Daughter gives voice to silent struggle

Daughter gives voice to silent struggle

By KIM KNIGHT - Sunday Star Times | Sunday, 08 February 2009

Alix Whittaker's hero can't talk; can barely walk.

One of his big toes has been amputated, he needs kidney dialysis three times a week and he is blind in his left eye. When he cries, it's silent until he presses an electronic larynx to his throat: "Sorry," he says to his 19-year-old daughter.

Last Thursday, Aucklander John Whittaker, 52, was a desperate man, fighting to keep the 35-hours-a-week home help he relies on for meals, cleaning and social contact.

His daughter Alix was preparing to quit work to care for him. Now, following inquiries from the Sunday Star-Times, the pair have been told they will be visited by Work and Income New Zealand and Ministry of Health officials who will conduct financial and support needs assessments.

"All parties are working together to ensure Mr Whittaker receives the appropriate support he is eligible for," said Harvey Steffans, acting deputy director general, health and disability national services.

Stephanie Julian, lead media adviser for ACC, said, "we are extremely mindful of the situation and are wanting to make sure he gets the care he needs and is eligible for".

But the Whittakers have lost faith. "No one knows where to place me," says John. And Alix is tired of dealing with bureaucracy.

"He's just asking for a continuation of the services he's been provided with for the last six to seven years. We just want him to maintain the quality of life that he has already."

The pretty Auckland teenager, who works at the campus of design school NatColl, recently completed a charity swim for Surf Life Saving New Zealand. She is the stage manager for an upcoming outdoor Shakespeare production. Last month, she penned more than 20 letters to politicians, government departments and the media, seeking help for her father after his community services card expired and they discovered they weren't eligible for a new one. She did it she says "because he's awesome. Because he's so strong. Because he's my hero."

Alix, an only child, was 11 years old when her diabetic father slipped into a coma. She had just made eggs and toast for tea. "It was all I knew how to cook." Later, she heard a thump. Her father had fallen out of bed and the nightmare had begun.

In hospital, an intubation procedure was botched. Accident Compensation Corporation pays John $30,000 annually following the tracheostomy that saved his life but froze his voice. The payment puts him $7634 above the income threshold for the community services card that qualifies him for $18,000 a year worth of home help. In addition, ACC says he needs home help because of co-existing medical conditions not because he lost his voice.

"Winz don't want to take responsibility for me because I get ACC," says John. "ACC don't want to take responsibility because I have other health problems outside the ACC claim."

What's it like to literally have no voice? John raises the nine-volt battery-powered wand to his throat. "It's the thoughts that make you who you are. It's what you think. So you've just got to think positively, basically."

The man who was once active in community theatre, who used to play rugby, cricket, badminton and tennis, now spends his day watching sport on television. He can stand up for just a few minutes at a time. He has a heart condition, and the diabetes he was diagnosed with, aged four, has damaged his kidneys and left him with little feeling in his legs.

"My life exists from TV to hospital, from TV to hospital. It's not much of a life."

http://www.stuff.co.nz/4841439a11.html