Carer Support changes its processing style - but without telling carers

Rant incoming....

Today has been another sharp reminder of how easy it is for disabled people and the people who care for them to be left out of decisions and communications. Warning - rant incoming! It has been a long, tough day and I am disinclined to be ‘nice’. Perhaps if the last 18 months hadn’t happened I’d be more politik, less inclined to post about such things, more open to being constructive. But the trust and goodwill that used to be there has been deliberately eroded, and I’ve noticed that change now only occurs if you get angsty and open up the issues to sunlight.

So. Here we go.

The context

From this coming Monday 14 July, all Carer Support (CS) Claim Forms will no longer be sent by post to carers. Instead, you will need to download the form from the website and you will need to submit the forms electronically by email. There will be no more paper or postal options (unless you contact the processing centre and specifically request this).

This decision was made by the processing centre, which sits within Te Whatu Ora/Health NZ, to save on postage, make their internal systems easier, and reduce paper use. While perhaps laudable, the information was not - and will not - be posted out to those who use paper forms. Neither was it communicated to disabled people, families, carers, community groups, DIAS (Disability Information and Advisory Services) organisations, or even to the relevant government departments (Disability Support Services and/or Whaikaha - Ministry of Disabled People). It was not publicly communicated and at the time of posting, the relevant government websites had old information on their respective sites (which perhaps reflects that neither were informed of the change?). Nor was it accompanied by any social media, alternate formats, or tools for families to understand the change. In fact, the only shareable information was provided to Needs Assessment and Service Coordination services (NASCs), via an internal memo.

If it hadn’t been for an informal Zoom call on Friday morning (yes, this Friday, the 11th July, literally half a working day before changes were implemented), community groups wouldn’t have even known this was happening. No warning. No support. Just silence.

Why it matters

The parent, whānau, and carer community within the disability sector knows the key role that Carer Support plays. While many confidently use online and electronic means to submit their claims, some do not. Changing a system, with limited notice, poor communications, and inadequate support for change is not just inconvenient, it can cause unnecessary stress, anxiety, and upset. It means that:

• Carers may now be left unable to claim support they are entitled to.

• Nobody checked to see if anyone needed alternate formats.

• No time was given to prepare, upskill, or access help to use electronic forms.

• Carers who rely on print and post are now completely shut out.

This kind of change, done without consultation or planning, actively undermines trust in government systems. The current socio-political climate means we need more trust, not less.

calming image of a blank white wall - much like the comms on carer support

Human rights obligations ignored

These failures contravene New Zealand’s obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD):

• Article 9 (Accessibility): this is the right to access information and communications on an equal basis.

• Article 21 (Access to Information): this is the right to information being provided in accessible formats appropriate to disability in a timely manner.

What do you do when staff dismiss concerns? What do you do when you have raised the need for clear communication but get brushed off? How are you meant to respond when staff are narrowly focussed on cost savings, not on real world impacts for carers? How do you explain why accessibility and support are important in the face of disinterest and a failure to engage in even basic forms of community consultation?

I guess, if you’re me, you blog about it on your Substack newsletter. And yes, I have sent carefully worded emails to those in power. Sadly, I know all too well that pushing for change in the current environment requires a solid dose of sunlight and public awareness.

It’s easy to do things well

The disappointing part is that it is so easy to communicate well. Community groups and organisations are often more than happy to provide support and communicate changes in positive ways. Groups know members. We know who prefers phone or TIS or email, who we need to print newsletters for, who requires audio or guided support. We could have helped communicate this change well, sensitively, and accurately - but we weren’t even told. And neither were our DIAS colleagues across the disability sector.

Our members deserve better. We all do. It didn’t have to be like this. If we’d been given:

• Some notice. Ideally 6-8 weeks. I could have worked with 10 working days to be honest. An afternoon is insulting.

• A short communication pack (e.g., social media tiles, sample text, alternate formats) with key words and phrases to explain the changes.

• A basic heads-up email explaining the situation and what was coming.

Then most community groups would have been happy to support our respective communities to transition smoothly. It is our job after all! But the way this was done showed a real lack of care for disabled people and the people who care for them. It communicated that we didn’t matter, and that our knowledge was unimportant and of little consequence. That hurts.

more calming images of shrubs in bloom for some wintry cheer

What now?

We’re asking Te Whatu Ora (Health NZ) and the Carer Support team to:

1. Immediately update the relevant websites with accurate, accessible information.

2. Issue a formal communication to all community groups and DIAS agencies whose members use Carer Support.

3. Provide alternate formats and transitional support for those carers who need it.

4. Work with the sector before rolling out future changes.

We’re also asking: How do we stop this from happening again? Is a formal complaint the most effective route? Should we take this to the Minister? While I am always open to guidance I am done with staying silent. If anything, the events of the past 18 months have shown that speaking out, loudly and publicly, is the only way to generate real change.

In a time where misinformation is everywhere and when trust in public systems is eroding, this kind of communication failure does real damage. It also tells those who care for others that they don’t matter and they are nothing but an afterthought.

Lastly, a thank you

To everyone who scrambled to get the word out. To those DIAS organisations who shared what they knew. To the community groups who did their best with limited resources and a short timeframe. And to those who remind us that we are never alone in this mahi - thank you, from the bottom of my heart for caring about us. We will keep pushing, we will keep advocating, and we will keep showing up for our community. Because that’s what we do.