Parent and carer perspectives on specialist speech and language therapy assessments for children and young people with Down syndrome

Children and young people with Down syndrome (DS) exhibit distinct speech and language profiles and are frequently referred to speech and language therapy (SALT) services. These may lack specialised DS knowledge, potentially bridged with a SALT assessment by DS specialists. However, these assessments are not universally available, and this study aimed to explore the perspectives of parents and carers who underwent such an assessment; specifically, their motivation, perception of the outcomes and the broader impact. A mixed-methods study was conducted with 35 parents and carers completing an online questionnaire. Challenges with SALT provision and DS-specific knowledge of local services were reported as motivating factors in seeking a specialist assessment, often conveying the personal toll and cost of obtaining these. Participants reported that the assessment facilitated their understanding of the child's SALT needs, reflecting empowerment. Positive outcomes post-assessment were reported, reflected in the significant difference between satisfaction levels with the Education, Health and Care Plan. However, difficulties in translating the recommendations into practical support were raised. Future studies should include the perspectives of professionals involved to provide a more comprehensive picture of the role and impact of specialist assessments.