Residents bearing the brunt of disability care in their street



A DISPUTE has broken out between a group of Boolaroo householders and a disability organisation over the care of a severely disabled girl with autism whose night-time screaming and other behavioural issues led the residents to go public with their concerns.

The organisation, Allambi Care, has confirmed the 13-year-old had arrived at Boolaroo after complaints from neighbours at her previous address in Belmont.

After the Newcastle Herald contacted Allambi on Thursday, the girl was moved on Friday and the Boolaroo house emptied within hours.

Allambi chief executive Simon Walsh said the girl was moved again to ensure her safety because she had been “abused by a neighbour”.  The residents deny abusing her.

Resident Amber Greentree – who lives opposite the Allambi house – said it was the neighbours themselves who had been abused by Allambi staff, after they had rung the police when their previous complaints to Allambi had been ignored.

The neighbours say they understand the girl has difficulties but they question why NSW is insisting that all people with disability be cared for in residential settings, regardless of the situation.

Ms Greentree and two of her neighbours all have young children, who they say have been disturbed and unable to sleep properly since the girl was moved to their street in early January.

“The kids say why is she screaming like that mum, is someone hurting her?” Naomi Brock said. “How do explain that? What do you say to them?”

Fred McEnearney, who lives next to the house in question, said there was another Allambi house behind him that had been there for 14 years and while there had been problems from time to time, it had not been like this.

Mr McEnearney said that as well as the screaming and other noises coming from the house at night, the girl regularly threw her possessions into his yard, including nappies, clothes, food and toys.

The residents said they had not been given any warning of what was happening when the girl arrived at the start of the year. Although things were quiet when she went to school, the noise at weekends and at nights soon became difficult to cope with. She had a trampoline and swing set in the backyard but none of the neighbours ever saw her use it. Both were pulled apart on Friday and “thrown into a tip truck”.

The residents said they had done everything in the past eight weeks to cope with the situation and turned to the media as a last resort.

Another neighbour said: “I understand that people can have special needs.”

“But the way this is, she is trapped in that house like an animal in a cage in the zoo when she is not at school. There are two carers there around the clock but you don’t hear her interacting with them in any way.

“Surely people would be better cared for in a proper place with all of the facilities they need, rather than be trapped in a prison on the street?”

Responding to the Herald’s questions, Mr Walsh said the girl was “not unlike any child with similar needs living within the community”.

“The important issue is that we are talking about a child who has just turned 13 with autism, a severe intellectual disability and epilepsy,” Mr Walsh said.

“As you would understand, a vulnerable disabled child who is mostly non-verbal, demonstrates behaviour that is consistent to cognitive levels of a two-year-old. These behaviours would never be described as delinquent or anti-social.”

Mr Walsh said she attended “a specialty school five days a week and is progressing well”.

“We don’t believe there are shortcomings in the way that Allambi Care delivers support to this child or in the way that we work with neighbours to address their concerns as we have strict guidelines and protocols around how all staff manage these circumstances,” Mr Walsh said.

A spokesperson for the NSW government’s Family and Community Services said the girl was “not intentionally causing a disturbance”. Places such as Stockton did not meet modern standards “even for people with high behavioural support needs”. Services should be in the community “as far as that is practicable”.


EDITORIAL: When residential care is the only model for people with complex disability.

WHAT happens when the community care of someone with a disability clashes with the legitimate expectations of those around that person to live without undue disruption?

That’s the issue at the heart of a situation in Boolaroo, where a group of residents – including one of many decades – have reluctantly gone public with their concerns over the care of a 13-year-old girl with autism, a severe intellectual disability and epilepsy, who moved into their street at the start of the year.

The morning after the Newcastle Herald contacted Allambi Care about the situation, the girl was moved somewhere else. Given that Allambi had already confirmed she was moved to Boolaroo after complaints at her previous address in the Belmont area, it seems hardly fair to the girl or her successive neighbours.

As it happens, however, there is no real alternative to such arrangements, given the principles governing disability services in NSW. As the Herald has extensively reported, the state government’s decision to privatise its disability services as part of the NDIS – together with its pledge to shut the Stockton, Tomaree and Kanangra residential centres – means that all care is destined to take place in residential settings.

The theoretical justification involves the right of all people with disability to have a place in the community. Nobody is arguing with this as a principle, and there is no doubt that many people being looked after by the NDIS are living more meaningful lives thanks to a 2014 increase in the Medicare levy, which is raising an extra $4 billion a year for disability services. But when legitimate questions are raised, there is a tendency to shoot the messenger rather than to acknowledge the concerns.

When the Herald reported in December 2015 on disruptions from a group home in Waratah, a complaint was made to the Australian Press Council that we were “inciting prejudice against people with intellectual disabilities”.

In dismissing the complaint, the press council acknowledged “the significant public interest in an article concerning vulnerable people in care”. The same sort of concerns motivate the Herald to report on the situation at Boolaroo, and to look at the practice, and not just the theory behind the revolution in disability services now under way in NSW.