Autistic teenager has nowhere to go
Joseph Mains, 18, went into the psychiatric unit in March last year. He’s still there and his parents don’t know what to do. Carmen Parahi reports.
Rachel Mains is a battler. She’s feisty but loving, drops f-bombs into every second sentence and barely contains a hacking, chain-smoker’s cough. And she won’t ever apologise for being a difficult parent.
‘‘I’ve had to fight for Joseph his whole life. And that’s what I tell other special needs parents – don’t accept no. When you’re fighting for your child, no isn’t an option.’’
But beneath the tough exterior, Rachel admits she’s a mess and is barely holding it together. A counsellor recently told Rachel she has PTSD and is now being medicated for depression.
Rachel says she isn’t supposed to be in the mental health system, her autistic teenage son is. But when she tried to get help for him the stress hit her hard.
‘‘They took him from me and all I could hear was him screaming, mum, mum I love you don’t leave me. And I had to just walk away. My husband took me straight to the doctor, she put me on antidepressants I reacted to. So I ended up in hospital for two weeks.’’
The Tiaho Mai Mental Health Unit at Middlemore Hospital is described by Counties Manukau Health as a safe environment where people can stay for short periods of time.
Joseph Mains, 18, went into the psychiatric unit in March last year and he’s still there.
The General Manager of Mental Health Services Tess Ahern says, ‘‘No-one believes that the inpatient unit is an appropriate place for Mr Mains to reside.’’
They’re working with Taikura Trust, a Disability Support Services organisation to find a place for Joseph to live permanently but they’ve had little success so far.
Joseph’s dad Brendon says if he ran his property maintenance and cleaning business the way the New Zealand mental health system works, he’d have gone bust.
‘‘Is the system that broken there’s really nowhere for him?’’
He’s at his wits end trying to support his son and now his wife, who are both struggling inside the mental health system. It’s under review by an independent panel who will report back to the Government in October.
‘‘It’s failing people. Do not expect a quick fix. Joseph’s been there a year. Rachel’s coming up to a year needing help as well ... It’s hard for people who need the help. I’m not surprised New Zealand has a high suicide rate.’’
No one believes Joseph’s case is an easy fix.
All those involved in Joseph’s care say he has high, complex needs. He’s been diagnosed with autism, epilepsy, ADHD and dyspraxia. Although Joseph is communicative, Rachel and Brendon are also his legal welfare guardians because the 18-year old has an intellectual disability and functions at half his age.
‘‘I’m his voice and I will fight his fight,’’ says Rachel.
Joseph is a big lad and can be intimidating if he doesn’t get his way. ‘‘He was a real difficult baby, I couldn’t put him down, I couldn’t be out of his sight, he didn’t sleep,’’ says his mum. ‘‘Joseph’s always been aggressive, throwing temper tantrums, very stuck in his his way. When he was a little boy he was obsessed. He’s collected car keys since the age of two, so he’s well known by Mr Minit.’’
Joseph is the youngest of four children.
He started school at 5 years old but was only there part time. He was forced to leave after he hit his teacher aide. He was then placed into a special school where he was educated from 2004. Rachel says Joseph was always difficult at school but in 2016 he got worse. He pushed a teacher, the police were called and Joseph was taken to a psychiatric unit. He went back to school but didn’t like his new class. He left and refused to go a different school at the start of 2017.
‘‘We had nothing. Dad and I had to juggle work and look after him because we had nowhere to take him. He just got progressively worse,’’ says Rachel. ‘‘Things got really, really bad, he got more and more violent. We were having to call the police more and more.’’
The family had no alternative but to allow Joseph to be admitted into Middlemore’s Tiaho Mai mental health unit on the March 24, 2017. The experience still haunts Rachel.
‘‘I didn’t want to be like everybody else and put him in the too hard basket. So we always had a plan that we’d either convert our house so he’d have his own place or we’d put a cabin on the front lawn. I know I can’t do it now. I’m hoping after a couple of years in residential care he’s taught how to deal with his anger and not be so aggressive.’’
But Rachel’s hopes for her son to get the help he needs are fading with every day Joseph remains inside Tiaho Mai.
One week after Joseph was admitted into the unit, he was in a fracas with two staff who tried to shower him. He suffered serious carpet burns to his face and his finger was fractured.
General Manager Tess Ahern says: ‘‘Mr Mains has struggled at times. He has made a number of assaults on staff and peers when his coping has been overwhelmed. In one such assault, he inadvertently broke his finger. Tiaho Mai inpatient staff and MH Services Management treated this incident seriously.’’
The Tiaho Mai unit investigated the matter only after Rachel complained to the Health and Disability Commissioner (HDC). As a result the Tiaho Mai unit made their own recommendations to the HDC including better training for staff, tighter reporting procedures and ensuring workers aren’t left alone with agitated patients because it placed them all in a vulnerable situation.
‘‘We sincerely apologise to Mr Mains and his family that the care provided to Mr Mains fell below the expected standard.’’
The Unit Manager also said sorry that Rachel Mains felt she didn’t want to make a police complaint about the incident because she was afraid of staff reprisal.
The worker involved in Joseph’s finger being broken wrote a personal apology to Joseph expressing his sincere regret he was injured. The staff member hasn’t worked in the unit again.
The apologies did little to ease the family’s fears Joseph shouldn’t be in the psychiatric unit.
On April 13, 2017, just three weeks after he was first admitted into Tiaho Mai, Joseph was discharged and sent home.
‘‘He hadn’t changed, we didn’t have any support. A nurse would ring him and see how he felt every other day. He just started to get really violent and very controlling of me,’’ says Rachel.
Less than three weeks later, he was taken back to the unit.
It took a further six more months before Taikura Trust placed Joseph into a residential home in mid October.
‘‘He was with three non-verbal autistic men and Joseph is intellectually disabled but he is very social and very chatty. And so it didn’t work,’’ says Rachel.
Joseph was readmitted to the unit within three weeks.
The family believes the hospital just wanted to get rid of Joseph so they allowed him to be placed in an unsuitable setting and it backfired.
But Ahern denies this. ‘‘Mr Mains expressed willingness to trial this new residence, though he still expressed the desire to live independently and without supervision,’’ she says.
‘‘He became increasingly aggressive, to the point of representing potentially lifethreatening harm to the individuals living with him and the staff. Though there was no psychiatric indication for readmission, there was also no other safe setting for Mr Mains to go, thus he was re-admitted to Tiaho Mai on 26 October 2017.’’
Joseph has been kept in the unit ever since.
Although the hospital says Joseph posed a threat, they allow him to go out on his own.
‘‘While Mr Mains is in Tiaho Mai he takes daily unescorted leave from the unit, has gone into the community on leave, and spends considerable time chatting with reception staff and visitors to the hospital,’’ says Ahern.
This is despite repeated requests from the parents to stop letting him out of the unit by himself. The last time, just a few weeks ago ended with the family having to call the police for help when Joseph turned up agitated at his elderly grandparents’ home.
The family is concerned. They say if Joseph isn’t placed into a suitable home soon, he’ll become the next Ashley Peacock – the adult male who was locked up in the Tawhirimatea Regional Rehabilitation and Forensic unit in Porirua from 2006, until a public outcry in support of his parents secured Peacock’s release in 2017.
Similarly to Peacock, Joseph has autism and is heavily medicated. Although Joseph isn’t confined to his room, his parents believe just like Ashley Peacock, Joseph hasn’t been given any psychological intervention or kept active by staff so his mental health is deteriorating.
Joseph’s parents and grandparents take turns to visit him every day.
‘‘It’s a dirty run-down place, he’s intimidated by other people, he spends most of his time in his room,’’ says Rachel.
Taikura Trust CE Sonia Hawea wanted to reassure the family Joseph’s care is a priority.
‘‘Ultimately money is a consideration but the first thing, because of the nature of his needs, do we have a setting? How that looks and how we make sure that’s safe, that certainly has cost implications,’’ says Hawea.
The Trust and the Mental Health Services have a plan for Joseph to reside at the Totara Farm facility in South Auckland. Joseph will live in his own small cottage with paid support services.
Hawea won’t say what the total package would cost but it’s beyond their funding threshold of $85,000 a year per client. Any costs above the limit have to be approved by the Ministry of Health.
The family says they were told by their case worker it could cost up to $1m a year and his gut feeling was they wouldn’t get the funding because it was too expensive.
Hawea says any decision won’t be made for another six weeks.
Rachel didn’t know Joseph’s care plan had been sent to the Ministry of Health for a decision until she was told by Stuff.
‘‘Six weeks?! F...! So that means he’ll bloody turn 19 in the hospital. Six weeks? I’ll be gutted if he has another birthday in that shit hole.’’
Rachel is afraid to hope but terrified what will happen to Joseph if the funding is declined.
‘‘I just want people to know that the mental health system is failing,’’ says Mains. ‘‘Don’t let them push you around, don’t stand for nonsense. If you’re not happy with how your loved one is being treated fight for them, speak for them, speak up.’’