Disabling lives

Cuts by any other name are still cuts

Earlier this week, Carers NZ took the extraordinary step of posting their concerns on social media. If you know Carers NZ, you know they mostly prefer to work hard behind-the-scenes with Minsters and staff alike to make practical, real-world changes that benefit carers and disabled people.

It is unlike their usual practice to make a post - that they did so is indicative of their frustration at an unresponsive disability support service (DSS, now part of MSD). Despite stressing the need for clear, direct, and responsive communications, Carers NZ was informed by DSS that responding to the confusion and chaos was not urgent and they saw no need to address the tsunami of feedback that many disability organisations are receiving from disabled people, families, and carers regarding these cuts to funding allocations, imposed reviews, and long wait times.

The CE for Carers NZ writes:

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.

NASC stands for Needs Assessment Service Coordinator. These are entry-point organisations tasked with managing needs assessments and determining funding package allocations for disabled people. EGL sites are a type of NASC, but have traditionally operated in a more user-friendly, dignified, and supportive manner than the model inherited by NASCs.

Carer Support is one type of funding and is specifically for full time carers of a disabled person. Calculated at $80/day, with a maximum allocation of 50 days (most carers receive around 20-30 days), this funding is designed to allow carers to take a break and support their physical and mental wellbeing. It is administratively cumbersome (you must fill out awkward reimbursement forms, attach receipts in the accepted format, and ensure your details are painstakingly filled out each claim) and is often the only type of funding allocation people receive.

A senior staff member at DSS responded to the growing pressure by stating:

…there is absolutely nothing we are aware of in relation to DSS cuts on the cards. As you know budgets have in fact been increased across DSS funding in total this year … There has been no directive to reduce packages in EGL.

What is going on here?

What is happening then, if “there are no cuts” yet thousands of disabled people and families are having their disability support funding cut?

there are no cuts, just as there is not a red sunset in this picture I guess

Well, as usual, it is a case of government double speak. Let’s unpack it together:

At the start of the financial year, NASCs were informed, in no uncertain terms, that they must remain within their allocated budget. They were not given real time data to show how they were tracking until eleven weeks into the financial year. At this time, once the data was provided, it became glaringly obvious that the allocated budgets were entirely insufficient and had effectively been fully spent from the first day of allocation.

While NASCs have always had budgets, this has not previously included the costs of residential care, which were allocated separately. There were also new operational guidelines issued, meaning a reversion back to medicalised models and rules, with more of a focus on residential care.

Why is this a problem?

NASCs must now include in their budget the cost of residential care (which is super expensive). This has resulted in the NASC budget for the financial year being fully allocated with existing clients - i.e. before the NASC accepts any new referrals.

DSS/MSD allocated budgets do not grow with referrals.

NASCs are not allowed to decline referrals or hold a waitlist.

The funding calculators being used are decades out of date.

You can see how this government has essentially hamstrung the organisations tasked with assessing and providing disability supports to individuals and families. They must take on all referrals, must provide a needs assessment, and must allocate funding while simultaneously staying within a budget allocation that is entirely insufficient and overspent to start with.

It also means this government can talk out both sides of their mouth, saying on the one hand “there are no cuts” while on the other hand clamping down and reducing support allocations for disabled people and families.

One parent wrote this clever analogy:

You’re having some friends around for afternoon tea so you make a sumptuous apple pie. Just for good measure you add an extra can of apples to the filling to make it plump. Then, just as you’re about to serve the apple pie, you find your son has eaten two big slices already. And, instead of the 10 girlfriends you were expecting, there’s 15 who arrive. Despite plumping up the filling, the pieces of apple pie were very small in order to serve everyone.

This analogy elegantly and succinctly describes exactly what is happening, where residential care is the son, and the 15 friends are the increased (but unbudgeted for) need.

As I wrote back in June 2024, the policy changes being enacted will result in disabled people and families having their support allocations cut and reduced:

And, as predicted, this is exactly what is happening. Disabled people and their families are having their support packages cut by 15-50% in order for NASCs to meet arbitrarily imposed budget restrictions by DSS/MSD.

Outdated funding calculators and tools

The funding calculators and tools used in the disability sector are based on outdated medicalised understandings of disability, and have not been updated for years - one ‘recent’ SPA (Support Allocation Package) guide is from 2016. Most calculators are even older. This means that the prices arrived at have minimal purchasing power and/or force NASCs to go outside of the recommended parameters to actually meet the ordinary, everyday needs of disabled people and families. However, when you go outside of the provided narrow parameters, you start to lose consistency and transparency.

It’s a mess. For example, the 2016 SPA guide notes the following:

The document includes specific numerical figures. It has not been updated since 2016 (yes, I know, cost of living increases have been significant over the past 10 years!). The SPA guide had to be OIA’d in order to be released. You can see from the below table that the figures are ridiculously tiny. Also, if a disabled person has family (aka natural and community supports), that the expectation is that family members will provide, for free, a chunk of the care required:

The SPA tool also fails family who are supporting disabled family members with high and complex needs - it is too limited, the funding is capped, and it completely lacks any form of holistic and/or family wellbeing approach.

The disability sector desperately needs updated tools to ensure a fair and equitable system for disabled people and families - but an update would clearly identify just how dreadfully underfunded the disability sector is and how poorly served people are within it.

Disabled people and families are being harmed

These cumulative failures to adequately address both known and new needs is harming families.

Writing for The Listener, Colleen Brown describes the difficulties that families of disabled children are facing in attempting to access disability related support, and the exclusion and exhaustion this creates for everyone. Parents and carers are at their limit, have limited access to supports, been maliciously maligned in Parliament, and now are having even their (very minimal) supports slashed.

We have the money

If there is $12.4 billion in cumulative revenue for the tobacco industry, there is more than enough to support disabled people and their families to live ordinary lives.

If there is $2.9billion for tax breaks for landlords, there is more than enough for disabled people and their families to have access to suitable support.

If there is $14.725 billion for tax cuts for the wealthy, there is plenty there to enable appropriate funding allocations for disabled people, families, and carers.

Yet this government is taking the money for each of the above out of disabled people’s pockets. Shameful.