15 October 2009

Dear Minister,

It has been two weeks since I sent you my email (1 Oct 2009).

It is unfortunate that I have not been able to receive any response.

I am saddened by this silence.

As carers we are left to wonder who the champion of our elderly is and who is the person who is interested in the plight of those who care for our vulnerable citizens.

In my elderly mother's case she has suffered at both ends of her life cycle.  She came to Australia with my father and the children eager and enthusiastic to build a new life.  She undertook the menial jobs and the dirty jobs. 

She is now in the final phase of her life and I feel she is suffering needlessly.  The institutionalised system is understaffed, not enough training to deal with people with high care and especially how to deal with those suffering from the awful disease, Dementia.

My experience with the institutional system has let me wandering what are we as a community doing to assist those most vulnerable and most impacted by the ravages of age and those who are most fragile because of disease or impairment.  Dementia is the cruelest of all of these. 

I have attached the email that I sent to you recently.  I have edited it to remove spelling and grammatical errors and omissions.  It is my earnest hope that you will respond:

1 October 2009

Dear Minister Elliot,

I thank you for taking the time to read this email.

It has been one year since your award to me.

It has been one year since you indicated to me and my fellow colleagues at the award/meeting that we would be involved in "some developments and consultations" to do with aged care.

I wait in hope that what you intimated will still happen.

It has been a year since your staff promised to send photos of the award event.

This is still to happen.

Nonetheless life must go on.

I am intrigued however at the continued lack of consultation with caregivers in this sector. 

It has become apparent to me that breakthroughs by caregivers in this sector are overlooked.  Your Departments unwillingness to proactively engage with family caregivers in this sector is continuing to cause untold hurt and despair. 

Since I met with you last year there has been more than 2,500 emails phone calls from ordinary Australian citizens who take their caring roles seriously.  They tell me they are tired and exhausted.  They want to keep their family members out of the institutional system.  I have also received calls from our elderly citizens who do not want to go into institutional care and who want to stay in their own homes.  They do not want to be institutionalised. 

Most people given the option would like to be independent or "in control" for as long as possible.  Many family caregivers do not want the institutional approach imposed upon them. They care little for ‘case management’. 

Most people given the option of more hours of ‘direct support’ or 'case management' would opt for more direct hours of support.  Minister as a community we cannot continue to grow the infrastructure and spend money on the growth and development of institutional care with all of its ancillary costs, on costs, infrastructure costs and case management costs etc. 

As a civilised community we need to give people the option to remain in their own homes for as long as possible.  Please note that the most recent report from the "Productivity Commission" indicates that the cost of institutional care per person is between $150000 and $200000 per year.  Compare this to the EACH (Extended Aged Care at Home) Packages of about $43,000 per year.  It is unfortunate that even at this lower level there is waste as most of the EACH package money is swallowed up in Case Management and Administration costs.  In most cases less than 30% of the EACH package ends up as direct care hours. 

Minster, this apparent waste of valuable resources cannot be sustained.  People should not be told by Registered Providers that they cannot self manage their packages ort hat they cannot operate a "consumer directed model of Care".  The economic imperative will dictate that as a community we cannot continue with the high level of waste that is evident in the Aged Care Sector.  Minister, you have the power to direct.  You have the power to be proactive and above all you need to show leadership in this sector.  You need to think grass roots and how to engage with those at his level. 

Having said the above I have to admit that the system finally defeated my efforts to keep my mother in her own home.  She was prematurely institutionalised.

Minister, now that my mother is institutional care I am confronting new issues as a consequence of my reluctant engagement with the institutional system.

I now find that I need the support of independent advocates.  Please advise where I can locate independent advocates.  I find that I am floundering.  I feel disempowered because I am no longer in control and I am at the mercy of decision makers who are not close to the impact of their policy deliberations.  I feel threatened and intimidated if I dare ask questions.  I feel that I am putting my mother’s care at risk.

In the period my mother has been institutionalised she has been hospitalised 4 times.  Has suffered severe dehydration.  Has suffered falls and bruises and nobody knows how these have come about. My mother left the hospital system after a 35 day stay unable to walk independently.  She was put into transitional care with promises that she would receive intensive physiotherapy treatment.  My mother entered institutional care in December 2008.  My mother has not walked since October 2008.    She has lost more than 30 kilos in weight in the last year.

I am too afraid and frankly exhausted to challenge the institutions.  I thought your state office handling EACHD (Extended Aged Care at Home Dementia) packages was hard to deal with and impersonal.  They always quoted policy and guidelines. 

The institutional system has threatened me with ‘Guardianship’.  This really sent shivers down my spine.  The institutional system is not very welcoming.  We are often seen as intruders by the ‘professionals’.  As a point of fact I was told by one Geriatrician that even though I had medical power of attorney my wishes could be overridden by him.  I was shocked by this matter of fact comment by the Geriatrician. 

I have always believed that institutional care is not the best or even a good option. 

It was never a good option for my mother.  However hard I tried to remove her from the institutional system the harder it became.  I was promised physiotherapy by the hospital system and also in transitional care.  This never eventuated because the professional made a judgment that this ‘elderly person would not benefit from physiotherapy’.  I discovered that once you tangle with the system it breaks you.

I am saddened to say but I have thrown my hands up and now pray that my mother is taken by God. 

I would like to meet with you and give you first hand account of what the institutional care system does to our vulnerable elderly.  I will tell you what it does to the caregivers.

I will tell you how the profit motive in the aged care sector destroys community.

I will wait for your response on this matter.

The other reason for my email.

I have had my attention drawn to this "Draft Community Care Charter".

Minister can you enlighten me as to where one can obtain this draft of the aforementioned charter.

I would also like to ask respectfully who was involved in the development of the draft in question.

Who are the caregiver representatives?

Are we caregivers able to contact these representatives?

I would also like to know if I am allowed to know, who nominates these representatives and with whom do they liaise and consult?

Please advise of the schedule of community consultations with respect to the "Draft Community Care Charter".

I look forward to your earliest response.

Yours sincerely,
George Vassiliou