Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s NDIS General Issues Inquiry

Submitted by: Alan Smith Chief Executive Officer of AEIOU Foundation | Alan.smith@aeiou.org.au

Introduction

AEIOU Foundation welcomes the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS). We support the objective of the committee’s General Issues Inquiry to identify broad systemic issues relating to the implementation, performance, governance, administration, and expenditure of the NDIS. Such ongoing scrutiny of the scheme will support improvement to its functionality and overall sustainability for the wellbeing of Australians with a disability.

We acknowledge this inquiry coincides with the Federal Government’s review into the NDIS, announced by the Minister for the National Disability Insurance Scheme, the Hon Bill Shorten MP, on 18 October 2022, with a final report due in October 2023. We have also participated in this review and note that the Independent Review Panel indicated that they would consider submissions made by individuals and organisations to previous Inquiries by the Joint Standing Committee into the NDIS.

This submission draws on AEIOU Foundation’s vast expertise and experience in the field of autism-specific early intervention for children with high support needs. We look forward to further engaging with the Joint Standing Committee on the National Disability Insurance Scheme and reading the final report.

About AEIOU Foundation

AEIOU Foundation is Australia’s leading provider of autism-specific early intervention for children under six years of age. Operating 11 centres across regional and southeast Queensland, South Australia, and the ACT, AEIOU supports around 300 children each year. Over 18 years, AEIOU has supported and equipped thousands of children to develop the foundational life skills required to independently increase their social, educational, and economic participation in the community.

An expert transdisciplinary team of clinicians and educators support the children. Working with the family, they share the responsibility of assessing, planning, delivering, and evaluating each child’s individual plan. Teams are comprised of speech pathologists, occupational therapists, behaviour analysts, teachers, early childhood educators, early intervention specialists and allied health assistants. The service integrates therapy, education (meeting the Early Years Learning Framework [EYLF]) and care in a holistic, naturalistic setting. Children who are typically unable to access mainstream settings in an inclusive and supportive manner are engaged to actively participate in both therapy and EYLF and are supported to achieve their individual goals at AEIOU.

Our mission is to enhance the lives of children with autism and their families, through evidence-based, successful early intervention programs and practical support.

We believe children:

Have a right to early intervention
Benefit from therapy based on individual needs
Learn using different learning styles and at different rates
Are individuals, with differing personalities, needs, wants, interests and levels of ability
Require flexible routines in their daily program to cater for their individual needs
Should receive evidence-based early intervention and access to appropriate assessment
Are entitled to a balanced program that bridges the gap between the home, AEIOU Foundation and the community

And can benefit from families and staff working together

Families also have a right to support other members of the family unit and to work and participate in the community.

Executive Summary

The NDIS provides valuable support to individuals with disabilities and their families. However, AEIOU has identified several challenges and opportunities with the current implementation of the NDIS, outlined below, for the committee’s consideration.

The lack of a CPI increase in NDIS price guides for allied health professional services since 2019, despite service providers facing increasing costs such as staff wages, puts a significant strain on the finances of providers like AEIOU and threatens the viability of our business.
Groundbreaking “real world” data released by AEIOU in March 2023 reveals autism-specific early intervention makes a significant impact on the developmental gains of autistic children, while economic analysis shows that every dollar invested into such services results in a societal return of $6.16 to the community, and from that, a direct cost saving of $4.58 to the NDIS. This makes a strong case for improved funding in early intervention. To be eligible to provide support, service providers should be accountable for the evidence of their programs and its outcomes.
The process to enter the NDIS is complex and overwhelming for families, particularly those who are new to the disability sector and raising a child with social, communication and anxiety challenges. This is further compounded by the cost of diagnosis and extended waiting times to access appropriate assessment and diagnostic services. This delays an early entry into quality early intervention which is to the detriment of the child and the family.
There are significant funding barriers preventing many eligible individuals from accessing the clinically recommended support they need. This is particularly pertinent when scheme access planners or NDIA delegates do not follow professional clinical recommendations on reasonable and necessary needs for the individual.
More needs to be done to ensure that the market for NDIS services is well-stewarded, with better recognition of the value added by complex service providers like AEIOU Foundation and the challenges which impact sustainability.
Registered NDIS service providers are subject to a number of accountability measures, including audits, which unregistered providers are not. This inequity creates an unfair advantage for unregistered providers, who are able to deliver the same services as registered providers but without the same level of scrutiny. As a result, registered providers are at a financial disadvantage, as they must absorb the costs of compliance without being able to pass these costs on to consumers. To address this inequity, all providers who deliver services to a particular number of children (i.e., a benchmark) should be required to demonstrate similar levels of accountability.

Lack of CPI increase for allied health professional services

The lack of a CPI increase in the latest NDIS price guide for allied health professional services is a major problem for providers like AEIOU Foundation. From 2020-22, this was a direct cost of $1 million, and an anticipated deficit of $732,341 in 2023.

The NDIS price guide sets the maximum amount that providers can charge for their services, and has not been increased in line with CPI for allied health services since 2019.

For providers like AEIOU that deliver allied health services such as speech therapy and occupational therapy, this is a major problem. Not only is the employment market increasingly competitive, AEIOU is bound to deliver annual indexation to wages and faces increased costs across the business for training, utilities, insurance, and compliance requirements. The lack of consideration of rising costs makes it increasingly difficult for providers. As we have not been able to pass on these costs to our clients, it has put a significant strain on our finances and threatens the viability of our business.

A backdated CPI increase in the NDIS price guide is necessary to ensure providers can continue to deliver high-quality therapy services. This would allow providers to recover the rising costs of business and ensure people with disabilities continue to have access to the services they need. The NDIA maintains a standpoint that allied health fees are still within range of private practice. Whilst the benchmarking of fees may have been conducted, organisations that provide services solely to NDIS participants continue to struggle to meet operating costs.

Recommendation: We urge the Senate committee to recommend that the NDIS price guide is updated to include a backdated CPI increase for allied health professional services.

New research reveals benefits of early intervention

A recent study by AEIOU has found that every dollar invested in autism-specific early intervention results in a societal return of $6.16 to the community, and from that, a direct cost saving of $4.58 to the NDIS.

The study, conducted by Synergies Economic Consulting, found AEIOU’s intensive early intervention program equated to savings of approximately $297,000 per child over the child’s lifetime.

This economic data was released in March 2023, along with data released by AEIOU’s research team that revealed that children at AEIOU make significant gains in functional communication and fine and gross motor skills. On average, children commence after they have turned three, with 17% toilet trained. Upon completion of the program, 81% of children are fully toilet trained.

The data, based on longitudinal research of more than 850 children, shows that even when presenting with elevated levels of difficulty, children make very significant gains in early learning skills, catching up from their developmental delays at rates over and above what would be expected for a typically developing child.

The data can also be applied to other evidence-based, intensive early intervention settings.

These findings demonstrate the significant and lasting impact that early intervention can have on the lives of autistic children, their families, and wider society.

For further information on the economic benefits, please visit aeiou.org.au/research

Recommendation: We urge the Senate committee to recommend:

Intensive support plan budgets for early intervention services should be increased, as “real world” evidence shows it is an investment that will pay dividends for years to come.
Providers should be responsible for collecting and maintaining data to track the effectiveness of their service. This data should form part of the criteria for scheme entry and funding access for the cohort of children.

Scheme entry and reviews

The process to enter the NDIS is complex and overwhelming for families, particularly those who are new to the disability sector and raising a child with social, communication and anxiety challenges. This is further compounded by the cost of diagnosis and extended waiting times to access appropriate assessment and diagnostic services.

The NDIS does not cover clinical diagnostic assessments under the current model and many families can’t afford the out of pocket expense to access these services. This can be a significant financial burden, especially for families with low incomes. The length and duration of specialist’s waitlists to receive a diagnosis is also a considerable roadblock.

The shortage of allied health providers is a major factor in workforce shortages and long wait times for diagnoses. There are far fewer allied health professionals than there are jobs available, which is leading to strain on existing providers and difficulty in recruiting new staff. There is a high demand for services but a limited supply of providers.

Once diagnosed, there is a lag between applying for NDIS access and then getting a meeting with a planner. Additionally, the NDIS can be slow to approve plans for intensive supports. This is because the NDIA’s Early Childhood Partners (ECPs) and planners may not be familiar with best practice for early childhood intervention. As a result, families may have to go through multiple reviews before their child’s plan is approved.

These delays can have a significant impact on children with autism and their families. Children who do not receive early intervention may experience delays in development and social skills, while also missing out on receiving evidence-based best-practice intervention during a critical development period. They may also be more likely to exhibit behaviours of concern.

Families who are struggling to get their child’s plan approved may experience additional stress, fear of uncertainty and feelings of frustration. They may also have to spend a lot of time and energy advocating for their child’s needs. The NDIA needs to do more to streamline the process for approving plans for intensive supports.

This would mean ensuring that ECPs and planners are familiar with best practice for early childhood intervention. It would also mean making the review process more efficient and transparent.

Recommendation: We urge the Senate committee to recommend that:

The NDIS considers a scheme that assists to fund assessments for earlier diagnosis, removing a major financial barrier for the families of participants and addressing delays in accessing essential supports.

University courses are incentivised and career pathways related to paediatric allied health services are clearly defined to help boost workforce and combat long wait lists for autism diagnoses.
The NDIA needs to do more to streamline the process for approving plans for intensive supports.

Funding access and transparency

Once diagnosed and accessing the NDIS, participants and their families face inconsistent funding decisions. Ongoing assessments and clinical recommendations provided by specialists are often disregarded. This is exacerbated by the lack of clear guidance around how these funding decisions are made and what exactly is required to justify funding that matches clinical recommendations.

Funding decisions are inconsistent across regions and planners. Participants at AEIOU have noted that some access partners claim there are caps on plans they can approve, quoting that they “can only approve amounts of $60,000”. This conflicts with the funding guidelines and promise of individualised funding decisions. It is also in direct conflict with the NDIS’s commitment to ensuring transparency of information and upholding the choice and control of participants and their families.

There are also inconsistencies with plans across the various support needs. In some instances, two children with similar support needs receive significantly different funding plans.

The lack of transparency and bureaucratic delays result in children missing out on therapy during a critical developmental window. This increases the likelihood of their future increased reliance on the NDIS.

Commonly, about 80-90% of initial plan values held by participants seeking access to AEIOU’s service do not align with the clinical recommendations made by AEIOU’s specialist clinicians, external allied health, and medical professionals. This delays or stops enrolment until a review takes place. Deferred care is contrary to the benefits of early intervention, posing a significant risk to a regression of learnt skills, potentially traumatic outcomes, as well as the need for more expensive interventions in the future.

Research has shown that families raising children with disability experience financial strain. Funding shortfalls in these instances can mean children simply don’t access the supports they need, impacting families further with stress, worry and isolation.

Burdensome processes to obtain a NDIS plan can prove traumatic for families, especially when drawn out or repeated multiple times. This can lead to parents and/or carers not completing enrolment requirements in a timely manner, which can lead to occurrences of deferred care, or giving up altogether.

Another issue is the requirement for participants to consistently advocate for plan reviews and renewal. This is time-consuming and difficult, creating uncertainty about the availability of funding for the next period of care. This uncertainty can be detrimental to participants and their families, affecting their ability to plan and make informed decisions about care. Participants who receive the most funding in their plans are those with families that have the resources and capacity to act as strong advocates in this space. This favours parents or carers who have higher education, and can discriminate against families from culturally diverse backgrounds, or those with high needs of their own.

The funding and transparency issues also create challenges for service providers. As a not-for-profit organisation, these issues make it difficult for AEIOU to secure new enrolments, which affects cash flow and planning. AEIOU assists families navigating the bureaucratic process of securing or reviewing a plan with a family support team, consisting of a NDIS advisor and an enrolment specialist, at a cost to the business.

Recommendation: We urge the Senate committee to recommend that:

NDIS provides consistency and transparency around funding decisions. Ensure best practice planning and assessment with supporting evidence from a registered clinician that has ASD experience.
Create an automatic, transparent, and direct pathway through the NDIS for children who receive a Level 2 or 3 autism diagnosis, ensuring they have immediate access to at least 20 hours of ECEI support each week for two years. AEIOU’s research data demonstrates that intensive intervention is both safe and effective for this cohort of children.
Extend measures for auto-extension of plans (or reduced time frames for reviews) for participants requiring intensive funding to ensure continuity of services and funding.
Where possible, reduce the cost of access partners and administrative burden in determining reasonable and necessary supports by trusting the assessments and advice of clinical experts.
Work with service providers to further explore the criteria of ‘value for money’ to ensure transparency and enhanced information for participants, while removing access partner bias

Market stewardship

More needs to be done to ensure that the market for NDIS services is well-stewarded, with better recognition of the challenges for complex service providers like AEIOU Foundation. There needs to be better alignment between NDIA policy (including ECEI Reset) and pricing to ensure that service providers can reasonably afford to innovate, access and support evidence-based research and provide the integrated, holistic services demanded by the agency.

This is in direct support of the best practice for early intervention guidelines that the ECEI is founded upon through the NDIS, who commissioned these guidelines to inform the most effective approach in supporting children with disability with their development and functional independence across several domains of life.

Unlike other services that offer straightforward, per-session or per-hour models, such as specialist therapy services or personal support services, AEIOU offers a long-term early intervention model where children benefit from the support of a team comprised of highly qualified paediatric specialists with a deep understanding of autism, early childhood development, family capacity building, and complex case management.

This model of a full-time, quality, highly individualised service strongly aligns with NDIS and the Autism CRC early intervention guidelines. This approach also supports families to remain in the workforce as without specialists’ services, they would not be able to work, particularly for those children who are excluded or struggling in mainstream options. However, recognition of the cost and challenges associated with the delivery of this type of service is overlooked in the NDIA price guide and planners/delegates often underfund clinically recommended plans, restricting access to intensive support such as is provided within AEIOU’s services.

Finding and retaining allied health staff and assistants and specialist educators that are qualified and eligible to work in paediatrics (including with families) is a significant challenge for this sector. In

addition, the expense associated with ongoing clinical supervision, specialised learning support materials for children, and the ongoing innovation investment to ensure that all clinical programming reflects recent, high-quality research is a significant cost burden for our organisation that is not reflected in the hourly rates.

A greater appreciation of the quality of health and life outcomes, and the value for money an integrated, holistic service like AEIOU’s, will benefit young children immediately and also positively impact their future, their family’s life trajectory and provide cost benefits to the community and NDIS. Overall, we believe that addressing these challenges is crucial in ensuring that the NDIS can effectively support individuals with autism and their families.

It is important for the NDIS to recognise that children, and their families, who make clinical, educational and developmental gains because of intensive services, such as the complex ECEI model delivered by AEIOU, become less reliant on the scheme over a lifetime, with developed skills enabling greater independence and reduced levels of support.

Without intensive early intervention services which are designed to be safe, engaging, and effective in supporting children with their participation, and in developing core skills and working towards achieving their disability-specific goals, there will be a significant reduction in the market choices for families who want to access early intervention services in early childhood.

Recommendation: We urge the Senate committee to recommend the NDIS recognises the costs and benefits involved in integrated, highly accountable registered services like AEIOUs, to ensure the market is being managed in a responsible and sustainable manner.

Summary of recommendations

We urge the Senate committee to recommend that:

The NDIS price guide is updated to include a backdated CPI increase for allied health professional services.
Intensive support plan budgets for early intervention services should be increased, as “real world” evidence demonstrates the long-term investment cost benefit over the child’s lifetime.
Providers are responsible for collecting and maintaining data to track the effectiveness of a service. Reporting should form part of the criteria for scheme entry and funding access for our group of children.
The NDIS could consider a scheme that helps fund assessments for earlier diagnosis, removing a major financial barrier for the families of participants and addressing delays in accessing essential supports.
University courses are incentivised and career pathways related to paediatric allied health services are clearly defined to help boost workforce and combat long wait lists for autism diagnoses and service accessibility.
The NDIS does more to streamline the process for approving plans for intensive supports.
The NDIS provides consistency and transparency around funding decisions. Ensure best practice planning and assessment with supporting evidence from a registered clinician that has ASD experience.
An automatic, transparent, and direct pathway is created through the NDIS for children who receive a Level 2 or 3 autism diagnosis, ensuring they have immediate access to at least 20 hours of ECEI support each week for two years. AEIOU’s research data demonstrates that intensive intervention is both safe and effective for this cohort of children.

Measures for auto-extension of plans is considered (or reduced time frames for reviews) for participants requiring intensive funding to ensure continuity of services and funding.
Where possible, reduce the cost of access partners and administrative burden in determining reasonable and necessary supports by trusting the assessments and advice of clinical experts.
The NDIS works with service providers to further explore the criteria of ‘value for money’ to ensure transparency and enhanced information for participants, while removing access partner bias.
The NDIS recognises the costs and benefits involved in complex services like AEIOU to ensure the market is being managed in a responsible and sustainable manner.