Submission
In response to the Joint Standing Committee on the National
Disability Insurance Scheme
Provision of Services under the
NDIS Early Childhood Early
Intervention Approach
Submitter details
JFA Purple Orange
104 Greenhill Road
Unley SA 5061 AUSTRALIA
Telephone: + 61 (8) 8373 8333
Fax: + 61 (8) 8373 8373
Email: admin@purpleorange.org.au
Website: www.purpleorange.org.au
Facebook: www.facebook.com/jfapurpleorange
Contributors
Maria Vnuk, Project Officer
Jackie Hayes, Leader Social Policy and Initiatives
Robbi Williams, CEO
About the Submitter
JFA Purple Orange is a non-government, social profit
organisation. Anchored on dialogue with people living with disability, their
families, service providers, government and other stakeholders, we seek to
identify policy and practice that has the prospect of advancing peoples
chances of a good life. Our work is anchored on the principles of
Personhood and Citizenhood. Our work includes research, evaluation,
capacity building, consultancy, and hosted initiatives.
© August 2017 Julia Farr Association Inc.
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Contents
1.0 Summary ……………………………………………………………………………………………………………………. 3
2.0 Purpose ……………………………………………………………………………………………………………………… 3
3.0 Introduction ……………………………………………………………………………………………………………….. 4
4.0 Overarching Principles ………………………………………………………………………………………………….. 4
5.0 Key issues …………………………………………………………………………………………………………………… 6
5.1 Commissioning of ECEI Partners …………………………………………………………………………………. 6
5.2 Access to a NDIS Plan based on need ………………………………………………………………………….. 8
5.3 Assessment process for access to a NDIS plan or early investment service ………………………. 9
5.4 Knowledge capital ……………………………………………………………………………………………………. 9
5.5 DSOs and peer support …………………………………………………………………………………………… 10
5.6 Measuring outcomes ………………………………………………………………………………………………. 10
6.0 Conclusion and recommendations ……………………………………………………………………………….. 10
7.0 Request to meet ………………………………………………………………………………………………………… 11
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1.0 Summary
The National Disability Insurance Scheme (NDIS) is a critical social welfare reform in Australia.
A focus on achieving the best outcome via a family-centred approach that supports greater
inclusion in mainstream settings and builds child and family capacity is proven to have positive
effects in early childhood intervention. The NDIA has designed the Early Childhood Early
Intervention (ECEI) approach using this strong research and evidence base.
This approach will help identify the type and level of early intervention support each child
needs to achieve their best outcomes. Research has shown providing children and families
with timely, comprehensive and well integrated early intervention support leads to better
longer-term outcomes for children, fostering inclusion and participation in their environment.
As an insurance scheme, the NDIS also uses effective early intervention to reduce its medium
to long-term liability.1
2.0 Purpose
JFA Purple Orange welcomes the opportunity to contribute to the Joint Standing Committee
on the National Disability Insurance Scheme Provision of Services under the Early Childhood
Early Intervention (ECEI) Approach. This submission is based on the views of JFA Purple
Orange. This submission provides an outline of the views of JFA Purple Orange on early
investment in general, with specific reference to the following terms of reference: (a) the eligibility criteria for determining access to the ECEI pathway; (f) the evidence of the effectiveness of the ECEI Approach;
(h) the adequacy of information of potential ECEI participants and other stakeholders; (j) the principle of choice of ECEI providers;
(l) any related matters
1 https://www.ndis.gov.au/html/sites/default/files/documents/Research/NDIA-ECEI-Approach-1.pdf
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3.0 Introduction
JFA Purple Orange is the social policy agency of the Julia Farr group, a trio of social profit, non
government organisations based in South Australia, working to improve the life chances of
people living with disability. The Julia Farr group (JFA Purple Orange, Julia Farr Housing
Association, and the Julia Farr Trust and Julia Farr MS McLeod Benevolent Funds) and its
predecessor organisations have been involved with the disability community, older people
and other vulnerable groups for more than 130 years.
We are an independent, non-government organisation that fosters innovation, shares useful
information, and promotes policy and practice that support and improve the life chances of
people living with disability.
4.0 Overarching Principles
It is clear from the available research there is a wide range of endeavours being undertaken
in an attempt to deliver an early (timely) intervention (investment), borne out of a desire to
be helpful to people and families early in their experience of disability.
First, a comment about terminology. The word intervention implies the removal of personal
control from person and family, and professionals taking over. If the goal of intervention is
to grow a person’s or family’s capacity, resilience and life chances, then the word intervention
is ill-suited. No one would routinely described learning, a living-waged employment
opportunity, joining a club, buying a car, taking a vacation, starting a family, and so on, as
interventions. Good lives, good life chances, are not characterised by intervention, but by
investment. Therefore, the phrase Early Investment will be used for the remainder of this
submission.
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JFA Purple Orange’s work on early investment2 includes a conceptual framework for thinking
about early intervention, which interprets ‘intervention’ as ‘investment’ and which
encompasses the following ‘process’ characteristics:
a Radar (timing) – effective mechanisms for early detection of emerging
issues/circumstances where a person is likely to need assistance a Compass (orientation) – a values framework that ensures that mechanisms are
orientated towards ‘front-foot’ capacity-building or capacity-recovery in the context
of ordinary valued life roles and milestones
a Map (strategy) – an early intervention technique/ methodology needs to give
detailed measurable guidance on how to move a person’s circumstances from A to B an Engine (resource) – an early intervention technique needs adequate competent
resourcing (grunt, muscle) to get the job done.
Importantly, this early investment framework is further underpinned by JFA’s Model of
Citizenhood Support.3 The Model presents four main outcome areas against which an early
intervention initiative may be measured for its effectiveness in capacity-building, capacity
recovery or capacity maintenance. The four ‘content/outcome’ areas are:
Personal Capital
Knowledge Capital
Material Capital
Social Capital
Personal Capital refers to the person’s characteristics, strengths, and outlook. Applied to the
topic of Early Investment, endeavours that increase Personal Capital would include clinical
interventions that create a lasting change, but would also include endeavours that build a
child or family’s outlook on their own strengths and what might be possible in their life.
2 Robbi Williams, Julia Farr Association
3 Williams, R. (2013). Model of Citizenhood Support, 2nd Edition. Julia Farr Association Inc. Adelaide.
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Knowledge Capital refers to the presence of information that can assist the person to make
informed choices towards a good life. Early Investment endeavours that support this include,
for example, information to families about programs, or the work of a well-informed case
coordinator who can pass on a mine of practical relevant information to a person or family.
Material Capital refers to the presence of tangible material resources that are demonstrably
helpful to the person and family. Early Investment endeavours that support this include
schemes focusing on aids and adaptations, home and transport modifications,
accommodation support, and direct personal supports arranged through case coordination.
Critically, it also includes access to public resources that most people will take for granted –
public transport, public buildings and spaces, education, and health.
Social Capital refers to the connection (the opposite of isolation) and fellowship (the opposite
of loneliness) that deliver natural supports and a sense of belonging to a person and family.
Throughout human society it is easy to find examples of people with common interests or
concerns coming together for mutual support and advancement. Early Investment
endeavours that support Social Capital include family/carer supports that build peer support
networks for people with a common experience of disability, where people can gain hope,
knowledge, practical support and fellowship from others on a similar journey.
5.0 Key issues
JFA Purple Orange supports early investment as it can reduce costs to the NDIS in the long
term. The Early Childhood Early Intervention (ECEI) pathway is the gateway for a child 0-6
years with a disability or developmental delay to enter the Scheme. Under the ECEI approach
a family seeking support for their child is connected to an ECEI partner in their local
community who can assess the child’s and family’s needs.
5.1 Commissioning of ECEI Partners There appears to be no nationally consistent approach on selection and implementation of
the ECEI approach with different options for ECEI Partners in each state. For example, in
South Australia the 2016 tender was for one organisation for the whole state and excluded
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any organisation that was a registered NDIS provider. Currently there is no ECEI Partner in SA
and a temporary system is in place. This is of concern given that SA was the trial site for
children coming onto the NDIS and would have been an opportunity to test the ECEI approach.
The situation in other states varies: in Victoria there is one ECEI Partner for each rollout area
whereas in NSW 57 current ECEI providers are funded.
As with the Local Area Coordinator, it is important that the ECEI Partner is knowledgeable
about the local community and services. This reinforces the importance and benefit of
selecting local, well-established, deeply embedded, highly knowledgeable community
agencies to undertake the ECEI work.
This is particularly important as the ECEI Partner has several roles and depending on the child
living with disability and their family’s needs this can be: Information and linkages to mainstream support and services
Timely short to medium term supports such as family based education, parenting
support services and therapy Access to an NDIS Plan
In JFA Purple Orange’s 2015 report on planning4 commissioned by the National Disability
Insurance Agency we describe the planning elements the disability community prefers. As
discovered through an extensive consultation, people’s preferences are to plan in a
timeframe that suits them, using a methodology they find accessible, and undertaken with
someone they trust.
This arrangement also sets up the opportunity to ensure the participant has genuine choice
over where they get their planning assistance from. Noting that such assistance often
includes a blend of information, peer connection and capacity-building, this sets the scene for
the NDIS to invest in the role and value of Disability Support Organisations (DSOs) - agencies
4 JFA Purple Orange (2015) About pre-planning: An advisory report to the National Disability Insurance Agency (NDIA) on how people can best be assisted to prepare for the NDIS
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that provide information, peer connection and capacity building, and whose role was
contemplated in the original Productivity Commission work in 2011.
Recommendation
That ECEI Partners should be local, well-established, deeply embedded and highly knowledgeable.
5.2 Access to a NDIS Plan based on need
We note that it is critical that each child and family receives the right support and timely
support. The ECEI approach should not be used to restrict entry into the NDIS where this is
the appropriate response to the child’s needs. Further, there is a risk that children living with
disability who are ineligible for the NDIS will be diverted to mainstream early childhood
services that do not meet their needs. Commonwealth funding for programs such as Helping
Children with Autism and Better Start are being closed to new applicants. State and territory
funding is also likely to dry up because:
a) explicit calculations underpinning bilateral agreements mean those funds are
gathered up as part of the agreement and generically transferred to NDIS, or
b) implicit assumptions at the state/territory level that anything relating to disability and disability service delivery is now the business of the NDIS.
There is no guarantee that all current users of such services or newly diagnosed children who
would have received support under an existing program will be eligible for an NDIS
individualised funding package (IFP). This reinforces the role of continuity of supports for the
former and raises issues of potential gap in support for the latter group of children.
JFA Purple Orange recommend that bilateral agreements be reviewed to test the assumptions
underpinning the inclusion of the costs of such local services, and that the NDIS work closely
with states and territories to ensure the extent of the above ‘gap’ risks is fully known, scoped
and properly managed before local funding is withdrawn.
Recommendation
That a review process is undertaken to ensure that children living with disability who do not qualify for an individualised funding package are able to access early investment support.
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5.3 Assessment process for access to a NDIS plan or early investment service
Access to early investment services delivered by an ECEI Partner or to a NDIS Plan requires
appropriate assessment. If the goal of early investment is to reduce the gap between where
a child is now and the goal of participation in community life and the economy, the
assessment tool used should clearly measure the outcomes expected from the early
investment and where the child is now. We refer the Committee to the Citizenhood model5
as a way of framing how to plan for and measure improvements in a person’s life chances.
We further note the importance of consistency between outcome measures and assessment
measures. It is not coherent to measure outcomes (the hoped-for situation) in one way and
undertake assessment (the current situation) in another. Consideration should be given to
whether the current assessment tool for young children (the PEDI-CAT) is appropriate. It is
recommended the NDIA review its use of PEDI-CAT for children 0 – 7 years of age, and seek
sensitive and robust alternatives to the assessment of support needs in young children.
Recommendations
That the NDIA review its use of the PEDI-CAT for children 0-7 years of age
That the NDIS assessment instrument(s) be identical to the instrument(s) underpinning outcomes measurement
5.4 Knowledge capital
An early investment approach reduces expenses later in life. In JFA Purple Orange’s approach
to early investment, Radar refers to the timeliness of the initiative, the extent to which it is
available to the person and family at the time when it will be most helpful. This raises
questions about how the ECEI is brought to the attention of potential beneficiaries, and when.
An initiative will be no use to a person or family if they don’t know it exists, or aren’t
sufficiently informed of its intentions and benefits, or if it is not available (or is withdrawn) at
times when it might be most prized.
5 Williams, R. (2013) Model of Citizenhood Support 2nd Ed. Julia Farr Association, Adelaide
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JFA Purple Orange recommends that the NDIA build the evidence base on early investment
for children and families. The evidence base should include the valued role of peer support
and connections in information sharing and capacity building. This will assist parents to
choose supports for their children based on good information and knowledge and that early
investment supports improve outcomes for children living with disability and their families.
Recommendation
That the NDIA build the evidence base on early investment for children living with disability/ developmental delay and their families.
5.5 DSOs and peer support
The Australian government fund local community based DSOs to provide pre-planning
support to participants of all ages and their families, through peer support networks which
provide good up to date information about the ECEI and its approach under the NDIS. These
peer networks will emphasise a family-centred approach that supports greater inclusion in
mainstream settings and builds the capacity of young children and the family which is proven
to have positive effects in early childhood intervention.
5.6 Measuring outcomes To provide greater coherence between people’s circumstances entering the ECEI pathway
and measurement of subsequent return on investment, we refer to our earlier remarks about
the importance of the outcome measurement framework being identical to the assessment
framework, and being anchored on measuring the gap between a person’s circumstances and
ordinary valued life chances.
6.0 Conclusion and recommendations
JFA Purple Orange supports the ECEI approach to investment in children living with disability
early in their life to build their and their family’s capacity. This approach will help identify the
type and level of investment support each child needs to achieve their best outcomes. Early
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investment will maximise future opportunities to assist them into valued roles in community
life.
JFA Purple Orange recommends the following to ensure that the ECEI approach provides
timely, comprehensive and evidence-based supports which lead to better longer-term
outcomes for children and their families: That ECEI Partners should be local, well-established, deeply embedded and highly
knowledgeable
That a review process is undertaken to ensure that children living with disability who
do not qualify for an individualised funding package are able to access early
investment support That the NDIA review its use of the PEDI-CAT for children 0-7 years of age
That the NDIS assessment instrument(s) be identical to the instrument(s)
underpinning outcomes measurement That the NDIA build the evidence base on early investment for children living with
disability/developmental delay and their families
7.0 Request to meet
We would welcome the opportunity to meet with the Joint Standing Committee to discuss
the submission contents in more detail, and to provide additional information/perspective as
required.
For further information about this submission, please contact:
Robbi Williams
Chief Executive Officer
Julia Farr group
Phone: (08) 8373 8333
Email: admin@purpleorange.org.au
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