The government has tried to justify sudden disability support funding restrictions as prioritising disabled people over their carers. It’s a cruel dismissal of all the work that parents like her do, says Rebekah Graham.

On Monday, on Facebook and LinkedIn, Whaikaha, the Ministry of Disabled People, announced significant and far-reaching changes for disabled people, families and communities of support. Obliquely titled “Changes to Purchasing Rules and Equipment and Modification Services”, these changes effectively end many sorely needed supports for parents, whānau and caregivers who are engaged in the day-to-day care of their disabled family members.

Disability funding for families is available in five streams: 

• Carer Support
• Individualised Funding Respite
• Individualised Funding for Household Management & Personal Cares
• Enhanced Individualised Funding and Choices in Community Living
• Enabling Good Lives (EGL) Personal Budgets

Our family is part of the Enabling Good Lives (EGL) demonstration in Waikato. Based on EGL principles, our engagements with our tūhono/connector focus on our family goals, what we want to achieve for our disabled daughter long term, what we need to plan for, and what we need to do right now to ensure the wellbeing of the whole whānau throughout our child’s life course. 

This funding has always been flexible – even pre-Covid the tailored and flexible nature of the funding was there. 

We are hugely reliant on our wider whānau to provide additional support and care for our disabled daughter. It would be considered incredibly insulting to offer to pay whānau for this additional care work. However, with EGL we can offer a koha that covers some of the additional costs. Koha is a reciprocal practice – I don’t feel like I am taking advantage of whānau, nor are they left out of pocket.  

This ability to reciprocate, to prevent additional burden on whānau, is now gone. No more gifts or koha or recognition for unpaid care work. 

I get incredibly stressed and distressed by all the additional challenges we face. I worry for our daughter’s future. The statistics for disabled children and adults are grim; across every measure disabled people face significant disadvantage. Watching her have seizures is horrendously awful. Like many other parents and caregivers, I hold this distress in my body. No matter how emotionally challenging or physically difficult care may be, I still have to show up and provide care. 

One of the things that helps me release this bodily tension and relax is therapeutic massage. For family who are providing personal care or having to lift/move their disabled family member, a massage can help to relax and restore tight and painful muscles. 

This much valued form of respite is now gone. I can no longer use my funding to meet this need. 

Because of the nature of my child’s disability I, like many other parents in Aotearoa New Zealand, cannot leave her unattended or alone as one might with other children. I cannot hire a babysitter unless they are comfortable dealing with her medical needs, are able to call an ambulance if needed, and have a full driver’s licence to take her to the emergency room. I cannot leave her in the care of older siblings the same way one might for non-disabled children. 

As a result, at times I would need to take her with me as I engaged in work-related travel. I would use her funds to pay for any additional travel costs. This had the additional layer of widening her world, encouraging her independence, and familiarising her with travel beyond our hometown. The nature of her disability means repeated interactions are needed – far more so than for others. This supported our long-term goals for her independence and built an expectation into her world of being able to move about Aotearoa. 

That is now gone. No more travel-related costs are covered. My daughter must now be limited in her world. My ability to carry out my role is also now limited as a result. 

It has been an incredibly tough few years dealing with the additional layers of disability in a post-Covid world. Other parents know how rough it has all been. What has helped sustain me throughout has been the ability to have the odd weekend away. Nothing grand, just a comfy bed in a nice hotel room, a decent breakfast, an uninterrupted night’s sleep. A physical rest as much as a break from the additional mental and emotional load carers carry. 

That is now gone. No more accommodation or travel-related expenses for caregivers or parents. No more mini-breaks to restore and rejuvenate oneself so you can carry on. 

Whaikaha tells us it is “working to update our guidance to ensure it’s clear how disabled people, tāngata whaikaha Māori and whānau can continue to access disability supports within the updated Purchasing Rules”. In the comments section, Whaikaha promises that we can “continue to access disability supports”. 

However, the only disability supports that Whaikaha will now fund for our family are:

• Employing someone privately to come into our home. This means I must now manage all that being an employer requires. 
• Contracting a disability provider to send an agency care worker to our home. This means additional administrative work for me. It means our family must interact with a stranger – who may or may not be suitable or a good fit.
• Sending our disabled daughter (on her own) to a respite care facility. This would be traumatising for her, leaves her vulnerable to abuse, and is impractical – there are no respite care facilities where we live. 

As well as being more expensive, difficult to use and impractical, none of the above options support our family’s long-term goals. They do not support our child’s emotional wellbeing. They do not meet my wellbeing needs as the primary caregiver. They do not support the EGL principles embedded into our family plan. 

Yesterday afternoon during question time, Penny Simmonds, the minister of disability issues, was asked about the changes by opposition MPs. She blamed the previous government for a “blowout in funds” and said “when funding is under constraint, the priority must be the disabled person”, and that funding “must be spent on the person with the disability”. This dismissal of all the work that parents like me do is cruel and harmful. It ignores that disabled children live in families – and that our wellbeing as whānau is collectively bound up together. Statements such as these callously communicate that this government does not care about me – or about any parent of a disabled child. It tells us that our lives and our wellbeing are less important than providing promised tax cuts to wealthy landlords.