Abstract
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 language | English (US) |
|---|---|
| Pages (from-to) | 164-174 |
| Number of pages | 11 |
| Journal | Research and Practice in Intellectual and Developmental Disabilities |
| Volume | 4 |
| Issue number | 2 |
| DOIs | |
| State | Published - Jul 3 2017 |
Funding
The clinic commenced in 2012 as part of a three-year pilot project in New South Wales, Australia, under the auspices of a major paediatric hospital. Funding for the pilot was provided by the governing Ministry of Health, as part of a state-wide clinical innovation aimed at improving the health of people with intellectual disabilities through development of service frameworks and greater access to specialist services (New South Wales Ministry of Health, ). The pilot was directed towards school-aged children with intellectual disabilities, who were living in a lower socio-economic and culturally diverse metropolitan region. The target community included a predominance of Vietnamese and Arabic-speaking families, a high proportion of new arrivals and refugees having settled in the State. The central strategy involved the formation of a multidisciplinary team, comprising a developmental paediatrician, paediatric registrar, clinical nurse consultant, and social worker, to provide specialist services, develop new clinical pathways, and contribute to building the capacity of mainstream service providers to meet the health needs of children with intellectual disabilities. The team established the clinic in an accessible community service facility to provide comprehensive health assessments for children and adolescents with intellectual disabilities, aged 6 to 18 years. depicts the clinic model
Keywords
- 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