Ten months after qualifying rules for support services for disabled people were thrown into confusion, decisions on a new regime are yet to be made. Colleen Brown speaks to families left in limbo, including (above) Steve and Fiona McKenzie with children Jasper and Claudia. Claudia has been on a waiting list for residential care for five years. Photo: Martin Hunter
After years of lobbying, the formation in 2022 of a standalone Ministry for Disabled People was welcomed as a significant step forward in support services for about 50,000 disabled New Zealanders, their families and carers. The separate ministry, Whaikaha, was responsible for services formerly funded and allocated by the Ministry of Health. It also took on the functions of the Office of Disability Issues.
But less than two years later, on March 18 last year, the new coalition government effectively suspended several of the support services that disabled people and their carers could claim, citing a budget blowout.
Whaikaha was under financial pressure from the start, inheriting a complex funding system and a mix of policies and pilot programmes that had evolved during decades. Coupled with the increasing number of people seeking disability support (13% a year for the past 5 years) was the move during Covid – when services such as in-home support and respite care were not readily available – to relax rules for accessing services and equipment to support families with disabled children.
This “flexible funding” model, already being trialled in places, gave disabled people and their families more choice and control about what services they purchased, for instance, the ability to buy items such as a trampoline for use by a disabled family member and give carers a break.
But in September 2023, a unit of the Department of the Prime Minister and Cabinet warned the then Labour government that Whaikaha’s $2 billion operating budget was insufficient to meet needs.
The coalition government’s March crackdown came without warning to families; public communication was via social media. Restrictions were placed on various categories, including carer support and individualised funding (see “Support categories”, below). “Expenses” associated with respite, such as electronics, or recreation items that gave carers a break, and self-care services for carers and whānau, were excluded, as was travel-cost reimbursement for disabled people, whānau and support persons. Carers could no longer provide koha for volunteers providing support. Flexible funding was reduced to a few specified items or services.
The then Disability Issues Minister, Penny Simmonds, told Parliament Whaikaha was within days of running out of funding. (It was forecast to overspend its 2023-24 budget by $50-$65 million.) Among other things, Simmonds claimed, carers had been using taxpayer-funded disability support money “for massages, overseas travel, pedicures, haircuts” for themselves.
Despite extensive research within the disabled community, no one has admitted to receiving funding for pedicures. One organisation reported approving massages for carers who lift disabled family members daily.
In the uproar that followed, Simmonds was stripped of her portfolio and replaced by Louise Upston.
In the May Budget, disability support funding was increased by $1.1 billion over five years to cover an anticipated 6% increase in the size of the disability sector.
But 10 months on, many support services remain effectively paused.
One of Upston’s first acts was to appoint former senior public servant Sir Maarten Wevers to lead an independent review. No disabled people were part of the review team. The first phase of his report, released in August, found the delivery of support nationally was inconsistent and hampered by the way Whaikaha had been set up.
The report was brutal in its judgment of Whaikaha’s management of its financial responsibilities. It also said the ministry was disadvantaged by the ad hoc nature of “cabinet and ministerial decisions made on an issue-by-issue basis over decades”.
Its recommendations to manage cost pressures focused on two major cost growth areas – flexible funding and residential facilities, which together accounted for more than 80% of cost increases.
On August 15, Upston announced the fledgling ministry Waikaha would become a “standalone department” of the Ministry of Social Development (MSD), and stripped it of its disability support budget.
The delivery of support nationally was inconsistent and hampered by the way Whaikaha had been set up.
She also ordered a three-stage review covering budgets for support provider agencies, the flexible funding model and a system for monitoring within MSD. While stage one – a “rapid review of pricing” – was carried out, funding for residential care providers would be frozen.
The announcements left the country’s 15 needs assessment agencies (NASCs members of the Needs Assessment Service Co-ordination Associations) – which decide eligibility for and allocate disability support service funding – uncertain about how much budget they had left for the 2024-25 financial year.
In response, NASCs have effectively placed a halt on residential placements (in most cases, people moving from their family home into residential care) until budgets and MSD contracts are finalised. Criteria for residential care effectively restrict placements to the most serious cases, but NASCs have told the Listener they have insufficient funding even for urgent cases.
The disability community has voiced deep concern, saying the restrictions, especially on those wanting to move into residential settings, have left some disabled people in potentially unsafe situations and their carers in limbo.
At least one residential provider has advised a desperate family that admission criteria will remain severely restricted beyond the end of the financial year.
Just before Christmas, Upston announced a consultation round on “how the government should deliver disability support services that are fair, consistent, transparent and sustainable”. She expects to go to cabinet early this year with residential care pricing decisions. Decisions on assessment and allocation settings and eligibility criteria for flexible funding are expected later in the year.
Whatever the outcome, the disability community expects flexible funding – the brave move to give disabled people and their families more choice and control over the services they access – to remain tightly constrained.
Rough ride
Fiona Hoskins (Ngāpuhi) rattles off a list of her 18-year-old daughter Hineraumati’s rare and complex disabling conditions, shared by only 30 others worldwide. Like many parents and carers, Hoskins can easily recount the highs and lows of navigating the complex health and disability support systems. It has been a rough ride for the family.
Hineraumati (Ngāpuhi, Ngāti Mutunga, Tūwharetoa, Moriori) has experienced seizures since she was three.
Finding answers on how to care for her daughter has meant Hoskins has been grilled by health professionals about her parenting skills. She has trialled new treatments and had to manage relationships between her family and myriad different agencies to help Hineraumati live as well as possible.
Former minister Simmonds’ claims of carers spending public money on items like pedicures and massages deeply affected Hoskins. She felt stigmatised.
“This job of looking after Hineraumati is relentless. I can’t just hand her over to someone else,” she says. “I’ve had people question us about the funding we get for Hineraumati – I feel judged.
“The minister cast us all into one category – frittering our money away on painting our nails. Those comments play into all kinds of negative stereotypes.”
Despite extensive research, no one has admitted to receiving funding for pedicures.
Hoskins feels profoundly insecure. Like many in their situation, the Christchurch family lives on one income, although they own their own home. They have recently managed a two-year alterations process for Hineraumati’s changing needs, requiring an accessible bathroom and the use of a wheelchair. Hineraumati’s disabilities have isolated the family, an observation many carers make.
Hoskins, formerly an art teacher, and her husband, Heperi Harris, experience high levels of fatigue and stress. Hoskins’ GP helps her cope, but she has to manage Hineraumati’s needs as well as those of their other two children, one of whom was recently diagnosed with autism.
“You don’t get through life gracefully,” says Hoskins. “We were told we could get a ramp in six months if we were categorised as ‘super urgent’. We built it ourselves with whānau support – I was digging holes with Hineraumati’s seizure monitor strapped to me.
“If you don’t give the impression you’ve got your shit together, people constantly give you advice. I have to be solution-oriented in everything I do.”
In Auckland, the Ward family understand Hoskins’ situation. Ant Ward’s son Marshall, 14, the middle of three children, is autistic and non-verbal. Marshall has funding categorised as “very high” level to attend a special school. Finding support staff to help manage his out-of-school activities is problematic.
“Marshall is built like a rugby player, over 90kg, and at around 1.8m tall. He can be challenging to work with,” says Ward. “He needs constant supervision, lashing out when he’s frustrated, especially when he can’t communicate what he wants. He needs a trained support worker, but finding them is hard.”
The family is on constant high alert. Marshall loves water, turning on taps and wandering away; mood swings can happen within minutes.
Caring for him meant Ward had to give up his job as a software engineer. Marshall is too big for his mother, Gaylene, to manage on her own, so Ward must be there to help him get ready for school. The family used equity in their home to buy a scaffolding business, enabling Ward to be self-employed, because typically, employers don’t understand the constraints on families managing a child with Marshall’s needs.
The word “relentless” is used over and over by all families dealing with the disability system. They live a life few people can imagine. The Wards know no one else will do the hard yards for them; they’ve had to find information out for themselves, manage challenging situations day in and day out. It is a precarious life.
Ward is grimly philosophical: “We lurch from good phase to good phase with big dips in the middle. It’s hard to plan for the future. I can’t see Marshall being even semi-independent. I’ve trained myself to put on blinkers to the world, as to how it sees us, but it is still very hard.”
Marshall recently broke the screen on the iPad he uses to communicate. The Wards were worried whether it could be replaced under the new prescriptive rules. They were successful. Though relieved, they feel they have lost the choice over how they might best control any funding for Marshall.
Feeling normal
Using government funding creatively meant freedom for Alexandra’s Danielle Dunn, her husband Hamish and 9-year-old son Zac, who has complex disabling conditions. Before March 18, Dunn gained approval to use some of her flexible funding to cover half the cost of an electric bike. She can hook Zac’s trailer onto the back and pedal into the hinterland of Otago.
She believes respite should take many forms; it’s not just about sending your child off or having a person come into your home to look after them. Zipping along country pathways gives her a feeling of normality, just like other families. If she’d waited to apply for funding, it would have been a flat “no” after March 18.
“Being Zac’s mum is another whole education. Once you are in this disability world, you realise it has always been all around you and now you can see and appreciate it.”
She is concerned that many whānau are not receiving what they’re eligible for because the system is poor at telling families what types of support are available. Advocating for your own child is challenging, worse still if you don’t have the experience or communication skills to navigate the paperwork.
Dunn has discovered helpful information through other families but feels the government should help ensure disabled whānau are appropriately connected with available supports. She would prefer to choose how Zac is integrated and included into his community, so he is respected for who he is.
She questions why the government puts less trust in the disability community to spend public money wisely for their children than, say, those who receive Working for Families tax credits or Best Start payments. Even an annual respite allocation of a few hundred dollars is intensely scrutinised. “At what cost?” asks Dunn.
No end in sight
For Fiona McKenzie in Christchurch, the cost is incalculable. Her daughter Claudia, 26, has a rare chromosome condition. McKenzie hasn’t been able to pursue her profession as a TV director since her 30s. Instead, she manages Claudia’s life, and with residential placements now on hold, there is little hope that she and her husband Steve’s single-income status will be alleviated. “None of our time is our own. We wake when she wakes, we can’t sleep until she’s asleep and we have other people in our home most days,” says McKenzie.
“Our space is never just ours. We had plans for Claudia to move into a flat. We want to be her parents now, not full-time carers supporting Claudia 24/7 with all her personal cares and needs.”
The couple’s situation is unsustainable as they age. McKenzie finds the re-introduction of terms like “natural supports” (unpaid support from family/ friends) into policies especially alarming, viewing it as a way to reduce paid, trained support.
They are confronting the decision all families face: what happens to my disabled child when I die or can’t care for them? They fear that in care, their family member may be verbally or physically abused and unable to tell anyone. For those with family members in supported living or community residential homes, a huge amount of trust is placed in the staff.
Louise Upston has put a full stop on hope in our family. It feels like a sentence.
It has taken years to plan Claudia’s future living arrangements; when families are dealing with the day-to-day minutiae of care, the big decisions often take a back seat. McKenzie admits they should have started their planning earlier, agreeing that when families say they are ready, they were probably ready “three years ago”.
Claudia has been on the waiting list for a residential position with a provider for five years, but no placement has materialised. McKenzie suspects Claudia’s needs are too high.
The family has had numerous follow-ups with the provider and, feeling they were getting nowhere, recently approached another provider. There was a glimmer of hope that Claudia would soon have a place of her own, but the “hold” on residential placements since the August 15 announcements crushed that.
An email on November 22 from Claudia’s NASC stated that the current government “pause” for residential care would remain in place beyond June 2025 except in extreme cases that the family will never meet. “We have had one holiday in 26 years without Claudia,” McKenzie says. “I have no hope left. Louise Upston has put a full stop on hope in our family. It feels like a sentence. The same system that tells us to get on with it has abandoned us.
“This slams the door on our future freedom, our identity away from our daughter and happiness. The cruelty, the toll it has taken, is immense.”
A lack of trust in government, feelings of despair, and grief are spoken about constantly by the disability community, particularly on social media. The families spoken to by the Listener are typical of hundreds across New Zealand.
Providers frustrated
No support service provider interviewed by the Listener would be named for fear of jeopardising their contracts – one spokesperson who had been happy to be named withdrew their consent, worried about a backlash. Several providers say the sector is historically underfunded and has fallen behind inflation by more than 25% over the past decade.
Service providers tire of offering to help, to be part of any ministry-driven solution. They cite unworkable changes imposed without the input of disabled people, families or providers, as with the recent policy and operational announcements.
They are unsure how they will survive the policy changes, which they say leave them without adequate funding to remain solvent. The government rejects this, saying providers have more money this financial year than last. Some providers say they will close, resulting in some disabled people being forced to live in situations at greater risk to safety and wellbeing.
One provider offering opportunities for disabled people to live in the wider community fears not only for its own organisation but for its charges, whom it says are now without any choice and control over their lives. It cites a family where a parent is having to give up work because there aren’t enough funded support hours for their disabled daughter to live at home, and no residential option is available.
A small residential care provider specialising in care for people with high and complex disabilities requiring 24/7 support had modified a dwelling in the expectation that two fully funded people would move in. One gained funding approval before August 15, the other did not, despite the paperwork being lodged before that critical date. Both individuals must be funded for the service to be viable, leaving the families desperate and the organisation out of pocket.
Needs assessment agencies report their frustration that the database now administered by MSD does not support a system with a range of flexible funding arrangements. They agree living within budgets is important but argue that historical underfunding, inflation and disabled population growth mean that even with the five-year funding boost announced last May, budgets to support families remain inadequate.
There is consensus throughout the sector that a transition period, with short-term funding and considered communication with the disability community, would have helped ease the situation, instead of the “cold-turkey” approach adopted so far.
Lisa Martin, director of the Complex Care Group that represents families with dependents with complicated disabling conditions, has the government’s March 18 announcement suspending Whaikaha’s purchasing rules seared into her memory. She says alarm, disbelief and confusion spread rapidly throughout her disability community.
Martin believes one of the most significant impacts was the ban on the travel allowance, which families with disabled children could use to reimburse travel costs for support whānau to come to give them a break. Its cancellation places another strain on households with disabled youngsters who won’t tolerate strangers.
The lack of respite options nationally for those with complex care needs is a longstanding issue – another example of underinvestment, in Martin’s view. She is cynical about some of the funding changes. “People are being awarded respite care-hours for a family member instead of the previous flexible funding options, but if respite isn’t available for them to purchase, the funding doesn’t get spent and there is cost saving for the government.”
Dane Duggan, chief executive of Autism NZ, shares Martin’s concerns. It is taking families up to three years to get a diagnosis for their child in the public system (a private consultation costs up to $5000). The number of autism spectrum disorder diagnoses is growing. In the past, a diagnosis of autism alone would mean access to support and resources; that is no longer the case.
Martin rails about shortsighted planning, lack of consultation, poor communication and the lack of robust evidence for the changes being implemented. “It is [affecting] families in a very inhumane way. If the minister is aware of all of this and still intends carrying on with these measures, we are in a much worse situation than we thought.”
Spending ‘uncontrolled’
Upston’s ministerial portfolios include Social Development and Employment, Child Poverty Reduction and Disability Issues. She has a child with disabling conditions. She fully supports the 2016 national Disability Strategy, which states: “New Zealand is a non-disabling society … where disabled people have an equal opportunity to achieve their goals and aspirations, and all of New Zealand works together to make this happen.”
She believes her actions to date uphold that vision. She told the Listener there is currently “uncontrolled and unsustainable spending” within the sector coupled with unfairness in the distribution of funds nationally.
The sector isn’t underfunded, she says. “The issue is more about managing the current funding systems than an injection of additional resources.”
Unpicking the range of current funding contracts, a better understanding of how disabled people are assessed, and determining how different contracted organisations meet their obligations are critical to creating a fairer, simpler, more transparent funding structure, she told the Listener.
She says the feedback she gets in her travels suggests an overhaul of support services is broadly supported. “We need to stabilise funding the sector by understanding the causes of any inequities, and then to strengthen the delivery of the available resources so that disabled people and their families have real choice and control over their lives.”
She acknowledges communication could be better, but says timely communication can sometimes be a casualty of the rapid changes occurring as officials dig into the funding complexities. She urges the disability community to get involved in the consultation phase.
The lack of usable data to plan for the needs of disabled people and their families is also in her sights. “The current postcode inequities have to be cracked. I am determined that where you live should not define what resources you receive. I also worry whether the most disabled people are receiving the level of support they need to live a good life.”
She admits this transitional period is creating uncertainty and anxiety but she is determined to rectify the issues. “We can and should do a lot better, and although challenging for the sector in the short term, we will end up with a better system.”
Frequent Listener contributor Colleen Brown is a former Counties Manukau District Health Board elected member who currently chairs advisory service Disability Connect. She has an intellectually disabled son, Travers.
Disability sector
A 2022 Ministry of Health demographic report gives a bald picture of the number of disabled New Zealanders receiving state funding in the 2019-20 financial year, when just over 40,000 disabled people were allocated disability support services.
■ Nearly half had an intellectual disability, 10,739 had autism and 8319 a physical disability.
■ Half lived in their own or their family’s home; 24% in rentals including Kainga Ora or council flats; 16% in a community residential home and 12% in a rest home.
■ The vast majority were assessed as needing either a “very high” (30%), “high” (38%), or “medium” (29%) level of support. Just 3% needed a low-level package.
Main categories
Carer support
Enabling full-time unpaid carers to take time out. Includes a contribution towards the costs of a substitute support person. Allocated to 22,291 disabled people and their families (as of 2019-20).
Home and community support services
Supports people to live at home: 8125
Community residential support services
Provides 24-hour support in a community home: 6704
Individualised funding
Allows people to directly purchase home and community support services and respite services: 6990
Supported living
Helps people to live independently: 4195
Respite services
Funds short-term breaks for carers, including funding for facility-based and home-based care: 3707
Funded family care
Allows people to employ their parents/whānau with whom they live to provide care: 527