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POSITION PAPER

GAPS IN SERVICES FOR CHILDREN AGE 0-6

WITH DEVELOPMENTAL DELAY AND DISABILITY

April 2018

Early Childhood Intervention Australia NSW/ACT

Suite 607, 83 York Street

SYDNEY NSW 2000

Telephone: (02) 9873 2593

For further information contact

Margie O’Tarpey CEO

[email protected]

or Enis Jusufspahic, Manager

Sector Development/NDIS

[email protected]

mailto:[email protected]

mailto:[email protected]

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INDEX

INDEX 2

PART ONE - SUMMARY

EXECUTIVE SUMMARY 4

STATEMENT 5

RECOMMENDATIONS 5

CONCLUSION 10

PART TWO - OVERVIEW

INTRODUCTION 11

ABOUT THIS PAPER 11

THE CHANGING FACE OF EARLY CHILDHOOD 12

INTERVENTION UNDER THE NDIS

GAPS RESULTING FROM TRANSITION TO NEW 13

ECI SERVICE DELIVERY MODEL

PART THREE – AT RISK GROUPS 16

1. INELIGIBLE CHILDREN 16

1.1 Children age 0-6 ineligible for an individualised funding support 16

plan under the NDIS

1.2 Developmentally vulnerable children with behaviours of concern 17

1.3 Projections for ineligible children 18

1.4 Recommendations 19

2. AT RISK GROUPS 19

2.1 Culturally and Linguistically Diverse children and families 20

2.2 Aboriginal and Torres Strait Islander children and families 20

2.3 Pre-term infants 21

2.4 Rural and remote children and families 22

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3. FAMILIES 24

3.1 Parental capacity as key indicator of child developmental risk 25

3.2 Family support and parent/parenting support 26

3.3 Families experiencing vulnerability 28


PART FOUR – MAINSTREAM INTERFACE

4. MAINSTREAM AND COMMUNITY INTERFACE 32

4.1 Community services 32


4.2 ECI services, the ECEC sector and children’s NGO 33


4.3 Health 34


4.4 Education 36

(1) Children developmentally vulnerable when starting school 36

(2) Early Childhood Education and Care 37


4.5 Child Protection 38


REFERENCES 41

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PART ONE - SUMMARY

EXECUTIVE SUMMARY

This Paper was written to further explore the three core questions raised at the initial Early

Childhood Early Intervention (ECEI) Round-Table meeting held in November 2017, namely:

Further refinement of identified issues;

Exploration of solutions to the identified issues; and

Quantifying the numbers of children age 0-6 that are not National Disability

Insurance Scheme (NDIS) eligible but still require supports.

The paper aims to address:

a) The role, capacity and remit of each agency involved in the child’s life including

shared responsibilities;

b) The need for a common dataset across NSW Government services of children

with developmental delay and disability age 0-6; and

c) The best means of providing wrap around services for families and for children

experiencing vulnerability and who are at risk of developmental delay and

disability.

In summary the paper identifies “cohorts of children” who are not likely to be eligible for the

NDIS and children and their families who are at risk, who may or may not access or be

supported by the ECEI Partner and/or mainstream services. These are collectively

defined as the "Gaps" cohort.

Key indicators for discussion and reflection:

By the Financial Year 2019/20 there are likely to be 9,037 to 12,065 children with

delays in NSW that are not likely to receive an individualised funding support

package under the NDIS.

10 per cent of children under 5 in NSW have social/emotional behaviour problems.1

9 per cent of all NDIS participants are from Culturally and Linguistically Diverse

(CALD) backgrounds in NSW, where the CALD population makes up 25.2 per of all

NSW residents.

Aboriginal and Torres Strait Islander children age 0–14 years were more than twice

as likely as non-Indigenous children to have a disability (15.2% compared with

6.6%).2

Aboriginal and Torres Strait Islander children are nearly four times more likely to be

developmentally vulnerable in the language and cognitive skills domains.3

8.6 per cent of births in Australia were premature, which equates to 26,000 children.4

Children in rural, regional and remote areas are more likely to be developmentally

vulnerable than children in metropolitan areas.5

20.2% of Australian children in their first year of school in NSW were vulnerable in

one or more key areas of development and 9.6 per cent of children in NSW were

developmentally vulnerable on 2 or more domains.6

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9 per cent of all children attending community preschools in NSW were living with a

disability or additional needs, and about 85 per cent of community preschool

educators work with a child with disability.7

20 per cent of children in residential out-of-home-care in Victoria have a disability.8

ECIA NSW/ACT seeks to have an all of government response to the challenges and the

many opportunities this Paper identifies to:

Work across government;

Across agencies;

Across government and the Non-Government Organisation (NGO) sector; and

Within community and mainstream services in local communities.

We do not underestimate the challenges, but welcome the opportunity to put the spotlight on this important issue, for indeed children are our future.

STATEMENT

The ECIA NSW/ACT Position Paper affirms that

1. There will be children that can be broadly characterised as being at risk of

developmental delay who will need ongoing support and services in NSW following the

full transition to NDIS post June 2018 due to a multitude of reasons such as:

a. Eligibility for services including NDIS and other relevant services;

b. Availability of services in metropolitan, regional, remote and rural NSW;

and

c. Family complexity and parenting capacity.

2. Early Childhood Intervention (ECI) services are delivered best within a collaborative

“team around the child” approach (National Guidelines on Best Practice in Early

Childhood Intervention, 2016, ECIA). In order for this approach to succeed it is

necessary for ECI services to work closely with other services that support children age

0-6 including:

a. Early Childhood Education and Care;

b. Community Services;

c. Health Services including Mental Health Services; and

d. Child Protection.

3. Continuing policy alignment is required within and across NSW government agencies as

it relates to children age 0-6.

RECOMMENDATIONS

1. GENERAL RECOMMENDATIONS

1.1 ECIA NSW/ACT recommends an integrated whole of government working group be

established to undertake or investigate:

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1.1.1 A documented mapping profile of services that are currently provided for children with

disability and developmental delay, by NSW Government, across all regions in NSW

including:

Community services designed for children age 0-6 across NSW; and

Services delivered by NSW Health for children age 0-6 provided across the

15 Local Health Districts in NSW.

1.1.2 More granulated research and data analysis of participation rates of children age 0-6

and their families in relevant NSW Government services with respect to:

Children 0-6 and families defined in this Paper as being at risk of

developmental delay compared to service use for typically developing

children; and

Service availability and utilisation in metropolitan, regional, rural and remote

NSW.

1.1.3 Establishing common data collection and data sharing systems, to enable further

study of different cohorts of children accessing NSW Government’s early childhood

development and learning services, including a common data capture tool for all

children age 0-6, such as the Scottish Government’s My World Triangle.

1.2 All of NSW Government population based service planning for children age 0-6 and

families not eligible for the NDIS that will require supports from NSW government

services.

1.3 Develop a tailored pathway for different cohorts of children with developmental delay

including:

Children exhibiting complex behaviours;

Children with mild developmental delays and disability;

Child with moderate to significant delays and disability that have an NDIS

plan and require other support and services;

Children of parents with mental health conditions;

Children from families experiencing vulnerability including:

o Children engaged with the Child Protection system;

o Children from Culturally and Linguistically Diverse communities

including refugee or newly arrived migrant families from non-English

speaking backgrounds;

o Aboriginal and Torres Strait Islander children and families; and

o Children living in remote and rural NSW with limited access to

mainstream services and the community.

1.4 General training and up-skilling of the following agency staff with regards to

developmental delay and disability as it occurs in children age 0-6:

Community Services;

Child Protection;

Early Childhood Education and Care services; and

Health services.

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2. RECOMMENDATION REGARDING INELIGIBLE CHILDREN

2.1 NSW Government investigate and trial across different regions, program models that

take into account parent capacity building and support for families and their children

with challenging behaviour at risk of developmental delay such as the Got It! Model,

Triple P, Bringing up great kids and Parents under pressure.

2.2 Clarify the role and responsibilities of Adult Mental Health Services as it relates to:

Identification of concerns relating to parenting capacity of mental health

service consumers; and

Adult Mental Health Services’ role in supporting the parent in their parenting

capacity including referral to appropriate services for the parent and the child.

3. CULTURALLY AND LINGUISTICALLY DIVERSE CHILDREN AND FAMILIES

NSW Government investigate and support a community development approach that

addresses the low take-up of services by CALD families from disadvantaged

backgrounds such as the Community Hubs Model that is designed for

migrant/refugee women with pre-school age children.

4. ABORIGINAL AND TORRES STRAIT ISLANDER CHILDREN AND FAMILIES

An all of government response to supporting developmentally vulnerable Aboriginal

and Torres Strait Islander children age 0-6, given the degree of vulnerability for these

children, including:

Further data collection and increased community driven research with respect

to disability and Aboriginal and Torres Strait Islander people;

Mapping of culturally inclusive Aboriginal and Torres Strait Islander services

for children age 0-6 across NSW; and

Developing local approaches where culturally competent mainstream services

and Aboriginal controlled community organisations work in partnership to

support Aboriginal and Torres Strait Islander children age 0-6.

5. PRE-TERM INFANTS

NSW Health and the National Disability Insurance Agency (NDIA) continue to clarify

and formalise their respective roles and responsibilities relating to pre-term children

with specific reference to:

NSW Perinatal Services Network and respective Neonatal Intensive Care

Units and the Early Childhood Partners establish close working relationships,

in order to ensure smooth transition from neonatal services to early childhood

intervention, especially for children with vision or hearing loss at birth who

require immediate support; and

An integrated service response be developed to track and monitor the

development of children born prematurely.

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6. RURAL AND REMOTE CHILDREN AND FAMILIES

6.1 A coordinated approach in rural and remote NSW, involving Health, Education and

Community Service providers, with the Early Childhood Partner and Local Area

Coordinators, to provide outreach services, including telehealth facilities, to families

with children who have developmental delay and disability.

6.2 We endorse the Royal Australasian College of Physicians recommendation in its

2018-19 Pre-Budget Submission Paper which highlights the need for expansion in

home visit programs for young children in rural and remote areas.

7. FAMILIES EXPERIENCING VULNERABILITY

7.1 Establishment of regional case conferencing initiatives for complex families with a

child age 0-6 with an NDIS plan, which require supports from multiple NSW

Government services. The regional case conferencing initiative is to be based on

sound family centred practice and would feature:

Guidance on establishing roles and responsibilities of different agencies in

that specific set of circumstances;

Process, policies and documentation that support development of a plan for

working together which identifies responsibilities, timelines and outcomes;

Participants to consider how to pay for collaborative work (under the NDIS,

ECI providers need permission from the child’s parent to bill for collaborative

time from the child’s NDIS plan); and

Develop How To Guides, case studies and Frequently Asked Questions.

7.2 Expanding Family Support services such as MyTime and Brighter Futures to meet

the needs of families experiencing vulnerability through an outreach based and

collaborative approach.

8. MAINSTREAM AND COMMUNITY INTERFACE

8.1 Mapping study of community services designed for children age 0-6 across NSW,

see Recommendation 1.

8.2 General training and up-skilling of all community services with regards to

developmental delay and disability as it occurs in children age 0-6.

9. COMMUNITY SERVICES

We recommend a mapping study of community services designed for children age

0-6 across NSW.

10. NGO, ECI SERVICES AND THE ECE SECTOR

10.1 The establishment of a Strategic Reference Group for all children’s NGOs, including

family support services, universal community services, early childhood intervention

service providers and Early Childhood Education (ECE) service providers.

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10.2 Endorsement of ongoing consultation and partnerships with the NGO sector for

Strategic Commissioning of services for children with developmental delay age 0-6

including services for families and inclusion of children with developmental delay

across the spectrum of NSW government services.

11. HEALTH

11.1 ECI services to work closely with the Universal Health Home Visiting Service to

improve routine screening of all very young children.

11.2 A mapping study of services delivered by NSW Health for children age 0-6 provided

across 15 Local Health Districts in NSW, see Recommendation 1.

11.3 We endorse the Royal Australasian College of Physicians recommendation in their

2018-19 Pre-Budget Submission Paper which emphasises the need for,

“new investment in paediatric child health services that are universally available, but

with a scale and intensity that is proportionate to the level of disadvantage so that

health policies, programs and initiatives funded by the Commonwealth Government

can begin to address inequities in child health.” (A Healthy Future for all Australians:

RACP Pre-Budget Submission 2018-19, Royal Australasian College of Physicians,

page 9).

12. EDUCATION

12.1 General training and up-skilling of all Early Childhood Education and Care services

with regards to developmental delay and disability as it occurs in children age 0-6.

12.2 Schools establish regional referral pathways with Community Health, Early Childhood

Partner and Local Area Coordinators.

13. CHILD PROTECTION

13.1 Establishing a reference group to discuss the interface between the Child Protection

systems as it relates to children age 0-6, with specific reference to:

Identifying families at risk of relinquishing a child with disability age 0-6;

Map appropriate pathways for family preservation and family support services

for families at risk of relinquishment of a child age 0-6; and

Improved data collection on children in care with developmental delay and

disability age 0-6.

13.2 General training and up-skilling of child protection staff with regards to developmental

delay and disability as it occurs in children age 0-6.

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CONCLUSION

We have highlighted issues regarding service gaps, identified at risk groups, reflected on

implications for children and families in NSW and made a number of recommendations for

your consideration. ECIA NSW/ACT believes that any move forward must focus on the

following principles:

That early childhood intervention must be provided early;

Adherence to ECIA National Guidelines for Best Practice;

Collaboration across government and non-government sectors; and

An approach that fosters local innovation and solutions.

We welcome the opportunity to work with government as part of a Strategic Reference

Group for all children’s NGOs on the following strategic priorities:

Shared Outcomes Framework for early childhood services; and




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PART TWO - OVERVIEW

INTRODUCTION

This Position Paper follows on from the Discussion Paper9 produced by ECIA NSW/ACT

ahead of the initial ECEI Round Table10 held on 29 November 2017. The Round Table was

attended by a range of NSW government agencies including Department of Premier and

Cabinet, Department of Family and Community Services, Ageing, Disability and Home Care

(FACS ADHC), the Department of Family and Community Services (FACS), Department of

Education: Early Years Directorate, ECIA NSW/ACT and key Early Childhood Intervention

non-government service providers.

At the initial ECEI Round Table there was broad acknowledgement that service gaps which

existed before the introduction of the National Disability Insurance Scheme (NDIS) have

been carried over to the new environment. It was noted that FACS ADHC had primary

carriage for addressing interface issues between the disability sector and the other

government systems and community services. It was noted that each government agency is

aligning its policy framework with the NDIS as FACS ADHC winds down.

It was agreed that respective service systems operate independently, and that more work

needs to occur in order to deliver services that are wrapped around the child and their family

across different government systems.

Following group discussion about priorities for a follow-up meeting, it was decided that

additional discussion was required, focusing on:

a) Further granularisation of issues;

b) Quantifying the numbers of children age 0-6 that are not NDIS eligible but still

require supports; and

c) Solutions to the identified issues.

ABOUT THIS PAPER

This Paper was written to answer the three issues above as well as addressing:

a) The role, capacity and remit of each agency involved in the child’s life including

shared responsibilities;

b) The need for a common dataset across NSW Government services accessed by

children with developmental delay and disability age 0-6; and

c) The best means of providing wrap around services for families and for children

experiencing vulnerability, at risk of developmental delay and disability.

This Paper seeks to:

a) Clearly articulate gaps in the current service provision environment related to:

i. Children who are not likely to be eligible for supports under the NDIS;

ii. Children and families that are at risk and have historically low

participation rates in government and community services;

iii. Children who are not identified in a timely manner with developmental

delays; and

iv. Gaps in access to mainstream services and the community for

children with NDIS plans.

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b) Provide a foundation for a mapping exercise of all government and community

services for children age 0-6, and identify issues regarding access, regional

availability and impact on child development.

THE CHANGING FACE OF EARLY CHILDHOOD INTERVENTION

Ageing, Disability and Home Care (ADHC) part of Family and Community Services NSW

(FACS) administered and delivered early childhood intervention services for children age 0-8

in NSW under the 0-8 Strategy11 which itself was part of the Stronger Together Two12 reform

package for disability support services in NSW.

With the transition to the National Disability Insurance Scheme (NDIS) the NSW government

has announced the transfer of all government disability services to the non-government

sector in NSW13 including all staff and assets, and winding down ADHC itself.

Services were to be delivered by Early Childhood Partners under the NDIS Early Childhood

Early Intervention (ECEI) Approach which were progressively tendered for across different

jurisdictions in Australia. The transition occurred differently in NSW with the appointment of

58 transition providers consisting of existing Early Childhood Intervention (ECI) providers in

NSW, for the duration of the transition ending on 30 June 2018.

Under the ECEI Approach the role of the Early Childhood Partner is to build a profile of the

child and their family’s circumstances and needs, provide short term interim supports, and

support the child’s family to access mainstream services and the community. The Early

Childhood Partner is also responsible for completing a request to access the NDIS,

developing the child’s plan, supporting the family to implement the child’s plan, and

reviewing the plan at the agreed time.

Eligibility for Early Childhood Intervention under the NDIS is clearly defined under section 9

of the National Disability Insurance Scheme Act 2013 (NDIS Act 2013) which may or may

not entitle a child to an individual funding support package under the NDIS. Those who are

not eligible will be supported by the Early Childhood Partner to access mainstream services

and community supports under the NDIS ECEI Approach.

By way of contrast, in the historical ECI service system in NSW, ECI service providers

received block funding under Stronger Together 2 which each service allocated to priority

groups and families based on local planning under a wide gateway.

ECIA NSW/ACT is concerned that an unintended consequence of the reforms is that the

children and families experiencing vulnerability may miss out on crucial services due to

service gaps between Early Childhood Intervention Services under the NDIS and other

government services; this is discussed in the next section.

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GAPS RESULTING FROM TRANSITION TO A NEW ECI SERVICE DELIVERY

MODEL UNDER THE NDIS

As noted earlier, service gaps between early childhood intervention and other government

systems were acknowledged at the initial Round Table meeting.

We note that due to historic delays for access to wrap around services, ECI service

providers have incorporated elements of these wrap around services such as counselling,

family supports, supported playgroups and parenting groups into their service model by

hiring staff using their Stronger Together 2 block funding to provide these services.

These wrap around services do not fit the ECI model under NDIS and such are separated

out from the service provision model as defined in the NDIS Price Guide which focuses on,

“specialised individual therapy for early childhood delivered in a coordinated multidisciplinary

approach.”14

NSW ECEI Transition Providers have noted a number of issues about working with other

government funded services during the NDIS transition which are discussed in depth in this

Paper. The issues can be briefly summarised as:

Long waiting lists for Community Health and Family Support services;

Lack of clarity as to responsibility of the NDIS and other government systems;

Responsiveness of general community services to the needs of children with

developmental delay and disability;

Lack of a coordinated approach for families experiencing vulnerability with children

with developmental delay and disability; and

Long waiting lists for developmental assessments.

We strongly believe that the issues highlighted above existed well before the NDIS

transition, have been further complicated during transition, and are highly likely to be carried

over to the full scheme NDIS. However we do note the very significant pressure on other

government services during the transition to the NDIS.

We note that the interface issues between the NDIS and other government systems as they

relate to children 0-6 are likely to be resolved in fullness of time. Early Childhood Partners

are to start providing ECEI services in NSW from June 2018; at this early stage it is not clear

what impact these arrangements will have on children and their families as well as the NSW

ECI sector.

We believe that the estimates of children not likely to be eligible for NDIS supports who will

seek supports from other government services are inaccurate and that there are likely to be

more children than anticipated in the NDIA’s actuarial figures. This claim is based on

extensive anecdotal feedback of increasing requests for assistance from families which we

believe will ultimately result in downstream pressure on mainstream services as not all

children will be eligible for NDIS. We are concerned that these children not eligible for an

NDIS package may fall through the cracks while waiting for access to other government

services.

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Administrative arrangements pertaining to the interface between the NDIS and

other government systems

The roles and responsibilities of other government systems as they relate to people with

disability and the NDIS are set down in the Principles to Determine the Responsibilities of

the NDIS and Other Service Systems (Applied Principles)15 and in Schedule 1 of the

National Disability Insurance Scheme (Supports for Participants) Rules 201316. The Joint

Standing Committee noted in its February 2018 report on the Transitional Arrangements for

the NDIS that there is significant variance in the application of rules set out in the Applied

Principles across different State and Territory jurisdictions and that:

“This is resulting in boundary issues and funding disputes, which can lead to

reduced or no access to services for both NDIS Participants and people with

disability not eligible to the NDIS.”17

In its legislated review of NDIS costs, the Productivity Commission which initially proposed

the NDIS in 201118, recommended in Recommendation 10.5 that the:

“Council of Australian Government (COAG) Disability Reform Council should

immediately clarify Australian, State and Territory Governments roles and

responsibilities (sic) with respect to market stewardship (sic) including

provider and workforce data on supply gaps (sic) and coordinated market

stewardship actions with other care sectors and mainstream services.”19

The Joint Standing Committee in its recent report on the Transitional Arrangements for the

NDIS recommended in Recommendation 3 that the:

“COAG Disability Reform Council conduct immediately a national audit of all

Australian, state and territory disability support services transitioning to the

NDIS, to identify and address emerging service gaps.”20

ECIA NSW/ACT agrees with the Productivity Commission and the Joint Standing

Committee’s call on all of government to respond to gaps between NDIS and other

government systems and provide a summary of key issues around interface points between

the NDIS and other government and community services as they related to children age 0-6.

In the last thirty-five years of supporting children with disability and developmental delay in

the community context NSW ECI services have developed robust local referral pathways

with government and other community services.

Our members have identified significant gaps related to protracted delays in access to

services from a number of government service systems discussed below.

ECIA NSW/ACT consulted with its membership regarding their significant concerns about

gaps in services by way of survey and a series of consultative forums held in October and

November 2017 in six locations in NSW. As well regular Early Childhood Intervention

Service Provider Forums in two regions in NSW and the ACT contributed to data collected

about the gaps.

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We also held a consultation about service gaps with NSW ECI service managers at our

Managers’ Forum on 1 March 2018 which was attended by over 80 ECI service

organisations.

The discussion of services gaps will be divided into four themes:

Ineligible children;

At risk groups;

Families; and

Mainstream and community interface.

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PART THREE – AT RISK GROUPS

1. INELIGIBLE CHILDREN

Children not eligible for NDIS individual funding supports is one of the most significant

groups of children which require a coordinated response from NSW government as many of

these children will require supports from a number of NSW government agencies in order to

address concerns with their development. The section on ineligible children is arranged as

such:

1.1 Children age 0-6 ineligible for an individualised funding support plan under the

NDIS;

1.2 Developmentally vulnerable children with behaviours of concern; and

1.3 Projections for ineligible children.

1.1. CHILDREN AGE 0-6 INELIGIBLE FOR AN INDIVIDUALISED FUNDING SUPPORT

PLAN UNDER THE NDIS

Eligibility for early childhood intervention individually funded support plans under the NDIS

for children age 0-6 in sections 25(1) of the NDIS Act 2013 requires that a child meet the

developmental delay requirements set out in section 9 NDIS Act 2013. 21

The definition effectively excludes those children who have mild developmental delays.

Children with mild developmental delays are often characterised by one of the following

descriptors:

A delay in only one domain that does not result in substantial reduction in functional

capacity and the need for response from more than one functional discipline;

A delay in one domain that affects functioning in at least one another domain but

does not require a response from more than one functional discipline;

A third group includes children assessed as mild or mild/moderate delay whose

eligibility for the NDIS is unclear, to be tested on case by case basis; and

Developmentally vulnerable children with complex behaviour.

Under the ECEI Approach, the Early Childhood Partner or the ECEI Transition Provider

would provide interim supports in the short term together with referrals to community and

mainstream services for both NDIS eligible and ineligible children. ECEI Transition Providers

have told us that they have encountered significant barriers when referring to mainstream

and community services for children 0-6 ineligible for the NDIS.

Access to mainstream services varies greatly from region to region, with limited access to

family support services and long community health waiting lists for allied health support in

rural and remote NSW being the most significant barriers.

ECI services across NSW have noted substantial fragmentation of services for children age

0-6 such that a response from one service system may be secured, but no or limited service

response from the other systems. Under the block funded model ECI services acted as a

coordinator of other services involved with the child and family.

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However, this coordination function is out of scope in the individualised funding model under

the NDIS as there is no allowance for collaboration in the funding model.

ECI services, using their historic Stronger Together funding have supported children with

mild delays that had additional vulnerabilities because of family circumstances. It has been

ECI services’ experience that families experiencing vulnerability benefit from regular contact

with ECI services to promote their child’s development, in order to prevent further delay and

build family capacity.

An emerging group includes children who have had an NDIS plan that are not eligible for a

further NDIS plan having achieved their functional goals under the plan and as such exit

early childhood intervention. We note that many of these children have some ongoing needs

which will need to be met through mainstream services and community supports.

1.2 DEVELOPMENTALLY VULNERABLE CHILDREN WITH BEHAVIOURS OF

CONCERN

Some children referred to Early Childhood Intervention services present with challenging

behaviours. This may be as a result of exposure to maltreatment, trauma, parent capacity,

abuse or neglect which manifests in delayed development. We note that 10 per cent of

children under 5 in NSW have social/emotional behaviour problems.22

These behaviours of concern are often indicators of unmet needs that require a multi-agency

response. Such children are often diagnosed with Oppositional Defiant Disorder or Attention

Deficit Disorder/Attention Deficit Hyperactivity Disorder. ECEI Transition Providers have

advised us that in their experience children who are only identified with behaviours of

concern have generally not been granted access to the NDIS as their reduction in functional

capacity cannot be ascribed to more than one of the four identified areas of major life activity

found in s9 of the NDIS Act 2013 requiring a coordinated team around the child response.

NSW Health provides children’s mental health services through the Child and Adolescent

Mental Health Service (CAMHS) program. CAMHS provides a range of specialist mental

health services to infants, children, young people, their families and carers.

Children/adolescents who can access CAMHS include those that are:

At significant risk of suicide/ harm to self or others; and

Experiencing high levels of emotional distress and experience moderate to severe

functional or developmental impairment.23

We were able to find an early childhood intervention mental health program based on a

Victorian model called Getting on Track in Time (Got It!). Got It! is a school-based, early

intervention, therapeutic program that targets children between the ages of five and eight

with problem behaviours. Got It! works closely with schools, families and carers to identify

and support these children who otherwise can go on to develop more significant mental

health concerns later in life.24

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1.3 PROJECTIONS FOR INELIGIBLE CHILDREN

We estimate, based on NDIA projections and data discussed below, that by 2019/20 there

are likely to be 9,037 to 12,065 children with delays in NSW that are not likely to receive an

individualised funding support package under the NDIS but still require some degree of

support from other government systems and the community.

As of February 2018, the NDIA has not published data about eligibility determinations for

children age 0-6 seeking access to the Scheme. This data would provide an indication of the

numbers of children likely to have a developmental delay that are not eligible for an

individualised funding support plan under the NDIS. However, the Agency has recently given

some indication of the numbers of these children which is discussed below.

The NDIA projections indicate by the Financial Year 2019–2020 that 47,000 of the 460,000 total NDIS Participants with approved Plans will be children age 0-6 and that a further 59,000 children age 0–6 may identify as having a developmental delay or disability but are not expected to be eligible for an individualised funded support package.25

The latest NDIS Quarterly Data Report up to 30 September 2017 shows that there are currently 14,061 children age 0-6 Australia wide with an approved individualised funding support plan under the NDIS (NDIS plan).26 As of 30 September 2017 there are 5,015 children age 0-6 that have a NDIS plan in NSW. This accounts for approximately 36 per cent of approved plans nationally for this age group. If we apply the 36 per cent figure to the 59,000 national estimate of children with delays that are not expected to be eligible for an individualised funding support plan, it is reasonable to estimate that 21,043 children age 0-6 will seek access to the NDIS NSW by 2019-20.

It is not clear how many of these children will be eligible and how many not. During the

Nepean Blue Mountains Trial in 2015, the data collected by the Agency indicated that sixty

per cent of children approaching the Scheme were not eligible.

If we take a sixty-forty split, then 12,625 children in NSW are not likely to receive an

individualised funding support package under the NDIS but will still require some degree of

support from other government systems and the community.

The Agency released data for prospective Early Childhood Partners in NSW via the Partners

in the Community Round 3 program which indicates that by FY 2019-20 there are likely to be

9,037 ineligible children in NSW.

However, the true number cannot be known as ECIA NSW/ACT Transition Providers have

advised that many access requests have been made for new entrants to the Scheme and

that some of these children may not be determined to be eligible.

ECIA NSW/ACT recognises and acknowledges the important role of the yet to be

announced Early Childhood Partner in NSW in linking children and their families that are

eligible for an NDIS plan and those that are not eligible for an NDIS plan to other

government services and the community.

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1.4 RECOMMENDATIONS

Recommendation regarding Ineligible Children

NSW Government investigate and trial across different regions, program models that

take into account parent capacity building and support for families and their children

with challenging behaviour at risk of developmental delay such as the Got It! Model,

Triple P, Bringing up great kids and Parents under pressure.

Clarify the roles and responsibilities of Adult Mental Health Services as it relates to:

Identification of concerns relating to parenting capacity of mental health

service consumers; and

Adult Mental Health Services’ role in supporting the parent in their

parenting capacity including referral to appropriate services for the

parent and the child.

2. AT RISK GROUPS

Having consulted extensively with ECI service providers in NSW about gaps in services

between early childhood intervention services under the NDIS and mainstream and

community services we identified the following At Risk groups discussed with specific

recommendations:

2.1 Culturally and Linguistically Diverse children and families;

2.2 Aboriginal and Torres Strait Islander children and families;

2.3 Pre-term infants; and

2.4 Rural and remote children and families.

2.1 CULTURALLY AND LINGUISTICALLY DIVERSE CHILDREN AND FAMILIES

Culturally and Linguistically Diverse (CALD) is an umbrella term for all culturally diverse

communities living in Australia. The issues relating to settlement are most keenly felt by

refugees and newly arrived migrants from non-English speaking backgrounds who are often

affected by chronic stress, which can impact on their parenting capacity.27 Furthermore,

children from refugee and migrant backgrounds exposed to trauma are at risk of

developmental delay due to difficulties in participating in community life because of

behaviours developed to manage trauma that are often perceived as signs of behavioural

problems in the country of settlement.28

Assessments of CALD children are often conducted using tools that assume developmental

milestones that are not shared across cultures, such as encouraging early independence

e.g. drinking from a cup or eating with a spoon.29 Therefore, families of children of diverse

cultures may not identify a certain series of behaviours as being descriptive of a delay or

disability.

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These families can fall in the gaps between service systems as many believe that a delay or

a disability is temporary problem which will resolve itself. Many CALD families tend not to

seek out mainstream and community support, instead relying on alternative culturally

informed practices such as herbal medicines. 30

ECEI Transition Providers found that services needed to be delivered in a culturally

responsive manner. Culturally Responsive Practice is one of the pillars of Early Childhood

Intervention and it comes under Quality Area 1: Family of the ECIA National Guidelines for

Best Practice which emphasise the need for the ECI practitioner to be “knowledgeable and

respectful of diversity and provide services and supports in flexible ways that are responsive

to each family’s cultural, ethnic, racial, language and socioeconomic characteristics”.

Cultural values shape child-rearing practices and culturally responsive practice ensures that

the family engages with the services.

At present 9 per cent of all NDIS participants in NSW are from CALD backgrounds31, where

the CALD population makes up 25.2 per of all NSW residents.32 The figures for CALD

participation in ECI have not been released or are not available.

Recommendation regarding Culturally and Linguistically Diverse Children and

Families

NSW Government investigate and support a community development approach that

addresses the low take-up of services by CALD families from disadvantaged

backgrounds such as the Community Hubs Model that is designed for

migrant/refugee women with pre-school age children.

2.2 ABORIGINAL AND TORRES STRAIT ISLANDER CHILDREN AND FAMILIES

Aboriginal and Torres Strait Islander children age 0-14 years were more than twice as likely

as non-Indigenous children to have a disability as compared to the general population

(15.2% compared with 6.6%).33 Furthermore, Aboriginal and Torres Strait Islander children

are nearly four times more likely to be developmentally vulnerable in the language and

cognitive skills domain.34

The latest dataset from the NDIA advises that Aboriginal and Torres Strait Islander

participation rate in the NDIS is approximately 5 per cent.35 Data relating to Aboriginal and

Torres Strait Islander children 0-6 accessing early childhood intervention is not available.

There are concerns in the sector about access to NDIS support for Aboriginal children as

reflected in National Disability Services’ State of the Disability Sector Report 2017.36 These

issues have also been raised by the Aboriginal Child Family and Community Care

Secretariat about the NDIS and engagement with Aboriginal and Torres Strait Islander

communities.37

There are a number of factors that influence the participation of Aboriginal people in

disability services including cultural understanding of disability, family and kin, trauma and

racism.

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In order to address these barriers it is pivotal for mainstream services to develop

relationships of trust with the local community that are cognisant of and responsive to these

issues.38

Policy response

In framing the government’s Plan to Improve Outcomes for Aboriginal and Torres Strait

Islander People with Disability, the Department of Social Services remarks on the limited

data on Aboriginal and Torres Strait Islander people with disability and calls for

improvements in data collection and increased community driven research with respect to

disability and Aboriginal and Torres Strait Islander people.39

The NDIA in its Aboriginal and Torres Strait Islander Engagement Strategy focuses on the

Agency’s market stewardship role to support and in some cases develop local Aboriginal

and Torres Strait Islander suppliers and their capabilities and utilising them through the

supply chain.40

Recommendations regarding Aboriginal and Torres Strait Islander Children

and Families

An all of government response to supporting developmentally vulnerable Aboriginal

and Torres Strait Islander children age 0-6, given the degree of vulnerability for these

children, including:

• Further data collection and increased community driven research with

respect to disability and Aboriginal and Torres Strait Islander people;

• Mapping of culturally inclusive Aboriginal and Torres Strait Islander

services for children age 0-6 across NSW; and

• Developing local approaches where culturally competent mainstream

services and Aboriginal controlled community organisations work in

partnership to support Aboriginal and Torres Strait Islander children.

2.3 PRE-TERM INFANTS

Pre-term infants are infants born at less than 37 weeks of gestation.41 Preterm Infants'

Parents' Association (PIPA) estimates that 8.6 per cent of births in Australia were premature,

which equates to about 26,000 children.42

Because the child was born prior to full gestation, her/his organs are not as developed as a

full term infant and as a direct consequence, the child may develop health conditions related

to breathing and have difficulty feeding and a lower muscle tone amongst other adverse

outcomes.43

Delays in development are directly related to the degree of prematurity as measured by

gestation time and birth weight. However, the nature of impact on functioning and

development varies from child to child.

A 2017 Royal Women's Hospital/Murdoch Children’s Research Institute study of 402

pre-term babies found that:

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“Babies born moderately-to-late preterm were three times more likely to have delays in their

language development and motor skills and twice as likely to have delays in cognitive

development, such as ability to perform tasks and follow directions. They were also more

likely to have difficulty coping in different social settings.” 44

Premature children may also have other delays in development such as hearing and vision

loss45; in such instances immediate early intervention is required to ensure that visual and

auditory information reaches the brain during the critical period for brain development

between 0 and 3 years.46

We also note the significance of universal health and development screening for all babies

including pre-term infants and other babies with developmental delays and disabilities; that is

accompanied by a combined response from Early Childhood Intervention and maternal and

child primary health care services.

Neonatal Intensive Care Units (NICUs) provide ongoing services and monitoring to children

and families that have premature children. The NICUs are operated by each of the NSW

Local Health Districts which form the NSW Perinatal Services Network.

ECI services have traditionally taken on the role of providing supports and monitoring the

development of premature babies. It is necessary to clarify the responsibility of the NICUs

and other Health services for infants, in order to determine the point at which pre-term

infants are to engage with ECEI Services under the NDIS. We note that it is imperative for

the two service systems to work closely together in order to monitor and support the

development of pre-term children. As mentioned earlier this role of first contact, eligibility and

planning will transfer to the soon to be announced Early Childhood Partner/s for NSW.

Recommendations regarding Pre-Term Infants

NSW Health and NDIA continue to clarify and formalise their respective roles and

responsibilities relating to pre-term children with specific reference to:

• NSW Perinatal Services Network and respective Neonatal Intensive Care

Units and the Early Childhood Partners establish close working

relationships, in order to ensure smooth transition from neonatal services

to early childhood intervention, especially for children with vision or

hearing loss at birth who require immediate support; and

• An integrated service response be developed to track and monitor the

development of children born prematurely.

2.4 RURAL AND REMOTE CHILDREN AND FAMILIES

The Centre for Community Child Health reports that NSW has the greatest number of children living remotely (360,743) in Australia.47 In its recently released paper on health services for people with disability in remote and rural Australia, the Australian Institute of Health and Welfare (AIHW) found that people with disability in Outer Regional and remote Australia are more likely to have unmet health-care needs.

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This is due to limited service availability, inability to arrange for a service and not knowing about a service. In the major cities the examples cited include cost, service availability and not knowing about appropriate services.48

These trends fit with the feedback received by ECIA NSW/ACT from members about early childhood intervention service providers in rural and remote NSW via ECIA NSW/ACT’s regional Forums where ECI services told us that:

Children with developmental delay and disability in rural and remote Australia have

high levels of unmet need due to workforce shortages for paediatric allied health

services resulting in long waiting lists;

Families are often required to travel long distances for each appointment;

There is limited access to paediatricians and child psychologists; and

They regularly encounter complex families with children younger than 6 years of age

that required a coordinated approach; see section on Rural and Remote

Communities and Families experiencing vulnerability.

Royal Far West reports that:

Children living in Very Remote areas are twice as likely as those living in Major Cities

to be developmentally vulnerable;

32% of children in rural or remote NSW are unable to access the health services they

need; and

Children in rural, regional and remote areas are more likely to be developmentally

vulnerable than children in metropolitan areas (27% of all children in outer regional,

remote and very remote areas compared to 21% in towns and cities).49

Many of our members have implemented creative solutions to the issues of distance and service availability in rural and remote communities through telehealth and partnerships with local community services or medical practices that make their premises available regularly. ECI service providers who work in the same community often deliver services jointly with other ECI services that are supporting children in the same community.

Social disadvantage for vulnerable families in rural and remote NSW as a

predictor of child developmental vulnerability

ECI services used to work with these families by supporting the children to access supported

playgroups and building parent capacity by providing advice and jointly developing workable

strategies.

However, some of these families will not be eligible for NDIS and will not be able to access

this critical support. Some may be able to access limited short term interim supports from the

Early Childhood Partner but many will rely on supports from mainstream services and the

community.

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Children in rural and remote Australia:

Experience poverty at disproportionately higher rates;

Are more likely to live in unemployed households, with single parent families, and in

families where the mother has a low educational attainment;

Are more likely to be socially isolated;

Are more likely to be exposed to family and domestic violence and have contact with

child protection services;

Are less likely to engage with early childhood education and care services; and

Have poorer access to early childhood intervention services, paediatricians, allied

health and mental health services.

NDIA’s Rural and Remote Strategy for 2016–201950 acknowledges that the NDIA has a role

to intervene in regions where there are thin markets to ensure culturally appropriate and

relevant supports to maximise achievement of supports for participants. This can be

achieved by working in partnership with local communities and mainstream services that

support people with disability.

NSW Government has put in place a number of initiatives focused on rural and remote NSW

including the Regional Growth Fund51, the Far West Initiative52 and the Innovation Fund

established under the NSW Government’s Fit for the Future reforms53.

Wobbly Hub Rural Research Team54 developed by the University of Sydney provide an in-

depth assessment of rural and remote issues and list several recommendations, including

the use of Allied Health Assistants and telehealth in delivery of therapeutic services to

children with developmental delay and disability living in rural and remote NSW. We note

that Royal Far West have mapped early childhood health services in rural and remote NSW.

Recommendations regarding Rural and Remote Children and Families

A coordinated approach be developed for rural and remote NSW, involving health,

education and community service providers, with the Early Childhood Partners and

Local Area Coordinators, to provide outreach services, including telehealth facilities,

to families with children who have developmental delay and disability.

We endorse the Royal Australasian College of Physicians recommendation in 2018-19

Pre-Budget Submission Paper which highlights the need for expansion in home visit

programs for young children in rural and remote areas.

3. FAMILIES

The NDIS model of early childhood intervention for children with developmental delay and

disability age 0-6 is focused on the functional capacity of the child. The Early Childhood

Intervention Best Practice model focuses on the needs and capacity of the family and the

child as a single unit. ECI services often work with socioeconomically disadvantaged families

who need additional support to address some of the underlying issues in the family before

being able to proceed with early childhood intervention.

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There are also those children with mild developmental delays that are not likely to be eligible

for the NDIS, who remain at a significant risk for further developmental delays due to

complexities in family life and the parent’s capacity to support their development.

3.1 PARENTAL CAPACITY AS KEY INDICATOR OF CHILD DEVELOPMENTAL RISK

New South Wales Child Development Study (NSW CDS) of 69,116 kindergarten children 5 years of age found that exposure to early childhood maltreatment has been associated with poor early childhood social-emotional functioning in 3-8 year-olds and heightened aggression and hyperactivity in 5-8 year-olds due to neuropathology of sustained stress. The authors speculate that the reasons for poor social-emotional functioning were unaddressed delays in development and learning support needs.55 The NSW CDS identified the following factors as having a significantly negative impact on

child development:

Perinatal risk factors - prenatal smoking exposure, maternal pregnancy

complications;

Socioeconomic disadvantage; and

Child maltreatment.56

Other factors identified by follow-up analysis include:

Parent substance abuse;

Parental offending rates due to impact on cognitive and communication development

where mother or both parents are involved with the criminal justice system; and

Parental mental health status - parents with ADHD and Anxiety who more likely to

exhibit controlling behaviours which negatively impact the child’s development.57

The NSW CDS highlights the importance of intervening with ‘at-risk’ families in the child’s

early developmental period through early parent/family training programs especially for

female offenders when they become mothers58 and remarks on the importance of early

identification of maltreated children and active casework by child protection agencies.59

A 2017 study based on the data from the Australian Early Learning Development Study

found similar risk factors as identified by the NSW CDS. The authors highlight the

importance of:

“Cross-agency communication of child maltreatment (sic) for enabling

appropriate school-based, community or health service interventions to

prevent developmental lags and later potential consequences of membership

in such risk classes.” 60

Services for parents with mental health conditions

We note the role of Adult Mental Health Services in identifying issues relating to parenting

capacity of mental health service consumers and their role in supporting the parent in their

parenting capacity including referral to appropriate services for the parent and the child.

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NSW Health funds a number of specialist mental health services such as Children of Parents

with Mental Illness (COPMI)61 which focuses on building the capacity of adult mental health

services to work with child mental health, child development and community services to

support parents with mental health conditions and their child in a family centred practice

model. Similarly, the SAFE START Strategic Policy provides direction for the provision of

coordinated and planned mental health responses to primary health workers involved in the

identification of families at risk of, or with, mental health problems, during the critical

perinatal period.62

The Department of Social Services (DSS) has funded the Children and Parenting Support

Service programs.63 This program focuses on families experiencing vulnerability and their

children and requires the adoption of evidence based models in funded programs.

The Australian Institute of Family Studies has established a list of effective evidence based

capacity building parenting programs, for example, Parents under pressure, Bringing up

great kids and Circles of security.64 The Parenting Research Centre has developed the

program ‘Signposts for Building Better Behaviour’ to support parents with children with

behaviours of concern.65

3.2 FAMILY SUPPORT AND PARENT/PARENTING SUPPORT

A child 0-6 cannot be separated out from their family, so it is necessary to provide

support to the family as a cohesive unit. This is acknowledged in the ECIA National Best

Practice Guidelines which emphasise the significance of family centred practice as:

“A way of thinking and acting that ensures that professionals and families work in

partnership and that family life, and family priorities and choices, drive what happens in

planning and intervention. Family-centred practice builds on family strengths and assists

families to develop their own networks of resources – both informal and formal.” 66

In the previous NSW model, many ECI services employed educators and counsellors to

support families around grief and loss associated with conversations about their child’s

disability or developmental delay. With the introduction of the NDIS, there are insufficient

funds to employ specific counsellors and family support workers to maintain family unity and

to help parents enhance parenting skills and resolve problems.

Many of our members in regional NSW have reported that they have had to terminate the

employment of their counsellors and family support workers due to incompatibility with the

NDIS early childhood intervention service model discussed above.

Families are now referred to local community and government services for family support

services, parenting group and grief and loss counselling.

Families commonly encounter extensive waiting lists across both urban and regional NSW

and note a lack of knowledge about the impact of developmental delay and disability on

families in many generalist family support and counselling services.

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Emerging evidence base

There is an emerging body of evidence around support needs of parents of children with

developmental delay and disability, discussed below.

Clinical studies of parenting behaviour of parents of children with developmental delay have

found that these parents report heightened parenting stress due to early emergence of

disruptive behaviour for children with developmental delay.

This directly affects the parent’s capacity to actively support their child’s development.

Mothers’ parenting stress is also a significantly predictor of ADHD at age 5 in both children

with developmental delay and children that are typically developing. The authors conclude

that:

“Taken together, these studies speak to the importance of parenting stress as an

influence on children’s behaviour and reduction in parenting stress as a target in

early intervention programs.” 67

Family Support Services

There are a number of support and advice lines for parents which are listed on the Raising

Children Network68 including Pregnancy and Newborn Parenting Programs (Antenatal

Classes) through NSW Local Health Districts and playgroups through Playgroups NSW69

and parent support groups run by family support services and listed on Resourcing

Parents70. There are also a range of Triple P parenting groups and seminars for parents of

children age 3-8 delivered by community organisations across NSW.71

MyTime72 is a parent support program for parents of children with disability and

developmental delay funded by the Department of Social Services. Many ECIA NSW/ACT

members run workshops intended for parents who have concerns about their child’s

development, for example Autism Spectrum runs Early Days Workshops73 and Cerebral

Palsy Alliance runs Early Motor Intervention Workshops.74 Many of these workshops are

self-funded by the NGO in order to meet community needs for disability specific parenting

workshops.

The Brighter Futures program delivers targeted, voluntary child protection early intervention

services to families with children who are at high risk of entering or escalating within the

statutory child protection system75 due to the following vulnerabilities which impact adversely

on the parent’s capacity and/or the child’s safety and wellbeing:

Domestic violence;

Drug or alcohol misuse;

Parental mental health concerns;

Lack of parenting skills or inadequate supervision; and

Parent(s) with significant learning difficulties or intellectual disability.76

Child, Youth and Family Support (CYFS) is an early intervention program targeting families

with children age 0-12 as well as young people age 12-17 who fall below the threshold for

statutory child protection intervention delivered by non-government organisations and local

councils across NSW.

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CYFS service offers include: advice and referral; assessment, case planning and case

management; parenting programs and parent support groups; skills focussed groups for

young people; counselling; and home visiting.77

Mainstream parenting programs are highly effective in supporting parents but may not be

targeted to meet the needs of parents of children with a developmental vulnerability.

ECI services recognised the need to work with these services by employing family support

workers and counsellors to provide tailored supports.

With the transition to the NDIS, there are limited parent supports that can be offered by the

Early Childhood Partner within the ECEI Pathway, apart from access to general parent

support services. For those children that have NDIS plans an ECI professional is able to

provide tailored parenting advice.

3.3 FAMILIES EXPERIENCING VULNERABILITY

ECI services provided support to families experiencing vulnerability with children that have

developmental delays and disabilities, acting as a protective factor to the families.

ECI services used their Stronger Together block funding to employ family support workers

within their organisations and to organise internal mentoring and staff training. ECI providers

were able to tap into funding to improve professional networks and communities of practice

to further develop processes and skills for supporting disadvantaged families. 78

Research conducted by the Centre for Community Child Health tells us that: “NSW has the

second largest proportion of childhood poverty (after Tasmania), exceeding the national

average"79 and that children from disadvantaged backgrounds are more than twice as likely

to be developmentally vulnerable at the start of school.

During ECIA NSW/ACT consultations ECI services in rural and remote communities

identified socially isolated families that accessed minimal services in the community. These

families often experienced other vulnerabilities including domestic violence, homelessness,

poverty, social isolation, drug and alcohol issues and interaction with child protection and

criminal justice systems. As a result the parent’s capacity to support child development may

be significantly reduced leading to concerns about the child’s development.

Contextual interviews and surveys of ECIA NSW/ACT members, tell us that some of the

children with mild delays live in complex family situations, where the complexity of the family

often overshadows the developmental needs of the child due to the parents’ diminished

capacity as a result of:

• Intellectual disability;

• Mental health concerns; and

• Substance abuse.

We are concerned that if children from families with multiple complexities are not supported

early in life to reach developmental milestones, that the child’s developmental outcomes are

likely to remain significantly reduced compared to peers later in life due to the family’s

inability to support the child’s developmental outcomes.

Families experiencing vulnerability are less likely to access services and in addition are

difficult to engage.

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ECI services report that families are more likely to engage when there is consistency,

perseverance and development of strong relationships. The current ECEI Approach does not

support the sustained practice required to support the engagement of families who are at

risk of disengagement.

Economics of providing early childhood services for vulnerable children and

families

The economics of social development strongly links positive early childhood skills with

significant Gross Domestic Product (GDP) growth. This is most evident in the case of

vulnerable children where according to a 2014 PricewaterhouseCooper’s study which

explains that the benefits to investing in early childhood are threefold, as investing in early

childhood:

Amounts to an estimated increase in GDP of $10.3bn by 2050;

Increases the participation of vulnerable children which causes a commensurate

growth in GDP estimated at $13.3bn by 2050; and

Increases the female workforce participation which results in GDP growth of $6.0bn

by 2050.80

Conversely, a Canadian study warned of the cost of not investing in early childhood as it

depletes the future stock of human capital, equivalent to 20 per cent of GDP growth over the

next 60 years.81

Working with disadvantaged families

Many providers in this research found it challenging to continue their family-centred practice,

let alone enhance it, particularly with disadvantaged families. They felt that the NDIS,

with its focus on the child, did not cover time and support for family crises or ongoing

complex family needs. ECI services continue to support families when issues and concerns

come up during an appointment; spending additional time with the family which cannot be

claimed for from the child’s NDIS package.

Services report mixed results working with Family Support service providers and Brighter

Futures providers across NSW, who are often called upon to link complex families back in

with services including early childhood intervention. See recommendations for Family

Support services (page 23).

Collaborative service models designed to support families experiencing

vulnerability with children with developmental delay and disability

FACS ADHC have funded two programs discussed below, designed to support families

experiencing vulnerability with children with developmental delay and disability. These

programs are:

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1. Intensive Family Support Program (IFSP) is a family preservation service which

proposes that the most effective approaches to supporting families of a child with a

disability include providing flexible, home-based interventions which involve all family

members and build formal and informal resources and capacity to manage stress.82

IFSP is phasing into the NDIS. It is unclear whether the IFSP model can be ported to

the NDIS early childhood intervention service model.

2. The Early Childhood Intervention Coordination Program (ECICP) was a joint initiative

of three NSW Government agencies in conjunction with two Commonwealth

agencies and ECIA NSW/ACT and non-government agencies. ECICP focused on

coordination and planning and service delivery of early childhood intervention

services for families who have a child with a disability or developmental delay by way

of state‐wide information and planning days to discuss early childhood intervention

coordination.83

We believe that there are opportunities for NSW government via strategic commissioning

initiatives and for the NDIA via Innovation, Linkages and Capacity Building funding stream to

build on the success of IFSP and ECICP models, in order to drive innovation in the provision

of integrated services. For instance, through proven programs such as the Community Hubs

model designed for migrant/refugee women with pre-school age children. The program offers

services such as skills training, English classes, sewing and breakfast clubs as well as

volunteering opportunities and community events. It is delivered in a community setting in a

partnership approach between the philanthropic sector, federal, state and local

governments, schools and service providers.84

We recommend adapting the Integrated Service Response (ISR) model which was designed

for adult NDIS participants to the needs of children with developmental delay and disability

age 0-6. ISR which is hosted by NSW Health is a cross-government initiative targeting

vulnerable people with significant and intensive support needs who need coordination of

multiple mainstream services (such as health, mental health, housing and justice in

combination) and NDIS funded supports, because their wellbeing and stability in the

community is threatened by crisis, complexity or the changing nature of their support needs,

or community safety concerns.

3.31 RECOMMENDATIONS

Recommendations regarding Families Experiencing Vulnerability

Establishment of regional case conferencing initiatives for complex families with a

child age 0-6 with an NDIS plan, which require supports from multiple NSW

Government services. The regional case conferencing initiative is to be based on

sound family centred practice and would feature:

• Guidance on establishing roles and responsibilities of different agencies in

that specific set of circumstances;

• Process, policies and documentation that support development of a plan for

working together which identifies responsibilities, timelines and outcomes;

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• Participants to consider how to pay for collaborative work (under the NDIS,

ECI providers need permission from the child’s parent to bill for collaborative

time from the child’s NDIS plan); and

• Develop How To Guides, case studies and Frequently Asked Questions.

Expanding Family Support services, such as MyTime and Brighter Futures, to meet

the needs of families experiencing vulnerability through an outreach based and

collaborative approach.

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PART FOUR – MAINSTREAM INTERFACE

4. MAINSTREAM AND COMMUNITY INTERFACE

The mainstream and community interface is one of the pillars of the NDIS ECEI Approach

where the Early Childhood Partner links families with local mainstream services and with

services in the community.

ECIA NSW/ACT would like to stress that all children need access to mainstream supports

and the community regardless of whether the child is eligible for an NDIS individually funded

support plan.

ECI services under the NDIS intersect with the following NSW Government programs:

Community Services;

ECI services and children’s non-government organisations;

Health;

Education;

o Children developmentally vulnerable when starting school;

o Early childhood education and care;

Child protection.

Recommendation regarding Mainstream and Community interface

Mapping study of community services designed for children age 0-6 across NSW, see

Recommendation 1.

General training and up-skilling of all community services with regards to


4.1 COMMUNITY SERVICES

The NSW Department of Family and Community Services funds a range of universal

community services which support families and children such as:

The Community Builders program85 which funds services like neighbourhood centres

and programs targeting specific and broad population groups delivered by a range of

services to strengthen communities and build their capacity such as by providing

mentoring schemes and management training.

The Targeted Early Intervention (TEI) program supports vulnerable children, young

people, families and communities to access support services when required to

prevent issues from escalating and empower them to lead independent and

meaningful lives.86

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The Early Childhood Education Directorate of the NSW Department of Education has

recently announced the NSW Start Strong Pathways87 which promotes preschool

enrolments for families experiencing vulnerability with children 0-3 through a range of

educational programs supporting pathways to preschool, targeting the following groups:

Children with disability;

Aboriginal children;

Children from low income families;

Children from a culturally and linguistically diverse background;

Children who are at risk of significant harm (from a child protection perspective); and

Socially isolated families.

Early Linkers, part of Ability Links NSW, work with families with children age 0-8 years, who

are concerned about their child’s development. There is no requirement for diagnosis or

formal assessment of developmental delay or disability in order to access these services.

Early Linkers provide individually tailored services including information and support,

exploring opportunities and establishing connections with mainstream services and the

community.88 Early Linkers are only funded until 30 June 2018.


Recommendation regarding Community Services

We recommend a mapping study of community services designed for children age 0-6

across NSW.

4.2 ECI SERVICES AND CHILDREN’S NON-GOVERNMENT ORGANISATIONS

ECI services have deep connections and knowledge of their local community that has been

built over 35 years of early childhood intervention programs in NSW.

By the nature of early childhood intervention, ECI services work in the child’s natural setting

with all people who support children with developmental delay and disability age 0-6. In this

capacity ECI services connect different systems by way of delivering quality early childhood

intervention service in line with the ECIA National Best Practice Guidelines on Early

Childhood Intervention.

NSW ECI sector is currently undergoing an alignment and transition process with the ECI

model under the NDIS which means that ECI services are to become providers of services

under the NDIS. This is different from the role ECI services had under the NSW Stronger

Together block funded system where ECI services provided a range of wrap around services

for families and children with developmental delay and disability. Many ECI services

continue to provide these wrap-around services using retained funds on pro bono basis.

It not clear as to the sector’s financial capacity to continue to do so on ongoing basis.

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As these supports will need to be met by mainstream and community services, there is a

much greater emphasis on collaboration and joined up service delivery as:

i. ECI services need assistance from other systems to address underlying issues before

the family is able to embark on early childhood intervention; and

ii. Developing integrated community and mainstream supports for families and children

with developmental delay and disability that are not likely to get an individually funded

support plan.

In order to respond to the issues raised above ECI services are focused on innovative

models and maintaining partnerships and pathways. There is also a significant opportunity to

work with other children’s non-government organisations (NGOs) that deliver family support

and children’s services across the identified sectors in NSW.

As ECI NGOs are based in the community, they can actively work with communities,

families, children and other community services to build community capacity and foster

innovative place based solutions by tapping into local community grants and community

services networks.

For example, on the Mid-North Coast ECI services have partnered with the local community

to produce a media campaign focusing on disability awareness and inclusion called Accept

Difference89.


Recommendation regarding ECI services, the ECEC sector and children’s

non-government organisations

The establishment of a Strategic Reference Group for all children’s NGOs, including

family support services, universal community services, early childhood intervention

service providers and Early Childhood Education service providers.

Endorsement of ongoing consultation and partnerships with the NGO sector for




4.3 HEALTH

NSW Health provides three types of children’s development services:

a) Community Health providing paediatric allied health – outpatient and community

based, parenting groups, supported playgroups and individual therapy.

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b) Child and Family Health Nursing Services provide Universal Health Home Visiting

nursing services for families with young children focused on identifying and

responding to health needs and well-being of children and families.90

c) Developmental Assessment Services through Local Health Districts and Children’s

Hospitals provide developmental and diagnostic assessment and medical review.91

Health and Families NSW have developed the Supporting Families Early package which

contains policies and guidelines for identification of families experiencing vulnerability

through a comprehensive primary care assessment model, SAFE START, and the provision

of maternal and child primary health care services.92

There are numerous initiatives on early childhood development at the Local Health District

level such as the Early Childhood Development: Everyone’s Business developmental

surveillance model based in the Botany area delivered in partnership with four local

non-government agencies targeting socioeconomically disadvantaged communities.93

ECI services in metropolitan and regional NSW advise of significant wait lists for children’s

development services. In particular, one-to-one paediatric allied health services for those

children with moderate delays in development, often have wait lists of 12 months or more.

ECI service providers also advise of wait lists that are 12 months long for developmental

assessments with a paediatrician or a developmental psychologist in many Local Health

Districts in NSW.

See section on Rural and Remote Communities for discussion around availability of

children’s development services in rural and remote communities (page 20).

There are significant issues regarding the interface between NDIS and the Health system

which are beyond the scope of this Paper. For further edification and clarification please see

the RACAP’s Position Paper on the NDIS,94 and the Joint Standing Committee’s report on

the Transitional Arrangements for the NDIS.95

ECIA NSW/ACT recognises that many delays in development are not identified early enough

for the children to benefit optimally from early childhood intervention. For example, in the

United States, without routine screening, only an estimated 30% of children with

developmental concerns are identified before they reach kindergarten.96


Recommendations regarding Health

ECI services to work closely with the Universal Health Home Visiting Service to

improve routine screening of all very young children.

A mapping study of services delivered by NSW Health for children age 0-6 provided

across 15 Local Health Districts in NSW, see Recommendation 1.

We endorse the Royal Australasian College of Physicians recommendation in their

2018-19 Pre-Budget Submission Paper which emphasises the need for:

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“new investment in paediatric child health services that are universally available, but

with a scale and intensity that is proportionate to the level of disadvantage so that

health policies, programs and initiatives funded by the Commonwealth Government

can begin to address inequities in child health.” (A Healthy Future for all Australians:

RACP Pre-Budget Submission 2018-19, Royal Australasian College of Physicians,

page 9).

4.4 EDUCATION

CHILDREN DEVELOPMENTALLY VULNERABLE WHEN STARTING SCHOOL

In 2015, 20.2% of Australian children in their first year of school in NSW were vulnerable in

one or more key areas of development and 9.6 per cent of children in NSW were

developmentally vulnerable on 2 or more domains.97 The reasons why children are starting

school with developmental delays is not clear and may relate to:

Late identification;

Lack of parent’s capacity to support child development; and

Other socioeconomic and family pressures.

It is unclear how many of the children in this group are likely to meet the access requirement

for the NDIS. We note that the access requirements for children 7 years of age need to meet

the disability requirement as set out in section 24 of the NDIS Act 2013, which is different to

the developmental delay standard set out in s25(1) and s9 of the NDIS Act 2013. This

means that the child older than 7 will need to provide proof of diagnosis that meets the

disability requirement set out in List A of the NDIA’s Operational Guidelines.98

For those children 7 years of age and older that do not meet the disability requirement,

community health and community services are best placed to respond to the needs of these

children discussed in the Health section. School principals may also decide to employ

paediatric allied health professionals to support the learning needs of a cohort of children in

that school.

External Provider Engagement Agreement

Nationally 7-14 year olds account for 29,835 participants or 27 per cent of all NDIS

participants nationally.99 In NSW 7-14 year olds account for 13,783 participants or 24 per

cent of all NDIS participants in NSW.100

As a result many schools are seeing increasing numbers of NDIS service providers seeking

to support a child with developmental delay and disability in the classroom setting.

The NSW Department of Education has released Guidelines for school principals when

making decisions regarding school access for externally funded health, disability and

wellbeing service providers seeking to provide their services to students at the school during

school hours.101 ECI services welcome this initiative and note that there are often significant

differences in how these rules are applied from school to school.

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EARLY CHILDHOOD EDUCATION AND CARE

The Early Childhood Education Directorate of the NSW Department of Education monitors,

supports and regulates early childhood education services in NSW. The Directorate works to

ensure the delivery of universal early education for children from birth up to and including

school age.102

According to the Applied Principles, the early childhood education and care sector is

responsible for meeting the education and care needs of children with a development delay

or disability through reasonable adjustment, inclusion supports, and building the capacity of

early childhood education and care services to provide inclusive education and care to all

children. 103

The issues for access to early childhood education and care services include:

Increasing population with strong growth in metropolitan areas;

From 2012 to 2016 there has been a 230 per cent increase in the number of children

enrolled for 600 hours of preschool;

That Aboriginal children are less likely to be enrolled for 600 hours of preschool; and

Children from CALD backgrounds are under-represented.104

In order to respond to these indicators the Directorate has introduced Start Strong Pathways

which introduced a new funding model focused on making early education more affordable

and accessible for all children including Aboriginal children and children from disadvantaged

backgrounds.105

Disability Indicators and alignment with the NDIS

The Centre for Education Statistics and Evaluation found that in 2013, 9 per cent of all

children attending community preschools in NSW were living with a disability or additional

needs, and about 85 per cent of community preschool educators work with a child with

disability.106

As a response to the disability indicators for ECEC services in NSW and to align with the

NDIS, the Directorate has introduced the Disability and Inclusion Program which:

Increases the capacity of the early childhood education sector to include children with

disability and developmental delay on the same basis as all children; and

Provide priority of access to a quality preschool program for children with disability

and developmental delay in community preschools.107

Commonwealth funded Early Childhood and Child Care services

There are a number of Early Childhood and Child Care (ECCC) services that attract the Commonwealth’s Child Care Benefit including long day care, family day care, outside school hours care, vacation care, in home care and occasional care.108 Mobile services and Budget Based Funded (BBF) Program services also attract this benefit.109 As part of the new child care package announced in the 2016–17 Federal Budget the Australian Government has established a Child Care Safety Net which includes the Inclusion Support Programme (ISP).

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The ISP assists Early Childhood and Child Care (ECCC) services to build their capacity and capability to include children with additional needs in mainstream services110 by providing tailored inclusion advice and support from state-wide Inclusion Agencies. The ISP also provides funding to mitigate barriers to inclusion as well as specialist equipment. The ISP refers to additional needs which are defined as:

Children with disability including those undergoing assessment for disability;

Aboriginal and Torres Strait Islander children;

Children from culturally and linguistically diverse backgrounds;

Children from a refugee or humanitarian background;

Children with serious medical condition/s;

Children presenting with language and speech delays; and

Children presenting with disruptive behaviour.111


Recommendations regarding Education

General training and up-skilling of all Early Childhood Education and Care services

with regards to developmental delay and disability as it occurs in children age 0-6.

Schools establish regional referral pathways with Community Health, Early Childhood

Partner and Local Area Coordinators.

4.5 CHILD PROTECTION

There has been no research about the prevalence of abuse for children age 0-6 with

developmental delay and disability. However, the data for older children with disability

indicates that children with disability are approximately four times more likely to experience

violence than typically developing children including:

Three times greater risk of physical violence;

Three times higher risk of sexual violence; and

Over four times higher risk for emotional abuse and neglect.112

Broadly speaking there is insufficient data about the number of children with disability and

developmental delay in statutory out-of-home-care due to a lack of consensus in terms of a

definition and assessment of disability and delay. However, it is generally accepted that

children with disability are overrepresented within child protection.113

What is well known is that children admitted into child protection are increasingly younger,

such that the median age of admission into out-of-home-care is 2015-16 was 6 years of age

and the median age of discharge was 9 years of age.114 We also know that children with

disability experience significantly higher placement instability than the remainder of the out-

of-home-care (OOHC) population.115

We know that trauma significantly impacts a child’s development (see section on

developmentally vulnerable children exhibiting complex behaviour, page 13).

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This is the reason why NSW Health provides OOHC Health Pathway program for children

entering out-of-home-care (OOHC). Children entering care are at significant risk for

developmental challenges due to loss of primary carer and as such need to be prioritised for

access to early childhood intervention given that the majority are entering at the age of 6

when early childhood intervention under the NDIS stops at the age of 7.

Voluntary OOHC and risk of child relinquishment

There are some 1000 children in voluntary out-of-home-care in NSW. Voluntary OOHC

providers are transitioning to the NDIS. Those children who have transitioned across have

not been allocated funding in their NDIS plan for their out-of-home care placement as the

NDIS does not fund daily costs of living116. State and Commonwealth are working together

on a solution to this issue. We note that NDIA’s NSW North Office has developed a refined

planning process for child participants in Voluntary OOHC due to complexity.

In 2012, the Victorian Equal Opportunity and Human Rights Commission in its report on

The relinquishment of children with disability into state care in Victoria found that 20 per cent

of children in residential care have a disability.117 Figures for NSW are not available.

Children who were relinquished tended to have:

High behaviour support needs;

Multiple disabilities; and

Complex medical conditions.

Families who relinquished children were experiencing:

Hypervigilance leading to stress and isolation, especially for sole parents;

Exhaustion leading to ill health, depression or anxiety and family breakdown; and

Many felt unheard and had fractured relationships with government departments and

service providers.

NSW Government response

The NSW Government, through Family and Community Services NSW, have initiated a

number of reforms to the child protection system targeting complex families.

Through Their Futures Matter policy framework, the NSW Government has introduced a

$90 million package of reforms over four years having commenced on 1 August 2017 to July

2020.

This will provide 900 places per year for intensive family preservation and restoration

services aimed at keeping families together. Half of the 900 places will be for Aboriginal

children and their families.118

The new home and community-based support services will be delivered based on two

different but related family preservation and restoration models discussed below by

non-government organisations employing healthcare professionals in priority locations

across NSW from 1 August 2017.119

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Neglect and Functional Family Therapy - Child Welfare is a home and community-based

treatment model that works with families where there has been substantiated physical abuse

and/or neglect of a child age 0-17 years. The model is adaptable to the needs of families

with less complex issues that are accessing other services as well as more complex families

that are less likely to engage with other services. It uses family therapy modalities and

delivers a comprehensive service to all family members and is focused on developing the

family’s social and community networks.120

Multisystemic Therapy for Child Abuse is a 24/7 home-based intensive treatment model that

works with families where there has been physical abuse and/or neglect of a child age 6-17

years. The model was designed to support families whose children are at high risk of

physical abuse and/or neglect. The program runs for up to 9 months and offers a range of

specific clinical treatments that promote behaviour change in the family’s natural

environment using strengths to facilitate change.121

FACS also delivers the Early Intervention and Placement Prevention (EIPP) program which

provides appropriately targeted child, youth and family support services to reduce the

likelihood of children and young people entering or remaining in the child protection and out-

of-home care systems.122


Recommendations regarding Interface with Child Protection

Establishing a reference group to discuss the interface between the Child Protection

systems as it relates to children age 0-6, with specific reference to:

Identifying families at risk of relinquishing a child with disability age 0-6;

Map appropriate pathways for family preservation and family support services

for families at risk of relinquishment of a child age 0-6; and

Improved data collection on children in care with developmental delay and

disability age 0-6.

General training and up-skilling of child protection staff with regards to


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http://www.community.nsw.gov.au/for-agencies-that-work-with-us/early-intervention-services/early-intervention-and-placement-prevention