The NDIS and our warped sense of priorities

iansand says:

08:38am | 02/09/12

“and suggests some people are more interested in partisan politics than meaningful policy.”

Gosh.  What a revelation!!  Who would have thought this?

Charles says:

09:08am | 02/09/12

I agree with the premise of your article, although I think that some of the things that we can use to find this programme should come from the insane green schemes that have proliferated around the country, and which do not add anything to either the economy or the environment.

For example as Graham LLoyd pointed out in his article in the Australian yesterday, it has been shown that wind farms do not provide clean energy and minimise CO2 emissions, and therefore we could save $ billions right there which could be devoted to the NDIS.

In addition, all those rooftop PV systems which only force the cost of themselves onto all the other electricity users who don’t have them, they could be decommissioned immediately as well.

Likewise the $10 billion allocated for the Greens Clean Development Fund, as it is unlikely it will go on to anything other than unproductive hare-brained schemes that only serve to preen the ego’s of ideological zealots like Bib Brown, Christine Milne and Sarah Hanson-Young, this could also be more usefully applied.

In fact, if you and your fellow journalists were to look harder at this area to see what is actually being provided, you will see that there is no positive outcome either socially, environmentally or economically and it is in reality a triple bottom line loser, to use public service parlance and could be gotten rid of without any ripple or discomfort for society in general anywhere.

Gregg says:

09:21am | 02/09/12

I read with much interest your previous article David and did respond though for whatever reason it did not make it to a posting, perhaps it being perceived to have too much by way of criticism though I had thought it constructive.
I’ll attempt to be constructive again with my thoughts.

There is no doubting that there are people who have a rough road to travel because of disabilities with family members, it may not always just being parents with children and personally I have been fortunate in life in dealing with issues that I would not in any way class as problems.

You do however raise some core issues with your last two words in:
” The fact that the federal Labor government or now-defunct Labor governments may have stuffed up aspects of the economy is not of itself a reason to hold up a flat hand to the NDIS, and suggests some people are more interested in partisan politics than meaningful policy. “

We certainly have to have a meaningful policy and the core of that could in fact be What is to be included? and What is not ?, no easy task that nor establishing a creditable means of making determinations.
Just one example I can think of is that rather than it be a child or even an adult with disabilities and parents who have that to deal with, what of the family where one of the parents is struck down and then the load falls on the other parent and children.

” Beyond that though, and to return to my original point, the issue rests with the voters and what they regard as important, and what they regard as a problem. “
Though I have little faith with our politicians or bureaucrats orchestrating a simple and equitable approach, I do wonder how it could be that the issue is left to voters other than it being an election issue.

” As one example, right now in Australia we have a politically paranoid promise from the Federal Government that all schools, public and private, will receive the same level of funding or more funding under the Gonski report. There is absolutely no way such a promise can be made on the basis of need. “

It is interesting that you raise education as an example for with the NDIS there are also factors such as whether it’ll be means tested and then you also have the scenarios of different levels of coping, be it because of the degree of disability or just the personal and relations make-up of the family that could affect coping.
And then there could be the degrees of servicing and using wheel chairs as an example, no doubt there are many different models and manufacturers continually upgrading.
How we might ask are decisions to be made?

Hopefully, it could be trials that may provide some answers but I’ll not hold my breath.
Finally, it is making it work that is likely another aspect for politics and budgetting is just an initial step and if we’re talking of policies that take some of the load of carers, that in a lot of cases will mean other people being needed and that then raises another question of where do they come from?

A lot of unanswered aspects that hopefully will not be such problems they are a huge obstacle.

NDIS Now says:

09:40am | 02/09/12

Coincidentally, just prior to reading this article, I was conversing  with my young professional child  (who rang to wish her Dad a happy Father’s Day) and about the looming possibility of she and her (also professional ) partner  purchasing their first home together.  Children will hopefully follow not long after. They both earn decent money but the only way they have been able to stump up the 20% deposit required for the property they are interested in has been by being very frugal, living in a rented shoebox and on a strict budget. No 90 inch plasma for them.  They are also taking into account  before committing to a mortgage a projected drop in  combined income when the kids arrive. However, I am by no means complaining on their behalf. This is the kind of thing one must do in order to get ahead in life, if you don’t happen to be blessed with loaded parents. They are earning their own future security, and hopefully, happiness. They are however, very cognisant that they are in a fortunate position in comparison to those on lesser incomes.

However, I not long after received a phone call from a close friend with a severely disabled adult child. Her life is the same as most others in her situation as you describe, Penbo. The constant care needs and worry  re the future of their child place an enormous  mental, physical and financial strain on the family, but they cope because they must, not without the cracks appearing from time to time, when the help of friends and as many agencies as they can access, is invaluable. 

It occurs to me that my daughter’s rosy outlook can be  turned on it’s head and her life resemble my friend’s if she was to become the (albeit loving) parent of a disabled child. I most fervently hope that those who so obviously need the NDIS to assist them achieve that goal and will be doing all I can to support it, both for those in need now and those who will need it in the future.

Anjuli says:

10:39am | 02/09/12

Until this debate surfaced and being a grand mother of an Autistic 5 year old, I did not know   the people with disabilities were not funded as they should be . We need this NDIS now not later, there must be lots of kids falling through the education cracks let alone how many more adults living in fear for when they die ,how are their offspring going to be cared for.It is called National Disability Scheme not state Julia Gillard wants to put the money where her mouth is and get on with it, stop giving money to countries who keep thumbing their noses at Australia.

FundingResponsibility says:

10:40am | 02/09/12

“Most of us think we have problems. In reality we don’t have any problems at all. If you think you have got problems there is a very special and largely unrepresented group of Australians you should talk to, after which you will skulk off with your tail between your legs, feeling somewhat shamefaced at the imagined hardships in your life.”

You know, I really get tired of this argument that because someone else, somewhere else, is somehow or another worse off than me, that I therefore don’t have any problems and that I should effectively “go jump”. The minute you try and weigh one challenge up against another and then “point-score”, you lose the point entirely.

Take Gonski review. Are you saying the Government should drop that until the NDIS is funded? What about the NBN? We could cancel that now and save some $30 Billion, money which could go into the NDIS and Gonski quite easily. But then, why build bridges when there are homeless people? Why spend hundreds of millions on refugees when we can’t even look after our own Aboriginals who live in squalor - even in comparison to the detention centres?

There will always be some other area, some other person, some other situation where someone is worse off. But to say that because of that, it therefore means you don’t have any problems at all, is as heartless as not funding an NDIS in the first place.

Of course we should fund an NDIS - but let’s look at funding it responsibly, rather than simply making more people miss out.

Matt says:

10:42am | 02/09/12

Will thepunch.com.au contribute funding as well as column inches?

In recent weeks, several of your contributors made some good points about certain Australian billionaires manipulating policy debates. I am extremely disappointed in your actions here. And giving it a slogan - ‘everyaustraliancounts’ - just reeks of cynicism and hypocrisy.

Kaz says:

10:51am | 02/09/12

I guess I hope the NDIS, should it ever get up, is for all people with disabilities irrespective of their age. I am the eldest child and daughter of a woman in her early 60’s. She’s just been diagnosed with a debilitating, incurable and always fatal neurological disease. You may or may not have heard of it, and it doesn’t matter what it is.

Her prospects are grim…I would hope that all people disabled can receive appropriate support, whether they are a child or an adult who is not yet eligible for aged care intervention. Sure, kids are important…but just try watching your father broken down by the gruelling care his wife now requires because they don’t qualify for help. She’s not young or old enough.

Her disease is cruel enough…but to deny her help because of her age is profoundly wrong, and something we can control (unlike her disease).

PeterMax says:

12:22pm | 02/09/12

The NDIS scheme is very important. We have a lovely 20 year old grand-son with autism and a son-in-law who is blind.

Unfortunately and typically Julia Gillard is using her NDIS proposals as a vote buying exercise and to also to try to create damage - now and in the future - to Tony Abbott and the Coalition.  Ms. Gillard is being mean and tricky as she knows she does not have the funds to implement the scheme and the Liberal and Labor States do not have funding available either.  The Liberal States are struggling under massive debt incurred by the previous Labor Governments and the Labor States are too as they have squandered $billions. Tasmania already needs much Commonwealth Government help.  SA has an unprecedented $13billion of Government debt from foolish and squandering spending by SA Labor, which is very much worse than the John Bannon Labor State Bank disaster debt of about $3billion, which then crippled SA. 

Gillard Labor already have quickly built up an unprecedented Government debt of $250 billion or so which I do not think includes the foolish, inefficient and extravagant $50billion or so NBN and perhaps other schemes.  The time to introduce the NDIS and all the other $10billion in total or so schemes Ms. Gillard is proposing now for the never, never, was before she squandered $billions on pink batts, school halls and squandered $billions because Labor scrapped the successful Pacific solution.  Do not treat us as silly PM . Answer questions truthfully. Where is money coming from ?  Are you, Ms. Gillard,  just trying to be again divisive and tricky which will leave many people to become disillusioned with more of your false promises.

Tropical says:

01:29pm | 02/09/12

Will news.com.au also be campaingning to tell us where the hell the money is going to come from?
I am not against the NDIS but as your beloved Labor has emptied the coffers and then some we cannot afford it until the nations finances are under control.
When the scheme was announced Gillard laid it on the states, and walked away - like she always does.

pa_kelvin says:

02:11pm | 02/09/12

Stop sending billions overseas in’ Humanitarian’ aid.  Why should we be looking after the rest the World when we have worries of our own??? Use the money spent on overseas aid to support the NDIS….....might not cover the whole scheme, but its a start…....

Dave says:

04:51pm | 02/09/12

Our Daughters wheelchair cost $14,000- she weighs 30Kg and we lift her in and out of a car. She is unable to talk, walk, stand up, eat unaided and suffers from seizures. Our last holiday i cant remember- and do I care- not really, we have learnt a lot from her, meet people at hospitals (yes we are there a few times a week) who are inspirational. The professional services supplied are fantastic, but we have a 3-4 year wait to see a geneticist, and the same for her neurologist. Some of the system works- but more is breaking and NDIS will at least allow us to try to fix up some of the problems. Having said that, we are in Queensland so there is little chance of a good outcome as all we have seen in the last few months is further deteriation of services.

Diogenes says:

05:59pm | 02/09/12

Our 11.5 yo son passed away exactly 12 years ago today. He had a very rare genetic disorder that was not picked up until he was a year old. Despite being grief stricken as you can imagine, it was relief as well, as we were already starting to stress about what would happen when he required more care (had he survivied his last hospitalisation he would have needed oxygen 24hrs a day, as well as continual monitoring to ensure he was not choking on his own saliva), and post school options.

I was lucky that I managed to earn 2-3 times the average weekly wage so that SWMBO could stay home & care for him.

Funding was always an issue, and because of my wage I was not able to access much in the way of funding, and had to pay for home improvements to make the house disability friendly, fit out a wheelchair vehicle, as well as pay for many aids. Luckily we had some funding for respite.

Whilst funding was tight, several of his classmates have turned 18 and left school, and the parents have found the situation positively dire as their children transition out of kids hospitals in adult hospitals where the staffing ratios are lower, and try to obtain funding to allow their kids to work.

Andrew says:

07:27pm | 02/09/12

David. I am in favour of the NDIS proposal. But I am not in favour of the Gillard Government being in charge of its implementation. As a father of a 15 year old disabled beautiful little girl, I will not place her future in the hands of such incompetence. My daughters’ life is far too important for that. There are too many complexities in trying to link relationships between, local, State and Federal departments to ensure that the disabled are cared for. My wife and I appeared on A Current Affair together with about 30 other parents, approximately 5 years ago, looking at trying to get NSW, QLD and Vic State governments to do something. Nothing has changed. Yes, the idea of a Federally run programme makes sense, but knowing the extent of what needs to be co-ordinated on a daily level, will take more than what Gillard has in mind. Her (and her ministers) have shown themselves to be fools on too many occasions for me to place my daughter’s life in their hands. In addition to having a disabled child, my wife has undergone additional caring responsibilities having to look after me recovering from major surgery, and our son is doing year 12 this year. I have not worked since April and am now on newstart. Recent conversations with them made me partially amused but also it confirmed total misunderstanding (or lack of understanding) at a Federal level. I was talking about money and they said the government looked at “hardship” and determined money allocation that way. I said, “come and live with a disabled child and undergo major surgery and I will tell you what hardship is. Money is not the issue. Helping us help our children is…yes it costs money to do these things, but don’t you dare put a price on the life of someone who can’t fend for themselves. We fight every day for the basic rights of our daughter, that everyone else takes for granted. We also try to live our own lives, as dramatically changed as they are. Bring your camera crew into our house and watch our girl day to day and see why so many parents give up, why so many parents divorce, why so many parents are own their own medication, and why so many families are distraught. They are at the point where they will say yes to any form of NDIS simply because they want “something” - anything is better than the current nothing. But you need to find those of us who can still hold their head up and make sure that what is put in place, is not a political gesture, but takes into consideration all aspects of those disabled people who need help. Cost cannot be counted when it comes to these people who don’t know how to help themselves. David, help me to help them. Most places don’t like parents like my wife and I as we ask the big questions, hold people accountable for their actions, and expect people to hold to their word. We want the best for our daughter, and for others who are in the same position. But we don’t get invited into these issues, because we make sure the right thing is done, no matter the cost. I don’t want a half hearted NDIS program. All the disabled deserve the chance for a real life.