Teenager Harry Dunn is unable to walk and gets around by shuffling on his bottom or using a walking frame. The 16-year-old communicates by grunting and gets his parents’ attention by pulling on their clothes or nudging them with his head.
Harry was born with Angelman syndrome – a complex genetic disorder that primarily affects the nervous system – and has epilepsy.
Like other children with Angelman, who are lovingly referred to as ‘happy puppets’, Harry is a happy teenager who has a big smile and cheeky laugh.
His younger brother Campbell, 8, communicates by flicking his fingers and making noises. He loves playing on an iPhone or iPad and is fascinated by maps.
Campbell has autism and is fast on his feet. He has run away from his parents and carers on two separate occasions, forcing them to call police in fear for his safety.
The brothers who have high care needs both go to school but their only form of real independence away from family life was their once-a-month weekend stay together, funded by the NDIS, at a respite care facility in Perth’s western suburbs.
But they have lost that sense of normalcy now Red Cross has decided to close Lady Lawley Cottage in Cottesloe by December, three years ahead of schedule, due to the coronavirus pandemic.
Australian Red Cross cited “recent challenges, most significantly the impact of COVID-19,” for this year’s closure saying the service was “no longer viable”.
LLC was established in 1903. It was initially run by an independent committee until management was handed over with no monetary exchange to the Red Cross about 75 years ago.
The boys’ parents Brad and Fiona Dunn said they were “dumbfounded” by the closure of their sons’ second home where staff were like family.
“It’s such a nice feeling to know that our children who haven’t had the same opportunities as our other kids have this network of people they know through a magnificent facility like LLC, there’s nowhere else in Australia like it,” Mr Dunn said.
“The boys have their own community and life there and this has been taken away from them, all they have now is school.”
Lorraine Hayes, who worked at the cottage for 18 years, said she was “devastated” by its closure which was another blow to WA families of children with disabilities in recent years.
In 2017 more than 80 families were left to find other service providers when the Red Cross closed the LLC community outreach and engagement program.
“At the time, May 2017, the then executive director publicly stated they would not only continue the residential and high-needs support units but would be expanding upon them,” Ms Hayes said.
“It would seem the Red Cross is systematically breaking the service down, setting it up to fail so they can withdraw without blame.”
Ms Hayes said families she had spoken to were angry about the loss, with many telling her the LLC had saved them from marriage break-ups and mental health breakdowns.
“The cottage has been supporting children in some shape or form since 1903 and has always adapted to the needs of the community,” she said.
“I can see no reason why with the correct management and guidance it cannot continue to support the most vulnerable in our community; children with disabilities.
“Red Cross can go, that's not the issue but they must not be allowed to dispose of the premises other than by on-gifting it to another organisation.
“I would be horrified if the Red Cross sold this property for profit and the proceeds from the sale leave our state to fill coffers elsewhere.”
In an effort to save LLC, former volunteer and employee Kalieha Ryan has created a petition and will submit it to Disability Services Minister Stephen Dawson.
Red Cross WA director Craig Stewart said the facility’s future was unclear at this stage and the organisation’s main priority was transitioning families to other providers by December.
“Between now and then we will be considering the options available to us in relation to LLC and determining what the best course of action will be,” he said.
“It is simply not possible to say what will happen to the facility, how it will be used and so forth as we simply have not made any decisions as yet.”
Mr Stewart said he understood the closure would bring sadness and disappointment to many community members but keeping the facility open wasn’t viable.
Before COVID-19 an average of 18 children a week used the residential respite service but during the outbreak, that number dropped to two.
The service moved to an in-home model which was taken up by 10 families, but Mr Stewart said with 80 staff members it was “no longer viable” to keep operating.
Mr Stewart said LLC was transferred to the Australian Red Cross Society in December 1944 as part of a “bequest” and his legal team were exploring the terms which would determine the future use of the facility.
This article was first published on WAToday. Read the original article here.