Disability Budget Ramble

Written by Cherie Cawdron, Board Chairperson, Complex Care Group Trust 

Budget Day arrived this year, and I found myself unable to deep dive straight into the numbers as I am currently close to burnout from living the life of a complex carer, while trying to hold down a job and keep up with daily life. While I work hard to advocate both for Mitchell and families supporting those with complex care disability, health and behavioural needs within my role with the Complex Care Group, I am always mindful of my health and wellbeing. It’s a delicate balancing act. Some days I can muster up the energy to engage, and other days I just can’t. Over the past few days, I finally had the headspace to look deeper into what this year’s Budget might mean for families like ours, and I want to share that with you here.

Firstly, a bit of personal background. The past few months since Mitchell ‘transitioned’ out of school have been beyond tough. I have watched a 21-year-old young man who wanted to get up and go to his specialist school each day transition into an angry, agitated and aggressive insomniac who is difficult to get out of his bedroom. The two days before Budget Day, he stayed awake for 40 hours straight, with us unable to engage without getting hurt and/or him hurting himself. We have burned through a couple of carers from challenging behaviours in the past 2 months, and both our long-term support workers and Phil and I have been through the ringer, dancing around what each day and night will bring. It’s not fair to share full details about those behaviours on here – let’s just say other families will know and understand what a combination of autism, intellectual disability and physical challenges can result in when you change routine.

Five months ago, when Mitchell turned 21, he had a couple of days before the end of the school year. If he had been born in February, he would have had another full year at school. That’s the birthday lottery, as within a specialist school, once you turn 21, you can stay in school until that school year concludes. He was also no longer eligible to go to Wilson Home for respite stays. A place he has enjoyed since he was 9 years old. We have known these changes were coming, so we honestly tried to prepare, but the reality has been a nightmare, and the difficulties in finding solutions in the community feel insurmountable. At the moment, we are still trying to find solutions for ways to improve his quality of life, and indirectly ours, but it’s not that simple. Services don’t fit. The community is not ready and welcoming to us. Funding restraints have been challenging. Hope is hard to hold onto. These massive changes to his routine have been the main driver for his changes in behaviour.

As hard as we try to share what it is like to be a complex carer with the Government, I can’t help feeling that our complex care community is still not fully understood. During the consultation and review process, we made a submission and met with DSS to provide input about our unique issues. We struggle to be seen as we continue to live, often in isolated situations, mostly hidden in our homes, simply because participating in community life is not just tough, it’s exhausting. This is why respite was a lifesaver – every 3 weeks or so, we would get 2 or 3 nights of quality sleep, time without shouting, time without support workers in our space, just time to breathe and regenerate.

Now, without a suitable respite option available, I find the tension and stress have built up in me, and it has shown up in my body. I have been to the physio for a rotator cuff injury. I have called an ambulance for myself due to chest pain – most likely, stress-related and luckily not my heart, but it meant I visited the after-hours Doctor clinic to follow up on why I had chest pain – probably indigestion/beginnings of an ulcer or possibly my gallbladder. I have taken a couple of days off work sick – something I don’t usually do and have had multiple days where I have experienced neck pain, headaches and vomiting. Both Phil and I are in a constant state of sleep deprivation, and when we are awake, we are always in hypervigilant mode. My body never really relaxes, and when I start to have issues with my health, I know it’s time to reassess what is going on.

It’s not just the lack of success around the transition process that has caused me to feel this – this phase has been worsened by the austere measures announced by Government on 18 March last year, the effect of the changes to flexible funding, the independent review, then the following consultations, difficult needs assessment negotiations across the past year and the realisation that services are not funded to meet the needs of our son or us as family carers. It’s 15 months since those announcements, where we have lived with uncertainty about Mitchell’s future, which affects our whole family’s future. Uncertainty is demoralising, and while the Government has been restructuring and rearranging Disability Supports, we still have to carry on with our day-to-day lives.

It’s more than 18 months now since we were ‘so’ close to Mitchell entering residential care before we were told that, because of his high health needs and ‘oxygen’ therapy, he would not be accepted into Disability residential care. Our only option to place him is Aged Residential Care. Did you know there are more than 800 ‘young people’ in Aged Residential Care? Young people are defined as those under 65 years of age, and for a whole sector of our community who have health and disability needs, this is often their only option when family can no longer manage their care. Then, of course, our community was placed way down the list with the pause on entry into residential care, making it nearly impossible, even in crises, to get that support.

Budget thoughts

While I wasn’t holding out great hopes that Budget Day would bring the increased funding needed for the Disability sector – I did hope that because we have been ‘on a pause’ while results of reviews and consultations took place that this budget might come with some detail about how the spending would look in the future.

I hoped to see an acknowledgement from the Government that the current funding model did not meet the needs of our complex community and that funding for those with the ‘highest needs’, was supported.

I hoped to see an acknowledgement that we have growing numbers of disabled people who require support and that the budget recognised the increase in numbers alongside the increased needs for support.

I hoped to see an acknowledgement that early intervention was valued, as research shows it is effective.

I hoped the Budget would come with a plan of action and initiatives grounded in what the Independent Review, the consultations and the community had been asking for with regards to Disability Support Services, Disabled People and Carers.

All that hoping, and then Budget Day arrived.

From the Budget at a Glance and in the headlines, we were told there would be $760 million to support the provision of Disability Support Services. It was also highlighted in the Budget announcements on the Disability Support Services website that: “The Government’s 2025 Budget announcement includes more than $1 billion in new funding for Disability Support Services (DSS). ” Retrieved from: https://www.disabilitysupport.govt.nz/about-us/news/budget-2025-improving-how-dss-pays-residential-providers.

Unfortunately, once you dig a little deeper, it is not quite as promising as it sounds. The $1 billion new funding is spread across 4 years. That means there will be an additional 250 million this year. Of that 250 million, there is 60 million allocated to boost residential care (which is in a dire situation)and $5 million for the High and Complex Needs Framework (which in my mind should be covered in the Justice budget). That leaves $185 million to cover everything else. $185 million is approximately a 7% increase on the previous year’s budget. To cope with an increase in numbers using DSS, from 50,000 to 52,000 (which is a mild prediction), we needed a 4% increase just to pay for the extra people needing services. Then, you guessed it, that leaves 3% for everything else, which is pretty much an inflation adjustment.

The total budget for 2025/6 is $2,769,178,000, and the previous year was $2,597,441,000. The increase in total budget year on year is $171,737,000. A percentage increase of 6.6%. This does not match with the above figure of $250 million increase – but this is because we have some costs now allocted under the Vote Disabled People budget ($20m), which previously we had a combined budget with Stewardship costs all together under Ministry of Disabled People (Whaikaha) and there are some costs which are under new initiatives and don’t show in the year on year allocation. Many factors change the comparators year on year, so it is difficult to compare apples to apples. With the shifting of ‘ownership’ of the budget, DSS has had categories renamed and reappropriated. As with all numbers, these can be manipulated to tell a great story, and we must always look at the details.

If you are not super familiar with how the DSS budget works, there are both Departmental (cost of the MSD department) and Non-Departmental costs. The non-departmental costs are all of the services provided, and these are broken down into 7 broad categories. From these 7 categories, they are then broken down again by types of services. This is where you will find the details on what the flexible funding budget is or what has been allocated to residential care versus aged care, etc.

For a summary of these numbers for the 7 broad categories, you can check out my spreadsheet:

All of this data has come from the Vote Disability Support Services budget estimates – I have just summarised the categories.

Now I will provide a summary of the breakdown of Community-based support services. This category is limited to the provision and purchase of services and supports for disabled people living in a community-based setting. This category is particularly important for families who use Individualised Funding and any respite services.

Budget 2024/25 for Community-based support services was $1,012,629,000, and Budget 2025/6 – $1,002,556,000. This is a decrease of $10,073,000 from the previous year. The decrease is approximately $10 million.

The challenge then is to understand what Community-based support services are and how that money is forecast to be spent. To do this, I looked at the Vote DSS Estimates pages for the breakdown. Flexible Funding is what we know as Individualised Funding. You can see these figures on p 12 of the link (page 50 of the doc), but I will share them here in a basic table:

Community-Based Support Services

For Budget 2025/6 there has been no ‘allocation yet’ of how this money will be distributed among the categories that fall under Community-based services. We have been provided with the numbers for how that money was distributed for 2024/5 and this shows, for example, that the Flexible Funding budget was 657,349,000. We don’t yet know what the figure will be for 2025/6 because we do not have a breakdown. This is the MYSTERY of the budget. We get an approximation but no details – YET. What we do know is that there will be a 10 million reduction in this budget, and THAT scares me!

What also concerns me is that they have still based the appropriation on 50,000 users (refer to page 51 of the doc). Yet, Minister Upston states in the article “Improving care for disabled New Zealanders” that “DSS provides essential services and supports to more than 52,000 disabled people, including about 7,200 people in residential care facilities.” So, we do have 52,000, but our budget is based on 50,000? Something doesn’t add up, and both you and I know that there are many who are not even making it past the needs assessment to be counted in either of these figures.

In addition to this, in the Independent Review, it was brought to our attention that the biggest overspends were Individualised Funding (including EGL) and Residential Care. We know that this was temporarily resolved by reducing flexibility for IF and putting Residential care entry on pause. When we review the Vote Disability Support Services (page 14 doc/page number 52) we can see that although the Budget for 2024/5 was for 10% of funds to be used for IF, we had an actual spend of 30%. This year, the target is once again 10%. I interpret this to mean it will be harder to get Flexible Funding – but I HOPE to be proved a cynic.

Now, I want to move on to the increase in funding for Residential Care

First, I must share again my backstory. I am not a ‘fan’ of institutions. I am not a particular fan of group home living or residential care, and all of the risks that are attached to living in care. I fully acknowledge the harm that has been done over the years in terms of abuse, and I can’t change what has passed. BUT, until community and government can provide assistance to support families raising complex children into adults, I believe there is and will be a need for a form of long-term care. For when the parents can no longer carry on, when the parents die or simply when it is appropriate for a young person to move out of home with 24/7 support.

For families like ours, raising a complex child, there are no usual stages of progress through adolescence and into adulthood. They do not magically become independent and move out into a flat, find a partner, go to Uni/tech or work or become financially, emotionally or physically independent. Most often their care and support remains the same, but the parent(s) are dealing with a much bigger body, sometimes needing to be lifted, manoeuvred or assisted in all aspects of daily life. The majority of people with significant and complex needs are not able to be left at home alone safely, and this means ‘someone’ else always needs to be available to assist, even when that person sleeps. This someone is most often a parent, sometimes a grandparent, sometimes a sibling, and there are many other possibilities. So often, this is termed ‘natural support’. That is a definition that needs a rethink.

Many family carers do not receive payment for the hours they spend supporting their loved ones and some do not want or expect it. Others, and I put myself in this category, believe that once a child has reached adulthood in terms of legal age, that child has the right to an independent life, which in turn allows the parent to have an independent life. The parent should then have the right to be able to choose to participate in paid work, whether this is work outside the home or as a paid carer for their loved one. I support the choice being available with funding to support whichever option the disabled person and their family need. The UNCRPD, which New Zealand ratified in 2006, also supports disabled people and their families to live independently and to be included in the community (Article 19).

One of my biggest fears, and one I share with many other parents, is the question of ‘what will happen when I am gone?’ That is why it is important to me, and to the Complex Care Group, that there are choices and suitable living options for disabled people with complex needs.

It was a welcome announcement to hear that there would be 60 million per year additional funding for residential care. BUT, I also know that it is the ambulance at the bottom of a cliff. However, for those who are already in crisis and waiting for entry, this may enable entry into residential care from 1 July 2025, and that is a welcome relief. I sincerely hope this money reaches the community it is intended to support.

Again, what is difficult is knowing how this will work. We already know that residential care still does not provide suitable options for all, and that aged care is used as a backstop, and that, in many cases, this is inappropriate. We hear there will be 3 bands for pricing in order to regulate the one-off contracts that were happening, and you guessed it – this SCARES me. Realistically, a person with complex care needs is always going to be a Top Tier candidate. We don’t know the ‘band’ values, but we do know that the previous contracted band rates were very low compared to the average independent bands.

In 2024, average banded rates for residential care by area ranged from 79.7 k to 94.7 k per annum. One-off contracted average rates ranged from 120.7 k to 279 k. Those figures are very, very different both in terms of banding to individual and by region (Independent Review, page 14, 2024). The reason for the variation is a combination of the increase in complexity of those entering residential care and increases in costs (overheads, staffing, property, etc). I am left wondering if those who are the most complex will fit into the new bands? Once again, I am only left with a slither of hope that there will be room for movement, because we know that ‘complex’ does not fit a one-size-fits-all approach, and we do not yet have this detail.

It also should be noted that the new pricing model only applies to Community Group Home providers. It does not apply to DSS providers of Aged Residential Care, residential care of children and young people in Oranga Tamariki, or providers of High and Complex Services.

And that’s it from me – there is so much unsaid in this budget. So, once again, we will wait for the details and in the meantime, raise the issues we can see with Disability Support Services and the Ministry.

Meanwhile, back home, I am happy to say that last night we had a ‘sleeper’. What a difference that makes.

All the best for those who live and support those with complex needs.

Cherie x