Ingrid Pickering and her husband John spent more than a decade trying to find an organisation willing to help them care for their son Michael, who has a severe disability and is prone to violent and destructive outbursts.
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The Kenthurst mother was turned away by every non-government disability group she approached because her son's behaviour was too extreme.
"He was rejected by every single non-government organisation which assessed him," she said. "He was simply to hard to handle."
Three years ago Michael, now 31, was accepted into a group home operated by the State Government's Aging Disability and Home Care (ADHC) service and staffed by workers specialising in behavioural issues.
With the government planning to transfer state-run disability services to the non-government sector, Mrs Pickering is concerned there will be no private provider willing to care for people with the most complex needs.
"We're terrified. This is what keeps us up at night," she said. "If an NGO comes in and finds it all too difficult, what will happen? Where will these people go? Are these people going to be relinquished to hospital emergency departments?"
It's a concern shared by many in the disability sector, including workers and families. Aging Disability and Home Care employs 14,000 people and provides 40 per cent of disability services in NSW. Home Care was recently transferred to Australian Unity for $114 million with disability services to be transferred to private providers from next year as the NDIS is progressively rolled out in NSW.
Acting general secretary of the Public Service Association Steve Turner has written to NSW Premier Mike Baird, raising the alarm about the absence of a Government safety net for thousands of people with high level needs.
"People with complex needs require a higher level of service which is much more costly," he said. "At the moment, the clients with really complex needs are mostly cared for in the public sector."
Executive director at NSW Council for Intellectual Disability Aine Healy said the transfer could offer a greater choice in providers and many NGOs had experience in caring for people with severe disabilities.
"Parents have expressed concern that due to the complexity of their children's supports needs that there may not be a service provider willing to 'take them on' or that the service does take them on but puts them at risk by not being able to meet their needs adequately," she said.
"While there is some capacity within the NGO sector, including some examples of good practice, an extremely robust strategy is needed to ensure workforce capacity and capability is adequate."
Ms Healy said there was also a question mark over ADHC-funded programs including research projects and outreach services.
"This is a major issue with no clarity from other parties that have an interest and potentially responsibility of these programs in the future, including (the Department of) Health and the NDIA," she said.
Disability Minister John Ajaka said the non-government sector was capable of caring for people with the most profound disabilities.
"The NSW government's highest priority throughout this process is to ensure the safety and wellbeing of clients," he said.
"The non-government sector has the flexibility and responsiveness to meet the needs of the most vulnerable people in our communities, including those with high or complex needs.