On March 18, 2024, I was woken early by two of my primary school-aged autistic children. One, still toilet training, needed a nappy change. She flipped on the light, much to her brother’s groans and screams. Thus, the day begun.

As we made our way out of the bedroom, I could hear my autistic teen bouncing on our trampoline. She was wearing her noise cancelling headphones I paid for using government disability funding. It’s her way of calming herself. Before we had a trampoline, similarly funded, my daughter engaged in frequent self-harming, smashing things, crying and ripping curtains as she tried desperately to regulate her emotions and the sensory overload in her nervous system.

At 11:52 a.m., a friend texted: “OMG! Have you seen the changes they’re making to the disability funding?” There was a crying emoji.

I frantically searched for information. Finally, I found a social media post linked to Whaikaha’s changes to purchasing rules and equipment modification services. My heart sank. I don’t know which feeling was stronger: anger or devastation. With Whaikaha’s changes, my three autistic children and the entire disability community has been abandoned.

The change to disability funding, made without consultation or notice, is now an inflexible, one size fits all approach.

The disability community had fought for years for flexible funding, ultimately winning some concessions. Unlike this announcement from Whaikaha, the changes didn’t happen overnight. The flexibility came with restrictions, including proof that purchases or services met four criteria. It was not an open chequebook, as Minister for Disability Issues Penny Simmonds implies.

I am a teacher but cannot work full-time due to my children’s disabilities with the resulting loss of income. My husband is required to work from home.

My children used to have a carer so my husband and I could have respite. She quit more than a year ago and we have been unable to find a replacement. While we could no longer take a break from the kids, at least flexible funding allowed us to buy items such as timers for transitions, compression singlets and weighted blankets, all of which comfort the kids and calm the household.

We purchased wiggle carts, which meet our kids’ balance needs. Flexible funding allowed swim lessons in smaller groups, crucial because of the children’s communication difficulties.

Our flexible Individualised Funding has been life changing by lessening the isolation of parenting autistic children. More importantly, it helped our children thrive.

Whaikaha’s sudden changes have destroyed the progress we’ve made.

I am now unsure if I can continue even my part-time teaching. Will I have to go on the benefit? I am not sure yet.

My children’s thriving can only be good for New Zealand’s future. Forcing the vulnerable to struggle cannot bring benefit to the nation.

Do we want a New Zealand where everyone thrives? It seems this current government doesn’t. 
 

Bio: Shary Bakker is a teacher living in Ōtautahi. She is a mother of four children, three of whom have autism among other disabilities. In her limited spare time, she enjoys watercolour painting and serving on the board of a local community group.

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