аЯрЁБс>ўџ OQўџџџPџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџџьЅС5@ јП–&bjbjЯ2Я2 *<­X­Xќ™џџџџџџˆ\\\\\\\pд д д 8 $0 ,p9 Цh ~ :И И И ŸHчИКККККК$џ!RQ$>о\A^Ÿо\\И И ‰ѓЂЂЂ\И \И ИЂИЂрЂ‚т|Є\\LИ \ ch—“Фд ІF tD 09 6%ь %,Lpp\\\\%\L(иыšЂ…|ооppd д Œppд THE PAEDIATRIC SOCIETY OF NEW ZEALAND Secretariat: Email: Denise Tringham P O Box 22 234 Wellington Tel: (04) 938 4827 Fax: (04) 976 4827  HYPERLINK "mailto:psnz@paradise.net.nz" 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 Response by Ministry of Health summarised: 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 multi-disciplinary diagnostic assessments for a range of disorders including Fetal Alcohol Syndrome, Autism, ADHD, and specific learning disabilities. As is 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 school-based initiatives.  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Submissions

The Paediatric Society believes all children and youth should, by right, attain optimal physical, mental and social health and wellbeing.  By working as a coordinated national network of health professionals the Society dedicates its efforts and resources to making official submissions to both Government and Non-Government organisations on issues that will impact on the health and wellbeing of children and young people.

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