Peta and Francis Kennedy are resilient but exhausted.
Since the Red Cross announced in May it was permanently shutting its high-needs respite care unit for children in Perth, they have not been able to find an equivalent disability service to provide the specialised care their 12-year-old son Thallaich needs and have a desperately-needed break.
"We've been really struggling just with lack of sleep and the overwhelming care," Ms Kennedy said.
Thallaich has autism, is largely non-verbal, suffers from epilepsy and needs around-the-clock medical care. Thallaich's family say he developed strong bonds with the staff at Lady Lawley Cottage. "We haven't been able to find anywhere in the community that can not only offer the respite, so somewhere for him to stay, but also staff that can professionally administer medication," Ms Kennedy said.
"Also we haven't found anywhere that has the same facilities that Lady Lawley has built up over the years, that is a safe, secure environment."The Red Cross said they had been able to find suitable new care providers or were in the process of doing so, for all families that had been using Lady Lawley Cottage, which sits a few hundred metres from the beach in the leafy Perth suburb of Cottesloe. Thallaich's mother Peta says Lady Lawley Cottage was a safe environment for him. But the Kennedys are not alone in feeling despair, with some former Lady Lawley staff and other parents saying families had been left high and dry. There is a glimmer of hope, though. Francis and Peta Kennedy do not know who will now help look after their son Thallaich. Eight groups vie for cottage
Disability Services Minister Stephen Dawson confirmed eight organisations had expressed an interest in leasing the Lady Lawley Cottage site off the Red Cross to provide disability-related services and had put forward proposals. But there is no guarantee the aid group will decide to rent out the ocean-side landmark as it decides what to do with the property it was gifted in 1945, one that has benefited from numerous community and government grants over the decades. Lady Lawley Cottage in Cottesloe has been shut by the Red Cross. The pressure is mounting, including from the WA Government, local Liberal MP David Honey, and former staff and parents, for the Red Cross to either give Lady Lawley to a disability organisation or ensure it continues to be used to support children with special needs and their families.
Not-for-profit group Hannah's House, which has received funding from mining magnate Andrew and Nicola Forrest's Minderoo Foundation and others, wants to move into the premises and expand its current services for children with life-limiting conditions to include the highly specialised respite care the Red Cross provided.
Hannah's House chair Anne McCormack said she was very concerned there was a significant gap in support services for children with complex needs that it wanted to help address.
Coronavirus pandemic hastens closure
When the Red Cross announced it was closing Lady Lawley Cottage for good, it said the COVID-19 pandemic had reduced the number of children using the service from an average of 18 to two, and not enough families had taken up their offer of out-of-home care, rendering it "no longer viable".
The organisation had already decided in December 2019 that it would close the service and focus on other work, but the pandemic brought forward the timeline.
WA Red Cross director Craig Stewart said he understood people would be disappointed and saddened, but under the National Disability Insurance Scheme (NDIS) there were "many service providers able to provide specialised care for the young people using Lady Lawley Cottage". But some parents and former staff still strongly disagree and say the same combination of skilled medical and respite care simply does not exist elsewhere. Lady Lawley Cottage's ex-director of nursing, Susan Hart, says families have been left high and dry. (ABC News: Nicolas Perpich)"I really don't think they have a clear idea of the impact this decision has had on various people out in the community," said Susan Hart, who retired as the director of nursing at Lady Lawley Cottage in 2012 after 22 years there.
"There are a lot of families who have been left high and dry, and I don't honestly believe they understand how severe that impact has been."The cottage provided time to 'recharge' Peta Kennedy said in the eight years Thallaich went to Lady Lawley Cottage, he had developed strong bonds of care, trust and friendship with the staff. Peta Kennedy says nobody else can do what Lady Lawley Cottage did for her son. They could take him there and be reassured he would be lovingly and professionally cared for by staff who knew he needed 24-hour medical care, had no concept of safety or of hot and cold, and that they had to regulate his food and drink for him.
It gave them precious time to recharge the batteries, "touch base with our younger child and make sure that all's well in the world".
Ms Kennedy said when the Red Cross suddenly informed her Lady Lawley was closing and their bookings for the rest of the year would not be honoured, she wondered who would now look after Thallaich. Thallaich has autism, is largely non-verbal, suffers from epilepsy and needs around-the-clock care. Despite help from the Red Cross to try and find another service, Peta and her husband said they had not had any respite since May, except for some holiday care.
"They are saying there are other facilities, other organisations that can best pick up disability in WA. Well, there isn't," she said.
Break from three-hour sleeping shifts
Julie Fullagar, whose severely disabled and medically dependent 16-year-old son Jamie had been going to Lady Lawley for the past 14 years, agreed.
She said it was their only support, in a situation where Jamie's cerebral palsy and other conditions meant he could not walk or talk, was tube fed and confined to a wheelchair. He cannot regulate his body temperature and needs full assistance for all of his daily and personal care requirements. Eight organisations have expressed an interest in leasing the Lady Lawley Cottage site.
Ms Fullagar and her husband sleep in three-hour shifts to maintain all of Jamie's medical needs.
Like the Kennedys, Lady Lawley Cottage brought them peace of mind.
She said the Red Cross had shut the centre down with no warning and they had not found a service provider that could provide the high level of care Jamie needed.
"We have been left with no support, with no help in sight. We are exhausted and are being pushed to our limits with the 24-hour care Jamie needs," Ms Fullagar said."This all has devastated us as a family, I have cried many nights not knowing what to do, or how to help us and Jamie, to get a break for us all now."
No final decision on cottage: Red Cross
In a statement, the Red Cross said its primary focus was to help transition families to other providers so their needs could best be met.
"The care provided isn't identical to the care received at Lady Lawley Cottage, but we believe we have matched former clients with specialist disability service providers that offer a high standard of in-home respite that is not institutional," a spokesperson said.
The Red Cross stressed it had not made any decision on the future of Lady Lawley Cottage. In 2017 it announced Lady Lawley would stop providing its community engagement service, including home visits by carers and community-based respite care, and 80 staff lost their jobs.
But it planned to continue providing high-needs residential respite care and would focus on growing that service.
Mr Dawson said he was disappointed that had now stopped. Stephen Dawson says he expects the Red Cross to make a decision that will "continue to benefit" the people of WA.
"Australian Red Cross was gifted this building to benefit the people of Western Australia," he said."Red Cross has a good reputation for improving the lives of the state's most vulnerable and I would expect any decision made by ARC on this matter would continue to benefit the people of Western Australia."
The Minister said the Red Cross was considering expressions of interest from the organisations proposing to take over Lady Lawley and was expected to make a decision towards the end of the year.
Mr Stewart has met with board members of Hanna's House, who have also walked through the site.
Hannah's House 'very interested'
Ms McCormack said Hannah's House had outgrown its current premises in Como and was "very interested" in moving to Lady Lawley Cottage.
"It's an opportunity to provide a wider range of services and very similar services to what Lady Lawley did," she said.
"Things like play therapy, things like a networking group, for particularly our mums, to help support one another through these times. Hannah's House chair Anne McCormack says the group wants to move into the cottage.
"It could be a point of networking and a point of coordination for the families."
A petition was tabled in State Parliament this week calling on the Red Cross not to sell, rename or demolish the Cottesloe site, and instead give it to a disability group — just as it was gifted it 75 years ago.
"There's no reason why it should be sold," Ms Hart said."It's got fabulous resources there and those resources would be wasted if they were just bulldozed."
Mr Honey urged the WA and Federal Governments to work with the Red Cross and ensure Lady Lawley continued to provide disability services.
"It can't be beyond the means of Government and it can't be beyond the wits of Government to work out how they can provide funding that gives certainty," he said.