Supporting disabled children, young people and their families: consultation

3. Transitions

Transition is the period when young people develop from children to young adults. It is not a single event, such as leaving school, but rather a growing-up process that unfolds over several years and involves significant emotional, physical and intellectual changes. During this period young people progressively assume greater autonomy in many different areas of their lives and are required to adjust to different experiences, expectations, processes, places and routines. Transitions also impact on the family or those who care for the young person.

The policy context of this issue is multi-faceted, with a wide range of Scottish Government policies impacting on transitions for young people with additional support needs. These include: The Education (Additional Support for Learning) (Scotland) Act 2004 (as amended), The Right Help at the Right Time in the Right Place ( the Doran Review), The Children and Young People (Scotland) Act 2014, Self-Directed Support and Welfare Reform, Developing the Young Workforce: Scotland’s Youth Employment Strategy, and Opportunities for All: Supporting all young people to participate in post-16 learning, training or work – to name just a few.

The Health and Social Care Alliance, known as the ALLIANCE, were funded by the Scottish Government to produce a report which explores the transitions experiences of disabled young people and their families.

The study was wide-ranging and involved 29 young people and their families from across Edinburgh, East Lothian, West Lothian, Midlothian and Scottish Borders Council areas. The discussions undertaken with them, key professionals and managers of relevant services form the basis of this report. The aim of the report is to make a practical difference to improving transitions, using information, themes and solutions gathered from people who have lived experiences of transition.

It focused on a number of key issues, for example, the ways in which the principles of the Getting it right for every child approach have been applied and whether these are helpful to families. There was also a specific interest in the experiences of a co-ordinating lead professional and in the experience of planning which is based on a holistic consideration of wellbeing. Special attention was paid to the extent to which these core components are experienced in service transitions.

The report recognised and highlighted approaches which have contributed to effective transitional support and positive outcomes for the young people who experienced them. Conversely, it also looked at approaches which have contributed to negative experiences of transition. Based on these, it put forward a number of recommendations which are intended to support practitioners and managers in their practices, services and strategic developments.

Principles Of Good Transitions

To achieve their full potential, young disabled people often require support in different areas of their lives, including the move from school or college, or the transfer from child to adult services. These may include: identifying and achieving participation in employment, education or training, managing welfare and housing changes, reviewing healthcare needs, providing information and advocacy, assessing capacity and managing risk.

The Principles provide a basis to inform, structure and encourage the continual improvement of professional support for young people with additional needs between the ages of 14 and 25 who are making the transition into young adult life.

The content of each principle has been predominantly informed by the work of the Scottish Transitions Forum, alongside relevant national legislative and policy developments. Crucially, the principles also align with the rights-based approach of the UN Convention on the Rights of the Child.

Principle 1: Planning and decision making should be carried out in a person-centred way.

Principle 2: Support should be co-ordinated across all services.

Principle 3: Planning should start early and continue at least to age 25.

Principle 4: Young people should get the support they need.

Principle 5: Young people and their families must have access to the information they need.

Principle 6: Families need support.

Principle 7: A continued focus on transitions across Scotland.

As set out in the ‘Fairer Scotland for Disabled People’ Delivery Plan, the Scottish Government is committed to driving forward positive momentum on this issue.

The Scottish Transitions Forum is funded by the Scottish Government and now has over 800 members representing a wide range of professionals, young people and their families. Membership is free and open to anyone who is committed to improving transitions for young people with additional support needs.

The forum's explicit aim is to improve the experience of young people (14 to 25 years) as they make the transition to adult life.

Its work is guided by three objectives:

• To guide and inform improved
  approaches to transitions across Scotland.
• To support people to work
  collaboratively, share learning, identify
  gaps in provision and generate solutions.
• To involve young people with additional
  support needs and their families in the
  work of ARC Scotland, the charity which
  facilitates the forum.

Coordinated Transitions Support

Most young people are broadly optimistic about their transition and their future. However, young people and parents consistently comment that support for transitions should be more joined up with a single point of contact. Effective co-ordination of transition planning and support at a local level is therefore critical, particularly for those with learning disabilities or multiple and complex needs.

Co-ordinated approaches can be delivered in a number of ways. The most frequently used strategic approaches are transitions co-ordinators or local transitions forums or networks. Example partners who should be involved include:

• Children and young people themselves
• Parents and carers
• Health and allied health professionals from child and adult health services
• Primary and secondary health-care representatives
• Skills Development Scotland/careers services
• Local Opportunities for All representatives
• Child and adult social work services
• Third-sector services – such as support, advice and advocacy
• Education professionals pre- and post-16 education
• Local area co-ordinators
• Housing and accommodation providers

Young people and their families should always be at the centre of transitions planning and be provided with clear information about support available to them from all partners.

Independent Living Fund – Transition Fund

The Scottish Government created a five million pound scheme to support disabled young people in transitions (aged 16- 21). This will be a broad discretionary scheme to support individuals to live independently and contribute to communities.

Short term grants will be awarded to allow the young person to explore, plan and achieve outcomes that they have themselves identified; and for which other sources of support are not actually available. It is not the role of the new scheme to replace existing statutory services, or substitute for delivery of their wider duties for provision of social care.

Work has taken place directly with disabled people to develop this fund, and the co-production process is continuing in the scheme's set-up. This includes development of the application process, making sure it is as accessible as possible and ensuring that help is available to an interested young person.

Further work is required to develop more consistent and joined up approaches to transitions that provide a single point of contact and accountability, for young people and their parents and carers.

More information? ARC Scotland facilitates the Scottish Transitions Forum.

Adult Health And Social Care

The wishes of children and young people should be at the centre of any decisions made about their health or social care support. This follows the belief that young people and those who care for them are best placed to know what they need, provided they have access to the right information and support. Legally, professionals and decision makers must have regard to the views of the child.

My transitions should be Planned and Co‑ordinated: Care planning into adulthood should provide reassurance to children and young people that plans and systems are in place to avoid rushed or abrupt transitions. The national guidelines for best practice developed by various partners all stress the importance of planning transitions early – usually around age 14 – or immediately for young people entering support after that age.

There is evidence that person-centred approaches provide a way to improve outcomes for young people in transition. Person-centred planning explores a young person’s aspirations and is not limited by eligibility or entitlement. The focus is on what matters to the person before allocation of the budget; and identifies individual needs as well as strengths and assets of the young person and their network.

The Getting It Right For Every Child approach which places wellbeing at the centre of all considerations should also apply to transitions experiences. Adult assessments used during transitions need to be holistic and explore the personal outcomes of the young person regardless of whether they will be met with support from statutory or universal services.

My family should be Informed and Supported: The needs and roles of family are likely to change as the young person they care for grows up. Families are often central to the continuing care of young people with additional support needs and are the people most likely to provide guidance and support during transitions.

Families should be provided with the information they need to make important decisions, such as those about self-directed support, and information should be provided in an accessible format. For example, NHS Scotland has developed an Accessible Information Policy committing to provision of information that is as easy to access and use as possible by the intended audience.

Further work is required to explore the scope for developing a more unified national approach to identifying and measuring transitions outcomes and opportunities to share learning, tools and resources between local authority areas.

Case Study:

ALLIANCE Report “Experiences of Transitions to Adult Years and Adult Services”:

B, is 16 years old and lives at home with parents and siblings. Although B’s case is an example of well co-ordinated planning and early thinking about transitions to adult services, B and her family still face some serious practical concerns.

B has cerebral palsy affecting all four limbs and is fed by gastric tube. She has some visual impairment. She has needed to be ventilated since she was 9 years old. She needs 24/7 care and so to assist her parents there are 2 shifts of carers. Nobody comes on weekends or evenings between 4.45-8pm.

The changeover in staff can be problematic because handover processes at night when family are tired can be prolonged every time there is a change. Also there are times when new staff are not familiar with the signs of something not being right.

The family rarely have the home to themselves. It is an essential part of the balance that they have some time to themselves – not so much apart from B as to themselves ‘as a family’. No professional carer can be left alone with B because of the complexities of caring for her. This means that even for a short visit to the shops, she would have to be dressed and fitted in to a wheelchair and taken with her mother. The option of two professional carers at home would not be funded.

The biggest concern about transition to adult services is that the formula for calculating respite will change and the number of nights that they get to themselves is likely to be 40‑42 per year.

Even a small reduction makes a significant difference to the emotional and practical sustainability of this complex care at home equation. The advice the family received is that if the care for a young adult cannot sustained on 40 nights per year, the alternative is full time nursing care. The financial cost of full time nursing or hospital care is apparently many times the cost of maintaining the level of respite on offer to B as a child. Her health and care needs will not get any simpler as she gets older and as her parents get older.

There is a service which provides respite as well as nursing and healthcare to those with profound and multiple health needs. This option will shortly be closing. B’s parents have guardianship for her and progressed this quickly when she turned 16. There are annual reviews at the school involving a range of professionals and there is a composite plan consistent with the Getting it Right for Every Child approach expectations. Parental perspective on the inter agency reviews is that while an integrated plan may be useful on paper, it is not necessary for all professionals to be present.

In short, transitions have begun and been considered early. By the time B needs respite in adult services and a day-care centre beyond school she will have some familiarity with care staff and setting so changes have been incremental. B’s close family will remain the foundation for all co-ordination and care.

Further And Higher Education

Children and young people have a right to education and further education plays an important role in supporting many young people’s personal and career development.

Where young people choose to attend further education, it is important that they receive the support they need while in college and to make the transition successfully. Following transition, further and higher education falls outside the supportive legislation provided by Getting It Right For Every Child and the Education (Additional Support for Learning) (Scotland) Act 2004 (as amended). There are a number measures in place to widen access to further and higher education.

Work is in hand through the Scottish Funding Council and with other partners to support young people with disabilities in both college and university; for example, improving the 15-24 learning journey; reviewing the Further and Higher Education student support package, and delivery of the (non-income assessed) Additional Support Needs for Learning Allowance.

All colleges and universities have a duty under the Equality Act 2010 to make reasonable adjustments to ensure that students with disabilities which affect their studies are not placed at a disadvantage. This duty requires education providers to continually review and anticipate the general needs of disabled people, rather than simply waiting until an individual requests a particular adjustment.

Disabled students studying a course of higher education can apply to the Student Awards Agency Scotland for the Disabled Student Allowance (DSA). DSA is a non-income assessed allowance to cover any extra costs or expenses a student might have while studying, which arise because of their disability or learning difficulty.

This resource will seek to support work already undertaken to review and improve accessibility of further and higher education to all children and young people with disabilities.

Employment And Volunteering

For many young people the transition into adult years is accompanied by a passage into employment, and living with a disability should not be an impediment to this route. Every disabled young person who can and wants to work ought to have the opportunity to find a fulfilling job, suitable to their skills.

As set out in the Fairer Scotland for Disabled People Delivery Plan, the Scottish Government is committed to better enabling disabled people of all ages to participate in the workforce. A key objective will be to (at least) halve the employment gap between disabled and non‑disabled people, recognising the much-needed talent, skills and innovation that they can bring.

One of the desired outcomes of the Developing the Young Workforce: Scotland’s Youth Employment Strategy is to increase the employment rate for young disabled people to the population average by 2021. The Equalities Action Plan for Modern Apprenticeships ( MA) in Scotland is a five-year plan includes specific improvement targets for MA participation by disabled people, including part-time and flexible engagement, to be achieved by 2021. This provides young disabled people with the highest level of MA funding until the age of 30.

Case Study:

Steven was initially referred to the Employability and Skills team in February 2015 after leaving school and began on Activity Agreement straight away. Previously due to his social and emotional needs, Steven found it difficult to manage day to day. Living in a rural village, travelling was going to be a big part of Steven’s day and he was not overly confident about this. Steven took part in travel training and soon after was able to travel independently from his home to the Employability and Skills office for appointments and to take part in a Personal Development group. Attending the personal development group uncovered that Steven was keen to start in a work placement as soon as possible, and one was sourced at a golf course. Steven received excellent feedback from his supervisor at the golf course and did really well, but he felt that it was not the right setting for him and did not suit his needs.

Another placement was sourced for Steven and he began working in the kitchen of a restaurant. Again, Steven received excellent feedback, enjoyed this placement and got on with the rest of the team, but due to his needs, felt the noisy environment was too much for him. A third placement was found for Steven and he began working in his local grocery shop in the stock room and on the shop floor. Steven formed positive relationships in this placement and, again, received excellent feedback with the manager of the store stating he would have loved to have offered Steven a job but unfortunately, due to him being under eighteen, it was not possible.

A placement was then sourced in the petrol garage in a nearby town. Steven continued to excel in this placement, so much so that he was offered a job, which he accepted. Steven says of his progression: “In my opinion, the Step programme helped me boost my self-confidence and public communication, by finding me a place of work.” Steven’s supervisor says: “Whilst Steven’s work ethic and qualities have never been in question, his confidence and customer relations have gone from strength to strength. Such to the point Steven is an integral part of the team now at the store. We couldn’t ask more of him as an employee.” Steven’s Employability and Skills officer, Maggie, says: “Steven was a pleasure to work with and I am extremely proud of the journey he has made.”

As part of our commitment to prepare and support disadvantaged young people into and during employment we provide funding to the Scottish Council for Voluntary Organisations (SCVO) to deliver the Community Jobs Scotland programme ( CJS). CJS provides support and job training opportunities for unemployed young people aged 16-29 who face additional barriers to employment, and confirms the Scottish Government’s commitment to working with the third sector to provide that support.

A £500,000 Workplace Equality Fund aims to address long standing barriers to accessing the labour market. It is anticipated that the Fund will help to identify and promote practice that reduces employment inequalities, discrimination and barriers, including recruitment and progression for disabled young people.

In April 2017, the Scottish Government delivered a new approach to employability support. Using newly devolved powers we put in place transitional services that focus on helping disabled people and those with long-term health conditions find work in a manner not driven by the threat of benefit sanctions.

We are building on this by introducing Fair Start Scotland, a distinctly Scottish employment support service which will have a focus on helping people with disabilities and those most disadvantaged in the labour market move into and sustain fair work.

Devolved employment services is just one of a number of levers that could provide more effective employment support for people, and in turn, create a fairer labour market and more inclusive growth. Our approach will require more effective integration and alignment of support and services to make the current landscape easier to navigate and which will ultimately deliver better outcomes for people. We will shortly publish an Action Plan that will set out how we can join up employability support with other services and systems, principally health, justice and housing as we know their ability to work together is critical to help those groups facing the most severe labour market inequalities.

We are currently funding 13 projects operating across 18 local authority areas that are testing innovative approaches to joining up employment support with health and social care, justice and housing services. Projects include early intervention approaches to help young people with convictions with developed pathways to training and employment at the earliest point that they enter the Justice system and helping people with mild to moderate health conditions to better manage their condition allowing them to return to work or to start looking for work.

Such enhanced integration and coordination is never more important than in the transition period for a disabled young person. It provides an opportunity to embed employment discussions and support much earlier in the transition planning process, enabling participation to be better identified and prepared for. In cases where employment is a viable option, it will also allow health and social care processes to be designed with this in mind, ensuring that such support does not become the cause of inadvertent barriers.

Case Study:

The Single Gateway Health and Work project commencing early 2018, in Fife and Dundee, will trial new solutions to help more people with disabilities and health conditions stay in or move into work. The project is aimed at enhancing the integration and alignment of health, employment and other services, to support ease of access and engagement with appropriate services for each individual. This will ensure that people can access the support they require at an early stage and before falling into long-term unemployment.

The project will include three key strands of work which will ensure people are able to access the right employment and health services at the right time. This includes:

The introduction of a new “Single Gateway” access channel – to provide quicker, more effective access to a range of existing, funded, health and work support services. This Single Gateway will act as a single point of contact not only for employers, healthcare professionals and Job Centre Plus, but also for self-referral, allowing people with health issues or disability, (struggling to stay at work or looking to access work) to have more choice in how they access services, more say in the support and intervention they need and fast support in managing their health condition and employment status.

Alignment and enhancement of core health and work services – to more effectively integrate our health and social care and employability services to help disabled people and people with long-term health conditions move into and remain in sustainable employment.

A programme of improvement work with affiliated health, social care and other services to enhance the effectiveness and extend the reach of the gateway. This improvement work will focus on promoting better identification, referral and coordination practices, better triage/targeting of resources and better knowledge and behaviours in relation to physical health, mental health and work.

The mobilisation phase of the project has already started, with pre go live testing in Spring 2018 and full service delivery from Summer 2018 until Summer 2020. With an interim evaluation report to be provided in 2019 and final evaluation publication in Spring 2021, the lessons learned from the project will allow us to identify service and beneficiary outcomes, to inform wider application across Scotland.

We need to be much more proactive in recognising that employment is, with the right support, a valuable option for disabled young people. It is widely acknowledged that being in work can be good for an individual’s health and wellbeing, boosting confidence and independence. A number of schools for learners with additional support needs are currently developing career pathways for young people, in collaboration with employers, tailored to help them focus positively on their career aspirations. As these services develop we need to consult widely with disabled young people and their families, and take account of their views.

4. Concluding statement

In 2016, the Scottish Government funded a survey of families with disabled children and young people across Scotland to gather evidence about their information needs. Families said they would favour a centralised resource which signposts to relevant information and organisations. In response to these wishes, we began to develop the preceding resource in collaboration with a wide range of partners.

When families were asked what information they would most like to access, recurring themes included: types of professional support for their child, the law and their child’s rights, transition, and leisure and social activities. This resource provides opportunities to signpost to existing sources of information about these topics and invites feedback on how these could be improved.

Families also reported a lack of sufficient information if their child has multiple conditions or complex needs or if they are looking support that is not condition-specific. Therefore, this resource does not set out to be an exhaustive list of condition-specific information, nor a directory of local services; there will be a focus on clarifying national policy and entitlements.

Families sought an improved understanding about the range of choices they felt they could make about support. Similarly, we know that access to clear and reliable information empowers families. Information needs to be shared consistently and in ways which are accessible for everyone. This resource aims to communicate information as inclusively as possible and makes particular note of how families can achieve more choice and control over the care and support that they need and are entitled to.

End of consultation document