Autism Joint Commissioning Strategy Southampton. April 2015 March 2020

Transcription

1 Autism Joint Commissioning Strategy Southampton April 2015 March

2 Contents 1. Introduction 2. Definitions 3. Current needs information for Southampton 4. Timeframe 5. Local Vision and Scope 6. Governance 7. Policy Context 8. Autism self-assessment 2014/15 9. Service User, family/carer and stakeholder consultation 10. Priorities for Southampton 11. Next steps 12. References Appendices 1. Autism Pathway 2. Implementation Plan 1. Introduction Southampton s first Autism Strategy was written in 2012 for the period April 2012 to March This document refreshes the strategy at an opportune time due to the publication in 2014 of Think Autism an update to the 2010 national autism strategy, Fulfilling and Rewarding Lives. The update restated the same vision and direction of travel from the 2010 strategy. In addition, in 2015 there will be changes made to Children s services locally due to the Children and Families Act, 2014, and the Care Act 2014 will be implemented (the go live date is set for April 2015). This document highlights progress to date and details Southampton s priorities for the next five years. In this document, the term Autism reflects the full spectrum and includes the diagnostic categories of Asperger s Syndrome, High Functioning Autism, Pervasive Development Disorder, Autism Spectrum Disorder (ASD) and Autism Spectrum Condition. It includes people with, and without a learning disability. 2. Definitions Autism was first recognised as a distinct condition in the 1940 s. Since then research has improved our understanding of the condition and numerous theories have been put forward as to its causation, including theories about genetic links, but as yet no definitive cause has been found and there is no cure. The national autism strategy for adults Fulfilling and Rewarding Lives defined autism as: a lifelong condition that affects how a person communicates with, and relates to, other people. It also affects how a person makes sense of the world around them. 2

3 Autism is known as a spectrum condition because of both the range of difficulties that affect people with autism and the way it presents in different people. In the 1970 s the symptoms were described as a triad of impairments (Wing 1976): Social communication, e.g. problems using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice Social interaction, e.g. problems in recognising and understanding other people s feelings and managing their own Social imagination, e.g. problems in understanding and predicting other people s intentions and behaviour and imagining situations outside their own routine. In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM- 5, American Psychological Association), the triad was reduced to two core dimensions: Social communication difficulties, which incorporates both communication and social interaction as these are intertwined. Strongly repetitive behavior (e.g. difficulties in adapting to change and unusually narrow interest). In addition people with autism may experience some form of sensory sensitivity or under-sensitivity to sounds, touch, tastes, smells, light or colours; they often prefer to have a fixed routine and can find change difficult to cope with. However every person s experience of autism is unique to each individual who will have a range of strengths as well as needs. Asperger s Syndrome is also a form of autistic spectrum disorder affecting people of average or above-average intelligence, who typically have fewer problems with speaking than others on the autistic spectrum; but do still have significant needs with communication that can be masked by their ability to speak fluently. People with autism are often stigmatized and this can cause barriers in accessing services. It is estimated that more than half a million people in England have autism. This is equivalent to more than 1% of the population and similar to the number of people that have dementia. The impact of autism is far reaching on individuals, families and society as a whole. 3. Current Needs Information For Southampton Southampton s 2014 ONS mid-year population estimate was 245,290. Based on a raw prevalence of 1%, approximately 2,453 people in the city will have an ASD. As detailed in the table below these number 577 from birth to 19, and 1,876 aged 20 and above. Age Population ASD (1%) , ,

4 , , , , , , , , , , , , , , , , , Total 245,290 2,453 N.B. Southampton has a large number of students in the year age band and it is possible that the rate of ASD among university students may be lower than the general population, but to date this has not been statistically explored. Children It is not possible to provide data for the number of children and young people up to the age of 25 who may have been diagnosed with Autism before April 2013, when the city s Child and Adolescent Autism Service commenced. At that time there was no single database that recorded those who had been diagnosed with Autism, however information from the Jigsaw service and education databases (in the table below) suggested that only 266 birth to 19 year olds had been diagnosed with Autism in Southampton before April This was 50% less than the expected number of 532 given the prevalence rates. This varied according to age bands with the main gaps being in the birth-4 and age groups. These particular 4

5 gaps were not unexpected as diagnosis below the age of 3 was rare and for those aged years it is likely that when this group were young children there was less awareness of Autism and they would therefore not have been referred for diagnosis. The table below reflects the position in October 2011: Age Group Predicted Autism (1%) Number diagnosed with Autism Number as a % of predicted % 77% % 11% % 18% % 71% Total % % undiagnosed In the period between the Child and Adolescent Autism Service commencing in April 2013 up to March 2015, 183 children and young people (34 females and 149 males) have been diagnosed with Autism (including Asperger s), the age groups are as follows: 0 to 5 years 86 diagnoses 6 to 10 years to 15 years to 18 years 10 Total 183 In addition the number of children identified with ASD who have an Education, Health and Care (EHC) plan or statement is currently 220 which gives a total of 403. This number reduces to 374 as 29 children diagnosed after April 2013 are also on the Special Education Needs EHC list). This represents 70% of the expected prevalence. Data from GP clinical systems show that 70 children up to the age of 17 are recorded as having an ASD. Adults Since the Adults Assessment and Diagnosis Service commenced in April 2013, 84 assessments have been completed and 54 adults have been given an autism diagnosis (i.e.3% of the expected prevalence). Data from GP clinical systems show that 120 people aged 18 and over are recorded as having an ASD, with only 4 of these being aged 65 and above. In November 2014 there were 286 people with an ASD recorded on Paris, Southampton City Council s Social Care recording system (i.e.12% of the expected total). 116 are aged under 18 and 170 are aged 18 or over. This showed a large increase of 140% from the number of people (119) that were recorded on Paris in Of the 286 people recorded on Paris 234 are allocated to a social care team (82%), 202 (71%) have had an assessment within the last year, 37 (13%) have had an adult joint/carers assessment in the last year, and 10 (3%) have had an adult carers needs assessment in the last year. 5

6 Of the 170 adults, 121 have a care plan (71%), 119 (70%) are receiving self-directed support, and 21 (12%) are receiving direct payments. There are therefore now systems in place to capture data for both adults and children diagnosed with autism. However there is no GP autism register (The figures above from GP clinical systems are obtained due to GP s recording various codes against their patients). In addition the various sources of data use different age bandings which makes correlation difficult. What we will do: We will therefore work with CCG and other colleagues to address this and seek to create a GP s autism register in addition to the data collected both by the commissioned services and also recorded on SCC s social care information system. National statistics from the Foundation for People with Learning Disabilities: The prevalence rate of autistic spectrum conditions is higher in men (2%) than women (0.3%) % of people who have an autistic spectrum condition will also have a learning disability. The prevalence of autism increases with greater severity of learning disability or lower verbal IQ % of single men have an autism spectrum condition Autism spectrum conditions are associated with educational qualification. The rate is lowest among those with a degree level qualification (0.2%) and highest among those with no qualifications (2.1%). The likelihood of a positive assessment for an autism spectrum condition varies with tenure and the level of deprivation in the local area. Those living in accommodation rented from a social landlord were the most likely to have an autism spectrum condition. This is strongly evident among men - 8.0% of men in social housing are identified with an autism spectrum condition (Autism Spectrum Disorders in adults living in households throughout England, a survey carried out for The NHS Information Centre for health and social care, 2007). o Southampton has high levels of social landlord tenancies and significant levels of tenants in supported housing have an autism diagnosis (see details under priority challenge 14 below). The National Autistic Society has identified the following from a range of research projects: While autism is incurable, the right support at the right time can make an enormous difference to people's lives. 2 Over 40% of children with autism have been bullied at school 3. One in five children with autism has been excluded from school (many more than once) 4. Nearly two-thirds of adults with autism in England do not have enough support to meet their needs 5. 6

7 At least one in three adults with autism are experiencing severe mental health difficulties due to a lack of support 6. Only 15% of adults with autism in the UK are in full-time paid employment 7. 51% of adults with autism in the UK have spent time with neither a job, nor access to benefits. 10% of those having been in that position for a decade or more 8. 61% of those out of work say they want to work 9. 79% of those on Incapacity Benefit say they want to work 10. In addition, evidence suggests that parents and carers of children and adults with autism have a higher rate of emotional and mental illness as well as poorer general health 11 than the general population. Studies have also looked at the economic impact autism has, including the work done by Knapp et al 12 in 2009 which estimated that: The aggregate national costs for adults amounted to 25 billion each year of which 59% is accounted for by services, 36% by lost employment for the individual with autism, and the remainder by family expenses. The aggregate national costs of supporting children with autism are 2.7 billion each year - most of this cost being accounted for by services used. The lifetime cost for someone with high-functioning autistic spectrum disorder was found to be 3.1 million, and 4.6 million for someone with lowfunctioning autistic spectrum disorder. In 2009 the National Audit Office published a model to assess the financial impact of providing multi-disciplinary support services for adults with high-functioning autism /Asperger s Syndrome. The report Supporting People With Autism Through Adulthood, predicted that if specialist services can identify and support 4% of the estimated total number of adults with high-functioning autistic spectrum disorder, then the costs of the service offered are likely to be balanced by savings made to the public purse. This excludes any savings that might accrue to the criminal justice system. 4. Timeframe The timeframe covered by this refresh of the Autism Joint Commissioning Strategy is April 2015 to March A detailed implementation plan will be developed that will include an annual review. 5. Local Vision and Scope The national vision for adults with autism was expressed in the strategy Fulfilling and Rewarding Lives. It was not altered in the 2014 national update and has been adopted as the local vision but widened in scope to include children and young people as well as adults. The local long-term vision is therefore that: All children, young people and 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 7

8 mainstream public services to treat them fairly as individuals, helping them make the most of their talents. The scope of the Southampton strategy includes: Children from birth through to adults of all ages who have autism and live within the boundaries of the city of Southampton. In addition, the health aspects of the related work will extend to those who are registered with a Southampton GP regardless of residency. Children or adults who are currently not resident within the city but for whom the local authority or Southampton City Clinical Commissioning Group are the responsible commissioner, i.e. those on out of area placements. The parents and carers of those with autism who meet the criteria above. Southampton s vision and scope were validated by those that attended two consultation workshops held in the summer of Governance Fulfilling and Rewarding Lives suggested that local partners, consider establishing an autism partnership board that brings together different organisations, services and stakeholders locally and sets a clear direction for improved services This is also a feature of the NICE guidance: Autism Spectrum Disorders in Children and Young People, September 2011, which states that, Local autism multi-agency strategy groups should be set up with managerial, commissioner and clinical representation from child health and mental health services, education, social care, parent and carer service users, and the voluntary sector. In 2013 a Southampton Autism Strategy Group was established. Its original terms of reference and attendees are being reviewed in 2015, with the following being proposed as its six main objectives: To oversee the delivery of the Southampton City Autism Joint Commissioning Strategy and monitor progress against the priorities and desired outcomes; prioritising activity as necessary. To receive feedback from and give direction to the Autism Operational Forum. Feedback on progress will be presented at each quarterly Strategy Group meeting. To work in partnership with providers and other stakeholders to identify and address any gaps/improvements required in the Autism Pathway To make appropriate links to the Hampshire County Council Autism Strategy Group to ensure that both groups are kept informed of progress. To keep abreast of national developments, initiatives and best practice to ensure that local priorities meet national requirements. To ensure that the needs of those living in Southampton who are impacted by Autism continue to be met. The terms of reference are reviewed annually, and the Integrated Commissioning Unit are committed to sustain the group for the term of the strategy. 7. Policy Context 8

9 7.1 National Policy in relation to children and young people. There are a range of policy documents that apply to children and young people with autism, with the most relevant and recent being: The Children and Families Act, 2014 In March 2014, the Children and Families Bill became the Children and Families Act. Part Three of the act - Children and Young People in England with Special Educational Needs and Disabilities (SEND), places duties on local authorities to put in place new arrangements, services and processes. The act built on Support and Aspiration: a new approach to special educational needs and disability - progress and next steps (May 2012), which set out the steps the Government was taking to achieve a new approach to integrated support for children with special educational needs and disabilities, and renewed the Government's commitment to deliver: A single assessment process which is more streamlined, better involves children, young people and families and is completed quickly An Education, Health and Care Plan which brings services together and is focused on improving outcomes A local offer of services and can offer a personal budget covering SEN provision for children with an Education, Health and Care Plan. In addition, the Government pledged that it would: Require that local authorities and health services jointly plan and commission services that children, young people and their families need Give greater control to disabled children and young people themselves - to make them 'authors of their own life stories'. National Institute for Health and Clinical Excellence (NICE) guidance: Autism: The management and support of children and young people on the autism spectrum (CG170), published August 2013 This guidance summarised the different ways that health and social care professionals can provide support, treatment and help for children and young people (from birth until their 19th birthday) with autism, and their families and carers. It offered best practice advice on the following key priorities: o Ensure that all children and young people with autism have full access to health and social care services, including mental health services, regardless of their intellectual ability or any co-existing diagnosis. o Health and social care professionals in any setting should receive training in autism awareness and skills in managing autism. o Making adjustments to the social and physical environment and processes of care. Minimise any negative impact by making reasonable adjustments or adaptations, including processes (e.g. arranging appointment times, providing single rooms). Consider a specific social-communication intervention that includes play-based strategies with parents, carers and teachers to increase joint attention, engagement and reciprocal communication in the child or young person. 9

10 o Assess factors that may increase the risk of behaviour that challenges in routine assessment and care planning, including: impairments in communication, co-existing physical disorders and mental health problems. o Offer families (including siblings) and carers an assessment of their own needs. o For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) as an aid to the transition between services. Involve the young person in the planning and, where appropriate, their parents or carers. Autism diagnosis in children and young people (CG128), published September 2011 This guidance identified a number of key features for service development, summarised in the following recommendations: o Local autism multi-agency strategy groups should be set up with managerial, commissioner and clinical representation from child health and mental health services, education, social care, parent and carer service users, and the voluntary sector. o The strategy group should appoint a lead professional to be responsible for the pathway for recognition, referral and diagnosis o In each area a multidisciplinary autism team' should be formed. This group should include a paediatrician and/or child and adolescent psychiatrist, a speech and language therapist and a clinical and/or educational psychologist. There should be a single point of contact to access the multidisciplinary autism team. o For each child who has an autism diagnostic assessment, a case coordinator should be identified. o Every autism diagnostic assessment should include an assessment of social and communication skills and behaviours through interaction with and observation of the child or young person and consideration of any co-existing conditions. o A profile of the child's or young person's strengths, skills, impairments and needs should be developed during their assessment. With consent, this profile can be shared with those involved in the child's education to help ensure the assessment will contribute to the child or young person's individual education plan and needs-based management plan. 7.2 National Policy in relation to adults. The Autism Act 2009 was the first ever disability-specific law in England and led to two key developments - a national strategy and statutory guidance. The strategy was produced in 2010 entitled Fulfilling and Rewarding Lives and was updated in April 2014 with Think Autism Fulfilling and Rewarding Lives, the strategy for adults with Autism in England: an update. It was not a replacement for Fulfilling and Rewarding Lives, but it restated the same vision and 10

11 direction of travel from the 2010 strategy. A review of the 2010 strategy took place in 2013/14 and from it fifteen priority challenges for action were identified by people with autism, carers, professionals and others who work with people with autism in order to see further change. In addition, the update announced revenue and capital funding to support the delivery of some of the key themes, including local innovation and awareness. Part of which was a time-limited Autism Innovation Fund to help drive creative and cost effective solutions, and identify new models of good practice that could be replicated. What we will do: The 15 Priority Challenges for Action are being adopted as Southampton s priorities for the next five years. They are listed in the priorities section together with feedback and comments we received from consultation events held in Southampton in National Institute for Health and Clinical Excellence (NICE) guidance: Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (CG142), Published June 2012 This guidance identified a number of key priorities for implementation: o All staff working with adults with autism should work in partnership where appropriate, with their families, partners or carers o the local autism multiagency strategy group should include representation from managers, commissioners and clinicians from adult services, including mental health, learning disability, primary healthcare, social care, housing, educational and employment services, the criminal justice system and the third sector. There should be meaningful representation from people with autism and their families, partners and carers. o Consider assessment for possible autism when a person also has other factors, for example, problems in obtaining or sustaining employment or education, difficulties in initiating or sustaining social relationships, previous or current contact with mental health or learning disability services o Consider an individual supported employment programme where appropriate. o The strategy group should be responsible for developing, managing and evaluating local care pathways and should appoint a lead professional responsible for the pathway. o The aims of the strategy group should include developing clear policy and protocols for the operation of the pathway, ensuring the provision of multiagency training, making sure the relevant professionals are aware of the pathway and how to access services, supporting the smooth transition to adult services, and auditing and reviewing the performance of the pathway. 7.3 Other policies and legislation that apply to autism include: Disability Discrimination Act (2005) Access to Work (2007) a specialist disability programme delivered by Job Centre Plus 11

12 Aiming High for Disabled Children (2007) Carers at the Heart of 21 st Century Families and Communities (2008) Creating Strong, Safe and Prosperous Communities (2008) High Quality Care for All (2008) Building Britain s Recovery: Achieving Full Employment (2009) The Bradley Review (2009) (of people with mental health problems or learning disabilities in the criminal justice system) Valuing People Now strategy for learning disabilities (2009) o The Delivery Plan (2010) Equality Act (2010) No Health without Mental Health (2011) Care Act (2014). 8. Autism self-assessment 2014/15 The purpose of the annual national self-assessment (which is in relation to adults only) is to enable local authorities and strategy groups to review their progress and support future planning. It includes the priorities set out in the Think Autism update to the national Autism Strategy, and the emerging themes that feature in the statutory guidance for Local Authorities and the NHS. It builds on the second self-assessment exercise that looked at what progress had been made by September For some questions there was a RAG rating system so that local authorities could score progress in various areas, highlighting successes or what may be stopping progress. It also gave the opportunity to highlight examples of local innovative approaches. The return contained 56 questions, some of which focused on basic information and data, others required case studies and self-advocates own experiences. The questions were reflective of the 15 Priority Challenges for Action detailed in Think Autism. Local Authorities were tasked with the consolidation of the return as the lead body locally working with key partners such as health/ccg and obtaining sign-off. The responses were returned to the Department of Health in early March 2015 and were agreed by the local Strategy Group and validated by local people who have autism. 9. Service User, Family/Carer and Stakeholder Consultation In light of guidance from the Department of Health and in order to refresh the local strategy, two consultation workshop events were held in Summer 2014 in order to find out from service users, families, carers, advocates, professionals and wider stakeholders how the city is progressing in respect to its approach to supporting people that have (or may have) an Autistic Spectrum Condition. 12

13 The workshops were themed around the 15 Priority Challenges for Action which were detailed in Think Autism Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update (April 2014), and gave attendees the opportunity to comment on the priority challenges in respect to Southampton. The feedback was put into a document which was circulated widely to various networks in order to obtain more views. The section below contains a summary of the views and feedback received that will inform future implementation plans. 10. Priorities for Southampton Many of the objectives from the previous strategy have been met by the implementation of the following: The new service model for assessment, diagnosis and support of ASD o which will be monitored to ensure compliance with NICE guidelines o diagnostic pathway Governance via Local Strategy Group (which meets quarterly) Operational Pathway Group (which meets quarterly) The online Local Autism Directory (LAD). The 15 Priority Challenges for Action are being adopted as Southampton s priorities for the next five years. They are listed below and for ease some of the challenges have been grouped together due to their synergies. An equal part of my local community 1. I want to be accepted as who I am within my local community. I want people and organisations in my community to have opportunities to raise their awareness and acceptance of autism. 2. I want my views and aspirations to be taken into account when decisions are made in my local area. I want to know whether my local area is doing as well as others. 3. I want to know how to connect with other people. I want to be able to find local autism peer groups, family groups and low level support. 4. I want the everyday services that I come into contact with to know how to make reasonable adjustments to include me and accept me as I am. I want the staff who work in them to be aware and accepting of autism. 5. I want to be safe in my community and free from the risk of discrimination, hate crime and abuse. 6. I want to be seen as me and for my gender, sexual orientation and race to be taken into account. The right support at the right time during my lifetime 13

14 7. I want a timely diagnosis from a trained professional. I want relevant information and support throughout the diagnostic process. 8. I want autism to be included in local strategic needs assessments so that personcentred local health, care and support services, based on good information about local needs, is available for people with autism. 9. I want staff in health and social care services to understand that I have autism and how this affects me. 10. I want to know that my family can get help and support when they need it. 11. I want services and commissioners to understand how my autism affects me differently through my life. I want to be supported through big life changes such as transition from school, getting older or when a person close to me dies. 12. I want people to recognise my autism and adapt the support they give me if I have additional needs such as a mental health problem, a learning disability or if I sometimes communicate through behaviours which others may find challenging. 13. If I break the law, I want the criminal justice system to think about autism and to know how to work well with other services. Developing my skills and independence and working to the best of my ability 14. I want the same opportunities as everyone else to enhance my skills, to be empowered by services and to be as independent as possible. 15. I want support to get a job and support from my employer to help me keep it. The following pages list each Priority Challenge, together with Southampton s progress to date What we were told re unmet needs and gaps What we will do/consider Which section of the separate Implementation Plan contains the key actions. 14

15 Priority Challenge 1 I want to be accepted as who I am within my local community. I want people and organisations in my community to have opportunities to raise their awareness and acceptance of autism. Southampton progress to date: A local autism training strategy was approved by the Autism Strategy Group in November Training sessions to social care providers have been delivered as a train the trainer model. This resulted in 20 health and social care staff who can deliver/cascade awareness training. A SHIP (Southampton, Hampshire, Isle of Wight and Portsmouth local authorities) e-learning autism awareness training is in place. Data has been difficult to obtain re the numbers of people from Southampton that have completed this training. Positive comments were posted by 9 SCC staff, 8 people from partner agencies (e.g. the DWP) and 8 staff from support providers. We have been advised that amendments made will make the data easier to collect in the future. A link to the e-learning awareness training has been sent to all staff within the Integrated Commissioning Unit (SCC and SCCCG staff). The training has been undertaken by many SCC customer-facing staff Obtaining data in respect to training accessed by schools is difficult as they access training and advice in different ways. Inspire provide the following centralised autism training for schools (51 delegates attended these courses in the year to 31 st March 2014): Understanding Autism Introduction to Autism in the Early Years Introduction to Including Pupils with Autism Including Pupils with Autism. Developing Play Skills in Children with Autism in Early Years is another course which is being delivered by Inspire in the current year (16 people attended in December 2014). What we were told re unmet needs and gaps: Awareness, information and training were vital recurring themes throughout the feedback given at the workshops. More work needed with individuals in understanding and accepting their condition to empower them to explain it to others. More work to be done to ensure that basic awareness is accessed and training provided. Autism awareness to be trained through the whole community for a better understanding of the condition. All of the following need to be included: o Doctors, dentists, health staff, social care staff (including care managers), Police, Fire Service, schools, colleges, universities, teachers, pupils, community groups, Job Centres, employers, retailers. Better education of children and staff in mainstream schools. 15

16 Increase training required for schools (not just the special needs teachers) so that other pupils are aware and help with reducing the bullying suffered, n.b. Autism Hampshire have been active in this area. Schools need to provide better support for pupils pre and post diagnosis. Promote information while family is on waiting lists. Promote successful people who have autism. Role models to be more positive about their strengths, not just focus on therapy/diagnosis. Promote services at places where parents go Doctors, CAMHS, schools, clubs, and hospital. Make use of videos to show how it feels to have autism, e.g. Rosie s Story and Carly Fleischman. Make use of personal communication passports. What we will do/consider: The link to the e-learning awareness training will be circulated widely in order to publicise it. Discussions are to be held with HR departments to include the e-learning as a minimum within induction training for staff. Create Bespoke information pack of what is available and where to find it pre diagnosis to aid understanding the information pack will be held on-line on the Local Autism Directory and the Southampton Information Directory A training guidance document covering adults and children will be circulated to all stakeholders and will give details of the following three levels of contact, the skills and knowledge required for each level, and who can provide the training: o Basic awareness training (for all) o Intermediate training (for people likely to have regular contact with individuals with autism) o Specialist training (for those who provide regular support for individuals with autism). Training will be embedded by being referenced in service specifications and contracts. Services need to monitor their own employees and cascade to other staff ensuring that the training has made a difference. Raising awareness, training, and having accessible information are key factors, and we must ensure that those previously listed are included. Continue the training given to Hampshire Police. People with ASD get involved with the Police as their behaviour can be challenging. Some Police officers are very understanding (example given in Portswood) but others, e.g. special constables appear not to have received training. A survey will be used to evaluate the amount and types of training being delivered, and how effective it is. ***PLEASE REFER TO THE KEY ACTIONS DETAILED IN THE SEPARATE IMPLEMENTATION PLAN UNDER THE SECTION TRAINING AND RAISING AWARENESS 16

17 Priority Challenge 2 I want my views and aspirations to be taken into account when decisions are made in my local area. I want to know whether my local area is doing as well as others. Southampton progress to date: Service users, families and carers were invited to participate in two consultation workshops held in 2014 The child and Adolescent assessment and diagnosis service (Solent NHS) has established a parent/carer focus group from attendees of the workshops Service users and families/carers attend the Learning Disability Partnership Board (held every 6 weeks) The commissioned services carry out consultation/evaluation exercises What we were told re unmet needs and gaps: Consult with people with autism maybe have a regular forum/ focus group. People with autism and their families to be involved in strategy development/decisions in the local area and to be informed about any changes in a way that they can understand (e.g. Easy Read). What we will do/consider: The terms of reference for the Local Strategy Group are to be reviewed in 2015 Consider service user/family representation on the Strategy Group/Operational Pathway Group Improve further the inclusion of service users and families in forums, meetings and consultation o Interested parties that attended the workshops have been identified and consideration will be given to inviting them to various strategy meetings. o High functioning people with Asperger s could be consulted directly Look at various communication channels, e.g. surveys/ use of social media /enhancements to be made to the Local Autism Directory (LAD) to aid communication and develop services. ***PLEASE REFER TO THE KEY ACTIONS DETAILED IN THE SEPARATE IMPLEMENTATION PLAN UNDER THE SECTION SERVICE USER CONSULTATION 17

18 Priority Challenge 3 I want to know how to connect with other people. I want to be able to find local autism peer groups, family groups and low level support. Southampton progress to date: Support groups/peer links are growing There are many sources that can inform people about support groups, peer groups and services, e.g. Autism Hampshire and the LAD. The on-line LAD which is funded by the SHIP authorities and 8 CCG s was launched in November It is a one-stop-shop of information covering children and adults and aims to connect the autism community, professionals, employers and service providers and help them access autism information all in one place. Users have fed back suggested improvements which are currently being actioned. The LAD will benefit from receipt of further funding from each SHIP authority via the Department of Health Autism Innovation Fund Capital Investment Grant. It will be used to add a message board, search improvements and a feedback facility in 2015 Information re the Autism Hampshire support service has been passed to the GP portal/health staff newsletter. What we were told re unmet needs and gaps: Publicise groups on Council/other websites. Need a strategic long-term approach to advice and information that coordinates local provision. Bids for tenders and grants should require providers to demonstrate ASD awareness/sensitivity and minimum quality standards. More life skills support for adults with higher functioning autism. Front-line workers and agencies to have better knowledge of what services are available so that they can promote them. More youth groups for children with ASD and to mix them with non-disabled children. Also give consideration that children with ASD need to be around those of their own age. Because of bullying (by both pupils and teachers) some children are only happy when attending such groups. What we will do/consider: Further information enhancements to be considered: Communicate what services are available via a variety of channels: o The information pack, the LAD and the Southampton Information Directory, ensuring that employment and housing are included. More information will be placed on the GP Portal/health staff newsletter to increase awareness of autism and services available ***PLEASE REFER TO THE KEY ACTIONS DETAILED IN THE SEPARATE IMPLEMENTATION PLAN UNDER THE SECTION ACCESSIBLE INFORMATION 18

19 Priority Challenge 4 I want the everyday services that I come into contact with to know how to make reasonable adjustments to include me and accept me as I am. I want the staff who work in them to be aware and accepting of autism. Priority Challenge 6 I want to be seen as me and for my gender, sexual orientation and race to be taken into account. Southampton progress to date: Reasonable adjustments, including for people on the autistic spectrum, are included in some service-specific strategies and policies such as the Housing Strategy for People with Learning Disabilities. In addition, many SCC customer-facing staff have undertaken the autism e-learning awareness training. This should have helped to raise awareness and improve access and support for people with autism. The support service provides support around autism-specific reasonable adjustments to mainstream services. Work done with the police has had a positive impact for both officers and the public by raising awareness and how to deal with people. What we were told re unmet needs and gaps: More written anti-stigma information should be available and easily accessible. Autism should not be a label. Beyond an autistic person there is an individual with a personality, gender, sexual orientation. o Autism training/awareness should cover these needs. Consider developing an award for autism-friendly businesses promote awareness and raise quality of staff skills. Raising awareness of autism support services in other professionals, so they can be confident in their reasonable adjustments. Youth groups and primary age children need to be communicated with in order to reduce bullying and marginalisation. The council does not currently have a single policy covering its approach to reasonable adjustments Women have been overlooked by services/commissioners due to the prevalence data being lower than for males BME groups are under-represented in services (only 2 BME referrals have been received by the Adults Assessment & Diagnosis service since April 2013). The positive work done with the Police re training should be replicated in other services retail especially. What we will do/consider: Awareness/training are seen as key factors as in previous comments The Council is in the process of establishing a Strategy Unit, which will be responsible for reviewing and updating key strategies and policies, and this 19

20 issue has been raised with that unit. In addition, the need to develop equality impact assessment documentation to include specific reference to autism has been identified; this will ensure reasonable adjustments for people with autism are considered as part of any service review or change. Part of the Department of Health Innovation fund capital grant will be spent on improving the environment of libraries in the city. The commissioned Support service is considering the development of an autism training programme that highlights females with autism. We will link in with various services such as Autism Women Matter and Circles (who have an advice line re inappropriate sexual behaviour). The commissioned Support service will continue linking in with BME communities in the city to aid engagement. *PLEASE REFER TO THE KEY ACTIONS DETAILED IN THE SEPARATE IMPLEMENTATION PLAN UNDER THE SECTIONS REASONABLE ADJUSTMENTS AND HARD TO REACH GROUPS HOUSING 20

21 Priority Challenge 5 I want to be safe in my community and free from the risk of discrimination, hate crime and abuse. Priority Challenge 13 If I break the law, I want the Criminal Justice System (CJS) to think about autism and to know how to work well with other services. Southampton progress to date: Autism champions have been identified within the local criminal justice system to support frontline staff with day to day issues. There is excellent engagement with Hampshire Constabulary. Hampshire Police are in the process of writing an Autism Policy to support those within the organisation and externally. An easy-read criminal rights sheets for people with autism has been piloted. It is planned to roll this pilot out to all custody centres in Hampshire and the Isle of Wight, including Southampton and a date is awaited. The Autism Alert card (276 cards have been issued) and an application for mobile phones have been produced by Autism Hampshire with Hampshire police. The Hampshire Liaison and Diversion Service Project has a Learning Disability Sub Group which includes autism. The project is part of the new National Liaison and Diversion Development Programme and main bases of operation will be in Portsmouth and Southampton. What we were told re unmet needs and gaps: Based on research in the USA, the National Autistic Society reports that autistic people are on average seven times more likely than others to come into contact with the police, either as victims, witnesses or alleged criminals. Autistic adults are much more likely to be victims of crimes rather than to be criminals. Research suggests that a high proportion of prisoners have learning disabilities, mental disorder or substance abuse problems, so prison systems focus on those three issues rather than autism, which affects far fewer prisoners. As a result some people whose autism makes them uniquely vulnerable go through criminal justice experiences that they can barely, if at all, understand or cope with. More accessible Information is required for people going through the CJS. More work is required in engaging with the Courts and Probation services. Feedback from a focus group was that Police Autism Liaison Officers would be beneficial (n.b. there are Lesbian and Gay Police Liaison Officers). Explaining and teaching people about autism from a young age to aid their understanding when they may witness challenging behaviour. The Autism Alert card needs to be recommended by professionals more to enable more people to benefit. 21

22 What we will do/consider: Continue to raise awareness/training amongst police staff. Hold more events with Police to break down barriers between individuals and authority, e.g. visit groups for people with autism to get first-hand experience around communication etc. supporting to report Hate/Mate crime. Engage more with the Courts and Probation services. Link in with the new Hampshire Liaison and Diversion Service. *PLEASE REFER TO THE KEY ACTIONS DETAILED IN THE SEPARATE IMPLEMENTATION PLAN UNDER THE SECTION CRIMINAL JUSTICE SYSTEM 22

23 Priority Challenge 7 I want a timely diagnosis from a trained professional. I want relevant information and support throughout the diagnostic process. Priority Challenge 12 I want people to recognise my autism and adapt the support they give me if I have additional needs such as a mental health problem, a learning disability or if I sometimes communicate through behaviours which others may find challenging. Southampton progress to date: The new service model was put in place in 2013, comprising both an adults & child and adolescent assessment and diagnosis service, and a support service Professionals advised that diagnosis for adults and children has greatly improved. There is a clear pathway and shorter waiting times compared to the rest of Hampshire, and that early advice/diagnosis is cost effective by saving public money later re health services/criminal justice The support service (for adults and children) is delivered by Autism Hampshire s Community Access team to provide a support service for the Southampton population. It is open access and provides the service to a wide range of local people with autism, their families and professional contacts by: o Providing information, advice and guidance o Raising autism awareness in the community o Developing community projects to support people with autism. The information is provided pre, during and post diagnosis. Whilst the service does not offer hands-on clinical interventions they provide emotional support and practical strategies based on their experience and knowledge of services in and around Southampton. The service engages with people by telephone, or in person at dropins held throughout the city or in a one to one meeting. As part of the diagnosis pathway the service will offer all newly diagnosed people an appointment within 6 weeks of their diagnosis to explain and introduce the service as well as discuss the assessment and conclusion to address any queries or concerns they may have. The service also raises awareness of autism in the community, providing awareness sessions to professionals/agencies on request. They are currently providing such sessions within Education, Health & Social Care and the Criminal Justice System. Local support groups include: National Autistic Society South Hampshire Branch, Upper Shirley High (via Autism Hampshire), Southampton Information Advice and Support service, Buzz Network. What we were told re unmet needs and gaps: Make the point of access and system quicker Need to speed up the diagnosis process 23

24 Families advised of long lead in times e.g. to see GP, educational psychologist or paediatrician. Then there is a delay to get a diagnosis, which should not be the end of the process, but be the start. Then a delay to receive any service. At referral stage more information about waiting times and support available whilst waiting for diagnosis. o When moving from Children to Adults Services diagnosis not to be challenged and support to be continued even if you do not fit in the box. Parents requested that the pathway contains details re which professional is likely to be involved at each stage, and whether the child is seen on their own or with their family/carer at the various stages. Have more joint working between autism services and services for mental health/other conditions For adults with high functioning autism there appears to be separate support for mental health (Southern Health) and Autism (Autism Hampshire). It would be better if support was more joined up. Training for Autism professionals on co-morbidities. Re post-diagnosis support Support for client and family to understand diagnosis. Need to have support for siblings/family members, who often end up being overlooked at home because parents can struggle to cope with the affected child/adult. Once diagnosed 1:1 work should be planned to help the person come to terms with and gain an understanding of the condition ( On occasions the anxiety and depression is overwhelming and prevents a normal life ). More post diagnostic support - once you have that piece of paper you are then left to get on with it. o Parents advised that once in the system the communication is poor and timescales long o Need better signposting to services post-diagnosis. Have continuity of the staff giving support. Accept that some individuals need ongoing psychological support to maintain happy and productive lives and be able to live independently. Need youth groups that are specially facilitated to help with social skills What we will do/consider: Future commissioning could include a support service incorporating autism, and other conditions/co-morbidities e.g. mental health, learning disability. Review pathway and information/support given ***PLEASE REFER TO THE KEY ACTIONS DETAILED IN THE SEPARATE IMPLEMENTATION PLAN UNDER THE SECTIONS ACCESSIBLE INFORMATION IDENTIFY GAPS IN SERVICE PROVISION 24