North Somerset Autism Strategy Approved by: Ratification date: Review date: September 2017 1
Contents 1 Introduction and background... 3 2 Defining Autism...Error! Bookmark not defined. 3 National and local context... 3 National policies... 4 5 Our vision... 6 6 Strategic areas for development... 6 6a. Improving Autism awareness 6b. Recognition & diagnosis of Autism 6c. Improving access to services 6d. To support people with Autism into education, training and work 6e. Developing support for people with Autism 6f. Support for families and carers 6g Suitable housing & support for people with Autism 6h Transition from children services to adult service 2
1 Introduction and Background This Strategy has been put together by North Somerset s Strategy Group for Adults with Autistic Spectrum Conditions which is a multi-agency group chaired by North Somerset Council. The group operates with representation from health and social care commissioning, relevant health and social care services, and NAS. The Strategy sets out our strategic priorities in North Somerset and has been written in response to Fulfilling and Rewarding Lives: the strategy for adults with autism in England. It has been developed during a time of organisational change within statutory services and also at a time when health and social care services are under financial constraints. The outcomes identified within this Strategy will therefore have to be achieved using available resources, within the statutory agencies. 2 Defining Autism Autism is a lifelong disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is 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 also 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. They have fewer problems with speech but may still have difficulties with understanding and processing language. 3 National and local context Current estimates suggest that approximately 1.1% of the adult population or 450,000 nationally meet the criteria for a diagnosis of autism. The prevalence of autism is higher in men (2%) than women (0.3%).although many people believe that there is under diagnosis of females as maybe they have different coping strategies and their behaviour is not so extreme. The most recent epidemiological research states that the average reported prevalence of learning disabilities within the population of people with an autism spectrum condition is 52.5% (DH, 2010). This means that approximately 47.5% of the total number of people with ASC do not have a learning disability. According to the mid 2009 population estimates for all age groups the following prevalence is estimated: CCG Population Estimated number of people Estimated number of people Approximate proportion Estimated number of adults 3
North Somerset with autism with Asperger syndrome under 18 with Asperger syndrome 209,100 2, 091 753 153 600 4 National policies Building the right support (2015) provides a national plan to grow community services and close inpatient facilities for people with a learning disability and/or autism who exhibit behaviour that challenges, including those with a mental health condition. The overarching theme of the document is the notion of supporting individuals with a learning disability and/or autism to live in the community as opposed to a hospital setting. Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy (2015) provides guidance to local authorities and the NHS to support them to reach a shared vision for all adults with autism to live fulfilling and rewarding lives within a society that accepts and understands them. Think Autism Adult Autism Strategy (2014) places greater emphasis on involvement and awareness within the local community and on ways to look differently at support and engagement. Think Autism therefore builds on the 2010 Autism Strategy rather than replaces it and the two should be read together. NICE Clinical Guideline for Autistic Spectrum Conditions in Adults (2014) reviews the existing evidence base for the assessment, treatment and management of adults with autism, and makes a series of recommendations for how services should be delivered to this client group. The key recommendation relevant to this paper is that: in each area a specialist community-based multidisciplinary team for adults with autism (the specialist autism team) should be established to provide the following: - specialist diagnostic and assessment services - advice and training to other health and social care professionals on the diagnosis, assessment, care and interventions for adults with autism - 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 No health without mental health: a cross-government mental health outcomes strategy for people of all ages (February 2011). The overall aims of this strategy are to improve the mental health and wellbeing of the population to keep people well and improve outcomes for people with mental health problems, including addressing 4
the secondary mental health problems resulting from physical illness or disability through high-quality services that are equally accessible to all. The document especially highlights the need to meet some principles of high quality care including: - equal and timely access to appropriate services - single assessments to ensure continuity of care and adopting the ask once methodology - co-ordinated interventions planned around outcomes agreed by the user of the service Fulfilling & Rewarding Lives (DH, 2010) outlined the Government s vision for the transformation of mainstream health and social care services to ensure that the needs of adults with autism are met, and made a series of recommendations with regard to how this could be achieved. 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 to make the most of their talents. The national strategy highlights 5 core areas for development and action: - increasing awareness and understanding of autism across all public services - the development of clear consistent pathways for diagnosis in every area, which is followed by the offer of a personalised needs assessment by the local authority - improving access for adults with autism to mainstream public sector services and the support they need to live independently within the community - helping adults with autism into work - building capacity at a local level to enable partners to plan and develop relevant services for adults with autism to meet identified needs and priorities Implementing Fulfilling & Rewarding Lives (DH, 2010) - following the publication of the national autism strategy, the DH then issued statutory guidance for health and social care bodies. The purpose of this guidance is to secure the implementation of 'Fulfilling and Rewarding Lives: The strategy for adults with autism in England' by giving guidance to local authorities, NHS bodies and NHS Foundation Trusts around training of staff, the diagnosis of autism and the leadership and planning of services. The Autism Act (2009) placed a legal duty on statutory agencies (including PCTs, NHS Trusts and Local Authorities) to provide a range of services for adults with autism, and committed the Government to produce a national strategy setting out how this should be done. 5
5 Our vision Our aim is to deliver a strategy that produces valued outcomes for people with autism of all ages. Our goal is to achieve this by providing an integrated framework for assessment, intervention and support to improve access to diagnosis and onward services whilst also supporting families and carers. The Adult Autism strategy sets out the overarching vision that North Somerset will pursue in order to improve the lives of adults with autism, their families and carers. A separate action plan will provide further detail about the individual steps we will take to address the key issues in each area. 6 Strategic areas for development 6a Improving Autism awareness It is recognised that a number of local services provide support for people with autism. Work in our locality needs to continue to support their development however additional time needs to be spent promoting autism awareness to a wider group of people. Priorities for action Raise autism awareness Develop specialist expertise within teams Promote awareness in other services Introduce a programme of autism awareness training. Ensure that frontline health and social care staff can identify potential signs of autism; understand how to adapt their communication and behaviour; and know how to make reasonable adjustments. Identify an autism champion within each team who can guide the rest of the team on how to make reasonable adjustments and identify potential signs of autism. Hold an autism awareness raising event and invite all local teams to attend. 6b Recognition and diagnosis of Autism Over a number of years, the Department for Education and DH have worked together to encourage early identification of potential autism. Nevertheless, there is a significant group of adults who were not diagnosed as children principally because autism has not historically been well recognised. 6
Priorities for action Recognition Screening tools Referral pathway & onward care Joined up clinical work between children and adult services All front line practitioners need to be able to recognise potential signs of autism, including in people with a learning disability or a mental health condition, and know how to refer someone for assessment. This can be promoted through appropriate staff training and identification of Autism Champion within clinical teams. Continue to work with partners to ensure the development of an effective adult autism diagnosis pathway, from early intervention through to post diagnostic support as required through adult life. Care and Treatment reviews to be completed for all service users across the pathways to prevent unnecessary admissions and lengthy hospital stays. Identify clear pathway of working relationship between SPAR and BASS to help reduce waiting list times. 6c Improving access to services Diagnosis needs to be followed up with information, advice and guidance about autism, plus signposting to sources of help and support. Following diagnosis, adults will be entitled to an assessment by the local authority to establish whether they are eligible to receive services. The eligibility criteria are designed to ensure equity and consistency in the way that all local authorities allocate their resources across all groups of people in need. Priorities for action Information, advice and guidance Ensure all adults with autism are aware of the services available to them in North Somerset and how these can be accessed. Promote awareness amongst GPs on local services available to adults with autism. Review of local assessment tools Personalisation The Autism Forum will monitor the operation of local assessments to ensure they are not underestimating the needs of adults with autism. Promote awareness amongst service users on the use of having a managed personal budget to purchase their choice of help and support services. 7
6d To support people with Autism into education, training and work In North Somerset, we intend to work on the basis of presumption of employability for people with autism. This means that our starting point with individuals should be to look at what attributes or skills they have that could lead to employment. This should start from childhood at school and continue through college and further education. Our ultimate aim is to establish a wide range of employment opportunities, including voluntary work, full- and part-time working and selfemployment. It is important that Adult Colleges and other learning institutions offer good support not only to those with a diagnosis of autism, but also those identified as needing support that have traits of autism. Priorities for action Support for developing skills Clear routes into work/work experience Joined up working between schools and employment sector Seek support from community services, such as the Carlton Centre, to identify, plan and review skills of adults with autism in order to support them into paid employment. Work with employers to develop their skills and knowledge of the needs of employees with autism. This will improve the experience of people with autism in the workplace. Further consolidate working relationships between schools and the employment sector to provide positive work experience placements. 6e Developing support for people with Autism It is well recognised that service users with autism find it difficult to form meaningful friendships and may not always be supported to develop such relationships. Notably a key factor to ensure service users with autism lead a meaningful life is to reduce the risk of social isolation. All service users with autism need to be supported to have easy access to information in North Somerset about support groups, community groups and charities. Priorities for action To consider the view of local service users Provide a detailed account of the support groups available to The Autism Forum will provide an opportunity for service users to feedback their views on the care and services available to them in North Somerset. Ensure service users and their families are provided with supporting information on how to access support groups, peers groups and local networks. 8
service users Work collaboratively to ensure reasonable adjustments are made to every day services Consider making available a central library of services for all service users and their families to access. Review and develop guidance on reasonable adjustments for people with autism for use by all commissioned services in North Somerset. Ensure that services commissioned in North Somerset are accessible to people with autism and these services know how to make reasonable adjustments or meet service user needs. 6f Support for families and carers Service users with autism have varying degrees of need which may make caring for them challenging but also rewarding. Safeguarding the physical and mental wellbeing of those who care for service users with autism is a crucial component to reducing the risk of care package breakdown. Carers need to be reminded of the excellent support they provide and in turn North Somerset aspires to improve the level of support made available to carers. Priorities for action Information sharing Public engagement Sign post families and carers to the community groups and facilities available to them to ensure they feel supported in the care they deliver. By liaising with the Public Engagement Manager within the CCG, promote all events in North Somerset which may offer support to carers and families. 6g Suitable housing & support for people with Autism Local communities need to provide a supporting living environment for service users with autism. Adults with autism and their families should be enabled to have greater choice and control over where and how they live. A key area of focus is ensuring adults with autism and their families are supported to understand what housing options are available to them, including any financial help they may be able to access. Priorities for action Identification of housing options Promotion of independent living Ensure care and support plans list the desired housing and support options for people with autism. This includes planning for young people in transition and for those with older carers. Ensure the availability of Assistive Technology extends to people with autism. 9
6h Transition from children services to adult services The need for a planned transition in an acceptable time frame is crucial to good care. Establishing an effective hand-over of information between children and adult services for service users with autism is essential. This is not just in terms of information about individuals at the point of transition, but also reflects the need to share information about the needs and number of children with autism in North Somerset to help with longer term planning. Priorities for action Autism diagnostic pathway Parent support groups Seamless handover of care Promote & develop the autism diagnostic pathway within North Somerset for children and young people (SCAMP) Ensure all parents are made aware of support available to them in North Somerset & promote their engagement with groups such as ASCEND A clear & practical clinical pathway to be agreed between children and adult services to prevent people with Autism falling through the gaps between services 7 Next steps The above highlights the key areas agencies across North Somerset aim to focus on over the next 2 years. North Somerset CCG and North Somerset Council along with our partners are committed to improving those areas identified. The action plan (Appendix 1) that accompanies this strategy provides clear timescales to ensure that the goals identified are achieved within the allocated time frame. The progress of each action will be reviewed at the North Somerset Strategy Group for Adults with Autistic Spectrum Conditions meeting via means of a flash report (Appendix 2). 10
Appendix 1: Autism Strategy Action plan Awareness raising Priority Objective Responsibility Timeframe Raise autism awareness Promote & continue to deliver a programme of autism awareness training for frontline health & social care staff (this includes bespoke training packages through BASS) Understand what national promotion work is taking place through NAS Promote Autism education training Alun Davies & Caroline Scrase Nikki Williams/Laura Buckley/Julie Bush Jenny Maxwell To be confirmed after autism event has taken place Promote awareness in other services Information, advice & guidance Hold an autism event Set up planning group for autism event Continue to make available & up-date directory of autism services available in North Somerset to all adults with autism (through BASS website) Explore opportunities for including details within Map of Medicine Alun Davies, Natalie Huggens & Caroline Scrase BASS Natalie Huggens September 2016 May 2016 May 2016 Provide a detailed account of the support groups available to service users Ensure service users & their families are provided with supporting information on how to access support groups, peer groups & local networks BASS September 2016 Clinical service delivery Develop specialist expertise within teams & recognition Explore training options for Online awareness training Appoint an Autism Link Worker within each health & social care team Compare data with CAP to explore trends in diagnosis Alun Davies Alun Davies Jenny Maxwell April 2016 September 2016 May 2016 11
Review BASS data on diagnosis (details of referral source, confirmed diagnosis & number of referrals received) Referral pathway & onward care Promote an effective adult autism diagnosis pathway Diagnostic assessment & clear outcomes/recommendations from this to be completed for all service users entering BASS service Caroline Scrase May 2016 Caroline Scrase April 2016 Joined up clinical work between children & adult services Outline & agree clinical pathway between SCAMP & BASS Review BASS service specification with a view to include working relationship with SCAMP SCAMP & BASS Natalie Huggens July 2016 February 2016 Autism diagnostic pathway Seamless hand-over of care Promote & develop the autism diagnostic pathway for children & young people (SCAMP) Implement a clear clinical pathway between children and adult services for autism SCAMP & Jenny Maxwell July 2016 SCAMP & BASS July 2016 Review of local assessment tools Monitor the operation of local assessments The Autism Forum (via Nikki Williams/Laura Buckley/Julie Bush) Quarterly Personalisation Promote awareness & use of personal budgets. Explore the use of personal health budgets and integrated personal commissioning. Lee Colwill March 2017 Work collaboratively to ensure reasonable adjustments are made to every day services Review & develop guidance on reasonable adjustments for people with autism for use by all commissioned services in North Somerset CCG Commissioning Team (Natalie Huggens to act as lead) February-March 2016 Social inclusion Support for developing skills Involve community services to support development of skills Paul Davis via Well-Being Alliance March 2017 12
Support for developing skills Identify within Well-Being Alliance a representative to lead on the next 2 actions Paul Davis via Well-Being Alliance May 2016 Clear routes into work/work experience Work with employers to develop skills & knowledge of needs of employees with autism Team North Somerset & Job Centre March 2017 Joined up working between schools & employment sector Consolidate working relationships between the sectors Team North Somerset & Job Centre March 2017 Identification of housing options Promotion of independent living List within care & support plans the desired housing & support options for people with autism Extend options for use of Assistive Technology to people with autism Andy Ryan & Alun Davies Bi-annual report Andy Ryan & Alun Davies Bi-annual report Patient & Public engagement Consider the view of local service users Adults with autism to feedback their views on care & services via the Autism Forum The Autism Forum Quarterly Information sharing with families & carers Public engagement Sign post families & carers to community groups BASS Bi-annual report Promote engagement events in North Somerset which may offer support to carers & families with a family member with Autism Mary Adams, CCG Public Engagement Manager Alan Davies, NSC On-going Parent support groups Ensure all parents are made aware of support available to them such as ASCEND Jackie Oxley On-going 13
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