Parents fume over delay in home-care pay decision

Cliff Robinson, pictured in 2001 with his children Marita (centre) and Johnny. Photo / Kenny Rodger

Eight families who say they need financial help to look after their disabled children have been left waiting almost a year for a decision by the Human Rights Review Tribunal.

Cliff Robinson, 73, of Thames, is from one the group of families who are fighting the Ministry of Health for funding to care for their severely disabled children at home.

The families took the ministry to the Human Rights Review Tribunal more than a year ago over its policy of refusing to pay family members to care for their children.

The policy allows the money to be paid if strangers perform the work. The families involved say this is discrimination and asked the tribunal to allow the paid hours to go to them instead of strangers.

Mr Robinson's children, Marita and Johnny, who have microcephalic intellectual disability (Johnny also has schizophrenia), were 41 and 39 when the case was heard in September last year. The silence has been deafening, say the families, who fear that once again they have been put in the too-hard basket. For some, time is of the essence, said Mr Robinson.

One of the original plaintiffs died before the case got to the tribunal, and another three plaintiffs are in their seventies.

Mr Robinson, like the other families, cannot understand why the decision is taking so long. "I mean, a murder case, a most complicated case like some of the trials you see, like the Bain thing, and the jury's out for how long, three days or something? I mean, surely this is not that complicated, is it?"

Mr Robinson has cared for his children on his own since 1970 when his wife left.

He, like the other parents, says they want to live with him at home and not in care.

Jean Burnett is 75 and has cared for her son Stuart - who has spastic atheoid cerebral palsy, expressive dysphasia and throat paralysis - all his life.

She says the tribunal told families at the end of the hearing to expect a long wait, but still indicated April this year for a result.

Now next April is looming, she says.

Peter Atkinson's wife, Susan, died before the case got to the tribunal and daughter Imogen, who has spastic quadriplegia, hypertonic cerebral palsy, dyslexia and dyspraxia, moved out when Susan became ill because Mr Atkinson wasn't able to care for them both.

Imogen is flatting in a residential care situation now, but she and her father pursued the case to help others who want to care for their own children at home, Mr Atkinson said.

"The delay in their decision could materially be impacting on those that urgently require the assistance that they're not having, that's the bottom line."

The delay has also concerned the Office of Human Rights Proceedings, which fought the case on behalf of the families.

Director Robert Hesketh said he hoped a decision would follow after the tribunal meets this month.

* The hearing

The disabled adults have been assessed as requiring a certain number of hours of care.

The state provides funding for these hours, but the Ministry of Health will not pay if the care is provided by family members.

The families, and the Office of Human Rights Proceedings, say this is discriminatory.

They say ACC pays family to do the care-giving of people disabled through accidents.

The ministry argued the existence of a long-standing social contract in which families look after their own and are not paid to do so.

It also raised concerns that if these families win the case, the floodgates would open for other families to claim payment.