Anita Gibbs addresses Dr David Clark about Foetal Alcohol Syndrome, arguing those with the condition deserve to be on the same playing field as people with other disabilities and not treated as outliers who ‘just’ result in early death
COMMENT: On February 25 the Hon Dr David Clark announced that four life-shortening conditions would enable New Zealanders with these conditions to withdraw their KiwiSaver savings early. One of those conditions, a disability, is Foetal Alcohol Spectrum Disorder (herein FASD).
This lifelong disability, caused by exposure to alcohol prenatally, averaging at 3000 babies born every year in Aotearoa, certainly is life-shortening, and has substantial poor life outcomes for those living with it. As someone who has written to Clark when he was health minister about the lack of identification of, or support for, children and young people living with FASD, I would like to challenge his rather tokenistic gesture in February.
People with FASD are born with multiple challenges that can indeed shorten their lives; these include some physical ill health but more significantly the symptoms of their disability mean they are highly vulnerable to being risk-takers, have serious mental health issues, they are more likely to seriously harm themselves and they are more likely to be harmed by others.
They are also more likely to injure themselves and others; and they are more likely than people who don’t live with FASD to get into trouble with the law, and to suffer substance misuse disorders. People with FASD often do not get the medical or mental health care they need because they cannot afford to see a doctor - or doctors do not take them seriously when they appear with physical or anxiety symptoms that need investigating.
Well Dr Clark, you did us a favour by signalling that FASD is a life-shortening condition and since February people have been asking me, “What is this FASD thing? How significant is it? What are its impacts?”
In reality, most of New Zealand knows little about FASD and does not realise that we have no information on the true numbers of those living with FASD. New Zealanders don’t realise that we rarely provide diagnostic assessment services; that even when people get diagnosed there is no funding to support helpful interventions; that a lot of children get excluded from school because they can’t be resourced to stay there.
New Zealanders might have been asking the question: “Wow, well I’ve heard about Down Syndrome; I know about Huntington’s and Cerebral Palsy but what is FASD?”
The research evidence is that currently, most people with FASD are not going to have long working lives because of all the impairments and secondary conditions they live with. They are rarely going to get well-paid jobs and they simply are not going to save much money in their KiwiSaver.
Sure, it’s great that they could take the KiwiSaver money early but their reality is that they need funded support to even get to a position of obtaining school qualifications and decent employment opportunities. The fact that FASD is still excluded from the disability services support is unacceptable, especially because Autism, a very similar neuro-disability is accepted and is far less prevalent than FASD.
Those in the know have been campaigning for 30 years now in New Zealand to reduce the harm caused by prenatal alcohol exposure. FASD has been talked about for a long time in New Zealand and over this time every single government, including yours, has chosen not to fund FASD.
Many of us who have been advocating for many years have written to you, Dr Clark, when you were health minister, and you always wrote back letting us know how committed you were to more funded support, but no money of any significance has ever been provided to families or to organisations wanting to help families where FASD is an issue.
Those living with FASD are currently better off being diagnosed with Autism, with ADHD, or with Sensory Processing Disorder, in fact, with all manner of other physical disabilities so that they can access disability services because your Government won’t list FASD as disability - yet you call it a serious life-shortening condition worthy of early KiwiSaver access. Something here is not quite adding up.
To be kind, including FASD as one of the four listed diseases worthy of early KiwiSaver withdrawal has perhaps at least acknowledged FASD is a significant issue for New Zealand, but in reality it feels like more of a tokenistic gesture and a way of continuing to avoid providing decent resources to support those living with FASD to live longer and more productive lives.
Those with FASD deserve to be on the same playing field as those with other disabilities and not treated as an outlier that ‘just’ results in early death. Early death would actually not occur if lifelong supports and services were provided, the emerging research is very clear on that.
Anita Gibbs has a research interest in Foetal Alcohol Spectrum Disorder and last year received the Critic and Conscience of Society Award by the Gama Foundation for her tireless advocacy raising the profile of the neurodisability in New Zealand.
