A Q&A on the NDIS by Parent, Carer and Council Member Sally Coddington
This "Member's Corner" was published in i-Contact on 30 September, 2016
What insights did you gain from the NDIS planning process?
There were two main insights for me from the NDIS planning process. The first is that you are the only expert in your child’s needs. Planners are working with an extremely wide variety of people and even if they have some experience with disability they may not have experience with your child’s disability.
The second insight is the importance of informal, community & mainstream supports. I realised that I don’t want Nicky’s life to be filled with paid supports – even if NDIS will pay for them. Informal, community & mainstream supports are unpaid supports and as challenging as it might seem to establish these for and with your child – these are the supports most likely to give them a normal life. This area needs a long time to develop so the earlier you start working on it the better
What was the best part of the process for you?
Getting our NDIS package and finally being able to buy the supports we need was the best part.
How did you prepare for your NDIS meeting?
We were very early on in the trial site so we did very little preparation for our NDIS meeting. As time has gone on most providers have become really proactive in supporting their clients to prepare for NDIS. I would suggest that families engage with their providers and make sure that they take their advice about what should be included in their plan.
I would also suggest that families connect with other families to find out what they have managed to get included in their NDIS plan. There are online communities like NDIS Grassroots Discussion on Facebook that can be really helpful.
What areas of Nicky’s life did you prioritise within your goal setting and planning? What goals and outcomes did you focus on?
Our priorities were comfort, positioning and communication. Initially our outcomes were tied to establishing a more ‘ordinary’ and sustainable family life. So we needed after-school support for Nicky and some respite so we get the opportunity to recharge and refresh.
How did you map out the hours of support you would need for Nicky?
This was pretty easy for us – we needed 3 hours each afternoon after school and full time during school holidays. We also wanted the opportunity to get away overnight. So overall we got a pretty generous package. Having said that, it is what we need to hold down jobs.
How did you map out her other support needs for example equipment and therapy needs?
We did a really poor job in mapping out Nicky’s therapy needs and now we’re paying for it. We under estimated how many hours of therapy supports Nicky was receiving – in hindsight I should have asked her therapists to make recommendations about the hours of support that Nicky needs because they knew better than me how much work they were putting into Nicky.
Unfortunately, as wonderful as you her current therapists are they can only provide support for the hours allocated to Nicky. So we will need to request more hours when her review rolls around. I’ve asked her therapists to advise me on how many hours to ask for.
How far ahead did you plan for in terms of your daughter’s needs now and into the near future?
When Nicky first went on NDIS she was 9 years old– so we didn’t plan too far ahead because she had another 8 or 9 years of school ahead. But now we’ve started to think about where Nicky will live when we can no longer care for her. And we’re interested in some of the options under NDIS to invest in building homes for people like Nicky.
And as I mentioned earlier I don’t want Nicky’s life to be filled with paid supports – even if NDIS will pay for them. So informal, community and mainstream supports are things we need to start thinking about now.
What was your NDIS meeting experience?
Great – we were really lucky to have a highly experienced and empathetic planner. But I have heard mixed reports of other family experiences.
It’s important to control the mood of your meeting by keeping it optimistic and solutions focused. NDIA staff are under a lot of pressure at the moment and while that shouldn’t be our problem we have to work with these people to get the best outcomes for our loved ones. So if that means showing some empathy for the pressure they are under, so be it. It’s important not to be confrontational – in the end you want your planner on your side.
Did you take anyone with you into your first meeting?
My husband and I went together. We’re both professionals so we were dressed in our work gear and I think that’s important – dress as if you were going to a job interview.
I think it’s important to go to the meeting with someone but choose carefully because while you want an advocate for your child with you there, you don’t want someone who could get agro and create conflict with your planner which could be counter productive.
How do you manage your daughter’s NDIS funding?
We have been NDIA managed up until now but are in the process of moving to self-management. Self- management allows greater freedom to choose from NDIS-registered and non-registered providers. It also means that you’re more in touch with your funding and can stay on track to ensure you use every last cent. The trial site experience saw significant proportions of funds go unspent and I expect that managing your own funds would make this less likely. Many people complain that self management is complicated and time consuming but there are a variety of tools including online platforms you can use to make it really easy.
What is your advice and tips for other parents and people with disability?
- Start early
- Learn the language
- Dream big
- Remember: you’re an expert
- Stand up for yourself
- Take your time
- Keep an open mind
- Be organised
- If in doubt, ask
- Never give up
How will you prepare for your review meeting?
I have a better understanding of what Nicky needs now that we have been on NDIS for a couple of years. I would definitely get her more therapy and especially speech therapy because I realise that without sufficient therapy Nicky’s outcomes are limited and I’d also get her more physiotherapy so that we can train her support workers in hydro therapy – something that Nicky loves!