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Briefly describe the person you care for (age, disability, special qualities, how long you have been caring for them).

I am the carer for two of my teenage children. They both have life-long disability so I have always been their carer. My 19 year old has ASD, PTSD, generalised anxiety disorder, depression. Despite being incredibly withdrawn and struggling to interact with anyone face-to-face, they are an extremely compassionate person with a desire to help the people they care for. They are quite artistic and also very intuitive in regards to technology, making it work, fixing it and creating things using it.

My 16 year old has a rare chromosomal syndrome, ASD, selective mutism, generalised anxiety disorder, ADHD. He has a fabulous sense of humour and loves to make people laugh. He is also very creative and tech savvy and dreams of being a computer game designer.

How long have you been accessing services for the person you care for through the NDIS?

We had our first NDIS plans started in March 2017 after a 6 month process of being bought on by the NDIA.

What are the benefits you have found for the person you care for having access to the NDIS?

We live in a rural area where there are no services and although we can access services in a nearby larger city, we found that these services were not available to us at all once the NDIS had rolled out.

Being able to access regular therapy services has definitely been an enormous benefit to us. We are being able to do this in a way that we have never been able to before.

My children are not particularly ‘cookie cutter’. We have a difficult background that is marked by institutional abuse. Many traditional disability services do not suit us and in fact have prevented our access to services over many years. Through the NDIS we do have the capacity to creatively develop our own supports to suit the individuality of my children. This takes time, and even now in our 3rd year we are really only starting to get good teams set up, but the improvements that I am seeing in my children, the growth in their independence, their increased engagement in life and the community, makes the effort worthwhile.

What are the benefits for you as a carer with the NDIS?

Prior to the NDIS I was literally the sole carer for my children. We had no other supports. This was incredibly isolating and detrimental to my mental health. Having a team that I can work with, who are happy to help share the load, has removed a huge burden from me. I am able to focus more on my role as mother to my children. I have the time and opportunity to do some things for myself. My mental health is much improved.

Have you had any challenges supporting the person you care for with the NDIS? How have you overcome these?

There are so many challenges with the NDIS. My top 3:

Accessing services. It has taken months for me to get into therapists. Even to find appropriate support workers is a hard slog – last year I spent 8 months and went through 3 agencies trying to get a support worker for a particular activity I was trying to organise for my 19 year old. Building relationships with agencies does help them to be more proactive. Sometimes the smaller agencies can be better at finding good support workers.

Living on a 12 month cycle. Every year is a lottery in terms of how your plan will be assessed and new funding allocated. I have found it seems to be unfairly dependent upon the planner you are assigned on the day. My 19 year old’s plan was halved for our second year and has been tripled for our 3rd year. It is hard to comprehend such huge changes in their assessed need. Going to planning meetings well prepared with reports, listed goals that line up with the NDIA legislation and a plan for how to achieve the goals is helpful. I always take my support co-ordinator to planning meetings and I have also taken therapists.

The review process is seriously flawed. After my 19 year old’s funding was halved in 2018 I lodged a review with the help of a legal aid organisation. Despite multiple calls and me lodging an official complaint, I never received any information about this review, the funding was not changed. I don’t even know if my request for review was looked at. Some people I have talked to have had some success with going into the NDIS office with the person they care for and just waiting until someone will see them. Usually this promotes action as the person with disability gets disruptive.

Describe what would have helped you the most when you started with the NDIS.

I absolutely had no idea what to do when we got started with the NDIS. The website is a bit helpful but I think that attending a tips and tricks workshop on how to get started would have been really useful. These are often put on by the local area co-ordinators.

There are a number of online services that have webinars which makes it possible for people who, like I was, are housebound.

I would have needed someone to tell me that I needed to do one of these workshops too – I honestly had no idea!!

Describe three things to consider when preparing for your planning meeting.

I don’t think that I have worked out the formula… if there is one… for a successful planning meeting. As I said before, so much depends on the planner, so I think you need to go open minded and ready to be flexible.

Everything in the plan will be based around your goals, so it is important to spend time thinking about what those goals are. Using language that is NDIS friendly is important – they are looking for things like capacity building; social and community participation; economic participation; living an independent life; transport training. And remember that everything comes under the umbrella of ‘reasonable and necessary supports’.

Being able to link your goals to funding categories (how will I achieve this?) assists the planner in their job e.g. I want to be able to cook meals for myself. To achieve this I will need therapy support by an OT to assess my kitchen and determine what adjustments need to be made to make this space safe for me to access. Based on this assessment I will need to make modifications to the space and purchase appropriate low cost technology. I will need to attend weekly cooking classes with a disability support agency. I will need a support worker to help me with shopping for groceries and cooking the meals at home.

Did you submit a carer’s statement? What did you include?

No. I have had varied success in my attempt to describe in a meeting the impact of caring on me. In my 2018 plan meeting I was met with a flippant remark – ‘well we need to make sure you don’t burn out’ and received no recognition or support for my role in the plan at all.

In my 2019 plan I was offered additional support as a carer in response to being asked by the planner what my last 12 months had been like, and that additional support has appeared in the plans with the core support funding category.

How did you decide to manage the plan for the person you care for? Why did you choose to manage in this way? What tips can you provide in regards to plan management?

I have support coordination and plan management. This was chosen for me in my first plan by the planner (I really had no idea what I was doing!). I have chosen to continue with this model because it does take responsibility off of my plate.

Support coordination gives me information about a broader range of services and when I get sick of filling endless piles of paperwork, my support coordinator helps me out with that as well. Plan management gives me access to more services than NDIA controlled and even though it is less than self management, I am really glad to not have the hassle or legal responsibility of having to check SLAs, pay bills etc.

I did have to change plan managers last year as I was having terrible trouble with the service I was with paying bills. I have now gone with a smaller, boutique service and I have had no trouble whatsoever.

How have you found the implementation of the NDIS plans? What tips can you share to support carers through this process?

Implementation is really slow. I think more so for us because we are trying to customise so much, but regardless it is a long, tedious process, requiring you to do endless amounts of repetitive paperwork.

Patience. As I have already said, actually getting people to spend your money on can be really difficult.

Don’t be afraid to say it’s not working. I’ve allowed my 16 year old to try various different things and they have not all worked. Sometimes it is the wrong activity, sometimes it is the wrong person. I am not someone who really likes to rock the boat and when it has taken a long time to get something in place it is devastating to then walk away from it, but I have found in the long run it is better to accept the experiment failed, move on and try something different.

Is there anything else you would like to share to support carers through the NDIS journey?

There are increasing numbers of workshops and webinars to help carers in the NDIS journey, and also open our eyes to what else is out there. I have been to a few different things and have found them extremely useful in building my skill level and increasing my vision of what is possible for my children. My support coordinator is the person who often tells me about these opportunities and you can use your NDIS funding to pay – though they are often free.

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