Children with fetal alcohol spectrum disorder could be waiting years to get an assessment as demand outstrips funding, according to a Tauranga social agency.
Surveys conducted by SocialLink in 2018 found the waitlists from the Bay of Plenty District Health Board were recorded as up to two years.
The health board says its resources are stretched with no funding for the disorder, but the Ministry of Health says DHBs are responsible for determining the health needs of their local populations and meeting these needs within their available funding.
SocialLink general manager Liz Davies said that with a growing population and demand which outstripped funding she suspected the waitlists would have worsened.
Those working on the ground said the lengthy waitlist was being fuelled by poor policies, a toxic drinking culture, under-resourcing, and lack of evidence-based policy.
The disorder was an umbrella term describing the range of physical, cognitive, behavioural and neuro-developmental disabilities in babies that arose from the mother drinking alcohol while pregnant.
It was linked to increased mortality, abuse and neglect, poor educational achievement, entering the criminal justice system, benefit dependence, mental health, and substance abuse issues.
It could also cause low birth weight, distinctive facial features, heart defects, behavioural problems, and intellectual disability.
The effects were lifelong.
The Ministry of Health said up to 3000 children nationwide were born with the disorder each year - a conservative estimate.
But without any substantial New Zealand research, the figures were based on recent research from Canada and the United States and evidence of higher rates of alcohol consumption during pregnancy in New Zealand than North America.
Tauranga GP Tony Farrell said, in his view, a poorly regulated alcohol industry with cheap alcohol, widely advertised in poorer areas, drove the issue.
"This is a preventable public health problem causing permanent learning and behavioural problems, costing the country millions per year in health and justice costs.
"I am not holding my breath around the Ministry of Health plan as we need public health policy as a preventative measure."
The Taking Action on Fetal Alcohol Spectrum Disorder: 2016–2019 plan was a cross-agency commitment designed to provide co-ordinated support to those on the frontline, rather than establishing disorder-specific services and systems, according to the ministry's website.
Oranga Tamariki, the Department of Corrections, police and the Ministry of Justice were all key contributors to the plan because a significant proportion of their clients were affected by fetal alcohol spectrum disorder.
Farrell said that in his opinion more alcohol regulations were needed, including increasing excise tax, reducing availability and stopping advertising of alcohol.
"We hope that our Government would have enough regard for unborn babies to put an evidence-based policy in place."
Bay of Plenty DHB mental health and addictions portfolio manager Caleb Putt said the assessments required a multi-disciplinary team, including a paediatrician, clinical psychologist, occupational therapist, and speech and language therapist.
However, these services were under referral and workforce capacity pressures.
One in two pregnancies were affected by alcohol, one in 10 was exposed to high-risk levels and two-fifths were unplanned, he said.
"Many children are exposed to alcohol before their mothers realise they are pregnant."
Putt said the drinking culture, increasingly promoted to young women, made prevention challenging.
He said some children in the health board area had been assessed but this tended to be through private providers for a fee.
The DHB was prioritising integrated approaches across services in the future, he said.
"To date, there has not been funding released to services such as paediatrics or mental health to recruit staff to develop integrated assessment pathways for this issue or projections regarding possible demand."
A service for women with addiction and high complex needs in Ōpōtiki and Kawerau is being established early next year.
Putt said for assessment and support to be adequately addressed, it needed to be established and resourced nationally.
This would ensure consistency of specialised supports, "rather than relying on ad hoc development within already stretched services locally".
Clinical neuropsychologist Sarah Goldsbury said the ministry might have acknowledged the disorder as a disability, but there had been no changes to outdated policies.
"Very few DHBs are able to offer assessments for [the disorder]. And those that do have virtually no ability to provide the specialised care and follow-on support that is best-practice after diagnosis."
Goldsbury travels the country to carry out the neuropsychological component of disorder assessments for children and youth in temporary and permanent care and Youth Court.
"We also have research suggesting ... approximately 25 per cent of New Zealand women report some alcohol use after pregnancy recognition and 10 per cent binge drinking."
The rates of women drinking in New Zealand has risen over the past 20 years, which she said had seriously influenced the rise of fetal alcohol spectrum disorder.
She said those with the disability should be entitled to Government-funded assessment and support, and judgment of women who drank while pregnant prevented mothers and mothers-to-be from seeking help.
"We [also] need women to understand basically that they either need to be on contraception or abstain from alcohol."
Fetal Alcohol Spectrum Disorder Care Action Network chairwoman Claire Gyde said it was "appalling" there was no funding from the ministry given the high prevalence of the disorder in New Zealand.
The organisation, run by volunteers, was formed in 2013 to support whānau with efforts focused on the families already struggling with the diagnosis of their children.
The organisation was calling for the disability to be funded because a lack of knowledge and therefore lack of diagnosis had long-lasting effects.
The Ministry of Health admitted there were limited publicly available specialists with the capacity to undertake the ideal multi-disciplinary assessment and diagnosis, "but all regions will have some capacity", a spokesman said.
When asked about the lack of research, he said the research would be commissioned to identify what an "effective system-wide approach" would look like.
However, further work was needed to determine exactly how or what steps need to be taken.
"A key aim of the Fetal Alcohol Spectrum Disorder (FASD) Action Plan going forward is to strengthen the approach to supporting people, individuals and whānau affected."
Cross-agency pilots would be implemented and research would be done to determine the appropriate response, he said.
The ministry spokesman said people with the disorder who have eligible disabilities and identified needs were able to receive ministry-funded disability support services (DSS).
"Children with suspected FASD who are too young to be formally diagnosed can also access DSS child development services, if developmental delay is identified."
Last year, $7.6 million from the proceeds of crime was put towards developing clinical diagnostic guidelines and training for dealing with fetal alcohol spectrum disorder.
Last year, an intensive holistic service for pregnant women and parents with children under the age of 3 who experience problems with mental health, alcohol and other drugs launched in the Eastern Bay of Plenty.
Proceeds of crime 2019 $7.6m funding has been allocated to:
• Extending existing pregnancy and parenting services to assess needs of children of women with addiction issues and provide ongoing support to parent children.
• Partnering with two child and development services to reconfigure existing models to address the behavioural and learning needs of children with alcohol-related neurodevelopmental issues sooner.
• Development of fetal alcohol spectrum disorder clinical diagnostic guidelines and training for clinicians.
• Piloting interventions with youth justice and corrections to improve self-regulation of young people in a youth justice facility and young offenders in prison.
• Supporting families to parent children with the disorder.
• Research to identify what an effective system-wide approach to respond to fetal alcohol spectrum disorder and neurodevelopmental disorders would look like.
'She was a very difficult baby, she required constant, constant attention'
"Her first time at the public swimming pool, she was in the toddlers' pool, and she just held a child's head under the water," a Tauranga woman remembers.
"She's not evil, she wasn't trying to hurt her ... a fetal alcohol brain doesn't link cause and effect."
The woman and her late husband fostered the child from Oranga Tamariki when she was 3 weeks old, and she has since taken guardianship of the girl, who is now in her teens.
"As a baby ... her development was very delayed, so we knew something was up. She was a very difficult baby, she required constant, constant attention."
The woman said that from an early age daily interactions were constant uphill battles, involving stealing, lying and manipulation. And the child just couldn't sit still.
While the child's IQ is in the normal range, "the way their brain works is different, there are gaps ... it can't link cause and effect".
At 18 months, it was suspected during a visit to the paediatrician that the toddler had fetal alcohol spectrum disorder.
"He said it's probable ... but he couldn't diagnose it," the woman said.
It was not until the child was 10 that the woman received funding from Permanent Caregiver Support Service, through Oranga Tamariki, for a test that cost $6000 plus $3000 for aftercare.
The funding came about, the woman said, because she was "absolutely beside myself, and said I can't take it any more".
But that's where it ended.
"The diagnosis helped because it gave me confidence that there is a problem here ... [but] there isn't any [support]."