Faye Hallett and her son Ethan. Photo: Supplied / RNZ / Dan Cook
Like "a caged tiger" or a dead-eyed zombie, drugged up to the eyeballs to keep him quiet.
Those were the two versions of 25-year-old Ethan Hallett during his three-and-a-half month "incarceration" in Waitakere Hospital, according to his mother, Faye.
The non-verbal autistic - a "sociable, vibrant young man" - was admitted to hospital in December after developing jerky body movements and balance problems.
Faye said at times she feared he would die in hospital.
"I really was losing him day by day. I would go there every day after work and when I got there at quarter-to-five, he would be out of it on his medication and slumped over unresponsive.
"He was just really sad. He absolutely lost his sparkle."
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Waitakere Hospital wanted to discharge Ethan in January, but his residential provider Spectrum Care refused to let him go home because he needed extra support.
"I believe that if they had let him go home when they rang in January and said he could be discharged, he would be in a much better state than he is," Faye said.
"The longer he spent in hospital, the more medication they gave him and the worse he became. That's been confirmed by the neuropsychiatrist we saw on the day Ethan was discharged."
Waitakere Hospital. Photo: Google Maps
Doctors initially gave him a tentative diagnosis of opsoclonus-myoclonus-ataxia syndrome (OMAS) - a rare autoimmune disorder which causes involuntary spasms of the limbs and eyes.
However, he did not receive any treatment and appeared to be left in limbo as the weeks dragged on, his mother said.
She said staff resorted to upping his dose of the powerful antipsychotic drug risperidone to "keep him quiet", but it left him unable to sleep for up to three nights at a time.
One day she arrived to find Ethan a prisoner in his room.
"The healthcare assistant was sitting up against the door on a chair so he couldn't get out and his wheelchair was locked in the bathroom so he couldn't use it.
"He was lying on a mattress on the floor, and that was it. It was like solitary confinement on steroids."
Desperate to get help for Ethan, she started calling agencies, the health and disability commissioner and the Ministry for Disabled People, and lodged an appeal with the Family Court in an attempt to force Spectrum to let him go home.
Someone gave her the contact for disability advocate, Jane Carrigan, and that was when "things really started to move".
Carrigan insisted staff dress Ethan every day - "he spent three months in pyjamas" - and give him some kind of routine.
She questioned why Ethan was not being treated for OMAS - and it transpired that doctors had already discounted that as a diagnosis, although never the family nor Spectrum were aware of this.
"Jane started putting out this daily communication so everyone was on the same page. Before she became involved, no one was talking to anyone else."
Spectrum initially suggested putting Ethan in a house by himself with caregivers, which Faye said would have meant he was just as isolated and unhappy.
Carrigan said hospitals were sometimes reluctant to admit people with complex needs like Ethan, who "had a whole room to himself for three-and-a-half months that he shouldn't have had".
"They know the minute they let them in, they'll end up carrying that person for months. So it's a war of attrition basically between DHBs, service providers and the Ministry for Disabled People.
"It's torture for someone like Ethan to be incarcerated, as he basically was in hospital. And the same for all those other people."
Providers, which stood to lose funding if a client was away for more than 28 days, were too quick to put someone else in their rooms, she said.
"If a person's room is their room, it should be their room if they're in hospital for six weeks or six months. If you're coming out of hospital, you should get to go home."
Too often, younger people with "dual diagnoses" (such as a disability and a neurological problem) were shunted off to nursing homes for the elderly.
Faye and Ethan Hallett. Photo: Supplied
"That's wrong for the individual and it's wrong for the people who live in the aged care facility, it's like a dumping ground.
"They say, 'You need 24-hour care and a nurse around? We'll put you into that home'. They talk about 'choice and control' ad nauseam, but that's the reality."
Ethan finally goes home
Ethan finally went home at the end of last month after Spectrum got extra funding to support him.
"The first time he walked into his bedroom, he did his happy autistic flap that I haven't seen for months and months," Faye said.
"He was so happy to see his things - it was beautiful, it was so good."
Spectrum Care spokesperson Justin Walsh said the provider had been developing "a tailored solution" for Ethan - but after he made some progress, it agreed he could be safely supported at his old home.
This did require extra funding, but while the funding model could sometimes "present challenges" when situations changed, there had been no problem in this case, he said.
A spokesperson for Te Whatu Ora Waitematā, which runs Waitakere Hospital, said it sympathised with the family and shared their frustration with the lack of progress.
"An acute general medical ward in a busy metropolitan hospital is not the best place to provide the type of ongoing, 24/7 non-medical care that their loved one requires."
Te Whatu Ora "repeatedly escalated" its concerns about the delays in finding appropriate accommodation to relevant stakeholders, he said.
Meanwhile, the hospital had made every effort to keep Ethan safe such as minimising the risk of falls.
"At one point, this included placing his mattress on the floor of his room - a temporary safety precaution."
A dual disability mental health specialist had given guidance on appropriate medication for Ethan, he said.
