Day 73 - Newsroom - Extra cash for Disability Ministry but cost pressures loom

Extra cash for Disability Ministry but cost pressures loom

An increase in funding for Whaikaha has been welcomed by the ministry, but with ever-rising demand for disability services it is unlikely to be enough

By: Emma Hatton

Newsroom: 31/05/2024

Disability Issues Minister Louise Upston has confirmed the Ministry of Disabled People Whaikaha will get an extra $1.1 billion until 2028. That’s on top of its baseline funding of just over $2.2b. Photo: Lynn Grieveson

The amount allocated to Whaikaha Ministry of Disabled People is 24 percent more than what it received last year, including $80 million before the Budget to see the department through an overspend.  

The ministry will get an extra $1.1 billion until 2028. That’s on top of its nominal baseline funding of just over $2.2b.  

Whaikaha (and Disability Support Services within Health before that) has regularly come up short on its appropriation.  

In the 2023 year it was $41.2m, in 2022 it was $31m and in 2020 it was short $103.7m. 

Minister for Disability Issues Louise Upston said the extra funding allocated in this year’s Budget would go toward support services, including support for people living in their own home, respite, residential care and the high and complex framework strategy.  

It is primarily to deal with the increase in people eligible for support and inflation.

NZ Disability Support Network chief executive Peter Reynolds described it as a “sticking plaster”.

“It allows the sector to stand still but not move forward. We’re grateful for the funding confirmed in today’s Budget but this is the bare minimum required and won’t extend support to more people in need or increase the quality of care.”

Whaikaha has confirmed the extra cash does not mean the guideline changes to flexible funding will be changed back, which limited what carers and disabled people could purchase with their needs-assessed budget.

An independent review is currently investigating how services might be delivered, and for what, in an effort to prevent regular overspends and cost pressures.

And while increases in volume and inflationary pressures are significant, the ministry faces a raft of cost pressures that remain unfunded. 

Widening the eligibility for who can access disability support services has been on the radar for some time.  

In early 2023, a briefing paper prepared for then-minister Priyanca Radhakrishnan mooted widening eligibility to those with fetal alcohol spectrum disorder. 

“Regular requests are also received asking for [disability support] eligibility for those with other neurodevelopmental conditions, particularly for access to carer support and respite services,” officials noted. This includes requests for ME/Chronic Fatigue Syndrome, Tourette’s, ADHD and Long Covid to be eligible.  

It was agreed that Whaikaha would scope a policy work programme to review widening eligibility. It’s unclear where this work has got to under the changed Government.  

Widening the scope of eligibility would add pressure to the current funding, something officials are aware of. This happened when autism became an eligible diagnosis.  

“This happened in 2014 and at the time additional funding was not sought to add this group. Numbers of people with autism who receive [disability support] has grown considerably, contributing to ongoing funding and service delivery pressures,” the briefing paper said.  

A question mark over widened eligibly compounds a question mark over a family carers claim going through the courts which could also see the ministry responsible for approximately 2500 new employees.  

Two family carers claiming they are employees of the ministry for the work they do were overturned by the Court of Appeal last month. They will be filing for leave to have the case re-heard by the Supreme Court.  

Another upcoming cost sits in the work Whaikaha is doing to shore up the High and Complex Framework – how intellectually disabled people who have committed a crime are treated. 

The current system is in crisis with ‘risk register’ documents released to Newsroom showing bed space has been in emergency mode for years. 

A report to Whaikaha from the Forensic Coordination Service shows a number of risks including an inability to provide bed space and complete assessments in the legislated timeframe are happening. Photo: Supplied/Whaikaka

The most recent intel available, which is for the three months to September 2023, describes how the secure service for youth had been closed for most of the quarter. Care coordinators relied on the Youth Court adjourning hearings, so as not to receive referrals.  

“However on three occasions, the Youth Court has declined requests for adjournment and proceed to make a care order. Care coordinators are left with no option but to designate these people to the [secure service] knowing full well that rehabilitation needs will be compromised due to the staffing shortages,” the briefing said.

It details how the secure service assessment bed has been unavailable in the Canterbury region for 18 months, referrals were being turned down by the Dunedin service due to staff shortages and there was no psychologist available for the region because their sole employee had resigned.

In Waikato the secure service was operating above its available capacity and the services in Auckland were at capacity. 

Whaikaha Specialist Services group manager Rachel Daysh, who has worked in the sector for years, said a combination of staffing shortages and infrastructure challenges which began some years ago has led to the current problems.

“This actually goes back to a combination of issues relating to the closure of institutions in New Zealand, where institutions were the training ground and the learning ground for a lot of health professionals and support staff who were working in the industry.  

“There’s a lot of training and support particularly around mental health professionals, but not formal training around people in the disability enterprise and so the system became quite dependent on people who were part of what I would call an ageing workforce, but they also became quite dependent on overseas supply.” 

The staffing shortages were compounded during the Covid-19 pandemic, although Daysh said in the past six months workforce issues had eased slightly, but the situation was by no means out of the woods. 

In 2021, Ombudsman Peter Boshier released his report into the High and Complex Framework. 

He found the Ministry of Health had failed in its duties.  

“Problems had built up over the years, especially capacity problems. The Ministry of Health didn’t do what was needed to address these problems, and stop them getting bigger,” Boshier said when he released the report. 

“This meant people needing framework services were not always able to be placed in suitable accommodation. In some cases, court proceedings were being deferred, and some people were spending longer in prison while waiting for a hospital placement.” 

When Whaikaha was established, the delivery responsibility of the framework fell to them, however the statutory obligations remained with Ministry of Health. 

Daysh said structurally the system was designed well but things fell short operationally.  

“One is a workforce capacity problem and the other is an ageing of fitness of infrastructure problem.” 

Both problems are addressed in Whaikaha’s recently released strategy to get the framework working properly.  

“The implementation plan will have different responses to the different sorts of issues. So some regions are simply at physical capacity and the system requires more beds to be built. 

“And they’re already being implemented now with Treasury to prepare programme business cases to build that infrastructure.” 

Exactly how much it will all cost is another question mark.  

Day 71 - Newsroom - Effect of Govt cuts on disabled people ‘cruel’ – report

Effect of Govt cuts on disabled people ‘cruel’ – report

The disability community was shocked when Whaikaha announced sudden changes to flexible support funding. But those rollbacks are just the tip of the iceberg.

By: Laura Walters

Newroom: Wednesday 29/05/2024

A series of changes to disability supports have caught the nation's attention. Now a new report has quantified the cumulative effect of this Government's policies on people living with a disability. 

A collection of cuts and new policies across disability support, health, education and welfare are having a disproportionate and cumulative impact on some of the country’s most vulnerable people, according to a new report.

The report, shared exclusively with Newsroom, shows families that include someone with a disability may be paying up to $5500 more a year under this Government.

This was due to policies like the return of the prescription co-payment for some people, the increase in public transport fares, the decision not to lift the minimum wage as far as recommended by Ministry of Business, Innovation and Employment officials, and the changes to the free school lunches programme.

The report, A Thousand Cuts, published by social justice collective Fairer Future, models a range of scenarios based on typical families. The report finds each family is worse off under this Government than the previous administration.

A carer not in paid work (due to caring) whose children used public transport to get to school would incur higher costs of $63.23 per school week, and $2463.90 a year, under this Government, according to the report’s modelling;

A person whose disability was not recognised by existing disability settings, who needed prescription medicine and relied on public transport to get to work, incurred higher costs of $49.92 a week, or $2602.72 a year;

An Auckland sole parent on minimum wage who had a child with a disability and used public transport faced higher costs of $128.15 a week, and $5,742.88 a year;

A disabled person, who was not eligible for disability support and was on Jobseeker for those aged 20-24, faced higher costs of $176.43 or $703.89 a year (depending on whether they receive a disability concession card for public transport);

A disabled person who could only work part-time with flexible support, faced higher costs of $2.09 or $3.38 a week (depending on their age), or $109.17 or $176.43 a year.

“This assessment paints a picture of a cruel government directly responsible for greater distress in the lives of people, especially disabled people, in our community,” the report said.

While people with disabilities had long been forced to get by with inadequate funding and support, there had been some improvements in recent years – particularly in the form of more flexible funding models, it said.

But disabled people had the rug pulled out from under them when Whaikaha announced the changes to the flexible support framework, in March.

Along with the removal of flexibility and autonomy, decisions by the Government relating to welfare indexation, benefit sanctions, minimum wage rises, public transport costs, prescription co-payment fees, fair pay agreements and pay equity claims and free school lunches, were all having a cumulative impact, it said.

About 1.1 million people – or a quarter of the population – have a disability, according to the Ministry of Health. Meanwhile, 2021 data from Stats NZ found disabled children and children in households where someone is disabled are more likely to live in poverty.

Households that included someone with a disability were already struggling to make ends meet. This means that policies that impacted those already facing deprivation had a disproportionate impact on people with disabilities.

While the Government had promised a significant boost for frontline disability services in this week’s Budget, those in the community are worried things may get worse.

Disabled Persons Assembly chief executive Mojo Mathers told Newsroom that people in her community were feeling “overwhelmed, anxious, afraid about what else might be coming”.

“Some parts of our community are really, really distressed and others are just angry.”

Many were only just getting by, or had faced a lifetime of feeling under-valued, she said. But things felt worse now than they had before.

The announcement in March was like “a bolt out of the blue”, she said, adding that ahead of the Whaikaha announcement there had been genuine hope in the community.

While then-minister Penny Simmonds painted a picture of frivolous spending, with people using the flexible support model to pay for pedicures, haircuts and massages, Mathers said this funding model was essential.

Mathers said one person who responded to a recent DPA survey had ordered a new wheelchair when Whaikaha suddenly announced the funding changes. They were told to cancel the order, forcing them to continue using a wheelchair that was too small, and had given them pressure sores.

Others had similarly painful stories, including a solo mum, who was using the funding to keep her disabled child safe from their abusive father.

Meanwhile, children and families would no longer be able to access disability support programmes, like Riding for the Disabled or swimming lessons, during school hours due to the Government’s truancy policy. 

Mathers said it wasn’t just about disability-specific funding. When cuts were made elsewhere it put more pressure on the disability system.

“The more cuts are made in other parts of Government, the more precarious disabled people’s lives are.”

The report said not enough attention had been paid to how the impact of cuts could add up, and cause further distress to people simply trying to get on with their lives.

Fairer Future and ActionStation campaigner Max Harris said there was a powerful depth of feeling about the Government’s recent decisions.

“There’s real fear, insecurity, anger, and sometimes even hopelessness,” he said.

While the Whaikaha funding changes in March had caught the nation’s attention, it was important to understand the cumulative impacts, so the broader community would join the call to reverse Government policy.

The disability community was calling for the restoration of full funding and flexibility for Whaikaha, a change of course on benefit indexation so that benefits are tied to wage growth or inflation (whichever was higher), and an end to suppressing minimum wage growth, Harris said.

Fairer Future was also calling for an increase in income support, a wiping of debt owed to MSD, and an end to the Government’s recently re-introduced sanctions regime.

“With a recession being felt deeply, now’s the time to provide resources to those who are struggling – it’s not the time to hold resources back.”

Meanwhile, the disability community and advocates are also planning to protest at Parliament on Wednesday, in response to Whaikaha’s flexible funding cuts.

Newly appointed Disability Issues Minister Louise Upston said disability support services were one of the essential frontline services New Zealanders relied on, and the Government would give them a significant funding boost in Thursday’s Budget.

“The coalition Government wants the best outcomes for disabled people, their families, and those who care for them. It’s important they have ongoing support that meets their needs and helps them lead a good life,” she said.

Upston reiterated the Government’s position that Whaikaha’s changes to the flexible funding model did not constitute an actual funding cut, despite it limiting what funding people could access.

The Government recently increased funding for Whaikaha to see it through the remainder of the financial year, and had set up an independent review to examine what could be done to strengthen the long-term sustainability of disability support services, she said.

“It’s important the disabled community has certainty around the support services they can access, and taxpayers know they are getting value.”

Last Updated 30/05/2024

RESOURCES

• Fairer Future

• A Thousand Cuts (PDF)

• Press Release on Scoop

Background - Newsroom - I wish my role were redundant

I wish my role were redundant

by Jane Carrigan

Newsroom: 30/12/2023

5 Wishes for 2024: I hate this work as a disability advocate. It is so unnecessary. It is exhausting. I wish it wasn’t needed.

Comment: In my role as an independent disability advocate, I spend my life fighting for those who cannot fight for themselves. Those I advocate for have in common that they care full time for their family members with high needs, particularly those with an intellectual disability, providing round the clock support every day of the week every week of the year.

Often, they do this alone, with little if any family or government support. Life is either not predictable or too predictable. Chaos and violence are something many families must try and self-manage, poorly equipped and unsupported as they are in this role. Wellbeing is not a reality.

For many family carers the work is exhausting and thankless. For the intellectually disabled person, life in the family home (and even those in residential care) is limited by a system which largely ignores their needs – rendering many, if not most, completely invisible.

‘Mainstream’ is what we are told by people who have their own lived experience of a physical or sensory disability, but little comprehension of what life is really like for these families and individuals.

This desire to mainstream everyone and a steadfast refusal to provide specialist services means those with high needs and their families can no longer access local support, early intervention, day programs or respite, as they were once able to. This is because they are no longer provided; yet there is nothing out there to mainstream to.

A recent report (yes, another one) posed the question – why do people with intellectual disabilities die on average 20 years earlier … it seems no one knows.

I know. The individuals and families I fight for are ignored by the same disability support services the Crown is legally responsible for providing. Living, as many of them do, in sub-optimal residential or family homes. Isolated by loneliness and poverty. Hidden by the disability narrative that doesn’t want to consider these issues because it impacts negatively on the brand that is now disability. Everything in disability land must be positive and happy.

So it is in that context, as an independent disability advocate, that I wish for the following:

1/ Give family carers a fair go

The Government must allow family carers to be part of the community. This cannot occur when family carers are exploited 24/7.

For example, accept that the people they care for have a lifelong disability and abolish the pointless, intrusive, dishonest, and demeaning annual needs assessments and outcome plans from across a range of departments.

For individuals, appoint a case manager, one who isn’t lumbered with hundreds of other high-needs cases to manage. Work to care and identify harm. This also gives people a central point of contact. The involvement of this role benefits both the family carer and the individual with the intellectual disability.

Cut out the lucratively funded middlemen, who for too long have administered the disability support system for the government. Instead pay family carers directly – a tax-free, inflation-adjusted, weekly allowance. This isn’t as costly as it sounds. In fact it would sit at about two-thirds of what a realistically funded residential care funding package should cost.

Instead of shovelling people with a disability into rest homes (where they no longer count in the disability budget) the Government should bring back day programmes, meaningful respite, and expect competency and integrity from the service providers of residential care, so they can trust this service once more.

This would be genuine social investment, enabling the good life of the intellectually disabled person ahead of the patronage that currently secures closed tendered contracts benefiting third parties to assume the Crown’s responsibility.

Discrimination against high needs intellectually disabled remains rife, especially from within the disability sector. So conflicted as many are by their own personal lived experience and which sits front and centre in their decision making.

This Government has talked a big game about efficient and effective governance. The disability funding sector provides it with the perfect case study to highlight wanton waste.

2/ Audit disability services

Have the Auditor-General conduct a forensic audit of disability support services spread across its various Ministries including Education, Ministry of Disabled People, Ministry of Social Development, Health, Oranga Tamariki and Housing which operate in their own confined silos.

None work together. Who misses out? The intellectually disabled and their careers. Return probity, competence, and unconflicted decision making to the public service domain that is disability supports services; irrespective of which of the numerous silos it sits within.

3/ Abolish the two-tier disability support system

Disability is treated differently depending on whether you’re funded by ACC, the Ministry of Health or the Ministry of Disabled People.

It was always the original intention of ACC that health and disability support services would be absorbed into the ACC system. Instead, we now have both systems completely beset by bureaucratic obstacles; ACC now acts as little more than an investment bank dabbling in disability.

Health and disability support services presents a 30 year failed experiment, losing a generation of families and individuals within it.

4/ Comply with ratified international treaties

Yeah right! We have signed up and ratified international treaties since the 1980s – yet all we do is cherrypick what we want and repeat on high rotate whilst ignoring the intent, much less the application of the actual treaty.

Once upon a time we funded hospitals, institutions and residential care adequately. It is not that as a country we do not have the money for a competent health and disability system. We do. What we now lack is the will to implement common sense, much less apply our committed legal responsibilities.

Disability alone acts above the rule of law, ignoring as it does repeated Court of Appeal decisions directing it.

5/ Make me redundant!

My last wish is personal. I hate this work. It is so unnecessary. It is exhausting.

There is a chasm between the disability rhetoric and its reality.

Bureaucrats of the public service – you want to be rid of me? Make me redundant and, if not, at least give me a day off.

JANE CARRIGAN

Independent disability advocate Jane Carrigan has repeatedly gone to court to fight for the rights of disabled people and their carers.

Background - Newsroom - Disability funding not best practice – experts

Disability funding not best practice – experts

Experts say disabled people deserve greater flexibility and choice when it comes to managing the money they qualify for, and that the Government is a long way off its promise to make disability support systems fair

by Emma Hatton

Newsroom: 20/06/2023

Disability experts say the Government is not delivering on the promised Enabling Good Lives strategy and want greater flexibility for people receiving Individualised Funding.

The funding is a type of budget that people qualify for based on a needs assessment, and can be used to pay for services such as home support and respite.

There are rules around what the money can and can’t be used for and the funds are managed by a private host agency which oversees the spending.

The agencies are paid per client by the government to do this work.

John Taylor, a member of the National Enabling Good Lives leadership group, and executive director of the supported living agency Community Connections, said there was no reason such a high level of control was needed over the money.

“In my view there’s only two reasons to have host providers: one is because they think disabled people can’t manage their own money, and the other is they don’t trust disabled people to manage their own money – and I think the latter probably applies a bit more.”

He said the intent of Enabling Good Lives fundamentally clashed with the design of Individualised Funding.

“Under Individualised Funding you can still only do a very limited number of things and you have to have it managed by somebody else, and our intent of Enabling Good Lives was basically ‘why wouldn’t you just give disabled people and their family the money, and let them figure out how to get their own support?’ We do that with every other population of New Zealand who require funding for a purpose.

“Working for families, whatever else it is, we give people money and we trust them to do that for themselves [but] we don’t with disabled people. So the level of control around this is, in my view, really quite revealing about how the Government sees disabled people as essentially incompetent or untrustworthy.”

“This is a 20-year-old model that has not matured enough to really embrace the EGL approach.” – Jade Farrar, National Enabling Good Lives chair

In 2011, members of the disability community developed the Enabling Good Lives approach with the intent of increasing choice and control for disabled people and their families.

Enabling Good Lives holds a vision that disabled people and families can bring about positive change when they have control over resources (e.g. personal budgets with options of how these are managed), access to an independent ally, access to resources to build regional and national leadership and investment in disabled people, families and their communities.

The National Enabling Good Lives Leadership Group provides high-level strategic advice to assist community and government initiatives to align with the approach.

The Ministry of Disabled People Whaikaha, which came into effect with the health reforms last year, promises to transform the disability system in line with Enabling Good Lives principles.

Its performance and governance deputy chief executive Russ Cooke told Newsroom that Individualised Funding was consistent with the approach.

“The current Individualised Funding scheme is flexible. It allows disabled people to exercise control over how, when and where the supports are provided and who delivers these supports. The approach also means people have control over the quality of services and are able to change Individualised Funding hosts if they feel it is necessary. They are not locked into any supports that do not meet their needs.

But the leadership group chair Jade Farrar said this was not the case.

“This is a 20-year-old model that has not matured enough to really embrace the EGL approach. Where you might find people assuming that it’s aligned with EGL is because of good marketing.”

He said people should have the autonomy to decide how the funding they were allocated was used.

“Unfortunately for Whaikaha and many other agencies, they consider the only way that disabled people and their families can receive support is by support workers… So there should be work happening to enable disabled people and families to purchase supports, whatever that means for them. That could mean mainstream services in the community, that could mean technology purchases, that could mean holistic things happening for them.

“And as far as I’m aware, because I’ve knocked on a few doors in recent weeks, not only is Whaikaha not working on this, it seems there’s work going on to solidify the IF model.”

The Ministry of Disabled People pays host agencies $980 a year, per client, for managing their account and a one-off $550 set up fee.

In the year-ended June 2022 there were just over 10,000 people receiving Individualised Funding packages, about half of which were worth less than $5,000 a year.

David Todd, who is the managing director of the research firm Synergia, has conducted work and research into personal budgets and disability funding for 20 years.

He said the evidence showed when it came to small funding allowances it became difficult to see the value of a host provider.

“My experience has been that it becomes difficult for host providers to provide much value for the level of package that people get.

“My work has looked at some of the administrative burden that there is to administer a package, whether it’s a small value or a big value… and for very small packages, [the admin cost] becomes almost the value of the package itself.”

“It is important that government and the public have confidence that money appropriated for disability supports is spent on disability supports regardless of the amount of funding received” – Russ Cooke, Whaikaha

Todd worked in the UK on their rollout of disability personal budgets in the early 2000s and then until 2020 on individualised funding projects in New Zealand.

“Our work has always shown that about that $5,000 package per annum, the actual cost of administering one of those packages through a host provider and some of the other components that are needed actually outweighs the package that someone actually gets from a total cost perspective for the Government.

“So, where possible I’ve been a strong advocate to say that people with particularly smaller packages should have the choice of whether they want to use those providers or not.”

Russ Cooke said it was about supporting people to utilise their funds, as well as ensure it was being spent responsibly.

“Like all government agencies we are obliged to ensure financial appropriations such as Individualised Funding are used for the purpose to which they are allocated.

“It is important that government and the public have confidence that money appropriated for disability supports is spent on disability supports regardless of the amount of funding received.”

Overall the department spent $11.5m in fees to deliver $229m worth of funding.

The country’s largest host agency Manawanui only has a small number of low-funded clients – about 50 who qualify for less than $2,000 a year.

But chief executive Marsha Marshall said sometimes they required just as much – if not more – support than those who qualified for more.

“It’s not the size of the allocation that drives the level of support required – it the person’s capability or capacity to manage it.

“I agree that in many circumstances people with low allocations do not require any support – but the small number we receive, in the NASC’s [needs assessor’s] opinion do.”

“The determination of whether a person with a low allocation needs to have a host provider is made by the NASC and is highly variable. If the NASC thinks the person will need some coaching or support to make purchases, they will send them to a host.

“If not – they are more likely to receive Carer Support for the lower amounts, which does not require any intermediary support.”

Cooke said people did not have to accept Individualised Funding.

“IF is not mandatory or the only mechanism to provide funding to disabled people. If people wish to use contracted service providers, this remains an option.”

Under the traditional model, the department purchases support services from agencies by contract. They then deliver support either in community facilities or in the homes of the service recipients.

Farrar and Taylor said it was disingenuous to suggest there were appropriate alternatives to Individualised Funding.

Todd said people should have the option of using a host agency or not, but added the support needed to be there to help people manage their budgets on their own.

“I do think it could be [done] better to be able to support people who’ve got it, and it doesn’t even have to be small packages, but any size if there’s good planning, tools, online resources that they can access about how to best use their money, where to get advice and support and that sort of stuff.

Farrar and Taylor agreed host agencies could have a role to play in the personal budget system, but only if it went alongside real alternatives.

“As part of a range of choices, absolutely. There will be people and families that say, I don’t want anything to do with this, I don’t want to manage the payroll, I don’t want to manage people, frankly, and I think that that’s a fair comment to make,” Farrar said.

“But do we need to be resourcing them at the types of levels that have been suggested. No, I think the management of IF funds should be open to universal providers like the many accounting firms that have online portals available today. It should be a universal approach, not one bespoke to disability supports, or like you’ve already heard, what is the opportunity for MSD to administer funds directly? I think that idea is very interesting.”

Minister for Disability Issues Priyanca Radhakrishnan said it was concerning to hear feedback that Individualised Funding was at odds with Enabling Good Lives.

“I would ask Whaikaha to continue that conversation to tease that out a little bit more because I think the end goal, the outcomes that we’re all seeking, is more choice and control over decision making for disabled people and that’s that’s the pathway I’d like for us to continue down.”

But she said added the system was different to other government benefits and should not be compared.

“This is not a benefit. This is about – what are the types of supports that can be accessed in various ways. So the host agencies do play a specific role, but I do understand that there is flexibility in the choices that individuals can make as well and that’s the bit that I would like to see continue.”

Day 3 - Newsroom - Disability host agencies’ ‘value’ to be considered in funding review

Disability host agencies’ ‘value’ to be considered in funding review

Just ‘days’ from running out of funding, Whaikaha limited what disabled people and their carers could spend their money on. But what about the millions shelled out every year on external agencies paid to keep an eye on the spending?

by Emma Hatton

Newsroom: 21/03/2024

Analysis: It’s unclear whether the review into how disability funding is allocated will look to scrap or reduce the use of externally contracted host agencies that help disabled people manage their money.

The Minister for Disability Issues, Penny Simmonds, would only go so far as to say “we do need to look at a range of things”.

When asked specifically if this would include host agencies, she said it was about ensuring value.

“We’re going to have to look at a number of things like that. But we have partnerships, we’re working with host agencies, so we need to work with them and ensure that we’re getting the right value.

“So consultation is happening now. We’re getting a lot of feedback as you would expect and from that a really good sense of the things that work well, and then we need to start looking at where perhaps we need to tighten up some of those regulations.”

Disability supports and how they are administered vary greatly and some options are only available in some parts of the country. However, Individualised Funding and Carer Support – which received the bulk of the attention after the Whaikaha announcement on Monday – is available nationwide.

Carer support is managed through a claims process via the Ministry of Health, but Individualised Funding is different.

People receiving an Individualised Funding allowance are assessed by a needs assessment provider who then decides how much money they will get.

However, they don’t have this money deposited into their bank account, like a student eligible for student allowance does or someone on Jobseeker, for example.

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Instead, host agencies (there are nine) are contracted by Whaikaha to sign off on every purchase, and pay out or reimburse the disabled person.

It is the only government support that requires third party oversight and intervention in this way.

The government pays the agency a set-up fee for each new disability client, as well as an annual fee to manage their funds.

In the past the fee was a percentage of a client’s overall funding allowance, but was changed after a review in 2017 to be a set-fee for all.

The Ministry of Disabled People pays host agencies $980 a year, per client, for managing their account and a one-off $550 set-up fee.

It does not come out of an individual’s personal budget, but it does come from the same departmental pot.

Figures from the minister’s office state that each year more than 3000 new disabled people become eligible for support.

If thousands more clients are being onboarded each year without a substantial change in total budget funding, then it makes sense that the money has started to run down. The other aspect is that with the loosening of the guidelines under the previous government people actually were spending more of the personal budget they had been allocated.

This suggests Whaikaha – and before it the Ministry of Health – may have relied on people not spending their entire allocation, because they could not access it in reality.

With 3000 new people each year more than $4 million of new fees are charged by host agencies to onboard them – let alone the almost $1000 each charged for the existing ones.

In the year ended June 2022 there were about 10,000 people receiving Individualised Funding packages, roughly half of which were worth less than $5,000 a year.

Which raises the question, is it good value for money to shell out $1000 a year, to keep an eye on $5,000 (or even less)?

Manawanui chief executive Marsha Marshall said the organisation was very comfortable that this was the case.

“All nine hosts work with disabled people every day to support them to manage their role as employers of carers, budgets within the guidelines set by Whaikaha and accurate auditable payment of public funds. The current fee model has been in place for a number of years under the Ministry of Health and now Whaikaha policy,” she said.

Manawanui is the largest host provider and is chaired by former Prime Minister Sir Bill English.

It only has a small number of low-funded clients – about 50 who qualify for less than $2,000 a year. However, Marshall said sometimes it was them who needed the most assistance.

Last year Newsroom examined the use of host agencies by Whaikaha and spoke to research firm Synergia’s David Todd, who has worked and researched personal budgets and disability funding for 20 years.

He said the evidence showed when it came to small funding allowances it became difficult to see the value of a host provider.

“My experience has been that it becomes difficult for host providers to provide much value for the level of package that people get.

“My work has looked at some of the administrative burden that there is to administer a package, whether it’s a small value or a big value … and for very small packages, [the admin cost] becomes almost the value of the package itself.

“Our work has always shown that about that $5,000 package per annum, the actual cost of administering one of those packages through a host provider and some of the other components that are needed actually outweighs the package that someone actually gets from a total cost perspective for the Government.

“So, where possible I’ve been a strong advocate to say that people with particularly smaller packages should have the choice of whether they want to use those providers or not.”

Arguments have previously been made that the Ministry of Social Development would be a much better department to administer the funding, given it administers other government supports.

But for some, the use of a host agency is helpful, and even necessary.

Home care support (which is primarily what individualised funding is used for – the other part is respite) may require employing a carer.

Employment obligations, tax, Kiwisaver, ACC and the like then becomes the responsibility of the disabled person, and host providers help people get this right.

Whaikaha deputy chief executive Amanda Beckmann would not say whether host providers would be on the chopping block, but her comment, provided to Newsroom, suggested not.

“Hosts play a vital role in helping people understand how to use and manage their Individualised Funding.

“Whaikaha will work with the disability sector, which includes IF Hosts, and the community to ensure our funding is being allocated equitably and within the purpose for which it is intended.”

Previous comments to Newsroom from Whaikaha have confirmed the agencies are in place to make sure funds are not misused.

“It is important that government and the public have confidence that money appropriated for disability supports is spent on disability supports regardless of the amount of funding received,” Whaikaha’s Russ Cooke told Newsroom last year.

And that’s where the nub of the issue seems to lie – why are disabled people not trusted to spend their own money?

RESOURCES

• Manawanui