JOINT STANDING
COMMITTEE ON THE
NDIS
COMMUNITY SERVICES DIRECTORATE
AUGUST 2017
Directorate, Office for Disability.
CONTENT
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REPONSES TO TERMS OF REFERENCE
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A) THE ELIGIBILITY CRITERIA FOR DETERMINING ACCESS TO THE ECEI PATHWAY
B) THE SERVICE NEEDS OF NDIS PARTICIPANTS RECEIVING SUPPORT UNDER THE ECEI
PATHWAY ..................................................................................................................... 7
C) THE TIMEFRAME IN RECEIVING SERVICES UNDER THE ECEI PATHWAY ………………… 7
D) THE ADEQUACY OF FUNDING FOR SERVICES UNDER THE ECEI PATHWAY …………….. 9
E) THE COSTS ASSOCIATED WITH ECEI SERVICES, INCLUDING COSTS IN RELATION TO
INITIAL DIAGNOSIS AND TESTING FOR POTENTIAL ECEI PARTICIPANTS ................... 10
F) THE EVIDENCE OF THE EFFECTIVENESS OF THE ECEI APPROACH ……………………….. 11
G) THE ROBUSTNESS OF THE DATA REQUIRED TO IDENTIFY AND DELIVER SERVICES TO
PARTICIPANTS UNDER THE ECEI ................................................................................ 12
H) THE ADEQUACY OF INFORMATION FOR POTENTIAL ECEI PARTICIPANTS AND OTHER
STAKEHOLDERS .......................................................................................................... 12
I) THE ACCESSIBILITY OF THE ECEI APPROACH, INCLUDING IN RURAL AND REMOTE
AREAS ......................................................................................................................... 13
J) THE PRINCIPLE OF CHOICE OF ECEI PROVIDERS ……………………………………………….. 14
K) THE APPLICATION OF CURRENT RESEARCH AND INNOVATION IN THE
IDENTIFICATION OF CONDITIONS COVERED BY THE ECEI APPROACH, AND IN THE
DELIVERY OF ECEI SERVICES ...................................................................................... 15
L) ANY OTHER RELATED MATTERS …………………………………………………………………….. 15
INTRODUCTION
The ACT commenced preparation for implementation of the NDIS in October 2012. In the last three years the ACT landscape for the provision of Early Childhood Early Intervention services has changed significantly. In April 2014 the ACT Chief Minister announced the phased withdrawal of ACT Government from provision of disability services including therapy and early intervention (EI) services. During 2015, therapy and EI services transitioned to the non-government sector. At the same time the ACT Government established the ACT Child Development Service (CDS) as a mainstream service to ensure continuity of support for children who may not be eligible to participate in the NDIS. The ACT Government retains a focus on supporting NDIS participants through all stages of the transition.
CDS became operational in January 2016, utilising co-located medical and allied health staff to provide a seamless service for young children and their families. These services include assessment and referral for children aged 0-6 years, as well as autism assessment for children up to 12 years of age. CDS promotes appropriate referral pathways, and prior to the commencement of the ECEI Partner in the ACT, has played an important role in referring to the NDIS and other mainstream services. CDS has continued to maintain a focus on assessment and referral, including providing information and advice to families of children aged 0-6 at risk of developmental delay.
The National Disability Insurance Agency (NDIA) launched its Early Childhood Early Intervention (ECEI) approach in February 2016, with the contracted ECEI partner for the ACT, Victorian NGO EACH, announced in March 2017. In early May 2017 the ECEI partner EACH commenced the stand up of its service in the ACT, co-located with the CDS in Holder. EACH recently commenced working with families.
The ECEI partner is the first point of contact for a family with a child who has a Directorate, Office for Disability. 3
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developmental delay. The ECEI partner will work with the family to determine if the child’s
developmental delays meet thresholds for eligibility to the Scheme. A recommendation to
the NDIA for eligibility to the Scheme will be made by the ECEI partner where there is
sufficient evidence that the child’s delay is having a significant functional impact in a number
of areas and the young person would benefit from funded supports. The ECEI partner will
refer and link families to mainstream services and may also provide short term intervention
and support for children who don’t meet the NDIA EI eligibility criteria but who would still
benefit from short term supports outside of access to the Scheme. The ECEI partner will also
provide interim supports for children who are waiting for access to the Scheme.
The ACT retains its commitment to the important role early assessment has in effective early
intervention strategies. The Community Services Directorate will continue to monitor any
potential overlap of services between CDS and the ECEI provider as it matures its operations,
acknowledging the agreed role of the Commonwealth in this area of provision.
The co-location of the ECEI partner with the CDS creates a rich opportunity to enhance the
support to children and their families, though this is yet to be fully utilised mainly due to
early operational and logistical matters currently being addressed. Streamlined pathways
recently commenced with the provision of ‘warm referrals’ for vulnerable families. CDS
continues to provide support to families during transition, and advice in relation to EI
referral pathways.
The ACT has raised concerns with the NDIA over several months regarding the high number
of children in the NDIS, as well as poorly communicated changes to ECEI eligibility through
the NDIA’s operational guidelines on access and early intervention requirements. Even with
the regular raising of matters with the NDIA, the systemic challenges the ACT Government,
participants and providers experience remain current and of significant concern.
The ACT Government welcomes the opportunity to input into the Committee’s inquiry with
the view to strengthen the early childhood early intervention services for young children and
their families.
RESPONSES TO TERMS OF REFERENCE
A) THE ELIGIBILITY CRITERIA FOR DETERMINING ACCESS TO THE ECEI PATHWAY
EI services funded and provided by the ACT were based on a clear delineation of responsibility as set out in the NDIA’s Operational Guidelines. The Guidelines state that children with delays in one or more developmental areas are eligible for an EI package. Children with delays of more than twelve months in one area of development (for example, significantly delayed communication) are eligible for a package of targeted therapy.
Many children previously provided with services through Therapy ACT received packages for one area of significant delay when the NDIS commenced. However, in late 2016 the NDIA changed the operational guidelines relating to eligibility to the Scheme for developmental delay: specifically, the ’need for a combination and sequence of special interdisciplinary or generic care, treatment or other services that are of extended duration and are individually planned and coordinated’. This change is being interpreted to mean children with only one area of delayed development are not eligible. As a result, the NDIA access team deems children with one area of delay not eligible for the Scheme because they do not require interdisciplinary care and these children are no longer receiving (or renewing) packages or early intervention supports. In the absence of an ECEI partner until May this year, this has pushed the cost back on the ACT funded services to provide further evidence of need or to provide therapy supports.
CDS has found that providing evidence of functional impact in two areas of delay is more likely to support eligibility to the Scheme. Examples of children not deemed eligible for the NDIS since the new guidelines were implemented and prior to the commencement of the ECEI approach are detailed below.
Case Study One: Three year old girl with family history of Autism
A three year old girl has a strong family history of Autism Spectrum Disorder and learning difficulties. The child has severely delayed expressive and receptive language, but due to
Case Studies
Case Study One: A young girl with language delay
being so young formal assessments do not capture this very well. For example, the Clinical
Evaluation of Language Fundamentals Preschool showed only a moderate delay when her
scores were scaled, even though she could not complete any of the tests. As she did not
have concerns in other areas of development, she was not deemed eligible for the Scheme
or for early intervention supports.
Case Study Two: Two and a half year old boys with delayed language skills
Two boys aged two to two and a half years are attending a CDS language group. After five
sessions of language stimulation they have made no progress. They continue to have zero
words and poor play skills. These children require Augmentative & Alternative
Communications (AAC)/visual supports before learning language. To implement this they
require longer term intervention. However as they have only one area of concern they are
not currently eligible for the NDIS.
Overall, responses to eligibility for EI and developmental delay from the national access
team have been variable, with some clients referred by CDS being told that they are not
eligible for the NDIS and either sent back to CDS or referred to the NDIA portal to find the
new ECEI partner, which at that stage was not established in the ACT. Families are reliant on
the skills and knowledge of assessors to assist them in understanding the assessments, and
the functional impact of developmental delays and disability on their children. Families also
report they find completing the necessary initial documentation difficult.
In the early years of life, development is rapid and delayed access to appropriate
interventions has a far greater impact on the child’s long term trajectory than may be the
case in later years. Access to appropriate assessments and interventions needs to be
smooth.
Children coming to the end of their package at age 7 are often in difficulty because they are
not NDIS-eligible but have ongoing functional difficulties and need continuing support. These
children potentially ‘fall through the gaps’ as most cannot afford private providers.
There is an acknowledged gap in the area of paediatric rehabilitation for children whose
condition is still stabilising. NDIS will only fund services when there is ‘permanent and ongoing disability’ that is stable. This restriction in eligibility means for children who may, for example, be post accident or post surgery and who will not have an ongoing disability cannot access services through NDIS. This gap is currently being met in the ACT on an individually brokered response, funded by ACT Health.
B) THE SERVICE NEEDS OF NDIS PARTICIPANTS RECEIVING SUPPORT UNDER THE ECEI PATHWAY
It is difficult to comment on scope of service needs being given with the limited clarity on what NDIA have asked the ECEI partner to provide. It is unclear what evidence base is utilised by the NDIA in determining, for example, how many sessions a child diagnosed with ASD level 1 receives, or the extra family supports put in place. There is potential risk for families not receiving the level of specialised support needed early after diagnosis when it is not only needed, but can have the most impact. The NDIA has not given assurances to the ACT on the level and targeted specialised support that will be provided to families with a child diagnosed with ASD level 1.
Also unclear are what measures the NDIA will use to determine effectiveness of the sessions delivered, not only for the child but in capacity building for families and the interface with Information, Linkages and Capacity building (ILC) in the ACT.
A strong evidence base exists for the benefits of early identification and intervention for children with disability and developmental delay. We know that the earlier a child is identified as having a developmental delay or disability, the increased likelihood they will benefit from targeted strategies to meet their needs. It is important to recognise that not only does successful early intervention assist families through the provision of support for their child, it decreases the longer term costs to schools and communities as children move through to their schooling years.
Following ACT Government withdrawal from school readiness early intervention services at
the end of 2014, anecdotal feedback suggests there are young children requiring early
intervention that are not getting the right supports or not connecting with providers.
Providers have indicated the challenges and barriers faced in accessing inclusion support unding which impacts on their ability to provide the required number of staffing support to
care for families enrolling children with additional needs. To assure safety and quality of care for enrolled children, this can result in services turning families away or delaying access to a program. In some instances where children who require one-on-one support for the entirety of a School Age Care (SAC) session, services have covered the cost of the additional educator required, demonstrating that the NDIS funding may have little impact on funding for children to attend SAC programs.
The development of the service sector is in some cases not keeping up with demand. This inability to meet some demands results in delays in accessing services for an age group where timing of intervention is critical in order to prevent lifelong disadvantage.
Additionally, parents report finding it difficult to navigate access to the ECEI pathway; they are given a package but need guidance on how to use the package and the services which would be best for their children.
The providers who take a “key worker” approach may, in some cases, not be serving the family appropriately. The Community Paediatric and Child Health Service has experience of children with severe language delay having an Occupational Therapist visit under the “key worker” model to provide speech development exercises to the parent – not direct speech therapy to the child.
The ACT Government welcomes the opportunity to work with the NDIA and the ECEI partner to ensure that children aged 0-6 years requiring early intervention are effectively identified and supported, and have maximised their opportunity for development prior to starting school. This includes ensuring effective connections are established between the ECEI partners and mainstream service providers such as schools, but in particular ensuring
stronger and more effective connections are established with early childhood education and
care providers.
At a broader level, there is also a lack of clarity to reconcile instances where children may be
diagnosed, or a diagnosis may be attempted to obtain funding for an Inclusion Support
Package under Family Assistance Law, which is administered by the Commonwealth
Department of Education and Training, but may not align with the status under an NDIS
process. It may also be in the best interests of children with disabilities, or under diagnosis
for disability, to align any Inclusion Support for a child with needs identified under the NDIS
process.
C) THE TIMEFRAME IN RECEIVING SERVICES UNDER THE ECEI PATHWAY
A delay in the NDIA ECEI service partner tender process and set up of the service has
resulted in families not receiving services as soon as the ACT expected. This delay has also
increased exposure of the ACT Government in continuing support and service provision until
such time as the NDIA had the partner in place. The NDIA’s communication to families and
stakeholders was also delayed, resulting in some confusion regarding early intervention
supports for children with developmental delays in the ACT.
Timeframes for access have also been impacted by the need to triage clients, and as the
partner has only recently commenced ECEI services, it is unclear what the EI partner’s
capacity is to be responsive to the needs of children and families at risk is. This may be
crucial, for example, when a child with aspiration risks requires the family to receive timely nsupport to meet the feeding and positioning needs of the child, rather than being assigned
to a wait list.
Parents report delays in accessing services, both in accessing the Planning Meeting and there
are then further delays until services actually commence. It is not uncommon for delays of
greater than 6 months to be experienced to the point of commencing therapy. Again, this is
a significant delay at what is normally a time of rapid development and these delays can
have negative lifelong impact.
Directorate, Office for Disability. 9
D) THE ADEQUACY OF FUNDING FOR SERVICES UNDER THE ECEI PATHWAY
The NDIA has not included the ACT in discussions on resourcing associated with the ECEI partner. There is no transparency in the scope and funding of service provision the NDIA is expecting from the partner.
The ACT has experienced cost pressure associated with the shift of what’s ‘in scope’ as outlined in the response to part (a) above. Of particular interest to the ACT is the ECEI partner’s delivery of early intervention services (therapeutic interventions) for children. In the context of the ECEI partner’s broad service delivery remit, the delivery of these direct early intervention services fills a critical service gap for the ACT.
Feedback from families indicates that they are experiencing difficulty in accessing psychology services. This is because, in participant plans, these services are either not provided for at all, or are not funded sufficiently. Psychology services previously funded through mainstream health services before the NDIS are no longer available. Some families therefore have to self-fund psychological supports which results in out of pocket expenses for vulnerable families.
E) THE COSTS ASSOCIATED WITH ECEI SERVICES, INCLUDING COSTS IN RELATION TO INITIAL DIAGNOSIS AND TESTING FOR POTENTIAL ECEI PARTICIPANTS
For several months the NDIA has been focused on the review of plans for children aged 0-17 years who entered the NDIS as participants under the eligibility criteria for developmental delay or disability. The aim of the plan reviews was is to test the participant’s eligibility for ongoing services under the NDIS. In order to address the high numbers of children in the Scheme and to implement the ECEI model in the ACT, the NDIA has commenced conducting scheduled and unscheduled plan reviews for this cohort in the ACT aged 0–17 years. A total of 2,974 plans are required to be reviewed. As part of the review process, an assessment of participants’ ongoing eligibility to access the Scheme is being undertaken. EACH will also be undertaking these plan reviews for children 0-6 years in partnership with the NDIA and will Directorate, Office for Disability.
F) THE EVIDENCE OF THE EFFECTIVENESS OF THE ECEI APPROACH
The NDIA is yet to communicate the evaluation framework to assess efficiency and
effectiveness of the implementation of the ECEI Approach. The ECEI Approach cites key
research used to inform its development, and the evaluation will ideally utilise the research
findings to inform its scope. The KPMG report1 discussed the analysis of effectiveness of
intervention while highlighting the complexity of determining efficiency in this area. The
Victorian literature review2 also referred to in the Approach concludes “evidence based best
practice pedagogies are possibly the most effective and economically efficient early
intervention strategy to support positive developmental outcomes and improved life
chances for all children.“3 The paper further suggests these best practice approaches must
experience renewal on a regular basis and that there is provision of ongoing ‘trans- professional learning opportunities’ in provision of information to families.
The NDIA has provided no information on how it will ensure ECEI services provided to
children and their families reflect not only recent research and evidence based approaches, but also regular connections with other services and clinicians. Additionally, there is no information from the NDIA on how the effectiveness of ECEI approaches will be measured.
Of particular interest will be stakeholders identified for consultation in any evaluation undertaken, including the mechanism used to discuss process and EI outcomes with families, especially families experiencing vulnerabilities. The ACT expects to be included in work regarding the evaluation and scope of any evaluation measures.
The ACT Government has noted that for many ACT participants undergoing plan reviews, the control, choice and quality life experiences and outcomes for participants is of concern. In
1 KPMG (2011), Reviewing the evidence on the effectiveness of early childhood intervention, Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) 2 Department of Education and Early Childhood Development (DEECD), Victorian Government (2009), Early Childhood Intervention Reform Project: Literature review 3 ibid 1 p57
- recent months plans appeared to be increasingly based on an off-the-shelf reference
package rather than a serious consideration of the participant’s own aspirations and goals.
G) THE ROBUSTNESS OF THE DATA REQUIRED TO IDENTIFY AND DELIVER SERVICES TO
PARTICIPANTS UNDER THE ECEI
The NDIA has not shared with the ACT the data and evidence base used to determine the
size and scope of the EI partner services. Over several months the ACT has held bilateral and
trilateral discussions with the NDIA regarding the high number of children in the Scheme and
the estimated number of people eligible for the NDIS in the ACT.
The higher than anticipated numbers of children entering the Scheme in the ACT may result from the NDIA’s delayed implementation of EI. The ECEI approach was not adopted during the trial and only commenced in May 2017. Additionally, the ACT was the only jurisdiction during the trial not to have Local Area Coordinators (LAC) implemented. This is likely to have led to the underutilisation of plans. Families didn’t have access to a LAC to support their connection to service providers.
The ACT welcomes the introduction of the ACT ECEI approach which is an opportunity to link families to appropriate supports and providers, but is concerned there is inconsistent understanding and implementation of the Early Intervention Rule. The ACT has also raised concerns about the inexperience of planners in this area and the resulting higher than expected number of children in the Scheme and apparent lack of understanding of the expected outcomes of intervention approaches. The ACT remains concerned there appears to be a lack of expertise in the Assistive Technologies and Environmental Modifications.
H) THE ADEQUACY OF INFORMATION FOR POTENTIAL ECEI PARTICIPANTS AND OTHER
STAKEHOLDERS
The ACT endorsed the much delayed NDIA Communication Strategy for the children 0-17 Plan Review Process prior to letters being sent to parents of participants. These letters outlined requests for information and explained the review process. However, the Directorate, Office for Disability. 12
THE ACCESSIBILITY OF THE ECEI APPROACH, INCLUDING IN RURAL AND REMOTE AREAS
The NDIS environment is complex involving multiple agencies. The child may often receive services under NDIS packages and from community support agencies (as well as Health and Education).
While communication is not always as effective as it needs to be or the pathways as clear as they could be, accessibility for families using the ECEI Approach is enhanced by the user friendly language in the publication, and the relative absence of too much clinical terminology. The commitment to localise access to the Scheme is evident in the ACT with the co-location of the ECEI partner with the ACT Child Development Service.
Families of children with disabilities have expressed concern to Healthcare Access At Schools staff regarding their interaction with NDIS. Comments regarding access have included:
- difficulty with using the portal;
- lack of communication from NDIS;
- lack of consideration for access – for example asking carers to attend evening information sessions even though they are full time carers;
- lost paperwork requiring repeat applications;
- early intervention not occurring due to time delays or not meeting eligibility criteria; and
- significant time delays to access services. One parent stated that “In the past when my child needed a service we were referred and able to access without cost. Now, we are waiting for months for services to deliver care, and we have the added burden of paperwork. NDIS has meant I can choose”
THE PRINCIPLE OF CHOICE OF ECEI PROVIDERS
The ACT’s single ECEI partner was selected by the NDIA through a tender process. This follows an earlier NDIA process in the ACT to support market development and establishment of non-government service provision.
Further growth in the therapy sector may need to occur to better meet the principle of choice for families. The demand for speech pathology and the limited uptake of psychologists as providers in the ACT impacts on this principle. A single ECEI partner could be cost effective in the long term if the evidence base informing the practice is strong and the provider is actively engaging with relevant groups to build inclusive connections; these connections will enable long term support for families within their community. The NDIA has not provided evidence that it has communicated an expectation for the ECEI partner to take an inclusive approach with community to build long term, strong connections with relevant groups such as playgroups or new parent groups.
In addition to the limited number of providers, parents often do not have the necessary information to assist them in making a decision as to who would be the best provider.
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lack of information may be an additional challenge from parents from culturally and linguistically diverse background, particularly if they have limited English proficiency.
K) THE APPLICATION OF CURRENT RESEARCH AND INNOVATION IN THE IDENTIFICATION OF CONDITIONS COVERED BY THE ECEI APPROACH, AND IN THE DELIVERY OF ECEI SERVICES
The NDIS ECEI Approach makes reference to key research pieces used to underpin practices and services for children with developmental delay or disability. In particular, the KPMG report4 provides an exploration of early intervention effectiveness, and finds that use of functional assessment (determining needs and strengths) is appropriate for targeting of services to individual children and family circumstances5. Given the ACT was not involved in establishing the scope of the services provision or any intended evaluation process, it is not clear how the NDIA applied this research in determining the delivery of EI services.
Actual scope of the ECEI Approach does not outline how eligibility for short term EI services by the EI partner outside of the Scheme’s eligibility criteria will be determined. The sensitivity of functional assessment tools to identify developmental needs of children is still to be demonstrated in the application of this Approach.
L) ANY OTHER RELATED MATTERS
Aboriginal and Torres Strait Islander community connection and diversity
It is important that consideration be given to how the ECEI partner will engage with the Aboriginal and Torres Strait Islander community given a number of families experiencing vulnerabilities in the ACT are Aboriginal or Torres Strait Islander, or from culturally and linguistically diverse backgrounds. The ACT is interested to know the number of Aboriginal and Torres Strait Islander staff employed by the NDIA and the ECEI provider to ensure ECEI communication is effective and process is culturally sensitive. The NDIS Aboriginal and
4 KPMG (2011) 5 Ibid p92
Directorate, Office for Disability. 15
Opportunities
Co-location of the newly established EI partner with CDS provides the opportunity for stronger partnering and access to local knowledge and stakeholders; it is anticipated this stronger partnering and sharing of information could streamline access to services for families.
Local connections with Aboriginal & Torres Strait Islander communities are an opportunity still to be fully utilised with the co-location of CDS and the EI partner. However recent operational changes negotiated through the NDIA at the request of the ACT may address this.
Risks
Evidence from families interacting with the Community Services Directorate indicates that
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Mainstream services are increasingly being utilised as families seek to deal with lack of clarity on service pathways and timely access to EI Services. Access to mainstream services in the private sector will also be dependent on family income.
The ongoing provision of in kind services by the ACT Government through the Children and Young People’s Equipment Loan Service (CAYPELS) currently ensures continuity of care for families of young children with equipment/assistive technology needs. However, in kind provision cannot extend beyond transition and there are budget pressures impacting on the long term provision of CAYPELS. Private providers in the sector access this service for clinical trials and loan equipment for children with NDSI support packages. This additional cost pressure is unaccounted for with no interim arrangements in place with the NDIA.
Community Services Directorate
August 2017
Directorate, Office for Disability.
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