Daily battle to live independently

Philip Patston says if you question the quality of service you are not seen as a dissatisfied client who needs to be satisfied, but as a troublemaker. Picture / Brett Phibbs

Comedian and consultant Philip Patston, who has cerebral palsy, says: "I achieved where I am in my life by avoiding services. If I had used services I would not be able to live the life that I live do the things that I do."

Patston, lives on his own and receives Ministry of Heath funding directly to manage his own caregivers - whom he pays considerably above $10 an hour - and house-cleaning services. It's a forerunner of a scheme called individualised funding, something the disabled community has long been calling for.

Patston insists that what he gets is called support, not care. "Disabled people don't need to be cared for. Babies and old people need care. Disabled people need support."

He says the existing structure of support services funded by the ministry does little more than keep people in a low-achieving, oppressed position. "I see it all in terms of organisational culture. The Cerebral Palsy Society has a culture that is authoritarian and paternalistic. It is not into creating self determination. I believe it is about creating empires where people with cerebral palsy and other impairments are controlled and looked after."

Patston has experienced what happens when dealing with incompetent caregivers. "If you question the quality and the effectiveness of service you are seen as a problem. You are not seen as a dissatisfied client that needs to be satisfied, you're seen as a troublemaker that needs to be put in their place."

He worries that although he knows the system and how to push and shove - "be a shit-stirrer" - to get what he wants, many other disabled people are disadvantaged. "I feel very concerned about people who find it hard to communicate, and who rely on those services for their day-to-day lives."

Ross Flood is similarly independent - organising his own caregivers, driving his modified van, and working for AUT as a communications assistant. His support funding comes through Focus, which takes about $2 of every hour of support time he's allocated for transferring the money to his bank account. He hopes that if individualised funding is introduced he will receive his funding more directly. He says a good caregiver is like gold and he pays his well above $10 an hour.

"Caregivers in general do get a poor wage and I think agencies in general take far too much of it. In general agencies don't do enough for the money they get."

Flood's main beef is with Housing NZ, which last year wanted to increase his rent from $51 to $137 a week. He lives in a tiny bed-sit shed moved on to his parent's property 18 years ago. Housing NZ wanted the increase because he is now employed.

"It took a very long time to get so independent and that's when I get really pissed off - when people like Housing NZ put another barrier in my way. I took this job to get financially independent, and they say: 'Well done, old chap, we'll make it hard for you and almost triple your rent'."

Flood says the whole system of disabled care needs overhauling. "We're out and about now - we're not in institutions any more - we are leading so-called 'normal' lives. Unfortunately the system hasn't caught up with this new way of thinking yet."