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The South Australian trial site
This chapter presents the committee's evidence on the achievements and
challenges facing the National Disability Insurance Scheme (NDIS) in the South
Australian trial site.
The public hearings
The committee held public hearings in Adelaide on 7 and 8 May 2014. On
7 May, the committee took evidence from 15 participants and carers and 8 individuals
representing service providers. On 8 May, South Australian Department for
Communities and Social Inclusion and South Australian National Disability
Insurance Agency (NDIA) officials gave evidence to the committee. While the
South Australian trial presented similar broad themes as the other three trial
sites, it raised specific issues regarding the transitioning of children aged 0–5
years into the Scheme.
Progress of the South Australian trial site
Table 5.1 provides some key statistics relating to the progress of the
South Australian trial site. The table shows the progress of transitioning
participants against the bilateral agreement between the Commonwealth and South
Australian governments. As of 31 March 2014, 1152 participants had been found
eligible to access the Scheme and 979 participants had approved plans.
This represents a 62 per cent transition approval rating against the agreed
bilateral figure for the first year's intake in 2013–14 of 1565 participants.
Table 5.1: Key statistics of the South Australian site (after 9 months)
of participants in bilateral agreement
of participants with plans, 31 March
days from access request to plan approval
time: application–commencement of services
mainstream services (% of total)
Source: National Disability
Insurance Agency, Quarterly Report to COAG Disability Reform Council,
31 March 2014.
Transition to the NDIS in South
This section discusses the transitional arrangements in South Australia
for the 2014-15 cohort. Table 5.2 below shows the phasing schedule for the
South Australian trial site. It displays the process through which the South
Australian Department for Communities and Social Inclusion (DCSI) intends to
transition clients into the NDIS.
Table 5.2: Transition arrangements in the South Australian trial site
Source: South Australia NDIS
bilateral agreement. Note: All yearly intake number are cumulative.
The South Australian trial, like the Tasmanian trial, opted for an
aged-based introduction to the NDIS. South Australia's first priority has been
to transition children under the age of six—birth to five years old—bringing
them in quarter by quarter, age cohort by age cohort. From 1 July 2014 the
trial started transitioning children aged
6–13 years. Children aged 14 will be included from 2015.
As shown in Table 5.2, the next intake of participants will bring in an
additional 3123 in 2014–15 from 1 July 2014 expanding the South Australian
trial site to 4688, nearly triple the 2013–14 number of 1565. In 2015, a
further 397 participants aged 14 will enter the trial site.
As all participants in this trial site are very young children, all
responses have been provided by parents or carers and for the purpose of this
chapter they will be referred to as carers.
Achievements of the South Australian trial site to date
As in the other trial sites, the committee heard from the National
Disability Insurance Agency (NDIA) South Australian trial site manager, Ms
Meryl Zweck, that there have already been some important achievements in the
site. These are:
participants' positive views of their planning process;
significant progress in approving plans;
new trial of pre planning discussions;
regional and remote support;
Indigenous disability and employment opportunities; and
participants self-managing plans.
Participants' positive views of
their planning process
The committee notes that Table 5.3 shows according to the NDIA survey
results, 89 per cent of South Australian respondents stated that their
experience with the planning process was either 'very good' or 'good'. The
committee emphasises that all survey work data should be transparent and
accurately reported. In chapter 6 of this report, the committee recommends the
need for greater clarity on how NDIA surveys are conducted and compiled.
The committee heard positive feedback from Mrs Dollard who recounted her
experiences with her child's first NDIS plan at the South Australian trial
Our first planning meeting was fantastic. It all happened in
our home; my husband was there and my son was there. We had about two sessions
with our planner. We had time to go through our goals with her really
carefully. She listened to us. She was fantastic. At no point did I feel
confused or anything. So that was a really great process for us. The plan came
through and we were very happy with it.
Table 5.3—Participant feedback
Overall, how would you rate your experience with the planning process
Source: National Disability
Insurance Agency, document received 8 July 2014.
Significant progress in approving
Ms Zweck highlighted the South Australian trial site achievements to
date, including processing the initial backlog of transitioning participants,
The first nine months of the scheme have been both rewarding
and challenging...Third quarter data has been released and demonstrates sound
performance, with significant progress and plan approvals, including addressing
the backlog that had developed in the first six months. For South Australia
that means 89 per cent achieved against the bilateral agreement*. But probably
more importantly, 979 children have now had plans approved in South Australia...
Likewise, our interactions with service providers facilitate
collaborative relationships and continual learning and improvements. This work
is underpinned by a strong, pragmatic working relationship with the SA
government. Progress with the scheme in South Australia has been sound.
NDIA noted that the number of days between when an access request for a
plan is made by a participant and when supports are approved in South Australia
is 51 days just below the average of 52 days across all trial sites.
Further, Ms Zweck noted that in South Australia:
The majority of participants and their families are accessing
the scheme under early intervention provisions. Transdisciplinary packages are
increasingly being funded to support families to enable flexibility and
recognise the frequently changing needs of young children, and access and
information is being provided statewide through a network of metropolitan and
regionally based local area coordinators. The scheme is ensuring that parents
are linked into local mainstream supports and is strengthening the sustainability
of supports provided by families and carers. There are early indications of
providers expanding their services and developing innovative responses to
enable choice for participants.
New trial pre-planning discussions
As part of the NDIA's facilitation of information, the NDIA informed the
committee that it had begun trialling pre-planning workshop discussions
designed to assist and inform carers and participants about the planning
[O]ur local area coordinators and regional areas meet with
parents to assist them with preplanning activities and connection to the
mainstream and community supports.
Regional and remote support
The committee also heard evidence about how the Agency was engaging with
people in regional and remote communities who will be accessing the Scheme:
In regional areas, we recognise the uniqueness of each region
and the challenges of providing funded supports across a range of activities to
a relatively small number of children in a vast geographical area.
While seeking individual responses for participants, we are
also working on ways to facilitate increased options for families and service
provision. In remote areas, we are working closely with NPY Women's Council and
the Tullawon Health Service through the KW Health Alliance to develop local
solutions and culturally appropriate responses informed by community members.
We are ensuring that we incorporate their expertise and views into how we can
design our processes and communication materials to address these challenges.
Indigenous disability support and
As part of the Agency's engagement in regional and remote communities,
Ms Zweck elaborated on NDIA's work with Indigenous communities and with
the national peak disability organisation representing Aboriginal people with
disabilities, First Peoples Disability Network:
We continue to work with other government agencies and their
capabilities to ensure that processes are sustainable and scalable. First
Peoples Disability Network support us in this engagement and in facilitating
NDIA access to community members. Insight from these projects has been very
valuable, and we are exploring how we may formalise our input from these
agencies on an ongoing basis.
Two additional areas of focus include how we effectively
communicate and share information about the scheme with Indigenous and
culturally and linguistically diverse groups, including designing communication
and engagement strategies. Secondly, in recruitment activities, we are looking
to see how we can create innovative employment opportunities to maximise
engagement with Indigenous groups.
Participants self-managing plans
The committee notes that South Australia has the highest rate of
self-management of plans out of the four trial sites at 5 per cent of total
plans approved with 12 per cent undertaking a combination of agency managed and
The committee commends the early progress that the South Australian trial site
has made in promoting the option of self-managing plans. In keeping with the
Scheme's intent to provide greater choice and flexibility, the committee
considers that there needs to be greater support and encouragement by the NDIA
for participants to gain the necessary skills to become self-managers of their
plans and that this should be a key objective for every site.
Table 5.4: NDIS plan management arrangement
Source: National Disability
Insurance Agency, Quarterly Report to COAG Disability Reform Council, 31
March 2014, p. 18.
The committee heard that self-management of plans has had a greater
uptake in South Australia primarily to ensure that carers are able to manage
the allotted funds under their child's transdisciplinary plan. Mrs Michaela
Dollard who self manages her three year old son, Harry's package stated that:
I self-manage and have always self-managed, so again I was
happy with that process, because it allowed me to spend my funding where I
could. It also allowed me to try out new therapists and to access private
therapy on recommendations from other parents and whomever. That was good. It
was flexible and I was really happy with that.
Challenges for the South Australian trial site to date
As with the other trial sites, the committee heard responses from
stakeholders about areas and processes that represent challenges in the
implementation of the NDIS. This section identifies some of the challenges that
have faced the implementation of NDIS in progressing with the South Australian
trial. The committee heard evidence that identified the following challenges in
the South Australian trial site:
transition challenges in South Australia;
the culture within the NDIA;
NDIA complaints and reviews;
communications from the NDIA;
the planning and assessment process;
support needs assessment tool;
additions to transdisciplinary packages;
providers views of transdisciplinary packages;
participants using fund managers;
the backdating of plans; and
the role of advocacy.
South Australian trial site manager, Ms Zweck, gave the committee a
detailed account of the challenges facing the South Australian trial site to
date. Ms Zweck acknowledged and articulated the array of individual challenges
stating that the organisation is constantly working to improve its operations:
We are a learning organisation and in this spirit acknowledge
that there are refinements and improvements that can be made to the processes
we use to implement the scheme. For example, clearer operational guidelines in
regard to 'reasonable and necessary' have improved the capacity of staff to
communicate their decisions with families and service providers.
Ms Zweck also noted a number of site specific issues that have been
particularly challenging for the NDIA staff:
...[T]hings specific to South Australia: there is a need for an
increased definition for developmental delay and eligibility in access
requirements; implementation of the transdisciplinary approach and the role of
the primary service provider still needs to be explored and trialled; travel
and transport costs to deliver a service in regional and remote areas need to
be clarified; there is a need to implement strategies to ensure the continued
contribution of donors in terms of fundraising; the funding for access to
tier 2 supports can be an issue; and there are concerns about the impact of the
increased numbers of participants and year 2 phasing.
Transition challenges in South
As highlighted above and in paragraph 5.5, a significant challenge in
the South Australian trial site is the ability of the NDIA and the South
Australian Government to process the increased intake of participants into the
Scheme. Under the South Australian bilateral agreement, 4688 participants are
scheduled to join the South Australian trial site by the end of 2014/15
(estimated cumulative total including 2013/2014 intake). This requires the
NDIA to process twice as many participants in 2014–15 as it did in 2013–14.
This will effectively triple the number of participants in the South Australian
trial site with an additional 397 participants entering in 2015.
Both the Executive Director for Disability SA, DCSI, Mr David Caudrey, and
the NDIA South Australian trial site manager, Ms Meryl Zweck, shared their
concerns with the committee regarding the capacity and readiness of the trial
site to process this next cohort starting from 1 July 2014. Mr Caudrey states
that in regard to 2014:
We are already beginning to be concerned, both in terms of
our processes and NDIA processes, that in year two  we are...working at
double the rate because we are bringing in children from six through to 13.
Ms Zweck also told the committee that in regard to the 2014 intake:
[Y]ear 2  additional participant numbers remain
unresolved and expansion issues for those aged six to 13 will be considerable;
and our workforce needs to be developed and implemented, particularly in the
remote and regional areas...We expect to see the vast majority of participants in
year 2  of the scheme, and the challenge for our staff will be to
continue to provide a high level of responsive service to our current
participants and providers while substantially increasing the number of
participants who are seeking access to the scheme.
Ms Zweck also said that NDIA was working to address similar
transitioning issues for remote Indigenous communities in Year 2:
[R]emote Aboriginal communities; year 2  additional
participant numbers remain unresolved and expansion issues for those aged six
to 13 will be considerable; and our workforce needs to be developed and
implemented, particularly in the remote and regional areas.
The committee is cognisant that all sites will face increases in the
number of participants requiring transition to the Scheme as it approaches full
scheme. This will impact considerably on both the capacity of the jurisdiction
and the NDIA to process the expected numbers. The South Australian government
has highlighted this concern with the size of the current transitioning cohort
and with the future cohorts commencing in 2016.
The committee understands that this
issue is still being dealt with through Council of Australian Governments
(COAG) and phasing arrangements for 2014/15 are yet to be finalised.
The culture within the NDIA
In understanding the culture of the Agency and how this was operating,
the committee heard evidence from a number of carers about their experiences
with the NDIA planners and about the culture in the Agency. Although some
carers were happy, the committee heard examples where carers encountered both
welcoming and unwelcoming, sometimes rude and terse behaviour during
interactions with NDIA staff. For example, Ms Diana Ots, mother of an NDIS
participant, stated that she found that the staff appeared to have become very
I am concerned about comments from planners that lead me to
believe that an unhealthy culture has formed in certain NDIA offices. Comments
I have heard are along the lines of: 'Other participants are asking for too
much, which is why we are cutting back'. Because participants are talking to
each other, they are finding out what they did not get and requesting reviews.
This attitude alienates participants from each other and creates an 'us versus
them' environment. I feel that the total cost of the plan should be irrelevant
to the planner; it leads to judgement and pressure.
Ms Mia Lester, mother of a two year old with multiple disabilities including
blindness, recounted a similar tone from her first planning interview:
The process, I felt, was subjective and not factual. It was
not based on all of the medical reports that I had provided prior to the
meeting...The planner was rude. She was like talking to a machine. Her responses
were just really well rehearsed.
In examining some of these accounts, the committee spoke with the South
Australian NDIA management team about the planners and the culture within the
South Australian trial site. The committee enquired as to what the NDIA was
doing to create a positive culture with their planners.
Ms Zweck explained that there are extensive induction training processes
for new staff:
[A]s part of staff's commencement with us they took quite
extensive induction training, which included those aspects of the value of the
agency and the culture of the agency and reinforced what that would look like
to them. The sorts of things that our planners would say to us that, I suppose,
reinforce what the culture and the values are do not appear to be reflected in
the perceptions or the experiences of what the families are indicating to us.
So one is that sort of training approach. The other thing that we do is that we
have meetings where I stand up, I talk about the vision and the culture of the
agency, and I talk about that with all staff. That is then reinforced through
my directors of service delivery, who work very closely with the administration
staff, the planning staff and also the local area coordinators. We are
continuing to message that...
...When we actually have feedback from participants, as I said
before, we will actually have a discussion about that at our management team.
We will talk about, 'Does that mean we need change processes in some way?
In the committee's meeting with the NDIA on 8 July 2104, the NDIA Chief
Executive Officer, Mr Bowen informed the committee that the Agency would be
undertaking a 'culture audit' of its services that would seek to address and
capture feedback on all Agency interactions with its stakeholders. In addition,
NDIA stated that it was implementing a further feedback mechanism in each trial
site of conducting regular local participation forums.
The committee also heard from the Operations General Manager, Ms Liz
Cairns who told the committee that the NDIA's quality framework is expanding to
cover more qualitative data and KPIs on the Agency's interactions with
We have had a quality framework in place since July last
year. I have just recruited a new quality and innovation team that is taking
the existing framework, which I think has provided us with some useful
information to date, but clearly needs to be expanded, both in response to this
process and also in response to where we are in our organisation.
So it will catch all the possible sources of information,
including the qualitative customer satisfaction engagement that we need to do
in addition to the survey. It will look at complaints. It will drill into
records in terms of timeliness of responses. Then run we will run that through
a continuous improvement process. The outcome of that will effectively be a
recourse analysis: what is the change; what is the reason for a particular
issue or deficit; is it about an individual staff member; is it broader than that;
is it a training issue; does it need to be dealt with by way of a process
The other thing we are introducing is a set of KPIs for the
operation staff, which will talk to the key deliverables of the scheme—for
example, client outcomes being achieved and scheme sustainability. But in
response to this particular issue we have two. One is around timeliness;
particular time frames around responsiveness to phone calls, emails and written
communication. And an aspect of the KPI for each individual will be their score
against our behaviours and values.
NDIA complaints and reviews
In providing the committee with information about the achievements of
the South Australian trial site, NDIA trial site manager, Ms Zweck noted that
the trial site had received:
...37 complaints and 18 requests for a review of decision. An
application for review has been lodged with the Administrative Appeals
In reference to the complaints, the Ms Zweck stated that:
These complaints [the above quote] largely relate to funded
supports, particularly the level of reasonable and necessary supports included
in plans, the implementation of the transdisciplinary approaches and planning
outcomes. Many of the latter arise from confusion with the definition of the
no-disadvantage provisions agreed between governments. While many have
interpreted this as ensuring maintenance of the dollar value of specific items,
the agency has attempted to retain a focus on maintaining and/or increasing the
overall outcomes for the person in the context of the goals of the scheme and
as required under the intergovernmental agreement.
Communications from the NDIA
A concern that was consistently raised
with the committee by participants and providers who participated in the
hearing in Adelaide is the complexity of the Scheme and lack of clarity of
information provided by the Agency. The committee notes that others not present
at the hearing may not have had the same experiences.
Mr Philip Martin, Chief Executive
Officer, Muscular Dystrophy Association noted that:
From our point of view, regrettably, the vagaries of the
political system and the inconsistency of the parameters for the trial sites
have created circumstances where a lot of clients are very confused about when
they can get something and what they can get. It was initially in fact
overpromised and at this point under-delivered. Many of our direct service
workers and our clients are overwhelmed by the volume of changing information
and the nature of the information. We would ask the agency to consider a series
of well thought through, clearly articulated information to families and people
with disability... We are getting a lot of information directly from the agency
about what is happening in the rollout, but it is without context of what may
be available within the new system.
Evidence has also been brought to the committee's attention of the
constant changing of documents on the NDIA website with little version control
to identify whether a particular document is current or not. A recent example
brought to the committee's attention, was the NDIS planning guide and
workbook that one day appeared with a new section, Step 4 Approve your
...that your planner would send you a copy of your plan to
approve, and if you are happy the supports will meet your needs and how they
will be managed, you can approve your plan.
A new version appeared on the NDIA website a day or so later where Step
4 becomes Implement your plan with no mention of approving it or the
The committee also heard evidence from Ms Anna Van Den Brook, mother of
three year old Amir, who spoke about the challenges of getting accurate
information about a lifting device and vehicle modifications she required for
I was told to refer to the NDIA website at my last meeting in
November regarding vehicle modifications. They said the guidelines were on
there. I spent ages searching the website, and they were not up. I contacted
the NDIA a number of times before they got back to me and was told, they're
being altered and we'll email them to you.' So they were not on the website.
Quite frankly, I do not have a spare minute in my day to sit down searching for
things that people should know are there. I got them and the early guidelines
stated that vehicle modifications would not be provided for children under
On a related communications issue, Mrs Louise Trinkle, mother of an NDIS
participant referred to the NDIA not returning phone calls and e-mails.
In replying to questions from the committee on the issue of poor
communications, the NDIA acknowledged that clear and concise communications is
an issue they are addressing:
Our communication and agency communication products could be
improved at all levels, including in our interactions with families and carers
and in describing the participant pathways, our decisions and the review
options. Plan implementation is challenging for all parties. For example, where
there are multiple providers within a transdisciplinary package, it can be
The committee heard from Dr Bruce Bonyhady that the Agency is working
with a greater focus to improve communications consistency:
...[W]e are working to strengthen our training and internal and
external communications. So, for example, guidelines are guidelines and there
is greater consistency.
After Ms Lester recounted the reception she received in her first
planning meeting, she explained the change in the planner's behaviour at the
next meeting. She also explained that before attending the second meeting she
engaged the services of a professional advocate to assist her with the planning
Between the first planning meeting and the repeat planning
meeting the tone was very different. It seemed as though the planner had
actually read all of the reports that I had provided. I sort of felt like there
was such a shift in her attitude, her tone with me, that it was more to get rid
of me, because I had sent her a formal agenda that I had set for the second
meeting. I had refused to come on site and said that I would be calling the
meeting in home with my advocate and with my husband present. The second
planning meeting, I felt as though from that first meeting, where she had said
to me, 'Expect to get nothing more than one home visit a week,' all of a sudden
I had the funds to pay for two, plus one on site somewhere. I was also provided
with a draft plan, which I was told did not exist, was not a possibility.
The committee in its future work plan will monitor the implementation of
these remedial actions.
The planning and assessment process
The committee heard evidence about a range of matters relating to the
planning and assessment process. These include information about the assessment
process, attitudes and conduct of planners and the importance of tailoring
plans to suit individual needs.
The majority of participants' carers at the South Australian hearing
told the committee that they felt confused about the planning process. The
committee reiterates that there was only a small number of witnesses at the hearing.
Participants' carers explained that they would have a conversation with the
planner and come to a verbal agreement, that would agree to some supports but
not others––which they felt were required. The carer would want to pursue the
missing support but would be told they can only dispute the plan if they agree
to the plan. And if they agreed to the plan they would not want to draw on it
because they wanted the missing support.
Ms Lester described her daughter's first planning session:
I felt my treatment during the planning meeting was
disgusting. I was not listened to. I was not allowed to discuss everything I
had brought with me. The way that the planning process started was with the
planner putting her hand up to me and telling me to stop and that she would be
asking the questions. I had put a lot of time and effort into preparing for
that meeting. I would probably estimate it at about 50 hours. The planner only
had the decency to take one little piece of paper that I had brought in with me
with her to look through at a later stage. I felt the planner assessed my
daughter's competencies on the spot with trivial questions based on my opinion
from which she made her own assumptions. I was only allowed to choose three or
four of the most important goals for my list for my daughter, as if the rest
were not really important enough to be considered.
The committee heard from Mrs Dollard who told the committee about how
the funding in the plans didn't take account of the interplay between the age
of the child and what their next stage of development is in going to
kindergarten or going to school:
My son is about to start kindie...I was not aware...that each of
our therapists will need to visit the kindie... A quarter of his therapy will
actually be assigned to training kindie staff and developing programs for them.
Once you take a quarter out of a 50 per cent drop then that is another huge
The committee asked the NDIA if it could clarify how the planning
process functioned––how much is written down and how much is done separately by
each planner. Ms Zweck responded by explaining that:
Once we have had that planning conversation and we develop
the plan that includes the funded supports we would have a discussion again
with parents about that. That may not necessarily be face to face; it could be
over the telephone. We would talk to them about what their package would look
like and we would try to have a negotiation to resolve things at that point. 
Ms Zweck added that:
We do have a senior planner for quality assurance, who
actually works very closely with those people who seek a review of our
decisions and also undertakes the independent internal review. We also have a
national quality assurance framework, where we start to look at particular
areas that might be themes. That is, to look at things like access decisions,
what is included in funded support plans and those sorts of things. It gives us
actual feedback around quality assurance.
In response to a question from the committee about whether anything was
written and provided to participants or if plans are provided upon
participant's request, Ms Zweck responded:
We would usually talk about it verbally with, potentially, a
draft plan, but we do not necessarily want to bring the plan into being yet
we cannot provide it as an approved plan—but as a draft, yes.
The committee also asked whether anything was provided to participants
in writing, during the planning process about the no disadvantage test. NDIA
Operations General Manager, Ms Liz Cairns, responded:
I do not think it is, but I think it is a really good idea
and we will take it back, I think, as part of the need to have really
appropriate communication products. We are trying to convey some really complex
The committee is aware that the confidence of the public in the Agency
and the success of the NDIS will rest in part with how well the Agency is able
to communicate effectively with its stakeholders. The committee welcomes the
Agency's implementation of strategies to receive feedback and assess and
improve behaviour and communications across the Agency and will continue to
monitor their success during the life of the committee.
The committee recommends that as part of the planning process, NDIA
implement a process similar to normal insurance industry practices, where
participants are provided with: clear disclosure documentation (about the
planning process that includes reference to the 'no disadvantage test'); a
written draft plan; incorporates a 'cooling-off' before a package is agreed;
and requires participants to sign their final agreed plans. The committee
believes that this is a fundamental element of the original intent of the
policy to empower and provide choice to people with a disability in the National
Disability Insurance Scheme.
The Support Needs Assessment Tool
The committee heard how the Support Needs Assessment Tool plays a
significant role in assisting an NDIA planner to assess the appropriate support
package for a participant.
The committee asked the Chief Executive Officer for Autism SA, Mr Jon
Martin what role his organisation had in assisting in the development of the
assessment tools to assess children with autism. Mr Martin responded saying
that Autism SA had:
No formal role at all. We are involved in the trial site
working party and have been allowed to comment on particular elements of both
the eligibility criteria and the layered approach to the funding levels for the
transdisciplinary package. But we feel that this has happened almost after the
horse has bolted. It would have been good to have that information and advice
early in the piece, considering the extensive work done around the Helping
Children with Autism package and also the Better Start program. There was a lot
of information gathered on best practice, how diagnosticians link with service
delivery planning—all those kinds of things. That has not really been
considered or incorporated, from our perspective, into the planning and
Mr Martin in response to further questions about whether the assessment
tool needs further work for testing autistic children replied that he thought
[A] very generic tool that is more geared towards people who
are physically or cognitively disabled. It does not necessarily pick up on the
sensitivities related to autism spectrum disorder.
Mr Martin added that:
In South Australia we have a very comprehensive process with
the diagnosticians network that we operate. The diagnosis is made on the basis
of a multidisciplinary assessment. They have all been accepted by the NDIA. But
nationally there is not a consistent approach to diagnostic assessment. I know
in other states and territories where there are launch sites they have
The committee asked the NDIA if they were undertaking any work into the
early childhood intervention issues. Ms Cairns responded stating that:
Ongoing work is continuing between that part of the agency
and the sector more broadly about establishing what the evidence base is,
including some of the high-end, complex autism programs.
The trans-disciplinary packages
The majority of participants (90 per cent)
that entered the NDIS in the first year of the South Australian trial site
require Early Childhood Intervention Services (ECIS) which provides specialised
support and services for infants and young children with developmental delays
or disabilities. Often, because of the level of multiple disabilities these
children have, they require coordinated multidisciplinary services that interface
across disability, health, education and Indigenous services. Additionally,
South Australia also has the second highest incidence (26 per cent) of autism
across the trial sites.
The funding of an early intervention for children with disabilities was
one of the central ideas regarding the economic sustainability in disability
funding identified by the Productivity Commission in its 2011 report, Disability
Care and Support (PC Report) which states:
...[T]he overarching objective of early intervention is to
incur expenditure on a particular intervention today that, not only improves
individual outcomes beyond that which would occur in the absence of the
intervention, but lowers the costs and impacts associated with the disability
for individuals and the wider community over the longer-term.
The committee notes that in recognising the ECIS requirement for a
coordinated approach, the NDIA introduced multidisciplinary packages referred
to as trans-disciplinary (TD) packages in October 2013. The NDIA told the
committee that the development of the packages were:
[I]nformed by experts in early childhood services that
evidence based practice requires a transdisciplinary, family centred, key
worker approach to services to children with disability under six and their
Transdisciplinary teamwork involves a team of professionals
who work collaboratively, and share the responsibilities of evaluating,
planning and implementing services to children and their families. Families are
valued members of the team, and are involved in all aspects of intervention.
One professional is chosen as the primary service provider for the family, and
acts as the conduit for the expertise of the team. The full team remains
involved, and the primary provider reports back to the team constantly.
As a result of their young age, South Australian participants' packages
were made shorter in length than other trial site packages. As such, the trial
site has the highest number of plans that require early review of any site at
23 per cent, as noted in the Third Quarterly Report:
[T]he proportion of plans requiring review less than 12
months after the plan commenced is higher in South Australia compared to the
other trial sites, as expected, as South Australia only has 0-5 year olds in the
Scheme. However this proportion has fallen substantially since the previous
report. As participants move to their second and subsequent plans, the
distribution of plan lengths in South Australia has shifted away from 3-6
monthly plans towards annual plans.
At the Adelaide hearing, the NDIA told the committee that it has
recognised that many of these ECIS children have multiple needs that impact on
the level and cost of care that they require. The NDIA stated that:
The majority of [these] participants and their families are
accessing the scheme under early intervention provisions. Transdisciplinary
packages are increasingly being funded to support families to enable
flexibility and recognise the frequently changing needs of young children, and
access and information is being provided state-wide through a network of
metropolitan and regionally based local area coordinators. The scheme is
ensuring that parents are linked into local mainstream supports and is
strengthening the sustainability of supports provided by families and carers.
There are early indications of providers expanding their services and
developing innovative responses to enable choice for participants.
In the Second Quarterly Report (December 2013) the Scheme Actuary
foreshadowed that new operational guidelines were being developed for a number
of supports :
[O]perational reforms are underway, such as development of
guidelines for typical volumes of travel, domestic assistance, community
participation, therapy, and respite, along with work on a national assistive
technology strategy. Implementation of these reforms will impact trend
The committee heard that due to their short length many of the South
Australian packages came up for review in early 2014, and some carers were
shocked and dismayed when they found that their new package funds were cut by
approximately half with no explanation.
Mrs Michaela Dollard who reported a very positive initial planning
experience found the second planning meeting quite different:
When it came to our second plan meeting, our funds were about
to run out. It was booked in for about a week before. I had been trying to get
a meeting before that, but they were very busy. It did not happen with our
planner either, so it was someone completely new, someone I had not met before.
Because of how well the first plan meeting went, in hindsight I went in a
little naively, thinking it was going to be the same. Looking back, I probably
was not as prepared as I should have been, but I was not given any documentation
on what to bring with me and I was not told that I would need to fight our case
again. I assumed that we would have a bit of a rollover. Everything was
working; Harry was making great gains. Why wouldn't we just keep the plan the
His second plan is slightly less than half of his first plan.
At the meeting I felt quite bamboozled. I realised I was quite ill-prepared for
it and I was not prepared to go into battle either. I did not realise that is
what was going to have to happen.
The committee heard from Mrs Wendy Hosking who had been supporting her
six year old by increasing her mortgage until she gained entry into the Scheme.
Mrs Hosking explained that at her first planning interview she was told:
'We are now approving transdisciplinary packages for a
maximum amount of $12,000. I have the discretion to approve up to $16,000 in
more complex cases.' She said: 'More can be approved if it goes to a higher
That was a shock because initially we had been told it would
be needs based. What I was asking for and what we are currently providing is
well beyond that, so obviously it was not going to go nearly as far as we had
The process of the NDIS planning had already put a lot of
stress on us to get it all ready; I thought, 'Emotionally I can't cope with
having to appeal this, so I won't go to an appeal. I will just accept what I've
got; I've had nothing so it's a bonus.' And I do really appreciate it, because
I do not feel, necessarily, that the government should be paying for my daughter.
The reduction in package costs may not affect all South Australian
recipients as mentioned by Ms Ots who commented:
[P]articipants that are reasonably happy are the ones with
the more minor or moderate disabilities. They pretty much seem to be happy with
the system, from my experience. The ones who have anything a little bit more
complex are the ones who are not happy. There are big gaps in the crossover
between medical treatment, therapy and the schooling system—nobody knows where
medical goes or where therapy starts. There are a lot of gaps. The more complex
the issue, the more gaps. There is no differentiation between a minor thing and
a more severe complex one.
A number of carers also spoke to the committee regarding the consistency
of the packages for similar disabilities, Mrs Liz Cohen noted the inconsistency
of planner's decisions to include travel costs in the TD plan:
Families have been upset that travel has not been separated
out of the transdisciplinary package and put within the package where other
families have actually had it separated from that service provision. We would
just like to identify that there are some inconsistencies with what families
are receiving and we know—everybody in this room would know—that families talk,
and so they are very well aware of what they are receiving and what other
families are receiving.
The committee questioned the NDIA on the 8 May 2014—noting it had heard
similar examples at both the Barwon and Hunter trial sites related to
children's TD packages—as to whether the NDIA had provided sufficient rational
reasons why their packages where cut by half. Ms Zweck stated that:
I think what I am also hearing from you is the way that we
communicate that decision is not clear to families, that they do not actually
understand what the reasons are behind it.
The committee enquired about the timeframe for the introduction of the
TD approach and the decision to set them at particular levels. The NDIA
explained that there had been a change in policy and that new TD packages and
operational guidelines were introduced in January 2014.
The advice contained in the NDIA fact sheet accompanying the operational
guidelines for TD packages for children states that:
Costing of services is to be within the pricing levels outlined
on the Agency’s price list. Provision of a mix of therapies and a key worker
for the family are expected to fall into one of the three categories;
a) Level 1 – low needs – up to $6000 to $8000 per
b) Level 2 – medium needs - $8001 to $12000 per annum,
c) Level 3 – high needs - $12 0001 to $16000 per annum.
Level 1 (low needs) is generally appropriate for a child with
a developmental delay, or mild disability, who is developing slower than their
Level 2 (medium needs) is generally appropriate for a child
with a disability or developmental delay who either has moderate single and/or
multiple areas of needs/concern that require specific intervention, or
behavioural concerns or some family complexities that require referral to other
Level 3 (high needs) is generally appropriate for a child
with a disability and/or severe developmental delay, multiple disabilities,
severe behavioural difficulties, rapid deterioration and/or complex
health/medical needs who has severe and/or needs that require specific
It is expected that the NDIS will fund necessary and
reasonable early childhood interventions that are intensive where the
intervention is able to deliver significant improvements within a period of
approximately 6months. Up to four periods of early intervention may be funded.
Ms Liz Cairns, NDIA's Operations General Manager said that:
The operational guidelines are designed to support staff in
what we understand is likely to be an appropriate response to a typical circumstance.
They are not caps, and they are not limits.
This point was reiterated by Dr Bonyhady at the public hearing in
The operational guidelines make it very clear that these are
guidelines. They are not mandatory limits.
In the NDIA's first quarter report, the average annualised plan cost in
South Australia was $23,300 and the median price point was $15,800. At the end
of the third quarter in March 2014, after the implementation of the new
operational guidelines, the South Australian average annualised package had
reduced to $14,083 and the medium annualised committed package cost was down to
Since the introduction of the new operational guidelines for TD packages
in January 2014, the average annualised package cost for South Australia
decreased by $6178 from the December 2013 quarter. As of the 31 March 2014, the
South Australian package costs are the lowest average annualised package cost
out of the four trial sites. The change in average South Australian package
cost can be seen in Figure 5.1 below.
Figure 5.1: South Australian annualised package costs
Source: National Disability
Insurance Agency, Table 2.1.9. Real, average and median costs of
individualised support packages, Quarterly Reports to COAG Disability
Reform Council: 30 September 2013, p. 38; 31 December 2013, p. 54; and 31 March
2014, p. 30.
While the NDIA emphatically states that there is no cap or limit on the
TD packages, the committee is of the view that the effect that the operational
guideline advice had on planners would appear to have significantly influenced
a reduction in approval of the cost of packages.
Additions to trans-disciplinary
This section highlights the issue of where the new funding levels are
insufficient to cover a range of supports required by a participant. The
committee heard evidence that when the requested package supports exceed the
standard level 1–3 packages (see paragraph 5.74), the local planner is unable
to grant approval. The committee noted that this requires approval to be sought
from NDIA executive—generally in Canberra––which takes some time and then
potentially jeopardises meeting the early intervention needs of the child.
Providers also gave evidence regarding TD packages, stating that much of
what an individual actually receives as a package often depends on their
ability to articulate their needs which raises the issue of the role of
effective advocacy that will be discussed further on in this chapter. Mrs
Amanda Haskard stated that:
If you have a standard TD plan they are going through quite
nicely. When you have requests that are over and above, then, lately, it does
feel like each one of those then needs to go through some kind of escalation
method. It was not like that in the early days. So I do feel that there has
been a shift.
With the changes made to transdisciplinary packages, many carers have
told the committee of the long waiting periods 'for a decision from Canberra'
for approval of supports that exceed the standard funding levels 1-3. Ms Amanda
Van Den Brook relayed her frustration:
I got the plan. I really do not have time to sit down and go
through and try to understand how this all works—is something funded or is
something not funded?—and I feel that no-one really explained terms to me. We
were talking about reviews and appeals and getting things added on. I have
requested things to be added on and I have been told to fill in a review and go
through it that way. I do not have time for that. I emailed and asked for
simple, small things to be added on, and I have not received any response. It
has been over a month and I have not received a response, and the email has
been resent. I do not have time to go for reviews and I do not have time to go
The committee at its 8 July meeting received evidence from the NDIA
which indicated that 10.5 per cent of children in South Australia with a
primary diagnosis of autism have plans where the agreed costs of early
intervention exceed the guidelines of $16 000.
The NDIA also provided evidence to the committee that stated as at 31
March 2014, across the Scheme, there were 1558 children aged 0–6 years with an
approved plan. Of these children, 267 exceed $20 000 when calculated at an
annualised cost (NDIA notes that some of these plans were for periods less than
Provider views on trans-disciplinary
The committee also heard from providers regarding the impact of the TD
packages and how the levels of funding amounts are impacting children's
services particularly for children who are deaf or hearing impaired. Mr Michael
Forwood, Chief Executive Officer for Cora Barclay Centre told the committee
Some of the recent changes to the so-called transdisciplinary
funding packages put a few things in jeopardy. In the first place, if a child
only has one disability, $16,000 does not cover the cost of the early
intervention program, which would cost more like $20,000 to $22,000 per child
per annum. Secondly, the newly introduced high, medium and low cost
differential brought in within the TD package as indicative caps of funding
based on the perceived extent of the disability does not work with children who
are deaf and hearing impaired. Logically, this may be appropriate and
applicable for people who have got care needs related to intellectual and
physical disabilities, but to learn to listen and speak and to participate
effectively in the mainstream school system someone with bilateral hearing loss
that is mild or moderate will need the same program as a person who has severe
and profound hearing loss. In fact, some of the children with lower levels of
hearing loss may be disadvantaged when compared to kids who are profoundly
bilaterally deaf who have got dual implants because the access to speech and
language available to a bilaterally implanted child could be superior to that
available to a child who has bilateral moderate loss or moderate-severe loss.
This is the technology that helps the kids here who have implants.
Mr Forwood continued, noting the commercial impact of what he described
as the TD funding caps on his business and sharing the advice that he had
provided the NDIA. The committee, as mentioned at paragraph 5.74, has been
advised by the NDIA that there are no funding caps:
We have said to the NDIA and I have said to David Bowen [NDIA
CEO] that if you fund a $22,000 per child per annum program for 70 kids at a
rate of $16,000, $12,000 or $10,000, we will either be out of business within
two or three years, because it will not be financially sustainable, or we will
have to compromise the program. We have measured and published the outcomes of
centres catering for a cohort of over 700 children with hearing loss but no
additional disabilities, and over 90 per cent of the children develop
age-appropriate speech, language and comprehension by age 5... The tightening
up of funding through capping and squeezing—a phenomena of the last couple
months—puts in jeopardy the objects of the scheme.
In written evidence provided on 8 July 2014, the NDIA noted that it is
commissioning work on developing the guideline approach for autism. The Agency
has engaged an internationally recognised epidemiologist and academic, Dr
Katrina Williams, to convene a group of experts to update the research evidence
for the management of autism. It told the committee that this work will lead to
the development of more specific guidelines for needs assessment and reasonable
and necessary interventions for children with autism. The NDIA will also commission
a similar project for children with sensory disabilities (hearing and/or visual
Based on the evidence received on trans-disciplinary packages, the
committee recommends that the Agency undertake a review of the current
arrangements regarding trans-disciplinary packages, in particular, the
operational guidelines and advice and training it provides to its planners.
This review should encompass and be informed not just by clinical experts and
researchers, but it should also consult participants, carers and providers.
The backdating of plans
The committee heard of a number of incidents where participant's plans
had had their start date backdated. This issue of backdating plans had been
raised with the committee at other trial sites (see chapters 2 and 4). The
implications of backdating, which were also raised in the Barwon chapter, were
that some providers were impacted in that they incurred expenses for services
from packages which were not valid.
The committee discussed this issue with the NDIS at two separate private
meetings in Canberra. The NDIA Chief Executive Officer, Mr David Bowen, told
the committee that there had been two ICT system errors that had affected how
dates were registered in the NDIA system:
I have done some investigation on this and I would like to
start by saying that there is not one instance we have discovered where a
planner has deliberately backdated a plan. But we have two system problems that
were in fact resolved by December. The first was that during July-August, when
we were just starting, planners were putting on the plan the date when they
commenced the discussion and that was being reported as the commencement date.
When the word 'dataset' was going to the states they were using that to turn
off supports for people, and that was leading to a service gap because the date
the plan is effective is the date of the plan approval.
That is the first one. The second one is also a system
problem, in that we would have a plan that was concluded and approved. A person
would come in and have a discussion about some variation to supports. When we
made those variations to the supports, the system we were operating in did a
write-over of the approval date. So you had a circumstance where a plan had a
date of commencement that was earlier than the date of approval, because the
date of approval had been written over with the latest date.
When I first heard this I thought, 'It is extraordinary that
we are operating in a system that does a write-over in what is supposed to be a
longitudinal database.' So we have fixed that up. While the date will change,
we have a record of the first day on which the plan was approved, and that is
the date on which the services commence.
The NDIS has since acknowledged that a number of providers had been
impacted and that it has made a commitment to reimburse providers for any
out-of-pocket expenses upon receipt of an itemised invoice.
The role of advocacy
The committee also heard from a number of carers and providers who spoke
of the benefits of using an advocate to assist them with the planning process,
particularly in understanding the complexity of the Scheme and providing
support through the planning process. Ms Lester advised:
I had read every booklet, leaflet and pamphlet I could get my
hands on that were provided at all the morning teas and seminars prior to my
daughter becoming a participant of the scheme. I had read the word 'advocate'
many times. I have gone back through all of these booklets and I cannot
actually find anywhere that says there are organisations of advocates. I do not
know whether that is because I am young or I have not asked the right
questions, but during the whole process I was never told that there is actually
a group of people who can be advocates rather than just me presuming that I am
the advocate of my daughter.
The committee enquired as to how Ms Lester found this person.
I had started a Facebook page for my daughter... It was
purely a fluke that one of those people, who has a child with a disability who
she has been dealing with for 15 years, asked me, 'Have you called an
advocate?' I said, 'What do you mean?' She gave me the number of an agency. I
called the agency and they commenced assisting us immediately...Without her I
would not have known that I could question many things that I had many more
rights than I was led to believe. She is on her way. She had a meeting today
that she could not cancel. I tell everyone I talk to, 'Get yourself an
advocate,' because she has been worth her weight in gold. She gave feedback to
me that the NDIS was insinuating that advocates would not be required anymore
because of this fantastic new scheme where everybody has choice and control.
Mine was the first complaint that she received and, since me, she says they
have not stopped coming. I am wondering how many other people do not realise
that there are actually organisations of advocates rather than just this
wishy-washy 'advocate' word that is in all of the literature.
The committee also heard from Mrs Amanda Haskard about advocates sitting
in on planning meetings:
As a support provider, we are offering to be at the planning
meetings with them. We have had a little bit of resistance of that from the
agency. We understand their point as to why they do not necessarily want
providers at meetings, but we believe it is parents' choice to have us there.
We are circumventing it by generally attending all of the planning meetings
with our families.
The committee also heard from Mr Phillip Martin, Chief Executive Officer
of the Muscular Dystrophy Association, on the importance of advocacy services:
I believe this system is exceptionally vulnerable to
decisions that were taken between six and eight years ago to remove funding for
advocacy, which has then left a hole in the planning and a major gap in the
development of cost-beneficial or cost-neutral outcomes as well as the
opportunity to get maximum outcomes for people.
Mr Martin expanded on the advocacy role especially concerning autism
At the moment we have block grant funding from the
Commonwealth, individualised funding from the Commonwealth, block grant funding
from the state, individualised funding from the state and individualised
funding under an NDIS model. The autism adviser roles, for example, are funded
by a block grant from the Commonwealth. We have been put on notice that it is
highly unlikely that they will continue, though they have been an immense and
very effective support for the autism community in assisting
families—especially in the pre-planning process before families even get to the
NDIA—through the process of getting to understand the diagnosis; working
through the grief process with accepting a diagnosis; how families can tell
their extended family members; how to support siblings of the person with the diagnosis
through that process; and what kinds of supports and systems might be necessary
to best move that family to a position where they are effectively integrating
and supporting their son or daughter. So we would like that to continue, in
terms of the autism adviser role, but, as I said, we have been put on notice
that that is unlikely to continue.
The committee notes the importance of the role of advocacy services in
ensuring quality plans and supporting participants in the planning process. The
committee recommends that certainty regarding the role and support for advocacy
services in the NDIS be urgently resolved through the Ministerial Disability
The committee recognises that there have been many achievements made in
the South Australian NDIS trial. Many participants are receiving supports and
moving on with their lives. Perhaps as expected, because of the age cohort
South Australia has had a difficult and emotional experience transitioning to
the NDIS. As Mr Jon Martin said:
We are implementing an NDIS, and if that were all we were
doing we would probably be going full throttle, gung-ho, and achieving
unbelievable outcomes. But we are also trying to unscramble the state funding
system and moving to individualised funding. We are also trying to unscramble
the old Commonwealth system with HCWA and Better Start.
There are many significant challenges identified in the South Australian
trial site. Some of these challenges are common to all trial sites, such as the
accessibility and readability of information for participants and carers and
the need for a more consistent approach to communications. Others are just
emerging such as working with regional and remote communities and Indigenous
people with a disability. However, some of the challenges in South Australia
are not unique but more prevalent due to the age cohort currently transitioning
into the Scheme.
In moving forward, the committee notes that the NDIS has indicated that
it will be working closely with all stakeholders to continually improve
processes and particularly the planning process in respect to children and
autism. The planning conversation and draft plan need further consideration
specifically as highlighted the inclusion of a cooling-off period and a right
to appeal before a plan is implemented.
Furthermore, the committee consistently heard that participants want to
sign their final plan. The committee is of the view that this is not just about
completing a process; it is central to the overall intent of the Scheme to
increase choice and control. It is also about empowering the participants in
taking their first steps to achieving their goals.
It is evident to the committee that some plans, particularly some trans-disciplinary
plans, have been assessed strictly in accordance with the operational
guidelines by planners and as such have excluded some participants from the
supports they require. Where this is particularly a concern is in respect to
children who quite clearly have permanent disability such as hearing loss, and
where early intervention will provide cost-effective outcomes exactly as
envisaged by the Productivity Commission, it is unacceptable. The committee was
however encouraged by NDIA's acknowledgement at the hearing that:
The guidelines...are not cast in concrete. Ongoing work is
continuing between... the agency and the sector...about establishing what the
evidence base is, including some of the high-end, complex autism programs...we
have the evidence, I would certainly expect to see that we will get some
further information and instructions out to staff, or in fact change the
guidelines. We are clearly satisfied that the evidence means that the current
guidelines are insufficient.
The committee will carefully monitor the future amendments and
modifications to this operational guideline as the next round of trial sites
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