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
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. READ MORE: * Govt seeks assurance over claims disability funding system breaks law * Disabled Ministry plans for up to 2500 new carer employees
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."
