Family’s mental health access pain
When my nephew James stopped smiling, we learned a painful truth about New Zealand’s mental health services.
‘‘It’s late at night. I’m calmly reading up on the safe dosage limits of my son James’ antipsychotic medication. I don’t have a medical qualification but at this point as I listen to my adult intellectually disabled son screaming with rage, the internet is our only medication guide.’’
These are sentences which belong in a dystopian novel, or a newspaper from the 1890s, or a country with a health system held together by safety pins.
Not from Aotearoa New Zealand, not in March 2021.
And especially not from my wise, pragmatic sister.
My nephew James turned 24 this week. He spins pots like a whizz, is as friendly as a fish, and is intellectually disabled. He inherited fragile X – a genetic ‘‘stutter’’ on his X chromosome. Although rare, it is the leading inherited cause of intellectual disability.
Despite a dual diagnosis of fragile X and autism which have made it impossible for him to live alone, James is popular, and a keen chef and ceramicist.
Until January, when his smiles and handshakes began to wane.
‘‘He became more and more mentally unwell within the space of a few weeks,’’ my sister says. ‘‘We pulled him out of his residential house – where he was supported by care workers – and he came back home. We tried everything in our extensive bag of tricks – but he continued to spiral downwards.
‘‘The happy-go-lucky boy who befriended everyone he met was replaced by a large aggressive male screaming. Threatening. Delusional.’’
Anita has helped design a program for fragile X families, and thought she had seen everything the condition could throw at her. But this was very, very new. Anita and husband Chris called their GP, who referred James to the local mental health team.
Weeks went by. No-one made contact. ‘‘I did everything I could to locate a psychiatrist, private or public, with no success. Psychiatrists seemed more myth than reality. People told me that they exist . . .’’
I, pathetically, even made an appeal on Twitter. ‘‘Hi lovely tweeps – my wider family needs your help. We need a psychiatrist experienced at working with those with an intellectual disability – preferably in the Wellington (NZ) area. All suggestions welcome.’’
There were one or two thoughtful replies. A name. But nothing came of it.
New Zealand’s mental health services seem unable to cope with a relatively common, though unwelcome, relation of intellectual disability – rocky mental health.
Especially if no-one has been arrested.
How common? Research published in the Australian & New Zealand Journal of Psychiatry in 2013 showed that in one group of prisoners, 24 per cent had an intellectual disability. Of these, significantly more had a mental health condition than regular prisoners.
TNew Zealand’s mental health services seem unable to cope with a relatively common, though unwelcome, relation of intellectual disability – rocky mental health. Especially if no-one has been arrested.
he paper’s title says it all: Co-occurring mental disorder and intellectual disability in a large sample of Australian prisoners.
Many studies show the intellectually disabled are at higher risk of depression and anxiety, and conditions like psychosis, which is treatable – although early attention is essential – especially during the first episode.
‘‘Our doctor had difficulty getting the information he needed to know what to prescribe for James’’ says Anita.
‘‘People with an intellectual disability do not have access to adequate mental health care in New Zealand. They are discriminated against.’’
The couple turned to a specialist they had worked with before, although she lives in Colorado. Over a zoom consultation with Marcia Braden, a clinical and scientific adviser to the US National Fragile X Foundation, Dr Braden agreed to help treat James.
She knew the family, and is a world expert in James’ disability – which meant she could see what was new about James’ behaviour, and what might be done to help. And now James is feeling better. He has also been seen, at last, by medical professionals from the beleaguered Intellectual Disability Service based in Porirua, near Wellington.
‘‘By now I have a great sense of peace,’’ Anita told me. ‘‘I finally understand what is happening, why it happened and best of all that we are doing everything right.’’
Anita, Chris and James’ experience is backed up by a 2019 study published in the journal BJPsych International: Services for adults with intellectual disability in Aotearoa New Zealand, by Jane McCarthy and Mhairi Duff.
‘‘Aotearoa New Zealand has specific legislation for people with intellectual disability presenting to the criminal justice system and has unusually and explicitly excluded people with intellectual disability from mental health legislation since 1992. Partly as a result, most health professional training schemes have little focus on issues for people with intellectual and developmental disabilities.’’
The authors urge the creation of multidisciplinary specialist mental health teams, ‘‘with the specific functions of managing the mental health needs of people with intellectual disability and autism’’.
The lack of access to mental health services for those with intellectual disability shifts the weight of care to their parents, brothers, sisters and support workers.
We know that James is privileged. His mother has worked in the disability sector for years, and the family has resources and contacts others do not. But this didn’t save them from months of needless suffering.
Anita has seen the devastating impact on families and health providers of a chronic lack of trained care.
‘‘People are receiving very little specialised help. They can be hospitalised due to over-medication – and support staff can be physically assaulted.’’
Intellectually disabled New Zealanders and their carers deserve more than Doctor Google in a mental health crisis.