Though our understanding of the impact of disabilities/complex additional needs on children/young people has developed over the years, there continues to be limited understanding of the impact on the whole family.
This evaluation focused on a local study completed across Conwy, which included a focus on a survey for professionals (n=23) and parents/carers (n=5) to explore their attitudes and views on the role of the Family Disability Worker (FDW). Following this, a series of semi-structured interviews were completed in order to gather in-depth information from professionals (n=23) and parents/carers (n=3). The aim of the interviews was to explore
the experiences of participants of supporting the needs of a child(ren) with a disability or additional needs. This included an exploration of their views on working with the FDW, including their perspectives on the uses and limitations of this role. The analysis identified several key points: firstly, that a delay in a specialist neurodevelopment diagnosis has a significant impact on the whole family, which results in families experiencing the impact of significant behaviours of concerns over a prolonged period of time; secondly, the sustained
impact of addressing this behaviour results in families feeling social excluded and isolated; thirdly, these family often suffer the impact of poor housing, overcrowding and poverty and finally, the overall positive impact of robust multi-agency working on the well-being outcomes for the whole family.
The findings have relevance for policy and practice and contribute to an emerging field of literature exploring the nature of disability and additional needs on families who are often perceived to be the ‘missing middle’. The findings suggest the importance of preventative services to support the needs of families with children who have a disability or additional needs. A key finding is the overwhelming agreement on a multi-agency basis and across families of the importance of the contribution offered by the FDW role. This finding suggests
that any future developments around enhancing this role would be a welcome additional to the multi-agency services supporting families across Conwy.