News

Giving independence attacts international attention.
Tue, Aug 28 2007

Cowes residents may not realize it, but in their midst is a project attracting international attention.

It revolves around Brendon Hunt, the 34-year-old son of Jenny and David Hunt.

Brendon has an intellectual disability, the major mood disorder BiPolar, and has the rare and complex “Prader Willi Syndrome”, a condition which causes a range of medical, psychiatric and behavioural disorders. The most significant of these is the inability to control the urge to eat.

People with the syndrome can find it hard to fit anywhere, even in the disability sector. They gain weight easily and the “feeling full” point in their brain never shuts off. They most often require 24 hour care, life-long food management and dietary advice to prevent premature death. Freedom and independence are limited, and living in a mixed needs group setting can be difficult.

But for Brendon, a unique project is showing the way in which people with Prader Willi Syndrome can enjoy life and a degree of independence seldom seen before.

Brendon lives in a unit that he rents in Cowes. In 2003, the Department of Human Services agreed to fund a project for him called “This is My Place”. The funding helps pay for one-on-one care for Brendon. His parents, who govern the project, take care of rosters, staff training, food supplies and overseeing the weekly running of the project. Community support agency, Victorian Person Centred Services, employs the staff and provides family support.

David and Jenny, who both struggle with ill health, help bridge funding shortfalls by caring for Brendon on public holidays and often fill shifts when carers are unable to attend. But their reward is seeing their son’s improved health and happiness – the happiest he’s been since he moved away from home six years ago.

Brendon is now well-known in the Cowes community and Jenny and David often hear complements about him. “He knows more people in Cowes than I do!” said Jenny.

It was a seminar by international disability consultant, Dr Michael Kendrick, which first inspired them to think about an individual living plan for Brendon, since his existing arrangements were not proving successful.

Brendon had difficulty coping with living arrangements away from home, where management of his behaviour and unique needs were not understood and his life was at risk due to excessive weight gain.

“With Brendon you have to be pro-active, not reactive,” said David. “His Bipolar Disorder increases the severity of many of the characteristics of the Prader Willi Syndrome. It has caused so much heartache for him.”

Only recently, Jenny and David, who helped to found the Prader Willi Association of Victoria nearly 30 years ago, were invited to share their story with the President of the International Prader Willi Association.

“She was astonished and impressed - she had never heard of a model like ours before,” said Jenny.

To David and Jenny, the full benefit of the project is summed up by a recent family barbecue. “Brendon invited us over for a barbecue, just like a normal family,” said David. “It sounds small, but it was a huge step. Brendon’s never had a chance to do it before and he loved it. How far have we come from having to make an appointment to see him!”

“This project is supporting his aim to live in his own place and in his own community – developing friends, welcoming visitors and maintaining a healthy lifestyle to give him a prolonged quality of life.”