Seen, heard, included – Family Fund project report

Providing ways for families to share their experiences, so they can influence change on issues that matter to them is fundamental to our mission.

Family Fund was a partner in a project funded by Scottish Government as part of the Disabled Children and Young People’s advisory group, between November 2022 – March 2023.

The purpose of the project was to:

• Identify and develop tools and methodology to support the meaningful engagement and participation of disabled children and young people with complex needs, whose voices are rarely heard, and their families, and share learning on these approaches.
• Capture what matters to this group disabled children and young people and their families within the context of effective planning and effective support.
• Contribute to the design and development of the National Care Service and the National Transitions to Adulthood Strategy.

We asked families to share their views via interviews in a very remote rural area in March 2023. As well as via our ongoing Family Poll. We collected this data in December 2022 and March 2023.

Summary

Families described valued support in terms of informal support within families, across friendship groups, as well as between peers. A potential role for policy might be enabling and facilitating peer to peer support, within local communities and communities by experience across Scotland.

Effective formal support was also framed in terms of praise for individuals within services. Trusted professionals and organisations and consistent relationships were seen as key, with the child and parents/carers listened to and included. A key marker of effective support was all members of the family having a voice in how support was enabled and facilitated.

Support encompassed health services, social-work and social care, including respite provision, additional support for learning within education, social security benefits, post diagnosis support and peer support.

Identifying themes

Thanks to our Family Poll and interviews, we identified themes for what was working well and points of improvement for the transition to adult services. Only a small number of Family Poll families (around 8%) in Scotland told us that they had or were in the process of, transferring to adult services. Despite the small numbers it was striking how few families felt strongly and consistently positive about their experience of the transition from adult to child services for their child or young person.

Peer support, support from trusted professionals and organisations, and consistent relationships were identified as key facilitators of a good transition experience. A clear pathway for continuation of services families had already been accessing was identified as helpful.
Structural challenges to a good transition between adult and child services were identified- such as service availability in a local area and staffing challenges in local services. Additionally, children’s services were not always mirrored by a service suitable for young people.