Important Update
By: Laurie Hilsgen, Carers NZ CEO
Carers NZ: Thursday, 11am, 10 October, 2024
Important update from Carers NZ CEO Laurie Hilsgen for our community re disability funding and needs assessment.
This is a long message. Please read it if you are concerned about funding reviews and allocations that may be affecting the supports you receive.
Since about 20 December I have been monitoring our email hotline, phone helpline, and social media messages. Until that time, our surveys and feedback indicated that most NASC reviews and assessments were going smoothly - people's funding packages were rolling over, some were increased if needs had increased, some reduced but this was the exception.
After the March 2024 announcements about how disability funding could be used, our community was blindsided. Things are tighter now and you have fewer choices about funding usage. We don't blame the Government for needing to understand the disability funding landscape. But real people are at the end of every review and allocation.
Since pre-Xmas things have changed. All NASCs were given their 2025 allocation budgets in November we understand - five months after the start of the 2025 financial year. Once the reality of these budgets began to sink in for NASCs, we saw a sharp change in allocations and funding reviews. NASCs' key performance indicator is to stay within their allocated budget for the year to 30 June 2025. At the same time, there is a squeeze on residential placements for people with high needs. We believe these factors are causing a downward squeeze on allocations of community support, and especially for things like Carer Support and respite.
Many packages have been reduced, in the range of 15% to 50%+ based on our significant feedback from disabled people and families. Often the reason given has been that NASCs can't allocate more, or that packages need to be reduced due to budgetary constraints. In one geographic area, possibly more, family carers are being refused Carer Support and respite for new allocations for budgetary reasons. All carers need wellbeing breaks to sustain themselves and for the health and safety of their family.
Can NASCs do this - just refuse to allocate? Apparently yes. They can, and some are.
After the devastating chaos of March 2024, our community was told that there would be no more surprises. All of us understand that disability funding is being scrutinised, and that the Government needs to understand where resources are going and to have oversight of the costs and trends. That's sensible.
But now we need transparency about what's going to happen with NASC allocations in a climate of deficits and spending lids. Will there be waiting lists for NASC services and funding? Will young disabled children be refused supports on the basis of parental natural support (if you're a parent, you should provide all cares for young children no matter what)? Should family carers be refused Carer Support and respite to stretch scarce disability dollars? How can NASCs stay in budget with a funding growth window of a few percent, when demand is growing by 20+% a year? The numbers don't balance, and something has to give.
After March 2024 you were concerned about who knew what when before those announcements were made. We were taken by surprise at the time and could not share what was to happen beforehand, because we did not know.
But now, thanks to your considerable feedback and sharing of information among NGOs and other community Facebook pages, we do know. Cuts are happening. Reviews are being brought forward with the purpose of reducing package allocations. This is a fact.
Last Thursday we met with MSD DSS and NASCA to share information, and look at how to improve communications so you could have an honest picture of the evolving funding landscape. You deserve this, and talking about it can wait no longer.
We look forward to working with MSD DSS, the NASCs, the disability movement and our community partners to keep you informed, even if the news is not good.
Like you, we have more questions than answers. I have been concerned about scaring our community at a time of disruption. But unlike March 2024, this time we have some insight of what is happening. It is a situation where individual advocacy is no longer useful. This is a systemic trend driven by budgetary pressures.
In some cases, NASCs will make package changes to ensure consistency in allocation across NZ so that people with similar needs receive similar support. That is fair. We do have to end NZ's postcode lottery.
But where packages are reducing or are not even offered despite assessed need, this is unfair for disabled people and family carers. This is a fundamental system change that must be talked about and addressed.
We will do our best to keep you informed. We have told MSD DSS we are giving our community information today based on the feedback we are receiving. We will continue to escalate queries to NASCA, NASCs, and MSD DSS where appropriate.
We have heard your confusion and distress. Know that if you have been affected, you are not alone.
We have asked for clear communications about what you can expect and what to do if you have questions and will work with MSD DSS, NASCA and our fellow NGOs to ensure you are in the loop re what is happening now and what will happen next.
Laurie
Last Updated 29/01/2025
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