I believe many of the obstacles and delays in the planning process are easily overcome when there is a culture of inclusion. I know I need a safe physical environment to be able to engage with any process to the best of my ability.
It is bizarre that the NDIA in dealing with people with disabilities does not embrace trauma aware strategies and reasonable adjustments which are the most basic examples of legal requirements to ensure equitable access for all.
My ideal planning meeting would be in my home. My family and trusted supports would add their observations and expertise to my stories and images of successes and challenges.
There would be a sense of continuity and celebration of my changing life.
We would reach an agreement about funding that matched my goals and aspirations. I think when the bureaucratic restrictions and personal prejudices are taken away, this kind of planning is impossible.
Instead of me constantly having to prove my worthiness and capacity to know what I need, how about NDIS staff are called upon to explain their decisions and justify the wages they are paid when they impede instead of enable me.
Intro
I have been a participant in the NDIS since 2013 due to a psychosocial disability relating to a trauma background and dissociative disorder. I live in the Hunter Region Trial site. My sister who has Down Syndrome lives in supported accommodation in this region.
I am an artist and theatre maker who provides inclusive arts opportunities and uses art to have a voice and enable others to find and use their voices for social change and wellbeing. Prior to the NDIS I had few supports except acute inpatient hospitalisations and the informal support of my four sons.
I welcome this opportunity to raise a number of serious concerns about the planning process with the NDIA and the negative effects this has had on me and my family. I have also experienced success and inspiration when supports to access the planning process are in place and when individuals in the NDIA listen and acknowledge mistakes.
The irony of the NDIS, which is a wonderful Legislation offering hope and practical assistance, being used to limit, distress and restrict those it is written for, by those who are meant to enable us is tragic. The same flawed processes and attitudes which have left us marginalised, neglected and abused are mistakenly or deliberately being applied to planning and funding meetings and decisions with disastrous, often unintended consequences.
My boys need hope that the NDIS will begin to work as it’s meant to, as much as I do. Each time my progress is interrupted due to bureaucratic indifference and judgement from or the ineptitude of “experts”, it takes months or years in some aspects to regain lost ground. I cannot live with this uncertainty and at the same time work towards future goals when the means to achieve them could be taken away.
A. The experience, expertise and qualifications of Planners I do not expect planners to understand all of the details surrounding specific disabilities, but if they are making decisions based on ignorance and not listening to a person’s actual circumstances, then the “one size fits all” mentality which the NDIS is meant to challenge will prevail.
In terms of psychosocial disability, Service-centric voices are dominating the narrative. I have been turned down by many Services for being too complex. How can a typical pathway or package help me?
Now when I go to a planning meeting, I know there is a possibility that I will be judged using an “evidence base” that does not include me and does not resemble supports I need or want, or that are effective for me.
These costly measures touted to streamline processes actually reinforce stereotypes and diminish choice as well as disadvantaging those in rural communities who may not have many available services, or those like me who do not fit any box.
B. Ability of Planners to understand and address complex needs I have had a number of planners. I imagine they all qualified for their job roles and have whatever qualifications they need, however very few have been successful in hearing me and enabling me to create a plan that will assist me to work towards my goals. They have had little understanding of my largely invisible disability. They have assumed because I sound educated I must have qualifications and all the social benefits that go with privilege.
When I spoke about ongoing distress, not being able to access mainstream supports, abuse and neglect, unstable housing, poverty and inability to care for myself, let alone my children, the resulting first plan I received, had a goal that I wanted to go to university. This was not my goal. I was only able to whisper my deepest wish for a dog. The planner who was doing her third Master’s Degree decided that was what I needed.
It is clear that tertiary qualifications and Government department work history is meaningless if planners do not possess necessary skills like empathy, listening, self-reflection and the ability to imagine. They also need to have a thorough understanding of the Act, rules and changing operational guidelines so that we are not limited by their ignorance or out of date information.
If planners do not understand the basis of the Act, which is that I am at the centre of my plan to the extent that I’m not included in conversations, I wonder what other basic and vital areas of knowledge are missing.
When planners assist me, they must acknowledge the obstacles my complex disability and life circumstances bring, otherwise the measures they see as reasonable can, and have had, devastating consequences.
I was let down by the individual planner’s egocentric view of the world. In basic terms, she did not understand that my goals and aspirations did not match hers. This dynamic is extremely harmful because in my case I was set up to fail, and had no means of staying safe and managing the numerous rejections I got from service providers who did not understand my complexities either. I was limited by their limitations.
C. Ongoing Training and Professional Development of Planners Who is the expert?
My son attended a review meeting with me, and he had told another manager who enquired prior to the meeting how they could help me feel comfortable: that they could help me manage the meeting with kindness and a cup of tea.
At one point in the meeting I was so upset with how I was being spoken to and their talk of me losing my psychiatric assistance dog (PAD), I had a triggered behaviour episode. This is when I feel so unsafe, I lose awareness and I involuntarily hit my head with my hands. It is always in response to a trigger from outside and is usually when I am trapped in a situation where there is a power imbalance. It is upsetting to see but it is part of my condition that can be managed when I am in safe surroundings and people are not threatening.
I became upset as I felt the Manager attending the meeting with my new planner was aggressive and seemed accusatory. I asked her what her understanding was of my condition, she said, “Well people get anxious, and you get a bit more anxious…” It is incredibly offensive and improper to minimise my serious condition and liken it to anxiety.
She was brought in as the mental health expert. She certainly did not understand trauma or even good customer service.
My son, seeing I was distressed asked if I could have a cup of tea. She refused. He asked for a cup of hot water so I could calm myself down and she said “No.” He had to leave me sitting there while he left to go to the nearest coffee shop to get a cup of tea so I could self soothe.
Everything about this meeting was inappropriate. I will never be able to enter that building again yet I have been told that is my only option.
Later when the Planner and I communicated via emails about getting a planning conversation done and my new plan started we agreed to meet at my house as planners had done previously. This was much safer for me and I was able to communicate more freely and show how I lived.
Just before the meeting he changed the arrangement. I was not allowed to have the meeting in my home as a risk assessment had been done and staff safety could not be guaranteed.
I asked a manager “How could they could deem my house unsafe without visiting?” She explained it was me that was the risk.
I held a working with children check, a police check, no criminal record, no history of violence, not even a loss of any driving points ever; and I was deemed dangerous without one NDIA staff member speaking with any of my specialists or giving me any indication that a risk assessment process was happening.
To be made to feel like a monster and unsafe for my tall, male planner who would be accompanied by a co-worker and at least one of my sons is laughable. I did not laugh. I was heart-broken.
I still feel upset that I could be judged so harshly because of an aspect of my disability, by the people who exacerbated my disability and triggered that survival mechanism because they did not make reasonable adjustments for me or treat me kindly. They are paid to do their job, and their job is to enable me, through funding supports for me, to work towards my goals.
E. Participant involvement in planning processes Imagine, after years of hopelessness, finding out that I had a legal right to have a meaningful life. I learned that I had rights and the Government was investing in me for my future and I would have the supports to become a truly contributing member of the community. The Planning Meeting is a huge deal. So much rides on the outcome, and yet preparation, if it happens at all, cannot help a participant know how their particular situation will be assessed and understood. I must set aside my fears and take part openly in a process which if it fails, I am not assisted to correct. The LAC or Planner does not have to be transparent and in the case of the LAC, may be completely ignored (as happened in my case) and a delegate who has never met me, using incorrect information from my file will decide if I can continue building a decent life or if I have to start again.
I may not be able to articulate it, but I know what feels bad. I know what works for me when I experience it. If I have to waste my time fighting stigma and poor decision making through impossible complaints systems, then I will not have to time or energy to experience life and find out what an ordinary (as it seems to have been downgraded from “meaningful”) life feels like. If planners do not believe me and my boys, or the specialists who work with me, and if they are guided by misinformation based on a medicalised model which never included people like me, they fail to see what I need and also they fail to see how much I am capable of, given the correct supports for the right amount of time.
G. The reassessment process, including the incidence and impact of funding changes
Planning meetings should be a chance to explore innovative ideas, celebrate successes and plan for vital supports. Instead, I have found them to be unpredictable, sometimes hostile, confusing, re traumatising and mostly leading to more processes to correct mistakes or shortfalls in funding.
Sadly, knowing an upcoming planning meeting can and usually does change everything is not conducive to peace of mind, building and sustaining informal and formal supports or having hope.
For my children now aged 27, 22 and 19 the impact of this uncertainty, fluctuating health due to service failure and the trauma of trying to support me to self-advocate and navigate systems which are inaccessible had direct and far-reaching impacts on their futures.
My two youngest sons struggled with senior high school despite being gifted students. One barely passed and the youngest had to leave year 12 last year due to mental health concerns. Both needed (and still need) counselling assistance. We were lucky they attended a school where their mental wellbeing was put before ATAR scores. The older son was at university doing a music degree and failed a number of units as he was looking after his brothers during a lengthy hospital stay I endured as one of many during the initial years of the NDIS.
Each hospital stay led to more trauma, including a four point mechanical restraint that still gives me nightmares. The fact that my sole carers, who needed care themselves were not assisted by the system, and were actually harmed by the process I was going through with the NDIA is terrible.
My youngest son was the last to leave home and so bore the brunt of the NDIA dysfunction at my last scheduled review in January 2018 and the impact this had on me. He has not completed his HSC which will limit his choices initially. Unfortunately the stress of funding cuts and losing a skilled Specialist Support Coordinator as a result of these cuts and ongoing service failure meant that the stress was too much for another son who has taken leave from his social work course.
I. The incidence of appeals to the AAT and possible measures to reduce the number
In 2018, a few weeks before my Psychiatric Assistance Dog (PAD) came to live with me, I had my scheduled review.
An LAC came to my home and met with me and my Support Coordinator. I queried not being allocated a planner, given the complex nature of my disability but wanted the review over with so I could focus on my new life with my PAD. At the planning meeting I was congratulated on achieving my goal.
We spoke about the lack of staffing due to market failure and the importance of continuity with my Support Coordinator, given the positive changes he was helping me make in many areas of my life. She proposed a reasonable plan and I was confident that my Support Coordinator could help me work out how to maximise the benefit I could get from the funding.
The plan proposal went to an anonymous delegate who slashed my funding.
Support Coordination funding was reduced to so low a point I lost my coordinator This was despite the LAC recommending seven hours of coordination per week. I was beginning a new, independent life with no children at home and my new PAD, and my capacity building funding was also ludicrously low.
By now, after speaking with me, the LAC had realised I was “too complex” for her support connections and referred me back to an NDIS planner.
J. The circumstances in which plans could automatically rolled over Allowing people to choose to have their plans rolled over if funding is adequate, or have small adjustments made would be helpful and enable people to plan and continue with supports.
It has taken me five years and numerous tries to find the right kind and number of supports needed to begin to manage areas of dysfunction.
This has only been possible since I began to fully self manage in August 2018.
If I had to be reviewed every twelve months, the high stakes would be so stressful, I would be unable to function.
After my third year in the NDIS, my plan was rolled over. This was wonderful as I had the continuity of the Coordinator and we were able to continue trying to put supports in place (with little success) and work towards my main goal to get an Assistance Dog.
The NDIA must understand that any meaningful change takes time. A myriad of complex influences and events over fifty years have shaped my experience. To destabilise me with half-measures and inconsistencies not only wastes time and resources, it puts my life at risk.
My allocated funding has already been deemed reasonable and necessary by the NDIA. I should have the choice to have it rolled over if I and my skilled team believe this will work best for me.
M. Other Matters Seven months after my planned review I was given my current plan with an increase in funding. I had not had a planning meeting.
My goals and description of my circumstances had not been updated. This plan did not reflect the changes in my life. It said I lived with a son and my Assistance Dog would soon be coming home - he had been there for six months, and my son had left home. They had included funding for upkeep of my PAD for two years, but had told me that it was going to be reassessed at my next scheduled review.
The paperwork said that funding had been approved so I wasn’t even able to challenge the decision, because it looked on paper as if I had won. Imagine if they told a wheelchair user that the vital technology they need was to be reviewed and possibly removed every two years?
This plan includes two things that are not linked to my goals or aspirations.
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Thirty hours for an OT to gain evidence for the Psychiatric Assistance Dog that is already living with me. They said that the NDIA had not followed its own Reasonable and Necessary processes. I now have to waste time gathering evidence for a goal I have already achieved instead of enjoying the benefits, challenges and changes achieving that goal would bring. I still do not understand why I am required to go backwards.
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The most disturbing addition is funding for a Behaviour Management Plan. I had not requested this. It does not match my goals or in any way help my situation. My counsellor agreed this was inappropriate. I am expected to work with a registered behaviour specialist who would develop a plan and report back to the NDIA on goals achieved. Whose goals, I wonder? When I emailed my planner to ask what this meant he told me “Behaviour intervention addresses changing attitudes and behaviour to improve the physical and mental wellbeing of individuals and their environments”