My nephews Ben and James were born with a kind of intellectual disability called Fragile X Syndrome (FXS), a genetic condition which causes anxiety trouble speaking and severe learning disability.
The boys also inherited Fragile X strengths: a good memory for things which interest them, and a love of the ridiculous. Even before he could speak, James would approach a stranger with a wide smile, hand outstretched for a handshake.
While there is no cure for FXS, my sister Anita and brother-in-law Chris have done everything they can to give their boys a life of fun and possibility, the right of every child.
It hasn’t been easy. When the boys were younger, the government’s Kafkaesque ‘Needs Assessment and Service Coordination’ (NASC) system dangled support amid a thicket of byzantine paperwork. (Incredibly, autism was not eligible for this kind of support until 2014). The boys qualified, although, bizarrely, the same criteria ruled out much help at school.
In 2011, the disability community fought back by establishing the Enabling Good Lives framework, a campaign to stand up to government bureaucrats and bean-counters. “EGL,” says its website, “is a social movement in response to the oppression of disabled people.”
In July 2022 the community finally got its own ministry – Whaikaha. During the pandemic, families were offered more flexibility in how funding was spent. It was still hard to get support, it could be miserly, and those who qualified were a tiny subset of disabled people in Aotearoa. The new flexibility, though, let disabled people and their allies organise the respite they, or their support workers (hard to find in many areas) needed to do their job without becoming dangerously exhausted.
And then came a cataclysm. On 18 March this year, funding options for carers were cut and implemented on the same day, without warning or consultation. The new rules, casually tossed onto Facebook and the Whaikaha website, affect the lives of tens of thousands of New Zealanders, including the parents of high needs children and people caring for severely disabled partners. It was a bombshell, and a shattering backward step for a group which has spent years fighting for its rights. The Disability Rights Commissioner and groups which help families navigate the complex world of ‘self-directed funding’ were caught completely by surprise.
“Parenting a child with a disability is like walking along a tight-rope,” my sister Anita told me. “At risk from a fall is the wellbeing of your family, your child. The removal of funding flexibility sent a jolt through that tight-rope. There is bewilderment, shock, anger, and grief.”
Almost a month later there is still confusion about what will be funded. “I’m not entirely clear, and I have two disabled sons and teach disability studies.”
The ministry website is not easy to understand, she says. “People who do not use social media or computers rely on others to get the information they need. The most affected seem to be families with young children and carers who support a family member with very high needs. They are the least able to navigate complex bureaucratic systems.
“The minister has targeted respite care. When our sons’ support needs soared we took short breaks away from home for a night or two while a carer came into our home to look after them. We desperately needed this break,” Anita says. “We were able to pay for our accommodation using our disability funding. This is no longer possible.” Respite care outside of the home is still funded – but many families can’t use it, because their children are too young, or react badly to strangers.
What possessed the ministry, as Bernard Hickey put it, to “simply stop spending, three months before the end of the fiscal year?” The Minister, Penny Simmonds, blamed Aotearoa’s long suffering carers for misusing public funds on massages and holidays, and her ministry for the disaster in communication. The changes, she insisted, were “not a reduction in funding.”
A day later, RNZ interviewer Kathryn Ryan interviewed Whaikaha CEO Paula Tesoriero, who admitted every year 5000 people become eligible for disability funding as 2000 ‘leave’; her budget is not increasing; and the cost of living has had a “major impact” on spending.
If 5000 people join a scheme every year, and 2000 leave, that leaves 3000 new people every year who need support. If the budget does not go up, everyone will get less money. Even I can work this out, and I only got 66 percent in School Certificate maths.
“If the budget is not adjusted for that population growth of 3000 new people each year, and if it is not inflation adjusted, then this is about saving money, isn’t it,” sighed Ryan.
If the disability funding debacle proves anything, wrote Victoria University researcher Hilary Stace, it is that the so-called ‘disability sector’ is united, strong and vocal. A petition begun by the Christchurch mother of an autistic boy on 18 March received 10,000 signatures in two days. Mainstream media flame-grilled the government in headlines like; ‘Ministry’s funding fiasco’, ‘Cutting supports is cruel and harmful’ and “Thoughtless and reckless” funding changes’, ‘Disability funding changes “callous”’.
It was Bernard Hickey’s blog, The Kākā, which won first prize for clarity with the header; “Funds for disabled suspended to pay for tax cuts”. •
