Page 1

Transition to adulthood workbook1. How to use this workbookThis work book forms part of the suite of learning materials that have been developed to support the implementation of part one of the Care Act 2014. These materials summarise and explain the ‘Care and Support Statutory Guidance’ (October 2014) [“the guidance”] and are designed to help those involved in care and support services to understand and implement the Act.

The suite of learning materials contains workbooks, PowerPoint presentations and other material for each of the following topic areas:

1. Introduction and overview 2. Information and advice 3. First contact and identifying needs , including assessment and eligibility, and

independent advocacy4. Charging and financial assessment , including deferred payment agreements5. Person centred care and support planning , including personal budgets, direct

payments and review6. Transition to adulthood 7. Integration, cooperation and partnerships

This workbook is about the transition to adulthood requirements of the Act and its statutory guidance. It has been written for learning facilitators and includes exercises, suggested group discussions, points of reflection and case studies that facilitators can use either in their entirety or to pick and choose from as they see fit when designing a learning programme based on the PowerPoint presentation.

The workbook can also be used by individuals who wish to learn more about this topic area. You can watch the presentation, read the notes below, and undertake the exercises at a pace and time to suit you.

As well as this workbook and PowerPoint presentation, there are also handouts and a shorter overview presentation on this topic area.

The implementation of the Act requires whole systems change and underpinning this is a need for cultural change. These learning materials alone will not affect such change, but they are one tool that can be used to support people along the journey. In many instances, implementing the Act successfully will require those involved in the care and support system to change the way they work i.e. behaviour change. Research suggests that the way people behave is influenced by their knowledge, skills and attitudes:

Page 2

The PowerPoint presentation and handouts are designed to increase knowledge about the Act or guidance. The questions and exercises in the workbook are designed to spark conversations that encourage people to reflect on their own attitudes and the attitudes of others. They aim to give learners the opportunity to discuss the complexities of implementing the changes in practice, and/or provide a safe way of challenging attitudes that go against good practice. The case studies are designed to provide an opportunity for people to analyse and practice their skills.

Key learning pointThese are used in the workbook as a way of highlighting changes that are likely to have a significant impact on practice i.e. the major changes that the Act brings in.

The facilitators’ hints and tips in the workbook signpost facilitators to existing good practice resources on this topic area and/or highlight key changes that are likely to have the most significant impact on practice. The aim is to help facilitators to design interactive learning programmes that are appropriate for their audience.

Facilitator’s hints and tips

To successfully facilitate this module we suggest that you need to:

Knowledge

AttitudesSkills

Behaviour

Page 3

have read the relevant sections of the Act, regulations and guidance

have a good understanding of best practice in this topic area

remember that there are various modules available and you need to choose the most suitable ones for your learning programme

also remember that you can pick and mix questions, exercises and case studies from this workbook or from other topic areas

design your training session in a way that accounts for the learning pyramid so as to maximize the experience and learning outcomes for your participants.

Source: Adapted from National Training Laboratories, Bethel, Maine

2. Who is it for?This workbook is about transition to adulthood. It explores sections 58-66 of the Care Act and chapter 16 of the statutory guidance. It is intended to be used to develop learning programmes for:

Lecture 5%

Reading 10%

Audio visual 20%

Demonstration 30%

Discussion 50%

Practice by doing 75%

Teach others 90%

Passive teaching methods

Average retention rates

Participatory teaching methods

Page 4

practitioners directly involved in the planning and support of young people, including those with special educational needs (SEN) and complex needs, who will transition to adult care and support, and their carers

specialist information and advice workers managers of both the above types of roles managers and commissioners in local authorities with a responsibility for the

provision and market development of services for young people who will transition to adult care and support, and their carers.

3. ContentsThe workbook starts with an overview, which summarises the topic area, and identifies relevant key words. It then contains the following sections that match the slides in the PowerPoint presentation

Introduction Children and Families Act 2014 and SEN reform Care Act: transition assessment Identifying young people and young carers Issues of capacity and consent Cooperating with professionals and organisations Summary

Appendices: links to key resources; handouts

Page 5

4. OverviewTransition is an essential part of human life and experience. Here the term is used to refer to the process of change for young people, and those around them, as they progress from childhood to adulthood. This movement can be a time of celebration, change and also challenge for all young people. It is a time when they are considering and making decisions about their continuing education, work and careers, their social life and where and how they will live.

The vital importance of a successful transition to adulthood for young people has long been recognised in government policy publications and guidance. There is now a considerable body of evidence to suggest that too many young people entering adult services are at greater risk of marginalisation and poorer outcomes as a result of the transition process and its conclusion. Local authorities need to have in place arrangements to ensure that young people with complex needs have every opportunity to lead as independent a life as possible and are not disadvantaged by the move from children’s to adult services.

Challenges here combine organisational and attitudinal issues. For example, the process can be managed very badly and transition to adult services has been described as being like ‘falling off a cliff’. There is no reason in law why this should be the case; the fundamental duties, for example for disabled young people as adults, remain to assess their needs and provide services to meet these needs. Some of the obstacles that young people in transition and adults face are also rooted in their own lack of expectation and aspiration about their adult lives, often as a result of negative messages from those around them or simply a lack of understanding.

Alongside the availability of appropriate provision, a successful transition to adulthood depends on early and effective planning, putting the young person at the centre of the process to help them prepare for transfer to adult services. The process of transition should start while the young person is still in contact with children’s services and may, subject to the needs of the young person, continue for a number of years before and after the transfer to adult services. There needs to be an overall focus on outcomes and activities rather than services.

The Care Act and related reforms aims to underpin and promote the extension of best practice in transition arrangements. The Care Act introduces new entitlements to transition assessment for young people, young carers and carers of young people and looks to underpin continuity in provision until adult services have a plan in place. At the same time, changes introduced by the Children and Families Act 2014 and special educational needs (SEN) reform introduce a system of support extending

Page 6

from birth to twenty-five years of age. This means there will be a group of young people who will be entitled to support through both pieces of legislation.

5. Key wordsThe suite of learning materials contains a glossary of key words referred to in the statutory guidance. The following key words, definitions of which can be found in the glossary, are relevant to this topic area: abuse, advocacy, appropriate individual, carer, education health and care plan, lead professional, pathway planning, person-centred approach, personal budget, preventative, safeguarding, significant benefit, substantial difficulty, transition assessment, transition plan, wellbeing.

6. Introduction

Slide 1

Notes1. This presentation forms part of the suite of learning materials that have been

developed to support the implementation of part one of the Care Act 2014. These materials summarise and explain the ‘Care and Support Statutory Guidance’ (June 2014) and are designed to help those involved in care and support services to understand and implement the Act.

2. This presentation is about transition to adulthood. It is intended for: practitioners directly involved in the planning and support of young people,

including those with special educational needs (SEN) and complex needs, who will transition to adult care and support, and their carers

specialist information and advice workers managers of both the above types of roles managers and commissioners in local authorities with a responsibility for the

provision and market development of services for young people who will transition to adult care and support, and their carers.

Page 7

3. The aim of the presentation is to help you reflect on the implications of the Act for your role, so that you will know what you must do differently and what you may need to do differently.

Slide 2

Slide 3

Notes1. Transition is an essential part of human life and experience. Young people (and

their parents) use the term to refer to the process of change for young people as they progress from childhood to adulthood. This movement can be a time of celebration, change and also challenge for all young people. It is a time when they are considering and making decisions about their continuing education, work and careers, their social life and where and how they will live. Transition is an emotional as well as a practical experience.

2. Transition to adulthood happens at different ages for all young people, including those with complex needs or disabilities. Transition isn’t defined in the Care Act or statutory guidance. Definitions of transitions from a service transfer point of view include: “…the transfer to an adult environment where they [young people] may need

to consult several different health teams, therapy teams, and adult social care services” (CQC 2014)

Page 8

“the planned, purposeful movement of adolescents and young adults from child-centred to adult-orientated health care systems as distinct from a single chronological even” (RCN 2014 after Blum 1993)

“the point at which young people move from children’s to adult services” (‘Don’t let me down’ 2012)

“for many working with disabled young people and their families transition is understood as the time disabled young people move from children’s to adult services, rather than a natural stage of life that includes leaving school, starting work, going to college or university, leaving home, trying out new experiences and making new friends” (Cowen 2010).

3. The examples here are drawn from the relevant literature and point variously to a planned process, point in time or natural stage. What is common to all four is the expectation of change.

Questions What does transition mean to you? What key words do you or your

organisation use to describe transition? Can you give an example of a model or framework that you use/have used to

make sense of a transition experience? Reflecting on the quote from Cowen above, does Cowen have a point?

Facilitator’s hints and tipsThis opening sequence of introductory slides provides an overview of the evidence concerned with the organisation and practice of transition. Most of the findings will probably be familiar, but are likely to be helpful in articulating the local context within which the Care Act and special educational needs (SEN) reform will need to embed.

Given the diversity of service and organisational arrangements designed to support transitions working, it is likely that the mix of experiences (including achievements, issues and challenges) will vary from locality to locality. It will probably be helpful to try and distil these - and their implications - for the local area/s covered by your learning programme and check these against the ‘what works?’ material on slide 7.

Page 9

Slide 4

Notes1. There is considerable evidence to point to the importance of the transition

experience in terms of immediate and longer-term life outcomes.

2. Transition is a time of risk. Poor transition is likely to be a key contributor to poor outcomes: harm can be done through poor transition as evidenced in the number of care leavers in adult prisons and in mental health services, the deaths of young adults with learning disabilities from hate crime, and suicides of young adults. Young people who are already vulnerable in terms of complexity of needs and/or circumstances are at greater risk of marginalisation during the transition process.

3. The importance of transition quoted in research includes: moving into adulthood is one of the most far reaching and complex transitions

for anyone but young people with learning difficulties face additional challenges including transfer from children’s to adult health and social services (Heslop et al 2002)

the interface between children’s and adult health services is becoming an increasingly important issue as more children and young people with conditions formerly often lethal in early childhood are now surviving into adulthood (Transition: getting it right for young people 2006)

research shows that we can set young people up for the rest of their lives and make a huge difference to their life chance outcomes if we share with them a range of choices, good information and support around housing, employment, health, and making friends and social relationships, while they are still at school. (Getting a Life, 2011).

4. The last bullet point, from Getting a Life, illustrates the vital importance of a

Page 10

successful transition to adulthood for disabled young people, which has long been recognised in government policy publications and guidance. Local authorities need to have in place arrangements to ensure that young people with complex needs have every opportunity to lead as independent a life as possible and are not disadvantaged by the move from children’s to adult services.

Questions What are the characteristics common to all transitions to adulthood? From your practice experience, what seems to be the most critical aspect of

the transition experience for: the young person; their family?

Slide 5

Notes1. The first quote above is from ‘Young people with life-limiting conditions: transition

to adulthood’ by Sheila Marsh et al in Public Service Works March 2011.

2. Transition to adulthood has been described as “entering into a black hole”, like “falling off a cliff”, or “a time when young people have few options, become more isolated and families experience a drop in levels of support’” (Report of the Parliamentary Hearings on Services for Disabled Children (2006) and a "nightmare” (Commission for Social Care Inspection (2007) Growing up matters: better transition planning for young people with complex needs).

Page 11

3. Self-assessment evidence from Transition Support Programme 2008-11 did recognise some improvement but still concluded that experiences of transition to adulthood for many individual young people remain unacceptable.

Questions What do you know about the local experience of transition for young people,

families and carers? How does it compare to national messages/reports such as these? Are there recurring themes, or have the messages changed? Are there young people and carers you don’t hear from? How do you celebrate successful change and rites of passage?

Slide 6

Notes1. Confusing isn’t it? You probably can’t read this slide or make out quite what’s

going on (a parable perhaps?). In the report ‘From the Pond into the Sea’ Professor Steve Field, Chief Inspector of Primary Medical Services and Integrated Care said “We have put the interests of a system that is no longer fit for purpose above the interests of the people it is supposed to serve” (CQC 2014).

2. Research, guidance and policy point to a number of problems in achieving a coordinated approach to transition. These include: poor multi-agency working

Page 12

absence of a holistic approach to understanding individual and family needs lack of information for young people and parents insufficient attention to the concerns/priorities of the young person

lack of appropriate services/provision onto which young people can transfer statutory planning by itself does not lead to the life outcomes that many young

people want.

3. Challenges here combine organisational and attitudinal issues. There is no reason in law why this should be the case; the fundamental duties, for example for disabled young people as adults, remain to assess their needs and provide services to meet these needs. Some of the obstacles that young people in transition and adults face are also rooted in their own lack of expectation and aspiration about their adult lives, often as a result of negative messages from those around them or simply a lack of understanding.

4. The key aim of the Care Act, in relation to transition, is for this to be a seamless process for young people and their families, and one which results in young people entering adulthood being better set up for life.

Questions Do you recognise any or all of the factors (note 2 above) within your own

locality? Which ones have been positively addressed? Do your local arrangements help or hinder your locality to have seamless

transition to adulthood?

Slide 7

Page 13

Notes1. This list of principles and processes has been derived from a review of the

transitions literature (see for example Merriman S, 2009, TransMap for a concise discussion of key principles). The key principles all appear within the legislation and/or accompanying guidance covering Transitions as well as SEND reform.

2. ‘What works’ about transition is not set, but rather is a combination of individual and organisational factors. The starting point is attitudinal as statutory planning by itself does not lead to the life outcomes that many young people want (Valuing People Now 2010). In short, transition should not been seen as a means by which an individual is moved from one service to another. Rather it should be seen as a way to enable and support a young person to move towards a new stage in their life.

3. Alongside the availability of appropriate provision, a successful transition to adulthood depends on early and effective planning, putting the young person at the centre of the process to help them prepare for transfer to adult services. The process of transition should start while the young person is still in contact with children’s services and may, subject to the needs of the young person, continue for a number of years after the transfer to adult services. There needs to be an overall focus on outcomes and activities rather than services.

Page 14

ExerciseComplete the transition to adulthood audit tool for your local service. The tool is an adaptation of the Think Local Act Personal resource ‘Making it Real’. This utilised a number of "I" statements developed by people who use services, carers and citizens to describe the sort of feelings and experiences that people want from care and support services. The statements in the audit tool act as a benchmark for effective assessment, planning and impact of local transitions arrangements for children, young people, carers and families. Consider each statement in turn – give each statement a mark out of 5, where 5 = strongly agree with the statement and 0 = strongly disagree – and justify your mark in the right hand column. Once completed, you can use this information to develop your action plan at the end of the workbook.

Page 15

7. Children and Families Act 2014 and SEN reform

Slide 8

Notes1. Key points, relevant to transitions, from the Children and Families Act 2014 are

set out in this and the next slide – as outlined in the SEN Code of Practice.

2. The new 0-25 special educational needs and disability (SEND) system provides additional protections to young people in further education. From age 0-25 and across all services this provides a huge opportunity to embed person-centred practice, to develop life span pathways and to consolidate good practice in transition. The Department for Education’s vision for the SEND reforms are that they will implement a new approach which seeks to join up help across education, health and care, from birth to 25. Help should be offered at the earliest possible point, with children and young people with SEND and their parents or carers fully involved in decisions about support and what they want to achieve.

3. The focus is on ensuring children and young people are at the heart of decision making (about their own lives and support and they services and communities work locally).

4. From 16 the ‘right to make decisions and requests’ applies to young people aged 16 people and over (the end of the academic year in which they turn 16). We need to ensure that young people are prepared for decision making from a younger age, that we have a good knowledge of the Mental Capacity Act, and know how to support people to make choices with good supported decision making.

Key learning pointThe Care Act 2014 and Children and Families Act 2014 provide a single legislative framework for transition to adulthood.

Page 16

Slide 9

Notes1. New education, health and care plans (EHC) must be person-centred, outcome

focused and from aged14 + must focus on Preparing for Adulthood outcomes (see slide 10).

2. Personal budgets for young people could be SEN personal budget and/or personal health budget or social care personal budget. Young people have the right to request a (SEN/education) personal budget as part of the EHC process.

3. The Children and Families Act instills new rights to assessment and support for young carers and parent carers – similar to the requirements under the Care Act.

4. The Children and Families Act 2014 requires local authorities to publish a local offer, which includes provision of information and advice for children’s social care in their local area, including specific requirements for young people who are preparing for adulthood. Local offers must be developed with young people and their families, must state how they support young people to move into adulthood with employment, independent living, community participation (friends and relationships) and good health. It should include how to support young people to make decisions about their own support and local services.

5. The Children and Families Act applies to children and young people aged 0 – 25 which means this also includes integration of children’s and adults’services.

Page 17

Facilitator’s hints and tipsThere are a variety of implications and challenges that emerge for individual workers and teams from the implementation of these two important pieces of legislation. This list could serve as a prompt for further discussion.

Understanding and embracing a new impetus at improving transition Developing a good awareness of the issues involved before, after and during

the experience of transition A commitment to more personalised ways of working Finding out what others do and why Challenge to systems and processes that don’t work well The reconfiguration of some services

Slide 10

Notes1. All of the SEN reforms are intended to help young people transition to adulthood

with better outcomes. Preparing for adulthood is referred to throughout the reforms as employment, independent living and community participation and is expanded on in the Code of Practice. To prepare for adulthood, young people must have high aspirations for a full adult life with the following outcomes: higher education and/or employment independent living – choice and control over lives and support with good

housing options and support participating in society – friends, relationships and participating in and

contributing to the local community being as healthy as possible (health and wellbeing).

2. The national Preparing for Adulthood programme (PfA) was commissioned by the Department for Education to support the SEN reforms and has been delivered by the national Development Team for Inclusion (NDTi) and the Council for Disabled Children (CDC).

Page 18

3. PfA has developed five key messages through their work with SEND pathfinders: develop a shared vision of improving life chances with young people, families

and all key partners raise aspirations for a fulfilling adult life by sharing clear information about

what has already worked for others develop a personalised approach to all aspects of support using person-

centred practices, personal budgets and building strong communities develop post 16 options and support that lead to employment, independent

living, good health, friends, relationships and community inclusion develop outcome-focussed multi-agency commissioning strategies that are

informed by the voice of young people and families.

Slide 11

Notes1. Good transition planning starts before the young person is 14. This includes

raising aspirations and supporting children to make decisions.

2. For young people with special educational needs who have an Education, Health and Care (EHC) plan under the Children and Families Act, preparation for adulthood must begin from year 9. EHC plans must be person-centred, outcome focused and from aged14+ must focus on preparing for adulthood outcomes.

3. Coordinated multi agency support is required to enable young people to achieve good life outcomes. This includes providing information, advice and support on preparing for adulthood, what adult social care is, transition assessments, and what support they can expect. Year 9 review should trigger this. Preparing for adulthood annual reviews should focus on planning support for SEN, health and care needs and building on what has already been achieved.

4. The transition assessment should be undertaken as part of one of the annual statutory reviews of the EHC plan, and should inform a plan for the transition from children’s to adult care and support – see next slide for transition assessments.

Page 19

5. Local authorities may continue EHC plans until the end of the academic year during which the young person turns 25. As the young person is nearing the end of their time in formal education, and the plan is likely be ceased in the next year, the PfA review should ensure good exit planning and ensure the necessary support is in place to build on the outcomes and make a smooth transition into adulthood life. Before ceasing the plan the authority must consider whether education/training outcomes have been achieved.

Key learning pointFor young people with special educational needs (SEN) who have an Education, Health and Care (EHC) plan under the Children and Families Act, preparation for adulthood must begin from year 9.

Facilitator’s hints and tipsFor young people and their families and carers to have a good experience of transition and achieve desired outcomes there needs to be an effective transition pathway that all relevant agencies adhere to. The Special Education Needs and Disability Pathfinder Programme Evaluation identified a common EHC planning pathway. The common pathway can be found on page 9. It might be useful to ask participants to compare this with their current transition pathway and:

discuss whether they have a similar pathway for EHC plans how does it map on to any transition pathway adult services currently use? discuss the strengths and weaknesses of their current pathway(s)

Think about how their current pathway(s) may need to change to ensure young people, their families and carers have a good experience, achieve desired outcomes and children and adult services work together.

8. Care Act: transition assessment

Slide 12

Page 20

Notes1. The emphasis of the Care Act reflects established best practice in relation to

preparation for adulthood and joint working between local authorities' adult and children's services departments. Duties in both Acts are on the local authority, not children’s or adult’s services, so various operating models around transitions are possible. Both have a focus on personalised, outcome-based approaches, and a new focus on carers as families transition rather than just the young person.

2. A key provision of the Act is the duty to carry out a transition assessment for these 3 groups of people in order to help them plan if they are likely to have needs once they (or the child they care for) turn 18: young people, under 18, with care and support needs who are approaching

transition to adulthood young carers, under 18, who are themselves preparing for adulthood adult carers of a young person who is preparing for adulthood.

3. In addition, the Act gives local authorities powers to ensure continuity so that where a young person is receiving children's services those services will not stop abruptly when the person turns 18, but must continue until adult services have a plan in place (more on slide 20). The ability to continue children’s services beyond 18, and to join up various assessments across both Acts, should mean a more flexible framework where transition can be a personalised evolution from 14-25.

4. Note that SCIE are developing new resources about transition from childhood to adulthood and the Care Act, including guidance on supporting both adult carers and young carers through transition to adulthood.

Page 21

Slide 13

Notes1. The guidance uses the phrase “young person or carer” to refer to young people,

adult carers and young carers.

2. ‘Likely to have needs’. This is highly likely to include young people and carers who are in receipt of children’s services but not exclusively so. Local authorities must carry out a transition assessment of anyone within the three groups where there are likely needs for care and support after turning 18 and when there is significant benefit to the young person and carer in doing so.

3. ‘Significant benefit’ is not related to the level of a young person or carer’s needs, but rather to the timing of the transition assessment (16.10). This will be informed by one or a number of circumstances e.g. upcoming exams, wishes in terms of entering college or work, whether the young person is planning to move out of the family home, planned medical treatment and so on. Every young person and their family are different, and as such, transition assessments should take place when it is most appropriate for them.

Key learning pointThe local authority must carry out a transition assessment for a young person or carer when there is significant benefit to them in doing so, and if they are likely to have needs for care or support after turning 18.

4. The local authority may refuse to undertake an assessment if it thinks the “significant benefit” condition is not met. In these circumstances, it must provide its reasons for this in writing in a timely manner, and it must provide information and advice on what can be done to prevent or delay the development of needs for support.

Page 22

5. Where the local authority judges that a young person or carer is likely to have needs for care and support after turning 18, but that it is not yet of significant benefit to carry out a transition assessment, the local authority should consider indicating (when providing its written reasons for refusing the assessment) when it believes the assessment will be of significant benefit.

6. Transition assessments can in themselves be of benefit in providing solutions that do not necessarily involve the provision of services, and which may aid planning that helps to prevent, reduce or delay the development of needs for care and support.

Key learning pointTransition assessments can in themselves be of benefit in preventing, reducing or delaying the development of needs for care and support.

Case studyIsabelle is 15 years old and has complex needs. She attends a residential school on a 38- week basis funded by education and social services. Care and support is currently required on the weekends and in holidays and can continue until she is 19. Isabelle’s parents have approached the local authority requesting at transition assessment around the time of her 16th birthday.

When Isabelle leaves school at 19 it will not be appropriate for her to live with her parents and she will require substantial supported living support and a college placement. Due to the nature of Isabelle’s needs, she will need a lengthy transition in order to get used to new staff, a new environment and a new educational setting. The college has indicated that that they will need up to a year to plan for her start.

Questions Do you think that an assessment at age 16 would be of “significant benefit” to

Isabelle, and if so why? Is an assessment at age 16 too soon to be of ‘significant benefit’ to Isabelle?

If so, what would be your reasons for delaying the assessment?

Suggested answersIt seems likely that there would be a significant benefit for the transition assessment to take place around the age of 16. This would look at both the funding for support from age 18 – 19 and the longer-term options. Once the assessment has identified the support Isabelle will likely be entitled to on leaving school, the planning process can begin and suitable support can be put in place by the time she leaves school.

Page 23

If a transition assessment were to take place later, the local authority would be at risk of not promoting wellbeing in the areas of family relationships (because Isabelle could temporarily need to live with her parents while solutions are found at the last minute, which would not be appropriate) and control over day-to-day life (because Isabelle would very likely not have the same range of choices if planning and preparation were to be truncated).

Facilitator’s hints and tipsIt is important that there is consistent good practice in relation to transition assessment undertaken for those with special education needs (SEN) at the age of 14 as part of the annual statutory review of the EHC plan. For those who are not known to children’s services or who do not have an EHC plan, good, early planning for adulthood rarely happens. Good practice guidance states the usefulness of early conversations with local authorities and suggests that local authorities should consider extending the use of the statutory pathway planning process for all young people ‘likely to have needs’ rather than just those with SEN.

It might be useful to ask participants to reflect on: the degree to which they are currently undertaking transition assessments at

the age of 14 for young people with SEN the degree to which they are currently undertaking transition assessments at

the age of 14 for young people and carers ‘likely to have needs’

It will be important to help participants consider the challenges associated with this and particularly how they might deal with the significant back log of cases they may experience if it is not something they have been doing up to now.

Slide 14

Notes

Page 24

1. The focus on this slide is on key ‘musts’ for the local authority (from the guidance). The guidance confirms that the same requirements and principles apply for carrying out transition assessments as for other needs assessments under the adult statute. These are variously set out in section 6. For example, local authorities must undertake an assessment for any adult with an appearance of need for care and support (6.13) and where it considers there will be significant benefit to the individual of doing so regardless of any eligibility issues. See the learning module on assessment and eligibility for more details.

2. The process itself must be person-centred. The young person or carer in question (or others they wish to be involved) must be involved in the assessment for it to be person centred and to reflect their views and wishes.

3. The guidance recognises that individuals may need additional information and advice to engage in the assessment process in a meaningful way. So, for instance, a young carer conducting a supported self-assessment needs to be clear about the support available both to them and the person(s) they care for. More complex issues may require more intensive and more personalised information and advice, helping people to understand the choices available to them.

4. The process itself must be appropriate and proportionate to the complexity of the person’s needs. These are both understood to be intrinsic to good quality assessment practice.

5. All transition assessments must include consideration of the current needs for care and support and how these impact on wellbeing. They must establish whether the young person or carer is likely to have needs for care and support after the young person in question becomes 18 and, if so, what those needs are likely to be, and which are likely to be eligible needs.

6. Transition assessments must also establish the outcomes the young person or carer wishes to achieve in day-to-day life and how care and support (and other matters) can contribute to achieving them.

Key learning pointThe guidance confirms that the same requirements and principles apply for carrying out transition assessments as for other assessments under the adult statute.

Page 25

ExerciseThinking about the terms appropriate and proportionate, describe the kinds of factors that might make supported self-assessment by a young person appropriate. In addition, in what circumstances might a ‘light-touch’ assessment be proportionate?

Suggested answerA supported self-assessment might be appropriate for a 17 year old young carer who wishes to go to University for instance. The caveat is that the local authority would need to ensure that the young person fully understood the support available to them and the person they care for.

EHC plans must be person centred and focus on preparing for adulthood from Year 9. The transition assessment should build on these plans which will already contain much of the information required and hence a ‘light touch’ assessment might be appropriate here.

Facilitator’s hints and tipsAs with the other workbook topics the changes needed in implementing the Care Act include the need for cultural change. One way of testing the culture of current practice with your participants is to ask them to reflect on the degree to which transition assessment is currently.

Person centred throughout and identifies: the total extent of current needs and their impact the likelihood of future needs the strengths and capabilities of the person in question the outcomes, views and wishes that matter to the child or carer in

question A collaborative process The assessment process is adapted to an individual’s communication needs

and enables and supports co-production Supports preparation by providing the questions to be covered by

assessment in advance and in an accessible format Provides specialist interpreters where required to enable communication and

engagement in assessment A choice of assessment options including for example, face to face,

supported self-assessment, an outline or phone assessment, a combined assessment.

Page 26

Slide 15

Notes1. The focus on this slide is on key ‘shoulds’ for the local authority identified within

the statutory guidance. The transition assessment should: take place at the right time for the young person or carer be proportionate to need build on existing information (including an EHC plan if there is one) consider the immediate short-term outcomes that a child or carer wants to

achieve as well as the medium and longer-term aspirations for their life be carried out within a reasonable timescale support the young person and their family to plan for the future providing them

with information about what they can expect, be coordinated by a lead or designated person, and involve all relevant partners. The aim here is for the assessment to inform a person-centred transition plan.

2. In addition, assessment and planning processes can be combined where appropriate, provided the people involved agree. For example a transition assessment can be combined with a review or re-assessment by children’s services. NB For children with an EHC assessment there is a clear expectation of combination unless specific circumstances prevent it.

ExampleIf an external organisation (such as a hospital) is carrying out an assessment of the individual or a relevant person, for example, the individual’s carer or someone the individual cares for, around the same time as the local authority’s assessment, the local authority can carry out that assessment jointly with the other organisation or on behalf of the other organisation.

Page 27

Facilitator’s hints and tipsAchieving outcomes is one of the underlying principles of both the Care Act and the Children and Families Act. It might be useful to explore with participants the following questions:

How are outcomes currently developed and monitored? What measures and indicators are routinely used? How does your agency use the information it gathers on outcomes? What changes might need to be made by your service/agency to ensure

more reliable reporting of the three timeframes identified within the guidance?

9. Identifying young people and carers

Slide 16

Notes1. Identifying children not known to the local authority might include, for example,

young people with degenerative conditions or with mental health problems who have not required children’s services but whose needs increase as they approach adulthood.

2. The guidance also makes reference to: young people (for example with autism) whose needs have been largely met

by their educational institution, but who once they leave, will require their needs to be met in some other way

young people detained in the youth justice system who will move to the adult custodial estate

young carers whose parents have needs below the local authority’s eligibility threshold but may nevertheless require advice or support to fulfil their potential, for example a child with deaf parents who is undertaking communication support.

Page 28

Key learning pointLocal authorities should consider how they can identify young people who are not receiving children’s services but who are likely to have care and support needs as an adult.

Questions Are there other circumstances or categories of need that might be relevant

here? What current mechanisms do the local authority and its partners (e.g. local

educational institutions and health services) have in place to identify these individuals and/or groups?

How effective are these mechanisms in supporting early identification and/or preventing the development of care and support needs?

What are some specific examples of how they need to be improved? What might be the demand implications of more robust mechanisms?

Slide 17

Notes1. The SEN code of practice sets out the importance of full-time programmes for

young people aged 16 and over. Local authorities must consider the impact on other members of the family of the person receiving care and support. For

Page 29

example, caring responsibilities could have an impact on siblings’ school work, or their aspirations to go to University.

2. Transition assessments for young carers or adult carers must also specifically consider whether the carer: is able to care now and after the child in question turns 18 is willing to care now and will continue to after 18 works or wishes to do so is or wishes to participate in education, training or recreation (16.25).

3. The power to join up assessments applies so, for example, if an adult is caring for a 17 year old in transition and a 12 year old, the local authority could combine: the transition assessment of the 17 year old under the Care Act any assessment of the 17 year old’s needs under section 17 of the Children

Act any assessment of the 12 year old’s needs under section 17 of the Children

Act the carer’s assessment of the adult under the Care Act the parent carer assessment of the adult under the Children and Families Act

4. A local authority can meet an adult carer’s needs identified through a transition assessment before the child turns 18, having regard to what support they are receiving under children’s legislation. If the local authority decides to meet the adult carer’s needs through adult services, as for anyone else under the adult legislation, the adult carer must receive a support plan and a personal budget if their needs are eligible. However, it may not meet an adult carer’s needs for support under the Care Act by providing care and support to the child cared for – this will always happen under children’s legislation.

Key learning pointTransition assessments for young carers or adult carers must specifically consider whether the carer:

is able to care now and after the child in question turns 18 is willing to care now and will continue to after 18 works or wishes to do so is or wishes to participate in education, training or recreation.

Page 30

Facilitator’s hints and tipsThe culture in children’s services has been to take into account the needs of the disabled young person alongside parent carers and other family members. Anecdotally, transition to adult services has focused on the young adult and the support they require, which may leave parent carers and other family members experiencing a lack of support in meeting their own needs. The Care Act places emphasis on the need for local authorities to assess the needs of parent carers and to meet any eligible needs they may have and to provide personalised information and advice in relation to any needs that are not eligible.

In practical terms, the support carers require will differ but could include support to allow them to continue: to work; to meet the needs of their other children; to engage in social activities; and to meet their own health needs. Below is an example of the types of things carers want taken from ‘Making it Real for Carers’ – what do carers want?

Clear, consistent, coordinated information that is easy to access, and information giving to be a two-way process, where their voice is heard.

The space to be someone other than a carer and to engage in activities in their community.

Services that talk to each other and are coordinated. Care workers they can trust and who are appropriately skilled for the

particular needs of the person they support. They also want access to a good range of support services.

To know there is help available if things go wrong and that they can access the support they need to get on with their lives without worrying.

To be sure that the money available for support can be used in ways that work well for the person they care for and for the whole family. They want good value, safe and high quality support to be available.

It might be useful to ask participants to discuss: What are the key challenges faced by adult services in supporting parent

carers to meet their needs when they transition to adult services? In what ways might a strengths-based approach to assessment, co-

production and person centred support planning help to address these challenges?

Page 31

10. Issues of consent and capacity

Slide 18

Notes1. A young person or carer, or someone acting on their behalf, has the right to

request a transition assessment. The Act does not say that the child or young person has to be a certain age to be able to ask for an assessment.

2. In all cases, the young person or carer in question must agree to the assessment where they have mental capacity and are competent to agree.

3. Everyone has the right to refuse a transition assessment and the local authority is not required to carry out assessment where a person refuses one, but this can be overridden where they: lack capacity to take that decision and an assessment would be in their best

interests. Where there is a lack of capacity the local authority must be satisfied that an assessment is in their (young person or carer) best interests

are experiencing, or at risk of experiencing, any abuse or neglect.

4. Under the Mental Capacity Act (MCA) 2005 the issue of capacity is decision-specific; this means that the test of someone’s capacity can only be made in relation to a particular decision that needs to be made at a particular time. This is an important safeguard against blanket assessments of someone’s ability to make decisions based on their disability or condition. It also recognises the fact that someone may be able to make some decisions but not others. The underlying belief of the MCA is to ensure that those who lack capacity are supported to make as many decisions for themselves as possible, and that any decision made or action taken on their behalf, is done so in their best interests. This is a necessity if the transition assessment is to be person-centred. Where a young person or carer lacks capacity to agree, the local authority must be satisfied that an assessment is in their best interests and the assessor must actively apply the provisions of the MCA, particularly the five principles of the MCA .

Page 32

5. There is a test of ‘Gillick competence’ for children below the age of 16. The 1982 ruling and subsequent decision by the Law Lords in 1985 determined that "...whether or not a child is capable of giving the necessary consent will depend on the child’s maturity and understanding and the nature of the consent required. The child must be capable of making a reasonable assessment of the advantages and disadvantages of the treatment proposed, so the consent, if given, can be properly and fairly described as true consent…. it is not enough that [the child] should understand the nature of the advice which is being given: [the child] must also have a sufficient maturity to understand what is involved."

6. Where this test isn’t met a person with parental responsibility or an independent advocate will need to be involved in the transition assessment.

7. Local authorities have a duty to provide independent advocacy where the person would experience substantial difficulty in being involved in the assessment process and there is no ‘appropriate individual’ to facilitate their involvement. This duty applies regardless of whether they lack mental capacity as defined under the MCA. For more information see the independent advocacy workbook.

11. Cooperating with professionals and organisations

Slide 19

Notes1. Who is involved? Professionals from different agencies, families, friends and the

wider community should work together in a coordinated manner around each young person or carer to help raise their aspirations and achieve the outcomes that matter to them (16.4).

2. Avoiding duplication of effort. The SEN Code of Practice highlights the importance of the ‘tell us once’ approach to gathering information for assessments.

Page 33

3. The scope of cooperation. The Care Act sets out five aims of co-operation between partners which are relevant to care and support…One of these is concerned specifically with smoothing the transition from children’s to adults’ services. The guidance states that “co-operation between partners should be a general principle for all those concerned, and all should understand the reasons why cooperation is important for those people involved. (15.16). In addition to external partners, the guidance also makes clear that, in additional ensuring cooperation between the local authority and its external partners, there is internal cooperation between the different local authority officers and professionals who provide these services” (15.23).

4. Relevant partners. The Act specifies the “relevant partners” who have a reciprocal responsibility to co-operate, which are: other local authorities within the area (i.e. in multi-tier authority areas, this will

be a district council) any other local authority which would be appropriate to co-operate with in a

particular set of circumstances (for example, another authority which is arranging care for a person in the home area)

NHS bodies in the authority’s area (including the primary care, CCGs, any hospital trusts and NHS England, where it commissions health care locally)

local offices of the Department for Work and Pensions (such as Job Centre Plus)

police services in the local authority areas prisons and probation services in the local area.

5. Key-working. Often there is a natural lead professional involved in a young person’s care who fulfils this role and local authorities should consider formalising this by designating a named person to coordinate transition assessment and planning across different agencies. This coordinating role – sometimes referred to as a ‘key working’ or ‘care coordination’ can not only help to deliver person-centred, integrated care, but can also help to reduce bureaucracy and duplication for local authorities, the NHS and other agencies. Care leavers will have personal advisers to provide support, for example by providing advice or signposting the young person to services. The Personal Adviser will be a natural lead in many cases to coordinate a transition from children’s to adult care and support where relevant.

Key learning pointThere is an explicit requirement that children and adult services must cooperate for the purposes of transition to adult care and support.

Page 34

Questions What is your understanding of your agency’s responsibilities, including

funding arrangements, for young people and carers who are moving from children’s to adult services?

Are there duplications of effort and/or gaps with other agencies? How do you work together to map activity? What plans have you to work with young people and families to map and

improve the way things work between agencies?

Facilitator’s hints and tipsA number of the more strategic issues are usefully rehearsed in Local Government Association (2013) Must know on adult social care 10. Transitions . The guidance also makes reference to implications for commissioning activity which will result from getting a good operational fit between the Care Act and Children and Family Act e.g. via the integration of services and the coherent delivery of information and advice via Local Offers. Some of the things that will need to be considered include:

There are organisational and cultural differences between services that need to be overcome. Local authorities do need to build a picture of the services that people will need over the course of their lives.

Ensure you have appropriate and clear transition arrangements. These include transition between services or systems not directly under the council’s or health and wellbeing board’s control.

Make sure that the views of children, young people and families are listened to.

Develop relationships with key partners to ensure there is a range of learning, work and leisure opportunities and to meet local need.

Ensure that your organisation has ways of measuring outcomes for young people at the transition stage and that these are used in commissioning for choice and improvement of services.

Encourage an integrated approach to personal budgets and budget holding to support transitions from children’s to adults’ services.

Page 35

Slide 20

Notes1. Receiving services under children’s legislation refers specifically to section 17 of

the Children Act 1989 or section 2 of the Sick and Disabled Persons Act 1970 or section 2 of the Carers and Disabled Children Act 2000.

2. The ‘relevant steps’ are if the local authority: concludes that the person does not have needs for adult care and support; or concludes that the person does have such needs and begins to meet some or

all of them (the local authority will not always meet all of a person’s needs – certain needs are sometimes met by carers or other organisations); or

concludes that the person does have such needs but decides they are not going to meet any of those needs (for instance, because their needs do not meet the eligibility threshold under the Care Act).

3. In order to reach such a conclusion, the local authority must have conducted a transition assessment (or equivalent adult needs or carer’s assessment under the adult statute).

Key learning pointThe local authority must continue providing services until the relevant steps have been taken.

Page 36

Slide 21

Notes1. As set out in the SEN Code of Practice, an EHC plan will cease if someone

progresses to further or higher education, but a care and support plan is likely to be required thereafter.

2. All higher and further education institutions have clear duties and responsibilities under the Equality Act 2010 with regard to ensuring that disabled students do not face discrimination or less favourable treatment whilst applying to, and studying in these institutions. They are likely to have a learning support team or similar that can lead transition discussions on their behalf. These conversations should also ensure young people and carers are aware of their rights to the Disabled Students Allowance and student loans.

3. In many cases a young person or carer studying at university will have a dual location, for example coming home to stay with parents during weekends or holidays. Where this is the case, local authorities must ensure their needs are met all year round.

Slide 22

Notes

Page 37

1. The framework sets out best practice for the timing of transition steps as follows. Children’s services should identify young people with likely needs for NHS

Continuing HealthCare (CHC) and notify the relevant Clinical Commissioning Groups when such a young person turns 14.

There should be a formal referral for adult NHS CHC screening at 16. There should be a decision in principle at 17 so that a package of care can be

in place once the person turns 18 (or later if agreed more appropriate).

Key learning pointCCGs should ensure that adult NHS continuing healthcare is appropriately represented at all transition planning meetings to do with individual young people whose needs suggest that there may be potentially eligible.

Slide 23

Notes1. We saw earlier how the Care Act 2014 and Children and Families Act 2014

provide a single legislative framework for transition to adulthood, with a focus on personalised outcome-based approaches and carers.

2. People working across education, health and social care need to understand both Acts and how they work together. Local authorities can achieve more by implementing the two acts together. The two Acts can be used to design local pathways to adulthood that lead to better outcomes and more efficient use of resources. The national Preparing for Adulthood programme has developed a factsheet that sets out the links between the two reforms.

3. Duties in both Acts are on the local authority, not children's or adult's services, so a variety of operating models around transition are possible (e.g. 14-25 team).

4. Another example is the overlap of information and advice duties in both Acts. The Children and Families Act 2014 requires local authorities to publish a local

Page 38

offer, which includes provision of information and advice for children’s social care in their local area. The Care Act places a similar duty on local authorities to provide information and advice about adult care and support. See the information and advice workbook for more details. Given the similar requirements on both children and adult services to provide information and advice that is easily accessible, local authorities should consider jointly commissioning and/or delivering their information and advice services for both children’s and adult care and support as part of their approach to working together.

5. The EHC plan requirement for preparation for adulthood to begin at 14 is a good default position for transition planning generally and highlights the importance of building towards adulthood over time, which is particularly important for developing skills in independent living.

6. The ability to continue children's services beyond 18, and join up various assessments across both Acts, means a more flexible framework where transition can be a personalised evolution from 14-25 with no need for a "cliff-edge" transition at 18.

Summary

Slide 24

Page 39

Questions What has struck you most about this session? Thinking about what you have learnt about transition to adulthood (and on any

other modules you have completed so far)...- What links can you make between topic areas?- How might the necessary changes impact on your current arrangements?- What might the key challenges be?

Exercise What are your top three priorities in relation to transition to adulthood? Complete the action plan to identify the next steps for each priority.

Page 40

Appendices

Links to key resources

Beresford B (2013) Making a difference for young adult patients. Research briefing.Conlon L (2014) Transition Planning for Young People with Learning Disabilities in Great Britain (NIAR 359-2014) Northern Ireland Assembly. Research and Information Service Research Paper.

Cowen, A. (2010) Personalised Transition: Innovations in Health, Education and Support. The Centre for Welfare Reform.

CQC (2014) ‘From the pond into the sea’ Children’s transition to adult health services. This themed review looked at the arrangements made for children with complex health needs as they move from children's to adult services.

Crowley R, Wolfe I, Lock K and McKee M (2011) Improving the transition between paediatric and adult health care: a systematic review. Archives of Disease in Childhood. 96(6) pp.548-553.

Department for Education (2011) Statutory Guidance for Local Authorities on Targeted Support Services for Young People, with respect to supporting them through school leaving and transition into training or work as required by the Education and Skills Act 2008.

Department for Education (2010 revised 2014) The Children Act 1989 Guidance and Regulations Volume 3: Planning Transition to Adulthood for Care Leavers

Department for Education & Department of Health (2014) Special educational needs and disability code of practice: 0 to 25 years. Statutory guidance for organisations who work with and support children and young people with special educational needs and disabilities.

Department of Health (2008) Transition: moving on well: A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability.

Department of Health (2006) Transition: getting it right for young people.

Department of Health (2012) Children and young people’s health outcomes strategy,

Page 41

Report of the children and young people’s health outcomes forum

Getting a Life Available at http://www.gettingalife.org.uk/resources.html (no date) (Accessed: 17 October 2014). The Getting a Life programme ran from April 2008 to the end of March 2011, as part of the Valuing People Now employment work.

Jackson K (2010) Lost in transition? A guide to finding your way through. Second edition. Dimensions (UK)

Lidstone Dr V (2013) The role of hospices in supporting young people in transition from children to adult services. A working paper of the Commission into the Future of Hospice Care.

Local Government Association (2013) Must know on adult social care 10. Transitions.

Marie Curie Cancer Care and Together for Short Lives (2012) Don’t let me down: Ensuring a good transition for young people with palliative care needs.

Marsh S, Cameron M, Duggan M and Rodrigues J. (with Eisenstadt N, Iskander R. and Stone J) (2011) Young people with life limiting conditions: transition to adulthood. Public Service Works

McNamara K (2011) Transition for young people with life-limiting conditions: the UK picture. Together for Short Lives.

Merriman S (2009) TransMap. From theory into practice. The underlying principles in supporting disabled young people in transition to adulthood. Council for Disabled Children/DCSF

National Network of Parent Carer Forums (2013) What Good Integrated Care Looks Like in Transition

National Offender Management Service (2013) Practice Guidance: Working with Care Leavers (18-25), in custody and the community, to reduce reoffending and promote effective transition to adulthood.

National Transition Support Team (2011) Working together to improve transition for disabled young people

National Development Team for Inclusion/Council for Disabled Children (2014) PfA Factsheet: The Links Between The Children and Families Act 2014 and The Care Act 2014

Page 42

NCB (2010) Transitions between children’s and adult’s health services, and the role of voluntary and community children’s sector.

NTSW/CfDC (2011) Information and learning from the Aiming High for Disabled Children Transition Support Programme.

Preparing for Adulthood programme (PfA) Preparing for Adulthood Available at http://www.preparingforadulthood.org.uk/ (no date) (Accessed: 17 October 2014). A programme of support and resources, available to download, funded by the Department for Education as part of the delivery support for the SEN and disability reforms.

Royal College of Nursing (2013) Lost in transition. Moving between child and adult healthcare services.

Royal College of Nursing (2013) Adolescent transition. RCN guidance for nursing staff.

Social Care Institute for Excellence The Care Act: Transition from childhood to adulthood Available at http://www.scie.org.uk/care-act-2014/transition-from-childhood-to-adulthood/ (no date) (Accessed: 17 October 2014). SCIE is developing new resources to help local authority staff, social workers, young people and carers to plan for the transition to adult care services. Existing SCIE resources on transitions are also available.

Sloper P, Beecham J, Clarke S, Franklin A, Moran N. and Cusworth L. (2011) Transition to adult services for disabled young people and those with complex health needs, Research Works, 2011-02, Social Policy Research Unit, University of York, York.

Together for Short Lives (2007) The Transition Care Pathway

Handouts

Handouts relevant to this topic area: Exercise: Transition to adulthood audit tool Case Study: Isabelle