My name is Alecia, and I am person who lives with disabilities.
I am also the mother to two children who have significant disabilities. My family live in Maitland in the Hunter Valley, and we have lived here for 2 years. Prior to this we lived in a small rural town in the New England area of NSW. Over time, we have come to discover that it doesn’t matter how much or how little access we have to therapeutic supports, without the correct support from the NDIS we are restricted and limited in how we can build capacity and be supported with our disabilities.
In addition to living with disabilities within my home, I also work within the disability sector. I have previously worked as an LAC, and when that job shifted toward cost cutting, political agendas, KPI pushing, disregard of NDIA policies and procedures, and quantity over quality, I left that position.
I am now a support coordinator, and while I find this job fulfilling in a way that being an LAC never was, I deal with participants of the scheme on a daily basis who are struggling to feel heard, feeling like their needs are being dismissed, and feeling like just another face in a sea of faces that are being pushed through the system so fast, by so many people their head spins. In some respects, the NDIS has made life easier and better for people with disabilities, in others, it has made it so much worse.
The capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment:
From both personal and professional experience, the culture that is represented within the NDIA is a culture of passing the buck, cost cutting, inconsistency, and dismissal. The main concerns about the culture of the NDIS are:
- There is a lack of consistency within the NDIA or its partners in the community (LAC’s) when it comes to defining what is considered reasonable and necessary, and considering NDIS funding for therapeutic and/or daily living supports, assistive technologies, or home/vehicle modifications. Often the reports are disregarded if the planner or LAC subjectively feel they know best.
- One of my clients have had to face the AAT for the supports that they need after the planner deemed the increase in daily living supports unnecessary and too significantly costly. This occurred despite the fact that there was a significant decline in their capacity to shower themselves, manage food and meal preparation, maintaining their home and participating in family life. The planner refused to adhere to the reports from the OT who indicated that there was a significant risk if the increase was not given and funding the same amount of support that they previously had when their condition wasn’t in decline. My client ended up facing the AAT and won the case for the increase in supports. My client indicated that the entire process was draining, demoralising, and frustrated.
- My son requires a wheelchair because he is experiencing significant mobility issues on and off due to a decline in his condition. We have spent 12 months doing the assistive technology assessments, trialling appropriate wheelchairs that take into account not only his needs, but also my disability, and my husband’s medical condition. He was scripted a wheelchair that met his needs, provided the correct support physically so he will be safe within the chair, and so that the chair will grow with him for the next 8 to 10 years rather than needing to be replaced within 2 years. We submitted this to the NDIS for approval and have received word that while they agree he requires a wheelchair for mobility, they feel his scripted chair is too costly for a child who ‘only needs to use it outside’. If they had read the reports and assessments correctly, they would have seen that he requires this support in more than one environment. In addition, we had trialled more than one wheelchair, and that there are significant risks involved with going with a cheaper heavier framed wheelchair for his father and I as it will cause injury to us while we lift it in and out of the car. He was declined his vital support because it was ‘too costly’. We are now in the process of fighting this with the NDIS. This is proving extremely difficult as the planner refuses to respond to my COS, myself or my OT. A formal complaint is being prepared about the conduct by the NDIS in this instance.
- During review meetings with either the planner or the LAC, there are often comments made to the participants or the participants family that contradict what is in the reports obtained by the therapeutic supports that indicate the exact supports that the participant requires for safety and capacity building. These comments are not based on any training in the disputed area, but rather, they centre on what the cost is to fund what is in those reports and how the NDIA won’t fund that specifically required support because it is too expensive. The focus in these meetings is often centred around cost saving for the NDIS, rather than being participant focused.
- My son has significant disabilities. His reports, indicate that he requires ongoing and frequent therapeutic input in order to build his capacity and maintain the progress that he is building. For years we have fought with the LACs for them to build in the supports that are recommended by his therapeutic specialists. We have been declined at each turn and only provided with what the LAC felt was reasonable for the NDIS to fund. During his last review I was assigned an LAC out of my LGA as I was an LAC, and it was a conflict of interest. During this meeting we discovered that the information in my son’s preplanning was significantly incorrect and hadn’t been updated in 6 years. We also discovered that someone had inputted false Pedi-CAT results that completely negated his level 3 autism diagnosis within the typical support package (TSP). Due to his DSM5 (currently required diagnostic tool for Autism) diagnosis, we have NEVER done a Pedi-CAT for him as it isn’t required. One of his previous LACs had falsely put this information into the preplanning information to reduce his TSP and bring his funding package down. This has had a significant impact on his ability to access the correct supports. His preplanning was completely deleted and redone during his last review and the TSP rose so dramatically that it was shocking.
- I am currently doing a lot of unfunded support coordination work for people who have been denied the support of someone who can help them manage their plan and supports. These people are vulnerable and being left as significant risk as a result. These risks include a lack of utilisation in plan funding being accessed, lack of
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safe and appropriate supports for daily living activities, being taken advantage of with regards to costing for services and supports, not being able to communicate what they require from their supports affectively, and a strong risk of isolation and/or harm as a result of the former all compounding. They have been informed that their LAC will help them manage their plans. However, they are never able to contact their LACs, as the LAC’s either don’t respond to emails or calls, or if they do, answer that it is not their area to help. Consequently, their plans are not being used, capacity is not being built, conditions are worsening, and people are being harmed as a result of the NDIS refusing to fund support coordination for participants because it is an unnecessary cost to the NDIS.
- There is lack of consistency within the NDIA and the LAC’s when it
comes to defining what is considered reasonable and necessary when
assessing parental responsibility and what is beyond the reasonable
expectations of the parent when faced with a child who has
significant and highly impactful disabilities. A parent or caregiver
often feels that they have no voice to stand up for themselves or
advocate for their own support when faced with a planner or LAC
who they report are often rude, dismissive, and condescending about
what they feel the parent should or shouldn’t be doing. Often the
parent or caregiver leaves a meeting feeling unsupported, unseen,
guilty, let down, and hopeless.
- As an LAC I had a 15-year-old female participant who had a severe intellectual disability and struggled badly with things like toileting and bathing, as well as dressing herself and eating. She was from a single parent family and her father was her only informal support. During the meeting he noted that he felt intensely uncomfortable bathing, toileting, and dressing his 15-year-old daughter. I built in hours for home base daily living supports to assist them as at 15, it is expected that your child should be well able to do these things without any assistance at all. It is also inappropriate for her father to be doing these things for her at this age. During the plan alignment meeting with the NDIS planner the support was declined because she felt that it was parental responsibility to do
these things for their child. I noted with them that it was appropriate to do these tasks when the child was under 10 years old. The planner would not be moved and when I implemented the plan with the participants father, I spoke with him regarding the outcome, lodged an immediate s100 for him, and I gave him the details for the AAT and advised him to make contact with them ASAP.
- During a review meeting for my son, I went into significant details about behaviours of concern, extreme family trauma stemming from some of these behaviours, the impact on our mental health as parents trying to navigate these behaviours and how they impact the rest of the family. I asked for additional resources to help us navigate this and was told by the LAC ‘it’s not the NDIS’s responsibility to parent the naughtiness out of your unparented child!’. I walked out of that review feeling like a failure and crying.
- The impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support, and services from the Agency:
There is a distinct feeling of dread that I feel knowing that my child’s plan is coming up for review. I know the fight I am about to have with the planner for the supports we need and knowing that I will have someone completely different to my last review who won’t know my child, their story. Usually, it is someone who doesn’t bother to listen to me or read the reports properly. Instead of feeling like I am walking into a productive meeting that centres on building my child’s capacity, I am walking in to, once again, justify my child, his disabilities and prove that he is incapable of ‘functioning like a normal child’. The continual fight with the NDIS for simple recognition of situations, for supports that are documented to be required in reports that we have spent hundreds of dollars on and countless hours of therapy for. We get told that we shouldn’t speak to them from the worst moments of our children’s disability, but from their progress. However, when we do this, we are told that we no longer need the support and our funding for them is cut causing my child to lose what progress they have made. The feeling is that the NDIS isn’t on the parents’ side and are more concerned with cutting costs rather than
- supporting us. This has significant impacts on our mental health and causes
- significant feelings of distrust in the NDIS.
This year I accessed the NDIS for my hearing loss. I applied the first time to be told that my hearing loss wasn’t significant enough to impact on my life and therefore not the NDIS’s problem. I went back to my hearing specialist who was dumbfounded as I have lost just under 70% of my hearing. We appealed this and added my recent diagnosis of Autism to the list and was granted access. It felt very demoralising to be told that I wasn’t disabled enough to warrant support. I also have fibromyalgia and osteoarthritis, which causes significant mobility issues, however, I have been denied supports for this as I have been told it’s not the NDIS problem as it’s classified as health. The problem is that Health have done all they can without success and have now told me they can’t do anymore as it’s now NDIS based. So, I am without supports, frustrated, struggling, and wondering what the point is.
When a participant feels that they have to fight and fight for the simplest supports, despite the reports and recommendations of the specialists, it causes frustration and resentment. Why should we need to continually justify just how disabled we are to a different person again and again to get a different response and different justification for the cut in support? The NDIS is meant to work towards improving the lives of people who have been marginalised by their disabilities. Yet, more often than not, it causes us to feel broken, unheard, and disregarded. This is what the impact that the NDIS culture has on people with disabilities.