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Spotlight on MND


Inadequacies in the Aged Care System

Posted 14/06/2016 at 6:52:00AM by Phil Brady

I was diagnosed with Motor Neurone Disease (MND) over twenty years ago and count myself as one of 'the lucky ones' as the average life expectancy of MND is just two to three years after diagnosis. In my time I have observed the effects of this cruel disease, especially of those who have the fast progressing type of MND who live for only for a few months.

My observations are that the current assistance available lacks the timely support, both in service and equipment aids to meet the needs of this progressively fast disease – this especially applies to elderly MND sufferers. I know that without this support MND sufferers life expectancy and quality of life is diminished. It has been shown that readily available multi-discipline services improve life expectancy and quality of life.

Thanks to the initiative of the National Disability Insurance Scheme (NDIS) I believe that the needs of people suffering from MND will eventually be addressed. However, the NDIS only applies to persons below the pension age but the needs of persons suffering from MND who are aged 65 and over are supposed to be covered by the aged care system – this is not the case.

Typically, people living with MND have complex and individual care needs that rapidly escalate as the disease progresses. These needs cannot be met by current or traditional aged care systems. You can take it from me that people with MND have no time to waste; they need fast access to appropriate assistive technology, support and services to allow them to live better for longer.

I became aware of inadequacies in the aged care system from the outset after undergoing the Aged Care Assessment Team (ACAT) assessment.  In my case, I had to wait for an ACAT assessor to visit me and then it was not for some months after my assessment that I was approved to receive Level 2 Home Care. Many people with MND may not survive long enough to have, firstly to arrange for someone to have their ACAT assessment appointment made, then wait to be assessed, then wait for the approval and then finally find a service provider that supplies the care they need – the whole process is just too slow. 

In June 2015 I was assessed as requiring Level 4 care. This ACAT assessor advised that Level 4 Home Care packages are as scarce as hen's teeth and she advised to take the first Level 4 home Care package offered.  My wife then contacted all of the organisations that offered Level 4 care, but it took 11 months for a service provider to offer me a Level 4 Home Care package so we took it up straight away. 

Luckily for me, since I had been placed on a Home Care Package before 1st July 2014, I didn't have to fill out the 16-page Aged Care Fees Income Assessment form. This complex and onerous form is required if your ACAT Assessment recommends that you need aged care at any level, whether it is home or residential care. This form is used to assess the fees the client has to pay. The requirements of this form are very detailed. I'm an accountant and it would have taken me some time to gather all the supporting information and to complete this form and attach the relevant supporting documents.  How they expect an elderly traumatised person diagnosed with MND to complete the required form and present all the supporting documentation is beyond me. If completing this form is too onerous, it is suggested that professional assistance be obtained – this is an indication of complexity of the form and is bureaucracy gone mad. A simple listing of all assets and all income of both the applicant and partner should be sufficient information for the relevant authorities to determine the fees that have to be paid.
Another gap in the system is the provision of equipment. When I could no longer use my walking frame to move around the house, the Neringah occupational therapist made application to Enable to get me an electric wheelchair.  There was a delay of about two months before Enable could supply me with one. Luckily, MND NSW was able to lend me an electric wheelchair in the meantime. 

All this happened before Consumer Directed Care came in on 1st July 2015. The purpose of Consumer Directed Care is to provide funds so that the client can use these funds at his/her discretion to buy equipment and services that the client may require e.g. an electric wheelchair, bathroom modification, BIPAP machine, podiatrist, physio, additional care etc. An Aged Care package is funded from a government subsidy given to the services provider plus the fees as assessed the client has to pay. These funds are used to contribute to the service provider’s costs, to fund the client's care needs and contribute to the client's Consumer Directed Care fund. With the average life expectancy just two to three years after MND diagnosis, it leaves little time to build up Consumer Directed Care funds to meet the needs of an elderly MND sufferer. As for me, if I was faced with having to buy an electric wheelchair now and use my Consumer Directed Care funds to make this purchase, I would not have sufficient funds available to make this purchase. 

Compared to the NDIS, I regard an elderly MND sufferer having to rely on the aged care system as discriminatory. As far as I am aware the NDIS does not require a complex 16 page form to be competed to get funding – this is given in full where and when it is required by the NDIS client. This contrasts to the aged care system where Consumer Directed Care funds have to be accumulated to finance the purchase of equipment and services. All people living with MND need fast access to equipment to help them live better for longer. 

Phil Brady



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