Assessing health needs of children with intellectual disabilities: a formative evaluation of a pilot service

Children and adolescents with intellectual disabilities commonly have unmet complex health needs. Their parents often experience barriers in locating and accessing services to assist in diagnosing and managing those needs. In response to this service gap, a pilot Paediatric Assessment Clinic was established under the auspices of a large paediatric hospital, to offer a comprehensive disability health service for children aged 6 to 18 years with intellectual disabilities and complex health needs. A formative evaluation used observations and a survey of key stakeholders, including 13 parents of children with intellectual disabilities, 6 referring clinicians, and 6 specialists to whom cases were referred post-assessment to understand early outcomes of the pilot service. Findings highlighted the benefits of a multidisciplinary, staged approach to health assessment, coupled with a thorough understanding of family, cultural, and psycho-social issues, in providing interdisciplinary and inter-agency service for children with intellectual disabilities. Coordinated management plans between the clinic and disability and specialist health service providers supported parents’ access to services. The evaluation demonstrated the importance of clinical pathways between primary and tertiary health services providers. While demonstrating the intensive resources and engagement processes required to provide an effective multidisciplinary assessment model of care, the evaluation identified limits of the assessment and referral model in ensuring access to needed services.