Dana’s advice

Dana's advice
Posted on Wed 6 Apr 2016

Hunter Mum Dana Spiers and her family have been through the NDIS transition with her daughter Caitlin. She writes about the experience for her for other parents about to start their NDIS journey.

NDIS: Embrace don’t Fear – A Parent’s Perspective

I believe the National Disability Insurance Scheme (NDIS) is a necessary reform to the way disability services and supports are funded in Australia. It is only early days and we need to have patience, as there are still a lot of issues that need to be resolved and fine-tuned. I have run into barriers at many turns but have worked my way through them, at times with assistance from others. Don’t be scared to report your issues as this is the only way they are going to be resolved and appropriate procedures put in place for the future running of the scheme.

The first thing I would like to say to other families that are about to go through the National Disability Insurance Scheme (NDIS) is relax and prepare. I made myself sick with worry prior to starting NDIS. I spent countless hours researching online and experienced feelings of confusion, panic and fear. At no point did I feel like I was in control. Now we are a year in and I realise it was unnecessary. From our experiences, as a parent who has been through the initial process, my advice would be as follows and I hope it helps make your journey a little less stressful.

Things to think about

You know your child best! Before you start anything I would recommend sitting down by yourself or with your family and think about what you want life to look like. I know this sounds simple but once we started this it kept expanding. I thought about what a normal day is for our family and wrote it all down. It started when we woke up and finished at our bedtime. It included whether she was able to do the activity independently, with some assistance or if we need to carry it out for her. This was quite insightful and emotional as until I had completed this schedule I never really realised how much we do for her and how much we do that ‘normal’ parents of a 14 year old wouldn’t have to do. We do it because we love her and wouldn’t change anything but it was confronting. We took this information and looked at each section of the NDIS plan and tried to work out whether there was any way of making her more independent. We then placed our daughter’s wants and needs into headings for short term and longer term and prioritised them. As a result of this process our daughter’s goals for her plan became obvious. Make sure the goals you set are realistic and achievable if you want to get the most out of the NDIS. Examples of our goals were socialising more and improving her mobility around home and in the community.

How to prepare

I believe being prepared is vital if you are going to have a thorough and successful plan. There are lots of ways to prepare.

  • I attended local NDIS information sessions and found these very useful and informative. They would explain the scheme, the options available and what the NDIS means to you. At the end of the session you are able to ask any questions you may have.
  • Once it has started in your area ask around and speak to other participants. Find out their experiences and they might have thought about things you haven’t.
  • I found myself writing everything down as I came across or thought of services, resources or equipment that I thought might be beneficial to our daughter. I would then take this to our therapists and get their advice on whether it would be something we could request in our plan.
  • We were very lucky, Cerebral Palsy Alliance organised a pre-planning meeting where they went through and discussed each of the areas involved in the NDIS planning meeting. We noted all the services, resources and equipment we wished to apply for including how many hours of therapy and services we thought our daughter needed to be successful in reaching her goals.
  • When preparing for your meeting, keep referring back to your goals and how you are going to achieve these. When you request something think about how this is going to assist the person reach their goals, increase independence or improve quality of life. This is the main purpose of NDIS after all. It isn’t about getting the biggest plan it is about getting the best plan for the person with disabilities.

At the meeting

When going to your meeting have all of the information you have compiled with you. I took my Pre-Planning checklist that I completed with CPA, my outline of a normal day in our household, my folder containing medical reports in case these were needed and any other documents or lists I had prepared that I thought would help assist our planner either get to understand and know our daughter or assist in deciding what she requires and in preparing her plan. The more organised you are the more relaxed and in control you will be during the meeting. Don’t be scared to be a little forceful if there is something you really believe is necessary and important in reaching your goals. Remember, you know your child and your planner doesn’t. Help them see what you go through and don’t feel like you have to make it sound like perfect families, as they are not there to judge you and how well you are coping. They are there to help make life easier for everyone.

What it was like?

Nerve Racking!!! I was so nervous and anxious. I had been told that once your plan is developed it was really hard to have it amended until your review in 12 months. So I was worried that I was going to let our girl down and not get everything she needs. I now know this isn’t correct. Our plan has been amended several times over the past year as our daughter’s needs have changed or we realised things had been missed. It still gets stressful at times but I now have a good support unit around me that help me with my NDIS plan.

Do what’s best for you

When deciding how to manage your plan, do what is best for you! I was originally going to self-manage but I found I just didn’t have the time or strength to do it so I changed to have my plan Agency Managed. It has been the best decision for me. If your plan starts getting too overwhelming for you to cope with implementing ask around and see if you can get help. I got help through the allocation of Coordination of Supports in my plan. This enables me to have someone go through my plan with me and assist me in finding the relevant services to support my plan. I was allocated 12 hours, which has been fantastic. Having someone who knows the system and who to contact and what organisations can assist me has saved me so much time and effort. My daughter has been able to start enjoying her new life and more importantly is achieving her goals. I wish you all luck with your NDIS journey.

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