I’ve wanted to write this post for some time now. Actually, this is going to be the first in a series of posts about the National Disability Insurance Scheme (NDIS) as there are so many aspects to it that need to be explained and explored. In this first post I’ll aim to provide an overview of how it works and then go into more detail as I describe each step of the application, planning, goal setting, review and change processes in future posts.
We are lucky enough to be in one of the trial sites for the NDIS, one of the most anticipated schemes ever to be delivered to people with a disability and their families. I know my experiences will be of interest to many families waiting for the roll-out of the scheme in their areas and I hope this series of posts will assist those still waiting to be a part of the scheme.
It’s important to note that the processes and procedures are continually evolving and changing, so this information could eventually become outdated and superseded. My aim is to regularly review the information I share here but you need to be aware that it’s based on MY experience in the system and may not mirror the experiences of others. Now that we have gone through a whole yearly cycle in the scheme I feel it is timely to share some of our learnings and experiences from that initial period to hopefully help others yet to move to the NDIS.
First things first – the NDIS is an insurance scheme for those who need to access a greater level of care or assistance due to disability. The idea is that people with a disability and their families will have greater control over their ability to access the support required for them to lead more independent and comfortable lives.
Since it is a completely new way of delivering services, the NDIS is being launched gradually across Australia, starting with 4 trial sites, one of which is where I live, in Newcastle NSW. We were among the first in Australia to move into the new system and, not surprisingly, moving across has not been without its hurdles.
First, there’s been the multiple changes in name that has been quite confusing to keep up with. The scheme itself is known as the NDIS. The agency responsible for administering the scheme was first called DisabilityCare Australia under the former government. When the current government took office in late 2013 they changed the agency’s name to the National Disability Insurance Agency (NDIA) which has caused confusion due to the similarity of the name of the scheme and of the agency administering the scheme. Since then that name has stuck, however the NDIA occasionally use stationery from one of their earlier iterations, just to keep you on your toes…
Second, there has been the haphazard communication which at times has left me puzzled at what I should be doing. For instance, the first letter I received from the NDIA looked like it was merely a letter confirming our acceptance into the scheme. It was not clear that I needed to provide further information – this only became apparent when I received a call from the agency chasing up the information required. A little more contextual information (i.e. a guide to the overall process) would definitely help in this area but in the meantime ensure you read every piece of correspondence very carefully to identify any action you may need to take to progress your application.
Third, there has been inconsistency in advice from service providers when moving into the scheme. By signing up for the NDIS you are moving into a user-pay system where funding is allocated from the NDIA to pay for services or resources accessed through your provider. For instance, we entered the NDIS via Vision Australia (VA). Prior to moving into the scheme, we were only ever required to pay for equipment we purchased from VA – all our consultations and assessments were ‘free’ (services were provided as part of government funding applied for by VA on my son’s behalf).
In the new world, people in the NDIS sign off for every consultation and assessment undertaken and this cost is taken from your funding. So, for us, there is now a cost when we deal with VA, which they claim through our NDIS funding. You need to be aware of how much each service costs so you can keep tabs on your spending and of the balance left of your funding. At the moment, as people are still transitioning over, providers are having to work in two environments, depending on whether clients have moved to the NDIS or not. That can obviously cause some confusion for participants, particularly in the early stages when you have only just moved over. This is not an insurmountable problem but it is something to keep in mind when you first come across.
While there are issues with the roll-out, it’s good to remember that the scheme is still in a trial stage and problems are being ironed out as the roll-out progresses. None of these are major blockers to accessing the many benefits of the scheme. And, in my opinion, the benefits are many.
Prior to the NDIS, my son was not eligible for much support at all. We spent thousands of dollars a year to pay for occupational therapy and speech pathology sessions. It didn’t take long for us to use up all our subsidised Medicare visits under the Helping Children With Autism (HCWA) package or those subsidised under the Mental Health Treatment and Chronic Disease Management plans. We also chose to see private specialists as the waiting lists in the public system were out of control and those costs quickly mounted up as well.
The NDIS now fully covers his speech pathology, occupational therapy and psychology visits. We have also been able to build in access to Vision Australia for adaptive technology assessments and access to Guide Dogs Australia for orientation and mobility sessions. Normal medical costs are still something we need to meet (visits to the GP, specialists such as an ophthalmologist or dermatologist, etc.) but it is wonderful to not have the stress of having to meet all his therapy costs as well.
Prior to the NDIS, there were never any holistic service provided for ALL of my son’s conditions. It was so hard to balance the contrary needs of his albinism and autism diagnoses. We would end up concentrating on the condition that was causing the most anguish until we needed to switch to concentrating on the other when it got out of control. Due to the complexities of federal and state disability funding, we would have to discuss his needs with the therapist to see whether they were autism or vision related and then work out if it could be funded under their particular funding (e.g. his vision issues couldn’t really be funded under the HCWA funding). I always felt we were missing the mark under this system and that we were slaves to funding bureaucracy.
The NDIS now fully covers all of his diagnoses and each provider is free to do what they feel is necessary to meet his individual needs, regardless of whether the issue is vision or autism related. This again has taken a huge weight off our shoulders. It is now all about my son and how best to help him rather than on what caused his issues and whether that’s ‘covered’ under the provider’s funding arrangement. This might not seem like a big deal to you but it is huge to us and I know it will help other families dealing with more than one disability/condition.
Case Worker Benefit
Prior to the NDIS we didn’t have a case worker or a planner or anyone who could look out for our son. He threatened to fall through the cracks as he does not fit the traditional boxes – he is not intellectually impaired and not really physically impaired (apart from his vision issues) so he did not qualify for a federal or state government case worker. We felt all alone and powerless trying to navigate the minefield of disability organisations without someone to help guide us through it.
The NDIS now provides us with a planning officer to assist in setting out our son’s goals, objectives and plans for the year. We also have access to a support officer who can assist us in between planning meetings to make sure funding is re-distributed as needed and to provide information as required on activities and organisations that could further assist him. After more than a year in the system we haven’t had to deal directly with either officer on too many occasions but it’s a relief just to know they are there. I know answers and assistance are just an email or phone call away and that is a real weight off my shoulders.
These are just some of the main benefits I have found in moving across to the NDIS. There are others but they will be covered in future posts in this series. I hope this overview has been useful but don’t hesitate to leave me a question in the comments and I will do my best to provide an answer.
Do you have any experience with the NDIS/NDIA? What are you looking to gain from it once it’s rolled-out in your area?
Would you like more support as a special needs parent?
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This is interesting to read – we’ve been fighting for a diagnosis for my husband for about 4 years now. Have had wrong ones along the way and may only have just started scratching the surface of what it might be. The holistic aspect sounds helpful in that it could support him in ways that the chronic disease management plans don’t. Does the NDIS cover the undiagnosed?
That has been our biggest challenge – for example last year when I was only working part time I was on Centrelink benefits and so was my husband. But while his doctor and job services caseworker told him he shouldn’t be working, Centrelink wouldn’t let him not look for work because there was no diagnosis. Even a letter from the doctor listing his extensive symptoms and how they impact greatly on his day to day life didn’t count, because they wanted a name for what’s wrong. I must say, on the bad days, it’s easy to get jealous of people who actually know what’s wrong with them.
It is so great to hear that this hard-fought initiative is finally in place and is making a positive change to people’s lives.
Finally some changes for the good. My daughter has learning issues and epilepsy and we had our fight a couple of years ago. After a few hiccups we have been acknowledged but I now think it is only a matter of time before that changes again. It is very exhausting really.
Living in England we are so lucky to have access to the National Health Service paid for through our National Insurance contributions which are automatically deducted at source. Everyone who works pays into this by law. This also means that people on low incomes or those who are out of work for whatever reason can still access the same care. We often grumble about waiting lists and staff shortages but I do truly believe that we are one of the most fortunate countries in the world to have this. We may sometimes have to push for the level of care we require or wait for help to become available but we never have the added stress of not knowing if we can afford it. This looks like a fantastic initiative.
Wow. Great that this is rolling out. I don’t have an experience with it other than through hearing about it at work. It’s definitely something we all need to get our head around. Cheers for linking up at The Lounge.
Sounds great in theory Kirsty, I really home it all goes smoothly and works out for you and your family. I had not heard of it but as I avoid pretty much anything to do with the real world I tend to miss a fair bit!! I only just found out about the preschool fee reduction for kids going to school the following year being cancelled!! Maybe I should pay more attention!!
Very impressed with how well you’ve explained its impact for you but I can see how much you’ve had to navigate the system to try to get your head around it. I’m wondering why you could not be an advocate for those who may be needing extra assistance just to “get help”.. You seem ideally placed! Denyse