Nov. 07 : Independent Living and Social Inclusion

Josep Ruf
Independent Living Support Service Coordinatort «Me’n vaig a casa»
de la Fundació Catalana Síndrome de Down. Professor d’Educació Social a la Universitat de Barcelona.

Correspondence:
Sr. Josep Ruf
Fundació Catalana Síndrome de Down
Comte Borrell, 201-203, entresol
08029 Barcelona

Article received: 31.10.07

Abstract
After a few years of opportunities for independent living actually materializing for individuals with intellectual disabilities, the present situation may be analyzed to gauge the social access and community participation enjoyed by this group, as well as. Moreover, new prospects can now arise to serve as a focus for the individuals themselves, their families, their communities, professionals, organizations, and government bodies.

Keywords: Independent living. Quality of life. Social inclusion.

Nov. 07 : IX International Symposium on Down Syndrome.

IX International Symposium on Down Syndrome.
Into Old Age: Challenges and Hopes
Barcelona, 9 November 2007

Jul. 07' : Predictive Factors for the Development of Vertebral Deformities in Down’s Syndrome

Lluís Rosselló1, Francesc Pallisó1, Esther Siscart2, Tere Boronat2, Emma Puerto3, Rafel Llovet3.

1Servicio de Reumatología y Aparato Locomotor del Hospital
de Santa Maria de Lleida.
2Servicio de Medicina y Rehabilitación del Centro ACUDAM
de Mollerussa.
3Servicio de Medicina y Rehabilitación del Centro ASPROS de Sudanell.

Correspondence:
Dr Lluís Rosselló-Aubach
Servei de Reumatologia. Hospital de Santa Maria de Lleida.
Rovira Roure,44
25198. Lleida (Spain).
E-mail: lrosello@gss.scs.es

Article received: 3 Jul 07


Abstract
Background: There are many studies of spine pathology in people with Down Syndrome (DS), the majority of these focusing on atlantoaxial anomalies of the cervical column. There is, in contrast, much less information about other malformations such as scoliosis, kyphosis and lordosis, perhaps due to the fact that they are much less frequent pathologies with few physical and life-threatening repercussions. The aim of our study was to determine the prevalence of these spine-related malformations in a group of patients with DS and to look for factors that might predict the course of their development.
Patients and methods: We studied a total of 60 people with DS, 26 women (43.33) and 34 men (56.67%) with an average age of 39.8 ± 10.19 years, weight average of 65.4 ± 13.55 kg, and height average of 1.51 ± 0.4 metres. In all cases, we studied the different alterations of the spine following a well-established three-dimensional study protocol. We studied anthropometric data for these patients and also evaluated the other alterations which, due to their frequency, were thought to be potentially related to other spine-induced malformations: thyroidal pathologies, heart- and sight-related problems and alterations affecting the locomotive apparatus such as atlantoaxial instability, hyperlaxitude of the ligaments and deformation of the lower limbs.
Results: Forty-nine (81.67 %) of the patients had some spine-related malformation, 21 (35%) had malformations related with scoliosis, 19 (31.67%) with kyphosis, 30 (50%) with lumbar hyperlordosis, and 15 (25%) suffered from 2 or more of these malformations. Sex and height did not seem to be predictive factors, but age seemed related to lumbar lordosis, with this condition being more prevalent in younger patients (p < 0.01), while dorsal kyphosis was more prevalent in older patients (p < 0.001). On crossing spine-related malformations with other disorders, we noted that patients who suffered some form of visual pathology had a higher risk of suffering from scoliosis (p < 0.0009) and also other types of skeletal malformation (p < 0.02).
Conclusions: The number of patients with spine-related malformations was very high in the DS study group. With time, the curvatures change: in young people bone curvature predominantly affects the lumbar hyperlordosis, while in older patients it affects the dorsal kyphosis. Patients with visual disorders and other malformations of the skeleton have a greater risk of suffering scoliosis. We think that in this population group it is very important to prevent or to reduce the column deviations.
Key words: Down’s syndrome. Risk factors. Vertebral deformities.

Jul. 07 : Follow up of the children seen at the “Ramón Sardá” maternal hospital of Buenos Aires, Argentina

I. Schapira, N. Aspres, A. Ferrari, M. Rittler, G. Chernovesky, V. Feld, A.B. Álvarez Gardiol, R. Bedacarratz, A. Antoniutti, G. Gravnosky,
M. Piperno.
Grupo At.i.e.n.do: Atención Interdisciplinaria en Niños con Síndrome
de Down. Consultorio Externo de Pediatría. Hospital Materno Infantil
«Ramón Sardá» de Buenos Aires, Argentina.

Correspondence:
Dra. Schapira: itschapira@ciudad.com.ar
Dra. Ferrari: ama_ferrari@yahoo.com.ar

Article received: 01.06.07

Abstract
We show the results of the follow-up program for children with Down Syndrome, seeing by the ATIENDO group in the Maternal Hospital Ramón Sardá the Buenos Aires Argentina. We describe the program, the study population, associated illness, the results, and intervention approaches to promote integration of these children in the family and society.

Keywords: Down Syndrome. Interdisciplinary follow up.

Jul. 07' : On Reaching Adulthood

Beatriz Garvía Peñuelas
Psicóloga del Centre Mèdic Down. Coordinadora del Servicio de Atención Terapéutica (SAT) de la Fundació Catalana Síndrome de Down.

Correspondencia:
Sra. Beatriz Garvía
Fundació Catalana Síndrome de Down
c/ Comte Borrell, 201-203, entresòl
08029 Barcelona

Artículo recibido: 05.06.07

Abstract
To let the intellectually handicapped people to get into the society and become part of it, they need to have a life project, a concept of themselves, and a clear identity. It will make possible to accept the difficulties, to discover their potentials and reinforce their autoestime. Building the identity does not ends-up in the adolescence, it last for the whole life.
Adulthood has more external needs, more if the person is working in ordinary jobs, and it gets less internal support. In adulthood, the persons with intellectual handicaps still need knowing themselves, to be satisfied of what they are doing, to be able to chose, and feel socially valuated.

Keywords: Adulthood. Handicap. Identity building. Mental representation. Social integration.

Mar. 07' : Dr. Alari, a contributor to this publication ...

Dr. Alari, a contributor to this publication and collaborator of Centre Mèdic Down from its inception, is retiring. Dr. Alari has been kind enough to send in her thoughts about her time working for the Center. Exceptionally, they will be published here, as they are a convincing expression of the philosophy underlying the work of all those who help provide care for people with Down syndrome. Our publication of this article is a token of our gratitude.
The editorial board/The editors

Mar. 07' : Down Syndrome: An Assessment of Infant Psychomotor Development and Its Impact on Social and Familial Integration*

Iris Teresa Schapira, Alejandra María Ferrari, Norma Aspres,
Ana Belén Guardiol, Ana Inés Antoniutti, Roxana Bedacarratz
Hospital Materno Infantil «Ramón Sardá» Buenos Aires, Argentina.

Correspondence:
Dra. Schapira: itschapira@ciudad.com.ar
Dra. Ferrari: ama_ferrari@yahoo.com.ar

Article received: 13 November 06


Abstract:
There are currently no specific tests to observe and assess development in infants with Down syndrome (DS), so follow-up programs and performance assessments are required. Moreover, such programs encourage early and appropriate intervention to ensure psychomotor and cognitive development to the child's full potential, paving the way for integration at school, at work, in society and within the family.
This paper describes a longitudinal prospective study analysing and describing psychomotor and cognitive assessment in patients with DS in the first two years of life. The included subjects were infants with DS born in the Hospital Materno Infantil Ramón Sardá (HMIRS) as well as referrals from other institutions aged 1 day to 2 years. The subjects were evaluated over a 12-month period, with the Escala de Evaluación del Desarrollo Psicomotor (EEDP - Psychomotor Development Assessment Scale) by Rodríguez et al. and the Escala Argentina de Inteligencia Sensorio-Motriz (EAIS-Argentine Scale of Sensory-Motor Intelligence) by Oiberman et al. administered monthly.
This provided a mean age of acquisition of early motor milestones and a measurement of deviation from the population-wide mean in every area (language, motor skills, coordination, and social skills) with ensuing detection of the areas most compromised.
A survey assessed the emotional, economic and social impact these children had on their families, and whether this impact might influence their development.
Keywords: Assessment. Cognitive development. Down syndrome. Psychomotor development.

* Main topic of research: Implementation and evaluation of primary careprograms.