Early access to services means children and young people are thriving and resilient

Autism

Services for needs including autism, speech language and communication or social, emotional, and mental health needs are delivered at the right time.

Local Needs

Autism affects people in varying ways, with different people having very different strengths and weaknesses. It is therefore especially important that support is personalised and takes into account the individual’s strengths, needs, views and circumstances.

Based on population prevalence measures, an estimated 7,987 5-24 year olds in Devon have a neurodevelopmental disorder, of which 1840 have autism and 3812 have a learning disability[18]. The prevalence of child disability – including neurodevelopmental disorders – increases as socio-economic status decreases. Intellectual and developmental disabilities are strongly associated with socio-economic disadvantage, whereas the association is weaker for physical disabilities. Parents and children from disadvantaged households may be more exposed to risk factors such as inadequate nutrition, environmental pollutants, unsafe housing, tobacco smoke and infections. These factors may interact with other risk factors which may increase the risk of being born with or developing a disability, as well as negatively affecting their condition[19].

While only 6% of SEN support relate to autism, it is the primary need of around 27% of EHCPs in Devon. This suggests a shortcoming in the early support offered to children and young people with identified autism needs to prevent escalation of needs. The number of children and young people in Devon with diagnosed autism exceeds national prevalence figures. For example, the number of Education Health and Care Plan’s (EHCP’s) with autism as a primary need totalled 1935 as of January 2021 – having more than doubled since 2018. Of those children and young people undergoing an autism assessment, currently 86% receive a diagnosis; this has remained stable over a number of years but is higher than other reported areas who report 75-80% and studies who again report lower rates[20]. This recent and rapid increase in autism assessments – with the rate of diagnosis remaining stable – suggests that early needs are not being met effectively. This is leading to an escalation of the education, health and care support required by these children and families, where a diagnosis is the key to accessing the help that they need. This plan sets out our steps to address this.

During 2020, alongside Young Devon and Parent Carer Forum Devon, we engaged with over 300 children and young people and families who are currently on the autism assessment waiting list through direct conversations as well as a survey. They told us that they experience long periods of time on the waiting list, often without regular and appropriate communication, information, or support. Families told us they want improved communication and information about the process, the wait times and what happens during and after an assessment. They also made clear that it would be important to have signposting services, including an online resource, from which they could access more advice, support, and guidance. What they told us is directly informing our steps to improve services for children and young people with autism.

[18] Devon’s Joint Strategic Needs Assessment for Children and Young People with Special Educational needs and Disabilities (SEND) 2017, published by Public Health Devon, page 41

[19] Devon JSNA for children and young people with SEND, page 56-57

[20] https://www.healthyork.org/media/62035/autism-needs-assessment-2016.pdf) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6513463/

Where we are now

Bar chart showing the number of children waiting for autism assessment

The Autism Assessment Service is commissioned by the CCG and is provided by Children and Family Health Devon (CFHD). Currently, in Devon, there continue to be prolonged delays in the autism assessment service. As a Partnership, we know this is not acceptable because of the negative impact creates for children and their families. 2,844 (March 2021) children and young people are currently on the assessment waitlist, up 44% from 1800 when the contract transferred to CFHD.

Some families are waiting up to 18 months for an assessment and the average length of time that children are waiting has also increased by 30% between February 2020 and February 2021 (the current median wait-time is 82 weeks).

The prolonged delays waiting for an autism assessment result from service provision being unable to keep pace with demand, with insufficient clinical capacity to clear the backlog. Demand has increased by 75% in the three years to 2019-20, while, during COVID, the referral rate only dropped by 25%. Changes to senior leadership, workforce instability and the challenges of the pandemic have also exacerbated the delays.

We are committed to working together to change this. The needs of all the children waiting have been reviewed and additional support has been put in place while they are waiting. This includes regular contact with families and access to other services who can offer support such as speech and language teams and CAMHS. All families, on the waitlist, have now been communicated with on up-to-date wait times and signposting to online resources and workshops. CFHD are building this into the service and embedding the learning.

In addition, to support young children with neurodevelopmental needs, Children’s Centres have developed specialist capacity through the expansion of the multi-agency Increasing Access to Psychological Therapies (IAPT) programme. The expansion of the programme seeks to identify and support neurodevelopmental needs early on, helping children and families access the help they need.

We have also undertaken training and awareness raising to schools and settings throughout 2018/19 called the Devon Enhanced Language Programme and the Devon Enhanced Autism Programme. Education and Inclusion services continue to support schools to adopt strategies in line with the graduated response which meet the needs of children early in their education setting. Specialist support is also available from the Communication and Interaction team and Behaviour Support teams currently provided by Babcock. Further details of our progress in improving services for children with autism can be found in the latest Written Statement of Action (WSoA) Progress update.

We are committed to delivering a continuum of support for children as they grow and develop. Including tailored support for complex neurodevelopmental needs in children that may trigger periods of crisis or significant needs which disrupts participation in everyday life.

DCC also commissions individual support for families following assessment of need. In partnership with parents and carers, sometimes the chosen offer of support and intervention is delivered via the use of the BisNET service provided by CEDA if it is felt to best meet need. This service offers; Training services for parents and carers, relationship Development Intervention (RDI®) consultation, Family Therapy service, Community Support.

What we will do

Through the SEND Transformation, children and young people with neurodevelopmental needs will be supported through a system-wide, multi-disciplinary redesign. We will set this out in our Autism Strategy. Parents and carers have told us that the waiting times for assessment and diagnosis are too long and have a significant impact on families. The lack of a clear offer of support early when the needs of children first present is also an area for development. This feedback, combined with the performance and the needs data above, have led us to setting the priorities below.

Getting Advice

Ensure there is easier access to information, support, advice, and training for families through an improved online offer which has resources and online workshops
Extend access to telephone support for families and practitioners provided by specialist autism practitioners

Getting Help

Develop and embed autism expertise within the Early help offer to families
Roll-out the joint funded pilot health navigator/connector role during 2021, embedding the roles within the Early Help offer and coordinate pre assessment support
Provide training to develop the skills and confidence of the multi-agency workforce to meet individuals’ needs as an alternative to referring for a diagnostic assessment as well as being able to contribute to the assessment process.
The Youth Service and our careers advice and support service, CSW Group (formerly Careers South West), will ensure the support for young people with autism is comprehensive and effective, including by improving the skill, knowledge, and competence of staff in supporting children and young people with neurodevelopmental disorders. For the youth service, this is being actioned through Space’s staff development.
Expand and evaluate the national Key Worker Pilot. Key Worker pilots have now been established (Devon is one of the 13 locations) in response to the NHS Long Term Plan commitment, that by 2023/24, children and young people with a Learning Disability, autism or both will have a designated Key Worker.
Revise the criteria for assessment and identifying the core support that is required prior to referral for diagnostic assessment. This will improve the pathway of support, from the date of referral and the advice that is given to parents and carers as well as improve the timeliness of assessments
Improve support for families with children with autism or similar needs. This will be through a health led Community Intervention offer an evidence-based programmes such as Early Bird[21] and ASCEND[22].
Review and expand the family support offer for children over the age of 8 with neurodevelopmental needs. Family Intervention Team and some small VCSE providers. The offer will be reviewed and increased by Summer 2021.

Getting More Help

Resolve the number of children waiting for an assessment and reduce the length of time that children and young people are waiting for a diagnostic assessment by November 2021
Pilot a new Nurse for Care Leavers role in 2021 and ensure professionals know where and how care leavers can access additional support where they have a diagnosis or a suspected diagnosis of a neurodevelopmental need. As corporate parents, we will ensure children in care and care leavers are supported as a priority group.
Using the resources available through the NHS Long Term Plan for Learning Disability and Autism develop the Learning Disability Service with a multidisciplinary team offer including SALT and OT capacity to respond to the needs of children with autism and children with a mild to moderate learning disability. This will be connected to both a complimentary early help offer to meet need early or offer step down support but also take an assertive outreach approach to provide support where families need more help. This will also address the current gap for family support for children with Pathological Demand Avoidance.
The review and re-commissioning of Devon’s Short Breaks will deliver an offer which reflects the neurodevelopmental needs of children and young people, by Spring 2022.

How we will know we are making a difference

Outcomes for children and young people

Outcomes at Early Years Foundation Stage (EYFS) for children with autism have improved
Pupils with autism as a primary need of an EHCP or SEN Support are achieving better educational outcomes
Fewer pupils with autism are being excluded or inappropriately electively home-educated
Early tailored support for children with autism to prevent routes into offending
Children will be prevented from experiencing crisis or family breakdown by receiving support at the right time and early.
Children without a diagnosis but in need of tailored specialist support receive this at the right time.

Outcomes for services

The assessments and diagnoses are undertaken within the 18 week referral to treatment time
Children and families have easy and early access to the support they need
We are supporting more children with neurodevelopmental needs at a younger age and can demonstrate an expanded offer of advice, guidance, and support to children who have autism or autism traits

[21] Family support (autism.org.uk)

[22] About Ascend Autism | Behaviour Analysis Company Westchester NY

Speech language and communication

Local needs

It is widely accepted that over 10% of all children and young people have some form of speech, language, or communication need (SLCN) that persists and impairs their social and/or educational functioning. 2.5% of children have a language disorder associated with another biomedical condition, such as autism, learning disabilities, sensory-neural hearing loss, cerebral palsy, or Down syndrome. While around 7.5% of children have a language disorder that is not associated with another condition. This is known as Developmental Language Disorder. In addition, it is estimated, that in areas of high social deprivation across the UK, between 40% and 56% of children start school with communication difficulties.

In Devon, it is estimated that there are 33,339 children and young people with speech, communication, and language needs (SLCN), aged 0-24yrs[23]. It is important to note that whilst these figures are not indicative of all children and young people needing direct speech and language therapy, they are indicative of the demands placed on the speech and language therapy (SLT) service to support whole system change.

SLCN are a significant risk factor for poor educational attainment, employability, offending and Social, Emotional, Mental Health (SEMH). Research has shown that 81% of children with emotional and behavioural disorders have significant unidentified language deficits[1]. The presentation of communication difficulties is common in children and young people accessing mental health services. SLCN and SEMH are also disproportionately found in populations of children and young people in care or known to Youth Offending services. The diagram shows the compounding risks and vulnerabilities that stem from SLCN.[25]

The needs analysis undertaken in 2019, supported by Marie Gascoigne (Better Communication CIC) and the Balanced System® online mapping tools found that the ratio of speech and language therapists to local SLCN as 1.54 WTE per 1000 population of predicted children with SLCN. Which is below a nationally recognised ratio of 1.9 and 2.2 Whole Time Equivalent SLT per 1000 as good local practice. It also found a shortfall in the sufficient levels of professional expertise, skills, and knowledge in meeting SEMH needs at all levels, as well as a need to strengthen the advice and initial help and support we give children and their families.

In February 2021, there were 2,631 children and young people on the SLT wait-list. This is a 40% increase on the wait-list numbers in February 2020. This is in part an impact from COVID-19 and the standing down of services in during the first national lockdown. As a result of increasing pressures on services, more than half of these children and young people are waiting for longer than the 18-week threshold, while the numbers waiting over 52 weeks for treatment has substantially increased to a total of 382 – almost 15% of all those waiting.

[23] This is based on a composite index based on the prevalence of existing diagnosed disorders which affect speech, language, and communication, as well as an assessment of levels of disadvantage which is likely to lead to poor development of early language and communication skills.

[24] Hollo A, Wehby JH, Oliver RM. Unidentified Language Deficits in Children with Emotional and Behavioural Disorders: A Meta-Analysis. Exceptional Children 2014; 80(2): 169-186. http://journals.sagepub.com/doi/abs/10.1177/001440291408000203

[25] 2015. Bryan, K, Garvani, G, Gregory, J and Kilner, K. Language difficulties and criiminal justice: the need for earlier identification. International Journal of language and Communication Disorders, 50. 763-775. Doi: 10.1111/1460-6984.12183.