JCPSLP Vol 18 no 2 2016

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National Disability Insurance Scheme
JCPSLP Volume 18, Number 2 2016 55
KEYWORDS
CASH FOR CARE
DISABILITY
INDIVIDUAL
BUDGETS
PERSONALISA-
TION
SELF-DIRECTED
FUNDING
THIS ARTICLE
HAS BEEN
PEER-
REVIEWED
Andrea Simpson
(top) and Jacinta
Douglas
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
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.
Self-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.
An examination of the
impact of self-directed
funding models on children
with disabilities
Andrea Simpson and Jacinta Douglas