Perth & Kinross Council Service Map

Transcription

1 National Autism Services Mapping Project Perth & Kinross Council Service Map September 2013

2 National Autism Services Mapping Project Perth and Kinross Council Local Service Map Contents 1 Background to the National Mapping Project Methodology How the service map is organised Background for your area What we asked and who responded to us Quality of Life Outcomes What People with Autism 1 told us What Parents and Carers 2 told us Statutory and Voluntary Services perspective A Summary of Findings in relation to the 10 Indicators of Good Practice Scenarios Moving Forward Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them. It is a spectrum condition, which means that, while all people with autism share certain areas of difficulty, their condition will affect them in different ways. Aspergers syndrome is a form of autism 2 Definition of a carer Throughout this document we use the term "carer" to describe individuals who provides unpaid support to a relative family or friends who has autism. The majority of individuals are parent carers but the term carer also describes other family members such as siblings, grandparents or friends who provide substantial unpaid care. We use the term support worker to describe individuals providing paid support to individuals with autism 1

3 1 Background to the National Mapping Project The National Mapping Project has been a short term fact finding exercise and analysis of information relating to the delivery of services for individuals with autism in your area. It is designed to map out existing service provision across Scotland in order to build up a full picture of the national position which will help inform future local decisions on autism coordination on who will do what and where, and influence national decisions on the investment of Scottish Government funding for autism in the future. The Service Map presented below is a snapshot of the situation in your area with regard to the delivery of services for people with autism. It is predicated on the information collected from the desk research into policies and practice, people we spoke to at the focus groups and the questionnaires completed by individuals in your area. In some areas there was not a full representation of all stakeholders. The corollary of which is that those who did respond will clearly have had an impact on the picture we have drawn. The Service Map is not the complete story of the services you deliver in your area, those responsible for the delivery infrastructure already in place and service users will both have additional information not recorded here due to the short term nature of the work and reflective of the level of engagement with the Project. However, together with the national findings and knowledge of your current delivery, it is hoped this service map will help inform the design and delivery of your Autism Action Plans as agreed under Autism Strategy funding to local authorities. 2

4 2 Methodology The Mapping Project gathered information in three ways: Desktop research in relation to Data and Strategic Policy Online questionnaires for: People living with Autism Carers Statutory providers Service providers Workshops with: People living with Autism Parents and carers Multi-agency groups The Aims of the Workshops were to identify: People living with autism: Carers and parents: Multi-agency groups: I. To gather experience of people with autism about the places, people and activities that help them have a meaningful life II. Gather information about how the core services contribute to having a meaningful life III. Gather ideas of what might happen to improve things and what difference that would make I. To have a better understanding of what carers want to see in their local areas II. To have a better understanding of the local areas and what is making a difference for people living with autism and their families III. To identify what would make a difference for them I. To use the 10 indicators for developing best practice as a baseline for discussion II. To gather information about how services work in partnership together III. To explore the depth of partnership working IV. To provide knowledge about the impact for people with autism, through identifying the challenges and gaps in services 3

5 3 How the service map is organised From the information gathered throughout this exercise Mapping Coordinators identified a number of recurring themes. It also became apparent that the themes could be arranged under aspects of delivery that individuals talked about. These were: People, Processes, Services, Specialist Services and those issues which were specific to Parents and Carers. People Processes Services Autism Knowledge and Awareness Community and Social Opportunities Environment including sensory Inclusion/ Acceptance of autism People/ Professionals who understand Reasonable adjustments to accommodate autism Transport and Rural Issue Carers/Family Support including groups/listening to carers/carers assessment/named person Communication and Signposting Diagnosis - All aspects Information/Data Sharing Intervention (universal for all services Multi-Agency/Partnership/ Pathway, Communication and Co-ordination of services Prevention (early intervention) approach Autism Planning Structures Quality of life/wellbeing/feeling Training all aspects For professionals a framework for training Advocacy Criminal Justice including Police/Autism Alert Card Education/Further Educations including preschool/mainstream and autism specific Employment/Employ ability Housing Respite Services - Access/Gaps/perfor mance Service Responsibility including lack of service for people with Asperger s and high functioning autism Transitions - all major life transitions Specific Services Autism Specific Services for Children and Adults Parents and Carers Parents/Carers as equal partners Carers/Family Support 4

6 For coherence with the Scottish Strategy for Autism the themes have been for the most part organised within the service map according to the Ten Indicators for best practice in the provision of effective services as laid out in the Scottish Strategy for Autism. A particular focus has been offered on issues specific to Parent and Carers and to Quality of Life outcomes for individuals with autism. 4 Background for your area The prevalence estimates in the Public Health Institute of Scotland (PHIS 3 ) ASD Needs Assessment Report suggested 60 in every 10,000 people have autism. However The Scottish Strategy for Autism (Nov 2011) 4 reports that more recent studies estimate that the prevalence of autism in children and adults in Scotland is around 1 in 100. The Scottish Strategy for Autism 2011 reports the estimated prevalence figures by local authority area (2005 figures.) In Perth and Kinross in 2006 the population was The estimated autism prevalence of 90/10,000 suggests that 1262 people are estimated to have autism in Perth and Kinross. According to Scotland s 2011 Census the population of Perth and Kinross is 146,700. Using the estimated prevalence of 90 per 10,000 detailed in the Scottish Strategy for Autism there would be an estimated people with autism in Perth and Kinross. The Scottish Consortium for Learning disabilities (SCLD) reports (esay 11) 5 that there are 2992 adults in Scotland with autism who are known to local authorities, most of these adults have a Learning Disability (LD.) SCLD reports that there are 86 adults with an autism diagnosis in Perth and Kinross. The Additional Support for Learning and Young Carers Report to Parliament 6 (2013) states that in Perth and Kinross there are 4,596 (recorded) children and young people in education who have additional support needs. The report highlights that in Perth and Kinross 214 (recorded) children and young people have autism in Education. Perth and Kinross have a joint strategy for Learning Disability services Better lives for people with a learning disability and those on the autism spectrum This strategy is for people with a learning disability (LD) and those with autism and is aimed at adults and older children who plan to leave school education. It is also stated that LD services aim to meet the needs of individuals who have autism with no LD. The strategy outlines 12 pledges: /

7 Pledge 1: listening to, communicating with and involving service users, Carers, other important people and services in the community Pledge 2: Helping people to live independently, safely and to enjoy life in their own home or in homely settings and have access to enabling and supportive networks Pledge 3: Supporting people to improve physical, mental and spiritual well-being Pledge 4: Building friendships, loving relationships and active lives Pledge 5: Staying safe at home and in the community Pledge 6: Delivering transitions: Ensuring the move from school to adult life is managed well, so young people can access all possible opportunities for a rewarding life Pledge 7: Improving further education opportunities Pledge 8: Helping to get a job or working as a volunteer Pledge 9: Helping Carers and families supporting people to continue in their caring role, to maintain their health, well-being and a chance for a rest when they need it Pledge 10: Taking control and making choices (personalisation) Pledge 11: Better lives in older age. Making plans early enough to make sure service users and their Carers are well supported, safe and cared for as they grow older Pledge 12: Local delivery of the Scottish strategy for autism (2011) The Perth and Kinross Joint strategy for adult Carers and parent Carers ( ) is aimed at adult Carers caring for a child or adult; Carers caring for someone with autism is referenced as an example in the strategy. The strategy states that Carers have the right to support, information and services. During consultation for this strategy Carers stated that a parent/carer peer support group with an autism focus is required. The Joint strategy for physical disability (2010/ /2014) recognises that people may have a range of needs covered by different strategies, with specific reference made to autism. The joint mental health and well-being strategy ( ) also takes into consideration the impact of other strategies such as the National strategy for autism and the Perth and Kinross joint strategy for LD services. The Housing and community care employability network development plan ( ) was designed to support people who may face additional challenges to assist with employability; specific reference is made to people with learning disabilities. The local housing strategy 6

8 ( ) states that there is a need for a better range of housing support services for people with an LD, stating that this as a priority. Perth and Kinross launched the transitions into the community project in April 2012 which aims to improve opportunities for children and young people within the community and support into adulthood. The project aims to provide opportunities and involvement of the person with autism and their families during transition planning allowing them to directly influence the shape of their future care and support services as opposed to fitting people into services. Perth and Kinross have established a Local autism network with representation from core services with a view to widen this representation. Autism Initiatives have recently launched the opening of the Perth and Kinross One Stop Shop which is for people aged 16+ living in Perth and Kinross with autism. 5 What we asked and who responded to us A desk top research exercise was carried out into strategies and policy relating to autism in Perth and Kinross. 31 people took part in the multi agency workshop including people from health, social work, education, further education, police, employment, housing and service providers. In the Multi agency workshop people were asked: To score how their service is currently doing in relation to the ten indicators of best practice as detailed in the Scottish Strategy for Autism Discuss a number of case studies detailing what the response to the case study would be in Perth and Kinross Indicate the breadth and depth of partnership working One focus group was carried out with Carers involving 12 Carers. All Carers were caring for someone with autism below the age of 16. A second focus group was arranged however this was cancelled due to low confirmed attendees. One meeting was carried out with a Carer on a 1:1 basis. In the Carer workshop people were asked: To score and comment on their experience of service provision relating to 7 core services: Care and support, health, education, transitions, employment, housing and Criminal Justice services. As a group Carers were asked what is working well and possible areas for improvement in Perth and Kinross. 7

9 The LA and service providers were contacted to assist in gaining feedback from people with autism, however this was not achieved. Online questionnaires for statutory agencies, service providers, Carers and individuals with autism were distributed through the Local Authority and service provider networks in Perth and Kinross. In total, 42 people in Perth and Kinross responded to the online questionnaires. There were 13 respondents from statutory agencies. 12 respondents from service providers: 2 providing services for children, 2 providing services for adults, 8 providing services for both children and adults. 11 Carers responded: 8 respondents were caring for children and 3 respondents were caring for adults. 6 individuals with autism responded. Focus Groups Nos Questionnaire responses Nos Multi agency inc Service 31 Multi agency 13 providers Service providers 12 Parent/Carers 12 Parent/Carers 11 People with autism 0 People with autism 6 6 Quality of Life Outcomes What People with Autism told us. Key to codes: the following codes indicate, throughout the document, the source of the data i.e. if the information has been gathered from the questionnaires or the workshops and from which group. Please note that where small numbers responded in any area and there was a possibility of identifying an individual, that information has not been directly quoted and has instead been used to ascertain a trend along with other quotes, information or data. M for multi agency workshop C for carers workshop I for individuals with autism who took part in a workshop or completed workshop tasks individually SAQ for Statutory Agencies Questionnaire SPQ for Service Providers Questionnaire CQ for Carers questionnaire IQ for Individuals questionnaire QQ for quantitative data across national responses to questionnaires Quotes from individuals are in quotation marks 8

10 Quality of Life Outcomes Community and social opportunities Inclusion/ Acceptance of autism What s working well? Local service Perth Autism Support (PAS) provides a service for children under the age of 16. The service was said to provide inclusion into the community, friendship opportunities, groups are small and manageable "child gave his first high five which was a breakthrough" (CQ, C) 78% of respondents from the statutory agency questionnaire said that opportunities for social interaction were included in care plans (SAQ) PAS was said to offer activities for the whole family, inclusive of siblings and extended family What s not working well? Some respondents felt that some services do not challenge the person with autism to reach their full potential (C) reporting that there is a "lack of opportunities to promote selfworth, boost self-esteem and confidence, to work and feel useful" (C, CQ) It was felt that an increased effort is needed to involve the person with autism, promote and offer choice (C) 11% of respondents said that they feel included in their local community (CQ) Respondents reported that accessing the community can be difficult as a result of sensory difficulties, bullying and a lack of social friendships (IQ) 44% of respondents said that the person they care for had friends or relationships in their lives other than family members (CQ) 82% of respondents said that the person they cared for faced social challenges at primary school (CQ) 100% of respondents said that the person they cared for faced social challenges at secondary school (CQ) It was said that there is a lack of understanding, support and inclusion in mainstream clubs (C) 9

11 (SPQ, C) One parent noted that their child was excluded from the mainstream school football team and had low self-esteem. PAS helped build confidence and inclusion into PAS football team (C) however it was reported that PAS are working toward training in mainstream clubs to address this issue (M) One parent reported a good experience at a local leisure swimming club where the swimming teacher was understanding and inclusive (C) Issues for consideration Some respondents had concerns about the future i.e. what happens when Carers are no longer there to care/support "who will fight when I die" (CQ, C) Opportunities needed for the person to have a purpose in life (CQ) Involve the person, promote and offer choice (C) Increase social opportunities that meet the needs of whole spectrum including access to sport activities and weekend opportunities (CQ, IQ) Support to develop social and independent living skills (CQ, C) Build community capacity (M) Respondents said that: More opportunities are needed to meet others adults with Asperger s Syndrome (IQ) It was highlighted that a safe place is needed to meet others and make friends (IQ) Support is needed in school to help people feel included socially, including support to develop friendships (IQ) To assist with inclusion peer awareness, a buddy system and support to prevent bullying in schools is required (IQ, CQ) It was highlighted that clubs and facilities in the wider community should be accommodating and autism friendly to ensure inclusion (CQ) 10

12 7 What Parents and Carers told us The word cloud below represents proportionately, some of the things that carers felt contributed to a good quality of life and the things that were working well in Perth and Kinross. The larger the word the more often the word was said. However this was not necessarily the consensus of the group. Some Carers felt that individual teachers were understanding and have a personal commitment in that they undertake training in their own time. 2 Carers had good experiences with local swimming clubs with understanding swimming teachers who promoted inclusion. It was the group consensus that the autism outreach officer for PKC was excellent however there was recognition that there are not enough resources as there is only one Autism outreach officer for PKC. The Tuckie café in Crieff was reported to be a place that provided skill and training development opportunities for people with additional support needs that is parent led and provides rural access to a service. The group consensus was that Carers felt that Perth Autism Support was an excellent local service that provided support and services for the whole family in an inclusive environment where friendships can be made. 11

13 In the Carer focus group, Carers were asked to score service provision within 7 core services between poor and excellent. The table below indicates the scores given. Please note that not all carers responded to all questions and some may have given 2 scores if they had a both positive and negative experience. Parents and Carers scores for: How my area is doing Care and Support response Health response Education and Further Education Transitions Employment Housing and Community Support Criminal Justice Services Poor x2 Satisfactory x3 Good x3 Excellent x2 Poor x3 Satisfactory x6 Good x4 Excellent x0 Poor x2 Satisfactory x5 Good x5 Excellent x1 Poor x4 Satisfactory x4 Good x3 Excellent x0 Poor x2 Satisfactory x0 Good x1 Excellent x0 Poor x3 Satisfactory x1 Good x1 Excellent x0 Poor x1 Satisfactory x3 Good x0 Excellent x0 12

14 Specific issues relating to Parents/Carers Parents/Carers as equal partners Carers/Family Support including groups/listening to Carers/Carers assessment/named person What s working well? 91% of respondents from the statutory agency questionnaire said that they sought feedback from carers/service users (SAQ) 100% of respondents from the service provider questionnaire said that they sought feedback from carers/service users (SPQ) Perth Autism Support were said to provide support for the whole family (C) 91% of respondents said that service users/carers were involved in the development of the service that they receive (SPQ) 67% of respondents said that parents/carers were offered a What s not working well? Some respondents reported a lack of partnership working between parents and teachers in education "not so much would be done if I didn't ask or assist on strategies" (C) Respondents reported that there is a lack of involvement of carers and service users "feel isolated" (C) and that carers and people with autism should be consulted in accessible ways (C) 54% of respondents had heard of a carers assessment (CQ) 27% of respondents have a carer assessment/support plan (CQ) 54% of respondents had some level of support as a carer (CQ) 13

15 carers assessment (SAQ) The Carer group were asked to identify top action points which are outlined below: Top action identified by Parents/Carers in (LA) 1. Improve autism awareness and training ensuring this is inclusive of public and private sector workers, mainstream clubs, society and all core services 2. Improve opportunities and access to services in rural areas 3. Improve transitions to be inclusive of moving home, daily and yearly transitions in education Issues for consideration Improve communication and partnership working between school and carers (C) Respondents noted that more support is needed for carers e.g. support/counselling for carers, local support groups for parents (CQ) specialist intervention required for families (SAQ) support and recognition required for whole family inclusive of siblings (CQ, C) Increase carer/person with autism involvement in decision making by consulting carers/individuals in accessible ways (C) The word cloud below represents proportionately, some of the things that carers felt needed to improve in Perth and Kinross. The larger the word the more often the word was said. However this was not necessarily the consensus of the group. 14

16 It was felt that education provision needs to improve for example: consistent 1:1 support in mainstream school, improve support base and resources, teacher training and more awareness and use of the autism took box. Transitions were said to need to improve such as transition planning and consistency concerning school transport. It was felt that some schools should improve access for families with regard to parking to ensure safe transition to school i.e. for Carers who do not qualify for a disabled badge. It was also said that there needs to be more opportunities to access services in rural areas, more social skill development opportunities and awareness raising. It was said that waiting times and support from CAMHS and other services needs to improve before crisis stage. Carers felt that the diagnosis process and post diagnosis support with regard to signposting and advice needs to improve, however a facilitator from PAS stated that their service is now the designated point of contact when people are diagnosed. It was highlighted that an improvement in consistency and training in health, such as GPs, is required as well as an improvement in information sharing and partnership working amongst services and professionals. It was noted that more local support for Carers and respite opportunities are required. It was also highlighted that that more support and funding is needed for voluntary organisations to meet the demand and sustain the services that are offered. 15

17 8 Statutory and Voluntary Services perspective 31 people took part in the multi agency workshop including people from health, social work, education, further education, police, employment, housing and service providers. Agencies attending Focus Groups Nos Health 7 Social Work 5 Education 5 Further Education 1 Police 1 Employment/Employability 2 Housing 1 Service Providers 7 Other 2 16

18 At the multi-agency meeting, people were asked to indicate local progress with the Strategy for Autism against the 10 indicators in the provision of effective autism services as outlined in the Scottish Strategy for Autism. 1 indicates work has not yet begun, 2 is made a start, 3 is good progress and 4 is completed. Below is the mean score from the local multi agency groups. A local autism strategy Good practice indicator Access to training and development A process for ensuring a means of easy access to useful and practical info about ASD An ASD training plan A process for data collection A multi agency care pathway A framework and process for seeking stakeholder feedback Services that can demonstrate that service delivery is multi agency in focus Clear multi agency procedures and plans A self-evaluation framework Mean score

19 9 A Summary of Findings in relation to the 10 Indicators of Good Practice The tables below set out the responses from the information gathered from individuals in your area. They are set out under themes or headings which were developed from the national data sets. Please note: The following Indicators have been grouped together. The information gathered did not distinguish between the two aspirations: 2. Access to training and development to inform staff and improve the understanding amongst professionals about autism. 4. An ASD Training Plan to improve the knowledge and skills of those who work with people who have autism, to ensure that people with autism are properly supported by trained staff. Similarly the following Indicators have also been grouped together for the reasons outlined above: 7. A framework and process for seeking stakeholder feedback to inform service improvement and encourage engagement. 10. A self-evaluation framework to ensure best practice implementation and monitoring. 18

20 1. A local Autism Strategy developed in co-operation with people across the autism spectrum, Carers and professionals, ensuring that the needs of people with autism and Carers are reflected and incorporated within local policies and plans. ASD Planning structures What s working well? There is an Adult LD and autism strategy in place and a strategy group to monitor progress. Autism sits within LD and there is a joint commitment from health, PKC and partners (SAQ, M) It was reported that the Autism outreach officer for children s services is "excellent" but only one officer to cover all of children services. No similar post in adult services (C) What s not working well? Respondents felt that the joint LD and autism strategy does not adequately meet the needs of people with Asperger s Syndrome and the strategy does not cover children services (SAQ, C, M) It was also felt that the carer/service user consultation was not broad enough (SAQ) 62% of respondents from the statutory agency questionnaire said that there was a local autism plan for the area, 15% of respondents said that there was not a local autism plan and 23% of respondents did not know (SAQ) 55% of respondents from the service provider questionnaire said that there was a local autism plan, 27% of respondents said that there was not a local autism plan and 18% of respondents did not know (SPQ) There was no consistent named lead in children or adult services that respondents were aware of (SAQ) 19

21 Issues for consideration Respondents felt that an ASD coordinator would be beneficial (M, SAQ) The Local Autism network are looking to develop a stand alone autism strategy and will provide a portal for those with autism to contribute (M) Greater awareness of the local autism Plan is required for Perth and Kinross across all agencies 2. Access to training and development to inform staff and improve the understanding amongst professionals about autism. 4. An ASD Training Plan to improve the knowledge and skills of those who work with people who have autism, to ensure that people with autism are properly supported by trained staff. Training all aspects. For professionals a framework for training What s working well? 62% of respondents from the statutory agency questionnaire said that there was an autism training plan for their service (SAQ) 82% of respondents from the service provider questionnaire said that they had an autism training plan for their service (SPQ) Perth Autism Support were said to be working with outside agencies e.g. child-minders, scout association What s not working well? It was said that there is low uptake on training/awareness as it is not mandatory (M) and it was felt that training needs to be mandatory and embedded into initial teacher training at a National level (M, C) It was highlighted that there are pockets of excellence in schools but this is not replicated throughout. One respondent reported their experience of college they had teachers who were supposedly trained in autism but it made no difference" (IQ) 20

22 People/professionals who understand to increase knowledge and training (M) Respondents said that individuals can make a difference to peoples experiences of services for example it was reported that some teachers undertake training in their own time due to the schools lack of training and resources. It was said that some teachers have a personal commitment and understanding "child grew to love school because of his teacher" (C) It was said that training needs to improve for all sectors inclusive of the private sector and school transport staff (C) It was felt that positive education experiences are "dependent on the class teacher and how interested they are" (CQ) It was also felt that GP service provision can vary depending on the individual GPs autism understanding (C) Issues for consideration 85% of respondents from the statutory agency questionnaires said that there were further autism related training needs in their service (SAQ) There was a recognition that training needs to be regular and mandatory (SAQ, SPQ) 45% of respondents from the service provider questionnaire said that there were further autism related training needs in their service (SPQ) It was said that awareness and training is required inclusive of pre-school, FE, employment (SAQ, CQ, IQ) It was also said that increased awareness in specialised areas such as dual diagnosis and Asperger s Syndrome is required (SAQ, M, SPQ) Respondents noted that teachers require autism specific knowledge in how to teach children with autism as opposed to using generic approaches designed for LD mainstream school (CQ, IQ, SAQ) 21

23 3. A process for ensuring a means of easy access to useful and practical information about autism, and local action, for stakeholders to improve communication. Autism knowledge and awareness Communication & signposting What s working well? 64% of respondents said their organisation had a role in raising public awareness of autism (SAQ) 36% of respondents said their organisation had a role in raising public awareness of autism (SPQ) What s not working well? It was reported that there is a lack of knowledge and understanding in LD services to support those with high functioning autism and Asperger s syndrome (M) Some respondents felt that there was less involvement and communication from social work when the child went into adult services "Adult services feel disconnected from child services and from parents/person with autism" (C) Issues for consideration Increase awareness and understanding of Asperger s (SPQ) More support and understanding in schools and FE (CQ, IQ) Increase wider community awareness i.e. in mainstream clubs and services, awareness raising for pupils and other parents (M, C, CQ) Improve communication between FE and Carers/service users (IQ, C) Improve communication between child and adult services (C) Clear point of contact needed and improve signposting (C) 22

24 5. A process for data collection which improves the reporting of how many people with autism are receiving services and informs the planning of these services. Information/Data sharing What s working well? 100% of respondents said that their organisation made information accessible about available services (SAQ) One service provider highlighted that they regularly communicate to a network in PKC which includes information regarding events and opportunities for social inclusion (SPQ) 73% of respondents from the statutory agency questionnaire said that there was a clear point of contact for individuals enquiring about autism services (SAQ) 45% of respondents from the service provider questionnaire said there was a clear point of contact in their local area for individuals enquiring about autism services (SPQ) What s not working well? It was said that sufficient information on how best to support someone with autism is not always available from other agencies as a result of limited joint working and information sharing (SAQ) Respondents said that information on what support is available was not easily accessible and never advertised (CQ) The group consensus was that information sharing, partnership working and coordination within and between services and professionals is lacking "fragmented pathway" (C) Respondents reported a lack of support and information for adults with autism on what is available and what they are entitled to (IQ) 55% of respondents received information about the school options available when the person they care for was going to primary school (CQ) 23

25 Issues for consideration Improve information on what is available, information on ASD and interventions, entitlement, where to go for information and support (SPQ, IQ, C)"I do not know what support we are entitled to receive and where to ask for information" (CQ) Respondents felt that a drop in centre for accessible ASD friendly information and one point of contact would be beneficial (CQ) Respondents noted that services need to work in partnership to ensure that information is consistent and not duplicated (CQ) 44% of respondents said that they had received information on self-directed support (CQ) 22% of respondents use SDS (CQ) 6. A multi agency care pathway for assessment, diagnosis and intervention to improve the support for people with autism and remove barriers. Diagnosis all aspects What s working well? Respondents reported mixed experiences of diagnosis with one respondent stating that it was straightforward and explained as we went through it" (CQ) Perth Autism Support are the designated point of contact post diagnosis and provides information and support throughout the process. This is a recent development (CQ, C) What s not working well? Some respondents noted difficulties with the diagnosis process such as the length of time and pathway to diagnosis "took 2 years and no idea of process" (CQ) Some respondents felt that there was a lack of support from core services such as education during the diagnosis process (CQ) Other respondents experiences were "extremely difficult" lack of support in seeking a diagnosis and not being listened to "had to fight all the way" with some respondents reporting that there was no post diagnostic support "failed by professionals" (IQ, C) 24

26 Interventions (universal) for all services Early Intervention approach No comments No comments No comments Increase knowledge and understanding e.g. to ensure early intervention and signs are spotted early (SAQ, CQ) Multi agency/partnership/ Pathway, Communication and Coordination of services It was said that NHS Tayside, CAMHS, have a child diagnosis pathway which is successful and is multiagency (M) 100% of respondents from the statutory agency questionnaire said that they took a multi agency approach to autism service delivery in their area (SAQ) 63% of respondents felt that nursery/pre-school staff worked well together to meet the needs of the person they care for in pre-school education (CQ) 63% of respondents felt that the teachers and professionals worked well together to meet the needs of the person they care for in primary education (CQ) It was said that service users with high complex needs/ld were least at risk of falling through the gaps (M) and it was highlighted that there is a gap in services for some people with autism If you have autism and no LD "in no man s land" (SAQ) 40% of respondents from the service provider questionnaire said that there is a multi-agency approach to autism service delivery in the local area (SPQ) It was said that "Partnership working is an ideal not a reality" reporting no link between child and adult services (SPQ) and that the multidisciplinary pathway was fragmented (SAQ) Furthermore in the carer focus group it was said that an improvement in coordination between services and communication between professionals e.g. child and adult/social work and education is required (C) 25

27 Issues for consideration Improve adult diagnosis (CQ) Care pathway is fragmented "no care pathway" particularly in adult services (SAQ) NHS Tayside are in the process of developing a multi-agency adult pathway for assessment and diagnosis which is in its early stages (M) Improve communication and coordination post 16 and a clear pathway to support (M, C) Improve diagnosis/post diagnosis and signposting support (C, IQ) and provide Support throughout diagnosis process (IQ) Access to services prior to diagnosis and whilst waiting for a diagnosis (CQ) It was highlighted that the one stop shop will bring consistency and care to those who do not fit into services and bridge the gap between child and adult services (SAQ, SPQ, M) Respondents noted that to make a difference "more political power to insist on true and meaningful production" is required (CQ) Improve coordination between core services and partners (M, CQ) including between health and education (CQ) 8. Services that can demonstrate that service delivery is multi agency in focus and coordinated effectively to target meeting the needs of people with autism. Environment including sensory What s working well? One respondent said that adjustments were made in education during break times to meet the sensory needs of people with autism. However three respondents felt that the sensory needs were not always met in education (IQ) What s not working well? Some respondents felt that the environment in GP surgeries was unsuitable (C) Some respondents also felt that the environment at college and university did not address the sensory needs of people with autism (IQ) 100% of respondents indicated they experienced sensory difficulties at school of which 25% of respondents said that they were helped to cope with these sensory difficulties (IQ) 26

28 Reasonable adjustments to accommodate autism Service Responsibility including lack of service for people with Asperger s and high functioning autism Criminal Justice including Police/ Autism Alert Card Education/Further Educations including pre-school/mainstream and autism specific No comments No comments No comments Respondents reported mixed experiences of education, some respondents reporting good communication and information sharing between schools and carers and positive 1:1 support in mainstream school with Additional support (CQ) Some respondents noted that "teachers are well trained at Robert Douglas Memorial " (C) It was highlighted that there are pockets of excellence in schools but this is not replicated throughout (M) Some respondents said that having class room support and trained teachers to identify and meet sensory No comments Respondents highlighted that people with Aspergers Syndrome may not qualify for a service (SAQ) Most people agreed that there is no services for people with Asperger s Syndrome, unless there is an associated LD (SPQ, C, M) "for people with Asperger s Syndrome it is a lottery whether they get access to services" (C) No comments 17% of respondents said that the person they cared for had a coordinated support plan (CSP) at secondary school, 50% of respondents said they did not have a CSP and 33% of respondents did not know (CQ) Some respondents reported that communication between Carers and teachers need to improve (C) It was felt that there was inconsistent support available in mainstream schools and more 1:1 support required (C) and ensuring that the learning environment is appropriate to the needs of the child (C) A number of respondents said that teacher training and awareness and use of the autism tool kit needs to 27

29 needs in education helped (IQ) improve (C) Employment/ Employability Housing 88% of respondents were involved in choosing the preschool service for the person they care for (CQ) Some respondents reported positive employment experiences "feeling valued" (IQ) It was said that support with daily living tasks helps people cope with tasks in the home (IQ) It was said by a number of respondents that there is a lack of employment opportunities, a lack of information and advice on employment options, support in finding and maintaining employment and with the employment process i.e. filling out applications and interviews (IQ, CQ) It was said that there are no housing options within the LA area (C) and that more support is needed in finding appropriate housing and transition support when moving home as well as supporting people to progress toward independence (IQ, CQ) Respite No comments It was said by a few respondents that the eligibility criteria restricts access to respite services for children services (CQ) and that there is a lack of respite/support available locally (CQ) Transport and Rural Issues The Tuckie Café in Crieff was said to provide training and skill development opportunities for people with additional support needs and that people s needs are supported and understood (C) It was highlighted by a few respondents that families have moved house to gain access to appropriate services "service access depends on locality" (C, CQ) 33% of respondents said that their preferred option for primary school provision was in their local area (CQ) A number of 28

30 Autism Specific Services for Children and Adults Services - Access/Gaps/ performance Some respondents noted positive experiences in specialist education stating enhanced 1:1 support within specialist school, suitable environment fit, NHS and SALT on site and assisted in meeting the needs of the person they cared for (CQ) One respondent said that the "ASD base is excellent but is 18 miles away" and that more local services are needed (CQ) Respondents noted positive differences that Perth Autism Support (PAS) had made to their families. PAS have been around for 1 year prior to which it was reported that there were no services. PAS provide courses, social events and the whole family are included "changed our life choices from famine to feast"(saq, CQ) 78% of respondents said that the person they care for has had their needs assessed (CQ) 67% of respondents said that the person they care for has their needs regularly reviewed (CQ) respondents suggested that appropriate primary education provision to meet people s needs is required "not the current post code lottery" relating to education provision and teachers (CQ) A few respondents felt that mainstream does not always meet the needs of everyone (CQ) It was said that there is a lack of adult and older adult service provision (SAQ, SPQ) and difficulties in people not being able to access services across council boundary areas e.g. unable to use Barnardos services in Dundee as live in Perth and Kinross (CQ) Some respondents noted that the eligibility criteria restricts access to services and that more support is required "too disabled to lead an independent life and not disabled enough to warrant extra help" (CQ) Respondents noted difficulty with the school taxi service provision to and from school i.e. more transition planning is required to prepare the child for change of 29

31 driver/routine and more driver awareness (C) 40% of respondents said that the person they care for had a designated social worker (CQ) Adjusting the environment Issues for consideration Environment adjustments to be taken into consideration at college/university for example a quiet area (IQ) Improve training in GP surgeries, including reception staff, in order to address and make adjustments for people with autism (CQ) Service responsibility The One stop shop is hoping to bring consistency and care to those who do not fit into services (SAQ, SPQ, M) Education Specialist support with college and employment needed (SPQ) Improve knowledge of Asperger s Syndrome in education (IQ) Improve social support during unstructured break times in mainstream schools (CQ, C) Improve education options within LA area that meets the needs of spectrum i.e. improve teaching base/unit environment (C) more support in schools, recognition of people s needs in class (IQ, C) Employment Respondents reported that schooling in local areas needs to improve in order to meet the needs of everyone with autism. One parent reported their difficulty in finding suitable schooling provision. "offered 3 schools in the UK nearest being 100 miles away" (CQ) Improve knowledge and awareness amongst employment services, employers and amongst employees in the workplace (CQ, IQ) 30

32 Improve employment/training opportunities (CQ) and support and opportunities to maintain and progress beyond voluntary work and progress within employment (C, IQ) Ensure that the workplace environment is suitable and that transitions to employment are considered (IQ) One respondent said that the "Government creating autism friendly jobs" would help (IQ) Housing Support to ensure that the environment in the home is taken into consideration and suitable (CQ) and more awareness in housing services and in the private sector (IQ, CQ) Support to progress toward independence and support in developing daily living skills (IQ, CQ) Respite Regular respite provision locally required (CQ, C) Services Respondents felt that an ASD coordinator would be beneficial (M, SAQ) It was felt that there is not enough suitable provision and opportunities post 18 (CQ SPQ, C) Improve service provision locally that meets needs of spectrum (C) Respondents reported that support services for families need to be accessible for those living in rural areas e.g. an outreach service (C, C) Increased specialist education provision required e.g. nursery through to secondary/tertiary education (CQ) 31

33 7. A framework and process for seeking stakeholder feedback to inform service improvement and encourage engagement. 10. A self-evaluation framework to ensure best practice implementation and monitoring. Advocacy What s working well? It was highlighted that advocacy services are sought where appropriate (SAQ) What s not working well? A few respondents said that when the child reaches 16 there is a lack of support/communication between college and parents "most of the good work done by the school was lost" (CQ, C) Advocacy service for adults required (M) Issues for consideration 9. Clear multi agency procedures and plans which are in place to support individuals through major transitions at each important life-stage. Transitions all major life transitions What s working well? It was said that there is a transitions team in place in the Local Authority to aid transition from school to adult services (SAQ, M) What s not working well? 9% of respondents from the service provider questionnaire said that there was a multi-agency approach to transition planning in the area, 45% of respondents said that there was not a multiagency 32

34 Some respondents reported positive experiences with transitions in a mainstream school with specialist autism support well informed, information in accessible format, transition process excellent" (CQ) It was said that Perth autism support have a transition process guide which some carer respondents reported to be useful (CQ) approach to transition planning and 46% of respondents did not know (SPQ) It was highlighted that the Transitions team do not work with lifelong transitions post school (SAQ, CQ, M) and that there is a gap in services, support and opportunities post college (M, CQ) It was also felt by a number of respondents that there is a lack of autism specific knowledge and preparation for people leaving school and moving onto adult services (CQ) One respondent highlighted difficulties in transitioning from school to college "too big a transition from assisted in class room to college with no assistance" (IQ) Some respondents noted there is a lack of daily transition planning in schools i.e. change of teachers, changing classrooms, at start and end of school day (C) Issues for consideration Improve on-going transition support from school to adult services, post college to community (CQ, C, M) with more autism specific transition information/advice and involvement of the carer and individual in planning (CQ, C) Improve post college options (CQ) ensuring support and guidance on options when leaving school (IQ) Improve link between child and adult services (SPQ) 33

35 10 Scenarios During the course of the project the Mapping Coordinators employed a number of case studies to help agencies determine how they worked together with individuals. Of all the case studies offered four were used more often than others. Below you will find an illustration of one of those case studies with the information extrapolated from across Scotland to give a picture of what is likely to happen. This will be useful in measuring what s happening locally against the information drawn nationally. To access the results of the case studies double click on the image below and then click on each named case study to review the results. If you are unable to access the PDF through the image please double click on the icon below. NAS Scenariosfinal.pdf 34