Kaitaia couple Royd and Sushila Butt do not disagree for a moment that 55,000 health care workers deserve the significant pay rises they will receive from July 1, courtesy of an extra $2 billion in government funding.

Last week's announcement was, however, another kick in the guts for them and others who were caring for their own under Funded Family Care (FFC), who would not be entitled to anything more than they were currently receiving.

It was unfair, unjust, mean, nasty and discriminatory to deprive those caring for family members of the recognition now given to those employed under Disability Support Services (DSS), they said.

Mr and Mrs Butt, aged 71 and 53, care for their children Ashneel (25) and daughter Alisha (22) around the clock. The children, who they claim suffer their severe disabilities as a result of childhood vaccinations, have mental ages of three and two years respectively.


"It's like caring for two very small children, every hour of every day. Everything has to be done for them," Mr Butt said.

The couple have care of them in their home 24/7. Mr Butt says that his daughter in particular was at risk of dying on a daily basis. She often needed medication or distraction in the early morning hours when she suffered seizures.

He was refusing to seek treatment for insomnia, as he needed to be awake to respond to his children day or night, while the treatment his wife was receiving for depression made her sleepy, increasing the need for him to remain awake.

For providing 24-hour care they receive the minimum wage, $15.75 an hour, for 50 hours a week. (The maximum is 40 hours, but the Butts have been granted an extension because of a lack of caregivers in Kaitaia).

The needs of the children were such that neither parent had any prospect of finding employment outside their home, but in any event the financial support given specifically precluded them from doing that.

Mrs Butt said families should be recognised as the best caregivers. Her husband had no doubt that were his daughter to be placed in care she would be dead within a month.

Last week the couple asked the Ministry of Health and/or DSS to increase their support to $19-$27 an hour. "Refusal would be discrimination against family status, and we will not let the MoH treat families like dirt," Mrs Butt said.

They were unsuccessful. A spokesman for Disability Support Services noting that Funded Family Care was not included in last week's pay equity settlement. There were no plans to change current funded family care entitlements or payments.


Individualised funding could not be used to employ or contract support workers who were the spouse/partner or parents of the disabled person, or family members who lived in the same house as the disabled person (family member being defined as a grandparent, grandchild, daughter, son, sister, brother, aunt or uncle).

Mrs Butt, who has now laid a complaint against the Ministry of Health with the Ministry of Business, Innovation and Employment, accusing it of discrimination, said it was about time that the MoH stopped being vindictive and nasty against those who were looking after their disabled families.

"The families of disabled people who look after their loved ones have been forgotten again. The Minister is saying families are not doing the job properly, so they are not recognised. That's the way we see it," she said.

The couple regarded the ministry and its Minister as bullies, she said. Telephone calls and emails now went unanswered. The couple had complained to the Human Rights Commission, without success.

"We get the feeling they don't want to do anything about it because they are looking after the government's interest," Mrs Butt said.