It's a fulltime job for someone like Ra Timms to look after her daughter, Jordyn Rose, who has Batten disease.
A landmark Court of Appeal ruling may go some way to acknowledging this.
The test case that was decided yesterday dismissed the Ministry of Health's appeal against a finding that its current policy was discriminatory. The ministry does not pay family members for care provided to their disabled relatives.
Mrs Timms had not been involved in the court hearing, but occasionally kept up to date with developments.
"For me, it comes down to acknowledgment of all the hours, and all the time I spend looking after Jordyn," she said.
"You do a lot of the work because they're your children, and you love them, but that doesn't make up for the financial and emotional pressures."
Jordyn and her 21-year-old brother Brad both have Batten disease, a fatal disorder of the nervous system that starts in childhood. Jordyn is now blind, with almost no speech.
Mrs Timms has three caregivers who work a few hours a day. However, there were a huge number of daily routines that Mrs Timms must do of her own accord. Her husband, Mark, a builder, is the family's sole breadwinner.
"The caregivers are brilliant; I cannot speak highly enough of them – and my husband is absolutely hands-on," she said.
"But there are tasks they don't do, because their job description only covers so much.
"It's all very well for others to say I should be looking after my daughter, when theirs have grown up and live independently."
Mrs Timms said Brad was in residential care in Christchurch, and it could cost up to $1200 a week to have Jordyn in a similar facility.
"It's about time families like ours got acknowledgment."
- The Ministry of Health doesn't pay family members for care of their disabled relatives.
- A small group of parents and two of their adult disabled children lodged the claim in 1999 with the Human Rights Review Tribunal, and won, then won in the High Court.
- The ministry appealed; the Court of Appeal heard the appeal earlier this year.
- The Court of Appeal has ruled in favour of the group of families yesterday; the ministry's last recourse is to the Supreme Court.
- The Health Ministry says paying family members to care for disabled children could cost it anything from $17million to $593 million a year.
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