THE PAEDIATRIC SOCIETY OF
NEW ZEALAND
Secretariat:
Email:
Denise Tringham
P O Box 22 234
Wellington
Tel: (04) 938 4827
Fax: (04) 976 4827
psnz@paradise.net.nz
8 September 2004
ORAL SUBMISSION TO THE PARLIAMENTARY SELECT COMMITTEE
REGARDING FETAL ALCOHOL SYNDROME/FETAL ALCOHOL SPECTRUM
DISORDER
Presented by: Dr Andrew Marshall, Developmental Paediatrician, as official
Representative of Paediatric Society of New Zealand
Endorsed by: Paediatric Society 6th September 2004
BACKGROUND:
Written submission and evidence provided to the Select Committee by Fetal Alcohol
Support Trust and the Ministry of Health response were reviewed.
FETAL ALCOHOL SUPPORT TRUST POSITION SUMMARISED:
 National Registry
 Identification
 Government funded multi-disciplinary diagnostic assessments,
recommendations for lifetime planning and support
 Support to caregivers
 “wrap around” services (Respite, guidance, continuing education, financial
assistance, trained volunteers mentoring families)
 Training in FASD of all community workers and professionals
 Schooling
 Additional supports, small classes, specific strategies, permanent automatic
support for all diagnosed, no funding caps
 Alternative accommodation including specialised group homes with specific
programme and supports
 Encourage birth control for high risk individuals
 Screening for all high risk individuals: all in CYF care, all offenders,
 Public awareness (warning labels, info campaigns)
 “Evidence” section contains following points:
 required medications “mucked around by school officials”
 doctors/psychologists do not diagnose it nor prescribe appropriate medications
because this is not a notifiable condition
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RESPONSE BY MINISTRY OF HEALTH SUMMARISED:

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no such thing as a “notifiable disability”
increased epidemiological surveillance has merit but making FASD notifiable to
Medical Officers of Health through the Health Act not appropriate. Surveillance
has taken place through NZPSU 1999-2001 and FAS is on the NZ defects
monitoring programme collected for international data comparison
entitlements of health, education disability or other services is not linked to
disease or condition being notifiable
the variety of comorbidities and types of services FASD individuals are likely to
require is listed.
RESPONSE
BY PAEDIATRIC SOCIETY OF NZ:

The Paediatric Society recognises the FASD is a serious group of disorders, and
individuals with these conditions should receive equitable and timely access to
appropriate diagnosis, management, services and supports.

FASD is under-recognised and consequently under-reported in New Zealand. It is
potentially the most common cause of disability in New Zealand

The Paediatric Society supports increased data collection/epidemiological analysis
on a range of disabling and potentially preventable diseases and disorders, of
which FASD is one. Other examples include neural tube defects. Public health and
educational initiatives need to measured against reliable data on prevalence,
incidence, trends, degree of disability/morbidity, and access to services and
supports. A National Registry of FASD would not be supported by the Paediatric
Society unless part of a wider registry of disability and health status in children.
Privacy and consent issues and the use of such data collected would need careful
consideration. Ideally this would be an integrated package with the Immunisation
Registry project, the initial intention of which was that it would be the first
module of a comprehensive package. Mandatory reporting (as proposed by the
Fetal Alcohol Support Trust) of suspected FASD might have negative
consequences such as alienating families from services rather than increasing
access, and could lead to increases in under-reporting of alcohol use by mothers.

The Paediatric Society supports increased training and awareness of all
professionals in health, education, social services and justice regarding the
diagnosis and management of FASD. Particular emphasis should be placed on
increased training and resources around prevention of drinking in pregnancy.
Particular measures could include enhancing identification of problem drinkers by
midwives and specialists, involvement of multi-agencies in the prevention and
management of families in which this problem occurs, and the recognition of the
significant social and other problems associated with Alcohol abuse, such as
family violence and poverty.

The Paediatric Society supports increased funding to facilitate regional multidisciplinary diagnostic assessments for a range of disorders including Fetal
Alcohol Syndrome, Autism, ADHD, and specific learning disabilities. As is
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consistent with the recommendations in the Autism Guidelines (in draft), the
Paediatric Society recommends each DHB would be required to have or purchase
such services with the service specifications laid out to encourage excellence and
consistency.

The Paediatric Society does not support access to services and supports solely on
the basis of diagnosis of FASD. As most other services and supports are
predicated on the basis of degree of need not diagnostic label, to introduce such a
policy would cause inequity of access to those with other disabilities such as
Autism, ADHD, intellectual disability or cerebral palsy. However, where services
are accessed on the basis of a diagnostic label (some NASC – Needs Assessment
Support agencies - follow rigid inclusion and exclusion policies based on
diagnosis) Fetal Alcohol Syndrome and Alcohol Related Neurological Deficits
should be eligible conditions.

The Paediatric Society strongly advocates improved funding, increased
coordination and communication between service and support agencies, improved
targeting of resources, reduction of inequities, gaps, and waiting times in service
delivery to all those with disability. The Paediatric Society recognises that the
frustrations expressed in the Fetal Alcohol Support Trust submission about lack of
appropriate, timely, inclusive and coordinated services, are real and felt by carers,
and the professionals that support them, for a number of disabilities and disorders.

The Paediatric Society recognises that Fetal Alcohol syndrome is a discrete entity
with well established diagnostic criteria. Fetal alcohol effects/partial FAS/ARND
(Alcohol Related Neurological Deficits) occurs much more commonly, but is
difficult to precisely distinguish from other conditions with genetic or
environmental aetiology such as ADHD, intellectual disability etc. Often alcohol
and other toxin exposure (cigarettes, other drugs) in utero will coexist with other
mediators of poor long-term health, educational and social outcomes such as low
socioeconomic status, genetic predisposition to learning disability or ADHD, low
birth weight, prematurity, risk of deprivation, neglect or abuse, and maternal
physical or mental ill health. As such, effects are additive but difficult to attribute
to one factor solely. This implies services and supports in health, education, and
social services should be targeted at high-risk families/vulnerable infants on the
basis of a range of recognised risk factors, of which prenatal exposure to alcohol
is only one.

The Paediatric Society supports information campaigns and other public health
measures to increase public awareness of the dangers of alcohol in pregnancy,
including investigation of the efficacy of warning labels on alcoholic beverages,
restrictions to the availability of alcohol, and of other community and schoolbased initiatives.
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