KEY POINTS:
A group of parents and their disabled adult children have begun a legal battle with the Ministry of Health in a landmark case in Auckland this week.
Their case centres on family members who are denied payment when they act as caregivers for their disabled children although the Ministry of Health pays non-family members when they carry out the same role.
The group say the policy is a breach of the Human Rights Act. Seven parents and two of their adult children have taken legal action against the ministry at a Human Rights Review Tribunal hearing at the Auckland District Court.
The office of Human Rights Proceedings is paying for lawyers to represent them.
North Shore resident Jean Burnett told the hearing she and others wanted to use family members to care for their children because they had tried agency care and found it unsuitable.
She lives with her 42-year-old son, Stuart Burnett, who is confined to a wheelchair and has suffered from cerebral palsy since birth.
"I maintain the policy of not paying family members to care for their disabled family member, with whom they live, is discriminatory and extremely unfair.
"Over the years it has placed a huge strain on Stuart and me and denied us the opportunity of living a self-determining family life."
Mr Burnett was being "punished" for his choice to live independently at home and she was reduced to "slave labour", Mrs Burnett said.
"The choices presented to us by [the Ministry of Health's] policies are to have a series of untrained, unqualified transient workers traipsing through our home and lives ... or me working for nothing at one of the hardest and most demanding jobs in the country."
Mrs Burnett demanded to know why the ministry had paid some family members for the work they did and people like her, who were at the severe end of the spectrum in terms of support needs, got nothing.
"Their heartlessness has felt very cruel at times."
She said her son was a successful programmer, was intelligent and had an active brain.
"I have never allowed him to become a 'professional wallstarer'. We have witnessed so many of his peers who were not only denied an education but have lost most of their body movement and agility because they are constantly sitting in their wheelchairs in one position."
Mrs Burnett said Stuart did not just need someone to "wash, feed and toilet him" but someone who could help him live his life and dreams.
"I am willing to be that person and have been for the last 40 years. Not all parents can do this and I don't judge them for it, but I can. It's [to] Stuart's advantage that I am doing this."
In what is believed to be a New Zealand first, Mr Burnett gave evidence using his zygo polyana, a communication computer for disabled people.
He said the ministry's policies were illogical, unjust and anti-family and he felt as if he was being made to choose between living at home, where he was comfortable, or an inferior residential environment.
In its statement of reply, the Ministry of Health admitted it had a longstanding practice of excluding parents from being funded to provide disability support services to an adult child and that it treated parents differently from other caregivers.
It denied that the care provided by family members was the same as that given by a disability support service.
The ministry said Mrs Burnett did not provide unpaid disability support but gave care through "natural family support".
The hearing is expected to take four weeks.
FAIR CARE?
* A group of parents have taken legal action against the Ministry of Health. They say the ministry is discriminating against them.
* Parents who act as caregivers for their disabled children want to be paid for the support they provide.
* Non-family members already get paid for carrying out the same role.
* The Ministry of Health policy excludes family members from getting payments. The ministry says care provided by family members is not the same as that given by disability support services.
