A week of the grim

The sweeping and devastating changes to the disability purchasing rules

On Monday this week, Whaikaha - Ministry of Disabled People announced via Facebook that there were changes to the Purchasing Rules and to the Equipment and Modification Services¹, effective immediately.

Families like mine read these changes and immediately understood what the new “purchasing rule” meant - no more flexibility across any of the funding allocations. All of the ways so many of us used our disability support allocations were no longer allowed.

There were always rules around funding allocations. Disability support funding could never be used for the following:

Anything illegal, alcohol, tobacco (or related products) or personal income, gambling, anything that is not a cost related to disability and would be considered something that every citizen has to pay for.

There was always flexibility too - the Enabling Good Lives demonstration sites had flexibility built into them from the start. The newest site, Waikato, began in 2017. Well before Covid and associated lockdowns.

Carer Support is one of the available supports. It provides reimbursement for some of the costs of care and support for a disabled person while the carer takes a break. It is calculated at $80/day and the needs assessor² determines how many days a carer might qualify for. Its main ethos is to support the caregiver. Carer Support takes up a very small proportion of the disability spend.

It was incredibly disappointing to hear the Minister for Disability Issues repeatedly state highly incorrect statements about all of the above. Even more devastating was to hear her repeatedly and callously demean and denigrate the needs of parents, whaanau, and caregivers:³

In the past the previous Government allowed such flexibility for carers to be able to spend on such things for themselves as pedicures, as massages, as overseas travel ... the priority must be for the disabled person to receive the funding.

That funding is for disabled people.

Carers who have been using the funding for their personal care [are just] upset about losing that.

The priority has to be for use of that funding for those with a disability.

Some of the funding has been going to the carers, that does need to be pulled back and prioritised to the disabled person.

The funding must be spent on the person with the disability.

We've got such broad criteria at the moment that the funding has also been used for massages, overseas travel, pedicures, haircuts for carers.

Our wellbeing, as non-disabled and disabled, is interconnected. We all live in families and communities. Our wellbeing as whānau is collectively bound up together.

Our whaanau love this kid and this kid loves us

So…what can you do about it all?

The most effective thing you can do right now is write to your local MP. Tell them that you are in their electorate and that you are horrified by and/or impacted by these changes. Tell them what you think and ask for a return to flexible funding (and to restore full access to EMS funds).

You may also wish to tell your local MP that, despite what the Minister for Disability Issues says, the following is actually correct:

• Flexible funding arrangements have been in place prior to Covid (for example, Waikato EGL has been operating since 2017).

• Carer Support is for the carer's wellbeing and does not come at the expense of meeting the disabled person's needs.

• There have always rules and purchasing guidelines.

• Disability Support Allocations for families are only allocated after a stringent Needs Assessment, which is done by a qualified needs assessor via the local Needs Assessment Coordinator (NASC). 

There is a petition on change.org. If you haven't already, do add your name to it: Petition · Reevaluate the Recent Changes to Whaikaha Purchasing Guidelines for Individualised Funding (Change.org)

Buy your friends and family a treat⁴. Lordt knows after this week we all need one!

1. The changes to Equipment and Modification Services are even crueler and more far-reaching - so much so that they deserve their own post.

2. To get access to disability supports, you have to see your local Needs Assessment Coordinator (NASC) and undergo a fairly rigorous and robust needs assessment with a trained assessor.

3. Quotes taken from the following places:

• Oral Questions — Questions to Ministers - New Zealand Parliament (www.parliament.nz)

• Minister takes aim at 'pedicures' for carers in disability funds row (1news.co.nz)

• Disabled community urges Minister Penny Simmonds to rethink 'thoughtless and reckless' funding changes | Newshub

• Disability Ministry 'days' away from spending all its money (newsroom.co.nz)

4. This is only partially tongue in cheek!