Evaluating needs and health service provision for children and young people with autism in Suffolk (Excluding Waveney)

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1 Evaluating needs and health service provision for children and young people with autism in Suffolk (Excluding Waveney) Summary report of finding and recommendations August 2015 Author: Maija Huttunen-Lenz, Programme Manager, Public Health Consultant & Report Owner: Dr Mashbileg Maidrag, Consultant in Public Health

2 Contents Tables... 2 Executive Summary Introduction Background Scope of the review The review approach and structure Setting the scene National and local strategy for ASD The CCGs objectives regarding the autism services in Suffolk Understanding epidemiology, needs and demand Defining autism spectrum disorder Prevalence Incidence Population projections Current service provision and its review Overview of the current Autism service structure and provision for children and young people Service specifications Service demand and performance data General performance data conclusions Service provider and Service user feedback Assessment of the current provision in line with the NICE Guidelines Identified gaps in the current service provision Service gaps Disparity of service availability for different age groups Lack of joint working between services Return to services after discharge for short-term inventions Access to mental health services Lack of social services involvement Lack of single point entry and advice point across services Lack of clear understanding of whose responsibility is to provide additional support for educational settings Conclusions Recommendations P a g e

3 10. References Appendix 1: Service Specification Discussion Tables Table 1: Prevalence of ASD in Suffolk (excluding Waveney)... 6 Table 2: Population projections for 2020 and 2025 with estimated number of ASD... 7 Table 3: The current service structure, contractual arrangements, and provision (all ages) in Suffolk. 8 Table 4: Referral number for the 0-11 ASD pathways... 9 Table 5: Diagnostic outcome P a g e

4 Executive Summary Introduction Assessment, diagnosis and support services for children with autism spectrum disorders in Suffolk (excluding Waveney) are commissioned by the Ipswich and East Suffolk CCG and West Suffolk CCG. Presently, the services for 0-11 year olds are provided by Serco in partnership with South Essex Partnership Trust (SEPT) and delivered by Suffolk Community Healthcare (SCH) whilst assessment and diagnostic service for children aged 11 to 17 is provided by Norfolk and Suffolk Foundation Trust (NSFT). The need to improve services for children and young people with Autism is a major priority for Clinical Commissioning Groups, Suffolk County Council (SCC) and parents locally. This service evaluation aimed to identify gaps and areas of improvement in the service provision, as well as demand for the services. Epidemiology Autism spectrum disorders (ASD) refers to a range of neuro-developmental disorders characterised by difficulties in communication, understanding social behaviours, and imaginative thinking. Estimated prevalence of ASD is about 1.6% of the population, when undiagnosed cases are accounted for. ASD is more prevalent among boys than girls. It is estimated that up to 2000 children aged 0-17 in Suffolk may have ASD, though the number of diagnoses is lower. Methods This service review used mixed methodology, including qualitative and quantitative methods both in data collection and analysis. Service level agreements and documentation were requested from both commissioners and service providers, while semi-structured interviews (with commissioning leads) and focus group (with parents/families) were used to gather additional information. Main findings Disparity between the services for children diagnosed before or after the age of 11 is clear when compared to the NICE guidance. The NICE guidance emphasises that the service provision should be similar for all children and young people up to the age of 19. Other issues that emerged from the comparison are lack of formal arrangements for care co-ordination, and uneven access to psychiatric services. It is clear that both services recognise the importance of supporting the family and carers of a child and a young person with autism. However, available support is not consistent between, or, indeed, within services. Most comprehensive support is available for those aged 0-4. Although children aged 5-11 are offered comprehensive support and interventions, they have no access to specialist health visitor support. Children aged have access only to assessment and short-term support, which may not be tailored to their exact needs. Furthermore, children over the age of 11 who have been diagnosed with ASD and discharged from services cannot re-access services. 3 P a g e

5 Additionally, during the discussions between the CCG commissioners and the service providers it became apparent that there was a lack of consensus on how the service providers and the CCG commissioners viewed the service specifications and monitoring requirements. There are unresolved issues, such as service scope, between the service specification and the actual service provision, which needs to be revisited by the commissioners and service providers. Service outcomes for both services were lacking in clarity and specificity, and service specifications would benefit of more specific, measurable and achievable outcome expectations. Conclusions Services for those needing assessment, diagnosis and support for ASD in Suffolk (excluding Waveney) are fragmented with disparity of available services between age groups. The fragmentation of the services appears to result from commissioning arrangements that have developed over the time to meet the needs of under and over 18 populations groups. Furthermore, services themselves have evolved to meet the needs of population. The services provided for under 11 year olds are comprehensive, and tailored to individual needs. In contrast, services for those aged 11 to 17 offer assessment are limited to short-term support after diagnosis. Recommendations Develop age inclusive ASD pathway/s for children under the age of 19 as per NICE guidance. Pathways do not need to be provided by a single service, but should offer equal access to services. Post diagnosis therapy provision to be embedded in pathways/services. Develop more robust care-coordination and use of care plans. Develop flexible pathways how children can re-access services for a short-term support after discharge, if e.g. school transition causes difficulties. Clarification of access criteria to mental health services and better cooperation with CAMHs. Services should have direct access to a social worker. Links and cooperation with schools should be developed so that school can receive advice on management of CYP with ASD. Service specification should be clear and outcomes specific, measurable and achievable. Robust condition or pathway specific data collection system should be developed. Joint working with partners, especially education. 4 P a g e

6 1. Introduction 1.1. Background Assessment, diagnosis and support services for children with autism spectrum disorders in Suffolk (excluding Waveney) are commissioned by the Ipswich and East Suffolk CCG and West Suffolk CCG. The need to improve services for children and young people with Autism is a major priority for Clinical Commissioning Groups, Suffolk County Council (SCC) and parents locally. Presently, the services for 0-11 year olds are provided by Serco in partnership with South Essex Partnership Trust (SEPT) and delivered by Suffolk Community Healthcare (SCH) whilst assessment and diagnostic service for children aged 11 to 17 is provided by Norfolk and Suffolk Foundation Trust (NSFT).This review was undertaken by Public Health with support of the multi-agency steering group between April August Scope of the review The purpose of this service review is to assess whether the current services are meeting the assessment, diagnosis and therapy needs of children and young people (CYP) in Suffolk. Further, it aims to ascertain whether the services meet, for example, NICE quality standards and are compliant with the service specifications. It also aims to identify any gaps in the service provision and areas that commissioners and/or service providers identify as in need of improvement The review approach and structure This service review used mixed methodology, including qualitative and quantitative methods both in data collection and analysis. Literature reviews of published and non-published material were undertaken. Service level agreements and documentation were requested from both commissioners and service providers, while semi-structured interviews (with commissioning leads) and focus group (with parents/families) were used to gather additional information. Service level data were collected regarding the service performance. 2. Setting the scene 2.1. National and local strategy for ASD In Suffolk, strategy group for children and youths with ASD was established in 2012 to provide policy direction and better integration between services. Historically in Suffolk children s and adult s ASD strategy has not been well linked. Lack of integration is potentially hindering development of an age inclusive strategy and service planning for those transferring between children s and adults services. The recent developments in joined-up autism strategy work have suggested that as a response to the acknowledged lack of coherent ASD strategy development, children s and adults ASD strategy groups have been combined (personal communication, April 2015) The CCGs objectives regarding the autism services in Suffolk The CCGs feel that there are the two main issues with current service provision as currently commissioned; the fragmentation of the services due to multiple providers the perceived lack of support in schools for children on autisms spectrum. To some extent, there appears to be uncertainty between the CCGs and the local authority whether help in schools should be funded by health or educational budgets. This is especially evident for 5 P a g e

7 older children, as the current service for 11 to 17 year olds provides assessment and diagnostic service with limited post-diagnostic support. The CCGs vision is to work towards an inclusive service without arbitrary age limits that provides a service based on needs, not an age. It is recognised, however, that the current funding arrangements between the services may hinder service reconfiguration. Currently 0-11 and services are funded from health budgets, whereas adult (18+) services are co-funded by health and the local authority social care services. 3. Understanding epidemiology, needs and demand 3.1. Defining autism spectrum disorder The term autism spectrum disorders (ASD) refers to a range of neuro-developmental disorders characterised by difficulties in; verbal and non-verbal communication, understanding social behaviours and relating to people and objects, imaginative thinking, and flexible behaviours. As the terms spectrum implies, symptoms and the severity of the symptoms differs markedly between individuals. Within autism spectrum disorders it also included Asperger s syndrome which is considered as being on the mild end of the autisms spectrum Prevalence The estimations of prevalence of ASD among children up to the age of 11 range from 0.5% to 1.6%. 5,6 Overall, it is estimated that the prevalence of children diagnosed with autism is around 1% 5,6 but increases to 1.6% when children with undiagnosed autism are taken into account 6. The prevalence of autism is higher among male (2%) population than among female (0.3%) population 7. Although estimates vary, it is suggested that up to 50% of individuals with ASD have some additional learning difficulties. 8,9 However, even higher proportion of autistic individuals (up to 70%) have been estimated to have at least one, often unrecognised, mental health or behavioural disorder. 10 Table 1: Prevalence of ASD in Suffolk (excluding Waveney) Conditions Prevalence (rate per 10,000) Estimated number in Suffolk (rounded to nearest 10) 0-11 year olds year olds year olds 0-25 year olds UK school-based population study Adjustment of SEN register to account for non-observed cases , ,890 It is estimated that in total there are up to 2890 children and young people aged between 0-25 with autism in Suffolk. Using the highest prevalence estimates 5 for Suffolk that include unobserved cases, this would mean that among 12 to 17 olds there are potentially around 231 children with undiagnosed autism. For younger children, this would mean potentially 436 children without formal autism diagnosis which brings the total to Incidence Incidence rate of ASD has stabilised since the observed fivefold increase in incidence of ASD cases in the 1990s. 8,9,12 Therefore, it is not expected that there will be any increase in relative number of children with ASD in Suffolk. This, however, do not mean that the number of referrals for suspected ASD cases may not increase. The yearly incidence of ASD cases among eight year olds in the UK has been estimated as 1.2 per 1000 for boys and 0.2 per 1000 for girls. 8,9,13 However, it is not known whether the autism incidence is same for all the age groups. Although estimates should be 6 P a g e

8 interpreted cautiously, a rough estimate of yearly incidence in Suffolk can be calculated by applying the known incidence across age groups. Based on mid-2013 population estimates, this would mean that each year there are 12 new cases among females aged 0-17, and 79 new cases among males aged Population projections Based on the UK school-based population study, adjusted to unobserved cases 6, was used to estimate changes in total number of children and young people with ASD. In the Table 2 are shown population projections for 2020 and 2025, and estimated total number of ASD cases (diagnosed and undiagnosed). Based on these population projections, it is not expected that the total number of children and young people with the ASD is significantly changing during next 10 years. However, while the total number of ASD cases is not expected to increase, this does not mean that the number of identified cases may not increase. Table 2: Population projections for 2020 and 2025 with estimated number of ASD Area Suffolk excl. Waveney Year 0-11 Estimated Number Age group (all people) Estimated Number Estimated Number 0-25 Estimated Number Current service provision and its review 4.1. Overview of the current Autism service structure and provision for children and young people Services for ASD are commissioned together by IESCCG and WSCCG and managed by the Suffolk NHS on behalf of the CCGs. Presently, the services for 0-11 year olds are provided by Serco in partnership with South Essex Partnership Trust (SEPT) and delivered by Suffolk Community Healthcare (SCH). Due to impending contract changes, and ensuring clarity, the service provider will be called as SCH in the remaining document. NSFT is providing assessment and diagnostic service for children aged 11 to 17. Below in Table 3, we attempted to provide overall picture all age ASD services in Suffolk including their structure, contractual arrangements, and provision. 7 P a g e

9 Table 3: The current service structure, contractual arrangements, and provision (all ages) in Suffolk Age Group (up to 25 if in education) Service purpose Assessment, diagnosis, short- and long-term Assessment, diagnosis, brief intervention (Pilot Service) support Contract type Funder Block contract Health Block contract Health Contract End September 2015 April 2016 Provider SCH NSFT SCH if diagnosed by SCH up to age Case SCH if diagnosed by SCH SCH of 18 Management NSFT for new diagnosis NSFT for new diagnoses Psychological therapy without mental health need Tier 2 and 3 mental health Specialist support in Schools Parenting support Family support How is service organised Support after diagnosis Support outside health services Early Bird Programme (children 5) SCH SCH SCH if diagnosed by SCH up to age of 11 NSFT when diagnosed mental health need in addition to autism Primary Mental Health Workers (PMHW) SCC: County Inclusive Resources for those with definitive ASD Diagnosis in main stream schools. Children should be referred before the KS4 (i.e. before the age of 14, some sources suggest before the age of 11). This service has about 12 teachers for the case load of around 800 children. Children stay in the service up to the age of 16. Postdiagnosis work shops (SCH) Located within Integrated Paediatric Community Service for Suffolk. There is no specific autism service but pathways for pre-school children 0-4 and school age Case management and tailored interventions. e.g. Autism Suffolk (5 to 14) None Contracted out to Suffolk Family Carers, not part of the autism services. Provides family support / parenting programmes for unpaid carers (from age of 13) of autistic children and young persons Those children diagnosed by SCH stay within SCH caseload New assessments requests go to NSFT. All new referrals are assessed by NSFT Case management and tailored interventions if diagnosed by SCH if on-going support needed. Short-term support (up to 3 months) to facilitate understanding of diagnosis. Direct transfer to other services e.g. mental health possible if needed. e.g. Autism Anglia Service specifications During the discussions between the CCG commissioners and the service providers it became apparent that there was a lack of consensus on how the service providers and the CCG commissioners viewed the service specifications and monitoring requirements. Although it was not within the scope of this work to provide a comprehensive analysis of the service specifications, a short-summary of the issues identified in the both service specifications is attached in the appendix 1. However, the main messages were: 8 P a g e

10 The service, or rather pathway specification, for under 11 ASD services would benefit from improved clarity and clear pathway specific outcomes and KPIs. The service specification for the 11 to 17 year olds was comprehensive and described in detail those outcomes the service should achieve. However, a number of the outcomes were system wide and related to wider models of care, which were outside the direct influence of the service Service demand and performance data Children 0-11 services Service for 0-11 year olds provided data for the ASD pathways referral numbers for the last few years. The referral data suggested that there appears to be year on year increase in number of referrals for the ASD pathways (Table 5). The data indicates that between 2012 and 2013 there was 22% increase in the total number of referrals to the ASD pathways. Although no information was available for the whole 2014, comparisons of monthly average referral numbers between 2013 and 2014 show that for East Suffolk there was an increase of 38% and for West Suffolk an increase of 22%. Table 4: Referral number for the 0-11 ASD pathways Month East New Referrals West New Referrals East New Referrals West New Referrals East New Referrals West New Referrals January February March April May June July August September October November December Yearly total Monthly average Further service specific data was provided by the audit covered a period of four months from January 2014 to April Vast majority of the referrals (74%) originated from GPs, with health visitors referring 10% of the children accepted to the pathways. Referrals for the girls consisted 11% of the workload. However, of those diagnosed, girls comprised 20% which is in line with the estimated prevalence. The available data suggested that 58% of the referrals receive ASD diagnosis, of which 24% are more specifically diagnosed with Asperger s syndrome. If estimated that the ASD pathways receive around 300 school age referrals yearly, this would mean 174 new diagnoses each year for school age children. This is very much in line with available evidence that children s 9 P a g e

11 behaviour and conditions became more prominent during school years due to transition and changing circumstances Children and Young People services This is a new service, contracted to assess and diagnose minimum of 180 referrals during the first operational year. The service accepts referrals from a range of professionals, including GPs and school nurses. Service performance data was received for the first 11 months of its operation (April 2014 to the End of February 2015). During this period, the service had worked with 74 children. Similarly with the younger children s service, majority of the referrals originated from GPs (70.2%). Of those who had gone through the assessment process, in majority of cases the diagnostic outcome was either Asperger s syndrome or no ASD (table 6). The service has met the yearly contractual requirements for the number of assessments, and is expected to exceed contractual requirements. Table 5: Diagnostic outcome Diagnosis Male Female ASD (excluding Asperger s Syndrome) 7 2 Asperger's Syndrome 11 7 Diagnosis not recorded 15 3 No ASD 6 3 Awaiting diagnosis 9 8 ADHD 1 0 Other 1 1 Total General performance data conclusions Limited data were available for both services, which limits the review of the actual service performance and service users experience. As both services are part of the block contracts, contractual data reporting requirements and reporting systems appear not to have been set to provide performance data that is condition specific. Furthermore, there is a need to develop data systems that allow capturing the varied interventions offered within the services for those with ASD and beyond. The current lack of detailed performance data limits both the service providers and commissioners ability to form a common understanding of the service pressures and current performance. If this service to be continued future service specifications and contracts need to include detailed performance data requirements and reporting schedules, supported by appropriate information technology resources. 5. Service provider and Service user feedback Staff from both services felt that communication between ASD services and with other agencies was satisfactory, however following concerns were raised by the majority: Both service users and their families can find referral pathways confusing especially for those aged under 11 Access to mental health services is problematic especially for those aged under 11 Difficulties in establishing contact with social services Disparity of available services between and within services. Service users and parents/carers expressed their concerns as follows: 10 P a g e

12 Current services lack responsiveness and a central contact point Difficulties in navigating through the current service to get into the right provision Perceived lack of speech and language therapy and sensory assessment Difficulties in accessing CAHMs provision Lack of effective use of care plans, which has also been highlighted as a service development priority by the under 11 services Perceived lack of support in schools, especially for those over the age of 11 Lack of involvement of social services These views re-inforce the CCG commissioners view that the current service provision is fragmented that available support in schools is limited. Therefore, it appears that the key challenges facing the services are recognised system wide. 6. Assessment of the current provision in line with the NICE Guidelines Disparity between the services for children diagnosed before or after the age of 11 is clear when compared to the NICE guidance. The NICE guidance emphasises that the service provision should be similar for all children and young people up to the age of 19. Other issues that emerged from the comparison are lack of formal arrangements for care co-ordination, and uneven access to psychiatric services. It is clear that both services recognise the importance of supporting the family and carers of a child and a young person with autism. However, available support is not consistent between, or, indeed, within services. 7. Identified gaps in the current service provision Results of the evaluation indicated that service gaps and improvement needs can be considered either on an individual service level or on population level, i.e. how do the autism services for children and young people (0-19) meet their needs relating to assessment, diagnosis, and support. However, before considering identified gaps in the service, it should be noted that both services have identified a number of areas that further service development is either needed or considered beneficial. Importantly, a number of the issues highlighted by service providers are similar to issues identified by parents of the service users. For the purposes of this section, service development refers to aspects of the services that already exist but could be improved, while service gaps refer to a lack of service or a service area that requires considerable input. Each identified service gaps is accompanied by brief assessment of risk Service gaps Disparity of service availability for different age groups Lack of support, intervention, and follow-up services for children aged Further, children over the age of 11 who have been diagnosed with ASD and discharged from ASD specific services cannot re-access the services. Associated risks: Diagnosis raises expectations of follow-up interventions. Lack of post-diagnosis support limits a child s ability to improve difficulties that led to diagnosis and thus worsen long-term outcomes such as educational achievement. Further, this increases the burden on other services and family carers. 11 P a g e

13 Lack of joint working between services Associated risks: Lose of information and experience. Waste of resources as work may be doubled. Service user frustration due to having to repeat their story over and over again. Potential to miss emerging behaviour patterns Return to services after discharge for short-term inventions Associated risks: Escalation of problems, which may worsen long-term outcomes such as educational achievement. Further, this increases the burden on other services and family carers Access to mental health services Associated risks: Escalation of mental health problems. Increased burden on other services and family carers. Education attendance may suffer, and isolation may increase Lack of social services involvement Associated risks: Potentially lost income and support Lack of single point entry and advice point across services Associated risks: Referrals sent to wrong service causing delays. Potential passing around services and wasting both service user and staff time. Delays in receiving advice Lack of clear understanding of whose responsibility is to provide additional support for educational settings. Associated risks: Schools unable to cope, class room disruption, risk of exclusion. Worse long-term outcomes due to disrupted education. Although a number of service areas could be improved and further developed, it should be recognised that there are both practical and resource limitations of what can be achieved within services. Moreover, the above suggestions should be considered in conjunction of the whole ASD service provision in Suffolk. The results of the service review strongly indicated that unequal access to services and fragmented service provision place children and young people in situation where level of support is not determined by need, but by age and ability to identify support services. 8. Conclusions Services for those needing assessment, diagnosis and support for ASD in Suffolk (excluding Waveney) are fragmented with disparity of available services between age groups. The fragmentation of the services appears to result from commissioning arrangements that have developed over the time to meet the needs of under and over 18 populations groups. Furthermore, services themselves have evolved to meet the needs of population. NSFT service is a standalone service primarily for assessment and diagnosis, while the SCH provides age-specific ASD pathways, providing assessment diagnosis, and interventions. Although the NSFT service is largely compliant with its service specification, lack of interventions and longer term support for those over the age of 11 means unequal access to services and support. Thus follow up provision needs to be considered to meet the needs of those who have been diagnosed. The services provided for under 11 year olds are comprehensive, and tailored to individual needs. However, there are unresolved issues, such as service scope, between the service specification and the actual service provision, which needs to be revisited between the commissioners and service 12 P a g e

14 providers. Service outcomes for both services were lacking in clarity and specificity, and service specifications would benefit of more specific, measurable and achievable outcome expectations. It was not possible to evaluate whether there has been any changes in the service demand due to lack of pathway specific data for under 11 services. However, evidence suggested that the service is experiencing increasing demand. Increased demand appeared to be linked to growth in referrals to the ASD pathways, not in growth on population or prevalence of ASD. The over 11 service is a new service and has met its contractual assessment and diagnosis targets for 2014/2015. Service staff for both services felt that there is increasing pressure especially to SLT and OT interventions. 9. Recommendations Develop age inclusive ASD pathway/s for children under the age of 19 as per NICE guidance. Pathways do not need to be provided by a single service, but should offer equal access to services. Post diagnosis therapy provision to be embedded in pathways. Develop more robust care-coordination and use of care plans which links to multi-agency provision when and as required. Develop flexible pathways how children can re-access services for a short-term support after discharge, if e.g. school transition causes difficulties. Clarification of access criteria to mental health services and better cooperation with CAMHs. Services should have direct access to a social worker. Links and cooperation with schools should be developed so that school can receive advice on management of CYP with ASD. Service specification should be clear and outcomes specific, measurable and achievable. Robust condition or pathway specific data collection system should be developed. Joint working with partners, especially education needs to be revisited and common approach to be agreed. 13 P a g e

15 10. References 1. Foundation for people with learning difficulties. Autistic Spectrum Disorders (ASD). Accessed February 13, American Psychiatric Association. Autism Spectrum Disorders Accessed February 13, Mayo Clinic. Autism spectrum disorder Accessed February 13, The National Autistic Society. What is autism? Asperger-syndrome-an-introduction/What-is-autism.aspx. Accessed February 13, Baird G, Simonoff E, Pickles A, et al. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet. 2006;368(9531): doi: /s (06) Baron-Cohen S, Scott FJ, Allison C, et al. Prevalence of autism-spectrum conditions: UK school-based population study. Br J Psychiatry. 2009;194(6): doi: /bjp.bp Williams E, Thomas K, Sidebotham H, Edmond A. Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort. Dev Med Child Neurol. 2008;50(9): doi: /j x. 8. Brugha T, Cooper SA, McManus S, et al. Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey.; Emerson E, Baines S. The Estimated Prevalence of Autism among Adults with Learning Disabilities in England.; NICE. NICE Support for Commissioning for Autism. Manchester; Department for Education. Special educational needs in England. Spec Educ needs Engl January Accessed July 22, Taylor B, Jick H, MacLaughlin D. Prevalence and incidence rates of autism in the UK: time trend from in children aged 8 years. BMJ Open. 2013;3:e003219(10). doi: /bmjopen Taylor B, Jick H, Maclaughlin D. Prevalence and incidence rates of autism in the UK: time trend from in children aged 8 years. BMJ Open. 2013;3(10):e doi: /bmjopen Kohane IS, McMurry A, Weber G, et al. The Co-Morbidity Burden of Children and Young Adults with Autism Spectrum Disorders. PLoS One. 2012;7(4):e doi: DOI: /journal.pone Mouridsen SE, Brønnum-Hansen H, Rich B, IsagerTorben. Mortality and causes of death in autism spectrum disorders: an update. Autism. 2008;12(4): Schendel DE, Overgaard M, Christensen J, Hjort L, Vestergaard M, Parner ET. Mortality in Persons with Autism Spectrum Disorders: A Danish Population-Based Cohort Study. In: Conference: 2014 International Meeting for Autism Research.; American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-5) - Autism Spectrum Disorder. 5th ed. American Psychiatric Association; Frazier TW, Youngstrom EA, Speer L, et al. Validation of Proposed DSM-5 Criteria for Autism Spectrum Disorder. J Am Acad Child Adolesc Psychiatry. 2015;51(1):28-40.e3. doi: /j.jaac P a g e

16 19. Carpenter L. DSM-5 Autism Spectrum Disorder.; Tools/DSM-5(ASD.Guidelines)Feb2013.pdf. 20. Ambitious about autism. Ruled Out - Why Are Children with Autism Missing out on Education. Campaign Report London; Synapse. Autism spectrum disorders fact sheets Accessed March 5, Department of Education. Permanent and Fixed Period Exclusions from Schools in England: 2012 to 2013 Academic Year. Local Authority Tables, Schools in England. 23. Department of Education - Education Standards Analysis and Research Division. A Profile of Pupil Exclusions in England.; Thorpe P. Moving from primary to secondary school. Supporting pupils with an autism spectrum disorder. Natl Autistic Soc. Accessed March 6, Steady A, Roberts R. Supporting transitions from primary to secondary school for pupils on the autism spectrum. Accessed March 6, Hare DJ, Gould J, Mills R, Al. E. A Preliminary Study of Individuals with Autistic Spectrum Disorders in Three Special Hospitals in England.; Scragg P, Shah A. Prevalence of Asperger s Syndrome in a secure hospital. Br J Psychiatry. 1994;165: Soderstrom H, Sjodin AK, Carlstedt A, Forsman A. Adult psychopathic personality with childhood-onset hyperactivity and conduct disorder: a central problem constellation in forensic psychiatry. Psychiatry Res. 2004;121(3): King C, Murphy GH. A Systematic Review of People with Autism Spectrum Disorder and the Criminal Justice System. J Autism Dev Disord. 2014;44(11): UK Government. Policy Paper Think Autism : An Update to the Government Adult Autism Strategy.; P a g e

17 Appendix 1: Service Specification Discussion During the discussions between service commissioners and service providers it emerged that there was a lack of consensus regarding the accurateness and depth of the service specification for under 11 services. Although it is not within the scope of this service review to provide a detailed analysis of the service specification for under 11 services, this discussion aims to identify the key issues in the current service specification. The service specification for 11 to 17 year olds is considered to be descriptive of the service, but there are concerns regarding the service outcome expectations. Therefore, for the 11 to 17 years old service, short commentary of the service outcomes is provided. It should be remembered that the purpose of these analyses is not to recommend any specific changes to the CCGs. Instead, the analyses aim to highlight issues and observed problems in the service specifications that may influence the quality and accurateness of the descriptions, but also of service outcome expectations Service specification for 0-11 service The specification for the autism service is embedded in the psychological therapies service specification. It is felt that this causes a number of difficulties. There is no autism service as such, but pathways for pre-school and primary school age children needing assessment, diagnosis, and interventions relating to ASD. Although the service specification mentions ASD pathway and the involvement of a transdisciplinary multi-disciplinary team, the role of paediatricians in assessment and care coordination is not clearly stated. The service specification recognises the role of psychology services in providing assessment, diagnosis, and intervention for children with complex needs. However, the role of SLTs, Health Visitors, and Specialist Nurses is not recognised. There is a considerable confusion regarding the age criteria for children eligible for the service. According to the service specification the service is aimed at 5-14 year old children in mainstream schools. However, the current service provides the following: o Preschool pathway for children aged 0-4 o School age pathway for children aged 5-11 o Services are offered for children in mainstream or special school o No new referrals are accepted after a child s 11 th birthday o However, if diagnosed before the age of 11, a child can stay with the services if required by medical needs. The service provider feels that limiting the service as described in the service specification would prevent younger children for accessing the service. Further, limiting the service to over five year olds may not have been practical, as younger children with autism could still access separate service parts, such as Community Paediatricians, SLT or OT. This could potentially have led to fragmented care for those under five. Another issue identified within the current service specification are the quality and outcome indicators. These indicators are on high-level and do not allow for pathway or diagnosis specific identification of children. Furthermore, not all of the indicators are applicable to the ASD pathways (e.g. transition to adult services), and other are difficult to quantify and measure (e.g. evidence of innovation). 16 P a g e

18 Clearly defining or clarifying the following points in future service specification may improve the autism service description; Defining referral pathways to the service Defining the entry points to the service (i.e. age group of children eligible for the service) o Currently the service offer pre-school and (primary) school age pathways Better description of the assessment and diagnosis processes o Multidisciplinary process (usually not before the age of 2 ½ years) o Use of questionnaires to gather information o Professional involved in assessment for different pathways Support / interventions after diagnosis o Range and length of services offered after diagnosis based on assessed individual needs o Available support for parents / carers / siblings Service offers support for child with ASD after the age of 11 if medically indicated and originally diagnosed by SCH o Children in special schools receive support after the age of 11 Expectations from the Service o Indicative number of referrals per year for the autism pathways o Indicative case-load for the autism pathways o Case coordinator arrangement (role of community paediatricians) Discharge from Services Discharge from services after diagnosis and conclusion of agreed support / no further identified support needs o No self-referral back to the service after discharged o No further support after discharge Extent and need for any out-reach work (e.g. referrer education, working with schools) Key Performance Indicators / Service Quality Indicators Any future service specification development work may wish to consider developing more pathway specific service indicators. Although the list below is not meant to be exhaustive or descriptive, collecting this type of data would enable better understanding of the service demand, performance, and potential pressures. Number of referrals (age, gender) Referral source and location Number of referrals accepted to the pathways Number of diagnosis Number of children referred / transferred to other pathways offered by the service Length of time between referral and the start of assessment Length of time between diagnosis and start of agreed support / interventions Number of contacts with different professionals Type of contact e.g. one to one, professional meeting, time used in evaluating questionnaires 17 P a g e

19 Number and type of complaints Service user feedback Service outcomes The service specification may also benefit from pathway specific outcomes. The service specification for the 11 to 17 year old lists a number of outcomes that could be adapted for the purposes of under 11 ASD pathways. In addition, having similar outcome requirements between the services may improve the service alignment. In the list below are suggestions of adapted outcome for the under 11 ASD pathways. It should be noted that not all outcomes can be measured or quantified by the service, such as involvement with criminal justice system. Children and their families / carers receiving an ASD diagnosis have a good understanding of ASD and how it affects them and their lives Children and their families / carers not receiving an ASD diagnosis have a good understanding of why The service ensures that children and their families / carers understand before the start of the assessment process the implications of diagnosis For those diagnosed with an ASD, a written care plan is provided. Care plan is shared with all those involved in providing support to the child and their family / carers Children are socially included, e.g. schools Fewer Children and Young People with autism come into contact with the criminal justice system Service children and their carers will be satisfied with the service they receive Children and Young People with autism and their carers/parents are involved in local service planning Children and Young People with a dual diagnosis (e.g. ADHD, learning disabilities) will be able to access the services Local authorities, health, education and social services know how many Children with autism live in the area A clear and trusted diagnostic pathway is available locally Improved education and understanding of autism by education, health, and social services Supporting primary and secondary services to improve appropriate management of Children with autism and coexisting medical conditions Better understanding of prevalence of autism and local data Better understanding and awareness of all staff for autism Service specification for service The service specification for the 11 to 17 year olds is based on the service specification of the adult services (over 18). Although the service specification is felt to be describing the service structure and provision well, concerns were raised regarding the service outcomes, and performance and quality indicators. The service providers expressed concern that the service does not have a direct influence over a number of outcomes, such as housing and school exclusion. It appears that a number of the service outcomes are developed from the NICE guidance (XX), and though important, refer more to 18 P a g e

20 the system wide model of care rather than the legally enforceable core functions of the service. This, of course, does not mean that the service does not contribute towards system wide outcomes, but the influence the service has to issues such as housing and employment is indirect through diagnosis and support within the service resources. In the list below are inserted comments regarding each of the outcomes. General Outcomes Children and Young People should shape the services to capture their voice and needs enabling a flexible autism service o This is done through service user feedback Provide pre-assessment counselling, assessment and diagnosis of Children and Young People o Service specific outcome (repeated in the list below) Enable the improved psychological and mental wellbeing of Children and Young People and their parents and carers in Suffolk in the short-term, and in order to reduce use of health and mental health services in the long-term o This is a system wide outcome - difficult to quantify and measure to which extent the service has achieved this Help empower people with autism to lead a fulfilling life living as independently as possible o This is a system wide outcome - difficult to quantify and measure to which extent the service has achieved this Improve the educational attainment and access to further education or vocational studies and reduce the number of experiences of educational placement breakdown for school/higher education aged service users o This is a system wide outcome to which the service has no direct influence Improved communication with leisure and travel providers o This is a system wide outcome to which the service has no direct influence o Unclear whose communication should be improved o Potentially ASD training with providers - However, this requires resources Improve access to work opportunities and improved numbers in appropriate settled employment o This is a system wide outcome to which the service has no direct influence Improve access to appropriate living environments o This is a system wide outcome to which the service has no direct influence Improved referral protocols to access Community Care assessment and Carers Assessments o Not considered within the service remit as currently described o Service sign-posts carers to social services Improve partnership working with social services, education and health to enable joint assessments and interventions o This is a system wide outcome, currently not resourced Improved dialogue with Criminal Justice System to address re-referral rates o Not considered within the service remit as currently described Reduce the number of people who have undiagnosed ASDs and, therefore, need for late diagnostic services over time o Service specific outcome 19 P a g e

21 Provide evidence based psycho-educational interventions to maintain the psychological wellbeing of the person with autism and their family carers. o Service specific outcome o Short-term interventions for service users, limited provision for family / carers Deliver improved psychological and mental wellbeing through access and improved access to treatment for any coexisting mental disorders, including psychological and pharmacological interventions o Referral / joint working with CAMHs Although the outcomes below are titled as the general outcomes, they actually describe service specific outcomes in more details. Comments are inserted in the list below. Ensure that children and their families who receive a diagnosis have a good understanding of ASD and how it affects them and their lives o Service specific outcome This is a new service and the annual demand is not known, The Provider shall use their resources effectively and efficiently to accept at least 180 referrals per annum. As this is a new service this target shall be reviewed after 6 months. o Service specific outcome Service users will receive pre-assessment counselling so they understand the implications of diagnosis and can make an informed choice re assessment o Service specific outcome (repeated in list above) Where a diagnosis is deemed appropriate, written feedback will be provided to the individual concerned and his/her carers, and will include an analysis of strengths and needs and recommendations. These will be shared with all those agencies involved in providing support to the individual, to facilitate the improved psychological well-being of the individual and access to the support they need. o Service specific outcome Service users and their carers will be satisfied with the service they receive o Service specific outcome Children and Young People are socially included, economically active and have access to work, vocational and leisure opportunities where appropriate o This is a system wide outcome - difficult to quantify and measure to which extent the service has contributed People with autism are living in quality accommodation with support that meets their needs o This is a system wide outcome - difficult to quantify and measure to which extent the service has contributed Young People with autism are benefiting from the personalisation agenda in health and social care, and can access personal budgets o This is a system wide outcome - difficult to quantify and measure to which extent the service has contributed Fewer Children and Young People with autism come into contact with the criminal justice system o This is a system wide outcome - difficult to quantify and measure to which extent the service has contributed 20 P a g e