Skip to main content

Submission SUB-B3F1-000677 (Anonymous)

Submission reference
SUB-B3F1-000677
Submission type
General submission
What are your three main problems or concerns with the NDIS?

1. I am concerned that there are barriers for accessing NDIS for families with lower educational levels, non-English speakers and especially the parents of children with complex needs, who struggle to navigate the system, complete the forms and advocate for themselves and their families.
2. I am worried about inequity of access; it appears that access is based on the ability to trigger the correct wording, rather than on actual need, which could be related to the fact that assessments of the application are not necessarily made by persons who have the appropriate medical/ nursing/ allied health background to understand the complexities of disability.
3. I am concerned about the significant variability of NDIS providers and would like to be certain that providers are not 'taking advantage' of the unwary, in terms of charging for 'unnecessary services'

How do these three main problems affect you and/or others?

1. Many families that I have worked with do not complete NDIS applications as find the process too daunting. They are often people from NESB or lower SES areas, and they need significant support to even contemplate applying, let alone managing to fill in the required forms. They do not have a clear understanding of the process and many are 'knocked back' despite true disability and give up. I have had to support repeated applications for some families, who eventually do have a positive outcome, but this is in the context of a multidisciplinary public hospital clinic, with already tight resources. Staff put it extra work to support such families and the process is frustrating, time-consuming and unsatisfactory for all, leading to delays in therapy. Often the gap between NDIS funded therapy is filled by the public hospital, which defeats the purpose of NDIS and makes the situation even more confusing for families, who then expect the hospital to continue to provide the service for the lifespan of the patient. I believe that the NDIS should be supporting access to local therapies, to provide families more options for suitable therapists and to take pressure off the public hospital system.
2. Inequity of access means that families with children with disability do not always have access to equitable funding packages, meaning some children are potentially missing out on valuable therapies, whilst others seem to have 'excess' funding and this appears to depend on the parents' ability to advocate, write good English and have access to support or people who can advocate on their behalf. Families who don't have good verbal and especially written English skills, mental health issues, any adversity will not be able to gain the appropriate funding within the current model.
3. Variability of NDIS providers affects my patients directly and the family need to have experience to be able to tell if a provider is providing the appropriate amount of therapy. I have seen examples of therapists managing children without adequate experience of their underlying condition and this could lead to adverse outcomes, even death. It is highly concerning that some therapists do not liaise with specialist therapists for guidance and it is up to families to change therapists. The wait lists for therapists are long and children will again miss out especially for early intervention, which needs to happen at the developmentally appropriate stages for most benefit. Having therapists who can advertise services yet have no knowledge of a condition is fraught with danger. This is especially true for paediatric services provided by adult trained therapists.

What do you think are possible solutions to those problems?

Solutions to reduce barriers and inequity;
1&2. Please simplify the forms, provide easy access to support for completing the forms, communicate the process for NDIS application including the required paperwork, examples of applications (with appropriate/ relevant wording examples) widely within the community including in different languages, eg TV/ radio/ leaflet campaigns. Currently, the barriers appear to be there to ensure that as few people as possible 'bother' to apply, and this should not be the case.
If an application is rejected, provide clear reasons and suggestions for reapplication.
Employ assessors who have medical/ nursing/ allied health background and train those who do not. Disability is a complex topic and people do not fall neatly into a category; this must be taken into account during the application process. Often genetic conditions are listed as an immediate inclusion; however, not all conditions have a known gene (yet) and there has to be an option for those with rare conditions without a name (yet) to be included.
Access should be based on need rather than a diagnosis per se and the aim should be about enabling a person to participate in life to the best of their ability.
3. Please have a process of monitoring NDIS providers more closely, encourage families to provide feedback, communicate consequences for NDIS providers who 'rort the system'. I would like to see a system where participants are given the appropriate level of support, and not simply put on weekly therapy because there is funding. Does every NDIS participant have to have an overseeing health professional to work as a team with NDIS providers to ensure the appropriate level of therapy? If one therapy is weekly, and means that a child misses out on another therapy, this could be detrimental to developmental progress. Is it up to the parent to oversee this? or a specialist medical team or multidisciplinary team? or GP? whose responsibility is it to ensure that appropriate therapy is taking place? and how to address a situation where appropriate therapy is not taking place?

What parts of the NDIS are working well for you?

The self-managed fund is an excellent option for families who have the appropriate experience and understanding of their child's disability and needs, good enough English language skills, and the mental tenacity to keep advocating for their child.
Early intervention when provided appropriately makes a huge difference prior to starting school and can change the developmental trajectory for a child with a disability; this includes school and social participation which has a long term positive impact.
Ongoing funding (after 7) for children with severe disability allows them and their families to have a good quality of life, to participate at their 'best possible' level, and their parents feel empowered, supported and validated.

Is there anything else that you would like to tell the NDIS Review?

I would like to see a simpler process for all applicants and a more inclusive, carefully controlled process with oversight of therapies