The NDIS has a parent problem. Changes could involve parents more in disability support and reduce stress

The National Disability Insurance Scheme (NDIS) has seen increasing numbers of children with developmental delay or disability receive support within clinical settings. It’s also seen reduced support in other settings, including home and school.

Bruce Bonyhady, often referred to as the father of the NDIS, and who has two sons with a disability, is co-chair of the review underway into the scheme. He said recently:

The overwhelming feedback we’ve received through this review is that families want their child supported in the settings where they normally live and are educated […]

Our recent article, published in the Australian and New Zealand Journal of Psychiatry, highlights how existing NDIS guidelines are falling short for parents and carers of children with disability.

The importance of home-based and parent- or carer-integrated support for children with disability appears to have been lost. The consequence: many families and NDIS providers are unsure about how to access or provide parenting support.

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Read more: 20% of children have developmental delay. What does this mean for them, their families and the NDIS?

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Parenting children’s unique needs

Parenting programs provide valuable opportunities for parents to acquire the extra skills needed to develop a better understanding of their child’s unique needs.

As a result, children can improve their communication and capacity for play, and day-to-day living skills.

Parenting support does not need to be intensive, but rather delivered at critical times – during the child’s preschool years and at various important transitions. It can range from providing high-quality parenting information, to online workshops, to group and one-on-one programs that provide tailored advice and an opportunity to practice skills.

Specialist programs can support parents to understand and manage challenging behaviours (such as uncontrolled crying or hitting, that can be harmful or interfere with learning), increase quality of family life and community participation. Such support can also improve parent and carer wellbeing, and help to reduce the stress experienced by many parents of children with disability.

But since the introduction of the NDIS, parents report difficulty accessing parenting support. And services that used to provide support say they are no longer able to do so.

An NDIA spokesperson told The Conversation:

The National Disability Insurance Agency (NDIA) acknowledges the significant role parents and carers play in supporting loved ones living with disability.

The NDIS forms one part of the disability ecosystem, supporting Australians and their families to ensure those living with disability can lead a fulfilling life.

Despite recognition of the central role parents and carers play, there is a lack of clarity around who is responsible for providing parenting programs.

Whose responsibility is it?

The only reference to parenting programs in the NDIS Guidelines comes in the section describing what child protection and family support systems should be offering.

For families who are not involved in the child protection system, the guidelines say the NDIS is:

[…] responsible for supports that families need as a direct result of a child’s developmental delay or disability, and that help families and carers sustainably maintain their caring role.

These may include social and recreation support, therapy and behaviour supports, short breaks or respite, or assistive technology. It is not clear whether parenting programs are included.

We know the NDIS can pay for “training for carers and parents”, because it’s in their price guide. However, it is unclear whether such training covers specialist parenting programs.

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Read more: More children than ever are struggling with developmental concerns. We need to help families connect and thrive

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What the NDIS Review can do

The NDIS Review – due to be handed to state and federal disability ministers at the end of October – presents an opportunity to re-prioritise the main agents for change for children with disability: their parents and carers.

A number of initiatives, if incorporated into NDIS policy, would help optimise the development of children and reduce family stress. The NDIS could:

-- explicitly state parenting programs for children with disabilities are funded under the NDIS

-- maintain a list of best-practice parenting programs for children with disability that can be used as a resource to inform the decision making of parents, carers, NDIS planners and service providers

-- track and provide aggregated data on the nature of supports funded, so the delivery of parenting programs provided through the NDIS can be monitored.

An NDIA spokesperson said:

The NDIA is looking forward to the release of the NDIS Review, and will continue to work alongside our participants, as well as their families and carers, on implementing any recommendations stemming from the Review.

Parents and carers are their child’s first and most important support. Parents should have the flexibility to seek out high-quality parenting support and programs that have been found to be effective for children with a disability. They can also advocate for the initiatives listed above.

Increasing parents’ capacity to provide enduring high-quality support will build children’s independence and social skills, and be part of the solution to ensure the equitable sustainability of the NDIS.

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The authors wish to acknowledge the contribution of colleague Catherine Wade to this article.

Trevor Mazzucchelli is a co-author of Stepping Stones Triple P – Positive Parenting Program and a consultant to Triple P International. The Parenting and Family Support Centre is partly funded by royalties stemming from published resources of the Triple P – Positive Parenting Program, which is developed and owned by The University of Queensland (UQ). Royalties are also distributed to the Faculty of Health and Behavioural Sciences at UQ and contributory authors of published Triple P resources. Triple P International (TPI) Pty Ltd is a private company licensed by UniQuest Pty Ltd on behalf of UQ, to publish and disseminate Triple P worldwide. He has no share or ownership of TPI, but has received and may in the future receive royalties and/or consultancy fees from TPI. TPI had no involvement in writing of this manuscript. Trevor has a child with autism and accesses support through the National Disability Insurance Scheme. He is also a member of the Parenting and Family Research Alliance (PAFRA), a multidisciplinary research collaboration of experts from leading Australian universities and research centres. The alliance is actively involved in conducting research, communication, and advocacy pertaining to parenting, families, and evidence-based parenting support. PAFRA is supported by the Australian Research Council Centre of Excellence for Children and Families over the Life Course.

Bruce Tonge is a co-author of the evidence-based parenting programme Pre-schoolers with autism (Jessica Kingsley Press UK) for which any royalties are returned to research. He is also a chief investigator on NHMRC MRFF Research Grant. APP119968 Evaluation of a New Brief Intervention for Childhood Autism Spectrum Disorders (2020–2023). He is also a member of the Parenting and Family Research Alliance.

Kirsten Baird-Bate has an autistic child and accesses support through the NDIS. She is also a member of the Parenting and Family Research Alliance.

Sharon Dawe is co-developer of the Parents under Pressure program (www.pupprogram.net.au). The PuP program is owned and disseminated by Griffith University. Proceeds from dissemination are distributed in accordance with Griffith University policy. Sharon is also a member of the Parenting and Family Research Alliance.