Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 14: Children and Young people – Transitions to Adulthood

What do we mean by "transitions to adulthood"?

The term 'transitions to adulthood' will mean different things to different young people, and as such will be achieved in many different ways and timescales. In their Principles of Good Transitions, ^[361] the Association for Real Change (ARC) Scotland refer to this 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.

What we have heard

There is well-documented evidence that the planning and support for disabled young people making the transition to young adult life could be improved.

In February 2023 we published an independent literature review^[362] on the main challenges and experiences faced by young disabled people during their transition to adulthood. This considered Scottish, UK and international evidence.

The literature review set out that there is consistent evidence that positive transitions are characterised by the following:

• early and sustained transition planning
• holistic and coordinated wrap-around support
• services delivered in partnership
• designated keyworkers as a coordinating point of contact and continuity;
• person-centred support and preparation
• family involvement in planning and decision-making
• parental and familial support throughout the transition
• the provision of clear and accessible information
• adequate services, resources and staffing

"I always get really anxious to the point of feeling sick about transitions. Had to hit rock bottom to get any form of support… it felt like a tick box."

– Young Person ^[363]

"Transitions from school can be very scary; change is a big thing to navigate, and knowing what it will entail is hard." – Young Person

Findings from the literature review, along with the views of disabled young people and those who support them, suggest that common experiences of transitions can include:

• stress and uncertainty for the young person;
• difficulties transferring from child to adult services;
• changes in eligibility for services, and support arrangements;
• a sharp drop in support;
• inadequate transitions planning;
• lack of clear information about the transitions process;
• lack of joined-up working (such as communication and collaboration) between services and other partners;
• inadequate account being taken of young people's capabilities, views, needs and aspirations; and,
• stress and difficulties faced by family members relating to their young person's transitions.

The Scottish Parliament's Education, Children and Young People Committee recently considered proposed legislation for transitions to adulthood in response to the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Member's Bill.^[364] In its Stage 1 Report, published in October 2023, the Committee noted its concerns about some of the evidence it had received on the poor experiences of transitions for many disabled young people, and recognised the need to act on these issues to improve disabled children and young people's experiences of transitions.^[365]

What did LEAP think?

LEAP members thought that more needs to be done to support neurodivergent young people, and young people with learning disabilities, to experience a positive transition into adulthood. LEAP members expressed concern about the sudden loss of structure and support when young people who are neurodivergent or have learning disabilities leave school. They provided the following views:

• Transition planning starts too late and is not as person-centred as it could be.
• Care-experienced young people with learning disabilities need significant additional support to transition to adulthood.
• Clinicians and professionals have insufficient awareness of existing policies and guidelines, with significant local variations.
• There might still be children and young people being admitted to adult mental health wards instead of a Child and Adolescent Mental Health Service (CAMHS) unit.
• There needs to be more short break or respite care suitable for young people transitioning to adulthood that is consistently provided across Scotland.
• There was a lack of college courses available to move on to after school. Some LEAP members shared that they were offered to repeat the same course multiple times as there wasn't anything else available to them. Other members shared that they couldn't access a college course because they were already full with other people who had been repeating the same course for years. They felt that there is low aspiration and expectation of many college courses for college students for students or applicants with learning disabilities.
• There is a sudden lack of support when transitioning from school to university and that whilst some people are able to perform well academically, they struggled or had to drop out because of the lack of support provided to them. It was mentioned that being able to perform well academically should not be an indicator that support is not needed.
• Poor transitions linked to poor outcomes around employment.

LEAP members also noted some positive experiences and developments:

• One member's son who is neurodivergent and has learning disabilities had a positive experience of being assessed by their local social services' learning disability transition team, receiving funding for college support and being able to move into wheelchair accessible accommodation with 24/7 care.
• LEAP members were pleased that one of the deliverable identified in the Scottish Government's work programme to develop CAMHS services is the development of neuro-developmental services for children and young people. It was noted that a national specification had been published which some members thought had an excellent approach and use of language which includes individual transition plans to adulthood.

Where do we want to get to?

There are already a range of legislation, plans and policies in place that support the objective of improving transitions to adulthood, and we are committed to doing more to make the transitions journey for every young person a smoother and more positive one.

In the 2021 Programme for Government,^[366] the Scottish Ministers committed to introducing Scotland's first National Transitions to Adulthood Strategy in this Parliamentary term to ensure there is a joined-up approach so all disabled young people can experience a supported and positive transition to adult life. This commitment was reaffirmed in April 2023 in First Minister's Policy Prospectus.^[367] In this prospectus we have also committed to helping all school leavers by 2026, regardless of their background, to access the transitions support they need to achieve their potential, and ensuring every young person aged 16-24 can further their education or secure a job or training place.

In September 2023 we published our Statement of Intent^[368] which is based on what we have heard through our research and engagement to date. It sets out the proposed scope, vision, and priorities for a National Transitions to Adulthood Strategy for disabled young people. This has been co-developed with an external Strategic Steering Group^[369] and some groups of disabled young people. The Steering Group also includes representatives of: parent carers; education (including further education); employment; health; social care; the third sector and local authorities.

We recently published a questionnaire alongside the Statement of Intent to gain further views from a wide range of people. We will use this feedback to develop a National Transitions to Adulthood Strategy, which we aim to consult on more widely in 2024, before publishing the final strategy.

What happens now?

As there is already a range of legislation and policies in place that support the objective of improving transitions to adulthood for disabled young people, in addition to the development of a National Transitions to Adulthood Strategy, any new proposals to improve transitions to adulthood should complement this existing framework. This includes:

The Equality Act 2010 ("the Equality Act")

The Equality Act makes it unlawful for public authorities and others to discriminate against, harass, or victimise employees and people who use services. It requires public authorities and others to make reasonable adjustments for disabled people, to avoid disadvantage.

The Public Sector Equality Duty

As discussed in the introduction, the Equality Act introduced the Public Sector Equality Duty (PSED). Under the PSED, public authorities, in the exercise of their functions, and others who exercise public functions, must have due regard to the need to:

• eliminate unlawful discrimination, harassment and victimisation and other conduct that is prohibited by the Equality Act;
• advance equality of opportunity between people who share a relevant protected characteristic and those who do not; and,
• foster good relations between those who share a protected characteristic and those who do not.

Social Care (Self-Directed Support) (Scotland) Act 2013 ("the 2013 Act")

The 2013 Act seeks to ensure that children and adults are given more choice and control over how their social care needs are met. It places a duty on local authorities to have regard to the general principles of involvement, informed choice and collaboration when carrying out some of its functions including its functions under the 2013 Act. This includes assessment and planning functions under section 23 of the Children (Scotland) Act 1995,^[370] the Social Work (Scotland) Act 1968 and the Carers (Scotland) Act 2016.

We have also produced statutory guidance on Self-directed Support^[371], which, amongst other matters, provides detailed guidance on how this Act interacts with other assessment, planning and supporting duties.

Education (Additional Support for Learning) Scotland Act 2004 ("the 2004 Act)

The 2004 Act is described in more detail in the Education section of this consultation paper. The 2004 Act provides that if a child has complex needs which require the support of another public service (such as social work or health service), then a Co-ordinated Support Plan must be prepared. Section 12 of the 2004 Act provides for duties on the education authority to engage with any such agency or agencies as appropriate no later than 12 months prior to the young person finishing school education. It enables professionals from multiple agencies to plan together to meet a young person's needs and to co-ordinate their support.

Additional Support for Learning (Changes in School Education) Scotland Regulations 2005

These regulations govern transitions within a child or young person's school career.

Transition Care Plan (TCP) Guidance

The Transition Care Plan (TCP) Guidance, published in 2018, describes the standards required in the planning of good transitions for young people moving from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services. This approach allows flexibility for those aged 18-25 to continue their care and treatment with CAMHS where this is in their best interests rather than automatic transfer to adult services.

GIRFEC and the Child's Plan

As discussed in the introduction, GIRFEC provides a framework to ensure that everyone in Scotland can work together to support children and young people to grow up feeling loved, safe and respected so they reach their full potential. GIRFEC policy and guidance recognise that well planned and supported transitions are key for children and young people.

In October 2023, we published our 'Getting It Right For Every Child' Child's Plan Practice Statement.^[372] This includes new guidance for transitions which outlines that particular consideration should be given to disabled children and young people.

The non-statutory GIRFEC child's plan remains an important element in the ways children's and related services can work in a co-ordinated way to support the wellbeing of children, young people and their families. The child's plan should be used to support quality transitions by enabling those involved to effectively plan for changes together, and in time, to ensure co-ordination and continuity of support.

Using the GIRFEC approach, practitioners and lead professionals should support a child or young person's wellbeing through transitions by working alongside them and their family, and other practitioners involved in transition planning. They should ensure the views and rights of the young person and family are considered in decisions throughout a transition. Effective transfer of information between services during transitions, in line with information sharing guidance, is also essential.

GIRFE

We are also currently co-designing Getting it Right for Everyone (GIRFE),^[373] a proposed multi-agency approach to support and services from young adulthood through to end of life care. One of the key themes includes young people in transition from GIRFEC to GIRFE.

International Human Rights

The UNCRC sets out the international human rights standards for children up to the age of 18. Many of the articles are relevant to transitions. For example, under Article 12 every child and young person who is capable of forming their own views has the right to express those views freely in all matters that affect them, with those views being given due weight in accordance with the age and maturity of the child.

As noted in the introduction we are progressing a Human Rights Bill for Scotland as well as the United Nations Convention on the Rights of the Child (UNCRC) (Incorporation) (Scotland) Bill, to incorporate a wide range of internationally recognised human rights belonging to everyone in Scotland into Scots law, within the limits of devolved competence.

The Association for Real Change (ARC) Scotland's Principles of Good Transitions

We support ARC Scotland to run the Scottish Transitions Forum. This forum has around 950 members and aims to improve the experience of young people who require additional support who are making the transition to young adult life. ARC Scotland's Principles of Good Transitions^[374] are widely endorsed by many stakeholders with a role in supporting disabled young people's transitions to adulthood, including the Scottish Government. We promote the Principles and Principles into Practise^[375] as a good practice framework for practitioners across a range of services. We have also supported ARC Scotland to develop Compass which is an online tool to help young people in Scotland, their parents and carers, and the professionals who support them, with the transition to young adult life.

Developing the Young Workforce (DYW)

Developing the Young Workforce (DYW)^[376] facilitates the engagement between employers and schools to support young people to transition into the world of work.

Through DYW, we have continued to provide funding to Enable's 'Stepping Up' transitions programme, which connects disabled young people to fair work, education and productive activities designed to support a successful transition into adult life and work.

Independent Living Fund

The Scottish Government is reopening the Independent Living Fund on a phased basis, with an initial £9 million on 2024-25 to enable up to 1,000 additional disabled people, including children, young people and adults, with the most complex needs to access the support they need and deserve to live independent lives.^[377] This will supplement the existing work of Independent Living Fund Scotland's Transition Fund which supports young people in transition to adulthood, aged 16-25, through one year grants.

Colleges and University: support for neurodivergent students and students with learning disabilities

Institutions' duties

Each college or university has a duty under the Equality Act to make 'reasonable adjustments', to ensure that students with disabilities, long-term medical conditions or additional support needs are not placed at a disadvantage in comparison to non-disabled students. Institutions are therefore expected to ensure that these students are supported as they study in further and higher education. Each institution's support or disability services should advise students what support they can access.

The Scottish Funding Council (SFC) has, together with the Equality and Human Rights Commission, recently developed a National Equality Outcomes framework to address the most persistent inequalities in further and higher education.^[378] Under this Framework, Institutions are asked to consider and report on progress towards the outcomes as part of the 2021-25 Public Sector Equality Duty reporting cycle.

The SFC has committed to doing more to address specific issues faced by neurodivergent individuals, as is outlined in its Tackling Persistent Inequalities Together report, which sets out the Outcomes, to ensure the needs of this group are being met.^[379]

Disability, as a protected characteristic, is included as part of this work, and the following National Equality Outcomes related to disabled students:

• The success and retention rates of college and university students who declare a mental health condition will improve.
• Disabled students report feeling satisfied with the overall support and reasonable adjustments received, including from teaching staff, while on their course.
• Disabled staff and students report feeling safe in the tertiary system.
• Where representation is not proportionate to the relevant population, increase the representation of disabled staff in the workforce and on college Boards and university Courts

Funding provided to universities and colleges

Funding is provided to Scottish universities, via the SFC, to assist with the costs incurred in providing additional materials and services for disabled students. This is called the Disabled Students Premium. For Academic Year 2022-23 this funding totalled £2.87m.

We also provide funding to colleges to support the teaching and learning of students with additional support needs. This is called the Access and Inclusion Fund. For Academic Year 2022-23 this accounted for £51.8m of the £522m that was allocated in core teaching funding to colleges.

Transitions and student support in Further and Higher Education

The Additional Support Needs for Learning Allowance is a non-income assessed allowance administered by individual colleges. It is intended to support students with disabilities or additional learning needs who are studying a course of Further Education and may have extra costs.

The Disabled Students Allowance is a non-income assessed fund that is administered by Student Awards Agency Scotland. It is intended to support disabled students and those with additional learning needs who are studying a course of Higher Education and may have extra costs because of their impairment.

Independent Advocacy, advice and support

We know that independent advocacy can be fundamental to ensuring the realisation of children and young people's rights. We have therefore increased support to Clan Childlaw, to increase their capacity; to provide advocacy support for children and young people; to develop training and materials; to work with us to help identify areas where children's rights are not being met; and, to develop child-centred legal professional training.

We also fund a national children's service, called My Rights, My Say^[380], which provides advice and information, seeks children and young peoples' views, and provides advocacy and legal protection focussed on children and young people exercising their rights in respect of education and transition planning. We also fund The Support in the Right Direction programme which provides local independent support, advice and advocacy for all social care user groups.^[381]

What can the LDAN Bill do?

In their Stage 1 Report on the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Member's Bill, the Education and Skills Committee noted that many people have described the current legislative landscape as being complex, cluttered, and difficult to navigate for young people and their families, and, in some instances, for the professionals working to support them.^[382]

The Committee's report concluded that "… the Committee is not yet convinced that introducing further legislation in an already cluttered and complex legislative and policy landscape will resolve the issues…". Rather, there was thought to be a "significant implementation gap between the [existing] intended policy and the experiences of children and young people." In the Stage 1 debate on the general principles of the Bill, on 23 November 2023, the Bill fell and so will not become law.

Transitions is a period of development which can involve changes in every area of life such as housing, employment, social care, education, transport and relationships. We therefore expect some of our overarching and specific consultation proposals, which covers all of these areas and more, to contribute towards improving outcomes for neurodivergent young people and young people with learning disabilities making the transition to adulthood. This also includes our proposals around inclusive communications, mandatory training, independent advocacy, and statutory strategies for learning disabilities and neurodivergence.

Specifically in relation to data, we will consider whether our approach ensures that disaggregated data for neurodivergent young people and young people with learning disabilities is made available to:

(a) enable us to better understand and measure the extent to which these young people are experiencing a positive and supported transition to young adult life;

(b) ensure the visibility of these young people;

(c) help inform the work that will take place under a National Transitions to Adulthood Strategy; and,

(d) help to inform the development of services to meet the needs of these young people when transitioning to adulthood.