Background to diagnosis in Aotearoa

In response to increasing calls for information from our membership, FASD-CAN set out in June 2023 to establish the availability and location of FASD diagnostic services in Aotearoa. There is currently no other publicly available list of clinicians who can diagnose FASD.

We engaged a very experienced paediatric nurse to undertake this research on our behalf.

An early diagnosis is a key factor for good life outcomes for people with FASD so that appropriate supports and interventions can be put in place for families and at school. 

Research shows that failure to engage at school makes rangatahi with FASD more likely to end up with negative life outcomes involving substance use, engagement in self-harm and high-risk scenarios, mental health challenges and involvement in youth and criminal justice.

What we mean by FASD diagnostic services

When we refer to FASD diagnostic services we mean that the particular service or provider has had the specialist training to undertake an assessment to identify if a person meets the FASD diagnosis criteria.

An FASD assessment requires a clinician specifically trained in diagnosing FASD.  Ideally, this would be done within a multi-disciplinary team including a paediatrician, neuro-psychologist, a speech and language therapist and an occupational therapist. Having a key worker to work with the family/ whānau during and after the process is also highly desirable.

New Zealand currently uses the FASD diagnostic guidelines developed by Canada, however their use is currently under review by the Aotearoa FASD Diagnostic Guidelines project commissioned by Te Whatu Ora, with a report due out in 2024. 

What we asked clinics and services

In the questionnaire we sent to clinics and services, we included the following questions:

  • What services are available?
  • What is the waiting time to be seen?
  • What is the approximate cost?
  • What is the referral process?
  • How can people contact them?

Some clinics and services chose not to share certain information for various reasons. Some failed to respond at all despite multiple attempts to contact them; these included some Te Whatu Ora sites.

Results – an overview

We found only 13 services able to offer an FASD assessment and diagnostic service – but two of those (Linda Gow and Koru Specialist Services) had two separate clinics, so there are in fact 15 clinics in Aotearoa. Some services, such as The FASD Centre Aotearoa in Tamaki Makaurau, Koru Specialist Services and others, will also travel to other parts of the country to undertake an assessment.

Ten of the clinics are located in the North Island but there are only five in the South Island. Perhaps most disappointingly, there are only four Te Whatu Ora publicly-funded services, and they are all in the North Island: Northland, Hawke's Bay, Taranaki and Lower Hutt.

This means Te Whatu Ora does NOT offer publicly-funded FASD diagnostic services in Tāmaki Makaurau/Auckland, Bay of Plenty, Lakes District - Taupo/Rotorua, Gisborne, Wairarapa, Whanganui, Nelson/Marlborough, Canterbury, South Canterbury or Southland.

In some large regions such as the Waikato and the South Island, we found no publicly-funded service provider that could provide an FASD assessment.

Most privately funded assessments cost of between $3,000 - $7,000 which is far beyond most whānau can afford for such an essential service. We also understand from the information received that wait times vary and change, but can be up to two years for publicly-funded services.

Lack of progress of the FASD Action Plan 2016-2019

Unfortunately, the results of this research have highlighted the lack of progress to improve access to FASD assessment and diagnostic services in our country.

 In the FASD Action Plan 2016-2019, the Ministry of Health made a commitment to develop and test tools to support the diagnosis of FASD and to investigate ways to upskill existing clinicians and embed the tools into routine practice. 

However, in contradiction of the Action Plan, our review indicates a decrease in FASD diagnostic assessment capability across Aotearoa.

FASD-CAN is extremely disappointed to note this lack of implementation of the Action Plan.  Despite the acknowledged benefits of diagnosis described in the Action Plan, there has been no strategy developed to carry out this upskilling.

Funding and a cohesive professional development strategy is needed to provide more professional training to develop diagnostic capability and capacity.