Will kids be kicked off the NDIS due to the Independent Review?

What's next Bruce.....?

Last week I joined a Q&A forum facilitated through the Child and Family Disability Alliance and Association for Children with a Disability. The forum was hosted by proud disabled woman and disability advocate Elly Desmarchelier and we had 90 minutes of questions from parents and families put to Professor Bruce Bonyhady, a key architect of the NDIS and Co-Chair of the NDIS Review.

The question I put to Bruce as the parent of an autistic child who is currently an NDIS participant was and has been somewhat of the elephant in the room for so many of us….

‘Will all children who are currently participant remain in the NDIS?’

His response I have paraphrased below…

If you are an NDIS participant your eligibility can be reassessed at any time. If you are a child who enters the NDIS via ECEI there is always the prospect that you will not meet the permanent disability requirements when your child turns nine. 

But I want to make a much broader set of observations and that is that you cannot fix the problems inside the NDIS unless you fix the problems outside the NDIS. And we know the scheme has become an ‘oasis the desert’ - the only support that families can access… and the only supports that children with developmental delay can access. And that was not the intention of the NDIS. Nor was it the intention that all children with a disability access the NDIS.

A key part of the review is this system of foundational supports that will ensure there is a continuous system of graduated supports for children to meet their support needs. 

The question of whether you get an individualised package (NDIS) or you don’t becomes much less important - what is really important is that all children receive support based on their needs and that their needs are picked up as early as possible and that they are then supported where they live, lean and play.

That is the vision we have for kids on this scheme.

Today, parents fight to get their kids on the scheme because it’s the only supports available, and then they fight to keep their kids in the scheme again because it’s the only support available. 

Schools are pushing it all back onto the NDIS which was not the intention of the scheme and it’s not good for kids and their families.  

A relevant follow up Question was asked;

“Will all children need to ‘re-meet’ the eligibility criteria?”

And the answer was….

Eligibility was always intended to be based on functional impairment not on medical diagnosis. A set of diagnosis lists were developed which created two classes of participants, those who had the easy access to (diagnosis on the list of eligible conditions) and those who weren’t had difficult access where they were required to produce more and more evidence.
There has never been an investment in best practice functional assessment. 

“Today we don’t know if we have the right kids in the scheme or not.”

Yes this is where we find ourselves!

Bruce stated that all kids throughout this transition would need to have their eligibility reassessed and then after that except for extreme circumstances, they would not need to provide their eligibility again. 

Another question posed was around the planning process (building an NDIS plan) and whether it should streamlined and if so how?

A. The planning process is needlessly stressful and repetitive where people are being asked to prove their disability again. The planning process needs to be undertaken by a trained needs assessor, who will meet with the family in the home (if that’s what they prefer). They need to understand the family dynamics in order to come up with a comprehensive needs assessment.

We are trying to move away from this ‘deficit’ approach to a strengths based approach. And how do we support families to best support their child? Because we know that children do best when families feel well supported…. We are trying to get to a situation where those planning meetings are a lots less stressful than they have been historically. And part of that is the amount of time that the needs assessment has. You need to give the family time to explain what is happening with their child and if needs be, come back and have another meeting. We expect that in every case the person who you meet with for planning will be the person who approves your plan and budget. 

There were a few other relevant questions which I have summarised below. Some of which I know will raise more questions. Keep in mind all of these are still recommendations, and the government have not committed to implementing any of them yet.

I also want to acknowledge that new tasks forces are being launched and some of these changes have already been in the pipeline for years. A prime example is that fact that the NDIA spectacularly ditched its ‘Partners in the Community (LAC) tender process back in mid 2022 despite the fact that it had been open since the 15th of March and providers would have poured significant resources into their tender submissions already.

This drastic move foreshadowed that big changes were afoot way back before any of the Review palaver was staring us in the face.

Q. Will Plan Management still exist?

A. No - essentially there will be a system where all payments will be visible to the NDIA. Everyone will essentially become self managers although it will be much easer and there will be assistance from a navigator. 

Q. Will budgets still be split into Core, Capacity Builging And Capital?

Core and CB will be combined into a single budget.
There will be separate funding category for Capital (high cost specialised equipment and more modifications). 

Q. Will participants still be able to use unregistered services and support workers?

A. One way the scheme has developed very differently to what we envisaged is this whole system of registered and unregistered providers. The NDIA don’t know who the 154,000 unregistered providers currently are, we don’t know what services they deliver - we don’t even know if they delivered the services they invoiced for. We know when we let the market run without any regulation that vulnerable people get harmed and we heard some shocking stories in the review about exploitation by unregistered providers. We also heard in the Review that the current registration system is not working and that it is not a guarantee of good quality. The registration system is completely broken. We have recommended that everyone in the new system has to be ‘visible’ and we’ve called this proportional regulation. At the moment it’s a ‘one size fits all’ regulation whereas where you’re talking about very low risk activity such as gardening, then regulation requirement should be very low. The more personal or intimate services become, the level of risk increases. If the services are complex and requite high levels of training there needs to be some minimum standard of qualification required. If services are delivered out in the community the risk is not as high as services provided in a group home.

Q. What does the review recommend in the area of family supports?

A. We need to to think about the chid in the context of the family because when families feel well supported their children are most likely to thrive. The other thing we thought about a lot was how do we build circles of support around adults with disability. Hopefully after the review families feel better supported than they currently do. 

Q. What’s next. When do these recommendations start?

A. There are a number of areas where there needs to be really close engagement with how the recommendations are implemented. An example is what foundation supports looks like and how do we ensure the functional assessment being used is robust and fair. These are topics that will require enormous engagement with the disability community. The big challenge for government is how do they do that at the same time as they make sure that the reforms take place at a sufficient pace to ensure that the scheme is sustainable. We said in total we thought it would be take five years to implement all of our recommendations. When you look at it, everything is urgent so there will need to be prioritisation. I think one of the most important priorities is kids and making sure there is support outside the NDIS as well as inside. 

A second question I asked via the Q&A was around the recommendation for LACs, Plan Managers, Support Coordinators and Psychosocial Recovery Coaches to be phased out with a new role taking their place of NDIS ‘Navigators’ who would be available to all Australians living with disability (inside and outside the NDIS) whenever they needed the support.

I asked this question because at the moment 1/3 of NDIS participants (about 300,000 people) have Support Coordination funded in their plan to access the support they need whereas Disability Intermediaries Australia have stated that we are looking at 1 million plus Australians looking for support from a Navigator.

I wanted to know where on earth would this workforce come from and how do we ensure the most vulnerable disabled people can access this support when and where they need it.

Unfortunately there wasn’t really an answer to this question. Bruce did state the workforce ‘isn’t really there yet’ and commented that perhaps Allied Health Assistants may be great in this role. 

Of course then we may begin to wonder where all these incredibly experienced and highly trained Allied Health Assistants are hiding…. and who will replace them if they become Navigators.

There really is a cascading market failure that is going to have to be addressed as we work through what the future of disability support is going to look like.

To quote Bruce from last weeks forum…. ‘The planning process is broken. It is traumatising’ and ‘The focus needs to be not just on the child but on the family.’

Only time will tell if the next steps forward bring relief and a healthier, better functioning system of supports for our kids and families. 

I’ll be keeping you informed along the journey and breaking it all down into digestible easy to understand practical content with a focus on kids and their parents / carers, so if you haven’t already, subscribe below to receive updates straight into your inbox.

X Anna