JCPSLP Vol 18 no 2 July 2016

Administrative burden Six of the 12 studies identified that the administrative process of managing SDF was a source of stress for families. The process was generally reported to be time-consuming and complex (e.g., Prabhakar, Thom, & Johnson, 2010), and resulted in feelings of confusion and frustration (e.g., Johnson et al., 2010). As quoted in Ottman et al. (2009, p. 471): “It is time-consuming finding out about activities and organizing them – the work of a case manager ...” Lack of information and choice Half of the 12 studies reported that while SDF offered families greater flexibility in how to spend funding, there was a very limited number of service options to spend it on. Options were particularly limited if families were based outside of major metropolitan hubs (e.g., Dew et al., 2013). Families also reported they received inadequate information on the options available to them at the time of receiving their funding (e.g., Dew et al. 2013). Four of the 12 studies discussed how the positive outcomes associated with SDF were dependent on contextual variables. These variables include socioeconomic status, minority group status and geographical location, with poorer families, minority groups and families based rurally achieving poorer outcomes using SDF models. As stated by Dew et al. (2013, p. 437): “the trend towards client directed funding [is] a great model [and] I think everyone supports it in principle, providers and consumers alike. In the metropolitan areas [there are] many, many different agencies to refer to, great choice for the consumer … [but] in the real remote areas … there might only be one provider in town.” Discussion Generally, the results from this review are consistent with findings on SDF models on adults with disabilities. Numerous studies on SDF in the United States and United Kingdom have reported that users of these schemes report greater autonomy with SDF when compared to more traditional models of funding (Glendinning et al., 2009; Head & Conroy, 2005; Poll & Duffy, 2008). This review has found that for families with children with disabilities, the gains of autonomy and independence provided by SDF play out within the family dynamic. For caregivers, they are able to “purchase” respite breaks when needed and have greater involvement in the allocation of caregiving assistance. Caregivers are able to select activities that are more tailored to their child and family’s needs. This perception of greater choice and control reportedly leads to other benefits, such as greater socialising, less tension within the family unit, and a higher sense of satisfaction with services. In terms of offering greater choice, SDF models are reported as being moderately successful. However, greater choice has a flipside. There is some evidence to suggest that the more affluent a family is the more they will benefit from greater choice (Johnson, Thom & Prabhakar, 2010). Those families with children with disabilities in more affluent areas were more likely to rate their sense of control with SDF as higher than poorer families (Johnson, Thom, & Prabhakar, 2010). In addition, although providing choice reportedly provided a perception of freedom and autonomy, Schwartz (2004) has cautioned that too many choices can feel like a burden and create a sense of anxiety for families.

A number of studies in this review reported that the added administrative burden of managing choices with SDF was experienced as stressful and time-consuming (Johnson et al., 2010; Ottmann, Laragy, & Haddon, 2009). In the context of this review, not all environments of SDF provided families with “meaningful” choices. For instance, two papers (Dew et al., 2013; Weaver, 2012) reported that families had limited options available to them on what to spend their funding on, and many of these options were already within the scope of what had been previously provided. In one study (Dew et al., 2013), these limitations were largely due to where families lived, with families in rural and remote areas having both limited choice in, and limited access to, disability services. Finally, meaningful choice was also highly influenced by information and the way such information was framed. Two papers (Johnson et al., 2010; Weaver, 2012) found that families of children with disabilities reported a general lack of information when it came to SDF. Caregivers were unsure what options and services were available to them, which impacted negatively on their ability to make the best use of their funding. Conclusions This article presents a systematic review of the literature on self-directed funding and families of children with disabilities. Across all studies the major reported positive themes for families using SDF were a greater sense of flexibility and autonomy, as well as greater social participation including improved relations within the family unit. A smaller number of studies reported additional benefits of gains in health, well-being and employment. Most studies were also fairly consistent in the types of challenges SDF produced for families. These challenges included the potential for greater administrative burden and the stress and time associated with this, a lack of available information in what to choose or how to spend funding, and finally a limited number of services on which to spend funding. However, 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. Across the 12 studies reviewed, there was generally a lack of well-controlled methodological designs. The findings of this review have a number of potential implications for practice. First, the research-based evidence supporting the outcomes of SDF on families of children with disabilities is relatively poor. Further rigorous research into the area is needed, particularly looking at comparing SDF against more traditional forms of service usage for these families. Second, knowledge and information will be an ongoing challenge as SDF models progress. Families will be under more pressure to obtain information themselves on what is available for their child and family as opposed to relying on professional referrals or advice. A question for families and services alike is how individuals will navigate through the plethora of information available in a digital age and which sources they will choose to trust and act upon. Conflict of interest The authors know of no conflict of interest in reporting this work. This work has not been presented at any meetings or conferences. Funding for this work was supported by internal funding at the corresponding author’s institution. Acknowledgements The authors would like to thank Dr Carly Meyer for her time in independently reviewing the papers included in this study.

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JCPSLP Volume 18, Number 2 2016

Journal of Clinical Practice in Speech-Language Pathology