15th December 2022
SUBMISSION TO JOINT STANDING COMMITTEE ON NDIS
Firstly thank you for the opportunity to be heard. My name is I am the mother and primary carer of who is 28 years old and has severe Autism (non verbal), and Intellectual Disability. I would like to inform you about our recent experience with NDIS plan review and subsequent AAT reviews and the negative impact it has had on myself and my family.
Background snapshot:
plan was due for the usual 12 month review and we asked for some extra funding so could spend more time out of the family home and extend his transition process to becoming more independent and improve his social and daily living skills. has great difficulty with change and new routines and can display quite challenging/violent behaviours when in unfamiliar surroundings. Our thinking was to take ‘baby steps’ to make this transition at a comfortable pace and allow his own time to cope. had been staying at a group respite home for one weekend a month which he now thoroughly enjoys (after a couple of years of getting him to settle by introducing various strategies, educating staff and making the visits a little longer each time. He now stays Friday 3pm to Sunday 3pm. When first went to respite house he was like a wild animal. He would scream, claw at the door, and constantly tried to escape. He wouldn’t engage with staff or other clients. But after LOTS of blood, sweat, and tears (literally) he now loves to go and pushes us out the door. He has developed such a lovely relationship with the staff and has his version of ‘friends’. He smiles, becomes very animated and excited when he knows he is going to His visits have become such a major part of his lifestyle and social experiences.
When our review was completed in December 2021 we received the news that not only had we not received the extra funding but funding had been reduced. To say we were devastated is a massive understatement. I immediately asked for an internal review and was told we needed to provide more evidence but had no idea what that meant nor were we given a timeline to have it submitted. After two weeks we then received an email informing us that the original decision was deemed to be correct and that was final.
I can honestly say I haven’t felt that emotionally distressed, confused, bewildered, and overwhelmed since we received original diagnosis. I called NDIS to talk to someone and get some clarification and answers to my many questions however it went to messagebank and I’m still waiting for a return call. I feel that NDIS need to be more available and approachable as we as parents/carers are exhausted and often confused by these unfamiliar processes. We don’t have time or the energy to be making call after call, our time is very restricted and precious. They need to be clear and concise as to what information or ‘evidence’ they require and let us know what the timeline is. LAC’s have always been
- good but anyone above them are quite rude and abrupt.
- At our very first NDS LAC meeting
we were told to live the life you imagine and needs would all be catered for. What a lie!
Saying something like this to physically, mentally, and emotionally exhausted parents and
then taking it away is so cruel.
( father and my husband) and I work opposite shifts so one of us is always home to care for
but this has really taken a toll on our marriage as we rarely do anything socially together. We have had one family holiday (without in 28 years. This is what we were hoping to achieve with extra funding. would be so happy having his regular breaks away from us (and learning new skills and independence) and we have a break, recharge our batteries and continue to care for as long as we can. Therefore saving the government money I would have thought. Is it not in their best interest to keep in the family home as long as possible? I contacted RIAC Bendigo Advocacy Service and I’m so thankful that they were able to assist me otherwise I would have been completely lost. from RIAC has assisted me through the entire process of two AAT hearings and email correspondence between the parties involved. I really believe that I would’ve had a total mental/emotional breakdown if it hadn’t been for I was so mentally and emotionally overwhelmed by the whole process. I am just a mum who is trying to do the right thing by my son and the rest of my family (I am married and have 3 other adult children who are as equally important as Life is difficult enough without having this added stress which went on for almost 10 months. The fact that lawyers were involved was very intimidating and frightening. I’ve never had dealings with lawyers before and it made me feel like I had done something wrong. I felt dehumanised, humiliated, and like I had to beg for the extra funding. After each meeting I became physically ill and had to have time off work to recover. I often couldn’t sleep and became very anxious, nauseous, and had constant headaches. It really impacted my mental health in an extremely negative way. I have always been able to go to ‘get on with life’ and ‘pretend’ everything is ok (even though it’s mostly not) but this process wrecked me. It gutted me to my core. I was often emotional at work and around friends and I hated that. My children commented that ‘I wasn’t myself’ and were quite concerned for my mental health. I have put on so much weight and I’ve lost faith in the world. My GP is concerned about my health and well being and states I am suffering from extreme carer burnout. None of this seemed to matter to NDIS and was completely disregarded. I never ask for anything really and to feel like I had to beg was extremely distressing and dehumanising. I just wanted to be happy and enjoy himself as best he can. He is a year old man who deserves the right to live HIS life on his own terms. He can’t verbalise what he wants but we can read his body language and expressions and we know this is what he wanted, He also deserves the right to go where he wants when he wants and where he feels safe, respected, nurtured and secure. He deserves to spend enjoyable time with his peers and have a social life in whatever form it takes. It is so important for us to know and trust his carers as
is non verbal and wouldn’t be able to tell us if he was exposed to violence or neglect. We also need to educate his carers to ‘read’ behaviours to prevent escalation and minimise the risk of meltdowns/outbursts. I felt the NDS were trying to make everything difficult and prolonging the process by asking for more and more information/evidence/documentation/reports even though most of what they were asking
I felt like they thought if they kept making me ‘jump through hoops’ I would just give up. Believe me at times I really felt like it as I was so exhausted. Because I wasn’t sure what information they wanted I got all of reports/assessments from his original diagnosis at two years of age as well as all of his OT, physio, speech therapy, behavioural, ID, incident reports and assessments from all through his life and I found this extremely traumatising. I relived the grief and feelings from those times which was when was really ‘bad’. We have worked so hard for so long to improve behaviour and have come so far and I really don’t want to go back to those times as they are really negative and gut-renching. After questioning our NDIS LAC she suggested that I get a Functional Capacity Assessment for which I did straight away. I feel if NDIS let me know exactly what reports/assessments they required at the start of all of this it would have saved a lot of heartache, stress, and time (and money). However even after all of this NDIS requested more information which had already been covered in this assessment. I feel that the cost to NDIS for all of the ongoing correspondence and meetings would’ve been comparable to the extra funding we were asking for. I felt harassed and belittled by the constant requests which didn’t seem to make any sense. We eventually came to a mutual funding agreement but it has taken a huge emotional and physical toll. The thought of having to do all this again in two years time is too painful to think about.
The main points I wish to convey from my experience is that NDIS need to be aware and respectful that we are just parents/carers, not trained professionals who know the ‘language’ and processes. They need to be more precise in what they are specifically asking for, provide timelines, be more accessible, provide explanations and assistance if needed. NDIS need to realise that re-living past experiences is very painful and traumatic and should be kept to a minimum. If an adult has had a severe lifelong disability its not going to go away and please realise the parents/carers of that person has been caring for them day and night for their entire life. Every single day is a struggle but the love we have for our child is what gets us through and motivates us to keep going.
Yours sincerely,