What we have done and what we can do
"Support and Training for Parents" - project summary
DSi has developed this project in partnership with the Asociacion Guatemalteca para el Sindrome de Down (AGSD), which will be responsible for implementing the project. The project will provide training and emotional support to parents of babies and young children with Down syndrome. This will enable them to ensure they can give the best possible support and care to their children during early development.
In Guatemala there is little support or information available for new parents of children with Down syndrome, and as a result they are often uncertain how to interact with and care for their child. The first few years of life are vital for any child and this stage is especially important for children with Down syndrome. Without support and training parents often lack the skills and information to support their child’s early development.
How will this project solve this problem
This project will provide emotional support and training to parents of young children with Down syndrome at regular meetings. The training will provide them with the information and skills they need to care for their child and support them to achieve their full potential.
Potential long term impact
Parents with the right skills and knowledge to support their young children with Down syndrome will be able to ensure they thrive and develop into happy, healthy adults who can fulfil their dreams for life.
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Life in Guatemala
In Guatemala City (the capital) the vast majority of women who give birth go to hospitals and if they do not have resources, national hospitals provide free service to the entire population. A high percentage of cases of Down syndrome are diagnosed at birth. The problem is that doctors often give this diagnosis in a very cold and alarmist way so they only tell the family all the negative aspects about Down syndrome. In the countryside, especially in rural areas, many women do not give birth in hospitals; midwives attend a large group of them. Although midwives are trained to care for births, they have no knowledge of Down syndrome so many children are not diagnosed until they visit the doctors in their community.
Due to negative medical diagnosis parents almost always see Down syndrome in a very pessimistic way, especially before finding professional help. The first days and months could be dramatic for parents and relatives. Fortunately, there is information available to families through the internet. It is easy and inexpensive for parents to have internet access in the capital city but usually it is expensive to find the right professionals. Unfortunately that does not happen in the country. The Guatemalan government does not offer any kind of help to families, only in the health area and does not see Down syndrome as a priority. It is not just characteristic of the current government; in fact it has never been for any other.
Acceptance of children with Down syndrome in families and wider society
At the beginning it is usually difficult for the family to accept their child with Down syndrome but if they find support and professional guidance it is a little easier. There are still cases where the father leaves the mother and family because of rejection of the child with Down syndrome. There are also few cases where they hide the person with Down syndrome. Ignorance is still very great in Guatemalan society and some family members are very helpful while others prefer to stay on the side lines. The advances of the society have been slow but over time there is more tolerance to the syndrome Down syndrome community. However, it is only the beginning, there is still a long way to go.
Due to ignorance many people with Down syndrome do not receive an early intervention program. There are few centres that offer this service and it is excessively expensive so there are families that decide not to attend. Something very important is that many parents believe that only professionals are responsible for the development of children with Down syndrome and we try to make them see that this is not the case. That the first commitment should be theirs to their children because otherwise the child's potential will not develop.
Guatemala is a country extremely behind in inclusion policies. The education system is completely traditional and rigid with people who have special educational needs. This happens in public schools and private schools. Given that school inclusion is a very popular topic worldwide, Guatemalan families have seen it as an option for their children. However, although the same government of Guatemala has promoted the right of all children to study and not prohibited the entry of children with disabilities, it has not given the right tools to teachers to work in classrooms. The vast majority of children who are in private schools and colleges are not receiving adequate learning. That is why we have many cases where children receive a sixth grade degree and do not even know how to read and write.
They are being promoted without having exceeded the basic areas of learning. In addition we have also received reports of discrimination from classmates. On the other hand, if the children did not receive an early intervention program, they are not prepared for inclusion either. Public and private schools do not have professionals who support both the teacher and the student for enriching learning for the child. Again there are very few private schools that offer real inclusion and at a very high cost, there are even cases where the parents pay for an additional teacher to attend to their child inside the school. If their family abandons a child or adult with Down syndrome, a judge decides which orphanage to send them to.
People with Down syndrome are not eligible for health insurance. Private health care services are too expensive for many people. Public health services offer low-cost care but care is poor. You have to make an appointment more than two months in advance and the day of the medical appointment you have to wait for several hours. The attitude of doctors at the time of diagnosis is usually cold and alarmist. Most only mention to parents all the negative aspects and sometimes even wrong ideas. In some cases they do not even refer families to the organizations that can support them, but not all of them.
Labour inclusion is a new experience that very few companies are experiencing. One of the best known is the McDonald's fast food restaurant. People with Down syndrome do not live outside the home of their parents or guardians. Independent living depends solely on whether the parents have developed the potential of their child or not. It is not common for adults with Down syndrome to live a life of independence although there are some cases. Although the future looks promising as more and more families with younger children are committed to their children. They do have the right to vote. There are laws to protect the rights of people with disabilities but many parents are not aware of them.