A Joint Strategy for Lincolnshire

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1 x4 CCG Logo's to be inserted DRAFT 5.0 Appendix A Adults with Autism: A Joint Strategy for Lincolnshire Page 11

2 Document Control Document purpose: A commissioning strategy for services for adults with autism in Lincolnshire. Endorsed by the Autism Partnership for Lincolnshire, and the Lincolnshire Joint Commissioning Board for Learning Disability Title: Adults with Autism: A Joint Strategy for Lincolnshire Author: Paul Herniman Publication date: TBC Review date: TBC Target audience : Lincolnshire Autism Partnership, Lincolnshire County Council : Adult Care, Public Health, Children's Services ; Lincolnshire West Clinical Commissioning Group, Lincolnshire South-West Clinical Commissioning Group, Lincolnshire East Clinical Commissioning Group; Lincolnshire South Clinical Commissioning Group, United Lincolnshire NHS Hospitals Trust, Third Sector organisations, district councils, housing associations, Job Centre Plus, Lincolnshire Police, carers, people with autism, all contributors, residents of Lincolnshire. Version: 5.0 DRAFT This document is available in alternative formats on request. 2 Page 12

3 Table of Contents Executive Summary... 4 Introduction... 6 National Context: why do we need a strategy?... 6 What is a strategy for?... 8 Local Context... 9 Local Challenges Local Action So Far Adult Social Care Pathway Self-Assessment Current Considerations Governance: who is responsible for the strategy? Financial Commitment What people told us in the consultation Major Consultation Themes: Awareness and understanding of autism is generally limited Problems in seeking a diagnosis of autism Quality and accessibility of information for carers Need for clear processes for care, information and support Issues of transition from Children's to Adults Services The idea of a register for adults with autism Training for staff Transition Data Future Plans The Vision for Lincolnshire Page 13

4 Appendix A: Autism Strategy Initial Action Plan Appendix B: Glossary of Terms... tbc Executive Summary About 4,000 adults in Lincolnshire are estimated to have autism. Significant queries remain about lack of accurate data : statutory agencies do not have consistent or comprehensive systems for acknowledging,recording or defining the needs of people with autism, or similarly identifying people who are affected by autism as carers, friends or professionals. The Autism Act 2009, and subsequent guidance, places obligations on local authorities, NHS bodies and NHS foundation trusts to deliver services to people with autism by : 1. Increasing awareness and understanding of autism 2. Developing a clear, consistent pathway for diagnosis of autism 3. Improving access for adults with autism to the services and support they need to live independently in the community 4. Helping adults with autism into work 5. Enabling local partners to develop relevant services for adults with autism to meet identified needs and priorities The Joint Strategy for Adults with Autism in Lincolnshire will provide a framework for NHS and social care commissioners to comply with legislation and national guidance, and develop good practice in line with local needs. This Strategy will run for three years and aim to bring about reasonable and realistic adjustments to services within existing resources. The Strategy will act as a means of checking progress towards inclusion of autism as a priority consideration across health and social care services. The Lincolnshire Autism Partnership has adopted ten key principles which it expects to be reflected in any future strategy or planning statements. The principles are fully consistent with national strategy and provide a Lincolnshire context for developing autism services. The Lincolnshire Autism Partnership was set up to advise on all aspects of implementation associated with national and local autism policy and is made up of people with autism, carers, representatives of community and voluntary groups and professionals from the statutory sectors. 4 Local action to date has included : GPs attended a regional training event in May 2012 aimed at improving access to primary health care services for adults with autism. Work is underway to incorporate autism into the monitoring of treatment and co-morbidity by GP practices. Page 14

5 Improved diagnostic services are being piloted by Lincolnshire Partnership NHS Foundation Trust for an 18 month period to October Lincolnshire County Council has commissioned a series of awareness-raising sessions for staff across health and social care and is party to negotiations regionally with the National Autistic Society to deliver practice based training for front line staff. Lincolnshire County Council's website is to host training and e-learning materials on behalf of partner agencies. A request has been made to Public Health for the inclusion of Autism as a separate category in the Joint Strategic Needs Analysis for Lincolnshire with links made to that for Special Educational Needs and other relevant data areas. A public consultation was held 17 December March A summary of the consultation is included in this strategy. A full consultation Feedback Report and Consultation Evaluation Report are available separately. A Vision for Lincolnshire provides a framework for supporting adults with autism consistent with the plans and aspirations of partner agencies. 5 Page 15

6 Introduction It is estimated over 4,000 people in Lincolnshire aged have autism, a figure which is predicted to increase. By including people such as family members, carers, friends, professionals in the fields of health, social care, or education, and other members of the community, the numbers affected by autism are much greater. Autism is a lifelong developmental disability which affects the way a person communicates and relates to the world around them. A study from 2006 and currently cited by the National Autistic Society suggests there are over 700,000 people in the UK with autism - more than 1 in 100 individuals. In 2011, the Office for National Statistics estimated there were at least 623,000 people with autism living in the UK, many of whom will require access to mental health, learning disability and social care services at some point in their lives. Autism is a spectrum disorder. This means that although people with autism, including Asperger's syndrome, share certain characteristics they will be highly individualistic in the way their needs present themselves. Some adults with autism can live independent lives, but others may face additional challenges, including learning disabilities, which affect them so profoundly that they need support in many areas. Estimates of the proportion of people with autism who also have a learning disability vary considerably, and it is not possible to give an accurate figure. Collecting together the existing research, the National Autistic Society believe it is likely that over 50% of those with autism have an IQ in the average to high range and do not have a learning disability. A key issue is the gap in terms of estimated numbers of people with autism and capacity of the NHS to offer diagnosis. Around 50% of adults have autism but not a learning disability, and many of these are at present unknown to the NHS or to the local authorities. Together with their families, they make up over one million people whose lives are touched by autism every single day. Yet, research has shown that all too often adults with autism are unable to access the support they need, which was why the Government took forward the Autism Act and the subsequent strategy and statutory guidance. National Context : why do we need a strategy? The Autism Act 2009 was the first ever piece of legislation designed to address the needs of one specific impairment group adults with autism - and was a response to increasing evidence that adults with autism are excluded socially and economically. For example, estimates suggested that only 15% of adults with a diagnosis of autism are in employment, that they have below average health outcomes, and that a large number of adults with autism continue to live with their own families. The national strategy for adults with autism in England "Fulfilling and rewarding lives " (March 2010) stated the Government s vision that: 6 Page 16

7 All 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 mainstream public services to treat them fairly as individuals, helping them make the most of their talents. The strategy listed a range of actions which would form the basis of a continuous delivery plan, grouped in the following themes : 1. Increasing awareness and understanding of autism 2. Developing a clear, consistent pathway for diagnosis of autism 3. Improving access for adults with autism to the services and support they need to live independently in the community 4. Helping adults with autism into work 5. Enabling local partners to develop relevant services for adults with autism to meet identified needs and priorities In June 2012 the National Institute for Health and Clinical Excellence (NICE) published a clinical guideline on Autism addressing the recognition, referral, diagnosis and management of adults on the autism spectrum. This followed the September 2011 publication of its clinical guideline on Autism diagnosis in children and young people. NICE is also developing guidance on managing autism in children and young people which is due for publication in November This will include reference to the need for more attention to social communication interventions and whole family support plans. A key factor in diagnostic pathway design will be NICE guidance on who should make a diagnosis of autism. The prevalence of autism predicted in the population suggests that a range of professionals need to be involved in diagnosis in order to achieve the rate of diagnosis suggested by the prevalence study. NICE s approach is to ensure that diagnosis is made by those with sufficient understanding and knowledge of autism through a multi-professional approach rather than restricting diagnosis to any one clinical specialism. NHS Commissioners have, in line with the NICE clinical guideline for adults, been reviewing their diagnostic processes and services against this best practice and reducing the gap between likely prevalence and diagnosis rates. Clinical Commissioning Groups (CCGs) will need to continue with this including the differentiation between mechanisms to enable diagnoses for large numbers of people with autism as opposed to more detailed assessment profiles of smaller numbers of people with autism and additional complex support needs. Social factors such as poverty, discrimination, unemployment, housing and social isolation adversely affect the health of people with autism. CCGs aim to demonstrate through local Joint Strategic Needs Assessments and local authority autism self-assessments the need for autism services in their area and the priority they are giving to autism, and by doing so provide information for local service users and representative groups to identify any gaps. NICE is due to publish adult and children s quality standards later in The quality standards will be reflected in the new Commissioning Outcomes Framework which will inform payment mechanisms and incentive schemes such as the Quality Outcomes Framework. 7 Page 17

8 What is a strategy for? National and local reports have consistently said that adults with autism need many of the same things that all people want and see as important. These include: a safe and happy home life, jobs, friends and partners, and money to access the same valued opportunities as anyone else. However, adults with autism are amongst the most socially excluded people in the country. This follows from too many people being undiagnosed and mainstream services lacking the necessary confidence, skills and experience to enable this. To make "Fulfilling and rewarding lives" a reality, all local authorities and NHS bodies are required to follow statutory guidelines. Initial guidelines focused on improving delivery in seven areas : 1. the provision of relevant services for the purpose of diagnosing autism spectrum conditions in adults 2. the identification of adults with autism 3. the assessment of the needs of adults with autism for relevant services 4. planning in relation to the provision of relevant services to people with autism as they move from being children to adults 5. other planning in relation to the provision of relevant services to adults with autism 6. the training of staff who provide relevant services to adults with autism 7. local arrangements for leadership in relation to the provision of relevant services to adults with autism "Fulfilling and rewarding lives " requires that local authorities and NHS Trusts ensure that the guidance is: followed by other organisations that deliver services under contract for them such as organisations contracted to provide residential or day care on behalf of a local authority. Other providers of public services such as employment services, police and probation are not legally required to have regard to it. However, by following the guidance, these bodies could help improve the delivery of the services they provide This Joint Strategy for Adults with Autism in Lincolnshire will provide a framework for NHS and social care commissioners to meet the requirements of legislation and to develop plans fully compliant with the ten key principles articulated by the Lincolnshire Autism Partnership. Refer to Figure 1. on page 10. The Strategy will also act as a benchmark for other statutory and independent services in the Lincolnshire community who will be encouraged to endorse its vision and invited to consider how they can make their own services more accessible for adults with autism. 8 Page 18

9 Local Context Historically, services relevant to adults with autism in Lincolnshire have developed in a piecemeal fashion across the health and social care sector, leading to inconsistencies and a wide variation in personal experiences. On 17 February 2012 Lincolnshire County Council and NHS Lincolnshire gave approval for the development of a countywide strategy for adults with autism. This Strategy will run for three years and aims to bring about reasonable and realistic adjustments to services within existing resources. The Strategy will act as a means of checking progress towards inclusion of autism as a priority consideration across health and social care services. The Joint Health and Social Care Strategy for Lincolnshire will show how improvements in autism services will be made over the three year period of the strategy's validity. An action plan is included as an appendix to this document. Partner agencies were invited to make clear their commitment to autism services by helping to complete the plan and making clear their commitment to fulfilling those elements appropriate to their individual sectors. The Joint Commissioning Board will authorise this strategy, and direct arrangements to monitor and review the associated action plan. The Lincolnshire Autism Partnership has adopted ten key principles which it expects to be reflected in any future strategy or planning statements. Over 99% of respondents to the consultation questionnaire agreed with the ten key principles. These can be seen in Figure 1. below. 9 Page 19

10 Figure 1. Lincolnshire Autism Partnership's strategic statements 1. Ensuring that all adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. 2. That people with autism have the same rights as everyone else and should be able to access services and participate in society on an equal basis. 3. Ensuring existing policies, responsibilities and duties which have a bearing on autism are known and followed. 4. Treating people with autism as individuals who have choice and control over their lives. 5. Ensuring that all staff supporting people with autism are well trained, that training is refreshed regularly, leads to changing behaviour and attitudes and reflects the actual situations staff work in. 6. Developing person-centred support which recognises how a person's routines and rituals affect their life. 7. Enabling the person to develop meaningful relationships with others to reduce safeguarding issues and empowering the person to sustain relationships. 8. Ensuring that people with autism and their families have good access to information to help with decision making. 9. Making services more accessible for people with autism (and that where necessary reasonable adjustments are made, as required by the Equality Act 2010). 10. Promoting recognition of the whole family and the needs of carers of people with autism. The ten key principles are fully compatible with local and national guidance so provide a convenient way of representing national priorities in a Lincolnshire context. 10 Page 20

11 Local Challenges Progress in Lincolnshire towards the delivery of statutory guidance is broadly in line with other authorities in the East Midlands. Monitoring activity is subject to a scheme of self-assessment reporting submitted to the Department for Health on an annual basis and provides a means of comparing progress on a national and regional basis. The Lincolnshire Autism Partnership was set up to advise on all aspects of implementation associated with national and local autism policy and is made up of people with autism, carers, representatives of community and voluntary groups and professionals from the statutory sectors. The Partnership continues to act as a source of expert advice and guidance and links people with autism and their carers more closely with the adults' commissioning cycle in both social care and health care agencies. The benefits of this close working relationship include ; 1. co-producing reports, guidance and advice 2. opportunities to raise issues, expectations and outcomes around services for people affected by autism 3. provision of intelligence and data 4. suggesting information about autism for the My Choice, My Care website. 5. promoting good working relationships between individuals, groups and agencies 6. acting as a reference point for decision making and governance. Specific challenges identified have included : 1. training for doctors 2. the need to define a clear diagnostic pathway 3. the need for autism awareness training among health and social care staff 4. autism to be acknowledged in the Joint Strategic Needs Assessment (JSNA) for Lincolnshire 5. lack of data Local Action So Far Work to date which has been highlighted in the annual Department of Health Self- Assessment report has focused on four areas: GPs attended a regional training event in May 2012 aimed at improving access to primary health care services for adults with autism. Work is underway to incorporate autism into the monitoring of treatment and co-morbidity by GP practices. Improved diagnostic services are being piloted by Lincolnshire Partnership NHS Foundation Trust for an 18 month period to October Lincolnshire County Council has commissioned a series of awareness-raising sessions for staff across health and social care and is party to negotiations regionally with the National Autistic Society to deliver practice based training for front line staff. 11 Page 21

12 12 Lincolnshire County Council's website is to host training and e-learning materials on behalf of partner agencies. A request has been made to Public Health for the inclusion of Autism as a separate category in the Joint Strategic Needs Analysis for Lincolnshire with links made to that for Special Educational Needs and other relevant data areas. The 2012 self-assessment highlighted the need for better access to statutory social care and preventative services for people with autism, whether diagnosed or not, particularly for people with high functioning autism. Work is underway to address gaps in the link between child and adult services, including the way information about the needs of an individual with autism is used or transferred, but queries about the quality and consistency of transition processes for people with autism continue to be raised by the Lincolnshire Autism Partnership.. Adults Social Care Pathway NICE guidance covering the recognition, referral, diagnosis and management of adults on the autism spectrum provides a foundation for local commissioners to develop referral and care pathways and improve support for people with autism during a care assessment. To achieve what the guidance requires in terms of an integrated programme of care across all care settings, there is a need to strengthen transition between adults services and the draft Lincolnshire Children s Autism Pathway developed in 2010, and improve links to training, further education and employment and access to mental health services, Clear protocols developed jointly by Children s and Adults' services are needed for: The sharing of information about the needs and numbers of children with autism. Ensuring and evidencing that parents of children and young people with autism are informed of their right to a community care assessment and carers are informed of the right to a carer s assessment. Ensuring Adult Care services are aware that an individual with autism is approaching adulthood and may need a community care assessment. Providing staff in Children s and Adults' services with training and support on the operation of the pathway. Ensuring relevant professionals (health, social care, housing, educational and employment services and the Third Sector) are made aware of the local autism pathway and how to access services. Self Assessment The Department of Health self-assessment for , to be launched in summer 2013, will require that submissions are co-produced with carers and adults on the autistic spectrum. It is likely that perceived shortcomings in the social care pathway and transition processes will be given prominence in the report and which will have an impact on the county s overall rating. Page 22

13 The Action Plan will provide for a joint Adults and Children s task and finish group, including engagement with Public Health and overseen by the Lincolnshire Autism Partnership Group, to be established in the period leading up to the self-assessment to finalise the Adults' pathway and agree protocols for transition. Current Considerations The current financial climate is very challenging and there are currently no additional resources available to implement the Autism Strategy. The number of people with a formal diagnosis of autism is likely to be significantly less than the actual number of adults with the condition. Changes in access criteria to local authority social care services have had the effect of removing those with assessed "moderate" needs. Those with moderate needs no longer qualify for Personal Budgets or local authority funded services. In common with England and Wales as a whole, lack of autism awareness among professionals and the general population has resulted in significant numbers of people in Lincolnshire not being identified and diagnosed. Similarly, evidence from carers suggests that people remain undiagnosed because of difficulties accessing diagnostic and support services in both health and social care. Governance : who is responsible for the strategy? The Lincolnshire Autism Partnership exists to represent statutory agencies, the Third Sector, carers and people with autism, and to promote, co-ordinate and champion better autism services. The Partnership has had a central role in co-producing the Strategy and should have a continuing role in monitoring and promoting the Strategy after its formal adoption. To date, the Partnership has been given no executive status. It is recommended that the status and role of the Partnership be considered in the longer term. Other governance arrangements specific to Lincolnshire County Council and the NHS in Lincolnshire will exercise this function until decided otherwise. This includes, but is not confined to, the Joint Commissioning Board for Learning Disability. A potential role for the Lincolnshire Health and Wellbeing Board has yet to be defined. Financial Commitment Adult Social Care provides care and support services to a wide range of vulnerable adults based on eligibility criteria. Identifying how much is spent specifically on autism is difficult. Because of issues over diagnosis and identification of autism there is considerable difficulty in measuring numbers and specific spend. It is accepted that some adults with autism who also have learning difficulties or mental health problems may receive social care services, 13 Page 23

14 but current data recording and coding processes do not detailed enough figures to account for all service users with autism. For similar reasons there is no discrete budget for autism. However, figures on expenditure for the last financial year show Learning Disability services spent 1,957,692 with one autism provider in 2012/13. This total included expenditure of 1,178,445 on long-term residential care for 11 service users 765,204 on 20 clients in supported living 54,452 on day care services for 2 service users. Mental Health services spent for 2012/13 on domiciliary services for one service user. We cannot currently determine which other service users who may have autism are receiving care through other non-specific providers or through a direct payment. Lincolnshire County Council Adult Care has 5,000 currently allocated to autism specific training. What people told us in the consultation The consultation process was agreed and promoted by the Lincolnshire Autism Partnership. The Partnership is a body of people with autism, carers, community representatives, Third Sector groups and professionals from health care and social care sectors. The Lincolnshire Autism Partnership has been set up to advise and promote work on the Adults with Autism Strategy for Lincolnshire. A major feature of its work has been the development of a set of key service principles ( Figure 1,page 10) which aim to underpin the objective of improving the lives of people with autism. As part of the strategy development, a public consultation exercise was conducted over a period of thirteen weeks from 17 December 2012 to 22 March The purpose was to consult with a range of stakeholders in order to inform the strategy and help make decisions about future actions that are required in Lincolnshire to embed the vision as set out in the Government's "Fulfilling and rewarding lives" strategy. The Autism Strategy Consultation Feedback Report and the Autism Strategy Consultation Evaluation Report detail the findings of the consultation and are available as a supplement to this Strategy. An online questionnaire formed the main basis of the consultation and was drafted with assistance from members of the Lincolnshire Autism Partnership. It was promoted and made available through dedicated information webpages on the Lincolnshire County Council website. Direct links to the online questionnaire were set up for the duration of the consultation via websites for other statutory bodies, along with members of the Lincolnshire Autism Partnership cascading information about the consultation to their respective groups and organisations through their own websites and other relevant communication networking channels. 14 Page 24

15 A hard copy paper version and an easy read version of the questionnaire were also made available on request. In addition to the questionnaire, a facilitated consultation workshop was conducted as part of the Lincolnshire Learning Disability Partnership Board meeting on 14 February 2013 to discuss key themes in respect of autism with a wider audience consisting of service users, carers and providers. A further facilitated session took place on 18 March 2013 for professionals to provide responses to the consultation on the same key themes. The end of the consultation period coincided with the 10th Lincolnshire Autism Conference, organised by the Lincolnshire Autistic Society and the Specialist Outreach Teachers (STAPS) group, which was held on 21 March Each delegate was provided with a hard copy of the consultation questionnaire in their delegate pack, which they were able to complete and return to staff on the day for submission. A total of 214 questionnaires were received during the whole consultation period, with 160 of these submitted online. A further 54 hard copy paper versions of the questionnaire were returned, five of which were completed in the Easy Read format. The number of questionnaires received, 214, in response to the consultation was seen as positive, although it was noted that the number of people with autism who completed the survey (9.8% of the total response) was relatively low. A wide variety of views were provided on a range of themes about autism and all of the information submitted by stakeholders was analysed and used to inform the Feedback Report. An Evaluation Report was based upon an analysis of both quantative and qualitative data contained in the Consultation Feedback Report. The Evaluation Report provides an insight into the key themes that were raised by stakeholders and holds evidence that can be used to direct the future improvement of services for adults with autism. In general, the consultation has informed us that much work is required before people with autism will feel that the key principles developed by the Lincolnshire Autism Partnership have been comprehensively met. Major Consultation Themes Major themes emerging from the consultation are 1. Awareness and understanding of autism is generally limited : "The majority of professionals have very little understanding of how an autistic person processes information or what affects them " "There is a lack of awareness of the Autistic spectrum in most health care settings " "Health Care Professionals seem to have little understanding of people with Autism." "They are not even aware of how they inadvertently trigger anxieties just by their own behaviours!" 15 Page 25

16 On the basis of the results of the consultation, it is evident that there is a lack of awareness of autism amongst health services in Lincolnshire, with less than 10% of respondents having a positive experience. Having to cope with inappropriate environments within healthcare buildings and difficulties in making appointments that are suitable for the individual needs of a person with autism appear to be some of the main issues. A potential solution to some of the problems faced could be through increasing the remit of Health Liaison Officers regarding autism cases and enhancing this role to promote more positive outcomes when people with autism use health services. The responses highlighted some specific problems relating to the general lack of understanding and awareness of autism. Difficulties identified included : booking appointments. Both the appointment booking system, and the struggle this can cause due to ineffective and inappropriate communication abilities, as well as the time and venue of the appointment being unsuitable to meet the needs of a person with autism. dealing with receptionists. Comments to the consultation indicated that receptionists, usually the first point of contact, were often dismissive of autism and unhelpful, which increased anxiety and made the situation more challenging. provision of complex information terminology and vocabulary used by medical staff when communicating information to people with autism was all too often complicated, unclear and generally inappropriate.. However, a consultation workshop for professionals suggested that existing Health Liaison Officers were available to provide support and help service users to try to avoid some of the difficult situations being encountered. It was recommended that it would be useful to speak to Health Liaison Officers in more detail about the subject, with the potential for them to help provide more positive outcomes for people with autism. 2. Problems in seeking a diagnosis of autism "A comprehensive programme of training and awareness raising with health professionals would be the best way to ensure that the diagnostic pathway is clear and that the majority of people needing/ wanting a diagnosis receive one" "Support groups and information should be widely available and courses to help with coping strategies could also be helpful for carers and cared for people" "Signposts to services, help forums, support groups and information. Leaflet to parent/carer at the time of diagnosis, so they do not leave feeling nothing will be helpful " " What few services are available are very disjointed. Information is very sporadic at a time when you have few personal resources left " The consultation has indicated that ideally everyone who shows signs of autism should be referred for a diagnosis or should at least be offered the opportunity of a referral. The 16 Page 26

17 introduction of an assessment tool for GPs and other health professionals to use to identify people who need a diagnosis would also prove beneficial according to the consultation. After autism is diagnosed, the provision of clear information and advice to people and their families or carers about services and support available is seen as a key issue. The process of getting a diagnosis was frequently seen as too difficult. In addition, having been diagnosed, suitable support mechanisms were not always in place to provide the necessary help required to come to terms with having autism. 3. Quality and accessibility of information for carers "Help and guidance for parents and carers. More information of the implications of the condition in adolescence and adulthood" " Provision of carers' assessments and clear information about what these assessments are and what they might lead to " "Support after diagnosis was non-existent for us, follow-up appointment was over a year later than it should have been, nothing else really there. Was like being told, yep you are right, it is a broken leg, now off you go!" A recurring theme throughout the consultation from respondents is that information about autism and signposting to available support needs to be improved. Information should be provided after a person has been diagnosed with autism so that they are fully aware of the condition and where help and support can be sought. Receiving appropriate information and guidance is key when dealing with the transition from children's to adults' services and coping with major changes in life such as leaving school or college or moving into new accommodation. 4. Need for clear processes for care, information and support " Idea of the month...work together! " "In all the years I have been dealing with autism and special needs there has never been enough communication between agencies concerned " " There should be continuity of care - a clear pathway for people with autism and those who care for people with autism. Too often after a diagnosis people are cut lose and have to fend for themselves " The consultation found not only is it important that appropriate information and guidance is provided to people with autism, whether it be before or after diagnosis, but also to make it easily accessible. This includes details about professional support but also community and 17 Page 27

18 voluntary support groups that are on hand to offer support and guidance for people with autism, their families and their carers. With this in mind, the 'My Choice My Care' adult social care directory on the Lincolnshire County Council website is seen as an ideal location to provide an online source of information regarding autism, with the capability to provide dedicated webpages for people to access and seek necessary support. 5. Issues of transition from children's to adults' services " Always about the young isn't it?...it's like we hit 18 and then it magically disappears" "When they reach 18, options for support reduce drastically if the person does not go to college " The findings of the consultation support the fact that the transition from children's to adults' services is a major challenge for people with autism and that it is critical that improvements are made to ensure that the process is smoother and people feel sufficiently supported through this stage in their life. Better communication is seen as key to this, both in terms of building productive relationships between the various partners and services involved with the transition, as well as making sure that the service users themselves are kept involved in the process and given clear information an explanation about what is happening. A clear pathway from childhood into adulthood needs to be designed and embedded for people with autism. There is a need to ensure that people do not feel isolated once they reach school-leaving age and they are signposted towards support services and opportunities that are available to them on becoming an adult. There also needs to be a greater awareness of autism amongst all services and sectors of the community to support other major changes in life that people with autism experience. 6. The idea of a register for adults with autism "People with autism are often vulnerable and a register would help to identify and support those who are " "I also have reservations on the terminology of register, If you said register to Joe Public they may misconstrue the term " "No register as lots of people with traits are not diagnosed so modification of services needs to be rolled out universally " "It would assist with 'joined up' provision and stop parents/carers having to repeat the same information all the time" 18 Page 28

19 There was a very mixed range of opinions regarding the potential for introducing and maintaining a register detailing adults with autism (and their health needs). Nearly 60% of respondents agreed with the statement in the consultation questionnaire, 'It would help professionals keep track of people as they move from one service to another.' There was also a substantial amount of positive feedback submitted in the additional comments box provided for this question. However, virtually an identical number of negative comments were received in relation to the proposal for a register, with some examples provided below : A register would need to be voluntary many respondents felt that people would or should have the opportunity to make a choice about being on the register or not and be able to opt out if they so wished. A number of issues were raised about who would be able to access the information and how confidentiality of personal details could be ensured. People also commented that it might be difficult to maintain an up to date and accurate register. 7. Training for Staff " Training is the key word" "Make sure.. the staff doing the assessments are specifically trained in dealing with people with autism" "Staff who understand autism is the most crucial point! " " Face to face training from experienced people is optimum" "All of the above are important...everyone coming into contact with a service user should have the same training on Autism." There appears to be an overwhelming need for autism awareness training across the breadth of health and social care services and beyond. Face to face training and the use of people with direct experience of autism to help deliver training is seen as vital in getting the message across in the most effective manner. The consultation highlighted that having staff properly trained was of paramount importance. Although a section of the consultation questionnaire was dedicated to the training of staff ('Making health and social care staff aware of autism and improving practice'), the topic was raised by respondents throughout the various themes contained in the questionnaire, as shown by some of the comments provided above. Respondents were also asked to rate which staffing roles should be the priority for receiving autism training. Of the nine groups of staff that needed to be ranked in order of importance (with 1 being most important and 9 least important), staff carrying out health and care assessments was deemed to be the highest priority, as detailed below. 19 Page 29

20 Other groups seen by respondents as being of most importance were staff who support people moving from children's to adults' services, with an average ranking of 3.39, along with doctors and social workers, who were scored at a similar level. However, the vast majority of comments received on the subject stated that it was equally important for all staff to be provided with autism training or that it had been very difficult to rank staff in order of priority. The initial action plan (see Appendix A) lists current training and information intentions. Transition Child and adult providers tend to be very different in terms of what services they offer, and how they offer them. Transition between child and adult services can indeed be a complex yet important process for people with autism. Implementing a few simple recommendations can help with this, including: ensuring that planning data regarding numbers of young people aged 14 to 19 with autism is routinely passed on to adult services every year; each local area has a properly joined-up transition care pathway; and that services are required by commissioners to communicate with each other about this. A key area is for services to ensure local pathways are easily understood and able to signpost families to support. Often families of children with learning disabilities and autism have clearer options to access specialist support than families of children in mainstream education. As such the Approaching Adulthood programmes being piloted in Greater Manchester is an example of best practice. These offer information and support to families about a range of things including education, employment, welfare benefits, the Mental Capacity Act, FACS eligibility criteria, etc. These can be run jointly by professionals in adult and children s services with an emphasis on empowering families, and can go hand-in-hand with existing transitions protocols. The Department of Health is also working with the Department of Education to introduce from 2014 a new single assessment process and Education, Health and Care Plan to replace the current system of statements and learning difficulty assessments for children and young people with special educational needs; supported by joint commissioning between local partners (subject to parliamentary approval). The process will include young people with a learning difficulty up to the age of 25, to ensure they are supported in making the transition to adulthood. The draft legislation aims to improve the support provided to children and young people, and to their parents. A single system would ensure children and young people received the support they need regardless of age or where they are taught, providing for them from birth until, where appropriate, their 25th birthday, with comparable statutory rights and protections throughout. Local authorities in England will be required to work with local health services, to plan and commission support across education, health and social care. They would also be required to set out a local offer of the services available to children, young people and their families. The current SEN statements and learning difficulties assessments would be replaced by a single assessment process. The resulting Education, Health and Care Plans ( EHCP) would 20 Page 30

21 provide a commitment from all services to support educational and other outcomes. All young people and parents of children with an Education, Health and Care Plan would have the option of holding a personal budget, giving them greater control over how their support is delivered. The reforms would also strengthen the redress process. Young people outside of the school system would be able to appeal to the First Tier Tribunal for the first time. Where parents or young people wished to make an appeal to the First Tier Tribunal (Special Educational Needs and Disability), they would first be required to go to mediation. Together, these reforms are intended to build a system to work in the best interests of the children and young people and provide them with the greatest opportunity to succeed. The detail of the draft regulations and the guidance will be developed as we learn from the current pathfinders. In Lincolnshire, education, social care and health care commissioners will need to adapt internal pathways and processes to ensure the new single assessment process meets the needs of children and young adults with autism. Existing governance and planning processes should be used to pursue these requirements. The existing Lincolnshire Transition Service Governance Board is likely to play a central role in this regard. An agreed task and finish group structure representing children's, adults' and service user requirements will be put in place to achieve this. Data As stated above, there is a significant challenge in accounting for the numbers of adults with autism known to services. Adult Social Care data bases do not currently record autism as a separate category in personal records although it is known that a proportion of adults in learning difficulty or mental health services will also have autism. NHS commissioners are able to account for residential care activity. The latest figures available show as at January 2012 that 41 adults with autism were in residential placements of which : Lincolnshire County Council had 30 adults receiving specialist care for autism in care homes. One person was placed in an independent hospital. Funding in some cases was provided from a pooled budget under the Section 75 agreement between Lincolnshire County Council and NHS Lincolnshire NHS Lincolnshire was responsible for placing 11 adults in autism specialist residential services, either jointly funded with the local authority, or through the fully funded NHS Continuing Healthcare scheme. A request has been made for Public Health to include autism as a separate category in the Joint Strategic Needs Assessment for Lincolnshire. When agreed this will provide a platform to develop and report intelligence on autism prevalence, both projected and actual. 21 Page 31

22 Future Plans The NICE autism quality standards (due for publication in late 2013, will help to embed the needs of adults with autism into the health and social care system by assisting : health and social care professionals to base decisions on the latest evidence and best practice people with autism to understand what services they should expect from health and social care providers service providers to assess and implement high standards of clinical performance and care; commissioners to purchase high quality and cost effective services. Certain areas of autism are better accepted by statutory services than others. Those with learning disabilities and defined mental health conditions more easily meet formal access criteria. Large numbers of people who do not present overtly challenging behaviours can nevertheless suffer from chronic lack of self-esteem, marginalisation and social disadvantage. They need access to good information and advice and guidance to allow them to exercise choice and control. Commissioners of autism services in Lincolnshire will review services in the light of the quality standards when available. The Vision for Lincolnshire Lincolnshire's intentions for supporting adults with autism are: a strong integrated health and social care component that focuses on early identification of and support for people with autism, and targets high-risk groups such as people who are at risk of exclusion from local communities, people who are presenting challenging behaviours, or people who have complex support needs with accompanying health conditions or risk factors. assessment and early diagnosis services for people with autism spectrum conditions. Autism is a neurodevelopmental condition which is diagnosed behaviourally. This includes advice and support during the assessment phase and after diagnosis to assist with action planning for the future. It should include a treatment service in accordance with NICE recommendations. evidence-based early interventions targeting social and communication enhancement interventions and working with whole families with respect to emotional health and well-being through both statutory and Third Sector partners. an identified range of initial post diagnostic support options, including person-centred interventions, access to support groups and family support programmes (given the risk of 22 Page 32

23 progression to more severe problems where Autism cannot be accommodated in mainstream settings). on-going local post-diagnostic support based in the community, especially for individuals with complex support needs. These will incorporate evidence-based specialist health and social interventions for people with autism and their carers, and will where appropriate include coordinated care for individuals either by a member of a community health care team or an identified person in a voluntary sector organisation (linking with the community health care team). This could include an autism advisor or a designated member of the health or social care team to act as a care manager if the person has more complex needs. a range of mainstream community options and reasonable adjustments in place to support access, including telecare, housing adaptations, carer support and access to day opportunities, educational facilities or employment. specialist mental health or learning disability care services for people with autism who present challenging behaviours, people with co-morbid functional mental health problems, and those with learning disabilities and complex diagnoses. These services will include a specialist service to manage patients with extremely challenging behaviours who need intensive support (including assessment and interventions to manage behaviours that place the individual or others at risk). This service will have a strong community focus, but will have access to a limited number of inpatient assessment and treatment beds for short periods of time (and include those detained under the Mental Health Act or the Deprivation of Liberty Safeguards). Special attention should be given to people living in supported accommodation or care homes. The level of co-ordination and organisational adjustment needed to meet these requirements represents a significant challenge at a time of fiscal stringency. Stakeholders will need to agree costed models of practice to establish priorities for funding. Commissioners will acknowledge a full range of options for involving people with autism and their families in recruitment, training, running and monitoring services and user-led initiatives such as self-help groups, and employment schemes. Similar principles of coproduction will apply to the drafting of service specifications and the design or review of existing or new services. CCGs will therefore need to build a specialist pathway within existing arrangements or establish a local specialist multidisciplinary autism team resource to provide the following: Help people with autism access appropriate mainstream services Support individuals and agencies across the care pathway (including health, social care and voluntary sector services) involved in providing mainstream services and support to people with autism Access to a local diagnostic assessment; Post-diagnostic support for all assessed individuals through structured support groups and individual de-briefing sessions Comprehensive post-diagnostic support for small numbers of individuals with complex support needs that make accessing mainstream services difficult 23 Page 33

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