Warrington Autism Strategy for Adults WARRINGTON. Borough Council Warrington Autism Strategy for Adults

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1 Warrington Autism Strategy for Adults Warrington Clinical Commissioning Group WARRINGTON Borough Council Warrington Autism Strategy for Adults

2 Contents Foreword by Cllr Pat Wright Introduction Warrington s Autism Strategy for Adults: The National Guidance What is autism? Warrington s Autism Strategy for Adults Our Strategic Goals Our Strategic Objectives How will we measure our success? Warrington s Joint Autism and Learning Disability Partnership Board Annual Review and Report Autism Self-Evaluation Appendix 1: Local Consultation and Research 2 Warrington Autism Strategy for Adults

3 Foreword I am pleased to present Warrington s Autism Strategy for Adults which has been developed jointly with NHS Warrington Clinical Commissioning Group. It builds upon work already underway and lays out the objectives we have set for ourselves and our partners as part of our commitment to improve the lives of people with autism, their carers and their families. Additionally, it details for all our partners and stakeholders, how we will take forward and deliver on the objectives of the recently refreshed National Autism Strategy, at a local level. Autism is sometimes described as a hidden disability, not only because it has no physical signs, but also because adults with autism are some of the most excluded and least visible people in the UK. Adults with autism can often be victims of inadequate healthcare services, social stigma and discrimination. Too many adults with autism are unemployed, struggling to get by on benefits and reliant on the care and support of their parents, both financially and for practical help. Housing is another key issue to be faced when those with autism strive to develop their independence. The main focus of the strategy is to ensure training for staff; to improve the identification, diagnosis and ongoing support of adults with autism; and to provide leadership for the development of services. This will build public and professional awareness, enable a change in attitudes, and reduce the isolation and exclusion that people with autism face too often. Through the Joint Learning Disability and Autism Partnership Board, we have involved professionals from Education, Children s services, people with autism and their carers and professionals who work with people with autism. I would like to take this opportunity to thank them all for their help, involvement and contributions both for developing the strategy and monitoring it going forward. Cllr Pat Wright Executive Board Member for Health and Wellbeing and Adult Services Warrington Autism Strategy for Adults

4 Introduction People with autism are an important part of our community in Warrington. This local strategy supports the Government s vision for transforming the lives of adults with autism and aims to make it a reality. } 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. } HM Government: Fulfilling and Rewarding Lives; the strategy for adults with autism in England (2010) Warrington s Autism Strategy: The National Guidance In 2009, the Autism Act outlined the Government s commitment to improve the lives of people with autism. The Act makes two significant pledges: 1. To develop a national strategy to improve the lives of adults with autism. 2. To provide statutory guidance for local authorities and local health commissioners on the needs of adults with autism. In 2010, the national strategy, Fulfilling and Rewarding Lives, was the first strategy for adults with autism. The strategy has five strands which formed the Core Areas of work. 1. Increasing awareness and understanding of autism among frontline professionals. 2. Developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment. 3. Improving access to the services and support which adults with autism need to l ive independently within the community. 4. Helping adults with autism into work. 5. Enabling local partners to plan and develop relevant services for adults with autism to meet identified needs and priorities. As promised by the 2010 Autism Act, the national statutory guidance followed later that year. It placed a duty on all local authorities to adopt a local strategy for adults with autism, which embraced the principles and Core Areas of the national strategy. Local authorities and the NHS have a duty to follow this guidance. 4 Warrington Autism Strategy for Adults

5 In 2013, the Government carried out a consultation to inform its scheduled refresh of the national strategy. The consultation took into account the views of adults with autism, their family members, carers and the professionals who work with them. Fifteen Priority Challenges for Action emerged which informed and strengthened an update to the national strategy, Think Autism; Fulfilling and Rewarding Lives. At a local level, five key priorities emerged from a Warrington-wide consultation. These now inform our local thinking and our local strategy (see Appendix 1). In 2014, the updated national strategy, Think Autism; Fulfilling and Rewarding Lives, made it clear that service commissioners and providers need to go further to ensure that adults with autism could enjoy fulfilling and rewarding lives within autism aware communities, serviced by organisations which really did Think Autism! What is autism? There are different terms used to describe autism, such as autistic spectrum disorder (ASD), autistic spectrum condition (ASC), autistic spectrum difference and neurodiversity. In this strategy, we will use the term autism for all autistic conditions, including Asperger s syndrome. } Autism is defined as a lifelong condition that affects how a person communicates with, and relates to, other people. It also affects how a person makes sense of the world around them. Department of Health, 2010 The Government identifies three main areas of difficulty, shared by all people with autism, which form the basis for diagnosis. They are referred to as the triad of impairments. Social interaction (e.g. problems in recognising and understanding other people s feelings and managing their own) Social imagination (e.g. problems in understanding and predicting other people s intentions and behaviour and imagining situations outside their own routine) Social communication (e.g. problems using and understanding verbal and nonverbal language, such as gestures, facial expressions and tone of voice) } Warrington Autism Strategy for Adults

6 Autism as a spectrum condition Autism is seen as a spectrum condition, which means that, 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 independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours. Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence (an IQ of 70 or above). They have fewer problems with speech but may still have difficulties with understanding and processing language. In 2011, The National Autistic Society estimated that 50% of those with autism may also have a learning disability. Many people with autism also have other conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Deficits in Attention and Motor Perception (DAMP), epilepsy, dyslexia and dyspraxia. Figure 1: Autism as a spectrum condition Autistic Spectrum Conditions High functioning autism, Asperger s or Pervasive Development Disorder Classic Autism Extreme ability in some areas Above average I.Q. Average I.Q. Mild learning disability Moderate learning disability Severe learning disability 6 Warrington Autism Strategy for Adults

7 Warrington s Autism Strategy for Adults Our Strategic Goals It is a national and local priority to: improve the ways in which we identify the needs of adults with autism, and incorporate those identified needs, more effectively, into local service planning and commissioning, so that adults with autism and their carers are better able to make relevant choices about their lives Our Strategic Objectives The Core Areas of the national strategy, Fulfilling and Rewarding Lives (2010) form the Strategic Objectives for Warrington s Autism Strategy for Adults ( ). 1. Increasing awareness and understanding of autism among frontline professionals. 2. Developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment. 3. Improving access to the services and support which adults with autism need to live independently within the community. 4. Helping adults with autism into work. 5. Enabling local partners to plan and develop relevant services for adults with autism to meet identified needs and priorities. Warrington Autism Strategy for Adults

8 Strategic Objective 1 Increasing awareness and understanding of autism among frontline professionals What do we want to improve? According to the 2010 strategy, Fulfilling and Rewarding Lives, while most professionals know something about autism, they do not necessarily understand how autism affects people. This makes it hard for them to recognise autism and communicate appropriately. It also means they may have little idea of how to adapt their behaviour and their services. Training is an important aspect to address this issue. The first and fundamental step is to increase awareness and understanding of autism across all public services. National Objectives Improve autism awareness training for all front line public service staff, in line with the needs of their job, and Develop specialist training for staff in health and social care. Special Considerations Involve adults with autism in developing and delivering training. Training must lead not only to improved knowledge and understanding but also to changing the behaviour and attitudes of health and social care staff. The Department of Health states that it is essential that autism awareness training is available to: Everyone working in health or social care; Staff carrying out community care assessments; Students undertaking social care core training; All staff in the criminal justice sector; All Jobcentre Plus Disability Employment Advisors, and That autism awareness should be part of the core training curricula for doctors, nurses and other clinicians. 8 Warrington Autism Strategy for Adults

9 Priority Challenges for Action (Think Autism, 2014) Priority 1: I want to be accepted as who I am within my local community. I want people and organisations in my community to have opportunities to raise their awareness and acceptance of autism. Priority 6: I want to be seen as me and for my gender, sexual orientation and race to be taken into account. Priority 9: I want staff in health and social care services to understand that I have autism and how this affects me. How will we make the improvements? 1.1 Develop autism awareness training for all social care and NHS professionals and develop an e-learning model which is widely available. 1.2 Develop specialist training for professional staff who deal more closely with people with autism. 1.3 Ensure advocacy services provided by the local authority have received autism training. 1.4 Continue to provide and promote autism training opportunities to those working in the criminal justice system. 1.5 Ensure employers and employment staff are autism aware. Warrington Autism Strategy for Adults

10 Strategic Objective 2 Developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment What do we want to improve? According to the 2010 strategy, Fulfilling and Rewarding Lives, For many adults, receiving a clinical diagnosis of autism is an important step towards a fulfilling life. It can not only help them and their families understand their behaviour and responses, but should also help with access to services and support, if they need them. National Objectives Increase capacity around diagnostics Ensure a diagnosis is recognised as a reason for a community care assessment, and Provide relevant information to adults with autism and their family or carers at the point of diagnosis to help them understand the condition and access local support Special Considerations National Institute for Health and Care Excellence (NICE) guidelines set out a model of care pathway for local commissioners to develop referral and care pathways A lead professional should be appointed to develop diagnostic and assessment services for adults with autism Priority Challenges for Action (Think Autism, 2014) Priority 7: I want a timely diagnosis from a trained professional. I want relevant information and support throughout the diagnostic process. How will we make the improvements? 2.1 The Autism and Learning Disability Partnership Board will continue to develop clear post-diagnosis pathways for adults with autism, including post-diagnosis support, signposting to appropriate services and providing information and advice. 2.2 Improve data collection for people with autism within Children and Adult services and ensure a diagnosis of autism for any children going through transition is accurately recorded. 10 Warrington Autism Strategy for Adults

11 Strategic Objective 3 Improving access to the services and support which adults with autism need to live independently within the community What do we want to improve? According to the 2010 strategy, Fulfilling and Rewarding Lives, Equality of access is a fundamental principle of UK public services. But it is clear that, too often, adults with autism are not currently able to access the services or support they need. This strategy sets out to ensure that adults with autism are able to benefit fully from public services within Warrington. National Objectives Reiterate the Disability Discrimination Act requirement for services to make reasonable adjustments for adults with autism. Enable adults with autism to benefit from personalisation of social care. Improve transition planning to give people with autism the right start in their adult life. Priority Challenges for Action (Think Autism, 2014) Priority 3: I want to know how to connect with other people. I want to be able to find local autism peer groups, family groups and low level support. Priority 4: I want the everyday services that I come into contact with to know how to make reasonable adjustments to include me and accept me as I am. I want the staff who work in them to be aware and accepting of autism. Priority 5: I want to be safe in my community and free from risk of discrimination, hate crime and abuse. Priority 10: I want to know that my family can get help and support when they need it. Priority 12: I want people to recognise my autism and adapt the support they give me if I have additional needs such as a mental health problem, a learning disability or if I sometimes communicate through behaviours which others may find challenging. Warrington Autism Strategy for Adults

12 Priority 13: If I break the law, I want the criminal justice system to think about autism and to know how to work well with other services. Priority 14: I want the same opportunities as everyone else to enhance my skill, to be empowered by services and to be as independent as possible. How will we make the improvements? 3.1: Safeguarding people with autism As with all people within the community, people with autism have the right to live in safety and be free from hate crime, discrimination and abuse. It is the responsibility of the Warrington Safeguarding Adults Board to protect vulnerable adults from abuse. Safeguarding vulnerable people is the responsibility of all sectors, whether statutory or voluntary Work with Warrington s Safeguarding Adults Board to ensure that people with autism get support from a suitably trained advocate during safeguarding processes, if required Ensure that people with autism know how to use the Safe Places scheme if they wish. 3.2: Criminal Justice System When people with autism come into contact with the Criminal Justice System it is often up to them, or their carer, to explain what having autism means Continue to strengthen partnership working with the Criminal Justice System ensuring engagement and representation on the Joint Learning Disability and Autism Partnership Board Develop a clear pathway and support for people with autism who are in the Criminal Justice System. 3.3: Personalisation The majority of services for people with learning disabilities and autism are commissioned in a person centred way with good examples of creative and flexible support including the use of personal budgets Develop Individual Service Funds to enable those people who cannot currently hold a personal budget to have access to the personalisation agenda Ensure that people with autism, who are eligible for adult social care, have their social needs assessed and supported. 12 Warrington Autism Strategy for Adults

13 3.4: Access to Health Services Many adults with autism have become reluctant to see a GP or other health professional. This can lead to delays in diagnosis and treatment of health conditions. It is essential that health services respond appropriately to encourage people with autism to seek advice. A partnership approach has been developed across Warrington with the Clinical Commissioning Group (CCG), led by GPs and other clinicians to support the health needs of people with autism Ensure all health service staff are aware of their need to have knowledge and understanding of autism and are provided with opportunities to access learning resources Ensure the pathway from diagnosis to post diagnosis support is clear and communicated to people with autism, health professionals and health organisations. 3.5: Housing and accommodation The needs of adults with autism should be taken into account in local housing planning, design and allocation, in line with local priorities Support should be available for adults with autism who want to, or have to, live independently both on an ongoing basis and during the transition period to a new home Ensure that a range of housing and accommodation options are available to meet the broad needs of people with autism. 3.6: Transport Having good local transport, which is accessible, enables people with autism to develop their independence. This is particularly important in the evening, so that adults with autism can enjoy a full range of social and leisure activities in Warrington Improve provision of transport in the evenings to enable access to social and leisure facilities. 3.7: Social activities / friendships and relationships Having support through social involvement can help people with autism learn to cope with many everyday situations in the community as well as alleviating social isolation. People with autism find it particularly difficult to make friends. Support groups can help adults with autism to build relationships with friends, partners and work colleagues and support independent living Map social and support groups available across Warrington for people with autism and ensure information is available on the range of groups available. Warrington Autism Strategy for Adults

14 3.7.2 Support the development of autism awareness and understanding in organisations and staff who provide social and leisure activities Explore the potential for the development of local buddying and mentoring schemes, to enable people with autism to become more independent and confident Explore the use of assistive technology to help people with autism become more socially independent. 14 Warrington Autism Strategy for Adults

15 Strategic Objective 4 Helping adults with autism into work What do we want to improve? According to the 2010 strategy, Fulfilling and Rewarding Lives, The ability to get, and keep, a job and then to progress in work is the best route out of poverty, and a central part of social inclusion. Adults with autism are significantly underrepresented in the labour market and we are committed to doing more to help adults with autism into employment. National Objectives Ensure adults with autism benefit from wider employment initiatives Personalise welfare and engage employers Improve existing provision Develop new approaches that will better support adults with autism Priority Challenges for Action (Think Autism, 2014) Priority 15: I want support to get a job and support from my employer to help keep it. How will we make the improvements? 4.1 Provide autism awareness to employers and ensure proactive engagement with local employers specifically about employment of people with autism including retaining work. 4.2 Collate detailed information on the number of people with autism in employment within Warrington. 4.3 Ensure that Person Centred Plans include employment issues for people with autism and learning disabilities. This includes transition reviews and Person Centred planning in schools. 4.4 Ensure that the Supported Employment Service supports people with autism as well as those with a learning disability into employment, and continues to develop their staff s autism awareness. 4.5 Explore the options of voluntary work and work experience for people with autism. 4.6 Scope and engage in wider employment initiatives where available. Warrington Autism Strategy for Adults

16 Strategic Objective 5 Enable local partners to plan and develop relevant services for adults with autism to meet identified needs and priorities. What do we want to improve? According to the 2010 strategy, Fulfilling and Rewarding Lives, While central government can set the framework for improving the lives of adults with autism removing barriers, working to increase awareness much of the responsibility for delivery of this strategy sits locally. It is here that partners can come together to develop relevant services and extend existing ones that enable adults with autism to be included in society, reflecting the needs and priorities of the local area. National Objectives Put the needs of adults with autism on the map Identify and promote service models that are proven to make a positive difference for adults with autism Enable adults with autism and their families to have greater choice and control over where and how they live Priority Challenges for Action Priority 2: I want my views and aspirations to be taken into account when decisions are made in my local area. I want to know whether my local area is doing as well as others. Priority 8: I want autism to be included in local strategic needs assessments so that person centred local health, care and support services, based on good information about local needs, is available for people with autism. Priority 11: I want services and commissioners to understand how my autism affects me differently through my life. I want to be supported through big life changes such as transition from school, getting older or when a person close to me dies. 16 Warrington Autism Strategy for Adults

17 How will we make the improvements? 5.1 Create a systematic method for the data collection of people with autism across health and social care. Develop a data collection sharing policy inclusive of primary care, health provision and adult social care to ensure data sharing exists between services. 5.2 Update the Joint Strategic Needs Assessment (JSNA) chapter on autism to better understand local prevalence data and need. 5.3 Ensure there is clear council policy covering statutory and other public wide services and evidence of widespread implementation of reasonable adjustments being made to everyday services to improve access and support for people with autism. 5.4 Ensure that the needs and views of people with autism and their families are at the heart of planning and that they are embedded into the contractual arrangements of providers when adult services are being commissioned across health and social care. Warrington Autism Strategy for Adults

18 Monitoring this Strategy Warrington s Joint Learning Disability and Autism Partnership Board Responsibility for managing and reviewing this strategy rests with Warrington s Joint Learning Disability and Autism Partnership Board (the Partnership Board). The Partnership Board is made up of representatives from key statutory agencies, service providers, families and representatives of people with autism. It is directly accountable to Warrington s Health and Wellbeing Board, which is the strategic joint commissioning Board for health and social care. Although the Partnership Board has been developed to consider learning disabilities and autism separately, there are times when the same issues apply to both groups and having a joint Partnership Board enables crucial links to be made. In relation to the Autism agenda, the Partnership Board has the following duties: Overseeing the completion of the Autism Self-Evaluation and any action plans resulting from it Overseeing the development of Warrington s Autism Strategy for Adults, updates to the strategy and resulting action plans. Annual Review and Report Warrington s Autism Strategy for Adults will be reviewed no less than every twelve months. We will aim to circulate a report on our next steps to improvement alongside an evaluation of our achievements to coincide with Autism April each year. In addition, this strategy may be updated, from time to time, to accommodate other plans, guidance, strategies and statutory duties, as required. For example: during this review period, the strategy will be amended to draw on evidence from the Autism Joint Strategic Needs Assessment (JSNA) and Warrington s Market Position Statement for Adults of Working Age. In the longer term, it is anticipated this strategy will expand to include the needs of children and young people, so that consistency of approach to service delivery and planning is easier to manage through the transition to adult services, resulting in more favourable outcome for people with autism. Annual self-assessment Each local authority area is required by the Department of Health to complete an annual self-evaluation regarding their progress and approach to the autism agenda. The assessment is based on seven quality outcomes within Fulfilling and Rewarding Lives Adults with autism achieve better health outcomes. 2. Adults with autism are included and economically active. 3. Adults with autism are living in accommodation that meets their needs. 4. Adults with autism are benefiting from the personalisation agenda in health and social care, and can access personal budgets. 5. Adults with autism are no longer managed inappropriately in the criminal justice system. 6. Adults with autism, their families and carers are satisfied with local services. 7. Adults with autism are involved in service planning. Warrington Autism Strategy for Adults

19 APPENDIX 1: Local Consultation and Research In developing this strategy, local consultation exercises have taken place with stakeholders, including those with autism and their families, to explore what the local issues are. Questionnaires were developed, enabling people with autism and their friends/family to share their experiences of using services and to provide information on how services can be improved in the future within Warrington. Information obtained from the consultation has helped inform the development of this strategy. Although the response rate to the questionnaire was low, the results give some indication of potential needs within the Warrington area. Improving Independence: The majority of respondents (93%) do not live alone with 80% living with their parents. However, the majority of respondents felt that their accommodation met their needs. Harassment and hate crime: Half of the respondents said that they had been harassed or bullied since the age of 18 and 23% had been a victim of crime. Transition: Less than half (45%) of respondents stated that they had a transition plan and the majority of respondents reported that they did not receive any support during the transition process. Employment: The majority (58%) are not within employment, of those who are 60% worked part time. Receiving support: In gaining support form Warrington Borough Council, 45% of respondents reported problems in seeking support and 44% did not receive any support from the council. Following a consultation on the draft strategy, amendments were made based on the views of adults with autism, their family carers and advocates. In addition, the strategy has been endorsed by Warrington s Health and Wellbeing Partnership Board. Warrington Autism Strategy for Adults

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