JCPSLP Vol 18 no 2 July 2016

National Disability Insurance Scheme

An examination of the impact of self-directed funding models on children with disabilities Andrea Simpson and Jacinta Douglas

In this paper, we report the results of a systematic review to examine self-directed funding (SDF) models specifically in the context of families with children with disabilities. The review identified 12 studies of relevance to the question of interest. The overall quality of the studies reviewed was relatively poor as rated by quality appraisal tools, with all papers receiving scores in the low-to-moderate range. However, papers were fairly consistent in reporting that SDF schemes provided families with a greater sense of flexibility and autonomy, as well as greater social participation. The potential for greater administrative burden, a lack of available information in what to choose or how to spend funding, and a limited number of services on which to spend funding were also major themes. However, despite the popularity of SDF models, the research-based evidence supporting the usage of these models on families of children with disabilities has not yet been established. S elf-directed funding (SDF) models for persons with disabilities refers to individuals being assigned responsibility for managing a personalised support package. The recent implementation of the National Disability Insurance Scheme (NDIS) in Australia is one example of a self-directed approach to disability funding. By far, the biggest advantages of SDF programs appear to be that they provide greater choice and greater flexibility. The autonomy in deciding what support services are needed, when they are needed, how often they are needed, as well as the ability to select and hire personal carers have been frequently cited as reasons for the high levels of satisfaction with SDF models (Mahoney, Desmond, Simon-Rusinowitz, Loughlin, & Squillace, 2002). Although outcomes for SDF models have been fairly comprehensively researched in adults (Caldwell & Heller, 2003; Glendinning et al., 2009; Glendinning et al., 2008; Heller, Miller, & Hsieh, 1999), the question of how self-directed funding impacts on children and young people with disabilities has been largely overlooked.

The authors were interested in what, if any, impact SDF has had on the way families with children with disabilities functioned. A systematic review of the published literature on SDF in families of children with disabilities was carried out with particular reference given to outcome-based, rather than descriptive studies. The review attempted to answer the following research questions: • What is the impact of SDF support models on families with children with disabilities? and • What is the research-based evidence that underpins SDF support models for families with children with disabilities? The results of the review together with an analysis of findings are reported below. Method A systematic literature search was conducted using the following databases: Medline (Ovid), CINAHL (EBSCO), Proquest, the authors’ university’s library search engine, Google, and Google Scholar. A hand search of reference lists from articles of interest was also completed. Exact search terms entered into the databases included the following: • Concept 1: Population: “children with disabilit*” OR “child* with a disabilit*” OR “disabled child*” OR “child* with special needs” OR “child* with complex needs” OR “child* with additional needs” OR “handicapped child*” AND • Concept 2: Intervention: “individual budget*” OR “self- managed fund*” OR “self-directed support*” OR “direct funding” OR “individual* fund*” OR personali?ation OR “personal budget*” OR “cash for care” OR individuali?ation OR “person cent* care” OR “person cent* plan*” In order to be included in the review, papers had to meet the following criteria: • the paper included families or caregivers of dependent children or young adults with disabilities with the age of the children or young adults in the study stated as having a mean age of under 21 years at the time of publication; • the full article was available in English; and • the paper described at least one impact or outcome of SDF models on families of children or young adults with disabilities. Table 1 shows the databases searched together with results. Potential studies were appraised for eligibility by the first author. A second reviewer examined the abstracts of

KEYWORDS CASH FOR CARE DISABILITY INDIVIDUAL BUDGETS PERSONALISA- TION SELF-DIRECTED FUNDING THIS ARTICLE HAS BEEN PEER- REVIEWED

Andrea Simpson (top) and Jacinta Douglas

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JCPSLP Volume 18, Number 2 2016

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