Nouvelles thérapies pour les maladies osseuses de l'enfant [New therapies for children affected by bone diseases].

Considerable progress has been achieved in recent years in treating children affected by bone diseases. Advances in the understanding of the molecular pathophysiology of genetic bone diseases have led to the development of enzyme replacement therapies for various lysosomal storage diseases, following the breakthrough initiated in treating Gaucher disease. Clinical studies are underway with tailored molecules correcting bone fragility and alleviating chronic bone pain and other manifestations of hypophosphatasia, or promoting growth of long bones in achondroplasia patients. We further report our very encouraging experience with intravenous bisphosphonate treatment in children suffering from secondary osteopenia and the high prevalence of calcium and vitamin D deficits in these severely disabled children.

Family Support Subsidy and Children at Home Program SFY 2015, October 30, 2015

The Family Support Subsidy (FSS) program provides a monthly payment to help families with the cost of raising a child with a developmental disability. Parents of children with disabilities were very active in getting state and federal policy makers to look at how they could divert some of the funds going to institutional care. Families with severely disabled children wanted to raise their children at home but were met with a lot of resistance and policy barriers when they tried to get home-based support.

Changing teachers´ practices in regular schools enrolling children with visual impairment

The number of persons with visual impairment in Tanzania is estimated to over 1.6 million. About half a million of these persons are children aged 7-13. Only about 1% of these children are enrolled in schools. The special schools and units are too few and in most cases they are far away from the children’s homes. More and more regular schools are enrolling children with visual impairment, but the schools lack financial resources, tactile teaching materials and trained special education teachers. Children with visual impairment enrolled in regular schools seldom get enough support and often fail in examinations. The general aim of this study was to contribute to increased knowledge and understanding about how teachers can change their teaching practices and thus facilitate the learning of children with visual impairment included in regular classrooms as they participate in an action research project. The project was conducted in a primary school in a poor rural region with a high frequency of blindness and visual impairment. The school was poorly resourced and the average number of pupils per class was 90. The teachers who participated in the collaborative action research project were the 14 teachers who taught blind or visually impaired pupils in grades 4 and 6, in total 6 pupils. The action research project was conducted during a period of 6 months and was carried out in five cycles. The teachers were actively involved in all the project activities; identifying challenges, planning solutions, producing teaching materials, reflecting on outcomes, collaborating and evaluating. Empirical data was collected with questionnaires, interviews, observations and focus group discussions. The findings of the study show that the teachers managed to change their teaching practices through systematic reflection, analysis and collaboration. The teachers produced a variety of tactile teaching materials, which facilitated the learning of the pupils with visual impairment. The pupils learned better and felt more included in the regular classes. The teachers gained new knowledge and skills. They grew professionally and started to collaborate with each other. The study contributes to new knowledge of how collaborative action research can be conducted in the area of special education in a Tanzanian school context. The study has also relevance to the planning of school-based professional development programs and teacher education programs in Tanzania and in other low-income countries. The results also point at strategies which can promote inclusion of children with disabilities in regular schools.

Making the transition from secondary to post-secondary education : a retrospective study of students with learning disabilities

The purpose of this study was to investigate what students with Learning Disabilities perceive are the personal characteristics they possess and services they require to assist them to complete secondary school and to continue their education in a postsecondary setting. Twenty-one students (12 female and 9 male) participated in the study which consisted of an interview and completion of a questionnaire. The central findings were as follows: 1) the participants perceived that personal characteristics were important in secondary school and still remain of importance at th~ postsecondary level; 2) Many of the typical accommodations and services supposed to be provided in secondary schools were not provided to the participants in this study; 3) the participants believed that they had more academic than social problems. Recommendations for future research in this field are based on findings related to the transition of LD students from secondary school to postsecondary education.

Problem children with and without communication delays : the changes in their parents' report of challenging behaviour, parental hassles and family conflict over a two -year period

The goal of this study was to examine the change, over a two year period, in mothers' reports of children's challenging behaviour and family conflict as they relate to change in parenting hassles (stress) among families who have preschool children with and without communication delays. Forty-four parent-child dyads participated in this Family Resource Project study that was funded by the Canadian Language and Literacy Research Network. Thirty-one ofthese families had preschool children with communication delays and 13 children were identified as not having communication delays. Child behaviour was evaluated using the Oppositional Subscale and ADHD Index of the Conners Parent Rating Scale (CPRS-R:S), the Conflict Subscale ofthe Family Environment Scale was used to examine family conflict, and the Parent Hassles Scale was used to examine parental stress. Results showed that change in mothers' daily hassles was influenced by change in their preschool children's ADHD behaviour and change in family conflict. Change in child oppositional behaviour did not predict change in mothers' hassles scores.

The relationship between working alliance and treatment outcomes in remedial instruction for older dyslexic children

Research in psychotherapy has demonstrated that a positive working alliance between therapist and client leads to positive treatment outcomes. Though its focus is in the area of psychotherapy, the concept of working alliance holds significant value to the area of education. Current applications of the theory in educational settings have looked at relationships between teacher and students in the broad context of classroom interaction and found significant promise. The present study investigates the application of the theory of working alliance in a sample of older reading disabled children. The study examined the psychometric properties of the Reading Alliance Scale for Children (RASC) and for Teachers (RAST) in relation to student reading ability and motivation. A sample of 254 (66.1 % male, 33.9% female) grade 6-8 students (mean age 12.7 years) were enrolled in a remedial reading program for reading disabled children. The average standard score across multiple reading measures was more than 1 SD below age-level expectations. Students responded to measures of reading achievement and motivation at pretest, after 70 hours (post 70) of remediation and at the end of the program (post 125). All participants completed measures on the working alliance relationship at post 70 and post 125. Results showed that teacher reports were most predictive of outcome compared to student reports of the working alliance relationship. Working alliance was correlated with posttest reading ability and motivation. Male students and Black students obtained the weakest working alliance reports from their teacher. Overall, findings support the view that students' relationships with teachers provide an important component of success in the classroom.

A utilização da biblioterapia em contexto de biblioteca escolar no apoio a crianças com perturbações físicas e emocionais : criação de um modelo aplicacional

Este trabalho de investigação resulta de uma preocupação pedagógica que nos acompanha, a de proporcionar aos alunos ambientes propiciadores de experiências vicárias, promotoras da autonomia pessoal, apoiadas na leitura e no diálogo interpretativo. Parte-se de uma exaustiva revisão de literatura sobre a história da Biblioterapia, a evolução do conceito e as suas potencialidades na promoção da inteligência emocional de crianças saudáveis e/ou portadoras de perturbações físicas ou emocionais e no desenvolvimento de mecanismos de coping2 e empowerment3 a mobilizar no enfrentamento das suas narrativas problemáticas, aproveitando os recursos biblioteconómicos, o espaço físico e o ambiente informal de aprendizagem na Biblioteca Escolar. A investigação realizada levou-nos a uma análise da arquitetura de diversos modelos de aplicação e, subsequentemente, a uma proposta de um modelo aplicacional, eclético, de matriz educacional, para implementação de programas de intervenção biblioterapêutica, em contexto de Biblioteca Escolar, explicativo das fases que concorrem para a sua corporeidade.

The children that time forgot: Reframing housing standards to incorporate children's needs

This paper presents the findings from a recent study funded by the Joseph Rowntree Foundation examining the housing and neighbourhood needs of 44 visually impaired children. Our research found that disabled people’s needs have been too narrowly based on ‘accessibility’ criteria, which do not take into account the health and safety issues so important for children. Indeed, the home environment is the main site of accidental death or injury for young children under 4 years, and children from low income families are particularly susceptible to burns, scalds, falls, swallowing foreign objects or poisonous substances within it (CRDU 1994). As disabled children are statistically more likely to be in low income families, this places them at high risk. If ‘accessibility’ is to be reconceived as design for usability throughout the lifecourse, this challenges us to move beyond the pragmatic but limited application of design prescriptions for disabled people as a separate and adult group, and to re-think all of the dimensions of the housing quality framework in the light of this expanded approach.

Investigating orthographic and semantic aspects of word learning in poor comprehenders

This study compared orthographic and semantic aspects of word learning in children who differed in reading comprehension skill. Poor comprehenders and controls matched for age (9-10 years), nonverbal ability and decoding skill were trained to pronounce 20 visually presented nonwords, 10 in a consistent way and 10 in an inconsistent way. They then had an opportunity to infer the meanings of the new words from story context. Orthographic learning was measured in three ways: the number of trials taken to learn to pronounce nonwords correctly, orthographic choice and spelling. Across all measures, consistent items were easier than inconsistent items and poor comprehenders did not differ from control children. Semantic learning was assessed on three occasions, using a nonword-picture matching task. While poor comprehenders showed equivalent semantic learning to controls immediately after exposure to nonword meaning, this knowledge was not well retained over time. Results are discussed in terms of the language and reading skills of poor comprehenders and in relation to current models of reading development.

Reasonable adjustments for disabled pupils: what support do parents want for their child?

Schools in England (as elsewhere in Europe) have a duty to promote equality for disabled people and make reasonable adjustments for disabled children. There is, however, a degree of uncertainty about how well-placed parents are addressed to use the legislation to ensure their child’s needs. This paper presents data drawn from a national questionnaire designed for schools to use to identify their disabled pupils and examines, in detail, parental responses to a question on the kinds of support their child finds helpful in offsetting any difficulties they experience. It illustrates the complex and varied nature of the ‘reasonable adjustments’ that are required and an overriding sense that need to be underpinned by the values of a responsive child-centred approach, one that recognises that parents’ knowledge and understanding of their child are important. Schools need to have in place the two-way communication process that supports them in ‘knowing’ about the visible and invisible challenges that pupils with difficulties and disabilities face in participating in school life.

Disability data collection for children's services

Schools need to identify disabled pupils in accordance with their Disability Equality Duty. This research assisted in the development of suitable tools to allow them to identify disabled children in accordance with the definition set out in the Disability Discrimination Act (DDA) by surveying parents and, via the use of purpose-designed activities, the children themselves.

O brincar e a criança com deficiência física na educação infantil : o que pensam as crianças e suas professoras

The present study had the purpose of examining the disabled children s way of playing on everyday situations in the CMEIs (acronym in Portuguese for City s Early Childhood Education Center ) of Natal/RN, by watching and listening to three children and their teachers, trying to understand how the games existent in these contexts involve the different subjects of the learning process, and which contributions emerge for a valuable pedagogic work, capable of providing the children s inclusion in the Early Childhood Education. This qualitative investigation was built as a case study, collecting data through watching and interviews. Throughout the observations, it was indispensable to look into the different contexts of the school routine, to capture and analyze events that could answer to what was being studied. The accessibility conditions of the school spaces were also observed. The interviews made possible to extract from the subjects what they think and how they perceive themselves when playing. The acquired data were analyzed having as counterparts contemporary studies and theories about playing, childhood and school inclusion, and published documents from the Education and Culture Department that treat of this theme as the guiding axis of the pedagogic proposes aimed to the Early Childhood Education. The revelations of the research show that is necessary to put effort on the disabled children s playing inside the context of the Early Childhood Education, regarding the accomplishment of accessibility laws that treat of school spaces and providing of equipment and resources that respect those children s characteristics, as well as providing opportunities for initial and continued training for the teachers, under the perspective of inclusive education and playing

Percepção de professores de educação infantil sobre a inclusão da criança com deficiência

A educação infantil é importante para o desenvolvimento da criança com necessidades especiais. Nesse processo educacional, o professor e sua percepção de educação inclusiva são fatores primordiais. Este trabalho objetivou analisar a percepção de professores de educação infantil, que quanto à prática educativa atual, diferem em relação à presença de alunos com deficiências em seus ambientes de trabalho, sobre a educação da criança com deficiência na faixa etária de 3 a 6 anos. Foram sujeitos da pesquisa 12 professores de educação infantil divididos eqüitativamente em três grupos: de escolas especiais; de escolas comuns que trabalham com crianças com deficiências inseridas em suas classes e de escolas comuns que não possuem em suas classes crianças com deficiências. A coleta de dados foi realizada através de entrevistas semi-estruturadas, gravadas em fita cassete. Foi realizada análise de conteúdo e os dados mostraram que os professores vêem como a principal contribuição do processo de inclusão a socialização da criança com deficiências, restringindo-o, porém, a crianças com possibilidades de independência. Quanto à aprendizagem, acreditam que a criança com deficiência mental é a que encontra maiores dificuldades, contrariamente à com deficiência física. Ressaltam problemas com o espaço físico, recursos materiais e humanos e relativos à formação do professor. Pôde se concluir que é preciso possibilitar aos professores uma formação que abranja conhecimentos sobre as diferentes deficiências e as necessidades educacionais relativas a estas, propiciar a adequação do espaço físico e dos recursos materiais, além de assistência técnica específica.

Tecnologia da Informação: computador e tablet no contexto da educação especial

Pós-graduação em Desenvolvimento Humano e Tecnologias - IBRC