Nothing About Us Without Us in the First 1000 Days: Developing Inclusive Early Years Support With Disabled Families.

Abstract

This article reports on co-design workshops with 11 disabled families ('co-designers') as part of developing a 'universal' (for all families) early years programme in health and social care. The programme aims to enhance caregiver and infant well-being. Given well-documented limitations of existing support for disabled families, ensuring disability inclusion from the outset was essential. The term 'disabled families' refers to 2 configurations: families where a parent is disabled and families of disabled children. Intensive workshops employed barrier mapping and solution generation activities. Thematic analysis revealed four domains where co-designers identified exclusionary practices and proposed inclusive alternatives: physical and environmental accessibility, programme design flexibility, content inclusivity and professional practice and empowerment. Co-designers demonstrated how institutional ableism operates through inaccessible venues, rigid attendance policies, normative developmental milestones and dismissal of parental expertise. Solutions moved beyond surface accommodations towards fundamental transformation. Co-designers proposed accessible venues with sensory considerations, flexible attendance, strength-based content, comprehensive facilitator training validating experiential knowledge and enabled peer support. This study demonstrates that meaningful inclusion requires dismantling rather than retrofitting exclusionary systems. Co-designers' insights provide both structural critique of institutional ableism and practical design principles for inclusive provision, showing how participatory approaches can generate alternative possibilities for equitable family support.