We need to trust parents
Having flexibility in Carer Support makes a huge difference for families, so why don't we do it?
The recently updated purchasing rules from Whaikaha - Ministry of Disabled People walked back some of the March 18 restrictions for disabled people. But not for parents and caregivers. Carer Support funding allocations (which are only determined after a thorough, robust and rigorous needs assessment) remain rigidly managed and inflexible.
Since March 18, you can only use Carer Support to:
Send your disabled child to stay in a respite care facility. On their own. With strangers.
Become an employer (with all the employment responsibilities and tax related requirements) and employ a paid carer.
Organize and pay for externally-provided programs for your disabled child to attend (and then take time to provide transport and associated admin).
If you vacate your home, you cannot use your funding allocation for travel or accommodation-related expenses. Instead, it is your disabled child who must leave the familiarity of their home environment (local travel is funded, but not if you need to travel to another region), despite the reverse being both more feasible AND more in the best interests of the disabled child.
So much of what gave parents and caregivers a brief moment to rest and relax is now excluded, along with anything that provided for the well-being of the family unit as a whole. Siblings and whaanau are entirely excluded in these new rules which only include the disabled child and caregiver dyad.
This has been devastating for families, who had been tailoring their (rather minimal) funding allocations to meet the specific needs of their family.
Carers NZ collected feedback from hundreds of affected families. Examples include:
“Being able to use funding to purchase items such as a wobble chair, PlayStation and TV have been a lifesaver in providing stimulation and respite for our 18-year-old with ASD and ADHD. It has improved our lives drastically and given us a genuine improvement in the quality of our lives.”
“Many of us despite having funding can’t entice support workers due to where we live or the few hours we can only offer due to the low number of carer support days.”
“Carer support pretty much is useless now because we don't have anyone that we can trust to look after our kids.”
“People who are qualified to work with our very high needs son are hard to come by. Our lives have just been made that much harder and we have been unfairly penalized.”
“Due to the challenges finding appropriate carer support for our severely disabled son we used our [respite funding] to help us with accommodation and fuel to have a couple of nights away. We have no family support and have a limited income.”
This return to 1990’s-style rigidity is in direct opposition to an Enabling Good Lives (EGL) approach. First implemented by a National-led government in 2012, an EGL approach asks disabled people and families to imagine what a good life, one with ordinary life outcomes, looks like. Supports are then tailored to enable disabled people and their families to meet these goals.
A recipe for abuse
Sending a child, on their own, to stay with people they don't know, in a strange environment, with limited choice or control, is a recipe for trauma and abuse. Even more so if your child requires support with personal cares, has communication difficulties, or is non-speaking.
Our fabulous kid would most certainly find it traumatizing, having to leave all they are familiar with to stay with people they don’t know in a house/facility they don’t know. I would find it extremely distressing. Instead of “respite” it would erode our child’s trust in us and undermine the wellbeing of our family.
The recent Abuse in Care Royal Commission of Inquiry has revealed just how poorly the state does in terms of providing care for disabled people. Their interim report makes for difficult and distressing reading.
Survivors with a disability often felt ostracized from the rest of society when they were placed in care. Many reported feeling abandoned, invisible and excluded from their family and wider community.
And yet, the changes to support funding - as directed by the Minister for Disability Issues - means parents must now employ a stranger to provide care, or send their child, alone, with strangers to a respite facility, or enroll (and then transport!) their child to a programme. These are now the only options for a break for many parents.
This approach is short-sighted, expensive, and leads to worse outcomes for disabled children and their families.
As noted by one disabled adult, who requested I share the below anonymously, tax is a way of paying things forward to benefit the upcoming generation:
There’s the one thing I would say if I was able to speak my truth. When I was three - the state paid stuff forward for me - it paid for my supports, my therapies and for my family and me to have some time to explore stuff separate from that. I’ve paid that investment forward back - it’s called tax. What these cuts will do are doubly cruel because in not paying it forward I can’t potentially pay you back. (Name withheld by request).
We trust parents to raise their kids and do right by them in all sorts of ways. We trust parents with the Child Disability Allowance. We trust parents with their child’s health and wellbeing. We trust parents with their child’s educational journey.
We need to trust parents to use their Carer Support in ways that work for them. Whaanau do a far better job of providing care than the state ever has.
The wellbeing of children, siblings, parents, caregivers - of whaanau - is bound up together. Trust families to look after themselves in ways that work for them.
Not only that - but it is also far more cost-effective to trust parents than it is for Ministry staff to chase up increments of $40 spend from Carer Support forms and the endless emails to find missing receipts and return unsigned notes and having to code each and every amount. That is time that could be better spent elsewhere.
Well said. Another point is that respite facilities for children and disability-inclusive care programmes don't even exist in a lot of places. I live in a small city and there's nothing like that to choose from, even if my child would go happily. Hiring someone isn't an option either as it's nowhere near enough money to pay a minimum wage
What an appalling approach from this Government. Is this what people voted for when they “just wanted a change”? Is this what “getting NZ back on track” looks like??