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Yesterday I attended the Cerebral Palsy Alliance’s information session about the NDIS (National Disability Insurance Scheme). Like many people I feel hopeful and nervous about how this new funding will work for people with a disability.

What I do know is that it’s time for us to truly get our act together and start planning for BJ’s future. The meeting was a positive affair with videos prepared by people who are already accessing the NDIS and happy with how it is working. It is great to hear that nothing is set in concrete and the most important take away from the day is that planning and preparation for the meeting is essential.

After years of being limited by funding and waitlists I find it hard to look beyond the basics. I guess we work back from BJ’s goals and see how this can be built into a plan.

I took notes yesterday and thought I’d share them with anyone who is still not really sure what the NDIS is and how it might work for them. If you haven’t got along to an information session with a service provider I encourage you to do so. Hubby has been to one at BJ’s day program as well, just so we are both informed before the meeting.



Joanne Hewitt was the presenter and made it clear that the NDIS is still changing and evolving, so the information provided at the session was correct for now.

NDIS now

Joanne said it is an incredible change but it won’t be perfect and there will be clunky bits while it is being built.

97% of those already on the NDIS who were surveyed said they are satisfied.


A move to more choice and control.

Move to a fee for service model.

Move to block funding, individualized services and personal budgets.

Funding based on your need and aspiration not based on diagnosis.

Organisations (like CPA) will work on demand.


  1. Economic participation

In the past some people have not had the right transport to work or not enough support to work.

Parents haven’t had the right support to be able to return to work when caring for a child or adult with a disability.

NDIS aims on providing the right supports so people wanting to work will be able to get support to help this be achievable.

  1. Social participation.

Helping people be more connected to their community. When doing your planning think what that may be for you. What would it take to be able to participate?

  1. Choice & Control

You won’t have to take a particular service. You can plan and build. You’ll have choice over your service provider. You can choose one or many.

  1. Life time support for services.

Once eligible you don’t have to keep proving your disability.

You’ll have the ability to keep planning and changing your package though.

The Hunter in NSW has had the NDIS since 2013. It is expected that 70% of NSW will have it by July 2016. Things will happen over a period of months it won’t all happen on 1 July.


People 0-64 years.

People with a significant, lifelong disability with permanent needs. Funding reasonable and necessary supports.

It is NOT means tested.


Doctor appointments, prescriptions, a house or rent.

They will not pay for an aide in a classroom as this is seen as the education department’s responsibility but they will pay for a therapist to assist with implementing a program at school.


It will assist with car modifications but won’t buy a new car (there are conditions around the age of the car they will modify).

It will assist with home modifications but won’t buy a house.

It will pay for a carer to go on holiday to assist but not pay for airfares.

You do not lose your Disability Support Pension.


We were shown a video with several families sharing their experiences with the NDIS.

They commented that they’d been nervous and didn’t understand what the NDIS would mean for them.

Many were concerned that if they made a mistake on their initial plan that they wouldn’t be able to amend it. They learnt that they can appeal. One family said, “Nothing’s in concrete, you can change as needs change.” One family sited an example that they had 3 revisions in 12 months due to their child’s needs changing due to surgery.



Research what isn’t covered.

Go to therapist and speak to them.

Be assertive, ask questions and express why you’ve asked for something. Justify your requests.

Prepare, prepare and prepare!

Spend time thinking what your child needs. Talk to family, friends and service providers to get additional ideas.

Think holistically. Work out your goals – social and physical.


CPA can provide support for preplanning.

Nominated planner will not be from your service provider. Planners are often people who have a background in disability, health and some therapists.

Think about goals for next 12 months but keep in the back of your mind your long term goals. Ask yourself “What do I want out of life for the next 12 months.”

Some people may want to get out more, participate in more social activities, make friends or possibly spend more time at home with support.

Mention the equipment you need including incontinence aids, nutrition aids, wheelchairs etc.

NDIA won’t advise or make suggestions. Talk to pre-planners to get ideas.


This depends on your goals.

There is flexibility if you are requesting something for skill development through therapy or equipment needed for this. You can mix and match say physio and speech therapy if it is around skill development.


Transport is still proving tricky and NDIA is aware that this is an issue and they are still trying to work out.

If you or your child is currently receiving mobility allowance it will be transferred to NDIS instead of Centrelink.


Services will change as much as you want them to. The good news is that waitlists have disappeared in areas where the NDIS has been rolled out.

Once you get a plan, service providers lose Government funding.


–          Agency Managed

Pros – Easy, little financial management required by you, no cost to you.

Cons – You have to choose from NDIA registered providers, you can see the funding but can’t manage it.

–          Self-Managed

You still do the planning but you pay bills as you go. You have a separate bank account and you are provided with a small float to start you off.

Pros – Great for people who like control. You can purchase supports from people who are not registered with NDIA ie you may choose a personal trainer rather than a physio for what you want.

Cons – Requires you to pre-pay and claim back. Requires stronger financial skills.

You can do a bit of both. For example, you could have the majority of your funding agency managed but self-manage a portion which is for continence aids and say a personal trainer.

You can swap from agency managed to self-managed once you’ve gained confidence. You can choose self-managed and pay plan management provider to look after the financial management. The advantage of this is that it is easier than self-managed and they can help with hiring and paying staff. It attracts a fee but this can be built into the plan.

Cerebral Palsy Alliance (or your current support organization I presume) can support with the following services.

–          Help you to consider your goals and what is important to you now.

–          Check all life areas that are important for you to receive services and supports.

–          Review your current & future services and supports.

–          Provide you with reports and documentation.


NDIS has been better than expected.

Smoother than expected.

One family said they got nearly all they needed.

Equipment and home modifications took about 12 months for one family.

Overall really pleased.

One family were pleased to find that a hospital bed or their daughter was covered which had made a difference to them as parents assisting her.

Another mother was pleased to get a posture chair for her son.

There is lots of information out there.

NDIS – 1800 800110 –

Cerebral Palsy Alliance have parent videos and presentations on their website –

My Choice Matters – 1800 144 653 –

NDIS Grassroots Facebook page is a great place to join the conversation with parents who’ve already transitioned to NDIS, parents planning and some providers.

If any of you have already transitioned to the NDIS, I’d love to hear some ideas of things you’ve built into your plan. How it has helped you and any tips you think may help families still in the pre-planning stages.

Please remember these are just my notes taken during the Cerebral Palsy Alliance presentation. I scrawled it down with great gusto but I suggest checking all details with your service provider, the NDIS website or heading along to a session yourself.

Don’t forget to join the conversation on our Facebook page here.



  1. yes and at the other end of the age spectrum…..with a 66 year old husband with Motor neurone…talk about age discrimination….try that for starters…

    try dealing with
    MY age care…

    • Hi Susie,
      They spoke about why the NDIS didn’t cover the over 64 year olds and while I could see it would be tricky, your example is a definite reason why there needs to be exceptions to that rule. It must be so frustrating to be out of the scheme by 2 years despite what I am sure is a desperate need.
      Take care. Julie

  2. I am the mother in the video who was happy to get a posture chair for my son
    Unfortunately a lot of my more constructive messages , the not so positive ones, were not included
    My biggest advice is prepare and KEEP RECORDS of everything with service providers and NDIS
    Don’t be afraid to question service providers it’s been shown they are not used to new system and trust me are getting it wrong
    It has not been smooth you have to fight for everything and justify everything
    Don’t expect to have same planner and don’t expect them to show compassion- they aren’t your friend
    Be firm and assertive and find a voice for yourself or your child
    I was disappointed after participating in this video that it looks like I’ve had a really positive experience, sure we got the chair but it’s been a constant struggle and my son is severe high needs
    Some days I spend the totality of the day on the phone

  3. I’m a mother of an 18-year-old mentally disabled child. My husband recently joined a campaign program that supports children who are needing NDIS services. I agree that NDIS will help people to build connections with the people in their community. I appreciate you helping me learn about the pros and cons of getting the best provider in town. I’m looking forward to hiring one for my loving son.


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