More Delays... More Uncertainty with DSS

Just today the Minister Louise Upston announced that the Disability Support Services (DSS) Taskforce, which was established in the aftermath of the March 18 funding crisis would be extended by a whole year!!

This will come a real shock to the thousands of Disabled people, families, whanaū and provider organisations who have been waiting for a resolution to the flexible funding crisis and for the provider organisations who have been waiting for the funding freeze to be properly resolved.

The Minister made the announcement that funding had been put aside within this years Budget for DSS.

“We’ve demonstrated this in Budget 2025, where the DSS Budget received $1 billion in additional funding over four years – that’s about $250 million a year of new money…

This includes $60 million a year in residential care funding increases and about $190 million a year for increases across all DSS services for cost pressures, including care in the community”.

This delay of 12 months at the absolute minimum is another kick in the guts for the disability community who have had to deal with the uncertainty of not knowing when they will know when their disability supports, let alone the flexible funding that was so life changing, will return.

This is what the disability community told the government in 2025 that they want from DSS.¹

Some disabled people wanted DSS to provide individualised and fully comprehensive support to enable disabled people to live as good a life as possible.

Others wanted DSS to ensure disabled people have all the options available to non-disabled people.

A portion of respondents felt DSS should enable access to community and mainstream supports.

Many emphasized the importance of DSS providing support to carers, family, and whānau to ensure sustainability.

Respondents also shared how flexible funding was used to purchase goods and services not funded elsewhere, including items for self-regulation, community participation, and supports for independence.

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Funding uncertainties, more of the same

When the current government split up Whaikaha, taking the $1.1B from Whaikaha and redirected it to DSS the disability community was confused and concerned.

Many in the disability community had fought hard over many decades, arguing that Whaikaha should exist in the first place. So the attachment to Whaikaha was very personal for some in the disability community.

When Whaikaha was established and the funding was transferred from the Disability Support Budget from MoH, now Te Whatu Ora Health NZ over to Whaikaha some were very confused, arguing that, in effect, Whaikaha had become the largest service provider in the country.

And, many also in the disability community were even more concerned and worried when the $1.1B budget was transferred over to DSS within MSD.

Its fair to say that the relationship that many disabled people have with MSD is not positive.

The main interaction that many disabled people have with MSD is with Work & Income case managers, in an attempt to gain disability benefits or other forms of income support.

These comments from the Welfare Expert Advisary Group Report are representitive of the way that disabled people feel about interacting with Work & Income

Staff need to be trained and empathetic to people with disabilities. [Newtown (Wellington) community centre]

Special training for staff who look after clients on the Supported Living Payment, so they can better understand health, disability and accessibility needs and issues. [Welfare recipient]²

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The DSS Review

The question which should be asked is, If the delivery of disability supports is not be done by DSS & MSD, then who and how would deliver these supports?

There has long been a discussion within the disability community about Enabling Good Lives (EGL) and its capacity to actually deliver the supports that disabled people need to live the good life that so many dream about.

At the moment there are three demonstrations sites delivering EGL, in Christchurch, Palmerston North, and Hamilton each funded on a tiny budget to deliver on a very limited scale.

The demonstration sites are actually doing a really good job at delivering innovative person centered, services, all be it on a small scale.

What we do know from the Palmerston North site is that demand for entry into the trial far outstrips the ability for the trial site to meet that demand.

The big question that is as yet untested is, can they deliver these services at scale? And this is where Trust comes in.

The biggest blocker to achieving the vision of Enabling Good Lives on a National Scale, is a lack of Trust.

A lack of trust by successive governments, by senior officials, and by specific officials who do not believe in EGL itself, and wish to keep funding within government ministries, and are outwardly opposed to devolving funding to the community level.

We have a lot to learn from what is occurring in Australia with the delivery of the NDIS³. We can learn from their experiences, build a better, more person centered system over this side of the Tasman, or,

We can stick with our current system, which is not delivering the results for disabled people, families, whanaū or for providers.

So, until the Review of DSS is concluded, and now that has been extended until next year, we are stuck with the current model that keeps disabled people locked away from achieving true choice and control.

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A Future I dream of…

The history of Whanau Ora is relevant to this discussion, Whanaū Ora was championed by Dame Tariana Turia, as an:

“…. approach that puts whānau at the centre of change and supports them to fulfill their dreams and aspirations.⁴

There are significant parallels between Whanaū Ora and the Enabling Good Lives approach, which:

“… has the intent of shifting power and authority from government to disabled people and their families.

Significantly, in 2011, EGL was supported by Dame Tariana Turia during her time as Minister for Disability Issues, under a National led government.

We have a lot to learn from the Whanaū Ora experience, and there are are opportunities for Allyship between the Disability community and Māori over both Whanaū Ora and EGL.

However, the issue of there being a fundamental lack of Trust by the government toward both Māori and Disabled People I imagine resonates for both Māori and Disabled People.

This is the type of of issue that grates against a people and fuels resistance.

The Government didn’t / doesn’t trust Māori to share power, and the very same government doesn’t trust disabled people to deliver services to its own communities.

Maybe this is an issue that both Māori and Disabled People can unite over, and advocate for change over.

I dream of a future where disabled people have greater control over our own lives through a greater share of power and greater control over the ability to deliver services to our people.

Hopefully that future will arrive in my lifetime…

1. https://www.disabilitysupport.govt.nz/consultation/responses-to-2024-dss-survey-and-submissions

2. https://www.weag.govt.nz/assets/documents/WEAG-report/background-documents/dd486dadc4/Consultation-report-010419.pdf pg.24

3. https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/

4. https://www.teputahitanga.org/a-matou-korero/whanau-ora-history/