A tough journey to find a new home
With housing and the NDIS when the going gets tough people who have dreams of a better home for themselves or people who they love don’t need to get tough. They do need to refuse to let go of their dreams, to keep saying I want, I want, I want and to partner with people who know how to work through complex systems and take on, when it’s hard for families to manage themselves, some of the tougher conversations that need to happen.
And there is no better example of that than Lewis and his mum Annie
Lewis is someone with extremely complex and very very high needs. He is one of the small percentage of people in Victoria who needs a robust house and while Annie loves him as much as anyone could love a son there is no way she could have kept looking after him at home for much longer. The physical and emotional demands were just too high. Lewis is someone who needs a specially designed house and a lot of staff support, 24 hours a day. So asking the NDIS to provide this was never going to be easy. If you think saying to the NDIS have a look, its tough out here and we need help, is enough, then you will want to think again. There are extraordinary levels of reports and other information that needs to be provided, examined, measured, approved at multiple levels and filtered through a system which at some point stops thinking about you as a person and starts thinking about you as a number that costs money. For family’s, very keen or even desperate for support and looking at the scary task of finding a suitable home you are stepping into the world of reports and people measuring your child’s life and abilities in a way that you will have been unlikely to have faced before.
Annie and Lewis have worked through this system now, and their dream is coming true. Lewis has a fantastic new home in sight. But the journey itself was not fantastic and Annie is the first to say that she at times didn’t think anything would happen. This seems like to good an opportunity to miss to reflect and share about what made this work for Annie and Lewis. Because one day, while possibly you may not have the same level of need as Annie and Lewis, you may have a dream about finding a new home and you may need the NDIS to help you get it. So it may be useful to think about what made this work for Annie and Lewis, it’s the same as the things that made it work for other people we know:
- They were clear about what it is was that they wanted
- They partnered with people who could support them and who knew both how to work through the system, and who knew how to help them create anchor points. Points that once they got to they would refuse to move away from. (That was us this time)
- Once they started to say I want, they didn’t stop, even when it didn’t look like anything would happen.
- Annie, when it was too tough for her and she was tired and worn out, didn’t stop, she just asked us for more help. A big part of this was our staff being able to keep providing all the information that she needed. It didn’t matter how tired or worn out Annie was our job was to help her to be able to stay in control and make all of the major decisions. We are not there to make decisions, the job is always to support families to make their own decisions.
- When Annie and Lewis were at their tiredest, and worn down, they kept the dream alive, they didn’t lose sight of what they wanted.
- Most of all they did not do it alone, they got people to do the bits they couldn’t do.
We know not all journeys to find a home are going to be as tough as theirs, they wont be and they shouldn’t be. But all the journeys can be encouraged by their story and the reminder that it gives; that persistence, partnership, focus and not doing this alone can make good things happen.
Well done Annie you did a great job!