SPEECH AT THE FEDERAL VIETNAMESE WOMEN'S ASSOCIATION
On 29 Mach 2006 in Adelaide , Australia
On behalf of The Vietnamese Parents with Disabled Children in NSW Support Group, we'd like to say good morning to all of you who are here today. Our thanks to the Federal Vietnamese Women's Association in general and the Vietnamese Women's Association in South Australia in particular, who gave us the opportunity to be here this afternoon to talk about our personal difficulties, which are also difficulties for those who care for disabled children. The paper will have three parts: difficulties that parents and the disabled encounter, why they are there, and suggestions for remedy. We can have discussion if there is time left at the end.
Introduction
We are parents caring for a disabled child, since she was born we have met a number of difficulties such as barrier of languages, lack of information, no guidance as to how to access services, no explanation about the entitlements accorded to carers and disabled people, lack of understanding in the community, and effects due to Vietnamese cultural traditions.
More than twenty-six years ago we have brought to life a bundle of joy. Like other parents we had our hopes but two of us were bewildered when a doctor diagnosed that our baby had Down syndrome. That is all he said and nothing else. It is only up to now when we work on issues of disability that we understand that it is not their specified field, so doctors had not much to advise us. Also they did not have to know everything. After two years caring for my baby, on our last meeting he comforted us through an interpreter that we should try to care for her, and she would lead a normal life when she reaches sixteen years old. We did hope, but usually those who do not know about the disability would give wrong advices, and a child's disability would seem like something mythical.
Caring for disabled children implies your share of worries is greater than in the case of normal children. Our baby was physically weak, could not suckle, displayed strange behaviours, could not talk, and had a string of illnesses. Out of our love for her we had to find a way, invent, and create methods to teach her although we did not know about her disability. There was no information, no one to guide us, we did not know how to teach her, where to start and how to proceed. She resisted our attempt to show her how to do things, and two of us also disagreed about the right way to raise our child. Everything was started from zero, we have gone through a lot of difficulties and she taught us a lesson, that is parents need to love each other, to work harmoniously with each other, then they would find a way to develop the child.
When our daughter attained twenty years of age, it meant we had asked ourselves questions of her disability for twenty years long. Many times we went to the library to search for Vietnamese information on Down syndrome but there was none. We did so because we believed that to raise a disabled child we needed to know well her disability. From that day The Vietnamese Parents with Disabled Children in NSW Support Group was formed. The Group's work is based on personal experiences; we operate on the basis those families supporting other families. We share with each other our own mistakes and successes, because we understand that today parents are ourselves years ago.
After more than eight years of work, the Support Group has 6 books published about the two most common disabilities in the community at the present; they are Autism and Down syndrome. These books are:
- Raising a Child with Autism
- Understanding Autism
- Asperger Syndrome and NLD
- Autism and Treatments.
- Down syndrome.
- Down syndrome: a Guide for Parents
and a magazine Parents with Disabled Children.
All these publications can now be found in libraries all over Australia where there are Vietnamese Communities. The purpose of this effort is to raise awareness in the Community about the issues of disability, to foster understanding for today and tomorrow. At the present The Support Group has a seventh book about Cerebral Palsy that we plan to have it published in the near future. Through six years of work, the Support Group maintains its character as an independent group of charity, relying on donations from parents and other benefactors only for its activities. It is due to this work that we are here today.
A. Difficulties.
1. The first difficulty is the language barrier. Some parents does not speak or understand the language English, cannot read the information and as a result, they does not know the disabled child's needs or carer's needs, do not know about services available or their entitlements in order to use. If parents know some English, it's mainly for their daily work, basic social exchanges, not well enough to be able to read medical texts in English full of technical terms, which allow them to understand clearly information on disabilities.
2. This will naturally lead to the consequence that due to their lack of understanding of disability, parents don't know their child's conditions, how to develop the child, to find services and the disabled child becomes disadvantaged. A good example is autistic children. They are diagnosed only by observing behaviours as there are no other ways to diagnose like blood test, X-ray etc. As parents caring for their child twenty-four hours a day, they can see the abnormalities and begin to sense that something is not right. The child delays to talk and shows strange manners. When they take the child for diagnosis, usually the doctor has no specified knowledge of this disability; the majority of family doctors have not. It sounds strange but that is the reality, the evidence is that on the website of the Autism Association in Great Britain, a specialist doctor has to list symptoms of autism and shows family doctors how to diagnose an autistic child.
A number parents tells us that as their doctors do not have the knowledge of autism, they advise parents to wait when parents report of symptoms they observe of their child. Parents will have doubts but they themselves have no knowledge of autism so they accept the advice and wait. When the child turns three or four years old, the strange characters becomes more clear. Parents cannot wait any longer and finally when they can persuade doctor that the child has problems to get a diagnosis of autism, a lot of precious time has been lost. With the diagnosis, the child is entitled to services but they can only use it a few months before reaching the limited age, or becomes older and will no longer be entitled to the services.
There are cases that we know in which parents listen to their doctor and wait, the child now is eighteen years old and still does not speak. Other cases are that parents have some knowledge of autism but are not sure, they suggest to the doctor but the doctor thumps the desk, asking “Who is doctor here?” How can parents be sure that their child has autism, are they doctors? Parents will go home, humiliated, keeping the child at home but full of doubts and unhappiness.
On the other hand, if having some understanding of autism parents should persuade their doctors, raises their concerns based on observations of their child. Parents are close to the child and can spot problems earlier. If necessary, parents should try to educate their doctors, because as a rule family doctors do not understand about autism. Or they should refer the child to see another doctor more specialized, to get the right diagnosis earlier, which will allow them to use services when the child is still at one or two years of age, giving the child time to develop. Leaving it too late, when parents realize the full scope of the disability, they will regret the time lost and will be full of remorse. But the one who is most disadvantaged is the disabled child.
When they feel that their child has problems, parent need to have an early diagnosis, a certification to put down their name for services. That certification is a proof that the child has special needs, and is qualified for help. It's only the first step to allow the child to put down its name on the waiting list which will take six to nine months for them to have services like speech therapy, occupational therapy. As the cut-off age is five years old, the longer parents wait to register their child, the shorter the time left for the child to use services.
3. The third difficulty is that even when diagnosis is made, parents still unaware or are not advised as to the benefits they and their child are entitled to, where to go, who to see, what to do to access the services. Parents tell us that case workers will give those forms to fill in, but no explanations. Parents kept that form for fifteen years, which means for fifteen years the child had no services that they were entitled to. Parents are to blame but the case workers are also at fault for not doing their jobs properly. Not knowing about disability and unable to speak English make things worse. Parents think simply that caring a disabled child is their own lot, their own responsibility, they have only their wits to rely on, not realising that the Government has programs to help. It means parents having a disabled child but themselves not knowing English also become disabled.
4. From here we come to the fourth factor which is culture, traditions. Vietnamese parents are reluctant to ask for services because by doing so means to announce publicly that they have a disabled child. To a number of people that makes them “lose faces”, it's a shame needed to be hidden. This thinking is observed not only with parents of low level of education, but those of better education also hide their children-pride and stubbornness delays disabled child’s chances to obtain the services.
When there is a definite diagnosis, the child's conditions are obvious and cannot be ignored any more, parents would either keep the children at home, not letting them to go to special school, not trying to find services or they know but don't use. They reason wrongly that the child cannot learn so they make no attempt to teach, accept passively that nothing can be done to improve the child, this is their karma and that is it. Now all they have to do is to bear it, feed and clothe the child but do and expect nothing else. In other words, culture and traditions could be used as an excuse to deny reality, a pretext to be relaxed, not trying to teach their child.
The Vietnamese culture also creates wrong beliefs. Instead using treatments that are scientifically tested and proved effective, parents spend time, efforts, money taking their children overseas to look for cures, unrealistic methods which promise to restore the children to normal. They believe in faith healing, magnetic healing or even acupuncture to cure Autism. So far not even one child has been cured or improved thanks to these means. When parents are exhausted, their finance depleted, the family returns to Australia and lets the child use services, it's already too late, a number of years have been wasted.
5. The next difficulty is when the parents do not support each other; disagree about the way to care for their child. It is already said above that it's difficult to diagnose Autism; this condition is vague and can be miss diagnosed. The mother has more opportunities to observe the child as she spends more time with the child and can see that there are problems. The father is proud, lack of knowledge, wants to deny so he believes in the family doctor. The latter said that slow to talk is no cause for worry, he himself only talked when he was four years old and yet when grown up he has a medical degree. When the symptoms are obvious, parents may disagree as to how to make him learn. Father may be stern and disciplinary, wants the child learn to do things for himself, but mother disagrees. Her reasons are that the child is disabled and should not be pushed too hard; he should be pitied and treated leniently.
The child is caught in the conflict and disadvantaged. He doesn't develop to the full extent of his abilities because parents cannot agree to have early treatment. One parent wants an intensive program of early intervention, the other thinks that it is not necessary. The child is not given due care to learn as much as they can.
6. The last obstacle is the fact that people in the community have no understanding about issues of disability; consequently show no sympathy or support. Disabled children are frequently ridiculed or assaulted. There are blames saying parents don't discipline their children but people don't understand that Autism or Down Syndrome are due to neurological defects which affect the child's mentality. It's this lack of understanding in the community that forces parents to keep their children at home and indirectly hinders their much needed development.
B. Reasons, how these difficulties arise.
1. The first reason is lack of information.
More than thirty years ago when the Vietnamese refugees started arriving in Australia, and more than twenty-six years ago when we still had black hair, good eyesight and had our first child who has Down syndrome, the settlement and integration of Vietnamese people was still new, there was no information of medical matters in Vietnamese.
When my daughter was a few year old, a case worker came to visit. She came a few times, asked if we needed any help but never explained what services available that would be useful for my daughter that we could apply and because we did not know English, had no knowledge of our child's conditions so we were bewildered and answered “No, we don't need”. To be honest, we didn't know what we need in order to ask for help. Partly we dared not bother the case worker and the system, didn't want to be indebted to her, to the Government because Australia was opening arms to receive us, give us a second chance in life, we didn't want to create bad impressions for the Vietnamese community, the Vietnamese people. We did not know that there were benefits and entitlements that our family was qualified to receive.
Looking back we feel sorry for ourselves and regrets for our daughter. If the case worker explained about services, how to access, we would be able to provide better care for our daughter, sooner and have it lasted longer. Certainly she would develop better than she does today. Twenty years later we had another case worker. She did her job conscientiously, she explained in detail the benefits and entitlements of carers and disabled peopled. But it is already too late, and her term of work lasted only six months.
Our experiences show that good case workers are few in numbers and it is very difficult to find them, as well as they rarely find stable works in the system. In the past six years, a number of parents who has come to the Support Group also mention that they do not have information, does not know where to go, whom to see, what to do when they give birth to a disabled child, or when they have diagnosis. Doctors only inform them that their children have problems and that's all. Case workers do home visits just for social purposes, and offer no explanations, like they have treated us years ago.
In the meantime, the government spends a lot of money to have information translated into community languages, but information is kept within the agencies, does not reach those who needs it, as such, how can parents learn of services in order to use them ? The Government thinks when they have information in Community languages, services, interpreters, bilingual worker, they have done their duties, but the government does not ask whether information reaches parents, and workers carry out their duties effectively.
Agencies like DoCS in charge of disabilities operate in an one-sided manner, DoCS does not ask why parents and others do not use services, use ethnic, bilingual interpreters that it provides or employs. Instead it uses the under usage as an excuse to dismiss workers, saying the community has no need for their services and let them go, cutting back its operation. In fact services are not used not because there are no disabled children in the Community, but more likely because parents do not know of such services in order to use them. Their decision to cut back services because not many people use them, serves to disadvantage further parents and disabled children.
2. The second reason for the difficulties that parents encounter is that bilingual worker in charge of disability have little or no knowledge, experiences of disabilities and does not discharge their duties properly. When parents come to agencies, which receive fundings from the Government to work for the Community, especially for disabled people, to ask for assistance, workers at the agencies just answer, 'I don't know', all they can do is just look blankly at parents and offering nothing else. These workers may not know where to find services, but at least they should direct parents to other places or people where they can be helped. In addition, ignorant workers may give wrong advices which make parents wasting their time, causing harmful effects to disabled children.
With no knowledge of disabilities, worker wouldn't know what services are best for a child with Down syndrome, or for an autistic child, in order to direct parents to the right places to access services for their children. If parents also did not know then it's a great misfortune for the child. At the moment, things still stay the same in the sense that workers only answer what you ask; they do not offer explanations or advices on their own initiatives. Parents at the present find themselves in the same situation as we did twenty six years ago, they do not know what to ask, but no questions means there is no need for the workers to answer or explain.
At least when working in the field of disabilities, they should know what the child and their family needs when learning of the conditions and offer advices, but they keep that to themselves. If told, parents would know how to apply for services, the disabled child develops and poses less a burden to society in a long run.
Let me give you another example of how workers treat their charges. Our daughter has home lessons with instructors from Living Skills, one hour per week. Some workers come late and leave early, instead of one hour a session lasts only thirty-five minutes. When we complain the instructors says they have taught everything, should they just sit there contemplating the blank walls for the rest of the session? But if you try you'll see there are plenty of things to teach, the curriculum has no limits in fact. The point is whether the workers do their job conscientiously or not. Parent with no English would find it hard to drive home their point, and using services does not guarantee that the disabled child would develop.
One more example that parents in the Group have is that workers abuses their positions. Share Care service has volunteers to take out children a few hours a day, allowing parents some time to relax. A bilingual worker at Share Care tells Vietnamese parents that they should show appreciation by giving presents to volunteers who care for their children. It results in parents not wanting to use Share Care service anymore and withdraw their children from the program, simply because they cannot afford to buy gifts. In this case workers create difficulties for parents and disabled children suffer.
C. Some suggestions and dream.
After more than thirty years of settlement in Australia, disability is a big issue for the Vietnamese, no longer small as thirty years ago. At that time, difficulties were:
- Barrier of languages
- Lack of services
- Lack of information.
- Lack of understanding
- Culture, traditional values, inferiority complex.
Thirty years later one would expect there are changes as the government has provided services, information, interpreters, bilingual workers, however obstacles are still there. They only morph into new shapes.
We dare to affirm that because after twenty-six years caring for a disabled child, more than six years working with the issues of disability, we still meet many parents who come to ask for help. They encounter the same difficulties as we did, despite of a number of services, a great deal of information, and many interpreters. Parents caring for disabled children can be likened to holding a red hot burning coal in their hand, anxious to have services right away to develop their child; instead they're forced to wait for diagnosis. While they are waiting there are no temporary services, but both workers and parents know that the sooner you develop a child the better things are in a long run.
There is no difference between what obstacles parent meet today and what we met thirty years ago, when we first came to this land. We hope that all of us, regardless you are the parent or worker in the Community you need to do some things to change the situations; we cannot let things stay unchanged like this. Within our limited scope of activity, as a charity independent group, aware of the difficulties and needs of parents with disabled children all over Australia, we have worked hard to bring solutions to barrier of languages, ignorance due to culture and traditions, lack of information by writing and publishing specific books about disabilities, magazines for parents with disabled children, in order to advise parents everywhere about the needs and benefits of disabled people, show them how to access and use services, how to raise their child. As you can see with Thao, if disabled people are supported their abilities would develop like everyone else.
There are external difficulties such as lack of information in Vietnamese, lack of services, which affect us to a certain extent; but there are also internal difficulties which are more personal like parent have no knowledge of disabilities, the community has little understanding of what parents have to face, workers don't do their jobs properly. The Support Group has addressed these concerns in the books and magazines they've published. Now we wish and believe that parents, the Vietnamese community and workers can bring about changes, help to make disabled people's lives better.
Thao has suffered for half a human life, and she is still suffering, but that's the story of twenty-six years ago. For disabled children who are born today, you and we have responsibility to alleviate the burden of their parents, because now we have experiences, having found out what the problems are. Understanding the problems implies we've gone halfway in solving them; the other halfway is to find solutions for them. That's where the Support Group contributes their humble effort.
Today's conference is a fortunate opportunity which allows all of us to recognise we are companions on the way to the same goal of bringing changes to situation. Our last word is that we need to do something, not letting today's parent’s regret as we have regrets for Thao. Once again, we would like to thank the Federal Vietnamese Women's Association and the Vietnamese Women's Association in South Australia for inviting us here to present our personal difficulties and dreams in raising a disabled child, which also are difficulties and dreams of other parents caring for disabled children.
Our best wishes for the success of the conference.
Thi Duyen Lam, OAM.
Van Dang Phan, OAM.
The co-ordinators of the Support Group