our experience with the NDIS so far

I know some of you are in areas that are waiting for NDIS to roll out or are just waiting to get a planning meeting. We finally got a plan last week and are so excited about it. I thought I’d put a few things down that helped us and how long it all took……….patience was definitely something needed.

Why it’s so important

When the NDIS was first announced I thought it was a such a good thing because of the families I knew who had children with disabilities…never knowing we would need it. The current system of funding for under 7’s is really a tick a box for a number of conditions. There is no funding for children with global development delay or intellectual disabilities if they don’t meet the criteria for Better Start or Helping Children with Autism. That means there are children with moderate to severe disabilities or rare genetic conditions who are not getting the funding they should be able to access because they don’t tick a box. That is where we found ourselves 4 years ago. The NDIS looks at the child, their disability and their needs and works out a package for the child and it’s not based on ticking a box with a list of some conditions.

Does it fund everything?

No. And that doesn’t make everyone happy. People want big packages to fund a certain type of intensive therapy or to cover all of their therapy costs and I went into the process knowing that I might not get everything we wanted but that it had to be a whole lot better than what we are receiving which was a few blocks of therapy sessions each year provided by early intervention.

Now in saying that I know families whose children require wheelchairs and significant assistance and have had to appeal their first plans. On the flipside I also have seen people complain in forums because their child with no physical or intellectual disability who can attend a regular school etc won’t get weekly therapies or their orthotics covered. So not everyone will be happy and if you do need to appeal then you are entitled to do so. However it can be a long process and you might not be able to access your original plan until the appeal is completed.

If you are currently receiving services then be sure to write down everything that you are receiving from organisations and how frequently and put them into your plan.  Take note of their rates/charges under the NDIS especially for services that you are paying for privately, you will most likely see rates rise once you have a package.

Also if you are with organisations who are transitioning over to the NDIS make sure you find out beforehand. We didn’t know that our swimming club are transitioning over and that it has to be included in our plans and not paid by us anymore. As a result it’s not in our current plan and to add them would require us to go through the whole process again and get a new plan so we’ve had to leave that to include into our next plan next year.

How long did it take?

Roll out in our area started July 2016, we were accepted into the scheme in September 2016 ( I cried that day as it was a big deal for us) and told it would be about 6-8 weeks when a planner contacted me. Then there was a big change and the early intervention planning process was handed over to Early Intervention providers, this meant staff needed to be trained and so on. So by the end of the year it was looking like it might be February or March. Then we were told we’d have a plan by June. In the end my planning meeting was held in April and my plan was approved and came to me the 2nd week of May so nearly 11 months from the launch in our area.

What did I do beforehand?

I gathered all of our reports and documents into a folder so that I had everything to hand for our meeting. Because we were already accepted into the scheme with our disability we just needed to submit our speech reports because that was really our greatest need.

It’s good to write down a typical day and everything you do for your child and I mean everything. Can they dress themselves, feed themselves (even little things like are they using a fork or a spoon). I had to think about some things during the meeting because I hadn’t written down a day so I think that would be a big help beforehand.

How many goals did I have written down before my meeting?

Actually only 2 or 3 but somehow we got to 5 goals during our meeting and they were approved into our plan.

What does the plan look like?

The wording will be different to what you are used to. We have 2 amounts of funds in our plan. One is called CB Daily Activity (CB = Capacity Building) and this is the bulk of our funding to be used for speech, OT, physio, early intervention and social skills classes. The other amount for us is Consumables for our continence products. There are other categories for people who require transport, access to community services, equipment and so on. And if you are not self managing then an amount will be allocated to someone else like your early intervention provider to manage your fund for you.

Why I chose self managed?

I have a physio I have used in the past who is very good and she is at one business, I have to find a new experienced speech therapist who will be at another business, we love the early intervention program we are doing privately so she is at another business and we have a lovely OT who includes the little kids in the sessions and we will use that at another early intervention provider. Because I’ve managed my own BAS and tax in the past I figured I could manage the fund and the online system myself and it wouldn’t be too daunting. You do need to keep records for 5 years, open a separate bank account, keep good records and so on but for me I figured it gave me more flexibility to find therapists that I wanted to use.

What was the hardest part of the process?

Waiting….I kept telling myself patience is a virtue!

Best tip

Talk to your planner after you receive your plan. Go over any concerns, make sure you understand everything, ask questions. If you are self managing find out the info you need to get everything up and running. You might need help being put in touch with local suppliers. It was so good to meet with the planner the next day to go over the plan as she hadn’t seen it and to check a few things. I felt so much better afterwards and reassured.

And another tip is to budget out the money for the 12 months ahead. I’m going to ask my spreadsheet guru of a husband to work out planned spending and actual to help me allocate everything to our goals. It doesn’t cover all of our therapy costs and we are still paying for more than half of our early intervention ourselves but it is a whole lot better than the past 4 years. Also a reader just let me know about this app which is coming soon to help you if you are self managing

Overall feeling

Good! We are both (hubby and I) so happy to get started with things that we’ve wanted to do on a regular basis. It’s not life changing in the sense that all of our struggles are going to magically disappear but it is life changing in that we can work on speech with a therapist we want, to continue with OT instead just a few sessions every few years and to go back to physio and work on a few things as well as a few other things we wanted to start and continue with.

And the best thing for us is having something that doesn’t just stop when she reaches a certain age. She has a lifelong disability that will affect her life forever and it’s nice to be working towards small goals and big goals and know that help will be there as she grows older (and we grow older).

 

Comments

  1. Chrissi says:

    So happy to hear this news for you guys..I can imagine the sigh of relief and happy dance to know you are now supported with a plan and funding for her

  2. Thanks for sharing this . I hope it all goes smoothly for your family.
    I just found out I can maybe access NDIS for my hearing impairment and I’m hoping to self manage.

  3. Corrie this is an amazingly helpful post. Do you mind if I share it with some of the families that I work with? (I work in early intervention).
    I do have a question about swimming. I was under the impression that items can be added to a plan if they become necessary, possibly with the advocacy of a therapist. Maybe have a chat to your Physio, as if it can be, it might help a little more. (I figure there’s no harm in asking!)

    • Of course Jane, share away:) Yes our swimming can be added to the plan because we go to a special needs club but because we didn’t find out before we did our plan and it comes under a separate title (I think community participation, health etc) the planner said it was better just to wait until we do our next plan next march rather than try to go through the process again! But yes we’ll easily have it added and we will just keep paying the term fees until next plan:)

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