Day 85 - The Spinoff - What happens when disabled people lose flexible funding

What happens when disabled people lose flexible funding

By: Shanti Mathias

The Spinoff: 12/06/2024

A recent rally by Disabled People Against Cuts emphasised why flexible funding is important

(Image: Teirangi Clever. Additional design by The Spinoff)

In March, sudden changes to purchasing rules highlighted the ongoing struggles of the disabled community – and advocates say extra money allocated to Whaikaha in the budget can’t come close to countering chronic underfunding.

Cherie Cawdron has driven the same exact loop around her neighbourhood hundreds of times: driving is one of her son’s favourite activities, something he’d like to do all the time. The petrol costs add up quickly. Her son, now 20, has a number of complex, overlapping disabilities and health conditions: an intellectual disability, autism, a physical disability, and a medical condition that requires the use of an oxygen machine at night to help him breathe. Caring for him isn’t a simple task, because his individual needs don’t fit into exact boxes that the government system often wants to check off. As well as the petrol costs, last month, her family’s water bill was $198 and her power bill was $450 – a consequence of as many as four baths a day, which help soothe her son. She and her husband both work part-time to help accommodate his care, even though she’d like to work more. In two decades of caring for her son, Cawdron has learned to understand what he means when he points at things to express what he wants – but this isn’t something anyone could walk into the house and pick up. 

Cawdron is a spokesperson for the Complex Care Group, a network that connects the families of young people living with overlapping disabilities with high care needs. “There are lots of hidden costs,” she explains. “This is the reality for a lot of parents: emotionally, knowing you can’t get a break is huge. You need to be available all the time.” Respite care, allowing someone else to care for a disabled person so their primary caregivers can have a break, is vital for many families looking after people with high care needs. So Cawdron was one of many people shocked by a sudden announcement on March 18 from Whaikaha, the Ministry for Disabled People, announcing changes to how disabled people and carers can spend their disability support and equipment funding. 

The date is etched into the minds of everyone I spoke to for this story. The revised purchasing rules meant that carers of disabled people could no longer provide koha for “voluntarily” provided support; instead, money for respite care had to be under employment arrangements. Travel costs for disabled people, whānau and/or persons providing support were excluded too, as was “self care”.

The announcement came via a Facebook post. It was midday on a Monday. There had been no consultation with disabled people and their carers, and the comments were promptly turned off. The changes were effective immediately.

An announcement, then the fallout

Penny Simmonds, then the minister holding the disability portfolio, said that the changes to the rules were necessary, as Whaikaha was was “within days” of running out of money – and some of the spending was going towards unnecessary luxuries for carers. “We’ve got such a broad criteria at the moment that the funding has also been used for massages, overseas travel, pedicures, haircuts,” she said at the time.

The webpage announcing the rules is a glimpse at the complex bureaucracy that disabled people and their carers have to navigate: alternatives to funding from Whaikaha include money available from the ministries of health, education and social development; grants and charitable donations; the Total Mobility transport scheme; and specialist services run by different government departments. 

Facing criticism for the handling of the announcement, Simmonds and Whaikaha apologised for the way the changes had been communicated. Updated purchasing rules were released on April 24, but did little to ease the concerns of the disabled community, and Simmonds was eventually replaced by Louise Upston, who is the minister of social development and employment and sits within cabinet. Since then, there’s been widespread protest from organisations working across the disability sector with an open letter asking for reversals to the rule changes, better resourcing for disabled people across the government and greater involvement of disabled people and their whānau in decision-making signed by dozens of organisations. 

Etta, a person in a wheelchair with short hair wearing a funky purple, red and mustard jumper, is speaking on the parliament forecourt into a microphone

Etta Bollinger speaks at parliament

(Photo: Teirangi Klever)

Etta Bollinger, a spokesperson for Disabled People Against Cuts, says that directly after the changes were announced in March, it “felt like the world closed in”. The process of limited funding can make disabled people feel guilty. “Disabled people are acutely aware that we’re prioritised against each other,” they say. “In a fully funded system, an individual receiving support wouldn’t have to think about what is going on in the rest of the system.” 

While the changes to the purchasing rules are particularly notable for their lack of engagement with the people most affected, Bollinger points out that just because a funding source doesn’t have the word “disability” in it doesn’t mean disabled people aren’t touched by it. The return of the $5 prescription fee from July 15 for those who don’t have Community Services Cards will be particularly expensive for the many disabled people who need regular medications. Disabled people without Total Mobility cards who use public transport have lost the half-price transport discount. Inaccessible – both financially and physically – housing puts disabled people at risk too. “Underfunding across the board impacts our ability to be part of society,” Bollinger says. “We need to push against [cuts] until disabled people have autonomy across their lives.” 

There was a funding increase to Whaikaha in the budget on May 30, of $1.1bn over the next five years; however, the funding is contingent on the results of a review commissioned after the changes to individualised funding and respite care in June. “It’s really important funding – respite care comes out of that funding channel,” says Phoebe Eden-Mann, a policy analyst at CCS Disability Action. As far as she knows, the panel conducting the review are not disabled themselves, and haven’t (yet) consulted extensively with the disability sector. “If they’re not talking to us, how do they know what we want?” asks Colleen Brown, board chair at Disability Connect, an organisation that supports people with disabilities and their families. 

There’s no timeline for when the results of the review might be released. “There are so many reviews – we don’t think we need another review,” Eden-Mann says. From the perspective of CCS Disability Action, the needs are well-established: more money is the solution, not more panels and reports. 

What do changes to funding mean practically for disabled people and carers?

Nick Stoneman, a disability advocate living in Christchurch, lives with a number of visible and invisible disabilities. He currently receives funding for home help, managing domestic tasks that are difficult for him to do himself, and had been hoping to get individualised funding for other support, including treatment for pain in his hips caused by being in a full-time splint as a baby, but has been denied. 

“There’s so much admin – I have to go to the doctor every three months,” Stoneman explains. “The process is very constrained – it could be simplified, but it won’t be. Because people have abused the system in the past, there’s no allowance for a high-trust model, so we’re viewed suspiciously.” He’s spent hours trying to navigate the support system for himself, as well as the clients he works with. 

Cawdron feels exhausted when she contemplates how the purchasing rule changes have impacted her. “It’s a 24/7 job, so the only way of getting a break was to have that respite care. That’s been taken away by the restrictions.” She feels certain what the consequence of reduced respite care will be. “If the parents don’t get a break, they burn out, then kids end up in residential care – and residential care is truly expensive. It’s short-sighted.” Technically eligible for a disability allowance, Cawdron hasn’t bothered to apply – the $78.60 a week isn’t worth the hassle of the forms and receipts that getting the payment would require. 

Over and over, people in the disability sector emphasise that it is the change to the flexibility of the respite care funding that will hurt people the most. The new funding rules don’t recognise the practical ways that families and communities look after disabled people. “Say you have whānau who know and understand your child and regularly visit from Hamilton to help look after them, they have to be employees – instead of being offered koha, which is a recognised way to acknowledge support,” Brown says. Relationships are affected: she knows many carers can get anxious about doing something as simple and ordinary as calling a friend, worrying that their loved ones are expecting to be asked to help out.

Nick Stoneman and Phoebe Eden-Mann

Photos: Supplied)

‘Stuck in limbo’

For Cawdron and Stoneman, as well as thousands of others within the disability sector, changes to disability funding make an immediate difference to their lives. But as well as practical details they need to negotiate, there’s an emotional consequence. The sense that vital funding can be eliminated at the whims of the distant government creates huge amounts of anxiety. 

“It makes me feel like I’m a third-class citizen in my own country. Our needs are not valued, our voices aren’t heard, and people don’t want to understand what our needs are,” Stoneman says. Many disabled people would love to work, he says, but employers aren’t willing to understand how to accommodate those needs. “We’re stuck in limbo if we don’t have an understanding employer.” 

Stoneman is also slowly paying off debt to MSD from income support payments, at a rate of $20 a week – another source of stress, especially when that money would make it easier to pay electricity or phone bills. “It would make such a huge difference if that debt could be wiped,” he says. 

four people wearing masks in front of a statue with signs saying 'pedicures? overseas travel? I WISH) and "Disabled people deserve dignity" and "We did nothing wrong a*seholes, we were born this way"

The suggestion that disabled people and their carers were using funding for luxuries like pedicures and overseas travel was particularly upsetting

(Image: Teirangi Klever)

In the past 20 years since her son was born, Cawdron has heard lots of statements from different ministers, filled out more forms than she could count, been woken in the dark when her son needs her. But the suddenness of the announcement about the cuts, and the failure of the budget to change anything, felt like a “smack in the teeth”. “This has been the first time I felt completely devalued as a parent and carer by the public,” she says. “It’s completely discounted families – it’s made me feel like I’m not a person of any value.” 

Her son will need care for the rest of his life: when she thinks of the future, she imagines more and more needs assessments, more and more forms. She finds it difficult to understand why disability funding is treated as if it adheres to the rules of supply and demand. “The funding is still capped, even though there are increasing numbers of people with disabilities.” One day, she and her husband might not be able to care for their son any more: what will happen then? 

The changeability of what funding will be available in the future is particularly stressful. “People living complicated, difficult lives have this added layer of uncertainty, which has created a lot of anxiety,” Brown says. “The problem is that there is no plan for the disability community between governments.” Future governments could change the rules back, or add different funding categories, or reduce funding further, making it difficult to plan. “Disabled people and families muddle on as best they can, not knowing what comes next … we’re an inconvenience, that’s what we hear.” 

Last Updated 17/06/2024

RESOURCES

• The Spinoff

• What happens when disabled people lose flexible funding

• Cutting sorely needed supports for carers is cruel and harmful It’s a cruel dismissal of what parents and caregivers do

• There’s no need to make emergency housing harder. It’s hard enough already.

• What can disabled people expect in the budget? Disabled people are used to a small piece of the national pie.

Day 65 - The Spinoff -What can disabled people expect in the budget?

What can disabled people expect in the budget?

By: Robyn Hunt

The Spinoff: 23/05/2024

OPINION

The finance minister says Whaikaha is in line for a funding boost, but disabled people won’t be holding their breath, writes Robyn Hunt.

The mother of all budgets in 1991 was the last time I remember feeling pessimistic, or anything much, about a budget announcement. Disabled people are used to a small piece of the national pie.

That budget was presented by the first woman minister of finance, Ruth Richardson. Nicola Willis is the second. I hope history won’t repeat. 

This budget is being released in a climate of uncertainty and confusion on several counts. Firstly, there is the critical disability support fund. Despite clarification from Whaikaha about the more restrictive rules for individualised funding, there is still a lack of clarity around how they apply to each disabled person. 

This anxiety and distress is about a complex funding system, designed for disability-related support only. It may come with personal support such as helping people get up in the morning, with showering, toileting and eating, and respite support. It may provide home help so someone can live independently. Equipment services can also provide essential technology such as wheelchairs. Wheelchair funding has also been reduced.  

Some disabled people are not eligible for any support from this fund or any other of the complex streams of disability funding.

The term “care” is sometimes used in a way that focuses on deficit rather than enabling or supporting. While it is appropriate for parents of disabled children and young people to have support to provide their care, many disabled adults control or want to control their own support in a more equitable and transparent system. 

Support funds should enable people to make their own decisions and live the best life they can, to participate in their communities in every sense of the word “on an equal basis with others”, as the Convention on the Rights of Disabled People (CRPD) says. It’s hard to do that if the supports you need are severely restricted or denied altogether. I hope the increase in funding to Whaikaha that the finance minister has indicated will make a difference, but if it comes with too many caveats and limitations that focus on a narrow understanding of what support could and should be, it may be a backwards step.

Disabled people are also deeply upset by the government’s wish to anglicise the name of “our” ministry, fought for over decades. The name is part of that ownership. People are also anxious about the independent review of disability services, where panel members don’t have any background, in-depth knowledge of, or association with disability. The ministry may be under threat before it has a chance to prove itself is a widespread concern.

The budget announcement comes in the midst of cuts, downsizing, withdrawals and policy reversals that have a cumulative and disproportionate effect on disabled people and their families. 

While MSD benefit rates, distinct from disability support services, but including the disability allowance, have increased from April 1 this year, the previous government indexed these benefits to average wage growth. Now, benefits will be indexed to the consumer price index (CPI). The Ministry of Social Development noted that this switch would disproportionately affect women, Māori, Pasifika and disabled people if no other changes were made. This could fuel inequality over time, and the extra costs of living with disability are already significant.

Public service cuts include disabled public servants, people who have critical contributions to make to the work of the public service in relation to their knowledge and experience of disability, and who may find it harder to find work in a tough labour market favouring employers.

There is a shortage of safe and accessible housing in areas where disabled people, and an increasingly ageing population, can easily access everyday services. Public and social housing stock needs to be more flexible, but not enough attention is given to good accessible design and there is no adequate modern New Zealand building access standard. 

Public spaces, particularly shared spaces, are becoming more contested with mixed use, for example the potential conflict between cycle lanes and pedestrian access to shops, businesses and services. Some disabled people feel unsafe when venturing into the community.

The reinstatement of the $5 prescription charge (with exceptions for older and high-use people) will create an added burden for some. The $15 for specialist scripts remains a regular expense for many disabled people.

Recent public transport subsidy cuts for children and young people will affect families with disabled members. Another rising cost. 

Other issues, such as family violence and abuse relating to disabled people, particularly women, the need for more and better paid support people, and education support for disabled children and young people also need funding.

There is hope. Disabled people are fighting back. An Aotearoa branch of the UK-based Disabled People Against the Cuts has been launched here by younger activists. There have been demonstrations in some main centres, with a planned parliament rally on May 29. An open letter has been signed by many disability organisations.

There is strong public support for reinstating the Whaikaha funding. A recent poll commissioned by Talbot Mills for the Fairer Future coalition found 66% of people support fully reinstating support and equipment funding for disabled people and carers. Majority support for reversal of the cuts came from all three government coalition party supporters.

Last Updated 02/06/2024

RESOURCES

• https://thespinoff.co.nz/politics/23-05-2024/what-can-disabled-people-expect-in-the-budget

Day 33 - The Spinoff - There’s no need to make emergency housing harder. It’s hard enough already

There’s no need to make emergency housing harder. It’s hard enough already

By: Siobhan Rosenthal

The Spinoff: 22/04/2022

OPINION

Trust me, I know: I’ve been living in a damp, violent hotel in central Auckland for six months and counting.

I get it, Minister. I really do. You want us out of emergency housing. And believe me, so do we. I have been living in emergency accommodation in a hotel in central Auckland for six months and counting. That’s despite the fact that, as a disabled person with children who recently fled violence, my need for social housing is classified by MSD as the highest priority possible. I consider myself one of the lucky ones, though: a grandmother I met recently has been waiting in a motel with her mokopuna with special needs at the top of the so-called priority waitlist for eighteen months. Believe me, we’re more fed up with it than you.

You really don’t need to make it harder for us, Minister, with your new verification processes and eligibility checks. It’s not easy to get into emergency housing. Take my case: despite the fact that a social worker at my local MSD office agreed that the danger in my home was too high for me to remain, and paid for my kids and I to move, when it came to emergency housing, a different employee from MSD’s national team decided I did not meet the criteria. I spent three nights in a hospital where medics didn’t want to discharge me because there was nowhere for me to go, and then another night failing to sleep on a hard chair in the emergency department because the hospital was full and that was the best they could provide.  

After I was finally discharged from hospital, I moved to one of those “unofficial” former backpacker lodges for the homeless like the one that burnt down in Parnell this month. We slept eight in a basement room with no fire exit. Only when my legs gave out completely and I couldn’t climb the stairs at the lodge did MSD relent and put me in a hotel. 

That was OK for a while, until I made the mistake of being visibly Jewish.  I lit candles in the window of my room for Chanukah, and the next day there was a swastika painted on the door. It took three weeks for MSD to accept that this was unacceptable and move me again.

I’m careful to make sure no one knows my ethnicity in the hotel I’m living in now, but it’s still not easy. There is constantly so much family and gang-related violence here that the group kitchen, for example, often becomes a dangerous area. This isn’t just inconvenient, it’s potentially life-threatening: I almost lapsed into a diabetic coma this week when my blood sugar fell to a dangerous level. This was due entirely to being unable to cook for myself in the group kitchen (due to the violence) and having to rely on the motel’s irregular deliveries of evening fast-food meals. 

Oh, and there was also the month I spent in a damp basement room with increasingly failing lungs, begging the hotel to move me. Fortunately, my children aren’t exposed to this: their father and I have agreed it’s better for them to stay with him for now, and to see me for daytime visits. But this deprives us of a normal family life. It’s not a cushy option, Minister. We’re not here because we have any choice.

Laying more obligations on people seeking emergency housing and forcing our MSD managers to check on us more frequently won’t help the problem. If there’s one bright light in the system at the moment, it’s the pastoral care offered by the MSD integrated housing managers. I’ve had two, and both have made it clear that they really, really care. They’re already doing a lot; checking on my application with Kainga Ora and fielding calls from support agencies. At a time when the public sector is facing huge cuts, why double their workload by forcing them to check on me every four days?

I’ve been a Kāinga Ora tenant for 18 years – it’s no walk in the park Kāinga Ora is New Zealand’s biggest residential landlord, housing more than 180,000 vulnerable people in more than 67,000 properties. One longtime tenant shares her experience.

Besides, what precisely are they supposed to encourage us to do? Move into a tent? I’ve already done your Ready to Rent programme; the government-funded, semi-compulsory course for those of us on the social housing waiting list. On the course, I was made to sing the “If you’re happy and you know it” song and heard the suggestion that homelessness is the result of financial irresponsibility and that a budgeting course would make us irresistible to the private sector. Trouble is, even when I’d proved I could provide references and read an electricity bill, not a single rental agency – even the one that ran the course – was prepared to return my calls. Perhaps they knew, as I did, that there was zero chance of getting a private landlord to make disabled home adaptations, like installing a ramp or bathtub. 

The only post-Ready to Rent support I’ve received is a text offering me another MSD course, this one on the thrilling topic of how to send an email. Like most disabled people, I have no option but to wait in the social housing queue – a queue that is longer for us than anyone else.

All this is leading to increasing difficulties with a local charity that cares for pets of people fleeing violence and abuse. Initially this was a wonderful service, but for those of us with complex housing needs it’s only a short-term fix. When I initially explained that it might take me longer to be safely housed than most of their clients, two separate staff members told me not to worry about our pets. Sadly, this early experience of friendly support has morphed into increasingly terse threats of a deadline and demands I produce a plan B. This has devastated my children, who trusted the word of a prominent charity when told not to worry about the fate of their pets.  

Honestly, Minister, the solution doesn’t lie in making emergency housing harder. It lies in that awkward, expensive, unglamorous idea of more affordable homes.

Last Updated 1/05/2024

RESOURCES

• https://thespinoff.co.nz/society/22-04-2024/theres-no-need-to-make-emergency-housing-harder-its-hard-enough-already

Day 2 - The Spinoff - Cutting sorely needed supports for carers is cruel and harmful

Cutting sorely needed supports for carers is cruel and harmful

By: Rebekah Graham

The Spinoff: 20/03/2024

OPINION

The government has tried to justify sudden disability support funding restrictions as prioritising disabled people over their carers. It’s a cruel dismissal of all the work that parents like her do, says Rebekah Graham.

On Monday, on Facebook and LinkedIn, Whaikaha, the Ministry of Disabled People, announced significant and far-reaching changes for disabled people, families and communities of support. Obliquely titled “Changes to Purchasing Rules and Equipment and Modification Services”, these changes effectively end many sorely needed supports for parents, whānau and caregivers who are engaged in the day-to-day care of their disabled family members.

Disability funding for families is available in five streams: 

• Carer Support

• Individualised Funding Respite

• Individualised Funding for Household Management & Personal Cares

• Enhanced Individualised Funding and Choices in Community Living

• Enabling Good Lives (EGL) Personal Budgets

Our family is part of the Enabling Good Lives (EGL) demonstration in Waikato. Based on EGL principles, our engagements with our tūhono/connector focus on our family goals, what we want to achieve for our disabled daughter long term, what we need to plan for, and what we need to do right now to ensure the wellbeing of the whole whānau throughout our child’s life course. 

This funding has always been flexible – even pre-Covid the tailored and flexible nature of the funding was there. 

We are hugely reliant on our wider whānau to provide additional support and care for our disabled daughter. It would be considered incredibly insulting to offer to pay whānau for this additional care work. However, with EGL we can offer a koha that covers some of the additional costs. Koha is a reciprocal practice – I don’t feel like I am taking advantage of whānau, nor are they left out of pocket.  

This ability to reciprocate, to prevent additional burden on whānau, is now gone. No more gifts or koha or recognition for unpaid care work. 

I get incredibly stressed and distressed by all the additional challenges we face. I worry for our daughter’s future. The statistics for disabled children and adults are grim; across every measure disabled people face significant disadvantage. Watching her have seizures is horrendously awful. Like many other parents and caregivers, I hold this distress in my body. No matter how emotionally challenging or physically difficult care may be, I still have to show up and provide care. 

One of the things that helps me release this bodily tension and relax is therapeutic massage. For family who are providing personal care or having to lift/move their disabled family member, a massage can help to relax and restore tight and painful muscles. 

This much valued form of respite is now gone. I can no longer use my funding to meet this need. 

Because of the nature of my child’s disability I, like many other parents in Aotearoa New Zealand, cannot leave her unattended or alone as one might with other children. I cannot hire a babysitter unless they are comfortable dealing with her medical needs, are able to call an ambulance if needed, and have a full driver’s licence to take her to the emergency room. I cannot leave her in the care of older siblings the same way one might for non-disabled children. 

As a result, at times I would need to take her with me as I engaged in work-related travel. I would use her funds to pay for any additional travel costs. This had the additional layer of widening her world, encouraging her independence, and familiarising her with travel beyond our hometown. The nature of her disability means repeated interactions are needed – far more so than for others. This supported our long-term goals for her independence and built an expectation into her world of being able to move about Aotearoa. 

That is now gone. No more travel-related costs are covered. My daughter must now be limited in her world. My ability to carry out my role is also now limited as a result. 

It has been an incredibly tough few years dealing with the additional layers of disability in a post-Covid world. Other parents know how rough it has all been. What has helped sustain me throughout has been the ability to have the odd weekend away. Nothing grand, just a comfy bed in a nice hotel room, a decent breakfast, an uninterrupted night’s sleep. A physical rest as much as a break from the additional mental and emotional load carers carry. 

That is now gone. No more accommodation or travel-related expenses for caregivers or parents. No more mini-breaks to restore and rejuvenate oneself so you can carry on. 

Whaikaha tells us it is “working to update our guidance to ensure it’s clear how disabled people, tāngata whaikaha Māori and whānau can continue to access disability supports within the updated Purchasing Rules”. In the comments section, Whaikaha promises that we can “continue to access disability supports”. 

However, the only disability supports that Whaikaha will now fund for our family are:

Employing someone privately to come into our home. This means I must now manage all that being an employer requires. 

Contracting a disability provider to send an agency care worker to our home. This means additional administrative work for me. It means our family must interact with a stranger – who may or may not be suitable or a good fit.

Sending our disabled daughter (on her own) to a respite care facility. This would be traumatising for her, leaves her vulnerable to abuse, and is impractical – there are no respite care facilities where we live. 

As well as being more expensive, difficult to use and impractical, none of the above options support our family’s long-term goals. They do not support our child’s emotional wellbeing. They do not meet my wellbeing needs as the primary caregiver. They do not support the EGL principles embedded into our family plan. 

Yesterday afternoon during question time, Penny Simmonds, the minister of disability issues, was asked about the changes by opposition MPs. She blamed the previous government for a “blowout in funds” and said “when funding is under constraint, the priority must be the disabled person”, and that funding “must be spent on the person with the disability”. This dismissal of all the work that parents like me do is cruel and harmful. It ignores that disabled children live in families – and that our wellbeing as whānau is collectively bound up together. Statements such as these callously communicate that this government does not care about me – or about any parent of a disabled child. It tells us that our lives and our wellbeing are less important than providing promised tax cuts to wealthy landlords.

Last Updated 26/03/2024

RESOURCES

• https://thespinoff.co.nz/society/20-03-2024/cutting-sorely-needed-supports-for-carers-is-cruel-and-harmful