Dear Ms Shanahan

Recently I read an absurd article in a major Australian newspaper in which the author states that autism should be removed from the NDIS. In essence, the author states that individuals with autism shouldn't be able to access funding, that autism shouldn't be classed as a disability and that disability funding should be given to those that really need it.

Whhhaaaattt!!!!!!

But before I get onto my open letter, I'll give you a little background on the NDIS.

The NDIS is the National Disability Insurance Scheme that is slowly rolling out Australia wide. The scheme has been in the trial stage in many parts of Australia over the last number of years and is gradually replacing other funding schemes Australia wide. In the last figures that were released about the participants that are currently in the scheme, it was stated that there are 142,000 individuals in the scheme. Of those 142,000 individuals, 29% of them are listed as being ASD. This is quite a large percentage and the scheme is yet to be rolled out nationally.

It would appear that the sheer number of individuals diagnosed with autism wanting to access the NDIS was grossly underestimated and the administrators are scrambling to "fix" the issue.

There have been several reports leaked to the media over the last month in regards to the NDIS changing the eligibility of Autistic individuals in being able to access the NDIS. If the proposed changes are put in place, it would mean that autistic individuals with a level 1 or level 2 diagnosis may find it much more difficult to access the scheme.

From a personal level, the NDIS has been instrumental for our family over the last three years in enabling L and O to access services such as multi-disciplinary therapy services and support services. Without the NDIS we would not have been able to pay for the level of support that both O and L have been receiving. And without the level of support that they have and still are both receiving, I doubt that they would be making the progress that they currently are.

I stumbled onto the most recent article quite by accident and as I was reading it, I could feel steam coming out of my ears. So here is my response to the author.

Dear Ms Shanahan,

For someone who has three adult children with health and subsequent disability issues, you are not showing any compassion towards others nor are you showing any knowledge about autism.

I am in a quandary as to which if your misguided, incorrect and downright offensive statements to address first.

There is no such thing as "mild autism." End of story. You either have autism or you don't. Mild autism is like saying someone is slightly pregnant. You either are or aren't. Autism presents differently from individual to individual. Yes the diagnosis of ASD is presented as a scale, but Autism itself is a spectrum. Individuals diagnosed with level 1 ASD still have struggles. The struggles may differ from those who have been diagnosed with level 3 ASD, but the struggles are still present.

We too sought and are receiving "practical help" for my children, as you put it, in the form of occupational therapy, speech therapy and child psychology sessions. Both of which are assisting my children to flourish both socially and in the education system. It's called early intervention therapy and the idea is that if a child receives therapy services early on in life, then they should not need as much support as adults. We are giving O and L the skills now that they will need as adults. We're setting them up to succeed as adults.

Both of my children were diagnosed in Western Australia and I can guarantee that we did NOT doctor shop for their diagnosis of ASD. We didn't choose to spend thousands of dollars on specialist appointments and assessments. It was a necessity and none of which we could claim through Medicare or through our private health fund. The assessment process took a good six months, three separate assessments and a lot of heartache. Times two. Why anyone would doctor shop to go through an assessment process amazes me.

And at no point during either of my children's assessment was "the parents level of stress," i.e. mine, taken into account. This does not form part of an ASD assessment. Period.

I have an idea Ms Shanahan, how about you sit in on an ASD assessment (from start to finish, so you may want to clear the next six months in your work schedule) just so that you can personally see what an assessment details. Keep in mind that most specialists are booked out for up to six months so you will be waiting in limbo until an appointment becomes available. You may also need to cancel plans with very short notice if an earlier appointment is made available. You will also need to factor in travel time, not all specialists are located in the same area so an hour appointment session may, in fact, take an entire day due to having to travel to and from the specialist.

You would have children like O and L go through a community education program instead of receiving vital funding and therapy. Pray, do tell, like what?????? And who will pay for such programs???? Who will run such programs???? Specialist sessions are not cheap. Where would community education programs gain the level of funding required to conduct intense therapy similar to early intervention programs for high numbers of children?

Without our amazing OTs and Speech therapists over the last three years, I highly doubt that my children would be making the progress that they are and continue to make. And without an ASD diagnosis, neither of my children would receive the support in school that they need.

You are incredibly fortunate that you received all the services that you did for your children. We receive very little financial assistance from the government. And many families that I have come to befriend through the therapy that my children attend, are in the same boat as my family. The small allowance that we receive, pays for fuel to and from therapy. I'd love assistance to pay for their various medications, very few of which are on the PBS list. We had to fight tooth and nail to receive the small amount of financial assistance that we currently receive.

Please educate yourself on autism before you next write an article on why Autism should be removed from the NDIS.

Yours Sincerely,
This very angry parent.

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!