Home is where the heart-support is

The Age (Aus) - 21 Dec 2008

Quote :

There is an urgent need for accommodation for disabled people, reports Tom Reilly

TONY McDonald has a saying she often repeats to herself: "Don't get sick — you haven't got time, and don't die, because there is no one to replace you."

It's a mantra the 77-year-old and her "toy boy" husband Arch, 76, stick to as best they can. That's because the couple are the primary carers for their son, Rohan, who has Down syndrome and other medical conditions that have left him severely disabled. It's a round-the-clock job they have carried out since his birth 35 years ago....

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another grim outlook. I deffinitely don't want to end up not having Patrick organised to be living somewhere else when he's in his 30's. "Handing over care to the service/govt.", to be able to go into supported accomodation. I did not realise this was the case but should have because how else would day to day decisions be made. I'm not sure if this is an adequate model of care. For those people that could live in independant housing with someone visiting regularly, I think that would be better. Obviously some people with disabilities are not able to do this though.
My previous MACH nurse had a son in his 20's with a developmental disability and had been able to get him into supported accom. only a few months before her husband died so she was pleased they had arranged this. They are in rural Vic and her son stays with her every couple of weekends and when he is at the accom has a busy week schedule of adult day activities that he goes to.
I want more than this for Patrick and hope this desire is able to be realised even at least partially. Coral

I'm glad I read this. We better get to work girls and make sure our kids are going to get the living conditions we want! It's such a tough one, handing over care or continuing on. I guess since they have the choice and the opportunity, they will keep him at home until they're forced to hand his care over. That's not a good way to be either. I have a friend who says that parenting is a journey of letting go of your kids. She has a 4 and 2yr old and I think she's done a pretty good job already lol... but I do need to take a leaf out of her book and learn to share the care of my kids more. For their sake as much as mine! Particularly for Jirah who will need long term care. The only people I could really rely on at the moment are my parents but they're getting on. I've mentioned in passing to my sis-in-law and I think that they will be more than happy and suitable to help out, but that opportunity won't be for a while yet (they're just starting their family ).

Cas

Yes it's a very tough predicament isn't it. My step mum actually did the hand over care thing for her son who has CP. He now lives independantly in a house and has carers who come in daily to assist him with basically everything. He is what you would call severely affected, in a wheelchair, very little use of his hands. He copes really well.

I really hope I never have to make that choice with Andy. It certainly makes you think doesn't it. We really need to be proactive while we are still youngish and make sure our kids are capable and independant as possible.

I guess I am being naive in hoping that if anything does happen to us, Chris and Lia would be old enough to look after Ciara (If she needs it- i.e can't live independently or in a support home) I know if anything happened now, my Parents would step in, no problems or my brother- although they have 3 kids of their own lol

I have a BIL with CP who lives in supported accommodation in SA. That's about all I know about the type of situation he is in- maybe I should ask more questions I don't know much about him or his situation at all