Working towards and ILO – Video transcript


Video transcript

Jo: Ned is 26, and he has Down Syndrome, and I've lived with him until six months ago.

Jo: We had the idea that Ned would move out. We knew that the best way for him to live would be to live with other people. And we've always got Ned to think that in your twenties, what you do is you leave home and as his older and younger brother have done so, we've sort of increasingly started thinking about how that could happen for Ned as well. Well, my understanding of ILO, I think is individualised living options, which is about coming up with more flexible alternatives to either, in our case, living at home with your parents all your life, or going into 24 hour paid support care group home type model. It just seemed like that was going to be a good option for us.

Jo: So Ned has an NDIS plan. He's had it for quite a few years now, and we've explored ILO over the last year. And it's so good to an organisation who will also help to make it happen, and it's not all reliant on me. Because you get burnt out and you just want to be sure that you're doing the right thing. But yeah, finding the right organisation to work with is so important.

Jo: What they provide is the framework, the background supports. They're very flexible and they're very open to working with everybody a little bit differently. So when Ned said he wanted to live near to town and he wanted to live with some guys, and that's in a way exactly what he's got. He's living with two young people his own age, who are just there to be people to live with. They're not support workers. He's learning from them rather than having to learn it all from us. It's a very normal developmental thing, that people in their twenties leave home and live with peers and live in a share house. And he's having that experience. And he's actually coping with it really well. Although he's part of this community and he has a million acquaintances, he actually doesn't have any friends his own age. And although he has gone to mainstream schools, people go off in their own directions. And so now he's got these two housemates who are friends.

Jo: As for so many people with disabilities, finding a place to live, the bricks and mortar, is very, very difficult. And we've still got that challenge. They're in a private rental and we were extremely lucky to get that rental. And we're doing all we can to try and find a more secure, long term option for housing.

Jo: In terms of how it's felt personally, my life has definitely improved in lots of ways, but it is hard letting go because he and I had had quite a very strong relationship and trusting that to other people. It's easy to know whether Ned's got out of bed if he's in the bedroom next door. You're never quite sure what's going on in the house around the corner. My concern about him hasn't gone away at all, but I know it's the best thing and we've got to keep working at it really and keep supporting the whole arrangement because it's so good for him.

Jo: Whenever I talk about this set up to other people, other families, and I probably would've said as well, they all always say, "well, what's going to happen when they move on because they're not going to stay forever." I think as parents, we always think about, well, what's going to happen next, or they will leave, but that's the nature of share houses. That's what you do in your twenties. You live with mates and then one of them leaves or somebody else comes.

Jo: If you've got an NDIS plan for your son or daughter, it's really important to have a housing goal in there really early on or moving out of home goal or becoming more independent because then that sort of sets the tone and then find if you need it, support coordination to help look for housing and then find an or organisation that you feel you can work with, who are doing ILO. And you know, that idea that there is other people involved in Ned's life long term was a very heartwarming ... It was very important to me, and yeah, it's been fantastic.