Submission regarding early childhood intervention services in Victoria and NSW | External submission

Submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) Inquiry into:

February, 2018

About Noah’s Ark Inc.

Submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) Inquiry into: Market Readiness

Noah’s Ark Inc welcomes the opportunity to provide comment to the Joint Standing Committee on the NDIS Inquiry into Market Readiness.

Noah’s Ark has been involved in the NDIS from its commencement, through our services for children in the Barwon and ACT trials. Currently we are involved in North East Metropolitan Melbourne and the roll out into other areas of Victoria and southern NSW.

Noah’s Ark is a non-government organisation providing early childhood intervention (ECI) services to children with disabilities and other additional needs and their families and carers. We are increasingly involved with children in the early years of school.

We are the largest early childhood intervention service in Victoria, operating from 20 locations across metropolitan and regional Victoria, as well as being active in the ACT. Last year these programs reached over 1,800 families. Noah’s Ark currently receives funding from the Victorian Government (Department of Education and Training) for the delivery of ECI services, and has regional involvement in the Kindergarten Inclusion Support, Pre-School Field Officer and Parent to Parent Programs. Noah’s Ark was previously funded by the Australian Government (Department of Education) as an Inclusion Support Agency as part of the Inclusion Professional Support Program. In addition, Noah’s Ark provides training and resources nationally.

Noah’s Ark has been active in the development of services for young children with a disability both in Victoria and nationally and has strong links to the early childhood intervention field internationally.

For further information about this submission contact:

John Forster CEO Noah’s Ark Inc

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Introduction: Market readiness for provision of services under the NDIS

The terms of reference for this inquiry focus on transition to a market. They do not question the conceptualisation of that market that is being created by the NDIS. While the current phase is focused on the establishment of a market, and reporting is on increasing numbers of participants and service providers, the longer term question will be: was this a worthwhile investment?

It is a difficult question, because the NDIS is attempting to deal with people of different ages, disabilities, abilities and needs. This complexity may explain the NDIA’s textbook view of a market, in which purchasers make rational decisions and increasing numbers of service providers organically leads to better solutions.

Noah’s Ark has a focus on children and families and can offer its insights from this perspective. We believe there are some important things the NDIS could start to do to increase the likelihood it will be regarded as a worthwhile investment in the future.

Undertake market research

It is much more likely that the NDIS will succeed if it takes into consideration the experience of families raising a child with a disability in Australia in the 2010s. This includes undertaking its own research and taking advantage of an extensive international literature.

Develop processes that respect the challenges families face in adjusting to having a child with a disability.

For many families the experience of having a child with a disability includes:

Distress and disorientation
Dealing with unfamiliar services
Engaging in unfamiliar relationships with professionals

In this demanding situation it may be unreasonable and unhelpful to expect all families to make decisions about services or to be asked to manage funds. This may consume limited family energy at a crucial time.

Support the relationship between parents, caregivers and the child and recognise the interactive nature of this relationship

Families face a demanding situation in raising a child with a disability which means they need to build their understanding, confidence and the capabilities, so they can support their child and make decisions impacting their child and their family. Services for children with a disability will only be effective if they engage with the family. Children with developmental disabilities are most vulnerable when there are very young and when relationships with their care givers is just developing and there is the risk that this relationship will be compromised. Situations in which caregivers are not supported contribute to:

Increased stress on parents leading to depression and other stress related conditions
Higher than usual breakdown in parental relationships
Higher incidences of neglect and abuse
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Value participation by children with disabilities in early childhood services and school

Early childhood development requires an integrated approach. Participation in family life, childcare, kindergarten and school all contribute to children’s physical, cognitive and social development. A child with disabilities will maximise the benefits of services for all children when there is a systematic transfer of knowledge and understanding about his or her developmental needs between all adults in care giving roles. Consistency supports positive development: child with complex needs benefits from all adults in care giving roles understanding what their needs are. Children with a disability make a valuable contribution when they participate in the community.

Address the social barriers faced by children with a disability

The social model of disability identifies that the opportunities persons with a disability have can be limited by how community infrastructure, services and decisions are organised. Families and children with a disability continue to face discrimination and have more limited opportunities than other members of the community. This situation needs to be continuously improved.

Develop an outcomes framework

An outcomes framework should incorporate the above and is focused on children developing functional skills that enables participation in family and community life.

Recognise that the early years provide the foundation for later development and that early intervention is worth investing in.

If the foundations are not right, then it is unlikely that what follows will be effective. Investing in early intervention in the early years has sound economic benefits. It seems short sighted to not be investing in the relatively small costs of building the right foundations, when the downstream costs are so substantial.

We acknowledge the importance of the introduction of the Early Childhood Early Intervention (ECEI) Partners. This has been an important recognition of the needs of young children with a disability and their families. The suggestions made above would support the role of the ECEI in what is a substantial undertaking.

The following addresses the specific terms of reference.

Issue	Implications	Recommendations
Reference: a) The transition to a market based system for service providers
The NDIA is keen on promoting that the NDIS is a ‘generational change’. Given the significance of such a dramatic change, there has been very little attention given to the impact on organisations whose business had been based on grants funding and the cultural and administrative changes required to operate in a market. The NDIA has presented a Darwinian approach to the market survival of traditional service organisations. This is despite the significant role these organisations have played in the transition. They have been required to maintain client services while undergoing major restructuring. The scale of market failure, in the absence of transition management, is still becoming evident.
Capital costs	The high costs that non-profit organisations and other traditional providers have paid has made the introduction of the NDIS possible. The transition to the NDIS has required services to build new administrative systems including CRMs, NDIS compatible finance systems and to upgrade ICT. There has been a huge growth in consultation businesses selling solutions to disability services. This has been paid for from organisational capital, often built over many decades with community support. It is not clear how capital reserves will be replenished under the NDIS funding.	The pricing by the NDIA needs to enable organisations to rebuild their capital base.
Transition costs	The transition of clients from state services to the NDIS has been costly for service providers. There has been extended periods when services have not received funding either from the state government or NDIS. This has occurred when children and families start the planning process and State funding is cut and there is a delay in plans being approved by the NDIA, so families cannot engage services under the NDIS. It has meant services have had to carry the cost of retaining staff to be able to provide services once the NDIS plans have been put in place.	The intersection between State and NDIS funding needs to be coordinated so that there is no gap being paid for by services.
Change costs	Organisations have had to meet the cost of the NDIA continuing to modify its administrative requirements and portal. This has meant the constant reworking of systems and re-education of the workforce at a cost to the organisation.	The NDIA needs to give providers adequate notice of changes so that systems can be modified, and staff retrained.

Issue	Implications	Recommendations
Lack of public clarity	There continues to be a lack of clarity about the operations of the NDIS which costs organisations time in managing. There was no public evaluation of the trial phase, so there was no clarity about the rationale for decisions made in the full rollout. There is still a lack of clarity about decision-making processes within the NDIS. Guidelines for functions such as the ECEI partners are not publicly available.	The NDIA needs to publish the rationale for its decisions. The NDIA needs to publish guidelines for the programs it funds.
Reference: b) Participants readiness to navigate new markets
The experience for families with a young child with a disability has been mixed. Families already engaged in State funded services have been well supported in transferring to the NDIS. For families not involved in state services, the journey into the NDIS can be hazardous. The lack of transparent information about the NDIS, the disempowerment of key referrers such as paediatricians, the barrier created by the ‘disability’ branding and bureaucratic mazes have left many families waiting for over twelve months to access support or unwilling to approach the agency.
Lack of community information	Existing families Families who were in the state services for the transition to the NDIS have generally been well supported, although there have been gaps between state services finishing and the NDIS commencing. New families Families who were not involved in state services prior to the NDIS have been a disadvantaged by the lack of transparent information about the operation of the NDIS. The planning process and what comes from the planning process remain opaque. The introduction of the NDIS disrupted old patterns of referrals to services for children with a disability. Key referrers, such as paediatricians, continue to be confused by how the NDIS works and how to support families.	Community information about the NDIS needs to improve, particularly for families and referrers. Attention needs to be given to ensuring paediatricians and other key referrers understand the referral process and their role in it.
Branding: Early childhood and Disability	The initial branding of the NDIS showed a lack of awareness of the complexities of families with a child with a disability seeking support. This situation is starting to improve with the appointment of ECI partners. The complexity of early childhood disability is not recognized within NDIS processes. Many children with a disability do not have a diagnosis. The uneven development of children can mean that it takes time for a disability to be identified. Many families do not accept that the child has a disability easily. Approaching a service which is branded prominently as a ‘disability’ service is a challenge for them. To be effective, it is important to engage	The branding of ECEI Partners needs to prioritise that it is a service for children and for families concerned about their child’s development.

Issue	Implications	Recommendations
	with young children and their families as soon as possible. Some young children with a disability may have a diagnosis, but the manifestations of the disability may still be emerging. It is unclear if the planning process requires the identification of the impact of disability for it to be completed.
Gaps after planning	Families have experienced a gap in the NDIS process between receiving a plan and being able to implement that plan. The scheme has assumed that it is easy for families to approach providers and engage them in providing a service. This is not always the case. There needs to be processes in place to follow up with families to make sure they are engaging service providers. There is also an issue with the utilisation of packages. There is an assumption that families will find it easy to manage their package. This is not the case, as is evident by the vast underutilisation of packages in the scheme. Anecdotally, families are now being told that unless they spend their packages they will not receive the same amount in the future. This is inappropriate, given the lack of support families have had in undertaking this task.	The ECEI Partners needs to follow up families after a plan has been approved and provide additional support to enable families to engage services when required. The ECEI Partners need to discuss utilisation with families and work with providers to ensure full utilisation of funding packages.
Reference: c) The development of the disability workforce to support the emerging market
The lack of investigation into either the experience of families raising a child with a disability or appropriate services, professional training, best practice or specialisation means that the workforce required to provide services for young children with a disability and their families has not been defined. The minimal investment in developing the workforce is a major risk. Services for young children with a disability are provided by professionals who can easily transfer into the health or education sectors if the conditions in the NDIS become uncompetitive.
Purpose of services	There is a at lack of clarity about the work force that is needed to work with children with a disability. The NDIA has supported Early Childhood Intervention Australia to develop best practice guidelines in services for young children with a disability. These guidelines indicate the importance of professionals building partnerships with families and working with families in natural environments like the home and other community settings. These guidelines indicate that a skilled and specialised workforce is required to deliver best	The NDIA should undertake a workforce study on services for children with a disability, including a skills analysis, as a matter of urgency.

Issue	Implications	Recommendations
	practice services. There is a gap between recommendations supporting best practice and supporting the workforce in the NDIS to understand or implement best practices.
Skills	The lack of prerequisites for practitioners to have expertise, including training and experience related to working with young children and their families, means that some services in the NDIS will be of inadequate quality. Currently the cost of preparing staff to provide best practice services is met by individual service providers. The professional development of staff providing services for children would be more effectively and efficiently provided through sector-based training. There is an underlying assumption in how the market is perceived by the NDIA, that anyone trained as a therapist is also trained to work with young children with a disability and their family. This is not the case. Therapy courses do not train staff in early childhood development. Most do not train staff in family centred practice. Therapists employed by services for children with a disability require significant additional training and mentoring. Staff also need ongoing professional development to understand and implement best practice, including updating their understanding of their discipline, and the broader childhood sector. The costs of induction, mentoring and ongoing professional development are not included in the NDIS pricing. The introduction of the NDIS is leading to the departure of many specialist teachers from the sector, because the Scheme seems better suited to children with physical disabilities than intellectual disabilities. The structure of the price guide for children over the age of seven years excludes teachers. This is despite the considerable number of children with learning disabilities.	The NDIA should fund sector training on Best Practice as a minimum. The pricing for services for children under 14 years should include a loading for the induction and mentoring of staff entering the field. The NDIA should negotiate with the sector and universities the introduction of education on best practice services for young children with disabilities in relevant tertiary courses.
Specialisation	In the NDIS market more providers is seen as an indicator of success, for example the quoting of the number of registered providers. This is questionable when dealing with a small population like children with a disability. Many providers can compromise the capacity for services to specialise. If services only see small numbers of children with a disability, then they cannot develop the same depth of understanding as those who are focused on that population. The NDIA needs to balance its preference for large numbers of providers with the desirability of families being able to access a higher quality services.	The NDIA should conduct a study into the level of specialisation needed for services working with children to effectively deliver best practice.

Issue	Implications	Recommendations
Reference: d) The impact of pricing on the development of the market
Service up for young children with a disability are being adversely affected by business rules which do not support best practice. Best practice under an Early Childhood Early Intervention Approach is working with children and families in their home or community settings children attend, like kindergarten, childcare, and school. During the trial, travel was recognised as reasonable and necessary. Since full rollout standardised business rules have introduced travel limits which are inconsistent with best practice and particularly disadvantage children in rural areas. The restrictions on travel means many families cannot receive best practice services throughout the year, despite their choice, unless the service provider pays the full cost of travel.
Travel formula	The NDIS has introduced standardised travel rates which assumes that it is possible to drive at 60km and hour in metropolitan and regional centres. The effect of this rule and other discounting means that the reimbursement of travel costs does not cover actual travel costs and services are having to underwrite travel to achieve best practice.	The travel calculator developed by the NDIA should be replaced by one that reflects the actual costs of travel.
Travel limit for seven years plus	The introduction of a $1000 travel limit for all children over seven years of age severely restricts the amount of best practice service that can be provided at home or in community settings. It is a business rule that promotes poor practice by making it more economical for services to run centre based services that families travel to. This situation is much worse for children in rural areas. This business rule means that to achieve parental choice and best practice, services need to meet the full cost of travel, once the limit has been reached.	The travel limit rule for children over seven years should be withdrawn or modified.
Travel limit for under seven years	The introduction of a $3000 travel limit for all children under seven years of age means that families in rural Victoria cannot exercise parental choice to receive best practice services in their home or community setting throughout the year. Children in rural areas are being disadvantaged in comparison to children in metropolitan areas.	The travel limit rule for children under seven years should be withdrawn or modified.
Cancellations	The NDIA has introduced a rule that providers can only charge for 2 cancellations by clients per year. This does not recognise the level of sickness experienced by children or the speed with which they get sick. This rule has a significant impact on services working with young children. It is out of step with community practices.	The cancellations rule should be withdrawn or modified.

Issue	Implications	Recommendations
Reference: e) The role of the NDIA as market steward
The NDIA faces an enormous challenge in making wise use of the resources being committed through the NDIS, given the diverse needs of the population the scheme has been established to support. In addition to balancing the needs of a population comprising people of different ages and with different disabilities, the NDIA is also acting as a steward for government. There are tensions and conflicts in these competing interests and it is not clear that the governance of the NDIA has developed sufficiently to manage these. Children were a late addition to the development of the NDIS. The Australian government’s involvement in the sector was historically with adults. It is not clear that children and families have the representation needed to ensure the Scheme allocates its resources and develops in ways which are in the best interest of the child.
Expenditure on children	The NDIA quarterly reportsi have consistently indicated that the overall level of funding allocations to children is significantly lower than anticipated according to revenue. In the latest report expenditure was about half that anticipated. While some children are receiving large funding packages, this is offset by children receiving very small packages. This situation is made worse by the underutilisation. The latest report anticipates utilisation for 2016 -17 at just under 70% of the funds allocated. The NDIA has heavily publicised that the numbers of children accessing the NDIS is greater than expected. It has not reported on the low levels of expenditure on children. The higher than expected number of children in the NDIS reflects inconsistent application of eligibility criteria by the NDIS. This situation has nothing to do with children. The lower than anticipated funding for children and the underutilisation of packages means children have less resources and potentially poorer outcomes. On this analysis the NDIA is a poor steward of the interests of young children with disabilities.	COAG needs to be informed and investigate the level of funding for children through the NDIS and whether this is resulting in resources being redirected away from children to an older population.
Assessment	The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) is the assessment currently being used for screening and eligibility requirements for young children with disabilities. It is unclear that it is being used as indicated by its authors. For satisfactory use professionals need to be trained sufficiently in its administration. The way in which scores are being used are not consistent with the author’s intention. In its role as steward the NDIA needs to ensure the highest standards apply to any assessments it uses in making funding decisions.	The NDIA needs to establish an academic reference group to advise it on its measurement tools.

Issue	Implications	Recommendations
Reference: f) market intervention options to address thin markets, including remote indigenous communities
The NDIS is often targeting small populations. It targets 2% of children under 7 years. Once the context moves outside metropolitan and regional centres, then numbers of children are very small, and it is difficult to maintain high quality specialised services. This is not new. In the NDIS market it is not clear whether the requirement is access to a service or access to a quality service. The NDIS needs to prioritise maintaining quality services to ensure children and their families in rural and remote areas are not disadvantaged.
Specialisation	The NDIA needs to address the degree of specialisation required to ensure the quality of services for children with a disability. The quality of the services that children and families access will be determined by the level of specialised knowledge professionals have. To attract staff with specific skills in working with young children with disabilities the NDIA needs to address how to attract professionals into rural and remote areas. This includes attractive remuneration, professional support and incentives to relocate.	The NDIA should provide grants to organisations operating in rural and remote areas so they can attract skilled professionals.
Indigenous	The NDIS needs to specifically support the development of indigenous led services for children with a disability or the building of capability within other services to engage with the indigenous community. The engagement with the indigenous community requires time to build relationships and develop partnerships. Indigenous communities should nominate who they want to build relationships with.	The NDIA should provide grants to support indigenous organisations or organisations working with indigenous communities that deliver services to indigenous children.
Hard to reach families	Families that are disconnected from services are not considered in the NDIA market. While this is a small population, it includes children with increased risk of neglect and abuse. Families who are disconnected from services often come from low socio-economic backgrounds and have limited educational backgrounds. Once families do engage with services, they can be a highly demanding of time. There is no recognition it in the current NDIA pricing of the time involved with issues such as child protection. Services need to be encouraged and supported to meet the needs of disadvantaged children and their families.	The NDIA should provide grants to support organisations working with disadvantaged communities.

Issue	Implications	Recommendations
Reference: g) The impact of Quality and Safeguarding framework on the development of the market.
Noah’s Ark welcomes the introduction of a framework that aims to strengthen quality and safeguarding arrangements and reduce duplication of regulatory, contractual and other legal requirements. We would welcome an implementation design and roll-out timetable.
Information needs	The publicly available documents on the Quality and Safeguarding Framework provide high level policy information, but organisations are still waiting for further information on implementation design and roll-out. With NSW and SA due to be phased in from 1st July 2018, this leaves organisations little time to prepare.	Implementation and roll-out information on quality and safeguarding needs to be publicly available as soon as possible.
Children with a disability	The current framework discusses the supports and safeguards participants need in the planning, implementation and review processes. The document highlights that measures are needed to recognise the particular needs of specific populations such as children with a disability and their families (p. 30). This is critical to the success of the scheme, with an understanding that families are dealing will unfamiliar services and entering relationships with professionals at a time of distress and disorientation and adjustment. Whilst the introduction of the ECEI approach provides a positive step towards addressing this issue, it is not reflected in current practice across jurisdictions. Parents often report a lack of supports, particularly in the planning process.	The NDIA needs to specifically set out its expectations for services for children with a disability.
Quality in ECEI	As the roll-out of the NDIS is underway, there are clear inequities in quality and safeguarding arrangements. These pose a risk for participants. It is our understanding that sole practitioners entering the scheme by meeting the requirements of AHPRA registration, but this is inadequate. The framework needs to recognise the very particular quality requirements of services providing supports to children with a disability and their families. For example, the current Victorian Early Childhood Intervention standards include requirements related to ‘enhancing children’s development’, ‘family centred care’ and ‘early childhood education and care settings’ that are clearly important in the provision of quality services for young children and their families.	The NDIA needs to specifically set out its expectations for the quality of services for children with a disability that are to be met by all providers. The NDIA needs to address the inequities of a two tier approach to quality.

Issue	Implications	Recommendations
Costs	Organisations are being encouraged to grow and expand into new areas in this competitive market-based system. In doing this, organisations are grappling with the complexities and additional costs of meeting state and territory quality and safeguarding approaches.	The NDIA needs to acknowledge the additional transitional costs to organisations.

i National Disability Insurance Agency, (2017). Report to the COAG Disability Reform Council for Q2 of Y5, author, (pages 45 and 49)