Coventry and Warwickshire Joint Strategy for Autistic people 2021-2026

8. National Context

8.1 This strategy is delivered within a context of significant reform within health and social care including the implementation of the Transforming Care Programme 2015 - 2019 following the horrific experiences of those living at Winterbourne View; Building The Right Support 2015; The Care Act 2014; The NHS Long Term Plan; The Children and Families Act 2014 and the SEND code of practice all of which have a golden thread of personalisation, choice and empowerment and the delivery of support that promotes prevention and wellbeing running through them. It is therefore timely to present this Warwickshire and Coventry Autism Strategy to ensure that it reflects current national and local priorities. The Strategy is further shaped by a number of published reports included in Appendix 1:

8.2 In July 2021, the government published the National Strategy for autistic children, young people and adults, a strategy for meeting the needs of autistic adults in England. The strategy supports the Autism Act 2009 and sets out a vision for what we want autistic people and their families’ lives to be like in 2026 across 6 priority areas. While the local strategy and local priorities were developed prior to the publication of the national strategy, there is close alignment between the two. With the publication of the national strategy comes the opportunity to access funding and national programmes that will support delivery of our local strategy.

8.3 Statutory guidance for local authorities and NHS organisations to support implementation of the Adult Autism Strategy was published in 2015 and is reflected in this local strategy. This includes:

• Training of staff who provide services to adults with autism
• Identification and diagnosis of autism in adults, leading to assessment of needs for relevant services
• Planning in relation to the provision of services for people with autism as they move from being children to adults
• Local planning and leadership in relation to the provision of services for adults with autism
• Preventative support and safeguarding in line with the Care Act 2014
• Reasonable Adjustments and Equality
• Supporting people with complex needs, whose behaviour may challenge or who may lack capacity
• Employment for adults with autism
• Working with the criminal justice system

8.4 The Children and Families Act (2014) requires Local Authorities and Clinical Commissioning Groups (CCGs) to make provision for joint commissioning arrangements for education, health and care provisions for children and young people with Special Education Needs (SEN) or disabilities, including young autistic people. The Act and the SEND Code of Practice (2014) requires Local Authorities to identify all the disabled children and young people in the area, including those who may have SEN, and to publish and maintain a local offer that sets out the education, health and social care provision that the local authority expects to be available for disabled children and young people and those with SEN.

8.5 NHS Long Term Plan (2019) includes a specific focus on autism and learning disabilities. There is currently no clarity on how much funding will be made available to support delivery of the plan, but it is likely that any funding will be targeted at improving the offer of support for autistic people through the wider workforce. A key deliverable of the NHS Long Term Plan (2019) and Building the Right Support (2015), is a reduction in the numbers of children and young people with a learning disability and/or autism admitted to a mental health hospital. This has been known as the Transforming Care programme.

9. Local Context 

9.1 The development of Coventry and Warwickshire’s Autism Strategy 2021- 2026 is shaped by the following local policy framework:

• Coventry and Warwickshire Health and Wellbeing Concordat • Coventry and Warwickshire Local Response to the NHS Long Term Plan for people with Learning Disabilities and Autism (2019)
• Warwickshire county council one Organisation plan 2020
• One Coventry: Council Plan 2016-24
• Warwickshire SEND & Inclusion Strategy 2019- 2023
• Coventry SEND Strategy 2019 to 2022 Lifting the Cloud of Limitation
• Warwickshire Learning Disability Statement of Intent “Its My Life” 2015-2020
• Coventry Learning Disability/Autism Services Market Development Plan for Adult Care Services 2019-2022

9.2 It is helpful to reflect on the achievements of 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 with the Warwickshire Autism Partnership Board in 2017. There have been significant positive changes since the previous plans were written:

• The commissioning of a specialist neurodevelopmental service to undertake diagnosis of autism, ADHD and other cooccurring neurodevelopmental services. The service now delivers pre-school, school age and adults diagnostic pathways within one service. There has been work to streamline the diagnostic pathway and improve support pre- and post-diagnosis with the introduction of online education resources, the dimensions tools and group support.
• New services have been commissioned for autistic people, both to provide early help through community outreach and at the more complex crisis end through intensive support for young autistic people with autism which has had a significant impact on the numbers of young autistic people in CAMHS Tier 4 hospital beds. We have learned a lot from the services that have been commissioned and piloted over this period.
• The SEND and Inclusion programmes have increased the support available to those with social, communication and sensory needs in schools and specialist education settings, including some young people with an autism diagnosis. There has been significant work to reduce the need for a diagnosis to access appropriate support in schools.
• There is rising awareness of autism across services, and a range of training programmes delivered to staff from health, social care, education and the third sector to support autistic people. Parent training has been delivered to parents of young autistic people and autistic adults with very positive feedback.

9.3 However, despite considerable work to achieve the objectives agreed in the joint commissioning plan in 2017, autistic people are still not always able to access the support they need, hence the need for this refreshed strategy.

9.4 In line with the principles of joint working outlined in the Health and Wellbeing Concordat, a joint Coventry and Warwickshire integrated commissioning function was established in 2018, enabling a specific focus on autism which is coordinated across health and care commissioners for Coventry and Warwickshire.

9.5 Autistic people are supported through a variety of services in Coventry and Warwickshire. Some of these services are not designed specifically for autistic people. The services detailed in Appendix 1 are examples of the ones that are designed specifically to meet the needs of autistic people. The list is not exhaustive but represents the key services discussed in the coproduction activity. 9.6 The list of services highlights the fact that the majority of autism-specific support across Coventry and Warwickshire is either pre-diagnostic or very soon after diagnosis, or very specialist support to prevent admission to hospital. Many of the services listed are pilots, with reviews planned to develop business cases for ongoing services. Through this strategy the development of pathways of support for autistic people will be coordinated.

10. Prevalence of Autism

10.1 It is difficult to measure the prevalence of Autism as there have been inconsistencies in diagnosis over time and across locations. There is no register of people with Autism recorded nationally or locally and so the true number of people with Autism in Coventry and Warwickshire is not known. Pockets of information are available only when people with Autism use certain public services that record an Autism diagnosis as part of their administrative data, like adult social care; but most do not.

10.2 A Joint Strategic Needs Assessment (JSNA) for Autism and Attention Deficit Hyperactivity Disorder (ADHD) was completed for Coventry and Warwickshire in 2019. As there is no accurate local data, the JSNA applied national prevalence estimates of between 0.8 and 1.1% of the population, suggesting there are an estimated 4,770 people living with autism in Warwickshire and 3,197 in Coventry. Due to population growth alone, the total population of people with ASD is expected to rise slowly over the next 6 years to 4,894 in Warwickshire and 3,467 in Coventry by 2025.

10.3 Local data collected by the neurodevelopmental diagnostic service suggests that national prevalence may underestimate the true number of autistic people in Coventry and Warwickshire. National prevalence estimates indicate the numbers of children in Coventry and Warwickshire with Autism should be 673 and 990 respectively, giving a total of 1663 young people across the sub-region. Since April 2017, over 7000 referrals have been made to the pre-school and school age neurodevelopmental service. On average, the service diagnoses 70% of the young people referred. This would mean that there are potentially over 4,000 young people who have been diagnosed in the last 3 years alone across Coventry and Warwickshire.

10.4 This either means that national prevalence estimates are underrepresenting the true prevalence, or we have a higher prevalence locally, or the system is over responsive to potential autism. By including a key objective through this strategy to learn more about the needs of autistic people locally and where they access services and support we will be attempting to improve our data and understanding of prevalence. It is important to note that all of the people referred to the neurodevelopmental service represent people with social, emotional, sensory and/or communication needs that require support, regardless of their diagnosis.

11. Inequalities experienced by autistic people

11.1 Health, education and social outcomes of autistic people are worse than non-autistic groups for almost all conditions studied, according to key outcomes from the Liverpool John Moores review into neurodevelopmental conditions in 2017 which are summarised in Table 1.

11.2 In addition to the above, research (Churchard, A., Ryder, M., Greenhill, A., & Mandy, W. (2018). The prevalence of autistic traits in a homeless population. Autism, 1362361318768484) has shown that 12% of a group of people experiencing homelessness showed strong signs of autism. It is likely that autistic people are not only more at risk of becoming homeless, but also more vulnerable once they are on the streets; they may also find it more difficult to move into new accommodation.

11.3 Autistic people nationally experience long waits for autism diagnosis. The NICE Quality Standard on autism states that the wait between referral and first diagnosis appointment should be no more than 3 months. Research in 2018 from Rt Hon Norman Lamb MP and the All-Party Parliamentary Group on Autism uncovered stark regional variation and long waits for autism diagnosis nationally, with many children waiting more than two years for a diagnosis.  

11.4 A quarter of the general population have problems with their mental health at some point in their life. In autistic people, this number is much higher with almost 80% of autistic adults experiencing mental health issues during their lives according to the Warwickshire and Coventry Joint Strategic Needs and Strengths Assessment 2019.  

• 50% More than 50% of autistic adults have had depression 79% Mental health issues affect 79% of autistic adults, but many do not get the help and support they need
• 9x Autistic adults (without an intellectual disability) are over 9 times more likely to consider suicide than the general population 42% Anxiety disorders affect 42% of autistic children compared with just 3% of children without autism
• 40% 40% of autistic people are diagnosed with an anxiety disorder but many more will experience symptoms of anxiety that affect how they live their lives

12. Financial Context  

12.1 The Warwickshire and Coventry health and social care economy continues to face significant financial pressures. Prioritising need and demand continue to be a challenge within a finite financial envelope. With the national strategy and the NHS Long Term Plan comes an opportunity to access short term funding to support innovation and redesign of services. This 5-year strategy’s primary focus is to re-shape and re-design current support offers and services within existing financial resources to adults, young people and children with autism spectrum disorder (both diagnosed and undiagnosed) As a result, the delivery of objectives will be achieved by working collaboratively as partners to ensure best value is achieved in commissioned services; by prioritising early intervention and developing an offer of care and support that prevents escalation of need.

12.2 As outlined in the Joint Strategic Needs analysis, the data available on autistic people and where they access services is not readily available. The actual amount spent locally on support for autistic people is therefore also difficult to calculate, as people are supported by a wide range of services and there are no flags in information systems to identify autistic people, for example within mental health services. National estimates have been used to calculate the cost to the Coventry and Warwickshire system of supporting autistic people. Further work is required to identify and quantify the current cost of support for autistic people and to make the case for reducing the demand for specialist and crisis services through investing in early intervention and enablement.

12.3 A 2014 study into the average cost of supporting autistic individuals over their life course estimated the cost to be £1.5 million for someone with learning disabilities and £0.92 million for someone without (at 2011 price levels). Using the population prevalence figures included in the JSNA, this suggests the total cost of supporting people with autism in Coventry and Warwickshire is approximately £9,177 Million.

12.4 Based on what we know about where autistic people access services, we can identify potential opportunities to reduce spend on high cost services (including mental health crisis and hospital services, residential care and high needs block education funding) through investing in earlier intervention, with almost two thirds of parents considering a lack of timely support as the reason for their child having higher long term support needs.