Family-centeredness of services for young children with Down syndrome: an observational study from Turkey

Background/aim: Physicians require information on the family centeredness of services for children with Down syndrome, one of the most frequently encountered disabilities in childhood. We aimed to determine the family-centeredness of services for young children with Down syndrome and using a bioecological theory framework we hypothesized that child, family and service-related factors would be associated with such services. Materials and methods: In a crosssectional design, children with Down syndrome seen at Ankara University Developmental Pediatrics Division (AUDPD) between February 2020 and June 2020 were included if they had received services in the community for at least 12 months. Mothers responded to the measure of process of care-20 (MPOC-20) used to measure family centeredness. Results: All 65 eligible children were included; 57% were boys and median age was 25.0 (IQR: 18.5­38.0) months. The MPOC-20 subscale scores were highest for the "respectful and supportive care (RSC)" (median 6.0; IQR: 4.8­6.8) and lowest for the "providing specific information" (median 3.0; IQR: 4.4­6.5) subscales. On univariate analyses, maternal education

Malaysian teachers' experience using augmentative and alternative communication with students.

Teachers play an important role in the successful implementation of augmentative and alternative communication (AAC) for students with complex communication needs. The goal of this two-phase, mixed-methods study was to explore Malaysian teachers' use of, experience with, and perceptions about AAC. Phase 1 involved 252 teachers who completed a questionnaire that was aimed at collecting nationwide data about their use and overall perceptions of AAC. Phase 2 involved semi-structured interviews with 13 teachers who had experience supporting students who used AAC. Approximately half of the participants who completed the questionnaire knew about AAC and had used AAC with their students. Almost all of the participants had positive views of AAC though some misconceptions were reported. Most participants had limited knowledge about AAC that led them to experience difficulties supporting their students. Teachers were motivated to receive AAC-related training to enable them to use AAC more successfully with their students given the small number of SLPs in the country.

Remote microphone systems for preschool-age children who are hard of hearing: access and utilization.

OBJECTIVES: Children who are hard of hearing (CHH) have restricted access to auditory-linguistic information. Remote-microphone (RM) systems reduce the negative consequences of limited auditory access. The purpose of this study was to characterise receipt and use of RM systems in young CHH in home and school settings. DESIGN: Through a combination of parent, teacher, and audiologist report, we identified children who received RM systems for home and/or school use by 4 years of age or younger. With cross-sectional surveys, parents estimated the amount of time the child used RM systems at home and school per day. STUDY SAMPLE: The participants included 217 CHH. RESULTS: Thirty-six percent of the children had personal RMs for home use and 50% had RM systems for school. Approximately, half of the parents reported that their children used RM systems for home use for 1-2 hours per use and RM systems for school use for 2-4 hours per day. CONCLUSIONS: Results indicated that the majority of the CHH in the current study did not receive RM systems for home use in early childhood, but half had access to RM technology in the educational setting. High-quality research studies are needed to determine ways in which RM systems benefit pre-school-age CHH.

Understanding frames: A qualitative exploration of standing frame use for young people with cerebral palsy in educational settings.

BACKGROUND: Consensus opinion supports standing frame use as part of postural management for nonambulant young people with cerebral palsy. Most young people with cerebral palsy in the United Kingdom, who use standing frames, use them at nursery or school, rather than at home. In this paper we report professionals' and parents' experiences and views of standing frame use specifically in educational settings. This research was conducted as part of a large mixed methods study to determine the acceptability and inform the design of a future trial of standing frames. METHODS: Qualitative methods were used: focus groups with educational professionals, parents and clinicians (paediatricians, physiotherapists and occupational therapists) were convened. Data were analysed thematically using framework analysis. RESULTS: Five focus groups were conducted. The overarching theme "flexibility" encompassed four subordinate themes: (i) "balancing education and therapy," which described the way education professionals had to juggle different priorities from health professionals within a multi-disciplinary team; (ii) "young people's autonomy," which highlighted participants' belief that standing frame use should be centred on the individual young person and their needs; (iii) "working within logistical boundaries," which demonstrated that "ideal" standing frame use was not always possible due to logistical issues (e.g., staffing and standing frame availability); and (iv) "competence and confidence," which highlighted that educational professionals felt that they lacked the training to confidently position young people in their standing frame. CONCLUSIONS: This paper highlights the complexity of standing frame use in the educational setting. If a standing frame programme is prescribed to be delivered in an educational setting, strong multidisciplinary and interagency communication is essential to balance therapy versus education. Training is required to ensure staff are competent in using the standing frame with the young person understanding their individual requirements. A flexible approach-inclusive of the young person's needs, logistical demands and resource-is necessary.

Training needs of Portuguese practitioners working with children and young people with complex and intense support needs.

Upon the publication in Portugal of Decree-Law No. 3/2008, inclusive education for all children in regular schools became compulsory. In a short period of time, the educational community (special education teachers, regular education teachers, administrators, and technicians) were required to include and teach all students in regular schools. This article characterizes Portuguese teachers' perceptions (TPs; N = 105) about the training needs of practitioners working with children and young people with complex and intense support needs (CISNs). In this work, we use data collected using the questionnaire for practitioners working with children and young people with CISN-TPs, which was drawn up under the auspices of project ENABLIN+. The results of content analysis showed that the most frequently mentioned themes were special education, intervention strategies, international classification of functioning, disability and health, educational legislation, and family support/intervention. In conclusion, training should focus on specific contents, should be for everyone (practitioners and nonpractitioners), and should aim to improve practices, while being sufficiently flexible and differentiated to meaningfully inform each professional.

The Effectiveness of Parenting Interventions on Psychosocial Adjustment in Parents of Children and Adolescents with Type 1 Diabetes: A Meta-Analysis.

AIMS: Parenting interventions in this review refer to supportive parenting training provided for parents or primary caregivers of children and adolescents with type 1 diabetes mellitus (T1DM). The review aimed to synthesize evidence about parenting interventions in parents or caregivers of children and adolescents with T1DM, and to evaluate the effect of interventions in reducing parents' or caregivers' psychological distress, helping them share diabetes management responsibility, seek social support, and improve their quality of life. METHODS: We searched PubMed, MEDLINE, EMBASE, CINAHL, Cochrane, and Web of Science from January 1978 to October 2018. Randomized controlled trials (RCTs) comparing an intervention group of parenting programs with a control group of usual care were included. The primary outcomes were stress, family responsibility and conflict, and social support. Secondary outcomes included other psychological index and quality of life. Pooled effect sizes of weighted mean difference (WMD) were calculated. RESULTS: A total of 17 RCTs with 962 participants met the inclusion criteria. Findings of the meta-analysis showed parenting interventions could significantly reduce parents' depression (WMD = -5.78, 95% CI: -6.23 to -5.33, I2  = 0%) and distress (WMD = -5.28, 95% CI: -10.31 to -.25, I2  = 0%), and help them ask for positive social support (WMD = .83, 95% CI: .03 to 1.64, I2  = 0%). No beneficial changes of other outcomes were found. LINKING EVIDENCE TO ACTION: Parents of children and adolescents with T1DM need support from the multidisciplinary team in health care, especially in mental health, family management of childhood diabetes, and social support. Parenting interventions may help parents reduce psychological distress and depression and assist them to ask for social support. Future research should include well-designed RCTs with large samples, appropriate measures with clear definitions, objective assessment, and separation of effects on mothers and fathers.

[Integrating the touch-screen into oral health prevention programs for people with cognitive disabilities: An exploratory study in children]. / Intégration de la tablette tactile dans les programmes de prévention bucco-dentaire destinés aux personnes en situation de handicap cognitif : étude exploratoire chez l'enfant.

BACKGROUND: The oral diseases of people with disabilities are the same as those observed in the general population but occur earlier and more intensely. Primary prevention, especially toothbrushing, is at the forefront of the appropriate management of these patients. The aim of this study is to evaluate the use of a digital application on iPad® as mediator for learning toothbrushing in children with disabilities. METHODS: Twelve children from a care-center were included in this preliminary study. A training program for toothbrushing was conducted, using a visual activity schedule on iPad®. Quotation grids enabled to assess the initial situation and the program efficacy over an 11-month period. RESULTS: The children progressed over time in their autonomy and in their compliance during toothbrushing. Wilcoxon's analysis showed that these progresses were significant, although some steps remained more difficult to achieve. Three months after the end of the program, the children maintained their skills. CONCLUSIONS: The integration of the iPad® as a support for visual pedagogy and learning is useful in a dental context, for children with cognitive disabilities.

Final Requirement--State Technical Assistance Projects To Improve Services and Results for Children Who Are Deaf-Blind and National Technical Assistance and Dissemination Center for Children Who Are Deaf-Blind (TA&D­DB). Final requirement.

The Assistant Secretary for Special Education and Rehabilitative Services announces a requirement under the Technical Assistance and Dissemination to Improve Services and Results for Children with Disabilities (TA&D) program. The Assistant Secretary may use this requirement for competitions in fiscal year (FY) 2018 and later years.

Medicosocial characteristics as predictors of school achievements in students with intellectual and developmental disabilities: A follow-up study in ujjain and shajapur districts of Madhya Pradesh, India.

BACKGROUND: For a long time, there have been arguments about which factors influence the skill development of students with intellectual disability in rehabilitation centers. OBJECTIVE: The present follow-up study was thus planned to analyze the effect of the demographic variables related to disabled child, his/her parents and the family; their schooling pattern and types of study settings and the associated comorbidities on improvement in the performance score of students attending these study settings in one academic year. METHODS: The study was conducted among children (n = 204) with intellectual disability receiving rehabilitation services in centers run by a nongovernmental organization in two districts of Central India. RESULTS: : Application of regression analysis concluded that among various hypothesized factors higher birth order, more time spent by parents for child's development at home, high performing classes, absence of epilepsy, psychiatric comorbidities, and associated physically challenged were significantly associated with improvement in overall mean performance score. CONCLUSIONS: : The study delineates the need to motivate parents, so that they can involve themselves to develop their child's full potential. Identification of associated comorbidities is recommended and parents need to be appraised accordingly.

A Texas Two-Step in the Right Direction--Looking Beyond Recent Legislation to Improve the Provision of Special Education Services in Texas.

This article analyzes the current state of the special education system in Texas following the 85th Legislative Session, focusing on the practical and legal implications of the limitation imposed by the Texas Education Agency in 2004 before analyzing Senate Bill 160, which requires Texas to remove the limitation on special education services, and its future impact on special education in Texas. Additionally, this article addresses Senate Bill 927, which outlined a plan to ensure that students who were previously denied services receive an adequate evaluation, why the legislation failed, and potential remedies for students who have been negatively impacted by the limitation over the years. Following this discussion, policy recommendations on how to further improve the current state of special education in Texas are proposed.

The Fallacy of Choice: the Destructive Effect of School Vouchers on Children With Disabilities.

This Article addresses the impact of school voucher programs on students with disabilities. We show that for children with disabilities, the price of admission into so-called "school choice" programs is so high that it is effectively no real choice at all. School voucher programs require students with disabilities to sign away their robust federal rights and protections in the public school system. Under the Individuals with Disabilities Education Act (IDEA)--the preeminent legislative safeguard for students with disabilities--these rights include the right to a "free and appropriate public education" delivered through an "individualized education plan." By giving up these protections, children with disabilities are left at the mercy of private schools that have no legal obligation to provide them with an appropriate education, and, in the vast majority of cases, are not legally prohibited from discriminating against them on the basis of their disability. We argue that school voucher programs--including a proposed federal voucher program--put the education of students with disabilities back decades, and likely constitute a violation of the Equal Protection Clause of the U.S. Constitution.

Individualized Education Program Development Among Racially/Ethnically Diverse Children and Adolescents with Health Conditions.

Background Black, Hispanic, and low income children bear a greater burden of chronic health conditions compared to wealthier white counterparts. Under federal law, schools provide services to children when their health conditions impair learning. These school services, called individualized education programs (IEPs) can reduce disparities in school outcomes. This paper examines the extent to which children with health conditions have an IEP plan, an important first step in understanding service utilization. Method Andersen's Behavioral Model was used to examine IEP plan presence by using the 2012 National Survey of Children's Health. School aged children (6-17), with at least one health condition (N = 16,496) were examined using multivariable logistic regression analysis to understand predisposing (age, sex, race/ethnicity), enabling (family and neighborhood), and need (health related) factors as predictors of having an IEP plan. Race/ethnicity interaction terms tested for moderating effects of race/ethnicity on the relationship between predisposing, enabling and need factors and having an IEP plan. Results Hispanic children were 93.4 % (OR = .066) less likely and Black children were 87.9 % (OR = .121) less likely to have an IEP plan compared to White children. Black, Hispanic, and Multiracial children were more likely to have an IEP plan if they had more family and neighborhood resources (OR range 1.37-1.62) and greater health needs and health care needs (OR range 1.29-2.57). Conclusion The Behavioral Model was useful in predicting the presence of IEP plans among racially/ethnically diverse children with health conditions as an important step in understanding disparities in healthcare access in schools.

Why chronically ill children face challenges in regular classrooms: perspectives from nursing teachers in Japan.

BACKGROUND: Chronically ill children are increasingly expected to join their peers in regular classrooms. However, sometimes schools do not provide adequate assistance. This study explores nursing teachers' thoughts and experiences on integrating such students into regular classrooms in Japan. METHODS: We analysed 79 essays written by nursing teachers collectively titled 'The challenges of having chronically ill children in regular classrooms'. We conducted a qualitative study using Kinoshita's Modified Grounded Theory Approach. RESULTS: Nursing teachers identified three main obstacles: insufficient resources to support chronically ill students, parents not playing a supporting role in aiding them at school and a regular classroom not being suitable for them. However, collaborating with the children's medical staff proved successful at integrating them into regular classrooms. CONCLUSIONS: Given these obstacles, it seems very difficult for nursing teachers to lead the way toward establishing cooperative support systems for the children. Instructions from medical staff could empower teachers to set up such systems.

Assistance to States for the Education of Children With Disabilities and Preschool Grants for Children With Disabilities Program; Early Intervention Program for Infants and Toddlers With Disabilities. Final regulations.

The Secretary of Education (Secretary) amends the regulations implementing Parts B and C of the Individuals with Disabilities Education Act (IDEA). These conforming changes are needed to implement statutory amendments made to the IDEA by the Every Student Succeeds Act (ESSA), enacted on December 10, 2015. These regulations remove and revise IDEA definitions based on changes made to the definitions in the Elementary and Secondary Education Act of 1965 (ESEA), as amended by the ESSA, and also update several State eligibility requirements to reflect amendments to the IDEA made by the ESSA. They also update relevant cross-references in the IDEA regulations to sections of the ESEA to reflect changes made by the ESSA. These regulations also include several technical corrections to previously published IDEA Part B regulations.

Participation in Early Childhood Educational Environments for Young Children with and Without Developmental Disabilities and Delays: A Mixed Methods Study.

AIMS: This mixed methods study examined: 1) how young children with and without developmental disabilities and delays participate in daycare or preschool activities; 2) similarities and differences in environmental factors impacting daycare or preschool participation; and 3) strategies used by parents who desired a change in their child's participation. METHODS: Data were drawn from 129 parents of young children with and without developmental disabilities and delays (mean age = 49.3 months) residing in North America. Summary and item-level group differences based on disability status were assessed for participation and environmental supports to participation. Narrative data on parental strategies were content coded, transformed into numerical counts, and summarized to identify strategies commonly employed by parents to promote their child's participation. RESULTS: Moderate to large disability related group differences in participation and environmental support to participation were found even after controlling for confounding effects of child age, child gender, and family income. Parents commonly described strategies focused on "child care tasks" and "child peer groups," irrespective of the type(s) of change they desired. CONCLUSIONS: Study findings suggest that discrepancies in school participation between young children with and without disabilities and delays can be detected and intervened on during the early childhood period.

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review.

BACKGROUND: When parents of young children with special health care needs (CSHCN) receive their child's diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child's immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. OBJECTIVE: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. METHODS: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. RESULTS: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. CONCLUSIONS: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.

Assistance to States for the Education of Children With Disabilities; Preschool Grants for Children With Disabilities. Final regulations.

The Secretary amends the regulations under Part B of the Individuals with Disabilities Education Act (IDEA) governing the Assistance to States for the Education of Children with Disabilities program and the Preschool Grants for Children with Disabilities program. With the goal of promoting equity under IDEA, the regulations will establish a standard methodology States must use to determine whether significant disproportionality based on race and ethnicity is occurring in the State and in its local educational agencies (LEAs); clarify that States must address significant disproportionality in the incidence, duration, and type of disciplinary actions, including suspensions and expulsions, using the same statutory remedies required to address significant disproportionality in the identification and placement of children with disabilities; clarify requirements for the review and revision of policies, practices, and procedures when significant disproportionality is found; and require that LEAs identify and address the factors contributing to significant disproportionality as part of comprehensive coordinated early intervening services (comprehensive CEIS) and allow these services for children from age 3 through grade 12, with and without disabilities.

[Muenster Parental Programme--Feedback from Parents: How do parents evaluate an early intervention programme for improving the communication with their baby or toddler with hearing impairment?]. / Münsteraner Elternprogramm--Elternfeedback: Wie beurteilen Eltern die Frühintervention zur Kommunikationsförderung von Säuglingen und Kleinkindern mit Hörschädigung?

BACKGROUND: With the implementation of the UNHS, early educational services' existing concepts of early intervention have to be adapted to the situation and needs of families with a preverbal child who is deaf or hard of hearing. The Muenster Parental Programme (MPP), a module in early family-centered intervention, fulfils this requirement. OBJECTIVE: We report feedback from participating parents regarding processes and outcomes of the MPP. The self-developed questionnaire was checked for its suitability as feedback instrument for measuring parental satisfaction with the MPP. METHOD: 29 parents who participated in the MPP assessed the programme by using the standardised FBB and the self-developed questionnaire FB-MEP, which is specific to the MPP. RESULTS: Using the FBB, 96% of parents judged the MPP to be good or very good. With the FB-MEP, parents rated setting, contents and didactics as highly as they did using the FBB (r = 0.7, p < 0.01). In particular, parents judged both the contact and exchange with other affected parents, and the specific individual support for communicating with their child (including video feedback) as especially helpful. CONCLUSIONS: The results reflect parents' high level of satisfaction with the setting, content, didactics and individual benefit gained by their child and themselves from the MPP. The parents are aware of the efficacy of the MPP, which was shown in the controlled intervention study. The self-developed questionnaire FB-MEP was shown to be a suitable instrument for quality assurance measurements of the MPP.

Latin American Physical Educators' Intention to Teach Individuals With Disabilities.

PURPOSE: To analyze Latin American physical education (PE) teachers' intentions toward teaching students with disabilities. PARTICIPANTS: 474 in-service PE teachers from 5 different Latin American countries. METHOD: Descriptive survey. Data were collected using a modified version of the Physical Educators' Intention Toward Teaching Individuals With Disabilities Survey. Multiple-regression analysis showed significant differences in the attitudes of teachers by gender, the number of adapted-PE courses taken, and years of experience working with individuals with disabilities. RESULTS: The predictor variables had a significant impact on the participants' intentions toward teaching children with disabilities; however, the effects of these predictor variables differed between countries.

Validity of the Special Needs Education Assessment Tool (SNEAT), a Newly Developed Scale for Children with Disabilities.

The improvement of the quality of life (QOL) of children with disabilities has been considered important. Therefore, the Special Needs Education Assessment Tool (SNEAT) was developed based on the concept of QOL to objectively evaluate the educational outcome of children with disabilities. SNEAT consists of 11 items in three domains: physical functioning, mental health, and social functioning. This study aimed to verify the reliability and construct validity of SNEAT using 93 children collected from the classes on independent activities of daily living for children with disabilities in Okinawa Prefecture between October and November 2014. Survey data were collected in a longitudinal prospective cohort study. The reliability of SNEAT was verified via the internal consistency method and the test-pretest method; both the coefficient of Cronbach's α and the intra-class correlation coefficient were over 0.7. The validity of SNEAT was also verified via one-way repeated-measures ANOVA and the latent growth curve model. The scores of all the items and domains and the total scores obtained from one-way repeated-measures ANOVA were the same as the predicted scores. SNEAT is valid based on its goodness-of-fit values obtained using the latent growth curve model, where the values of comparative fit index (0.983) and root mean square error of approximation (0.062) were within the goodness-of-fit range. These results indicate that SNEAT has high reliability and construct validity and may contribute to improve QOL of children with disabilities in the classes on independent activities of daily living for children with disabilities.