By Juliana Carvalho, disability advocate
Juliana Carvalho. Photo: Supplied
Opinion - After reading phase one of the Independent Review of Disability Support report and watching Minister (Louise) Upston's announcement, I spent the night dreaming about the minister.
In my dream, I was protesting alongside other disabled people. Then, the scene shifted - we were still in Aotearoa New Zealand, but the place resembled the Parliament of Rio Grande do Sul in Brazil, where I served as a public servant for eight years. That experience gave me insight into the motivations of politicians. The scene changed again (you know how dreams work), and suddenly, I was no longer upset with the minister.
In my dream, she had a daughter with multiple disabilities, and she truly understood our struggles. We became friends.
Then I woke up to reality.
The report brings no news about the underfunding of the Disability Support Services: "DSS budgets had previously been supplemented almost annually from within vote: Health and therefore predate the establishment of Whaikaha in 2022 as a departmental agency within the Ministry of Social Development (MSD)."
Yet, Upston's announcement seems to scapegoat Whaikaha for systemic issues that have long existed.
A little (actually huge) fun fact worth mentioning: Moving DSS to MSD wasn't even a review recommendation. It was a political decision by the Cabinet.
This political decision, in conjunction with the review's recommendation to delay phase two - long-term sustainability of the system - makes it impossible to have a proper conversation with appropriate engagement of the disability community, as all resources are focused on moving services to MSD. The time to have that conversation was months ago before this decision was made.
Recommendation 5 suggests "updating the assessment and allocation settings for individuals based on level of need". This is supposed to improve consistency and reduce inequities. But why not address the elephant in the room? The glaring inequity between DSS and ACC funding. We've been frustrated by this disparity for ages, but it's conveniently ignored.
Recommendation 6 proposes establishing criteria for access to flexible funding and revising the guidelines to improve clarity and consistency. But this suggestion contradicts the very purpose of flexibility. Flexibility empowers individuals to tailor support to their unique needs. And not to impose rigid criteria that limit access.
Another troubling aspect of the report is the redaction of recommendation 4, which was intended to establish a function within the ministry to monitor the performance of NASCs and EGL sites. Additionally, the estimated financial impact of the recommendations has not been properly evaluated. This lack of transparency is concerning, especially considering the potential implications for disabled people's lives.
The report lists the stakeholders they consulted:
- 8 officials from Whaikaha
- 2 ACC managers
- 2 MOH officials
- 6 MSD officials
- the Secretary of the Australian Department of Social Services
- 3 reps from EY (because nothing says "we get disability" like a consulting firm)
- 1 hosting agency
- 1 service provider
- 1 needs assessment and service coordination group
And wait for it... ZERO disabled people's organisations (DPOs). Yep, none. Ninguna. Keiner.
Shocking, right? Who would've thought that making decisions without consulting the people impacted would be a bad idea?
Personally, the most disturbing part of the report is its acknowledgement of the lack of legislation governing DSS and its emphasis on the "primacy of natural support." For the uninitiated, this term refers to the idea that the best assistance comes from family, friends, and community, rather than formal services.
While it sounds nice, let's be honest: it's also a nifty way to shift responsibility away from the state, potentially eroding equity and access to essential services.
As a disabled migrant who was labelled a "burden" for seven years, had residency denied twice, faced deportation and only was granted residency after campaigning, petitioning and requesting ministerial intervention, I know firsthand how harmful this narrative can be and how much sacred tax-payer money is put towards systems that perpetuate ableism and are designed to exclude us and that ultimately set us up to fail.
Disabled people in Aotearoa deserve to be treated as human beings, not as liabilities. It's time to pass accessibility legislation that removes barriers rather than creating new ones.
Dear decision-makers, use our ideas, problem-solving skills, and lived experiences.
It's infuriating to hear that there isn't enough funding, especially when the system that cries poor is busy creating barriers. If things were accessible and inclusive in the first place, and we had proper access to education, employment, and health, we wouldn't need so much disability services provision. Or consider the money poured into retrofitting houses and buildings that weren't made accessible from the start.
Reflecting on my years engaging with politicians, I've concluded: that there are two types of people in that world. Those who genuinely sacrifice their personal lives to serve the community and those who just really, really love power.
In my dream, Minister Upston was one of the good ones. The reality is more like a never-ending nightmare.