Haringey Joint Strategic Needs Assessment: Adults and Older People. Learning Disabilities

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1 Adults and Older People Learning Disabilities

2 Learning Disabilities Introduction Key issues and gaps Who is at risk and why The level of need in the population Current services in relation to need Service users and carers opinion Expert opinion and evidence base Projected service use in 3-5 years and 5-10 years Unmet needs and service gaps Recommendations for commissioning Recommendations for further needs assessments Key contact Data for this section (Excel, 109KB) Introduction The definition of learning disability is provided in the document Valuing People (Department of Health (DH) 2001) as 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. A report commissioned by the DH (Emerson and Hatton, 2008) estimates that 985,000 people in England have a learning disability (2% of the general population). The majority of these people were adults (828,000). Those with mild learning disabilities who do not use specialist learning disability services are also included in this figure. Of these adults 177,000 (21% of the estimated number of adults with a learning disability) are estimated to be users of learning disability services in England (equivalent to 0.47% of the adult population). Learning Disabilities Published January 2013 page 2

3 Key issues and gaps Health A Haringey health needs self-assessment which has been undertaken in the last two years focused on the following areas: 1. Accommodation and hospital placements 2. Health and disease prevention 3. Safety 4. Equal access New standards for the self-assessment framework for 2012/2013 include access to health, safeguarding: people with complex needs; governance, assurance and quality. Housing Haringey Learning Disabilities Partnership (HLDP) supports the development of a range of housing options available for people. A recent example is the joint work of the adult services and housing directorate to support the development of community based living options for people with learning disabilities in the borough. Haringey supports the housing of 580 people with learning disabilities. Of these, 200 people are cared for in residential care, and 250 people live in their own home or with their carers. Others live in supported living arrangements and Shared Lives scheme (see graph). Learning Disabilities Published January 2013 page 3

4 Figure 1: Accommodation for People with Learning Disabilities in Haringey Haringey has an award winning Shared Lives scheme which provides family accommodation for 28 people with a learning disability'. More than half of people with a learning disability in Haringey live at home, with some family members acting as carers. Figure 2: The age distribution of people living with a carer in Haringey Learning Disabilities Published January 2013 page 4

5 Who is at risk and why People with profound and multiple learning disabilities, people with learning disability and a mental health need, people living with older carers, people with learning disabilities and dementia, young people in transition living out of borough and wishing to return to their local community and people placed by other boroughs in Haringey (Learning Disability Commissioning Framework). In addition BME groups with LD; people with various syndromes e.g. Down Syndrome; people with sensory impairments; other minority groups e.g. Irish Travellers, Gypsy, Roma, immigrants, people without clear immigration status in the UK. The level of need in the population In Haringey, 580 people receive services from the Local Authority in relation to their learning disability. Of these, half live in the community with help at home and half live in the community and are in receipt of a personal budget. There are currently 44 people with learning disability aged over 65 years. Nearly 60% of this group are cared for in residential care and the rest live in their own home or in an adult placement. There are 56 adults with Down syndrome living in Haringey. People with profound and multiple learning disabilities (PMLD) and adult social care provision People who have the highest levels of need are often referred to as having profound and multiple learning disabilities (PMLD). People with PMLD generally have lower levels of IQ coupled with some sensory loss and/or physical impairment. There are often particular difficulties with communication. The World Health Organisation definition of PMLD is as follows: The IQ in this category is estimated to be under 20, which means in practice that affected individuals are severely limited in their ability to understand or comply with requests or instructions. Most such individuals are immobile or severely restricted in mobility, incontinent, and capable at most of only very rudimentary forms of non-verbal communication. They possess little or no ability to care for their own basic needs, and require constant help and supervision Learning Disabilities Published January 2013 page 5

6 Haringey has 17 young people with a PMLD in transition. Current services in relation to need Haringey Learning Disabilities Partnership, (HLDP) has been in place since 2003 and provides integrated health and social care services for people with learning disabilities and their carers. The partnership aims to support people with learning disabilities achieve independence and life-time well-being. Haringey Learning Disabilities Partnership supports the following functions: Assessment and care management Assessment and treatment of people with learning disabilities and mental health needs (CPA - Care Programme Approach) Assessment and management of people with complex needs; Assessment and management of people who have learning disabilities and Autistic Spectrum Condition Assessment and management of people who have challenging behaviour Health and social care staff who support management plans are social workers, speech and language therapists, physiotherapists, occupational therapists, music therapists, psychologists and psychiatrists HLDP also has a number of provider services which includes residential care Range of day services, employment projects, respite care, Shared Lives and community support Health promotion, health surveillance, and health education Support advice and education for carers Other Services There are a number of well established voluntary sector organisations, namely HAIL (external link) and Mencap Advocacy, who provide residential care, supported housing, advocacy and information. Furthermore there are a number of independent sector organisations that provide residential care, residential care, personal assistants, home care and housing services. All provider organisations in Haringey are supported through monthly provider forums. All are supported to achieve and Learning Disabilities Published January 2013 page 6

7 maintain quality standards and are subject to registration and inspection by the Care Quality Commission (external link). Adult Provision for people with PMLD There are now more opportunities for people with PMLD to live in supported accommodation or at home with outreach support and day care. The HLDP is developing an innovative health model. Key elements are summarised briefly below: The model incorporates three discrete but cohesive heath service components. The elements common to each component are a person-centred approach to providing care, treatment in the best place for the person, and utilising hospital care more appropriately Figure 3: Community based complex health needs model of service In addition to specialist health provision there are a number of in-borough local authority Day Opportunities and a range of commissioned services, eg Area 51 (external link) and Development and Learning opportunities (DALO) (external link) which support people with PMLD. Learning Disabilities Published January 2013 page 7

8 Service users and carers opinion Through the operation of the Haringey Learning Disabilities Partnership (HLDP) Board, a multi-agency Partnership Board, which is co-chaired by self-advocates, stakeholders have the opportunity to drive the development and continuous improvement of the service as a whole, for example, the annual away day was attended by over 100 people. A number of service user groups managed by the voluntary sector, Haringey MENCAP, HAIL (external link) and Markfield (external link) feed in to the Partnership Board. Furthermore there is a very active and lively carers forum that provides regular feedback and influences the development of services. Service users and carers are involved in focus groups, staff selection and interviews, and presentations. Expert opinion and evidence base Valuing People (2001) (external link) outlines the strategic direction for people with learning disabilities. Valuing People Now (2009) (external link) confirms the principles of Valuing People (2001) Death by Indifference (2007) (external link) Case studies of care quality in people with learning difficulties. Death by Indifference (2012) (external link) is an update from the original report identifying continued problems with the quality of health care. Healthcare for All (2008) (external link) demonstrated the inequality in treatment and health outcomes in people with learning difficulties Six Lives (2009) (external link) Six lives: the provision of public services to people with learning disabilities highlighted the lack of service coordination among agencies involved in learning disabilities The Department of Health Operating Framework for 2011/12 (external link) Regional learning disability performance and self-assessment framework Learning Disabilities Published January 2013 page 8

9 No Health without Mental Health (2011) (external link) sets out six main outcomes to be achieved over the next 10 years to improve the mental health and wellbeing of the nation. How people with learning disabilities die (external link) Report on ages and causes of death for people with learning disability. Health Inequalities and People with Learning Disabilities in the UK Implications and actions for commissioners. Evidence into practice report no. 1 (revised) (external link) Guidance for commissioners- based on the Health Inequalities and People with Learning Disabilities in the UK: 2011 report, this evidence into practice report sets out the determinants of health inequalities, and asks what they mean for social care including social care commissioners, care managers/social workers, providers and support workers. Update on CQC Learning Disability Review (external link). This is a review in response to abuse of people in Winterbourne View a private learning disability hospital. DH is currently conducting a review Terms of Reference DH Review following events at Winterbourne View Hospital (external link) which is expected to report in May Healthy lives, healthy people: our strategy for public health in England White Paper (2010) (external link). This White Paper sets out the Government's long term vision for the future of public health in England. The aim is to create a 'wellness' service (Public Health England) and to strengthen both national and local leadership. London Health Observatory (external link) collection of documents on learning disability Emerson E, Hatton C (2008) People with learning disabilities in England (External link, PDF 571.9KB). Lancaster: Centre for Disability Research (CeDR), Lancaster University Publications from the Learning Disability Coalition RCGP (2012) Improving the health and well-being of people with learning disabilities: an evidence-based commissioning guide for Clinical Commissioning Groups Royal College of Psychiatrists (2003) Meeting the mental health needs of adults with a mild learning disability Royal College of Psychiatrists (2007) Challenging behaviour: a unified approach Learning Disabilities Published January 2013 page 9

10 Projected service use in 3-5 years and 5-10 years The prevalence of learning disability in the general population is expected to rise by around 1% per annum for the next 10 years and to grow overall by over 10% by It is also expected that there will be a growth in the complexity of disabilities. In addition, there are increases anticipated in the proportion of younger English adults from South Asian minority ethnic communities where the prevalence of learning disability is higher. The projected Haringey learning disability baseline estimates for the next 5 and 20 years are shown in figure 4 and figure 5 respectively. Figure 4: Haringey learning disability baseline estimates Figure 5: People aged predicted to have a learning disability, by age Learning Disabilities Published January 2013 page 10

11 Figure 6: LD Population estimates in the next 25 years (Ages 18-64) The graphs above, (figures 4 and 5) show that the overall number of people with learning disabilities is expected to increase slightly. However, there are significant demographic changes within the age groups that will have an impact on service delivery. There will be a decline in the number of young people with learning disabilities going through transition and an increase in the number of people with learning disabilities living beyond 45 years of age. These changes are on a background of an overall increase in the elderly population which is likely to put added pressure on resources. Unmet needs and service gaps Older people with learning disabilities Increase in number of supported living which is designed according to the needs of people with learning disability Social housing for people with complex health needs Dementia support Range of respite options for people with additional complex needs Local further education opportunities Additional employment opportunities Learning Disabilities Published January 2013 page 11

12 Specialist health support in particular in relation to diseases of old age and obesity; Down syndrome; Autistic Spectrum Conditions Recommendations for commissioning 1. Review 'out of borough' placements - with a view to returning clients (where appropriate) to live in Haringey - to include those clients placed in private hospitals 2. Implement relevant recommendations of the NHS self-assessment framework for Haringey 3. Commission the proposed community health model of health service delivery; 4. Develop in borough autistic specific provision - both day opportunities and housing 5. Development of supported living options which will support the following: people in transition form children s to adult services people returning from out of borough placements people with dementia 6. Improve quality of health experience of people and their carers through working with acute hospitals, mainstream community health services and GP commissioners. Recommendations for further needs assessments Comprehensive needs assessment for people with autism. back to top Key Contact Beverley Tarka: Head of Service, Learning Disabilities Partnership beverley.tarka@haringey.gov.uk Learning Disabilities Published January 2013 page 12

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