We made up questions to ask parents about their needs in each participating country. We also sent out a survey to people who work with people with Down syndrome. We asked about what people had already learnt, and what was important for them. We also asked about the resources people had for learning. The questions were about fundamental development areas throughout the life of people with Down syndrome: childhood, school age and adulthood.
Some of the most useful results in each stage are:
Health: In all stages they ask for more information regarding health, particularly at the time of birth. They would like medical attention to be more highly structured, although they consider the healthcare programmes for the population with Down syndrome to be very positive. It should be pointed out that such programmes are not adhered to systematically in all countries. They would also like to have more time for individual attention and more specialisation in Down syndrome on the part of the medical staff.
The specialities on which they have least information and for which they feel the greatest need are: ophthalmology, digestion, ear, nose and throat, dentistry and pneumology; followed by neurology, psychiatry, endocrinology and cardiology. In adult age they demand more information on premature ageing.
SOCIO-AFFECTIVE DEVELOPMENT
It is plain that the families feel the need for clear guidelines on the various stages of their children’s socio-affective development. They place a great deal of importance on the fact that the rest of the family, apart from the parents, has to be informed about Down syndrome. The families feel the need for guidelines on how to tell them. At all stages they need to have emotional support, both from the professionals and also from other families. Such support seems to be more adequate if given through associations rather than as a resource provided at the level of the state, and is particularly necessary in times of crisis. They believe it is essential to extend this support network to other members of the family, especially siblings.
AUTONOMY
The families place great importance on the development of autonomy from very early ages so that the person with Down syndrome can participate and play an active role, first in the dynamics of their own family and subsequently in their own social setting. They would like to have a better idea of how to develop this independence, particularly during the transition period from one stage to another. In the adult stages they call for more information on self-determination and social autonomy: leisure and free time, and how to use money and get themselves around.
EDUCATION
The families declare that on the whole they are fairly satisfied with the schooling received during the early years and consider it to be both necessary and important. The older the children are, the greater the number of discrepancies arises with regard to such satisfaction. They require more information on the way the education centre is organised, on the differences between education in special schools and the method of integration, and the degree of suitability of each of these in each stage of their life. They consider that the educational resources available need to be increased. Education for transition to adult life is given a lot of importance and more information is requested on this subject.
SOCIO-ECONOMIC RESOURCES
There is plainly a general level of dissatisfaction with regard to the number of resources available, since these are deemed to be insufficient, and in many cases, also their lack of accessibility. Attention is drawn to the lack of unification on this subject within the European Union. In Spain and Italy there is a greater satisfaction in comparison with other countries. In all participating countries great expectations concerning the law came out.
SOCIAL INVOLVEMENT
The social life of families is not perceived as being greatly affected, particularly during the early years, although they find it impossible to speak about the disability with ease and feel that their children with Down syndrome are judged differently from the rest. They demand more specific social, recreational and sports resources for people with disabilities. In general they would like their children to be accepted and integrated more easily in society. It is clear that there is a need to tear down many social stereotypes that have been built up with respect to Down syndrome and psychic disorders.
SEXUALITY
The families do not have sufficient information on how to tackle their child’s sexual education, particularly with reference to methodology, materials and orientation. They recognise the right of people with Down syndrome to enjoy their sexuality. A vast majority of the families consider that sexual education should be tackled by the parents working together with the professionals involved in educating their children.
TRAINING
Over half the families surveyed consider that they have not received sufficient information on specific training programmes for families of people with DS.
Next 3rd and 4th of September the PoD consortium will hold the fifth trans national meeting. This will be the last meeting of the PoD after the final closing.
