Submission 336
To the esteemed senate inquiry members, My name is and I am a level 2 substantial support needs autistic as is my near 16 year old. I wish to make a submission to the inquiry into the proposed ndis changes and wish to inform the senate to what these changes will do to my family. Both my daughter and I receive ndis funding and have only been on the program as very short time after my family reached crisis point. My plan is very minimal with just over $7000 a year so my plan isn’t exactly breaking the government’s bottom line. My daughter was and still is dying. Yes autism doesn’t cause death however co-morbities directly caused by autism does. Currently the ndia do not read functional capacity assessments so the proposed amendment of functionality will leave many unsupported as paperwork is left unread already, changing the legislation to need functionality assessments won’t actually change this fact, functional capacity assessments are actually currently asked for. How I know they’re currently not reading them is because my daughter’s planner admitted her paperwork was not read and the plan was made solely based on what the planner deemed appropriate not actually what was medically appropriate supports. My daughter’s functional capacity assessment lists autism as the direct cause to the co-morbity however to this day has never been acknowledged or added to her plan. This brings me to my second concern. The review being only with significant change. My daughter’s first plan was completely useless to her. There was nothing we could use to support her because her planner had not read the medical documentation and it was the planners opinion that built the plan and not actual medically based funding allocation that we needed we had to do a review straight away. If the legislation is changed to only significant changes we would have had a plan that was unusable and just sitting in limbo with funding in places she would never need. My next concern is the removal of 160,000 participants. I’m one of the ones who on the surface look ok and I’m quite over hearing how my disability isn’t worthy of support. I seem ok on the surface but under the false bravery I show the world is someone who will never be able to hold down a real job, someone who often is physically sick because my nervous system gets pushed to breaking point, someone who struggles to do daily tasks such as shopping, someone who has been in therapy over 10 years but will never graduate to not needing to attend and someone who is very isolated with minimal friends and no extended family support. I can not thrive, I’ve never been able to and with support I’m now looking at how to land and keep a job. All on the ndis have proven with a mountain of medical evidence that they have permanent and significant disability. These assessments are quite time consuming and costly. The participant has already proven they need support, taking the supports will cost lives. No one is on it that shouldn’t be. My next concern is the expansion of what is classified as parental responsibility. I ended up in and currently still am in carer and autistic burn outs. My daughter can not attend school as no school supports her needs so I’m having to home school, I also have her many medical appointments which are very costly and I have had to choose between rent, food or appointments many times. I also have had to choose which appointments to attend with time constraints as I can’t be in multiple places at once. We have no informal supports so my daughter having support workers take up the weight has literally been life saving for me. I can’t do it all. I’ve tried. Her appointments go beyond normal parental
Submission 336
responsibility. Her needs go beyond normal parental responsibility yet the proposed changes means that no supports will be given as it will be deemed completely my responsibility. I was at suicidal risk before ndis because I can’t do it all. Next is exhausted all options before being accepted onto ndis. This is highly problematic. This is actually already in place. I know this as my daughter keeps getting referred back to systems we have already tried, systems who refuse to treat her as she’s too complexed yet I keep getting told to take her back to places that aren’t available to her. We are already being told no to funding because of exhausting all means. The expansion to this is concerning because it won’t take into account whether the treatment is appropriate, affordable, geographical achievable or in my daughter’s case whether the service will even treat them. Then there is the no cure as permanent and significant disability is already the criteria so will they expect us to under go experimental treatments to try and cure us. I know last part may seem far fetched but the legislation changes are very vague on this and leaves us vulnerable to such things. Next is the registration of all providers. Ok this seems logical on the service however when you look deeper it becomes clear how problematic this actually is. My nephew had a significant amount of money stolen from his plan by a registered provider he is a level 3 with intellectual disability thus why no informal support with extended family, most of us are disabled in my family. Making everyone register will not stop the fraud however it will stop the small businesses and sole traders who are doing the right thing as the cost will put them out of business. For my family this will mean losing all our formal supports. Our formal supports come from a small business who not only is in this business for the love of disabled people but makes every decision solely based on the participant’s best interest. Most independent providers are in it for the love of the job and have a higher standard as their name is their business. Medicare fraud is actually at a higher percentage than ndis fraud. My next concern is cutting community access for all participants. Community access is a foundational part of ndis the actual core to it. Community access is there so no one is left behind locked away. It’s getting to appointments, it’s getting groceries in so they have food, it’s getting bills paid, it’s buying necessities like underwear, it’s being able to leave the house and most of all it’s restoring dignity to disabled people to be able to live. The media thanks to the government have done a great job making community access seem like all coffee and movies which the participant actually pays for but it’s actually just restoring dignity. Less community access means less medical appointments, less food in the house, bills being cut off due to late payment and most of all it’s a step backwards towards the time of institutions where the disabled were locked away out of sight and out of mind. We can not afford to go backwards in disability care. For my family cutting community access brings both my daughter and I back where we were. In crisis in a hospital as will be the fate of many families like mine. Through community access and a lot of patience from her workers my daughter is starting to thrive. There is so much I could say but I will leave my final concern with thriving kids. Now this won’t affect us however it will affect many families like mine. Currently there are no services available outside of the ndis however the proposed changes says it’ll be in schools etc. Currently many disabled children can not attend school as no schools fit the disability needs. My own daughter went through this so where does the implementation of such services leave struggling children with no school access and no other access to
Submission 336
supports? Then there is the fact schools are already overloaded with time and budget restraints. There won’t be enough time or enough funding to adequately provide the necessary supports each individual child needs. This already happens with current funding where the funding for a child gets put in a pooled fund to be shared with many other children including those without funding. Schools are not coping with the current disability supports, adding more to their work load is a recipe for disaster. Children deserve to be supported to reach their full potential. The government’s proposed changes will mean most disabled children won’t ever be able to reach even a fraction of potential. Reform is needed yes but these proposed changes means the very people it’s meant to support are actually the ones being left behind and in certain cases this will mean their deaths. Deaths are already happening with current cuts. I beg of you please don’t allow more to follow. Kind regards