The longest
Like a precious gift, the Appeal Court judgment was forwarded carefully through cyberspace. Emails shuttled from lawyers, to academics, to journalists and back again. Some had subject lines like “this is interesting” or “check the postscript”. The most honest had “holy hell” and six exclamation marks.
The next day the case was all over the news. The ruling last month was hailed as a huge victory for the disability community, as well as the plaintiffs — a disabled man named Shane Chamberlain and his mum Diane Moody — who had taken on the Government over payments made to family members caring for their disabled loved ones, and won.
Quietly, away from the public celebrations, a small group of families involved in another court case also read the judgment, and allowed themselves a fleeting moment of hope.
“I can’t stop smiling,” one of the group wrote on an email chain. “I love this,” another said. In particular they noted the court’s criticism of the Ministry of Health’s “impenetrable” Funded Family Care policy, and the sternly worded suggestion to settle other claims without litigation.
The families agreed: “It’s going to be very interesting what happens now.”
And then, they waited. A couple of days went by. “We are considering its implications,” the Ministry of Health said. A week. “We are confident we can settle our case out of court,” the families’ lawyer hinted. Another week. Silence.
Slowly, the flutter of hope began to fade. The families went back to their daily chores of cooking and toileting and medicating and cleaning and surviving. And as they did, the anger that had been momentarily suppressed began to bubble up again.
“I am under no illusions whatsoever about how the Ministry of Health will respond to it. They don’t care, they never have,” says Rosemary McDonald, 57. “Quite frankly, they’re a bunch of bastards. You get the feeling that they actually actively hate disabled people.”
Rosemary and her partner, Peter Ray, 67, a tetraplegic, make up one of seven families to be heard in the next Funded Family Care case.
Known as the “King” plaintiffs, they are seeking compensation in the High Court for lost wages for the years when the Ministry of Health wouldn’t pay them for their work as carers, because they were family of the disabled person.
It’s an issue that’s already been extensively turned over, with multiple discrimination findings now tallied against the ministry, and a handful of claims paid out. But this time, with the combination of last month’s scathing ruling in the Chamberlain case, and the change in Government, the King plaintiffs hope there will be more to their story than compensation for past wrongs.
What the families really want is a law change, and a fairer policy, so no one else has to go through what they have endured.
“It’s not about the money any more,” says Peter from his wheelchair. “The system is broken, and that needs to be brought out in the open.” understand
the families’ bitter fury, you have to listen to their stories. Sometimes, that means going back to the start.
For years, the Ministry of Health had a ban on paying family for looking after their disabled whanau, even though they would pay for residential care, or for an outsider do the job instead.
And because caring was frequently a fulltime job, and many carers had to give up their paying jobs to do so, most families were left without an income.
Instead, families who cared for the disabled at home survived on social welfare, or ad hoc disability payments, making do with a few hours a week of funded support, and a patchwork of respite care when they were sick, or needing a break.
It was tough work, but they did it.
June Rameka, who cares for her 32-year-old intellectually disabled daughter Maraea, says, looking back, she doesn’t know how she coped.
Maraea has numerous complex behaviours, such as self-harm, excessive hair-pulling, and a low attention span, that mean she can never be left alone.
“We were dropped from respite care because her needs were too high. She needed two carers, and I understand it was too expensive,” June says.
“Another time we had carer support cancelled. The [contractor] said it was because of my unreliability, to pay for equipment or pick Maraea up. But I had very little money. [They] described me as having a history of demanding additional carer support, but I was simply struggling to cope as a solo caregiver.”
In rare cases, if there were two parents, one would try to keep working rather than going on the benefit, some with dire results.
Sushila and Royd Butt, plaintiffs from Kaitaia, continued to run their small horticultural business as well as caring almost fulltime for their two disabled adult children. Ashneel, 26, and Alisha, 23, have the mental ages of toddlers and can do barely anything for themselves. Alisha also has life-threatening seizures, which require round-theclock supervision.
“We were in hospital two, or three nights a week at that stage with Alisha and life was extremely difficult for us,” Sushila says. “We could sleep for 10 minutes, maybe an hour, before we had to get up to her again.”
When Sushila had a breakdown and went on medicine for depression, Royd was left to get up in the night alone — meaning he would be up all night with his daughter and all day with the business. Although Alisha sleeps longer now — she’s on medical marijuana — Royd has been left with insomnia, and memory recall issues. “It’s like my internal clock is broken,” he says.
Changes to the system first loomed in 2000, when another group of families lodged a claim with the Human Rights Commission, alleging discrimination. Those families — the “Atkinson” plaintiffs — took the case to the Human Rights Review Tribunal and won. The Government appealed the matter to first the High Court, and then the