a learning disability in the county have differing access to different services depending on where they live. With the establishment of NHS Warwickshire, services can now be commissioned on a county-wide basis. Best practice needs to be rolled out across the county and where necessary some services will need to be de-commissioned.
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The Supporting People Programme A significant amount of housing related support for people with a learning disability is commissioned through the Supporting People Programme. The current spend is around £3m. Any changes to this as a result of the strategic review of the programme will have significant implications for services and particularly for adult social care funding. NHS Continuing Healthcare New guidance is expected soon from the Department of Health on NHS Continuing Healthcare - the system of assessment to determine eligibility for full NHS funding of long-term care. The implementation of the guidance is likely to have implications for Warwickshire in relation to services to people with a learning disability. Resource Issues NHS Warwickshire and the Adult, Health and Community Services Directorate are both facing financial challenges. The significant resource constraints give an imperative to both organisations to work together to reduce duplication, redesign care pathways and achieve value for money. Over the past few years, in line with national trends, the three former Primary Care Trusts and the Local Authority have spent more each year on Learning Disability Services than budgeted for. As such there has therefore been increased investment in Learning Disability Services. However this investment has not been made in a planned way and may not have always been used in ways that achieve best value for money. The two areas where there have been major increases in spending are specialist health care in hospital settings and individual packages of support. The current situation is that demand currently outstrips the available resources of both the Local Authority and the Primary Care Trust. The total expenditure by both organisations is approximately £40m, roughly split 50/50 between the two. The current situation of overspend is exacerbated by the more complex needs of many people who will require services in the future and need to re-design many services that are no longer appropriate.
Key Factors Influencing the Commissioning Strategy
In developing this strategy and our strategic commissioning priorities, alongside the national and local drivers we have also: • Listened to what people with a learning disability and their family carers have said about services • Taken full account of the work of the Learning Disability Partnership Board • Undertaken an analysis of needs and service demands
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Views of People who use Services and Family Carers
We are committed to engaging users and family carers in the development of their own individual services and in service planning more widely. National consultation exercises tell us that people want: • • • • • • Choice about what services they use Information to help guide them in their choices Individualised services that meet their specific needs and wishes Local services that are easily accessible Independence so that they can live their lives as they choose Support to keep them healthy
In developing this strategy we have taken full account of the views of local people who use services and their family carers. Most recent local consultations with people with learning disabilities and family carers in Warwickshire including the short breaks review, customer first feedback and the day services review, indicate that people are generally satisfied with the services that they receive and that they want to keep what they have already got and, in some cases, have more of existing services. The Learning Disability Partnership Board The Learning Disability Partnership Board was set up in 2001 to oversee the implementation of ‘Valuing People’ in Warwickshire. Members include seven people with a learning disability, seven family carers and fourteen representatives from organisations providing services. It has various groups working on particular issues that include: • • • • • • • • • Health Transition Day Services Jobs Doing Things and Seeing Friends Choices and Voices Housing Person Centred Planning Improving Services for people from black and minority ethnic communities
There are also forums for carers, users (New Ideas County User Forum) and providers. A key role of the Board is to influence all relevant agencies not only those directly involved in health and social care. The plans and ideas developed by the groups and forums have been included throughout this strategy and have been particularly important in shaping how services need to change in the future.
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Needs Analysis
In order to effectively plan services it is important to understand the current and future needs of people with a learning disability. What is meant by the term 'learning disabilities'? Valuing People states that “Learning Disability includes the presence of: 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”. ‘Learning disability’ in itself is not a clinical diagnosis. Rather, it is a generic term that describes a vast range of abilities and support needs. In up to half of those people who have such disability the specific cause remains unknown. The needs of people with learning disabilities vary according to the severity of a person’s disability – and often the person’s social environment and circumstances. However, in general people with such a disability will find learning much harder than others and may find social situations much more complex than others to interpret and understand. For those people who have high support needs, it is likely they will experience significant communication problems, and often a physical disability along with health conditions which may require intensive support from others. Learning Disability Current Prevalence Rates There are no reliable official statistics for the total numbers of people in the UK who have learning disabilities. Prevalence data for Warwickshire estimate that currently there may be around 2,000 people with severe learning disabilities and nearly 8,000 people with moderate disabilities. The Warwickshire Learning Disability Database (LDD) collates information on people with moderate to severe learning disabilities. Currently a total of around 1,500 adults and children living within Warwickshire are registered on the LDD. Although this figure falls short of the numbers suggested by national prevalence rates it is not thought that there are significant numbers of people with learning disabilities that are not known to statutory services. There are various possible reasons for this difference. Further work is underway to ensure that all those people known to services are included in the figures. The following information comes from the LDD for 2005 • • There are approximately 100 people who live out of county. There are a total of 63 people across the County from Black and Minority Ethnic (BME) groups representing approximately 4% of the
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total registered. Over 50% of those registered from BME groups are Asian or Asian British. • • • • Nuneaton and Bedworth district have the largest number of people registered on the LDD (30.6%). There are 125 people aged between 14 and 18. There are 149 people aged over 60. There are 110 young people and 133 people aged 18 and over who have been diagnosed as being on the autistic spectrum, have Aspergers Syndrome or autistic tendencies. 58% of children and young people and 37% of adults on the database identify behaviours which challenge. A total of 341 people aged 60 or more are caring for people with a learning disability, about a quarter of who are single carers.
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Learning Disability Future Prevalence Rates It is difficult to accurately estimate future prevalence rates. Several factors are likely to contribute to changes in the profile of adults with learning disabilities over the coming years. One estimate, using methods developed by Emerson and Hatton (‘Estimating Future Need/Demand for Supports for Adults with Learning Disabilities in England’; Institute for Health Research June 2004), indicates that by 2011 there may be 1,903 people with a serious learning disability aged 16-64 and 220 aged over 65 in Warwickshire. However even if we cannot accurately predict the exact numbers of people who will need services in the future, it is clear from all available research that the numbers of people with learning disabilities will increase and that their support needs may well be higher than those of the people we currently serve. These predicted population changes will challenge all statutory agencies who will be supporting these people and who will need to develop better longerterm service and investment planning. At a local level the Transition Group works with all children with a learning disability at age 14 or over in Warwickshire schools to plan for their future needs. Future Needs for Services Based on existing information about future prevalence rates and other work carried out in relation to demand for services, the following factors need to be taken into account when planning for the future: • The increase in the numbers of children living into adulthood who have severe and complex disabilities. If all the young people currently on the 12
database remain on it ,there could be at least 30 eighteen year olds who may need adult services in 2007. • • The increased life expectancy of people with a learning disability The increase in the proportion of younger adults from the Pakistani and Bangladeshi communities, who research has shown have a higher prevalence rate of learning disabilities There is likely to be an increase in the numbers of adults with autism There is a significant number of people with Down’s Syndrome who have or may develop Alzheimer’s disease The increasing expectations of people with learning disabilities and their family carers.
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Further details of the needs analysis are include in Appendix 1
Service Analysis
In order to commission appropriate services in the future we need to understand the pressures and challenges in current service provision. Housing Information from the Learning Disability Database Annual Reports (2005) showed that most people with learning disabilities in Warwickshire live either in residential or nursing care (397 people: 36% of total) or with their parents (375 people: 34% of total). Currently 75 people have been identified as needing accommodation over the next 3 years plus a possible 35 people who now live out of county. The traditional model of residential services presents problems, as it is often difficult to match the assessed needs of individuals to vacancies. The most frequently requested housing options are for single or shared tenancies and for small group living (3-5 people). In 2005, Adult Social Care Services were aware of 19 people with learning disabilities living in registered or unregistered small homes that could be considered suitable for inclusion in a formal Adult Placement Scheme. There are currently 100 Warwickshire people living in services out of County the majority in registered residential home settings. An audit of Warwickshire people who are out of area is currently underway. From the above information there is a predicted shortage of suitable accommodation. Even though the number of people living in tenancies has grown significantly between 2003-5, with 238 people in supported living in 2005 (22% of the total) there is still a further requirement for more flexible accommodation to meet a wider range of needs.
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Generic and Specialist Health Services In Warwickshire work has been undertaken to ensure that people with a learning disability have equal access to health services. This includes work to ensure that people with learning disabilities are identified on GP registers, development of the link nurse and acute liaison nurse roles. However there are still barriers to people with a learning disability accessing NHS services. Some people with learning disabilities have additional and complex needs that require the support of a range of specialist services. Specialist Health provision is currently provided by Coventry and Warwickshire Partnership NHS Trust. These services include: • • • • • • Respite Services Community Teams Regional Forensic Services In patient assessment and treatment beds Specialist Therapies Supported Accommodation
Currently there is no outreach or out of hours provision across the county to support people who are labelled as having challenging behaviour or who have an episode of acute mental ill health. This frequently results in people having to leave their own home and be admitted to hospitals such as Brooklands, Lea Castle or to residential placements as their living situation breaks down. Analysis of current admission activity to Brooklands indicates that there are more people being admitted for assessment and treatment than at any other time over the past five years. We need to increase the availability of community resources to support people at a much earlier stage in order to prevent unnecessary admissions. Day Services and Employment The majority of people with a learning disability who use services in Warwickshire currently have some type of support during the day. Some of this support is provided through day services managed by the local authority, NHS or the independent sector. Currently about 500 people access local authority day services, which are provided from seven broad localities. Other support during the day is also provided on an individual basis as part of care packages. Over recent years local authority provided day services have been developing in line with a more individual approach. This re-design of services needs to continue to ensure that the joint resources currently committed to day services are focussed on providing people with a learning disability with new opportunities to be included in their own communities and to lead full and purposeful lives. Employment, on a voluntary or paid basis, offers people friendships, self worth and a sense of purpose. A recent exercise to quantify the numbers of learning disabled people in work has found that in April 2006, 119 people were in paid employment, 55 doing voluntary work and 40 people undertaking 14
work experience. This equates to about 12% of people on the Learning Disability Database aged between 18 and 60. This figure is similar to other comparable authorities. In order to support people to find and maintain employment there is a dedicated service to support people run by the local authority. There is also a range of work experience and training opportunities across the county and some care providers support people to find work. However many people with learning disabilities in Warwickshire still do not have an opportunity to work. Research done by users in Warwickshire, ‘In Our Shoes’, identified the following barriers to work: • • • • • The benefits system Employers’ knowledge and attitudes Need for people to develop work skills Limited number of social enterprises Transport problems
Support to Family Carers A county-wide review of bed based short breaks was carried out in 2004-5. At that time there were 277 adults in Warwickshire using services, each receiving an average of 38 nights per year. The review showed that the majority of people were happy with the service they received but were less positive about being offered a choice of respite services, the information they received and their involvement in planning and reviews. Recommendations from the review are being taken forward. A new respite service has already been developed in Stratford and an increase in capacity in Nuneaton and Bedworth has been agreed. A carers support service is commissioned and specialist workers are carrying out carer assessments, reviews and future planning. A review of respite provided by the NHS resulted in additional provision to cover the north of the county which opened early in 2007. Joined Up Services The need for the NHS and local authority to work more closely together in the delivery of services is a priority raised by family carers. Some collaborative work does take place between health and social care staff. For example the multi-agency Resource Allocation Panels seek to ensure that decisions about service packages are taken jointly by health and social care. However the fact that key NHS and social care professionals are managed and located separately from each other makes a fully integrated approach to the assessment and provision of services to people difficult to achieve.
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Choice and Control Direct payments is one existing way in which people can exercise more choice and control over their services. The number of direct payments made to people with learning disabilities in Warwickshire has increased from 6 in 2002 to 41 at the end of November 2006. However the Warwickshire figure is low compared to other authorities. In 2005, Warwickshire had 16 learning disabled people on Direct Payments whilst the average for all English local authorities was 21 and for Shire Counties, the figure was 43. The target for March 2007 is for 60 people with learning disabilities to be using direct payments. The use of advocacy is another way in which people can be supported to take more control. Advocacy is currently organised on a countywide basis to encourage and develop self-advocacy, participation and enable task-based advocacy. New Ideas and Advocacy Alliance are currently contracted to provide this service. Advocacy Alliance also provides a half time advocate specifically for family carers. Advocacy support is currently funded via the Learning Disability Development Fund.
Strategic Commissioning Priorities
Following on from our analysis of needs, services and service demands, and our understanding of what people with a learning disability and their family carers have told us they want, we have identified the following key strategic commissioning priorities.
A Place to Live
We will commission a range of accommodation and support to enable people to live as independently as possible. Housing is of central importance in people’s lives. People with a learning disability can live successfully in different types of housing and with the different types of tenures. The provision of appropriate support is integral to ensuring that people can live more independently. We want people to live in supported living arrangements rather than residential care settings. We also want to be able to support people who currently live out of county to return should they wish to and to prevent people who wish to stay from moving out of the county. We will therefore: o Continue to commission individual and shared accommodation units with individual support provided from one staff team o Commission a range of support options to enable people to live independently, including occupational therapy support
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o Commission services where specific needs have been identified such as older people, people with mental health needs, people requiring nursing care o Reinforce and further develop the strategic links with the Borough Councils’ Housing Departments to ensure that a range of housing options is available o Commission an Adult Placement Scheme that will support people identified as requiring this model of support, including looked after young people with learning disabilities who wish to remain with their foster family. o Complete the review of people who are living outside of the county to inform commissioning plans
Good Health
We will work with mainstream health providers to ensure that people have equal access to quality health services We will commission specialist heath care services to enable people to remain in their home Good health is a prerequisite for achieving independence, choice and inclusion. However health outcomes for people with learning disabilities fall short when compared with outcomes for the rest of the population. In order to improve the health outcomes for people with a learning disability and to provide access to more specialist health services for those who have more complex needs we will: o Ensure that everyone who wants one has a health action plan o Review the acute liaison nurse role to ensure it is effective o Ensure that GP practices understand the needs and provide a quality service to people with a learning disability o Commission a range of information and health promotion materials that are accessible to people with a learning disability and their family carers o Commission Assertive Outreach type services across the county both to prevent crises occurring and to support people who are in crisis to remain in their home o Ensure that the specialist treatment and assessment services we commission are of good quality provide a rehabilitative service and foster social inclusion
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o Review the joint working protocols with Mental Health Services to ensure people with a learning disability access mental health services as appropriate o Ensure there is a process in place whereby the continuing health care needs of people with a learning disability are appropriately assessed and met.
A Fulfilled Life
We will commission services that are based around the individual and that promote their inclusion into society We will ensure that everyone who wants to work is enabled to do so Taking part in community activities, developing a range of relationships, learning new skills or interests are all things that can lead to a fulfilling life. Many people with learning disabilities have had limited opportunities to take part in their local community, participate in wider social networks or to learn new skills. Employment, on a voluntary or paid basis, offers people friendships, self worth and a sense of purpose. In order for people to be supported to live a more fulfilled life we will: o Commissioning support services including travel support, to enable people to be involved in their local community rather than using building based day services o Determine the need for any specific provision for people who have particular needs in relation to their health or behaviour o Commission drop-in facilities and low-level support services for people who need less support to achieve independence o Actively engage with other commissioners to improve access to mainstream for people with a learning disability. In order to ensure that everyone who wants to work is enabled to do so we will: o Commission an employment support service that offers an equitable service across the county o Develop relationships and partnership activity with training and employment agencies to increase work experience and training opportunities
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o Explore the option of using social firms to provide employment and training opportunities o Progress work with local authorities and the PCT, as major employers, on how people with a learning disability can achieve employment with appropriate support
Support to Family Carers
We will commission services to support family carers in their caring role and increase their empowerment at all levels Family Carers make a vital contribution to the lives of people with learning disabilities, often providing a significant amount of the support they need. The support and commitment of carers is critical in enabling people with learning disabilities to achieve independence, choice and inclusion. Family carers need regular and frequent short breaks provision along with day/employment opportunities for the person they care for. We need to continue to improve support to family carers. We will therefore: o Ensure equity in the availability of residential short breaks provision across the County o Evaluate the pilot of the mixed approach – bed based and outreach and implement recommendations o Improve the empowerment of family carers at an individual level by providing information and training in areas such as the new Mental Capacity Act and self directed support o Improve the involvement of family carers in the commissioning of services
Joined Up Services
We want people with a learning disability to experience seamless services from health and social care People with a learning disability and their family carers say they want services to be more joined up. We need to commission integrated services for people with learning disabilities through effective partnership working between all relevant local agencies in the delivery of services. We will therefore: o Develop a single approach to the assessment of needs, building on the work of joint assessments
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o Review the role and functions of the community learning disability teams in order to develop a new service model across the county o Commission fully integrated community teams in the north and south of the county based on the new service model
More Choice and Control
We want to put people with a learning disability in control of their own services, giving them more choice and a stronger voice The rights of people with a learning disability need to be promoted. People with learning disabilities currently have little control over their own lives. They need help in order to achieve greater choice and independence in all aspects of their lives. They and their families should be fully involved in the planning, development and evaluation of services. Person centre planning is the foundation for this approach. The development of self directed support will put more control in the hands of service users and those who support them. In order to increase the choice and control that people have we will: o Ensure that people in priority groups have a person centred plan o Ensure that more people with learning disabilities have more control over the money that is spent on services for them and how it is used thorough the use of Direct Payments o Introduce individual budgets for people with a learning disability o Commission an effective advocacy service through the re-tender process in 2006-7 o Commission a new advocacy service from April 2007 in relation to the Mental Capacity Act 2005 (the Independent Mental Capacity Advocate –IMCA - Service) o Ensure that social workers, community nurses and other key professionals are highly skilled in person centred planning techniques and service design o Ensure that the Learning Disability Partnership Board is empowered to influence the strategic commissioning of services
Expected Outcomes
Our vision for people with a learning disability in Warwickshire is far reaching and if achieved it will mean that people will live their lives,based on real choices and meaningful involvement in decisions that affect them as full members of their communities. It will also mean that services will continue to
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change to support the individual needs of people with a learning disability and their family carers. There is a range of outcomes that we would expect to see if the vision is achieved: people from all communities receiving services that meet their individual needs and enable them to fulfil their own potential people having more choice and control over what they do with their lives on a daily and longer term basis more people in employment, living in ordinary housing and using ordinary services and facilities in their local communities more people engaged in the monitoring and planning of services family carers being supported in a range of ways more people in the community knowing about and respecting the rights of people with learning disabilities
Implementing the Joint Commissioning Strategy
With the recent formation of NHS Warwickshire it is now possible to develop a joint county-wide strategic approach to commissioning health and social care for people with a learning disability. This joint commissioning strategy is one part of an emerging integrated approach to commissioning. We recognise that some aspects of the strategy will need to be revised as the strategic direction in some areas becomes clearer. It will be particularly important to align this strategy with the Supporting People Annual Plan. A number of related service focused commissioning strategies (for example for day services) will also be produced. The joint commissioning function and related processes needs to be developed. The key priorities include: • • • • • Ensure all services have a contract or a service level agreement in place that is based on an outcome focused service specification Carry out further work on fee structures leading to a more standardised fee structure and clear value for money. Strengthen the performance management of contracts based on a quality framework, which includes appropriate outcome measures for both the individual who uses the service and the service as a whole. Identify organisation that are suitable to provide services and develop pre-placement agreements Work jointly with Coventry to analyse need and improve quality and value for money across the sub region
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Put in place a process to aggregate needs information from person centred plans Carry out work to better understand the market within which providers of learning disability services operate Refine the needs analysis and undertake a review of the Learning Disability Database for accuracy
A Learning Disability Joint Commissioning Implementation Plan based on a prioritised and planned approach will be developed to ensure a co-ordinated approach to the implementation of the Joint Commissioning Strategy. This will cover workforce issues, contractual arrangements, finance and market management. The Joint Chief Officers Commissioning Group will oversee the implementation plan. The Learning Disability Partnership Board will be the advisory group to the Joint Chief Officers Commissioning Group.
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Appendix 1 Needs Analysis
The mid-2005 population estimates report that the population of Warwickshire is 533,900. Of those 334,780 (63%) are aged between 18 and 64. The table below shows that, overall, Warwick District has the largest population, but that Nuneaton and Bedworth has the largest number of young people under the age of 18 and Stratford has the largest number of older people over the age of 65. Mid-2005 Population Estimates 0-17 18-64 North Warwickshire 13,100 39,300 Nuneaton and Bedworth 27,660 74,640 Rugby 20,720 56,180 Stratford-on-Avon 24,280 72,520 Warwick 26,760 92,040 Warwickshire 112,220 334,780
General Population Information
65+ 9,900 18,400 14,700 22,200 21,500 86,900
All ages 62,300 120,700 91,600 119,000 140,300 533,900
The 2001 Census revealed that, in Warwickshire, black and minority ethnic groups account for 4.4% of the population compared to 7.9% of the total UK population. The Indian ethnic group is the next largest group after White British, accounting for 2.4% of the population. There are 6,000 Irish people and a further 8,000 from Other White groups. Although Warwickshire is becoming an increasingly diverse community, the populations are unevenly distributed across the county. For example there are concentrations of people identified as Indian in Leamington, Rugby and Nuneaton but very few in North Warwickshire or Stratford. The Census also reported that there are 53,221 (10.5%) Warwickshire people providing unpaid care for a relative, friend or neighbour. This reflects the national average of 10%. Prevalence data indicates that there may be 1,800 people aged 16-64 with a serious learning disability in Warwickshire and a further 185 over the age of 65. There may be nearly eight thousand people aged 16-64 with a moderate learning disability. The chart below shows the number of people with serious learning disabilities who may be living in different parts of Warwickshire. This is based on the mid-2005 population estimates, which are the most recent figures available. As can be seen the largest numbers would be expected in Warwick District and the fewest in North Warwickshire.
Learning Disability Prevalence Rates
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Prevalence of people with serious learning disabilities in Warwickshire
2005
No. people with serious LD (prevalence) 500 400 300 200 100 0 N. Warks Nun & Bed Rugby 16-64 65+ Stratford Warwick 211 21 40 31 47 45 501 405 305 386
The Warwickshire Learning Disability Database [LDD] (formerly the ‘Special Needs Register’) is a person based information system that is used as a planning and an operational tool. The database is maintained on behalf of Warwickshire Primary Care Trust and the County Council Adult, Health and Community Services Directorate. All people with a learning disability aged 5+ years, living in Warwickshire, who are currently using or have previously used specialist services, are offered the opportunity to be included on the LDD. In addition, people for whom the county is responsible for providing a service, but who are currently using services outside the county can be included. The majority of people on the database would be classified as having a "severe" learning disability and it is unlikely that anyone with a moderate disability would now be recorded. However, it is possible that some former hospital residents who do not have severe disabilities but were "in the system” are included. Inclusion on the database is voluntary, but it is not thought that there are large numbers of people whose details are not recorded. The following information has been extracted from the 2005 Annual Reports. Total Numbers In 2005, the LDD had information about 207 children and 704 adults (aged 18+) with learning disabilities living in the North and 135 children and 419 adults in the South. Although the total number of adults on the LDD (1,123) falls short of the numbers with a serious learning disability suggested by the national prevalence rates, (nearly 2,000) it is not thought that there are significant numbers of people with learning disabilities who are not known to Warwickshire statutory services.
Information from the Learning Disability Database.
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Numbers of learning disabled children and adults on the LDD in 2005
350 No. people on LDD 300 250 200 150 100 50 0 N. Warks Nun & Bed 0-17 Rugby 18-59 Stratford 60+ Warwick
38 23 161 115 46 54 16 57 78 28 36 171 179 176 287
Numbers of children and adults with learning disabilities in Warwickshire 2005
Age 0-17 18-29 30-39 40-49 50-59 60-69 70-79 80+ Adults All ages % North Warks 38 38 44 46 33 15 7 1 184 222 15% Nuneaton/ Bedworth 115 73 79 79 56 31 13 2 333 448 31% Rugby 54 41 52 49 29 12 4 0 187 241 16% Stratford 57 45 39 48 47 17 9 2 207 264 18% Warwick 78 52 46 42 36 19 12 5 212 290 20% Warwickshire 342 249 260 264 201 94 45 10 1,123 1,465 % 23% 17% 18% 18% 14% 6% 3% 1%
As can be seen, the largest number of adults and children with learning disabilities live in Nuneaton and Bedworth (around one third of the County total). Prevalence data indicates that we would expect there to be higher numbers in Warwick District, but it may be that the larger number of young people in Nuneaton and Bedworth affects the overall totals. About a quarter of the people on the LDD are under 18 years of age.
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Numbers of children and adults with learning disabilities on the LDD between 2001 and 2005
1200 1000 Number 800 600 400 200 0 2001 2002 0-17 2003 18-59 2004 60+ 2005
The chart above shows that across the County, while the number of adults aged 18-59 has remained relatively constant over the past 5 years, the numbers of younger and older people has risen. There has been a 13% increase of people aged 0-17 and a 26% increase in the numbers of people aged 60 or more. Current research suggests that this trend is likely to continue due to better survival and longevity rates (see section on ‘Future Demand’ below). Ethnicity 97% of adults and 92% of children and young people on the LDD are White. Taking both adults and children together, Black and Minority Ethnic (BME) groups account for 4.3% of the people on the LDD, which is close to the proportion in the general population. Details of the 63 learning disabled people from Black and Minority Ethnic groups on the LDD are shown in the table below. Asians are the largest BME group, most of whom are Indian. The greatest diversity and largest number of BME groups is in the North of the county, (mostly in Nuneaton and Bedworth) where there are 13 adults and 11 children from BME communities. The largest concentration of learning disabled people belonging to the Asian group is in Warwick District where they number 15.
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Ethnicity of learning disabled children and adults on the LDD in 2005
Mixed Adults North Warwickshire Nuneaton & Bedworth Rugby Stratford Warwick Warwickshire Children North Warwickshire Nuneaton & Bedworth Rugby Stratford Warwick Warwickshire 2 5 1 2 10 7 1 4 1 1
Asian 4 6 11 21 9 2 4 15
Chinese or Other TOTAL Black Black or Ethnic and Minority Black British Group Ethnic Groups 2 4 1 7 2 1 1 4 9 11 1 12 37 0 11 7 1 1 1 0 7 26
Young People with a Learning Disability People become eligible for Adult Social Care services when they reach the age of 18. In 2005, there were 125 people aged between 14-18 on the LDD in Warwickshire. The chart below shows the numbers of young people in transition in each District. Numbers of young people in Transition by District 2005
N. Warks 17 Warwick 32
Stratford 20 Rugby 13
Nun & Bed 43
Numbers rose from 105 in 2001 to 142 in 2003, but have fallen since then. The number of 16 year olds on the LDD has decreased since 2001, while the number of 18 year olds has increased from 16 to 24 in 2005. There are more young people aged 10-19 on the LDD in Warwick District than we would expect from the proportion of the same age group in the general population. There is no obvious reason why this should be the case.
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If all the young people currently on the database remain on the LDD, there could be at least 30 eighteen year olds who may need Adult services in 2007. In a separate exercise, 19 children who currently live outside Warwickshire have been identified as probably needing Adult Services when they return, which may be in the next 3 years. Older People with a Learning Disability in Warwickshire. The LDD Annual Reports show that in 2005 there were 149 people with learning disabilities aged over 60 in Warwickshire: this represents a 26% increase in this age group since 2001. The number of 59 - 64 year olds on the learning disability database in Warwickshire looks set to gradually increase over the next 5 years. People become eligible for services from Older People’s Teams at the age of 65: the numbers reaching the age of 65 in a given year fluctuates; for example, across Warwickshire there may be only 5 in 2008 but 17 in 2009. Dementia There is considerable evidence that adults who have Down' syndrome are at s high risk for developing Alzheimer' disease in later life. It is agreed that s prevalence increases systematically in adults with Down' syndrome who are s over the age of 30. It is estimated that between 10 and 25% of people with Down' syndrome in their 40' have dementia, 50% of those in their 50' and s s s, between 30 and 75% of those over 60. (Mental Health Foundation Briefing No. 17 ' Aging in Adults with Down' Syndrome’). The 2005 LDD Annual s Reports show that there are 51 people with Down' syndrome in their 40’s; 45 s people in their 50’s and 11 in their 60’s. Looking to the future, there are currently 56 people still in their 30’s. The table below shows the numbers who might be expected to be at risk of Alzheimer’s.
Age 40-49 50-59 60+ 40+ Total number people with Down’s on LDD 2005 51 45 11 107 Percentage who may develop Alzheimer’s 10-25% 50% 30-75% Number who may develop Alzheimer’s 5 - 13 23 3–8 31- 44
Currently, there could be between 30 – 40 people with Down’s syndrome in Warwickshire who have, or who may develop, Alzheimer’s. The largest concentration of people with Down’s syndrome aged 40 or more are in the Stratford District (31 people). About one third of people currently live with their families, who may need more support if the person they care for develops dementia.
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Autism There are currently 110 young people (32% of the total number on the Database) and 133 people (12%) aged 18 and over on the Learning Disability Database who have been diagnosed as being on the Autistic Spectrum or who have Aspergers Syndrome or Autistic tendencies. The largest concentration of people with this diagnosis is in Nuneaton and Bedworth (34% of the total). The proportions indicate that, in the future, as young people reach adulthood, there is likely to be an increase in the numbers of adults with Autism. However, it is not yet known how many of these individuals also have a learning disability and this fact presents some dilemmas in planning for services. Behaviours which Challenge Of the people on the Learning Disability Database in 2005, 197 children and young people (58% of the total number on the Database) and 417 adults (37%) identified that one or more of the following categories apply: • • • • Self-Injury Physical confrontation of others Verbal confrontation of others Other behaviour
Supporting Carers The LDD reports show that in 2005, 79 people had a single carer aged 60+ and 131 people had 2 carers aged 60+. This makes a total of 341 people aged 60 or more caring for people with learning disabilities, about a quarter of whom are single carers. The largest concentration of older, single carers is in Rugby.
Future Service Demand
Several factors are likely to contribute to changes in the profile of adults with learning disabilities over the coming years. These include: o The increase in the proportion of younger adults who belong to Pakistani and Bangladeshi communities who, research has reported, have a higher prevalence of learning disabilities. (However the Pakistani and Bangladeshi communities in Warwickshire are small). o The increased rates of survival into adulthood of children with severe and complex disabilities. o The increased life expectancy or decreased mortality rates among people with learning disabilities. According to E. Emerson & C. Hatton (‘Estimating Future Need/Demand for Supports for Adults with Learning Disabilities in England’; Institute for Health Research June 2004), during the decade between 2001 and 2011 there is expected to be: • 7% increase in the total adult population • 17% increase in the adult population aged 60+
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Number of people with serious learning disabilities known to services • 20-59 age group increase by 4% • 60+ age group increase by 20% Using the same detailed methods as Emerson and Hatton, it is estimated that by 2011 there may be 1,903 people with a serious learning disability aged 1664 and 220 over 65 in Warwickshire. However, these figures are based on the calculated prevalence rates of learning disability in 2005, based on the 2005 population estimates. As seen above, the number of people on the LDD does not tally with the expected prevalence rates. As there are fewer people on the LDD than suggested by the prevalence rates, the predicted future numbers may be lower. The chart below shows the predicted rise in numbers over the next 15 years. Predicted number of learning disabled people in Warwickshire aged 16 & over using prevalence in 2005, 2011 and 2021
2,200 2,150 Number 2,100 2,050 2,000 1,950 1,900 2005 2011 Year 2021 1,994 2,123
2,179
An alternative method is to simply apply the percentage rises of 4% for people aged 20-59 and 20% for over 60’s to the number of people known to services on the LDD in 2001. Doing this indicates that, by the year 2011, we can expect the 20-59 age group to grow to 985 and the 60+ age group to grow to 142. Current LDD data however shows that Warwickshire already has 149 learning disabled people over the age of 60. It may be that recording on the LDD has improved since 2001; that the numbers of older people with learning disabilities has risen even faster than expected; or that these predicted estimates of the rise are not valid.
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