Redbridge Autism Plan

Transcription

1 Redbridge Autism Plan For more information, details of the current Action Plan, or to comment on the plan please contact: Julie Fanning Executive Policy Adviser Adult Social Services Ley Street House, Ley Street, Ilford, Essex IG2 7QX Telephone: Facsimile: September

2 Contents 1. Introduction 2. Definition 3. National and Local Context 4. Consultation and involvement 5. Progress on Overarching Priority Areas Appendices A. NHS and Adult Social Services Outcomes B. Strategic Planning Context C. Autism Spectrum Condition Adult Care Pathway D. Feedback Form E. Equalities Monitoring Form 2

3 1. Introduction The Autism Act 2009 is the first disability-specific law to have been passed in England. It put a duty on the Government to produce a Strategy for adults with autism and to provide statutory guidance for councils and NHS bodies to support implementation. Councils and their NHS partners are required to produce local plans which show how they will enable adults with autism to get the help they need to choose how they live their lives. They must also commission services based on adequate population data. No additional resources were provided to assist with the implementation of the Strategy at local level. However evidence highlighted in the Redbridge Joint Prevention and Early Intervention Strategy has shown that integrated access; shared outcomes; joint commissioning and innovation in service delivery can improve performance, quality and the service user and carer experience. Although the Statutory Guidance was issued to councils and the NHS, it clearly highlights that success can only be achieved through change across all public services and with meaningful involvement of people with autism and their carers. The Redbridge Autism Plan has been developed as a partnership with adults with autism and parent carers and has involved a range of statutory and voluntary agencies. An Action Plan has been developed and endorsed by the relevant commissioning bodies and progress is being monitored through the appropriate Board. 2. Definition For the purposes of this Plan, we define autism as follows:- Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. (Source: National Autistic Society) It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives, while others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over or, under sensitivity to sounds, touch, tastes, smells, light or colours. It is recognised that individuals and groups may use different terms including autism spectrum disorder and autistic spectrum condition. In this plan we have used autism and autism spectrum disorder (ASD). Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language. 3

4 3. National Strategy and Policy Context The Autism Act 2009 put two key duties on the Government. The first was to produce a strategy on services for adults with autism. In March 2010 Fulfilling and rewarding lives the strategy for adults with autism in England (2010) was published. The second duty was that statutory guidance for local authorities and local health bodies had to be published by the Secretary of State for Health by the end of Implementing Fulfilling and rewarding lives was duly published in December The Act had stated that the aim of this guidance was to secure implementation of the strategy. Further guidance; Fulfilling and rewarding lives: Evaluating Progress (DH April 2011) provided a national self assessment framework which highlighted seven outcomes and three service ambitions as criteria for success, which could be used as a benchmarking tool for the future:- Seven quality outcomes that will show progress 1. Adults with autism achieve better health outcomes; 2. Adults with autism are included and economically active 3. Adults with autism are living in accommodation that meets their needs 4. Adults with autism are benefiting from the personalisation agenda in health and social care, and can access personal budgets 5. Adults with autism are no longer managed inappropriately in the criminal justice system 6. Adults with autism, their families and carers are satisfied with local services 7. Adults with autism are involved in service planning. Service Ambitions 1. Local authorities and partners know how many adults with autism live in the area 2. A clear and trusted diagnostic pathway is available locally; and 3. Health and social care staff make reasonable adjustments to services to meet the needs of adults with autism For the purposes of this Plan we are considering the following 4 overarching areas which clarify and encompass all the priorities listed above from the Government Strategy and subsequent Statutory Guidance as follows:- More comprehensive training for staff who provide services or are likely to be in contact with people with autism see section 5.1 Identification and diagnosis of autism in adults leading to an assessment of needs for relevant services see section 5.2 Planning in relation to the provision of services for people with autism as they move from being young people to adults see section 5.3 Local planning and leadership in relation to the provision of services for adults with autism including recommissioning of services and commissioning of new services see section 5.4 4

5 These outcomes reflect the key issues raised during the consultation process and the priorities and principles set out in the Government s Capable Communities and Active Citizens: A Vision for Adult Social Care and Equity and Excellence the Vision for the future of the NHS. They also sit alongside the wider outcomes proposed in the Local Authority, NHS and Public Health national outcome frameworks. These have been updated more recently but to give a flavour of the direction of travel and the linkages, see table at Appendix A. In particular, these refer to reducing health inequalities, promoting personalisation, health and well being, enhancing quality of life for people with care and support needs and ensuring a positive experience of care and support services. The Redbridge Adult Autism Plan is a joint response by local agencies, people with autism and carers to show how we are planning and developing services and support to meet the needs of adults with Autism in Redbridge. An Action Plan has been developed by a multi agency Working Group, which includes parent carers, to take forward the priority areas and practical actions identified during the consultation process. Actions in the plan are rated as red, amber or green to reflect progress and they are regularly reviewed at Working Group meetings. The action plan is a living document with new priorities being added as initial outcomes are achieved. The Plan links in to existing local Strategies and Plans including the Joint Prevention and Early Intervention Strategy, which highlights the value of shared outcomes and the need for clearer care pathways, the Joint Carers Strategy, Housing Strategy and the Redbridge Community Strategy. Appendix B shows the wider national and local policy context including Valuing People 2001 and Valuing People Now 2007 and No Health without Mental Health The Joint Strategic Needs Assessment includes a section on Autism, which predicts an increase in the number of people with ASD between 2010 and 2030 and highlights a gap in knowledge of the number of people that do not currently meet the eligibility criteria for adult social services support and who may benefit from preventative interventions. Some of the actions in the Plan will attempt to improve this position. 4. Consultation and Involvement In response to the Government Strategy and subsequent guidance, a Steering Group was established, initially working across Redbridge and Waltham Forest to involve service users, carers and professional staff, to begin the development of the local Plan. The timetable to date has been:- An Autism Planning Group held a Stakeholder Workshop in January 2011; Carers, health and social care staff were asked to complete a questionnaire, which highlighted areas for improvement; A cross borough Joint Steering Group was established to oversee development of the autism plan and meetings were held in March 2011 to examine the feedback from the event and determine the key issues and further actions to be included in the Plan; Parent carers were surveyed and responses collated ; The final joint Steering group meeting took place in June 2011; 5

6 In September 2011 the Redbridge Working Group was established to provide a more borough based focus and to assist with the development and implementation of a Redbridge Plan; Three Work streams were established to take forward three priority area contained in the Action Pan i.e. Training, Improving Care Pathways and diagnosis and Community Development. The responses from parent carer survey were used to inform the development of the work streams; In November 2011 a Parent Carer Focus Group was established in order to consult on and discuss the issues being raised at the Working Group meetings and to support the engagement of adults with autism; It was agreed that it would be helpful to approach consultation with adults with autism by focussing on a particular project and building in to that process awareness and understanding of the Autism Plan. This will be done through existing partnership Groups, voluntary groups and electronically through promotion on Redbridge i, which we hope will ensure all those on the autistic spectrum will have the opportunity to contribute ; A first draft Redbridge Plan was made available to provide an opportunity to endorse the priority areas and for more detailed information to be included; Agreement was reached that the Autism Working Group would report to the Redbridge Shadow Health & Well Being Board as appropriate, through the Redbridge Prevention, Early Intervention and Inclusion Working Group; In December 2011 a Community Development Workshop was held to explore in more detail, with a wider group of stakeholders, how support for people with ASD, that do not meet the Fair Access to Care Services eligibility criteria, could be improved; and In February 2012 the second draft Autism Plan and an Easy Read version was available for a 12 week consultation period. Following an extension to allow more time to seek the views of service users on the Alert Card proposal the consultation closed in July From July 2012 the Working Group began implementing the Action Plan, using red/ amber/ green flags to highlight progress against each outcome. Feedback from Stakeholders From the engagement undertaken in early 2011, a number of issues emerged as areas for more exploration and improvement as follows:- 1. staff training 2. education/lifelong learning/employment opportunities 3. criminal justice/hate crime issues 4. support and training for parents/carers 5. transition/personalisation/eligibility 6. housing 7. definition of autism/data collection/data analysis 8. diagnosis/health & social care pathways 9. health 10. communication and involvement 11. information, advice and advocacy 12. partnership working 13. benefits and resources 6

7 The survey of parent carers asked two questions what happened and what should change under the headings of the service ambitions and quality outcomes, including experiences of the route to diagnosis, access to health, adult social care and mainstream services and support. The feedback included examples of good practice, although parent carers also told us they had experienced high levels of frustration and anxiety when trying to secure a formal diagnosis and felt no clear, consistent pathway or referral process was evident. There is a lack of good information available particularly around further education and a lack of consistency in the message given to people about their entitlement to an assessment, financial support and employment opportunities. There seemed to be limited understanding of personal budgets and access to alternative accommodation. The things to change included improved awareness training and early identification procedures, listening to parent carers, more practical and emotional support and a named health or social care worker to undertake annual reviews, to help each person reach their full potential. There is also a need for joined up working, shared information and the removal of bureaucracy and barriers to services. This was a very detailed piece of work which provided a picture of the experiences of people with autism and their carers. The summary document produced by one of the parent carers has been used to plan the work stream activities will be used to inform discussions which will take place to implement the Action Plan. In order to take these issues forward there will be some mapping processes undertaken first, to determine what currently exists, followed by focus group discussion on particular topics; to explore ways of improving partnership working; to avoid duplication of effort and target resources at priority areas. In addition to the above feedback, people with learning disabilities, which may include adults with autism, have also told us that they:- feel that GPs are improving in how they work with people with learning disabilities; However, some service users still feel that reception staff need to make it easier to get a longer appointment time if it is needed; feel that they have better access to easy read information but more needs to be encouraged, particularly in GP practices; feel safer in hospital but feel they need to know more about how to complain if they need to; wanted more opportunities to voice their views and to be consulted about their experience of accessing health services as well as changes that affect them; and felt they wanted greater involvement from NHS Managers and commissioners to understand the changes to mainstream health services not only from the Learning Disability Partnership. The discussions highlighted that there is more to do in terms of identifying how many people there are in Redbridge with ASD. Data is held in adult social care teams on people already getting some support, sometimes on different IT systems. However, there is a need for more consistent information to be collected electronically and for mechanisms to enable systems to share data by using a common reference number. The criteria, which determines whether an individual gets support from Community 7

8 Mental Health Teams or the Learning Disability Partnership, needs to be clarified to ensure that people do not slip through the net. There is also a gap in knowledge about the number of people who do not currently access services, it may be because they fall just outside of the eligibility criteria or because they are people with Asperger syndrome who may be higher functioning and appear to be managing. Some may be at risk of reaching crisis point, for example they may be experiencing family breakdown, homelessness or poverty. It would be helpful to be able to offer preventative support to those at risk, which could include help to take up mainstream services. This requires agencies to work in partnership to consider how external factors, i.e. the wider determinants of health such as housing, educational attainment, worklessness, etc, can impact on mental health and sometimes result in people with ASD entering the criminal justice or care systems unnecessarily. We need to clarify how services work together to provide preventative support for people with complex needs, which might include autism, physical disability and a mental health problem. This would improve the quality of the user experience and cost effectiveness and prevent people from falling through the net. An example of how we could reach people with ASD would be to explore the development of a local Autism Alert Card. It works on the same principal as other similar cards such as the Diabetes card. The benefits are that by highlighting that the cardholder has an ASD and if they find themselves in difficulty, the card contains details of the contact person who will act as an appropriate adult or intermediary. There are a number of issues that need to be considered before putting this in place, most importantly, to ask people with autism whether this is a service which they would welcome. During the informal consultation period, at the Community Development Workshop in December 2011, the idea was raised and was welcomed by the statutory and voluntary agencies, as well as the parent carers who were present. It was agreed that this should form part of the consultation process, which will hopefully reach a range of people including those currently not in the adult social care system. A number of local service providers were asked to consult with their service users who are known to be on the autistic spectrum to find out if the card would be a good idea. The feedback from this exercise and through the Parent Carer Focus Group was positive and so it was decided to go ahead and develop a Redbridge Card in partnership with the Disability Consortium and the Centre for Independent and Inclusive Living, while recognising that carrying the card would always be a matter of individual choice and may not be an option that everyone would choose to take up. There are a number of councils that have already introduced the Autism Alert Card and below you can see an example from Autism Anglia. The Scheme is recognised and supported by the local Police and those in the surrounding areas. Below is an example of the Autism Anglia card and we hank them for their advice on developing a Redbridge model. 8

9 5. Progress on Overarching Priority Areas 5.1 Training of Staff who provide services to adults with Autism The National Strategy and local feedback clearly highlighted that training, ranging from awareness raising to more specialised training for professionals diagnosing and working with people with ASD, was a key issue. In Redbridge there are a number of partnership groups and forums that work with a range of organisations from the statutory, private and voluntary sector in terms of learning and development opportunities on priority areas across NHS and social care. Existing forums such as the Redbridge Learning Collaborative and the Outer North East London Learning & Development Partnership are a good source of information and good practice examples. Participants at the Community Development Workshop made the following comments with regard to the issues to be considered when planning training: Needs to be Autism specific; Will be required on use of proposed Alert Card; Need to share good practice; Needs to cover a wide range from awareness through to diagnostics; Cover general information and the Redbridge way; How to make reasonable adjustments ; and Consistent training and key messages for all-including service users, carers, assessors, commissioners and providers. 9

10 An outline learning & development proposal was considered at the January 2012 Redbridge Working Group meeting. The proposal suggested that the approach should be modular, at two levels i.e. general and specialist. Further work took place to firm up the content of each module, assess the numbers of staff requiring the training and to agree how it would be delivered and by whom. The Parent Carer Focus Group was involved and commented on the draft proposals and attended some of the sessions. This training sits alongside other training required for experienced practitioners. Job Centre Plus, the Metropolitan Police, Community Safety representatives and a range of other providers who attended the Community Development Workshop and expressed an interest in taking part in awareness training, have since taken the opportunity to take part in some of the sessions. Approaches have been made to GPs and their Practice Managers and as a result awareness raising sessions have been set up at local health centres for groups of NHS Practice staff and a slot at one of the GP Protected Learning sessions has been arranged As the roll out of the training modules begins, each session is evaluated to ensure it has been relevant and effective for participants. Feedback to date has been very positive and attendance has been varied in terms of the agencies taking part and the range of professionals involved. To date over 100 people have attended the awareness raising and follow up what you need t know modules. 5.2 Identification and diagnosis of autism in adults leading to assessment of needs for relevant services Assessing the number of adults with autism in Redbridge In terms of collecting and collating relevant data about adults with autism, PANSI (Projecting Adult Needs and Service Information System) projections below show the following for Redbridge :- Table1: Autistic spectrum disorders (accessed August 2011) People aged predicted to have autistic spectrum disorders, projected to 2030 Autistic spectrum disorders - all people People aged predicted to have autistic spectrum disorders People aged predicted to have autistic spectrum disorders People aged predicted to have autistic spectrum disorders People aged predicted to have autistic spectrum disorders

11 People aged predicted to have autistic spectrum disorders Total population aged predicted to have autistic spectrum disorders ,716 1,789 1,850 1,907 1,956 Figures may not sum due to rounding Crown copyright 2010 The information about ASD is based on Autism Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007 which was published by the Health and Social Care Information Centre in September The prevalence of ASD was found to be 1.0% of the adult population in England, using the threshold of a score of 10 on the Autism Diagnostic Observation Schedule to indicate a positive case. The rate among men (1.8%) was higher than that among women (0.2%), which fits with the profile found in childhood population studies. A more recent study updated the above information and estimated that the prevalence of autism spectrum disorders among adults aged 18 years and over is now 1.1% of the population, representing approximately 450,000 cases of autism nationally. Based on this, the local picture would be that approximately 2250 adults over 18 would have an autistic spectrum condition (based on ONS mid 2010 Redbridge population estimated at 204,556) The report Prevalence of Disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP), Baird, G. et al, the Lancet, 368 (9531), pp , 2006., found that 55% of those with ASD have an IQ below 70%. The National Autistic Society states that 'estimates of the proportion of people with autism spectrum disorders (ASD) who have a learning disability, (IQ less than 70) vary considerably, and it is not possible to give an accurate figure. Some very able people with ASD may never come to the attention of services as having special needs, because they have learned strategies to overcome any difficulties with communication and social interaction and found fulfilling employment that suits their particular talents. Other people with ASD may be very able intellectually, but have need of support from services, because the degree of impairment they have of social interaction, hampers their chances of employment and achieving independence.' The prevalence rates have been applied to ONS population projections of the 18 to 64 population to give estimated numbers predicted to have autistic spectrum disorder to In addition to the above projections, there is emerging limited evidence from a number of different pieces of research which suggests that the overlap between autism and other mental health conditions is substantial. Current data collected from recorded incidence of autism in Redbridge shows a lower figure. This is as would be expected as the data only shows numbers of people engaging with health and social care support services Locally, following the publication of the first overarching Redbridge Joint Strategic Needs Assessment (JSNA) in 2008, it was agreed that further in-depth joint strategic needs 11

12 assessments, focussing on the health and social care needs of a number of vulnerable groups including adults with learning disabilities and complex needs would be undertaken. During 2010 the JSNA of Adults with Learning Disabilities and Complex Needs was published, providing a more detailed understanding of existing and emerging health and social care needs and also identifying current provision and best practice. This JSNA used a number of data sources to gain an indication of the prevalence of people with a learning disability including autism, living in Redbridge. This included Primary Care Practice Registers, the Learning Disability and Complex Needs Database, maintained by the Redbridge and Waltham Forest Learning Disability Partnership, Redbridge Adult Social Services Care First Database and using national prevalence and other local data to determine the local position. However it was noted that there were limitations to the data collection in that often it included only those accessing health and social care services and some of the data was not being held electronically. The following graph shows that nearly half of adults with learning disabilities and complex needs in Redbridge have complex health needs; however significant proportions have physical disabilities or behaviour which challenges services. Table 2: Learning Disability and type of complex needs 50% 47% 45% 40% 39% 35% 35% 30% 25% 23% 24% 20% 20% 15% 15% 10% 5% 2% 0% Physical Disability Sensory Disability Behaviour Which Challenges Autistic Spectrum Disorder Complex Health Needs Mental Health Needs Forensic History Severe/ Profound LD Source: Redbridge Learning Disability Partnership, October

13 Table 3: Information collected in 2010/11 from Teams and Service Providers shows the following information:- Team/service No. of adults No. of adults with diagnosed with suspected but no Autism diagnosis of autism Mencap 5 Mildmay Locality Base 3 Mulberry Locality Base 1 1 NELFT Psychology 46 4 (Redbridge) Advocacy 9 (Redbridge & Waltham Forest) May Rd and 1 Trumpington Rd (Redbridge) Community Nursing 2 (Redbridge & Waltham Forest) Outward 1 (Redbridge) Advocacy 9 (Redbridge & Waltham Forest) Community Nursing 2 (Redbridge & Waltham Forest) Totals 79 5 We are currently working to gain a clearer picture of the number of people with ASD in Redbridge and have continued to gather data from a number of different sources. As at July adults aged 18 + with a learning disability were known to the local authority and of those an estimated 20% (160) will have ASD. The context for these figures remains that the data relates only to those accessing community health and social care services and therefore may be an underestimate; it also relies on accurate diagnosis, coding and recording of cases. Preventative support services would be particularly important for those who do not meet the Fair Access to Care Services (FACS) eligibility criteria for adults. Further, more in-depth work is currently underway through the National Institute for Health Research: School for Social Care Research, which has developed a way of predicting future need for services for people with learning disabilities. They will be developing their approach by extending the research to include all young adults with disabilities including ASD. Redbridge is one of 10 local authorities in England that the Institute will be working with to develop an open access web-based tool that can be used to predict future need for social care services for younger disabled adults. In addition, a new Redbridge Joint Strategic Needs Assessment 2012 has been produced and includes a section on the needs of people with Autism. 13

14 Developing a clear local diagnostic pathway Whilst it is recognised that in Redbridge we have robust information about those people who are eligible for adult social services, through social work assessments, annual health checks etc, for those that fall outside of the criteria for accessing Learning Disability or Mental Health services it is a very different experience. This is an area which is most challenging due to the issues identified through the Working Group including no new resources, limited local expertise and lack of co-ordination of preventative services. Currently for example, people with Asperger Syndrome who do not have significant psychiatric issues cannot access mental health or learning disability services. This means that they are unable to get a diagnostic assessment. If they do experience problems, they will also be unable to receive prompt timely interventions, resulting in crisis management which is both unhelpful and likely to be more costly than timely preventative interventions. Work is underway to develop a care pathway, using specialist practitioners which, in addition to the Learning & Development proposals, will provide support for the workforce to improve competency levels amongst front line staff and increase opportunities to work directly with people with autism who are not able to access existing provision as detailed above. It would be imperative that any new pathway will link in to mainstream support services to provide preventative solutions for people who would otherwise fall through the net. The lead Commissioner in Adult Social Services is working closely with the North East London Foundation Trust (NELFT) and NHS ONEL as well as Lead Commissioners from neighbouring outer north east London Boroughs, to explore options including the viability of adopting aspects of the Bristol model, as shown in Appendix C through the creation of a virtual team. A Lead officer has been appointed to take this forward. Consultation on the model will involve service users and carers. 5.3 Planning in relation to the provision of services for people with autism as they move from being children to adults Work in Redbridge has been ongoing to develop the support for young people going through the transition to adulthood. The Transition Protocol and Pathway was developed in partnership with young people and parent/carers to improve the experience of moving on from children s services. This process has included the development of a Transition Strategy Group and individual Transition Action Plans. Transition continues to be overseen by a Transition Steering Group, and young people aged 14+ are tracked through the process by the Transition Finance Group. This year we have also established a Transition Monitoring Group, made up of senior managers who meet quarterly to look at any specific cases where there may be barriers to transition working well. This group is able to make quick decisions about how these cases can be progressed. All eligible young people who finished school in 2011 were supported to move onto a personal budget. A local organisation provided brokerage to help the young people to develop support plans. 14

15 Systems continue to be developed to ensure that personalisation supports the move into adulthood and it is our intention to improve working relationships across adult and children s social services, making sure that services that are being developed match the needs of young people and this work is ongoing. Table 4: Young People in Transition from children s to adult services, with a primary or secondary diagnosis of ASD (January 2012) Age Number of young people 14 years years years years years 33 Total 105 In addition to the In Depth Needs Assessment for Adults with learning disabilities and Complex needs, a Health Care Needs Assessment of Children with Disabilities was also being undertaken, in response to Aiming High for Disabled Children, which was the national policy directive focussing on key issues including transition support for disabled young people and their families. The Health Care Needs Assessment stated that it was unable to identify accurately the number of children and young people who have a disability living in Redbridge. However estimates can be made by using national prevalence and data generated by the take up of services. The table below shows the number of children identified by the London Borough of Redbridge Children with Disabilities Team as having a disability and eligible for services. In total there are 494 children. Autism and learning disabilities are the top two disabilities in this group constituting more than half of the total number. 16% of children were identified with complex health needs. (Complex health needs were due to; cerebral palsy, seizures, developmental delays, visual impairment, hearing impairments, communication & learning difficulties and feeding problems). Table 5: Children known to the Children with Disabilities Team services Primary Diagnosis Numbers Percentage Autistic Spectrum Disorder Learning Disability Complex Health Needs Cerebral Palsy 45 9 Down Syndrome

16 Learning Disability/ Physical Disability 13 3 Physical Disability 11 2 Sensory Disability 5 1 Grand Total (Source: Children with Disabilities Team (CWDT), Redbridge Children s Trust, October 2008) Note: This shows the number of children on London Borough of Redbridge systems identified as having a disability. This does not include all children that the Children with Disabilities Team work with and is therefore an underestimate. In addition we are aware that there are 292 children and young people in Redbridge who have a statement, where their primary condition is an Autistic Spectrum Disorder. These figures will not include those with high level Aspergers or those where autism is a secondary condition. The Health Care Needs Assessment concluded that local and national data suggest that there is an increase in the number of children with disabilities. Service providers have experienced an increase in the numbers of children with complex health needs; however data systems to capture the complexity of needs are not in place. It also suggested that service improvement for children with disabilities could be achieved through service redesign, improved access to services with the development of clear pathways of care and the implementation of best practice. Among young people turning 18 and known to CWDT in Redbridge, 90% are estimated to require Learning Disability Services. Table 6: Numbers of young people known to the Children with Disabilities Team of Redbridge Children s Trust, (as of January 16

17 2012). Source: Redbridge Children with Disabilities Team. (CWDT) 5.4 Local planning and leadership in relation to the provision of services for adults with autism In order to take the development of a Redbridge Plan forward the Chief Officer Commissioning & Provision in Adult Social Services has been identified as the Redbridge Autism Lead Officer. This will ensure that progress can be made in terms of developing integrated commissioning and other aspects of the 10 steps to progress. This Chief Officer Chairs the multi agency Autism Plan Working Group which includes representatives from Housing; Job Centre Plus; Connexions; Children s and Adult Social Services; Clinical Staff from NELFT; a General Practitioner lead; as well as Commissioning. The Redbridge Adult Prevention & Early Intervention Strategy, which was endorsed by the Shadow Health & Well Being Board in September 2011 made reference to the Quality Outcomes included in the National Autism Strategy, highlighting the close relationship between NHS, Public Health and Adult Social Care Outcome Frameworks as well as the new Mental Health Strategy and Outer North East London NHS plan for Quality, Innovation, Productivity and Improvement (QIPP) see Appendix A. This will help to raise the profile of the needs of people with Autism at a strategic level. A Children s Prevention Strategy is currently under development and the Adult and Children s Strategies have been used to inform the development of the Redbridge Health and Well Being Strategy during

18 Discussions are underway to ensure that the multi agency Autism Working Group is appropriately linked in to the decision making processes through the current Strategic Partnership framework and to the Redbridge Health and Well Being Board in due course. Part of the process will be to ensure input from the Prevention, Early Intervention & Inclusion Working Group which is responsible for the implementation of the Prevention Strategy, reporting progress directly to the Shadow Health & Well Being Board, and is considering issues such as care pathways and the potential for a First Contact referral form to improve the customer journey. In response to feedback from parent carers and people with autism at open day and task group activities, a need for autism specific day opportunities has been identified. A pilot scheme for eligible people with autism and a general scheme for young people in transition are to be developed by adult social services within existing resources, through service redesign and reasonable adjustments to service delivery. In addition, also in response to identified need, the Daffodils Advocacy Project has recently secured funding for a new one to one and drop in advocacy service called Bridging the Gap to provide an advocacy service for people with a learning disability, including adults with autism who do not meet the adult social services eligibility criteria. The Adult Social Services Commissioning Team have developed guidance for providers on how to make reasonable adjustments to their services to make them accessible to people with ASD and an accreditation framework to improve the quality of day opportunity services. The process includes self assessment, a monitoring visit, time to implement any improvements before a kite mark is issued which demonstrates the service has been assessed as meeting the council s standard of care, quality and safety. Carers and service users have been part of the development process. As part of the development of the Redbridge Housing Strategy, we are exploring how meeting the needs of adults with autism can be linked to work already in place to support others with additional housing support needs such as those with a learning disability (which may already include some adults with autism). Current actions include: Housing Support for people with learning disabilities The Housing Panel meets monthly to review all referrals for supported living and match people to suitable properties; Supported housing is promoted for new placements and we are currently working with a provider to re-model 4 residential care homes into supported living schemes; We have developed a service improvement programme to improve the quality of contracts for supported living including developing more outcome based contracts together with an expectation that providers work pro-actively with service users to develop living skills to move on into more independent accommodation; We are developing accommodation to meet the needs of young people in transition to ensure that people can live with people of a similar age; We are working with older carers to identify potential future housing needs; 18

19 We host an annual housing fair to publicise/increase knowledge of housing options. Recently this was combined with the annual Opportunities Fair so that more people can be reached; We are actively using the London Care Funding Calculator (CFC), for supported living placements, which helps tailor support to meet individual needs and helps to manage the market; We are developing an information directory to include autism accredited services A new Respite Breaks resource directory was published in 2011 which identified services that are accredited for autism or autism friendly; We held open evenings for young people and their families in July 2011; An accessible housing information booklet has been published and will be updated every year; and Commencing a new Floating Support Service to support 20 residents in their own homes to maintain their tenancies The Housing Service is actively taking steps to improve access to appropriate housing and is committed to extending staff awareness through training, of the needs of people with autism that may not be in the care system. A consultation on proposed revisions of the Council s Housing Allocation Scheme and Tenancy Strategy will be consulted on from November Consideration will be given to establishing a framework of autism accredited supported living providers. Examples of Employment/Volunteering The examples below also relate to people with a learning disability and may include people with ASD. They illustrate good practice that could be extended more widely with appropriate support: The Ray Park Café provides supported employment for catering support workers as well as regular work experience placements for young adults leaving school and local residents with a learning disability; The Out There project offers people with a learning disability work experience placements and opportunities to learn employability skills; Sprout There provided by Uniting Friends, offering the opportunity to work on an allotment plot, learning how to sow and grow fruit and vegetables; The Cherry Tree Café is a social enterprise scheme that trains and employs people with learning disabilities; Snaresbrook Arts Project is a social enterprise that teaches people with a learning disability different arts and crafts which are sold at markets and other outlets; and 6 people with a learning disability are now trained as wiki editors. They are creating accessible easy read websites and have delivered training. The Work stream set up by the Autism Working Group, to consider Community development opportunities, held a stakeholder workshop in December Attendees included the Metropolitan Police and Safer Communities Team, Leisure Services, Job Centre Plus and Supported Employment agencies, Equality and Diversity Officers, housing and other providers. They worked through a series of questions and came up with a number of proposals and solutions to help bring about change within their own services and within the community. Many of the issues raised require partnership and co-operation across more than one agency and can be considered as part of the ongoing work of the Prevention Strategy. 19

20 The Parent Carer Focus Group suggested that it would be beneficial to seek user involvement in some of the project areas as well as seeking general comments from people with ASD on the overall Plan. It was also highlighted that there are a number of Projects currently in development that will improve the prospects of training, volunteering and employment for people with autism and that they should be linked together to ensure that we maximise the opportunities and resources presented, ensuring cost effectiveness and avoiding duplication of effort. For example having submitted a Private Members Bill to Parliament, calling for more supported employment opportunities for young people with autism, Lee Scott MP is working with Interface a local voluntary group and Children s Services to explore how to take this forward. It will link in to other work currently underway through Adult Social Services and the Corporate Inward Investment and Enterprise Team to work more closely with support agencies and local businesses. The Centre for Independent and Inclusive Living Redbridge submitted successful applications for resources towards supported volunteering opportunities from the Department of Health / Office for Disability Issues and the Council, in partnership with Redbridge Concern for Mental Health and the Peace Garden. The Councils Grant process is targeting resources towards capacity building to meet emerging local needs providing opportunities to respond to areas of increasing need identified by the voluntary sector. Key issues raised at the Community Development Workshop, which were used to inform the development of the Action Plan and are currently being implemented are:- Information, Advice & Advocacy Check all suggested contacts are on My Life the Adult Information Directory; Collect appropriate information, ideally in advance, to ensure arrangements are in place to support people with autism and get the best from the contact with themget it right first time (potential to link into proposals for universal referral form); Adapt Oxfordshire Useful Information & Top Tips leaflet for use at front line services, including Leisure and Housing; Produce a guide to examples of reasonable adjustments ; Identify an Autism Champion in front line teams, schools etc; and Ensure consistent information is relayed to service users and carers about their entitlements-maybe a checklist or flow chart of what you can expect including signposting for access to Information, Advice & Advocacy. Commissioning Explore viability of Redbridge Alert Card and commission a local service provider to produce (exploring funding options and possible partnerships); Include reference to providing autism friendly services in contracts and explore opportunities for formal accreditation; Identify options for supporting carers of people with ASD, to help plan for future changes in circumstances ; and Identify how advocacy is provided for people who are assessed as not being eligible for Adult Social Services, based on the Government guidance on Fair Access to Care Services (FACS) criteria. 20

21 Employment Training and Volunteering Establish Task Group to consider how strands of recent supported employment training and volunteering initiatives can be brought together to ensure opportunities to benefit people with autism are maximised; Work with local colleges to improve parent carer liaison; Engage with the councils Corporate Regeneration Team to improve relationships with employers; Clarify route for reinstating benefits following a period of temporary employment; Clarify Job Centre Plus role in identifying where ASD is an issue and explore how their time limitation issues can be overcome. Data Collection & Management and other Strategic Planning Issues Include reference to autism in Diversity Strategies and explore how ASD could be recorded as part of diversity monitoring; and Improve data collection to assist with future planning and explore flagging of ASD on data systems. 21

22 APPENDIX A NHS Outcomes Framework Preventing people from dying prematurely Adult Social Care Outcomes Framework Public Health Outcomes Framework Preventing people dying prematurely and tackling health inequalities; 6 Cross cutting mental health objectives 7 Fulfilling and Rewarding Lives Quality Outcomes QIPP opportunities Opportunity 15: Right Care - Staying Healthy (prevention) Enhancing Quality of Life for people with LTC. Helping people recover from episodes of ill health or following injury Ensuring people have positive experience of care and support Treating and caring for people in safe environment and protecting them from avoidable harm Enhancing the quality of life with for people with care and support needs Delaying and reducing the need for care and support Ensuring that people have positive experience of care and support Safeguarding Adults whose circumstances make them vulnerable and protecting from avoidable harm Helping people to live healthy lifestyles, make healthy choices and reduce health inequalities reducing the number of people living with preventable ill-health and RHI Tackling factors which affect health and wellbeing and health inequalities Protect the population s health from major emergencies and remain resilient to harm More people will have good mental health More people with mental health problems will have good physical health More people with mental health problems will recover More people will have a positive experience of care and support Fewer people will suffer avoidable harm; Fewer people will experience stigma and discrimination Adults with autism are included and economically active Adults with autism are living in accommodation that meets their needs Adults with autism are benefiting from the personalisation agenda in health and social care, and can access personal budgets Adults with autism achieve better health outcomes Adults with autism, their families and carers are satisfied with local services Adults with autism are involved in service planning Adults with autism are no longer managed inappropriately in the criminal justice system Opp.8: Right Care Stroke; Opp.18: LTC management Opp.9: Right Carecardiac care Opp.17: Right Care frail elderly; Opp.20: mental health and learning disability services. Opp.12: Right Care-shift of acute activity to lower cost and more appropriate settings of care; Opp.19: End of life 22

23 APPENDIX B. 23

24 APPENDIX C

25 APPENDIX D Redbridge Plan for Adults with Autism CONSULTATION FEEDBACK FORM 1. Your Name: Organisation. Address:.... Tel address: 2. Do you agree that we have got the right priorities in the plan? YES NO If No, please explain why and what you would have liked us to include 3. Do you agree that the tasks listed in the Action Plan will help achieve the desired outcomes, including developing an Autism Alert Card? YES NO If no, please say what else we could do