Hi, my name is . I live with complex PTSD, mental health diagnoses, and am Autistic. I live with my two teenagers, both Autistic, with ADHD and complex trauma.
My key concerns
- Community participation During periods of extreme stress and lack of sleep brought about by my PTSD symptoms, I cannot leave the house by myself.
Support in community access means things like being able to grocery shop in person, meaning markdowns/ cheaper products are available, and with our excessive medication bill every extra saving counts. It means I can pick up our medications from the pharmacy on time. It means I can feel safer as someone literally has my back so people can’t approach from behind me if I’m in an open space, the mental drain and stress levels lower so much with a support worker.
Without these supports the burden of support would then again fall on my parents (both still having to work full-time, while already taking care of my elderly grandparents with dementia.)
I’d also like to include that with assistance from their support worker, my eldest teen (then 16) went from being unable to leave my side in our little shopping centre, to being confident to browse stores on their own, coming back to me just to check in between, and also make their own orders for food at the counter/check out at the cashier in a store on their own. It has made such a giant world of difference for their life skills as an autistic person with severe anxiety and trauma. With these foundations put in place for teens and other young people with disabilities, their skill progression, and subsequent quality of life is ABSOLUTELY worth the investment, and will also likely lead to less interventions needed in future.
*Eligibility / assessment changes
As someone who lives semi-rural, on a DSP, supplemented with a couple of hours accessible work per week (while I am well) it concerns me that these changes may exclude me, and my children, from supports, if they’re deemed to be available despite being too great a distance from our location, and/or too expensive for us to access. With our collective health needs, our monthly medication bill for the three of us is over $300, along with regular specialist appointments. We do not have spare income already at this point. Having to travel distance (beyond the hour we already travel for paediatric psychiatry, and connective tissue specialists), or spend anything beyond what we currently do, would be absolutely prohibitive to us accessing supports.
*Automated decision-making It concerns me greatly that the human element is being taken out of the processes. We’ve seen many, many times that when computer programs and algorithms, there is widespread harm as a result.
Time and again the criteria for acceptance into the ndis/plan renewal has changed, asking for more and more supporting documentation from allied health professionals to justify needed supports. Shifting now to Automated decision-making will not allow for individuals needs to be prioritised, and seems instead to be a way to remove guilt from head office in charge of ensuring cost-cutting, while also being able to outsource responsibility of any mistakes to flaws in “the program” rather than any personal culpability.
Notes:
My lived experience with the NDIS for both myself and both my teens has shown how much better quality of life is when our lower income, and semi-rural postcode, doesn’t impact our abilities to seek support.
When I am able to succeed at those things that a neurotypical, non-disabled person can do as a mother, and as a community member, I am infinitely happier, but this also this has further positive impact on both my physical and mental health.
I want to be able to have the capacity to give the emotional support my teens need, to help them navigate a world that isn’t designed for them to thrive in, and to help them build their skills and capacity to self-advocate, and be able to live independently one day. As every parent knows, one day, we won’t be around anymore to give that assistance ourselves, so we need to give them the groundwork to succeed on their own.
When I am supported, I can fulfil those roles parents are meant to play in our children’s lives, and my disabilities don’t end up with me ill, trying to be in 5 places at once to ensure my teens are supported with their needs and disabilities and health appointments, while also trying to maintain the house alone, while living through broken sleep every night, sometimes none at all. And I don’t dread waking up the next day, already hating myself for feeling like my disabilities cost my children quality of life, and cost them the mother that they actually deserve.
In closing,
The NDIS needs to be protected, not demonised. The supports given by the NDIS ADD money to our economy, over $1.50 in return for every dollar spent. It employs vast amounts of people, and also ensures that people with disabilities can access the care and support we need.
It needs to remain a human system, with human decision makers because HUMANITY is needed to see participants as whole people, not just a number in a system, or as someone who is a drain on society. A computer cannot ever assess the capacity of a person to exist, or what that person would need to be a part of our society.
Every dollar that is spent in support, is collective money Australia saves in future costs, both health related, medical, alleviates need for mental health hospitalisations etc, just the same as investing in preventative health, and education. In my own experiences watching my teens learn skills for navigating the world has proven this repeatedly.
I ask you all for integrity, honesty, and humanity when you reach your decisions on this Bill. Disabled people are not less worthy of care, of understanding, or of investment, than any other Australian person. We also want to belong. We also want to achieve. We also want to be part of society and community here in Australia. Thank you.