KEY POINTS:
In the failing light of early evening, the cul-de-sac is a bleak location near the intersection of the Upper Harbour and Albany highways.
Light rain falls as we walk towards the house entrance, past high wire-mesh gates. Inside the yard and approaching the ranch slider, the interior is dimly lit, a television casting its glow on the particle board floor.
Jonathan comes forward from the gloom. "Hello, I'd like to shake your hand," he says. "Both hands," he corrects when I offer my right. So we shake, hands crossed over. An unusual, but friendly greeting. Jonathan, who is 24, was diagnosed as having autism at the age of 7. He has been in care since he was 14. He has lived here for almost three years.
Inside is very bare, with Lockwood pine walls and sarked ceiling. We drift towards the couch in one corner where Jonathan sits with a soft drink his sister has brought. He drinks studiously, draining the bottle with a satisfied burp, then moves on to a plum, which he eats with focused pleasure.
"I'd like some music now please," he says to his younger sister, who asks what he would like. "Pan flutes, Elizabeth," he replies. His older sister asks if he would like the music here or in his room. "In my room, Rachel," he replies decisively.
Rachel checks with the two caregivers. One of them unlocks the middle of three white doors. The bathroom door is also locked, damaged at its bottom right-hand corner. A water stain marks the floor.
Jonathan's bedroom is stark - just a mattress with dishevelled bedding on the floor. One of the caregivers offers me a plastic chair, but warns me to stay seated and not let Jonathan get it.
Rachel plugs in the portable stereo. Pan flutes fill the air. Jonathan listens from the empty wardrobe space. He's restless, moving around the room, turning the light off, then on again. The room's two windows are sealed shut. Ventilation is by three large holes drilled through the glass at the top of each window. There are no curtains, no heater. Cold winter air seeps into the room.
Jonathan is not locked in his room but is confined to the house under 24-hour supervision except for a daily beach walk with two caregivers. The spareness of his room may reflect the fact that at times he becomes angry and destructive. There is nothing else for him to do except watch TV. His sisters talk in distress about how degraded Jonathan's life has become and what happens when he's constantly bored. The room is reasonably clean, but it doesn't pay to look too closely at the walls.
I've come to the house run by Timata Hou, the IHC's designated Regional Intellectual Disability Supported Accommodation Service to see Jonathan's predicament for myself.
The visit is both surprising and disturbing. Surprising that Jonathan is so communicative. It's obvious there's an unusual intelligence confined here. And the bond Jonathan has with his sisters is undeniable. What's disturbing is how to reconcile that this service is sanctioned by both the Ministry of Health and the Family Court. If this is the standard of autism care in New Zealand, then it appears we haven't advanced much from the days of locking people in the asylum.
When the Weekend Herald asks Timata Hou about Jonathan's situation, we are told by IHC's communications manager Philippa Sellens that it will not release information about any of the people using Timata Hou services. We are told, too, that Timata Hou provides services to people with intellectual disabilities under contract to the Ministry of Health and is required to meet stringent quality and service standards. That its staff are highly trained, working in teams and supervised by a team of professionals.
Behind the scenes there is a very different story.
"I have repeatedly told anyone who will listen that we are an inappropriate provider for Jonathan," said Timata Hou chief executive Collette Ellison-Hack in an email in April. The email was to Colin Burgering of Justice Action Group which advocates for people with intellectual disabilities suffering abuse or injustice.
Ellison-Hack goes on to say Timata Hou has made its position clear to the Regional Intellectual Disability Care Agency (RIDCA) which assess eligibility criteria and refers people to Timata Hou services.
"We ended up putting forward a proposal to the RIDCA because we were the service out of default and there was no other disability provider," says Ellison-Hack, proclaiming she would happily give up the Ministry of Health funds Timata Hou currently gets for Jonathan if another provider could do the job.
"We are stuck here, Colin, with no choice," she said in the email.
The Herald gets a "no comment" from Amanda Smith, manager for the Auckland region RIDCA, Access Ability, when we try to ask why Timata Hou was chosen to care for Jonathan and whether the service was acceptable. The Ministry of Health also refused to comment, citing the Privacy Act.
Jonathan's welfare guardian Pamela Farr, a family law practitioner, was reluctant to comment on the basis of protecting Jonathan's privacy, but did state: "Frankly, the Family Court is charged with deciding how to proceed with this process and I think they are probably in a better position to make value judgments on Jonathan's care or otherwise than the people who have brought this story to your attention."
What is soon to be decided in the Family Court is who will take over his welfare guardianship when Farr's role comes to an end. It's a matter that's off-limits to the media - the Family Court Matters Bill, which would allow greater media access to such cases, is still before Parliament.
But we do know the case will pit father against daughter, as both are applying to be Jonathan's welfare guardian. Justice Action Group (JAG) also wants to be involved. "We're seeking to have JAG involved as interested party at the invitation of the mother and the sister," says Auckland Disability Law solicitor Dr Huhana Hickey acting for JAG. "What we are trying to do is bring the family back into the relationship with Jonathan."
Dr Hickey is extremely critical of the state of autism care in New Zealand, saying it's 20 years behind the US and Britain and about 10 years behind Australia.
"New Zealand is only just recognising autism as a condition and they don't even have a grasp of that yet."
She's critical, too, of the courts, lawyers, service organisations and care professionals who bring a situation like Jonathan's about. She says vested interests cloud the system and while people may have good intentions, they lack knowledge and skill. "I have a concern that Jonathan's best interests aren't being met."
She says there's a long way to go before the courts recognise the concept of supported decision-making for people deemed to lack capacity or communication abilities as set out by the UN Convention on the Rights of Persons with Disabilities.
"The judges and lawyers are not specialists in the area of understanding intellectual or severe disability where someone doesn't have capacity." She says there is no training about what intellectual disability and autism means. "They are making decisions based on perceptions that are not disability-focused."
Life changed for Jonathan in 1998 when he was removed from the family home in Whangarei. It happened shortly after a picture appeared in the Herald of Jonathan with his mother Esther and father Viv Eady. Jonathan was wearing leather restraints on his wrists and ankles. The family said the restraints were to control Jonathan's destructive outbursts and despite asking repeatedly, they were given no help. But the image backfired. Some people thought the family was abusing Jonathan and for years afterwards the picture was kept on the front of his file.
But the picture did have one effect - a bed in a residential care house in Auckland was made available for Jonathan. A year later the parents separated and Esther and her three daughters moved to Auckland to be near him. Her other son followed later and now lives with his sisters and mother.
His sisters, Elizabeth who was 12 at the time, and Rachel, who was 16, say they were never afraid of Jonathan and he never hurt them.
"He had destructive tendencies and they got worse as he became an adolescent. I think if he'd had a little bit of support, a little bit of input, those restraints would have been totally unnecessary," says Elizabeth. Both sisters point out that restraint of a different kind - being held down and medicated - has routinely been used on Jonathan ever since.
"He has been so heavily drugged in care, it's far worse than those restraints. On one occasion he was catatonic because they had drugged him so much. How come that's okay?" says Elizabeth.
Rachel, who wants to take over as welfare guardian, says based on what she has seen, in her opinion, Jonathan has fewer rights than someone in prison. "He can't leave where he lives. He's held in detention against his will. He doesn't have a choice about where he lives and he doesn't have the basic things - the room he lives in is bare. He's lived like that for 10 years without having committed any crime."
His siblings and mother visit in pairs three times a week. They stay for two hours. Their father, who still lives in Whangarei, did not want to talk to the Herald, but said there were differing views about Jonathan's care.
"We've been very distressed to be constantly visiting him and supporting him in these environments and to see him deteriorate," says Rachel. "It wasn't fair to rip him out of his home and put him into care like that. He reacted and he's been reacting ever since. He misses his family. This is an autistic person who needs routine and stability and consistent relationships."
She says in the past 10 years the New Zealand system has failed Jonathan miserably from every angle. "The services are just dysfunctional - they don't address his needs. He breaks down so they call in a crisis team. The crisis team says, 'right, we'll stick him in here'. He breaks down again. They say, 'right, let's stick him over here'."
Elizabeth says when Jonathan has a bad day with "an incident", it's traumatic. "I've seen him utterly distressed and there is no one to listen or to care. He generally cries, he wails, he rips his clothes off. I've never seen any human being so distressed as him."
She says she feels powerless to make his life better. "He's been taken completely from us and we've lost our family unity, which was the one thing Jonathan really needed."
Esther says never in her wildest nightmares could she have dreamed up what was waiting for Jonathan.
"It's the worst scenario that any mother could experience because it doesn't have an end. Because of the legal situation surrounding Jonathan and because people don't understand very much about autism, you are isolated. You have to watch your son in huge distress and there is absolutely nothing you can do. All you can is watch it and suffer with him."
The family have put forward a care proposal that would involve Jonathan living in his own flat on the family property, assisted by caregivers and with a proper intervention programme to deal with his destructive behaviours and develop his abilities. The idea has been rejected by the Ministry of Health which does not permit families to be contracted to provide full-time residential services for their disabled family members. A year ago, then Minister of Health Pete Hodgson wrote to the family saying: "This is a long-standing policy to manage the potential risk of inappropriate dependency and/or poor quality service."
Rachel, a teacher, is frustrated by being so powerless. "I try to advocate for him, but the way you're treated is just awful. You're not listened to. I visit every week. I've shown I support him. All I want is something better for my brother. I have incredible admiration for Jonathan that he survives in this type of environment."
AUTISM AFFECTS 40,000 NEW ZEALANDERS
Based on recent overseas data, ASD (autism spectrum disorder) is thought to affect more than 40,000 New Zealanders. It imposes significant and often serious disability on the individuals affected and creates major stresses for those who care for or educate them.
Since its first description over 50 years ago, it has been the subject of intense research and a great deal is now known about how to ameliorate the disorder, although there is no known cure.
- NZ Autism Spectrum Disorder Guideline, April 2008.
In 1998, the year Jonathan was taken into care, the Government commissioned a review of autism services. The Curry report identified gaps in services and made a number of recommendations to improve the quality of autism spectrum disorder (ASD) care.
A key message was that "a very significant burden has been carried by the families of people with autism for a long time". Ten years later not much has changed, except that the Government now has the ASD Guideline.
"At present there is only a facade behind which are services that range from inappropriate through to appalling," says Nga hau e Korure spokeperson Taufiq Ahmad. The group has recently formed to advocate for better services and supports for people with ASD and for their family members.
Trish Davis, National Operations Manager, Health and Disability National Services Directorate says the guideline provides evidence-based information for the provision of ASD services that will improve advice, support, services and care for people with ASD and their families.
It is expected that health professionals, educators, policy advisers and employers will begin using the guideline to inform decisions about care and interventions.
Davis says the next steps are for the Ministries of Health and Education to promote the ASD Guideline to their respective providers, and to individuals with ASD and their families.
