A demographic survey of people who have a disability and complex communication needs in Victoria, Australia

Abstract

In Australia, as in other countries, there is a paucity of accurate demographic information about the number of people with a disability who also have Complex Communication Needs (CCNs). This project, commissioned by the Department of Human Services (DHS) in Victoria, provided epidemiological information for planning healthcare services and ascertaining speech pathology provision, in order to address the needs of people with a disability who also have CCNs. As part of this project, a prevalence study of people with CCNs in Victoria was undertaken and this paper presents and discusses these data. This is an epidemiological survey of people with CCNs in Victoria, Australia. Four DHS regions were surveyed. The population sampled were people with reported CCNs. Demographic data on 3,759 participants (2,786 adults and 973 children) across four DHS regions in Victoria gave an estimated prevalence of 1 in 500 people with CCNs: participants from four diagnostic groups (developmental delay; cerebral palsy; genetic/congenital syndromes; cerebrovascular accident (CVA) or stroke) accounted for 50% of the sample; intellectual disability (ID) occurred as a co-morbidity in 45% of participants; of people with CCNs, 40% also had reported dysphagia (eating and drinking difficulties); the majority of people with CCNs lived at home (47%), in a Community Residential Unit (CRU) (22%), or in a nursing home (21%); less than half (44%) ofpeople with CCNS had received speech pathology services. The estimated prevalence of people with CCNs in this study is higher than in previous studies. A high proportion of people in the state of Victoria, Australia have CCNs; this may also be the case in other Western countries.