Submission to the Joint Standing Committee on the NDIS
Inquiry into General issues around the implementation and performance of the
NDIS
May 2021
Table of Contents
INTRODUCTION ………………………………………..
BACKGROUND……………………………………
RECOMMENDATIONS…………………………….
ISSUES ……………………………………………….
Results …………………………………………
Plan implementation……………………….
DISCUSSION……………………………………..
Complexity of the NDIS system…………
Common delays and insufficient information.
Choice and control……………………………
Access waiting and planning …………….
CONCLUSION ……………………………………….
REFERENCES ……………………………………….
Introduction
I welcome the opportunity to make a submission to the Joint Standing Committee on the National Disability Insurance Scheme regarding ‘general issues around the implementation and performance of the NDIS’.
This submission concentrating in particular on the provision of services under the NDIS Early Childhood Early Intervention Approach with a specific focus on the needs of children with Autism Spectrum Disorder (ASD). The research undertaken found a wide range of experiences among both families and service providers regarding the preparation for the NDIS and their first experiences engaging with the system. It focuses on Family’s and the failure to understand what their plans entitled whilst transitioning to the NDIS, particularly among disadvantaged families. The findings demonstrate implications for further transition and sustainability of good practice.
Background
The National Disability Insurance Scheme (NDIS) is a social and economic reform that is aimed that bettering the lives of hundreds of thousands of participants and their families and carers through a focus on improved outcomes. The ’system’s central purpose is to enable people with disability to exercise choice and the pursuit of their goals and the planning and delivery of their supports.’1 Considering the significance of the legislative and policy reform involved, the scheme has offered much promise to address the long-standing difficulties of a fragmented service system.
It is crucial to gain insight into how the progressive initiative is making progress by concentrating on the views and experiences of people using the system. Therefore, the research I conducted involved discussions with a family with a child on the autism spectrum alongside a few of people living with disabilities to learn about how they have been navigating the NDIS system. These discussions offered some valuable insight into the challenges that people were experiencing transitioning to the program and understanding their plans and having control over their care.
Under the program there have been a variety of intervention practices that have been
designed for children on the autism spectrum. The Early Childhood Intervention (ECEI) approach provides services for young children with developmental disabilities. The approach provides timely support to children with developmental delay or disability to approve their functional outcomes and built the capacity of their family to support their development. However, there have been concerns for the one size fits all approach the program implements as children and families vary in their preferences and priorities.
Recommendations
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Recommend that the NDIS provide nationwide information sessions for parents and carers of children who have ADS to learn more about the services available to them for whenever policies change.
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Recommend the NDIS to commit the necessary resources to address delays experienced by families to access services available to them.
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Recommend the NDIS, as part of its Quarterly Reports, needs a report on the average time it takes for eligible children to get a plan under the Early Childhood Early Intervention (ECEI) pathway.
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Provide families with independent information and preparatory guides/leaflets about the NDIS that is easily accessible and culturally appropriate.
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Inform families about the progress of their application in real-time through possibly emails or mail.
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Develop more formats of information and preparation resources (leaflets, emails, brochures, information sessions).
Issues
Case Study: Shannii* family with 7-year-old autistic child
Shannii* family live in Sydney with their 8-year-old son who is on the autism spectrum. Initially, after prognosis family was unaware of the NDIS and had struggled for years with funding, care, and early intervention therapies for their son. However, in 2020 the family
Results
The parents reported that there was lack of information on what kind of therapies were available prior to transitioning into the NDIS system. “we had no knowledge of the therapies our son would need”. “When we got our plan, we went for the standard plan that was recommended to us. Not much time was spent trying to explain to us that options that were available that in hindsight could have accommodated our son’s needs more.” The parents noted that they did little to no knowledge of what there or if there was nothing to get and this has led to them struggling to find at home care for their son as their budget does not cover that service. Research revealed that “parents voiced their needs for supports related to broader needs of the family system as they are not considered in planning.” The Shannii* family reported that they cannot access some therapies that are crucial to their son’s development and are having to wait until our funding is finished.
Moreover, considering the families limited resources (e.g., childcare) cultural background and with a child with complex needs (e.g., challenging behaviour) the mother reported that they were some inequalities in service provisions with put their family at a disadvantage.
Plan implementation
Further, research revealed that a substantial amount of knowledge was required to work the complicated system. As a parent from an African cultural and linguistical background the Shannii* family faced particularly long delays and extreme challenges whilst working with
Discussion
Complexity of the NDIS system
Research revealed that whilst there was ‘some satisfaction with the process, there was a host of concerns about the complexity of the process including the planning, coordinating, care packages and so forth.’ Many of the concerns raised were that the NDIS had not made things any clearer for people with disabilities and that the process was yet another ‘complicated system with too many different moving parts and numerous opportunities for miscommunication or breakdown of continuous care.’ The 2019 Review of the National Disability Insurance Scheme Act 2013 found that this was one of many issues of the NDIS which made it difficult for individuals to navigate.
Common delays and insufficient information
Families have also been experiencing common delays, communication issues and inequalities in the NDIS planning, approval, reviewing process. The Shannii* family noted that phones and emails were not being answered and the phone provided was generic and no one could answer questions about their case or not provide further details about their application or timelines. This limited information and communication hampered their parental choice in asserting the type of supports they perceived a need for.
Choice and control
The NDIS legislation pillars are those of choice and control however evidence reveals parents particularly those who have prior information could make more informed decisions despite the limited resources.11 Research also revealed that some people said they had choice under the NDIS which permitted them to emphasise therapy types as they felt appropriate. However others complained about how prior to the NDIS they did not have any idea of the therapies their autistic children or family members required based on lack of information and thus the plans they ended up with did not accommodate the needs of the disabled.12 This led to concern about the amount of service provision that some families received, and several parents felt that missed out on important types of support that were covered before the NDIS.13 Already the exercise of control and choice is far more complicated for families with young children on the autism spectrum as they must consider a number of parental, child or program related factors in deciding among the best suited service options for their children.
Access waiting and planning
Families experienced challenges related in delays of assessment plan development and implementation as well as a plan emphasis on child individuals’ goals. These delays were a “multiplicity of factors contributing to these challenges including limited information and poor system coordination.”14 Recommendations have been that ‘service workers at the planning stage familiarise themselves with the varying needs of autistic children.’15 It is understandable that given the multiple moving parts of the NDIS and ECEI it is nearly impossible to guarantee individual relationship. However, social care providers and professionals can ‘upon recommendation ensure that comprehensive information about the nature of services for people with autism and their families are available in the appropriate language and easy to read formats.’16 It can be suggested that professional assessment can be
Conclusion
The NDIS has the potential to revolutionise support strategies for people with autism. The rollout of the NDIS represents a major challenge, and the community is committed to ensuring the scheme works as it should: improving choice and control for Australians.
This submission highlights the recurring issues, in particular aspects of the administration of the NDIS, which ought to be addressed to ensure continued efficient implementation of the NDIS.
17 Susana Gavidia-Payne, ‘Implementation of Australia’s National Disability Insurance Scheme: Experiences of Families of Young Children with Disabilities’ (2020) 33(3) Infants and Young children.
References
Journal Articles
- Debrohah Warr et al., ‘Choice, Control and the NDS: Service users’ perspectives on having choice and control in the new National Disability Scheme’ (2017) University of Melbourne.
- David Tune, ‘Review of the National Disability Insurance Scheme Act 2013: Removing the red tape and implementing the NBIS participant service guarantee’ (2019) Canberra Government Services.
- National Disability Insurance Agency Submission to Joint Standing Committee, Inquiry into National Disability Insurance Scheme, July 2020.
- Susana Gavidia-Payne, ‘Implementation of Australia’s National Disability Insurance Scheme: Experiences of Families of Young Children with Disabilities’ (2020) 33(3) Infants and Young children.
Legislation
- National Disability Insurance Scheme Act 2013 (Act).