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Sub-process of integrated care for children with Down Syndrome


Laura Escaño Nuñez ,

Pilar Grados Garcia,

Carmen Diez Sáez,

Marian San Martín Viana,

Michelle Floyd Rebollo,

Lorea Aretxaga Bedialauneta,

Isabel Pizarro Portilla,

Gabriel Saitua Iturriaga


After the presentation by Osakidetza in 2013, about the Process to Integrated Children with Special Needs (PAINNE), The Down Syndrome Foundation and other developmental disabilities the Basque Country (FSDPV) is contacted with Team Project coordinator and began to collaborate with more than 200 professionals from different fields (health, education, social, etc.) in the revision of PAINNE, providing our views on the Integral Attention to families with children / as under six years with developmental disorders or at risk of suffering.

Parallel to our participation in the review of the innovative project, the idea to develop different threads that specifically collect action protocols to provide an adequate response to the needs of families with children / as with a particular disorder or diagnosis arises from the different areas involved.

Department of Health, Department of Education and FSDPV and more than 25 families: this way the Sub Down Syndrome, a document whose implementation had the opportunity to participate more than 15 professionals with different professional backgrounds and different fields of action arises children with Down Syndrome (DS).

The Document prepared consists of two distinct blocks. In the first block describes the characteristics of children / as with SD for the different areas of development, the intervals at which it is expected significant different developmental milestones and warning signs for each area are acquired; likewise specific guidelines for each area of intervention are collected from the general to the specific. Moreover, those actions aimed at improving the prevention and early detection of any alteration or illness related to Down syndrome are collected. This block has been prepared by different professionals and reviewed by some of the participating families.

In a second block those improvement areas identified by families for different environments are collected; so families describe their needs in relation to different moments that have lived, since even before the birth of their children / as.

One of the areas for improvement in virtually all families agree is related to the communication of the diagnosis, either during pregnancy or after the birth of their son / daughter. families demand that the news is communicated by a person with experience and sufficient information about Down syndrome; families need this professional, tactful move the diagnosis, understanding and empathy.

They also like that this information be submitted in writing to the family, as long as the case of guides or materials developed by experts and specially designed for parents of children / as with SD newborns / as.

From the Hospital it should always be referred families to a specialized Early Care Service.

In relation to the care provided to high, families would like to see both the / primary care pediatrician as / different specialists, could have access to more information on the SD and specific Health Program.

Families also demanded the systematization of coordination among all professionals who provide care to their children, from the Department of Health, from the Early Intervention Team Care and from the Education.

Families also believe that teachers serving their children from the Inclusive School, should be able to have access to information and resources to meet the needs of their children

We consider the document prepared as an innovative and functional tool that enables and facilitates comprehensive care to the needs of children / as with DS in early from the main environments in which it operates ages. We also believe that the project has provided an opportunity for professional’s cultures, languages and different approaches, to exchange views and build consensus and languages and produce a document that also has had the participation of families, putting in centre needs of people. It is also remarkable positive valuation of all persons who have participated in drafting the document, have made the experience.

How to Cite: Escaño Nuñez L, Grados Garcia P, Diez Sáez C, San Martín Viana M, Floyd Rebollo M, Aretxaga Bedialauneta L, et al.. Sub-process of integrated care for children with Down Syndrome. International Journal of Integrated Care. 2016;16(6):A247. DOI:
Published on 16 Dec 2016.


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