Our Local Offer for Children and Young People with Autism

Our Local Offer for Children and Young People with Autism

Executive Summary © City of York Council 2013. Cover designed by HBA, York. Printed by CYC Design & Print Solutions. 16224 Our Local Offer for Children and Young People with Autism York’s strategy for children and young people with autism WorkingtogetherwithChildren,YoungPeopleandFamilies If you would like this information in an accessible format (for example in large print, on CD or by email) or another language please telephone: 01904 554322 or email: jessica.haslam@york.gov.uk 16224 COY Autism Full Strategy 2013 Cover_Layout 1 08/08/2013 10:33 Page CV1

Our Local Offer for Children and Young People with Autism

16224 COY Autism Full Strategy 2013 Cover_Layout 1 08/08/2013 10:33 Page 1

1 Contents Page 1. Scope of the strategy 3 2. Introduction 4 3. Vision 7 4. Principles 8 5. The local authority and partners know how many children and young people with autism live in the area 9 6. Children, young people and their families are central to the planning of their lives 10 7. How we involve parents and carers in the review and planning of services 12 8. Assessment is accessible 14 9. When children and young people do not meet the criteria for diagnosis or there is a delay 15 10. Children in early years have coordinated support 17 11. Children, young people and families are supported 19 12.

Children and young people‟s learning is valued and supported 26 13. Children and young people can access community activities 34 14. Children and young people live healthy lives 36 15. Young people are supported to plan for a smooth transition into adulthood 39 16. All staff have access to appropriate training 44

2 17. Appendices 1. Policy and guidance 46 2. Key priorities from NICE recommendations and the City of York‟s response 49 3. York „pathways‟ or steps in assessment and support for children and young people on the autism spectrum 51 4. Autism: recognition, referral and diagnosis of children and young people on the autism spectrum – NICE clinical guidelines, CG128: Sept 2011 57 5. Local pathway for recognition, referral and diagnostic assessment of possible autism 73 6. References 76 7. Acknowledgement 77

3 A strategy for children with autism in York Scope of the strategy This strategy concerns children and young people with special educational needs relating to autism from 0 - 25 years of age.

We have written this with reference to the strategy for adults with autism in the city. We aim to ensure continuity and coherence between all services, making a young person‟s transition into adulthood as smooth and as well supported as possible. The children and young people’s autism strategy group The autism strategy was commissioned and written by the children and young people‟s autism strategy group. There is a strong commitment from this group to work across all agencies to improve services and support for children and young people with autism. The group is well established and has good parent representation and multi-agency involvement.

Please see the acknowledgement section on page 78 for a list of group members. The autism strategy group reports to the strategic partnership for integrated services for disabled children, which in turn reports to the YorOK Board and the Health and Wellbeing Board. Definitions Autism is a term used to describe a neurological difference in brain development that has a marked effect on how a person develops. It is a lifelong condition. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways and to different degrees.

Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. Throughout this strategy the term „autism‟ has been used to signify children and young people with a diagnosis of autism, which includes autism, Asperger‟s Syndrome and atypical autism. It is recognised that a variety of terms have been used in the past for this group, including autism spectrum condition (ASC) and autism spectrum disorder (ASD).

4 Introduction Significant consultation has supported the writing of this strategy. This has led to a better understanding of what works and what needs to be further developed. Parents, carers, children and young people have told us what it is like to have autism in York and how effective support has been at different stages of their lives. The learning from the consultation has been included throughout the document. It is important that it drives change forward in all areas, and that consultation is not seen as a separate activity, tagged on to service development.

The first task in writing the strategy has been to assess what is available now for children and young people with autism across the city.

This helps to inform professional and parent/carers about the wealth of support, provision and guidance available in York. Feedback from parents, carers and professionals has identified when there are gaps or areas to develop in support for children with autism. In York we are fully committed to improving services, aiming to address the holistic needs of the child and young person. No one agency can provide the complete support. „Team York‟ is a term that describes the need for partners to work together to meet the needs of children and young people in the city. This is particularly true for those young people who have complex needs and benefit from support from several agencies.

This document details what is available now, what is planned for the next three years and the difference it will make for children, young people and families. Parents in consultation have told us that: “York give 110% and will do their best for you in comparison to other Local Authorities.”

5 Statistics The National Autistic Society (NAS) has reported a 61% increase in autism cases between 2005 and 2010. Studies have also indicated that prevalence is now thought to occur in 1% of children. Autism is also recorded as more prevalent in boys (4:1 ratio). However, recent research, Happe (2011), suggests that this may be due to females coping better with or disguising autistic traits with a consequent underdiagnosis of girls. Approximately 70% of people diagnosed with autism may also have other difficulties impacting on their day to day lives and wellbeing. (Table 5 in the Nice Guidance contains more details.) Autism symptoms and behaviours Social problems Difficulties can arise from a poor understanding of:
  • social rules
  • use of gesture and body language
  • eye contact, and
  • social smiling. Difficulties with turn taking, sharing of pleasure with others and understanding emotions of others are often experienced. Making and maintaining friendships may be problematic for many.

It is well known that people with autism often have a delay in their appreciation of the point of view of others, described as a lack of theory of mind. Communication and language problems This may include difficulties with conversational give and take, echoing words and phrases, and having unusual tone, pitch, accent or way of speaking. Children and young people with autism may use complex vocabulary but not always understand what is said to them. They may understand and use language literally, having difficulty understanding jokes, metaphors and sarcasm. Understanding non-verbal communication, including gestures and facial expressions, can be difficult.

Some children and young people may be pre-verbal or have limited speech and use alternative/augmentative forms of communication such as PECS (Picture Exchange Communication System), signs.

Imagination delay The play of children and young people may be repetitive and they may not be able to play imaginatively with toys or other children. Poor imagination skills may also result in:  difficulties with problem solving and time perception, literal thinking and little understanding of the abstract  a tendency to focus on details and not to see the whole picture  imagining different outcomes or predicting what might happen next may be restricted

6  a limited understanding of the concept of danger e.g. that busy roads may pose a threat  stress in new or unfamiliar settings.

Sensory, repetitive or unusual behaviours These may include unusual and intense preoccupations, sensory interests and/or fears, and mannerisms or odd movements. Many people with autism process sensory information differently and may be over or under sensitive to sounds, smells, tastes, touch, and visual experiences such as bright lights or certain colours. Just like everyone, children and young people with autism have their own personalities, interests and skills, and are all individuals.

From „Oliver tells it straight‟: We, with Asperger‟s Syndrome, tend to... *Have deeply focused interests, allowing us to work exceedingly well on a narrow area of topics. For example, I am very interested in role-playing within the online game World of Warcraft. Did you know that the Arathi Honour Guard wear grey tabards when the actual colour of the city state of Stromgarde is red? Of course you didn‟t know, but if you asked me anything on the topic I would probably have an answer *Decipher the world in a way no one else seemingly bothers to. For example, I would describe opening a canned drink as having similarities to breaking the shell of a crustacean open so that one can feast upon its gory insides, which I doubt is what any other individual would think of immediately.

We are capable of very abstract thinking which has proved to be a beneficial perk of the syndrome if you ask me.

Struggle in communication. How we suffer in this field varies from person to person. I find that despite me being capable of discerning emotion I am not understanding of the proper way to react to such emotion, leaving me below the lower hand. Another factor that I find absolutely agonising is my inability to understand when the appropriate time to speak in a conversation is. *Find it strenuous to both make and acknowledge friends. I know a few people in my school who like me but I am never, ever, ever sure of what they actually think of me and/or whether or not I can consider them friends.‟

7 Vision “York is a city making history and its children are our future.

Every child and young person in York deserves to live their dreams. We will stretch, support, nurture and release them to do so. Working with them and their families, we will make York the best place in Britain in which to grow up.” Our Vision: from „Dream Again‟, York‟s Children and Young People‟s Plan, 2013 - 2016 Our vision for disabled young people, including young people with autism, is no different to the vision for all young people in the City of York. Specifically we aim to support young people with autism to fulfil their aspirations through employment, training and volunteering, living as independently as possible, and being active members of their community.

In York, for disabled children and young people, including those with autism, we promise to:  listen carefully to you and create improved choice by engaging you in the design of great services  offer you access to personal budgets and direct payments  introduce single plans to coordinate the best support for you to meet your education, health and care needs  provide clear information to support your choice  continue to work with your parent/carers in partnership with voluntary agencies, including CANDI, York‟s parent/carers‟ forum  make sure all staff have access to disability equality training written and delivered by you, together with professionals.

This will help staff to respond effectively to your needs  support you to access leisure and positive activities in York so you can contribute to your community  provide personalised short breaks for you, if you have complex needs  provide you with a named member of staff to help coordinate the support you need  support you as you move into adult life by providing access to employment, volunteering and education or training.

City of York Charter for Disabled Children 2013 - 2016

8 Principles The principles that underpin this document are child and family centred, based on the social model of disability. All children and young people have the right to access learning, leisure activities, health services and to be happy. It is everyone‟s responsibility to do all that they can to reduce any barriers to increase their opportunities. The principles are:  Planning for children and young people with autism must be based on „coproduction‟, with the views and aspirations of children and young people central to the way in which services work with them.

When children, young people and parent/carers are engaged in planning services, this process will be more tightly focused around meeting needs and helping to create more effective services.  All children and young people have the right to access learning, leisure, health and improve their wellbeing.  Some children and young people face barriers in accessing these opportunities. It is society‟s responsibility to do all that it can to reduce these barriers to increase their opportunities. In this context the work across partners in education, health, social care and the voluntary sector with children and young people with autism is to make it possible for them to have active, fulfilling lives.

It is important to support young people to have high aspirations and to put stepping stones in place to help them realise their dreams.

Outcomes for children and young people with autism differ from the outcomes of their peers. Services are actively working to reduce these gaps. We know that coordinating support and working closely together will help to ensure all children and young people with autism and their families achieve their potential and are full and active members of their community. „The multi-agency team in school review supported the parents‟ and the child‟s needs. They help bring out parents‟ voices and build confidence‟ Parent consultation evening with National Autistic Society

9 The local authority and partners know how many children and young people with autism live in the area Where we are now N.B.

Figures for 2013 are being collected but are not complete at the time of this publication. They will be updated on the website once they are available. Dec 2012 Number of pupils in York with an autism diagnosis on the specialist teaching team database 198 Number of ex-pupils (up to age 20 years) 53 Referrals for autism from 1st April 2011 to 1st April 2012 The number of referrals for autism to specialist service 53 The number diagnosed with autism 25 Average length of time from referral to first appointment 7 weeks Average length of time from referral to diagnosis 24 weeks Mean age 8 Number of boys 40 Number of girls 13 Average number of hours per autism assessment completed 17 Forum data 2005 2006 2007 2008 2009 2010 2011 2012 Discussed at Forum 41 35 59 39 59 62 80 102 On average there is a 50% diagnosis rate, although this is now increasing due to more effective screening before cases are brought to the forum.

The detailed audit is still ongoing and we hope to get the full data set completed by the end of 2013.

10 Children, young people and their families are central to the planning of their lives Where we are now In the last two years there has been a strong focus on increasing the opportunities for young people to take decisions and become more active in reviews and planning for their future. The „Listen to Me‟ project worked with secondary school special educational needs coordinators (SENCos) to establish creative, person-centred approaches to support disabled young people to take an active role in the annual review of their Statement of Special Educational Needs.

This includes using, for example, Comic Life and photographic „one page plans‟. Young people responded strongly to opportunity to participate more fully in their reviews and take an active part in decision making. As a result of this work we began to record how many reviews were conducted using person centred approaches, and these increased from 43% to 76% (October 2012). This approach is now established in secondary schools, and has been extended to primary schools. The Transition Team, working with disabled young people, 14 - 25 years, championed this approach and cascaded the training to social care and specialist providers across the city.

The independent reviewing officers routinely highlight reviews where creative approaches are used to ensure the meeting is focused on the young person and their wishes. Young people report that they feel more in control of decisions and that they are „at the centre of attention.‟ Young people are asked about their friendships and social opportunities, and plans are made to support and extend these.

The best thing about my review is that I talk to people instead of them talking to me. What I mean is I say what I feel about me and not other people saying about me” Young person Working with CANDI, York‟s parents‟ forum, we have supported parent/carers to take a more active part in decisions for their child. CANDI has run workshops on person centred approaches, and how to plan reviews and work with schools to ensure a family focus to the meeting. Offering parent/carers direct payments and individual budgets for those children eligible to social care support enables them to make decisions about the support that will best suit their child.

Employing personal assistants allows families to be creative about the support their child receives and focus entirely on what their child likes to do and the skills they wish to develop, including independence skills. What we will do in the next three years We will continue to champion person centred approaches in reviews and decision making opportunities for your children and young people. This will include increasing the number of person centred reviews to 90%. We will introduce a more coordinated assessment and the single Education, Health and Care Plan, which will focus on the needs of your child and young person.

The multi-agency assessment will consider the holistic needs of children and young people and the plan will be drawn up using person

11 centred approaches. This will enable your children and young people to take an active role in decision making, how they want services to be involved, with a focus on planning for their future. You will be offered individual budgets if you are eligible for the single Education Health and Care Plan. It is anticipated that the number of families taking up direct payments and personal budgets will rise. There will be increased options for individual budgets, combining budgets from health, social care and education. Other families may choose to have their budgets managed by the service/s funding them - education, social care and/or health.

There will be increased transparency about how funding decisions for support are made. Training and support will be provided to you as families in the light of changes to legislation.

Short breaks will be planned to promote friendships, and short break workers will enable young people to meet and enjoy community activities together. A second youth club for disabled young people will be established in York, which will provide a quiet, supportive environment that is more autism friendly than other busy youth club settings. The difference for you Children and young people will feel more effectively included in; decisions in reviews of, and planning for, their learning; their increased independence; their leisure and their health. They will be supported to understand how services will work together to meet their needs, and feel more secure in understanding where to go for support.

Children and young people will be more empowered to make decisions, which will enable them to take an active role in planning for their future as adults. More of you will have the opportunity to manage your own budgets and feel more in control of your son or daughter‟s future. Increased opportunities will be developed within the community for children and young people, in response to individual budgets and creative solutions being developed for families.

Assessment and planning will be coordinated so you will not have to tell your story many times over to each individual agency. This will reduce frustration and families will feel more listened to. Young people will feel less isolated and be able to meet friends outside school. Through accessing an autism friendly youth club they will extend friendships, social skills and gain in confidence in group situations.

12 How we involve parents and carers in the review and planning of services Where we are now Listening to parent/carers and children and young people is central to improving services for disabled children and young people.

We have parent/carers represented on all the multi-agency steering groups, including the autism strategy group, where they are active members participating in planning services for the future. Parents, young people and professionals co-deliver disability equality training and are part of interview panels for staff working with disabled children. In order to evaluate services, practitioners informally ask parent/carers for feedback on their support and any concerns for their child or young person. Many local authority services, partners, schools and early years‟ settings also use surveys to ask a large number of families about how effective the service is, enabling the service to identify improvements.

These surveys often include age appropriate questionnaires for children and young people themselves, and separate ones for their parent/carers. Often these questions are conducted during, as well as at the end of, the agreed support, to ensure the needs of the children and young people are being met.

A specific stand alone consultation was conducted to enable the writing of this strategy and inform future planning. The consultation responses on the strategy, conducted at the Integrating Services for Disabled Children conference, stressed the key importance of services being both child and family centred. (Planning should be „ more young people centred Child/adult/family centred approach to services and support are important.‟ What we will do in the next three years Engaging with families will continue to be central to planning our services. We will seek further feedback from you about how effective any changes have been.

We will increase training for you about how to actively be part of planning using person centred approaches. This will support you to have a more active role in planning services for your children.

We will continue to encourage all services in health, education, social care and the voluntary sector to monitor and assess the effectiveness of their input, in order to improve all services available to children and young people with autism. Feedback on the results of consultation and what has been done as a consequence to improve services will be increased.

13 The difference for you Children and young people with autism and their families will enjoy increased satisfaction with the support services, schools, early years‟ settings and transition support.

The focus will be on meeting individual needs, raising aspirations for all, providing feedback and engaging closely with you.

14 Assessment is accessible Where we are now In York there is a comprehensive service for children and young people with autism. If parents are concerned that their child may have difficulties with social interaction, social communication and/or displaying intense interests or unusual behaviours, they can choose to discuss this with a range of professionals. This could include their GP, health visitor, speech therapist, teachers or other professionals. If concerns continue, they will refer the family for a more specialist assessment. If the child is under 5, this will probably be to paediatricians at York Hospital or, for older children, through primary mental health workers (PMHW‟s) and the Lime Trees (CAMHS) service.

The waiting time in 2013 is usually around 15 weeks.

An assessment will be completed, which can be up to six appointments and usually includes; a brief history of the child‟s development, family history, detailed interview about the child‟s behaviour, observations and play assessments of the child at school, and/or home, and/or in clinic. Other assessments may be included when required. Health professionals write a report based on their findings and, with parent/carers permission, discuss this at the multi-agency autism forum. The forum is held monthly. It comprises paediatricians, psychiatrists, clinical and educational psychologists, mental health nurses, speech and language therapists and a specialist teacher for autism who knows the child/young person.

Parents are not invited to the forum due to time constraints and the numbers of children discussed at each forum. However, they are informed in advance of the forum and immediately following the forum about the details of the discussions and the outcome. This process ensures that any diagnoses made are checked and verified through this multi-agency team. For every child there is a systematic review of autism symptoms. The process of diagnosis is extended and some families, in consultation, told us they found this time difficult and did not feel they got enough support.

When a diagnosis is made, the family is referred to appropriate interventions (e.g. social skills groups, specialist teachers for autism, social care and courses including ASCEND, which is an 11 week course for parents and carers). Where there is uncertainty about a possible diagnosis, a plan will be made to offer intervention and support to the family. Over a period of time, to take into account changes in the child‟s development, a review will take place. During consultation parents have told us: “Post diagnosis has been a straight forward process and I have felt listened to. A very positive experience.” “It (getting a diagnosis) became a roller coaster of believing our son definitely had Asperger‟s Syndrome to he didn't, which added to the stress of the whole process.

I went from not wanting to label our son to desperately wanting a diagnosis to stop the uncertainty and guessing. Finally getting the diagnosis gave an immediate sense of relief that I wasn't a bad parent and that there was a name that could help define his behaviour. We also started to get help that was relevant to our son and to us as a family.”

15 When children and young people do not meet the criteria for diagnosis or there is a delay: A few families have told us we need to: “Improve support for families whose children do not meet the criteria or who are awaiting a diagnosis”. We are aware that awaiting diagnosis is a very difficult time for families and we try to keep the waiting time to a minimum. At the time of writing, 2013, this is around 15 weeks from referral to getting an appointment, due to the large increase in demand for assessments. There is also a further delay in waiting for a formal diagnosis at the autism forum. We are meeting with commissioners to highlight these growing demands.

When a child or young person does not meet the criteria for a diagnosis of autism, parents and carers often experience a number of conflicting emotions. These include; disappointment, relief, frustration, anger and/or a sense of loss as to where to turn to for help. The assessment and diagnosis process is lengthy and complex. No two children with autism are the same and there is no simple diagnostic test. Some times children have some symptoms but these may be insufficient for a diagnosis. Some times the symptoms are similar to other disorders (e.g. developmental disorders, hearing difficulties, very severe attachment problems, speech and language delay, learning difficulties and anxiety).

The professional working with you will try to determine whether or not any of these types of problems help to explain some of the child‟s difficulties or if they are related to possible autism. It is usually possible to do this but, occasionally, the therapist may be unsure (particularly if the child is very young or if they behave very differently at home and at school). When the professionals and the autism forum are unsure, they will continue to monitor the child through appointments and offer support. They will then complete a further assessment in approximately a year if there is no change or more symptoms become apparent.

This allows the time to evaluate changes in the child‟s development. Some times some of the symptoms disappear and other times they may become more severe. Meanwhile, other assessments and/or interventions may be offered to you.

Families are entitled to a second opinion (with a different clinician if they prefer) if they are not happy with the outcome of their assessment. What we will do in the next 3 years Over the next few years we will evaluate the existing procedures and processes, including the established steps towards diagnosis and support interventions, seeking the views of parents, carers, young people and professionals. Changes will be made on the basis of their experiences and recommendations in order to improve services. Further information about the assessment process will be developed with families. Training will be given to partner agencies about the diagnosis

16 of autism and how they can use a questionnaire to help families ascertain whether their child has possible symptoms of autism. There is now a new classification system for autism agreed in May 2013: International Classification for Diagnoses 11 (ICD-11), which will hopefully inform and improve our diagnostic system. We hope to introduce some support through the specialist teaching team for parents going through diagnosis, in response to consultation identifying this as a particularly difficult time. There are also plans to improve the assessment process through the single Education, Health and Care Plan.

The difference for you Parents, carers and young people will have the opportunity to continue to help us to shape and develop these services in the future. Families and professionals will understand the process of assessment, and feel supported and fully informed in the process. Increased integration of services should reduce the need for you to repeat information to different agencies, hopefully making assessment processes more satisfactory and streamlined.

17 Children in early years have coordinated support The specialist early years support team, (SEYST) comprises four professional groups: early support, Portage, specialist early years teachers (SEN) and an early years educational psychologist (EP).

The SEYST team works with children 0 - 5 years or until they enter a mainstream or special school setting. “We can contact an EP if we need to”. Parent Where we are now In the early years there are very few children who have a diagnosis of autism. Children will often show possible symptoms of autism, but it can be very difficult to make a diagnosis when children are very young. Some children may receive a diagnosis around the age of three but for others it may be given later when signs are clearer at nursery or in school.

Children who show potential signs of having autism often have support from a number of different services. If parent/carers have any concerns about their child's development they can talk to their health visitor or G.P. who may refer them to a specialist service for the under fives depending on their concerns. This may include, for example, a speech and language therapist, paediatrician, occupational therapist, physiotherapist or the specialist early years support team. The SEYST team are often involved in working with children and families prior to a diagnosis of autism and they liaise closely with the autism forum.

All members of the team have attended training in autism and are able to deliver recognised autism approaches. Children and young people with a wide range of special educational needs (SEN), including social communication difficulties, who are referred to the team are able to access some/all of the following:  Weekly Portage home visits - learning goals and activities are set with parent/carers, which parents usually build into their daily routines. Progress is reviewed on a six monthly basis with parents with the early years educational psychologist and new goals set in consultation with therapists and any other professionals working with the child  A weekly social communication group at the child development centre (CDC) York Hospital with a SEYST teacher and a specialist speech and language therapist  Support from the specialist educational psychologist for early years who manages the specialist early years support team and is involved in reviews and assessments  Coordination and support from the early support key worker coordinator (ESKWC).

She „signposts‟ families to available services and helps families to choose a key worker if many services are involved with them  Monthly Time for You groups at the children‟s centres. The Portage home visitor or the specialist early years teacher (SEN) will provide advice to early years settings that children with SEN attend. This is provided prior to a child‟s diagnosis of autism. Following a diagnosis the advice would then be given by the specialist teacher for autism.

18 Families are central to all the services we provide. Following a diagnosis of autism all the above teams work in close liaison with the specialist teacher for autism and with the speech and language therapists. Training is provided for all SENCos working in early years settings in York through the five day accredited training course and through the termly SENCo training network sessions led by the specialist early years team alongside the early learning leaders. What we will do in the next three years We are always striving to improve the quality of the services we provide as a result of the feedback (verbal and written) we receive from parents and professionals.

Our aim is to continue to provide the services we presently deliver, as listed above, in a time of change and economic constraint. We will support the implementation of the revised early years foundation stage (EYFS), which focuses on how children learn best. We will continue to provide training and advice to early years practitioners to improve the quality of service delivery to children with SEN. The Early Support key working approaches will be used as a model of good practice and extended beyond pre-school years.

The difference for you Parents and early years settings will feel supported and will receive appropriate advice and training from the specialist early years support team through coordinated working with other services. Your children will be better supported by trained staff, so that you can be confident of your child‟s safety and wellbeing at nursery. The continued focus on families, supported by key workers, will enable you to take an active part in decision making for your children. Children will grow and develop in environments that meet their needs.

19 Children, young people and families are supported “We, with Asperger‟s Syndrome, tend to: Be discriminated against, both passively and directly.

I can honestly say that people with Asperger‟s Syndrome or perhaps any autism spectrum condition are seemingly looked down upon rather than being placed on the same equal footing of you „unafflicted‟ people. I have been referred to as being „retarded‟ and „spastic‟; you really shouldn‟t pretend this stigma doesn‟t exist as it is really, really, real. I can also positively guarantee that it exists somewhere within your school. I plead to you, find it and destroy it.” Young person Where we are now Accessing Information Families tell us they would like increased information so that they know what is happening in York and can make informed choices.

Information is shared with families and children and young people in a variety of forms; web-based, booklets, newsletters e-versions, hard copies and information given by practitioners. Information available for families includes:  York Local Offer booklets including, Making Life Easier for You, Starting Primary School, Starting Secondary School and Moving on from School  Newsletters and autism related information from the Family Information Service  Monthly sports newsletters  Short breaks information  Weekly news bulletins via email from Integrated Services for Disabled Children  Details of, and invitation to, the Opportunities Fair for disabled young people and families in transition - moving on from school  School newsletters and events  Service leaflets and autism related information  Information on short breaks and services from the Health & Disability Team, referral coordinator  Information about the CANDI forum for parent/carers  Information about the National Autism Society and the local branch  Regular e-mails on autism related events from specialist teachers.

The way children‟s services is conducted in York is really good compared to other places and it works very well.” Parent Short breaks Short breaks are provided for many children and young people with autism. A short break is any service that allows a disabled child or young person to have an enjoyable break away from their parent/carer and also gives their parent/carer a break from their caring responsibilities.

Short breaks can be for a few hours or longer, including overnight, and can be provided in lots of different ways. An example might be for a child to attend a mainstream activity with additional support through a short break worker, student link

20 or use of direct payment. Alternatively the child may attend a specialist activity such as SNAPPY or Choose2, which are youth clubs for children with disabilities. We will set up a second club specifically to meet the needs of young people who prefer a quieter environment: Choose2-2. Families tell us that they highly value short breaks and enjoy a wide range of activities.

Families will have an assessment to see if they meet the criteria for short breaks. For more information, families can contact the referral coordinator. T: 01904 555693 W: www.yor-ok.org.uk/Parent/Disability/AdditionalNeeds/shortbreaks Training and Education for Short Break Services Training and advice is given to short break providers on a wide range of issues. Training on social and medical needs is given by Training and Education for Short Break Services, TESS. For example, TESS can train Brownie leaders or work placement staff about autism.

E: allied.healthcare@nhs.net Housing and Adaptations There are two occupational therapists (OTs) working for the City of York Council who assess the needs of children and young people in their own homes. They look at areas of difficulty, including access in and around the home. OTs work with children and families to find solutions, sometimes by doing things differently, to make life easier. They can make recommendations for provision of adaptations or equipment, and support with re-housing to more suitable accommodation. Referrals are made to the OTs through the Customer Access and Assessment Team.

They are open 8.30am to 5.00pm Monday to Friday.

T: 01904 555111 E: adult.socialsupport@york.gov.uk. Minicom: 01904 554136 Courses for families ASCEND (Autism Spectrum Condition Enhancing Nurture and Development) is a programme run for parents of children who have a diagnosis of autism, Asperger‟s Syndrome or atypical autism. The course runs for two hours a week and there are eleven sessions in total. There are three courses held across the city. One is held at Hob Moor Oaks for those with children with a diagnosis of autism, and this usually starts in February or March. The other two are for those parents with children with a diagnosis of Asperger‟s Syndrome.

These are held at Lime Trees starting in February/March and September each year. These courses are run in a very relaxed way and parents can contribute as much or as little as they like to the discussions. The course covers some of the theories about autism and Asperger‟s Syndrome and provides support to manage behaviour and practical issues. Parents, grandparents, close family members and teachers have found this course very useful and have gained support from each other.

21 Parents and carers can be referred to ASCEND if their child or young person is under 18 and has a diagnosis of autism, Asperger‟s Syndrome or atypical autism. They can be referred through health, education or social care professionals. There is a book and a manual to accompany this course. (Williams and Wright, 2004; Wright and Williams 2011) T: Lime Trees: 01904 726610 Siblings groups These have been offered for siblings of children with learning disabilities and/or autism spectrum disorders. Children are referred to the group by child, adolescent and mental health service (CAMHS) clinicians, education providers and voluntary and social care providers.

The group provides support and strategies to help children and young people, as well as a chance to meet others who experience similar issues. The groups are designed around various activities, which the young people enjoy, and the final session usually involves a meal out. The groups are usually run once every two years. T: Lime Trees: 01904 726610 One sister: “It was nice to meet other siblings - you get to discuss embarrassing things. It‟s nice to talk to people who experienced the same issues.” Parents in consultation tell us.

I am not on my own - Lime Trees gave great support.” Groups for young people to support and develop social communication skills Castlegate group is for teenagers, 15 to 18 years of age. It meets monthly at Castlegate and provides support and activities for young people who struggle to make friends and understand social situations. T: Lime Trees: 01904 726610 Animation groups are held periodically at Lime Trees. Young people work alongside artists, musicians and clinicians to produce animation films about an area of interest or to highlight their own experiences of various conditions. See the award winning film about Asperger‟s Syndrome through the link below.

Two of the young people who helped to make this film went on to study animation at university. W: www.biomation.org.uk Asperger‟s Syndrome Award Winning Film: http://www.youtube.com/watch?v=x9H5B_aPyVk A 14 year old boy, after attending one of our animation groups, said: 'this has changed my life!' Summer groups for younger teenagers aged 12 to 15 years old provide activities that facilitate ways to develop confidence with social communication skills. Group facilitators meet with parents after the summer group to discuss their child‟s progress.

22 They plan ways to build on skills acquired throughout the summer and encourage new friendships to continue. T: Lime Trees: 01904 726610 Tackling bullying The training and support that schools and staff working with children and young people with autism receive includes issues around bullying and how to support young people. Resources include a DVD, the Inclusion Development Programme on autism and materials developed by young people in York. Disabled young people were supported to develop some anti-bullying materials over a number of workshops. These have been shared with schools, youth centres and early years settings, and have enabled staff to increase pupils‟ understanding of the issues disabled young people face.

Emotional literacy support assistants (ELSAs) are specialist trained teaching assistants working in over 40 schools across the city who provide additional interventions for children and young people with social and emotional needs. Their support includes interventions such as circle of friends, therapeutic stories, understanding anger, social stories, solution focused approaches and circle time. In York, we now have over 100 ELSAs trained since April 2010. Families and children and young people have given very strong feedback about how supportive ELSAs, and their intervention, have been. In 2012, all secondary schools and 31 primary schools used the Stand Up for Us survey.

The survey asked children and young people if they had been bullied or had bullied anyone, and for details around this. The questionnaire was anonymous in order to encourage full participation. It has enabled schools to understand where and why bullying has been taking place and to put in place measures to stop it. Parent Partnership Service (PPO) The parent partnership service in York provides impartial support, advice and information for parent/carers of children with special educational needs and/or disabled children. It supports and advises parent/carers whose children are receiving support on school action/action plus, are undergoing statutory assessment or who have a statement of SEN.

They aim to promote and enable the active involvement of parent/carers in all decisions about their child‟s education. Parent partnership services are universal, offering telephone advice, home visits, support at meetings in school or with the local authority, as well as attendance at annual review or school visits. The parent partnership service offers, with parental agreement, a multi-agency approach, working with other professionals who work with your child. The service also gives training, advice and support to agencies. The service is entirely confidential and highly valued by parents.

T: 01904 554562/554312 E: gill.milner@york.gov.uk E: gillian.bucklow@york.gov.uk

23 “The parent partnership service has been a great help, really kind and helpful, giving us advice even before we moved here.” Parents in consultation York Carers’ Centre The carers‟ centre offers free support to unpaid carers of any age, caring for someone who lives in York. Staff from the centre can give advice and information over the telephone or visit the carer at home. They regularly answer questions about benefits, carers‟ rights, self-directed support, local support groups and services and grants. The centre offers:
  • a carers‟ emergency card
  • regular newsletters
  • social activities
  • employment support
  • education and training
  • help filling in forms
  • a discount card. There is additional personal support for young carers (8 – 18 years of age) and young adult carers (18 – 25 years of age).

T: 01904 715490 E: enquiries@yorkcarerscentre.co.uk W: www.yorkcarerscentre.co.uk/ “Young carers - we love them - they give superb support to SIBS.” „Feeling that you can ring someone means you don‟t feel on your own.‟ Family Intervention Rapid Support Team (FIRST) FIRST is a psychology led specialist service for disabled children and their families. The service supports children and young people with a learning disability or autism, and their families if they are experiencing difficulties which could jeopardise the family situation and/or local service provision.

York has a range of skilled services in the local area which allows for early intervention and support.

As a result, very few children, young people and their families reach a situation where FIRST need to be involved. However, for those with the most complex needs, FIRST can provide intensive assessment and intervention around the difficulties that are „challenging‟ the family and/or local services. FIRST also helps to bring together local professionals and providers, maximising expertise and providing „wrap-around support‟ to allow holistic, on going and consistent support. This allows bespoke and creative interventions to be implemented into the family home and/or child‟s environments.

The nature and level of involvement that FIRST can provide reduces the likelihood of a child requiring an assessment or residential placement away from their family, home and friends. T: Lime Trees: 01904 726610

24 “We feel the support has been a lifesaver for us at a very difficult time for us as a family. It‟s a fabulous service.” Parent “I find the joint working aspect of the service very helpful as it has allowed a more intensive approach to be taken with the child and in turn this service has enabled a more multi-agency approach to be taken with this child‟ ...„enables specific issues to be addressed faster.

The service is also able to take a more holistic approach on given situations” Social Worker Other groups In addition to the City of York Council and CAMHS services, there are also organisations and groups who offer support to children, young people and their families in York. These are outlined below, along with information about how to get in touch/access the service.

CANDI CANDI (Children and Inclusion) is a friendly, supportive group of parents and carers of disabled children and young people and those who have additional needs, aged from birth to around 25 years. CANDI works with other agencies to highlight the needs of disabled children, young people and their families. This is to develop the skills, knowledge and confidence of families and professionals to make life better for disabled children and young people. Professionals have said that the disability equality training written by CANDI has really helped them to understand the impact having a disabled child can have on family life.

CANDI has also run workshops and conferences for parents and carers. CANDI meets at least once every half term as a forum in the evening, and once a month during the day for a friendly chat.

T: 07751 828369 E: admin@yorcandi.org.uk W: www.yorcandi.org.uk CANDI campaign video: W: www.yorcandicampaign.wordpress.com “ Ways of getting together with other families is so important; you don‟t have to explain your child‟s behaviour because people just understand what it can be like.” National Autistic Society (NAS) York NAS provides a local hub where parents, carers and children, young people and adults with autism can get help, access services, support each other and meet others in similar situations. All local branches are run by volunteers so please be aware that it may not be possible for your call to be answered straight away.

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