Supporting disabled children, young people and their families: guidance

Transitions

This section focuses on the transition period when young people develop from adolescents to young adults, recognising that transitions also happen at other times in life like when you move from nursery to primary school, and from primary to high school or specialist school provision.

It may be helpful to read this section along with the education, adult health and social care, further and higher education and employment sections, which provide more information in relation to those specific areas.

Please also see the Financial Support section to see what planning and financial support might be available for transitions from The Independent Living Transitions Fund.

What transitsions are

In their Principles of Good Transitions 3, The Association for Real Change (ARC) Scotland define “transition” as:

‘…the period when young people develop from children to young adults. This is not a single event, such as leaving school, but a growing-up process that unfolds over several years and involves significant emotional, physical, intellectual and physiological 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 on those who care for the child or young person.

There are laws, national frameworks and guidelines that services and organisations are expected to follow to make sure transitions are as smooth as possible for the young person and their family. They are also based on international agreements such as the United Nations Convention on the Rights of the Child (UNCRC) and United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

A range of Scottish Government policies and legislation which impact transitions for young people with additional support needs are listed under sources of further information at the end of this section.

Transitions – the experiences of children, young people and families

In 2017, The Health and Social Care Alliance Scotland (The “Alliance”) funded by the Scottish Government, produced a report exploring the transitions experiences of disabled young people and their families.

Discussions with young people, parents and carers, key professionals, and managers of relevant services formed the basis of this report. The report aimed to make a practical difference to improving transitions, using information, themes and solutions gathered from people who had lived experience of transitions.

It focused on a number of key issues, for example, the ways that the principles of Getting It Right For Every Child (GIRFEC) had been applied and whether these were helpful to families. There was also a particular focus on the experiences of a co-ordinating lead professional and of planning that was based on a holistic consideration of wellbeing. 

The report recognised and highlighted approaches which had contributed to effective transitional support and positive outcomes for the young people who experienced them. It also looked at approaches which contributed to negative experiences of transition.

The experiences of young people and their families’ transitions from child to adult services were expressed in terms of “cliffs” (obstacles) and “bridges” (facilitators) and important comments included:

• “Complex care and support need co-ordinated planning, before, during and after transition”.
• “If you change school, health and social workers at once, plan late for these changes and reduce respite… then feelings of loss, fear, confusion and exhaustion are likely”.
• “Between plans we need a point of contact for help and advice”.
• “Be realistic in planning with us – we are all in transition and transition is more than a  handover of service”.
• “Provide information not just leaflets…so that we can understand and make choices”.
• “Plan together” .
• “Explore help for the person, not a type of person”.
• “We value help that is skilled, informed, respectful, patient, creative, hopeful, reliable”.
• “Please tune in to how conditions and relationships interact?”.
• “Please consider the health and support needs of the whole family?”

Based on these, it put forward a number of recommendations which intended to support practitioners and managers in their practices, services and strategic developments.

In February 2023, the Scottish Government published a literature review of Scottish, UK and international evidence on the main challenges and experiences faced by young disabled people during their transition to adulthood. The research also included a review of evidence of best practice when supporting young people on this journey.

The findings from the literature review showed that there is a broad agreement within existing literature of certain guiding principles of positive transitions, largely revolving around holistic, personalised and concerted planning, developed in collaboration with young people and their families, and underpinned by high-quality, well-resourced and well-staffed services, and delivered in partnership.

You can read the report at – Transitions to adulthood for disabled young people: literature review.

Audio and Easy read formats of this document are also available.

The observations of young people, parents and carers included in the above reports mirror those expressed throughout the work of ARC Scotland who oversee the Scottish Transitions Forum. Members of the forum include a wide range of professionals, young people and their families. The forum’s central aim is to improve the experiences of young people as they make the transition to adult life.

Feedback from the forum and other quantitative research and consultation undertaken by ARC Scotland in their 2017 report Facing the Future together showed that:

• Most young people with additional support needs are broadly optimistic about their transition and their future.
• Many parents and carers struggle to access the support they believe their children need.
• The necessary steps to improving transitions are relatively modest, and are able to be delivered.

ARC Scotland’s Divergent Influencers Report “Hear Our Voices, Respect our Choices”, published in 2021 further reflects these findings. It aimed to capture the most important things that help young people to have a positive transition in order to better inform our understanding of how young people experience this crucial time in their lives.

Libby’s Life Story 

Libby has a supported work placement for two hours a week and is proud to get small payment each week for this. She attends a social network group for young adults with additional support needs and participates in a drama and music group. She goes swimming weekly when she is well enough and has a friend whom she meets weekly. She goes to the cinema, bowling with friends at the weekends and loves to people watch. “I think she has a more active social life than us!”

Libby is in the middle of her yearly review, which is a comprehensive exercise in partnership between third sector agencies, family and local authority. It is based on her wellbeing outcomes. The expectations of all partners in the plan are spelled out in relation to Libby’s wellbeing outcomes. Actions and activities are agreed with her. To make the best from the review, Libby made an illustrated booklet which is at the centre of her plan. This is about “what is important to me”. It is important that:

• You listen to me

• That I see the people I want to see

• That the people who support me know how I communicate

• That I stay as well as I can, eating well, exercising, using my wheels and standing frame

• That I have things to do, projects and drama and activities with friends, going to work 

Libby’s own plan showed what she needs and what has gone well this past year, what she would like to do next year and some of her projects and dreams.

A Commitment to Introduce a National Transitions to Adulthood Strategy

In the 2021 Programme for Government, Scottish Ministers committed to delivering a National Transitions to Adulthood Strategy to support disabled young people as they make the transition to adult life.

“We will begin work on a new National Transitions to Adulthood Strategy to support disabled young people as they make the transition to adult life, and provide them and those who look after them with joined‑up guidance and support to unlock better educational and employment opportunities and health outcomes”.

This commitment was reaffirmed in the First Minister’s Equality, opportunity, community: New leadership – A fresh start, published on 18 April 2023.

We have established an external strategic working group, comprising representatives of parent carers, education, social work, health, local authorities and third sector partners, to help take forward work on the Strategy.

Young people are also integral to the design and development of this Strategy in order for it to be as effective as possible. As part of our planning we are ensuring that there is sufficient time to allow for the meaningful engagement and participation of disabled young people in its development.

Principles of Good Transitions 

To achieve their full potential, young disabled people often need help or support in different areas of their lives, including the move from school or college, or from child to adult services. This might mean: finding a job, a new educational course or training, managing welfare and housing changes, reviewing healthcare needs, providing information and advocacy, assessing capacity and managing risk. 

ARC Scotland’s Principles of Good Transitions 3 provides a framework to inform, structure and encourage the continual improvement of support for young people with additional needs between the ages of 14 and 25 who are making the transition to young adult life.

The seven Principles, outlined below, are informed by the applicable legal frameworks around transitions, and by what research tells us works best in achieving excellent outcomes for young people. They make it easy for everyone to see what organisations should be doing so that young people with additional support needs have a good experience of leaving school and moving on to adult life. They have been endorsed by many organisations that provide support for young people, and by the Scottish Government and national bodies.

• 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

Principles into Practice trials

In partnership with ARC Scotland the Scottish Government delivered the ‘Principles into Practice’ Trial Programme in 10 Local Authority Areas which commenced in January 2020. The purpose of the trial was to

• Improve the lived experiences of young people who need additional support to make the transition to young adult life, and to ensure young people are at the centre of all transition planning for their future
• Identify, design and test changes that transform how young people with additional support needs are supported in their transition to young adult life
• Test and bring Principles into Practice to completion to support its implementation more widely across Scotland.

The programme concluded in March 2023 and the Scottish Government have now committed further funding until March 2025 through the Children, Young People, Families and Adult Learning (CYPFAL) Third Sector Fund to support ARC Scotland to continue to run the Scottish Transitions Forum, and to support the wider implementation of Principles into Practice across more local authority areas in Scotland.

A revised and tested Principles into Practice Framework was launched in June 2023, alongside an Impact report which details the key challenges and successes of the trials.

As part of the Principles into Practice Trial, ARC Scotland also developed an online tool called Compass. Compass helps young people, parents and carers, and professionals understand the transitions process better, and find useful information at the right time. It is free of charge and can be used in all areas of Scotland to help prepare and plan for transitions.

There are three versions of Compass – one for young people, one for parents and carers, and one for professionals. Each one provides information tailored to the individual user, based on their responses to questions asked within the tool. It also collects peoples’ views about transitions anonymously, to help make the process of transitions better.

You can find out more about the three versions and how to use them on the Compass webpage.

Role of Parents and Carers in Transitions

As highlighted in ARC Scotland’s definition of transition it is important to recognise that the young person’s journey to adulthood can also impact on the family or on those who care for the child or young person. As part of their work ARC Scotland facilitate a parent carer network to support parents and carers of young people with additional support needs going through transitions. You can find out more about this here: Parent and Carer Network - Scottish Transitions Forum

Parents and carers have the right:

• To request an assessment of needs for their young person
• To request a personalised plan to identify what is important to them
• To be involved in the transition planning process and have their views taken into account
• To request an appropriate support plan from your local authority if their child meets the eligibility criteria

They may also:

• Contact the school to clarify when transition planning will commence if they have not heard from them; it is important to be included in the process.
• Request an assessment of needs if adult support services will be required

Further information and guidance to support transitions is also available on the CONTACT Scotland resource Talking About Tomorrow; for example there is a summary table of when parents and carers should be making contact with relevant services which is copied below:

What to do	Who to ask	When
Find out how school handles transition planning	Class teacher or additional support staff	Any time after starting secondary school
Ask for assessment of needs and carers’ assessment	Local council social services department	Any time, but at least 3 years before leaving school is helpful
Arrange a finance/benefits health check	Disability charity or other organisation	When your young person is 15 or whenever circumstances change
Find out about guardianship /power of attorney	Solicitor experienced in additional support needs issues	Begin conversation up to 2 years before it’s needed
Find out about volunteering and community learning possibilities in your area	Job Centre, Skills Development Scotland, personal contacts	As early as possible
Ask healthcare staff about transition planning	Any health professionals regularly involved with your child	At least 2 years before moving to adult services
Put together a profile of your young person’s interests, abilities and needs	Your young person, plus friends or family members who know them well	Begin early – any time after starting secondary school

Coordinated transitions planning and support

Research in Scotland shows that most young people feel hopeful about their transition and their future. However, young people and parents often comment that support for transitions should be more joined up with a single point of contact to help the process. (See The Alliance and ARC references in Appendix).

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

Important points to consider:-

• Everyone has a role in making sure that transitions go ahead positively and that young people with additional support needs stay supported and reach their full potential
• The School Team commonly coordinates transitions, inviting in other organisations and agencies as needed.

If you are not contacted by the school in good time then you should request more information about planning and what your involvement will be.

Under the Additional Support for Learning Act 2004, when a young person is expected to leave school the education authority has a duty to request and share information within specific timeframes to help support their transition. This should take place no later than 12 months before the expected leaving date. They must provide information to other agencies no later than six months before a child or young person is expected to leave school. Local authorities are encouraged to prepare for children and young peoples’ transitions wherever possible in advance of these timeframes.

Where a young person needs support from other agencies to transition from school, their education authority should work with those agencies, taking into consideration the views of the young person, to establish the support required and ensure it is put in place.  Appropriate agencies can be any other local authority, any NHS Board or any other person specified by the Scottish Ministers. Those specified under regulations are Skills Development Scotland, further education colleges and higher education institutions in Scotland.

Further information and if needed, support is available by contacting Enquire who provide further information about transition timescales, a summary of duties and information relating to education and additional support after 16.