Enfield Clinical Commissioning Group

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 that affects how a person communicates with, and relates to, other people. The severity and presentation of difficulties can vary significantly. This strategy meets the requirements of the Autism Act 2009 and associated statutory guidance. It sets out five key objectives: Increasing awareness and understanding of autism. Developing a clear and consistent pathway for diagnosis. Improving access for adults with autism to the services and support they need to live independently within the community. Enabling local partners to develop relevant services for adults with autism to meet identified needs and priorities. Helping adults with autism into work. It focuses on adults with High Functioning Autism (HFA) who have average or above average intelligence (IQ of 70 or above). This includes those with Asperger s Syndrome. This is because there are already services in Enfield for people who have autism and a learning disability. Whereas it is often assumed that those with HFA do not require services. In fact in reality their autism can be just as severe and disabling. With the exception of the small number with high needs, the majority of people with HFA are not eligible for mental health or learning disability services under the current interpretation of Fair Access to Care criteria. The majority will require low level preventive support at varying stages in their lives to maximise their independence and prevent mental health problems and the breakdown of existing family or carer support. The key needs of this group are around communication and social skills as well as practical help with daily tasks such as cooking, budgeting and navigating access to services. Without this support some are likely to end up requiring high cost intensive services in the future. About 50% of those with autism are considered to have HFA, with the remainder having varying degrees of learning disability. It is estimated that there are around 900 people with HFA in Enfield. The number of children and young people with a diagnosis of autism moving to adult services is expected to grow by 59% between 2011 and 2016 and the strategy offers an opportunity to co-ordinate and improve provision for this vulnerable group. The strategy has been informed by local and national research and best practice, and is built upon an analysis of current and future need. The development was led by the Enfield Adult Autism Steering Group. Local stakeholders, including users and carers have informed the development of the strategy. It sets out how Enfield Council, Health and a range of partners across the whole community will develop and improve services over the next 5 years within the context of severe financial constraints. It proposes the creation of an autism team to be the catalyst and focus for improving diagnosis and assessment as well as increasing awareness and developing good practice. The autism team would help to realign existing resources to better respond to the needs of people with HFA.

4 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Section 1. Introduction 1.1 Aim The draft strategy and the accompanying Implementation Plan sets out how Enfield Council and its partners intend to develop services from 2013-2018. This will begin to meet the aspirations within the Autism Act (2009) and the requirements of subsequent guidance. The Autism Act (2009) and national autism strategy sets out a vision that all adults with autism will be able to live fulfilling and rewarding lives within a society that understands and accepts them. 1 The draft strategy is set within the context of severe resource constraints, and no additional central government funding. This has inevitably resulted in modest developments and a focus on what can be done within existing resources. 1.2 The Scope of the Strategy The strategy focuses on adults (over 18) in Enfield who have Autism and who do not have a learning disability. The rationale for the scope of the strategy is that people with an Autistic Spectrum Condition who also have a learning disability are assessed for social care services through the learning disability service. A key issue that needs to be addressed is that young people with autism (some of whom have been supported in childhood) are finding themselves without any support when they reach 18 years unless they have another disability. This is either due to not being eligible for services based on the interpretation of eligibility criteria; or it is due to difficulty accessing services that they are eligible for but which do not adequately cater for the needs of people on the higher functioning end of the autistic spectrum. 1.3 Developing the Strategy The strategy has been informed by local and national research and best practice, and is built upon an analysis of current and future need. Local stakeholders, including users and carers have informed the development of the strategy. It has been overseen by the Autism Steering Group whose membership was revised in May 2012 to give it a more strategic focus. The Strategy has been built on the work originally undertaken by the Steering group and this helped to identify how services in Enfield can be developed. Further consultation will be carried out, and any feedback received will inform both the strategy and the Implementation Plan. 1.4 What is Autism? Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. The severity and presentation of difficulties can vary significantly and so an Autistic Spectrum is talked of. 2 The word spectrum is used because, while all people with autism share certain difficulties, their condition will affect them in different ways. There is still debate and confusion among clinicians and researchers over the causes, diagnosis and categories of autism. Autistic Spectrum Conditions (ASCs) are classified as developmental disabilities in the ICD- 10 diagnostic manual in the same class as, Intellectual Disabilities or Attention Deficit Hyperactivity Disorder, 3 complex lifelong conditions involving pervasive developmental disorder.

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 5 Diagnosis of the condition is based on behaviour. Clinicians have agreed that ASCs involve difficulty in three areas, known as the triad of impairments. 4 Difficulties with social communication: language acquisition delay, and difficulty understanding and using speech, writing, body language, mood, gesture, and personal space (e.g. language, gestures, facial expressions and tone of voice). Difficulties with social interaction: problems acquiring and using social skills which can result in isolation, difficulty processing emotional information, difficulty initiating social contact and adhering to social rules and thus difficulty sustaining relationships (e.g. recognising and understanding other people s feelings and managing their own). Difficulties with social imagination: being unable to correctly distinguish the real from imaginary, finding it difficult to be reflexive, to inhibit behaviour, and to exhibit repetitive behaviours and obsessional interests (e.g. problems in understanding and predicting other people s intentions and behaviour and imagining situations outside their own routine). The patterns of behaviour listed above are useful for diagnosing autism but they do not tell us why people with autism behave in the way they do. To understand autism properly we need to think about some of the underlying difficulties people with autism have which may explain the behaviours they display. The majority of people who do not have autism are multi-tracked/multi-attentive. This means that they can receive and process a variety of information from a number of senses at the same time. However, most people with an ASC tend to be (to a greater or lesser extent) mono-tracked. If you can only process one bit of information at a time it means that the speed at which you 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. Furthermore, it is common for people with autism to have unusually high or low sensitivity in one or more of their senses. Frequently hypersensitivity results in extreme distress and pain. It is easy to see how these two factors result in the behaviours listed above. As a result people with autism often engage in obsessive, compulsive and/or, ritualistic behaviours as a way of coping. Naturally engagement in these behaviours can result in a range of challenges for those people (and organisations) supporting people with autism. The severity and presentation of difficulties can vary significantly and so an Autistic Spectrum is talked of. 5 The word spectrum is used because, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively unsupported lives and others need a lifetime of specialist support. While some people with autism may not speak, or will have limited language skills, others have good language skills but have difficulty understanding. Asperger Syndrome is a form of autism. People with Asperger Syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language. Diagnostic criteria are revised periodically, taking into account the most up-to-date research. One of the proposed changes to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), to be published in May 2013, would eliminate Asperger syndrome as a separate diagnosis, and fold it under autistic disorder (autism spectrum disorder), which would be rated on a severity scale. This is helpful as it will streamline diagnostic criteria. However, the minimum criteria for level 1 severity Needs Support are considerably higher than the minimum criteria for diagnosis. This may result in making it even harder for people with autism to access the support they need.

6 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 1.5 Terminology The literature uses a range of terms to describe adults with autism. This report will use adults with autism, adults with an ASC (Autistic Spectrum Condition) or ASD (Autistic Spectrum Disorder). HFA Higher Functioning Autism will be used to describe people with an IQ of 70 or above. This will include those with Asperger s Syndrome (AS) although in the literature this is sometimes a separate category. A glossary of abbreviations and terms used is set out in Appendix 10. 1.6 Vision for Services Both the Human Rights Act (1998) and The Equality Act (2010) enshrine the right for every person, regardless of disability, race, gender or culture to be entitled to such things as housing, education, health care and freedom from discrimination among other things. The Autism Bill (2009) and subsequent strategy Fulfilling and rewarding lives, the strategy for adults with autism 6 outlined the following vision for adults with autism: 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. The strategy identifies the following as being key to people with autism experiencing good outcomes: The right to receive an assessment of need from social services. To get the same opportunities for education and further education as everyone else. To be supported to get a job and stay in work. To be able to choose where to live just like anyone else. To have relationships and social networks. To have their health needs properly met in a way which is appropriate for someone with autism. To be safe from hate crime and discrimination. To live in a society where people understand, respect and accommodate difference. To receive support to live independently, as appropriate. 7 The research, both nationally and locally, indicates that currently people with autism tend not to achieve good outcomes. The vision for services in Enfield is to ensure that the rights of people with autism are upheld, that the appropriate services are delivered and that people with autism start to achieve their desired outcomes.

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 National context in terms of policy and national guidance for services for adults on the autistic spectrum. It then provides a summary of the local context including how other local strategies impact on the provision of services for adults with autism in Enfield. Finally, research and best practice are discussed. 2.1 National Guidance and Policy Context The Autism Act became law in November 2009 and was the first ever condition-specific piece of legislation in England and Wales. In response to the Act becoming law the Department of Health published a National Strategy for Adults with Autism. 8 The strategy sets out 5 key objectives: Increasing awareness and understanding of autism. Developing a clear and consistent pathway for diagnosis of autism. Improving access for adults with autism to the services and support they need to live independently within the community. Enabling local partners to develop relevant services for adults with autism to meet identified needs and priorities. Helping adults with autism into work. In June 2012 NICE set out detailed guidelines for the recognition, referral diagnosis and management of adults on the autistic spectrum. 9 This guidance recommends that each area should establish a specialist community-based multidisciplinary team for adults with autism to have a key role in the delivery and co-ordination of: Specialist diagnostic and assessment services. Specialist care and interventions. Advice and training to other health and social care professionals on the diagnosis, assessment, care and interventions for adults with autism (as not all may be in the care of a specialist team). Support in accessing, and maintaining contact with, housing, educational and employment services. Support to families, partners and carers where appropriate. Care and interventions for adults with autism living in specialist residential accommodation. Training, support and consultation for staff who care for adults with autism in residential and community settings. The autism strategy should be seen as sitting alongside wider policy direction started by the previous government and broadly continued by the current government in 2010 as reflected in: Liberating the NHS: Equity and Excellence which became enshrined in the Health and Social Care Act (2012) The Localism Act (2011) 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 policy documents are: Localism and partnership Involving devolution of power and empowering communities to have more say in how services are delivered locally. There is also encouragement for public sector staff to form social enterprises or employee led mutuals. Clinical Commissioning Groups will be given more freedom and accountability to commission care for their local communities, and this perhaps represents an opportunity to get autism services on the agenda. There is also an emphasis on a greater integration of health and social care and the need to work in partnership with a range of stakeholders including the VCS. Focus on outcomes Paying more attention to the impact of a service or intervention and its results has been a central theme for the commissioning and provision of services for a number of years, at strategic, operational and individual levels. Personalisation This is at the centre of the vision to transform adult care and respond to the needs of individuals by giving more choice and control to the consumers of services. Unless adults with autism are eligible for services and can access advocacy and brokerage services, then the whole area of direct payments and personal and individual budgets will have little meaning. More details of the National context are set out in Appendix 1. 2.2 Local Context The strategy should be consistent with the seven key joint commissioning aims Enfield has agreed in response to the White Paper Our health, our care, our say: a new direction for community services : Increase the choice and control in decision making over their individual services for service users, patients and carers across the Council and NHS Enfield. Increase the individual and collective influence of service users, patients and carers on shaping future services across the Council and NHS Enfield. To focus services to maximise and maintain people s health, independence and inclusion. To develop and maintain accessible services, including fully accessible premises and homes. To develop integrated community pathways and services by working in partnership and co-coordinating development and investment. To recruit and retain a workforce that is trained, reliable and efficient across the Council and NHS Enfield and to work with the Independent and Voluntary and Community Sectors to ensure that the same is true for their workforce. To focus on the quality of service provided to service users, carers and patients. One of the key objectives of the Enfield Joint Strategic Needs Analysis (JSNA) is to narrow the gap around health inequalities including life expectancy. 10 Autism is one of the four longterm conditions identified as a priority, along with dementia, learning and physical disabilities. Mental health remains a key priority for Enfield and the JSNA states that there is a widely held belief amongst professionals that there are poor health outcomes for people with mild/moderate mental illness, young people in transition from Child and Adolescent Mental Health Services (CAMHS) and for people of some black and minority ethnic groups. Autism is not specifically mentioned but forms part of the groups mentioned above. Although the Carer s Strategy 11, the Housing Strategy 12 and the Supporting People Strategy 13 do not specifically mention the needs of adults with autism and their carers, this could be addressed in any revision or refreshing of these strategies. Adults with autism should also be considered when the Joint Health and Wellbeing Strategy is drawn up. The current development of the Voluntary and Community Sector Strategic Commissioning Framework offers a good opportunity to address some of the needs of those with HFA within generic services particularly around Information, Advice and Guidance; Advocacy and Support; Prevention Services; and Direct Payments Brokerage.

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 9 The Council, PCT and CCG (Clinical Commissioning Group) have all agreed that the development of adult autism services is a shared priority. 2.3 Research and Best Practice The National Autism Strategy (2010) identified that outcomes for adults with autism could be improved in five main ways: Increasing awareness and understanding of autism. Developing a clear and consistent pathway for diagnosis of autism. Improving access for adults with autism to the services and support they need to live independently within the community. Enabling local partners to develop relevant services for adults with autism to meet identified needs and priorities. Helping adults with autism into work. There is considerable evidence to support good practice in each of these areas. Some of the key findings that have informed the development of this strategy are summarised below. 2.3.1 Increasing awareness and understanding of autism There is a need to develop the understanding and competency of community professionals working in a range of agencies so that they can respond appropriately to the needs of people with autism (SCIE, 2011). 14 It is essential that good quality training is available to relevant community professionals and that this is ongoing and sustainable. Wherever possible, the training should be accredited by an independent third party or 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. Be delivered in detail for those conducting assessments, those working directly with people with autism and the managers of these people. 17 Alter behaviour and practice among key professionals it isn t enough to attend training but then carry on as before. Include input from people with autism and their families. Cover awareness raising about Asperger s Syndrome and high-functioning autism the lack of support offered to people with autism of these types means that staff may have less awareness and experience here, so more needs to be done to redress the balance. 18 2.3.2 Developing a clear and consistent pathway for diagnosis Childhood prevalence studies suggest autism occurs in approximately 1% of the population, and that for every two known cases, there are three undiagnosed cases that might need a diagnosis at some point in their lives. 19 Processes should be in place for access to a multidisciplinary diagnostic assessment. There should also be appropriate post diagnostic support to the individual and carers including an offer of a community care and carer s assessment. 20 NICE clinical guidelines on recognition, referral and diagnosis recommends that specialist autism teams should be established in every area. 21 Statutory guidance states a lead professional should be appointed to develop diagnostic and assessment services. 22 Clear, consistent diagnostic pathways result in cost savings. 23

10 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 2.3.3 Improving access for adults with autism to the services and support they need to live independently within the community Research by the National Autistic Society suggests that nearly two thirds of adults with autism do not have enough support to meet their needs, and one in three adults with autism are experiencing severe mental health difficulties due to lack of support. 24 Current housing is likely to require adaptation to meet the needs of people with autism. For example, homes for people with autism often require consideration of sensory sensitivity to certain sounds, lights, colours and smells. 25 The characteristics associated with an ASC, such as impairments in social interaction, social imagination and social communication mean developing friendships and social networks can be extremely difficult. However, issues of loneliness and isolation can be overcome with appropriate social skills training and support. Improvement in social inclusion for adults with autism will only be achieved if policies are successfully implemented and society makes reasonable adjustments. 26 Advocacy is a vital need for people with autism to access services. 27 People with autism are vulnerable due to their social and communication difficulties, so they have a particular need for understanding and appropriate support from the criminal justice system. 28 Further Education colleges should be working towards providing effective provision for all young people. A successful and cost effective 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 2.3.4 Enabling local partners to develop relevant services for adults with autism to meet identified needs and priorities The adult autism strategy recommends setting up a local autism partnership board or a similar mechanism that brings together different organisations, services and stakeholders locally and sets a clear direction for improved services. 30 It is well documented that there is a lack of clarity over whose responsibility it is to provide support for adults with autism. More effective joint working between health and social care is critical to improving outcomes at a local level. It is therefore essential an integrated planning forum that is responsible for developing autism provision across health and social care is developed. Such forums do not require additional funding to set up and they are a key mechanism to addressing the need for a more collaborative approach to public service where agencies join up resources, both financial and human, to provide a more coherent response to local needs. 31 2.3.5 Helping adults with autism into work Only 15% of adults with autism are in paid employment compared to 48% of people with general disabilities. A much greater number of people with autism want to work and could do so if able to access appropriate support. Autism-specialist supported employment schemes result in significantly higher rates of employment, as well as employer and employee satisfaction. 32 Further information about research and best practice is provided in Appendix 2.

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 11 Section 3. Current and Future Demand This section summarises the needs analysis (further information can be found in Appendix 3). It outlines the methodology that has been used in Enfield and summarises the findings. Research and information about prevalence rates is used to make population projections currently and going forward. Information about how many people with autism are currently known to services in Enfield is also described and finally details are outlined about what people with autism and their families say their needs are. 3.1 Population Projections and Prevalence Rates 3.1.1 What methodology have we used in Enfield? In Enfield we have applied national prevalence rates to local demographic information. Population growth figures have been used to estimate future prevalence and information has been collected from SEN statements and from the recent London Council s and MIME Consulting Forecasting Project on children and young people with autism moving on to become adults over the next few years. 33 3.1.2 Summary of prevalence estimates 1% of adults (and children) have autism resulting in an estimate of 1,831 adults 18-64 in Enfield in 2011. The number of people aged 18-64 predicted to have autistic spectrum disorders is predicted to increase from 1,831 in 2011 to 1,956 in 2030. There is also a marked increase (40%) in the number of older adults aged 55-64 rising from 276 in 2011 to 388 in 2030. 34 This is in line with growth in the population aged 65 and over. Assuming a 1% prevalence rate, the numbers aged 65 and over predicted to have autism would rise from 388 in 2011 to 538 in 2030. Of these 50% have LD and 50% have HFA (IQ of 70 or above). 20-33% of adults with LD have autism. 60% of men with profound learning disabilities and 43% of women with profound learning disabilities have autism (The more profound the LD, the more likely they are to have autism if assessed.). Of the 50% with HFA, 30% are likely to experience MH difficulties. Based on an estimated prevalence of HFA (ASC and IQ 70) of 50% of all adults 18-64 with autism, and the reported rate of 30% experiencing a mental health problem, we might expect at least 275 adults with an ASC 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 than women (although recent research suggests that the rate in women may be underestimated). For the Enfield population as at April 2010, the Pupil Level Annual School Census 2010 (PLASC) shows that out of the entire school population in Enfield there were 443 (0.9%) pupils aged 0-19, identified as autistic via a Statement of Special Educational Needs or School Action Plus. This figure is clearly similar to the 1% prevalence rate identified in adults. The number of children and young people with a diagnosis of autism moving to adult services is expected to grow by 59% between 2011 and 2015/16. In 2010/11 there were 170 children aged 11-15 with a diagnosis of autism. 3.2 Number of people with autism known to services The Enfield council database indicates that 73 adults with autism were known to the local authority and receiving services. Of these five (6.5%) were in either full or part time employment; 60 (80%) were living in their own home or with their family and 15 (20%) were living in nursing home or residential care. A further 22 had not received services in the current year but were on the database. Of this total of 95, 19 were those with HFA. 11 of whom were receiving services. BEHMHT have records indicating that they are currently providing services to 43 adults with HFA, the vast majority of whom (37 or 85%) have a primary diagnosis of Asperger s Syndrome (AS). The remaining six have other diagnoses including atypical autism and other pervasive developmental disorders. Of the 43, 17 (40%) have a single, primary diagnosis of AS. The other 26 (60%) have a range of secondary diagnoses including paranoid schizophrenia (11) with the remainder a mix of anxiety, personality, behavioural and psychotic disorders. It is also worth noting that the total number of adults known to BEHMHT and Adult Social Care with HFA is 62 out of a predicted 915 living in Enfield. This represents a discovery rate of 7%. Liverpool for example has a rate of 14%. 3.3 Consultation with adults with autism and their carers 3.3.1 What methodology have we used in Enfield? In 2009 and 2010 the Autism Steering Group organised a number of events that were jointly facilitated with the National Autistic Society (NAS). These included three consultation workshops with adults with autism and their carers (separately). There were also a small number of 1:1 interviews of adults with autism as well some staff who supported individuals in a paid capacity. Staff involved in providing community services that might involve adults with autism were also interviewed (e.g. Community Access Librarian, Jobcentre Plus, Community Mental Health Team, Disability Support Officer Middlesex University). They were asked a number of questions including what reasonable adjustments their service had made to accommodate the needs of adults with autism and what issues there were. Discussions with members of the ASG and the NAS suggest that there is no reason to think that things have changed significantly since then or that the needs of adults with autism will be substantially different from the needs that have been identified regionally or nationally. 3.3.2 Summary of what adults with autism and their carers say they need The information from the consultation activities (which involved approximately 50 participants) found that adults with autism said that their biggest priority was having interventions which enabled them to be independent as well as helping them to develop self-management strategies. They wanted this to be followed by low-level continued support to maintain wellbeing. It was felt that facilitative support was required to help them gain life skills such as managing their finances, moving into employment, developing friendships, relationships and social networks, cooking, shopping, etc. All those interviewed, emphasised the need to access support intermittently to prevent escalation to crisis situations. There was also perceived to be a huge gap in psychological services available to those with HFA. However, it is worthy of noting that the Improved Access to Psychological Therapies (IAPT) project in Enfield was little known about. The information gained from the consultation 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 of people with autism living in Enfield? The number of people with autism living in Enfield will increase in the next 15 years. This is particularly striking in the case of children and young people moving into adulthood over the next few years with a diagnosis of autism. Maintaining contact with this group and their carers following transition into adulthood would significantly increase the numbers known to adult services and enable better planning for current and future needs for this population. From all the national and local information it is clear that the local HFA population will have a range of needs split into three broad groups: Those with high needs and are generally able to access services at present. Those with low needs who require preventive services from time to time and are currently not receiving services. Those with no need for services. The support needs and potential service responses of these three groups are illustrated in the table below. We do not know how many more people with HFA and their carers in Enfield will come forward as a result of greater publicity and promotion about clearer diagnostic pathways, assessments and easier access to a range of services. We therefore can only estimate the demand for diagnostic assessments, post diagnostic support. The NAO report (2009) 35 advises that such specialist services should aim to engage 8% of the local HFA population at any one time, half of which are likely to need support services. For Enfield this would represent a target of approximately 37 service users at any one time. We know from other local authorities, that where an infrastructure is put in place to meet some of the needs outlined, the demand for a range of services will increase. Clearly this might need managing and prioritising, but the NAO report does provide some evidence that adopting an early intervention and preventive approach to potential escalation and crisis will be cost neutral over time. Table 1: Support Needs and Potential Service Responses HIGH NEEDS Severe and enduring mental health problem Risk of suicide Offenders Severe autistic traits/challenging behaviour Physical disability or frailty LOW NEEDS Unaware they have HFA and why they have a range of social and other issues Little understanding of the disorder and how to manage it Little or no knowledge of services or potential help available Isolated lifestyle and few or no friends Unable to cook, shop, travel independently, budget or maintain personal hygiene Difficulty dealing with bureaucracy, completing forms, claiming benefits Difficulty finding work or not working Difficulty keeping a job Dependent on family/living with family NO CURRENT NEED No problems with daily living tasks Living independently or in a stable relationship In Employment Secondary and tertiary mental health services Forensic MH services Adult Care Management Services Diagnostic assessment Post diagnostic support and information Social Skills Training Information and advice on how to live with the disorder Practical support with correspondence, forms, benefits etc Practical support with everyday tasks Improved awareness and access to mainstream services Cognitive Behavioural Therapy Social Clubs/Activities No services required 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 undertaken to provide a picture of existing local services within Enfield. It also refers to some services outside the Borough as specific services for those with HFA are very few. 4.1 Map of services An overview of services that are available in Enfield and surrounding areas is attached as Appendix 4. There are very few specific services for people with HFA, so details are also given where mainstream services make recognition of the needs of people with HFA and have made some reasonable adjustment in how their services are promoted and delivered. It is not a comprehensive list and it is one that is evolving as mainstream services and those within the Community and Voluntary sector address how they can adapt some of their services to make them accessible and relevant to those with HFA. A questionnaire was recently sent to the Community and Voluntary Sector, including Supporting People and Floating Support providers asking them about how many people they had provided services to with autism, and how many of these were with HFA. Of the 17 responses 8 had provided services to a total of 42 people with HFA, or suspected HFA in the past year. Responses to a question about gaps in services included: Minimal formal diagnosis (and difficulty in getting a diagnosis) prevented access to some additional support services. College Courses or skills development courses specifically for those with HFA. An Asperger Group for service users the one running in Barnet was too far. More knowledge about the needs of those with HFA so that a Centre could engage them more. A continuing theme throughout the development of the strategy, and no different from the national picture, has been that responding to the health and social care needs of adults with HFA often falls between LD and MH services. BEHMHT are not currently commissioned to provide treatment for adults with neurodevelopmental disorders including ADHD or Autistic Spectrum Disorders where there is no associated co-morbidity. Currently they do provide some services to people with HFA with a primary diagnosis of Aspergers, with a recent list indicating 43 people with Aspergers, of which 17 have a primary diagnosis of Aspergers and no secondary diagnosis. The Trust have stated that they will be forwarding new referrals they receive, including those from GP s, to the relevant commissioners. The commissioners need to clarify what they consider should and could be provided under the existing block contract. 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 The numbers of adults known to be receiving services is set out in the needs analysis in Appendix 3. The services provided to the 11 adults with HFA through the local authority are: 1 Residential Care Placement 1 Adult Placement 3 Day care with 1 also receiving personal care and Direct Payments 3 Professional Support 3 Additional Support in supported tenancies (1 also receiving Direct Payments). The services provided to 43 adults via BEHMHT are provided through a variety of teams and settings including: 15 (35%) through the Severe and Complex Non-Psychotic service line by the Enfield Complex Needs Team and by dual diagnosis network; 10 (23%) through Psychosis service line by the Enfield Community Rehab Team, S&R Team and the Wellbeing Team; 8 (19%) through Common Mental Health Problems by the West Enfield Primary MH Team and Enfield PC Psychological Therapy Service; 5 through Forensic by Inpatients and Outreach; 4 (9%) through Crisis and Emergency by in patient and day care; 1 (2%) through Dietetics (eating disorders). The Council is intending to commission a range of generic services in the areas of Information, Advice and Guidance; Advocacy and Support. (Advice, guidance and advocacy may be particularly required when the welfare benefit changes are introduced from April 2013). This should include support to live independently, with carers or within supported housing provision covering areas such as general social skills, budgeting, welfare rights, communication and relationships. Service provision should be in line with the draft VCS Commissioning Framework where one of the priorities is To strengthen the availability of targeted services which support prevention and early intervention that aim to keep people well and living independently in the community, reducing the need for statutory services. 36 This could include helping adults with autism find meaningful work and day opportunities. The current main services provided within the Private and Voluntary sector which focus wholly or to a significant extent on those with HFA include: Specialist employment services provided by Prospects (run by NAS). Day opportunities, outreach, supported living and floating support by Marcus and Marcus, Outward Supported Living Services (Carterharch), One Housing Group, St. John of God Hospitalier Services, Person-centred Day Opportunities, and Roseneath (recently opened and part of Priory Group). Residential services provided by Robinia Care. 4.3 Service Quality The consultation with carers or other stakeholders has revealed that the issue is a lack of services rather than dissatisfaction with those that are provided for those with HFA. The following analysis discusses the degree to which various service areas are lacking. The analysis is based on interviews with people with autism, their families, staff from provider organisations, the LA and BEHMHT. 4.3.1 Identification and diagnosis 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 Currently people with HFA do not have a clear route to a FAC assessment. There are no specialist services providing assessments of their care needs. Generic assessments, particularly if there is an accompanying physical disability will be provided by Care Management Services. The Primary Mental Health Care Team will undertake an assessment where someone also appears to have a mental health need or perhaps their autistic traits are considered severe. For those receiving a FAC assessment there is some anecdotal evidence locally, backed up by experience nationally that without assessors skilled in the needs of those with HFA, assessments are likely to result in a person being assessed as being more able than they are due to the often hidden and unexpressed difficulties experienced by this group. 4.3.3 Supported Employment IDEA covering the Enfield area specialises on those with autism and includes a caseload of about eight of those with HFA. A work psychologist is also available to advise staff and employers and potentially the unemployed person about addressing barriers and how to support someone with HFA. The work psychologist has been involved with five or six people with HFA over the last few years. The number of people with HFA that there are likely to be in Enfield compared with the low number in terms of caseload mentioned above, would suggest that access to supported employment (and other employment based help) is difficult. 4.3.4 Supported Further and Higher Education People with HFA can benefit from further education, university, college and vocational courses and indeed any leisure activities or short courses that reduce isolation. However evidence suggests that people with HFA find it difficult to cope with some aspects such as dealing with the physical and social environments as well as time management. The numbers of people with AS in further and higher education is not recorded. Those going to University are eligible for a Student Disability Allowance, though national data suggests only about half receive one. Potential students are likely therefore to need advice and help in obtaining it. Southgate and Barnet College has specific courses for young learners who are not yet ready for mainstream courses aimed at developing their independence, life and work skills. SC also has a department devoted to serving college students with disabilities in mainstream courses. It is understood that it is planning to develop a local mini-college specifically for people with autism. The College of Haringey, Enfield and North East London (CONEL) is a vocational further education college, run by Ambitious about Autism. It aims to provide education and training to their students, irrespective of past achievements. CONE are developing provision from April 2013 on their Enfield campus working with Tree House School, in Muswell Hill which is also run by Ambitious about Autism. Capel Manor College is London s only specialist horticultural centre that offers full and part-time courses leading to national qualifications which support progression to employment or further study. 4.3.5 Advocacy As people with HFA have difficulties in communication and in articulating their needs, access to advocacy services is essential. Generic advocacy services are provided within the services provided by Enfield Disability Action. EDA provides resources for disability groups, promotes awareness, enables input into planning and consultation mechanisms and manages several disability projects including UDirect and EAPP. U Direct for example have support staff to assist people using individual budgets and direct payments. EAPP (Enfield Advice Plus Partnership Project) co-ordinates a network of more than 50 organisations across Enfield that specialise in providing a wide range of services which include: welfare benefits advice, advice on housing, debt management, community care. However it must be born in mind that traditional models may not work well, unless these services can adapt, respond and accommodate to the communication and sensory difficulties people with HFA have.

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 17 4.3.6 Housing Based on national studies, it is thought that at least 40% of people with HFA are living with their parents. When linked with the findings that 60% of parents, carers or siblings do not consider the person with HFA they are caring for could live independently, this indicates a need for future supported housing. It has not been possible to get accurate figures for the number of people in supported housing in Enfield. Someone with HFA is not a specific category or priority for eligibility when assessing housing need for example. There are people living independently in accommodation, which they may own, or be rented from a private or social landlord. However they may run into problems through communication difficulties, sensitivity to noise for example or caring for themselves. Without advocacy and support it could lead to a breakdown in the tenancy. Practical support and training for areas such as cooking, cleaning, paying bills and managing money have been shown as a high need for this group. This is probably currently largely provided by families at the moment. However there are a number of organisations within Enfield which offer floating support to those living independently or support within supported living schemes. 4.3.7 Social integration People with HFA experience high levels of social isolation and exclusion. The communication impairments result in difficulties in developing friendships and networks is always likely to be difficult. There is no club or group within Enfield specifically for people with HFA. There is an Aspergers Club running in Barnet which is too far for one resident known to services within Enfield but might be accessible for others. The Ruth Winston Centre runs a range of activities. It has a few people with HFA attending, but they report that is difficult to engage them and would welcome ideas on how to provide better support. They note however, that the people with HFA, although they seem disengaged, keep on coming. 4.3.8 Mental Health Intervention It has been well established that around 30% of people with HFA are likely to experience higher than normal levels of mental health problems including depression, anxiety, and obsessional behaviour over their lifetime. This may be an underestimate as due to their isolation and impaired communication, mental health problems may be less likely to be picked up in this population. Access to psychological therapies, in particular CBT, has been shown to be affective. Currently there appears to be no defined access for appropriately adapted psychological therapies in Enfield. Research suggests that people with HFA have higher rates of suicide due to their higher rates of depression and so it is crucial that preventative services are accessible to this group. 4.3.9 Family/Carer support Enfield Carers Centre offers support and advice to unpaid family carers in Enfield. It offers social activities, advice and information and a counselling service. It is currently exploring the possibility of setting up a carers group for carers of people with HFA. 4.3.10 Transition The transition service provided by the local authority is located within the Integrated Learning Disability Service (ILDS), but covers all young people with a disability or those who have additional needs. For most young people in transition an assessment of their needs will have been completed before the young person reaches the age of 18 in a Moving On assessment. It is completed jointly by children s and adult services to find out what the young person s aspirations for the future are, as well as their support needs. The Transitional Operation Group (TOG) co-ordinates the process, and has representatives from the relevant children and adult services in order to ensure as smooth a transition as possible. The transitions service do report it does have some difficulty in obtaining MH involvement in the process. CMS have agreed to provide assessments in some cases, although the staff did not consider they had the relevant expertise.