Couple dispute 'unfair' govt policy
Building-block towers never get very high in the Tamaseu house.
They're constructed twice a week, meticulously balanced by 12-year-old Duncan before he smashes them down.
Like his peers he's getting more physical as he becomes a young man.
It's a physicality that means he will require care for the rest of his life because he is severely autistic, has ADHD and is intellectually disabled.
It's a job his parents Paul and Larissa are fighting to be paid to do.
It makes sense they say. No-one knows how Duncan ticks like they do.
"We just want the best care for him and we believe that as parents, we are,"says Mr Tamaseu.
They have two other children, Liam, 10, and Benjamin, 2. Mrs Tamaseu says caring for Duncan is more absorbing than a fulltime job.
"It's not eight hours but 16 or more a day.
"We care for him and feed him but it is a lot of work and it affects the rest of our family, " she says.
Last November the Glen Eden couple made a submission to a Health Ministry consultation document in support of parents being paid for full time care.
The document was initiated after the 2011 Atkinson case won the right for carers of adult disabled children to be paid.
The case involved a group of eight families with disabled adult children taking the Government to the Court of Appeal via the Human Rights Review Tribunal.
The court declared that the Health Ministry's policy of not paying family carers created unjustified discrimination on the grounds of family status under the New Zealand Bill of Rights Act 1990.
The Tamaseus believed their submission made them eligible to be paid once Duncan becomes an adult at 18.
But in May the Government announced under the 2013 budget that it would only fund 1600 family carers for the disabled as part of a $23 million policy package for the sector, making parents and spouses ineligible.
The policy was rushed through under urgency in a day following the budget, without select committee scrutiny or public input.
Only relative family carers will be compensated, and only at the minimum wage and no more than 40 hours a week.
It's a unfair policy, says Mrs Tamaseu.
Until recently, Duncan has been able to be looked after by his grandparents but that's not possible now that he's getting stronger.
"Duncan's relatives aren't going to be able to look after him and his grandparents are all getting too old," says Mrs Tamaseu.
For now it's a waiting game for the family, which is following the case Margaret Spencer, a mother of 44-year-old Down Syndrome man Paul.
Ms Spencer has been battling the Government for ten years to try get financial help to support her son, who she's looked after since birth.
Their fight is now being played out in Auckland's High Court, where Ms Spencer has taken a judicial review of the court decision because the Health Ministry still refuses to pay her.
The family say surviving on one income, about $46,000 a year from Mr Tamaseu's butchery job isn't feasible.
He will have to either stop or work part time to look after Duncan as he becomes older and stronger.
"When Duncan's an adult, Paul will be the only one that will be able to control him because he's already fast and I can't catch him," says Mrs Tamaseu.
Disability Rights Commissioner Paul Gibson says New Zealand is now lagging behind in fulfilling obligations under the UN Convention on Rights of Persons with Disabilities.
"This legislation clearly prioritises the reduction of ongoing litigation risks over providing a better support system to make sure disabled people and their families have good lives," he says.
- © Fairfax NZ News
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