Carer Recognition Bill 2022 (No 33)

Thursday 23 March 2023

[11.56 a.m.]

Ms ARMITAGE (Launceston) - I rise to make a contribution on this bill, which emphasises that we as lawmakers have the capacity and the will to create a system where informal carers are recognised and have adequate support for a job that so often sits under the radar.  Anything which helps to give carers in informal caring arrangements a voice, is a positive step.  As we move forward, putting in place a structure that provides more practical assistance to carers and those they care for should be at the forefront of our minds. 

Every day, the work of carers contributes significantly to the care of vulnerable people who have no other option but to rely on the love and the support of those who look after them.  As the Leader has mentioned, the person can find themselves in the care of another for many, or any number of reasons:  disability, mental ill-health, drug or alcohol issues, dementia, or any number of health conditions. 

I am sure we all have stories of carers who we know and I can remember one lady in my electorate whose husband had motor neurone disease, and he could simply move one finger.  All he could move was one finger.  She said that was such a joy, because he could change the television channel.  What she went through every day, and just the fact that he could move his finger, to her, was amazing.  It gave her the slightest bit of freedom.  For her, her other time was just being able to get out for a day when someone came in to look after him.  He did not actually go into respite; I think it was just too difficult.  But when someone came in and she said 'I just go and do the shopping', has her hair done, just to have one day to be able to get out.  I think we sometimes forget that for people who are in these situations, that it is every day.

I can speak about my own mother.  My step-father had Parkinson's disease and dementia.  Mum felt the same.  She hated leaving him.  When he finally - he did go into respite a couple of times, which gave her much-needed breaks.  Sometimes you worry about the carers because something could happen to them as they are under such stress.  Mum used to worry, 'what happens if something happens to me?' she would say.  'What is going to happen to Ken?'. 

When he finally went into Aldersgate - which was permanent care and it needed to be secure care, because sometimes he would get out, and did not know where he was, and he was thinking he was going home - she felt that she was letting him down and deserting him.  That is really sad too.  Many times, they feel, I am doing the wrong thing; I am deserting him by putting him into a home.  It is very sad that people feel that, because in my mum's case, she simply could not cope much anymore, and for his own safety.  When she would go to the supermarket, she would actually have to lock the doors and be worried that he was actually okay inside the house.  If she did not lock the doors, he would wander off thinking he was going somewhere.   I think there are many stories that we can all relate from our own experiences, but also from our constituents who come in, and it is all very difficult. 

For some time, we have also been aware of the issues being faced by kinship carers, who take on the role raising grandchildren or perhaps other relatives.  I had a meeting with kinship carers, or kin carers, a group of them, only last week, about 20 or 30 people, telling me stories about the situations that they were in.  One lady, probably in her mid-70s, had to have two children from her daughter who was overtaken by drugs, one child she got at 14 days old, who is now 22, and the other child she got at seven days old.  I think that child is now in primary school and that has just been ongoing for so long and the difficulties that the carers have, particularly with resources.  They were telling me how difficult it is as informal carers.  I was led to understand that formal carers of the children come under the department, but they did not want to go as formal carers, because then the department is in charge of their relatives and their children.  As informal carers, even to go to the hospital, they had no say over the child.  They could not tell them anything and no-one would tell them anything, even though they were the primary carer for the child.  I am sure there are so many things that we still have to do, but this bill is a start.

The impact that this has on the lives of carers is significant.  I want to note the experience of one such couple who have taken on the role of looking after an infant grandchild.  They state:

Our plans for retirement changed immediately.  The long-awaited grey nomad leisurely tour of Australia and other plans were set aside while we struggled with formula, baby food, nappies, daily bathing, walks in the stroller, trips to the park, playdates -

Ms Forrest - Lack of sleep.  Just ask the member for Elwick.

Ms ARMITAGE - Absolutely, lack of sleep.

Reading stories and stimulating a lively 11-month old.  Entering our sixties, we were finding our days filled with activities for the child and either falling asleep in front of the TV or falling into bed, exhausted.  The life we had known changed dramatically, too old to form firm friendships with the parents of other toddlers and finding our social lives very restricted.

Over the years, we sadly watched most of our friendships fade away, along with the activities we used to enjoy in their company.  We spent 32 years, our entire married life, as grandparents, raising children who would otherwise have been in state care and most of that time received no recognition or assistance.  Now in our mid-70s, we have given up the idea of ever being grey nomads and given up other plans for retirement.  You might ask whether we would do it all again and the answer is a resounding 'yes'.  It could never have been any other way.

This type of experience says so much about the type of work our carers do and the attitude they have towards it.  We all understand that not all carer relationships are quite like this and can carry with them a great deal of emotional, mental and financial weight which might not always feel so rewarding.  Creating a system which treats carers with more dignity, recognising their rights and contributions to our community, and providing them with as much support as possible, starts with listening to them.

I know that this bill has created the Carer Issues Reference Group and it interacts with a number of bodies and organisations to understand what problems need solving.  It also obliges Tasmanian government agencies to report annually against a new charter and enacts a Carer Action Plan.  This is extremely welcome, but I believe there is still much more work to do.  We are the last state to enact a carer recognition bill.  What will come next is taking the more practical steps of providing tangible assistance to our carers and making change for them and those they care for.

I support this bill entirely.  I believe there is no end to the positive contributions our carers make to our community, and have done so for decades.  Now that we have a Carer Recognition Bill, it will be incumbent upon us to enact change and provide more proactive support for them for the absolutely vital work they do for some of the most vulnerable people in our community.

To our carers, the parents, the grandparents, the husbands, wives, siblings, children, aunts, uncles, cousins, neighbours and friends of vulnerable people who are being cared for, I say thank you.  I want to see your work not just recognised, but more formally supported as we move forward.  We all have a role in caring for vulnerable people in our community, but for the people who are taking on these carer roles at the coalface, I hope this heralds a brighter future for you and those you care for.