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Fighter gets support from across illness sector as High Court case begins.

Vivette Reid - 20/03/08

Health campaigner Melanie Trevethick and her organisation Equity For Illness aim to force a change in Government funding for people with illnesses.

The next round in the ongoing battle was fought in the High Court beginning March 17.

There she argued existing Government policy, where the level of funding a person receives with an illness compared to those having had an accident, is discriminatory.

When ACC was created the health sector was divided by the cause.

"If a person has an accident they are covered by ACC but if they have an illness the result has completely different outcomes in terms of how well they can cope. The added strain this causes to families is unacceptable," says Trevethick.

This time, as awareness builds about her heroic struggle, Trevethick finds herself surrounded by supporters in key illness-related organisations.

Kate Russell CEO of the Cystic Fibrosis Association says this argument about the ridiculous disparities in services and funding between those classed as ACC clients and those classed as having congenital disabilities or disorders has been going forever. The Government simply keeps shelving it as something too hard to solve. In the meantime, she says, people with congenital disabilities are slipping between the cracks.

"I think it's wonderful someone is standing up and doing something about it."

Russell says funding disparity is absolutely at the crux of the matter.

"A perfect example is this: kids who have had accidents and are covered by ACC, when they need to change wheelchairs as they grow, get them in a timely fashion. But kids with congenital disorders can languish in wheelchairs that are far too small for them, sometimes for years. We are talking about kids who get pressure sores because their wheelchairs are too small for them. They are the ones not covered by ACC and they can't afford new chairs. This is Third World thinking."

Russell says having a person with a chronic illness or disability is a costly business.

"I think the assumption among most of the public who do not come into contact with disability regularly is that everything is funded by the Government, but that could not be further from the truth."

She says although there is formal recognition by Government that there are disparities in funding, it is choosing not to do anything about it.

And how important is this case for thousand and thousands of people in New Zealand who have their disability due to illness or a congenital disorder?

"I think this could be a game breaker because Melanie has had the tenacity and drive to challenge the Government on the legalities of what they are doing or not doing."

Chief Executive of the Muscular Dystrophy Association of New Zealand Graeme Longdell says it is common knowledge the assistance in terms of funding available for those people with a disability caused by an accident and covered by ACC is significantly greater than those with a disability caused by a health issue and covered by the Ministry of Health.

"One of our members requires a new vehicle and currently the Ministry of Health is offering $11,000 towards a new vehicle whereas ACC will pay the full $100,000 plus cost of a new vehicle fitted with the appropriate hoist equipment. This is one of a host of cases that we hear all too often."

"All of us at the Muscular Dystrophy Association are full of praise for what Melanie has done and are very supportive of her future plans relating to this critical case. She is an incredible person and the disability sector is right behind her."

Support also comes from the Cerebral Palsy Society. CEO Harvey Brunt says there are always discrepancies in funding. It should be on a need basis rather than how the condition came about.

"Some people are far better funded and have all the gadgets. Those without funding have longer waiting queues. ACC is a richer animal than the Ministry of Health. It really becomes difficult when a patient is looked after by family as they can't get hoists as easily, or access to vehicles, or funding for modification to houses. There is a certain amount the Ministry will do but it is not at the same level.

"We agree with the thrust of what Melanie is driving. Why should one child with a problem have to go down one road and another child needing help go down a different one when the needs of the child are exactly the same?"

Chief Executive of the Cancer Society Dalton Kelly has added his support to the debate saying, "it is an appalling state of affairs when someone with a chronic illness is treated second best to a drunken driver who may possibly have killed someone!

"People with cancer, in particular, are so vulnerable. They rely on the health system to provide them with good care and treatments ­and this is sadly lacking. Women with HER2 positive breast cancer can access only a limited course of the drug treatment they need ­ and then are forced to pay for the rest themselves. The Ministry of Health under-spent $500 million last financial year yet there are people with urgent needs languishing on hospital waiting lists.

"One of the greatest inequities is that people suffering the side effects of harsh cancer treatments are forced to find carers where and when they can. ­ If not, they drag themselves to the toilet. ACC clients can have it all laid on for them!"

For Melanie Trevethick, represented by Wellington barrister John Miller, the case is about re-arguing two points of law the Human Rights Review Tribunal had to consider last year.

The first point is: can I as a person with an illness compare myself with a person who has had an accident? The second is: can the word 'cause' be read into the Human Rights Act?

These are fine points of interpretation of the Act of which there is no precedent of the Act either here or anywhere in the world.

Trevethick says she is hopeful and positive that one day New Zealand legislation will reflect its own strategy documents and will provide New Zealanders with social justice.

It was the New Zealand Disability Strategy of April 2001 for which Minister Ruth Dyson received international accolades last year. Melanie says while this strategy document is held up internationally as being innovative and showing a real commitment to disability issues, those of us living with disability can only be very cynical while the primary distinction between the two providers remains.

Melanie Trevethick is definitely David taking on Goliath. The difference is she has Multiple Sclerosis and has to work harder while Goliath is bigger and meaner.

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