PRINCIPLES OF GOOD TRANSITIONS 2 Scottish Transitions Forum 2014 PRINCIPLES OF GOOD TRANSITIONS 2 Scottish Transitions Forum 2014 i Scottish Transitions Forum. 2014 Compiled on behalf of Scottish Transitions Forum Members by ARC Scotland scott.read@arcuk.org.uk www.arcuk.org.uk/scotland www.scottishtransitions.org.uk 0131-663 4444 May 2014 © ARC Scotland 2014 Association for Real Change is a registered charity: Registered Charity No. 285575, Scottish Charity No. SCO39129 Design by Bold www.bold-marketing.co.uk ii PRINCIPLES OF GOOD TRANSITIONS. 2 Foreword {{ I welcome the publication of TPrinciples of Transition 2V and the work of the Scottish Transitions Forum to highlight the important issues surrounding transitions, and to bring them to the forefront of policy and practice relating to children and young people. This document outlines the ways in which we can all work jointly together to ensure that transitions are as smooth as possible and that the voices of children and young people are at the centre of decisions made about their future. Transition should be a time when children and young people feel empowered and excited about their options, not concerned about what lies ahead. Given the recent adoption of the Children and Young People (Scotland) Act 2014, this document serves as a timely reminder of how we can Get It Right For Every Child by ensuring that the rights enshrined within the United Nations Convention on the Rights of the Child (UNCRC) are upheld as children and young people experience transition. Transitions are important in the lives of all children and young people. :KHWKHULWLVPRYLQJRXWRIKRPHIRUWKHƬUVWWLPHFKDQJLQJVFKRROV starting to use adult health and social care services or starting a new job or placement, transitions can be both an exciting and a worrying time. For children and young people with additional support needs these rites of passage can become particularly concerning due to an often-complex health and social care landscape and a multitude RIGLƪHUHQWFRQFHUQVDQGLVVXHVWKDWQHHGWREHUHVROYHG I look forward to a future where all decisions about a child or young person are made in their best interests, their views are heard and respected and their rights are embedded within transitions practice. This document is a welcome step towards making this a reality. Tam Baillie ScotlandVs Commissioner for Children and Young People iii PRINCIPLES OF GOOD TRANSITIONS. 2 Contents Foreword by Tam Baillie, ScotlandVs Commissioner for Children and Young People iii The purpose of TPrinciples of Good Transitions 2V 2 What we mean by TtransitionsV 5 Scottish Transitions Forum 8 The seven principles of good transition 15 1. All plans and assessments should be made in a person-centred way 16 2. Support should be co-ordinated across all services 24 3. Planning should start early and continue up to age 25 32 4. Young people should get the support they need 38 5. Young people, parents and carers must have access to the information they need 46 6. Families and carers need support 52 7. Legislation and policy should be co-ordinated and VLPSOLƬHG 54 Principles into practice 58 How to support TPrinciples of Good Transitions 2V 62 1 Scottish Transitions Forum. 2014 The purpose of 1Principles of Good Transitions 29 Members of the Scottish Transitions Forum have prepared TPrinciples of Good Transitions 2V with support from ARC Scotland. Our objective is to improve the quality of care and support for young people with additional support needs who are making the transition to young adult life. We aim to achieve this by providing clear guidance to supporting smooth transitions that are shared by all professionals. Without a positive transition process, children and young peopleVs lives can be negatively impacted, leading to lost RSSRUWXQLWLHVDQGXQIXOƬOOHGSRWHQWLDO 2 PRINCIPLES OF GOOD TRANSITIONS. 2 This document follows the publication of TPrinciples of Good Transitions 1V in 2013. There is a need to fundamentally change the way we support young people with additional support needs to make the transition into young adulthood. This change is needed in legislation, policy and practice across all professional sectors. To help achieve this change, TPrinciples of Good Transitions 2V provides a framework of principles that can be used by the Scottish Government and civil service teams and professionals. This includes people who are responsible for planning and delivering support for children and young people with additional support needs in: r r r r r r r 3DHGLDWULFDQGDGXOWKHDOWK &KLOGDQGDGXOWVRFLDOZRUNDQG social care 3UHHGXFDWLRQ 3RVWHGXFDWLRQ (PSOR\PHQWDQGWUDLQLQJ 7KLUGVHFWRU 3XEOLFVHFWRUVHUYLFHV (such as housing and welfare) 3 Scottish Transitions Forum. 2014 We set out seven clear principles to getting transitions right. These should be adopted by all professional sectors. Throughout this document we have indicated several areas that align with the United Nations Convention on the Rights of the Child (UNCRC) and further information is highlighted. We also list actions that will help put these principles into practice, along with a brief summary of the relevant Scottish legislation and policy that underpins each of the seven principles. Owing to the rapidly changing legislative and policy framework that impacts on transition, including self-directed support, the Children and Young People Act and Health and Social Care integration, we plan to update and issue the TPrinciples of Good TransitionsV each year until 2017. We focus on the transition to young adulthood since the challenges 4 associated with it are widely recognised as being often poorly supported. We recognise that all people make important transitions throughout their lives and we hope that the seven principles will be helpful to those who support people who are experiencing other life transitions. Further information is available on the Scottish Transitions Forum website (www.scottishtransitions.org.uk). This provides more detailed information concerning legislation, policy, practice H[DPSOHVUHVHDUFKHYLGHQFHƬOPVRI young people telling their transition stories and other key matters of concern (eg, transport, challenges in urban/ remote areas and data/IT systems). We hope that this document will also be useful to young people and their carers. We will be working with others to provide this information in accessible formats, which again will be available from the above website. PRINCIPLES OF GOOD TRANSITIONS. 2 What we mean by 1transitions9 For the purpose of this document, TtransitionV is the period when young people with additional support needs (such as a learning disability, autism, sensory impairments, mental health, emotional and behavioural issues, exceptional health care needs and young people in care, among many others) grow from children to young adults. Professionals often associate it with the move from school or college or the Tcase transferV from child to adult services. Professionals refer to this as the Ttransitions processV. Young people moving through transitions come from a wide range of circumstances. Some may live in families, with foster carers, kinship carers or in residential or community settings. No matter their circumstances, all young people with additional support needs have a right to individualised support, to express their views and be part of deciding their own future and the support and care they may need. 5 Scottish Transitions Forum. 2014 Reasons for support for pupils with Additional Support Needs [Rates per 1000 pupils] r 0HQWDOKHDOWKSUREOHP 1.6 r ,QWHUUXSWHGOHDUQLQJ 2.4 r 0RUHDEOHSXSLO 2.5 r +HDULQJLPSDLUPHQW 3.0 r 9LVXDOLPSDLUPHQW 3.9 r /RRNHGDIWHU 6.4 r 3K\VLFDOKHDOWKSUREOHP 8.0 r 3K\VLFDORUPRWRULPSDLUPHQW 9.0 r $XWLVWLFVSHFWUXPGLVRUGHU 11.6 r 2WKHUVSHFLƬFOHDUQLQJGLƯFXOW\HJQXPHULF 13.6 6 r /DQJXDJHRUVSHHFKGLVRUGHU 14.6 r 2WKHU 15.0 r (QJOLVKDVDQDGGLWLRQDOODQJXDJH 15.9 r '\VOH[LD 18.0 r /HDUQLQJGLVDELOLW\ 21.9 r 2WKHUPRGHUDWHOHDUQLQJGLƯFXOW\ 22.3 r 6RFLDOHPRWLRQDODQGEHKDYLRXUDOGLƯFXOW\ 30.5 Achieving a Tpositive destinationV in education, training, health provision or employment is often regarded as success in the transition process. This should not be the whole story. To fully appreciate what transitions are, we must move to a more holistic model where HƪHFWLYHO\VXSSRUWLQJWUDQVLWLRQVLV viewed as part of fundamental rights and the overall well-being of a young person. It is important to stress that transition is an active process that unfolds over a number of years and not a single event (such as leaving school). It is equally important to plan and support later transitions (such as leaving college). Transitions for children with additional support needs happen concurrently across a range of services, including health, education, housing, welfare DQGVRFLDOFDUH7KHHƪHFWLYHVXSSRUW of a smooth transitions process WKHUHIRUHGHSHQGVRQWKHGLƪHUHQW organisations involved having a shared understanding of how the support they provide contributes to the overall well-being of the young person. 7 Scottish Transitions Forum. 2014 Scottish Transitions Forum The Scottish Transitions Forum aims to improve the experience of people with additional support needs, particularly those with high support needs, as they go through life transitions. The Forum focuses on the transition of young people from school or college to adult life. We seek to achieve our aim by: r %ULQJLQJWRJHWKHUSHRSOHZRUNLQJLQWUDQVLWLRQVIRU people with additional support needs. At the start of 2014 the Forum had over 300 members from across Scotland r ,GHQWLI\LQJDQGVKDULQJJRRGSUDFWLFHOHDUQLQJDQGUHVRXUFHV f as highlighted here and at Forum meetings r *HQHUDWLQJQHZLGHDVFKDOOHQJLQJRXUWKLQNLQJ and improving our work practice r ,QYROYLQJDQGFRQVXOWLQJSHRSOHZLWKDGGLWLRQDOVXSSRUWQHHGVDQG IRUWKHLUYLHZVWRLQƮXHQFHDQGJXLGHWKHZRUNRIWKH)RUXP r :RUNLQJFROOHFWLYHO\WRUDLVHDZDUHQHVVLQIRUPDQG LQƮXHQFHDSSURDFKHVWRWUDQVLWLRQVIRUSHRSOHZLWK additional support needs at a local and national level. 8 PRINCIPLES OF GOOD TRANSITIONS. 2 The Scottish Transitions Forum began in 2008. Membership is open to anyone who is committed to improving the transitions for young people with additional support needs. The Scottish Transitions Forum is engaged in Scottish Government initiatives such as the Autism Strategy, the Keys to Life, the Advisory Group for Additional Support for Learning Act and Self-directed Support capacity-building initiatives. Other areas of engagement include Partnership Matters, More Choices More Chances, Opportunities for All and Education Scotland. The Scottish Government is also exploring how transitions can be improved within legislation and policy relating to health care. This is an agenda in which the Scottish Transitions Forum is increasingly engaged. Challenges associated with transitions have been the subject of recent reviews and research including the Doran Review, research undertaken by ScotlandVs Commissioner for Children and Young People, and the National Deaf Children Society. 9 Scottish Transitions Forum. 2014 To LEARN MORE ABOUT US and join the Scottish Transitions Forum PLEASE VISIT OUR WEBSITE AT WWW.SCOTTISHTRANSITIONS.ORG.UK Or contact scott.read@arcuk.org.uk Telephone: 0131-663 4444 PRINCIPLES OF GOOD TRANSITIONS. 2 The Scottish Transitions Forum is supported by ARC Scotland. ARC Scotland promotes the development of high quality, person-centred support for people with a learning disability or other support need. We SULGHRXUVHOYHVLQRXUHƪHFWLYHDQGH[WHQVLYHSDUWQHUVKLSVZLWKSURYLGHU organisations, local authorities, people who use services and their carers across Scotland. Scottish Transitions Forum. 2014 Colin Young is the Senior Policy and Outcomes 2ƯFHUIRUWKH$//,$1&(+LVUROHLVWRH[WHQG the principles of self-directed support into a person-centred health system. Colin has a background in policy having worked for Mencap as the Children and Young PeopleVs &DPSDLJQ2ƯFHULQ/RQGRQ,QDGGLWLRQWRKLV full-time roles, Colin has held positions on the Equality 2025 board and currently sits on the Scotland committee of the European Human Rights Council. +HLVDOVRXQGHUWDNLQJD3K'ORRNLQJDWWKHHƪHFWRI health intervention on children with cerebral palsy. In his spare time Colin pursues acting for TV and on stage. 12 PRINCIPLES OF GOOD TRANSITIONS. 2 1I met with Scott from ARC Scotland in 2012 to talk about my H[SHULHQFHVVLQFHOHDYLQJVFKRRO7DONLQJDERXWWKLQJVLVQRW always easy for me, I have worried a lot and learned to cope with change. Some things have worked out great and some things not. I still have lots of things I would love to do and look forward to living more independently in the future.9 I love Xbox, DVDs, graphic novels and super-heroes. One of the things I enjoy most about being an adult is having independence and going to meet my friends, travelling independently. I need some support initially but once I get going there is no holding me back. I left school in 2011. School wasnVt always easy for me but I had some great times and met some good friends I was ready to leave but it was a worrying time, you never really know what is going to happen until the last minute and that is not good for anyone. I enjoyed college however things didnVt work out too well. I loved making friends but college is too busy and unpredictable. I have had some amazing experiences since leaving and was really lucky to be part of a project with Artlink starting in 2011 where I met Alan Grant a Graphic Novelist from the 2000AD and Marvel fame. We wrote a story based on my interest in super-heroes and zombies. I have had lots of celebrity moments; it has been a life changing experience. 13 PRINCIPLES OF GOOD TRANSITIONS. 2 The Seven Principles of Good Transitions 7KH6FRWWLVK7UDQVLWLRQV)RUXPKDVLGHQWLƬHG seven principles to improve transitions: Principle 1 All plans and assessments should be made in a person-centred way 16 Principle 2 Support should be co-ordinated across all services 24 Principle 3 Planning should start early and continue up to age 25 32 Principle 4 Young people should get the support they need 38 Principle 5 Young people, parents and carers must have access to the information they need 46 Principle 6 Families and carers need support 52 Principle 7 Legislation and policy should be FRRUGLQDWHGDQGVLPSOLƬHG 54 15 Scottish Transitions Forum. 2014 This means: r <RXQJSHRSOHVKRXOGEHDWWKHFHQWUH of their transition planning r <RXQJSHRSOHVKRXOGKDYH access to a personal outcomes approach and person-centred planning in its truest sense r 7KHUHVKRXOGEHDVKDUHGXQGHUVWDQGLQJDQG commitment to person-centred approaches across all services r $OO\RXQJSHRSOHVKRXOGKDYHDVLQJOHSODQ 16 This principle is supported by the following legislation and policy: r 7KH8QLWHG1DWLRQV&RQYHQWLRQ on the Rights of the Child (UNCRC) r *,5)(&SULQFLSOHVDVGHWDLOHG in the Children and Young People (Scotland) Act 2014 and associated policy r 6RFLDO&DUH6HOIGLUHFWHG Support) (Scotland) Act 2013 options and principles r 3HUVRQDOLVDWLRQDQGSHUVRQFHQWUHG planning practices and philosophies r &KLOGoVSODQDQGFKLOGUHQoVULJKWV as detailed in the Children and Young People (Scotland) Act 2014 r $GYRFDF\ r $GXOWVZLWK,QFDSDFLW\6FRWODQG Act (2000). Guardianship and power of attorney r $GXOW6XSSRUWDQG3URWHFWLRQ (Scotland) Act (2007) r 1+66FRWODQG4XDOLW\6WUDWHJ\ of which person-centred is a quality ambition r %HWWHU+HDOWK%HWWHU Care Health Policy r $)DLUHUDQG+HDOWKLHU6FRWODQG 17 Scottish Transitions Forum. 2014 Young people should be at the centre of their transition planning The Scottish Government and professionals have made clear, in current legislation and practice documents, that the voices of children, young people, their families and carers should be listened to and their opinions taken into account in matters or procedures DƪHFWLQJWKHP7KLVLVLQOLQHZLWKDUWLFOH 12 of the UNCRC (respect for the views of the child). Despite this, many people report that they are not fully involved or consulted in processes surrounding WKHVXSSRUWWKH\DUHRƪHUHG Young people and their families and carers are best placed to know what they need to make things work for them, provided they have access to the right information and support. Ensuring their right to say what they think should happen, to be in control of their own lives and to make their own decisions and have their opinions taken into account leads to informed choice and better outcomes. This should still be considered when there are issues concerning guardianship and capacity. All actions concerning the child should take full account of his or her best interests and this should be a primary consideration in making decisions that PD\DƪHFWWKHP81&5&DUWLFOH 18 Young people should be given every opportunity to make independent and informed decisions about their future. Direction and guidance should be provided to young people in exercising their rights as enshrined in the UNCRC, in a manner consistent with the evolving capacities of the young person (UNCRC article 5). This should lead to their having as much say as they wish in how their parents are involved in transitions planning. This has to be balanced with the needs and wishes of parents and carers. Young people should be given every opportunity to make independent and informed decisions about their IXWXUHDVGHƬQHGE\WKHFRQFHSWRI the evolving capacities of the child in the UNCRC, which means that children and young people gradually assume greater autonomy and independence, with the appropriate support and guidance of their parents and carers. Consideration must be given to the GLƪHULQJIRUPVRIFRPPXQLFDWLRQ and communication styles of young people. All professionals will need to ensure the full involvement of young people in the planning process, and this means being able to communicate with and understand the child or young person. Parents and carers are usually the most appropriate source of advice PRINCIPLES OF GOOD TRANSITIONS. 2 _At one point social work was all about keeping people safe and now it is keeping people safe while enabling them to lead a life that they always wanted to lead.` - Social worker, Putting People First on a young personVs communication style. More information can be found in the Scottish GovernmentVs TA right to speakV document. Young people should have access to a personal outcomes approach and person-centred planning in its truest sense Person-centred planning is well evidenced as a successful way to improve outcomes for young people in transition and has been used to great HƪHFWIRUPDQ\\HDUVSDUWLFXODUO\E\ the voluntary sector. Despite this, these approaches are not routinely used in transition planning. A trained planner who operates externally to health, education and VRFLDOFDUHWRSUHYHQWFRQƮLFWVRILQWHUHVW should facilitate person-centred plans, in their fullest sense. If the Transitions Co-ordinator (see Principle2) were trained in these methods it would be ideal for them to facilitate this process. Not all young people may want a person-centred plan in its fullest sense. However they must have their rights respected and should be provided with the relevant information they need and be supported to choose what is right for them. A choice of other planning approaches should be available. This applies to the Additional Support for Learning planning and its associated methods. Independence, choice and control and outcomes should be central to planning processes, whatever their nature, in line with the Social Care (Selfdirected Support) (Scotland) Act 2013. There should be a shared understanding and commitment to person-centred approaches across all services All assessments and plans for those in transition should follow the core person-centred principles described on page 20. Currently, there is no agreed GHƬQLWLRQEHWZHHQSURIHVVLRQDOJURXSV about what Tperson-centredV actually means, and interpretation can vary. To further complicate this, other terms such as Toutcomes-based assessmentV (such as TTalking PointsV), Tco-productionV, Tco-designV and TpersonalisationV are all used to describe similar approaches. Outcomes based on self-directed support principles and guidance should form the basis of the young personVs transitions (UNCRC article 3). Too frequently, assessment decisions are based on resource or needs-led statutory concerns rather than individual outcomes. Outcomes and needs, even though linked, DUHYHU\GLƪHUHQWSKLORVRSKLHVZKHUH need represents the barriers that have to be overcome to reach outcomes. 19 Scottish Transitions Forum. 2014 Person-centred planning, in its truest sense, is not the same as need led or client centred assessment. Needs in assessment are associated with what people are eligible for funding for via interpretation of policy and resources of the Local Authority. Person-centred planning, in its truest sense goes beyond this and explores peopleVs aspirations, and is not limited to entitlement of services. Person-centred planning is: Person-centred planning is not: r $SRZHUIXOZD\WRVXSSRUWFKDQJH r $GLƪHUHQWZD\RIZRUNLQJWRJHWKHU r $EHWWHUZD\WROLVWHQDQG respond to people r 'LƪHUHQWIRUGLƪHUHQWSHRSOH r $QLQYLWDWLRQWRSHUVRQDO commitment r :RUNLQJWRZDUGVLQFOXVLYH communities r )RUDQ\RQHZKRZDQWVLW r $FXUHDOORUDQHQGLQLWVHOI r -XVWFRORXUHGSRVWHUVLQVWHDG of paper work r -XVWDPRUHVRSKLVWLFDWHG assessment r $VWDQGDUGSDFNDJH r $VHUYLFHURXWLQH r -XVWDEHWWHUZD\WRSXWWRJHWKHU service packages r -XVWIRUWKRVHZKRDUHUHDG\ &DVHVWXG\ Person-centred planning -HDQDQGKHUGDXJKWHU/XF\SUHSDUHGIRU/XF\oVWUDQVLWLRQUHYLHZE\GRLQJ DQ(VVHQWLDO/LIHVW\OH3ODQ*UHDWHƪRUWZHQWLQWRSURGXFLQJDUHDOO\GHWDLOHG picture of what matters for Lucy. Though several people at the meeting were really enthusiastic about the plan and said how helpful it was for them as professionals to think about their contributions to LucyVs future, the social worker was apologetic. She said, l IVm sorry we donVt recognise Essential Lifestyle Planning. We donVt have the resources to implement it. We can only PHHWQHHGVQRWZDQWVq-HDQOHIWWKHPHHWLQJIHHOLQJFUXVKHGDQGSK\VLFDOO\VLFN The social worker was confusing assessment for council services and broader life SODQQLQJ-HDQDQG/XF\GLGQRWH[SHFWVRFLDOVHUYLFHVWRGHOLYHUHYHU\WKLQJLQWKH plan. They wanted the professionals to listen to what was important to Lucy and her family and work out what they could do to contribute towards achieving these things. They also wanted help with problem solving other sources of support and resources. Taken from Helen Sanderson f What is Person Centred Planning 20 Scottish Transitions Forum. 2014 _I hated reviews a I came out more upset than I went in. I felt that people were talking over me a there was no eye contact. I felt like a shadow.` - School leaver, Enquire Young people should have a single plan The lack of a shared planning SURFHVVOHDGVWRGLƪHUHQWVHFWRUV PDNLQJWKHLURZQSODQVIRUGLƪHUHQW but overlapping aspects of the young personVs life. Each time, a young person, their parent or carer has to tell their VWRU\WRDGLƪHUHQWSURIHVVLRQDO This is frustrating for those involved, a duplication of work and not consistent with person-centred approaches. The ChildVs plan detailed in the Children and Young People (Scotland) Act 2014 seeks to remedy this. The ChildVs plan should include all plans relevant to the planning process, including the co-ordinated support plan, and should remain the property of the child or young person for whom it has been prepared. It should be a Tcare passportT that accompanies them whenever and wherever they contact health or social care services. Professionals in these areas, especially at transition, should refer to it to provide seamless assessments. 22 In addition to availability of person-centred processes, young people should therefore have one ChildVs plan as laid out in the 2014 Act. The ChildVs plan should also include any person-centred planning input that has gone on outside of statute led planning. More information on this will be available in the guidance being issued in 2016 to support these duties in the Children and Young People (Scotland) Act 2014. The Getting it Right for Every Child (GIRFEC) assessment (which is included as part of the ChildVs plan) in childrenVs services currently has no counterpart in adult services. Outcomes-based assessment tools, used by adult health FDUHDQGVRFLDOFDUHFDQEHYHU\GLƪHUHQW from those used in childrenVs services. If GIRFEC principles could be applied to adult services it would provide a basis for early indicative budgets (as set out in the Social Care (Self-directed Support) (Scotland) Act 2013, and lead to less duplication of assessment. In addition, parents, carers and young people will already be familiar with this assessment procedure from childhood, and therefore adoption of its principles in adult services will provide a smoother pathway. 6RPHJXLGLQJGHƬQLWLRQV GIRFEC TGIRFECV stands for TGetting It Right For Every ChildV and is the legislated approach within the Children and Young People (Scotland) Act 2014. It provides a consistent way for people to work with all children and young people. It is the bedrock for all childrenVs services and can also be used by practitioners in adult services who work with parents or carers. The GIRFEC approach helps practitioners IRFXVRQZKDWPDNHVDSRVLWLYHGLƪHUHQFH for children and young people f and how they can act to deliver these improvements. GIRFEC is being threaded through all existing policy, practice, strategy and legislation DƪHFWLQJFKLOGUHQ\RXQJ people and their families. Childs Plan The Children and Young People (Scotland) Act 2014 requires a ChildVs plan to be developed for an individual child if they have a Twell-being needV that requires a targeted intervention (s.31). A targeted intervention is one that is GLƪHUHQWWRWKHVHUYLFHVSURYLGHGWR children generally by health boards, local authorities, managers of grant aided schools or proprietors of independent schools (s.31 (4) read with s.41). The duty to prepare the ChildVs plan lies with the responsible authority (ie, the health board for pre-school children, the local authority, and grant-aided or independent school for ages 5 to 18). Existing statutory requirements remain and will become part of the wider ChildVs plan. These are: r /RRNHGDIWHU&KLOGSODQXQGHU the Looked After Children (Scotland) Regulations 2009 r &RRUGLQDWHG6XSSRUW3ODQXQGHU the Education (Additional Support for Learning) (Scotland) Act 2004. The education authority prepares this when a child or young person requires VLJQLƬFDQWDGGLWLRQDOVXSSRUWIURPWKH education authority and from at least one other agency from outwith HGXFDWLRQLQRUGHUWREHQHƬWIURP VFKRROHGXFDWLRQ7KHUHDUHVSHFLƬF rights of appeal in relation to this plan. Scottish Transitions Forum. 2014 This means: r (GXFDWLRQPXVWWDNHWKHOHDGLQ co-ordinating transition services r 7KHUHVKRXOGEHDFRRUGLQDWHDSSURDFK to transitions in each local authority area r $WUDQVLWLRQVFRRUGLQDWHUVKRXOG be available throughout the transitions period to all young people who need them r 7UDQVLWLRQVSURFHVVHVVKRXOGEHHYDOXDWHG r 6WDƪWUDLQLQJVKRXOGLQFOXGH an understanding of all aspects of transition 24 PRINCIPLES OF GOOD TRANSITIONS. 2 Professionals need to be aware of: r 1DPHG3HUVRQDQG/HDG3URIHVVLRQDODVGHWDLOHGLQ the Children and Young People (Scotland) Act 2014 r 3XEOLF%RGLHV-RLQW:RUNLQJ6FRWODQG$FW r 5ROHVRIHGXFDWLRQDQGRWKHUVWDWXWRU\DQGWKLUGVHFWRUSURIHVVLRQDOV r 7UDQVLWLRQV&RRUGLQDWRUZKHUHWKH\H[LVW r 7UDQVLWLRQVWHDPVZKHUHWKH\H[LVW r 7UDQVLWLRQV)RUXPVZKHUHWKH\H[LVW r &RQWLQXHG3URIHVVLRQDO'HYHORSPHQWRSSRUWXQLWLHVDQG other post registration learning requirements. Education must take the lead in co-ordinating transition services It is suggested in recent legislation and policy consultation that a schoolVs named person or lead professional will be responsible for the co-ordination of young peopleVs transition under the terms of the Education (Additional Support for Learning) (Scotland) Act 2004, as amended, and in line with the Children DQG<RXQJ3HRSOH6FRWODQG$FWGHƬQLWLRQRID named personVs duties. Up until this point statutory responsibility for co-ordination has been unclear, even though it is the duty of education to carry out transitions planning under the 2004 Act. The named person is responsible for the ChildVs plan and these new duties should strengthen this responsibility and accountability. The named personVs duties are ambiguous if a young person is in a residential school setting. It would make sense for the named person from that setting to lead the transitions planning, however this is currently under discussion (see CELCIS for more information). The ChildVs plan and other assessments should extend into adult services to help ensure continuity through the transitions period (see Principle 3). These roles are aspirational and each local authority ZLOOEHLQWHUSUHWLQJWKHGHWDLOVGLƪHUHQWO\ and in line with their individual plans. 25 Scottish Transitions Forum. 2014 There should be a co-ordinated approach to transitions in each local authority area Young people with additional support needs may come into contact with numerous practitioners in the ƬHOGVRIKHDOWKHGXFDWLRQDQGVRFLDO FDUH(ƪHFWLYHFRRUGLQDWLRQRI transitional care and support at a local level is therefore critical, particularly for those with learning disabilities or multiple and complex needs. Cross-professional partnership working does exist. However, in many cases organisations can be unsure of each otherVs roles and often do not engage with one another. A local transitions forum will help to co-ordinate support IRUWUDQVLWLRQVDFURVVGLƪHUHQWVHUYLFHV and address the support needed for future transitions. The local transitions forum should consist of, but not be limited to: r &KLOGUHQDQG\RXQJSHRSOH (UNCRC article 12) r 3DUHQWVDQGFDUHUV r +HDOWKDQGDOOLHGKHDOWK professionals from paediatric and adult health settings 26 r 6NLOOV'HYHORSPHQW6FRWODQG /careers advice r 2SSRUWXQLW\IRU$OOORFDO authority representatives r 6RFLDOZRUNsFKLOGDQGDGXOWVHUYLFHV r 7KLUGVHFWRUVHUYLFHVVXFKDV support, advice and advocacy r (GXFDWLRQSURIHVVLRQDOVSUH and post-16 education r /RFDODUHDFRRUGLQDWRUV r 3ULPDU\DQGVHFRQGDU\ care representatives r (OHFWHGPHPEHUV Other services or individuals that are key to commissioning, workforce GHYHORSPHQWRUFDQRƪHUFRRUGLQDWHG DQGUHVSRQVLYHVXSSRUWVSHFLƬFWRDORFDO authority should also be included. Where transition processes have been explored in a local authority (via a transitions forum, for example), it has led to improvement in local practice. However, how this will work across the whole of Scotland is still in its infancy. What are transitions teams, forums and co-ordinators? Transitions Forums at local authority level provide a way for all those working in the area of transition to explore challenges and solutions that will help to improve practice. A good example of how this is being developed is by NDCS and Audiology in pan-Ayrshire local authorities. They are currently establishing a forum that explores transitions for deaf young people. Transitions Teams (such as in the City of Edinburgh Council) is a team within the local authority created to support transitions independently from children and adult services. Each ORFDODXWKRULW\KDVGLƪHUHQWSULRULWLHV and processes and therefore the way these teams are organised can vary greatly across Scotland. However this is done, they must be tailored to meet the needs of children and young people rather than led by other drivers. Transitions Co-ordinators Transitions Co-ordinators (such as in the Highlands and the Islands) are individuals that support transitions across education, health and social work. Their role is described below. They work where their expertise is needed due to the particular needs of the child or young person. Because they are DZDUHRIGLƪHUHQWGULYHUVWKH\FDQ help to smooth transitions across GLƪHUHQWSURIHVVLRQDOVHFWRUV7KH\ may also be trained in advocacy and person-centred planning approaches. 27 Scottish Transitions Forum. 2014 Case Study Transitions Teams a how do they work? Hamish left special school in Edinburgh in the summer of 2011. Prior to this he had had annual transition meetings at his school. In attendance at these meetings was Hamish, his parent/ guardian, ASL teacher (and head teacher), Skills Development Scotland representative (careers service) and duty (un-allocated) social worker. Everyone present was responsible for developing a plan for HamishVs transition. Hamish wanted to go to college when he left school, so his Skills Development Scotland worker supported him to apply for appropriate courses, and to make his own choices. The school supported Hamish to attend various taster sessions at the college so that he could feel more secure and familiar with the environment once he had left school. The social worker ensured the plan was appropriate and 28 all agencies involved were meeting their obligations whilst gathering various pieces of information to ensure the correct supports could be put in place. Hamish was allocated a social worker from EdinburghVs 7UDQVLWLRQ7HDP. They were responsible for supporting his whole transition by ensuring that the transitions plan was put into place and continuing to be available after this had happened. HamishVs social worker completed the adult assessment and secured the funding for transport to and from college. Since he was attending a supported course he did not require any other support at this time. Hamish started college with no problems and remained there for two years. After this Hamish wanted to leave college and move on to day support. His social worker was again allocated PRINCIPLES OF GOOD TRANSITIONS. 2 to update the previous assessment and seek the funds for day support. Hamish was assessed as having a critical level of need, meaning he could have some funded support. The next step was to discuss how this funding would be provided. His mum decided that she would like to manage a direct payment on her sonVs behalf under the principles of Self-directed Support. This means that money is put into a bank account to allow someone to buy their own services instead of the council arranging services for them. HamishVs mum decided it would be best for him to use a local provider for half of his week. This approach enabled Hamish to have a good level of independence and meant he would remain in touch with people he knew who also attended this service. The other half of his week went WRDQRWKHUSURYLGHUZKRRƪHUHGKLP more variety and options to develop his interests in art. The direct payment also included respite provision for 30 nights per year. Hamish and his family decided to use 15 nights as respite and this was included in their direct payment. The provider invoiced Hamish for the costs of the service and his mum ZRXOGFDOOWKHLUƬQDQFHGHSDUWPHQW and use the DP card to pay them. HamishVs mum said: lThe process took longer than expected but the end result was the best for Hamish. The social worker was there to assist with ideas on where and who could help to get Hamish what he required, which is helpful and important for parents.m 29 Scottish Transitions Forum. 2014 A transitions co-ordinator should be available throughout the transitions period to all young people who need them Transitions processes should be evaluated Transitions co-ordinators should be available to all young people who need them. This role is distinct from the named person. An example of this approach can be found in the Highlands region. Young people should be consulted and their wishes taken into account when choosing their transitions co-ordinator. There should be a clear understanding amongst all professionals, the young person and their family of what the role of the transitions co-ordinator is. To ensure smoother transition, they should remain involved until the young person is settled in the adult system of health and social work. For more information on this, see our website. It is not possible to know if transitions experiences are improving and young peopleVs outcomes are being met without evaluating what is happening. Partner agencies and all key individuals in the transitions process should meet and agree a Ttransitions pathwayV in WKHLUORFDODXWKRULW\DUHD-RLQWZRUNLQJ should be built into national and local authority considerations and workforces, including the work of the third sector, LQWKHVHDUHDV7KH3XEOLF%RGLHV-RLQW Working) (Scotland) Act 2014 is making it easier for local authorities to do this. The transitions pathway should be evaluated on a regular basis and be clearly available and understandable. The evaluation and pathway may be VSHFLƬFWRRQHDUHDRIDGGLWLRQDOVXSSRUW need or involve more than one area. Health and social care partnerships should actively consider the need for an adolescent nurse specialist/transition co-ordinator and, where these professionals are already in post, their skills should be fully used in the co-ordination and delivery of the transition process. 30 PRINCIPLES OF GOOD TRANSITIONS. 2 _In the end we couldn9t have managed without the Local Area Coordinator… they helped us understand everything from directing our RZQVXSSRUWWRZKDWEHQHƬWVZHQHHGHGWRRDQGDGYRFDWHGRQRXUEHKDOI we know its not what they are meant to do but without them. We would have been lost.` a Parent discussing their son9s transition 6WDƪWUDLQLQJVKRXOGLQFOXGHDQXQGHUVWDQGLQJRI all aspects of transition High quality training should include an understanding RIWKHHƪHFWWKDWOHJLVODWLRQDQGSROLF\KDYHRQDOODUHDV of transition and should not be limited to professional silos. Along with this, there should be information DERXWWKHGLƪHUHQFHVLQSURIHVVLRQDOFXOWXUHV7KLV will help to tackle the lack of understanding amongst professionals and agencies of each otherVs roles. Everyone working in transitions should have access to innovative and aspirational learning as part of their initial training and continuing professional development. 31 Scottish Transitions Forum. 2014 This means: r 3ODQQLQJPXVWEHDYDLODEOHIURPDJH 14 and be proportionate to need r 3ODQVPXVWEHƮH[LEOHDQG accommodate change r &KLOGUHQoVSODQVDQGDVVHVVPHQWV should be adopted by adult services r 7UDQVLWLRQSODQQLQJDQGVXSSRUWVKRXOG be legislated to continue to age 25 32 PRINCIPLES OF GOOD TRANSITIONS. 2 The Education (Additional Support for Learning) Act 2004 amended and its associated Codes of Practice place a duty on schools to start transitions planning at least a year before leaving school. Professionals need to be aware of: r The Childs Plan as detailed in the Children and Young People (Scotland) Act (2014) r 7KH(GXFDWLRQ$GGLWLRQDO Support for Learning) Act 2004 r 7KHDPRXQWRIELRSV\FKRVRFLDO changes that occur at this time r (DUO\,QGLFDWLYHEXGJHWVDVODLG out in the Social Care (Self-directed Support) (Scotland) Act 2013 r 6HOIHƯFDF\DQGUHVLOLHQFH r 2SSRUWXQLWLHVIRU$OO r 0RUH&KRLFHV0RUHFKDQFHV r 3RVW3ROLF\DQG Practice framework r 3DUWQHUVKLS0DWWHUV 33 Scottish Transitions Forum. 2014 Planning must be available from Age 14 and proportionate to need There is substantial evidence to demonstrate that early intervention KDVDSURIRXQGHƪHFWRQIXWXUHOLIH planning (UNCRC articles 2,3,12 and 28). This approach has been put into local authority policy in Highland and Islands. Unfortunately, for many young people it does not happen. To help make sure that it does, Education Scotland, National Health Care Standards and Social Care inspectorate bodies should review the provision of transitions planning for 14 year olds in their inspection criteria. An early start to transition planning can support the beginning of low-level interventions around transitions. This could include the beginning of planning about: r %HQHƬWFKDQJHV r Empowerment of parents and young people r -RLQHGXSSODQQLQJ r Managing the reality of adult health and social care services r Potential person-centred planning opportunities 34 r Explaining outcome-led assessments r 6SHFLƬFKHDOWKSUREOHPV and self-management r Employment and training needs and opportunities r Discussing what choices and resources are available as the transition process continues. This is also the time to establish an early indicative budget. Parents, carers and young people need to be made aware of this at an early age to help inform the planning process. The experience of many young people leaving care, however, is that early planning leads to an expectation of leaving and inadvertently causes anxiety that their transition is imminent. This should not be the case. Early planning does not mean an early leaving date and anxiety about this should be taken into account in the early stages. What early planning means needs to be clearly understood and practised by schools, and shared by them with parents and young people. PRINCIPLES OF GOOD TRANSITIONS. 2 p3HRSOHDURXQG\RXPLJKWJHWKXƪ\DQGDQJU\EXW\RXKDYHWR remember that you are in control and you can say no you want things to be this way… ultimately you are in control and there are people to help you stay in control.` a Young person at college 3ODQVPXVWEHƮH[LEOHDQG accommodate change Young peopleVs needs and wishes will evolve over the transitions period, so plans begun at an earlier date should be regularly checked and updated by the named person or lead professional in partnership with the young person, their parents and carers and the team around them. Reviews should be held when necessary. Children9s plans and assessments should be adopted by adult services Adult services should use the ChildVs plan as an integral part of adult service outcome-based assessment at transition. The plan should be the starting point for adult social work and health servicesV outcome-focused assessment. This plan should help provide an early indicative budget to help achieve continuity as the young person moves to adult services in line with the Social Care (Self-directed support) (Scotland) Act 2013 and the joint provision of budgets. It is important early on to establish the supports that will not change, which can help to address anxieties and fears that are associated with this time. This helps to provide not only indicative budgets but also outcome-based assessments that lead from one service area to the next. The GIRFEC assessment framework, which aligns with the Curriculum for Excellence, should be extended to adult services by health and social care. The Curriculum for Excellence allows for development of skills that directly relate to transitions processes and should be followed up by Community Learning and Development, colleges and schools. An example of how transition education can be incorporated into the curriculum is demonstrated by the work carried out on transitions by Playback plc. 35 Scottish Transitions Forum. 2014 _One of the hardest things is understanding the processes when you change services... it ends up being the small ones [processes] that cause the biggest delay.` a Young person discussing their transition Transition planning and support should be legislated to continue to age 25 Post-16 transitions are often treated as a leaving school TeventV rather than an on-going process lasting several years. Too often TtransferV (of case) or leaving school is seen as the transition rather than a process that evolves over several years. As a result, support for subsequent transitions is often lacking. All young people with additional support needs should have support to plan transitions up to their 26th birthday. (This is legislated for looked-after children in the Children and Young People (Scotland) Act 2014). Support systems provided by Skills Development Scotland and Opportunities for All enable local authorities to provide VXSSRUWLQƬQGLQJZRUNHGXFDWLRQ 36 and training. However, these should not be the only focus for transitions. Well-being outcomes (as indicated by GIRFEC and Self-directed Support) should be at the heart of this process. Support with care needs, short breaks, health services, leisure and social DFWLYLWLHVEHQHƬWVDQGLQFRPHSRVW guardianship and powers of attorney may need to be a part of this process. These avenues of continued support should be explored in greater detail to HQDEOHWKHPWRSURYLGHPRUHHƪHFWLYH opportunities for young people with additional support needs. While Opportunities for All and Skills Development Scotland have limited capacity in these areas and do not have the remit to focus outwith employment concerns and embrace well-being, local area co-ordinators provide a mechanism by which young people can access support. Scottish Transitions Forum. 2014 Principle 4 Young people should get the support they need This means: r (OLJLELOLW\FULWHULDVKRXOGQRWEHWKHRQO\ measure of entitlement to support r 6HUYLFHVVKRXOGEHDOORFDWHGWR support outcomes, not needs r 0RUHVXSSRUWVKRXOGEHPDGHDYDLODEOHIRU those who do not meet eligibility criteria r )XUWKHUHGXFDWLRQSURYLVLRQVKRXOGQRW be a substitute for lack of services r 3ODQQLQJDQGFRPPLVVLRQLQJVHUYLFHVVKRXOG be done in partnership with young people r $GYRFDF\VKRXOGEHDYDLODEOHDWWKH start of the transitions process Professionals need to be aware of: r Social work (Scotland) Act 1968 f the right to an assessment, the right to a carerVs assessment r Children (Scotland) Act 1995 f right to an assessment of a childVs need r Chronically Sick and Disabled Persons (Scotland) Act 1972 r Social Care (Self-directed Support) (Scotland) Act 2013 r Human Rights Act 1998 r Equality Act 2010 r Children (Leaving Care) Act 2000 r Children and Young People (Scotland) Act 2014. 38 PRINCIPLES OF GOOD TRANSITIONS. 2 Eligibility criteria should not be the only measure of entitlement to support Eligibility criteria set the standard by which needs are eligible for state funded support. Under the Social Care (Self-directed Support) (Scotland) Act 2013, the way eligibility criteria operate in local authorities should change to mirror what has been termed the Resource Allocation System (RAS), which represents the philosophy of an equal share of money to help support outcomes. How local authorities work out their individual RAS is down to their own preference but, as matters stand, access to state funded support is provided only if individuals meet what is termed TsubstantialV or TcriticalV need. In some local authorities it is limited to critical need only. There are concerns about inequities and inconsistencies in the application of eligibility criteria across and between local authorities. There is also concern that owing to the inequity of resources between children and adult services, the resources available pre-transition can be much greater than those available post-transition. If you combine this with the ending of school support, many children and young people will receive greatly reduced services as they make the transition from school (UNCRC articles 2,3,4,25,27 and 28). This situation, coupled with FRPSOLFDWHGZHOIDUHEHQHƬWVUHDVVHVVPHQWRIWHQOHDYHV young people with additional support needs substantially ZRUVHRƪWKDQZKHQWKH\ZHUHFKLOGUHQ:KHUHHOLJLELOLW\ criteria are in place, they should be implemented consistently and fairly, and the reasons for decisions either way should be clearly communicated (UNCRC article 2). 39 Scottish Transitions Forum. 2014 _When I have a care assessment I have to be careful how I talk about VWXƪf\RXGRQoWJHWDQ\VHUYLFHXQOHVV\RXDUHGHHPHGDWULVNDQGVRFLDO services put something in to stop you being at risk, that9s the only basis on which you get a service. You have to play it carefully. You don9t want to be so at risk that you get put in residential care or not allowed out or something but you need to be enough at risk to get a service.` a Young person talking about services in transition Services should be allocated to support outcomes, not needs Outcomes should not just be about mitigating risk, but about enabling people to have control and choice and to live as independent a life as possible. The Self-directed Support legislation and other agendas, such as the Autism Strategy, Keys to Life, Personalisation and Reshaping Care, agree that there is a considerable value in pursuing alternative supports to publicly delivered services in WKHLUWUDGLWLRQDOIRUP2ƪHULQJVXSSRUW to enable people to be more connected in their local communities will help to enhance and nurture both individual and community health and well-being. It has been suggested that the RAS should mirror the well-being indicators (termed SHANARRI) that are applied via the GIRFEC policy, as every outcome should align to these areas and therefore merit funding. However, when a young person moves into adult services this is no longer 40 the case and resources are once more allocated according to adult service criteria based on need (risk prevention) rather than enablement (outcomes). This can lead to families putting themselves at risk to get the funded services they need just to maintain their way of life. It can mean painting a worse case scenario to those who are assessing them, because they are aware that only the most negative of situations are eligible for support (UNCRC articles 2,3,24 and 27). Portioning resources within a risk-management model prevents childrenVs and young peopleVs outcomes being the focus of resource allocation. Rather, it looks at critical and substantial needs (ie, risk-reducing measures). 7KXVWKRVHZKRPD\EHQHƬWJUHDWO\ from preventative services are denied access to them unless third sector services provide them through initiatives funded from other sources. :KDWLV6+$1$55," 6+$1$55, is an acronym that represents the areas of a childVs wellbeing at various stages of their lives. It is used with the Getting It Right For Every Child assessment framework. It stands for: Safe Protected from abuse, neglect or harm +ealthy High standards of physical and mental health; support to make healthy, safe choices Achieving Support and guidance in learning - boosting VNLOOVFRQƬGHQFHVHOIHVWHHP Nurtured Having a nurturing and stimulating place to live and grow Active Opportunities to take part in a wide range of activities Respected Given a voice, and involved in the decisions WKDWDƪHFWWKHLUZHOOEHLQJ Responsible Taking an active role within their schools and communities ,ncluded Getting help and guidance to overcome inequalities; full members of the communities in which they live and learn. Scottish Transitions Forum. 2014 _Ultimately it9s the man in the counting house who makes the decision about what [package of care] you should get… and the social worker has to just get on with it, its not the social workers fault there isn9t enough for everyone.` a Parent talking about package of care for his sons More support should be made available for those who do not meet eligibility criteria Further education provision should not be a substitute for lack of services Without some support (even a little) many young people with additional support needs fail to achieve as much as they are capable of. There are VHUYLFHVWKDWKHOSWRƬQGHPSOR\PHQW RSSRUWXQLWLHVIRUH[DPSOH5HDO-REV and Project SEARCH. Support is also available through Skills Development Scotland and Opportunities for All, but they come with their own eligibility criteria for support. Opportunities for All can work with young people up to age 19 (or 21 in exceptional circumstances). Further education plays an important role in supporting many young peopleVs personal and career development. However, some young people with additional support needs, particularly those with learning disabilities, are referred to college courses as a substitute for the universal services they had when they were children (UNCRC article 28) and because it is perceived that there is nowhere else for them to go. However, this does not address the full issue, as not all young people with additional support needs are able to achieve open employment. They should have opportunities to engage with their community in ways that best helps them to be included and valued. Community advocacy, citizenship and engagement projects can help people achieve this. A spend-to-prevent approach should be investigated to look at the FRVWYVEHQHƬWWRORFDODXWKRULWLHV of working in this way. 42 7RWUXO\VXSSRUW\RXQJSHRSOHZLWK DGGLWLRQDOVXSSRUWQHHGVZHPXVW WKLQNDERXWKRZHOLJLELOLW\FULWHULDDQG IXQGLQJIRUVHUYLFHVVXFKDVFROOHJH 6NLOOV'HYHORSPHQW6FRWODQGDQGRWKHUV FDQEHSHUVRQDOLVHGLQFRQMXQFWLRQZLWK KHDOWKDQGVRFLDOFDUHEXGJHWVWRDOORZ IRUGLƪHULQJPRGHOVRIVXSSRUWLQWKH FRPPXQLW\7KLVZRXOGOHDGWRPRUH SRVLWLYHRXWFRPHVDQGRSSRUWXQLWLHV WKDWDUHQRWFXUUHQWO\DYDLODEOH PRINCIPLES OF GOOD TRANSITIONS. 2 _Leaving child and adolescent mental health services felt like I was falling RƪDFOLƪ,ORVWWKHVXSSRUWDQGIHOOWKURXJKWKHJDSVf2QFH\RXDUH they treat you like you are responsible, but overnight that doesn9t change, we still need that support.` a Young person from Young Minds focus group Planning and commissioning services should be done in partnership with young people Research and project work demonstrate that young people and their families often feel alienated and disconnected from the planning and commissioning SURFHVVHVWKDWDƪHFWWKHP Young people should be encouraged, DQGJLYHQWKHRSSRUWXQLW\WRLQƮXHQFH and inform the commissioning processes of local authorities (UNCRC article 3). Where these opportunities do QRWH[LVWHƪRUWVVKRXOGEHPDGHWR develop them. The co-production of services will have a positive impact on commissioning the most needed and appropriate services. A useful forum for engagement can also be found in Tage-bandedV or Tage-dedicatedV adolescent clinics. These clinics can help health and social care work with young people to explore opportunities needed in the local authority, community and in services provided to enable DUHDOGLƪHUHQFHWREHPDGH Initiatives such as the National Standards for Community Engagement and Charter for Involvement provide useful frameworks to help structure and support involvement of this nature. 43 Scottish Transitions Forum. 2014 Advocacy should be available from the start of the transitions process Advocacy should be available to all who need it, particularly if there are concerns from families and young people about having their wishes heard. 7KHRƪHURIDGYRFDF\VKRXOGEHPDGHDWWKHVWDUWRIWKHWUDQVLWLRQVSURFHVV and be available throughout. This is especially relevant for those involved with looked-after children and young people or guardianship. Case Study &RPSOH[KHDOWKFDUHQHHGV and transition: Sam is a 20-year-old man who has RYHUFRPHPDQ\GLƯFXOWLHVWKURXJKRXW his life. He has a condition known as Duchenne Muscular Dystrophy, severe scoliosis, is wheelchair dependent and is ventilated 24 hours per day. Sam has been looked after by the local authority and was in a residential school for a QXPEHURI\HDUV6DPKDVEHQHƬWWHG from regular respite visits to both Rachel and Robin House ChildrenVs Hospices for paediatric palliative care. This case study will share the pathway experience that led to Sam receiving the keys to his own tenancy- as opposed to the other option, which was long term adult/older people residential care. Sam has a future he has chosen. His transition 44 was not a simple process but led to a very positive outcome. It involved a childrenVs rights worker, two local authorities, two health boards, two private providers and the Children Hospice Association Scotland from the voluntary sector. Sam participated in a person-centred SODQQLQJPHHWLQJZLWKVWDƪIURP Capability Scotland where he was supported to identify his needs, hopes, dreams and wishes. He was resident in one local authority, came from another local authority area and wanted to live in a third local authority area. During this process he was also required to transfer from paediatric health care to adult health care and move from one health board locality to another. There were numerous looked-after childrenVs reviews and planning meetings in which he received support and encouragement to participate. Those involved included a social worker, who took the lead role, education, advocacy, solicitor (recommended by his advocate), child and family support worker from CHAS, third sector providers, paediatric and adult ventilation service, SamVs brother DQGPRWKHUDFRQVXOWDQWDQGEHQHƬWV advice from his through-care worker. Unfortunately, his accommodation was chosen for him; this was necessary to ensure it met his physical needs. He ZDVYHU\KDSS\ZLWKWKHƮDW+LVVRFLDO worker commissioned services from Sense Scotland to provide the support he needed. Sam did however interview DQGDSSRLQWWKHVWDƪIRUKLVRZQWHDP SamVs transition process took several years. He left school when 16 years old and did not move into his own accommodation until he was approaching his twentieth birthday. Often, Sam did not feel in control of this process. The goalposts moved frequently and he became quite withdrawn and low at times. +HKDVQRZEHHQOLYLQJLQKLVRZQƮDWIRU one year. Small issues still arise for him, however he has grown and developed into an autonomous young man with WKHFRQƬGHQFHWRPDNHFKRLFHVDQG decisions. He is living a full and active life, although like many other young people who have a disability, he can feel socially isolated from his peers at times. Advocacy is important for everyone, and Sam believes that all young people have a right to be represented by an advocate. 45 Scottish Transitions Forum. 2014 This means: r ,QIRUPDWLRQVKRXOGFOHDUO\VWDWH what they are entitled to during the transitions process r ,QIRUPDWLRQVKRXOGVKRZZKDW support is available r ,QIRUPDWLRQVKRXOGEHLQFOXVLYHRI GLƪHUHQWFRPPXQLFDWLRQQHHGV r ,QIRUPDWLRQVKRXOGFRYHUDOODUHDVRI education, health and social care r &RPPRQDQGDJUHHGODQJXDJHVKRXOG be used in the transitions process 46 PRINCIPLES OF GOOD TRANSITIONS. 2 Information should clearly state what they are entitled to during the transitions process Young people, their parents and carers should have access WRLQIRUPDWLRQWKDWFODULƬHVZKDWVXSSRUWWKH\DUHHQWLWOHG to and should expect in the transition period. This should include clear information about their statutory rights, including but not limited to: r 7KH&KLOGUHQDQG<RXQJ3HRSOH6FRWODQG$FW r (GXFDWLRQ$GGLWLRQDO6XSSRUWIRU Learning) (Scotland) Act 2004 r &KLOGUHQoV6FRWODQG$FW r 'XWLHVIRULQIRUPDWLRQXQGHUWKH(TXDOLW\$FW r 1+64XDOLW\,PSURYHPHQW6WUDWHJ\ r %HWWHU+HDOWK%HWWHU&DUH+HDOWK3ROLF\ r $)DLUHUDQG+HDOWKLHU6FRWODQG r 3URWHFWLRQRI9XOQHUDEOH*URXSV6FRWODQG$FW r $GXOWVZLWK,QFDSDFLW\6FRWODQG$FW r *XDUGLDQVKLS r 6RFLDO&DUH6HOI'LUHFWHG6XSSRUW6FRWODQG$FW r +XPDQ5LJKWV$FWDQGLWVDVVRFLDWHGDUWLFOHV r 5LJKWWRDSSHDOYLDWKH$GGLWLRQDO6XSSRUW Needs Tribunal for Scotland r 5LJKWWRFRPSODLQ r 'XWLHVIRU6FRWODQGoV&RPPLVVLRQHUIRU&KLOGUHQ and Young People, as laid out in the Commissioner for Children and Young People (Scotland) Act 2003 and the Children and Young People (Scotland) Act 2014. The &RPPLVVLRQHUoVRƯFHUXQVDQHQTXLULHVVHUYLFH 47 Scottish Transitions Forum. 2014 p,DPDSDUHQWNQRZOHGJHLVSRZHULWJLYHV\RXDQHYHQSOD\LQJƬHOGq The information should be accessible and relevant to carerVs and young peopleVs individual needs, rather than being solely aimed at meeting statute led priorities and legislation (UNCRC article 4). Good sources of information are available. These include Enquire, Autism Tool Box, Moving on Transitions Workbook, English as a second language resources, LEAD Scotland (Linking Education and Disability) and Contact a Family. These resources should be continually developed to their fullest potential. Children, young people, their parents and carers should be made fully aware of the information available to them. The information also needs to take into account the redress that young people, their parents or carers may wish to take if things go wrong. This may be access to a tribunal through education processes, or complaints procedures relating to social care services. There should also be information about the judicial process if these avenues do not produce HƪHFWLYHRXWFRPHV$GYRFDF\VKRXOGEHRƪHUHG to help achieve this. 48 PRINCIPLES OF GOOD TRANSITIONS. 2 Children9s rights and transitions 7UDQVLWLRQVVKRXOGEHƬUPO\URRWHG in childrenVs rights, by placing the child at the centre, recognising them as rights-holders and acting in their best interests while taking their views into account. In Scotland there is a growing awareness of childrenVs rights across public policy, public services and society as a whole. This is indicated by the recent inclusion of a range of duties on Scottish Ministers relating to the United Nations Convention on the Rights of the Child (UNCRC), ZKLFKZDVUDWLƬHGE\WKH8.LQ The principles outlined in TPrinciples of Good Transitions 2V clearly align with the articles contained within the UNCRC, in particular articles: rQRQGLVFULPLQDWLRQ rEHVWLQWHUHVWVRIWKHFKLOG rSURWHFWLRQRIULJKWV rYLHZVRIWKHFKLOG rFKLOGUHQZLWKGLVDELOLWLHV rULJKWWRKHDOWK rUHYLHZRIWUHDWPHQWLQFDUH rDGHTXDWHVWDQGDUGRIOLYLQJ rULJKWWRHGXFDWLRQ rULJKWWRSOD\ Additionally, the United Nations Convention on the Rights of Persons with Disabilities (UNRPD) UHDƯUPVWKDWDOOSHUVRQVZLWK disabilities must enjoy all human rights and fundamental freedoms, DQGLQFOXGHVVSHFLƬFSURWHFWLRQV for the rights of disabled people. Policies, programmes and interventions relating to transitions should be framed around the rights enshrined within these conventions. This means taking a holistic approach to transitions and placing a focus RQULJKWVLQRUGHUWRƬUPO\HVWDEOLVK the principle of best interests of the child. The UNCRC also contains the key concept of Tevolving capacities,V whereby with increasing age, maturity, understanding and experience, children can progressively assume greater autonomy. 49 Scottish Transitions Forum. 2014 _Health care information should support young people from paediatrics into adult health care, for instance, at the time of transfer a young person with additional support needs can receive paper work detailing current diagnosis without any information about adult services. This can be further compounded when there is one area of engagement in paediatrics that WKHQPRYHVWRƬYHRUPRUHLQDGXOWVHUYLFHVq a Nurse RCH Information should show what support is available To enable young people with additional support needs to have control of their lives they should be able to make informed choices about which services they would like to support them. Currently there is no national database or provision of information that would help them. A national resource database should be compiled using open source software such as ALISS.Org. This should be done in partnership with support agencies, local and national government and other statutory services to ensure that all options are included. In Fife, a wide range of organisations and groups help young people make the transition into adulthood. These include Fife Council, NHS Fife, charities and voluntary organisations. To guide their work and ensure a consistent standard of service is provided a TCharter for TransitionV and a website with information to help in the decision-making process have been produced. The four standards set out in the Charter for Transition are: r 7KHVXSSRUWWKH\RXQJSHUVRQ gets meets their particular needs. Parents, carers and the young person, will be involved in 50 deciding what these are. r 3DUHQWVDQGFDUHUVKDYHWKH information they need to make decisions as their son or daughter moves from school and childrenVs services to adult services. r (YHU\RQHZKRoVLQYROYHGLQWKH young personVs care will help plan what will work best for them. r 7KH\RXQJSHUVRQZLOOJHW the right support at the right time as they move from one service to another. A copy of the charter can be downloaded from the Moving On website at ZZZƬIHGLUHFWRUJXNPRYLQJRQ PRINCIPLES OF GOOD TRANSITIONS. 2 _You need to instil in the person a sense of their own achievement and the fact that they can do it. Once somebody starts to write their own job description for a personal assistant the psychological change in them is massive.` Community assets should also EHLGHQWLƬHGDQGPDGHDYDLODEOH Again, ALISS could provide a way of doing this. This information should help the young person and their family to be aware of the full range of options available to them. Local transitions fairs have been held to provide parents with information about services in their local area. Examples of this are the Futures Fair in East Lothian, exploring local options for support post-transition, and TYoung Scots Got TalentV (Values into Action Scotland). Such initiatives should be the norm, not the exception. Information should be inclusive of GLƪHUHQWFRPPXQLFDWLRQQHHGV Information should be provided in ways that are inclusive of young peopleVs, SDUHQWVoDQGFDUHUVoGLƪHUHQWQHHGVVXFK as audio/video, assistive technologies, board maker, talking mats, etc). Information should cover all areas of education, health and social care Information should be developed across disciplines in one easy-to-use IRUPDWUDWKHUWKDQGULYHQE\GLƪHUHQW legislative and policy concerns. Young people, their parents and carers should be able speak to supportive individuals in advocacy or information services about any social and health care concerns that they may have. Advocacy and information providers should consider broadening their scope WRFRYHUDOODUHDVWKDWPD\DƪHFWSHRSOH in transitions, rather than being limited WRDGGUHVVLQJVSHFLƬFDUHDVRIQHHG Common and agreed language should be used in the transitions process $WHUPFDQPHDQGLƪHUHQWWKLQJV depending on who is using it. For example, the terms Tkey workerV, Ttransitions co-ordinatorV, Tlearning GLVDELOLW\onGLVDELOLW\onOHDUQLQJGLƯFXOW\o ToutcomeV, Tpositive destinationV and Tperson-centred planV, amongst many RWKHUVFDQKDYHGLƪHUHQWPHDQLQJV depending on the professional background of the person using it. This leads to confusion amongst children, young people, their parents and carers, and the professionals themselves. Information should, as far as possible, be free from professional jargon. Where it is QHHGHGWKHUHVKRXOGEHFOHDUGHƬQLWLRQV of the terms that are shared and agreed across all professional sectors. 51 Scottish Transitions Forum. 2014 This means: Family well-being needs to be supported Professionals need to be aware of: r Parental support groups, such as VOCAL r Advocacy r Carers assessments r Respite and short Breaks. 52 PRINCIPLES OF GOOD TRANSITIONS. 2 Transition services must address the needs of family members and other carers ZKRVHUROHVZLOODOVREHFKDQJLQJ0DQ\SDUHQWVDQGFDUHUVKDYHKDGWRƬJKWIRU services and support. At the time of transition parents can face Tburn outV as they deal with the challenges of arranging new services, complex assessment procedures and lack of resources. A number of strategies have been developed that recognise the context and impact of stress on families and carers, and the burn out experienced by some. The strategies include: r (QFRXUDJLQJSRVLWLYHH[SHFWDWLRQV and working with doubts around community and social life post-16. Supporting parents to look at how this can be maintained or built upon where it does not already exist r $VVLVWLQJSDUHQWVLQUHFRJQLVLQJWKH importance of their contributions by providing early information sessions at age 14 to help them plan and adjust to changes. If information is timely and accurate, parents and carers will have a chance to acclimatise to the transitions process r 6XSSRUWLQJSDUHQWVVRWKH\XQGHUVWDQG and acknowledge that their young person can make informed choices r ,QFUHDVLQJWKHUROHRIVRFLDO support networks r $GGUHVVLQJSDUHQWFRQFHUQVUHJDUGLQJ the future by accurate and timely information from relevant sources r 7HFKQLTXHVVXFKDVUHOD[DWLRQDQG meditation that can help to deal with the physical symptoms of stress. r 8VLQJDSSURSULDWHVKRUWEUHDNDQG respite services. This can allow for carer respite as well as the young person having a break from their current situation r /RRNLQJDWLPSURYLQJUHVLOLHQFH7KLV can be achieved through practices based on the principles of resilience, VHOIHƯFDF\DQGVHOIHVWHHPEXLOGLQJ r (QVXULQJWKDWSDUHQWVKDYHFRQWLQXHG access to a named person and have their role in the childVs life validated r (QVXUHWKDWSDUHQWVUHFHLYH information and are supported to complete carer assessments and consider other forms of legal processes such as guardianship and incapacity r %HJLQQLQJWRHQFRXUDJHFRQYHUVDWLRQV about transition in clear, simple language at an early stage r 7DONLQJDERXWWUDQVLWLRQLQSRVLWLYH and creative ways and seeing this as a time to celebrate moving into young adulthood. 53 Scottish Transitions Forum. 2014 This means: r 7KHUHVKRXOGEHZRUNDWQDWLRQDOOHYHOWR review how legislation and policy interlink r 7KH6FRWWLVK*RYHUQPHQWVKRXOG SURYLGHLQIRUPDWLRQWKDWFODULƬHVWKH links between legislation and policy 54 There should be work at a national level to review how legislation and policy interlink The current legislation and policy VXUURXQGLQJWUDQVLWLRQVRƪHUVDSRVLWLYH framework to improve young peopleVs experience. However, new initiatives sit on top of older legislation and policy without clarity about how they interlink. Older legislation and policy ZHUHFUHDWHGZKHQWKHUHZHUHGLƪHUHQW social drivers and often do not focus on the right to an independent life. As a result, out-dated work practices and values continue to apply. These stand in the way of young people achieving choice, independence and control. 55 Scottish Transitions Forum. 2014 A team or an individual should be appointed to work between government and other stakeholders to review how current legislation and policy interlink to support clearer transitions pathways, especially between children and families and adult health and social care services. Looking at both of these areas over the transitions period has been outside the scope of any review in recent times and it would help the Scottish Government achieve its 20/20 vision for health and social care. Scottish Government committees should improve their HƪHFWLYHQHVVLQVFUXWLQLVLQJKRZZHOOOHJLVODWLRQDQGSROLF\ are applied in practice. Consideration should be given to the appointment of permanent specialist advisers to the committees. Their roles would be to explore the impact of legislation and policy across all areas, and how outmoded values and work practices can be challenged and improved. 56 PRINCIPLES OF GOOD TRANSITIONS. 2 The Scottish Government should SURYLGHLQIRUPDWLRQWKDWFODULƬHVWKH link between legislation and policy 7KH6FRWWLVK*RYHUQPHQWVKRXOGSURYLGHEULHƬQJVWKDW clearly identify the links throughout the broad legislative and policy environment that impact on transitions. The EULHƬQJVVKRXOGEHVLPSOHWRXQGHUVWDQGLQFOXGLQJE\ those undergoing the transitions process, and relevant WRDOOSURIHVVLRQDOVHFWRUV%ULHƬQJVVKRXOGGHWDLOKRZ health, education, social care and other areas interlink through legislation and policy and clarify the values, principles and recommendations that underpin these. A working group of cross-professionals is already looking at mapping the multi-sector legislative and policy framework in Scotland as it applies to children and adults. More information as this develops will be available on our website. 57 Scottish Transitions Forum. 2014 Principles into practice The following organisations have endorsed TPrinciples of Good Transitions 2V and have committed to putting the principles into practice whenever possible. 58 PRINCIPLES OF GOOD TRANSITIONS. 2 59 Scottish Transitions Forum. 2014 60 PRINCIPLES OF GOOD TRANSITIONS. 2 61 Scottish Transitions Forum. 2014 How to support *Principles of Good Transitions 27 There are lots of ways you can support 2Principles of Good Transitions 28 and the work of the Scottish Transitions Forum: r %HFRPHDPHPEHURIWKH)RUXPLWLVIUHHWRMRLQ at www.scottishtransitions.org.uk r 7DNHSDUWLQ)RUXPPHHWLQJV r $SSO\WKHVHYHQSULQFLSOHVLQ\RXURZQ ZRUNSUDFWLFHZKHQHYHU\RXFDQ/HWXVNQRZ if you would like us to help you do this r 7HOOWKHRWKHUSHRSOH\RXZRUNZLWKDERXWWKH principles and encourage them to apply them r (QFRXUDJH\RXURUJDQLVDWLRQWRMRLQWKRVHZKR KDYHDOUHDG\FRPPLWWHGWRSXWWLQJWKHSULQFLSOHV into practice r /HWXVNQRZDERXWDQ\WKLQJWKDWLV happening in your local area that is helping WRLPSURYHWUDQVLWLRQV:HZRXOGEHYHU\ KDSS\WRKHDUDERXWWKLVDQGWROHWRWKHUV NQRZDERXWLWRQ\RXUEHKDOI r /HWXVNQRZZKDW\RXWKLQNRIWKLVGRFXPHQWDQG help us to write 2Principles of Good Transitions 38. 62 PRINCIPLES OF GOOD TRANSITIONS. 2 However you choose to get involved we would like to hear from you: Scottish Transitions Forum a ARC Scotland Unit 12 Hardengreen Business Centre Eskbank Dalkeith EH22 3NX Email: scott.read@arcuk.org.uk Tel: 0131 663 4444 63 Price: £10 Scottish Transitions Forum 2014