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Response to the Discussion Paper on Improving the NDIS Experience

10 Oct 2019

Boy and lego

Improving the NDIS Experience: Establishing a Participant Service Guarantee and removing legislative red tap

About Noah’s Ark

Noah’s Ark is a non-government organisation that has been in operation since 1971. Noah’s Ark provides services to children with disabilities and other additional needs and their families and carers. Noah’s Ark operates from 20 centres across metropolitan and regional Victoria, as well as one centre in the ACT and another in Albury NSW. Last year these programs reached over 2,200 families. Noah’s Ark currently receives funding from the Victorian Government (Department of Education and Training) for the delivery of Early Childhood Intervention services and has regional involvement in the Kindergarten Inclusion Support, Pre-School Field Officer and Parent to Parent Programs. In addition, Noah’s Ark provides training and resources nationally and internationally.

Noah’s Ark has been active in the development of services for young children with a disability nationally and has strong links to the early childhood intervention field internationally. Noah’s Ark has been involved in the National Disability Insurance Scheme (NDIS) from its commencement, through our services for children in the Barwon and ACT trials. Currently we are involved in the roll out throughout Victoria. Since the introduction of the NDIS, Noah's Ark has increasingly supported children in primary school in addition to its previous roles in the early years.

Noah’s Ark welcomes the opportunity to comment on the discussion paper ‘Improving the NDIS Experience: Establishing a Participant Service Guarantee and removing legislative red tape’.

John Forster, CEO


Noah’s Ark commends the NDIA on continually seeking feedback to improve the experiences and outcomes for participants and their families and is pleased to have the opportunity to contribute to this discussion. We support the notion of establishing a Participant Service Guarantee (PSG) which includes timeframes, principles and shared data regarding NDIA performance in meeting these new targets.

As nearly half of NDIS participants are children and adolescents1 , it is important that the best interests of children and their families are carefully considered in the development of the PSG. High quality Early Childhood Intervention (ECI) delivered in a timely manner will support some young children and their families such that they will not need to continue with the NDIS once they turn seven years of age. For others, high quality, timely ECI will reduce their support needs over their lifespan. Thus, ECI has a significant role to play in the sustainability of the Scheme. Current problems in the design and implementation of the Scheme are causing delays in service access that may negatively impact on children’s developmental trajectories, family wellbeing and the financial sustainability of the Scheme.


  • That the NDIA focus efforts on children and young people, nearly half of the current participants, in order to recognise their developmental needs.
  • That the NDIA establish a PSG with principles supporting the best interests of children and families and timelines against which performance data is publicly shared.
  • That the NDIA review it’s structures, communications and processes to improve its understanding and response to the needs of children and families.
  • That the NDIA urgently investigate and address the low numbers of infants and very young children entering the Scheme.
  • That the NDIA streamlines access requirements, enacting the legislation as delegated decision makers who are informed by the family, children and service supports that form part of their community.
  • That the current planning approach for children and families be reconsidered – it needs to be based on a system of approval that is timely and facilitates service access.
  • That ECEI Partners fulfil their original intent of facilitating access to high quality service delivery for young children and their families and supporting and educating families and communities regarding child development, disability, inclusion and best practice approaches.
  • That the NDIA recognises that service standards are only part of what needs to be developed. Specific standards and quality assurance measures for providers that serve children also need to be developed, monitored and reported.
  • That the NDIA recognises that service standards are only part of what needs to be developed. Specific standards and quality assurance measures for providers that serve children also need to be developed, monitored and reported.

Part One: Principles for NDIA Service Standards

Noah’s Ark supports having principles underlying a Participant Service Guarantee. We would like to emphasise the need for the principles to be applicable to even the very youngest of participants and their families. The latest quarterly report1 identifies that 13% of participants in the NDIS are aged from birth to six years of age. 25% of participants in the NDIS are aged from seven to 14 years and 8% are aged 15 to 18 years. This means that nearly half NDIS participants, or 46%, are children and adolescents. Given the profile of participants, care is needed to ensure that the principles underlying the service guarantee reflect the needs of children and families.

To further develop a proportionate focus on children and young people the NDIA urgently needs to initiate new advisory structures so that people with expertise in the areas of children, young people and their families can assist the NDIA to develop the appropriate systems to support what is nearly half the participants of the NDIS. The current advisory structures, as illustrated by the work of the Independent Advisory Council (IAC), are essentially focused on issues related to adults. While the IAC acknowledges children in its work, it does not have either the focus or the specialist advisors required to examine the needs and promote the interests of children and young people. Specific and suitable recognition is required. With this child and family focus, the following are our reflections on the proposed PSG principles:


Timeliness is of the utmost importance to infants and young children with developmental delay or disability and their families and a critical principle for the Guarantee.

There is growing evidence that the number of infants in the Scheme is lower than were previously supported through the Victorian state funded ECI. This worrying trend is also being reported in other states and territories. It is challenging to be definitive about this as the NDIA does not publish data on the specific ages of participants entering the Scheme, however we know from our own data, and that of other ECI services, that the number of clients under the age of two years is alarmingly low. We also know of families who had their babies diagnosed with conditions such as Down Syndrome in utero, or at birth, that did not begin receiving services until six months of age or more. This is an inadequate response that is not in the best interests of the child. As it is currently operating, timeliness to the NDIS for young children and their families is extremely concerning.

Having a child diagnosed with a seriously disabling condition in utero is an emotionally impactful experience for a parent-to-be2. The provision of timely support for families in this situation is essential3. Relationships are central to child development and children require dependable and responsive attachment relationships with adults from birth4. The first few years of life are a sensitive time for brain development5. If caregiver responses to a child are optimal, development is enriched while a lack of responsiveness or responses that are not reliable or appropriate, may have lifelong impacts on brain development, learning and physical and emotional wellbeing4. Supporting parents in developing positive and responsive relationships with their children is an important part of an ECI professional’s role6 and the timeliness of this early support is critical.


In order for this principle to be upheld, NDIA staff need to be attuned to the culture, values and circumstances of families in order to engage with parents of young children in a responsive way.

This principle focuses on ‘working with’ or ‘engaging’ participants but could also indicate a concept of co-design that enables the voices of families and children to be heard in order to continually improve the processes and procedures of the Scheme. We recommend the approach of co-design, however the particular circumstances of parents of young children with a disability must be considered. Parents who may be feeling overwhelmed by their current situation and have limited experience of the service system to enable them to make informed choices require sensitive and responsive approaches to engage with the NDIA.


It is important that NDIA staff have a thorough understanding of child development, family centred practices, inclusion, best practice approaches and developmental disability. It is also important that they have the necessary qualities to quickly build rapport with parents’ in order to be responsive to their priorities and needs.

However, ‘professional’ may be a more suitable term to use for this principle. Viewing professionals as the ‘expert’ is an out-dated concept in ECI. Part of the evolution of family centred practice over the last decades has included acknowledgement that parents are the experts on their child, rather than professionals. Historically the ‘experts’ told the family what was ‘wrong’ with their child and how they might remediate the child’s disability. The expert decided what the goals and priorities were and the best strategies for addressing them. A more contemporary family centred approach values the skills and qualities of the professionals and also acknowledges the parents as the experts on their own child. This partnership is critical in supporting parents in their parenting role and building on their current skills.


A connected, or integrated, service system is critical to the success of the NDIA reform.

As it is currently being implemented, there is a lack of connectedness between the NDIS and the rest of the service system for children with a disability and their families. Prior to the roll-out of the NDIS, ECI was well integrated into the Victorian state government’s early childhood and education service system. They were administered together by the same government department and universal programs were for all children with an inclusive focus. Children with a disability are now receiving services through a separate service system – the NDIS. This separation has been exacerbated by NDIS having an adult-centric focus despite nearly half of participants being under the age of 19 years1 . There is a lack of understanding of child development and family needs in policy and practice and a lack of cohesive service delivery.

This disruption to an integrated services system has been a significant challenge for school-aged children with a disability due to the ongoing tensions between state government funded education services and the commonwealth funded NDIS. Similar tensions are evident for those children with a disability and co-morbid mental health problems. Whilst service duplication is important, an integrated, well-connected service system that responds to individual child and family needs is critical.

Decisions are made on merit

‘Transparency’ may be a more suitable term to use for this principle. The lack of transparency has been a primary challenge throughout the rollout of the NDIS. The merit of decisions can only be determined if information is made available in a timely and accessible way for participants and professionals alike.


The Guarantee description of accessibility, that ‘all people need to be welcome, respected and supported to access information and services that are suited to their individual needs’ is extremely important. We have been pleased to see changes in practice that are now providing more responsive services for marginalised communities. For example, better access to interpreting services and changes in the Price Guide for to manage cancellations are welcome.

As it is currently being implemented, many disadvantaged families including Aboriginal and Torres Strait Islander people and those from Culturally and Linguistically Diverse backgrounds are not accessing the NDIS; experiencing long delays in getting plans; and not engaging with service providers on receipt of their plan as they have not had sufficient support to navigate the service system. Many families also report having difficulties using the NDIS Portal. Our own experience at Noah’s Ark is that well-educated and empowered families are getting service plans quicker and getting greater funding allocations. Ensuring greater access for marginalised families must ensure the provision of information in community languages, ready access to interpreters, community advocacy services and training for NDIA staff in culturally sensitive practices.

The principle of accessibility has further significance for families with young children with a disability. The NDIS legislation provides a clear definition of when a child with a disability should be granted access to the Scheme7. Whilst we support the definition, we are concerned about the limitations of implementation. The alarmingly low number of infants and young children entering the Scheme indicate that there are significant problems with access. Some of these problems may include being deterred by the title ‘Disability’ when parents view their child as having a temporary delay8; complexity of forms and processes9; the loss of traditional referral pathways; and the lack of capacity for Partner Agencies to focus on community education and capacity building since having planning added to their role10.

Part Two: THE NDIS participant experience

a. Eligibility and application

As described earlier, there appears to be a dramatic decrease in the number of very young children receiving ECI as a direct result of the NDIS. The issue of the youngest children not receiving services was initially raised by the Association for Children with a Disability (ACD). We confirmed the concerns through our own data. In August 2019, Noah's Ark was working with 31 children aged under two years out of a population of 1704 children under seven years, or 2%. This is a significant decrease since services were funded by the state government. We have subsequently confirmed similar trends with other disability services organisations and the Victorian Department of Health and Human Services (DHHS). This situation is also being reported by colleagues in other states who have suggested that the access to NDIS of children under three years of age needs to be monitored as a matter of urgency The NDIA does not release information on participants by specific age so it is not possible to substantiate this at a state or national level.

It appears that the NDIA has adopted a different approach to funding young children with a disability than was the practice in the past. Specifically, children are only getting plans when they have a demonstratable functional deficit arising from their disability. There appears to be a disconnect between access to the Scheme through the identified disabilities in List D and the actual receipt of supports. In addition, List D is being applied to refute eligibility for babies that have complex genetic disorders not specified on List D11.

This change in approach represents a significant departure from ECI as risk minimalization. It highlights a lack of understanding in the NDIS planning approach of early development, the role of families and the need to support families to provide the best environment to foster their child’s learning and development. It also indicates a lack of understanding about how disability impacts on children’s development.

The risks to development associated with many disabilities are well understood. While it is not possible to predict the exact impact of a disability on a particular child, it is possible to predict the range of likely impacts. This means it is possible to prepare a child’s family to both the developmental risks faced by their child and how they can best respond to support their child’s developmental needs. Through providing the most supportive environment for the child and providing the child with the best developmental opportunities the intention is to minimise the impact of the disability on the child’s development.

Early intervention is particularly important in early childhood because it is the period in which humans experience their most rapid growth. During this period the foundations for the future adult develops. It is also a significant time because of the plasticity of young children’s brains. Early intervention from birth to adolescence which strengthens functional brain activity is critical to achieving functional independence, a central tenant of the NDIS.

Entry to services has certainly become more onerous since the introduction of the NDIS. In the Victorian ECI systems this gateway was called ‘Central Intake’ and it was administered by the Department of Education and Training (DET). Central Intake was staffed by specialists in early childhood and disability. The role of these teams was to establish eligibility, provide informational support about the nature of ECI services and to provide linkages and supports while children and families were waiting to access ECI Services. The priority was for children to access services as quickly as possible, although waitlists often frustrated this intention.

Under the NDIS, the Gateway has become much more complicated. Determining eligibility and funding allocation now involves a Planning Process that includes setting ‘goals’ and developing a ‘plan’. In the Victorian system the setting goals and developing of plans was not done by Central Intake. It was something that families did directly with the service that was supporting them as a necessary step in deciding how to support their child’s development.

Access to the NDIS has also proved challenging for parents of children in the ‘defined category’ who are making the transition from state funded ECI. Families are being required to prove their child’s disability, are not being contacted by the NDIS or not engaging with this new service system – particularly those who are Aboriginal and/or Torres Strait Islanders or from Culturally and Linguistically Diverse communities. Historically many families were supported by other professionals in the community to learn about ECI and how to access it. Many of these professionals such as early years educators, Maternal and Child Health Nurses, Paediatricians and other community health professionals seem unclear about the referral pathways. They need more support and information to help families refer their child to the NDIS.

Access could be eased for families if there was continuity of care so that parents could interact with the same NDIS representative wherever possible. to ensure timely access to services and to reduce the stress involved for families. Having to repeat their story in order to access services can be stressful for many families and this stress can negatively impact on family functioning12.

b. Creating the Plan

Noah’s Ark recently provided a comprehensive response to questions posed by the Joint Standing Committee on the National Disability Insurance Scheme regarding NDIS planning. 

In summary, our report outlined the following:

  • Current planning processes take too long, do not fit with best practice in ECI and are unsuitable for children and their families who require a more flexible, timely and less stressful approach.
  • The experience, expertise and qualifications of Planners vary greatly as does their ability to understand and address complex needs.
  • Planners require knowledge of child development, inclusion, developmental disability and principles of best practice.
  • There are insufficient numbers of Planners for the current expectations regarding planning.
  • We recommend that the expectations of Planners could change rather than the number of Planners. Suggested changes include providing a generic, flexible plan to most families immediately upon access being approved and support young families to access a Key Worker to conduct a more detailed plan over time and begin providing immediate services. 
  • Make annual reviews optional for families rather than compulsory. These changes would address other problems identified such as the incidence, severity and impact of plan gaps; incidence of appeals due to families being given detailed rigid plans by someone who does not have a genuine understanding of their circumstances; and the reduced quality of planning experienced by rural and regional people e.g. longer waits, more likely to be offered a phone plan or to meet in a public place closer to the planner.

In response to the questions posed in this current discussion paper regarding planning we would like to add the following:

  • Parents are not given reliable and accessible information about how children learn best and how ECI services can help them
  • Planners lack of knowledge regarding child development and disability can lead to unintended insensitivities which can have a significant negative impact on families. For example, when a planner asked a parent of a nonverbal child with ASD “How many words does he use, 0-50 ,50-100 or over 100? and “Does he speak in sentences?”
  • Families should be provided with appropriate support to make informed choices about management of funds, making claims and paying invoices when self-managing, logging into MyGov and the Portal.
  • Planners could provide an agenda for every meeting, preparation tools to help families reflect and consider, and information about local services and supports.
  • The NDIS could provide information about who the participants Planner will be – staff turnover presents difficulties for families when they don’t know who to contact or who is likely to contact them.
  • Parents are being subject to voracious marketing from providers who do not provide services in line with the NDIA best practice guidelines.
  • Plans focus on the child and do not take account of other family members.

c. Using and reviewing plans

The planning process is designed with an assumption that the participant is an adult who knows what their needs are. A distinct planning process for young children and families’ needs to be developed.

In practice, it is the service provider for children and young people who helps parents use their plan, not the NDIS Planner. The service provider for children and young people regularly reviews and revises the plan in response to the developmental needs of the child and the changing circumstances of both the child and family. These changes generally occur much more rapidly for young children than for adults due to their rate of learning and development.

In most instances, it is not necessary for parents to be continually returning to the NDIA to have the plan revised. However, when there is a change of circumstance that does require review of the plan because of the funding allocation, a timely response is required. In general, our experience of reviews has been that they take many months to resolve. For example, a family received a revised plan with that was for another child. This administrative error made by the Planner took many months to be rectified.

Lack of transparency is a common complaint from families:

  • Who is making the decision? The delegate or planner?
  • What stage of the process are we at?
  • What is the likely wait time?
  • Where do we send the reports?
  • Have the documents have been received?
  • Who can we speak to for an update?

The most significant challenge is that it takes a long time to receive an outcome. For example, many families have requested adjustments from a self-managed plan to NDIA managed plan as they did not feel that they received enough information about the demands of self-management in the planning meeting. Some also felt that this was not explained at all, and they were then presented with a self-managed plan. When they have tried to change this, it has taken many months.

Specific difficulties occur with using and reviewing plans in relation to Assistive Technology (AT). At times, when requests and reports are submitted and approved, the plan stops, and a new plan begins without warning or notification. Knowledge of the AT application approval has only been known when invoices for claims have been rejected due to portal bookings ending abruptly. This is particularly challenging when families access services and supports from other service providers, as we do not know when an AT application is submitted by another organization.

Sometimes plans cease without a review meeting date being set despite the family making numerous calls to the NDIA or ECEI Partner/LAC. Alternatively, we have also experienced review meetings for a current plan at exactly three months prior to the end date with very little notice. Neither situation works well with families.

Flexible, generic plans with optional reviews may be suitable and preferable for some children and families. This would leave for time for reviews to occur for children whose circumstances change (e.g. children with who need equipment quickly and where planning for a whole year is difficult). Moving to a process of optional annual reviews would reduce parental stress, waiting times for those who need a first plan or elect to have a review, and save the scheme significant costs.

Part Three: Legislation

Problems with the scheme seem to be more the result of implementation and interpretation than with the NDIS Act. For example, the description in the Act of who should access ECI is perfectly serviceable but in practice, infants and young children are missing out on vital early support.

One aspect of the legislation would be helpful to change is the requirement for an entirely new plan for any minor amendment. This is problematic for families and service providers. A more flexible approach is required that enables plans that can accommodate any minor amendment.


Noah’s Ark recognises that the NDIS is a major social reform that will take time to implement in a form that best responds to all its participants. We acknowledge that it is both an important and challenging initiative. We also acknowledge that it faces major establishment and implementation issues.

The experiences of the families we work with have varied. Some families have had good experiences. Families can purchase important services and supports through the funding provided by the NDIS. Some families are successfully supporting their child’s development through high quality services.

However, there are also many negative experiences reported by families and staff. Problems include knowledge, skills and actions of planners; lengthy delays; poor communication; inefficiencies; family stress from the process/experience; significant rural/regional disadvantage; and disadvantage for other marginalised families (e.g. CALD, ATSI, parental disability). There are systemic problems in how the NDIS is being conceptualised and implemented for children and their families.

Best practice approach provided to children and families as early as possible can in some cases prevent a child’s developmental delay from becoming a permanent disability. In other cases, early intervention can reduce the impact of a disability or delay on both a child and their family, enhancing the child’s development, wellbeing and participation and improving the family’s knowledge, confidence and quality of life. Effective service provision to children and young people has an important role in the ongoing sustainability of the NDIS by reducing future dependence on services. Services for school-age children can then build upon these early gains to give young people the best chance of becoming adults who can be fully participating and contributing members of their communities.

Noah’s Ark has made the following recommendations:

  1. That the NDIA focus efforts on children and young people, nearly half of the current participants, in order to recognise their developmental needs.
  2. That the NDIA establish a PSG with principles supporting the best interests of children and families and timelines against which performance data is publicly shared.
  3. That the NDIA review it’s structures, communications and processes to improve its understanding and response to the needs of children and families.
  4. That the NDIA urgently investigate and address the low numbers of infants and very young children entering the Scheme.
  5. That the NDIA streamlines access requirements, enacting the legislation as delegated decision makers who are informed by the family, children and service supports that form part of their community.
  6. That ECEI Partners fulfil their original intent of facilitating access to high quality service delivery for young children and their families and supporting and educating families and communities regarding child development, disability, inclusion and best practice approaches.
  7. That the NDIA recognises that service standards are only part of what needs to be developed. Specific standards and quality assurance measures for providers that serve children also need to be developed, monitored and reported.
  8. That the NDIA recognises that service standards are only part of what needs to be developed. Specific standards and quality assurance measures for providers that serve children also need to be developed, monitored and reported.

Appendix 1


Quality Area 1: Family

Family-Centred and Strengths-Based Practice: is a set of values, skills, behaviours and knowledge that recognises the central role of families in children’s lives. Family-centred practice is 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. Culturally Responsive Practice: creates welcoming and culturally inclusive environments where all families are encouraged to participate in and contribute to children’s learning and development. Practitioners are 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.

Quality Area 2: Inclusion

Inclusive and Participatory Practice: recognises that every child regardless of their needs has the right to participate fully in their family and community life and to have the same choices, opportunities and experiences as other children. All children need to feel accepted and to have a real sense of belonging. Children with disability and/or developmental delay may require additional support to enable them to participate meaningfully in their families, community and early childhood settings.

Engaging the Child in Natural Environments: promotes children’s inclusion through participation in daily routines, at home, in the community, and in early childhood settings. These natural learning environments contain many opportunities for all children to engage, participate, learn and practise skills, thus strengthening their sense of belonging.

Quality Area 3: Teamwork

Collaborative Teamwork Practice: is where the family and professionals work together as a collaborative and integrated team around the child, communicating and sharing information, knowledge and skills, with one team member nominated as a key worker and main person working with the family.

Capacity-Building Practice: encompasses building the capacity of the child, family, professionals and community through coaching and collaborative teamwork. The goal is to build the knowledge, skills and abilities of the individuals who will spend the most time with the child in order to have as great an impact as possible on the child’s learning and development.

Quality Area 4: Universal Principles

Evidence Base, Standards, Accountability and Practice: ECI services comprise practitioners with appropriate expertise and qualifications who use intervention strategies that are grounded in research and sound clinical reasoning. Standards based on these ECI key best practices will ensure ECI practitioners and services are accountable to continuous improvement and high-quality services.

Outcome Based Approach focuses on outcomes that parents want for their child and family, and on identifying the skills needed to achieve these outcomes. ECI practitioners share their professional expertise and knowledge to enable families to make informed decisions. Outcomes focus on participation in meaningful activities in the home and community with outcomes measured and evaluated by ECI services from a child, family and community perspective. (Early Childhood Intervention Australia)


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11 (

12 Guralnick, M. (2005). An overview of the developmental systems model for early intervention in The developmental systems approach to Early Intervention: H. Brookes Publishing Co.

Related Resource



NDIS Review: A response to ‘moving from defining problems to defining solutions.’

Noah’s Ark welcomes the opportunity to comment on the Independent Review of the National Disability Insurance Scheme (NDIS). .

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