Rethinking Disability Assessment in Kenya: Towards a Participatory Model for Parents and Caregivers

Abstract

Disability assessment in Kenya remains largely grounded in a reductionist medical model that prioritises diagnosis over the functional abilities of persons with disabilities. Although Kenya has progressive legislation promoting inclusive assessment practices, meaningful participation of parents and caregivers remains limited due to inadequate legal enforcement, professional gatekeeping, bureaucratic inefficiencies, inconsistent assessment procedures, and weak accountability. These systemic barriers restrict equitable access to disability certification, educational placement, rehabilitation services, and social protection programmes, particularly for vulnerable children and their families. Consequently, parents and caregivers, despite possessing essential knowledge of a child's daily functioning, are excluded from assessment processes, reducing the accuracy and comprehensiveness of assessment outcomes and limiting the delivery of sound interventions. This study employed a mixed-methods design, drawing on a qualitative phenomenological approach using semi-structured in-depth interviews and open-ended survey responses. Purposive sampling identified  institutional stakeholders, while snowball sampling expanded participation to parents, caregivers, special needs educators, allied health professionals, and social workers across Nairobi, Kisumu and Meru counties. Data were analysed thematically to explore participants' experiences and perceptions of disability assessment. The findings identified four major categories of challenges: information gaps, unequal professional–caregiver power relations, socio-cultural stigma and institutional deficiencies. Despite these barriers, participants across stakeholder groups consistently agreed that active caregiver participation enhances early identification, improves service coordination, strengthens educational planning, and promotes inclusive assessment practices. The study proposes the Informed Participatory Model (IPM), a collaborative framework designed to bridge the policy implementation gap by institutionalising meaningful caregiver participation, promoting transparent, equitable and family-centred disability assessment.