Submission 2616 (Family or carer experience)

Submission 2616

Submission on the NDIS Amendment Bill

Name:

I am a parent carer of two children. I am in paid work 4 days per week. My eldest is 6yo and he was diagnosed Autistic at 3yo. has a Pathological Demand Avoidance (PDA) profile, clinically assessed anxiety, Avoidant/ Restrictive Food Intake Disorder (ARFID) and encopresis. ’s presentation and high support needs mean he could not access mainstream education. He does not have an intellectual disability and Autism schools have a wait list and are set up to support children with a PDA profile. My partner and I both work and attempt to homeschool . I will centre this submission on and our family’s experience and concerns.

1. Introduction / my connection to this issue I had assessed for Autism just after he turned 3yo. This was after expressing deep concerns for ’s development on multiple occasions with the Maternal Health Nurse, GP, Childcare educators

   and a Paediatrician. Please note, when was 2yo I had my other son . A time when as a

mother and family, you would expect typical experiences of parent playgroups, Rhyme Time at the library and play dates (just to name a few). In my case, it was a time of overwhelm, isolation, exhaustion, research, advocacy, admin and appointments. I share this brief information to set the scene, provide context behind why this submission matters to me, to and to my family. I have been navigating ill informed, expensive, inaccessible, fragmented and bureaucratic systems for most

of       ’s life.       ’s life,       ’s childhood, my motherhood, have become institutionalised. We

experience the pain, fear, isolation, confusion and dehumanising impacts of possible and actual policy changes like this.

I write this the night before submissions close. I write this when my boys are asleep (one has already woken twice in need). I write this from 9pm, after a long day, a long week. I have fear and exhaustion in abundance and it is too much to sit with and needs to go somewhere. This is where I choose for it to go before I try to go to sleep and wake up to the reality of tomorrow.

2. My overall position on this Bill I have serious concerns around the Bill. There are concerns about how sustainable the NDIS is, the rising costs and apparent fraud within the scheme however:

• the government is making intentional decisions to not fairly tax billionaires and corporations

• the government isn’t putting in safety measures to protect the scheme (which saves lives) to expose and prevent fraudulent activity

• In a time when we have more knowledge and awareness of neurodevelopmental difference and how this intersects with physical and mental health, relational health, economic participation, education and full citizenship, we are likely to see one the most catastrophic risks to the safety and wellbeing of children, adults and families/ carers of our modern time.

How can we as a nation claim to care about children, human rights, social cohesion, the economy, the loneliness epidemic and suicide rates (just to name a few) and then have these changes pass? How? The punitive, sterile and ableist nature of the proposed changes will be harmful on many levels. There will be human collateral damage as people already struggling to survive will have more hoops to jump through, less self-determination, less social engagement, less money, less energy and less time. Healthcare and emergency departments, schools, family services, community serves and crisis services which are already stretched will be expected to somehow cope with the increase in demand and complexity of presentations.

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Submission 2616

Where can people, especially children go if there are no established and resourced programs for them and families to go to? We are scared because the community has spoken, advocates and allies have spoken and no one is listening. This is telling us, we’re not listened to now, we will definitely not be listened to in the future. We want this insurance scheme to work. We need it to work to strengthen health and wellbeing outcomes for participants and for people in future, if they ever need it due to acquiring a disability. Our country is rich, our country is educated, our country has potential to flourish in this modern and chaotic world, why would we compromise this with these changes that strip people of the rights and dignity they deserve?

3. My key concerns Administrative burden

Raising a child with disability, complex and fluctuating needs all whilst raising another child with unique and emerging developmental concerns, requires a lot from us as parents. We as parents are also in paid work and homeschool our eldest, . We do this with minimal and broken sleep, every day. We do this with our own health challenges. We are constantly managing, researching, collating, communicating and advocating across multiple systems. As parents, as a couple, we are case managers completing handovers whenever possible to ensure good enough care for our sons. This should not be the case but it is. Moving forward with the proposed changes, we risk this going from barely managing to the possibility of one or both of us needing to leave paid employment.

We have already had ’s plan “rolled over” twice since commencing on the scheme. Both times we prepared for the review by coordinating increased appointments to complete the relevant assessments and reports through the care providers. This meant more co-ordination, more planning and organising, more admin, more time away from work to access the appointments, more

preparing         , more support for       ’s engagement in those appointments to then have the plan

rolled over. We do our bit, we follow the process to then be told we do not need to do anything, yet. This is one of the most exasperating parts of being on the scheme. Getting any correspondence from the NDIA is anxiety inducing. Engaging in the NDIA administrative processes is demanding on our energy, capacity and time.

The increase in expectation and demand on us as carers is unreasonable and unrealistic. It feels as though this is where the punitive element is highlighted. Increasing the burden on already burnt-out carers is inhumane.

Instead of putting this increase on requirements onto participants and carers, why not focus on the providers?

We have been sitting with a plan for which needs changes to how, where and what the funds can be used for. We have been completely paralysed with the administrative burden and anxiety around raising attention for 18months. The system and processes are already flawed, why complicate it more for families? You’re in a position of power and authority to improve this and yet you’re proposing more strict and labour-intensive processes be passed onto us. Make it make sense?

Community participation

We do not have access to this type of funding currently and would benefit greatly. is isolated. We are isolated. His days consist of being at home or in the local area with either myself or his father or both of us at the same time. There are many barriers to accessing community and this falls on us as his parent carers to attempt the facilitation of opportunities if and when they arise. We are raising two children with additional needs, homeschooling and working. Getting to the supermarket

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Submission 2616

to buy groceries is a challenge or to the pharmacy to fill a script. Attending medical appointments requires 2 adults. We are unable to facilitate opportunities for our younger child as we are trying to achieve the bare minimum for the family. We are late to work, a lot. We do not get the chance to maintain our own appointments such as the GP, dentist or counselling. We have significantly lowered our expectations regarding our self-care and the care of our home. Showers are a privilege. Getting the car serviced on time is impossible. We cut our own hair. Attending social or family gatherings is not an option. This is our current state. We are living in deficit as it is. We have been told not to draw attention through a plan review request. This is the hypervigilance families like ours are living in now, the proposed changes will make this an ongoing reality. At the moment I live with the smallest amount of hope that we may have access to this vital support.

Eligibility/ assessment changes

This is terrifying for me as I live with the reality of ’s disability and how complex his needs are. The current focus on therapies in ’s plan, in my view is a way to “increase functioning” to meet or match typical functioning for a person his age. This is where the ableist agenda rears its head. ’s disability is permanent. It has lifelong impacts on his capacity and capability in many areas of his life. No amount of therapy is going to change his brain. Therapies we have been accessing have helped us to learn how he operates and what we can do to alter the environment and the way we engage with him to minimise risk and increase safety. As grows older, the impairments he experiences become more obvious as he continues to require significant support with activities of daily living, self-care, communication and learning (just to name a few). His needs are dynamic as he grows and this is expected as people change over time. In ’s case, the needs become more intense and demanding on us as parents and as a family. Autism and especially PDA, seem to require more convincing and justification as they are non-visible. Combine this with the proposed standardised and system driven decision making increases the risk to families like ours. Genuine collaboration is required to understand the unique differences and challenges families like ours faces. There is nothing standard about being Autistic. There is nothing standard about living with disability. There is nothing static about human needs. The risk of an inflexible and non-responsive system, one which we are already facing, cannot become an ongoing reality. Where does the increase in demand go? It will land on burnt-out carers. We will be faced with the decision to leave employment. We will continue to experience financial hardship and isolation. How is this reasonable? How is this fair? We won’t disappear. We will appear in hospital emergency departments, urgent mental health care centres and crisis services.

Foundational supports / system changes

The NDIS was a quick reform and the redesign is turning into the same experience. Please learn from the previous mistakes. Support services and programs were defunded and people will need was put onto the NDIS. Now the plan is to redirect (some) to other supports but they do not exist. This sense of urgency is reactive and risks people falling through the gaps or support being subpar. A coordinated approach across appropriate stakeholders, inclusive of lived experience is necessary to see the effective design and delivery of such changes. The unknown on the back of a poorly executed reform change is exactly why there is no faith and confidence in community. We are the carnage. Our children deserve better. Their future and community depend on it.

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Submission 2616

4. What I believe this Bill gets wrong This Bill will set us back in many ways. It risks our Education and Healthcare systems as people will present in more complex and distressing ways in crisis. It risks economic participation as more and more carers will be unable to engage in paid employment. It further fuels ableist and discriminatory rhetoric within society which increases social divide, stigma and shame. These are cultural and societal costs we cannot risk. The changes dehumanise people attempting to access basic human rights, and raise the cognitive, logistical and financial burden on already vulnerable people. Living with disability is hard enough. Raising the stress and strain through system and policy change will be catastrophic for us now and well into the future. We did not ask for this. No one wants to be disabled. No one wants to rely on support. No one wants to live justifying need, putting out spot fires and focusing on the negatives of life. The changes will simply make this more of a reality. Make it make sense?

5. What needs to change or be protected  Genuine choice and lived experience voice needs to centred and protected. Consultation and collaboration with people accessing the system needs to be practiced to ensure viable and responsive care and support.  The system needs to operate in a way that factors intersecting system requirements to ensure sustainable and effective operation. Consider the cross over with Services Australia benefits and eligibility or the integrated supports offered within early childhood education. Work smarter not harder!  Stop with the unnecessary bureaucratic processes that force families like ours to make living simply existing and transform any semblance of our kid’s childhood into a sterile and pathologizing justification for accessing basic human rights.  Make formal supports more accountable and relieve the burden and responsibility on those of us that are more marginalised and vulnerable. ‘  Flexible and timely response to need. We are human, not robots. Our children deserve a future free from disadvantage, trauma and crisis.

6. Final statement I urge you to do something meaningful with what I have shared and what other people have shared with you. We are tired and time poor and need you to honour our stories and concern. You sit with the power to make or break what feels so fragile already, our worth, wellbeing, security and dignity. We want this to be viable. We need this to work. It feels wild that the government claims we cannot afford this and then turn the responsibility and blame for the future of the scheme onto disabled people and their supports. Make it work like you make it work for our nation to give away natural resources for free. Make it work like the government does when it comes to financially protecting billionaires, corporations and lobbyists. Send the right message to community otherwise we might as well resign ourselves to living like other countries where classism, ableism, discrimination and crime are through the roof whilst those at the top continue to get richer and richer.

I want a bright and safe future for my children. I want to engage in community and in the workforce. I don’t want to rely on benefits. We need this insurance scheme to work!

Signing off despondent and anxious,

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