Dear committee members,
I am writing to you to raise concerns I have about the proposed NDIS reforms, and I am sorry that this submission is being provided to you so late.
I am fearful that I will be one of those individuals who will have my supports dramatically reduced, or that, in time, I will be in time exited from the NDIS completely.
My life has changed so much for the better since I have been on the NDIS, and I know I am very lucky to currently have a very generous funding package. Such is my fear that I am actually concerned that by writing this submission that I may be identified and have my package cut, simply by describing to you what my funding practically means to me.
I have a complex psychosocial disability. I have struggled with mental illness all my life; when I was 15 years old I was diagnosed with BPD, Major Depression, PTSD, and Substance Use Disorder. Approximately 3 years ago I was also diagnosed with ASD (level 2), and over the past 2.5 years have
struggled with Atypical Anorexia, and Avoidant Restrictive Feeding Intake Disorder/Other Specified
Feeding or Eating Disorder. My diagnosis are all inter-related. Whilst years ago my symptoms manifested in a substance use disorder, in more recent years my symptoms have manifested into an eating disorder to try to manage my distress. My eating disorder only exists because of my ASD (having sensory issues, problems with routine, all or nothing thinking, black and white thinking etc), and because of my depression, PTSD, and BPD (e.g. impulse control, emotional regulation etc).
I was one of the lucky ones who was able to get onto the NDIS when it first started, and I have always been lucky to have a generous support package. Having the knowledge of this, in itself, has provided me a great sense of safety and security which benefits my mental health, because I know if I ever need it I can access support. Despite this funding being available, I have never used all of my allocated funding. If I knew my funding was limited, and I may not be able to access support when I need it, it would contribute to great anxiety and distress in my everyday life.
I am now 40 years old. From a service user’s perspective, it has seemed that as the NDIS grew that other publicly available mental health support services within the States and Territories have reduced. If I am exited from the NDIS, where I live (within a capital city) there are no other services out there that can replicate the supports I need to be able to live a life where I am able to be well, and contribute to society.
My psychosocial disability fluctuates. I can be very functional one week, and then could require a lot more support, or at worst, hospitalisation the next. I may be participating in study and working one week, and then requiring naso-gastric feeding in hospital then next (in the past this has also included attempting suicide as the next week after being “well”).
My NDIS funding has allowed/allows me to access the care that actually works for me. For psychosocial disability (or any disability) this can look quite different for two people - even if they have the same diagnosis. The NDIS currently allows this flexibility. The proposed changes I fear do not allow for this. I am extremely concerned - because from my experience government mental health services, inherently do not cater for this flexibility.
It troubles me that in the proposed changes, treatment access can more directly be defined by diagnosis. There is not the flexibility to look at the individual circumstances and get the bigger picture before deciding on what treatment is appropriate. This problem is further increased because funding packages will be allocated with less attention focused on looking at the se individual nuances. Every person is different. Every disability impacts every individual differently.
In psychosocial disability support needs also can greatly fluctuate. As I have described, I can be well one week, and in hospital the next. When I am in hospital, I often require an external support worker everyday. This support assists me communicate my needs to hospital staff, and to help me accept the treatment I require. Having this interaction with someone external from the hospital allows me the space to discuss difficulties I am encountering communicating with staff, or within that environment, to brainstorm solutions, and to help communicate these challenges and needs to the provider and to help advocate for me. When I am well, I do not require that same level of support. If the proposed changes go through I am worried that allocated budgets will not be able to adequately consider this, and that I will lose this flexibility.
My eating disorder is also inherently tied to my other diagnosis. However, with the proposed changes I will not be able to access the support I need to treat my eating disorder. Eating disorders, especially restrictive types, impact cognitive functioning. If I am restricting my eating, or eating inadequately, my cognition becomes more rigid. It becomes more black-and-white. I get more despondent, I feel more hopeless. My depression increases. My BPD and ASD symptoms also magnify. Ultimately if untreated or mismanaged in the community, I end up requiring hospitalisation. Hospitalisation is required because of the interplay between all of these combining factors/diagnosis. Not because I have an eating disorder. My eating disorder does not exist in isolation from all of the other diagnosis; so how can it be sound and effective policy to restrict access to this form of treatment because of a label?
My funding, as it currently stands, has and is continuing to assist me to develop the skills to participate in the community and live a life that is meaningful from me. Years ago, I hardly left the house and I was completely reliant on my aging mother. Over the past few years, using my NDIS budget in a way that works for me, I was able to reengage in study (in the past 2.5 years I have been able to complete 3 Certificate IVs), to start working casually, and to even step in to advocacy roles, including just recently becoming chair of my student association, and as a result of that gaining a position on that institutions board. These are the tangible benefits I have gained from my NDIS funding package. However, I am acutely aware that anything -no matter how seemingly trivial to others- can derail my health very, very quickly. Just 2 months ago this happened, and again I was in hospital for a few weeks requiring extra feeding support from a naso-gastric tube.
Practically my funding currently allows me to have a support worker, access dietetic support, access psychology, access exercise physiology, and access a support coordinator who can bring these services together, and ensure I am accessing services and service providers who actually work for me.
NDIS funding for Psychology
Being able to use NDIS funding towards psychology has meant that I have been able to work with providers who suit me. For many years of my life I was in the public mental health system. This system never helped me and many times actually hurt me. Due to my BPD diagnosis I was seen as an “attention seeker”, or “difficult”, when I presented to services. This label still impacts the treatment I receive in the public system. On a number of occasions when emergency services had attended after an actual suicide attempt (overdoses and attempted carbon monoxide poisoning) I was actually dismissed and sent home based on diagnosis alone. This is the reality of what treatment in the public system can look like for people with complex, chronic mental health conditions
Public services are also crisis focused/responsive, and generally designed for short term interventions. Public services, in my experience, do not provide regular (weekly or fortnightly) with a person for a longer term. This is what people with chronic and complex mental illness need. My experience has also been that in the majority of public mental health services, I have not been able to access support by an actual psychologist. This extra training and expertise can make a big difference.
Whilst psychological support can be accessed through a mental health care plan through Medicare (10 sessions), or via an Eating Disorder Plan if you can access it(40 sessions), this may not be enough for
a person with complex psychosocial disability to help them achieve and maintain a level of stability which can keep them out of hospital, or be able to participate in the community.
Public services are also in my experience unfortunately not comparable to what a person could get through a private provider. I have experienced systemic trauma via the public mental health system; I have experienced cruel and degrading treatment; I have also been turned away -multiple times because either I am not unwell enough to maintain treatment, or because I am too unwell, or because I have reached that maximum session number or maximum time period of engagement. In public mental health services, because of the pressures on the system, you do not get that choice of provider (you do not have the ability to find the right person who works in a way that benefits you the most), you also may not get the quality of service providers (many people who work in public system get burnout, or frustrated by system so more experienced staff generally move into the private system, and there is a significant income disparity so with these factors combining unfortunately many professionals leave the public system).
Funding for Support Workers
Looking in from the outside, without that individualised insight, it might seem absurd or a waste of tax payers money that I should have assistance from a support worker to take my dog to the park, or assistance from a support worker to attend a woodwork class.
Without knowing the personal significance or context I can easily see why that seems absurd.
For me when I have a support worker come and on the shift we go to the park and walk my dog this support allows me to talk about my week, what is consuming my mind, what is happening in my relationships, what is happening in my everyday interactions, what is happening in my everyday activities. It allows me to get this off my shoulders and form a strategy to manage the upcoming days. I struggle with everyday interactions with people. I often spend hours going over an incidental conversation I had with a random person because I am not sure how to take it, or am not sure what the meaning was behind it. This time also lets me plan how I might go about certain interactions that I will have over the coming days or into the future. Without this support I would not be able to study, work, attend some appointments, manage my health, manage relationships, participate in life. Walking calms me. My dog calms me. Parks calm me. The combination of these things allows me to be relaxed and comfortable enough to feel safe to be vulnerable to share my feelings, concerns, and internal distress.
I have an 80 year old mother, and no friends. I find social interactions and relationships incredibly difficult because of my ASD, PTSD and BPD. I have no other family member that can provide this support, and have no friendships that could provide this high level of support. I am not a social person. I have no one who could fulfill this role if I did not have my NDIS package which allows me a support worker. Without this support I would be in and out of hospital, or more likely dead.
There are very few other community services which provide metal health outreach support workers. The only ones that exist in my city will only provide this support for a limited period of time (usually 3-6months, if you are very lucky 12 months), and only exist for people in certain circumstances (e.g. homeless, just getting out of hospital, or only just diagnosed with mental health conditions and are an early intervention time limited support). They simply do not exist for people with chronic conditions, that require this ongoing support.
From the outside looking in without my unique personal lense -I understand a member of the public thinking why should I pay for someone get taken out to walk their dog in the park?
If I am exited from the NDIS I will not have this support available. If I am lucky and remain on the NDIS, then my ability to truly access an individulised package, a package that examines my specific
needs and takes this extra information and context into account when determining my funding, I fear will be undermined.
Community Participation
With my current package I have support to participate in woodworking classes each week. Again, I understand people may think why is this important? This is important for me to do because at the heart of all (or almost all) psychological treatments you are asked to examine what is important to you and what you value. This allows you to use these values to assist you and motivate you towards “recovery”. If you are not able to participate in activities that of value to you, if you do not have funding for community access or participation, you may not be able to participate in things that you value, and resulting from this mental health usually deteriorates. If mental health deteriorates then individuals may lose the ability to work, study, ‘contribute to society’, or it can ultimately lead to individuals placing a greater burden on society by requiring more crisis intervention and hospitalisations. Has it not repeatedly be found to be more fiscally sound to invest in well-being, in ongoing mental health support, rather than relying on crisis driven care? Proactive care can prevent more severe financial and personal tolls of acute mental health deterioration. and maintaining health (within reason) than spending. BUT this proactive care will look different for everyone. Within the proposed changes to NDIS the ability for individualised tailored support is being removed or seriously limited. It will vary from person-to-person what treatment and support works. Each person is unique. For one individual it could actually be a more productive investment of public money for them to have access to participate in a hobby once a week, than it would be seeing a psychologist.
Other important areas of support
Currently I am able to access regular support from a dietician -without this frequent, consistent support over the past approx. 2 years I have been in and out of hospital requiring naso-gastric feeding. The alternative supports that would be available to me outside of NDIS are an Eating Disorder Plan which gives me 20 sessions per year under Medicare funding, or otherwise trying to access some dietetic support from my State/Territory Eating Disorder Service. In my location there is generally a 6-9month waiting list for the Eating Disorder Clinic, their intervention program also has a cap on maximum service provision (you can only access 20 sessions with a psychologist, and access to dietetics is far less.
If I am unable to access this support through NDIS, I will be unable to access it all together. I do not have the financial capacity to pay for such regular interventions.
As I have discussed above my symptoms interrelate between diagnosis. I cannot just remove what may be seen as “treatment for an eating disorder” (not covered under the NDIS in proposed changes), from issues that arise with my food intake due to my sensory difficulties, my difficulties planning and with routines, my emotional regulation which impacts my eating, mood, impulse control, cognitive flexibility.
Nothing related to psychosocial disability is black and white.
How am I going to access treatment? If I cannot access this treatment, I have routinely required hospitalisations. I spent 9 months on a waiting list to access the Eating Disorder Program in my state/territory, and now I have utilised all my appointments with their service so am being exited. Even whilst in their program I was not able to access regular support from a dietician. Without this level of community support I have been in and out of hospital with feeding tubes -a few times only managing 3 days in the community before being readmitted.
How am I going to access the care I need?
Due to my mental health issues I have also had problems with managing exercise. Accessing an exercise physiologist is giving me the ability to develop exercise plans, and most importantly to develop harm minimisation plans which meet my current needs. My needs fluctuate, and my management plans need to adapt to this. Without access to ongoing appointments I am unable to create plans which can adapt and be relevant. These plans allow me, to get advice on how I minimise the risk of injury. When unwell, access to these appointments have provided me a framework to minimise the risk of significant injury -injury including the risk cardiac arrest. Without this type of intervention, I have been unable to regulate my mind and body, develop healthier habits/routines, improving my mental health and ability to improve my daily living.
With the proposed changes to the NDIS -if I am lucky enough to remain on it, am I going to be able to access this support? On the Disability Support Pension I do not have the financial capacity to afford this intervention on my own.
The future
To stay out of hospital I require I mix of support. When I am able to access a mix of supports that meets MY needs I have seen my capacity is grow. However, a relapse could be around any corner. That is the nature of my illness. My capacity and needs will also constantly fluctuate. That is the inherent nature of a psychosocial disability. That is not going to change. Without individualised funding packages, and REAL individualised assessments how the NDIS meets its primary purpose to provide individualised funding packages so Australians with significant and permanent disability can build skills, increase independence, and achieve their goals?
How can this purpose be achieved if treatment options don’t have the ability to be tailored to what works for that particular individual? The services/interventions which any one individual requires to achieve those goals will vary. If evidence can be provided (e.g. from a psychologist or psychiatrist) which shows that a particular type of intervention is being successful for a particular client, within reason, why should that individualised evidence be dismissed automatically because it doesn’t fit within a specific list of approved ‘treatments’/’interventions’? Isn’t a psychiatrist, psychologist, OT, or allied health professional in a better position to make that decision than a politician who has had no interaction with that person ever before?
If I am ‘diverted’/‘exited’ from the NDIS how am I going to live? My mother is 80 years old. I have no other family or friends. Even though I live in a capital city, there are no other services available which can meet my complex interrelated needs/treat my complex, chronic, interrelated conditions. Despite significant gains in my capacity, am I going to be left unsupported to regress to frequent, prolonged hospitalisations because of my diagnosis? Because my illnesses are complex and interrelated, will parts of my illness be left untreated or unsupported because I don’t fit easily within a standard box?
Whilst reforms are definitely needed to maintain the viability of this scheme, if funding decisions are made based on categories of diagnosis, treatment options are decided because of categories of diagnosis, or ultimately if individuals are exited from NDIS because of categories of diagnosis, is the initial aim of this scheme being undermined? Being human is being unique. A health and support system needs to have the capacity to meet individual needs. How are any of these proposed changes actively facilitating this? Am I going to be left behind?