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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 11 yrs old daughter. She had 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 traumatised, 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.

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