Rob Burns remembers the day a professor told him to take his intellectually disabled son to an institution and leave him there.
The now-closed institution in Newcastle was so bleak that during the first three months Mr Burns would not let his wife and daughters visit.
More than 50 years later his son Wayne is still in full-time residential care, but life is very different.
Wayne, 57, has long-time friends, the nurses can read his moods and he has a busy social life through day programs.
Mr Burns and his wife Shirley are among the families who fear the New South Wales Government is using the National Disability Insurance Scheme (NDIS) to evict people like Wayne from the only home they have known.
The State Government has been accused of using the new funding scheme as a smokescreen to avoid its disability funding obligations, and to close the state’s few remaining large residential centres – or “institutions”.
ABC News has learned a clause in the heads of government agreement between NSW and the Commonwealth on the NDIS specifically prohibits NSW from offering any residual disability services from 2018, once NDIS is rolled out in full.
NSW was the first state to sign up to the scheme and agreements with other states explicitly say the opposite.
Disability advocates fear the State Government will use the clause as a way to avoid funding any services in the future.
“Children are left behind with no-body to advocate for them. No state intervention, no role.”Paul James
In particular they fear there will be no provider of last resort if the non-government sector is unable to cope with complex cases.
Michael Coutts-Trotter, the director-general of the NSW Ageing, Disability and Home Care Department wrote to staff last month, saying: “By 2018 only non-government agencies, and possibly the Commonwealth, will provide services – and not our department.”
NSW Public Service Association Hunter organiser Paul James says there are already many examples of the private sector being unable to cope with high-needs clients.
“There’s going to be a lot of competition in the market, which is going to drive down quality of care,” he said.
“We believe the Government should be there as a free choice for families.”
Mr James says people are already starting to fall through the cracks.
“Children are left behind with nobody to advocate for them. No state intervention, no role. It’s a huge gamble,” he said.
Potential closure of centre causes anxiety for parents
The Burns family says they welcome the NDIS but believe it should be directed to those living in the community without help, not those in residential care.
They have been told they will be eligible for NDIS assistance once the State Government closes the Stockton Centre by 2018.
The couple believe Wayne has thrived inside the centre, which is in the Hunter region of NSW where the NDIS is being trialled.
“We just want [Wayne] to be happy and that’s where he’s happy,” Mr Burns said.
“He wouldn’t be there if we wasn’t really happy.”
The potential closure of residential institution has created anxiety for the ageing couple who have had to fight the centre’s closure numerous times.
In recent decades there has been a trend in disability circles away from institutional care.
The couple are sceptical about the non-government sector’s capacity to cope with their son’s many needs.
They say one day-program charged them $2,500 for a two-night holiday an hour away.
Another group took Wayne to a beach and said he enjoyed himself – despite Wayne’s fear of water.
“They would never ever have enough staff,” Ms Burns said.
“I don’t think they would know how to handle a lot of them.”
Minister says state ‘won’t turn our backs’
NSW Disability Services Minister John Ajaka says the closure of residential centres at Stockton, Morisset and Tomaree in the Hunter were on the cards for some time and are unrelated to the NDIS.
Yet the centres will be “redeveloped” by 2018, when the NDIS is rolled out in full.
Mr Ajaka says the projects are about the rights of people with a disability to live in the community, to lead meaningful lives and to receive the services and supports they required.
“Large residential centres are broadly considered an antiquated model of support for people with a disability, who generally lead more fulfilling lives in smaller, family-like situations (such as group homes),” he said.
“Stockton residents and their families will be able to choose either to stay at Stockton until the centre is re-developed in 2018, or to move to other accommodation that better meets their individual needs.”
“We will hold the Commonwealth to account to ensure our people receive all of their entitlements … We don’t simply turn our back and say it’s not our responsibility anymore.”NSW Disability Services minister John Ajaka
Mr Ajaka says the State Government will ensure it only relinquishes care for people who need especially skilled and complex support when there are appropriate arrangements in place for them.
“The larger states, like NSW, have all agreed that they will no longer provide disability services and they will transition out of disability services,” he said.
“There’s only a number of smaller states who are trying to retain a smaller portion of disability services.
“We will hold the Commonwealth to account to ensure our people receive all of their entitlements and that they are well looked after.
“We don’t simply turn our back and say it’s not our responsibility anymore.”
Bruce Bonyhady, the chairman of the National Disability Insurance Agency, says he is aware of the closure of residential centres in NSW.
“With change comes both opportunity and challenge and fear,” he said.
“I know the NSW Government is committed to working with those families, as are we.”
Families say Government ‘can’t be trusted’
But Wendy Cuneo, a Stockton Centre mother who is vice-president of its Welfare Association, is sceptical about the Government’s claims.
“I think that the State Government saw this as a way of unloading a whole lot of problems,” she said.
“We can’t trust them, because they can go home at the end of the day and never think about our people again.”Wendy Cuneo
“We can’t trust them, because they can go home at the end of the day and never think about our people again.”
Margaret Lyon, whose son John is also in Stockton, shares her concern.
“My worry is not all non-government organisations will take over the ones they consider in the too-hard basket,” she said.
“How would you like to be moved out of your home for over 40 years, to somewhere you don’t know, probably with staff you don’t know, probably leave friends behind.”