2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism

2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism

2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Enfield Clinical Commissioning Group www.enfield.gov.uk www.enfieldccg.nhs.uk

2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Adult Social Care Commissioning Team Health, Housing and Adult Social Care April 2013

2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 1 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 Contents

2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism

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

2013-2018 Enfield Joint Commissioning Strategy for Adults with Autism

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 3 • 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 re- align existing resources to better respond to the needs of people with HFA. Executive Summary

4 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 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.

Section 1. Introduction

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.

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