Carer Stories

Interview with Katrina

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

I have the great privilege of caring for my now legally ours 11 year old. She has been with us as a foster child for 6 years, legally ours for 2 years. Our girl has several challenges, most brought about by how she was treated before us. Malnourished and traumatized, as well as many other factors, she is developmentally delayed and has Sensory Processing Disorder.

For example, we are currently working on her self-regulation, which to do successfully means the incorporation of sensory processing, executive functioning and emotional regulation. Our girl has challenges in all of these areas, however, our girl is making gains regularly. She shows tremendous resilience and joy, as well as meets her expectations readily.

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

We were among the first, March 2015.

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

The funding for speech therapy, occupational therapy, social skill development and a trauma psychologist has been pivotal for our child’s success. The number of qualified services have increased since 2015 by NDIS being in Canberra. Furthermore, therapeutic intervention doesn’t stop when the session is over, and we have learned from the therapists how we can parent with addressing our child’s developmental and sensory needs in mind.

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

Besides the answers above, using the framework of the NDIS such as goals, and thinking of each challenge in relation to both the therapeutic intervention and goals, has crystallized my parenting in terms of managing her challenges successfully. Also, the incentive of addressing her goals translates into regularly assessing them and course correcting as necessary.

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

Before I state the challenges, in 2015, my child was a ward of the state which was a bit problematic and clunky. However, I believe the methods used would be useful to anybody and NDIS has also fine tuned helping foster kids.

Yes, we have had challenges, the first one being the NDIS did not want to pay for her therapy.

In 2015, her legal guardian was the Director-General, and I was initially told by the NDIS that Child Protective Services would have to pay for the therapy. I applied good advice gleaned from a conference I attended-I handled every meeting with the NDIS as a negotiation. With that in mind, I prepared for the first meeting by expecting that I would have to educate the NDIS as to my kid’s uncommon circumstances and needs. I did research, consulted with and obtained evidence from experts and thought extensively about both her short term and long term goals. In addition to the NDIS forms, I also wrote an informed letter detailing my child’s challenges and I broke down the therapy needed for each challenge. Furthermore, I wasn’t emotional in the NDIS meetings, and while that is difficult, there is a time limit and I wanted to use every minute putting forth my child’s needs. I asked for justifications to the NDIS’ arguments, where I could find the policies that were mentioned, and took copious notes. After the meeting, I read the regulations and policies and applied a sound, reasoned argument. In the end, we were, and continue to be, quite successful in obtaining funding.

In a perfect world this shouldn’t have to happen, but with the insurance model of the NDIS, the onus for evidence is on the carer. Also, by coming to the table with a well thought out plan, I had a ready justification to meet their reasons for withholding funds. Furthermore, thinking of goals that your child can meet is imperative to manage the NDIS. By demonstrating that your child is meeting his/her goals proves your child can and will develop. Furthermore, use the money given to the best of your ability. If the service providers are not available, keep notes and jot down all of your attempts to engage one.

I wanted, and want, the best for my girl, even before I could use the term “my girl”. Four years on, it is evident that all my work has translated into a well-funded package, and my daughter’s success is dependent on that funding.

The best advice I can give to manage the challenges is to be respectfully relentless and politely persistent. Believe in your child, expect your child to succeed and challenge where appropriate.

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

The most helpful factor was the advice to treat planning meetings as a negotiation.

It stripped away the personal outrage at initially being offered nothing. It allowed me to bypass the emotions that would cloud my reason, and instead have a significant discussion where I was able to discuss the issues on my child’s behalf.

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

Have long term and short term goals already thought of. When you consider these goals, work backward and determine the steps needed to achieve them, and the necessary therapy and supplies. For instance, if the goal were to have a child write using a pencil, then occupational therapy for fine motor skills and therapy resources to aid fine motor function. Determine the cost for it. By having the request for the cost of funding explicit, you can ask for it more readily.

Have someone there, or yourself, take notes of the meeting, as in request, response and justification. Prepare to respectfully stand up for your NDIS participant. Because the person performing the meeting is not the person making the official decision, ask if they have enough evidence to carry your request forward. If not, ask what else is needed. Ask if they will be putting forth your request positively. As assertive as I am, I position myself for this each time. ​

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

I submit a letter explaining how he has met her goals, her challenges, and a table like this:

  • Challenge
  • Long term goal
  • Short term goal
  • Therapeutic intervention
  • Hours necessary
  • Cost to serve as my request for funding. It has served me well.


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 always self-managed because I want to be able to work with people who aren’t NDIS registered, have more flexibility and manage the money. I also wanted all the money available for services rather than pay for administration.

Going to an Imagine More workshop, I learned of Hadrill Accountants who offer the business acumen of setting up a business to hire people directly under casual employment. NDIS will pay for the business set-up costs. As well, NDIS will also pay for any insurance necessary to have people work with the participant.

Furthermore, I have been able to hire amazing, wonderful, capable and effective people that I would not have had the opportunity to work with if I didn’t self-manage.

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

I have used a team approach in the implementation of NDIS plans. Working with the therapists and everybody, I present how my child is doing, I discuss the methods we are using, and I ask how I can do better. We brainstorm to seek a better way. I listen and apply the guidance given.

The educated staff have rarely put forth a way forward that hasn’t worked. I trust the therapists and education counsellors, and I believe in the young people I work with. When somebody leaves, I always have been given someone else to take over.

At first, it was rather odd and I kept long lists, but now it is very routine.

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

When you see your child begin to develop, and continue to develop, I can’t think of anything that equals that joy. Every minute spent in working with the NDIS has been worth it.


Interview with Mary

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

I have been the primary carer for my daughter, currently aged 17. Although my daughter required extra care throughout her life, significant care was not required until her late teens, when she presented with severe depression and anxiety, suicidal ideation and self-harming behaviours.

A following assessment from an occupational therapist revealed that she had sensory processing disorder and a recommendation was made to obtain an Autism assessment. She was formally diagnosed with Autism spectrum disorder level 2 in June 2016. My daughter is labelled ‘high functioning’ which is not sensitive to the enormous amount of energy she must use to process information and interact in a world she does not fully understand.

The cost of her ‘high functioning’ persona throughout the day is extreme exhaustion, anxiety, depression, difficulty maintaining relationships and extreme mood swings at home.

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

Our third annual plan with NDIS began in December 2018. We have been accessing services through the plan throughout this time but are still learning what can be accessed, where to find services and how to manage the NDIS administration.

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

I am my daughter’s primary carer and also a single mother of three. My daughter’s needs are variable and difficult to fit into a care schedule. In order to provide her with the care and attention she needs I have had to work flexible, part-time hours which places further strain on a single-income family.

The NDIS has provided some relief in being able to provide services and activities that I would otherwise not have been able to provide on my income. Psychological care has been one of the major costs and we are extremely grateful for the assistance.

My daughter has also been able to attend social activities, which has increased her confidence and helped her to build relationships within a safe community. We have accessed further occupational therapy and assistance from a mentor, which has also built her confidence and resilience and assisted greatly in helping her gain employment.

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

My daughter does not respond well to support workers or people, other than family, providing one-to-one care however, she has engaged in social groups, funded by NDIS which have provided me with a break from caring duties and given me the opportunity to focus on my other two children.

She has recently moved away from home to pursue studies. I am very worried about her wellbeing when away from home supports however, the NDIS has enabled us to put informal supports in place for her so she has the best chance of success.

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

The NDIS is a complicated system and it needs review. We self-manage and it is difficult to interpret the plan, understand the categories for claiming and to follow through on administration. The language used in plans and on the portal needs to be simplified. We have overcome the problems with understanding plan management by talking to other users and also by requesting a one-on-one meeting with our LAC to go through our approved plan and explain what we can claim in each category e.g, psychology and occupational therapy for CB daily living.

Also, we spend all year focusing on strengths in order to build capacities and increase self-confidence but the annual review process is deficits based and is demoralising for the participant to go through. There needs to be a way for participants to express their needs without having to talk down their capacities. Before a review we take time to focus on successes together and celebrate achievements. We also talk about the need to focus on deficits and challenges during the review in order to access supports, which will facilitate further achievements. It’s a bit backwards but it helps make the review a bit more positive.

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

We had no idea what the NDIS was really about when we made the application. It remains a case of not knowing things until someone tells you or you stumble across things accidently.

I feel that it would have helped if we could have attended an information session that explained the application process (including being honest about timeframes) and also featured speakers that were using the NDIS or had similar experience.

Once plans were approved it would have been useful to attend a different information session where NDIS participants were guided through use of the portal and various administration processes – being given the opportunity to physically practice these skills on computers in the training delivery room. Easily (quickly) accessible phone support would also be useful.

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

  • Set clear participant goals. What does the participant need/want to improve their quality of life and increase personal capacity.
  • How do you want to manage the plan e.g, plan managed or self managed. Self managing provides more options for care yet it takes more work on a personal level to manage the administration. Plan managed takes out the administration woes but limits options. Do you want to self manage some areas and plan manage others? Read up on the options available and decide what will suit you, your family and lifestyle.
  • Talk to others. Spend time talking to people who have more experience with NDIS and could help you prepare for your planning meeting. The process can be daunting and overwhelming but it is easier if you have support from your peers. There are also professional advocacy services, community centres and various support networks that may be able to help.


  • Did you submit a carer’s statement? What did you include? Yes. We submitted a very short and concise carer’s statement that described the impact of care requirements on my own mental health, my ability to maintain employment and the impact on our family unit as a whole.

    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?

    We chose to self-manage because we were then able to use a wider range of providers. At the time the treating psychologist was unable to take on NDIS clients that were not self-managed.

    I find it easiest to schedule in a weekly time to attend to plan management. Keep all NDIS records up to date and filed so that they can be easily found and accessed. I keep a simple excel document to keep track of financial matters and I scan all invoices and receipts to file on my computer in the event of an audit.

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

    At first it was difficult to implement the plan. We were told it was approved then left to our own devices, which was really daunting. We accessed some support co-ordination to get the ball rolling but the second plan didn’t include support co-ordination despite a difference in goals and subsequent needs. We then had to rely heavily on networking and word of mouth to find service providers that could assist.

    The most recent plan included a very small amount of support co-ordination because my daughter was moving away from her formal and informal supports. There was a great deal of difficulty implementing the plan when I am managing everything from miles away. The support co-ordinator we wished to work with had contacted me and said that her local NDIS office wanted me to fill out extra forms.

    My local NDIS office told me conflicting information. The problem went on for two weeks, with my daughter unable to work with the support co-ordinator, until I engaged an external advocate to solve the problem. I was already highly stressed at my daughter moving away and worrying that she had no supports added to this stress.

    Is there anything else you would like to share to support carers through the NDIS journey? The NDIS process can be daunting and overwhelming. Try breaking it down into steps and access all the supports you can during this time. Reach out and get help if you need it and take time to research the process so you can make informed choices.

    Remember that the process will take longer than you might like and try to take time out to look after yourself. You are doing an amazing job as a carer and your loved one will benefit most if you are able to care for yourself as well.


Interview with Sue

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.