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JCPSLP
Volume 18, Number 2 2016
Journal of Clinical Practice in Speech-Language Pathology
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.
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.