Documents handed out on Foetal Alcohol Syndrome:
Appendix 1:
Impact of Fetal Alcohol Syndrome on the Child
Dr C.M. Adnams, Developmental Service, University of Cape Town
Women who drink excessive amounts of alcohol whilst pregnant are at high risk for giving birth to children with birth defects. FAS is the defect resulting from alcohol injury to the unborn child.
Injuries caused by alcohol to the developing fetus may result in poor growth, distinct facial features, other physical defects and brain damage.
The type and extent of alcohol injury to the fetus is related to volume of alcohol consumed during pregnancy and period in pregnancy during which the mother drinks. These effects are permanent and there is no cure.
Alcohol damage before birth results in problems of intelligence, learning, social adaptation and behaviour. FAS is the most important preventable cause of intellectual disability worldwide.
There is poor ability in learning areas such as arithmetic, planning, memory and understanding abstract thinking. Language, drawing, copying, writing and shape recognition are especially affected. Later children with FAS develop behaviour problems and inappropriate socialising. Poor social judgement in adolescents and adults with FAS frequently causes problems with the law.
Younger children with FAS have behaviour problems such as impulsivity, hyperactivity, deficits in concentration and attention and disruption. Their difficulties are frequently unrecognised, with the result that their special learning needs may be unmet. Their formal education is very often a negative experience associated with low self esteem and school failure.
The majority of children with FAS have borderline/mild intellectual disability and many require placement in schools for learners with special educational needs (LSEN). Adults with mild intellectual disability have at best, capacity for sheltered or supervised employment.
Children with more severe intellectual disability require lifelong care and home supervision.
Adults with FAS have difficulty with employment, are dependent on others for income and daily living, and have a high prevalence of mental illness including depression and anxiety.
FAS affects children mothers and families. Alcohol abuse affects the mother's ability to care for children. There is a higher rate of foster and adoptive care amongst children with FAS.
The child with FAS requires special care to minimise his/her disabilities, placing additional demands on health, social and educational services.
Appendix 2:
THE 5 P's OF PREVENTION OF FAS (Ann Streissguth):
PUBLIC EDUCATION
· Pregnant mothers attending Antenatal Clinics
· Church marriage preparatory sessions
· Billboards and pamphlets
PROFESSIONAL TRAINING
· Appropriate health workers
· Community health workers (interchangeable with above)
· Teachers
PUBLIC POLICY
· Central and local government
· Political campaigning ticket (common to all parties)
· Alcoholic beverage labelling (cf. Cigarettes)
PROGRAMMES AND SERVICES
· Central and local government
· NGO's and CBO's
· Education, health and social services
· Church
· Media publicity - printed and electronic media
PARENT AND CITIZEN ACTIVISM
· Community forums
· Media publicity
· Advocacy groups
· Parent groups
· FAS association
Appendix 3:
Comments on behalf of the Wellington FAS Task Team
The Wellington FAS task team was initiated after a workshop in November 1997 held at Diemerstontein in Wellington. I was invited as representative for Social Development of the Winelands RDC.
My knowledge of FAS was almost non existent and my main aim of attending this workshop was to gain some knowledge of this unknown syndrome.
I became extremely interested in this phenomenon, since suddenly a lot of things became much clearer to myself. I had been schooling in Wellington for my primary school years and very often the children from the rural wine farms, were seen to be much slower in learning than the so-called town children. On weekends when the farm people were trucked in to do their weekly shopping, they were also shopping first at the local bars. It also came to light that at that stage at certain farms, wine was given in the mornings and after work as compensation for a job done. On asking my father about this practise, I was told at a very young age that the tot system was part of the remuneration of these workers. That was my first learning of the "Dop-system" a system which was meant to enslave the indigenous people and keep them inebriated so as to continue with their slave labour.
The sad side of this whole story is that so many people want us to deny the fact that there was and still is a dop-system. A system aimed at dehumanising the farm labourers, a system which is rejected by any person with a sense of human rights and human value.
The Dop-system does everything that is negative to a human being.... it strips a person of acceptable norms and values, self-esteem and to attain his full potential.....and it enslaves the fixture generations by having children born with FAS something that can be prevented if only we did not have the history of this despicable system if only mothers did not consume alcohol during pregnancy.
The aim of the Wellington FAS team is to try and implement a programme, that will address the high incidence of FAS and where it is reduced to I% in 8 years time, but to achieve this we need to change the social behaviour of communities. We need to implement lifeskills training, but first of all we need to address the moral decline which is evident in all our communities. We have to go back to our basic family value system and we need the faith-based sector to help us in this endeavour. The dop-system where it is in existence need to be eradicated and the shebeens need be controlled. We have to start training people to take charge of their own lives mid to really concentrate on people-centred development and above all the wine industry needs to take responsibility for the damage that their product does to the unborn child, such as labeling bottles as we do cigarettes.
High ideals but achievable with the necessary resources. One of our main concerns was that the children who formed part of the research were labeled as FAS or ARBD and that was the end for them there was no talk of an intention to help these unfortunate children. The research left us with FAS based on the medical model, but it does not do anything about the behavioural changes that needs to be addressed.
We got a highly skilled team together, which included a school psychologist, midwife, school nurse, health inspector, school principals amongst others and we started with great enthusiasm. All of these unfortunately very busy people with their own time constraints and that was problem number one.
We were promised that the KWV Wine Trust would fund our project but apart from R7 500 for our launch we had no other resources. Instead the Wine Trust is said to rather fund people who want to start a wine farm and had no interest in FAS. This was a great problem, because we wrote endless letters to the local farmers and business people, but we did not even rate a reply.
We were unsuccessful in getting any interest from the Wellington farming community to be part of this task team, nor could we succeed in getting any of the local farm labourers on our team. The problem of getting the community to own this project was very great indeed and then the volunteers started to stay away, because the team only consisted of volunteers.
The fieldworker employed by FARR was there helping to interview the families of the second group of children tested and not as we thought going to be part of civil society’s response to addressing the problem of FAS and ARBD, this was another major constraint and we had to rely on the goodwill of the volunteers to use their own transport, phone and fax facilities.
As a member of the PDC I felt it my duty to get FAS written into the PDC document "Shaping the Cape" and then to my great relief in stepped the Regional Director of the West Coast Winelands Health Region and we suddenly had more capacity such as photo-copy and fax facilities and we did not have to rely so much on the resources of our volunteers. A sector which we had real difficulty in getting involved was that of Social Work, but because meetings now moved to working hours, they started to get involved.
We had a launch on Freedom Day 1999, which was a great success, except for getting the people from the farms to this event. We hand delivered letters to the farmers, who promised us that they would bring the people in to town5 but this did not materialise.
We have three focus areas, health promotion, rehabilitation and curative and we have three sub committees who work at these different levels. In health promotion, our aim is to piggy back on health committees which is in the process of being set up by a sister who will do a TB project with SIDA, where we will then go mid do awareness programmes and lifeskills training, we also hope to get the Sports and Recreation department involved to do sports training and development on farms.
In the rehabilitation group, we have already developed a referral system, whereby by an already diagnosed child can be referred to the appropriate line function department. We have identified the different levels of intervention, but one of our main frustrations here is the lack of a training centre for these children identified with FAS, who are not educable, but who are trainable. We have one facility in Paarl for the mentally handicapped, but with our high incidence of FAS and the high amount of children affected we need some other training facility, preferably in Wellington and for this we need to have the Education Department's involvement in our project.
It was then decided to work in a specific demographic area and to adopt an holistic programme. We have with the help of the Social Workers at the Murray Children's Home identified an area, where we would start a stimulation group for pre-school children. This area which is locally known as the Horseshoe (where we have a number of wine farms) is an area where the 4th year Social Work students from the Huguenot College has an existing community project, and we will use them to piggy back our FAS project, we also aim to utilise the people from the AMOS project, which will work with the farm owner and try to change his attitude. We have already identified our time frames and hope to start the stimulation group as from this month on a weekly basis, bussing the children to the Murray Children's Home. We will also start with parenting skills on a monthly basis and evaluate our programme by June to see how we have to make adjustments.
On the curative side, we are working to identity the mothers, who are drinking during pregnancy using the TWEAK test, this is a line function duty and is executed at the local clinics and Paarl and Paarl East Hospitals.
My vision for this project is to get proper funding so as to be able to train lay counselor developers, who can work in these communities on a full time basis.
Whether I fulfil all my objectives remain to be seen, but I hope that when I leave this project that the next person will not have the frustrations and constraints that I have battled through and is still battling through, that we will have sorted out the maize of red tape and sensitivities. I hope to transfer all the skills I have gained to a person who has more time on hand for this project, because it is my firm belief that we need to have people employed to address this problem, we need finances and infrastructural support to make this project really work. But above all we need commitment from these members present to put FAS as high as possible on government's agenda so as to gain the potential lost generation due to FAS.
Appendix 4:
Briefing to the Parliamentary Portfolio Committee on Health:
Foetal Alcohol Syndrome and the experience of the DOPSTOP Project
Background to the Project
In mid 1995, the Health Department of the Stellenbosch division of the then Cape Metropolitan Council began a reorganisation of its staff on the mobile clinics serving farms in the area. As a result, many of the nurses who joined the mobile clinics saw for the first time the impact of alcohol on the health of the men, women and children to whom they were providing health care. Malnutrition, TB, child abuse and other adverse childhood outcomes, including foetal alcohol syndrome, were common amongst families where alcohol abuse was rife. They realised that the DOP system was ongoing on some farms and that treating patients for TB who then went back to farms that continued to provide alcohol dependent workers with dop was not ethical.
As a result of the nurses initiative, an informal network of interested service providers, University public health staff, rural development NGOs and interested individuals was established in 1995 to explore how this problem could be tackled effectively. The project has subsequently been formalised as a non-profit NGO and was officially launched in June 1997 as the DOPSTOP. The aims of the DOPSTOP are to end the Dop system, prevent alcohol abuse and reduce excessive alcohol consumption in farms in the region, by providing social alternatives and raising awareness of the hazards associated with alcohol abuse.
The Objectives of the DOPSTOP Project |
Approach
The project is multidisciplinary in approach and draws together a diversity of different types of organisations and individuals. It includes participation from two University Public Health Departments (UWC and UCT), rural NGO's (Centre for Rural Legal Studies, Rural Health and Education Trust), formerly Avalon Treatment Centre, the Stellenbosch Agricultural Association and the Winelands District Council Health Department as core.
We adopt a broad approach to the problem of alcohol abuse and its consequences, aiming to address the overall health and development needs of farming communities, within a health promotion framework. Foetal alcohol syndrome is one of the many problems we aim to tackle in this framework. We work collaboratively with other projects in the region, such as Women on Farms, and the Foundation for Alcohol Related Research Project on FAS in Wellington. Financial support has been from the Department of Social Services (Poverty Relief Fund) and the Health Systems Trust. In addition, we have worked closely with Regional and Provincial Health Department staff in developing the project.
We see our project as a pilot which should be extended to other areas, where the difficulties are even greater than Stellenbosch.
What are DOPSTOP's activities?
DOPSTOP embraces four broad areas of work, adopting a comprehensive health promotion approach to the question of alcohol abuse. These include:
Education and Training for farm residents and management with a view to primary, secondary (early detection) and tertiary (support groups) prevention, as well as training for health service providers and other caregivers.
Facilitating provision of clinical and counselling services for alcohol addicted individuals as well as rehabilitation services for those suffering adverse consequences.
Research, both quantitative and qualitative (using anthropologic and ethnographic approaches) to inform interventions and provide baseline indicators for evaluation. (Some of these data have been published - see annexures).
Advocacy to promote healthy policies and practices, raise community awareness and mobilise support. (see newspaper clippings).
This set of activities focuses primarily on developing on community-based interventions working with farm residents and management to achieve shared goals. Use of peer experience as key vehicles for behaviour change amongst both farmers and farm workers, and of using both group and individual approaches, are critical.
Foetal Alcohol syndrome
Foetal alcohol syndrome has emerged as one of the key problem areas we are faced with.
In relation to FAS, DOPSTOP's work has entailed the following:
We conducted a large health survey on 56 farms in the region in 1998. This survey will serve as our baseline for evaluating future interventions. In this survey, we looked broadly at the health of adults, children and geriatrics. However, because of our concern for FAS, we screened 191 farm workers' children between the age of 5 and 8. Of the 80 children who were underweight, stunted or had low head circumference, we found that 11 children demonstrated features of FAS, suggesting an overall prevalence of about 6% (11 out of a total of 191 children examined). This is a very high prevalence and is similar to the findings of the FARR study in Wellington. In addition to the 11 children with clear evidence of FAS, there are many more with "FAS features" and we suspect that the problem is much bigger than just those children who are labelled as FAS.
Having identified these children with FAS, we are now aiming to develop support structures for families, either in groups or in families. As one of our current projects, we intend developing a package for use by health care providers to support families that could be used in other districts. Some of the case vignettes presented below are from our work on these farms.
The third area of work is with teachers in schools around FAS and alcohol problems amongst young children! It is not unusual to find children as young as 8 coming to school drunk, as a result of massive family disruption due to alcohol. Teachers approach DOPSTOP for assistance in dealing with some of these problems.
We present two stories of women on farms where we have been working to illustrate some of the problems faced on farms (we have changed the names of the women to protect their identity).
The difficulties of family with a FAS child - the story of Sanna |
Susie and her Children
Problem Areas
Schools:
There are many FAS children in schools, but these children are in need of special care and attention. Current overcrowding in the schools is not very favourable to meeting their needs.
The teachers in many cases, although well intentioned, are not trained to work with FAS children with special needs
Services:
Adults (including pregnant women) in need of rehabilitation for substance abuse have very poor services available in rural areas.
Even the urban centres dealing with alcohol abuse (e.g. Avalon) have been closed by the impact of budget cuts. Existing services (both specific to alcohol and general health care) have been scaled back on farms.
Current services (health and welfare) are understaffed and have long waiting lists.
Lessons
Prevention Programmes:
Intervention programmes must involve the whole community, not only pregnant women. Women who drink in pregnancy need support from their family members and friends. Women do not drink in isolation. On the farms, the social context is particularly important because of the culture of drinking and the legacy of the DOP system, although this may not be same elsewhere in urban areas.
We must recognise that alcohol is part of a social environment. For many dependent parents, one cannot simply take away alcohol without providing alternatives, developing life-skills, social recreation, etc. On a number of farms, there is clearly a need for social infrastructure to be improved. If we are to prevent FAS in children, the preventive strategies need to take account of the social factors limiting mother's behaviours.
Prevention must take both a short-term and a long-term perspective. Children grow up in an environment where alcohol, violence and poor inter-personal skills are the norm. Prevention aimed at children has to take on this environment. That is why we are aiming at youth, at schools, as well as support for families who already have the problem.
Peer education is very important. Farm workers who have succeeded in stopping drinking will be very important as educators of other farm workers. They are the key to success of our project’s development.
In the farm context, all stakeholder are important, including farmers, farm workers, shebeen owners, unions, etc. All stakeholders need to be drawn in.
The support of government has been critical in helping community-based organisations to find the space to undertake programmes. Our support from the Departments of Health and Social Services have been very important, not only material (money) but in their political support as well.