This is Sara

14/10/2026

Remembering the good times we had on our weekend. We had so many, AJ going to PAX and meeting his friends while I went shopping. The next day was a day spent recharging. And then we had a great day at PAX together.

13/10/2026

NDIA terror: The National Disability Insurance Agency has reportedly raised a number of unjustified child protection reports against the parents of kids PWdWA is supporting when the parents object to massive underfunding of the children's needs in NDIS National Disability Insurance Scheme plans.

The NDIA's actions are creating a culture of fear and terror that's not acceptable. The NDIA is also trawling children's NDIS data for material as its officers inappropriately allege abuse and neglect. It's a beat-up that's truly disgusting.

Like our friends over at SWAN - South West Autism Network, our client-families are getting knocks on the door from the Western Australian Department of Communities too, and are finding the WA Government is just as appalled at the NDIA's unjustified actions.

PWdWA thanks SWAN for publicly highlighting this disturbing trend that has emerged again this year. We particularly note SWAN CEO Nick Avery's comments to Australian Associated Press that ran on the Michael West Journo MichaelWestMedia Independent Journalists platform.

AAP reported Nick said, “When (parents) query large funding cuts, they’re being told ‘that’s parental responsibility (and) if you can’t perform your parental responsibilities we’ll have to contact child protection and family support’,” she said.

“NDIS staff are following through on that threat … simply because the parents are asking for more support for their child.”

The NDIA's justification for cutting support worker hours in plans are that the missing coverage is instead "parental responsibility." By doing this, the agency is presenting a weak fictional argument that is putting kids at risk of inadequate professional care at home and in the community.

Parents who say the time that's been funded for years is still justified are – appropriately – advocating for their children and family's needs and aren't engaging in abuse and neglect by doing so.

Shame on the NDIA for allegedly arguing abuse and neglect, and shame on the agency for trying to terrorise people into not objecting to the inappropriate cuts it's made to many children's NDIS plans.

Parents are simply advocating for their children, a key parental responsibility that predates the weak fictional definition the agency has created since leaning into widespread cuts.

To the NDIA and its staff: do better.

To the Australian Parliament inquiry into the NDIS who heard about this trend this week from SWAN: make the Australian Government do better.

To the WA State Government: know the agency is engaging in systems abuse here. Thank you for closing off these unwarranted, abusive reports.

If you would like to read the AAP story on MichaelWestMedia, see the link in comments 👇






Disabled People Against Cuts Australia

13/10/2026

Yeah Baby!!!

This one is among the most impressive rewatches for me in a long time. Samuel L Jackson has even said it’s one of his favorite movies he’s ever made, and since he’s been in every movie, that’s saying something.
I think Geena Davis is awesome here- the character arc of mother back to assassin back to mother is beautifully played and as far as hidden 90s action gems- doesn’t get much better.

13/10/2026

PAX 2026

13/10/2026

13/10/2026

Wise words Arnie!

Arnold Schwarzenegger has once again sh... more

13/10/2026

An update on the clothes sitch. I love those dresses and I won’t be able to afford to replace them. Especially with Christmas around the corner.

13/10/2026

I’m tired of hearing about caregiver burnout. There. I said it.

In the disability community, there’s a LOT of talk about burnout. Specifically, caregiver burnout.

Now, before any of y’all come at me (lookin’ at some of you SMA moms 👀), let me make something VERY clear.

Caregiver burnout is real. It happens. All. The. Time.

Whether it’s family, friends, or paid staff, caring for someone with significant disabilities can be physically, mentally, and emotionally exhausting. I know that. I see it. I live alongside it.

And it is a completely valid experience.

Heck, caregiver burnout is so widely recognized that there are entire retreats, workshops, support groups, and respite programs dedicated to addressing it.

But, at the risk of sounding a tad self-centered…

Ummm. What about me? What about US?

The ones receiving the care.

The ones whose bodies are the reason that care is necessary in the first place.

The ones who have to depend on other people for the most basic aspects of being human.

Because here’s the thing.

At some point, every caregiver has the possibility of stepping away. Maybe it’s a few hours. Maybe it’s a weekend. Maybe it’s finding a different job or deciding they simply can’t do it anymore.

And while those breaks may not always be easy to come by, the option exists.

But us? We don’t get to clock out.

I don’t get to take a weekend off from having SMA.

I don’t get to go on a retreat and come home to a body that suddenly works.

I don’t get to decide that I’m too overwhelmed to need help getting out of bed, going to the bathroom, eating, or breathing.

I don’t get to resign from being disabled because I’m exhausted.

And I promise you, the mental and emotional exhaustion of living this way is something that deserves just as much recognition.

Because it’s not JUST the physical limitations.

It’s the constant planning. The coordinating. The vulnerability. The loss of privacy. The lack of spontaneity. The guilt that comes with knowing how much other people have to do for you.

It’s having to trust people with your literal life, even when you’re tired of trusting people.

It’s managing other people’s emotions and exhaustion while trying to survive your own.

It’s feeling like a burden even when nobody has said you are one.

And for many of us, there’s the added reality that this isn’t going to get easier.

As we age, our disabilities may progress. Our needs may increase. Our independence may decrease.

And we have to somehow make peace with that while the world focuses on how exhausting it must be for everyone else around us.

I am not asking anyone to stop talking about caregiver burnout.

I’m asking why we don’t talk nearly enough about the burnout that comes from needing care.

Because I can appreciate how exhausting it is to care for me while also acknowledging how incredibly exhausting it is to actually BE me.

Both things can be true.

But only one of us gets to walk away from my disability.

And it obviously isn’t me.

Just. Do. The. Daggum. Thing.