2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism
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Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 www.enfield.gov.uk www.enfieldccg.nhs.uk Enfield Clinical Commissioning Group
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Adult Social Care Commissioning Team Health, Housing and Adult Social Care April 2013
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 1 Contents Executive Summary 3 Section 1. Introduction 4 1.1 Aim 4 1.2 The Scope of the Strategy 4 1.3 Developing the Strategy 4 1.4 What is Autism? 4 1.5 Terminology 6 1.6 Vision for Services 6 Section 2. National and Local Guidance, Research and Best Practice 7 2.1 National Guidance and Policy Context 7 2.2 Local Context 8 2.3 Research and Best Practice 9 Section 3. Current and Future Demand 11 3.1 Population Projections and Prevalence Rates 11 3.2 Number of people with autism known to services 12 3.3 Consultation with adults with autism and their carers 12 3.4 What can we conclude about the support needs of people with autism living in Enfield? 13 Section 4. Market Analysis 14 4.1 Map of services 14 4.2 Service Quantity 15 4.3 Service Quality 15 4.4 Contracting arrangements 18 4.5 Current Funding 18 4.6 Future funding to support the implementation of the strategy 19 Section 5. Gap Analysis and Design of Future Provision 20 Section 6. Implementation and Monitoring Arrangements 25
2 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Appendices Appendix 1. National Policy Context 26 Appendix 2. Summary of Research and Best Practice 27 Appendix 3. Needs Analysis 33 Appendix 4. Map and Description of Current Services 40 Appendix 5. Development of Autistic Champions – Case Study Examples 46 Appendix 6. Diagnostic pathway and support and appraisal of options 48 Appendix 7. Example Care Pathway 56 Appendix 8. Action Plan 2013-2018 57 Appendix 9. Terms of Reference Adult Autism Steering Group 64 Appendix 10. Abbreviations used 66 References 67
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 3 Executive Summary • Autism is a lifelong developmental disability of existing family or carer support. The key that affects how a person communicates with, needs of this group are around communication and relates to, other people. The severity and and social skills as well as practical help with presentation of difficulties can vary significantly. daily tasks such as cooking, budgeting and navigating access to services. Without this • This strategy meets the requirements of the support some are likely to end up requiring Autism Act 2009 and associated statutory high cost intensive services in the future. guidance. It sets out five key objectives: • About 50% of those with autism are –– Increasing awareness and understanding of considered to have HFA, with the remainder autism. having varying degrees of learning disability. It –– Developing a clear and consistent pathway is estimated that there are around 900 people for diagnosis. with HFA in Enfield. –– Improving access for adults with autism to • The number of children and young people the services and support they need to live with a diagnosis of autism moving to adult independently within the community. services is expected to grow by 59% between –– Enabling local partners to develop relevant 2011 and 2016 and the strategy offers an services for adults with autism to meet opportunity to co-ordinate and improve identified needs and priorities. provision for this vulnerable group. –– Helping adults with autism into work. • The strategy has been informed by local and national research and best practice, and is • It focuses on adults with High Functioning built upon an analysis of current and future Autism (HFA) who have average or above need. The development was led by the average intelligence (IQ of 70 or above). This Enfield Adult Autism Steering Group. Local includes those with Asperger’s Syndrome. stakeholders, including users and carers have This is because there are already services informed the development of the strategy. It in Enfield for people who have autism and a sets out how Enfield Council, Health and a learning disability. Whereas it is often assumed range of partners across the whole community that those with HFA do not require services. In will develop and improve services over the fact in reality their autism can be just as severe next 5 years within the context of severe and disabling. With the exception of the small financial constraints. number with high needs, the majority of people with HFA are not eligible for mental health or • It proposes the creation of an autism team learning disability services under the current to be the catalyst and focus for improving interpretation of Fair Access to Care criteria. diagnosis and assessment as well as increasing awareness and developing good • The majority will require low level preventive practice. The autism team would help to re- support at varying stages in their lives to align existing resources to better respond to maximise their independence and prevent the needs of people with HFA. mental health problems and the breakdown
4 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Section 1. Introduction 1.1 Aim 1.3 Developing the Strategy The draft strategy and the accompanying The strategy has been informed by local and Implementation Plan sets out how Enfield Council national research and best practice, and is built and its partners intend to develop services upon an analysis of current and future need. from 2013-2018. This will begin to meet the Local stakeholders, including users and carers aspirations within the Autism Act (2009) and have informed the development of the strategy. It the requirements of subsequent guidance. The has been overseen by the Autism Steering Group Autism Act (2009) and national autism strategy whose membership was revised in May 2012 to sets out a vision that all adults with autism will be give it a more strategic focus. The Strategy has able to live fulfilling and rewarding lives within a been built on the work originally undertaken by society that understands and accepts them.1 The the Steering group and this helped to identify how draft strategy is set within the context of severe services in Enfield can be developed. resource constraints, and no additional central government funding. This has inevitably resulted Further consultation will be carried out, and any in modest developments and a focus on what feedback received will inform both the strategy can be done within existing resources. and the Implementation Plan. 1.2 The Scope of the Strategy 1.4 What is Autism? The strategy focuses on adults (over 18) in Autism is a lifelong developmental disability Enfield who have Autism and who do not have that affects how a person communicates with, a learning disability. The rationale for the scope and relates to, other people. The severity and of the strategy is that people with an Autistic presentation of difficulties can vary significantly Spectrum Condition who also have a learning and so an “Autistic Spectrum” is talked of.2 disability are assessed for social care services The word spectrum is used because, while all through the learning disability service. A key people with autism share certain difficulties, their issue that needs to be addressed is that young condition will affect them in different ways. people with autism (some of whom have been supported in childhood) are finding themselves There is still debate and confusion among without any support when they reach 18 years clinicians and researchers over the causes, unless they have another disability. This is either diagnosis and categories of autism. Autistic due to not being eligible for services based on the Spectrum Conditions (ASCs) are classified interpretation of eligibility criteria; or it is due to as developmental disabilities in the ICD- difficulty accessing services that they are eligible 10 diagnostic manual in the same class as, for but which do not adequately cater for the Intellectual Disabilities or Attention Deficit needs of people on the higher functioning end of Hyperactivity Disorder,3 complex lifelong the autistic spectrum. conditions involving “pervasive developmental disorder.
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 5 Diagnosis of the condition is based on behaviour. Furthermore, it is common for people with autism Clinicians have agreed that ASCs involve to have unusually high or low sensitivity in one or difficulty in three areas, known as the “triad of more of their senses. Frequently hypersensitivity impairments”.4 results in extreme distress and pain. It is easy to see how these two factors result in the • Difficulties with social communication: behaviours listed above. As a result people with language acquisition delay, and difficulty autism often engage in obsessive, compulsive understanding and using speech, writing, and/or, ritualistic behaviours as a way of coping. body language, mood, gesture, and personal Naturally engagement in these behaviours can space (e.g. language, gestures, facial result in a range of challenges for those people expressions and tone of voice). (and organisations) supporting people with autism. • Difficulties with social interaction: problems The severity and presentation of difficulties can acquiring and using social skills which vary significantly and so an “Autistic Spectrum” can result in isolation, difficulty processing is talked of.5 The word spectrum is used emotional information, difficulty initiating social because, while all people with autism share contact and adhering to social rules and certain difficulties, their condition will affect them thus difficulty sustaining relationships (e.g. in different ways. Some people with autism are recognising and understanding other people’s able to live relatively ‘unsupported’ lives and feelings and managing their own). others need a lifetime of specialist support. While some people with autism may not speak, or will • Difficulties with social imagination: being have limited language skills, others have good unable to correctly distinguish the real from language skills but have difficulty understanding. imaginary, finding it difficult to be reflexive, to inhibit behaviour, and to exhibit repetitive Asperger Syndrome is a form of autism. People behaviours and obsessional interests (e.g. with Asperger Syndrome are often of average problems in understanding and predicting or above average intelligence. They have other people’s intentions and behaviour and fewer problems with speech but may still have imagining situations outside their own routine). difficulties with understanding and processing language. The patterns of behaviour listed above are useful for diagnosing autism but they do not tell us Diagnostic criteria are revised periodically, taking why people with autism behave in the way they into account the most up-to-date research. One do. To understand autism properly we need to of the proposed changes to the fifth edition of think about some of the underlying difficulties the Diagnostic and Statistical Manual of Mental people with autism have which may explain the Disorders (DSM-5), to be published in May behaviours they display. 2013, would eliminate Asperger syndrome as a separate diagnosis, and fold it under autistic The majority of people who do not have autism disorder (autism spectrum disorder), which would are multi-tracked/multi-attentive. This means be rated on a severity scale. This is helpful as that they can receive and process a variety of it will streamline diagnostic criteria. However, information from a number of senses at the same the minimum criteria for level 1 severity ‘Needs time. However, most people with an ASC tend to Support’ are considerably higher than the be (to a greater or lesser extent) mono-tracked. minimum criteria for diagnosis. This may result in If you can only process one bit of information making it even harder for people with autism to at a time it means that the speed at which you access the support they need. process information is very slow. It also means that you constantly miss information and never get the full picture. As a result the world seems confusing and unpredictable and you often misinterpret the situations and people around you. This often leads to feelings of anxiety, paranoia, frustration and anger.
6 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 1.5 Terminology The strategy identifies the following as being key to people with autism experiencing good outcomes: The literature uses a range of terms to describe adults with autism. This report will use adults with • The right to receive an assessment of need autism, adults with an ASC (Autistic Spectrum from social services. Condition) or ASD (Autistic Spectrum Disorder). • To get the same opportunities for education HFA – Higher Functioning Autism will be used and further education as everyone else. to describe people with an IQ of 70 or above. • To be supported to get a job and stay in work. This will include those with Asperger’s Syndrome (AS) although in the literature this is sometimes a • To be able to choose where to live – just like separate category. anyone else. • To have relationships and social networks. A glossary of abbreviations and terms used is set out in Appendix 10. • To have their health needs properly met in a way which is appropriate for someone with autism. 1.6 Vision for Services • To be safe from hate crime and discrimination. Both the Human Rights Act (1998) and The • To live in a society where people understand, Equality Act (2010) enshrine the right for every respect and accommodate difference. person, regardless of disability, race, gender or • To receive support to live independently, as culture to be entitled to such things as housing, appropriate.7 education, health care and freedom from discrimination among other things. The research, both nationally and locally, indicates that currently people with autism tend not to The Autism Bill (2009) and subsequent strategy achieve good outcomes. The vision for services in ‘Fulfilling and rewarding lives, the strategy for Enfield is to ensure that the rights of people with adults with autism’6 outlined the following vision autism are upheld, that the appropriate services for adults with autism: are delivered and that people with autism start to achieve their desired outcomes. ‘All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.’
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 7 Section 2. National and Local Guidance, Research and Best Practice This section firstly sets out the In June 2012 NICE set out detailed guidelines for the recognition, referral diagnosis and National context in terms of policy management of adults on the autistic spectrum.9 and national guidance for services This guidance recommends that each area for adults on the autistic spectrum. should establish a specialist community-based multidisciplinary team for adults with autism to It then provides a summary of the have a key role in the delivery and co-ordination of: local context including how other local strategies impact on the • Specialist diagnostic and assessment services. provision of services for adults with • Specialist care and interventions. autism in Enfield. Finally, research • Advice and training to other health and social care and best practice are discussed. professionals on the diagnosis, assessment, care and interventions for adults with autism (as not all may be in the care of a specialist team). 2.1 National Guidance and Policy • Support in accessing, and maintaining contact Context with, housing, educational and employment The Autism Act became law in November 2009 services. and was the first ever condition-specific piece of legislation in England and Wales. • Support to families, partners and carers where appropriate. In response to the Act becoming law the • Care and interventions for adults with autism Department of Health published a National living in specialist residential accommodation. Strategy for Adults with Autism.8 The strategy sets out 5 key objectives: • Training, support and consultation for staff who care for adults with autism in residential • Increasing awareness and understanding of and community settings. autism. The autism strategy should be seen as sitting • Developing a clear and consistent pathway for alongside wider policy direction started by the diagnosis of autism. previous government and broadly continued by • Improving access for adults with autism to the current government in 2010 as reflected in: the services and support they need to live independently within the community. • Liberating the NHS: Equity and Excellence which became enshrined in the Health and • Enabling local partners to develop relevant Social Care Act (2012) services for adults with autism to meet identified needs and priorities. • The Localism Act (2011) • Helping adults with autism into work. • A vision for adult social care: Capable communities and active citizens (2010) • The Equality Act (2010).
8 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 The key themes running through these wider • To focus services to maximise and maintain policy documents are: people’s health, independence and inclusion. • To develop and maintain accessible services, • Localism and partnership – Involving including fully accessible premises and homes. devolution of power and empowering communities to have more say in how • To develop integrated community pathways services are delivered locally. There is also and services by working in partnership and encouragement for public sector staff to co-coordinating development and investment. form social enterprises or employee led • To recruit and retain a workforce that is mutuals. Clinical Commissioning Groups will trained, reliable and efficient across the be given more freedom and accountability to Council and NHS Enfield and to work with the commission care for their local communities, Independent and Voluntary and Community and this perhaps represents an opportunity to Sectors to ensure that the same is true for get autism services on the agenda. There is their workforce. also an emphasis on a greater integration of health and social care and the need to work • To focus on the quality of service provided to in partnership with a range of stakeholders service users, carers and patients. including the VCS. One of the key objectives of the Enfield Joint • Focus on outcomes – Paying more attention Strategic Needs Analysis (JSNA) is to narrow to the impact of a service or intervention and the gap around health inequalities including life its results has been a central theme for the expectancy.10 Autism is one of the four long- commissioning and provision of services for a term conditions identified as a priority, along with number of years, at strategic, operational and dementia, learning and physical disabilities. individual levels. Mental health remains a key priority for Enfield • Personalisation – This is at the centre of the and the JSNA states that there is a widely held vision to transform adult care and respond belief amongst professionals that there are poor to the needs of individuals by giving more health outcomes for people with mild/moderate choice and control to the consumers of mental illness, young people in transition from services. Unless adults with autism are eligible Child and Adolescent Mental Health Services for services and can access advocacy and (CAMHS) and for people of some black and brokerage services, then the whole area of minority ethnic groups. Autism is not specifically direct payments and personal and individual mentioned but forms part of the groups budgets will have little meaning. mentioned above. More details of the National context are set out in Although the Carer’s Strategy11, the Housing Appendix 1. Strategy12 and the Supporting People Strategy13 do not specifically mention the needs of adults with autism and their carers, this could be 2.2 Local Context addressed in any revision or refreshing of these The strategy should be consistent with the seven strategies. Adults with autism should also be key joint commissioning aims Enfield has agreed considered when the Joint Health and Wellbeing in response to the White Paper “Our health, our Strategy is drawn up. care, our say: a new direction for community services”: The current development of the Voluntary and Community Sector Strategic Commissioning • Increase the choice and control in decision Framework offers a good opportunity to address making over their individual services for service some of the needs of those with HFA within users, patients and carers across the Council generic services particularly around Information, and NHS Enfield. Advice and Guidance; Advocacy and Support; • Increase the individual and collective influence Prevention Services; and Direct Payments of service users, patients and carers on Brokerage. shaping future services across the Council and NHS Enfield.
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 9 The Council, PCT and CCG (Clinical –– Be delivered in detail for those conducting Commissioning Group) have all agreed that the assessments, those working directly with development of adult autism services is a shared people with autism and the managers of priority. these people.17 –– Alter behaviour and practice among key 2.3 Research and Best Practice professionals – it isn’t enough to attend The National Autism Strategy (2010) identified training but then carry on as before. that outcomes for adults with autism could be –– Include input from people with autism and improved in five main ways: their families. • Increasing awareness and understanding of –– Cover awareness raising about Asperger’s autism. Syndrome and high-functioning autism – the lack of support offered to people with • Developing a clear and consistent pathway for autism of these types means that staff may diagnosis of autism. have less awareness and experience here, • Improving access for adults with autism to so more needs to be done to redress the the services and support they need to live balance.18 independently within the community. 2.3.2 Developing a clear and consistent • Enabling local partners to develop relevant services for adults with autism to meet pathway for diagnosis identified needs and priorities. • Childhood prevalence studies suggest autism occurs in approximately 1% of the population, • Helping adults with autism into work. and that for every two known cases, there are three undiagnosed cases that might need a There is considerable evidence to support good diagnosis at some point in their lives.19 practice in each of these areas. Some of the key findings that have informed the development of • Processes should be in place for access to a this strategy are summarised below. multidisciplinary diagnostic assessment. There should also be appropriate post diagnostic 2.3.1 Increasing awareness and support to the individual and carers including understanding of autism an offer of a community care and carer’s assessment.20 • There is a need to develop the understanding and competency of community professionals • NICE clinical guidelines on recognition, referral working in a range of agencies so that they and diagnosis recommends that specialist can respond appropriately to the needs of autism teams should be established in every people with autism (SCIE, 2011).14 area.21 • It is essential that good quality training is • Statutory guidance states a lead professional available to relevant community professionals should be appointed to develop diagnostic and that this is ongoing and sustainable. and assessment services.22 Wherever possible, the training should be • Clear, consistent diagnostic pathways result in accredited by an independent third party or cost savings.23 university (BPS, 2011).15 • Training is key, and should:16 –– Cover how to recognise autism, and how to make reasonable adjustments to accommodate people with autism. –– Be delivered efficiently – this could mean sharing training between organisations, or including autism in general equalities training, for some staff.
10 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 2.3.3 Improving access for adults with 2.3.4 Enabling local partners to develop autism to the services and support they relevant services for adults with autism to need to live independently within the meet identified needs and priorities community • The adult autism strategy recommends setting • Research by the National Autistic Society up a local autism partnership board or a similar suggests that nearly two thirds of adults with mechanism that “brings together different autism do not have enough support to meet organisations, services and stakeholders their needs, and one in three adults with locally and sets a clear direction for improved autism are experiencing severe mental health services”.30 difficulties due to lack of support.24 • It is well documented that there is a lack of • Current housing is likely to require adaptation clarity over whose responsibility it is to provide to meet the needs of people with autism. For support for adults with autism. More effective example, homes for people with autism often joint working between health and social care is require consideration of sensory sensitivity to critical to improving outcomes at a local level. certain sounds, lights, colours and smells.25 It is therefore essential an integrated planning forum that is responsible for developing • The characteristics associated with an ASC, autism provision across health and social care such as impairments in social interaction, is developed. Such forums do not require social imagination and social communication additional funding to set up and they are a key mean developing friendships and social mechanism to addressing the need for a more networks can be extremely difficult. However, collaborative approach to public service where issues of loneliness and isolation can be agencies join up resources, both financial and overcome with appropriate social skills training human, to provide a more coherent response and support. Improvement in social inclusion to local needs.31 for adults with autism will only be achieved if policies are successfully implemented and society makes reasonable adjustments.26 2.3.5 Helping adults with autism into work • Only 15% of adults with autism are in paid • Advocacy is a vital need for people with autism employment compared to 48% of people with to access services.27 general disabilities. A much greater number • People with autism are vulnerable due to their of people with autism want to work and could social and communication difficulties, so they do so if able to access appropriate support. have a particular need for understanding and Autism-specialist supported employment appropriate support from the criminal justice schemes result in significantly higher rates system.28 of employment, as well as employer and employee satisfaction.32 • Further Education colleges should be working towards providing effective provision for all Further information about research and best young people. A successful and cost effective practice is provided in Appendix 2. solution to the development of local Further Education is a system of truly personalised responses which create a greater chance of people accessing further education and remaining in their communities.29
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 11 Section 3. Current and Future Demand This section summarises the needs 3.1.2 Summary of prevalence estimates analysis (further information can • 1% of adults (and children) have autism resulting in an estimate of 1,831 adults 18-64 be found in Appendix 3). It outlines in Enfield in 2011. the methodology that has been • The number of people aged 18-64 predicted used in Enfield and summarises the to have autistic spectrum disorders is findings. Research and information predicted to increase from 1,831 in 2011 to about prevalence rates is used 1,956 in 2030. to make population projections • There is also a marked increase (40%) in the number of older adults aged 55-64 rising from currently and going forward. 276 in 2011 to 388 in 2030.34 This is in line Information about how many people with growth in the population aged 65 and with autism are currently known to over. Assuming a 1% prevalence rate, the services in Enfield is also described numbers aged 65 and over predicted to have autism would rise from 388 in 2011 to 538 in and finally details are outlined about 2030. what people with autism and their • Of these 50% have LD and 50% have HFA (IQ families say their needs are. of 70 or above). • 20-33% of adults with LD have autism. 3.1 Population Projections and • 60% of men with profound learning disabilities Prevalence Rates and 43% of women with profound learning 3.1.1 What methodology have we used in disabilities have autism (The more profound Enfield? the LD, the more likely they are to have autism if assessed.). In Enfield we have applied national prevalence rates to local demographic information. • Of the 50% with HFA, 30% are likely to Population growth figures have been used to experience MH difficulties. estimate future prevalence and information • Based on an estimated prevalence of HFA has been collected from SEN statements and (ASC and IQ ≥70) of 50% of all adults 18-64 from the recent London Council’s and MIME with autism, and the reported rate of 30% Consulting Forecasting Project on children and experiencing a mental health problem, we young people with autism moving on to become might expect at least 275 adults with an ASC adults over the next few years.33 in Enfield to have a co-occurring mental health problem such as depression or anxiety.
12 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 • Men are nine times more likely to have autism 3.3 Consultation with adults with than women (although recent research suggests that the rate in women may be autism and their carers underestimated). 3.3.1 What methodology have we used in • For the Enfield population – as at April 2010, Enfield? the Pupil Level Annual School Census 2010 In 2009 and 2010 the Autism Steering Group (PLASC) shows that out of the entire school organised a number of events that were jointly population in Enfield there were 443 (0.9%) facilitated with the National Autistic Society (NAS). pupils aged 0-19, identified as autistic via a These included three consultation workshops Statement of Special Educational Needs or with adults with autism and their carers School Action Plus. This figure is clearly similar (separately). There were also a small number of to the 1% prevalence rate identified in adults. 1:1 interviews of adults with autism as well some staff who supported individuals in a paid capacity. • The number of children and young people Staff involved in providing community services with a diagnosis of autism moving to adult that might involve adults with autism were also services is expected to grow by 59% between interviewed (e.g. Community Access Librarian, 2011 and 2015/16. In 2010/11 there were Jobcentre Plus, Community Mental Health Team, 170 children aged 11-15 with a diagnosis of Disability Support Officer Middlesex University). autism. They were asked a number of questions including what reasonable adjustments their service had 3.2 Number of people with autism made to accommodate the needs of adults with known to services autism and what issues there were. • The Enfield council database indicates that Discussions with members of the ASG and the 73 adults with autism were known to the local NAS suggest that there is no reason to think authority and receiving services. Of these that things have changed significantly since then five (6.5%) were in either full or part time or that the needs of adults with autism will be employment; 60 (80%) were living in their own substantially different from the needs that have home or with their family and 15 (20%) were been identified regionally or nationally. living in nursing home or residential care. A further 22 had not received services in the 3.3.2 Summary of what adults with autism current year but were on the database. Of and their carers say they need this total of 95, 19 were those with HFA. 11 of whom were receiving services. The information from the consultation activities (which involved approximately 50 participants) • BEHMHT have records indicating that they found that adults with autism said that their biggest are currently providing services to 43 adults priority was having interventions which enabled with HFA, the vast majority of whom (37 or them to be independent as well as helping them to 85%) have a primary diagnosis of Asperger’s develop self-management strategies. They wanted Syndrome (AS). The remaining six have other this to be followed by low-level continued support diagnoses including atypical autism and other to maintain wellbeing. It was felt that facilitative pervasive developmental disorders. support was required to help them gain life skills • Of the 43, 17 (40%) have a single, primary such as managing their finances, moving into diagnosis of AS. The other 26 (60%) have employment, developing friendships, relationships a range of secondary diagnoses including and social networks, cooking, shopping, etc. All paranoid schizophrenia (11) with the remainder those interviewed, emphasised the need to access a mix of anxiety, personality, behavioural and support intermittently to prevent escalation to crisis psychotic disorders. situations. There was also perceived to be a huge gap in psychological services available to those • It is also worth noting that the total number of with HFA. However, it is worthy of noting that adults known to BEHMHT and Adult Social the Improved Access to Psychological Therapies Care with HFA is 62 out of a predicted 915 (IAPT) project in Enfield was little known about. living in Enfield. This represents a “discovery” rate of 7%. Liverpool for example has a rate of The information gained from the consultation 14%. seems to be in line with the national and regional picture about needs and services.
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 13 3.4 What can we conclude about The support needs and potential service responses of these three groups are illustrated in the support needs of people with the table below. autism living in Enfield? The number of people with autism living in We do not know how many more people with Enfield will increase in the next 15 years. This is HFA and their carers in Enfield will come forward particularly striking in the case of children and as a result of greater publicity and promotion young people moving into adulthood over the about clearer diagnostic pathways, assessments next few years with a diagnosis of autism. and easier access to a range of services. We therefore can only estimate the demand Maintaining contact with this group and their for diagnostic assessments, post diagnostic carers following transition into adulthood would support. The NAO report (2009)35 advises that significantly increase the numbers known to adult such specialist services should aim to engage services and enable better planning for current 8% of the local HFA population at any one time, and future needs for this population. half of which are likely to need support services. For Enfield this would represent a target of From all the national and local information it is approximately 37 service users at any one time. clear that the local HFA population will have a range of needs split into three broad groups: We know from other local authorities, that where an infrastructure is put in place to meet some • Those with high needs and are generally able of the needs outlined, the demand for a range to access services at present. of services will increase. Clearly this might need • Those with low needs who require preventive managing and prioritising, but the NAO report services from time to time and are currently does provide some evidence that adopting an not receiving services. early intervention and preventive approach to potential escalation and crisis will be cost neutral • Those with no need for services. over time. Table 1: Support Needs and Potential Service Responses HIGH NEEDS • Severe and enduring mental health problem • Secondary and tertiary mental health • Risk of suicide services • Offenders • Forensic MH services • Severe autistic traits/challenging behaviour • Adult Care Management Services • Physical disability or frailty LOW NEEDS • Unaware they have HFA and why they have a range of • Diagnostic assessment social and other issues • Post diagnostic support and information • Little understanding of the disorder and how to manage it • Social Skills Training • Little or no knowledge of services or potential help available • Information and advice on how to live • Isolated lifestyle and few or no friends with the disorder • Unable to cook, shop, travel independently, budget or • Practical support with correspondence, maintain personal hygiene forms, benefits etc • Difficulty dealing with bureaucracy, completing forms, • Practical support with everyday tasks claiming benefits • Improved awareness and access to • Difficulty finding work or not working mainstream services • Difficulty keeping a job • Cognitive Behavioural Therapy • Dependent on family/living with family • Social Clubs/Activities NO CURRENT NEED • No problems with daily living tasks • Living independently or in a stable relationship • No services required • In Employment Adapted from Westminster Joint Commissioning Strategy for Adults with Asperger Syndrome 2010-2013
14 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Section 4. Market Analysis A market analysis has been • Minimal formal diagnosis (and difficulty in getting a diagnosis) prevented access to some undertaken to provide a picture of additional support services. existing local services within Enfield. • College Courses or skills development courses It also refers to some services outside specifically for those with HFA. the Borough as specific services for • An Asperger Group for service users – the one those with HFA are very few. running in Barnet was too far. • More knowledge about the needs of those 4.1 Map of services with HFA so that a Centre could engage them An overview of services that are available in more. Enfield and surrounding areas is attached as Appendix 4. There are very few specific services A continuing theme throughout the development for people with HFA, so details are also given of the strategy, and no different from the national where mainstream services make recognition picture, has been that responding to the health of the needs of people with HFA and have and social care needs of adults with HFA often made some reasonable adjustment in how their falls between LD and MH services. BEHMHT are services are promoted and delivered. It is not a not currently commissioned to provide treatment comprehensive list and it is one that is evolving for adults with neurodevelopmental disorders as mainstream services and those within the including ADHD or Autistic Spectrum Disorders Community and Voluntary sector address how where there is no associated co-morbidity. they can adapt some of their services to make Currently they do provide some services to them accessible and relevant to those with HFA. people with HFA with a primary diagnosis of Aspergers, with a recent list indicating 43 people A questionnaire was recently sent to the with Aspergers, of which 17 have a primary Community and Voluntary Sector, including diagnosis of Aspergers and no secondary Supporting People and Floating Support diagnosis. The Trust have stated that they will be providers asking them about how many people forwarding new referrals they receive, including they had provided services to with autism, and those from GP’s, to the relevant commissioners. how many of these were with HFA. Of the 17 The commissioners need to clarify what they responses 8 had provided services to a total of consider should and could be provided under the 42 people with HFA, or suspected HFA in the existing block contract. past year. Responses to a question about gaps in services included: • The good language skills of those with HFA masked their difficulties. This resulted in many people with HFA being assessed as not eligible for FACs.
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 15 4.2 Service Quantity This should include support to live independently, with carers or within supported housing provision The numbers of adults known to be receiving covering areas such as general social skills, services is set out in the needs analysis in budgeting, welfare rights, communication and Appendix 3. relationships. Service provision should be in line The services provided to the 11 adults with HFA with the draft VCS Commissioning Framework through the local authority are: where one of the priorities is “To strengthen the availability of targeted services which support • 1 Residential Care Placement prevention and early intervention that aim to keep people well and living independently in • 1 Adult Placement the community, reducing the need for statutory • 3 Day care with 1 also receiving personal care services”.36 This could include helping adults and Direct Payments with autism find meaningful work and day opportunities. • 3 Professional Support • 3 Additional Support in supported tenancies The current main services provided within the (1 also receiving Direct Payments). Private and Voluntary sector which focus wholly or to a significant extent on those with HFA The services provided to 43 adults via BEHMHT include: are provided through a variety of teams and settings including: • Specialist employment services provided by Prospects (run by NAS). • 15 (35%) through the Severe and Complex Non-Psychotic service line by the Enfield • Day opportunities, outreach, supported Complex Needs Team and by dual diagnosis living and floating support by Marcus and network; Marcus, Outward Supported Living Services (Carterharch), One Housing Group, St. John • 10 (23%) through Psychosis service line by the of God Hospitalier Services, Person-centred Enfield Community Rehab Team, S&R Team Day Opportunities, and Roseneath (recently and the Wellbeing Team; opened and part of Priory Group). • 8 (19%) through Common Mental Health • Residential services provided by Robinia Care. Problems by the West Enfield Primary MH Team and Enfield PC Psychological Therapy Service; 4.3 Service Quality • 5 through Forensic by Inpatients and Outreach; The consultation with carers or other stakeholders has revealed that the issue is a • 4 (9%) through Crisis and Emergency by in lack of services rather than dissatisfaction with patient and day care; those that are provided for those with HFA. The • 1 (2%) through Dietetics (eating disorders). following analysis discusses the degree to which various service areas are lacking. The analysis is The Council is intending to commission a range based on interviews with people with autism, their of generic services in the areas of Information, families, staff from provider organisations, the LA Advice and Guidance; Advocacy and Support. and BEHMHT. (Advice, guidance and advocacy may be particularly required when the welfare benefit 4.3.1 Identification and diagnosis changes are introduced from April 2013). Currently Enfield does not have a formal diagnostic service. GPs can send a referral to Enfield’s Health Commissioners who decide whether a specialist diagnosis will be paid for at Central and North West NHS Foundation Trust (CNW) or at South London and Maudsley NHS Foundation Trust (SLaM). BEHMHT are currently running a pilot diagnostic service with referrals currently coming from Barnet and Haringey.
16 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 4.3.2 Assessment of need Potential students are likely therefore to need Currently people with HFA do not have a advice and help in obtaining it. clear route to a FAC assessment. There are no specialist services providing assessments Southgate and Barnet College has specific of their care needs. Generic assessments, courses for young learners who are not yet ready particularly if there is an accompanying physical for mainstream courses aimed at developing their disability will be provided by Care Management independence, life and work skills. SC also has a Services. The Primary Mental Health Care Team department devoted to serving college students will undertake an assessment where someone with disabilities in mainstream courses. It is also appears to have a mental health need understood that it is planning to develop a local or perhaps their autistic traits are considered mini-college specifically for people with autism. severe. For those receiving a FAC assessment The College of Haringey, Enfield and North East there is some anecdotal evidence locally, London (CONEL) is a vocational further education backed up by experience nationally that without college, run by Ambitious about Autism. It aims to assessors skilled in the needs of those with HFA, provide education and training to their students, assessments are likely to result in a person being irrespective of past achievements. CONE are assessed as being more able than they are due developing provision from April 2013 on their to the often hidden and unexpressed difficulties Enfield campus working with Tree House School, experienced by this group. in Muswell Hill which is also run by Ambitious about Autism. 4.3.3 Supported Employment IDEA covering the Enfield area specialises on Capel Manor College is London’s only specialist those with autism and includes a caseload horticultural centre that offers full and part-time of about eight of those with HFA. A work courses leading to national qualifications which psychologist is also available to advise staff and support progression to employment or further employers and potentially the unemployed person study. about addressing barriers and how to support someone with HFA. The work psychologist has 4.3.5 Advocacy been involved with five or six people with HFA As people with HFA have difficulties in over the last few years. The number of people communication and in articulating their needs, with HFA that there are likely to be in Enfield access to advocacy services is essential. Generic compared with the low number in terms of advocacy services are provided within the caseload mentioned above, would suggest that services provided by Enfield Disability Action. access to supported employment (and other EDA provides resources for disability groups, employment based help) is difficult. promotes awareness, enables input into planning and consultation mechanisms and manages 4.3.4 Supported Further and Higher several disability projects including UDirect and Education EAPP. People with HFA can benefit from further education, university, college and vocational U Direct for example have support staff to assist courses and indeed any leisure activities or short people using individual budgets and direct courses that reduce isolation. However evidence payments. EAPP (Enfield Advice Plus Partnership suggests that people with HFA find it difficult to Project) co-ordinates a network of more than 50 cope with some aspects such as dealing with the organisations across Enfield that specialise in physical and social environments as well as time providing a wide range of services which include: management. welfare benefits advice, advice on housing, debt management, community care. The numbers of people with AS in further and higher education is not recorded. Those going However it must be born in mind that traditional to University are eligible for a Student Disability models may not work well, unless these services Allowance, though national data suggests only can adapt, respond and accommodate to the about half receive one. communication and sensory difficulties people with HFA have.
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 17 4.3.6 Housing 4.3.8 Mental Health Intervention Based on national studies, it is thought that at It has been well established that around 30% of least 40% of people with HFA are living with their people with HFA are likely to experience higher parents. When linked with the findings that 60% than normal levels of mental health problems of parents, carers or siblings do not consider the including depression, anxiety, and obsessional person with HFA they are caring for could live behaviour over their lifetime. This may be an independently, this indicates a need for future underestimate as due to their isolation and supported housing. It has not been possible to impaired communication, mental health problems get accurate figures for the number of people in may be less likely to be picked up in this supported housing in Enfield. Someone with HFA population. Access to psychological therapies, in is not a specific category or priority for eligibility particular CBT, has been shown to be affective. when assessing housing need for example. Currently there appears to be no defined access for appropriately adapted psychological therapies There are people living independently in in Enfield. accommodation, which they may own, or be rented from a private or social landlord. Research suggests that people with HFA have However they may run into problems through higher rates of suicide due to their higher rates of communication difficulties, sensitivity to noise depression and so it is crucial that preventative for example or caring for themselves. Without services are accessible to this group. advocacy and support it could lead to a breakdown in the tenancy. 4.3.9 Family/Carer support Enfield Carers Centre offers support and advice Practical support and training for areas such as to unpaid family carers in Enfield. It offers cooking, cleaning, paying bills and managing social activities, advice and information and a money have been shown as a high need for this counselling service. It is currently exploring the group. This is probably currently largely provided possibility of setting up a carers group for carers by families at the moment. of people with HFA. However there are a number of organisations within Enfield which offer floating support to those 4.3.10 Transition living independently or support within supported The transition service provided by the local living schemes. authority is located within the Integrated Learning Disability Service (ILDS), but covers 4.3.7 Social integration all young people with a disability or those who People with HFA experience high levels of social have additional needs. For most young people isolation and exclusion. The communication in transition an assessment of their needs impairments result in difficulties in developing will have been completed before the young friendships and networks is always likely to be person reaches the age of 18 in a ‘Moving On’ difficult. assessment. It is completed jointly by children’s and adult services to find out what the young There is no club or group within Enfield person’s aspirations for the future are, as well as specifically for people with HFA. There is an their support needs. The Transitional Operation Aspergers Club running in Barnet which is too far Group (TOG) co-ordinates the process, and has for one resident known to services within Enfield representatives from the relevant children and but might be accessible for others. adult services in order to ensure as smooth a transition as possible. The transitions service do The Ruth Winston Centre runs a range of report it does have some difficulty in obtaining activities. It has a few people with HFA attending, MH involvement in the process. CMS have but they report that is difficult to engage agreed to provide assessments in some cases, them and would welcome ideas on how to although the staff did not consider they had the provide better support. They note however, relevant expertise. that the people with HFA, although they seem disengaged, keep on coming.
18 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 However most people with HFA, unless they Services provided by the Community and have severe autistic traits or a co-morbid mental Voluntary Sector, which may include people health problem, will not be eligible for adult care with HFA, are grant funded or, increasingly, services under FAC once they reach the age of commissioned. 18. The only services they will have access to are mainstream services, which may not have the expertise and training to meet their specific 4.5 Current Funding needs. There is no comprehensive local data on the current health and social care costs of services Connexions work with young people age 13- for those with HFA. It has been possible to 19 (and up to the age of 25 for young people obtain some information about the cost of the who have learning difficulties or disabilities) social care provision to the 43 people with HFA and provides advice, guidance and access to receiving a service from BEHMHT within the block personal development opportunities. Some contract. The costs range from £182 per week personal advisers work with young people in to 24-hour support packages costing £1,216 per schools and colleges, or with training providers. week. According to the information provided the Others are based in organisations such as the current total cost per year is £171,288 for the youth service, specialist young people centres social care element of their support. and Connexions Centres. Due to resource constraints Connexions generally can only It has also not been possible to cost the services provide intensive support to those with a provided by Enfield Council to the 76 adults with Statement of Educational needs. autism (including those with LD), including the cost of direct payments or individual budgets. Transitions staff report that most young people with HFA do not have such a statement. It is very We do know that 30% of people with HFA are difficult to get mainstream schools to provide likely to have MH problems. In Enfield this would the information to Transitions about the potential equal 275 people. According to NICE (2011)37 needs of this group of young people if they are 0.06% of people in the general population with a part of School Action or School Action Plus. mental health problem will access acute inpatient care. The NAO (2009) report identifies that if you When young people with HFA who were are on the autistic spectrum you are twice as accessing services via CAMHS reach the age of likely to access acute inpatient treatment resulting 17 years, 3 months, the CAMHS team holding in a prevalence rate of 0.12%. In Enfield this clinical responsibility will refer the patient to the equates to 33 people. adult CMHT. At the point of referral to adult mental health services the CAMHS team holding Based on the NAO (2009) report and taking clinical responsibility will arrange a CPA meeting inflation into account a conservative estimate of to be held when the patient reaches the age of the cost of providing such treatment is £87,998 17 years 6 months. When the patient reaches the per person per year, a cost totalling £2.9 million age of 17 years, 9 months, the final stage of the per year. A cost set to rise given that the numbers handover process will commence. This will entail of people with autism are also set to rise. joint working between CAMHS and adult CMHT clinicians, with responsibilities agreed at the CPA It must also be remembered that the only figures meeting held at the age of 17 years 6 months. mentioned here are those related to acute inpatient care. However, as stated in the NAO report and the NICE (2011) report, the cost of 4.4 Contracting arrangements acute inpatient care is actually less than the other Services provided by BEHMHT are within a block inevitable costs that are incurred as a result of contract. a mental health problem. It is worth noting here that time and time again the research states that Residential and nursing home placements and access to specialist autism services reduces the some funding for day opportunities are made risk of mental health problems and hence is a on a spot basis, with the price being negotiated cost-effective investment in the long-term. according to individual need.
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