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My brother deserves better is the title of a June 21st article in the New Zealand Herald about 24 year old 24 Jonathan Eady. The article is a real call for change: Jonathan lives in a residence with high-wire mesh gates, a bare interior with pinewood walls, and a bedroom with only a mattress. He’s there 24 hours a day except for a daily beach walk with two staff members:
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.
The New Zealand Herald tells how it came to pass that Jonathan ended up here in a situation that is (as the reporter, Chris Barton, is shocked to note) “sanctioned by both the Ministry of Health and the Family Court.” Jonathan was removed from his family home in Whangarei in 1998, “shortly after a picture appeared in the Herald of Jonathan with his mother Esther and father Viv Eady.”
From the New Zealand Herald:
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.
Jonathan’s father and one of his sisters, Rachel, are both currently seeking to be his welfare guardian. His case underscores to me the difficulties that can arise in caring for an autistic family member, and how this can affect a whole family, and lead to serious disagreements. But above and beyond this, the circumstances that Jonathan is living in: The reporter notes that “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.”
want to get in touch with rachel. my old classmate in whagarei. email me on trix_dlt@yahoo.com. i am so proud of you rachel, you’ve done well to voice Jonathan’s special case. i want to hear more abt mum and the girls – pls email me.
hugs
dalcy
This is a sad story. I hope that others in a similar situation will have their stories heard, as I’m sure Johnathon is not the only person falling between the huge gap in services offered by the New Zealand government for people with special needs.
My son is 15 years old and was diagnosed with asd as well as having physical and intellectual disabilities. I’m sure when people see him they only see the last two and assume he doesn’t understand much (he communicates non-verbally) when in fact it is the asd that causes him the most difficulties, and he understands everything, or tries to. He stays a couple of nights a week at a place funded by the NZ government for people with intellectual disabilities, and the other kids he stays with are all on the autistic spectrum. The care giving industry in NZ has long been underpaid, a sad hangover from the mentality that it’s women’s work and therefore not that important. So the staff are (usually) doing their best but are often ill equiped to relate to complex behaviours and resort to a “stop that, it’s naughty” reaction without fully understanding. It’s the old institutional idea that if they are clean and fed you are doing your job. In saying that, the place my son visits is really trying to get stimulating activities happening for the teenagers and is attempting to come to grips with his communication needs, and the staff were recently awarded a pay increase. But there is still a long way to go, and there are far more residential environments not trying so hard.
Basically as far as I’m aware there is no specialist residential place to live in NZ if you need full time care and you are autistic. You get drafted into intellectually disabled places or as in the case of Johnathon, treated as a violent psych patient. It would be interesting to read the letters to the Editor pages of the following few NZ Herald papers (I tried on the site, but no luck) as I’m sure autistic advocates would have some valuable comments. It’s good to get the dialogue going, although that doesn’t help Johnathon immediately.