National Transitions to Adulthood Strategy for young disabled people: islands communities impact assessment

3. Consultation and Engagement

To ensure the Strategy was shaped by the voices and experiences of those it affects most, a wide range of consultation and engagement activities were undertaken with disabled young people, their families, and key stakeholders. Information gathered during this process includes:

3.1 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.

3.2 DCYPAG Engagement Sub-Group

The Disabled Children and Young People’s Advisory Group (DCYPAG) was established in 2012. The group was independent and was facilitated by and received secretariat support from the Supporting Disabled Children and Young People Unit, who also acted as intermediaries between this Group and wider SG colleagues for sharing information. Secretariat support by Scottish Government was stopped in 2024.

The aims of the group are:

• 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 National Transitions to Adulthood Strategy.
• The delivery partners made up of Contact, Down’s Syndrome Scotland, Family Fund and PAMIS carried out the engagement activities. 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.

3.3 Young People’s Engagement

We have also been working with groups of young disabled people to help write the Strategy. They are:

• 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)

We have worked with these groups to make sure that 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 disabled young 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 from across Scotland attended the workshops and were asked to feedback on the statement of intent, and to discuss what might help to make transitions better, including the priorities for the National Transitions to Adulthood Strategy.

In August 2023 and August 2024, we hosted a stall at the Young Carers Festival. Young Carers from across Scotland were asked to share their experience of caring for a disabled sibling, and to share their views on the Strategy.

3.4 Consultation and Timescales

Engagement took place over the following periods to support development of the strategy:

• Testing and engagement on the Statement of Intent: November – December 2023
• Wider engagement: May – August 2024

On 30 September the statement of intent was published setting out a proposed scope, vision, and priorities for the Strategy. This was co-developed with the Strategic Working Group and Young Disabled People themselves.

In addition to the statement of intent, an online survey was published to gather feedback. Responses were analysed and published on 31 May 2024. Participants included those from rural areas, who provided insights on opportunities for change and challenges around availability of facilities for young disabled people living in island communities.

Further engagement was held both online and in-person between May - August 2024 to help agree actions for the Strategy. Alongside this, Dialogue - an online tool - was utilised to allow professionals working with disabled young people and their families to contribute their ideas for the Strategy. This engagement reached over 500 contributions.