Please help Scott get his vital 1:1 NDIS funding reinstated!

Scott is a 45yo man who has CP quadriplegia, is blind and non-verbal.

HIs NDIS funding, which has enabled him to live independently for the past 4 years, has recently been decimated and re-categorised, losing the money to have 1:1 support, which he desperately needs in order to stay safe and live a meaningful life.

Without this care Scott can become very ill very quickly, and would end up fighting for his very life.

He has tried every avenue of appeal and review, and now has no choice but to urgently fight this decision with legal representation.

Can you help?

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Scott is an Aussie guy, wheel-chair bound with quadriplegia, blind and has epilepsy. He is smart, funny, endearing and sensitive - a loved family member and an intelligent being. His hobbies include studying space, traveling, church, reading books and watching movies like Star Wars, Lord of the Rings and Harry Potter! Scott currently is successfully living in his own rental house (not funded by the NDIS) and his own team of highly trained carers, which were previously funded by the NDIS.

Scott’s NDIS funding was recently decimated by nearly 2/3rds and has been listed as 1 carer to 3 people, based in a group home environment – something he does not want and with 1:3 ratio would probably not survive. He knows this because he spent 18 years in one (and suffered long-term neglect and a serious sexual assault, from which he is still recovering). This was before the NDIS, then he got out of that environment, just before covid hit, with his NDIS funding and his world opened up to him. Even though he was quite isolated during covid, his ability to watch and listen and learn via the internet and individualised support changed his life. Scott then became very ill in Feb 2021, from aspirating from a seizure and nearly died and spent nearly two months in hospital. He now requires much more specialised care - with specialised meals, increased aspiration risks, and extra vigilance required re protocols for mealtimes and pain and his many chronic conditions.

The NDIS has taken away his right to choose to live independently and with his own team of 1:1 carers. We have appealed the decision but didn't gain much in the process. Scott will have to go back into a group home, away from his family and his specially-trained support workers, if we don’t get this changed - back into isolation and lack of the 1:1 care that he needs, just to eat without choking, be moved without pain, be able to communicate at all and to stay safe.

Scott’s only choice for survival is to fight this decision. The NDIS lawyers are top-tier and fully supported to get out of paying the funding that Scott previous had and is 100% in need of. So, we need to lawyer-up too. We have found an expert lawyer in this specific area; expected costs between $9,000 - $31,000.

We really need your help – and when we win his case, not only will Scott be saved, his team of support workers – who will keep their jobs - will be saved too. We must highlight that this is happening NOW (it’s not some future proposal that we can object to later). So many people will have their lives ruined by this new NDIS guideline unless we fight it now.

Thanks so much for donating to Scott so he can fight for the funding he needs. 100% of your donations will go towards his fight for fair funding. His current funding level goes against everything the NDIS was set up for in the first place and must not go unchallenged.

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For more detailed info (for those who want to know more about Scott's story and the process we have already gone through with the NDIS..........)

Scott is a smart, intuitive, engaging wonderful man who is a quadriplegic, is blind and doesn’t speak. He communicates by tapping his left hand for “yes” and uses a comprehensive book with hundreds of words in it. He uses a hoist to lift him in and out of his wheelchair and a shower commode for toileting and showers. He requires two people to hoist him, and his sister, who lives with him – helps out every day. Scott is a Christian who attends church online every week, and he loves learning via books + docos. He loves movies and TV: Star Wars, Lord of The Rings, Star Trek, Big Bang Theory, Friends, Dr Who and is a massive Harry Potter fan!

Scott loves to travel to new places, has a fluffy white dog (Jimmy) and has his specifically-trained group of specialised complex/high-care support workers, who undergo expert training over many months in order to be able to adhere to his specific needs.

After long-term neglect, and then horrific sexual abuse suffered in a group home, (yes, he was raped), his family got him out and he started living in his own rental house just before covid hit in 2020. Since then, even though covid times were super-difficult, he has absolutely blossomed in his personality – studying Cosmology (has completed 7 different university-online courses), indulging his love of reading (audio-books) and movies, board-games, going to the theatre and eating out at restaurants.

Scott also suffers from Epilepsy (usually one big seizure per month) and in 2021 he suffered a terrible seizure where he vomited and then inhaled his vomit, and 24 hours later he was fighting for his life in the ICU - with Aspiration Pneumonia - which saw him in hospital for two months. But he survived, and though he’s now had many admissions (for pneumonia, covid, severe asthma and bad seizures) over the past 3 years, he is recovering well and – with 24/7 specialised care – he is still with us. Scott is recovering well, and living a happy life, but now needs modified meals, medical assistance) and constant 1:1 assistance just to eat safely and have his needs attended to.

But the NDIS is a different story! We love the NDIS because without it Scott would never have been able to get out of the horrid institutionalised “group home” that he was in, and be able to gain a real life and live independently. Scott is exactly the sort of person the NDIS was created for – severe physical disability, wanting to get out of the abuse and neglect of a group home, and start to truly enjoy his life again. We are so grateful for what he has been able to achieve with the NDIS’s support. It has enabled him - with a lot of support from his family – to start to really have a life, and even during covid lockdowns and illness, he has blossomed and known more joy and freedom and learning and hobbies and yummy nutritious food, and the internet(!) than he ever had before.

But……..

• In May 2022 Scott was granted a NDIS plan which met his care needs and gave us 2 years to manage his recovery from his serious illness. It only covered the basics for him (no funded car or spa or travel or new wheelchair or anything fancy, just sleep-over night support and 1:1 care), but it was enough.

• In Jan 2023 it was changed (and reduced) without notice. It was so rude – and without explanation, but we didn’t complain, we tried to make it work. But it wasn’t quite enough to stretch for the next 12 months, so after 9 months we were forced to apply for a little extra funding to cater for Scott’s increased needs, mainly for more attentive (active) care overnight.

• In November 2023, instead of granting him (or refusing him) this extra funding, they inexplicably decimated his entire plan – reducing his carer support to almost 1/3rd of what he previously had – and making it 1 carer to 3 clients – in shared accommodation (IE: demanding that he be put back into a group home). This is something they are considering doing in the new NDIS review – forcing people needing 24/7 support to go back into institutionalised living. Something being universally condemned by all those in the field – as it is completely against what the NDIS was created for - but it has already happened to Scott!!

• We appealed this decision (called a “Section 100” review) sending in all the raw data as evidence to why Scott must have “active” overnight care, plus highlighting that it is his choice to live independently (with his sister staying with him and training all his care-team), as well as submitting practitioner and doctor reports that the impact of Scott having to return to a group home would literally cost him his life.

• In March 2024 our cries for fair funding were rejected and the NDIS refused to change their position that Scott’s life is not “financially viable” for them to support him to live independently and safely with his own team of carers.

So, Scott’s NDIS funding has been slashed by aprox half – and they have removed all choice and control. The NDIS has directed that they will not pay for Scott’s 1:1 needs, they will only pay for 1 carer to 3 clients, directing that he be placed back in a group home. We simply will not let this happen! He will have to go back into a shared-care facility, away from his family and his specially-trained support workers, and back into isolation, depression and lack of the 1:1 care that he needs just to stay safe from aspiration/choking and treatment for severe asthma and chronic pain.

All of his team adore Scott (carers, practitioners, GPs and specialist doctors) and all are unanimous when they say he cannot go back into a group home. He would most likely not survive beyond a few weeks, not to mention his mental health devastation, and his family’s anguish at such an occurrence. Plus he would lose his team of support workers, and be forces into a situation filled with past trauma, and he is currently having nightmares and panic attacks just at the thought of having to return to this type of life.

There is no doubt that Scott’s care is expensive – but I would argue that:

1. The money that goes to his support workers provides a living for all those team members and their families – making Scott is an extremely productive member of society.

2. What is his life worth? He will not survive in such a place, as one person cannot look after 3 clients and give Scott the care he needs, just to eat and drink safely. Add to that the fact that he still hasn’t recovered from being raped and neglected in a group home before.

3. The NDIS was created specifically for severely physically disabled people - just like Scott – to get them OUT of institutionalised living and provide a system of support commensurate to their disability. But that is simply not happening – and we must fight this!

So, our only recourse is to go to the AAT (a national tribunal, like VCAT in Victoria), and have a hearing. The NDIS will lawyer up big time to fight us. Can you believe it? Instead of supporting Scott, as they are supposed to, they want to fight him for funding he previously was granted and is certainly entitled to! So – we need to lawyer up too – and this costs big money.

We have found a lawyer whose sole business is representing clients at the AAT to fight the NDIS. She is an expert in this specific area, but of course any lawyer is expensive; expected costs $9,400 - $31,400. Plus there is no awarding of costs at the AAT so we must pay the legal fees regardless of the outcome.

Scott and his family do not have the money to fight this without help, so we are reaching out to others who understand the outrageous situation that he faces and want to help.

Every cent we raise will go straight into Scott's account to pay his lawyer and any other expenses (getting doctors reports etc) to fight to reinstate the funding he was already allocated two years ago.

If you feel the NDIS has lost its way then please help Scott to retain his necessary funding and not just stay alive, but to have a life! We really need your help – and if we win his case, not only will Scott be saved, but his team of support workers will be saved too. Not only for Scott but for many others in a similar situation.

Thank you so much for deciding to donate to Scott so he can fight for the funding he needs. Please share this campaign with other people (through Facebook, LinkedIn, church groups, practitioner networks, disability providers and support groups).

We are happy to go public about this – about what the NDIS is doing – removing funding already gained, without explanation – and how it’s all happening under the radar. It is a pure cost-cutting exercise – regardless of all evidence submitted to show the funds are absolutely crucial. We must tell Scott’s story and set an example to stop this from happening to others.

Thank you.