Joint Standing Committee Inquiry
NDIS’s Independent Assessments
Name:
Date: 29 March 2021
Please note – I have submitted another two documents under my name
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Joint Standing Committee – Response to PB Consult Feedback PDF
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Joint Standing Committee Inquiry – Independent Assessments
My Background and Perspective of my NDIS Experiences: e I am an NDIS Occupational Therapist and mother of three children (ages 7, 15 and 15), all Participants on the NDIS scheme with Autism Spectrum Disorder Level 2 and other concurrent disabilities resulting in their complex presentations, since either 2019 or 2020. e My experience so far with dealing with the scheme on behalf of my three children, and engaging with the NDIS, is nothing short of stressful and re-traumatising. My view is that the proposed government changes to the NDIS, specifically the independent assessments, my experience and that of my children will be worse, not better.
Based on my positive response to Mestinon (medication), I also have Myasthenia Gravis, a chronic/permanent autoimmune neuromuscular disease that is characterised by fluctuating fatigue of the voluntary muscles, sometimes throughout the day, as well as from day to day or week to week. There is no cure and only very limited treatments with minimal functional effectiveness, so it is a Permanent Condition.
To date, so far as I am aware, no people in Australia with Myasthenia Gravis have been accepted onto the NDIS due to its ‘fluctuating’ nature, despite its similarities with lapsing and remitting Multiple Sclerosis (which has resulted in NDIS Access for many with this condition because the disability is more ‘visible’). It is extremely difficult to get a confirmed diagnosis for sero-negative Myasthenia Gravis, and the time it has taken me so far is 5 years without absolute confirmation. While NDIS state you don’t need a diagnosis to access the scheme, in reality you actually do need a diagnosis - and some diagnoses like Ehler’s Danlos or Chronic Fatigue are automatically EXCLUDED because they are fluctuating conditions, despite their permanency, and sometimes devastating impact on a person’s function.
The impact of Myasthenia Gravis on a person’s day to day functioning includes difficulty opening your eyes, moving your eyes or mouth or tongue, double vision, difficulties swallowing, chewing, and breathing (diaphragmatic and trunk weakness), doing physical movements to complete self-care or domestic tasks, mobilising within the community, driving, catching public transport, going for a walk, participating in sports or exercise of any type, sleeping (due to breathing difficulties), AND caring for your children let alone 3 children with disabilities, or indeed undertaking paid employment, despite treatments that are available.
Independent Assessments
Submission 350 - Attachment 2
As a result of the combination of my diagnosis, and my caring role for three NDIS Participant’s, I am no longer employable as I cannot perform my work consistently. I have been forced to become self-employed to earn any income, which I commenced in December 2020. So I cannot get help in my own right, and NDIS states that pretty much every task required of a parent of children with disabilities is considered “parental responsibility” whether it is excessive compared to my parenting peers with non-disabled children, or not. I am considered ‘not disabled enough’ to apply for NDIS support, let alone any other community based or financial support that might be available through the government. My condition is not enough for me to get additional supports for my children within their NDIS Plans to ensure the sustainability of my role as their parent and carer either. Carer burnout is very real, and sometime I deal with daily.
While my children gained access with Autism Level 2 relatively easily due to being on list A (automatic acceptance), the planning meetings were ~3 hours each and required that I recount memories that are difficult to re-experience without becoming distraught and exhausted for days afterwards. That is the result of my ‘complex trauma’ that has resulted from my experiences as a mum of three children with disabilities. There is nothing reasonable about the initial process as it currently stands in terms of the stress and retraumatisation it put me through. However, I accepted it as a ‘necessary evil’ because I had no other choice but to apply for access in this way and get through three Planning Meetings, as there was no longer any other disability service options outside the NDIS. I was also told in the beginning “You will only have to do this once – once your children are accepted into the scheme and you have your first plan for them, you won’t ever have to do this again”. What an absolute LIE! I have had to fight for Reviews of Reviewable Decisions since I started supporting my children in this scheme, and now I am going to be FORCED to participate in highly stressful, dehumanising INDEPENDENT ASSESSMENTS.
For the NDIS Planning meetings, my children did not have to be present to witness my distress, nor to hear me discuss all their ‘failings’ in terms of their functional limitations, as is required to prove their need for supports. For my children to hear this would have been incredibly damaging to my children’s self-esteems, let alone to my relationship with them, as I try not to focus on their ‘deficits’ at home. I cannot, in good conscience, have my children present at an Independent Assessment for those very reasons, let alone forcing my children to self-rate their functional capacity! I also do not think it is reasonable to subject ME to their Independent Assessments, given my history of trauma, current carer burnout, and the impact it has on my Myasthenia Gravis which is triggered by stress.
Wording_changes:
- Original: Participant’s Corrected: Participants’
I WILL NOT be allowing an independent assessor, a stranger, to observe my children or interrogate them, or to force my children to “rate their own disability and function” (UNBELIEVABLE!!) and yet this will mean my children will be ejected from the scheme because the independent assessments are mandatory, and I will have no other options to access disability supports at all within the community for my children, as they are now all gone or NDIS funded only. There is no HACC. My choice is between my and my children’s mental health OR accessing NDIS supports. I cannot have both. How is that reasonable? Or even Human?
Independent Assessments Submission 350 - Attachment 2
I should only EVER have to “prove” my children’s functional capacity and general needs ONCE – to get initial Access to the scheme – and for no other reason thereafter until the day they die. They have a PERMANENT DISABILITY. However, with the Federal Government’s proposed plans for NDIS reform, I will be required to repeat this stressful, humiliating and traumatic independent assessment process (for both me and my children) of ‘proving my kids are disabled enough’ on a repeated basis.
Since my children have been accepted to the scheme, I have had to seek Review of a Reviewable Decision (RORD) on all of my children’s plans at least once each since 2019, which have taken many months to occur (most recently I waited 6 months for a Review meeting in March 2021). Even as an Occupational Therapist working in the scheme, I cannot understand the type of information NDIS requires to ensure I can get my children’s support eeds met – how can other parents manage it without my background or knowledge!!!
Have not yet been able to get the SAME NDIS Planner to assess all three of my children, so they know the whole family situation when they are considering the supports needed. I believe it is reasonable to expect that a SINGLE NDis Planner would look at our whole family and the entirety of demands on my plate as a parent with three children with disabilities, plus the impact of my own chronic condition Myasthenia Gravis and Complex Trauma, before they state everything is ‘parental responsibility’ and deny all requests for additional s \support. It is beyond comprehension that so far, my children have only ever been looked at in isolation, and my carer statements have been completely ignored, including evidence rom my treating medical practitioners of how difficult I am finding it to cope.
The most recent review in March 2020 for my daughter has resulted in a bizarre outcome, is not even remotely correct, yet was basically told I was wrong even though I was quoting the Ndis website!!:
- applied for my daughters’ NdIs access when she was already aged 7, which was automatically accepted as List A condition Autism Level 2 in August 2020, and plan received early Sept 2020. She was accepted into the 7–65 age group for ndis.
- Following application for RORD in September 2020, took six months get Review meeting. The Rord Delegate stated my daughter should be under ECEI her first plan despite ecei being for children aged 0–6, not seven years old as she was. Pointed this out and was told ‘wrong’, despite the nDis website showing i was correct.
- If my daughter placed on an eceI (should find any day now), there is ‘talk’ that government extending the age range from 0–6 to 0–9 future (not). Government also planning remove diagnoses lists enable “automatic acceptance” such autism level two will mean my daughter have reapply Access Scheme transitions out of eceI, per letter Acceptance Received? Who knows because keeps changing rules rapidly can keep up!!!
- So quite probably if my daughter put on Plan next few days I make formal complaint about it incorrect – another thing plate distressing deal with.
Independent Assessments
Submission 350 - Attachment 2
The Tune Report recommended that the needs of Carer’s be better met by the scheme, and so far this has not been my experience at all. I am exhausted by the amount of time I spend managing three NDIS Plans. Time spent claiming spent funds from NDIS is the least of it – that part takes me 3-6 hours a week (not an insubstantial amount of time though when you are trying to earn an income in your business).
The challenging part is the time taken to case manage all three of my children’s needs, when there is a severe shortage of professionals available in my community (Moreton Bay, Qld), and a high turnover of health professionals and support workers in the industry resulting in me seeking new people constantly. I have had Support Coordination for two of my older children, and so far I am on my 5th Support Coordinator because of the high turnover, in 12 months!!! And frankly they don’t do much to help because their caseloads are so high; they haven’t got time to help you, so again, I am left on my own to cope.
At my RORD for my daughter, he said I have access to 12 hours of LAC support – that is an absolute joke! They don’t help you with ANYTHING; they refuse by stating they are not there to help you find services – but in my daughter’s case, I didn’t even get an Implementation Meeting for her first plan – I GOT NOTHING AT ALL, despite making a complaint to Carers Qld. Such a joke. So many promises unmet.
When I previously worked casually as an Injury Management Consultant with a Brisbane based Occupational Rehabilitation provider until May 2020 when I had to leave due to carer and work burnout, I was paid $60/hour casually to case manage Veteran’s rehabilitation needs. Now I am doing exactly the same work for my children on the NDIS, with the same intensity of workload, except with additional emotional toll and trauma-triggers thrown in, and I am doing it for FREE. How great is that for the government???? BUT, it reduces the time I have available to work for myself, as I would easily spend 2-3 days per week purely on managing my kids NDIS needs.
So where is the case management support to my family to reduce my stress and burden as a carer and parent of three children with disabilities? What I am doing is not a ‘normal’ parenting burden! But I am not eligible for anything except for Carer’s Allowance, which is around $70/week per child. It hardly covers my lost income does it?! NDIS also tells me I can’t get Support Coordination for my daughter because everything is ‘parental responsibility’, and Support Coordinators tell me that they “don’t do case management” anyway. So I have a massive unpaid job that is not recognised, remunerated or supported.
So I am begging PLEASE stop mandatory assessments because:
- I cannot participate in them because it will trigger my mental health trauma symptoms, and as well as my myasthenia symptoms.
- I will not put my children in the position where they are forced to participate in the assessments, where they are asked to discuss their functional failings and to rate them with a scoring system they cannot possibly understand.
- I will not be humiliated, traumatised or placed under ridiculous amounts of stress anymore, for a process where I have no choice and control whatsoever.
- I will not place myself or my children in a position of being forced to do an assessment where I cannot dispute the outcome in any way, because the
Submission 5 - Attachment 2
government claims they are not a decision therefore not a reviewable decision subject to a Review or AAT (despite the fact that SOMEONE must be monitoring and finalising the decisions for funding made on the basis of independent assessment data via an algorithm!!! redacted RESPONSIBLE FOR THAT!!)
What I want to see happen with regard to Independent Assessments:
- That the implementation of Independent Assessments AND any changes to the NDIS Act 2013 are STOPPED, to enable a full inquiry, and proper engagement with the disability community. NOTHING ABOUT US, WITHOUT US!
- That the Parliamentary Inquiry subpoena all the Submissions to the NDIS, and all data (raw and processed) of the Independent Assessment Pilots, as well as all evidence of the Federal Government’s so-called ‘consultations with the disability community’, and the Federal Government’s proposed legislative changes to the NDIS Act 2013, and THEN oversee an independent analysis of Independent Assessments and the proposed legislative changes to the NDIS Act 2013.
- That there is an independent risk assessment undertaken of the Federal Government’s proposed changes to the NDIS Act 2013, and into the proposed Independent Assessment process, to determine if there is likely to be risk of discrimination, harm or death to participants or their carers – particularly based on what we already know has occurred with Department of Veteran Affairs that has now resulted in a Royal Commission into Veteran Suicides.
- That there is an Independent Legal Review undertaken on how the Federal Government has made changes preventing the States from having a say in the development of new or changed legislation of the NDIS Act 2013 to determine if this should be reversed, particularly given the States partially funded the NDIS!
Thank you for your review of my submission. If you have any queries, please contact me on
Kind regards