Dear Sir/madam

I am the widowed primary carer, and mother of two severely disabled adult daughters aged 24 and 26. They both suffer from intellectual disability, Autism level 3, and my youngest has many more disability conditions which affect her life.

The NDIS has improved my daughter’s access to participate in the community, as it is impossible for me to take them both out in the community on my own as it’s irresponsible to try to control both safely out in public for one person. I also cannot leave either one at home by themselves even for a short period as it would be equivalent to leaving a toddler at home by themselves. A drop in funding or none at all would isolate us from doctors or anything medical, yany grocery shopping, basically put all three of us in a prison within the home, with no access to the outside world, basically imprisoning us with no crime committed. Our health would suffer as most of our regular doctors refuse phone appointments, we would be stuck using phone only drs who know nothing about us, no eye care, no dental care, the emergency department certainly does not cope with a visit from us. So basically the new rules would mean we are not considered human anymore just dirt. We are many generations Australian and I do not think my girls deserve to be treated like this. Or myself as I’ve done as much as I could possibly do to enable my daughter’s to access every therapy or treatment I had heard of way before the government or the NDIS assisted with anything like that.

It would appear that the Australian government wishes to demonize the disabled for requiring assistance or care or a family carer needing a bit of help. My daughter’s require assistance with basically everything, they need toileting, showering, dressing..food cooked …washing..cleaning.. al personal care help. They can’t cross the road on their own as even after decades of training with this they don’t have the capacity to see the danger of walking in front of a car.. yet the NDIS public service think they can decide what funding is required in a single meeting with a computer algorithm program. My daughter’s cannot even tell you where they live apart from the suburb most of the time.How does a computer program understand my daughters cannot toilet themselves or make food, or just to recognise they need help with everything when we have struggled to get your human staff to see it, I know I’ve been told they will know the questions to draw out the correct funding…sure and the Easter bunny exists…. We have already had so many ridiculous suggestions like university by one planner …both my daughter’s attended a special disability unit and had a very modified education plan…they do not have capacity for assisted employment either. I’m told that the planner will input my daughter’s answers into the algorithm..if you ask them a question for example …”are they the pope “?…they will probably say yes ….they don’t have capacity to understand even some basic questions. They constantly refer to information they have seen about the wiggles or the teletubbies as they live in their own separate world,… would you expect a small child to answer these questions??…no and you shouldn’t expect an intellectually disabled person either??? Because basically that’s what you are doing. They are not allowed to sign documents or drive because it’s unsafe, but it’s ok for the government to ask them questions for an algorithm they leave their lives in danger long term…with we are told no right to appeal.

It amazes me the stupidity of any human that would think intensive therapy would repair an intellectual disability…my daughter’s have had therapy for decades, long before the NDIS that I paid for, everything that was suggested I did..yet they only improve a very small amount and are still like small children in adult bodies.

It would appear that the NDIS will chew up money still by forcing us to use registered providers who are the biggest rip off in the NDIS, charging for a minimum of two hr shifts or charging admin fees..or site fees or for services they don’t provide .. We use independents now after many bad outcomes with registered companies, independents who I have carefully vetted, who actually know the girls needs and requirements… if they are only here an hour that’s all they charge and significantly less hourly rates than the organisations and companies. The only times my daughter’s have been at risk or hurt is with these so called reliable registered providers, who even when you prove they aren’t doing what they charge for nothing happens…the safeguards Commission is toothless, even when my daughter’s arm was broken and the registered company in question mismanaged the care and reporting nothing happened.

Then we move to the behaviour therapists, usually they have little to no experience with many issues or behaviours experienced by the disabled yet a lot of participants are forced to use this therapy without any gain by NDIS planners. That’s a waste of funding with no benefit to anyone except the provider of the therapy as your planners have very rarely read the reports produced… I have been asked quite a number of times are my daughter’s cured yet ??? Unless Mark Butler knows a cure for intellectual disability or Autism that we are all unaware of??! It’s always going to be the same for my daughter’s, I wish with all my heart they could be cured but logic tells a normal human that’s not possible.

We have submitted many Functional capacity reports which show my daughters need 24/7 care, even when they were toddlers, Disability SA advised me they would always need 24/7 care. Yet the Australian government think they have a computer program which knows better??? Yes we saw what your computer programs do with Robo debt… So I ask where is the responsibility going to fall when I die of old age or overwork or no access to healthcare …who will even know when I’m dead and my girls are alone in the house without carers as my parents are very old themselves and we have no other relatives.. or doesnt it matter to the government whether we are alive or not. Certainly appears that way these days…is the algorithm going to take responsibility or will you just hide things like this from the public…after all you already have the support of the press demonizing the disabled on a daily basis.

When does parental responsibility start to decline a bit, or are parents just supposed to go to their grave petrified that their children will go uncared for once they are gone. Imagine how it feels to take your final breath without knowing your disabled adult children were safe and cared for. Parents of the disabled have lived with that for years but before the NDIS the states had some form of comfort there ..now there is nothing but an algorithm apparently…

• Please realise there are many ways to save on the budget of the NDIS, such as clamping down on your registered providers charges and cutting back on behaviour therapy, clamping down on therapists who charge more to the NDIS than everyone else for therapy.

• It also surprises me how often politicians and reporters fail to mention how much goes back into the economy from the NDIS, the carers pay tax on their wages, they have money to live and shop because of their wage again going into the economy…

• Also the disabled person daring to want a coffee out or go to the cinema like any other person also pays GST on that purchase…again money going back into the economy. It would help if you made it clear that these community access funds are going to the cost of the carer only not for the coffee or the ticket, the disabled person is paying for that just like everyone else does.

All you are doing with this is leading to the pressure and money moving away from the NDIS to Medicare and in turn that states health system or mental health or prisons …the disabled will end up in hospital or mental health wards or prison…so basically we return to a Victorian era of care.. lock them up in an institution…throw away the key because disabled lives don’t appear to matter…well they do matter to the families and carers that love them…they do matter to the independent carers and therapists who really care. They should matter to every Australian who has a soul.