As COTA Australia’s response says, “regrettably” Counsel Assisting’s final submission results
“in a tipping of the balance of power further away from older adults. The concept of self-determination is only referenced a few times, and whilst ‘determining’ is often used in the recommendations, it is never older adults who are doing the determining or seen as full partners in determining. Provider paternalism, a major problem with the current system, will be reinforced.“
There are two fallacious and, yes, paternalistic assumptions at the heart of Counsel Assisting’s final submission: first, that all older people receiving government support are frail and vulnerable and need to be protected. Second, that older people need approved home aged care providers and professionals to determine their best interests and manage their services.
The concept of older adults being able to “self-manage” their home care package has been all but whisked away in this proposal and control given back to aged care providers. The final submission says “rather than encouraging ‘self-management’ by a person of their own home care, the program should enable ‘shared management’, ensuring the lead provider always retains responsibility for ensuring the person’s needs are being met and that quality and safe care is provided in accordance with the person’s plan or package.
It’s an extraordinary rejection of our right to self-determination that flies in the face of all the magnificent statements they make up front about the centrality of the older person and their human rights.
Most of us have had responsible roles in life: managing families and households; running businesses big or small; managing people and teams; wrangling classrooms; delivering products and services; negotiating home improvements; planning complex travel; managing our bills and superannuation etc etc. We want to continue being in control of our lives for as long as possible.
Should we find ourselves impaired by an illness or disability in later life, we are entitled to some government-funded assistance at home or – if needed – in an aged care home. Right now, if we are assessed as being eligible for government-funded support at home, we have the option of managing that budget ourselves – or with the help of family or a friend if needed – and choosing the services and support workers that best meet our needs as we continue along with life.
Some of those needs will probably require skilled healthcare professionals. Other needs, like getting to appointments, doing the shopping, cooking a favourite meal at home might be better served by someone we have a good connection with instead of a stranger sent by a provider. We want to choose a worker who understands our interests, speaks our language, knows about our community and can fit in with our routine.
Unfortunately, few people are informed by their home-care package provider that they are entitled to this level of choice and control. Most people must work around the options on offer from the provider, with staff available according to their rosters and an all-too-frequent attitude of “don’t worry, we know what’s best for you, dear”.
I have studied self-management programs* for 20 years in aged care and disability and I know there are many people right now who want to self-manage their government allocated funds to have real choice and flexibility that is not possible with agency managed services. While these people all live with some form of impairment that has made them eligible for a home care package, this does NOT make them incapable of knowing their needs and interests and being able to make informed choices. And people with diminished capacity can benefit from personalised supports organised by interested family or friends.
The number of us who want to be in control of who comes into our homes to interact with us in our personal lives, sometimes quite intimately, and when and how – will only grow.
In my written submissions and testimony to the Royal Commission, I gave evidence (clearly ignored) that self-management leads to better quality of life for many people, with some living at home for much longer because they have personalised services and supports. Safeguards can be put in place to ensure the person’s wellbeing, accountability for public funds, and the protection of workers’ rights.
We must not sit by and allow our right to self-determine our lives, at any age, be eroded. Self-management must be included as an option available to those who want it, with all the checks and balances needed to ensure safety, accountability, and reasonable working conditions. For all our sakes, we must stand up for the rights of older adults and remain vigilant as we await the Royal Commission’s final report on 26 February 2021.
Carmel Laragy led the evaluation of COTA Australia’s self management trial of home care packages, funded by the Department of Health.