Falling through the cracks: new report

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• 
  Janaki Ranmuthugala 17 January, 2012 at 12:06 pm

  Falling through the cracks: the hidden economic burden of chronic illness and disability on Australian households

  This is a relevant paper for Australia. The country has a long way to go before elected Governments of Australia begin to understand the meaning of the phrase ECONOMIC BURDEN OF CHRONIC ILLNESS AND DISABILITY ON HOUSEHOLDS. Unfortunately successive Ministers for Health in Australia skim the surface and take the easy way out. Now they have started discussions on the National Disability Insurance Scheme. This is a clear case of WHITE WASH. There are sufficient studies and data, to show proof of the Economic Burden of Chronic Illness and Disability on Australian Households. What is missing is the strength of character of successive Governments to put in place a well worded policy for helping out such families from getting into Economic Strife.

  In our family there is a clear case of a breadwinner being disabled with the Motor Neurone Disease (MND). As such, he has had to give up his job prematurely. The wife has had to bear the burden of doing a full time job, mainly to enable her to feed and educate her 2 little boys, who were 4 and 7 years old when the husband’s disease was diagnosed with MND. That was 5 years ago. The deterioration progressed steadily, till the wife could no longer look after the husband at home. Although medical literature indicates that MND patients succumb within 5-6 years, this person appears to be living longer, which means that expenditure keeps mounting.

  The wife has now extended the mortgage on her home mainly to get $400,000/- as a deposit for the nursing home and now she lives in a rented home paying $630/- per week. Attempts to find a suitable High Care public nursing home proved to be futile. Centrelink staff, were absolutely rude when she, as well as I, tried to ask them whether there is any chance of some help from Government. This was because the wife’s income was fairly good. But when one adds up the loss of the husband’s income and the extra cost involved for his disability care and medication, and the mounting cost of interest on loans, and the many problems that come with living in rented properties, there are no words to describe the situation.

  My husband and I are retired and aged. We help a little, but most of the time we see this family struggling to make ends meet, trying to get the 2 boys on their feet.

  I don’t think that there is any more need for collection of information in Australia, or any other part of the world. The hidden economic burden of chronic illness and disability on any household the World over is indeed common knowledge and common sense. All that is required is to have in place, a well qualified and resourceful staff member at Centrelink, whose knowledge is sufficient to access the situation and recommend payment where necessary. Instead, we have front line staff who, bark at persons who simply want to know whether there are any regulations in place, that would help reduce the burden on families, where a breadwinner is afflicted with illness which causes disability. If the appointing of resourseful staff is not the solution, then there is no point in fuelling in more funds into more studies, more meetings, more discussions, etc. etc. all of which are clearly a means of killing time till the next election.

  Can someone take this matter up and act quickly.

  Thanks.

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• 
  jenny leach 28 March, 2012 at 7:24 pm

  Well said…… I have spent the past 40 years attending meetings, group discussions and filling in many ‘what it’s like to have a disabled child’ surveys. Now ( at the ripe old age of almost 70), i have been granted some funding to buy respite for my 44 year old son with cerebral palsy, Sounds as though you need the same. I wish you all the best.

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