AT 76, Stockton Centre resident Marea Bourke is believed to be the oldest person in the world with a rare genetic syndrome known as Angelman syndrome.
The Angelman Syndrome Association of Australia says the condition affects about one in 15,000 to 20,000 people and is named after a British paediatrician, Dr Harry Angelman, who discovered its cause in 1965.
While those who have the condition are often sociable and smile frequenly, they almost always have substantial physical and mental impairment and, like Marea, suffer regular seizures.
As Stockton Centre parent and advocate, Wendy Cuneo, said yesterday: "Marea wouldn't be alive now if Stockton was the sort of terrible place they make it out to be."
Marea moved into the Stockton Centre as an eight-year-old and has lived there and at Tomaree Lodge ever since.
Her sister-in-law and "person responsible", Judy Bourke of Thirroul, spent five days with her this week and came away more convinced than ever that closing Stockton, Tomaree and the Kanangra Centre at Morisset was a policy mistake, based on ideology instead of practicality.
The disability centre is scheduled to close next year.
"The more I hear about the way that at least some of the group homes are managed, the more I worry for Marea and many of the other residents who can't fend for themselves," Mrs Bourke said.
"It's been my argument all along that the level of care in a group home is not going to be the same as Marea has at Stockton. Maybe some of the residents will be alright in a group home.
"But Marea is non-verbal. She always has been. How does she communicate? Like an 18-month old, a two-year old, with body language instead of words."
Mrs Cuneo said Angelman syndrome meant that Marea "doesn't sleep very much" and needed the sort of nursing-based attention to patient needs that her experience showed her was often lacking in group homes.
Mrs Bourke - who says she will take her concerns to the new disabilities minister Gareth Ward - agrees, and wants the government to take up the Stockton Welfare Association's proposal for a disability "hub" of residences and services to remain at Stockton.
After branch meetings of members, the NSW Nurses and Midwives Association has lodged a dispute in the NSW Industrial Relations Commission and is hoping for an urgent hearing next week.
Another union, the Public Service Association, may also take part.
The unions say the NSW government promised jobs for all of the affected staff when the group home plan was first rolled out more than five years ago but details unveiled in recent days show that almost 500 people are likely to lose their positions in the closure of the three Hunter disability centres.
Union organiser Nola Scilinato said the dispute was lodged after Family and Community Services refused to stop the "transition" process for talks.
FACS said it had offered to meet the union "at any time".
Newcastle Herald
Ian Kirkwood
Reporting journalist at the Newcastle Herald since 1987. Editorial writer, general reporter, industrial relations, industry and coal.
Reporting journalist at the Newcastle Herald since 1987. Editorial writer, general reporter, industrial relations, industry and coal.
