New opportunities
New Opportunities|Lifelong Pathways
New opportunities: the implementation of the NDIS certainly brings new opportunities for people with disability. I was recently invited to Rockhampton by the Community Resource Unit Inc. (CRU) to share my story about our NDIS experience and how I am working towards a good life for my sons that is full of new opportunities.
There were two other mothers from trial sites who shared their stories, one from Canberra, Jan Kruger from a Imagine More and Kathy Spowrat from the Barwon trial site in Victoria. I had previously met Jan and it was a delight to see her again and catch up. It was also a pleasure to meet Kathy and to share our stories. We had an instant connection because she was someone who gets it. What’s more, she has an older daughter and has been on this pathway to new opportunities for much longer than I have.
There were around 95 people attending the workshop, “New Opportunities for a Good Life”. It was the third workshop in a series of four that CRU has presented, and had the highest attendance so far.
The day started with Susan Duncan-Kemp from CRU speaking about what makes a good life. People mentioned things like relationships, feeling valued and having their own home. Financial viability, that is having enough money to do the things that you want to do, as well as safety were also mentioned. These are fundamental things that many people take for granted but don’t always come as easily for people with a disability.
Susan wanted families to start thinking about preparing for the transition of their family member to NDIS. It is not too early to start, even though it won’t be rolling out in Rockhampton for some time. She mentioned that it is critical to take action to get the supports needed for your family member.
An important take home message for the families is that funding alone is not enough to make someone safe and happy. It is about what you do with that funding.
Jan spoke about how she and her husband had always been passionate about giving their son Jack an ordinary life. At the beginning, however, it wasn’t clear how they could do this. Connecting with organisations that shared their values helped to bring this vision to life.
Jack has his own vision statement, which for a 13 year old is very impressive. This is something that I want to do with my sons. Jan has found that by doing this and sharing it with the people in Jack’s life that they I can really focus on working collaboratively. In particular, there can be key messages from the vision that are shared with teachers to help bring them to their attention. This is a more subtly way than to continually being reminded about a goal around reading, for example.
The Kruger’s shamelessly nurture relationships. Yes, it is hard work, but the dividends can be immense. This means fostering connections made with peers at school and at other natural sessions like jiu jitsu and a mountain bike club. This is something that I do too, and my husband and I are often the hosts for catch ups. If it means that a relationship with a school peer becomes strengthened, then it is worth it.
Then it was my turn to present. I talked about each of my son’s attributes and challenges. I wanted to share that they have valued roles within their school and community. By mentioning the challenges it helped to share why we had particular mainstream and NDIS goals. I shared our story of transitioning both of our sons onto their NDIS plans. It was an unexpectedly difficult pathway for us, so I shared about how we survived this experience. We used our natural supports, and this led into an initiative with which we are all involved with called Circles@School. This is where we foster connections with peers to enable our sons to have a sense of belonging and connection at school and in the community. It is one way that we are giving them a good life, an ordinary life, just like other kids at school.
Kathy shared her daughters story of becoming a young lady. Ally recently celebrated her 18th birthday. Kathy didn’t realise how much Ally was missing out on until a few years ago. Since then they have both worked very hard on giving Ally a good life. Now, with NDIS, Ally goes out shopping for clothes without her mum. This is ordinary, mostly young adults don’t want their mums to help them choose their clothes. Ally goes out to restaurants with friends and she recently started going away on weekends with the support of NDIA funding. Although the pathway to this has had some speed bumps, the good life Ally now has as a result was worth it.
I really liked the idea of Team Ally nights where the people involved in Ally’s life meet. They catch up regularly to talk about what is working and what isn’t. It is okay for things to not work, this is, after all, an ordinary occurrence. People need to be allowed to make mistakes as this is one of the ways in which we grow. This also enables you to move closer towards the good life.
This reminded me of our meetings with our allies; the people who are on our team where we catch up on what is going on in our sons lives. It is an evening where we unashamedly talk about our children and how we are coping. I can’t expresses adequately how helpful this is. By carefully selecting the people in our team it enables us to get different perspectives on certain events. For example, we have a parent from the school the boys attend, a teacher and a special education teacher – neither of which are at our sons’ school. Sometimes you can’t see the wood for the trees and you need to collect information from different sources.
I loved Sue’s analogy that the NDIS is a bit like a big Bunning’s. When you go to Bunning’s and you don’t know exactly what you need, then you don’t know what to get. This simply doesn’t work, and therefore preparation is key.
Thanks you to CRU for the opportunity to visit Rockhampton and share our story. It was a pleasure to spend time with the other parents and I’m grateful for the feedback. One parent took the time to thank me for what we had done regarding our NDIS journey, she could see that it made an impact on future trial sites. Sometimes it is nice to hear about what is possible. It encourages you to think outside the square in giving the person with disability a good life.
For more information on how to give the person with disability in your family new opportunities for a good life, please refer to the following CRU website:
http://thegoodlife.cru.org.au/