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Exclusive: 5000 Kiwis caring for disabled family members still not getting paid despite change to 'discriminatory' law

1 NEWS can reveal up to 5000 people who care for their disabled whānau members still aren’t getting paid – despite a law change rushed through just before last year’s election.

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Despite Health Minister Andrew Little admitting families aren't getting what they're entitled to, there's no relief in sight. Source: 1 NEWS

Since 2008, families of disabled people have been fighting through the Human Rights Tribunals, and all the way to the Court of Appeal, to be paid for looking after their family members.

They won those court cases, but for years only family members of high or very high needs people were able to access the Ministry of Health payments.

Labour promised to change the “discriminatory” law but now, after 1 NEWS started asking questions, Health Minister Andrew Little has admitted “there are people missing out who should be getting paid”.

Mark Jeffries from Platform for Good says the Ministry is breaking the law.

“We’ve got 5000 families who should be able to pay their whānau or family members out of their funding, and the Ministry says, no you can’t.”

The Ministry is still only allowing those with “high or very high needs” to use their Individualised Funding payments to pay family members.

Little says policy work is being done to fix the “complicated” law and he’s hoping to get advice on that in the next few weeks.

Proposals will still then need to be taken to cabinet and it’s likely to be months before any changes are actually made.

Families who are entitled to the funding say it’s about flexibility and choice.

Rotorua Tracy Macfarlane says it allows her to not work full time and care for her son Lance.

“He’s very vulnerable so finding someone that you have in your home that you trust, and finding caregivers that can do the things that you do is really hard,” she told 1 NEWS.

“I can take him to the swimming pool so he can do lessons, because the school doesn't have a disability van, I wouldn't be able to do that if I didn't have the flexibility around my life to be able to do that.”

The Minister admits he didn’t realise “the extent of the problem” and says he understands the frustration of families who’ve been waiting for so long.