The recommendation – which sits at the heart of the Committee’s proposed reform pathway – is one of 81 made in a report tabled in Federal Parliament last month.
The Committee released its report following a broad reaching national inquiry into the issues facing autistic Australians. It recommended the strategy be co-designed with autistic people and the autism community, and that it align with other national strategies - including the National Disability Strategy - to address whole-of-life needs.
Approximately 650,000 Australians are autistic, and the Committee found life outcomes for this group of people were unacceptably poor. Examples include:
“These are not simply statistics on a page,” said the report. “Behind each set of numbers are thousands of autistic children and adults who have been denied the opportunity to fulfil their potential and live healthy, safe and productive lives, as well as scores of families who have been pushed to breaking point.”
During its inquiry the Committee heard first-hand accounts of the devastating impact that a lack of support has on the lives of autistic Australians and their families. Key drivers of poor outcomes include:
However, the Committee said it was ‘encouraged by accounts of appropriately tailored support and good practices’ that had already ‘made a difference to the lives of some inquiry participants and the autism community more broadly’.
Co-Chair of the Australian Autism Alliance, Jenny Karavolos, welcomed the release of the report and said co-design was ‘an absolute must to enable effective and sustainable outcomes’.
“We strongly welcome a National Autism Strategy and support the Committee’s acknowledgment that generic disability strategies have not improved outcomes for autistic people,” said Ms Karavolos.
The Alliance has called for priority action on:
The landmark report - which includes recommendations regarding diagnosis, education, health care, housing, social inclusion, advocacy, research, justice, rights, and the National Disability Insurance Scheme – was also welcomed by Monique Blakemore, an advocate and mother of two autistic boys.
“While not every single autistic person or organisation will agree with every recommendation in this report, the critical thing is that we finally have in front of us a plan for providing autistic people with the educational, employment, health and social connection opportunities that are desperately needed,” said Ms Blakemore.
Labor Senator Carol Brown, the Committee’s deputy chair, said regardless of the result at the May federal election, the report’s recommendations must be adopted to redress the inequities faced by the autistic community.
“It’s now where the hard work begins, the report cannot be the end, but the start,” said Senator Brown.
Sources:
By Chris
This article is part of My Plan Manager's guest blogger series.
A note from My Plan Manager: The tips and information in this blog are taken from personal experience and may not mirror your own National Disability Insurance Scheme (NDIS) journey. If you haven’t yet read ‘Need help with the National Disability Insurance Scheme (NDIS)? Here’s where to get it (starting at pre-access)’, turn around and start there!
Once you’ve read that, come back to this article where Chris shares his NDIS tips from personal experience.
The process of becoming a participant in the NDIS can begin with a verbal access request, where a person with disability, their family member or guardian calls the National Disability Insurance Agency (NDIA) and asks to apply. Another option to apply for the NDIS is to submit an access request form. Both of these require supporting evidence from a treating professional.
Note: We recognise that everyone’s experience with the NDIS is different. However, you can contact a Local Area Coordinator (LAC) free-of-charge to help you apply as the first step when you are thinking about requesting access to the NDIS.
Once done, contact a disability advocacy organisation for support. Most advocacy organisations will help to unpack the terminology and jargon that is often used in the disability sector and having someone by your side who is familiar with those terms and phases really helps. Most advocacy organisations will do this for free.
If your application to access the NDIS is approved, the first thing to do is to go to a pre-planning meeting that’s usually held with a Local Area Coordinator – or LAC. LACs help NDIS participants to develop, review and implement their plans. During the 90-minute catch-up, the LAC will gather information and work with you to determine what to put in your plan.
You can ask your current providers to help you prepare for this meeting, and they can even join your pre-planning call with your LAC.
The process is challenging, but with patience and perseverance, you can make it through the experience.
If your application to access the NDIS is turned down, don’t panic. This decision can be challenged through a number of review pathways that you can find at the end of this article.
Once your eligibility is established, the NDIA will contact you to set up a planning meeting. During this meeting they will ask a series of questions about your experiences in regard to your disabilities, what disabilities you are diagnosed with and what services you think you will need. There may come a point in this meeting where they ask you to justify your needs, so it is a good idea to have someone from the organisation that helped you with the pre-planning meeting there with you for support.
It is always good to have someone else with you to take notes when you speak to the NDIA. If you’re not able to have a third person with you then politely tell the NDIA that you can’t talk at the moment and arrange a time when you can have someone else take part in the conversation. Do not take no for an answer to this request as they cannot force you to talk to them.
After the meeting, the NDIA will present you with your NDIS plan. If you’re happy with it, that’s great. If not, you have 90 days to request a review. Often people aren’t aware of the 90-day limit, so keep it in mind, because you have a time limit to challenge the NDIA’s decision. If you can’t resolve the matter by way of a review, this is where legal aid and/or the Administrative Appeals Tribunal come in. These are both free services and both have specialist teams that deal with matters relating to the NDIA.
Both options have resulted in positive outcomes for me, so I leave the choice to you. Just remember, these people are on your side, so always be polite with them.
You can find more information about getting a decision from the NDIA reviewed here: The lifecycle of an NDIS plan
This month on Kinora, our online community for people with disability, their supporters and service providers, we’re exploring eligibility and access to the NDIS. If you have questions about applying for the NDIS or this pre-planning phase, log on to Kinora to connect with a coach who can point you in the right direction.
Hi I’m Chris. I’m a 44 year old Autistic person. Originally from California, I ran away to Australia as soon as I could. Raised in the country, life wasn't easy with an invisible neurological difference, especially when that difference wasn't even widely known about. On top of that I didn’t even get a diagnosis until I was 39 years old.
By Chris
This article is part of My Plan Manager's guest blogger series.
This is another sensory blog. This one is related to sound. This blog is about some of the auditory issues such as hearing difficulties that Autistic people often struggle to cope with.
Let’s get started with an especially difficult condition called Auditory Processing Disorder. The modern thought on the condition is that the brain of an Autistic person is unable to process the enormous amount of sound of every day life. This is incorrect. The cause is that we hear absolutely every sound around us which makes it impossible to pull the single thread of sound from the ball of tangled ball of sound-yarn. I myself have been diagnosed with Auditory Processing Disorder and when it is noisy it’s hard to understand a person talking right next to me but when it’s quiet I can hear individual sounds over a distance of more than a kilometre with relative ease.
There are many issues with my having a heightened sense of hearing: I can’t stand fireworks, parties, night clubs, or anywhere there’s loud noise. That’s almost everywhere outside of my own house so most days I’m content to stay home and enjoy the peace and quiet of my single room flat. I can’t even tolerate living with other people.
Some helpful tools include ear plugs, noise cancelling headphones, and living in the country. The headphones actually work very well. It doesn’t cancel out noise 100%, nothing can do that, but it reduces the noise to a more tolerable level. That makes things much easier to cope with out there in the big, bad world. The best part is they come in an incredible variety of styles, sizes and colours. The down side is the better ones can be very expensive, up to $500+ in Australia.
If you’re on the National Disability Insurance Scheme (NDIS) for Autism, the noise cancelling headphones can be purchased through cooperative vendors or reimbursed through your plan manager or directly, if you’re not plan managed as they relate directly to treating Autistic auditory difficulties.
Alternatively, there are Autistic people whose Autism makes it difficult to hear the sounds around them or even cause deafness. This is what I would call Auditory Processing Disorder if I had the power to change the way things are labelled. These are the people who cannot hear because they’re Autistic. It’s the other side of the coin from having over-sensitive (or heightened) hearing. There are treatments for this as well, such as hearing aids.
Both conditions make life for Autistic people more difficult than it should be. Loud neighbours are a special kind of hell, especially the type that bring people over and have impromptu ‘gatherings’. If you live next to someone with Autism do show them a little courtesy and keep the noise down.
There is a minor caveat – Auditory Processing Disorder can exist without the individual being Autistic. Though it is very rare for this to occur, it does happen from time to time.
Hi I’m Chris. I’m a 44 year old Autistic Person. Originally from California, I ran away to Australia as soon as I could. Raised in the country, life wasn't easy with an invisible neurological difference especially when that difference wasn't even widely known about. On top of that I didn’t even get a diagnosis until I was 39 years old. Looking back I now realise how miserable I was and how badly I was being treated by everyone. Looking forward I want to leave behind some small piece of myself that maybe, if I'm lucky, might make a positive impact.
By Chris
This article is part of My Plan Manager's guest blogger series.
Today’s blog is the start of a series covering the sensory issues of Autistic People. Most of us have heightened senses that can cause a problem dealing with everyday life. It’s a large topic and could easily cover far more blogs than I have time to write, so I’ll focus on the five main senses (there are far more than five but I’m keeping it simple).
As usual I’ll be writing from personal experiences. I’ll start off with writing about my extreme sensitivity to light. I wear the darkest sunglasses I can find (the Cancer Council has the best for the price, in my opinion). Even with these on, a cloudless Australian summer day can be so bright I have to walk around with one eye closed (fortunately nobody can see my eyes behind the glasses).
My sensitivity to light is so strong on some days that even the light of a full moon can be ever so slightly too bright.
As with everything related to our senses, the level of sensitivity fluctuates.
However, my senses seem to be getting sharper as I age, instead of getting duller as one would normally expect. Sometimes when it’s overcast, I don’t need to wear my glasses, but I always keep them with me in case the sun breaks through the clouds.
There are some wavelengths of light that affect me emotionally – the setting sun shining between the earth and an overcast, rainy sky is my favourite light of all.
It’s a mystery to me why my brain processes light the way it does and why it changes the way it processes it, or what triggers that change and its various intensities.
Since sunglasses are basically Personal Protective Equipment for me and many other Autistic People with the same sensitivities, I have sometimes had to wear them indoors – especially if there is bright lighting. For this I have been called names, endured cowardly passive aggressive bullying, and even had to leave a class because the people running the art school were so narrow-minded.
The point I’m making here is it’s tough just trying to get by when small-minded and ignorant people make life more difficult than it already is for someone just because that person is trying to protect themselves enough to live a semi-normal life with as little pain and discomfort as possible.
The same sensitivities that make bright light painful make things like eyedrops and contact lenses next to impossible to endure. However, this ties in more with my oversensitive tactile sense.
Don’t get me wrong, it’s not all bad. I can tell when a picture is off centre by a little as 1mm (literally) as well as ‘eyeballing’ whether something is level when building something; that in particular is extremely useful as you can imagine.
So as with most things Autistic, there are good and bad aspects. I try to embrace the good and cope with the bad but it’s not easy.
Hi I’m Chris. I’m a 44 year old Autistic Person. Originally from California, I ran away to Australia as soon as I could. Raised in the country, life wasn't easy with an invisible neurological difference especially when that difference wasn't even widely known about. On top of that I didn’t even get a diagnosis until I was 39 years old. Looking back I now realise how miserable I was and how badly I was being treated by everyone. Looking forward I want to leave behind some small piece of myself that maybe, if I'm lucky, might make a positive impact.
