NDIS: is the fairytale real, an explanation of the NDIS from a parent's perspective

Now to be honest in the interest of disclosure I need to admit that I am skeptical, I am not sure I have any faith that this Insurance scheme might be the answer to the funding issues we experience. Let me discuss how it feels to be denied, to be told sorry your son doesn't fit our criteria. No we can't register your son. No we can't help you, no no no. Hearing that word over and over again. While carrying a burden in your heart to fight for your child, know that they are suffering and in a sense you are helpless to relieve it. To feel that you are waiting for a downpour of rain, a thunderstorm and all you get is a sun shower. Up until now I have had to fight for every small part of therapy and funding that we get and to be honest it's not a lot. I know there are a lot of other parents in the same position, desperate, exhausted and dry. I know this story is echoed through many households in this country.

The challenge for me when thinking about the NDIS is to have an open heart and a open spirit, not to dismiss it before it has had a chance to show whether or not it will be of help to the thousands of households and families that are crying out for help. 

Where do we start, I started at a NDIS workshop held last weekend. I have provided a slide on this process for the visual people. This is the information that I was given about the application process (quoted text is in italics):

1. The person contacts the NDIS for assistance and can conduct their eligibility assessment. This can be done either via phone or through the citizen portal online from April 2013
2. If not eligible , they can still access tier 2 supports (please see N.B at the end of this process) 
3. If they are eligible, they have a planning and assessment conversation with someone from the National Disability Insurance Agency. Eligibility is confirmed, the person can explain their goals and context, and they can have a assessment of their support needs. This process is done a strengths basis, not a weakness basis. The present system relies on Carers and Parents to paint the bleakest picture possible to be even thought of being eligible for funding. 
4. Once assessed, the person chooses the supports needed to meet their goals and discusses how they will manage their plan.
5. The person then manages and implements their plan, monitors outcomes and asks for a review if anything changes. 

N.B Now to explain this further there are three tiers of support through the NDIS, the first tier is mainly about awareness, the second tier which provides information for those with a disability and their family and carers. Providing general information about the most effective care and support options within generic and community support groups and services. 

Tier 3, which targets 400,000 people who need specialised supports. Such as specific supports and facilities in the community, according to an agreed plan and resource allocation for each person.  Tier 3 is where it's really going to happen for most people for example for those who need their child/adult in residential care or need round the clock medical care, or for someone who has a significant physical disability. 

Please click on the above graphic for the original article this graphic was taken from

The statistical side At this point I need to bring up my first big issue with the NDIS, in my research (and hubby helped) we researched the Bureau of Statistics on how many Australians are living with a disability. 

"Just under one in five Australians (18.5% or 4.0 million persons) reported having a disability in 2009. A further 21% had a long-term health condition that did not restrict their everyday activities. The remaining 60% of the Australian population had neither a disability nor a long term health condition. Of those with a disability, 87% had a specific limitation or restriction; that is, an impairment restricting their ability to perform communication, mobility or self-care activities, or a restriction associated with schooling or employment." National Bureau of Statistics

Not sure if you are as good at maths as me:) out of all the people that are needing services the funding support which is the biggest issue us carers and people with disability have. The government are catering for only 410,000 needing funding support. There are two likely outcomes and assumptions one can make either the government will go over budget or that the criteria is likely to be too tight and a lot of people will miss out on assistance.  Given that the statistics tell us that over 4 million have a disability the funding that the NDIS will provide represents 9.7% of the population who have a disability. 

In reference to early intervention funding for example on my estimates (that is all I can give you) is that 13% of all children with a disability aged 0-14 have autism which is around 22,180 if you divide that in half and assume that these may be in the age of 0-6 needing early intervention, that is roughly 11,050 that have autism and may need early intervention funding. So in accordance with the statistics from the ABS this is in line with 1 in 8 statistic, so roughly 10,000 of the 80,000 figure for early intervention could be for Autism related disorders. The complex issue remains is that these figures are known to not truly reflect the rate and statistics of those with autism. "Recently, the Minister for Health in Australia stated: “There is no national data on the diagnostic profiles of people with autistic disorder and/or Asperger’s syndrome and/or pervasive developmental disorders.” (Campbell 2003, page 16680) and “the Government does not plan to establish central registers for autism, Asperger's syndrome, or pervasive developmental disorders. The provision of health and disability services for people with these disorders lies with State and Territory jurisdictions as is the responsibility for ensuring sufficient attention is made available from treating clinicians.” (Campbell 2004, page 19851)" Taken from Autism/ASD Diagnosis rates in Australia by Bob Buckley Evidence suggests that with the advances in diagnosis that this figure could be on the rise and continue to multiply. 

In conclusion let's consider the facts the government has worked together to pass this bill recognising the lack of funding for this generation of disabled people and for those gone before us. Secondly they are at least making the decision to do something about it. My greatest fear however is that it won't be enough. I fear children just like mine will continue not to receive help because they are not disabled enough or don't fit a neat criteria box. However I am so overjoyed for the families living with a disability of someone who in the past has not received enough assistance and will now qualify for some real assistance in their home. They may able to access resources they never could be, this is a good thing. For any parent real funding that will help their child achieve their goals and meet their needs is a bit of a fairy tale one that we might read about, but may never become a reality. But... do we stop believing no! Like any fairy tale the happy ending is always preceded by a struggle, hard times and a villain (whoever you interpret that to be), we all hope that we might get the happy ending we are striving for!