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

Jacqueline Milne*, Julie K. Johnson, Bruce Lord, Natalie Ong, Gail Tomsic, Natalie Silove

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)164-174
Number of pages11
JournalResearch and Practice in Intellectual and Developmental Disabilities
Issue number2
StatePublished - Jul 3 2017


  • Formative evaluation
  • assessment of complex health needs
  • clinical pathways, children with intellectual disabilities
  • cultural diversity
  • interagency approach
  • multidisciplinary
  • vulnerable population

ASJC Scopus subject areas

  • Clinical Neurology
  • Developmental Neuroscience
  • Neurology
  • Rehabilitation

Fingerprint Dive into the research topics of 'Assessing health needs of children with intellectual disabilities: a formative evaluation of a pilot service'. Together they form a unique fingerprint.

Cite this