NDIS ..... What you need to know.

**** Updated 3rd of August 2019 ****

When we received L's provisional diagnosis of autism, our paediatrician advised us to apply to access the NDIS to help fund L's therapy costs as we were living in a NDIS trial site.

And I am glad that we followed his advice.

There are other funding options available, but without the NDIS we would not have been able to afford the level of therapy that L participates in.

O has recently been accepted as a participant in the NDIS as well which will assist us in providing the therapy that she requires.

But....

Prior to applying to the NDIS to access the scheme, we knew very little about the scheme - in fact, I'd heard about the scheme but didn't know what the scheme was. The first time that we applied to access the scheme, it was all very confusing. When we applied for O to enter the scheme we were much more prepared and we've received a much better outcome for O's first plan, than we did for L's first plan.

Now that the NDIS is rolling out across more areas of Australia, I thought that I would write a post on the scheme - all the important bits that you need to know prior to applying to enter the scheme. I'm writing this piece from the point of view that it is your child accessing the scheme but keep in mind that individuals of all ages can apply to access the scheme.

So what is the NDIS?

NDIS stands for the National Disability Insurance Scheme, at times it is also known as the NDIA, the National Disability Insurance Agency.

The NDIS is the new way of providing support for Australians with a disability. Once the scheme has rolled out nation wide it will provide Australians, who are under the age of 65 with a permanent and significant disability, with the reasonable and necessary supports that they require to live an ordinary life.

The NDIS takes a lifetime approach in supplying funding - they invest in people with a disability early in life so that there will be a significant improvement later in their life. The aim of the NDIS is to build participants skills and capability so that they can participate in the community and gain employment.

The NDIS is currently rolling out nation wide and the way the scheme operates can differ slightly from state to state.

One thing to remember about the NDIS is that they are an insurance agency. Value for money, reasonable and necessary, and all the other insurance related terms!!

How do you access the NDIS?

The very first step in accessing the NDIS is to determine whether or not your child is eligible to access the scheme. There are several criteria that you must satisfy to be able to access the scheme, these are listed on their website. I didn't realise but you are able to apply to access the NDIS 6 months prior to the scheme rolling out in your area. This will be helpful for people who already have a diagnosis and are waiting for the roll out to occur in their area.

If you have determined that your child, or yourself, may be eligible to access the scheme, the next step is that you must complete an access request form. In this form you are able to give a brief run down of your child's disability. The details that you include on this form will assist the NDIS to determine whether or not your child will be accepted into the scheme.

On both occasions that we completed these forms, I included ALL of L and O's diagnostic reports with their respective applications. You're only able to include limited information on the form itself, so submitting all of the diagnostic reports means that the NDIS is able to view medical professional information about your child's condition prior to making a decision as to your eligibility.

What's next?

Once accepted, your child becomes a participant in the scheme and you become their advocate!

You'll be assigned a NDIS planner - this is the person who will be responsible for setting your child's plan, setting your child's goals for the next twelve months and deciding what level of funding your child will be given.

During the initial planning meeting you will be asked a series of questions about your child and you will have the opportunity to further expand on the information that you included on the access form.

The only advice that I can offer is to answer the questions honestly. Some of the questions are based on your child's current ability or skill level to complete particular skills. When answering these questions, if your child has done a skill once and has never attempted or successfully completed the skill again, this really doesn't count as achieving the skill.

Don't be embarrassed to admit to your planner that your child is unable to complete a skill on their own - that is why your child needs the funding. All of this information assists your planner to determine the level of funding that will be allocated.

During the planning meeting, be prepared to educate your planner, in the nicest way possible, about your child's disability. We are now onto L's fifth plan, and it was only this year that we had a planner who had an understanding of what Autism is. This was a huge relief after having a series of planners who really did not know much about Autism.

During your planning meeting you will be asked how you would like your plan managed. As of 2019, there are now three different options - plan managed, self managed and agency managed.

Plan managed - essentially your plan will contain a budgeted amount so that you can go to a plan manager, who must be a NDIS registered provider and they will then liaise with your therapy and support providers. This option gives you a lot of flexibility as you do not necessarily have to use an NDIS registered provider. Your plan manager will pay your providers, keep track of your funds, take care of the financial reporting for you and depending on your circumstances they can also assist you in choosing your providers.

Self Managed - This option essentially means that you are managing your child's funds, or yourself if you are the participant. This choice also provides you with a lot of flexibility in choosing your supports however keep in mind that if you chose to self manage the funds, you need to keep track of what funds are spent, submit receipts to the NDIS and the NDIS recommends that the funds are kept in a separate bank account to what you use on an every day basis.

Agency Managed - This option means that you can be quite limited in which providers you choose as they must be NDIS registered. However using this option means that your plan and funds are managed by the NDIS. The providers liaise direct with the NDIS to claim payments.

Prior to L's initial planning meeting, we made contact with the Autism Association of WA to obtain advice on what information we needed to take with us to the meeting, what information we should include in L's plan and what level of funding we needed to request from the NDIS.

You have no control what so ever over the level of funding that is provided to your child, you can however influence the funding that may be provided with the information that you submit in your plan.

You will be asked what goals you would like to set for your child to achieve over the next twelve months. From the NDIS' perspective these goals must be worded in a particular way - the goals in both O and L's current plans are very vague sounding. Depending on therapy your child will be attending, your child's therapy goals will be set based on the NDIS goals.

What won't the NDIS fund?

There is an entire list on the NDIS website as to what they will fund so it is easier to list what they will not fund! Your planner will be able to provide you with an idea of what you can and cannot apply for.

The NDIS will generally not fund anything that is provided through the public system - education, health etc.

The NDIS will generally also not fund anything that is considered to be a daily living expense - medication, trampolines, and training among other things.

The NDIS will not fund anything that is NOT related to a participants disability.

Finding a Provider.

Once your child has been accepted into the NDIS, you then have the task of determining which provider or providers that you want to make contact with. With the different options of plan management, participants now have the option to attend providers who are not registered with the NDIS.

You will also gain access to your child's NDIS portal - this is where you can find providers, manage funds (if you're self managed,) and look at your child's plan and keep track of how the funds are travelling.

The NDIS has assisted in making a huge impact on L's development over the last three and a half years. The funding has assisted L on his autism journey and it has certainly alleviated some of the stress that we found ourselves under. 

We know that in the future L may not need the current level of funding that he currently receives, but it is peace of mind knowing that the funding will always be there if he needs it.

It has been a rough ride to get to where we now are, but I would honestly recommend the scheme to other families.

And no we don't get any extra funding for writing this piece. This is information that I would have loved to know prior to entering the scheme with L and now with O!

Reasons Why an Autism Diagnosis is Not The End of The World. It’s The Start of a New One.

Since we’ve received L’s diagnosis, I have had so many people say to me “oh I’m so sorry” and “but now he has a label, label’s aren’t good to have.” I’ve also been told “oh I wouldn’t have pushed for a diagnosis, not until my child is at least 8 or 9 years old.”

Every time I had mentioned the word Autism in the past to GP’s, other specialists and child development professionals, I was fobbed off. I was given other excuses for L’s behaviour and development delays.

I was told by everyone around me that there was nothing wrong with L, that every child develops in their own time and that he would get there when he was ready.

I was constantly asked why we continued on the path of the medical merry-go-round. My response never changed. I’d always answer with because there is something different about L, he is not like other typically developing children. I didn’t want him left behind.

Every specialist that we have been to has said the same thing – there is something there, we just don’t know what it is. L’s immunologist has finally said that L’s results are inconclusive but to continue down the path of treatment for the worse-case scenario is just not feasible. The Audiologist has said that yes L does have hearing issues but they won’t do anything until it really becomes an issue.

Sure it took quite a number of hours out of my life (and quite a few dollars as well) but it has been worth it. Going to specialists on a regular basis certainly hasn’t made anything worse.

I looked at it from the point of view that a medical specialist is going to tell me one of two things: no there is nothing wrong with your child, at which point I would accept that L was just a slow developer, or yes there is something wrong and we could then start the process of therapy for L.

For a lot of people, a confirmed diagnosis of Autism is horrible, parents and family members go away crying and might start to grieve for their child, or they might start imagining the worse-case scenario. For me, it was the opposite.

It was a very long process but when I was told the words “yes L is in fact on the spectrum,” I felt a huge sense of relief wash over me. The words were said ever so calmly, confidently and in a tone that you would probably reserve for when talking about the weather with friends.

After we received the diagnosis I was finally able to say “see, I told you so!”

For me, as I said, it was relief. I wasn’t imagining everything that I was seeing in L. I also thought that there are families who receive worse diagnosis that Autism. I can work with Autism. For us and L and potentially O, a diagnosis of Autism is a good thing and here is why.

The Diagnosis Explains Everything.

A diagnosis of Autism for L meant that it explained why he did the things that he did, it explained his behaviour. One of the worse things about having a child who shows so many traits of Autism and not having a diagnosis, is the not knowing. Was I reading into his behaviour too much? What is considered normal development for a child? Are his sleep patterns, or lack of, completely normal? Would he grow out of these behaviours?

To some, a diagnosis of Autism means that the child has a label. What is it about labels that get people so worried? Autism doesn't define L, it just explains why he does the things that he does.

Depending on where you live, the way in which you obtain a diagnosis may vary. In Western Australia you will need to get three separate diagnosis - one from a Pediatrician, one from a child psychologist and one from a speech therapist - and all three must be in agreeance.

In other parts of Australia, you only need one diagnosis. Go figure!

Early Intervention

They're two little words and fairly self explanatory and yet they mean so much to Autism families.

A diagnosis means that you can start your child in an early intervention program. Sure, some organisations will start early intervention therapy before a diagnosis is received, but it is a lot harder to get a foot in the door and much more expensive. Early intervention means that the pieces of the puzzle can start to be put together with the therapy that your child needs.

People who say "I wouldn't chase a diagnosis until much later" need to do some research into Early Intervention and the benefits of an EI program. I would prefer my children to get the help now, rather than be left behind in the school system.

Early Intervention has done wonders for L this year. He has come along in leaps and bounds with his speech, his behaviour, he has learnt new skills, he has learnt how to share and take turns. He has begun to make friends. He is happy, most of the time.

You can access the level of funding that your child needs.

Money is always high on everyone's list of needs and wants. Throw in a child with special needs or a medical issue and everything just seems to become more expensive and complicated. You can get a small level of funding with a provisional diagnosis, but it is nowhere near what is actually needed. Trust me, we found out the hard way.

The funding level that we received after the official diagnosis was great, it is still a very small drop in a very large ocean, but it does go a long way to helping.

The funding that you can apply for not only depends on the level of diagnosis that you receive but also where you live and at times the age that child is when the diagnosis was done. At times the State and even the suburb that you live in can dictate what funding that you can apply for and receive.

Different states have different types of funding - you might live in an area that is in a NDIS trial site, you may qualify for FaHCSIA Funding.

There also various health plans that can be implemented by a GP or a Pediatrician to help with the costs of therapy.

It is honestly worth while speaking to not only your Pediatrician after a diagnosis but also your GP and an Autism Advocate organisation, such as the Autism Association in your state, to find out what types of funding are available. Quite often an Autism advocate can assist you with completing the copious amounts of paperwork required just to apply for funding.

You can access the support that you, your child and your family needs.

After we recieved L's diagnosis, all of these lovely supportive people seemed to magically appear out of nowhere and they were all falling over themselves to help us. It was amazing and wonderful all at the same time.

Friends, who you never knew where going through the same process as you, therapists, case managers, social workers, doctors and complete strangers that become your closest friends through your therapy circles - all these people are suddenly on your side. They have your back. And it is a wonderful feeling.

L has made wonderful relationships with his therapists at the Early Intervention centre that he attends. No matter what the question is, they will always give it their best to find an answer for us. They really are part of our family now.

You can also access support through Centrelink - yes there seem like a bazillion of forms to complete and it feels like it takes far too long, but when that health care card arrives in the mail, it's like Christmas has come early. And then there is the Companion Card, a must if you are eligible for one.

Having a child on the spectrum really does rekindle your faith in human nature.

You don't care what people think any more. Well sort of.

With a child on the spectrum, everything else going on around you really doesn't seem to be that bad anymore. It is much easier to prioritize your commitments.

Your friends mother sister aunt's dog has run away? I'm sorry that has happened but I'm really not in a position to be able help look for said dog. A person that I haven't seen or heard from, and not from a lack of trying, in x number of years has had a baby, pass on my congratulations but because they haven't made an effort to keep in contact with me, I'm not going to send a card or gift, I have therapy costs to worry about. Think that I am crazy for using essential oils? I don't really care what you think, the oils help my children so I'll keep using them. It's called thinking outside the box, you should try it sometime.

Writing it all down like that it makes it sound really harsh, but over the last 12 months I have begun to realise just how much time, effort and energy I have invested in other people and how little they have given back. I don't ask for much, but a little emotional support would be nice.

A little bit of understanding and empathy goes a long way.

I'm reading a book at the moment called "The Life Changing Magic of Not Giving a F*#*" by Sarah Knight. It is a great read and it is really making me realise that I have been caring about and spending too much time, effort and money on things that I have no control over.

I need to put my time, effort and money into my children and my family. They are what matters most. And if it means that I buy essential oils, so be it. I really don't care what others think anymore.

You gain a whole set of new friends that get what you're going through.

Since we received L's diagnosis, we have gained a whole new set of friends that if we didn't get a diagnosis, we probably would never have crossed path with. Sitting around waiting for therapy sessions to finish does this to people.

You start opening up and letting your guard down. We compare notes on what our children have been up to - oh he does that too, thank goodness, we're not the only ones! We celebrate each other's achievements, no matter how big or small. We prepare each other for upcoming funding meetings. We commiserate with each other when we've had rough days. We give friendly hugs when that's all you need to keep going.

You may also lose some friends who just don't get or don't want to understand what you are going through. But that is their loss, not yours.

You get to experience a whole new journey.

There's a wonderful short story titled "Welcome to Holland" written by Emily Perl Kingsley, that tries to explain what it is like raising a child with special needs. If you're able to search "Welcome to Holland," do it, it is a great read.

No one chose to go on this journey. It isn't like we put our hand up during my pregnancy with L and said "yep, choose us, we can do it." Saying that, I wouldn't change either of my little superheroes for the world. They are my world.

During both pregnancy's we were offered various tests that could give a prediction for Downs Syndrome. Both times we declined the offer. No matter what the results came back with, it wouldn't change our decision. We would be going through with the pregnancy and would love the child we were given, no matter what. A disability shouldn't change how you feel about a child - I know in some parts of the world that this is not the case and this saddens me deeply.

A disability is not a bad thing, it just means that the child has a different ability and our job as parents is to help the child to discover their different ability and let their light shine through.

Autism is a wonderful journey - it can be frustrating and slightly scary as you navigate through areas of life that you probably wouldn't have dreamt that you'd venture into. But it is also exciting and fun. You do, at times need to learn a whole new language, any plans that you may have had, have to altered slightly, but it is exciting. We're constantly learning.

Don't be discouraged, it does take time to get used to. Don't give up, because once you start looking around, you might just start to enjoy the journey. You'll learn things about yourself, your family and other people around. You'll find strength that you didn't know you had.

You finally have a reason for ignoring all the unsolicited advice.

Prior to the diagnosis, we had so many people give us advice. Some of the advice was wanted, some not wanted. Some of the advice was helpful, some of the advice was just downright insulting and some of the advice ended with us thinking WTF?

With a diagnosis, I have been able to say - well actually L's sleeping patterns are associated with the Autism and no matter how much you say we need to ignore him, it won't make him go to sleep. Melatonin on the other hand will!

We can happily pick and chose which advice we take on board, and I don't feel guilty about ignoring unsolicited advice.

Your child can be treated differently, in a good way.

Before I go any further I will clarify something - I have always said that Autism is the reason why L and O do certain things, however it by no means excuses their behaviour. Both of my little superheroes need to learn the right way and the wrong way of doing things. I don't want my little superheroes to receive preferential treatment, I do want people to be understanding.

This ultimately comes back to the contentious label issue! One father told me that he didn't want his son assessed as the child would be labelled for the rest of his life. His child would be treated differently, the child's school would receive funding and his son would miss out! But then on the other hand, the father was criticising the school for a) pushing to get his son assessed and b) leaving his son behind! I have read and heard some pretty moronic things but his words were one of the worst. This was a kid, who just by watching him, you could tell that he needed to be assessed.

All children should be treated differently, regardless of whether they are on the spectrum or not. With a diagnosis, L gets a little more leeway on some things such as we now know why he doesn't like wearing shoes, but we are working on this point ever so slowly. With a diagnosis, you are allowed to take extra care of your child, you probably are anyway, without feeling any guilt.

With a diagnosis, people may start to accept the way you do things as well start to follow your lead. With a diagnosis, you may be eligible for Aide time at school so that your child can have assistance in the classroom to a) learn new skills and b) to learn how to "fit in" with other children.

These are all good things because your child can start to feel like they are part of this crazy world. They will no longer miss out because they don't cope in stressful situations.

There are probably many other good points about receiving a diagnosis, but these are the ones that stand out to me. So the next time that you are sobbing into your pillow, please reflect on these things and any other positives that you can think of, and maybe, just maybe uncurl yourself a little from the foetal position. There is always someone who is worse off.