By Red Nicholson
The D*List: Friday, 26 April 2024
A recent change saw Whaikaha restoring flexible funding for some - but not others. Did you have a plan lined up before 18th of March? You're all set. After that? You're out of luck.
OPINION: This week, Whaikaha - the Ministry of Disabled People released yet another update to the purchasing restrictions recently imposed on people who receive flexible support funding. While this recent announcement restores degrees of flexibility for some people, it continues to leave others out in the dark.
We know there has always been an invisible asterisk that sat alongside the phrase 'flexible funding'. Flexible, sure, but only sort of. Or flexible within particular boundaries. Alcohol and gambling, for example, have always been excluded. But the changes first announced on March 18 and the clarifications since represent the largest existential risk to the pipe-dream of flexible support funding that truly Enables Good Lives.
As Whaikaha - and the Government - soon discovered after announcing the initial set of changes, introducing strict rules to what had previously been a flexible system only led to more complexity, confusion and uncertainty. Setting one rule meant making clarifications to another. Limiting one set of purchases all of a sudden meant disabled people couldn’t travel. Or get to work. Or honour their employment agreements with their staff. So as issues arose, the clarifications rolled on, attempting to mitigate various violations of human rights and employment law.
Because our lives – well, they’re complicated. We often talk about disability not being a homogenous experience, so flexibility is critical to ensuring disabled people can live the lives we want. Having rules, limitations and exclusions arbitrarily and immediately imposed upon us by policymakers had a substantial impact on our lives, and was deeply upsetting for many in our communities and our whānau.
Photo credit: Olivia ShivasA group of disabled and nondisabled people protest, with a man speaking into a megaphone in front of the crowd. A cardboard sign reads: Good lives disabled by Penny's lies. Another sign reads: Carers care, do you?
Since the changes to flexibility were first announced, shades of grey have been introduced week by week, each weekly update providing additional clarification – but very little relief.
However, the latest update announced this Wednesday introduces a new red line that means many will be disadvantaged through no fault of their own. The update dated 24 April states: “existing support arrangements can continue [so long as] … that commitment was made before 18 March 2024”. Further reading on the Whaikaha website reveals that “existing support arrangements” means that some disabled people will be able to use their funding just as flexibly as they could before, including paying for:
- “expenses that are a necessary part of supporting the disabled person, and
- travel-related costs of support workers (accommodation, transport, meal allowances) can continue to be paid where those costs are incurred as part of supporting the disabled person when they engage in domestic travel (including between cities and regions) for work.”
This is a big deal – limiting the ability for disabled people to pay for support workers’ travel had a material and profound impact on many of our opportunities for employment, recreation and social activities. So it’s great to have this flexibility restored. But - bizarrely - this exemption is only available to those who had an existing arrangement for work, study or therapy in place prior to March 18, 2024.
Did you start a new job on the March 17 and need to pay a support worker’s travel costs? No worries. Start on March 19? You’re out of luck. Did you sign up to a programme in February that requires you to make disability related purchases to attend? Great, use your funding! Oh, you signed up on March 19? Sorry - pay those costs yourself. Two people who begin the same study, employment or therapeutic journey two days apart will have access to vastly different levels and conditions of support.
Whaikaha are very clear about this: “Your flexible funding cannot be used to support you to participate in any new course of study that you had not committed to before 18 March 2024,” reads their website. This arbitrary distinction makes absolutely no sense at all, and only serves to further confuse and divide our communities.
The question must be asked: Why carve us out like this? Why make it so difficult to access the tools we need to survive? As we know, the more complex a system is to navigate, the less likely people are to engage. This leaves those that will benefit the most as the people with the most privilege. The people used to working within systems that have historically been designed to meet their needs. And the people who know the conversations to have with people inside the system to get what they need.
The question must be asked: why carve us out like this? Why make it so difficult to access the tools we need to survive?
So yes, this is a disability rights issue. We must continue to speak up against systems, processes and policies that reduce the scope of our lives and reduce us to passive recipients of support done to us, rather than designed by us. But this is also an equity issue. Government agencies continue to impose unwieldy and hostile eligibility criteria that only serves to entrench existing layers of privilege and inequity. What we’ve seen from the Government over the past month does nothing to address these issues, and in fact, by continuing to introduce needless complexity and senseless exclusions, we further entrench the very social inequities that our Ministry was set up to challenge.
Let’s cancel the clarifications, and return true flexibility, agency and self-determination for disabled people and our whānau.
Last Updated 26/04/2024
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