NDIA Accountability Project

Market readiness for children with autism

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SUBMISSION

by

AEIOU FOUNDATION for children with autism

to the

Joint Standing Committee on the National Disability Insurance Scheme

on

Market readiness for provision of services under the NDIS

Contact: Greg Johnson General Manager AEIOU Foundation Tel: redacted

About this submission

AEIOU Foundation welcomes the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) on market readiness for provision of services.

As the largest social reform since the introduction of Medicare in Australia, the NDIS brings huge change, disruption and opportunities for providers and participants. Reviews carried out by the Joint Standing Committee on the NDIS are an opportunity to inform the final design of the scheme and ensure participants are afforded the best possible outcomes and providers can operate in a fair and equitable market.

Autism is the second most primary disability across all sites that have transitioned to the NDIS (28%). Most scheme participants at the end of 2016 were children aged 14 years and under COAG Disability Reform Council Quarterly Report (March 2017). With such a large number of families entering the scheme, it is vital there are consistent processes to ensure all receive the reasonable and necessary supports they need to achieve lifelong outcomes.

Transitioning to a market driven system has been a challenge for AEIOU Foundation, largely due to difficulties our clients have accessing the scheme. Families in Townsville, Toowoomba, Ipswich, Bundaberg and Adelaide, where the rollout has occurred for children under six, experience inconsistencies in access and funding. In South Australia particularly, few families are receiving adequate supports for early intervention, which is critically impacting our capability to provide lifelong benefits to children with autism. This not only affects children, families, and staff, it places lifelong financial burden on the community.

As a leading provider of evidence-based early intervention for children with autism, we are committed to providing every child the best opportunity to reach their full potential in life. Achieving this mission has been disrupted through the NDIS transition process. This submission outlines challenges and provides recommendations to improve participant and provider readiness in this new market-driven system.

About AEIOU Foundation

AEIOU Foundation is a leader in the provision of effective and affordable autism early intervention and family support in the Australia, and is committed to creating a lifetime of opportunities for children with autism, and their families.

Our program, which includes at least 20 hours of transdisciplinary therapy each week, in a long-day- care setting, is individualised for all children, built on evidence-based practices and acknowledges the Guidelines for Good Practice 2012.

Our staff of behaviour therapists and analysts, occupational therapists, speech and language pathologists, educators and skilled learning facilitators are all autism trained.

Families are supported through one-on-one meetings, workshops, home visits, community experiences and incursions, to build their skills and capacity to address behaviours that challenge, access the community and achieve lifelong outcomes.

AEIOU prioritises research and assessment, both internally and through external partnerships. In addition to our own Research Advisory Group, AEIOU Foundation is a key funding partner of the Autism Cooperative Research Centre, the world’s first national cooperative research effort focussed on Autism, which takes a whole-of-life approach to Autism Spectrum Disorder, from focussing on diagnosis, education and adult life. AEIOU is also a founding-partner of the Griffith University Autism Centre of Excellence.

A: the Transition to a market based system for service providers:

Challenge: The National Disability Insurance Agency (NDIA) has introduced a market-based system with little consultation and regard for operations of not-for-profit organisations delivering services to young people with disability.

  1. Recommendation: Greater support and information regarding Early Childhood Early Intervention (ECEI) supports needs to be available, to enable organisations to continue to deliver high quality services without impacting their viability. AEIOU also proposes a unified, process driven approach to transitioning and onboarding families to the NDIS across all rollout areas.
  2. Recommendation: Currently funding is limited to the delivery of the actual therapy solely. There is no consideration for the cost of running critical parts of the service provider such as finance, human resources, administration, building management costs. These departments, and others, are funded by way of donations and fundraising activities, with no certainty around fundraising year to year.

The NDIS puts choice and control in the hands of the person with disability. While AEIOU accepts this is intended to give families of children with autism flexibility on how to spend funds to live the life they want, it is in fact causing undue uncertainty and stress. Families of children with autism, who are already stressed and desperate for support, are extremely nervous about entering a process where they have had no knowledge or experience. To combat this, and ensure viability in this new market, AEIOU Foundation and other not-for-profit organisations, have been forced to use financial reserves to pay for staff and processes which will assist families with transition to the scheme. AEIOU has, in fact, had no choice but to employ an NDIS Support Coordinator to consult clients on the access process and ensure they are armed with relevant information and confidence to access the supports they deserve.

AEIOU has also been impacted operationally, through inconsistent rollout procedures across transitioning regions. With rollouts in Toowoomba, Townsville and Adelaide all managed by different access partners; AEIOU has had to review the intake and assessment process at each centre, which has affected our current, affordable models of operation. At some centres, we are tasked with undertaking functional capacity assessments, which are an additional burden on staff and budgets.

With families waiting unreasonably long times to access supports, our organisation has been forced to revise budgets and reduce spending while waiting for client access. In South Australia, for example, families are waiting at least six months to gain access to the NDIS.

In cases where families seek a review of the package approved, they are waiting a further 12 months for reviews. This is impeding enrolments in our service and, more critically, is impacting the lives of children with autism and their families.

By ensuring consistency across rollout areas, the NDIS can support organisations to implement productive and efficient processes, reducing stress on families, staff, budgets and operational procedures

B. Participant readiness to navigate new markets

Challenge: Not having access to early intervention due to NDIS rollout delays will have academic, social and financial impacts on children, their families and the community.

Recommendation: The NDIS needs to have consistent, simpler and efficient access to the scheme in all areas, to ensure no child misses early intervention.

It is referenced across many reports, including the Joint Standing Committee on the National Disability Insurance Scheme Transitional Arrangements for the NDIS (February 2018) that “the intake of participants is falling behind schedule. The transition period presents significant challenges…”

In AEIOU Foundation’s experience, the average wait time for families to receive supports to access high quality early intervention services under the NDIS is at least three months. In some regions, families are waiting up to 12 months for reviews.

Participant readiness is vital for disability service providers to operate in a market driven system. It is particularly vital for families of children with autism who are seeking early intervention. Research shows that “due to the nature of human brain plasticity, the earlier the intervention, the larger the impact on outcomes (Haggers-Algra, 2011)” and without it, there are social, academic and financial consequences.

In Brisbane and the Gold Coast, which rolls across to NDIS funding in July 2018, no access partner has been announced to date (20 February 2018). Families have not had opportunities to meet with the NDIS or access partners to discuss their needs and goals, and there is no guarantee they will access reasonable and necessary supports. Taking into account the average three-month wait time in an area where NDIS is established, there is little chance families of children with autism will have packages to access early intervention before November 2018.

For AEIOU Foundation, this will seriously impede operations across our services in Nathan, Gold Coast, Camira and Bray Park. It will be detrimental for our new Logan service, which is due to open in line with the region’s transition to the NDIS in July 2018. It is highly likely, at this stage, no families in Logan will have the supports necessary to access evidence based early intervention and we will be operating without clients. Not having access to early intervention due to NDIS rollout delays will have academic, social and financial impacts on children, their families and the community.

AEIOU understands while service providers are accessing NDIS workshops and information sessions, families are not attending. When they are, they are not receiving information relevant to their individual needs. In recognition of this in Logan, AEIOU is networking with disability support

Submission to the Joint Standing Committee on the NDIS | Market Readiness for the NDIS | 4

providers to offer information and support to the families that will be relevant to their needs. This grassroots community campaign is self-funded.

D. The impact of pricing on the development of the market

Challenge: The NDIS Pricing guidelines do not fit all programs and offer no flexibility for providers.

Recommendation: The NDIS price guidelines should allow for individual programs delivered in group settings, and allow for administrative, research and advocacy costs incurred by organisations which are efficient and effective.

As a provider of early intervention for children with autism, AEIOU delivers individualised programs within a small group setting. To achieve goals and outcomes, children will at times receive one-on- one support, and at maximum be working in groups of one staff to two, three or four children.

AEIOU Foundation’s recognised program does not fit within the NDIS Price Guide. At best, AEIOU can charge for supports under the category of ‘group based specialist interventions to assist a child with disability or developmental delay and their family in the home, care, community and education settings: Maximum group of four at $59.67 per hour’. The inadequacy of the pricing cap is restrictive to AEIOU Foundation’s renowned high-quality individualised program, and is a financial and administrative burden.

The NDIS Price Guide does not consider the requirement for the large amount of reporting to the NDIA nor, the development of the child’s individualised program nor, the initial and ongoing assessments of the child’s functional capacity. These tasks not only determines the success of a child’s individualised program to produce outcomes, but are necessary for funding reviews and vital for research, which contributes to evidence and supports advocacy programs.

Despite this inadequate pricing model, AEIOU continues to deliver its high quality service, which demonstrates outcomes through data analysis, to families of children with autism. We remain steadfast in our commitment to enhance the lives of children with autism and their families and benefit the community through early intervention learning along with practical and caring support. We are committed to ensuring every child is given the best opportunity to reach their full potential in life.

H. The impact of the quality and safeguarding framework on the development of the market

Challenge: For the NDIA to address the hurdles and red tape so as not to deter (genuine) quality service providers from participating, in one of the most important social and community changes in our history.

  1. Recommendation: Clearer guidelines on what is seen as an acceptable registered provider, with attention given to evidenced based therapy/services as it relates to autism.
  2. Recommendation: A framework that provides registered service providers a more streamlined pathway to assist families to gain access to the scheme and access to funding from the scheme.

There has to be real commitment from service providers, and the NDIA, to evidence-based models for moderate to severe autism, which includes measurable, quality outcomes for children and their families. There is a risk the scheme is funding treatments and therapies that have no scientific or medical supporting evidence.

Consideration needs to be given to registered service providers having a seamless regulatory framework as opposed to non-registered providers. Currently, both registered and non-registered are under a single framework. It is assumed that registered service providers have higher standards of quality assurance.