15661 – Margot Harker

Director on the board of an advocacy service

I have an acquired disability from a cerebral aneurysm 11 years ago which resulted in left side paralysis. At the time I was just under 65. Coming through the acute phase and then rehabilitation, I discovered that the NDIS (being rolled out across Australia at that time) was limited to people under 65. I was consigned to the Aged Care system, which wasn’t fit for purpose then, and is still inadequate for my needs now.

I was determined to live in my home independently, and have been assessed as suitable to do so. My cognitive powers are unaffected, and I can participate in cultural and social activities as well as contributing to formal action, consultations and projects shaping social and political change. I have an aged care Home Care Package (HCP) and access to Commonwealth Home Support funds, which together provide enough money for basic morning and evening personal care and meal preparation. Some equipment, including a powered wheelchair has been provided by the ACT Government.

But the value of the commonwealth aged care funding has been eroded, and my services including donestic assistance, have been cut, so the limitations on my participation in community, family and friendship activity have increased. Exclusion, isolation , loneliness, lack of stimulation are my daily lived e oerience. I live a much more narrow, tightly bound,existence, frustrated by barriers to participation, unable to use my creative and intellectual capacity..

I have the double whammy of being stereotyped as a useless drain on society because I’m in a wheelchair and I’m an ‘old lady’ with silver hair, loss of teeth (a corollary of the CVA plus cancer treatment), all the prevalent false notions that operate, and being female adds to this: I get a lot of mansplaining, ‘helpful’ blokes trying to drive the wheelchair for me, or telling me how to reverse or turn it. There’s occasional resentment at the fact I’m outspoken and boldly seek involvement in strategic planning and policy development. ‘Old ducks’ and ‘cripples’ don’t do that sort of thing, though this old duck has years of experience in the public sector tertiary education doing policy work, program development, research, professional writing and editing.

What all this means is that people like me have to navigate areas where policies and programs aren’t targeted or appropriate, there are gaps and inconsistencies, and suitable consultation processes haven’t yet been developed. The disability Royal Commission has flagged the importance of ‘intersectionality’. I’ve been told that my advocacy service has increasing numbers of clients with disabilities who are 65+ and therefore expected to have support services provided through aged care funding, which despite much tinkering over the last 10 years, just doesn’t work for us.

We need more advocates, with the specific mix of skills and knowledge to support us and promote the right kind of assistance. My work on the board of ADACAS has confirmed that the need for systemic advocacy is as great as the need for personal advocacy. Government agencies and ngos in the field (such as care providers) are floundering and struggje to bring themselves into line with contemporary best practice.. They’ve been bound by old fashioned attitudes snd ways of operating, pressured by reductions in staff, tighter budgets, and imperatives to get things done on a shoestring without any breathing space for creative thinking and planning.

Experienced advocates observe that organisations keep doing the same thing over and over, resulting in complaints and requests for advocacy which follow well beaten paths, when tweaking, adapting, or radically changing practices in the organisations we interact with, could prevent the negative situations from arising ain the first place.

The whole care sector must develop habits of effective communication – , up, down, sideways, consultative, formal, listening, hearing, and observing the lived experience of clients and our carers and supporters.