AOTJ Update

How has the NDIS changed participation, inclusion and independence for people with a disability?

Dr Tammy Aplin,Editorial Board Member, Australian Occupational Therapy Journal

Photo: ©gettyimages /portishead1 The Occupational Therapy week theme of participation, inclusion and independence celebrates our core role of supporting people to engage in activities they find meaningful. Reflecting on this theme, I wanted to explore how the introduction of the National Disability Insurance Scheme (NDIS) has impacted the participation, inclusion and independence of those we support. The Australian Occupational Therapy Journal has published a few articles describing participants’ perceptions and experiences of the NDIS. Many in the profession were hopeful that the NDIS would enable occupational therapists to more easily and flexibly support people towards a meaningful life, with choice and control. Eight years on what has transpired from the marketdriven scheme may not be what we had hoped, but there have been some positive changes, along with hope for the future.

One significant change in the participation of people with a disability, has been the enhanced or new role of “informed consumer”. For some this change from passive recipient to active consumer was welcome, creating freedom to choose providers who would meet their needs best1. However, research with participants of the NDIS suggests this role can also be onerous, complex, time consuming and at its worst exclusionary. Adult participants and potential participants of the NDIS identified the need to be knowledgeable of the NDIS system and the services and

The expectation that in-depth knowledge of the system is required to gain appropriate support places significant additional burden on participants of the scheme ...

supports available, before choosing the best services to meet their needs. A participant described, “If you’re not receiving support and you’ve got to go in for your [NDIS] planning meeting uninformed about how the system is, you’re not going to get the same kind of funding support as the one who goes in informed” (p. 43).

The expectation that in-depth knowledge of the system is required to gain appropriate support places significant additional burden on participants of the scheme and disadvantages those who are unable to communicate or advocate1. The NDIS is considered excessively challenging to navigate and manage. Smethurst et al. (2020) spoke with parents of children with cerebral palsy receiving NDIS funding who reported the experience was “horrendous”, “life destroying” and a “nightmare experience”. The depersonalised nature and consistently poor communication and administration processes resulted in frustration, stress and negative participation outcomes for the families2. Participation was restricted for these families through lengthy processes, rejections and poor understanding by NDIS decision makers about assistive technology that could support children with cerebral palsy to participate in family life. Delays in equipment provision, restricted the family’s participation with some becoming socially isolated because they did not have the right equipment to participate in social or leisure occupations2 .

While the additional role of “informed consumer” of the NDIS has been a negative participation change for many people with a disability and their families, there have been positive changes. People with a disability highly value being able to choose providers and to discontinue if unhappy with a service1 and some parents were grateful for what the NDIS could provide, hopeful that “maybe this is a system trying to find its feet” (p. 212)2. Additional recent articles in the Australian Occupational Therapy Journal also highlight the opportunities the NDIS provides in supporting the participation and independence of people with a disability, for example the opportunity to fund assistance dogs3 and increased access to functional training and support to enhance the participation and independence of people with intellectual and developmental disabilities4 .

While hopeful, these studies have discussed that the NDIS has somewhat changed for the worse, the participation and independence of people with a disability. However, this is based on two articles with limited scope, and we must continue to explore the experience of a range of participants of the NDIS. This work will help to inform occupational therapy practice in the sector, along with NDIS policy and processes.

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