Executive summary
Autism touches the lives of many people living in Coventry and Warwickshire and can affect many aspects of life, from school to healthcare to employment, housing and social lives. As such, this Strategy takes an all age and whole life approach and encompasses children, young people, adults, older adults and their parents and carers with the following vision:
Autistic people and their families 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.
This is a joint five-year strategy which is owned by the following organisations:
- Warwickshire County Council
- Coventry City Council
- NHS Coventry and Warwickshire Clinical Commissioning Group
By making this a joint strategy between key statutory organisations, all partners will be equally responsible and accountable in improving lives of Coventry and Warwickshire citizens living with autism, and their parents and carers. An All Age Coventry and Warwickshire Autism Partnership Board will oversee the delivery of this strategy, comprising representatives from the social care, health and education sector, community and voluntary sector and primarily, autistic people, their parents and carers as experts in experience.
Being autistic does not mean you have an illness or a disease. It means your brain works in a different way from other people. Autism is not a medical condition with treatments or a “cure”, but autistic people often need support to varying levels across four main areas: social communication, social interaction, social imagination and sensory processing. There are positive aspects to autism including attention to detail; an ability to focus deeply and avoid distractions; keen observation skills; an ability to absorb and retain facts, linked to high levels of expertise in particular topic areas; unique thought processes and creativity leading to innovative solutions; tenacity and resilience; and integrity and honesty.
It is recognised that not all autistic people require support, and that many lead independent and fulfilled lives without any help from specialist statutory or community services. This strategy will therefore build on existing skills and capabilities of autistic people and will advocate for a strength based and person centred approach.
There is currently no specific budget for coordinated autism services and support. The strategy must therefore be delivered in a way that ensures existing resources are used in the most cost-effective way, including promoting prevention and early intervention and making all existing services and pathways of support more accessible and effective for autistic people. This strategy is informed by a range of co-production and mapping activity undertaken to build a shared understanding of the experience of autistic people of all ages and their families and carers in accessing support appropriate to their needs and getting a formal diagnosis of autism. A robust co-production approach will be used throughout all stages of Strategy delivery to ensure that we build on strengths, experience and voice of individuals with direct experience of using health and social care services in supporting them in relation to autism related needs. Parent and carers will be equally supported and will be recognised as experts in experience.
A Joint Strategic Needs Analysis for Autism and ADHD, completed in 2019, highlighted the challenges in understanding the true prevalence of autism in the population as there is no national register and data is not routinely captured about where autistic people access services. The JSNA highlights the inequalities in health, education and social outcomes of autistic people compared to non-autistic groups for almost all conditions studied including mortality, self-harm, suicide, obesity, smoking, bullying, social isolation, education, criminal justice, employment and homelessness. 80% of autistic adults and 70% of autistic children and young people will experience a mental health condition including anxiety or depression and there is more to be done to reduce the numbers of autistic people admitted to mental health hospitals. This joint Strategy is aimed at reducing inequalities experienced by autistic people by delivering a range of activities which improve their overall health and wellbeing outcomes.
This strategy incorporates the statutory duties outlined in the Autism Act, Care Act, Children and Families Act and the NHS Long Term Plan and builds on the previous Warwickshire All Age Autism Strategy (2014 -2017) ‘Fulfilling & Rewarding Lives’ and the joint commissioning plan developed by Warwickshire County Council and Coventry City Council in 2017. Significant progress has been made in Warwickshire and Coventry since the previous strategy to develop diagnostic pathways for adults and children; pilot new support services for autistic people pre and post diagnosis and those in mental health crisis; improve support for young people in education with communication and sensory needs; and deliver autism training for parents, carers and the wider workforce. However, conversations with autistic people and their families revealed stories of autistic people struggling to cope with the stresses of daily life and of the effort it takes for individuals, their family members and professionals to understand how pathways work and how to access the support they need and are entitled to.
Particular issues highlighted through co-production include:
- There is an increasing demand for specialist autism services and in particular long waiting times for diagnostic assessments, which is further impacted by national workforce shortages in specialist autism roles.
- People with social, communication and sensory needs who are waiting for a diagnostic assessment are not getting the support they feel they need from services. Similarly, while a diagnosis is an important step in understanding the challenges they experience, a diagnosis alone is not sufficient to meet peoples’ needs while there remain gaps in specialist support and in the capability of mainstream services to appropriately support autistic people. This is particularly a priority within mental health services and education.
- Support is not coordinated across services and people working in services often do not feel confident in their capability to effectively support and treat autistic people.
- Moving between different stages of life, such as school, college and work, is especially hard if you find change difficult, as many autistic people do. Support for autistic people therefore needs to be prioritised around periods of transition.
Based on the evidence base gained through the coproduction and research activity, as well as statutory responsibilities for partner organisations, five priority areas have been identified.
Priority 1:
Support autistic people and people with social, communication and emotional health needs to help themselves pre and post diagnosis Improve early identification of characteristics linked to autism through wide ranging education and training and reduce the need for a diagnosis to access appropriate support. Provide information and advice to people with social, communication, sensory and emotional health needs in order to promote self-management, family resilience, independence and wellbeing. Enable and empower people to develop their own solutions and networks of support in their communities through developing a better understanding of the third sector services people are using; enhancing peer support networks and facilitating information sharing.
Priority 2:
Reduce inequalities for autistic people and make Coventry and Warwickshire autism friendly places to live Improve the health and wellbeing of autistic people through developing autism friendly towns and cities in Coventry and Warwickshire, including taking action to ensure autistic people experience equality of access and inclusive services and support. We all want to live in communities that support each other, without prejudice, to get the most out of our lives. Respecting human rights, citizenship and offering inclusive approach to all citizens must extend to everyone, including in access to education and employment, and autistic people as well as their parents and carers should be no exception. Commission and deliver mainstream and specialist services in a way which does not restrict access nor exclude people on the basis of an autism diagnosis. It is the responsibility of all services to ensure accessibility and appropriate support for autistic people within their service, acknowledging that this may require training and development for the workforce.
Priority 3:
Develop a range of organisations locally with the skills to support autistic people Ensure that a wide range of organisations that can provide skilled support and services are available and accessible in local areas to meet the health, care and education needs of autistic people. Enhance the skills of our existing workforce to achieve more personalised support from services through an increased understanding of autism across the workforce, from awareness raising through to specialist autism expertise.
Priority 4:
Develop the all age autism specialist support offer Commission and deliver a coordinated and personalised offer of support for autistic people across all levels of need, promoting early intervention and enabling people to navigate this offer as their needs change. This includes redesigning the autism diagnostic pathway and focussing on all age pathways to better support transition from children’s services to adult services.
Priority 5:
Co-produce, work together and learn about autism Co-produce solutions and services with autistic people and their families and collect and share the information that will enable us to learn and improve our offer to autistic people. Evaluate the impact of Covid-19 on the lives of people with autism and commission services in the way that responds effectively to people’s needs during and following the COVID-19 pandemic
A number of objectives have been developed against each of the priority areas (see page 29). These Coventry and Warwickshire wide objectives will be underpinned with place-based delivery plans that will ensure this strategy is delivered within the local context of services and support and that it has an active life cycle