This chapter provides background information about the ECEI Approach,
and considers the key issues relating to Early Childhood Partners, eligibility
and access to the Scheme, and functional assessment tools.
What is the ECEI Approach?
The ECEI Approach is designed to individually determine and facilitate
the most appropriate support pathway for each child aged 0–6 years with a
disability or developmental delay (regardless of diagnosis), and their family.
Depending on their individual circumstances, families are provided with
a combination of information, emotional support, referral to mainstream
services, short-term intervention, or help to access the NDIS for longer-term
intensive supports as part of a funded NDIS Plan.
The Approach is intended to uphold the eligibility criteria of the NDIS,
while helping to ensure that less severe cases are supported outside of the
The Approach was developed based on four research pieces, the success of early
childhood intervention in NSW and Victoria, and in consultation with early
childhood practitioners and researchers.
Introduction of the Approach
During the trial phase of the NDIS, higher than expected numbers of
children aged between 0–6 years sought access to the Scheme.
In response to this emerging pressure, the National Disability Insurance Agency
(NDIA or the Agency) developed the NDIS Early Childhood Early Intervention
(ECEI) Approach over 2015–16.
From September 2015, the Agency piloted early intervention supports for
children aged 0–6 years in the Nepean Blue Mountains.
In February 2016, the Agency announced that it would implement a nationally
consistent approach to supporting children with disability in the NDIS under
the ECEI Approach.
There are now two entry pathways for people to receive support under the
Scheme; the ECEI pathway for children aged 0–6 years, and a general pathway for
people aged 7–65 years. The ECEI pathway is designed to be a 'gateway' to the
NDIS for children up to six years of age, ensuring that only children who meet
the eligibility criteria of the NDIS become participants of the Scheme.
Supports covered under the Scheme
As part of the transition to the NDIS, the interactions between the NDIS
and mainstream services are guided by Bilateral Agreements between the
Commonwealth and State and Territory Governments.
In April 2013, COAG agreed to a set of principles for determining the
responsibilities of the NDIS and other service systems. These were updated in
The principles outline specific roles and responsibilities for all governments
The early childhood education and care sector has responsibility for
meeting the education and care needs of children with a development delay or
disability, including building the capacity of early childhood education and
care services to provide inclusive education and care to all children.
The health system, including child and maternal health services, has
responsibility for supports which are treatment-related, including acute,
ambulatory, continuing care and new-born follow-up.
The NDIS has responsibility for personalised individualised supports,
which are required due to the impact of the child's impairment on their
functional capacity. This includes working with a child's family, carers and educators
to implement supports or early interventions.
The NDIS has responsibility for early interventions specifically
targeted at enhancing a child's functioning to undertake activities of daily
living or specialised supports to transition a child with a disability into
Role of Early Childhood Partners
To fulfil its responsibilities, the NDIA has engaged Early Childhood
Partners to deliver the ECEI Approach.
The core role of Partners is to assess each individual child and provide
a recommendation to the NDIA regarding the most appropriate pathway for that
child. This can include information services, referral to mainstream services,
short term intervention, or help to access a Plan.
Partners also play a role in promoting the ECEI Approach at the local
level. Partners work to build capacity in the community and expand
opportunities for greater social participation for all children they work with.
Partners in the Community Program
The NDIA recruits Partners through an open competitive process called
the NDIS Partners in the Community (PITC) Program. The Program establishes partnerships
between the Agency and existing community organisations.
According to the NDIA, the assessment for PITC to deliver ECEI services
is undertaken internally by NDIA assessors who have expertise across the field
of early childhood intervention.
In August 2016, PITC Program Round One commenced to engage Partners to
deliver ECEI Services in Service Areas due to transition to the Scheme before
1 January 2018. It was determined that only one Partner would be appointed in
each Service Area. In the case of South Australia, a single Partner was sought
to provide ECEI services across the entire state (excluding Remote and Very
In March 2017, PITC Program Round Two commenced engaging Partners to
deliver ECEI Services in Service Areas due to transition to the Scheme before
1 July 2018. Funding was offered between the Activity Start Date and 30 June
2020. ECEI Services for South Australia were not included in PITC Program Round
In October 2017, PITC Program Round Three commenced to recruit Partners
for Service Areas due to transition to the Scheme between July 2018 and
Grants are being offered for ECEI Services in 29 Service Areas across four
jurisdictions (QLD, NSW, NT, VIC). There are 14 Service Areas due to phase into
the Scheme, and 15 Service Areas due to commence where transition services are
already in place.
Funding is being offered between the Activity Start Date and
30 June 2021.
During the committee's hearing on 8 November 2017, Ms Stephanie Gunn,
Acting Deputy Chief Executive Officer, NDIA, explained the basis upon which
Partners are funded:
Partners are, in effect, another arm of the agency's delivery
capability, so they would have otherwise been in the original funding of the
agency—the agency staff would be doing the work that we are getting our LAC
partners to do per the early childhood partners. They're funded on the basis of
equivalence to the per cent of the population that fits within that age cohort
and the amount of funding that the agency would have had. So it reflects the
fact that we want them to do a whole range of activities, but it's within the
funding envelope that the agency would have had available to do that function.
In response to questions on notice, the Agency advised that funding is based
on the phasing numbers set out in bilateral agreements which cover the service
areas, together with estimates of participant volumes as well as the number of
children unlikely to need funded supports. The overall value of the grant is
proportionate to the volume of work expected to occur in each quarter.
Rollout of the Approach
The ECEI Approach is being rolled out across Australia in line with
Bilateral Agreements between the Commonwealth and State and Territory Governments. The roll out
four transitional pilot partners in the NSW Nepean Blue Mountains
two partners in Tasmania;
one partner in the ACT;
three partners working across five Service Areas fully
operational in Queensland, including the Services Areas of Townsville, Mackay,
Toowoomba, Ipswich and Bundaberg; and
six partners in Victoria, with two additional Service Areas to
commence in advance supports by October and November 2017.
Partners in the Nepean Blue Mountains and Townsville are the only areas
that have been applying the ECEI Approach for over 12 months.
Transitional arrangements apply in NSW, where selected existing ECEI
providers continue to provide limited gateway services and offer Planning and
funded support provision to families; and in SA, where interim services for the
ECEI Approach commenced in September 2016 through an in-house and outsourced
clinical expertise model with the South Australian Government.
Until the SA Partner is operational, the NDIA in SA has established an internal
Early Childhood Team. The team consists of NDIA staff who have experience in
identifying and determining supports for young children. The NDIA has also
contracted a clinical partner to assist the Early Childhood Team with providing
information, early childhood intervention supports and strategies to children
with developmental delays, and to work with families to build strengths to
support early intervention.
All interim arrangements have an end date agreed with the jurisdictions and
acknowledge that the future model will be to source ECEI services via the NDIS
Partners in the Community Program.
As at 30 September 2017, 6716 children were in the ECEI gateway by the
end of the quarter. Of these, 3611 had previously entered as at 30 June 2017,
and an additional 3105 entered the gateway this quarter.
By 2019–2020, it is expected that 47 000 of the 460 000 total Participants
with approved Plans will be children aged between 0–6. According to the Agency,
estimates indicate that a further 59 000 children aged between 0–6 may identify
as having a developmental delay or disability but are not expected to need
individualised funded supports.
Access to the Scheme
Children can access supports as Participants of the NDIS if they require
intensive intervention to help them meet their goals. In order to become a
Participant, children must meet residence requirements and fulfil the early
intervention criteria of the National Disability Insurance Scheme Act 2013 (NDIS
Act). Children are eligible for early intervention supports as a Participant of
the Scheme if they meet the following:
Are an Australian citizen, or hold a
Permanent Visa or a Protected Special Category Visa; and
Childhood Early Intervention Requirements
Are a child aged less than six years
of age with developmental delay, which results in:
(a) substantially reduced
functional capacity in one or more of the areas of self-care, receptive and
expressive language, cognitive development or motor development; and
(b) results in the need for a
combination and sequence of special interdisciplinary or generic care,
treatment or other services which are of extended duration, and are
individually planned and coordinated; and
(c) these supports are most
appropriately funded through the NDIS, and not through another service system;
There is evidence that getting
supports now will help by:
(a) reducing how much help they
will need to do things because of their impairment in the future; and improving
or reducing deterioration of their functional capacity; or
(b) helping their family and
carers to keep helping; and these supports are most appropriately funded
through the NDIS, and not through another service system.
Multiple access points
The committee understands that families with concerns about their
child's development can call the Agency and request an Access Form directly.
These applications are processed by the NDIA National Access Team without the
family having to meet with an Early Childhood Partner. Families that can afford
to source reports privately are potentially able to enter the Scheme through
this point quicker than those families awaiting assessment from an Early
Childhood Partner. The potential flaws of having a variety of access
arrangements were identified by National Disability Services:
This team assesses children on the basis of submitted reports
and information, but the children are not seen by a specialist early invention
worker. Some families pay for numerous expensive assessments to support their
bid for access and are referred to an ECEI Partner only after having been
accepted as an NDIS participant, to have a plan developed. Advice from ECEI
Partners suggests that the number of children accessing the NDIS through this
channel is increasing and is taking precedence over their other ECEI work as
they are required to prioritise the development of plans for these children.
The committee recognises that the ECEI Approach is in its infancy,
however, it is concerned that the current access arrangements are potentially
advantaging families who can afford to source expensive assessments and reports
to expedite their child's access to the Scheme. The NDIA should clarify current
ECEI access arrangements and publicise this information on its website. The
Agency should also clarify whether multiple access points are expected to be
permanent, and if so, how such access arrangements will embed equity, fairness
and efficiency in its operation.
The committee recommends that the NDIA clarify and publish current ECEI
access points, and outline the future model for access arrangements.
Early Childhood Partners
Engagement of Partners
Inconsistency in the engagement of ECEI Partners across jurisdictions
was raised by several submitters.
Scope Australia highlighted that Victoria is securing Partners in each
roll out area, while NSW is continuing to fund current Early Childhood
Intervention Service providers to support new and existing participants on the
ECEI pathway until full Scheme roll out in 2018, upon which tendering for
Partners will commence. It argued that there should be a nationally consistent
approach to the engagement of Partners.
KU Children's Services questioned the fairness of allowing the NSW
Department of Family and Community Services to approach specific early
intervention providers to engage them to provide ECEI supports as part of
transitional arrangements to June 2018, rather than using an open, competitive
Submitters expressed criticism that, despite being a trial site, no ECEI
Partner has yet been appointed in South Australia and that only one will be
appointed for the whole state.
The NDIA explained why it appointed one ECEI Partner for the state of
We went to the market for one knowing that the vast majority
of children zero to six were already in the scheme. The market response was not
successful, so we have spoken to providers and the sector in South Australia.
We are currently looking at our options to identify appropriate partners for
While the committee understands the complexities across the country due
to bilateral agreements and local circumstances, its preference is that there
is a nationally consistent process for engaging Early Childhood Partners, and
consistent roles and responsibilities for those Partners.
The committee recommends that a nationally consistent process for the
engagement of Partners be developed by the NDIA.
Expertise of Partners
Limited early childhood
A key aspect of the ECEI Approach is the appointment of experienced and
knowledgeable Early Childhood Partners. Partners must have strong knowledge
about the local community and its services, and an understanding of the needs
of children and their families in order to successfully deliver the ECEI
Partners are supposed to be selected based on their experience, clinical
expertise, and best-practice approach to delivering ECEI services. However,
according to submitters, some Partners have been appointed despite their
limited experience in early childhood intervention.
Ms Trish Hanna, President, ECIA, highlighted that the NDIA has recruited
Partners that do not specialise in early childhood intervention:
ECIA questions why the agency would recruit partners who have
specialties in areas such as domestic violence, child protection and
homelessness, as examples, to provide specialist advice and support for
children with delays or disabilities. Other imperatives appear to have been
prioritised by the NDIA, resulting in a drift away from the underpinning
principles of the ECEI approach. A focus on applying a gateway and triage
mentality has crept into the selection of partners.
Limited local knowledge
Appointment of ECEI Partners was intended to build on existing, local
community knowledge and expertise. However, ECIA Victoria/Tasmania highlighted
that a number of Early Childhood Partners have been appointed from out of area,
and have limited knowledge of local supports and services.
Mr Robbi Williams, Chief Executive Officer, JFA Purple Orange, drew the
committee's attention to an aged-care provider based in Queensland which was
commissioned for LAC services in South Australia:
It is very hard to understand how an aged-care provider based
in Queensland can know anything about the northern suburbs of Adelaide and the
Barossa and Light areas. It is the only area generally in South Australia where
the LAC service has been commissioned. It is more involved than that. It would
not be enough to have a South Australian agency covering those
areas...communities have different histories, they have different traditions and
they have different personalities operating. The only way that you can
successfully navigate that is if you are embedded in those communities.
While the Victorian Government submission noted that some organisations
have been appointed as Partners despite their lack of early childhood
intervention experience; it argued that some have adapted quickly to the ECEI
framework and achieved credibility in a short amount of time.
Conflict of interest
One function of the ECEI Partner role is to assist families and carers
to develop Plans for children who are Participants of the Scheme. However, some
Partners have also been approved to provide early intervention services to
The NDIA submission explained under what circumstances these arrangements
have been necessary:
The intent of the transitional arrangements has been to
assure timely access for families to ECEI supports...in some exceptional
circumstances, transitional arrangements have allowed Partners to also deliver
NDIS funded supports as a service provider. These arrangements have been
approved when there is likely to be a market failure of qualified early
childhood providers. Where these arrangements have been endorsed, there has
been a requirement for a mitigation strategy and management of any actual or
perceived conflict of interest in the provision of ECEI supports.
Some submitters were concerned that allowing Partners to provide
services to families that they are developing Plans for raises serious
potential for conflict of interest.
Scope Australia argued that the NDIA's decision against appointing
existing providers to avoid a conflict of interest may have resulted in
Partners being appointed with no background or expertise in early intervention.
Speech Pathology Australia and KU Children's Services argued that
Partners can place families on their internal waiting lists rather than
referring them to other organisations. Allegedly, some practices have already
seen a decline in their referrals as a result.
There were also concerns that families might feel pressured to use the
Partner for intervention services, or be deterred from requesting to continue
services with their existing provider.
In October 2017, ECIA NSW/ACT published an open letter to the NDIA
regarding its decision to preclude registered local service providers from
applying for the NSW tender. It argued that the approach is contradicting
effective best practice by preventing experienced organisations from applying.
Submitters argued that adequate safeguards and monitoring of conflicts
of interest is required to ensure that families are being offered a choice of
all available providers by ECEI Partners.
Under the ECEI Approach, Partners are required to keep a record of all
activity in the ECEI gateway on a monthly Actuary Reporting Tool. The tool is a
reporting mechanism that allows Partners to provide detail to the actuaries to
capture the numbers of children and level of supports being provided.
Partners are also required to develop a profile for each child they
assess through the application of the Paediatric Evaluation of Disability
Inventory–Computer Adaptive Test (PEDI-CAT) tool.
ECEI Partner, ASPECT, was critical of the administrative burden being
placed on Partners. It argued that the Actuary Reporting Tool and the PEDI-CAT
are labour-intensive and inefficient processes to complete.
ASPECT was concerned about the amount of therapist time being spent completing
administrative processes 'when there is already a scarcity of early childhood
intervention therapists providing therapy'.
Early Childhood Partners are also required to meet a list of Performance
Indicators, which have been developed by the NDIA to monitor and evaluate the
Partners in the Community Program's performance through effective and efficient
use of funds and resources. Failure to achieve Performance Indicators may be
considered by the Agency in considering the Partner in future sourcing rounds.
The Performance Indicators relate to the Partner's ECEI functions
(Information Gathering and Profile Development, Community Connections, Initial
Supports, Access Recommendation, Plan Review), as well as Participants'
safeguards and volumes.
Of particular concern is the 'Access Recommendation' Performance Indicator.
The performance target states that the Partner should ensure that 'no more than
50 per cent of children move from Initial Supports [short-term intervention] to
obtaining an access decision for the NDIS for longer term planning'.
AMAZE was concerned that such a target would be set within an
entitlement-based scheme and how it might influence the practices of Partners.
In its report on NDIS Costs, the Productivity Commission concluded that
the target is inappropriate in an entitlement-based scheme. The Commission
recommended that that the NDIA remove the Performance Indicator target placed
on ECEI Partners.
During the committee's hearing in Melbourne, NDIA officials advised that
the target was not intended to be used as a constraint for entry to the Scheme:
We have acknowledged that that KPI is not framed in the way
we wanted it to come out. It was based on the experience of our trial of the
early-childhood approach in the Nepean-Blue Mountains where, in fact, the
partners themselves said to us that it is about 50 per cent. Of the kids who
come in, we can find alternate sources where they should be accessing
mainstream supports, or we can provide them with those initial supports and set
them on the right path which would mean that they did not need access to the
scheme. Then about the 50 per cent do come in. That was what we were using as
our guide. It has come out as if it is a hard parameter that we would want to
see. We have changed that for round 3.
In response to questions on notice arising from the committee's hearing
20 October 2017, the NDIA provided the following clarification:
The Key Performance Indicators (KPIs) for National Disability
Insurance Scheme Partners in the Community delivering Early Childhood Early
Intervention (ECEI) services are included in the Grant Agreement Statement of
Requirements. This level 2 KPI has already been removed from being assessed by
the National Disability Insurance Agency based on the Productivity Commissions
recommendation for its current Partners delivering ECEI services. The KPI will
also be removed from the Round 3 Agreements and Statement of Requirements
currently in draft before execution of the final documentation with new
The issue of whether there is a potential of a conflict of interest is
not limited to the delivery of ECEI services. Other roles in the Scheme, such
as Local Area Coordinators, or advocacy organisations have also been subject to
scrutiny over whether they can carry out their duties impartially. A balance
has always been sought to mitigate any perceived or real conflict, while still
being able to utilise the expertise of those delivering or recommending services.
Given the relatively small number of Partners so far engaged in the ECEI
Approach, the committee accepts that while those concerns are legitimate, in
the circumstances it is content with the measures currently taken by the Agency
to manage the situation.
With regard to the regulatory compliance obligations placed on service
providers and Early Childhood Partners, the committee is supportive of a
rigorous regime to manage performance. While it had objections, similar to
those of the Productivity Commission, to the 50 per cent target of children who
were recommended to become participants in the Scheme, it is content that that
has been removed, and will not be included in any future contractual material.
Clarity of eligibility criteria
Interpretation of criteria
Submitters were concerned that a lack of clarity in the eligibility
criteria has resulted in the criteria being applied inconsistently.
Speech Pathology Australia argued there have been cases were one child
has been granted access under the ECEI criteria while the other has not, even
though both children present with the same condition and similar functional
impairment and needs.
The Queensland Government encouraged the Agency to ensure that
eligibility information is transparent. It argued this would assist families to
understand whether their child may be eligible for supports and on what basis,
and help minimise the risk of conflicting interpretation of criteria.
Poor understanding is being compounded by perceived changes to the
eligibility criteria. Autism Spectrum Australia (ASPECT) described how some
children on early phasing lists were entitled to receive funded packages but
now no longer meet the criteria.
The ACT Government contended that in late 2016, the NDIA changed its
Operational Guidelines to require that children 'need a combination and
sequence of special interdisciplinary or generic care, treatment or other
services that are of extended duration and are individually planned and
coordinated'. The ACT Government further argued that this change has resulted
in some children—who were previously eligible for supports—being deemed
ineligible under the new criteria and unable to have their packages renewed.
ASPECT highlighted that changes to the criteria are placing Partners in
the difficult situation of having to explain to families that their child no
longer meets the NDIS eligibility criteria and helping them to access
During the hearing in Melbourne on 8 November 2017, Mr Peter de Natris,
Special Adviser, Early Childhood Early Intervention, NDIA, told the committee
that a number of factors are taken into consideration when determining whether
a child meets the ECEI criteria of the Scheme:
Where a child is presenting with something that might be
deemed as 'on the cusp', we are asking our partners to make professional
judgments as to the right pathway for them to be supported. It is difficult to
sit in front of a committee such as this and say, 'We can determine that by
saying this is the point that that happens,' because it is not only the delay
or what the screen is throwing up; it is about the environment the child is in
and it is about understanding the full impact of how you might best support
those primary caregivers, parents, and that child going forward[...]Understanding
what triggers access is quite grey. There are many leading paediatricians whom
I talk to on a regular basis who have said to me, 'And that's the way it should
be.' It shouldn't be that you just go: diagnosis; you're in. There needs to be
a far richer exchange of information and decisions brought to bear around that.
Severity of developmental delay
The committee received concerns regarding ambiguity around the severity
of developmental delay required to gain entry to the Scheme.
The ACT Government was concerned that the NDIA's Operational Guidelines are
being interpreted to mean that children with only one area of delay are not
eligible for the Scheme.
The Queensland Government requested the Agency clarify eligibility arrangements
for these children.
Speech Pathology Australia was concerned by reports that families have
been told that children are required to need support from more than one allied
health practitioner in order to be gain entry to the Scheme under the ECEI
Speech Pathology Australia argued that this could be inappropriate for some
children, as support may best be delivered by one particular professional at
particular points in the child's development.
In response to questions on notice, the NDIA clarified that the term 'developmental
delay' is used in early childhood when a child's development is slower to
develop in one or more areas compared to other children of the same age.
It clarified the situation for children with a single developmental delay:
If a child presents with a single developmental delay that
has a functional impact on daily life, and this delay does not impact on the
child’s other developmental domains which are developing age appropriately,
this single developmental delay is addressed by mainstream services. Children
in this circumstance can be assisted by the Early Childhood Partner to connect
to appropriate alternative support services. The National Disability Insurance
Scheme does provide for access if the single development delay is of such a
significance that that the supports required for this child evidence the need
for coordinated, longer term, multidisciplinary service response that is
extended in duration.
Emphasis on diagnosis
Although the NDIS ECEI Approach is not intended to be diagnosis-driven,
lack of clarity around eligibility criteria appears to be compelling families
to obtain a diagnosis as a way of demonstrating eligibility for the Scheme. For
example, the committee received feedback that 'decisions about eligibility for
the NDIS focused solely on diagnosis and did not give consideration to their
child's functional needs and capacity'.
Submitters argued that, as diagnosis can be uncertain for some time,
emphasis should be firmly placed on children's developmental vulnerability and
Changes to existing programs is
Submitters highlighted that the eligibility criteria of previous
Commonwealth and State programs are being confused with the criteria for the
In NSW, for example, the State Government's Stronger Together Initiative
supported children with a wide range of impairments in contrast to the NDIS
which defines more narrowly who is able to be supported through a funded Plan.
However, this difference 'is not well understood yet by early childhood
intervention providers and other services referring children for supports'.
Changes to referral pathways
Providers in the Hunter Region argued that disruptions to referral
pathways are also confusing families and providers involved in the ECEI
Approach. The submission from Firstchance et al identified that, in the trial
sites from 2013–2015, natural referral pathways were disrupted when families
were required to go to the NDIA to test their child's eligibility for the
Scheme, but the processes have now changed back again.
ANAO report on NDIS access controls
Specifically on the issue of access decisions, the ANAO tabled its audit
report Decision-making Controls for Sustainability—NDIS Access in
October 2017. The audit found that, between 1 July 2016 and 31 March 2017, the
Agency implemented controls to ensure that access decisions are consistent with
legislative requirements, but these have been inconsistently applied. The ANAO
acknowledged that, at August 2017, the NDIA is developing an integrated
assurance framework to enhance decision-making controls.
The ANAO reported that it observed legislative and administrative
non-compliance that potentially affected the transparency and accuracy of
access decisions. The audit found limited evidence that the Agency monitored
training completion by access decision-makers. It also found that the Agency
had not established effective processes for internally reviewing access
decisions, although it anticipated improvement as a result of new procedures
introduced in May 2017.
The audit found that the access process was not well supported by the
Agency's ICT system, but acknowledged that new ICT functionality was
implemented from July 2017.
The committee acknowledges the efforts being made by the NDIA to
continually improve the operation and access to the ECEI pathway.
However, the committee understands concerns regarding the ECEI eligibility
criteria, and is of the view that unclear eligibility criteria increase risk of
misinterpretation and conflicted understanding. The repeated confusion over
whether one, or more than one area of developmental delay determines access to
the ECEI pathway illustrates that more work is required to clearly articulate
which children will be eligible for support. Publication of clearer guidance
around all aspects of entry to the pathway would assist all stakeholders.
The committee recommends that the NDIA publish clear and comprehensive
guidance around the eligibility criteria for children with developmental delay on
The NDIA developed List D—Permanent Impairment/Early intervention,
under 7 years – no further assessment required to streamline the access
process for children under seven years of age. Where a child under seven years
has been diagnosed with a condition on List D, the NDIA considers that the
child meets the early intervention requirements without need for further
evidence. If a child's condition is not on List D, families and carers must
provide evidence of the impact of the condition on the child's life.
Submitters raised several concerns relating to List D. For example, it
was argued that:
it disadvantages families of children with rare or non-diagnosable
there are an ever-expanding number of genetic conditions being identified
with new technology that will need to be incorporated into the list;
there are conditions known to have similar levels of impairment to
conditions on the list which have been excluded; and
the list disadvantages those without a specific aetiology for
their developmental delay or disability.
The Productivity Commission's Position Paper on NDIS costs, released in
June 2017, argued that List D can be useful, as it places less onus on families
to demonstrate eligibility; reduces the administrative burden on the Agency;
and provides some certainty to families. However, it can also represent an
overly-generous gateway and stifle exits from the Scheme (as a child would
remain eligible for the Scheme so long as their condition is present, even if
early intervention benefits have been realised).
Furthermore, the presence of a diagnostic list can run counter to the insurance
principle if it leads to the entry of children who are unlikely to benefit from
ECEI Partner, Noah's Ark, argued that, while diagnosis can predict risk
factors, it cannot predict the extent of the impact of a disability on an
The Productivity Commission's final report on NDIS costs suggested there
needs to be an expedient process to change the list as new information becomes
available, and that the process should be transparent. It argued that
transparency would help the public understand the purpose of the list, and why
some conditions are included and others not.
Several submitters agreed with the Productivity Commission and called on
the NDIA to provide a public explanation as to how List D was determined.
In response to questions on notice, the NDIA advised that List D was
'originally created by the NDIA based on advice from a health professional'.
A description of the amendment process was also provided:
The inclusion of an additional condition to any of these
lists is a policy decision made by the CEO from time to time, as the need
arises. Changes to the policy are then reflected in updated NDIA Operational
Guidelines. These lists are not exhaustive and in no way suggest that a person
with a condition different to those listed would not have a permanent
impairment that results in substantially reduced functional capacity. For
people with a condition which is not on the aforementioned lists, they will be
asked to provide further evidence of their substantially reduced functional
capacity and how that is attributable to a permanent impairment to meet all the
elements of the disability requirements in section 24 or section 25 of the NDIS
The NDIA advised that a review of its Operational Guidelines (including
List D) is scheduled to occur annually in consultation with relevant
stakeholders. The Agency welcomed feedback from any person who wishes to
provide input on its practices or processes, and directed them to the Feedback
Manager of the Technical Advisory Team.
While the committee accepts that the list is intended to streamline
access decisions, by placing emphasis on diagnosis, List D runs the risk of
introducing inequity by benefitting families of children with a diagnosed
condition over those without a diagnosis. Moreover, families may attempt to
obtain a costly diagnosis to expedite entry to the Scheme. The reported confusion
has informed the committee's view that the NDIA should reiterate that entry is
based primarily on the likely developmental trajectory of a child's condition.
The committee agrees there should be transparency around how List D is
determined and how new conditions are incorporated.
The committee recommends that the NDIA publish information on its
website about how List D is determined and how new conditions are incorporated.
The Paediatric Evaluation of Disability Inventory – Computer Adaptive
Test (PEDI-CAT) is being used by Early Childhood Partners to determine, in
combination with other information, the severity of functional impact in
children with a disability or developmental delay, and their required level of
Partners are required to make professional judgements about a child's
abilities using the scores of the PEDI-CAT, in addition to their own
observations and interviews. Partners then determine the most appropriate
support pathway for that child.
It is unclear to the committee what other tools, assessments, or
processes are currently being used by Partners to supplement PEDI-CAT assessments.
The Royal Institute for Deaf and Blind Children submission argued that
PEDI-CAT questions are often inappropriate, and can be upsetting for families
who have children that may not be able to complete tasks independently.
The Royal Children's Hospital argued that, whilst standardised
questionnaires may be useful to quantify some developmental issues, they do not
provide an indication of the family's needs.
Concerns were also raised that there is potential for PEDI-CAT results
to be misinterpreted.
Noah's Ark questioned the reliability of using an algorithm to interpret scores
and supports for children:
We understand that whilst the authors of the PEDI-CAT do not
provide for a total score that sums across all four domains, the ECIA Partners
are using an algorithm that has been developed to determine severity ratings.
It has been reported that ECEI planners use the T-score (without referring to
the standard area of measurement) on the algorithm to determine the level of
severity, sometimes in isolation, and to determine subsequent funding. As this
algorithm is not publicly available, we are unsure of its reliability and
utility, if any.
Submitters highlighted that inexperienced personnel that are unfamiliar
with the tool's limitations could misinterpret its results.
Many argued that assessment tools, such as the PEDI-CAT, should not be used in
isolation to determine the eligibility or level of supports required for
children under the NDIS.
Tracking short-term change
The NDIA requires Early Childhood Partners to capture changes in
children's performance following the provision of short-term intervention by
However, experienced stakeholders from within the sector argued that the tool
is not sensitive enough to measure change over a short period of intervention.
Noah's Ark argued that research into the sensitivity and responsiveness of the
PEDI-CAT for young children needs to be conducted before the tool can be
confidently used to track short term change in this manner.
Assessment of children with hearing
Dr Jim Hungerford, Chief Executive Officer, The Shepherd Centre, argued
that the PEDI-CAT is also unsuitable for assessing children with hearing loss:
The PEDI-CAT for paediatric hearing loss is totally
unsuitable because it is based on the observation of already present deficits.
For a baby with hearing loss, there is nothing that you can observe in that
instance. We're required in New South Wales to use PEDI-CAT on all of the
children we're supporting, and with every single child the PEDI-CAT rating is
well below their actual needs rating...
Dr Hungerford advised the committee that while the NDIA is developing an
alternative assessment tool specific to hearing loss, it had not disclosed how
ratings would be assigned; therefore, questions regarding its suitability as an
assessment tool for children with hearing loss remain.
of children with autism
Several submitters argued that the results of the PEDI-CAT are often not
a true indication of a child's functional capacity.
Partners reported that children
presenting 'moderate-to-severe' autism are often classed as having 'mild'
autism when assessed using the PEDI-CAT tool.
The Victorian Autism Specific Early Learning and Care Centre explained
why the PEDI-CAT is ill-suited for assessing the functional capacity of
children with autism:
Using the PEDI-CAT, despite having significant impairments,
children with ASD may score as requiring little support due to being young and
physically mobile. Families have expressed concerns that they were asked to
answer questions based on the skills that their child could or could not
physically perform rather than on the skills that their child functionally uses
in everyday life. For example, a child may be physically able to put their
socks on, however may not perform this skill during daily routines. Given that
children with ASD can often have challenges with using skills functionally,
questions should be answered on the basis of what children consistently do
rather than what they are physically able to do.
ECEI Partner, ASPECT, reported having to circumvent PEDI-CAT results in
order to justify appropriate levels of support:
We are continuing to use a tool (PEDICAT) and we have
concerns about the efficacy of this tool. It does not guide the development of
planning in a meaningful and functional way. One of the flaws we have seen is
that the tool does not identify the significant needs of many children with
autism who score as having mild or moderate needs...The results of the PEDICAT
are often not a true indication of a child's functional needs e.g. many of our
children have scored in the mild range, however still present with functional
difficulties, which means we need to provide much more detailed rationales
regarding why they require the supports as outlined in their planning tool.
The Commonwealth Ombudsman argued that the PEDI-CAT is unsuited to
assessing children with autism, as it was developed primarily to assess
children with cerebral palsy and is focused on physical impairment needs.
More appropriate assessment tool
Submitters raised concerns that children with autism are being assessed
by the PEDI-CAT tool rather than the PEDI-CAT ASD tool, which has been modified
for autism spectrum disorder (ASD).
The Victorian Autism Specific Early Learning and Care Centre explained
that the PEDI-CAT ASD tool measures the skills children with autism consistently
perform rather than what they are physically able to do in a more sensitive way
than the PEDI-CAT.
The Victorian peak body for people with autism, AMAZE, argued that the
PEDI-CAT ASD should be used as the NDIA's recommended assessment tool for
children in this cohort. However, it cautioned that the tool is yet to be
validated for the Australian population.
AMAZE emphasised that 'there is currently no single functional measure
which captures the range of difficulties young autistic children can present
Standardising assessment and
diagnostic processes for children with autism
Given the lack of consistent process across Australia, the Autism CRC
has been researching the identification of 'behavioural markers' for ASD in the
first two years of life, and has developed new methods for identifying infants
with a high likelihood of being on the autism spectrum. These early
identification methods will be trialled within GP practices around Australia.
Autism CRC highlighted that, if the approach is found to be successful,
it will be Australia's first nationally consistent method for developmental
surveillance and has significant promise in providing the NDIA with a clear
process for determining ECEI eligibility and providing infants with
intervention supports at the earliest possible age.
Autism CRC has also partnered with the NDIA to develop the first
Australian guideline for ASD diagnosis, with the aim of describing an accurate,
standardised, diagnostic process that is acceptable to autistic individuals and
their families. The guideline was released for public feedback in September
2017, with a final version expected to be published and ready for
implementation in January 2018.
While diagnosis is not necessary to commence intervention support under
the ECEI Approach, Autism CRC argued that a consistent process would assist the
NDIA to deliver targeted intervention supports.
The way forward
Submitters called on the NDIA to review its use of the PEDI-CAT for
children and seek more appropriate alternatives.
Some suggested using the Ages and Stages Questionnaires in place of the
ECIA NSW/ACT argued for commissioning research into an alternative system and
developing an appropriate assessment tool for children age 0–6 with
developmental delay and disability.
During the hearing in Melbourne on 8 November 2017, NDIA officials
emphasised that the PEDI-CAT is not the only assessment used to determine the
level of supports required for each child, but is used in conjunction with other
There have been concerns raised about the effectiveness and
validity of the PEDI-CAT assessment tool and how the PEDI-CAT is applied to
determine support needs of the child. We do want to put on record that the
PEDI-CAT is not the sole determinant of the child's severity level. The
PEDI-CAT provides information regarding strengths in a child's development in
addition to areas of the development that are delayed. The PEDI-CAT result is
used in combination with a wide range of other information, including parent
reports and the use of other functional assessment tools that the expertise of
our partner will bring to bear.
The NDIA highlighted that Partners have been commissioned due to their
skills in early childhood intervention, and are thus expected to conduct a thorough
assessment of each child's and family's needs using their early-childhood
The Agency confirmed that Early Childhood Partners are currently using
the PEDI-CAT tool in their assessment of children with ASD, not the PEDI-CAT
ASD. It noted that, while no qualifications are required to administer the
tool, Partners have typically employed a mix of paediatric, allied health and
early childhood professionals.
Under Part 7 of the NDIS (Becoming a Participant) Rules 2016, and
Part 4 of the NDIS (Supports for Participants Rules) 2013, the NDIA is
required to specify what assessment tools it uses in its Operational
Guidelines. It is not possible to determine what assessment tools, other than
the PEDI-CAT, are in use.
The Agency's submission to the Productivity Commission's study into NDIS
Costs indicates that, in 2014, the NDIA identified 11 functional assessment
tools (plus the World Health Organisation Disability Assessment Schedule
version II for disability types where no specific tool could be identified) and
validated these for the purpose of the NDIS. These tools informed the reference
packages, which became the basis upon which reasonable and necessary supports
The committee expects the Agency to comply with its legislative
obligations and publish information about what functional assessments are in
The committee recommends that the NDIA publish information on all of its
functional assessment tools currently in use.
The committee recommends the NDIA clarify how it uses assessment tools, and
specifically, how results are used to determine eligibility and level of
funding of children with disability or developmental delay.
The committee is concerned by reports that the PEDI-CAT tool is unsuited
to assessing the functional capacity of children with a developmental delay,
including those with ASD, yet it is being used by the NDIA and its Partners to inform
access and funding decisions and track children's developmental progress. The potential
inaccuracy of the PEDI-CAT in determining a child's functional needs leads to
broader concerns about whether the number of children with developmental delay
accessing the NDIS and the level of their delay is correct.
The committee acknowledges that the NDIA is continuing to refine its
tools, but is of the view that the Agency should be driving innovation and
research in this space. The committee considers there is a need for a
fit-for-purpose assessment tool that can be used in Australia for children with
ASD to be co-designed and developed with the sector.
The committee recommends the NDIA liaise with the sector to co-design
and develop a purpose-built assessment tool for children with ASD in Australia.
Navigation: Previous Page | Contents | Next Page