Page 1959 - Week 07 - Wednesday, 23 June 2021
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I note my parents are behind me, and while I cannot see them, they are definitely making me emotional. My mum also stated:
During the research I did in 1999-2000, carers stated across the country all they wanted was to be recognised in their role and to be respected. Many carers said the most important thing was Respect, Respect, Respect. Subsequent surveys and research continued to say the same thing. It’s unfortunate that 20 years later carers are still saying the same thing, and if you look at the concerns carers are raising, little appears to have changed. This bill is long overdue in the ACT. Something like this exists in every other jurisdiction. Hopefully, it will help to move the recognition of all carers and the care relationship they are integral to into a better place in our community.
My dad said, “It’s about time we had this bill to recognise all carers.”
Some could say my whole life has been an education in how important this bill is. But this bill is not just about me or my family; it is about the tens of thousands of people across Canberra who provide support to so many others every single day. Today, I would like to give voice to some of those people I spoke with and who have agreed for me to share their words. During the consultation period on the draft bill, one carer said to me:
I wish to make two points, chosen from the many issues I faced as a carer for my terminally ill wife, because I suspect they will not be widely made by other carers.
Issue 1: unscheduled power outages for the seven or so months that Kathy was on 24/7 home oxygen. Our electricity provider, ACTEWAGL, included us on their register of premises in which life supporting equipment was operating. I have nothing but praise for this program and for the professional manner in which it was managed. We were given notice of all scheduled power outages with plenty of time to ensure we had sufficient oxygen cylinders. Both Kathy and I were very conscious that an unscheduled power outage could be extremely serious: for most of the time Kathy was on home oxygen, she was physically incapable of attaching herself to an oxygen cylinder; and I could not be in the house all day every day. What would happen if there was a power outage while I was absent?
I asked every authority I could think of (ambulance, police, fire brigade, ACT Health, ACT Public Service, GP) but no-one had an answer. An Uninterruptible Power Supply (UPS) was the best idea anyone had, but the ACT Government program does not fund this option. I purchased a UPS and attached the oxygen concentrator to it but found it would only power the unit for about 10 minutes. This was better than nothing but was quite inadequate. On advice from the ACT Police, I installed a key safe in the front porch and provided all emergency services with the combination. The plan was that Kathy would call 000, even before she called me, in the event of a power outage while I was absent. As events transpired, we did not have an unscheduled power outage while she was incapacitated, but I feel very strongly that a proper plan is needed for every household with life supporting equipment in place.
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