National Transitions to Adulthood Strategy for young disabled people: child rights and wellbeing impact assessment

3. Summary of the evidence gathered

Existing research/reports/policy expertise

The following statistics show the need for the National Transitions to Adulthood Strategy for Young Disabled People:

• Statistical Evidence: Around 42% of households in Scotland contain at least one person who is long-term sick or disabled. This figure covers all household members, including children. (Source: Scottish Household Survey, 2016)
• Statistical Evidence: In 2022, the proportion of people in Scotland with a long-term activity-limiting health problem or disability was 24.1%, an increase of 4% since the 2011 census. (Source: Scottish Census, 2022).
• In 2022, around 1 in 7 people aged 16‑34 (14.4%) had a health problem or disability limiting their day‑to‑day activities. (Source: 2022 Census).
• Statistical Evidence: In 2012, 28 per cent of men and 35 per cent of women in Scotland reported a limiting long-term condition or disability. (Source: Scottish Health Survey 2012)
• Statistical Evidence: 10% of children had a long-term limiting mental or physical health condition or disability in 2017. In 2017, 10% of girls were disabled and 11% of boys in Scotland were disabled. (Source: Scottish Health Survey 2021)
• Statistical Evidence: In 2017-2021 combined, the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS) mean score for children aged 13-15 was similar to that recorded in previous years (50.8 compared to 51.0 in 2012-2015 combined). (Source: Scottish Health Survey 2021)

Literature Review

In February 2023 The Transitions to adulthood for disabled young people: literature review was published. This research looked at the main challenges and experiences faced by young disabled people, looking at Scottish, UK and international evidence. The research also included information on how to best support young disabled people as they become adults.

Strategic Working Group

We formed an External Strategic Working Group to support the development of the Strategy. This group includes parent carers, health, social care, education, Local Authorities and the third sector members.

The External Strategic Working Group brought together those who play a key role in transitions to draft the Strategy. Now it is published the group are looking to drive completion of the Strategy’s actions. The group met monthly between March 2023 and September 2024 co-designing the Strategy and feeding into engagement. Meeting papers are published on the Gov.scot website.

Cross Policy Working Group

A cross policy working group was set up in June 2022 to join up ongoing work across Scottish Government which contributes to helping young disabled people as they transition to young adult life. This group has members working in key areas including but not limited to health, social work and education. The group continues to provide feedback as we develop the Strategy, and has shared information on the Strategy with their own networks.

Together, these groups worked to develop the Strategy, and will support its delivery.

DCYPAG Engagement Sub-Group

The Disabled Children and Young People’s Advisory Group (DCYPAG) was established in 2012. The group is independent but is facilitated by and receives secretariat support from the Supporting Disabled Children and Young People Unit, who also act as intermediaries between this Group and wider SG colleagues for sharing information.

The agreed aims of the group are the following:

• To advise Scottish Government on issues relevant to the development and implementation of policy having an impact on disabled children, young people and their families.
• To promote and facilitate on-going engagement and participation of disabled children, young people and their families in the development and implementation of relevant legislation and policies.
• To actively promote links and shared working with other relevant advisory groups and organisations and develop networks to ensure that the needs of disabled children and young people and their families are taken into account when developing policy and services.

In December 2021, a sub-group of DCYPAG was established to consider in more detailed terms how disabled children and young people with complex support needs, whose voices are seldom heard, should be engaged with to support the development of the National Care Service (NCS) and the National Transitions to Adulthood Strategy for young disabled people. The sub-group is comprised of five third sector organisations:

• The Health and Social Care Alliance (The ALLIANCE)
• Contact
• Promoting a More Inclusive Society (PAMIS)
• Down’s Syndrome Scotland
• Family Fund

The sub group was awarded funding to:

• identify and develop tools and methodology to support the meaningful engagement and participation of disabled children and young people whose needs are complex and whose voices are rarely heard, and their families; and share learning on these approaches; and
• to capture what matters to this cohort of disabled young people within the context of effective planning and effective support, in order to contribute to the design and development of the National Care Service and the Strategy.

The delivery partners made up of Contact, Down’s Syndrome Scotland, Family Fund and PAMIS carried out the engagement activities with groups of young disabled people and their families. The ALLIANCE provided the administration and co-ordination element to the project.

In August 2023, the resources and the learning report “Seen Heard Included” were published on the Health and Social Care Alliance Scotland website.

Consultation/feedback from stakeholders

Engagement Sessions and Dialogue

• Through the work of the external strategic working group and the cross policy working group a Statement of Intent was published on 30 September 2023. The Statement of Intent explained what we have heard the Strategy should focus on to make transitions to adulthood better. This included the following areas to focus on for the Strategy:
  • Choice, Control and Empowerment for the Young Person
  • High Quality Transitions Practices
  • Co-ordination across the wider landscape of policy and legislation
• A questionnaire was published alongside the Statement of Intent to gain feedback on whether these were the right priorities for the Strategy. We also held a number of events aimed at young disabled people and their families and carers to gain more feedback. The questionnaire closed on 30 November 2023, and analysis on feedback received was published on 31 May 2024.
• The feedback on the Statement of Intent engagement with stakeholders and work through the strategic working groups show that the current situation with transitions must change. The analysis report identified recurring themes that arose across responses to multiple questions. These four themes were:
  • Role of parents/carers - the role of parents/carers as key advocates and partners in their young person’s transition to adulthood was highlighted, and some respondents felt that their role should be strengthened within the strategy, as well as ensuring parents/carers’ own support needs are considered alongside the support needs of their young person.
  • Access to services and support – respondents felt that delivering on the ambition of the statement of intent would be dependent on disabled young people being able to access suitable support and services. Whilst some respondents acknowledged they could have received better support if information had been provided to them, it was generally felt there is not enough choice or availability of support and options across Scotland for disabled young people to transition to.
  • Young people with complex needs - Some respondents felt that the ambition of the statement of intent did not sufficiently reflect the aspiration or needs of young people with ‘complex needs’, although no fixed definition of the term was apparent.
  • Transitions between children’s and adult’s services - Some respondents highlighted the challenges presented by the transitions between children’s and adult services, particularly in relation to health transitions. Some described a sharp drop – and in some cases gaps – in support, and reflected on challenges impeding smooth transitions such as securing adult service representation during transitions planning.
• The feedback on the Statement of Intent has been used to help draft of the Strategy.
• Further engagement was held online and in-person in May- July 2024 to help agree actions for the Strategy. Alongside, this, Dialogue - an online tool – was utilised to allow professionals working with young disabled people and their families to contribute their ideas for the Strategy.

Young People’s Engagement

We are working with groups of young disabled people to help write the Strategy:

• The DIVEergent Influencers – Association for Real Change (ARC) Scotland
• Inclusion Ambassadors – Children in Scotland
• Young Ambassadors – Independent Living Fund (ILF) Scotland
• Scottish Youth Parliament (SYP)
• Glasgow Disability Alliance (GDA)
• Young Carers Festival (hosted by Carers Trust Scotland)

These groups supported us to make sure the voice of young disabled people is at the heart of the Strategy.

The Divergent Influencers (DIs) are a group of young people who are supported by ARC Scotland’s Scottish Transitions Forum. In March 2022, we provided additional funding for the DIs to host an event at Dynamic Earth to share their report, Hear our Voices, Respect our Choices, which shared the things young people feel are important in order to have a positive transition, and identified where they were most unhappy or felt most supported. This included availability of support, being asked questions such as ‘what is your dream/goal?’, and being supported to become more independent by building confidence in social and everyday situations.

In October 2023 and August 2024, we provided grant funding to GDA to hold events aimed at young disabled people and their parents/carers to support development of the Strategy.

These events, which were hosted by GDA and young disabled people themselves, focused on:

• Looking at what challenges might make good transitions more difficult.
• Supporting young disabled people and parents/carers to discuss what might help overcome these challenges.
• Providing examples of what is working to make transitions better, including the priorities for the Strategy.
• Suggesting actions for the Strategy which could help improve transitions for young disabled people.

In October 2023 and June 2024, we were successful in our bids to hold workshops at the Scottish Youth Parliament Autumn Sitting and Summer Sitting events. These events were developed in partnership with SYP and hosted by members of Scottish Youth Parliament. MSYPs attending the workshops were asked to feedback on the statement of intent, and to discuss what might help to make transitions better, including the priorities for the Strategy.

In August 2023 and August 2024, we hosted a stall at the Young Carers Festival. Young Carers were asked to share their experience of caring for a disabled sibling, and to share their views on the Strategy. We also commissioned Glasgow Disability Alliance (GDA) to host an event with young people in August 2024.