Yellow Azalea

Recently, the findings from Recommendation 5 & 6 from the Independent Review of Disability Support were announced – supporting a return to flexible funding and the promise of a new assessment tool. For many, this is great news. For my family and for other families supporting those with the most intensive support needs, it will barely make an impact and doesn’t solve the problems we are facing. We, the group with the ‘highest needs’ are unlikely to be supported adequately as a result of this.

You can read the Minister’s announcement of 3 September here. In this announcement, Hon. Louise Upston says, “My absolute priority is to ensure the disability support system is more consistent, transparent, sustainable and fair.” While these priorities may be said with genuine intention to improve the state of the disability system (this certainly needs to happen), these priorities do not bring any certainty to the group of disabled people and their families who have the highest needs. It does not acknowledge that those complex disability needs are underfunded and that services for those with the highest needs are scarce and in some areas, non-existent. It also does little to acknowledge the growing number of people with extremely high needs or those with complex needs who need cross government policy and systems that align between disability, health and mental health.

While the announcement was full of promise that we will have a new assessment system in place for new users of disability supports by February 2026, there was little detail divulged about what this might look like. For those with complex needs using disability support services (DSS), detail is important. Trust is low in our community. We have seen policy and guidelines come and go that does not acknowledge the unique nature of those with intensive support needs and the family carers supporting them. While the complex care group (where I am Board Chair) has strongly advocated about our unique needs through consultation and submissions to Government and agencies involved, we continue to see lateral ableism in policy and creation of guidelines that will suit a certain demographic of disabled people. Meanwhile those with the highest or complex needs continue to be ‘othered’ as exceptions.

An example of this was in the recent realignment of operational policy and funding for Residential Care services. A new banding allocation tool is being introduced under the guidance of providers and the taskforce, with no input from the users and families of those with complex needs (the most likely recipients of residential care). Within the current guidelines, those with highest needs in residential care will still be subject to ‘exception’ and will have to make individual application for funding above the proposed maximum of $900 per day. On inquiring about how the exceptions would be handled, I was informed it will be a case by case basis – surely, this is not consistent, transparent and fair?

Alongside this, although the Government has committed additional funding to Residential Care over the next 3 years, the entry into residential care is still restricted to priority groups such as offenders, those in long term hospital care and those aging out of Oranga Tamariki. Families supporting adults with complex needs are barely likely to gain entry unless a crisis occurs – a crisis such as harm to the disabled person or parent, injury or death of a carer. It is that dire. Our family while not ‘having this crisis’ yet, are excluded by many providers of residential care because of the intensity of needs and inadequate funding support – it becomes a conundrum when the care designed for those with the highest needs, makes those with the most intensive needs apply as exceptions.

Because of the way residential care changes have been made, I am nervous about who will design the new assessment tool. Will it once again be those providing the services – the NASCs, Hosts and providers? Will they actually look at research or the community to truly come up with a fair tool that will meet the needs of the ‘highest users’ of the system? Or will we once again, become the exceptions. Put in the ‘too hard basket’.

Those with complex needs are expensive. The Independent Review,2024 (p. 12) showed that of those receiving disability support services, there is a small percentage of people who have a budget between $333,000-1.2 million per annum. This is the top 0.2% (100 people) of those using DSS. The next group, which made up 30% of the client packages for DSS, are supported with between $35,420-$333,000 per annum. There is a marked difference in the needs of a person with a $35,420 budget to those with a $333,000 budget per annum. This made me curious as to how many within that 30% were truly ‘highest needs’.

Prior to the Review, within my role with Complex Care group, we had been unable to find satisfactory data to show just how many people within New Zealand require intensive support. Accessing data such as this is valuable to understand how big the complex care community is for future budgeting and services. The Review partly answered this question, which was a step in the right direction. Following the review, in 2024, I placed an OIA request to determine more detail about the top 30% by budget, of those people receiving disability support services. Firstly, I asked for a break down of those receiving support between $35,420 and $333,000. I wanted to know how many received over $105,000 pa, as this is the current level to which a person is sent to the Panel for review of these services (and largely considered highest or complex needs) . I also asked for a breakdown of living arrangements of those in the top 2 tiers, to identify how many were in residential care, aged residential care or living in community or with family.

Here is the table of results:

Table 1:

Group	Less than  $35,420 pa	$35,420 to  $105,000 pa	$105,000 to  $333,000 pa	Over  $333,000  pa	Total
All people	34,543	9,866	4,179	158	48,746
% of people	70.86%	20.24%	8.57%	0.32%	100%
People that are  allocated residential  supports	131	3,414	3,025	113	6,683
People with an ARC  YPD (*) coordination	19	496	335	<5	854
Living with whānau	*DSS is unable to determine how many people are living at home or  with family. Disabled people may live with family in any service  delivered outside of the residential facility or group home. To collate  this would require DSS to review each file and determine who lives at  home, with family or in residential facility or group home. This part of  your request is refused under section 18(f) of the OIA, as the  information requested cannot be made available without substantial  collation or research.
Under 14 years	15,816	804	51	0	16,671
14-21 years	8,318	1,240	248	25	9,831
Over 21 years	10,409	7,822	3,880	133	22,244

What these figures tell us is that we have 4,337 people (approximately 9%) of those receiving disability supports in the category that requires panel review (over $105,000). It is likely, that there are more than this, as some disabled people also have health or mental health conditions and receive support funding via other Government Ministries – this is not shown in these statistics. We could therefore, safely estimate that a minimum of 10% of our disabled population are complex.

To give some perspective about budgets – a person receiving support funds of $105,000 per annum, could buy around 54 hours of support worker hours per week, which may be used for a combination of personal cares, household management and respite. Most families supporting those with high and complex needs are on call and need to be available 24 hours a day – this leaves 114 hours for them to provide ‘natural’ support. I point this out, as most people with high and complex needs can not be left alone for safety reasons. When a family provides this natural support, the human rights of the family carer are being violated, as they are effectively on call and unable to work outside of the home. It’s very easy for a person (taxpayer) to look at these numbers and think wow – this family receives over $100,000 to care for their child/adult child – but when you break it down like this, the amount does not really equate to the supports that are needed to care for someone 24/7 and most of that money is going to wages and giving someone employment.

In effect, what this often means for those supporting a person with complex needs, is that either they will use most of their support hours to pay a support worker, or to pay themselves as a support worker as they are unable to work another job due to the demands of caring in the home. This is why flexible funding doesn’t make a lot of difference to the highest needs community. Sure, we need flexibility too – because if we can’t find a support worker, we will also try to find the best way to support our family and recharge to sustain the caring, whether this means we purchase items for the disabled person, take a massage to recover or use a respite facility to take a break. We do want and do appreciate flexibility and prior to flexibility restrictions many used flexible funding to pay for family to come and care or to pay for accomodation outside the home. But the reality for most of the people supporting the complex needs community is that the hours allocated are used to pay for the physical supports needed – changing nappies, making beds, feeding, bathing, supervising, dealing with behaviours, taking their child to appointments etc. There is no money left in the budget for anything other than ‘buying support work hours’ because the funding is insufficient for flexibility. Without provision of these supports being adequately funded the onus of care and expenses falls back onto the family.

In the complex care community, we know that if a family is not supported adequately to care for those with complex needs, the disabled person will end up living in residential care. By the time, a child leaves school (between 18-21 years), and the family struggles (like we have) to find appropriate support and services, they are burnt out, getting older and typically struggling to find respite options that are suitable. Without services, respite supports and budgets that provide safe and professional care, the family collapses and the only option is entry to residential care.

Currently, as per the table above, in the 30% of the disabled population receiving the highest supports, there are 7388 people in either residential or aged care. Ironically, only 4337 of these people have budgets over $105,000. This could indicate that there are a lot of people in residential care who do not need 24/7 care and/or there are people in residential care with funding that is shared (this contravenes Article 19 of the UNCRPD). It is widely known, that there are many people living in residential care since deinstitutionalisation took place some 40-50 years ago with what today would not be considered high enough needs to enter residential care. I am not suggesting they should move out, or that they should they exit residential care to make way for higher needs, for many these places are their long term homes now. But, it is critical to think about the emerging population who will go into residential care in the future when these people age or die out. Apologies, to put it so bluntly.

What this means is that the additional funding being tagged for residential care is not going to be enough to keep up. If someone exits residential care and creates a space – then they are likely to be replaced by someone who has higher (more costly) needs. This is not being taken into account for planning.

Of the almost 10% with budgets over $105,000 p.a., 3478 are in residential care, and 859 are still living in community, most likely with family*. While it is hard to determine who is living with family, most supported in group homes are using a residential care option, while there will be some using choices in community living models – this is unlikely to be high due to only being available in three areas of New Zealand. A person with high and complex needs is unlikely to be safe using any other option.

With another 248 people (see Table 1.) aged between 14-21 receiving over $105,000 per annum, don’t you think we need to start planning housing, infrastructure and workforce to accomodate these people who will most likely enter residential care? If 80% of these people go into residential or aged care (current rate of those with high packages in care), we need another 200 beds over the next 5-7 years. Perhaps, the government is just hoping that enough people will die to accomodate the new entrants? There is certainly no evidence of future proofing in the Draft Disability Strategy for those with complex needs.

My interest is now in how the announced changes will be implemented and how the complex care community are supported under these. While the Minister of Disability Issues has repeatedly reinforced that those with the highest needs are a priority and I want to believe this is true, there are many issues that will not be ‘fixed’ with a return to flexible funding and the introduction of an assessment tool.

Here are some of the issues families supporting those with complex needs face:

1. The financial budgets allocated most often do not meet the needs – there is too much reliance on family support (termed natural support) – this is a lifelong issue
2. There is a lack of services for those with high and complex needs e.g. facility based respite, community participation activities or vocational services, residential care beds – over 1,000 disabled people live in aged care!!
3. Those with high and complex needs usually require supports from health, mental health and allied therapies and these are under pressure and not providing the supports needed, forcing families to forgo their respite budget on items that should be paid for each of the Ministries responsible and meaning ‘family carers’ do not get a break from caring
4. High and complex needs who are not ‘offenders’ or under Oranga Tamariki are a lower priority for entry into residential care, creating more pressure on families caring for them for longer periods of time
5. There is no indication that the disabled people requiring the most intensive support will be supported in the ‘draft disability strategy’. This draft strategy is focused on achievement, productivity, and government outcomes with no understanding of the percentage of people with the highest needs who will not ‘fit’ within these outcomes and successes. There is no strategy for residential care, respite, lifelong education and for the family/whanau supporting the disabled people with the highest needs.

If this Government truly wants to support the disability community and in particular those with the highest needs, they will need to implement strategy, policy and actions that match the ideals of being consistent, transparent, sustainable and fair for everyone. Right now, as a member of the complex needs community I fear they are not going to deliver on any of these without radical change to the needs assessment, an increase in the budget to support those changes, strategy that crosses Ministries, and cross-party agreement.

Therefore, I ask the question again – do you think the changes will adequately support those with the highest needs?

Note: I have used the terms highest needs, complex needs, high and complex needs, disabled people requiring intensive support somewhat interchangeably in this piece. There are currently many and varied defintions about these and using ‘monetary’ support as a means of identification is not a true and accurate record, as there are many complex people who are underfunded. However, this is the best data I currently have to work with that represents the community I am talking about.

Cherie & Mitchell