Submission 2312

Dear commi*ee,

I ask the government to withdraw this bill.

I am a disabled mother to a disabled child. Both my child and I are diagnosed Au=s=c (Level 2) and ADHD Combined Type (severe).

We both received our diagnosis this year. Myself at 31 years old, my daughter at four and a half.

Access to the NDS is essen=al for providing my daughter with the therapies she needs, to maintain her connec=on to community and to allow her to grow into a happy, healthy adult.

As a late-diagnosed Au=s=c woman, I can trace these experiences back to being an unsupported neurodivergent child, teenager and adult:

• Anxiety
• Depression
• Disorder ea=ng
• Suicidal idea=on
• Under achievement at school
• Bullying
• Delayed access to medical care
• Delayed access to mental health care
• Poor physical health
• Sexual assault
• Social isola=on

As you can imagine, any parent would want a different trajectory for their child. We have poured thousands of dollars into assessments already – to provide my child with informa=on about her unique, neurodivergent brain AND to secure her access to accommoda=ons and supports, including NDIS funding.

I’m incredibly concerned by the push to make sweeping changes to the NDIS across a systems level, by targe=ng groups of people by age, loca=on or diagnosis to make changes instead of making measured assessments on a case-by-case basis. We see evidence of this occurring in the ‘Thriving Kids’ proposal which sent shockwaves through the community. So many of our kids will poten=ally be leY behind by these changes and families are understandably very worried for what is to come. You cannot look at one group of people and assume there is one ‘right’ decision for the en=re group.

Submission 2312

I’m also a primary school teacher. I’ve taught across year 3-6 students for 6 years, always in my own classroom and full-me. I’ve felt the workload. It’s impossible to cater for children’s needs in a class of 28-33 kids (yes, I had 33 year 6 children in my first year of teaching). I’ve had upper primary children who cannot read. They can’t sit at tables. Can’t maintain friendships. Children who eloped and who had to sit outside in the corridor due to overwhelming sensory sensi-vies. Chairs thrown, windows broken, classrooms destroyed.

I’ve done training after training after training. Wri*en so many plans, secured high levels of fundings, countless parent mee-ngs. I loved all those children. But I was not enough.

Early interven-on could have made a staggering difference to those kids. I’m so concerned that tightening access will lead to worse outcomes for children at school and at home.

My own child has challenged me the most though. I love her more than anything in the world. I cannot put her into a mainstream classroom – I know what that looks like for children like her.

What happens when supports are removed from the home?

What happens when you push more and more and more onto teachers?

Our local school is combining the year 2 class. One teacher to nearly 70 children. They can’till the teaching posi-om. Teachers are nowhere to be found – too burnout to con-nue.

I’m afraid of what happens when ‘parental responsibility’ is expanded. My child requires constant supervision. She has no sense of safety and elopes – onto roads, into carparks, towards lakes and ponds and rivers. She a*-empts to touch the oven and jump off cabinets. Our home is child proofed but I can’t move the locks any higher. She sleeps in our bed, because I need to know if she’s moving around the house – so she doesn’t slip out the front door again.

She needs constant coregula-on. It’s exhaus-ng. She cannot be away from me for any length of =me.

Thank god she sleeps now. She was s=ll waking every hour at 6 months old, s=ll waking 3 imes at 1 year old. S=ll needs constant touch to fall asleep.

I see what other 4.5 year olds are doing. How they behave.

Their parents are not living remotely the same life as me.

Please don’t tell me to try harder. I’m doing the very best I can already.

The =meframes to respond to requests for more informa-on are already =ght. In my experience living in regional Victoria, gefng into a GP already takes 5-6 weeks. Gefng into

Submission 2312

Getting an appointment with specialists (like paediatricians, psychologists, psychiatrists, surgeons) takes months to years. Gefng an appointment with an allied health team that you have established care with can take weeks. Finding a new allied health professional can takes months to years. My daughter has been waitlisted for an Occupa=onal Therapist and psychologist for six months, with no indica=on we will be seen any=me soon. Some of our local Occupa=ional Therapists, Speechies, Psychologists, etc have closed their wai=ng lists because the demands exceeds the number of individuals they’ll ever be able to serve.

When a plan is reviewed and more evidence is asked for, it can take months to even secure an appointment. This puts families into significant distressing, thinking their child or loved one’s plan is going to be cut – because they cannot access support and care.

I’m concerned also about the par=cipant engagement rules. As an Au=s=c, ADHD and Hard of Hearing person, phone calls are difficult for me.

Coupled with having very limited access to childcare, for a child who finds phone calls distressing (due to demand avoidance), it makes it extremely hard to pick up calls with limited no=ce. Increasingly, calls are made from private numbers. No messages are leY. There’s no way to effec=vely screen who is calling. And a text message alert some=mes arrives aYer the actual phone call is made.

When we stay with family who live rurally, phone service is intermient. I’m concerned about families who do live in rural and remote areas, with intermient access to phone and internet due to loca=on.

I’m also concerned that there may be significant overlap in NDIS par=cipants and other socio-economically vulnerable popula=ons. Those without ongoing access to phone service, to internet, to printers and scanners. Par=cipants who are unhoused or insecurely housed.

The reality is, that the process of applying for and maintaining contact with the NDIS comes at significant =me and energy cost for my family and I know we are not alone.

I’m concerned that changes to how and why plans can be reviewed will be harmful for our community. My own capacity as an Au=s=c person fluctuates considerably. I’m currently in burnout and my support needs are higher than they’re ever been. I’m hopeful that with capacity building supports, access to my community and help with daily living, that I can eventually recover from burnout. Then my support needs will change again.

In =mes of crisis, families need to be able to access help quickly. It needs to be efficient and fair. Par=cipants and their families need to feel comfortable saying “this isn’t right for me” without fear of punishment by having funding cut.

Submission 2312

I’m seriously concerned about this bill. Not only for its impact on my own family, but how it will change our society. I’m worried about the potential loss of life. Of family breakdown. Of poorer health outcomes for disabled children and adults. It deeply saddens me that we would abandon the most vulnerable in our society.

Can you imagine explaining to your child why their therapists have been taken away? To your loved one, why they can no longer access their community and must live in painful isolation?

And please consider all the missing submissions - those who are most vulnerable, will not be given a voice. You will not read their submissions. They are not represented in anything you’ll read. Please don’t forget them.

Please, please consider the very real and very human implications.

Our children deserve a better world.