A Transdisciplinary Approach to Promoting Self-Determination: Collaboration Between Special Education Teachers and Music Therapists

Self-determination consists of essential skills for students with disabilities because it gives individuals the power to make decisions based on their own needs and desires. Self-determination includes areas such as choice-making, goal setting, and self-directed learning. Music therapy is a service that can be used to enhance self-determination for students within the educational setting. Through intentional collaboration, music therapists and special educators can bring together their expertise to promote self-determination in students with disabilities. As members of students’ Individualized Educational Programs (IEPs), both professionals are working towards the common interest of fulfilling individuals’ goals and needs. The authors of this manuscript outline and describe a three-step process for collaboration between music therapists and special educators to promote self-determination among students while also providing a vignette to demonstrate this practice.

Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU

Phenylketonuria (PKU) is an autosomal recessive disorder of phenylalanine (Phe) metabolism, causing a build-up of Phe in the body. Treatment consists of a Phe-restricted diet for life and regular determination of blood Phe levels to monitor the intake of Phe. Despite the fact that diet is the cornerstone of treatment, there are no studies examining common knowledge about food items and whether they are allowed as part of the PKU diet. Improving parents’ and patients’ knowledge and competence about the diet enables them to make appropriate food choices. This study validates a food-knowledge questionnaire first developed in Spanish and modified for English speaking populations. The questionnaire potentially helps parents to prepare appropriate meals and healthcare providers to create individualized educational programs about PKU for children and adolescents with this disorder.

Psychological and pedagogical support of children with disabilities in the system of additional education

The article focuses on the problem of psychological and pedagogical support of a child with disabilities in additional education from preschool age through the period of schooling to the adulthood. In this article we discuss specific Individualized Educational Programs (IEP), using of effective pedagogical technologies in working with children of different nosological groups. The reader is referred to following technologies: “play environment”, “a successful first-grader”, “skillful hands”, “sports, leisure, development”, assessment of success in various fields of activity, dynamic observation of the individual trajectory of additional education; technologies of influence on the motivational component of the additional education program and its extrapolation to the professional credo of a teenager with disabilities. The article describes conditions and opportunities for the disclosure of creative potential of children with disabilities, the opportunities for their career growth and other aspects of their realization in society.

Novel Missense Variants in ADAT3 as a Cause of Syndromic Intellectual Disability

Autosomal recessive variants in the adenosine deaminase, tRNA specific 3 (ADAT3) gene cause a syndromic form of intellectual disability due to a loss of ADAT3 function. This disorder is characterized by developmental delay, intellectual disability, speech delay, abnormal brain structure, strabismus, microcephaly, and failure to thrive. A small subset of individuals with ADAT3 deficiency have other structural birth defects including atrial septal defect, patent ductus arteriosus, hypospadias, cryptorchidism, and micropenis. Here, we report a sibling pair with novel compound heterozygous missense variants that affect a conserved amino acid in the deaminase domain of ADAT3. These siblings have many of the features characteristic of this syndrome, including, intellectual disability, hypotonia, esotropia, failure to thrive, and microcephaly. Both had gastroesophageal reflux disease (GERD), feeding problems, and aspiration requiring thickening of feeds. Although they have no words, their communication abilities progressed rapidly when they began to use augmentative and alternative communication (AAC) devices. One of these siblings was born with an anterior congenital diaphragmatic hernia, which has not been reported previously in association with ADAT3 deficiency. We conclude that individuals with ADAT3 deficiency should be monitored for GERD, feeding problems, and aspiration in infancy. They may also benefit from the use of AAC devices and individualized educational programs that take into account their capacity for nonverbal language development. Additional studies in humans or animal models will be needed to determine if ADAT3 deficiency predisposes to the development of structural birth defects.

Apoyos y autodeterminación en la escuela inclusiva. Factores relacionados con la obtención de resultados personales positivos

RESUMEN Las propuestas educativas actuales se fundamentan en el principio de atención a la diversidad, desde el que se pretende dotar al alumnado de los apoyos y medidas necesarias para alcanzar una plena autodeterminación en la escuela inclusiva. El objetivo del presente estudio es evaluar el nivel de autodeterminación del alumnado adolescente con y sin Necesidades Específicas de Apoyo Educativo (NEAE) y la influencia de las medidas de apoyo sobre la consecución de un mayor nivel de autodeterminación, con el fin de proporcionar una serie de pautas de intervención en las aulas que orienten el aprendizaje y expresión de comportamientos autodeterminados. Se emplea una metodología cuantitativa, de tipo descriptivo-exploratorio, para la evaluación de la autodeterminación en cuatro dimensiones: autonomía, autorregulación, empoderamiento y autoconocimiento. La muestra se compone de 1,746 estudiantes, y el instrumento utilizado es la Escala ARC-INICO (Verdugo et al., 2015b). Los resultados muestran niveles adecuados de autodeterminación, siendo significativamente inferiores en el alumnado con NEAE, sobre todo en aquel que recibe apoyo de carácter intensivo (Adaptación Curricular Individualizada, Programas de Diversificación Curricular, combinación entre agrupamiento flexible y refuerzo educativo). Estos resultados invitan a reflexionar sobre el tipo y la calidad de los recursos de los centros y sobre la actuación del profesorado para atender a la diversidad del alumnado y la promoción de su autodeterminación desde la perspectiva de la calidad de vida. Se proponen pautas de orientación e intervención para la instrucción en autodeterminación en el aula y desde los departamentos de orientación.ABSTRACT Current educational proposals are based on the principle of attention to diversity. It expects to give all students the supports and resources needed to achieve a full self-determination in the inclusive school. The aim of the present study is to assess the level of self-determination of students with and without Special Educational Needs (SEN), as well as the influence of the educational supports on achieving a higher level of self-determination, in order to provide a set of guidelines for intervention in classrooms that routed the learning and expression of self-determined behaviors in young students. A quantitative methodology, descriptive-exploratory, is used to assess self-determination in four domains: autonomy, self-regulation, empowerment and self-knowledge. The ARC-INICO scale (Verdugo et al., 2015b) is applied to a sample composed by 1,746 students. The results show adequate level of self-determination. It is significantly lower in students with SEN, especially those who receives intensive support (Individualized Educational Programs, Curricular Diversification Programs, combination of flexible grouping and educational support). These findings invite reflection on the type and quality of the resources of schools and the teachers’ actions to address student diversity and the promotion of self-determination from the perspective of quality of life. Guidelines for counseling and intervention for instruct self-determination in the classroom and in the guidance departments are proposed.

Designing Culturally Responsive and Relevant Individualized Educational Programs

Developing culturally responsive and relevant individualized educational programs (IEP) is becoming increasingly more important as the student population becomes more diverse. Current supports available for IEP teams primarily address the technical aspects of the IEP (e.g., writing goals that are measurable) but offer little assistance in designing culturally responsive and relevant IEPs. This article provides a tool and process for integrating culturally responsive and relevant aspects into the IEP document and process. The Culturally Responsive and Relevant IEP Builder (CRRIB) was developed to guide IEP teams through this process and could be used to conduct assessments, evaluate current practices, and guide the development of interventions, strategies, and supports for students. The CRRIB helps maintain the team’s focus on enhancing the student’s cultural competence, incorporating the student’s prior experiences, and valuing the family’s frame of reference. A sample of the CRRIB with student information is included.

Remote Access to Scientific Laboratory Equipment and Competency-Based Approach to Science and Technology Education

This article describes the competency-based approach to e-learning education that utilizes remote access to the laboratory equipment. The main focus of the paper is the structure and design of the e-learning system used in the Southern Federal University (Russia). The article discusses the related pedagogical strategies and presents system's features in the context of the education for skilled workers. This approach uses access to the scientific and technology laboratory equipment either for provisioning of the individualized educational programs or to enable the students who are unable to attend a conventional laboratory for a variety of reasons, such as disability, and part-time study to conduct the experimental work. It will be shown that the experimental work involving the modern scientific equipment is an important aspect of the learning process in the areas of material science and nanotechnology. The learning strategy is the reverse of that used in the traditional approach. The authors suggest to start with the introduction to the practical applications of science and technology relevant to the current job market, and study the general laws and theoretical principles afterwards, to deepen understanding and achieve the educational goals.

What family caregivers learn when providing care at the end of life: A qualitative secondary analysis of multiple datasets

Objective:Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care.Method:Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis.Results:Thematic and cross-comparative analyses found three general kinds of learning that were described—knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about “learning” appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase “I have had to learn.”Significance of Results:Findings can inform the development of individualized educational programs and interventions for family caregivers.

Responsiveness to Intervention in Reading

This article describes how a purposeful sample of 62 elementary schools from 17 states implemented a Response to Intervention (RtI) framework for reading. School informants answered surveys and were interviewed about differentiated instruction in Tier 1, screening/benchmarking, where Tier 2 interventions were located, typical group size and the minutes/day of intervention in Tiers 2 and 3 groups, and how students with individualized educational programs (IEPs) in reading were served in the school’s RtI model. Schools reported using differentiated instruction in Tier 1, favored curriculum-based measures for screening/benchmarking and progress monitoring, reported more intensive interventions and more progress monitoring in Tier 3, and used a wide variety of models for serving students with IEPs within the schools’ RtI models.