Thank you for the opportunity to present to this committee.

It is important that the amendment recognises the importance of informal supports well being and health, in order for them to be able to continue their support of the participant and be able to continue their own employment, other pursuits and their own health and wellbeing.

Informal supports wellbeing is recognised in the Rules and Supports for Participants 3.4 but is not always considered when developing plans for participants. Informal Supports should not need to battle through COC, S100’s or endure long fights at Administrative Appeals Tribunal for adequate support for the participant.

In the Amendment Bill the Clause 47A.3.b needs to be changed to recognise informal supports health and wellbeing as well as other evidence they provide, in addition to assessments.

47A.3.b “have regard to relevant assessments, conducted in relation to the participant”

This clause needs to add “reports and evidence” not just assessments as assessments should not be weighted above other reports and evidence

Reports and evidence may need to be considered that relate to informal supports capacity to care (EG Informal Supports Medical Conditions)

This clause needs amending to reflect the Tune reports recommendation and Rules Supports for Participants 3.4 so that the words “and their informal supports if relevant“ are included.

From the Tune Report

• 12 The NDIS Rules are amended to reinforce that the determination of reasonable and necessary supports for children with disability will:
• recognise the additional informal supports provided by their families and carers, when compared to children without disability
• provide families and carers with access to supports in the home and other forms of respite and
• build the capacity of families and carers to support children with disability in natural settings such as the home and community.

Note the information below from the AAT which indicates parents have to go to court for supports, when this should be encouraged in the planning and review process.

A relevant AAT Case

http://www6.austlii.edu.au/cgi- bin/viewdoc/au/cases/cth/AATA//2021/3890.html?fbclid=IwAR1WUvwEuurn1VtinO HhNmA-waeKUYeEuJ-IVIUmMg0GmVH77wkW fbtkCY

These are some experiences of participants and their informal supports

“We have needed 2 AAT full hearings 2 years apart before adequate informal supports were in place for a complex needs child. Throughout the review process it was regarded as parents’ responsibility despite parents’ medical and psychology reports and recommendations, as well as the paediatrician’s recommendations. Drs were cross examined over 3 days in court both times. We had funded legal aid and NDIA contracted a barrister. It was such a waste of money, and was a very damaging process. The support in the plan did not enable parents’ employment and study. The parents’ mental health was deteriorating and the older sibling’s behaviour and schooling was affected.” Anon

I maybe in this situation early next year need double knee replacement. My son requires 24-hour care and I am caring for him 16 hours a day 7 days a week. Have recently had a review asked for 6 months of full-time staff 24/7 as recovery and rehabilitation is extensive. Will know the result hopefully in next week, things are not looking good.

I was diagnosed with Breast Cancer Oct 2020, during one of Victoria’s lockdowns. While navigating my treatment, Surgery, Chemotherapy, then Radiation I lodged a COC. I had to get my MP involved after 8 weeks to get a result as my son was running out of funding. I was too unwell to look after him as he deserved. We ended up with a plan roll over for Core and less for Therapy. His Support Coordinator lodged a S100, after 12 weeks of calls and no response, the director of the service we use got involved. The service provider had stepped up and asked how they could help as my son had been in a Support Workers Car and she had an accident resulting in a fractured spine. Trying to get health services and the NDIA to work together to look after my son was the stuff nightmares are made of. Half way through Chemotherapy and not very well, I wrote a letter for the director which he forwarded onto his contact in the NDIA… another wait and I get a call saying the S100 had been cancelled because we hadn’t provided the extra Functional Assessment that they wanted. The one they forgot to tell me about! Three months to get the Functional Assessment organised, lockdowns aggravating the situation, lodged another COC because I was scheduled for more surgery and now have Osteoporosis, both these things limit my capacity to care for him as he deserves. My son was fast running out of funding. The COC was lodged in August, new plan landed the day I went in for surgery… my son was not granted the extra funds needed for 24/7 care while I was in hospital nor for the six weeks of my recovery. I can see yet another COC having to be done. The worst part was while the planner was sympathetic to my son’s situation and my

limitations, she admitted that we wouldn’t get much extra help because he still lives at home!

So I have two knee and one hip replacements and a right foot that I have been told can only be fused - leg bone to foot bone, bit in the middle missing along with break in right ligament which controls keeping foot upright. When I walk my foot now flips over so am walking on the side. Yep. Very painful. Between left knee and right foot not without pain. Radiation treatment to shrink an 11.5cm goutier in my chest that has moved the wind and food pipes over by 2cm. Two tumours in right lung, have radiation contrast dye to check, and had a gallbladder that became infected and had to have removed. Have been battling to have the correct supports funded starting in 2013. My son was in DHHS accommodation, another client came and decided to strangle him over a period of five months. Shocking cover up. Eventually all uncovered and had son removed and was supported by the current provide of choice. We applied for crises accommodation funding. The delegate at the time denied saying that he had a safe environment at the DHHS house. Not according to the police. Took ten months before, in the last review, the new manager sat in and because she was impressed that we had the legislation she approved the funding. From that to current. My son is in his own home, after he was evicted from 7 different group accommodations. I sold my beloved beach house and finally found a house more suited for him. However, delegate No 2 denied the provider of choice leaving my son without any support. The CEO provider of choice stepped up and provided the 24/7 support by himself for two weeks, no payment. Ndis commissioned a registered provider who walked out after 4 weeks! Next two registered providers in for six months before I had to terminate them. One overdosed him! Allowed him out onto the front street where he attacked a school bus, a person walking by, and a neighbour’s car?!!!

I have had to step back into the 24/7 support role between each of these so called fully trained registered providers. My knees and foot have deteriorated so much I can only stand for ten minutes, reducing how much care giving I am capable of. Early this year, going via GP was put into the outpatients list for knees/foot/ hip. I was informed that there was six months wait.

I just couldn’t wait that long, so off to a private orthopaedic surgeon. In the meantime the plan has come up for review. Planner was not interested in many things including gardening. An hour per month had been funded however as I can’t stand/walk on/across the grass or stand/walk on the soil/dirt I asked for an additional 5 hours in a 12 months plan. A debate as to why my son couldn’t do, why support worker couldn’t teach him. Why not? Huge risk factor if my son decides to throw whatever he has his hands on. So ended up with two extra hours.

I put in S100. The planner rang about another issue and said that if I didn’t remove S100 the reviewer who is supposed to be not connected with the participant, will change plan from plan managed to agency. I said I will wait and see.

Not sure if this counts as what you are looking for, but I fractured my back in a workplace accident last year and it made caring for my son a lot harder, relied on others to help transport us to appointments and therapy but mostly he just missed out. I struggle to cook and clean and spend quality time with him, as I can barely move.

The NDIA keep focusing on the carer’s health as a reason for why additional support should be provided by the health system, forgetting that the person who actually needs/receives any additional support is the PWD and they need that support due to their own disability. The fact that they have lost access to those supports as a result of their carer having a serious medical issue is actually irrelevant beyond establishing that their carer has a genuine reason to be incapable of providing those supports.

My husband has atrial fibrillation, an inflammatory lung condition, Fibro diagnosis 30 years ago (with suspicion that the “Fibro” is actually a sero-negative autoimmune condition due to symptoms/progression over the last 10 years in particular), Stage 4 bowel cancer diagnosed 4 years ago with inoperable secondary tumour in the liver that they’re about to try to burn out for the 4th time in the next few weeks, and substantial peripheral neuropathy due to the original chemotherapy 4 years ago. He is 68. His functionality is poor enough that he would have also qualified for NDIS assistance if not for the age limit. The NDIA last year decided that him being able to make a cup of tea, or heat meals in the microwave, meant he could do all the other household tasks as well as Care for me I’m severely limited physically (need a wheelchair for more than 20m-30m distance travelled) due to neuropathy - my husband can walk a little further but still can’t really manage more than 50m. Neither of us can do household tasks such as mopping/sweeping the floors, cooking, changing the bed, etc. My initial plan last year provided 2 hours cleaning per month, 1 hour gardening per month, $500 consumables, transport and 12 hours for OT assessments. I’d HAD 1.5 hours per fortnight cleaning from the local council - so 2 hours per month meant a 38.5% reduction in support. A consumable AT that I require to be able to type was refused on the basis that the TAB team “couldn’t see a letter from any doctors/allied health recommending it” according to the interaction notes that were on file that I got recently through FOI (there were 3 documents on file from GP, Pain Specialist, and OT who had stated it was essential so the TAB team hadn’t looked very hard. The OT was even one that the NDIA had hired during the access AAT case). A lot of supports such as meal preparation & delivery were not even mentioned as possibilities that could be requested. Support Coordination was refused by the LAC because they thought that “it would prove that I was incapable of self-managing my plan” (so they didn’t even pass the request through to the NDIA). S100 doubled the cleaning to 4 hours per month, and gardening to 2 hours per month. I later found out that the “standard” level of support for gardening is 2 hours per fortnight, so it was still extremely low. It caused huge problems getting gardening support established - the only reason I’ve managed at all is because gardener number 7 is charging me HALF the normal NDIS rate. The S100 reviewer denied the AT support on the basis that “if it is done

at your home instead of the normal location, it means it is a Covid expense that is completely unrelated to your disability, and therefore cannot be funded“ (which violates the Object & Principles of the NDS Act, where the participant is supposed to have choice and control over the delivery of their supports which includes where they are provided, and location was entirely irrelevant to the AT in question), and that if it was done in the normal location it was “unrelated to my disability” - which they then added that I’d “never submitted any medical or clinical evidence that I had neuropathy to the NDIA” - my entire access documentation AND the report that the reviewer claimed to have read provided exactly that evidence, and the neuropathy is why I qualified for the NDIS in the first place.

Which simply proved that the reviewer had absolutely NO idea what my disability was in the first place, and had read NONE of the submitted documentation including not having read the 3 documents that they claimed to have read. The new plan came through 2-3 hours after the very brief phonecall from the reviewer, who was nasty, scornful, asked about the impact of the neuropathy I had, then ridiculed the explanation of what was going on, etc during that short phone call.

I took the refusal of the consumable AT to the AAT for review. The day before the first phone conference, the Early Resolutions Team of the NDIA admitted that the support was entirely reasonable and necessary, had been fully supported by documentation that had been submitted for the original plan then fleshed out in my request letter for the S100, and they’d fund it in full. AAT could have been avoided entirely if the NDIA reviewer had actually bothered to do their job.

I have 2 girls on the spectrum, and diagnosed stage 4 bowel cancer. I was told by NDS that my cancer diagnosis would have no impact on their autism & that my request for additional support was denied.

I’m currently arguing with NDIS about Kitchen modifications. Initially they said my 70-year-old Mum should do all the cooking. Now they will give me a lower sink and accessible oven but refuse to find a lower bench so I can prepare the meals to put in the oven.

I have been diagnosed with Osteoporosis, I have a weight lifting limit of 5Kgs, the NDIA wont fund additional support for the person I care for, who is non-verbal and incontinent. A few nights ago he had a bowel motion in the early hours of the morning, he had to wait 4 hours the support workers shift to start before he could be cleaned up. He has the same human rights as everyone else and deserves better than this.