Camden Joint Commissioning Plan for Adults with Learning Disabilities

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1 Camden Joint Commissioning Plan for Adults with Learning Disabilities

2 Camden Joint Commissioning Plan For Adults with Learning Disabilities C O N T E N T S Foreword The Camden Vision 1. Introduction and Purpose 2. National and Local Context 3. The Economic Context 4. Understanding Learning Disabilities 5. Joint Strategic Needs Assessment 6. Other Information Sources 7. Resources 8. Current Services CAMDEN S ASPIRATION 9. The Challenge for Camden 10. Personalisation 11. Having a Life 12. Safeguarding 13. Having a Home 14. Having a Life with Good Health 15. Having a Smooth Transition from Childhood to Adulthood 16. Supporting Carers Appendix 1 National Context Appendix 2 Understanding Learning Disabilities References

3 FOREWORD This plan sets out Camden s ambition for people with learning disabilities and their families and carers. Camden has continued to improve outcomes for people with learning disabilities and their family carers in line with Government policy as stated in Valuing People Now 1 and the White Paper Caring for Our Future: Reforming Care and Support 2. It is good to see developments across all Camden s stakeholders Clinical Commissioning Group, Council, voluntary and private sectors putting people with learning disabilities and their families at the centre of developments. Our vision can only be delivered through a partnership approach. This Joint Commissioning Plan for Adults with Learning Disabilities has had the involvement of people with learning disabilities, their families and carers, through Surge and the Planning Together Partnership Board meetings. Planning Together will continue to actively monitor delivery of the plan, ensuring actions are achieved within agreed timelines, according to the implementation plan at Appendix 1. Providing clear and transparent information can enable service users to look at progress and improve services at a local level and it is hoped this Commissioning Plan will drive forward efficiencies whilst improving the lives of individuals. Achieving equality and tackling disadvantage requires continued engagement across the health and social care system and across the community and voluntary sectors. Sustained focus on the three priority areas of health, housing and employment should improve outcomes for people with learning disabilities and their families. We hope for your support as we make this Plan a reality. Camden Council Camden CCG Surge

4 The Camden vision Our vision is to enable adults with learning disabilities in Camden to lead healthy, fulfilling lives. In doing so, services will adopt an enabling role in supporting people to achieve a better quality of life. The focus will be on promoting wellbeing and independence; supporting people to find innovative solutions to meet their needs and enhancing their autonomy, enabling them to achieve their aspirations. 1 INTRODUCTION AND PURPOSE 1.1 Camden s Joint Commissioning Plan for Adults with learning disabilities outlines the framework for the commissioning and delivery of health and social care services to people with learning disabilities and their carers. Our aim is to enable our service users and carers to live healthy, fulfilling lives, as equal citizens of the local community. 1.2 This plan is clustered around the following key outcomes: people have choice and control over their life, and services will work together to ensure people are safe; people have choice regarding how they spend their time during the day, including in the wider community; people have a choice about where and with whom they live; people have appropriate access to healthcare; people with complex needs access high quality, safe specialist health and social care services when required; the transition from child to adult services is smooth, planned and effective; and the family members of people with a learning disability receive timely and appropriate support. 1.3 The NHS Operating Framework 3 sets the priorities for health; the outcome domains are: preventing people from dying prematurely; enhancing quality of life for people with long term conditions; ensuring that people have a positive experience of care; and treating and caring for people in a safe environment and protecting them from avoidable harm. 1.4 The information on local health and social care needs outlined in this commissioning plan identifies the inequalities experienced by people with learning disabilities in Camden, and identifies the priorities for Council and NHS services. This plan will support these outcomes and the aims of the Health and Social Care Act (2012) which place patients at the centre of decision making, as does Liberating the NHS: No Decision About Me Without Me 4

5 2 NATIONAL AND LOCAL CONTEXT 2.1 Legislation and Policy Legislation, Policy Year Focus Caring for Our Future: reforming care and support white paper The focus of care and support will be transformed to promote people s wellbeing and independence instead of waiting for people to reach a crisis point. 2. People s experience of care and support will be transformed with high quality services that respond to what people want. Children and Families Bill 2013 The Children and Families Bill contains a series of measures that are intended to help to address some of the disadvantages faced by the most vulnerable children and young people. One of the main principles is to ensure that services consistently place children and young people at the centre of decision making and support and to ensure that systems and processes enable smoother transition to adulthood. Care Bill 2013 A Bill 6 to reform the law relating to care and support for adults and the law relating to support for carers, to make provision about safeguarding adults from abuse or neglect, to make provision about care standards Valuing People Now The Government's three-year big plan to improve the lives of people with learning disabilities and their families. It covers all aspects of life, including health, housing, getting a paid job, personalisation, transition, advocacy, hate crime and relationships The Government s Mandate 2012 The NHS Commissioning Board s objective is to ensure that CCGs work with local authorities to ensure that vulnerable people, particularly those with learning disabilities and autism, receive safe, appropriate, high quality care. The presumption should always be that services are local and that people remain in their communities; we expect to see a substantial reduction in reliance on inpatient care for these groups of people. Winterbourne View Review, concordat: programme of Action (Further details in Appendix 2) 2012 Department of Health Winterbourne View Review, Concordat: Programme of Action 7, sets out a programme of action to transform services for people with learning disabilities or autism and mental health conditions or behaviours described as challenging. It sets out specific actions to which each organisation has committed to take forward within clear timeframes. Specifically all people with learning disabilities in mental health assessment and treatment units need to have moved out of hospital by June 2014, or for there to be clear and stated rationales for remaining in hospital. 2.2 Local Context This Learning Disabilities Commissioning Plan incorporates the objectives set out in the Camden Plan which commits to making the borough: a place where everyone has a chance to succeed and where nobody gets left behind The Camden Plan s stated ambition is to make a significant difference to the levels of inequality in Camden through creative and innovative solutions.

6 The Camden Plan sets out the strategic aims that are shaped and informed by local residents together with our assessment of the current and expected need. Where specialist support services are required, this plan describes our priorities for development and investment over the next three years, both across statutory services and in partnership with voluntary and independent sector organisations Engaging with our partners and stakeholders is a priority for Camden. We will continue with a robust programme of engagement and involvement of our service users, carers and professional stakeholders, to inform our continuous improvement and service developments. The strategy will be underpinned by a robust delivery plan which will be subject to review in line with changing national and local policy. The table below illustrates the core objectives of the Camden plan Objective Examples To provide democratic and strategic leadership Ensure that the health and care needs of people fit for changing times with learning disabilities are addressed through the Health and Wellbeing Board To develop new solutions with partners to reduce inequality To creating conditions for and harnessing the benefits of economic growth To invest in our communities to ensure sustainable neighbourhoods To deliver value for money services by getting it right first time Ensure that people with learning disabilities can access housing that meets their needs, access personalised support and that providers address health inequality Improve employment opportunities for people with learning disabilities, ensure that the training and support provided supports people into work Ensure services in the community are available to all. Support people to feel safer, services that recognise and help to manage risk and safeguarding concerns Ensure that services supporting people with learning disabilities are streamlined, reduce duplication and have the biggest impact for the resources available Source: Camden Plan ECONOMIC CONTEXT 3.1 Health and social care has seen major reform since 2009 and the current economic climate strongly indicates that this will continue at pace over the next 3 years. The Welfare Reform Act and the announcement of the next Comprehensive Spending Review (CSR) may signal further pressures. In this challenging economic context, Camden will deliver major transformation and efficiency programmes to support the redesign of commissioning and operational service delivery in a personalised way. 3.2 The introduction of personalisation has set the platform that gives individuals the opportunity to have greater choice and control over the care and support they wish to receive. Changes to the way the NHS commissions health services against tight efficiency programmes combined with the probable introduction of personal health budgets, will place greater emphasis on the need for mainstream and universal services.

7 3.3 The overall budget for the London Borough of Camden and NHS Camden on commissioned services for residents with learning disabilities during 2012/2013 was approximately million. The strategic aims of Camden will need to be delivered within existing and reduced resources; with the focus on reshaping and reconfiguring existing services to deliver the planned improvements that can meet the needs of people with learning disabilities. 3.4 In preparing for change there will be significant implications for everyone involved in the commissioning, procurement, provision and monitoring of services for people with learning disabilities during the timeframe of this Strategy and the local situation will be kept under regular review by the local Learning Disabilities Planning Together Partnership Board. Through an extensive engagement programme we have captured and incorporated the feedback received both in terms of commissioning and operational service delivery to inform the service redesign programme. 3.5 For some people change will be difficult, and increasing pressures on resources will mean that not everyone will get exactly what they want. Budget pressures mean that the majority of service improvements in this strategy will have to come from both efficiency savings and possibly de-commissioning some existing services as well as from re-commissioning ever more creative and cost effective services. However, by continuing to work closely with people using services and all our partners, this Strategy will provide a foundation for continuous improvement in learning disabilities services and better lives for the people who use them. 4 UNDERSTANDING LEARNING DISABILITIES 4.1 Learning disability is defined as including the presence of: a significantly reduced ability to understand new or complex information, and to learn new skills (impaired intelligence): with a reduced ability to cope independently (impaired social or adaptive functioning; and childhood onset of such difficulties which are life long. This definition is based on the International Classification of Diseases- 10 th Edition (ICD-10, World Health Organisation) and the Diagnostic and Statistical Manual, 4 th Edition (DSM-IV, American Psychiatric Association) as accepted internationally as the diagnostic criteria for learning disabilities. All three criteria must be met for the diagnosis to be made. Whilst this generally accepted definition can be used to describe this population group, there is considerable diversity in terms of ability and support needs among this group of people. Some may be able to live relatively independently with only minimal amounts of support, whereas others may require high levels of specialist support 24 hours a day in order to survive. (See Appendix 2) 5 JOINT STRATEGIC NEEDS ASSESSMENT (JSNA) As of September 2013 there are 662 adults who are known to Camden s learning disabilities service and 477 adults registered with a learning disability in Camden General Practice The age profile of people with learning disabilities in Camden is young with just over a quarter of the population aged between years old. The prevalence of learning disabilities is higher in men compared to women. This gender difference is most marked in the age groups Prevalence of learning disabilities differs with levels of deprivation. The prevalence of learning disabilities amongst Camden s registered population is 3 times higher in more deprived areas compared to the least deprived area.

8 5.3 People with learning difficulties are at significantly higher risk of early, preventable death than other groups. Some of the reasons relate to higher levels of deprivation and social exclusion, and some lifestyle factors, such as being overweight or obese. However, poorer access to and responsiveness of health services also plays an important part. Therefore continuing action to improve health and access to health services for people with learning disabilities is an important priority in Camden. 5.4 Each year GPs are encouraged to offer regular health checks to make sure important health problems are identified and treated via a (national) Directed Enhanced Scheme in Primary Care. In 2011/12 66% of people with learning disabilities in Camden had a health check. This is higher than the average for London (52%) and England (53%) 6. OTHER INFORMATION SOURCES 6.1 Learning Disabilities and Health Inequalities Apart from the Joint Strategic Needs Assessment, several well documented studies have informed our understanding of Health Inequalities and people with learning disabilities in the UK 11, 12, 13 The Health Equalities Framework 14 (HEF) identifies five key determinants of health inequalities experienced by people with learning disabilities: 1. Greater risk of exposure to social determinants of poorer health such as poverty, poor housing, unemployment and social disconnectedness. 2. Increased risk of health problems associated with specific genetic, biological and environmental causes of learning disabilities. 3. Communication difficulties and reduced health literacy. 4. Personal health risks and behaviors such as poor diet and lack of exercise. 5. Deficiencies relating to access to healthcare provision. Camden Learning Disabilities Service is piloting the use of the Health Equalities Framework as a tool to potentially measure outcomes of the service, to aid in service planning for individual customers and in population level planning / service development. The aim of the pilot is to see if the HEF provides data useful in reporting outcomes and in helping the service to understand where better to aim resources at an individual and population level. If the pilot produces useful data, the intention is to roll out the use of the HEF to all CLDS clinical and social care work The HEF provides a practical framework by which to understand the contributions of multidisciplinary teams and the impact of their work on mental, physical and behavioural health. It may also provide a useful guide to those areas of work which services need to further develop in order to best meet the health needs of people with learning disabilities, at both an individual and a population level. 6.2 Data on People with Learning Disabilities Known to Camden Services Research studies across the world have looked at how many people have a learning disability. Together researchers estimate that 1.1% of the general population have a learning disability; 11 people in every What this means for Camden s population of 225,140 is that there could be as many as 2,480 children and adults with a learning disability. Yet a learning disability diagnosis is recorded for only 544 people (477 adults and 67 children) registered with a GP in Camden; 662 adults and 305 children (967 people) are known to the health and social care services that Council runs for people with learning disabilities. Much as not everyone with a learning disability needs special health and social care support, however a lot more needs to be done to make sure that Primary Care works

9 with service users and carers to bridge the discrepancy between what the large research studies suggest and what is recorded on GP registers. An analysis of those known to the learning disabilities service indicates that they can be split into the following categories of need: TYPE OF NEED People with LD and Mental illness People with LD and Epilepsy People with LD and Challenging or complex behaviour Profound Multiple Learning Disabilities Facts and figures 211 people: 24 severe, 75 moderate, 112 mild problems 116 people: 25 Severe, 36 Moderate, 55 Mild 256 people: 52 severe, 103 moderate, 101 mild. Specialist provision includes: Inpatient care in a designated ward (Camden has 2 specialist beds at St Pancras hospital) Community based assessment and treatment. This is a significant issue as the professionals involved may not have the skills to work with people with behaviours that challenge. This in itself can create barriers to accessing assessment and treatment. People who present with behaviours that challenge are some of the most demanding for specialist health and social care 48 people: The level of disability is such that the person will require significant levels of support simply to survive - the person may have very few, if any, independent living skills. Issues for people with PMLD include: Lower levels of IQ coupled with sensory loss and/or physical impairment Greater difficulties communicating More complex health needs, and/or mental health difficulties Greater risk of failed or mis-diagnosis of physical health difficulties as the person may communicate via behaviour rather than words. Risk of diagnostic over-shadowing, ie difficulties being seen as related to the learning disability when in reality they have a physical cause People with Complex Physical Health problems People who have complex health care needs, sometimes associated with specific and rare chromosomal disorders People whose learning disabilities and / or other associated features (eg autism spectrum disorder,, attention hyperactivity disorder. Complexity may relate to the use of behaviours that challenge (eg. Self injurious behaviour,

10 aggression) as a form of communication n the absence of full verbal communication skills. May require specialist support and understanding when they have significant health needs and / or require acute admission for physical health problems The identification and management of conditions such as dysphagia and their requirement for speech and language therapy. People with Severe Learning Disabilities 50 people. Each year for the next 3-5 years, of the 20 young people in transition from child to adult services, about 6-8 are likely to be with PMLD or severe LD People with Autism Spectrum Conditions. (ASD) 121 people: 40 severe, 44 moderate, 28 mild ASDs affect how a person communicates with, and relates to, people and the world around them. Difficulties are experienced in three specific areas: social interaction, social communication and social imagination. *407 Camden patients are assigned an autism code and registered with a Camden GP. **The above information depicted in the pie chart below, describes the dynamic nature of people s needs. (Source: Community Learning Disabilities Service, an integrated health and social care service, providing specialist expertise in the support and care of this whole population group)

11 Recorded Range of Conditions Affecting People with Learning Disabilities 6% 15% 26% 6% 15% 32% LD and Mental Health LD and Challenging Complex Behaviour Severe LD LD and Epilepsy Profound Multiple LDs Austistic Spectrum Conditions Of the 662 people with learning disabilities known to Camden s services 425 are receiving adult social care services (e.g. in supported living projects or other forms of paid for direct support) and 206 are receiving direct specialist healthcare/multi-disciplinary team input (i.e. clinical assessment and treatment) Service users move in and out of requiring and receiving different services over time, with all 662 people being eligible to receive specialist services at some point. Many people have overlapping needs e.g. autism spectrum disorder, severe learning disabilities and behaviours that challenge. People with multiple overlapping needs often have the most complex service needs and may present the highest risk to themselves and others. Almost by definition, the people in overlap areas are likely to have very complicated needs. These people often require specialist staff from multiple disciplines to coordinate their work to meet those needs 6.3 Learning Disabilities Self Assessment Framework The Department of Health published The Operating Framework for NHS in England 2012/13. This included a planning checklist with a number of requirements where assurance will be sought to ensure that local plans are in place. The intention is to create an NHS that is much more responsive to patients, and achieves better outcomes, with increased autonomy and clear accountability at every level. Through the process of completing the Learning Disabilities Self Assessment and Performance Framework, Camden can assure itself that the White Paper s key objectives below are adjusted for people with learning disabilities and their family carers: Strengthening public and patient involvement Improving integrated working Local authority leadership for health improvement

12 The outcome of the 2011/12 LD self-assessment exercise highlighted areas for improvement in the co-ordination and delivery of primary care services in Camden. It noted the need for reduced reliance on out of area placements for people with learning disabilities with complex health needs, particularly in relation to mental health and complex and challenging behaviour. 7. RESOURCES 7.1 Adult Social Care expenditure for 2013/14 is m. This expenditure has reduced significantly from a high in 2011/12 of m, which reflects funding cuts from central government. We have managed to make these funding reductions by focusing our support on the most vulnerable residents and through implementing efficiency savings within the adult social care workforce and individual contracts. We are anticipating further significant funding cuts from central government that are likely to require the Council to make savings of at least the same magnitude in the next five years. This stark picture is mirrored across the NHS. 7.2 Camden CCG is significantly exposed to changes in the health allocation formula with a projected reduction of about 75m over the planning horizon (pace of change yet to be determined). In addition, predicted savings of between 23m- 41m are required by 2017/18. The Government spending round health settlement earmarked 3.8bn of health funding to be transferred to Social Services of which Camden share is about 18m. A significant proportion of this funding is already within Camden Council and Camden CCG joint commissioning arrangements. In effect, considering the significant financial challenge, both the Camden Council and Camden CCG will have to work together to deliver for the population of Camden. 7.3 Camden spends million on services specifically supporting people with learning disabilities. 4.05million of this is health funding with the remainder, local authority funded social care support. It is important to note, however, that usage of universal services e.g. NHS A&E, and mainstream health services has significant resource implications, in terms of staffing and finance, but data is not routinely recorded to support accurate modelling of this service usage.

13 Learning Disabilities Outturn Residential 6.13m Supported Housing 5.46m Client contributions 0.59m Accommodation 11.67m TOTAL Learning Disabilities 22.24m Adults Social Care 18.19m Specialist Health 4.05m Respite 0.46m Day Opps 2.89m LD Continuing. Care 2.70m Other 1.91m CLDS Clinical 1.35m Day Opps (in-house) 1.19m Day care (external) 1.44m Nursing 0.08m Care purchasing (external) 13.52m Other (ext*) 1.86m Community care 1.08m Education / Training 0.03m Direct Payments 0.81m Transport 0.27m * external day care accounted for in Day Opps bubble There is a work programme addressing the levels of investment, efficiency and effectiveness of Camden services. 8. CURRENT SERVICES 8.1 Camden Learning Disabilities Service Camden Council hosts the Camden Learning Disabilities Services (CLDS) an integrated health and social care service for people with learning disabilities. This service brings together professional staff as follows:

14 Organisation Service Offer Camden Adult Social Care Social workers Specialist support workers Accessible information worker Access to health worker Camden & Islington NHS Foundation Psychiatrists Trust (C&IFT) Clinical psychologists Counsellor Occupational therapists Nurses Whittington Health Speech and language therapists Central and North West London Trust Physiotherapists 8.2 The service provides an integrated approach to assessment, care management, care coordination, therapeutic intervention and health professional training and support for people with learning disabilities. The service delivers person centred services, within both hospital and community settings and respects and promotes the rights of people with learning disabilities as full citizens. CLDS works across the full range of support systems used by people with learning disabilities, including: i. Working collaboratively with the natural supports available to it s customers, ie families, friends and local communities; ii. Commissioning supported living projects where customers maintain their own tenancies and receive support tailored to meet their individual level of need. CLDS works collaboratively with the support providers to ensure needs are best met; iii. Commissioning, working with and overseeing specialist healthcare placements, either provided directly through local NHS Trusts or out-of-borough specialist placements usually funded via Continuing Healthcare where the customer has a primary healthcare need; iv. Commissioning and overseeing highly specialist, national or regional services such as secure forensic services or the National Deaf Service for customers with highly specialist but rare needs. 8.3 Mainstream Health Services Primary Care Eighty per cent of all contacts for healthcare are undertaken in general practice and 90% of care is undertaken in the community. Fifty per cent of all GP appointments are for patients with long term conditions (LTCs), and the number of people with multiple LTCs is predicted to rise. The average consultation requirement at general practice is 10 minutes per patient. Empirical research has shown that people with LTCs on average spend between 20 and 30 minutes with their GP. Because of communication challenges, people with learning disabilities require significantly more time than that for an appointment. The poorest social classes have a 60% greater LTC prevalence compared to the richest groups and have 30% more severe disease Nationally, the recording of people with learning disabilities is low, and this has an impact on low access to the most appropriate services. A learning disability diagnosis was recorded for 544 people registered with a GP in Camden in 2011/12, of which 477 were adults (aged 18+) according to the Camden GP dataset 2012

15 This number differs from the number recorded for Social Services and on Quality Outcomes Framework (QOF) registers because of the method of data extraction and coding from the two different sources; Public Health GP and QOF datasets. Total numbers of people with a learning disability registered with GPs ranges from 54 to less than 5 per across different Camden GP practices. The crude, diagnosed prevalence varies by practice, with four practices having significantly higher prevalence compared to the Camden average, not accounting for differences in population characteristics (e.g. age, ethnicity, deprivation) between practices. (Source: Joint Strategic Needs Assessment) Mental Health Services People with learning disabilities can experience the full range of mental health problems; however, it can be difficult to identify the prevalence of depression and anxiety among people with learning disabilities. Many people with learning disabilities are not able to express their feelings easily in words, which can mask the clinical presentation of a mental health problem and cause difficulty in making an accurate diagnosis. The IAPT Service is provided by Camden and Islington Foundation Trust we want to ensure that people with learning disabilities some of whom may have complex needs such as behavioural problems and inability to express themselves using words, access this service particularly as they are currently underrepresented. IAPT services need to be flexible in recognising and responding appropriately to these needs Availability of advocacy services For people with learning disabilities to be treated as equal citizens in society and have real choices and control over their lives, we recognise that it is essential that individuals have appropriate support to access information and to express their views within the limitations of their abilities, and to express their views whatever their limitations. Advocacy Services help people to secure their rights and have their say and are commissioned from local voluntary sector organisations. There are local initiatives between advocacy groups and the police and community safety officers to tackle disability hate crime and ensure that people feel safe in their local neighbourhoods Dental and Optometry Services There is anecdotal evidence that these are not well accessed by people with learning disabilities. CAMDEN S ASPIRATION 9. THE CHALLENGE FOR CAMDEN 9.1 How to encourage increased independence without compromising safety 9.2 How to improve engagement with people who have the most complex needs 9.3 How to improve access to services by increasing availability of information in Easy Read 9.4 How to encourage people with learning disabilities to become involved in developing their health action plans 9.5 How to improve take up of health checks for people with learning disabilities

16 9.6 How to identify and make reasonable adjustments to generic services to ease access for people with learning disabilities (Equalities Act 2010) The following themes describe the key priorities for people with learning disabilities in Camden, their families and carers. 1. Personalisation 2. Having a life 3. Safeguarding 4. Having a home 5. Having a life with good health 6. Health for people with complex needs 7. Having a smooth transition from childhood to adulthood 8. Supporting Carers Each section outlines the objective, where we are at now, where we want to be. Our commissioning intentions and outcomes expected are in the Appendix Personalisation Commissioning objective: People with learning disabilities will have more choice and control over their lives 10.1 The principle of personalisation is firmly established at the core of Camden s commissioning activity. The Borough is committed to ensuring that all those eligible for support from the local authority will be in future supported to self assess and be made aware of the funds allocated to them to meet their support needs. We feel that for people with learning disabilities this is particularly significant as one of the most marginalised groups in society today it is of huge importance that people with learning disabilities have a right to choose how they are supported to live their lives and that there are choices available locally. Where are we now? As of March 2013, 288 of people with learning disabilities eligible for support from the adult social care department had a personal budget. 84% of all LD clients received their services as a personal budget 75 (24.6%) of eligible users had access to a direct payment. Independent support services provided by Disability in Camden (DISC) offer advice and support to 75 direct payment service users with learning disabilities so that they can use their Direct Payment to meet the social care needs identified in their support plan. The council remains committed to Personalisation being used to give individuals the opportunity to live as any other citizen with or without a disability in their local community..

17 Where do we want to be? People will have access to the advice and information they need to make decisions about their health and wellbeing and will be able to use their strengths and preferences to find their own solutions.. Camden will support people to regain and maintain good health and independence, reducing the need for ongoing formal services and enabling people to live in their own homes. The assessment for understanding support needs will be personcentred, and: be customer led; be clear about whether a customer is eligible for support and why; be sufficient to meet needs and deliver outcomes; promote choice and control, including telling people how much money they have in their personal budget and what their contribution will be Camden support plans will promote independence, enable people to draw on their own aspirations, resources and networks and put the customer in control of delivering outcomes Camden will provide a range of options to ensure that people find it easy to stay in control of their support and to manage their personal budget appropriately Camden will ensure there is a wide and diverse range of personalised support options available that fit around people s lives and are easily accessible.. Camden works in partnership with health and other agencies to develop the best support with customers.. Camden facilitates and values the contributions of people, providers and communities. 11. Having a life Commissioning objective: People with learning disabilities will have choice and control regarding how they spend their time during the day, evening and weekends 11.1 People with learning disabilities are often not connected within their communities, particularly people with complex needs. Our partner organisations have a wealth of knowledge and experience in identifying and tackling the barriers that people with learning disabilities face when accessing mainstream services. We will continue to work together to make additional

18 recommendations and improvements so that local social, leisure and community activities become accessible to all. More people should be actively involved in the local community Many of the barriers [to accessing mainstream services] are already very well understood by people working on the ground in the sector Carer feedback from Consultation Partner provider organisation feedback from Consultation Where are we now? Employment -. In Camden people with Learning Disabilities are rarely if ever employed, which needs to change so people have paid and meaningful work. The choice to volunteer should be regarded as a meaningful lifestyle choice rather than a form of work Day opportunities are provided which support: Work based training for employment. A range of opportunities in different settings which provide a choice of daytime activities and which also enable people to develop and maintain friendships.. Education and Training As part of the tendering process for further education provision, Camden Council has stipulated a requirement for meaningful learning opportunities for people with learning disabilities which focus on paid employment as a goal. -. Inclusive and Active 2 is the sport and physical activity strategy for disabled people in London, the outcomes that will result in disabled people being able to access sport and physical activity opportunities. Camden is signed up to the strategy and has registered an implementation plan.. Where do we want to be?

19 With more employment and volunteering opportunities for people with learning disabilities. Where people with LD are welcomed and included in their local community and are able to access day opportunities. Where there is specialist building-based services (for those who need them) focused on supporting choice of activities Where increased numbers of people with LD have person centred support plans, use direct payments and exercise choices in what they do during the day, evening and weekends. Where more information is provided in Easy Read format. where there is easy access through the Click start website Where people with LD engage in sport and physical activity through the Inclusive and Active 2 action plan. 12. Safeguarding Commissioning objective: Camden prevents abuse whenever possible and responds appropriately and quickly to any abuse of people with learning disabilities to minimise its impact Safeguarding people at risk of abuse is a priority in Camden, and reflects the national and regional agenda. Abuse can take many forms, physical, financial, emotional and psychological, sexual, institutional, discriminatory and neglect. The laws guiding safeguarding are currently under review as part of the adult social care reforms. The Safeguarding Adult Partnership Board includes representatives from across the borough, including adult social care, health, the police, voluntary and community providers, the fire brigade and probation service. Service users are also represented Where are we now?

20 The Safeguarding Adults Partnership Board (SAPB) includes representatives from the Council, police, CCG, mental health, local hospitals, ambulance service, voluntary and community providers, fire brigade and probation service. Camden receives increasing alerts and referrals for abuse each year, suggesting the work to raise awareness is effective. In 2012/13 Camden SAPB received 715 alerts and referrals for abuse. 10% of the referrals we received related to concerns about the abuse of people with learning disabilities. Camden SAPB supported SURGe to produce and distribute a DVD explaining what abuse is, the different forms it can come in, and what to do if you are concerned someone is being abused.. Planning Together (Camden s learning disabilities Partnership Board) has established a Keep Safe sub-group to look at three priorities: 1. That people with learning disabilities receive high quality, safe services and feel safe and happy with the services they receive 2. That local adult safeguarding arrangements are working well for people with learning disabilities 3. That community safety initiatives continue to include people with learning disabilities. The Council works with local Crime and Disorder Reduction Partnerships to identify and tackle hate crime issues in the community and ensure service users with learnign disabilties are supported to live as equal and valued citizens

21 Where do we want to be? 13. Having a home Commissioning objective: People with learning disabilities will have a choice about where and with whom they want to live Where are we now? 13.1 The Accommodation profile of people with learning disabilities as at January 2013

22 Over half of adults continue to live with their families, many into middle age and even older. 130 people (20%) live out of borough. 86 people are in registered care and a further 6 live in healthcare facilities and 3 in forensic settings.. Of those living in Camden over 40% live with family or friends in settled longterm accommodation. Of these, 25% are living with older family carers (aged 65+). 32 supported housing schemes providing accommodation for 109 people. 16 are self contained one bed flats and 16 are shared accommodation. Accommodation of People with Learning Disabilities in Camden Settled mainstream housing: Family/Friends (including. flat share) 235 Council tenant 119 Supported accommodation./lodgings/group Home 112 Registered care home 91 Housing Association tenant (including RSL) 29 Private tenant 14 Sheltered or Extra Care Sheltered Housing/Other sheltered 12 Temporary Accommodation 12 Acute/Long stay healthcare facility 10 Adult Placement scheme 8 Others Health Profile of people with LD who have Accommodation Needs Series Behaviour Epilepsy Autism Health Needs Sensory The key principle is that People should be able to live in the place or home that they choose to, with the support that they require to live there. Support is based around their needs and is

23 not attached to the accommodation they live in, so that if their needs change they do not have to move The Camden Housing Strategy The Camden Housing Strategy sets out the Council s commitment to providing or commissioning the specialist accommodation or support to sustain housing that is needed by some groups with particular characteristics or needs Specialist support to help people stay in their homes: Services include: The Council is committed to increasing the range of housing options for people with learning disabilities and better meeting the needs of those who also have physical disabilities. Therefore, it is currently identifying adults with learning disabilities, including those in residential care (often outside the borough), who could be supported to move to alternative accommodation and those living in shared accommodation may wish to live more independently. Some supported living schemes that are suitable for redevelopment to provide more flexible, better quality accommodation have been identified. Plans are now being prepared, in partnership with housing association providers, for the redevelopment of two schemes, one to create three en suite units for those with complex needs from a scheme previously used for those with physical disabilities and a second to create five one bedroom flats from a scheme that currently provides six bedrooms with shared facilities Specialist Accommodation and Support The Council provides or commissions specialist accommodation for those not able to live entirely independently, preferring supported accommodation over more institutional and expensive residential care where viable. Specialist accommodation for Camden residents comprises over 554 residential care or nursing home places; 340 units of supported accommodation for people with learning disabilities and mental health needs; 323 for young people, and 830 for single homeless people with support needs. (20) 13.5 The Move On Project This project is responsible for planning and co-ordinating accommodation moves for vulnerable people, focussing on more effective and efficient use of resources. This helps move service users to more independent forms of living and sees more people supported in the community, and will also help achieve cost savings. Profiling provides a detailed picture of future need. Housing needs profiles are completed for people with learning disabilities, young people in transition, people with acquired brain injury, physical disabilities, older people and people with mental health. The Warden Road scheme is a purpose-built supported living facility for people with profound and multiple learning disabilities (PMLD). Three people were moved from residential settings outside the borough into Warden Road, on a model of co-production which maximises family input. It uses Individual Service Funds (ISF) to give people personalisation, moving people closer to families and accessing local services, including health services. Assistive technology is used to promote independence and where possible reduce the level of care and support. One service user, with severe challenging behaviours moved to a decommissioned sheltered accommodation 2-bed flat, for which their weekly care package reduced by nearly 1000 per week as the result of a waking night service being replaced by a sleep-in service with the use of assistive technology. The challenging behaviours lessened significantly resulting in less time-intensive safeguarding work. This successful model is to be replicated for the Winterbourne concordat cohort of people with high needs and challenging behaviours Where do we want to be?

24 Where people with LD are able to access a similar range of accommodation options as the general population Where a suitable mix of accommodation is available to meet the range of needs including co-morbidities (physical and mental health needs). Where people are supported to live in or move to accommodation which maximises their independence. Where people are supported to live in the Camden community rather than in residential or institutional care. Where more information is provided in Easy Read format, for example an Easy Read tenancy agreement. 14 Having a life with good health Commissioning objective: People with learning disabilities will have improved health outcomes and appropriate access to healthcare Where are we now? 14.1 Primary care In line with the national picture, in Camden there is a significantly higher prevalence of epilepsy, asthma and diabetes in the population of people with learning disabilities.

25 Indirectly age-standardised ratio of long term conditions in people with learning disabilities compared with Camden's registered population, aged 18 and over, September ,000 2,500 2,000 1,500 1, Epilepsy Serious mental illness Diabetes CKD Chronic depression COPD Chronic liver disease Heart disease Hypertension *CHD, atrial fibrillation and heart failure *CKD = Chronic Kidney disease Source: Camden's GP Public Health dataset, 2012 Camden average

26 The national Directed Enhanced Service (DES) in primary care for patients with learning disabilities was informed by the need to improve access and promote a model of proactive care, with the potential for early diagnosis and management of treatable health problems. In 2011/12 just 66% of people with learning disabilities in Camden had an annual health check. Whilst this is higher than the average for London and England (see table below) in Camden we want to see a further increase. We want to see consistent linkage to individual Health Action Plans (HAPs) which are intended to record the outcome of the health check and enable the person to manage and maintain their health. Percentage of people with LD Who Receive Annual Health Checks Camden London England 2008/09 40 % 20% 23% 2009/10 55% 37% 41% 2010/11 59% 46% 49% 2011/12 66% 52% 53% Source: Learning disabilities profile, 2012, Learning Disabilities Observatory Secondary Health Care Local research indicates use of hospital accident and emergency by people with learning disabilities is higher than for the general population in Camden,27% of local people with learning disabilities were admitted to hospital between January 2007 and December This figure is in keeping with the findings of the national patient safety agency research in 2004 which found nationally that 26% of people with learning disabilities are admitted to hospital each year, compared with 14% of the general population The requirements placed on hospitals, and acute commissioners are set out in Monitors Compliance Framework 20. There are six criteria considered for meeting the needs of people with a learning disability, based on recommendations set out in Healthcare for All (DH 2008). NHS foundation trust boards are required to certify that their trusts meet requirements above at the annual plan stage and in each quarter. Failure to do so affects the results in the application of the service performance score for this indicator. Camden Clinical Commissioning Group is committed to monitoring local hospitals to ensure their performance is within agreed contracted targets for improving the experience of people with learning disabilities Community Health Services Community health services help people to remain healthy and prevent avoidable deteriorations in their health conditions. Services are aimed at people who have specific conditions and who require help in managing those conditions including: Diabetes: The Camden Community Diabetes Service, in partnership with a patient s General Practitioner (GP), identifies Camden residents with a diagnosis of Diabetes requiring additional input, and support them to become more effective in selfmanaging their diabetes. Camden LD Plan February 2014/26

27 Heart Failure: The Community Heart Failure Service focuses on providing a comprehensive assessment and individualised care plan to patients with a diagnosis of Heart Failure. Chronic Obstructive Pulmonary Disease: The Community Respiratory Service aims to provide a seamless specialist service to patients with complex chronic respiratory disease, using a number of robust pathways and to support other healthcare professionals in the management of respiratory disease. Neuro: The Camden Neuro and Stroke Service (CNSS) provides support, rehabilitation and early supported discharge for patients with a neurological diagnosis who have a need for specialist neuro-rehabilitation. The service supports individuals to access transitional exercise programme for people unable to directly access mainstream leisure facilities (TARGET) and Physiotherapy support for the Camden Learning Disabilities Services. Where do we want to be? Where primary and secondary health services undertake reasonable adjustments to improve access by people with LD. Where more time is scheduled for GP and hospital appointments in view of the likely communication difficulties with this client group. Where there is a well designed patient data system that will improve data collection and dissemination across health and social care Where GP Practices effectively and efficiently identify and register people with LD, increase the uptake of annual health checks, and support the development of Health Action Plans.. Improved access to community NHS services for chronic conditions including epilepsy, diabetes, coronary heart disease, falls prevention. This will reduce inappropriate unscheduled inpatient care activity. Where there is well planned LD awareness training including Mental Capacity Training for front line staff in primary care, hospitals, dentists, opticians.. Having a Life with Complex Needs Commissioning objectives: Individuals with complex needs will access high quality, safe and specialist health and social care services when required Where are we now? 14.5 As part of developing suitable local care pathways to support people with the most complex needs to live in Camden, commissioners and senior managers in the learning Camden LD Plan February 2014/27

28 disabilities service have been working together to understand current demands and likely future requirements. Emerging from this work is an improved understanding of local needs but also clinical advice and involvement in designing the pathway and an appropriate model of care from the outset. Where do we want to be? With clinicians supporting individuals with complex needs undertake specialist health assessment and short-term individual clinical interventions Where there is effective support with communication to enable people to let health and social care professionals know what they need.. Where people can maintain personal independence and experience community inclusion. Where the circumstances that that give rise to inappropriate hospital admissions are effectively addressed. 15 Having a smooth transition from childhood to adulthood Commissioning objectives: The transition from child to adult services is smooth, planned and effective for all people with a learning disability 15.1 Camden aims to assist young people succeed in education and their careers; live as independently and healthily as they are able to and be active members of their communities. Camden aims to offer a seamless and effective transition from children s services to adult services Becoming an adult is an important time in a young person s life; as independence increases young people begin to make choices about the next steps in their lives. They may face changes in their social network and family life and make decisions about their housing and living arrangements. This should be an exciting experience, but often it is also a time of uncertainty for young people, their parents, carers and families For young people who have a lot of contact with agencies, services or support, this time can be more difficult as they make the move between children s and adults service provision. When young people leave one service and enter into another, they may be faced with new assessment criteria, leading to a different amount of support with assessed needs being met in alternative ways. We know from discussions with young people and their parents, carers and families that this can be a very difficult and daunting experience Camden LD Plan February 2014/28

29 15.4 Camden s Transition Framework sets the strategic aims and plan for the provision of services to disabled young people between the ages of 14 and 25 with multiple and complex needs, as they move from teenage years to adult life. It sets out Camden s transition policy and aims, as well as the role of key agencies in providing services to young people and their parents or carers. It also sets out how those agencies will work together to ensure that young people and their parents or carers experience a continuity in support to facilitate the planning of services from childhood to adulthood, and to ensure an equality of opportunity in education, employment, training, housing, health, transport, leisure and community inclusion. Where are we now? Personal budgets help young people be more independent and to have greater choice and control. Young people and their full range of needs are at the centre of planning There should be more post-16 education options, and work place mentoring in schools Data systems across Health, Education and Social Care need further development Professionals and communicators require further training to make reasonable adjustments for people with Learning Disabilities. There are 500 young disabled people 0 to 18 years of which 250 are known to Social Care Team who are in receipt of short breaks services and support services ; Over the next 5 years approximately 20 young disabled people per year will become eligible for adult learning disabilities services; and Approximately 30% of these people have severe learning disabilities and/or multiple health conditions.- Age at start of 11/12 academic year 1a. Up to and including 13 LEARNING DIFFICULTY AS PRIMARY NEED MLD SpLD SLD PMLD TOTAL b. Total upto Categories relate to SEN descriptors: MLD Moderate Learning Difficulties / Disability Camden LD Plan February 2014/29

30 SpLD Specific Learning Difficulties / Disability SLD Severe Learning Difficulties / Disability PMLD Profound and multiple Learning Difficulties / Disability Camden LD Plan February 2014/30

31 Where do we want to be? Where there are improvements in the way young people and their parents and carers experience the transition into adulthood. Where there is improved co-ordination between Education, Health and Social Care provision and a single assessment process.. Where there is effective and timely support to young people to remain in further education until the age of 25. Where there is increased choice and control for young people in transition over opportunities, services and support available to them, including the use of individualised budgets and direct payments.. Where there is support to enable young people to get and keep jobs. 16 Supporting Carers Commissioning objective: Carers will be recognised and valued as fundamental to strong families and stable communities 16.1 In the 2011 Census there were approximately 17,000 adult carers In Camden. (ONS 2011). Carers provide unpaid care and support to adults or children who are frail or have physical or learning disabilities, mental ill health or alcohol or drug dependency. The health and social care support that carers in Camden provide is estimated to be equivalent to 316 million a year Providing care can have a substantial impact on a carer s current and future quality of life. There is recognition that carers as a group are at disproportionate risk of experiencing health inequalities A solid evidence base now exists on the health issues that may be associated with caring, including mental and physical health problems and increased mortality especially in more elderly carers. The clear relationship between poor health and caring becomes more apparent with the duration and intensity of the caring role. Those providing high levels of care are twice as likely to have poor health compared with those without caring responsibilities. (ONS 2001) The Camden and Islington Strategy for Young Carers Its stated vision: Carers will be universally recognised and valued as being fundamental to strong families and stable communities. Support will be tailored to meet individuals needs, enabling carers to maintain a balance between their caring responsibilities and a life outside caring, while enabling the person they support to be a full and equal person Camden LD Plan February 2014/31

32 Where are we now? Support for carers is provided through generic carer support services. The specific service for LD has 176 family members involved with serivces, 29% are aged over % of the people with LD live at home. Short breaks for children and young people up to the age of 18, inlcuding weekend and holiday activities and a transition/independent living service are commissioned by Children, Schools and Families. Older carers supported at the Carers' Centre with health events, stress management, healthy activities, health checks, Dementia workshops. Monthly social group for older carers of LD at Centre 404. Carers are assessed and offered support to continue their caring role. Carers payments are made fairly using a resource allocation tool. A Carers' Support Worker keeps carers informed about the range of services and opportunities available to them and provides advice and advocacy Voluntary sector support for carers provided thorugh the Carers' Centre. Camden LD Plan February 2014/32

33 Where do we want to be - (Camden Carer Strategy priorities ) Where Camden is able to identify and recognise carers. Where Camden builds the confidence of carers in local support services so families can enjoy more natural relationships rather than feel 'burdened' by caring responsibilities. Where Camden is able to realise and release the potential of carers. Where Camden is able to give carers a choice and enable them to have a life outside caring. Where Carers will be supported to remain mentally and physically well including the promotion of breaks from caring. Where Camden s young cares are able to reach their full potential.. ooooooooooo Camden LD Plan February 2014/33

34 UNDERSTANDING LEARNING DISABILITIES Appendix 1 1. People with complex needs People with learning disabilities and complex needs include people with co-existing conditions (e.g. autism and attention deficit hyperactivity disorder (ADHD) However, they also include children who have difficulties arising from premature birth, have survived infancy due to advanced medical interventions, have disabilities arising from parental substance and alcohol abuse, and/or have rare chromosomal disorders. Many may also be affected by compounding factors such as multisensory impairment or mental ill-health or require invasive procedures such as supported nutrition and, assisted ventilation. For other people the complex need may relate to the use of behaviours that challenge (eg self-injurious behaviour, aggression towards others) as a form of communication in the absence of full verbal communication skills 2. Profound and multiple learning disabilities (PMLD) There is no accepted definition of profound and multiple learning disabilities, but it is commonly associated with pronounced development delay with significant physical and sensory impairments.. The level of disability is such that the person will require significant levels of support simply to survive - the person may have very few, if any, independent living skills. Some of the main characteristics are: limited vocabulary and communication skills, frequently non verbal; under developed co-ordination skills; lack of logical reasoning; inability to transfer and apply skills to different situations; have difficulty remembering what has been taught; and likely to require significant support day and night, without which they could face potentially fatal consequences. 3 Autism Spectrum Conditions 3.1 Autism spectrum conditions are developmental disorders social interaction, social communication and repetitive and stereotyped behaviours. These are commonly referred to as the triad of impairments. People with full, classic Autism Spectrum Disorder (sometimes referred to as Kanner s Type after the psychiatrist who first noted the condition) usually have associated global learning disabilities, which may be at any level from mild to profound. Asperger s syndrome is the term usually used to describe people within the Autism spectrum who have relatively good expressive skills and average or above average IQ. They are also sometimes referred to as people with high functioning autism, but they are a group of people who can have significant impairments in social, occupational and other functional areas of life. 3.2 It is to be noted that many people on the Autism Spectrum will not require any statutory services, however, the majority of adults need understanding and support from the wide range of agencies that they come into contact with. There is clearly a need in some cases for specialist interventions whilst also acknowledging the need for existing services to develop a workforce which can demonstrate the skills, knowledge and capacity to respond to the needs the needs of the local population on the Autism Spectrum.. Camden LD Plan February 2014/34

35 3.3 Adults with Autism Spectrum Conditions continue to be excluded from accessing statutory health and social care because they do not fit the current ways of thinking about disability or, even if they meet eligibility as defined under fair access to care services, they may not fit within the defined customer group for a given service and therefore experience difficulties in accessing appropriate services. 3.4 Asperger s syndrome is not considered to be a global learning disability in its truest sense because individuals with this diagnosis usually have IQ scores above the cut-off for learning disability ie a score of 70. A quote from Valuing People: A New Strategy for Learning Disability for the 21st Century, Department of Health, 2001, says, This definition [of learning disability] covers adults with autism but not those who may be of average or even above average intelligence, such as people with Asperger s syndrome. 3.5 Adults with Autism Spectrum Conditions in the absence of global learning disabilities are often excluded from accessing statutory health and social care because they do not fit the current ways of thinking about disability. Even if they meet eligibility as defined under fair access to care services, they may not fit within the defined customer group for a given service and may therefore experience difficulties in accessing appropriate services. 3.6 A separate strategy is being developed for people with Autism spectrum conditions, both those in the presence of and absence of global learning disabilities.. Through the delivery plan, we will ensure that key outcomes are achieved and reported to the Learning Disabilities Partnership Board. 4. Young people with learning disabilities 4.1 For the purpose of this commissioning plan 'young people with disabilities' will be defined as those who meet the 'Fair Access to Care Services' critical or substantial eligibility criteria. Young people who would qualify as moderate or low should be offered advice and sign posted to alternative services. A joint transitions pathway between adult s and children s services is established. This is currently being reviewed in light of the Children and Families Bill 2013 and changes to funding. 4.2 According to the Camden joint strategic needs assessment it is anticipated that 20 young people will transition from children s services into adult services over the next 5 years. These young people will span over the range of learning disabilities from low to moderate and those requiring complex support. The commissioning plan incorporates the joint approach we intend to take across Children Schools & Family Services and Adult Social Care. Through this we will establish a range of specialised services where needed; we will be clear about the offer and interventions available from the outset. Camden LD Plan February 2014/35

36 THE NATIONAL CONTEXT Appendix 2 1. The plan sits within the context of local and national policy. Nationally it incorporates the recently published Caring for Our Future: reforming care and support white paper, which sets out the vision for a reformed care and support system. The document supports a renewed focus on preventing social isolation, providing continuity of care and promoting equality (both geographic and cultural groups), customer s accessing their own networks in the community, use of innovation and technology and ensuring the social care workforce deliver good quality care. The White Paper, Caring for Our Future, is organised around five statements from the customer/user perspective. Health and care services for people with learning disabilities will need to demonstrate that they are supporting service users to achieve these aims. These aims are: I am supported to maintain my independence for as long as possible I understand how care and support works, and what my entitlements and responsibilities are I know that people giving me care and support treat me with dignity and respect I am happy with the quality of my care and support I am in control of my care and support 2. Special Educational Needs 2.1 The Children and Families Bill contains a series of measures that are intended to help to address some of the disadvantages faced by the most vulnerable children and young people. One of the main principles is to ensure that services consistently place children and young people at the centre of decision making and support and to ensure that systems and processes enable smoother transition to adulthood. 2.3 Part 3 of the Bill introduces a new, single system from birth to 25 for all children and young people with SEN and their families. The Bill: Introduces a requirement for local authorities and health services to commission education, health and social care services jointly. This includes arrangements for considering and agreeing what advice and information is to be provided about education, health and care provision, and by whom, to whom and how such advice and information is to be provided; places a requirement to publish a clear and transparent local offer of services to support children and young people with SEN and their families; requires greater co-operation between local authorities and a wide range of partners, including schools, Academies, colleges, other local authorities and services responsible for providing health and social care; requires local authorities to involve parents, children and young people in reviewing and developing provision for those with SEN; introduces a single assessment process for those with more severe and complex needs, integrating education, health and care services and involving children, young people and their parents; Camden LD Plan February 2014/36

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