Under the Act

He’s never appeared in court, there was no trial and he hasn’t been convicted of an offence.

Yet, because he is considered so dangerous, Jay* has spent half his life locked up in a secure facility with no release date in sight.

For the last four years he has lived in seclusion in a secure hospital-level facility. Why?

Nearly two decades ago Jay broke four of his neighbour’s windows with an axe. The windows cost $900 to replace and he was the only one injured in the incident after cutting his arm on broken glass.

He was charged with wilful damage and being in an enclosed yard without reasonable excuse. The maximum penalty for either offence is three months in prison or a $2000 fine.

But those punishments don’t apply to Jay because he is intellectually disabled and autistic.

Because of his disabilities, strict suppression laws prevent Jay’s real name, any identifying details, and some other details related to his case from being published.

And it was because of these disabilities that he was not allowed to plead guilty or go before a jury. After being detained for 22 months in a community facility, Jay was found to be unfit to stand trial.

Exempt from the criminal justice system, he was made a ‘care recipient’ under the Intellectual Disability (Compulsory Care and Rehabilitation) Act in 2006 and ordered to live in a secure care facility.

Experts have repeatedly assessed him as being too dangerous to release, and Jay has been held under the Act ever since.

The Intellectual Disability (Compulsory Care and Rehabilitation) Act came into force in 2004 as a way to divert intellectually disabled offenders from prison, following the closure of psychopedic institutions in the 1990s. It is supposed to keep them, their carers and the wider public safe.

Now two decades old, the law has never been reviewed.

Human rights watchdogs and some experts say it is no longer fit for purpose and is discriminatory.

The United Nations, the Ombudsman and the Human Rights Commission want the Act repealed and replaced, arguing it contravenes international human rights standards and anti-torture conventions.

Veteran human rights lawyer Tony Ellis has been trying to get Jay’s compulsory care order overturned for the last eight years.

He believes the way Jay and others like him are treated because they have an intellectual disability, is “unjust and unfair.”

“Nobody else in the country gets locked up for 18 years because they’ve broken some windows. 

“It’s just cruel.”

Life at Jay’s place

Piles of faded photos lay on the lace-covered coffee table.

A school boy in his primary uniform beaming at the camera.

A teenager in front of a chocolate mud cake adorned with 16 blazing candles.

A grown man wearing a baseball cap, towering over his mum Katie*. 

The picture, taken in 2016 when Jay was living in a secure community-based facility, is one of the few recent pictures Katie has of her son.

“He’s a lot larger now, probably double the size. He’s put on a lot of weight.”

Katie visits Jay every week at the Mason Clinic but she’s not allowed to take her phone or a camera.

She’s never seen the bedroom he spends most of his day in because she's not allowed to. No family members are allowed inside clinical or living areas because this would create “unnecessary risk” to visitors and compromise the privacy and safety of others in the facility, the Mason Clinic says. Instead, Jay is brought to an adjacent visiting room each week.

Jay used to like stroking her grey hairs on such visits, she laughs.

“Sometimes I would put beads on my hair because he likes it. He used to touch my hair…feel it,” she says.

Jay doesn’t get to stroke her hair very often these days because his wrists are now usually restrained during her visits.

“At first I refused to go and see my son being restrained like that. But then I thought if I don't go I'll miss him.”

On a good day she spends around 30 minutes with Jay.

“But lately, because of the restraining… We just talk a bit, but I can see he wants to go so he can get out of the restraints.

“And so I let him go. I just want him to go so he can get those things off.” Her voice quivers as she wipes away tears. She hates seeing her son in this situation.

The walls of Katie’s home are adorned with photos of Jay, his old school certificates, his paintings and drawings.

Jay was diagnosed with severe autism at three years old and assessed as having an intellectual disability at 13, but he also displays savant qualities, a trait present in about 10 percent of people with autism.

“He has an excellent memory. He remembers everything,” says Katie smiling again.

When they talk on the phone at seven o’clock each evening, it’s Jay who reminds her when someone’s birthday is coming up. Give him any date and he’ll instantly tell you what day of the week it falls on, she says.

“He also loves drawing, writing, music.”

But he rarely partakes in these activities since moving to the Mason Clinic four years ago, she claims.

“They won’t let him have a radio…and he’s only given a crayon as he’s not allowed a pen. He can’t really write or draw properly with a crayon.”

Because of his behaviour, Jay lives in a specially modified wing of the Mason Clinic by himself.

He has two rooms plus a bathroom and lounge. He is under the constant care of three male staff during the day, and two during the night, though if there are staff shortages he may be locked in his bedroom or placed in ‘high care’ - a separate seclusion area that Jay often refers to as ‘jail’, says Katie.

“Jay tells me there’s nothing in ‘jail’, only a mattress and a chair.”

If Jay shows signs of aggression, he can be restrained, given medication to “assist in calming” him, or taken to ‘high care’ to help him “self-reflect”.

Unlike most other care recipients on the unit, he is not allowed to leave the facility because it does not have a secure van to transport him. He is supposed to have daily access to an enclosed courtyard but Katie says Jay tells her it is more like once a week. 

In a recent phone call, Jay told her it had been more than three years since he had touched grass, she says.

The IQ rule 

Between 100 to 120 people are estimated to be subject to compulsory care orders under the IDCCR Act at any given time. 

Around a quarter live in secure hospital-level facilities, like Jay. The rest live in secure-but-less restrictive community-based ‘supervised care’, according figures from Whaikaha, the Ministry of Disabled People.

In order to be held under the Act, a person has to have an IQ score of 70 or below.

The Act also allows for care recipients to be secluded, restrained and forcibly medicated under certain conditions.

A compulsory care order is usually set for an initial period of up to three years.

While the overall number of orders granted or reviewed over the last five years has fallen, 95 percent of applications have been approved by the Family Court, according to Ministry of Justice figures.

The Family Court also has the power to extend a care order. 

Of the 107 care order extensions filed with the court over the last six years, only three have been declined or withdrawn. 

There is no limit on how many times an order can be extended.

Whether a care recipient is detained or released from the Act is based on risk assessments provided by specialist health assessors every six months.

About a quarter of people currently subject to a care order have been so for more than 10 years.

Approximately 10 percent have been subject to an order for 15 years or more. Jay is among that 10 percent.

His compulsory care order has been extended eleven times over the last 18 years. The last extension of his order was for another three years until April 2026.

A ‘high or very high risk of violence’

Since his detention, Jay has been assessed by multiple health professionals as posing a “high, or very high risk of committing acts of violence” if released into the community.

He displays patterns of “aggressive” and “unpredictable” violent behaviour, sometimes believing he is James Bond with a “licence to kill”. He reportedly has an obsession with feet, wanting to touch and lick other people’s, as well as drawing pictures involving cutting people’s heads or feet off. Health professionals are concerned he could act out these “violent fantasies” if released, noting that while Jay does not have criminal intent, he lacks an understanding of the consequences of his actions.

His index offences are not an “accurate guide to the level of risk he poses to the community,” one report says.

“There had been numerous other incidents both prior and subsequent to J becoming a care recipient that could have resulted in further criminal charges, and which supported the view that he posed a serious risk to public safety,” a Court of Appeal judgement notes.

These include a 2003 incident in which Jay brought a knife to school. In early 2004, he climbed out of his bedroom window and broke into a nearby school building smashing the windows stating he was James Bond “on a mission to ‘cut teacher’s head off’”.

Since being in care, he has reportedly tried to steal and hide weapons on several occasions and made specific threats of harm towards certain staff. He’s also reportedly assaulted staff looking after him and damaged property including breaking windows, furniture and punching walls and ceilings. These outbursts have left him with broken bones, needing stitches or surgery.

Jay’s autism means he has difficulty in differentiating between his fantasy and real worlds, according to the Mason Clinic’s lead forensic and intellectual disability psychiatrist, Mhairi Duff.

She told the Court of Appeal Jay means no harm to others but “fails to have a core understanding of the permanency of harm.”

“For example, in relation to his fantasy about cutting off people’s feet, Dr Duff recorded that J believes that his victims will get up and go home after he has cut off their feet,” the judgement notes.

He has pulled out two of his teeth after telling staff “he felt soreness…and wanted to see a dentist,” according to Mason Clinic notes. Clinic staff saw it differently, noting Jay may have done it so he could visit the dentist and ‘kill all the staff’.

Another psychologist who assessed Jay in 2016 and 2020 notes: “Unfortunately, these behaviours, obsessions and lack of insight have essentially not changed over a number of years despite environmental management, specific interventions and a very structured individualised programme of care.”

Jay was moved from secure care to less restrictive supervised care in 2011, but his behaviour deteriorated so he was moved back to community-based secure care in 2017. 

In 2020, he was moved to a secure unit at the Mason Clinic because he could “no longer be cared for safely in a community secure care environment.”

Experts have told the court any progress in reduction and management of the level of Jay’s risk would be “slow.”

Jay’s continued detention is justified because of the “very significant and ongoing risk” to the public, a judgement concludes.

‘They did this to him’

But Katie and her advocate and friend Karen Old disagree. They do not believe Jay is dangerous.

Old, who has worked with autistic people for 30 years, says it’s not uncommon for people with autism to pull their own teeth out when in pain, especially if they’re not given regular dental checkups, which is the case with Jay.

Jay’s behaviour while incarcerated is a common autistic reaction to trauma in his environment, which staff looking after him don’t appear to understand, Katie says.

Jay is hypersensitive to loud noises and doesn’t like being touched. He especially hates the sound of banging doors.

It was the noise of a neighbour slamming a door 20 years ago that triggered Jay to pick up the axe and break four of their windows, says Katie.

One of the arguments for why Jay cannot be released is due to fears he may hurt his mother, but Katie says this again is a misunderstanding of how Jay’s mind works. She doesn’t believe Jay would ever hurt her.

“He’s never threatened me before but [since being at a secure facility] he has said he’ll break my fingers.

“But I can tell you what he told me. He said: ‘This is what they did to me Mum. They break my fingers’,” she says through tears showing how staff hold his hands as they restrain him.

“He remembers everything they do to him too. And he copies this.”

Because Jay doesn’t like to be touched he will always resist being restrained.

Old believes Mason Clinic staff leap to restrain Jay too quickly because they don’t understand his autism.

“They're told to restrain him if he shows me any sign of aggression, even if he uses his hands to push someone away. Even gently.

“I’ve been there and seen him being restrained. He's trying to tell them to keep away from them… I need my space. He can't verbally say to you, ‘I need my space’…and it’s regarded as aggression.”

It’s painful for Katie knowing this is her son’s life.

“I don’t think they know anything about Jay. They have to know what he likes or dislikes,” she says. 

“He wasn’t like this before. It's because of the environment and how he's been treated. 

“They did this to him.”

Why are restraints still being used?

A 2021 Ombudsman inspection of the Mason Clinic unit where Jay currently lives found it was not always suited for people with autism.

It was too noisy, too bright and there were too many stimuli that were “negatively impacting” the wellbeing of autistic patients.

The Ombudsman also criticised the unit’s continued use of seclusion and restraints - mostly wrist locks and prone restraints - which had increased since the last inspection four years prior, despite promises they would be phased out by 2020.

The watchdog found Jay was also prevented from leaving his room, but this wasn’t being recorded as a ‘seclusion event’ in line with Ministry of Health guidelines.

Chief Ombudsman Peter Boshier told RNZ the use of restraints in New Zealand is “unacceptable and contrary to international human rights standards.”

“I expect the Mason Clinic to urgently look at stopping this practice,” he said in a statement.

“The Ministry of Health has recognised the harmful effects of calming and restraint techniques but I remain extremely concerned about how long it’s taking the Mason Clinic to stop using them.”

Boshier also wants an end to the use of seclusion in all secure facilities.

Te Whatu Ora has declined to answer questions about Jay’s care, including how often he is restrained and secluded; what rehabilitative activities he partakes in and how often he has access to the enclosed courtyard.

Figures provided to RNZ show the number of restraint events recorded in 2022 and 2023 in the unit where Jay lives appear to be going down.

“Seclusion or restraint is only used to ensure the safety of people accessing the service, staff or others or as an emergency intervention when all other strategies and approaches have been tried without positive effect,” it said in a statement.

Staff using “restrictive practices” ensure they comply with Restraint Minimisation and Safe Practice Standards and Health New Zealand’s Restraint Policy.

“Every episode of seclusion or restraint is reviewed by staff for learnings that might prevent a repeat episode.”

The Ministry of Health admits its current guidelines for secluding and restraining people under the Act are no longer suitable.

“We recognise that the current IDCCR guidelines are not fit-for-purpose and require an update to better prioritise recipients’ rights and well-being and reinforce our position that seclusion use can be harmful for care recipients,” the ministry’s mental health director, John Crawshaw, says in a statement. 

“In light of that, we have asked services that provide hospital-level care for care recipients to use the 2023 Mental Health Act guidelines until new IDCCR Act-specific ones are provided.” 

It’s not known when these will be provided, but the updated Mental Health Act guidelines say seclusion should only be used as a last resort “to prevent harm in emergency situations.”

The ‘highly problematic’ question of funding

Katie and Old believe Jay’s behaviour is also due to the lack of rehabilitation he’s been offered since being placed under the Act, and a life spent largely alone in his room.

Some of the clinical psychologists who have assessed Jay over the years agree.

A 2016 assessment by clinical psychologist Olive Webb, paid for by Jay's family and carried out when he lived in a secure community-based facility, found him “well spoken” with  “impeccable manners” but said he was living in a “barren” bungalow he had not left in months.

The windows were covered with blankets to stop him breaking them and there were no visual aids, commonly used for people with autism, on the walls.

Jay’s frequent and much loved walks in a nearby park had been put on hold due to staff shortages. He required three people to accompany him, even though he had “never presented with violent behaviour when out walking.” 

It was also noted Jay was not being looked after by staff who had specialist training in autism or intellectual disability, despite this being a requirement of a 2005 care plan. He was also not being given opportunities to develop more “socially acceptable” interests to compete with his fascinations with James Bond and violence.

Jay’s “long detention under the IDCCR Act has failed to provide him with these necessary elements of his support,” the report states.

“People with [Jay’s] level of challenges can be -and are- supported outside of this Act.”

An October 2023 assessment by a state-appointed clinical psychologist raises concerns over the care and rehabilitation being offered to Jay currently.

“The situation in which [Jay] finds himself is unlikely to change unless there was a significant improvement in the staffing level within the unit, and in provision of necessary equipment, such as a suitably fitted-out vehicle that could safely support outings.”

While the assessment recommended Jay remain in secure care, it noted: “Better staffing ratios would permit more frequent social interaction with [Jay] allowing him to be engaged in a wider range of enjoyable activities, and thereby alleviating the prevailing dynamic within which staff contact tends to revolve almost entirely around security and control. 

“It is appreciated however that securing the funding that might allow for improved service delivery is highly problematic at the present time.”

Court documents show some health professionals believe there is little that can be done to rehabilitate Jay, but Old disagrees.

“I believe everybody can be taught. That’s the problem with this situation, he’s had no rehabilitation after nearly 20 years. Even though that’s what the Act is supposed to be about.”

She believes Jay can live at home safely if he’s given the right support.

“Given the right care in the community, like Ashley Peacock eventually was, he would thrive.”

A cottage by a river

Ashley Peacock is an intellectually disabled, autistic man with a schizophrenic illness who was detained under the Mental Health Act for 20 years, spending much of that time in a small seclusion room. 

He was released in 2018 after the Ombudsman stepped in and now lives in a cottage by a river where he loves to fish, with full time carers.

“Ashley was once considered the most dangerous man in New Zealand,” says John Taylor, the former executive director of Community Connections, the organisation that provides Peacock’s home and care.

“He wasn’t that dangerous, but he certainly reacted very negatively to being treated badly.”

Community Connections staff worked with Peacock for five years while they negotiated his release and funding. “We got to know him quite well,” says Taylor, who still regularly visits him.

It was during this period that Taylor asked Peacock to describe his ideal home.

“He told me it was in a cottage by a river, because he loved the outdoors. He loves surfing and is a very good fly fisherman.

“We ended up finding a bit of land like that, built a small cottage on it for him and he’s still there.”

It’s a world away from the mental health facility he spent half his life in, he says.

“The facility had a lot of busyness, a lot of noise, none of which suited Ashley. Because of his autism, he could not cope.”

Peacock was often restrained there, leaving him with broken bones and teeth.

“People were convinced he was too dangerous to be on the outside.”

Taylor believes Peacock’s behaviour was often misunderstood.

“His parents struggled to get anybody to think about his dental health while he was locked up. After about eight years, they finally got him under general anaesthetic to extract quite a few rotten teeth.

“Ashley’s behaviour became quite a lot better and more manageable after that…but he’s been hugely traumatised by 20 years in an institution.”

Taylor says looking after people like Peacock in the community is expensive, but often cheaper than leaving them in an institution.

“Over the years, there’s been less spent [on Peacock’s care] because we need fewer staff.”

When Peacock first moved into his cottage he had three staff looking after him because his “risk profile was quite extreme,” says Taylor.

“But in fact, he has never required three people to look after him since leaving the institution. Usually, the fewer the staff the better, so very often we only have one experienced staff person who knows him well and supports him. At the most, there are two.”

Taylor says the lack of funding for community-based care such as this means it is harder to find and retain skilled staff, leading to more people being held in unsuitable institutions.

He worries the Act allows intellectually disabled people to be incarcerated purely on the premise they might offend in the future.

“For me, that’s hugely problematic.”

The least risky option

It’s also problematic for clinical psychologist Paul Skirrow, who has worked with intellectually disabled people held in secure forensic facilities in the United Kingdom.

“The research is fairly clear that we are very poor at predicting risk. Human beings are notoriously bad at judging risk.”

It comes down to a phenomenon known as the ‘availability heuristic’.

“If you're on an aeroplane, and the aeroplane starts shaking, our fear makes us think this plane is going to crash. But actually we know that is highly unlikely as hardly any planes ever crash. 

“But our fear makes us think that the risk is higher,” explains Skirrow, who is also a College of Clinical Psychologists spokesperson and advisor.

“So if somebody tells you, I'm going to kill somebody, you believe them, because if you don't believe them, the alternative is very scary. 

“And to a certain extent that is a good thing because we don’t want to go the other way and have incredibly risky people out on the streets. But we can get it wrong quite frequently, and it’s often to the detriment of the people who aren’t as risky as we think they are.”

Skirrow acknowledges clinicians will have to live with the consequences if they get it wrong, which is why they favour the least risky option, even if it’s not always the right thing to do.

“When someone’s behaviour is challenging or scary, for want of a better word, the tendency is to want to lock them up and put them in a small room where they can’t escape.

“But in my experience that has always been the worst thing to do.”

There need to be provisions to ensure the person cannot hurt others or themselves, he says.

“But sometimes it’s about giving them more space, not less. Giving them a chance to be outside, to have fresh air and exercise.”

His former forensic intellectual disability clients in Liverpool were often transitioned from a facility to the community with a high level of staffing. “But very quickly you’d find they didn’t need it because they’re in a different environment.”

There was not one client who did not thrive in their new environment, or had to be returned to a secure facility, he says.

“In my experience the more you restrict people, the worse they become.”

The fight for Jay

Ellis has been fighting, unsuccessfully, for eight years to give Jay more freedom.

It’s one of the last cases on his books ahead of his retirement, but he’s putting those plans on hold for now.

“This is just too important what’s happened to him. His life, his 20s and 30s, has effectively been destroyed.

“He’s been locked up for breaking windows on the basis he’s got disabilities that make matters far worse for him than anybody else.”

In November 2022, Ellis took Jay’s case, on behalf of Katie, all the way to the Court of Appeal , arguing the Act is discriminatory and Jay’s compulsory care order contravenes the Bill of Rights Act. 

Ellis believes Jay’s detention is arbitrary and his punishment is disproportionately severe, but in a judgement issued just before Christmas the Court of Appeal dismissed the arguments on all accounts. It said Jay’s detention was justified because of the risk of future violence he poses.

Ellis is not giving up, however. Last month he filed an application to take Jay’s case to the Supreme Court.

“And if that’s the end of the road domestically, then there’s the UN.”

Ellis believes Jay’s situation is very similar to that of intellectually disabled Aboriginal man, Marlon Noble , who spent 10 years in jail without being convicted of a crime. 

In 2016, the UN Committee on the Rights of Persons with Disabilities found his human rights were being violated and his detention was discriminatory and arbitrary.

“And that is what Jay’s case is about,” says Ellis.

“Jay’s done nothing more than anybody else, but he’s been discriminated against because of his lack of intellectual prowess.

“Everybody else in the country gets a trial, but because you’re intellectually disabled and autistic the court decides you don’t get a trial.”

Ellis, who has met Jay several times describes him as a “pussy cat”.

“He’s a lovely person. He has extraordinary abilities, but the court judgements rarely comment on that.”

He believes part of the problem is that only two of the 13 judges who have presided over Jay’s case since 2016 have personally met him.

“He’s been adjudicated totally in the abstract, and that is very sad. It’s quite an issue in its own right as to whether judges can lock you up if they’ve never seen you.”

In its decision, the Court of Appeal noted experts had advised Jay could become anxious and stressed by visits from officials he had not previously met.

In 2014, the UN Committee on the Rights of Persons with Disabilities raised concerns that New Zealand judges received no specific training on the Convention on the Rights of Persons with Disabilities or on the requirement that justice be accessible to anyone with a disability, including those with intellectual and psychosocial disabilities.

It recommended Te Kura Kaiwhakawā - the Institute of Judicial Studies run training programmes on these two things in collaboration with disabled persons’ organisations.

The Institute says it now educates judges on “building an understanding of the barriers to accessing justice, including neuro-disability.” 

The case to repeal and replace

The UN has further concerns.

Both its Committees on Torture and the Rights of Persons with Disabilities have, for years, been urging successive governments to repeal parts of the Act.

It should not be legal to detain a person with disabilities for longer than the maximum length of a sentence they would be liable to in the criminal justice system, they argue.

Both committees have also raised concerns about the “excessive use” of seclusion in mental health facilities, noting successive governments have failed to implement their recommendations.

Why hasn’t the law been reviewed in the last 20 years? The Ministry of Health says it is currently preparing advice to ministers on whether a wider review of the Act should take place.

The Ombudsman and Human Rights Commission say the Act is no longer fit for purpose, calling for it to be repealed and replaced.

“As it currently stands, the Act reinforces negative notions of disabled people and allows both substitute decision-making and forced medical interventions/compulsory treatment,” Boshier told RNZ in a statement.

“The IQ test is a key example of the continued use of a medical-model approach to disability as opposed to a social model and rights-based approach.

“There’s an urgent need to ensure health and disability legislation is fit-for-purpose and aligned with international human rights standards.”

Disability Rights Commissioner Prudence Walker says all legislation - including the IDDCRA - that doesn’t comply with the convention should be repealed and replaced.

“When a disabled person is held for long periods of time, based on possible risk, it is effectively preventative detention, which in the criminal justice system has a much higher level of protection for the individual than the IDCCR Act.”

She wants a regime that “first and foremost guarantees disabled people the support they need to be involved in all decisions about their future”.

The number one house

That’s all that Katie wants for Jay.

On her coffee table, next to the pile of old photos, are a stack of letters written by Jay.

Letters to the many judges who have decided his fate over the last 20 years. 

As Katie sifts through them, it’s clear Jay knows what his ideal home would be.

“Please Judge,” he writes in neat print, “I want to go to my number one house.

“Please Judge…I want to be with my mum all the time.”

* Jay and his mother have been given pseudonyms for legal reasons