Northland Caregivers Ask For More Help On FASD
February 16, 2016
Northland Caregivers Ask For More Help On Fetal Alcohol Spectrum Disorder
Northland families and caregivers struggling to cope with young people affected by Fetal Alcohol Spectrum Disorder (FASD) gathered this week at Barge Showgrounds in Whangarei to learn more about the disorder, share their experiences, and call for help.
FASD refers to the range of disabilities that can occur when a developing fetus is exposed to alcohol during pregnancy. Over 200 people attended workshops in Whangarei this week to learn more about the special needs of young people with FASD from both a clinical and caregiver perspective.
At day two of the hui, many caregivers expressed frustration that FASD is not recognised by itself as a disability eligible for financial support. The hui heard that even when FASD is professionally diagnosed – which it seldom is – typically a young person would have to be also diagnosed with another intellectual disability to be eligible for disability-related support. Experts and caregivers at the hui also voiced concerns that many agencies they deal with haven’t been trained in how to respond to young people they suspect have FASD.
The government’s Taking Action on Fetal Alcohol Spectrum Disorder 2016-2019 Action Plan was released in August 2016. Associate Health Minister Peter Dunne called the action plan “NZ’s first attempt to take a strategic and coordinated approach to FASD” and said it is a “living document” which will be updated as new priorities and evidence emerge.
Day One of the hui was a professional development workshop put on by Northland DHB in association with Alcohol Healthwatch informing health practitioners about intervention practice around vulnerable populations where FASD may be a factor.
Day Two of the hui was about whānau networking and supporting one another as caring for a child with FASD can be a challenging and lonely role.
FASD Centre Aotearoa clinical director Dr Valerie McGinn, who has had disabled children within her own family, talked on both days of the hui, educating those in attendance about how alcohol is a teratogen, affecting fetal development in the womb, and discussed research into NZ’s particularly high rates of women drinking while pregnant, causing up to 3000 children a year to be born with FASD.
Consuming alcohol during pregnancy can result in brain damage, as well as a range of other health and behavioural issues that may persist for the life of the child. Many of these children need lifetime support just to cope with everyday tasks.
Hui Organiser and Northland DHB health promotion advisor Dave Hookway noted services to assess children suspected of having FASD have increased in Northland in recent years. If a diagnosis by a paediatrician is not clear, children will be referred to the multidisciplinary Complex Development Assessment Clinic.
A diagnosis is not always possible at the first assessment and can wait on a variety of matters including but not limited to – gathering more information (e.g. from Ministry of Education if they are involved), investigations, the passage of time (i.e. following progress of the child clinically).
Caregivers expressed on Tuesday that they feel a diagnosis of FASD is important because it means their own approach to dealing with the learning and behavioural issues of the child, and the approach of service providers, will be quite different.
Northland DHB Child Health Centre clinical team leader Karen Faber said while FASD on its own is not recognised as a disability eligible for financial support (unless the child is also diagnosed with an intellectual disability) “FASD diagnostic teams are currently absorbing comprehensive assessments within their existing funding allocations.”
This has placed increased pressure on service delivery by Child Health Services and the Child and Adolescent Mental Health and Addiction Service Te Roopu Kimiora.
“FASD diagnostic services are hopeful that an outcome from the FASD Action Plan will be that FASD is recognised as a disability enabling parents/caregivers to be eligible for financial support,” Karen said. “Also FASD diagnostic services are hopeful that extra funding is provided for diagnostic and intervention services.”
On day two of the hui, speaker Paul Gyde spoke of his experience as a parent to a child with FASD. “We were continually frustrated that while our son showed he’d learned something one day, the next day we would be back to square one and have to teach him all over again,” Paul said. “In the end, we realised that we had to adapt our behaviours as parents, since our son was not able to learn from the consequences of his actions. Practically it meant starting from the strengths our son had and building from there.”
Many of those caring for young people with FASD spoke about the consequences of their young people being suggestible due to FASD including crime and substance abuse. “Our son Jakob is alert, witty, creative and loveable some days; other days he is abusive, self-harming, wandering the streets and at high risk of crime,” chair of the FASD Care Action Network Claire Gyde said.
More often than not, it is the police who are called to intervene because other agencies aren’t available, some caregivers said. “We lived in a state of anxious high alert as we didn’t know what was going to happen each day with our son,” Claire said.
Many caregivers spoke about their young people being excluded from the education system, often because the school does not understand the persistent nature of the brain damage that they live with. “These children might be 13 years of age on the outside, but practically they could be equivalent to much younger child in terms of functioning”, Dave Hookway said.
Parents or caregivers of children suspected of having FASD are encouraged to discuss this possibility with their GP, public health nurse or teacher who should then make a referral for assessment.
There is light at the end of the tunnel for those caring for FASD kids like their son, Paul and Claire said. “They will always need help throughout their life, but can learn to participate in society and lead more fulfilling lives if given such support.”
More information about FASD support: www.fasd-can.org.nz
To read the FASD Action Plan:
Information about FASD-related services in Northland contact
Health Promotion Advisor Dave Hookway firstname.lastname@example.org